For a 22-year-old author to publish a book is a major accomplishment. It’s even more impressive when the writer is autistic.
In “Episodes: My Life As I See It,” Carmel Valley resident Blaze Ginsberg recounts his teen years with all the normal tribulations of adolescence, compounded by the communication and social interaction problems that accompany autism spectrum disorders. Unlike the traditional memoir, Blaze tells his story in a format similar to that of the Internet Movie Database and TV.com. He writes about life events as though they are TV episodes, complete with release date, cast list and soundtrack.
“I thought (this format) was such a clever and natural way to communicate his way of thinking,” said Debra Ginsberg, Blaze’s mother and author of six published books. “I learned a lot about Blaze reading it. There’s no other young adult book written by someone on the spectrum —- this is the first one.”
Blaze’s name is most recognizable to those who read his story in Debra’s 2002 memoir, “Raising Blaze: Bringing Up an Extraordinary Son in an Ordinary World.” The book recounts her first 13 years as a single mother to a child who defied simple diagnosis. She fought fiercely to get him the education he deserved, even home-schooling him at one point. At 19, Blaze finally received an autism diagnosis. He now attends community college and has a part-time job at a grocery store.
Blaze is proud of how his mother told his story in her book, but seeing his own memoir published is even better. “It’s a nice accomplishment,” he said. “But there’s also an ironic taste to it because it shows people who doubted me that I could do something.”
Blaze’s journey as a writer began early, with much encouragement from his mother.
“He’s been writing songs, poems and short stories ever since he began keyboarding,” she said. “I always thought he had an unusual turn of phrase. I pushed him in a lot of things, but never with writing, because it was something he really enjoyed.”
The writing of “Episodes” began in December 2003, when Blaze’s everyday routine changed slightly, something he strongly dislikes. While thinking about that, he suddenly saw his life in a different light.
“I thought that stuff in my life was like TV,” he said. “When I got home that day, I went crazy writing. My grandfather read what I wrote, then my Nana and then my mother. My mother really encouraged me to keep going.”
When Blaze reached 50 pages, Debra sent those pages to her friend Steven Malk, one of the premier children’s book agents in the country. Malk sold the book to Roaring Book Press, and it hit bookstore shelves Sept. 1.
Many of the issues Blaze writes about affect most teen boys, such as finding a girlfriend and passing his driving test (he recently passed the written test, something that’s not in the book). “You see more stuff in the book being solved than not,” he said. “That’s what the book is really about.”
The reviews so far have been positive. “Ginsberg gives readers a unique glimpse into an adolescent mind that is simply wired differently,” read an article in School Library Journal. “Blaze has a capacity to translate the often untranslatable differences of human beings. Blaze blazes his own his literary path with humor and pathos,” wrote actress and children’s author Jamie Lee Curtis.
Blaze admits he never thought of how “Episodes” would inspire other teens on the autism spectrum, but would be happy if it does. He’s excited about his first book signing Thursday evening at The Book Works in Del Mar.
“I love public speaking,” he said. “I like talking about myself and letting people know what’s happening behind the scenes with me.”
For Debra, Blaze’s accomplishment is like another chapter in her memoir, one that shows what she always knew to be true —- with the right encouragement and assistance, her son could be whatever he wanted to be.
“I think that Blaze is the most courageous person I know,” she said. “The kinds of obstacles and struggles he faces take an enormous amount of courage to do every day. And even in the most difficult of times, he got up, went to school and did it. That’s how he approaches everything in life. For me, that’s true inspiration.”
Blaze Ginsberg reads from and signs “Episodes: My Life As I See It”
Monday, September 7, 2009
Sunday, September 6, 2009
Autistic savant shares his genius
THE instant Derek Paravicini heard the sound of the music, he broke free from his parents' grasp and headed towards it. The little girl on the piano stool took a tumble as the then four-year-old boy, blind, autistic and severely learning impaired, pushed her out of the way and began playing in her place.
"It was utterly extraordinary," says Adam Ockleford. "He was hitting the notes with his hands, his feet, his nose, even his elbows. It was clear he had never had a lesson, yet he produced this wonderful version of Don't Cry For Me Argentina."
Mr Ockleford, a music psychologist and then head of music at Linden Lodge School for the blind and intellectually impaired, realised at once that the child frantically bashing keys was a prodigy. Today, at 27, Paravicini is acknowledged as one of only 23 autistic savants in the world. He is one of those rare people with severe learning difficulties, who is a genius in one particular area.
He can neither count to 10 nor tell left from right. He needs round-the-clock supervision: without carers he could not dress or feed himself.
But Paravicini has the extremely rare gift of universal, absolute pitch and remembers every piece of music he has ever heard — not only the melody, but what each instrument is playing, just as Mozart could. Paravicini's precision is greater than professional musicians', despite his inability to communicate clearly with language. After listening to a melody once, he can play it without error.
His international audience is immense — a few months ago he played to several thousand people in Las Vegas, and in the next few months will play in Hollywood and Connecticut. His first CD, Echoes Of The Sounds To Be, a jazz compilation, will go on sale on Amazon next month.
Paravicini lives at the Royal National Institute of the Blind College in Surrey, where he spends much of each day at the piano. But if his first love is music, his second is meeting people. He can conduct simple conversations but, in common with many who have autism, he reverts to echolalia, repeating what has just been said to him, when he cannot comprehend the comment.
Suddenly, he announces: "I'll play now."
Mr Ockleford guides him to the piano and Paravicini flexes his fingers. As they ripple across the keys, the haunting Mozart Sonata in A fills the room. Engrossed, Paravicini and his piano have become one. He slips effortlessly into Rimsky-Korsakov's Flight of the Bumble Bee. Just as swiftly, as he began, he stops.
That Derek survived at all is remarkable. Born prematurely at only 25 weeks, he "died" three times. Before long, his severe disabilities, caused by an overdose of oxygen, became apparent. "We noticed straight away that he couldn't distinguish between light and dark," says his mother, Mary Anne. "No one played any instruments at home; the only reason we gave him a plastic, toy organ, when he was around 18 months, was because we were desperately trying to find things to stimulate and engage his interest."
Mr Ockleford began teaching Paravicini when he was four. It took eight years to straighten out the boy's technique. His classical playing is superb, but he cannot resist improvising — an approach much better suited to jazz.
For Paravicini's parents and Mr Ockleford, now the director of education at the institute, it has always been difficult deciding how often to sanction his public appearances.
"It's true that he cannot, himself, give informed consent," Mr Ockleford says. "Ultimately we can only take decisions on his behalf and hope they are in his best interests. There is no doubt that he is, truly, one of the world's greatest savants."
"It was utterly extraordinary," says Adam Ockleford. "He was hitting the notes with his hands, his feet, his nose, even his elbows. It was clear he had never had a lesson, yet he produced this wonderful version of Don't Cry For Me Argentina."
Mr Ockleford, a music psychologist and then head of music at Linden Lodge School for the blind and intellectually impaired, realised at once that the child frantically bashing keys was a prodigy. Today, at 27, Paravicini is acknowledged as one of only 23 autistic savants in the world. He is one of those rare people with severe learning difficulties, who is a genius in one particular area.
He can neither count to 10 nor tell left from right. He needs round-the-clock supervision: without carers he could not dress or feed himself.
But Paravicini has the extremely rare gift of universal, absolute pitch and remembers every piece of music he has ever heard — not only the melody, but what each instrument is playing, just as Mozart could. Paravicini's precision is greater than professional musicians', despite his inability to communicate clearly with language. After listening to a melody once, he can play it without error.
His international audience is immense — a few months ago he played to several thousand people in Las Vegas, and in the next few months will play in Hollywood and Connecticut. His first CD, Echoes Of The Sounds To Be, a jazz compilation, will go on sale on Amazon next month.
Paravicini lives at the Royal National Institute of the Blind College in Surrey, where he spends much of each day at the piano. But if his first love is music, his second is meeting people. He can conduct simple conversations but, in common with many who have autism, he reverts to echolalia, repeating what has just been said to him, when he cannot comprehend the comment.
Suddenly, he announces: "I'll play now."
Mr Ockleford guides him to the piano and Paravicini flexes his fingers. As they ripple across the keys, the haunting Mozart Sonata in A fills the room. Engrossed, Paravicini and his piano have become one. He slips effortlessly into Rimsky-Korsakov's Flight of the Bumble Bee. Just as swiftly, as he began, he stops.
That Derek survived at all is remarkable. Born prematurely at only 25 weeks, he "died" three times. Before long, his severe disabilities, caused by an overdose of oxygen, became apparent. "We noticed straight away that he couldn't distinguish between light and dark," says his mother, Mary Anne. "No one played any instruments at home; the only reason we gave him a plastic, toy organ, when he was around 18 months, was because we were desperately trying to find things to stimulate and engage his interest."
Mr Ockleford began teaching Paravicini when he was four. It took eight years to straighten out the boy's technique. His classical playing is superb, but he cannot resist improvising — an approach much better suited to jazz.
For Paravicini's parents and Mr Ockleford, now the director of education at the institute, it has always been difficult deciding how often to sanction his public appearances.
"It's true that he cannot, himself, give informed consent," Mr Ockleford says. "Ultimately we can only take decisions on his behalf and hope they are in his best interests. There is no doubt that he is, truly, one of the world's greatest savants."
Sunday, February 22, 2009
AT HOME WITH: DANIEL TAMMET; Brainman, At Rest In His Oasis
BULLIED by other children and bewildered by ordinary life, Daniel Tammet spent his early years burrowed deep inside the world of numbers. They were his companions and his solace, living, breathing beings that enveloped him with their shapes and textures and colors.
He still loves them and needs them; he can still do extraordinary things with them, like perform complicated calculations instantly in his head, far beyond the capacity of an ordinary calculator. But Mr. Tammet, who at the age of 25 received a diagnosis of Asperger's syndrome, a high-functioning form of autism, has made a difficult and self-conscious journey out from his own mind.
''I live in two countries, one of the mind and one of the body, one of numbers and one of people,'' he said recently. Slight and soft-spoken, dressed in a T-shirt and casual combat-style pants, he sat cross-legged in his living room and sipped a cup of tea, one of several he drinks at set times each day.
Not so long ago, even a conversation like this one would have been prohibitively difficult for Mr. Tammet, now 28. As he describes in his newly published memoir, ''Born on a Blue Day: Inside the Extraordinary Mind of an Autistic Savant'' (Free Press), he has willed himself to learn what to do. Offer a visitor a drink; look her in the eye; don't stand in someone else's space. These are all conscious decisions.
Recently, some friends warned him that in his eagerness to make eye contact, he tended to stare too intently. ''It's like being on a tightrope,'' he said. ''If you try too hard, you'll come off. But you have to try.''
Mr. Tammet's house, a small cottage in a sleepy cul-de-sac in this quiet Kent town, is a refuge from the sensory assaults of the world outside -- the city, big supermarkets, crowds -- which tend to overwhelm and unnerve him.
''The house is like my oasis,'' he said. ''I structured it -- the colors of it, the way the furniture is laid out. The way it feels, and the way I work -- it's very much a matter of routine, and it makes me feel calm and comfortable.''
Mr. Tammet's book is an elegant account of how his condition has informed his life, a rare first-person insight into a mysterious and confounding disorder. He is unusual not just because of his lucid writing style and his ability to analyze his own thoughts and behavior, but also because he is one fewer than 100 ''prodigious savants'' -- autistic or otherwise mentally impaired people with spectacular, almost preternatural skills -- in the world, according to Dr. Darold Treffert, a researcher of savant syndrome.
He wears his gifts lightly, casually. When he gets nervous, he said, he sometimes reverts to a coping strategy he employed as a child: he multiplies two over and over again, each result emitting in his head bright silvery sparks until he is enveloped by fireworks of them. He demonstrated, reciting the numbers to himself, and in a moment had reached 1,048,576 -- 2 to the 20th power. He speaks 10 languages, including Lithuanian, Icelandic and Esperanto, and has invented his own language, Mantï. In 2004, he raised money for an epilepsy charity by memorizing and publicly reciting the number pi to 22,514 digits -- a new European record. In addition to Asperger's, he has the rare gift of synesthesia, which allows him to see numbers as having shapes, colors and textures; he also assigns them personalities. His unusual mind has been studied repeatedly by researchers in Britain and the United States.
Mr. Tammet sees himself as an ambassador and advocate for people with autism.
''Autistic people do fall in love,'' he said. ''They do have joy; they do have sorrow; they do experience ups and downs like everyone else. We may not have the same ability to manage those emotions as others have, but they're there, and sometimes our experience of them is far more intense than the experience of other people.''
Mr. Tammet grew up in east London, one of nine children. He suffered a series of early epileptic fits that he believes brought on his synesthesia. Through his childhood troubles -- a lack of friends, the tendency to block out the world, an incessant counting of everything countable -- he was buoyed by a loving family whose size ensured, he said, that ''I could never close inside myself.''
He still loves them and needs them; he can still do extraordinary things with them, like perform complicated calculations instantly in his head, far beyond the capacity of an ordinary calculator. But Mr. Tammet, who at the age of 25 received a diagnosis of Asperger's syndrome, a high-functioning form of autism, has made a difficult and self-conscious journey out from his own mind.
''I live in two countries, one of the mind and one of the body, one of numbers and one of people,'' he said recently. Slight and soft-spoken, dressed in a T-shirt and casual combat-style pants, he sat cross-legged in his living room and sipped a cup of tea, one of several he drinks at set times each day.
Not so long ago, even a conversation like this one would have been prohibitively difficult for Mr. Tammet, now 28. As he describes in his newly published memoir, ''Born on a Blue Day: Inside the Extraordinary Mind of an Autistic Savant'' (Free Press), he has willed himself to learn what to do. Offer a visitor a drink; look her in the eye; don't stand in someone else's space. These are all conscious decisions.
Recently, some friends warned him that in his eagerness to make eye contact, he tended to stare too intently. ''It's like being on a tightrope,'' he said. ''If you try too hard, you'll come off. But you have to try.''
Mr. Tammet's house, a small cottage in a sleepy cul-de-sac in this quiet Kent town, is a refuge from the sensory assaults of the world outside -- the city, big supermarkets, crowds -- which tend to overwhelm and unnerve him.
''The house is like my oasis,'' he said. ''I structured it -- the colors of it, the way the furniture is laid out. The way it feels, and the way I work -- it's very much a matter of routine, and it makes me feel calm and comfortable.''
Mr. Tammet's book is an elegant account of how his condition has informed his life, a rare first-person insight into a mysterious and confounding disorder. He is unusual not just because of his lucid writing style and his ability to analyze his own thoughts and behavior, but also because he is one fewer than 100 ''prodigious savants'' -- autistic or otherwise mentally impaired people with spectacular, almost preternatural skills -- in the world, according to Dr. Darold Treffert, a researcher of savant syndrome.
He wears his gifts lightly, casually. When he gets nervous, he said, he sometimes reverts to a coping strategy he employed as a child: he multiplies two over and over again, each result emitting in his head bright silvery sparks until he is enveloped by fireworks of them. He demonstrated, reciting the numbers to himself, and in a moment had reached 1,048,576 -- 2 to the 20th power. He speaks 10 languages, including Lithuanian, Icelandic and Esperanto, and has invented his own language, Mantï. In 2004, he raised money for an epilepsy charity by memorizing and publicly reciting the number pi to 22,514 digits -- a new European record. In addition to Asperger's, he has the rare gift of synesthesia, which allows him to see numbers as having shapes, colors and textures; he also assigns them personalities. His unusual mind has been studied repeatedly by researchers in Britain and the United States.
Mr. Tammet sees himself as an ambassador and advocate for people with autism.
''Autistic people do fall in love,'' he said. ''They do have joy; they do have sorrow; they do experience ups and downs like everyone else. We may not have the same ability to manage those emotions as others have, but they're there, and sometimes our experience of them is far more intense than the experience of other people.''
Mr. Tammet grew up in east London, one of nine children. He suffered a series of early epileptic fits that he believes brought on his synesthesia. Through his childhood troubles -- a lack of friends, the tendency to block out the world, an incessant counting of everything countable -- he was buoyed by a loving family whose size ensured, he said, that ''I could never close inside myself.''
A Savant Aided by the Sparks That He Sees Inside His Head
As a young child, Daniel Tammet had seizures. They turned him into a strange boy.
''I'm seeing things in my head like little sparks firing off,'' Mr. Tammet, a 26-year-old Englishman, says tonight on ''Brainman,'' on the Science Channel. ''And it's not until the very last moment that those sparks tell me what on earth they mean.''
Sounds spooky, right? And to be sure, if the sparks told Mr. Tammet that he had a message for the bats, or that his hair was lonely, he might have come across as just another delusional solipsist. But Mr. Tammet's sparks are mightier than the usual sparks: They give him not bat-words, but pi to the 22,500th place and the capacity to learn whole languages in a week. He's not only a savant but also a warm and communicative man; he has the ability, rare in savants, to describe how his esoteric knowledge visits him.
After reeling off the answers to warm-up questions -- say, what's 37 to the 4th power? -- Mr. Tammet fields inquiries about the way he pokes the table while he's coming up with answers (1,874,161, say).
''I'm seeing the numbers,'' he explains. ''But I'm not seeing them. It's strange. I'm seeing pictures, shapes and patterns. Almost like a square, like the texture of water. Drops -- ripples, almost. Like something reflective. It's something you can look through, almost metallic. Like bubbles. Then a bit like a flash.''
Good luck boosting your learning power by trying to replicate this process. The documentary does not explain Mr. Tammet's methods, which he maintains are simply more revelation than calculation. But something in the way that Mr. Tammet describes the beautiful, aching, hallucinatory process of arriving at his answers illuminates the excitement of all cogitation. The film takes an enthusiastic, fascinated approach to savantism that gives viewers what we want: the chance to enjoy the spectacle of great intelligence.
One of nine children, Mr. Tammet grew up counting numbers in hopscotch and studying leaves. Here he tells Dr. Simon Baron-Cohen -- an autism researcher and a cousin of Sacha Baron Cohen, television's Ali G -- bullies ''didn't know how to tease me'' because he had enough social skills to get by. So they left him to his studies, and eventually he started learning languages, memorizing things and delighting people with the huge calculations he could do in his head. Mr. Baron-Cohen concludes that his autistic symptoms are not interfering with his life.
Mr. Tammet meets Kim Peek, the American savant on whom Dustin Hoffman's character in ''Rain Man'' was based. They hit it off, with Mr. Peek telling Mr. Tammet, ''One day you'll be as great as I am.''
The documentary also subjects Mr. Tammet to a series of tests intended to amaze viewers and convince scientists that he's not, somehow, cheating. When, after only a week of language study, he appears on Icelandic television, chatting in the native tongue like a pro, the skeptics appear to be silenced. Part of what Mr. Tammet tells his interviewers is how beautiful Icelandic is. This does not appear to be mere courtesy. For Mr. Tammet, beauty is a significant component of thinking. In the most affecting scene in the documentary, he dreamily describes the aesthetic merits of numerals.
The number 1 he's drawn to for its brightness. ''Two is kind of like a movement, right to left, kind of like a drifting,'' he says. Five is a clap of thunder or the sound of a wave hitting a rock. Six ''is actually the number I find hardest to experience,'' he says. ''It's like a hole, or a chasm. Number 9 is the biggest number. It's very tall.'' He seems frightened for an instant. ''It can be intimidating.''
Later in the film, Mr. Tammet visits New York City, where he stands -- dutifully, for the cameras -- in Times Square. We've been told that Mr. Tammet, who is remarkably well adjusted, nonetheless dislikes flashing lights and noise.
He does seem to be facing some kind of sublimity, though it's apparently not the crowds or the Broadway street life that excites him. ''The number 9 is all around me,'' he says.
''I'm seeing things in my head like little sparks firing off,'' Mr. Tammet, a 26-year-old Englishman, says tonight on ''Brainman,'' on the Science Channel. ''And it's not until the very last moment that those sparks tell me what on earth they mean.''
Sounds spooky, right? And to be sure, if the sparks told Mr. Tammet that he had a message for the bats, or that his hair was lonely, he might have come across as just another delusional solipsist. But Mr. Tammet's sparks are mightier than the usual sparks: They give him not bat-words, but pi to the 22,500th place and the capacity to learn whole languages in a week. He's not only a savant but also a warm and communicative man; he has the ability, rare in savants, to describe how his esoteric knowledge visits him.
After reeling off the answers to warm-up questions -- say, what's 37 to the 4th power? -- Mr. Tammet fields inquiries about the way he pokes the table while he's coming up with answers (1,874,161, say).
''I'm seeing the numbers,'' he explains. ''But I'm not seeing them. It's strange. I'm seeing pictures, shapes and patterns. Almost like a square, like the texture of water. Drops -- ripples, almost. Like something reflective. It's something you can look through, almost metallic. Like bubbles. Then a bit like a flash.''
Good luck boosting your learning power by trying to replicate this process. The documentary does not explain Mr. Tammet's methods, which he maintains are simply more revelation than calculation. But something in the way that Mr. Tammet describes the beautiful, aching, hallucinatory process of arriving at his answers illuminates the excitement of all cogitation. The film takes an enthusiastic, fascinated approach to savantism that gives viewers what we want: the chance to enjoy the spectacle of great intelligence.
One of nine children, Mr. Tammet grew up counting numbers in hopscotch and studying leaves. Here he tells Dr. Simon Baron-Cohen -- an autism researcher and a cousin of Sacha Baron Cohen, television's Ali G -- bullies ''didn't know how to tease me'' because he had enough social skills to get by. So they left him to his studies, and eventually he started learning languages, memorizing things and delighting people with the huge calculations he could do in his head. Mr. Baron-Cohen concludes that his autistic symptoms are not interfering with his life.
Mr. Tammet meets Kim Peek, the American savant on whom Dustin Hoffman's character in ''Rain Man'' was based. They hit it off, with Mr. Peek telling Mr. Tammet, ''One day you'll be as great as I am.''
The documentary also subjects Mr. Tammet to a series of tests intended to amaze viewers and convince scientists that he's not, somehow, cheating. When, after only a week of language study, he appears on Icelandic television, chatting in the native tongue like a pro, the skeptics appear to be silenced. Part of what Mr. Tammet tells his interviewers is how beautiful Icelandic is. This does not appear to be mere courtesy. For Mr. Tammet, beauty is a significant component of thinking. In the most affecting scene in the documentary, he dreamily describes the aesthetic merits of numerals.
The number 1 he's drawn to for its brightness. ''Two is kind of like a movement, right to left, kind of like a drifting,'' he says. Five is a clap of thunder or the sound of a wave hitting a rock. Six ''is actually the number I find hardest to experience,'' he says. ''It's like a hole, or a chasm. Number 9 is the biggest number. It's very tall.'' He seems frightened for an instant. ''It can be intimidating.''
Later in the film, Mr. Tammet visits New York City, where he stands -- dutifully, for the cameras -- in Times Square. We've been told that Mr. Tammet, who is remarkably well adjusted, nonetheless dislikes flashing lights and noise.
He does seem to be facing some kind of sublimity, though it's apparently not the crowds or the Broadway street life that excites him. ''The number 9 is all around me,'' he says.
Thursday, February 19, 2009
Inside the mind of an autistic genius
Daniel Tammet likes to call himself a high-functioning autistic savant. That means his brain is capable of learning a foreign language in a week and memorising vast chains of numbers perfectly
I would be lying if I said that I didn't expect Daniel Tammet to be at least a little odd. He has Asperger's, a form of autism, and is a savant with a talent for languages and numbers. This is a man who taught himself
Icelandic in a week and once recited the first 22,514 digits of pi - from memory. For those of us who knew pi was infinite but never really got beyond 3.14, it all seems, well, almost alien. He hates that idea. Daniel thinks savants get a bad press and it is true that the only really famous savant is Raymond Babbitt, the hopeless but engaging genius of the film Rain Man. Daniel has been called the British Rain Man but bridles at the comparison. As he has said, he has a partner, a job, friends. “How could I be considered a Rain Man?”
Daniel is 29 (a prime number and therefore, for him, good) and, the moment we meet, I can see he is no Rain Man. He may have grown up in the East End, one of nine children, lonely and odd. But, over the years, he has taught himself, with amazing pertinacity, to behave “normally” and now, I have to say, he's almost cracked it. “Savants have been seen as something supernatural or alien,” he says, almost as we shake hands (a learnt behaviour for him). “We have been marginalised and mysticised. But people like myself are very much human.”
He gives a little smile and, for someone like him (Aspergerians often do not show emotion), this is the equivalent of a church peal. His voice, as light as his handshake, seems continental or, I note, a bit Eurotrash. He doesn't blink an eye (he is looking straight at me, another learnt behaviour). How did that happen to an East Ender? Well, he says, he now lives in Avignon, where the French also think his accent has a continental twang.
Why Avignon? “I fell in love,” he says. He met his partner Jerome while promoting his bestselling autobiography Born on a Blue Day a few years ago. Before its publication Daniel lived a quiet life, a rigid existence aimed at calming his many anxieties. “I was very happy but it was a small happiness,” he says. With Jerome, though, his life has changed. His new book, Embracing the Wide Sky, is, as its subtitle says, a tour of the horizons of the human mind. It is about liberating our brains and he agrees that this also reflects his new life.
I ask first about numbers, which, for many people, including me, make them feel stupid, not free. Daniel imbues all numbers with meaning and he loves primes. “But all numbers are beautiful,” he says. “All have a kind of beauty.”
Well, I say, what about 338. That is the address of his publisher, where we are meeting. That's not prime.
“It's not. It's twice 13 squared.”
Is it? My brain races and comes up with...nothing.
“You can really only understand numbers in the context of other numbers. Numbers belong to clusters of meaning. What I do with numbers, when I am visualising them, allows me to put them into a context. People do the same with language. This is one of the similarities between how savants and non-savants work.”
Hmm, I say, thinking, I have no idea what you are talking about.
“For me 338 is only understandable when in terms of 13. You take 13, which is prime, and you multiply it by itself, which is a square, and that makes 169 and when you double it you get 338. I knew that immediately. I am able to visualise these associations: 13 would be a wavy number, 169 would be like a waterfall. Take that waviness and multiplying it into a waterfall; double a number would be to curl it around in my mind so 338 is like a waterfall that curls and loops in your mind.”
Well, I say, trying to imagine a curly looping waterfall, can we all learn to do this? He nods. He says that nonsavants do the same with language. When we hear the word “giraffe”, we immediately link it with words like neck, tall, animal. “It's exactly the same with me with 338. The only difference, then, really is that you are able to visualise words but not numbers and I am able to do both.”
I like the “only” in that sentence but, still, it is fascinating. But then that's Daniel. He is slight, soft spoken, unemotional. If I were to visualise him it would be as a piece of tin glinting in the sunlight: his ideas are sharp but you can almost see his brain bending at times. But then, he's had to be flexible. Otherwise he'd be living in his own world, not ours.
Daniel Tammet was born on January 31, 1979. He knows it's a Wednesday because he sees it as blue and all Wednesdays are. He calls his childhood “difficult”, a major understatement. As an infant he cried incessantly, as a young child he hardly spoke. At 4 he had an epileptic fit. He was the first of nine children. One of Daniel's brothers also has Asperger's, a high-functioning type of autism, but is not a savant as well. His father was a factory worker who battled with schizophrenia for much of his adult life.
Asperger's wasn't diagnosed until Daniel was 25 and so, at school, he got by as best he could. His talents for maths and languages did not compensate for his inability to socialise. His world was complex, bedevilled by small things: even brushing his teeth was problematical as he couldn't bear the scratchy noise and could only do so in short bursts and with parental help.
Plus he was gay. He says that from the age of 11, he knew he was attracted more to boys than girls but, perilously shy, he did not act on it. His first real relationship did not occur until after he'd left school and spent a year teaching English in Lithuania. He met Neil, his first love, on the internet.
Since adolescence, Daniel had set his mind to be normal. This was a leap of faith and, for him, acutely uncomfortable. It helped to have a large family but, at school, he also watched children in the playground “like David Attenborough, trying to look at a world that I didn't belong in yet”. It is this that sets him apart. There are about 50 other savants like him in the world, but Daniel, rarely, can tell us about it. This is what he started to do. He did a documentary. He met scientists. He did his pi feat (it only took a few weeks, he visualises such incredible number chains as landscapes). Famously, he learnt Icelandic in a week (he knows 12 languages and speaks English, French, German, Icelandic and Esperanto fluently). So how did he do it? “I immersed myself. I was given a tutor. I had lots of books. I wouldn't recommend it for most people. It was for a documentary.”
I make a small joke about Iceland's current predicament. He looks at me blankly. Humour is not natural Aspergian territory. Nor is embarrassment. At one point, when he tells me how pleased he is that a book reviewer has said he writes like Hemingway, I say that most people would be too embarrassed to say that. “I don't have any embarrassment. This is a trait, perhaps, of Asperger's.”
There is a quantum leap between the Daniel of his autobiography, published in 2006, and this book of ideas and insights. Then Daniel had been living in a Kent cul-de-sac, his life quiet and ordered. He ate exactly 45g of porridge every morning (weighed on an electronic scale) and counted the number of items of clothing he wore. When stressed, he closed his eyes and began to count (multiplying by two was especially calming). At the end of the first book, he writes about how much he enjoys cutting recipes in half.
“That feels a bit like a past life,” he says. And it is. He looks back on the pi feat as part of a “performing seal” phase. His life is much less prescribed, his coping skills improved (but, again, he has worked at it). He forces himself to endure being uncomfortable: even his interview with me would have been difficult. He gives falling in love with Jerome, a photographer he met in Paris on a publicity shoot, the credit. Buoyed by the response to his autobiography, he has embraced writing. It's an intellectually questing life, beyond recipes.
Our conversation keeps coming back to numbers. He says that maths is taught badly, rigidly. We are obsessed with achieving the “right” answer. We should estimate more, trust our instincts. Apparently we are born with an instinct for counting. If you tell pre-school children that John has 15 sweets and is given 17 more and that Susan has 51 sweets, three out of four will give the right answer when asked who has the most. Daniel believes his abilities are an outgrowth of such natural instincts.
As Daniel talks about numbers, they emerge like Mr Men characters: 4 (his favourite number) is shy like him as a child; 6 is cold and small. This process of giving numbers personalities is similar to the revolutionary teaching methods of Stella Baruk who, in France, is known as the “maths fairy”. It sounds more fun than all those sums.
Daniel insists that we all start with “great minds”. But does he really think so? Aren't some people just thick? “I totally disagree. I think everyone has amazing abilities. It is just a case of context. If you think about gossip. If you think about recognising faces. People on the autistic spectrum find that very difficult. We have been led down the wrong path that the mind is more and more like a computer. But it is completely opposite. Savants, rather than exemplifying the computer likeness of the mind, do the opposite. I love numbers. I love language. I dance with numbers rather than crunch them. Similarly with language. When I think of language I think of beautiful architectures of meaning. A computer can't do that.”
He is restless and ambitious. He likes the idea of turning 30. “Twenty-nine is prime. Thirty-one is prime. I like being between primes.” He is writing a book on faith (he is a Christian) and then he wants to write a novel. He knows that he is gifted but that is not enough: it is his desire to be ranked among the great minds. “But that's for me to demonstrate. I've made a good start but I'm very young and I've got many things to do.”
He stops, his eyes fixed on me. “I know that people can take the wrong impression. I don't mean to say how amazing I am but I've always been stung by the idea that I am a performing seal and I'm only interesting in terms of my ability to learn things quickly. I think people underestimate savants, but they underestimate themselves as well. If I can do amazing things, it's because I'm human. It's because, as Shakespeare said, we're all the stuff of dreams.”
I would be lying if I said that I didn't expect Daniel Tammet to be at least a little odd. He has Asperger's, a form of autism, and is a savant with a talent for languages and numbers. This is a man who taught himself
Icelandic in a week and once recited the first 22,514 digits of pi - from memory. For those of us who knew pi was infinite but never really got beyond 3.14, it all seems, well, almost alien. He hates that idea. Daniel thinks savants get a bad press and it is true that the only really famous savant is Raymond Babbitt, the hopeless but engaging genius of the film Rain Man. Daniel has been called the British Rain Man but bridles at the comparison. As he has said, he has a partner, a job, friends. “How could I be considered a Rain Man?”
Daniel is 29 (a prime number and therefore, for him, good) and, the moment we meet, I can see he is no Rain Man. He may have grown up in the East End, one of nine children, lonely and odd. But, over the years, he has taught himself, with amazing pertinacity, to behave “normally” and now, I have to say, he's almost cracked it. “Savants have been seen as something supernatural or alien,” he says, almost as we shake hands (a learnt behaviour for him). “We have been marginalised and mysticised. But people like myself are very much human.”
He gives a little smile and, for someone like him (Aspergerians often do not show emotion), this is the equivalent of a church peal. His voice, as light as his handshake, seems continental or, I note, a bit Eurotrash. He doesn't blink an eye (he is looking straight at me, another learnt behaviour). How did that happen to an East Ender? Well, he says, he now lives in Avignon, where the French also think his accent has a continental twang.
Why Avignon? “I fell in love,” he says. He met his partner Jerome while promoting his bestselling autobiography Born on a Blue Day a few years ago. Before its publication Daniel lived a quiet life, a rigid existence aimed at calming his many anxieties. “I was very happy but it was a small happiness,” he says. With Jerome, though, his life has changed. His new book, Embracing the Wide Sky, is, as its subtitle says, a tour of the horizons of the human mind. It is about liberating our brains and he agrees that this also reflects his new life.
I ask first about numbers, which, for many people, including me, make them feel stupid, not free. Daniel imbues all numbers with meaning and he loves primes. “But all numbers are beautiful,” he says. “All have a kind of beauty.”
Well, I say, what about 338. That is the address of his publisher, where we are meeting. That's not prime.
“It's not. It's twice 13 squared.”
Is it? My brain races and comes up with...nothing.
“You can really only understand numbers in the context of other numbers. Numbers belong to clusters of meaning. What I do with numbers, when I am visualising them, allows me to put them into a context. People do the same with language. This is one of the similarities between how savants and non-savants work.”
Hmm, I say, thinking, I have no idea what you are talking about.
“For me 338 is only understandable when in terms of 13. You take 13, which is prime, and you multiply it by itself, which is a square, and that makes 169 and when you double it you get 338. I knew that immediately. I am able to visualise these associations: 13 would be a wavy number, 169 would be like a waterfall. Take that waviness and multiplying it into a waterfall; double a number would be to curl it around in my mind so 338 is like a waterfall that curls and loops in your mind.”
Well, I say, trying to imagine a curly looping waterfall, can we all learn to do this? He nods. He says that nonsavants do the same with language. When we hear the word “giraffe”, we immediately link it with words like neck, tall, animal. “It's exactly the same with me with 338. The only difference, then, really is that you are able to visualise words but not numbers and I am able to do both.”
I like the “only” in that sentence but, still, it is fascinating. But then that's Daniel. He is slight, soft spoken, unemotional. If I were to visualise him it would be as a piece of tin glinting in the sunlight: his ideas are sharp but you can almost see his brain bending at times. But then, he's had to be flexible. Otherwise he'd be living in his own world, not ours.
Daniel Tammet was born on January 31, 1979. He knows it's a Wednesday because he sees it as blue and all Wednesdays are. He calls his childhood “difficult”, a major understatement. As an infant he cried incessantly, as a young child he hardly spoke. At 4 he had an epileptic fit. He was the first of nine children. One of Daniel's brothers also has Asperger's, a high-functioning type of autism, but is not a savant as well. His father was a factory worker who battled with schizophrenia for much of his adult life.
Asperger's wasn't diagnosed until Daniel was 25 and so, at school, he got by as best he could. His talents for maths and languages did not compensate for his inability to socialise. His world was complex, bedevilled by small things: even brushing his teeth was problematical as he couldn't bear the scratchy noise and could only do so in short bursts and with parental help.
Plus he was gay. He says that from the age of 11, he knew he was attracted more to boys than girls but, perilously shy, he did not act on it. His first real relationship did not occur until after he'd left school and spent a year teaching English in Lithuania. He met Neil, his first love, on the internet.
Since adolescence, Daniel had set his mind to be normal. This was a leap of faith and, for him, acutely uncomfortable. It helped to have a large family but, at school, he also watched children in the playground “like David Attenborough, trying to look at a world that I didn't belong in yet”. It is this that sets him apart. There are about 50 other savants like him in the world, but Daniel, rarely, can tell us about it. This is what he started to do. He did a documentary. He met scientists. He did his pi feat (it only took a few weeks, he visualises such incredible number chains as landscapes). Famously, he learnt Icelandic in a week (he knows 12 languages and speaks English, French, German, Icelandic and Esperanto fluently). So how did he do it? “I immersed myself. I was given a tutor. I had lots of books. I wouldn't recommend it for most people. It was for a documentary.”
I make a small joke about Iceland's current predicament. He looks at me blankly. Humour is not natural Aspergian territory. Nor is embarrassment. At one point, when he tells me how pleased he is that a book reviewer has said he writes like Hemingway, I say that most people would be too embarrassed to say that. “I don't have any embarrassment. This is a trait, perhaps, of Asperger's.”
There is a quantum leap between the Daniel of his autobiography, published in 2006, and this book of ideas and insights. Then Daniel had been living in a Kent cul-de-sac, his life quiet and ordered. He ate exactly 45g of porridge every morning (weighed on an electronic scale) and counted the number of items of clothing he wore. When stressed, he closed his eyes and began to count (multiplying by two was especially calming). At the end of the first book, he writes about how much he enjoys cutting recipes in half.
“That feels a bit like a past life,” he says. And it is. He looks back on the pi feat as part of a “performing seal” phase. His life is much less prescribed, his coping skills improved (but, again, he has worked at it). He forces himself to endure being uncomfortable: even his interview with me would have been difficult. He gives falling in love with Jerome, a photographer he met in Paris on a publicity shoot, the credit. Buoyed by the response to his autobiography, he has embraced writing. It's an intellectually questing life, beyond recipes.
Our conversation keeps coming back to numbers. He says that maths is taught badly, rigidly. We are obsessed with achieving the “right” answer. We should estimate more, trust our instincts. Apparently we are born with an instinct for counting. If you tell pre-school children that John has 15 sweets and is given 17 more and that Susan has 51 sweets, three out of four will give the right answer when asked who has the most. Daniel believes his abilities are an outgrowth of such natural instincts.
As Daniel talks about numbers, they emerge like Mr Men characters: 4 (his favourite number) is shy like him as a child; 6 is cold and small. This process of giving numbers personalities is similar to the revolutionary teaching methods of Stella Baruk who, in France, is known as the “maths fairy”. It sounds more fun than all those sums.
Daniel insists that we all start with “great minds”. But does he really think so? Aren't some people just thick? “I totally disagree. I think everyone has amazing abilities. It is just a case of context. If you think about gossip. If you think about recognising faces. People on the autistic spectrum find that very difficult. We have been led down the wrong path that the mind is more and more like a computer. But it is completely opposite. Savants, rather than exemplifying the computer likeness of the mind, do the opposite. I love numbers. I love language. I dance with numbers rather than crunch them. Similarly with language. When I think of language I think of beautiful architectures of meaning. A computer can't do that.”
He is restless and ambitious. He likes the idea of turning 30. “Twenty-nine is prime. Thirty-one is prime. I like being between primes.” He is writing a book on faith (he is a Christian) and then he wants to write a novel. He knows that he is gifted but that is not enough: it is his desire to be ranked among the great minds. “But that's for me to demonstrate. I've made a good start but I'm very young and I've got many things to do.”
He stops, his eyes fixed on me. “I know that people can take the wrong impression. I don't mean to say how amazing I am but I've always been stung by the idea that I am a performing seal and I'm only interesting in terms of my ability to learn things quickly. I think people underestimate savants, but they underestimate themselves as well. If I can do amazing things, it's because I'm human. It's because, as Shakespeare said, we're all the stuff of dreams.”
Wednesday, January 14, 2009
If we screen out autism we run the risk of losing genius, too
As the number of disorders identifiable by prenatal testing grows, the debate about how to handle them is intensifying
Magnus Linklater
Robin was sitting in the classroom, giving me an exact account of the Russian Revolution. It was his specialist subject and he knew every date, every manoeuvre, the names of the Bolshevik leaders, and where they were when the Winter Palace was stormed. Robin was 16.
“So, what do you think of Lenin?” I asked. He looked at me blankly. “I don't think anything of Lenin,” he said. Robin was autistic.
He had an extraordinary grasp of facts, meticulously arranged in his mind. He had no concept of analysis or interpretation. The idea of forming an opinion was alien to him. With that incapacity came social isolation, an inability to form friendships or any lasting relationship. He was stranded, with his brilliant but disabled mind. Bringing him up had been a constant strain for his parents.
Quite how he would fare in the wider world was not yet clear.
Robin, and thousands like him, are at the centre of an ethical debate with far-reaching consequences. Within a few years it may become possible for expectant mothers to have prenatal tests to determine if their child is likely to be autistic.
These may be genetic, to see whether the characteristics of autism have been inherited, or tests of amniotic fluid in the womb to detect high levels of testosterone that have been found to be associated with the condition - mainly in boys.
As the parents of the first British baby screened to be free of a breast cancer gene celebrate the birth of a healthy daughter, this must seem yet another miraculous step in the advance of science. For any family that has experienced the anguish of living with an autistic child, the prospect of being able to determine if another is about to be born would be invaluable. It would offer that most precious commodity - a choice.
Just as with Down's syndrome, cystic fibrosis or spina bifida, a mother-to-be could decide whether she can cope with the strain of bringing up a disabled child. With an autistic child, it may mean a lifetime of rejection - living with someone unlikely ever to fit into the family, who responds with blank incomprehension to affection, whose behaviour may be erratic and disturbing, whose condition is permanent. Autism, and its associated condition, Asperger's syndrome, can range from virtual incapacity at one end of the spectrum to the merely strange at the other. To bring up one autistic child is a challenge to the sanity of an entire family. To bring up two might destroy it.
The evidence of Down's syndrome suggests that very high numbers of mothers-to-be opt for an abortion if pre-natal tests show that their child has the condition. In America it is as a high as 90 per cent. In Britain, it is not so high and may be reversing - as knowledge grows, perhaps more mothers elect to keep their babies. There is, however, a critical difference between Down's and autism, highlighted by Professor Simon Baron-Cohen, director of the Autism Research Centre at Cambridge. He points out that autistic males often turn out to be skilled at mathematics and engineering - some reaching near-genius level. Almost all the mathematical giants of the past have been male. He says that Newton and Einstein were almost certainly autistic, finding relationships difficult. Artists, too, have suffered from autism or Asperger's - including the blind pianist Derek Paravicini, the artist Peter Howson and, reportedly, the film director Steven Spielberg. So if we found a test for autism, and gave parents the opportunity of aborting the foetus, we might eliminate not just an unwanted and difficult child but a potential genius.
Here lies the dilemma. Should medical science offer the opportunity to eliminate a child who may turn out to be, not only a valuable member of society, but an important contributor to its future? And here lies a further twist in the moral maze. If that were the decision, what would be the justification for deciding that only the most intelligent members of society should be protected, while the less able were judged expendable. Does not that come close to Nazi-style eugenics, the one aspect of genetic engineering we have all determined will never again be contemplated?
Professor Baron-Cohen says that we must debate these matters now, before even the possibility of a test becomes a reality. I have no doubt he is right. But I am far from clear which side we should be on.
Every human instinct must surely be against some form of national screening that would offer the opportunity to breed out the wild, the eccentric, the sometimes weird, crazed individualists who break free of routine constraints and offer the diversity on which we thrive. Can we afford to lose a future Einstein?
There is a deeper strain to the debate. Who is to judge where lies the dividing line between madness and norm? As Kamran Nazeer so brilliantly described in Prospect magazine last year, it is possible to convert the apparent drawbacks of autism into an ideal - to learn the art of conversation, for instance, and to become as adept at it as a “normal” member of society.
As the father of a bipolar son, whose understanding of his own condition and whose empathy with his fellow human beings far surpasses my own, I claim no superiority of intelligence when it comes to deciding who is rational and who not. So I shrink instinctively from any notion that we should be given the opportunity of discarding a future human being simply because he or she may be an inconvenience.
If that means holding back science or our knowledge of genetics, even at the expense of suffering families, I think it a price worth paying. To interfere with the natural diversity of the human race runs the risk of impeding natural selection itself. And that, in Darwin's bicentenary, would be a backward step.
Magnus Linklater
Robin was sitting in the classroom, giving me an exact account of the Russian Revolution. It was his specialist subject and he knew every date, every manoeuvre, the names of the Bolshevik leaders, and where they were when the Winter Palace was stormed. Robin was 16.
“So, what do you think of Lenin?” I asked. He looked at me blankly. “I don't think anything of Lenin,” he said. Robin was autistic.
He had an extraordinary grasp of facts, meticulously arranged in his mind. He had no concept of analysis or interpretation. The idea of forming an opinion was alien to him. With that incapacity came social isolation, an inability to form friendships or any lasting relationship. He was stranded, with his brilliant but disabled mind. Bringing him up had been a constant strain for his parents.
Quite how he would fare in the wider world was not yet clear.
Robin, and thousands like him, are at the centre of an ethical debate with far-reaching consequences. Within a few years it may become possible for expectant mothers to have prenatal tests to determine if their child is likely to be autistic.
These may be genetic, to see whether the characteristics of autism have been inherited, or tests of amniotic fluid in the womb to detect high levels of testosterone that have been found to be associated with the condition - mainly in boys.
As the parents of the first British baby screened to be free of a breast cancer gene celebrate the birth of a healthy daughter, this must seem yet another miraculous step in the advance of science. For any family that has experienced the anguish of living with an autistic child, the prospect of being able to determine if another is about to be born would be invaluable. It would offer that most precious commodity - a choice.
Just as with Down's syndrome, cystic fibrosis or spina bifida, a mother-to-be could decide whether she can cope with the strain of bringing up a disabled child. With an autistic child, it may mean a lifetime of rejection - living with someone unlikely ever to fit into the family, who responds with blank incomprehension to affection, whose behaviour may be erratic and disturbing, whose condition is permanent. Autism, and its associated condition, Asperger's syndrome, can range from virtual incapacity at one end of the spectrum to the merely strange at the other. To bring up one autistic child is a challenge to the sanity of an entire family. To bring up two might destroy it.
The evidence of Down's syndrome suggests that very high numbers of mothers-to-be opt for an abortion if pre-natal tests show that their child has the condition. In America it is as a high as 90 per cent. In Britain, it is not so high and may be reversing - as knowledge grows, perhaps more mothers elect to keep their babies. There is, however, a critical difference between Down's and autism, highlighted by Professor Simon Baron-Cohen, director of the Autism Research Centre at Cambridge. He points out that autistic males often turn out to be skilled at mathematics and engineering - some reaching near-genius level. Almost all the mathematical giants of the past have been male. He says that Newton and Einstein were almost certainly autistic, finding relationships difficult. Artists, too, have suffered from autism or Asperger's - including the blind pianist Derek Paravicini, the artist Peter Howson and, reportedly, the film director Steven Spielberg. So if we found a test for autism, and gave parents the opportunity of aborting the foetus, we might eliminate not just an unwanted and difficult child but a potential genius.
Here lies the dilemma. Should medical science offer the opportunity to eliminate a child who may turn out to be, not only a valuable member of society, but an important contributor to its future? And here lies a further twist in the moral maze. If that were the decision, what would be the justification for deciding that only the most intelligent members of society should be protected, while the less able were judged expendable. Does not that come close to Nazi-style eugenics, the one aspect of genetic engineering we have all determined will never again be contemplated?
Professor Baron-Cohen says that we must debate these matters now, before even the possibility of a test becomes a reality. I have no doubt he is right. But I am far from clear which side we should be on.
Every human instinct must surely be against some form of national screening that would offer the opportunity to breed out the wild, the eccentric, the sometimes weird, crazed individualists who break free of routine constraints and offer the diversity on which we thrive. Can we afford to lose a future Einstein?
There is a deeper strain to the debate. Who is to judge where lies the dividing line between madness and norm? As Kamran Nazeer so brilliantly described in Prospect magazine last year, it is possible to convert the apparent drawbacks of autism into an ideal - to learn the art of conversation, for instance, and to become as adept at it as a “normal” member of society.
As the father of a bipolar son, whose understanding of his own condition and whose empathy with his fellow human beings far surpasses my own, I claim no superiority of intelligence when it comes to deciding who is rational and who not. So I shrink instinctively from any notion that we should be given the opportunity of discarding a future human being simply because he or she may be an inconvenience.
If that means holding back science or our knowledge of genetics, even at the expense of suffering families, I think it a price worth paying. To interfere with the natural diversity of the human race runs the risk of impeding natural selection itself. And that, in Darwin's bicentenary, would be a backward step.
Saturday, November 15, 2008
My life with Asperger's
This article is from TheSite.org.Please follow this link if you want to read more.
http://www.thesite.org/community/reallife/truestories/aspergersyndrome
Stephen, 22, hasn't let having Asperger Syndrome get in the way of achieving success. He tells TheSite.org about his daily struggle to lead a normal life and how he couldn't have done it without the support and help of various people.
Asperger Syndrome (AS) is a condition which very few people understand clearly. Unless you have in some way been affected by it yourself, it's very difficult to figure out how a person with Asperger's operates. I was first diagnosed with the condition when I was 13 years-old; however, I'm finding that it's having a greater effect on my life as I get older. AS is a part of the Autistic spectrum, so a person with the disorder is likely to have great difficulty in social interaction and understanding the 'unwritten rules' that are taken for granted. They may also follow a set routine and experience anxiety when this is broken. Additionally the condition can have an affect on physical co-ordination, yet someone's level of intelligence is usually average or above average.
Feeling different
Looking back at my time in secondary school I realise that I was somewhat different to my peers. I usually preferred to be with one or two other people rather than in a larger group. I talked about my own interests to excess and didn't recognise the signs that others were perhaps less interested. Sport wasn't one of my strengths and I found games such as football, tennis and cricket a chore, rather than a pleasure. Anxiety affected me the most and continues to do so - I worried extensively when faced with a new or uncomfortable situation. I feared the idea of getting into trouble more than most and because of this was more concerned about making mistakes. Subsequently I developed the reputation of being a 'goody-goody'.
Thankfully there weren't too many incidents of bullying, largely because I was somewhat protected at school and any problems were swiftly dealt with. Later on, school exams and the fear of failure were a big issue for me. I have nothing but praise for the support I received during my GCSEs and with help I was able to come up with an effective revision timetable and could regularly talk to teachers about any concerns I had. When I finally got my results and discovered that all my grades were A to Cs, I was delighted. It made me realise for the first time just what I was capable of achieving.
"I feared the idea of getting into trouble more than most and because of this was more concerned about making mistakes. Subsequently I developed the reputation of being a 'goody-goody'."
The pressure to succeed
After completing my A-Levels I went to Kingston University, but although I was still living at home, I found the experience especially challenging as I was expected to socialise with a completely new set of faces. The first couple of years were relatively straightforward and I became more confident in my abilities and was able to voice my views more regularly. The nature of the work sometimes required me to interview strangers outside the university and although this seemed daunting at first, I was able to perform the tasks with relative ease. The third year of uni was a lot more challenging because of the added pressure and it was at this point that I experienced severe anxiety, which I could not always control. After visiting a psychiatrist I was diagnosed with depression. There were talks of putting my degree on hold whilst I recovered and graduating later than the others, but I refused to contemplate this option and insisted that I finish on schedule. I graduated in 2007 with a 2:1 in Criminology and Film Studies. This was another occasion when I had proved to myself that I was capable of more than I had initially thought possible. Despite some serious setbacks I had achieved my goal.
Finding a job
I'm now possibly facing my biggest challenge of finding a career and competing in the adult world. So far, I must admit, it's not been easy. I've attended several interviews and many were unsuccessful. To earn a bit of extra money I have done a variety of temporary jobs, some of which have been extremely menial. Subsequently my confidence has gone up and down in the last year and the sense of frustration has at times been unbearable. With the help of the National Autistic Society I've been able to focus and think about what I want to do in the long-term. I'm currently preparing to do a post-graduate diploma in Journalism and I'm building up my portfolio by working at the local paper once a week.
I would also say that I've improved socially over the last three years, but I still have a fair way to go. I'm now a lot more vocal than I was a few years ago, although I often remain unsure of myself when meeting new people. Subsequently this has affected my ability to form potential relationships and I'm aware that this will take time to conquer. Having more understanding about the effects of AS has certainly helped me to come to terms with the condition. One thing I've learned is that with the right help and support someone with Asperger's can enjoy a fulfilled and successful life.
http://www.thesite.org/community/reallife/truestories/aspergersyndrome
Stephen, 22, hasn't let having Asperger Syndrome get in the way of achieving success. He tells TheSite.org about his daily struggle to lead a normal life and how he couldn't have done it without the support and help of various people.
Asperger Syndrome (AS) is a condition which very few people understand clearly. Unless you have in some way been affected by it yourself, it's very difficult to figure out how a person with Asperger's operates. I was first diagnosed with the condition when I was 13 years-old; however, I'm finding that it's having a greater effect on my life as I get older. AS is a part of the Autistic spectrum, so a person with the disorder is likely to have great difficulty in social interaction and understanding the 'unwritten rules' that are taken for granted. They may also follow a set routine and experience anxiety when this is broken. Additionally the condition can have an affect on physical co-ordination, yet someone's level of intelligence is usually average or above average.
Feeling different
Looking back at my time in secondary school I realise that I was somewhat different to my peers. I usually preferred to be with one or two other people rather than in a larger group. I talked about my own interests to excess and didn't recognise the signs that others were perhaps less interested. Sport wasn't one of my strengths and I found games such as football, tennis and cricket a chore, rather than a pleasure. Anxiety affected me the most and continues to do so - I worried extensively when faced with a new or uncomfortable situation. I feared the idea of getting into trouble more than most and because of this was more concerned about making mistakes. Subsequently I developed the reputation of being a 'goody-goody'.
Thankfully there weren't too many incidents of bullying, largely because I was somewhat protected at school and any problems were swiftly dealt with. Later on, school exams and the fear of failure were a big issue for me. I have nothing but praise for the support I received during my GCSEs and with help I was able to come up with an effective revision timetable and could regularly talk to teachers about any concerns I had. When I finally got my results and discovered that all my grades were A to Cs, I was delighted. It made me realise for the first time just what I was capable of achieving.
"I feared the idea of getting into trouble more than most and because of this was more concerned about making mistakes. Subsequently I developed the reputation of being a 'goody-goody'."
The pressure to succeed
After completing my A-Levels I went to Kingston University, but although I was still living at home, I found the experience especially challenging as I was expected to socialise with a completely new set of faces. The first couple of years were relatively straightforward and I became more confident in my abilities and was able to voice my views more regularly. The nature of the work sometimes required me to interview strangers outside the university and although this seemed daunting at first, I was able to perform the tasks with relative ease. The third year of uni was a lot more challenging because of the added pressure and it was at this point that I experienced severe anxiety, which I could not always control. After visiting a psychiatrist I was diagnosed with depression. There were talks of putting my degree on hold whilst I recovered and graduating later than the others, but I refused to contemplate this option and insisted that I finish on schedule. I graduated in 2007 with a 2:1 in Criminology and Film Studies. This was another occasion when I had proved to myself that I was capable of more than I had initially thought possible. Despite some serious setbacks I had achieved my goal.
Finding a job
I'm now possibly facing my biggest challenge of finding a career and competing in the adult world. So far, I must admit, it's not been easy. I've attended several interviews and many were unsuccessful. To earn a bit of extra money I have done a variety of temporary jobs, some of which have been extremely menial. Subsequently my confidence has gone up and down in the last year and the sense of frustration has at times been unbearable. With the help of the National Autistic Society I've been able to focus and think about what I want to do in the long-term. I'm currently preparing to do a post-graduate diploma in Journalism and I'm building up my portfolio by working at the local paper once a week.
I would also say that I've improved socially over the last three years, but I still have a fair way to go. I'm now a lot more vocal than I was a few years ago, although I often remain unsure of myself when meeting new people. Subsequently this has affected my ability to form potential relationships and I'm aware that this will take time to conquer. Having more understanding about the effects of AS has certainly helped me to come to terms with the condition. One thing I've learned is that with the right help and support someone with Asperger's can enjoy a fulfilled and successful life.
Thursday, July 31, 2008
College a challenge for autistic
Many surprised to find they must be their own advocates
By Melissa Kossler Dutton
Associated Press
When Dan Hackett started college, he didn't make the grades he knew he could.
Hackett, who has Asperger's syndrome, found at the Community College of Allegheny County in Pittsburgh that some of his symptoms were holding him back. He had difficulty organizing his time and managing assignments.
"I always knew I could do better," said Hackett.
His parents tried to help, but he wasn't comfortable with them intervening at college. He was relieved to discover Achieving in Higher Education with Autism/Developmental Disabilities, a group that helps college students like him.
After contracting with AHEADD, Hackett's grade-point average increased from 1.5 to 3.6.
"They kept me on track," said the now 21-year-old political science major. "They helped me manage my time."
colleges reach out
Many students with Asperger's or other autism-like disorders face new challenges in a college setting. The syndrome hampers communication and social skills, so along with difficulties staying on top of their studies, these students may struggle with making friends and living more independently. They also may be more reluctant to ask for help.
It's a problem colleges and universities are "very aware" of as the first big wave of children diagnosed with autism-related disorders moves beyond high school, said Gwendolyn Dungy, executive director of NASPA, a Washington-based organization of student affairs administrators.
"We've been very interested in it and finding out how ready colleges are for these students," she said. "We want to establish a climate for success."
While higher education institutions usually make accommodations for students with disabilities, the law does not require them to provide the extent of services that students receive in kindergarten through 12th grade.
College students must become their own advocates, a change that can take them and their families by surprise, said Donna Martinez, executive director of George Washington University's Heath Resource Center, an online clearinghouse for students with disabilities.
"It's night and day" from high school, she said.
Colleges are trying to educate faculty and staff about autism-related disorders and gauge how much services will cost, said Dungy. Most colleges already provide services to students with disabilities or special needs.
expanded definition
For decades, only children with severe language and social impairments received the autism diagnosis. In the 1990s, the autism umbrella expanded, and autism is now shorthand for a group of milder, related conditions, known as "autism spectrum disorders."
One in 166 children is now diagnosed with autism, compared to 1 in 2,500 a decade ago.
There has been a corresponding surge in special education services for autistic children in elementary and high schools. Now, some of these students are headed to college.
One college that has added services for such students is Marshall University, home to the West Virginia Autism Training Center. Through its College Program for Students with Asperger's Syndrome, graduate students help autistic students manage class assignments and develop social and living skills.
Students pay $3,200 per semester to enroll in Marshall's program. Advisers may speak with them several times a day, have weekly contact with their professors and help find them social activities. They might give guidance on dorm living or cafeteria food.
"Most classes are 50 minutes long, two to three times a day," noted program coordinator Marc Ellison. "The rest of the time, you're navigating the college community. My advice to students is to realize the least amount of time you spend in college is in the classroom."
By Melissa Kossler Dutton
Associated Press
When Dan Hackett started college, he didn't make the grades he knew he could.
Hackett, who has Asperger's syndrome, found at the Community College of Allegheny County in Pittsburgh that some of his symptoms were holding him back. He had difficulty organizing his time and managing assignments.
"I always knew I could do better," said Hackett.
His parents tried to help, but he wasn't comfortable with them intervening at college. He was relieved to discover Achieving in Higher Education with Autism/Developmental Disabilities, a group that helps college students like him.
After contracting with AHEADD, Hackett's grade-point average increased from 1.5 to 3.6.
"They kept me on track," said the now 21-year-old political science major. "They helped me manage my time."
colleges reach out
Many students with Asperger's or other autism-like disorders face new challenges in a college setting. The syndrome hampers communication and social skills, so along with difficulties staying on top of their studies, these students may struggle with making friends and living more independently. They also may be more reluctant to ask for help.
It's a problem colleges and universities are "very aware" of as the first big wave of children diagnosed with autism-related disorders moves beyond high school, said Gwendolyn Dungy, executive director of NASPA, a Washington-based organization of student affairs administrators.
"We've been very interested in it and finding out how ready colleges are for these students," she said. "We want to establish a climate for success."
While higher education institutions usually make accommodations for students with disabilities, the law does not require them to provide the extent of services that students receive in kindergarten through 12th grade.
College students must become their own advocates, a change that can take them and their families by surprise, said Donna Martinez, executive director of George Washington University's Heath Resource Center, an online clearinghouse for students with disabilities.
"It's night and day" from high school, she said.
Colleges are trying to educate faculty and staff about autism-related disorders and gauge how much services will cost, said Dungy. Most colleges already provide services to students with disabilities or special needs.
expanded definition
For decades, only children with severe language and social impairments received the autism diagnosis. In the 1990s, the autism umbrella expanded, and autism is now shorthand for a group of milder, related conditions, known as "autism spectrum disorders."
One in 166 children is now diagnosed with autism, compared to 1 in 2,500 a decade ago.
There has been a corresponding surge in special education services for autistic children in elementary and high schools. Now, some of these students are headed to college.
One college that has added services for such students is Marshall University, home to the West Virginia Autism Training Center. Through its College Program for Students with Asperger's Syndrome, graduate students help autistic students manage class assignments and develop social and living skills.
Students pay $3,200 per semester to enroll in Marshall's program. Advisers may speak with them several times a day, have weekly contact with their professors and help find them social activities. They might give guidance on dorm living or cafeteria food.
"Most classes are 50 minutes long, two to three times a day," noted program coordinator Marc Ellison. "The rest of the time, you're navigating the college community. My advice to students is to realize the least amount of time you spend in college is in the classroom."
Special education struggles in school
BUFFALO, N.Y. (WIVB) - - Young people dealing with Autism or Asperger Syndrome often face an uphill battle in the classroom. One family's struggle with schooling and takes a look at how schools handle the challenge of teaching these special students.
When Tim Miller started coming home from school in sixth grade telling his parents horror stories, they didn't know what to think.
John Miller, Tim's Father, said, "Our son was coming home and telling us the school was trying to kill him - with his communication deficits at the time he didn't know how to say he was being restrained."
John Miller says his son, who has Asperger Syndrome or a higher functioning form of autism, was being put in prone restraints when he acted out in class. Although he admits Tim, then 12, had behavioral issues, he believes the school went too far.
Tim Miller, teen with Asperger Syndrome, said, "I remember they just grabbed me and put me into the room or whatever and I remember they had the mat and just threw me to the ground."
John Miller, Tim's Father, said, "Every time they restrained my son, they were stepping outside of their training."
Summit Educational Resources CEO Dr. Stephen Anderson says in general restraints are a last resort.
Dr. Stephen Anderson, Summit Educational Resources CEO, said, "Restraint is the emergency procedure, it's the back up, it's the thing you may have to do if all else fails and there's a risk to the individual or others."
But the Millers say the restraints were just part of their problem with the Allegany-Limestone Central School District.
John Miller, Tim's Father, said, "Crucial in this whole thing are the denied services. Allegany-Limestone Central Schools I believe intentionally mis-classified my son for six years."
Miller says if Tim had been classified as autistic when he was diagnosed, he would have received the social, behavioral, and educational services he needs.
But Dr. Anderson says that may not be the case in public schools.
Dr. Stephen Anderson, Summit Educational Resources CEO, said, "If a kid is achieving academically, I'm not sure what their responsibility is after that, we'd all like them to embrace and do more, but their resources are limited as well."
He says it's a difficult balance for schools to meet the needs of children with autism or Asperger Syndrome while not disrupting the education of other children.
Dr. Stephen Anderson, Summit Educational Resources CEO, said, "I don't think school districts have ever seen this with the frequency that they're starting to see it now because they're keeping kids with more challenging behaviors within the context."
Both the Allegany-Limestone Superintendent and the school's attorney would not comment because of privacy issues and because Tim Miller's case is currently in litigation.
An impartial hearing on the matter was overturned, and it is now headed to federal court.
When Tim Miller started coming home from school in sixth grade telling his parents horror stories, they didn't know what to think.
John Miller, Tim's Father, said, "Our son was coming home and telling us the school was trying to kill him - with his communication deficits at the time he didn't know how to say he was being restrained."
John Miller says his son, who has Asperger Syndrome or a higher functioning form of autism, was being put in prone restraints when he acted out in class. Although he admits Tim, then 12, had behavioral issues, he believes the school went too far.
Tim Miller, teen with Asperger Syndrome, said, "I remember they just grabbed me and put me into the room or whatever and I remember they had the mat and just threw me to the ground."
John Miller, Tim's Father, said, "Every time they restrained my son, they were stepping outside of their training."
Summit Educational Resources CEO Dr. Stephen Anderson says in general restraints are a last resort.
Dr. Stephen Anderson, Summit Educational Resources CEO, said, "Restraint is the emergency procedure, it's the back up, it's the thing you may have to do if all else fails and there's a risk to the individual or others."
But the Millers say the restraints were just part of their problem with the Allegany-Limestone Central School District.
John Miller, Tim's Father, said, "Crucial in this whole thing are the denied services. Allegany-Limestone Central Schools I believe intentionally mis-classified my son for six years."
Miller says if Tim had been classified as autistic when he was diagnosed, he would have received the social, behavioral, and educational services he needs.
But Dr. Anderson says that may not be the case in public schools.
Dr. Stephen Anderson, Summit Educational Resources CEO, said, "If a kid is achieving academically, I'm not sure what their responsibility is after that, we'd all like them to embrace and do more, but their resources are limited as well."
He says it's a difficult balance for schools to meet the needs of children with autism or Asperger Syndrome while not disrupting the education of other children.
Dr. Stephen Anderson, Summit Educational Resources CEO, said, "I don't think school districts have ever seen this with the frequency that they're starting to see it now because they're keeping kids with more challenging behaviors within the context."
Both the Allegany-Limestone Superintendent and the school's attorney would not comment because of privacy issues and because Tim Miller's case is currently in litigation.
An impartial hearing on the matter was overturned, and it is now headed to federal court.
Tuesday, July 29, 2008
Swimmer trying to conquer Lake Ontario
By JORDAN PRESS, SUN MEDIA
The Toronto Sun
In early May, Jay Serdula dreamed that he was swimming across Lake Ontario, each stroke bringing him closer to the Toronto shoreline.
He could see the CN Tower looming larger. His body felt fresh and he was feeling good about making it ashore.
Yesterday that dream came true for the Kingston resident. Setting out from Niagara-on-the-Lake at 10 a.m., he is trying to swim across Lake Ontario to raise money and awareness for Asperger's syndrome, a disorder on the mild end of the autism spectrum that makes it difficult for people to adapt to new things.
He is scheduled to end his swim at Toronto's Marilyn Bell Park today between 3-6 p.m.
Serdula, 36, was born with Asperger's. He has prepared two years for this moment, and it's the preparation, he said, that should help him finish the swim.
"Inexperienced athletes are nervous; they focus on results. Experienced athletes focus on preparation," said Serdula, a research assistant in the chemical engineering department at Royal Military College.
"Just prepare," he said, "and the results will follow."
Serdula has been swimming since he was 7 years old. When he started competing in triathlons in 1990, his swims covered sometimes more than 2 km. The swimming portion was not his strongest leg of the event.
Serdula decided to take on Lake Ontario two years ago after following then 15-year-old Jenna Lambert's marathon swim to raise money and awareness for cerebral palsy and the Penguins swim team.
He wanted to do the same, to challenge himself and, after some coaxing from friends, he undertook the task.
On Saturday, two days before he headed to Niagara-on-the-Lake to start his swim, Serdula looked calm. On a walk near his west-end home, he sauntered along at an easy pace, talking matter-of-factly about what he had to do.
The water will bring with it cold, waves and darkness. All are things he will have to avoid focusing on to make a successful crossing, he said.
To counter those concerns, he has decided to keep feeding breaks short and spread out at specific intervals during the swim. Serdula said he figures to be fine for the first 10 hours in the water, it's the remaining hours that he expects will require him to summon more energy and therefore more food to eat.
He intends to swim freestyle -- or front crawl -- for the majority of the swim, switching to breast stroke every so often to give his shoulders a rest.
He said at night he will focus on the boat with his swim master and volunteers, who will guide the way through the darkness.
Although he tends to focus on things due to his Asperger's, Serdula said marathon swimmer Vicki Keith advised him that he should focus on the swim and not on the temperature of the water. Serdula started corresponding with Keith last summer. The veteran swimmer gave Serdula tips on speed training and indoor workouts throughout the year and now she has helped with mental preparation.
Last year, Serdula twice tried to swim for a 24-hour period. On one attempt at a friend's cottage, he said, he stayed in the water for 19 hours." I knew I could have gone on longer," Serdula said. "I knew I was ready."
The Toronto Sun
In early May, Jay Serdula dreamed that he was swimming across Lake Ontario, each stroke bringing him closer to the Toronto shoreline.
He could see the CN Tower looming larger. His body felt fresh and he was feeling good about making it ashore.
Yesterday that dream came true for the Kingston resident. Setting out from Niagara-on-the-Lake at 10 a.m., he is trying to swim across Lake Ontario to raise money and awareness for Asperger's syndrome, a disorder on the mild end of the autism spectrum that makes it difficult for people to adapt to new things.
He is scheduled to end his swim at Toronto's Marilyn Bell Park today between 3-6 p.m.
Serdula, 36, was born with Asperger's. He has prepared two years for this moment, and it's the preparation, he said, that should help him finish the swim.
"Inexperienced athletes are nervous; they focus on results. Experienced athletes focus on preparation," said Serdula, a research assistant in the chemical engineering department at Royal Military College.
"Just prepare," he said, "and the results will follow."
Serdula has been swimming since he was 7 years old. When he started competing in triathlons in 1990, his swims covered sometimes more than 2 km. The swimming portion was not his strongest leg of the event.
Serdula decided to take on Lake Ontario two years ago after following then 15-year-old Jenna Lambert's marathon swim to raise money and awareness for cerebral palsy and the Penguins swim team.
He wanted to do the same, to challenge himself and, after some coaxing from friends, he undertook the task.
On Saturday, two days before he headed to Niagara-on-the-Lake to start his swim, Serdula looked calm. On a walk near his west-end home, he sauntered along at an easy pace, talking matter-of-factly about what he had to do.
The water will bring with it cold, waves and darkness. All are things he will have to avoid focusing on to make a successful crossing, he said.
To counter those concerns, he has decided to keep feeding breaks short and spread out at specific intervals during the swim. Serdula said he figures to be fine for the first 10 hours in the water, it's the remaining hours that he expects will require him to summon more energy and therefore more food to eat.
He intends to swim freestyle -- or front crawl -- for the majority of the swim, switching to breast stroke every so often to give his shoulders a rest.
He said at night he will focus on the boat with his swim master and volunteers, who will guide the way through the darkness.
Although he tends to focus on things due to his Asperger's, Serdula said marathon swimmer Vicki Keith advised him that he should focus on the swim and not on the temperature of the water. Serdula started corresponding with Keith last summer. The veteran swimmer gave Serdula tips on speed training and indoor workouts throughout the year and now she has helped with mental preparation.
Last year, Serdula twice tried to swim for a 24-hour period. On one attempt at a friend's cottage, he said, he stayed in the water for 19 hours." I knew I could have gone on longer," Serdula said. "I knew I was ready."
Sunday, July 27, 2008
Running for a friend
By Scott O'Connell/GateHouse News Service
MetroWest Daily News
Posted Jul 26, 2008 @ 10:53 PM
WESTBOROUGH —
As a captain of the Westborough High School boys cross country team, Matt Gitkind is used to running to finish number one.
But in the 36th annual Falmouth Road Race on Aug. 10, Gitkind will be aiming for a much higher number: 750, the amount in dollars he must raise for his race sponsor, the Doug Flutie Jr. Foundation for Autism. More importantly, he will be trying to bring attention to a cause that is as personal to him as it is to the charity's founder, former NFL quarterback Doug Flutie, whose son has the disorder.
For the past several years, Gitkind has helped his friend Evan McNamara, who suffers from Asperger's Syndrome, a form of autism, live with his condition. During the summer, Gitkind gets together with McNamara to cook, play sports, study or just talk.
"We've lived up the street from each other our entire lives," said Gitkind, who is one year younger than McNamara. "We play a lot of basketball, video games - just hanging out, pretty much."
But Gitkind is also helping his friend prepare for a future on his own, assisting McNamara with "ADLs" - Activities of Daily Living, such as cooking.
"It's pretty organized," he said. "I'll come down from 10 to 3. I'll bring baking stuff. Evan will crack the eggs, he'll mix the stuff."
"It's something I can do when I'm living alone," McNamara said. Gitkind also helps him with schoolwork - "It really helped me pass (the MCAS)."
McNamara, who has attended school outside the Westborough district since second grade (he was diagnosed at age 4), will join Gitkind at Westborough High when the two enter their senior year in the fall.
Gitkind began working with McNamara in late 2005, after his older brother, who had also helped McNamara, left for college.
"I wanted to still hang out with Evan, so I took his spot," he said. The two were already friends, he said, and had much in common: "We talk a lot about movies, we both love 'The Simpsons' and 'Family Guy' ... I feel we have a really good connection."
But working more closely with McNamara has given Gitkind a better understanding of his friend's life with Asperger's.
"It kind of has given me a different view of autism," he said. "I feel like a lot of people don't always have a full understanding of it. A lot of people don't know what it's like to live your whole life with a disability."
Asperger's Syndrome primarily affects communication and behavior, but generally with a lower level of severity than other types of autism. Sometimes people may not even recognize the affliction in someone who has it, mistaking it simply for odd behavior.
"It can affect social life, things like that," said McNamara, who nonetheless added that he has run into few people who have misunderstood him.
But the realities of Asperger's can create challenges for families, and Gitkind noted that McNamara's mother, for example, "has a lot of problems with transportation - it can get expensive."
That's where charities like the Flutie Foundation step in - "(They) help with things like that," Gitkind said.
Gitkind got hooked up with the foundation last year, after he had run in the Falmouth Road Race the previous three years with members of his family, but was having a hard time getting an entry number.
"It's really difficult to get one for Falmouth, but organizations help," he said. Gitkind learned that the Flutie Foundation was putting a team together to run, and decided to join.
"I thought, 'This is perfect,' " he said.
"I have so much fun hanging out with Evan, I just felt I should give something back to the entire community of people and families affected by autism."
That year, he raised $1,000 for the foundation, which helps create awareness of autism and raise money for families and research.
This year he'll be running with a similar goal in mind.
"It's a really great cause," he said. "I just hope that we can raise more awareness."
MetroWest Daily News
Posted Jul 26, 2008 @ 10:53 PM
WESTBOROUGH —
As a captain of the Westborough High School boys cross country team, Matt Gitkind is used to running to finish number one.
But in the 36th annual Falmouth Road Race on Aug. 10, Gitkind will be aiming for a much higher number: 750, the amount in dollars he must raise for his race sponsor, the Doug Flutie Jr. Foundation for Autism. More importantly, he will be trying to bring attention to a cause that is as personal to him as it is to the charity's founder, former NFL quarterback Doug Flutie, whose son has the disorder.
For the past several years, Gitkind has helped his friend Evan McNamara, who suffers from Asperger's Syndrome, a form of autism, live with his condition. During the summer, Gitkind gets together with McNamara to cook, play sports, study or just talk.
"We've lived up the street from each other our entire lives," said Gitkind, who is one year younger than McNamara. "We play a lot of basketball, video games - just hanging out, pretty much."
But Gitkind is also helping his friend prepare for a future on his own, assisting McNamara with "ADLs" - Activities of Daily Living, such as cooking.
"It's pretty organized," he said. "I'll come down from 10 to 3. I'll bring baking stuff. Evan will crack the eggs, he'll mix the stuff."
"It's something I can do when I'm living alone," McNamara said. Gitkind also helps him with schoolwork - "It really helped me pass (the MCAS)."
McNamara, who has attended school outside the Westborough district since second grade (he was diagnosed at age 4), will join Gitkind at Westborough High when the two enter their senior year in the fall.
Gitkind began working with McNamara in late 2005, after his older brother, who had also helped McNamara, left for college.
"I wanted to still hang out with Evan, so I took his spot," he said. The two were already friends, he said, and had much in common: "We talk a lot about movies, we both love 'The Simpsons' and 'Family Guy' ... I feel we have a really good connection."
But working more closely with McNamara has given Gitkind a better understanding of his friend's life with Asperger's.
"It kind of has given me a different view of autism," he said. "I feel like a lot of people don't always have a full understanding of it. A lot of people don't know what it's like to live your whole life with a disability."
Asperger's Syndrome primarily affects communication and behavior, but generally with a lower level of severity than other types of autism. Sometimes people may not even recognize the affliction in someone who has it, mistaking it simply for odd behavior.
"It can affect social life, things like that," said McNamara, who nonetheless added that he has run into few people who have misunderstood him.
But the realities of Asperger's can create challenges for families, and Gitkind noted that McNamara's mother, for example, "has a lot of problems with transportation - it can get expensive."
That's where charities like the Flutie Foundation step in - "(They) help with things like that," Gitkind said.
Gitkind got hooked up with the foundation last year, after he had run in the Falmouth Road Race the previous three years with members of his family, but was having a hard time getting an entry number.
"It's really difficult to get one for Falmouth, but organizations help," he said. Gitkind learned that the Flutie Foundation was putting a team together to run, and decided to join.
"I thought, 'This is perfect,' " he said.
"I have so much fun hanging out with Evan, I just felt I should give something back to the entire community of people and families affected by autism."
That year, he raised $1,000 for the foundation, which helps create awareness of autism and raise money for families and research.
This year he'll be running with a similar goal in mind.
"It's a really great cause," he said. "I just hope that we can raise more awareness."
Saturday, July 26, 2008
Autistic computer whiz seeks a mentor
Joseph Gannon, diagnosed with Asperger Syndrome, looks forward to owning a business.
By BARBARA GIASONE
The Orange County Register
FULLERTON — Job landed, job lost, job landed …
Joseph Gannon's employment record looks like a stock market graph in a see-saw economy.
In the past 10 years, Gannon has been hired and laid off from more than 10 workplaces.
"My bosses don't respect my side of the story when something goes wrong," said Gannon, 35, seated in his Fullerton home. "They just write me up and then ask what happened. They should take me off to the side and discuss the problem."
It's not that Gannon isn't good at what he does, his mother, Daralyn, explained. He just has problems socializing. He knows he's doing his job, and expects everyone else to do the same.
That's one of the perils of Asperger Syndrome, an offshoot of autism that causes a patient to struggle with social skills and restrictive and repetitive behavior.
Lisa Murillo, the director of employment services for the Easter Seals Society, has been working with Gannon for two years, trying to find a job that will suit his skills.
"But it keeps coming back to computers," she said. "Joseph likes to work independently and make decisions by himself."
For that reason, the Troy High School graduate hopes to find a mentor who will work with him on developing his own home-based, computer-building business for private customers.
Paula Pompa-Craven, the regional vice president of the Easter Seals of Southern California, said Gannon would be well-suited for what Easter Seals calls "micro-enterprise."
"He's going along that path, but we just need to find someone to help," said Pompa-Craven, who noted the Regional Center of Orange County in 2007 provided services to 2,700 people diagnosed with autism.
Yet, unlike many of those who have been treated for the disease since childhood, Gannon wasn't diagnosed until he was 27 years old.
"Autism wasn't part of the English language when Joseph was growing up," Daralyn said. "He had a speech impairment, auditory discrimination and he could read, but didn't understand the meaning of words."
Gannon's parents took him to behavior modification classes at the Child Guidance Center in Fullerton, but Gannon didn't adjust to the program.
In the second grade, he couldn't handle the structure and confusion.
He was enrolled in the UCI live-in program that Daralyn said, "was a disaster."
"Joseph was tormented emotionally," she said. "When he went back to Commonwealth School, teacher Katie Reitzel took an interest. But classmates chose Joseph last on the team."
Gannon's father, Gerald, who is a math instructor at Cal State Fullerton, tried to help find a campus job for his son.
But that didn't work out.
The bewildered student attended Fullerton College, Orange Coast College Culinary Arts and worked in fast-food industry.
"Food services were frustrating because of the number of people who come in – and all the noise," Gannon recalled.
And even though he dislikes confusion, his favorite hobby is going to Disneyland.
Finally, at age 27, Gannon met his mother's friend who works with autistic students in the Placentia-Yorba Linda School District. She maintained it was autism, and recommended Gannon be tested.
The friend was right.
Several agencies stepped into the picture and provided some help. Eventually, it was the Easter Seals Autism Services that took a strong interest in Gannon's case.
He works several days a week at a small department store in Placentia. Easter Seals provides a job coach who works right alongside Gannon every minute of the work day.
The rest of the week, the skilled computer expert retreats to his home office where he enjoys computer programming, watching DVDs and listening to music.
"I just need somebody to help me get started in my own business," Gannon said. "I know I could handle everything."
And it would be in a quiet, non-threatening environment.
By BARBARA GIASONE
The Orange County Register
FULLERTON — Job landed, job lost, job landed …
Joseph Gannon's employment record looks like a stock market graph in a see-saw economy.
In the past 10 years, Gannon has been hired and laid off from more than 10 workplaces.
"My bosses don't respect my side of the story when something goes wrong," said Gannon, 35, seated in his Fullerton home. "They just write me up and then ask what happened. They should take me off to the side and discuss the problem."
It's not that Gannon isn't good at what he does, his mother, Daralyn, explained. He just has problems socializing. He knows he's doing his job, and expects everyone else to do the same.
That's one of the perils of Asperger Syndrome, an offshoot of autism that causes a patient to struggle with social skills and restrictive and repetitive behavior.
Lisa Murillo, the director of employment services for the Easter Seals Society, has been working with Gannon for two years, trying to find a job that will suit his skills.
"But it keeps coming back to computers," she said. "Joseph likes to work independently and make decisions by himself."
For that reason, the Troy High School graduate hopes to find a mentor who will work with him on developing his own home-based, computer-building business for private customers.
Paula Pompa-Craven, the regional vice president of the Easter Seals of Southern California, said Gannon would be well-suited for what Easter Seals calls "micro-enterprise."
"He's going along that path, but we just need to find someone to help," said Pompa-Craven, who noted the Regional Center of Orange County in 2007 provided services to 2,700 people diagnosed with autism.
Yet, unlike many of those who have been treated for the disease since childhood, Gannon wasn't diagnosed until he was 27 years old.
"Autism wasn't part of the English language when Joseph was growing up," Daralyn said. "He had a speech impairment, auditory discrimination and he could read, but didn't understand the meaning of words."
Gannon's parents took him to behavior modification classes at the Child Guidance Center in Fullerton, but Gannon didn't adjust to the program.
In the second grade, he couldn't handle the structure and confusion.
He was enrolled in the UCI live-in program that Daralyn said, "was a disaster."
"Joseph was tormented emotionally," she said. "When he went back to Commonwealth School, teacher Katie Reitzel took an interest. But classmates chose Joseph last on the team."
Gannon's father, Gerald, who is a math instructor at Cal State Fullerton, tried to help find a campus job for his son.
But that didn't work out.
The bewildered student attended Fullerton College, Orange Coast College Culinary Arts and worked in fast-food industry.
"Food services were frustrating because of the number of people who come in – and all the noise," Gannon recalled.
And even though he dislikes confusion, his favorite hobby is going to Disneyland.
Finally, at age 27, Gannon met his mother's friend who works with autistic students in the Placentia-Yorba Linda School District. She maintained it was autism, and recommended Gannon be tested.
The friend was right.
Several agencies stepped into the picture and provided some help. Eventually, it was the Easter Seals Autism Services that took a strong interest in Gannon's case.
He works several days a week at a small department store in Placentia. Easter Seals provides a job coach who works right alongside Gannon every minute of the work day.
The rest of the week, the skilled computer expert retreats to his home office where he enjoys computer programming, watching DVDs and listening to music.
"I just need somebody to help me get started in my own business," Gannon said. "I know I could handle everything."
And it would be in a quiet, non-threatening environment.
Autistic adult is an entrepreneur
Matthew Morreale, thought to be 1st local example of statewide trend, operates 1-man shredding business.
By SAM MILLER
The Orange County Register
Matthew Morreale's goals are simple. He wants to go to Disney theme parks in Paris, in Tokyo, in Orlando – so he works.
His mom hopes for more. She dreams of independence for her autistic son. She imagines that he someday will live in his own apartment, earning enough money to pay for it himself. She wouldn't worry so much about dying someday if she knew Matthew could do all that.
As the autism boom ages its way through the education system, thousands of Orange County children with autism will soon enter adulthood. Matthew Morreale, 24, could help answer a question that vexes advocates, politicians and parents of autistic children: Can we help these adults be more than a tax burden?
Matthew is thought to be the first local example of a statewide trend. He runs a microenterprise, a small niche business that can be launched with minimal funding yet make a steady profit.
There are adults with developmental disabilities running mall kiosks and selling hand-made bags. They own floral businesses and they stage puppet shows for children's parties.
Matthew runs the Matthew James Co., a shredding business that began this year with a single client but is already looking to hire additional employees. His brochure promises that he'll "shred the competition."
"Self-sufficiency and independence means not only lessening the impact on the budget, so they don't have to rely on social supports," said Dorsey Griffith, a spokeswoman for the state's department of developmental services. "These people are good workers, and they're happier when they're working and they're part of the community."
The growing prevalence of autism in Orange County schools is striking. There are 156 students who are 17 and have autism – a 500 percent increase from just six year ago.
Go down the line a few grades and the numbers grow. There are 334 students who are 11 years old with autism. Among 5-year-olds, the number is 507.
When Matthew was diagnosed at age 5, he was one of only a few in Orange County, and his future looked bleak.
He threw tantrums to the point that his mother, Marthe Morreale, wouldn't take him out in public. He couldn't shower alone until well into his teen years.
"You just go down this dark road of, oh my gosh, there's no future for this boy," Marthe Morreale said. "At that age, you aren't thinking future. It was hard thinking about 10 years' time when you can't get through the next 10 minutes."
With the help of some patient and strong-willed aides, Matthew calmed down during his teenage years. After high school, his job coach, Cassandra Novak, helped him get a retail job at a clothing store.
He enjoyed it, but grew frustrated that he couldn't get more hours. Novak, who is the microenterprise business development manager at Goodwill of Orange County, suggested he start his own business.
His first client was Atria Woodbridge, a senior living center in Irvine. Once a week he takes his shredder – about waist-high, and about 50 pounds – and shreds junk mail, old bills and business documents for residents and staff.
The center always has a cold Coke waiting for him. Residents sometimes come by to talk to him, though Matthew isn't very verbal with strangers. His mom drives him there but is forbidden from his workplace. "He's very independent," she said.
"He's the type of young man I'd like to have volunteer here, because he's a good listener and he takes an interest in the conversations," said Ladd Roberts, executive director of Atria Woodbridge.
In August, he'll expand to serve the Regional Center of Orange County, which has also helped provide startup support for his business. He'll shred thousands of pounds of center documents using Goodwill's industrial-sized shredding machines.
"He's for real, the real deal," said Bill Bowman, chief executive officer of the center, a state-funded organization that provides services and support for people with developmental disabilities. "They meet our very high confidentiality requirements."
His job coach was worried about the noise from the larger shredders. Like many people with autism, Matthew is sensitive to loud and unfamiliar noises, Novak said.
No problem, he told Novak. "When we're making noise, we're making money."
Novak and Matthew are considering hiring other developmentally disabled adults to help. Novak says he could eventually make $3,000 a month.
That income is a big deal to people with developmental disabilities, said Joe Meadours, executive director of People First, an advocacy group run by developmentally disabled adults.
"People are getting sick of getting paid nothing," he said. "How can we make a career earning 50 cents an hour?"
For Matthew, the money means fulfilling his own dreams of taking his family to Disney theme parks around the world. For now, he has to be content with his weekly visits to Disneyland on his days off.
"You know, if you think about it, that's probably as legitimate a goal as you and I have in our lives," Roberts said. "And he may come closer to realizing it before we do."
By SAM MILLER
The Orange County Register
Matthew Morreale's goals are simple. He wants to go to Disney theme parks in Paris, in Tokyo, in Orlando – so he works.
His mom hopes for more. She dreams of independence for her autistic son. She imagines that he someday will live in his own apartment, earning enough money to pay for it himself. She wouldn't worry so much about dying someday if she knew Matthew could do all that.
As the autism boom ages its way through the education system, thousands of Orange County children with autism will soon enter adulthood. Matthew Morreale, 24, could help answer a question that vexes advocates, politicians and parents of autistic children: Can we help these adults be more than a tax burden?
Matthew is thought to be the first local example of a statewide trend. He runs a microenterprise, a small niche business that can be launched with minimal funding yet make a steady profit.
There are adults with developmental disabilities running mall kiosks and selling hand-made bags. They own floral businesses and they stage puppet shows for children's parties.
Matthew runs the Matthew James Co., a shredding business that began this year with a single client but is already looking to hire additional employees. His brochure promises that he'll "shred the competition."
"Self-sufficiency and independence means not only lessening the impact on the budget, so they don't have to rely on social supports," said Dorsey Griffith, a spokeswoman for the state's department of developmental services. "These people are good workers, and they're happier when they're working and they're part of the community."
The growing prevalence of autism in Orange County schools is striking. There are 156 students who are 17 and have autism – a 500 percent increase from just six year ago.
Go down the line a few grades and the numbers grow. There are 334 students who are 11 years old with autism. Among 5-year-olds, the number is 507.
When Matthew was diagnosed at age 5, he was one of only a few in Orange County, and his future looked bleak.
He threw tantrums to the point that his mother, Marthe Morreale, wouldn't take him out in public. He couldn't shower alone until well into his teen years.
"You just go down this dark road of, oh my gosh, there's no future for this boy," Marthe Morreale said. "At that age, you aren't thinking future. It was hard thinking about 10 years' time when you can't get through the next 10 minutes."
With the help of some patient and strong-willed aides, Matthew calmed down during his teenage years. After high school, his job coach, Cassandra Novak, helped him get a retail job at a clothing store.
He enjoyed it, but grew frustrated that he couldn't get more hours. Novak, who is the microenterprise business development manager at Goodwill of Orange County, suggested he start his own business.
His first client was Atria Woodbridge, a senior living center in Irvine. Once a week he takes his shredder – about waist-high, and about 50 pounds – and shreds junk mail, old bills and business documents for residents and staff.
The center always has a cold Coke waiting for him. Residents sometimes come by to talk to him, though Matthew isn't very verbal with strangers. His mom drives him there but is forbidden from his workplace. "He's very independent," she said.
"He's the type of young man I'd like to have volunteer here, because he's a good listener and he takes an interest in the conversations," said Ladd Roberts, executive director of Atria Woodbridge.
In August, he'll expand to serve the Regional Center of Orange County, which has also helped provide startup support for his business. He'll shred thousands of pounds of center documents using Goodwill's industrial-sized shredding machines.
"He's for real, the real deal," said Bill Bowman, chief executive officer of the center, a state-funded organization that provides services and support for people with developmental disabilities. "They meet our very high confidentiality requirements."
His job coach was worried about the noise from the larger shredders. Like many people with autism, Matthew is sensitive to loud and unfamiliar noises, Novak said.
No problem, he told Novak. "When we're making noise, we're making money."
Novak and Matthew are considering hiring other developmentally disabled adults to help. Novak says he could eventually make $3,000 a month.
That income is a big deal to people with developmental disabilities, said Joe Meadours, executive director of People First, an advocacy group run by developmentally disabled adults.
"People are getting sick of getting paid nothing," he said. "How can we make a career earning 50 cents an hour?"
For Matthew, the money means fulfilling his own dreams of taking his family to Disney theme parks around the world. For now, he has to be content with his weekly visits to Disneyland on his days off.
"You know, if you think about it, that's probably as legitimate a goal as you and I have in our lives," Roberts said. "And he may come closer to realizing it before we do."
Friday, June 6, 2008
My special brother by Alison Kennedy
Matthew spent his first years cocooned in his own little world. He had been a very happy and forward baby, but at six months, following his whooping cough (three in one) vaccination, he had a convulsion. More convulsions followed, and it soon became obvious that these had been only the beginning of what were to be further problems. When autism was finally diagnosed, my parents were told it was unlikely that Matthew would ever be able to communicate properly or form relationships with people; co-ordination would always be a problem and it was unlikely he would be able to hold down a job. It was probable he would be locked in his own world for the rest of his life.
Communicating with him was a big problem for him and for us, and, after many years of frustration on both sides, the barriers were broken down due to his exceptional gifts in art and music. Through these languages we came to understand and communicate with him, and he with us. We found Matthew.
In the early days his drawings had been the invitation into his little world, an invitation his psychiatrist accepted. In nearly every drawing there was a little boy with a mass of curly hair, and through these sketches it became possible to talk to the boy within. There were also his obsessions. We always reassured these insecurities and phobias by our acknowledging them - even if it meant visiting every toilet in every house or building so that Matthew could flush the chain before feeling relaxed in the unfamiliar surroundings. And then, when he was 14, there was an obsession for John Denver's music.
It was this obsession that led to his most valuable gift of communication being unleashed. I started to teach him the guitar, a task that at the time seemed impossible due to his lack of co-ordination and academic ability, but in time he began excel. He has perfect pitch and we discovered that he could imitate any chord or sound he heard. With John Denver's recordings to guide him he soon knew more chord formations than I knew existed.
Today, Matthew communicates best through his music. It is when people see him entertain that they see the Matthew our family know and love. He sings, plays the guitar and writes songs, and it is in this way that HCPT (Handicapped Children's Pilgrimage Trust) asked him to help. He has been going to Lourdes with them as a helper for the past 16 years providing the music at mass and entertaining pilgrims during the evenings. The cassette 'Through the eyes of them' was the result of this association, with the title song written by Matthew - the words portraying his own personal experience of handicap.
After attending the local Catholic primary school, he had gone to a special school for children with learning difficulties. Unfortunately, at the age of 16, he had to leave the school as there was no provision for him to continue his education through the education system; although he did manage to obtain a place on a gardening course. Since completing the course, he has been employed by the local council as a gardener/caretaker/waiter at one of their conference centres and several years ago returned to education through the Adult Literacy Programme run by the local community college. He works hard at his lessons and homework and each year sits the exams with much-deserved success. It is his own determination to self-educate that keeps him going. We see with it a continued growth in confidence (along with a wall full of framed certificates).
Matthew, now 40, lives at home with mum (dad died 13 years ago). He has proved, when she has been on holiday, or away visiting my sister in America, that he can cope with the home and with looking after himself. In lots of ways he is more independent and capable than many young men (and husbands!) of his age. He still has a few of the mannerisms and insecurities characteristic of autism, but he is in control of these and they are only recognisable to those of us who know him well. He is thoughtful, affectionate and caring and a lovely uncle to his nieces and nephews.
The original advice and prognosis my parents were given was hopeless: they were even advised to send him away to a special unit in Scotland that cared for "children like him", and "forget him". My sisters and I are so glad they didn't take the advice. It has definitely not been easy, yet Matthew has received all the care he needed to survive from his immediate family and his extended family at church. There have been many wonderful people in his life, family and friends within our parish who gave support to Matthew and to my parents at what have been sometimes very desperate times. The support has been both in prayer and in practical help, and we shall always be grateful.
In acknowledgment of this support I always want to share Matthew's story with others, as an encouragement to their particular handicap. Indeed, there are so many memories and stories to share that "I could write a book", as the saying goes. But there will be no need, because Matthew has already started writing his autobiography. The opening chapters make enlightening reading and, with his determination to complete what he starts, I know that one day it will not be my words but Matthew's that inspire others.
As a family, we would all agree that it is impossible to claim any one particular activity, person or occasion unlocked the door to Matthew's world, as there has been so many from which to choose. In the many dedicated years of love and prayers, little steps were taken and little successes achieved. Yet these years have also seen countless rewards, and Matthew is someone whom we feel privileged to have been given. Through learning to understand and help him we have discovered so much about ourselves and what is important in our lives. For me the importance of communication has become my focus, and helping people to communicate faith through their gifts and talents has become my vocation and my work.
I shall always be grateful to Matthew for all he has taught me. He is a very special brother.
By Alison Kennedy
alison@watermeadapostolate.co.uk
Communicating with him was a big problem for him and for us, and, after many years of frustration on both sides, the barriers were broken down due to his exceptional gifts in art and music. Through these languages we came to understand and communicate with him, and he with us. We found Matthew.
In the early days his drawings had been the invitation into his little world, an invitation his psychiatrist accepted. In nearly every drawing there was a little boy with a mass of curly hair, and through these sketches it became possible to talk to the boy within. There were also his obsessions. We always reassured these insecurities and phobias by our acknowledging them - even if it meant visiting every toilet in every house or building so that Matthew could flush the chain before feeling relaxed in the unfamiliar surroundings. And then, when he was 14, there was an obsession for John Denver's music.
It was this obsession that led to his most valuable gift of communication being unleashed. I started to teach him the guitar, a task that at the time seemed impossible due to his lack of co-ordination and academic ability, but in time he began excel. He has perfect pitch and we discovered that he could imitate any chord or sound he heard. With John Denver's recordings to guide him he soon knew more chord formations than I knew existed.
Today, Matthew communicates best through his music. It is when people see him entertain that they see the Matthew our family know and love. He sings, plays the guitar and writes songs, and it is in this way that HCPT (Handicapped Children's Pilgrimage Trust) asked him to help. He has been going to Lourdes with them as a helper for the past 16 years providing the music at mass and entertaining pilgrims during the evenings. The cassette 'Through the eyes of them' was the result of this association, with the title song written by Matthew - the words portraying his own personal experience of handicap.
After attending the local Catholic primary school, he had gone to a special school for children with learning difficulties. Unfortunately, at the age of 16, he had to leave the school as there was no provision for him to continue his education through the education system; although he did manage to obtain a place on a gardening course. Since completing the course, he has been employed by the local council as a gardener/caretaker/waiter at one of their conference centres and several years ago returned to education through the Adult Literacy Programme run by the local community college. He works hard at his lessons and homework and each year sits the exams with much-deserved success. It is his own determination to self-educate that keeps him going. We see with it a continued growth in confidence (along with a wall full of framed certificates).
Matthew, now 40, lives at home with mum (dad died 13 years ago). He has proved, when she has been on holiday, or away visiting my sister in America, that he can cope with the home and with looking after himself. In lots of ways he is more independent and capable than many young men (and husbands!) of his age. He still has a few of the mannerisms and insecurities characteristic of autism, but he is in control of these and they are only recognisable to those of us who know him well. He is thoughtful, affectionate and caring and a lovely uncle to his nieces and nephews.
The original advice and prognosis my parents were given was hopeless: they were even advised to send him away to a special unit in Scotland that cared for "children like him", and "forget him". My sisters and I are so glad they didn't take the advice. It has definitely not been easy, yet Matthew has received all the care he needed to survive from his immediate family and his extended family at church. There have been many wonderful people in his life, family and friends within our parish who gave support to Matthew and to my parents at what have been sometimes very desperate times. The support has been both in prayer and in practical help, and we shall always be grateful.
In acknowledgment of this support I always want to share Matthew's story with others, as an encouragement to their particular handicap. Indeed, there are so many memories and stories to share that "I could write a book", as the saying goes. But there will be no need, because Matthew has already started writing his autobiography. The opening chapters make enlightening reading and, with his determination to complete what he starts, I know that one day it will not be my words but Matthew's that inspire others.
As a family, we would all agree that it is impossible to claim any one particular activity, person or occasion unlocked the door to Matthew's world, as there has been so many from which to choose. In the many dedicated years of love and prayers, little steps were taken and little successes achieved. Yet these years have also seen countless rewards, and Matthew is someone whom we feel privileged to have been given. Through learning to understand and help him we have discovered so much about ourselves and what is important in our lives. For me the importance of communication has become my focus, and helping people to communicate faith through their gifts and talents has become my vocation and my work.
I shall always be grateful to Matthew for all he has taught me. He is a very special brother.
By Alison Kennedy
alison@watermeadapostolate.co.uk
My life as a ten-year-old with Asperger syndrome
Hi, my name is Charlotte Gilgallon. I am ten years old, and I have Asperger syndrome.
Throughout my life, before knowing I had Asperger's, I always knew something was different about me but I did not know what it was. I was about seven years old when I found out I had Asperger's - but I only remember going into an office and my mum talking to a lady. Afterwards I started to ask questions. My mum answered them but I did not have a clue what she was saying.
My parents found out about my Asperger's when I was six. Now I am older I can understand about it. I am having problems making friends at my school. Sometimes I can be a little hyper in school and I try too hard to make friends. It feels like they already know and are bullying me about it. They make me feel like I'm a fly and they trap me in a bottle making me feel horrible. I sometimes have a few moments when I feel like I wish I never had it. But that cannot be, so that was the part that made me upset.
I have many friends that know about it and I feel that if I told the people I know really well that do not know about it they might treat me different. I am happy to share all my feelings with whoever reads this cuz I know you will understand.
I think that it was a good thing my mum told me about my Asperger syndrome because I would always come home from school and say to my mum, 'I feel different. Other children at school are not what I am like.'
Sometimes people tell my mum 'Should you have ever told your daughter she has Asperger syndrome?' and I say 'Yes, my mum should have told me' because if she hadn't told me, then I wouldn't understand a lot of stuff. I have a very happy life. I live in a nice house, with a garden, have two good sisters and a good mum and dad.
by Charlotte Gilgallon
Throughout my life, before knowing I had Asperger's, I always knew something was different about me but I did not know what it was. I was about seven years old when I found out I had Asperger's - but I only remember going into an office and my mum talking to a lady. Afterwards I started to ask questions. My mum answered them but I did not have a clue what she was saying.
My parents found out about my Asperger's when I was six. Now I am older I can understand about it. I am having problems making friends at my school. Sometimes I can be a little hyper in school and I try too hard to make friends. It feels like they already know and are bullying me about it. They make me feel like I'm a fly and they trap me in a bottle making me feel horrible. I sometimes have a few moments when I feel like I wish I never had it. But that cannot be, so that was the part that made me upset.
I have many friends that know about it and I feel that if I told the people I know really well that do not know about it they might treat me different. I am happy to share all my feelings with whoever reads this cuz I know you will understand.
I think that it was a good thing my mum told me about my Asperger syndrome because I would always come home from school and say to my mum, 'I feel different. Other children at school are not what I am like.'
Sometimes people tell my mum 'Should you have ever told your daughter she has Asperger syndrome?' and I say 'Yes, my mum should have told me' because if she hadn't told me, then I wouldn't understand a lot of stuff. I have a very happy life. I live in a nice house, with a garden, have two good sisters and a good mum and dad.
by Charlotte Gilgallon
Stan's world
The life of an adult with autism How Stan copes with everyday life
Adam Shemper
I want to write about my hectic life, and yet nothing is happening in my life. It's inside a volcano. A hole in a donut like tangled yarn is my life. -- From Stan's journal .
The walk
It is a walk psychologists and neurologists note as characteristic of his autism, his Asperger's syndrome, his obsessive compulsive disorder, or whatever diagnosis they had given him ever since he'd been born blue and unbreathing in 1972 in Kharkov, Ukraine. It is a walk that, in a way, describes Stan Litmanovich's whole life.
He simultaneously moves in two directions. His upper body struts chicken- like, and his arms swing out wide. He rocks into each step, his large belly pitching forward like a watermelon. He drags his right foot, the heel of which was broken at his difficult birth. He carries the foot as if it were the heaviest part of him.
He is a peculiar form plodding down the sidewalk, his mind on the task of getting where he is going and making sense of the world of objects.
"When I walk, I look at the people, and I think they are living in a life, " Stan says. "I think, I could be participating in life. I think lots of things. I think how to cross the street, how not to get hit, how I can get more independent."
Stan, 32, lives in a San Francisco group home. He is one of an estimated 35,000 people in California with an autistic disorder and one of many adults in the Bay Area who struggle for support.
Autism has increased dramatically in the state over the last decade, and although there are now more than 20,000 people receiving state assistance, Stan is not one of them. His brain disorder is complicated and not considered to be severe enough by state doctors to warrant services. He is dependent on city mental health care and his ailing, elderly mother. Mostly, Stan has to navigate his disorder alone.
He can walk only between two known places. He goes only where he is trained to go: from his psychologist's office to his mother's house to the corner store and café. As he rocks into each step, he checks in constantly with the landmarks, the signs he memorized to make his world familiar. But he can't expand the maps others have drawn for him. There are invisible fences everywhere.
Diagnosis
I'm having a hard time writing (redundant) communication. That is bad. What is good? I'm going to a conference on autism. And what may be equally or more good, I have a journalist interviewing me for my life story. The rest is difficult for me. -- From Stan's journal.
From that first moment in a Kharkov hospital when doctors told his mother he was brain damaged, had "mild cerebral palsy" and "scoliosis of the spine," the problem was the diagnosis. As time went on, as the first generalized convulsions hit at six weeks, as the first words and baby steps were delayed for more than a year, as he rarely ate or insisted on drinking water from rain puddles and threw violent tantrums, the problem always came back to the same thing: the lack of a satisfying, definitive diagnosis.
"My diagnosis is even trickier than my history" is Stan's assessment. Like the landmarks on the street, he needs a specific diagnosis to orient himself. He needs it to know where he's starting from and where he's going, but he needs it for practical reasons as well.
Without a clear diagnosis he has little chance of being accepted into San Francisco's Golden Gate Regional Center, one of 21 state-funded care facilities providing programs for people with developmental disabilities such as cerebral palsy, mental retardation and autism. Only state support, he believes, will help solve his problems. "I want to create an army of circumstances," he says, "to arm myself to have a good life."
Since his family doctor told him in 1989 that he might have an autistic disorder, he has taken autism to be the label that best describes his condition, even though the conclusions of other doctors who have treated him defy this categorization.
If only it were simpler to meet the autistic criteria: severe impairment in social interaction, a marked inability to initiate or sustain conversation, compulsive routines or rituals and repetitive motor movements, and preoccupations with parts of objects that gets in the way of grasping the whole. But Stan, hardly easy to describe -- his case complicated by the record of his mental problems like schizophrenia -- has already been denied care twice by the regional center.
On weekends, when Stan visits his mother, he often pulls the scrambled documents of his diagnostic history from an accordion-like folder he keeps beneath a coffee table in her apartment in San Francisco's Richmond District. "I like writings, because it kind of organizes what people think of me," he says.
He looks down at scattered papers in front of his crossed legs. In them doctors from all over the world have recorded evidence of microcephaly, convulsive disorder, organic mood disorder, obsessive compulsive disorder, depression, mild retardation, schizophrenia, attention deficit disorder, psychosis (not otherwise specified) and Asperger's syndrome, autistic disorder and pervasive developmental disorder (not otherwise specified).
Stan says: "I guess, if I say I'm autistic, I'm part of a bigger category called pervasive developmental disorder. And I'm part of a small category, maybe learning disabled or a brain disorder or something. I don't know how to categorize it properly." .
Mother
Since I was 12, I've been in the middle between my mother and the professionals. I don't know how to act. And even if they told me how to act one way, I would have a difficult time doing it, due to my disability, due to my lack of comprehension, due to my incorporational difficulty, like a coordinational difficulty, like with the body-mind and my environment. -- From an interview with Stan.
Inga is 72, suffering from a bad thyroid, too old and sick to keep caring for him even though she's never stopped trying. She's carried him around the world her whole life: to Rome in 1978, where Stan obsessively rode elevators, flipped light switches and banged the walls of apartment buildings long and hard enough to always get them kicked out; to Philadelphia for a year; to San Francisco, where still there was no success in finding Stan the proper care, the good education she imagined for him; only Stan moving through a maze of crisis centers, hospitals, half-way houses and group homes.
Then they went to India, where they lived for three years in the ashrams of a popular guru named Sai Baba, until she figured things with Stan were worse (or at least no better) and followed the advice of a close devotee and tried Sweden, which had a well-known clinic for the developmentally disabled, but they were unable to obtain citizenship papers and were forced to return to Philadelphia and another school that specialized in teaching children with autism. (Stan said of this, "I was supposed to stay there three weeks for some kind of trial, then they kicked me out, because I had holey underwear, underwear with holes. I did not change clothes").
Having traveled the globe, they found themselves back in San Francisco, just the two of them again.
He had no friends, had never had a date or a partner. After school, in the afternoons, the only place to go was his mother's small studio, where he paced or sat rocking in the bed, talking to her about chess, computers and mathematical concepts like infinity. She still prepared dinners for him, or they went out for fried chicken and pizza, the fast food he most trusted, or she took him to the bookstore -- all those books to skim before his mind drifted and lost the assembly of variegated information. And she took him grocery shopping, Stan always walking in that odd way, like a lilting pigeon, far out in front of her. .
The house
Due to culture reasons, and my own reasons that I'm disabled, I think I have a right to stay with my mother. -- From an interview with Stan.
Four years earlier, he had moved out of his mother's apartment for the last time, to walk a different path. He lives now in a boarding house on McAllister Street, which costs him more than $800 a month (even with a city subsidy), among 14 other men and women with varying degrees of mental retardation and various kinds of neurological problems, some undoubtedly no less indeterminately diagnosed.
He spent many nights frozen and crying in his bed. Often, his nights were sleepless. "I'm having noises in my head," was the way he put it. There is the loud clicking and clanking of the radiator, the incessant murmur of the downstairs television, his roommate's always-on radio and the tweaking smoke alarm. Loud noises had always disturbed and frightened him.
"There's a lot of these inserted issues," Stan says.
If he cannot live with his mother, then he hopes for someplace where there are no bars on the window or a locked iron gate for a front door, a place that doesn't make him feel like a prisoner in a foreign country. He has many fears:
"If my mother dies, I might end up homeless. I might end up in jail. I might lose my temper. I'm not really a bad person. It's just I can't rely on my mother. I can't rely on the social worker. I can't rely on the system. Some people say turn to God, but that's just too abstract for me. You don't pray to God to go the bathroom." .
Psychotherapist
I want to learn about schemas, and theories about assimilation, accommodation, equilibrium. I kind of read it from a psychology book. And I feel that's very much me.
-- From an interview with Stan.
He follows his psychotherapist, Natasha Kasanov, down the hallway toward her office, his arms flailing, his head bowed.
"My work with Stan is on the level of helping him be more independent," his therapist says. In the past, she says, she treated his mother, Inga, for depression. She has known Stan a long time. "I think he can be trained to live in an independent situation," she says. "But Inga is extremely fearful whenever this topic comes up. She often wonders what will happen to Stan when she dies."
Stan sits near the window, light leaking through the half-closed blinds. On a table in the far corner is a stone water fountain with no water flowing.
"I want to say two things about becoming independent of my mother," Stan says to his therapist. "One is letting go, and one is knowing where to step. Like you don't go into a dark forest in a war, if you're a soldier, without being trained as a soldier. If I haven't been trained to shoot, then I don't know how to take care of myself in the forest when I'm being attacked. I sometimes feel like my mother could've trained me better when I was younger. She could've trained me like a mild soldier, so that I could reach an equilibrium."
He comes to Kasanov's office in San Francisco twice a month, to talk like anyone talks to a therapist, although it's more difficult for him to express himself in those 50 minutes. How could he ever say all the things that are wrong with his life? To describe that life and what's missing from it is almost impossible. It would, as Stan says, take to infinity. .
Laundry day
I want to write about organizing my things and experiences. The first thing is my clothes. The second is my papers and books. The third thing is my food. The fourth thing is communicating ideas and thoughts to people. I get disorganized and nervous.
-- From Stan's journal.
He always wore the same sweat suit. Most days he refused to shower. He often smelled like sulfur and wet mulch. He had never learned to do his laundry until the staff at the Recreational Center for the Handicapped, where he spends his days, taught him last year.
"I have a survival instinct," Stan says. "But not that I could survive if I was dropped off in the middle of nowhere. Like I dropped you off in the middle of China, that's what it would be like for me in the middle of San Francisco without any help."
One Friday, his duffel bag dragging the floor, he opens the laundry room door and finds the washing machine closed, but not on, and the dryer cycling with someone else's clothes. He pauses for a moment. "I guess I can't do my laundry," he says, without opening the washer.
An hour later, when he returns, the laundry closet is hot and steamy. He studies the two machines, as if he hasn't seen them before. He flips up the washing-machine lid and hovers over it, inspecting. There is nothing inside. "I think someone is trying to trick me," he says.
He opens the warm dryer and peers inside as if into a great problem. A kinked heap of clothes needs to be extracted. After a minute he bends down, and gathers the bundle to his body, then clumsily piles it on top of the dryer. He shuffles over to the washer, stares down again and begins counting his clothes one-by-one before stuffing them inside. .
Phone
It sounds good to a normal person, that I should get independence from my mother, because eventually you have to move out and be on your own, because eventually your mother will die. And it's kind of like my mother is autistic, but culturally autistic. I don't know how to explain it. I feel like my mother doesn't know about the modern life, and all the system. And I don't know it either, because I'm in the shell of my mother. Kind of like, I don't know how to explain it, in the cave of my mother.
-- From an interview with Stan.
He waits in the dark to use the pay phone to call his mother, the way he does every night when he arrives here in his neighborhood. He stands in front of the convenience store on the corner of McAllister, leaning on one foot, then the other, as if it were too painful to stand still.
A man, smoking a cigarette, talks on one of the two pay phones near the store window. Though the other is free, Stan keeps his distance, rocking on his heels, his soft sweat suit pocket jingling with quarters. He stares blankly into the dark street.
As soon as the man leaves, Stan steps into the blue light radiating from the store's neon beer signs. He picks up the receiver the man didn't use, bends down and considers the configuration of buttons. His task, as always, is to remember the sequence of his mother's phone number.
"Yeah, yeah, I made it," he says. "I'm here." He pauses, his head bowed, listening to her. That voice, for better or worse, his only reliable compass.
"Good night," he finally whispers. "And I bless you."
He hangs up, checks the receiver in the cradle, before he ambles down the street and underneath the matrix of scaffolding built over the door to that house that never felt like home.
Adam Shemper
I want to write about my hectic life, and yet nothing is happening in my life. It's inside a volcano. A hole in a donut like tangled yarn is my life. -- From Stan's journal .
The walk
It is a walk psychologists and neurologists note as characteristic of his autism, his Asperger's syndrome, his obsessive compulsive disorder, or whatever diagnosis they had given him ever since he'd been born blue and unbreathing in 1972 in Kharkov, Ukraine. It is a walk that, in a way, describes Stan Litmanovich's whole life.
He simultaneously moves in two directions. His upper body struts chicken- like, and his arms swing out wide. He rocks into each step, his large belly pitching forward like a watermelon. He drags his right foot, the heel of which was broken at his difficult birth. He carries the foot as if it were the heaviest part of him.
He is a peculiar form plodding down the sidewalk, his mind on the task of getting where he is going and making sense of the world of objects.
"When I walk, I look at the people, and I think they are living in a life, " Stan says. "I think, I could be participating in life. I think lots of things. I think how to cross the street, how not to get hit, how I can get more independent."
Stan, 32, lives in a San Francisco group home. He is one of an estimated 35,000 people in California with an autistic disorder and one of many adults in the Bay Area who struggle for support.
Autism has increased dramatically in the state over the last decade, and although there are now more than 20,000 people receiving state assistance, Stan is not one of them. His brain disorder is complicated and not considered to be severe enough by state doctors to warrant services. He is dependent on city mental health care and his ailing, elderly mother. Mostly, Stan has to navigate his disorder alone.
He can walk only between two known places. He goes only where he is trained to go: from his psychologist's office to his mother's house to the corner store and café. As he rocks into each step, he checks in constantly with the landmarks, the signs he memorized to make his world familiar. But he can't expand the maps others have drawn for him. There are invisible fences everywhere.
Diagnosis
I'm having a hard time writing (redundant) communication. That is bad. What is good? I'm going to a conference on autism. And what may be equally or more good, I have a journalist interviewing me for my life story. The rest is difficult for me. -- From Stan's journal.
From that first moment in a Kharkov hospital when doctors told his mother he was brain damaged, had "mild cerebral palsy" and "scoliosis of the spine," the problem was the diagnosis. As time went on, as the first generalized convulsions hit at six weeks, as the first words and baby steps were delayed for more than a year, as he rarely ate or insisted on drinking water from rain puddles and threw violent tantrums, the problem always came back to the same thing: the lack of a satisfying, definitive diagnosis.
"My diagnosis is even trickier than my history" is Stan's assessment. Like the landmarks on the street, he needs a specific diagnosis to orient himself. He needs it to know where he's starting from and where he's going, but he needs it for practical reasons as well.
Without a clear diagnosis he has little chance of being accepted into San Francisco's Golden Gate Regional Center, one of 21 state-funded care facilities providing programs for people with developmental disabilities such as cerebral palsy, mental retardation and autism. Only state support, he believes, will help solve his problems. "I want to create an army of circumstances," he says, "to arm myself to have a good life."
Since his family doctor told him in 1989 that he might have an autistic disorder, he has taken autism to be the label that best describes his condition, even though the conclusions of other doctors who have treated him defy this categorization.
If only it were simpler to meet the autistic criteria: severe impairment in social interaction, a marked inability to initiate or sustain conversation, compulsive routines or rituals and repetitive motor movements, and preoccupations with parts of objects that gets in the way of grasping the whole. But Stan, hardly easy to describe -- his case complicated by the record of his mental problems like schizophrenia -- has already been denied care twice by the regional center.
On weekends, when Stan visits his mother, he often pulls the scrambled documents of his diagnostic history from an accordion-like folder he keeps beneath a coffee table in her apartment in San Francisco's Richmond District. "I like writings, because it kind of organizes what people think of me," he says.
He looks down at scattered papers in front of his crossed legs. In them doctors from all over the world have recorded evidence of microcephaly, convulsive disorder, organic mood disorder, obsessive compulsive disorder, depression, mild retardation, schizophrenia, attention deficit disorder, psychosis (not otherwise specified) and Asperger's syndrome, autistic disorder and pervasive developmental disorder (not otherwise specified).
Stan says: "I guess, if I say I'm autistic, I'm part of a bigger category called pervasive developmental disorder. And I'm part of a small category, maybe learning disabled or a brain disorder or something. I don't know how to categorize it properly." .
Mother
Since I was 12, I've been in the middle between my mother and the professionals. I don't know how to act. And even if they told me how to act one way, I would have a difficult time doing it, due to my disability, due to my lack of comprehension, due to my incorporational difficulty, like a coordinational difficulty, like with the body-mind and my environment. -- From an interview with Stan.
Inga is 72, suffering from a bad thyroid, too old and sick to keep caring for him even though she's never stopped trying. She's carried him around the world her whole life: to Rome in 1978, where Stan obsessively rode elevators, flipped light switches and banged the walls of apartment buildings long and hard enough to always get them kicked out; to Philadelphia for a year; to San Francisco, where still there was no success in finding Stan the proper care, the good education she imagined for him; only Stan moving through a maze of crisis centers, hospitals, half-way houses and group homes.
Then they went to India, where they lived for three years in the ashrams of a popular guru named Sai Baba, until she figured things with Stan were worse (or at least no better) and followed the advice of a close devotee and tried Sweden, which had a well-known clinic for the developmentally disabled, but they were unable to obtain citizenship papers and were forced to return to Philadelphia and another school that specialized in teaching children with autism. (Stan said of this, "I was supposed to stay there three weeks for some kind of trial, then they kicked me out, because I had holey underwear, underwear with holes. I did not change clothes").
Having traveled the globe, they found themselves back in San Francisco, just the two of them again.
He had no friends, had never had a date or a partner. After school, in the afternoons, the only place to go was his mother's small studio, where he paced or sat rocking in the bed, talking to her about chess, computers and mathematical concepts like infinity. She still prepared dinners for him, or they went out for fried chicken and pizza, the fast food he most trusted, or she took him to the bookstore -- all those books to skim before his mind drifted and lost the assembly of variegated information. And she took him grocery shopping, Stan always walking in that odd way, like a lilting pigeon, far out in front of her. .
The house
Due to culture reasons, and my own reasons that I'm disabled, I think I have a right to stay with my mother. -- From an interview with Stan.
Four years earlier, he had moved out of his mother's apartment for the last time, to walk a different path. He lives now in a boarding house on McAllister Street, which costs him more than $800 a month (even with a city subsidy), among 14 other men and women with varying degrees of mental retardation and various kinds of neurological problems, some undoubtedly no less indeterminately diagnosed.
He spent many nights frozen and crying in his bed. Often, his nights were sleepless. "I'm having noises in my head," was the way he put it. There is the loud clicking and clanking of the radiator, the incessant murmur of the downstairs television, his roommate's always-on radio and the tweaking smoke alarm. Loud noises had always disturbed and frightened him.
"There's a lot of these inserted issues," Stan says.
If he cannot live with his mother, then he hopes for someplace where there are no bars on the window or a locked iron gate for a front door, a place that doesn't make him feel like a prisoner in a foreign country. He has many fears:
"If my mother dies, I might end up homeless. I might end up in jail. I might lose my temper. I'm not really a bad person. It's just I can't rely on my mother. I can't rely on the social worker. I can't rely on the system. Some people say turn to God, but that's just too abstract for me. You don't pray to God to go the bathroom." .
Psychotherapist
I want to learn about schemas, and theories about assimilation, accommodation, equilibrium. I kind of read it from a psychology book. And I feel that's very much me.
-- From an interview with Stan.
He follows his psychotherapist, Natasha Kasanov, down the hallway toward her office, his arms flailing, his head bowed.
"My work with Stan is on the level of helping him be more independent," his therapist says. In the past, she says, she treated his mother, Inga, for depression. She has known Stan a long time. "I think he can be trained to live in an independent situation," she says. "But Inga is extremely fearful whenever this topic comes up. She often wonders what will happen to Stan when she dies."
Stan sits near the window, light leaking through the half-closed blinds. On a table in the far corner is a stone water fountain with no water flowing.
"I want to say two things about becoming independent of my mother," Stan says to his therapist. "One is letting go, and one is knowing where to step. Like you don't go into a dark forest in a war, if you're a soldier, without being trained as a soldier. If I haven't been trained to shoot, then I don't know how to take care of myself in the forest when I'm being attacked. I sometimes feel like my mother could've trained me better when I was younger. She could've trained me like a mild soldier, so that I could reach an equilibrium."
He comes to Kasanov's office in San Francisco twice a month, to talk like anyone talks to a therapist, although it's more difficult for him to express himself in those 50 minutes. How could he ever say all the things that are wrong with his life? To describe that life and what's missing from it is almost impossible. It would, as Stan says, take to infinity. .
Laundry day
I want to write about organizing my things and experiences. The first thing is my clothes. The second is my papers and books. The third thing is my food. The fourth thing is communicating ideas and thoughts to people. I get disorganized and nervous.
-- From Stan's journal.
He always wore the same sweat suit. Most days he refused to shower. He often smelled like sulfur and wet mulch. He had never learned to do his laundry until the staff at the Recreational Center for the Handicapped, where he spends his days, taught him last year.
"I have a survival instinct," Stan says. "But not that I could survive if I was dropped off in the middle of nowhere. Like I dropped you off in the middle of China, that's what it would be like for me in the middle of San Francisco without any help."
One Friday, his duffel bag dragging the floor, he opens the laundry room door and finds the washing machine closed, but not on, and the dryer cycling with someone else's clothes. He pauses for a moment. "I guess I can't do my laundry," he says, without opening the washer.
An hour later, when he returns, the laundry closet is hot and steamy. He studies the two machines, as if he hasn't seen them before. He flips up the washing-machine lid and hovers over it, inspecting. There is nothing inside. "I think someone is trying to trick me," he says.
He opens the warm dryer and peers inside as if into a great problem. A kinked heap of clothes needs to be extracted. After a minute he bends down, and gathers the bundle to his body, then clumsily piles it on top of the dryer. He shuffles over to the washer, stares down again and begins counting his clothes one-by-one before stuffing them inside. .
Phone
It sounds good to a normal person, that I should get independence from my mother, because eventually you have to move out and be on your own, because eventually your mother will die. And it's kind of like my mother is autistic, but culturally autistic. I don't know how to explain it. I feel like my mother doesn't know about the modern life, and all the system. And I don't know it either, because I'm in the shell of my mother. Kind of like, I don't know how to explain it, in the cave of my mother.
-- From an interview with Stan.
He waits in the dark to use the pay phone to call his mother, the way he does every night when he arrives here in his neighborhood. He stands in front of the convenience store on the corner of McAllister, leaning on one foot, then the other, as if it were too painful to stand still.
A man, smoking a cigarette, talks on one of the two pay phones near the store window. Though the other is free, Stan keeps his distance, rocking on his heels, his soft sweat suit pocket jingling with quarters. He stares blankly into the dark street.
As soon as the man leaves, Stan steps into the blue light radiating from the store's neon beer signs. He picks up the receiver the man didn't use, bends down and considers the configuration of buttons. His task, as always, is to remember the sequence of his mother's phone number.
"Yeah, yeah, I made it," he says. "I'm here." He pauses, his head bowed, listening to her. That voice, for better or worse, his only reliable compass.
"Good night," he finally whispers. "And I bless you."
He hangs up, checks the receiver in the cradle, before he ambles down the street and underneath the matrix of scaffolding built over the door to that house that never felt like home.
Tuesday, May 27, 2008
Autism doesn't slow student in quest for degree
All the small yet extremely celebrated successes in Chad Winkler's 22 years have led him to his biggest success yet: college graduation.
On May 18, Winkler graduated cum laude from the Missouri University of Science and Technology in Rolla, with a bachelor's degree in ceramic engineering with a minor in history and chemistry.
For the past 18 years he has worked, pushed, struggled and earned each and every one of his successes. From the first time he was able to do a forward roll, to the first time he spoke in front of a crowd of people to now graduating college with honors, Winkler always strived for success.
His battles started at age 4 when he was diagnosed as being autistic.
Then, when he was in fourth grade, he was diagnosed as having Asperger's Syndrome (AS), which is just one part of the spectrum of autism, sometimes referred to as ASD. It is characterized by difficulties in verbal and nonverbal communication.
"Now I'm ready to spread my wings and fly," Winkler said.
And that he will do.
In a few weeks, he will drive his new car and his new puppy to his new apartment in Salem, Ill., where he starts his new job.
"He's an amazing young man," said his mother, Becky Winkler. "He has had to overcome so much in his life and he's successful. I always knew he would be."
Winkler's success in life and college doesn't come as a surprise to his mother. Although she felt a level of personal guilt when he was diagnosed with AS, she knew he was still a child with potential and she never let him forget it.
"Even though others told us he would be nothing more than employable' in a sheltered workshop, we pushed him to do his best," she said. "He did it, and look at him now. It's just amazing to see the man he has grown to be."
Becky said there were times when she made him do things he really didn't want to do.
"We've always tried to treat him as a typical child," Becky said. "If he didn't understand something or he couldn't do something, we would back up and try it a different way."
She encouraged his involvement with 4-H, supported his efforts to raise public awareness of autism through public speaking and taught him to always reach for the stars.
Winkler is a 2004 graduate of Blair Oaks. Growing up with AS and dealing with the disabilities that come with it was not an easy task. Being made fun of by his peers, combined with having to deal with some adults who didn't believe in him, helped push him to succeed.
"It only made me work harder," he said.
"When they would say things like that, it just made me want to do better. It was hard, but I knew I could do it and I did."
Winkler is modest when he talks about the obstacles and hurdles he has overcome. A shoulder shrug and a smile are indicative of his level of pride.
Although he is proud of his accomplishments thus far, he believes no one should set limitations on themselves.
As he packs to leave his family and says goodbye to Jefferson City to spread his wings one more time, Winkler's advice to others who live with autism is simple.
"You just have to work hard," he said. "Just know what you want to do and work hard to do it. Anyone can do it."
For parents of children living with autism, Becky has one piece of advice.
"Treat them like a typical child," she said. "If they don't understand, back up and try it again. All children have the potential - they just need encouragement and guidance."
On May 18, Winkler graduated cum laude from the Missouri University of Science and Technology in Rolla, with a bachelor's degree in ceramic engineering with a minor in history and chemistry.
For the past 18 years he has worked, pushed, struggled and earned each and every one of his successes. From the first time he was able to do a forward roll, to the first time he spoke in front of a crowd of people to now graduating college with honors, Winkler always strived for success.
His battles started at age 4 when he was diagnosed as being autistic.
Then, when he was in fourth grade, he was diagnosed as having Asperger's Syndrome (AS), which is just one part of the spectrum of autism, sometimes referred to as ASD. It is characterized by difficulties in verbal and nonverbal communication.
"Now I'm ready to spread my wings and fly," Winkler said.
And that he will do.
In a few weeks, he will drive his new car and his new puppy to his new apartment in Salem, Ill., where he starts his new job.
"He's an amazing young man," said his mother, Becky Winkler. "He has had to overcome so much in his life and he's successful. I always knew he would be."
Winkler's success in life and college doesn't come as a surprise to his mother. Although she felt a level of personal guilt when he was diagnosed with AS, she knew he was still a child with potential and she never let him forget it.
"Even though others told us he would be nothing more than employable' in a sheltered workshop, we pushed him to do his best," she said. "He did it, and look at him now. It's just amazing to see the man he has grown to be."
Becky said there were times when she made him do things he really didn't want to do.
"We've always tried to treat him as a typical child," Becky said. "If he didn't understand something or he couldn't do something, we would back up and try it a different way."
She encouraged his involvement with 4-H, supported his efforts to raise public awareness of autism through public speaking and taught him to always reach for the stars.
Winkler is a 2004 graduate of Blair Oaks. Growing up with AS and dealing with the disabilities that come with it was not an easy task. Being made fun of by his peers, combined with having to deal with some adults who didn't believe in him, helped push him to succeed.
"It only made me work harder," he said.
"When they would say things like that, it just made me want to do better. It was hard, but I knew I could do it and I did."
Winkler is modest when he talks about the obstacles and hurdles he has overcome. A shoulder shrug and a smile are indicative of his level of pride.
Although he is proud of his accomplishments thus far, he believes no one should set limitations on themselves.
As he packs to leave his family and says goodbye to Jefferson City to spread his wings one more time, Winkler's advice to others who live with autism is simple.
"You just have to work hard," he said. "Just know what you want to do and work hard to do it. Anyone can do it."
For parents of children living with autism, Becky has one piece of advice.
"Treat them like a typical child," she said. "If they don't understand, back up and try it again. All children have the potential - they just need encouragement and guidance."
Autistic boy creates art with paper and scissors
In Wil Kerner's world, happiness and grief and all the feelings that come between are puzzle pieces as alien as the curious construction-paper characters in the art he assembles on his grandmother's living-room carpet.
What the autistic 12-year-old can't express verbally or in social interaction he can show through his carefully cut out geometric shapes assembled into characters in a paper collage, a talent the staff at Seattle's Harborview Medical Center calls a rare artistic gift. Large red circles become heads, delicate strips of fringed white paper become hair, and finely cut arches are shaped into eyebrows.
The art and the artist intrigues those who study autism. Dr. Stephen Dager, interim director of the University of Washington's Autism Center, who has been studying brain anatomy and chemistry in autism, is mystified by Wil's artistic talents. Autistic people generally pay little attention to eyes during social interaction, studies show, and usually are unaware of others' emotions. Yet, Wil has the ability to mimic human emotion through his art.
Wil doesn't understand numbers, has limited speech ability and very limited social skills. He has a brief attention span, tends to be compulsive and doesn't like his routine interrupted, and while he seems oblivious to others' subtle facial expressions, he manages not only to reproduce them but to do so by cutting them out of paper.
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Those who study autism wonder if Wil'sremarkable gift is a means of compensation for other deficits or a matter of serendipity.
In the past, Wil would have been called a "savant," a term now considered insensitive. Dager calls him extraordinarily talented.
Last week, Wil was honored at a reception in the Harborview cafeteria, where his art is on display through the month. He fidgeted at a table in the corner with a pile of colored paper in front of him, as dozens of people milled through the exhibit, challenging Wil's need for a calm environment.
Guest of honor or not, he finally had enough and shouted. He left for a quiet place as guests continued to admire his work.
The hospital has an art program and features artists year-round. When art director Peggy Weise saw Wil's work, she was intrigued.
"It's full of symbolism. Once you spend time with it, it's actually quite sophisticated. You can appreciate it first on the cursory level, and then you can appreciate its more sophisticated qualities," Weise said.
Wil, who was diagnosed with autism when he was 2, went to special classes in the Issaquah School District until two years ago but failed to thrive and began having panic attacks, said his grandmother, Susan Mooring. He was allowed to be tutored privately at Mooring's home just outside Renton.
With the help of his teacher, Leroy Maxwell, Wil, at 10, slowly began to learn to speak, something he seldom had done, and to read.
Then one day his father took him to a warehouse store and granted his wish for colorful construction paper, letting him buy an entire cartload. Wil's first collages circle-headed people with one eye each, a boy and girl holding hands, a blue baby with a shy smile, began to take shape. Mooring glanced at what he was doing and was stunned.
"There was really something going on there," she said of her grandson's art.
Although she had no formal art training, she believed Wil's creations were more than haphazard assemblages. To capture a design before Wil could destroy it, Mooring photographed each one and collected all the pieces. Later, she reassembled each collage on a large piece of artboard and hired a photographer to take digital photographs. Now hundreds of collages later, they're selling sometimes for as much as $1,000 each in the case of three sold at a charity auction to benefit autism.
One collage, of a pig with a downcast look and raised shoulder, gives a strong sense of isolation and sadness, Mooring said. While Wil names most of his work simply "Blue Baby" and "Pals," for instance Mooring named the pig collage "Exclusion." It was something Wil experienced, she said.
Another one of his creations is a collage of rectangles with a large figure, vaguely resembling Donald Trump, seemingly overlooking buildings. "He calls this one 'Rat,'" Mooring said.
That he can create facial expressions so well is particularly amazing, Dager said, because autistic people tend not to maintain eye contact or study facial expressions.
"Is it that their brains are wired differently? That's part of what we're studying," Dager said.
As for Wil, time for his art is a reward for doing schoolwork, Maxwell said. And when Wil begins to cut, the paper flies, the shapes emerge, the floor is littered with scraps of color and Maxwell and Mooring wait and watch for the magic.
What the autistic 12-year-old can't express verbally or in social interaction he can show through his carefully cut out geometric shapes assembled into characters in a paper collage, a talent the staff at Seattle's Harborview Medical Center calls a rare artistic gift. Large red circles become heads, delicate strips of fringed white paper become hair, and finely cut arches are shaped into eyebrows.
The art and the artist intrigues those who study autism. Dr. Stephen Dager, interim director of the University of Washington's Autism Center, who has been studying brain anatomy and chemistry in autism, is mystified by Wil's artistic talents. Autistic people generally pay little attention to eyes during social interaction, studies show, and usually are unaware of others' emotions. Yet, Wil has the ability to mimic human emotion through his art.
Wil doesn't understand numbers, has limited speech ability and very limited social skills. He has a brief attention span, tends to be compulsive and doesn't like his routine interrupted, and while he seems oblivious to others' subtle facial expressions, he manages not only to reproduce them but to do so by cutting them out of paper.
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Those who study autism wonder if Wil'sremarkable gift is a means of compensation for other deficits or a matter of serendipity.
In the past, Wil would have been called a "savant," a term now considered insensitive. Dager calls him extraordinarily talented.
Last week, Wil was honored at a reception in the Harborview cafeteria, where his art is on display through the month. He fidgeted at a table in the corner with a pile of colored paper in front of him, as dozens of people milled through the exhibit, challenging Wil's need for a calm environment.
Guest of honor or not, he finally had enough and shouted. He left for a quiet place as guests continued to admire his work.
The hospital has an art program and features artists year-round. When art director Peggy Weise saw Wil's work, she was intrigued.
"It's full of symbolism. Once you spend time with it, it's actually quite sophisticated. You can appreciate it first on the cursory level, and then you can appreciate its more sophisticated qualities," Weise said.
Wil, who was diagnosed with autism when he was 2, went to special classes in the Issaquah School District until two years ago but failed to thrive and began having panic attacks, said his grandmother, Susan Mooring. He was allowed to be tutored privately at Mooring's home just outside Renton.
With the help of his teacher, Leroy Maxwell, Wil, at 10, slowly began to learn to speak, something he seldom had done, and to read.
Then one day his father took him to a warehouse store and granted his wish for colorful construction paper, letting him buy an entire cartload. Wil's first collages circle-headed people with one eye each, a boy and girl holding hands, a blue baby with a shy smile, began to take shape. Mooring glanced at what he was doing and was stunned.
"There was really something going on there," she said of her grandson's art.
Although she had no formal art training, she believed Wil's creations were more than haphazard assemblages. To capture a design before Wil could destroy it, Mooring photographed each one and collected all the pieces. Later, she reassembled each collage on a large piece of artboard and hired a photographer to take digital photographs. Now hundreds of collages later, they're selling sometimes for as much as $1,000 each in the case of three sold at a charity auction to benefit autism.
One collage, of a pig with a downcast look and raised shoulder, gives a strong sense of isolation and sadness, Mooring said. While Wil names most of his work simply "Blue Baby" and "Pals," for instance Mooring named the pig collage "Exclusion." It was something Wil experienced, she said.
Another one of his creations is a collage of rectangles with a large figure, vaguely resembling Donald Trump, seemingly overlooking buildings. "He calls this one 'Rat,'" Mooring said.
That he can create facial expressions so well is particularly amazing, Dager said, because autistic people tend not to maintain eye contact or study facial expressions.
"Is it that their brains are wired differently? That's part of what we're studying," Dager said.
As for Wil, time for his art is a reward for doing schoolwork, Maxwell said. And when Wil begins to cut, the paper flies, the shapes emerge, the floor is littered with scraps of color and Maxwell and Mooring wait and watch for the magic.
Sunday, May 25, 2008
A brother’s story
Cristof Traudes describes his brother Erik’s struggle with Asperger’s, an enigmatic disorder that has challenged their family and Erik’s resolve.
* Editors note: Italicized text in this article represents recreated conversations. Also, Cristof Traudes learned March 14, 2008, that this 2007 story placed second nationally in Personality Profile Writing in the 48th William Randolph Hearst Foundation's Journalism Awards Program. Traudes works for a newspaper in Duluth, Minn.
I celebrated my 21st birthday last fall at a Tex-Mex restaurant north of downtown Columbia. The walls were mounted with “genuine” sombreros and large TVs tuned to ESPN. I was happy with the combination of friends who gathered — there were friends I played with in Marching Mizzou, friends from the journalism school, friends from high school.
And there was my brother, Erik, 24. He sat to my left, wearing the bright red Minnesota Twins T-shirt I had scored for him during my summer work there. It was pretty special — not every kid gets to have his big brother at his milestone birthday.
I spent a lot of the night talking to the people in my corner — my brother Erik; friends Mark, Tom, Buddy and Aaron. I turned to Buddy, an MU music student who’s been one of my best friends since our days at West Junior High School.
How’s it going? I asked. Classes and everything OK?
Yeah, Buddy said. Just the usual music school thing. Lots of practicing, lots of rehearsals. You?
It’s going well, I said. I —
Erik interrupted me midsentence.
Did you see that Georgia Tech is beating Virginia?!
Really? I said to him. Interesting. …
Neither team meant much to me.
I turned back to Buddy. I —
Whoa! Erik blurted out. Did you see the Twins’ score?
I glanced up at the TV. The Twins had lost another game that could’ve ensured them postseason play. Oh well.
I turned back to Buddy. I —
Did you — Erik again, jumping in from my left. I tried to ignore him.
— am doing well. The J-School —
Did you —
— is keeping me —
Whoa! Did you —
I never finished my conversation with Buddy. But that’s a given when Erik’s around.
It’s always been that way.
But it’s barely been a year since I understood why.
My brother has Asperger’s syndrome.
Two brothers
Erik and I both stand 5 feet 10 inches tall. We’re both relatively skinny, although he’s starting to develop a little gut. We’ve both worked at Schnucks grocery store as baggers and cashiers for more than four years, often on the same shift. And despite our three-year difference in age, we’re both seniors at MU, scheduled to graduate in May.
The similarities end there.
Erik excels at math. I get lost once the “pre” is dropped from “precalculus.”
Erik loves science fiction. I could do without the science.
Erik mellows out to the soothing sounds of Sarah McLachlan. Give me Dave Matthews Band.
And while I’m mostly indifferent about baseball and video games, Erik can — and will — talk your ear off about either.
He can rattle off the winningest manager of the St. Louis Cardinals (Red Schoendienst, followed closely by Tony LaRussa) and how many years it took to create the latest installment of the fighting game “Soul Calibur” (two).
He can tell you the year St. Louis was introduced to Major League Baseball (1882, with the creation of the St. Louis Brown Stockings) and the name, properly spelled, of the creator of the Super Mario Bros. franchise (Shigeru Miyamoto).
When my friends meet Erik, his rapid-fire knowledge first impresses, then baffles and, finally, annoys. But after trying to signal with yawns, frowns and turned heads that they’re ready to stop listening, he just keeps talking.
That’s usually the point when they come to me and ask why my brother is so weird. For years, I secretly asked myself the same question.
Now I can tell them he has Asperger’s syndrome, a “mild” neurological disorder in the same spectrum as autism. That puts Erik in fast-growing company; as many as one in 150 children in America suffer from some form of autism, according to a study released in February by the Centers for Disease Control.
What I don’t often tell friends is that Erik’s obsessions are just one characteristic of his condition. They don’t know how much he struggled in school despite his superior intelligence. They don’t know about the long nights of crying, or that his mysterious and stubborn behavior strained my family to a breaking point. They don’t know that we lived with this mystery for 23 years, not knowing what caused it and when — or if — it would end.
The world of psychology is almost as much in the dark about these aspects of Asperger’s. It acknowledged the disorder’s existence little more than a decade ago; research remains in the discovery phase.
Some things about Asperger’s are generally known. For example, its symptoms vary greatly from person to person. Some might have obsessive routines, or sensitivity to bright lights and loud sounds. Others have major motor-skill problems or are considered “little professors” because of a precocious formal speaking style.
Asperger’s is five times as likely to appear in males as it is in females. Like all forms of autism, it is being diagnosed at an increasing rate in both children and adults. It stands out because it’s a “high-functioning” disorder, usually not accompanied by problems with language development or similar learning skills.
The most universal aspect of Asperger’s, however, isn’t a scientific fact. Rather, it’s what makes its label as a “mild” disorder sadly ironic. It’s the social side: Most of those with Asperger’s have normal intelligence and verbal skills, but their fixation on select topics makes it hard for them to take part in the give-and-take of regular conversation.
As children, people with Asperger’s tend to get bullied. As adults, they often get labeled as weird and have trouble in the job market while they struggle at maintaining relationships.
Preschool
Two-year-old Erik had short, fine blond hair, brown eyes and soft, pale skin. His face was a miniature carbon of Dad’s. He laughed with his mouth wide open, exposing a tiny pair of buck teeth. People often told my parents how pretty he was.
In Mrs. Jacks’ and Mrs. Nichols’ preschool classroom in Charlotte, N.C., he usually sat alone in a corner, absorbed in puzzles or Legos. Parents of more unruly toddlers were in awe of Erik’s calmness and his ability to keep himself entertained.
Go play with Erik, they’d tell their kids.
But the same thing happened every time.
There’d be a few moments of mutual stares, then Erik would turn back to his toy.
Hi, some child would say, eager to play.
Hi, Erik would say back.
What are you doing?
A puzzle.
Oh.
And that was where it ended.
Erik might answer some direct question. But he wouldn’t ask anything in return. He wouldn’t move over to share his toys. So the other kids would walk away and join others to play house or to color together — anything that involved interaction.
Erik was never mean. He never acted unhappy. He was just different.
At that time — 1984 — Asperger’s was not yet a part of American psychologists’ lingo. Often, those who exhibited the symptoms were either diagnosed as having a high-functioning form of autism or some vague learning disorder.
But my parents weren’t too concerned about Erik’s social isolation yet; they thought he would grow out of it.
The beginning
Our parents, Herman and Beth Traudes, had been married three years when their first son was born. They had been introduced by a mutual friend in Lexington, Ky., when Herman was stationed there for IBM and Beth was working for the county health department. Now they were living in a skinny traditional Dutch home along a canal in the heart of Herman’s native Amsterdam.
Beth was a self-proclaimed rebel and feminist who came of age in Columbia in the 1960s. When she was younger, children weren’t part of the plan. But once she was pregnant, she insisted on giving birth at home. When she went into labor on the eve of Aug. 29, 1982, the maroon sleeper-sofa in the living room was folded open and made ready. A flurry of phone calls brought two midwives and one of Herman’s sisters to the quiet house at Westlandgracht 185.
Most of the birth went off without a hitch. Except for the contractions. They were worse than expected and focused in the small of Beth’s back.
Herman got her through the pain, massaging her back until his hand was raw.
“The biggest problem of the night was that the neighbor woman had made chicken for Herman that was full of garlic,” my mother told me recently. “Dad and I were doing breathing exercises together; he was just giving me clouds of garlic.”
In the wee hours of the next morning, she gave birth to a pretty 6-pound baby boy with a dark mop of hair.
“It was extremely cool,” Mom said. “It ranks right up there as one of the happiest moments of my life.”
Primary school
Erik started primary school with everyone else. Over the years he went to birthday parties, movies and other social gatherings. He played after-school sports. But he didn’t fit in anywhere.
He knew it then, and he remembers it now.
“I don’t feel disabled,” he said. “I don’t feel like I’m weird. I just know that from everyone’s reactions.”
The “reactions” started early in primary school.
Erik was happy in his own bubble, a fantasy world where he was the star of his own TV station. He controlled the programming and, come recess, he’d rush outside and act out whatever show was on. Sometimes he was Batman. Other times, he was the 10th Teenage Mutant Ninja Turtle. (In his mind, he’d already created turtles five through nine.)
Mom remembers being called to school from time to time to observe his actions. She’d see him with his arms stretched out wide, a big grin lining his face while he ran along the playground’s perimeter. What she didn’t see was him playing with other children — because it rarely happened.
When it did, it wasn’t pretty.
One time, Erik was running along the fence when some classmates called him over. One of the boys held a piece of toast out to Erik. The others smirked.
Erik was excited by the attention. Had he been more tuned in he might have noticed that something was off. He bit into the toast.
The other boys howled.
Earlier, they all had spit on the toast and plotted to make a fool of Erik. And now the freak was eating their spit.
Bullying is a side-product that many Asperger’s children face; because they misread social cues, they are easy prey.
“Social things are so complex,” said Julie Donnelly, who heads Columbia-based Autism Support Services and has an adult son with Asperger’s. “We take (understanding them) for granted.”
If being an outcast at school wasn’t enough, Erik was also the worst player on his extracurricular soccer team — or certainly the most confused.
“He didn’t do anything,” my dad said, remembering the embarrassing Saturday mornings he spent on the sidelines. “He just stood on the field and watched the ball. He’d say, ‘Guys, there it goes.’ He just didn’t get it.”
His teammates would make their annoyance clear, and Erik would go home humiliated.
It was then that he probably started developing the depression he was diagnosed with in high school and still battles today. He was 8.
Because Asperger’s doesn’t affect intelligence, those with the disorder often understand the severity of the teasing they receive. Their mental block, however, prevents them from changing.
“The toll of meanness is tremendous,” said Nancy Minshew, director of the Autism Research Project at the University of Pittsburgh. “You know the saying, ‘sticks and stones may break my bones, but words can’t hurt me’?
“Not true.”
Home life
When Erik was 9 and I was 6, we lived in Castricum, the Netherlands, the town Erik and I still refer to as the place we grew up. It was a quaint Dutch coastal village, with traditional brick streets and open markets plus butchers and bakers included. Our house was red brick topped by an orange tile roof and looked like something out of an idyllic Dutch tourism book.
I doubt we knew it then, but our family was on the verge of falling apart.
Mom stayed home then, taking care of us and the house. Dad worked 10-hour days at IBM, feeling stuck in a managerial job he never really wanted. Every morning before Erik and I headed off to primary school, Mom would make our breakfast and Dad’s lunch.
While Mom got our cereal or toast with chocolate sprinkles ready, I’d get dressed in my second-floor room. A floor above, in Erik’s room, the drama would start.
Erik, get dressed! I’d hear my mother yell up the stairs. Erik, take 20 less minutes on your shower!
Erik, brush your teeth! And — again — Erik, get dressed!
Despite her pleas, most mornings found Erik curled up in his room, reading a video game magazine or staring off into space.
I hated the yelling, so I’d hear one order and follow it. (That stuck with me for life — I’ve often been called mature for my age, probably from watching my parents give the same orders over and over. Or maybe from not wanting to add to the chaos.)
“It was a really, really tough time,” Mom told me recently.
One exhausting morning after another, after we were finally out the door, she would sink into a living room couch, turn on the TV and try to forget what was going on around her. She’d try to forget her husband’s disaffection with a job he hated. She’d try to forget that she was thousands of miles from her parents. And she’d try to forget that she had a son who didn’t seem to be learning any of the practical aspects of life.
She said she considered leaving Dad and going back home to Missouri; she loved her husband but thought her son might be better off in the United States and would benefit from a bigger family support system. But Herman would never let her leave the Netherlands with the kids, she thought. She, too, was stuck.
That was the year my parents sent Erik to his first psychologist. They didn’t learn then that he had Asperger’s; the disorder hadn’t been identified yet. But they did learn that he needed special attention, and that it wasn’t their parenting that was at fault. They received tips, such as breaking down activities into smaller steps, on how to help him learn. “What we learned was we could not expect Erik to do what other children were doing at his age,” Mom said. “We had to meet him where he was and where his needs were. When we started doing that, when we stopped putting demands on him, the whole atmosphere in the house improved tremendously.”
It saved the marriage.
They were lucky.
Donnelly, of Columbia’s Autism Support Services, said that although more is known every day about Asperger’s, parents are often still left without much help.
“They’re forced to learn a lot themselves,” Donnelly said. “There’s a lot of need for information.”
Like twins
For all the trauma, I remember the early years as good years for Erik and me. We were more like twins than brothers.
He was 11 and I was 8 when we invented the future of video games: the Super Game Boy. Well, it was really Erik’s idea. He was the one who was always studying Nintendo.
The Super Game Boy would be a total upgrade — way cooler than the 8-bit monographic system that ruled handheld gaming at the time: Four more action buttons, a full-color screen and high-energy games.
During a creative burst one rainy afternoon, Erik and I bolted into my room and dug into my supply of paper and colored pencils. I carefully sketched the Super Game Boy. “This is it,” I said, showing off my drawing. “Cool,” Erik said, taking a break from his part of the production: the games.
He concocted the SGB version of “Street Fighter 2” and an SGB “Super Mario Bros.” They were just drawings of game cartridges, but to us, they came alive. We put the paper games into our paper
continued from page 11A
Super Game Boy, and voila! We played for hours.
It would take at least another four years before we started to pull apart. But it wasn’t because Erik had become a teenager with better things to do than hang with his baby brother. It was because I had outgrown him.
I wasn’t proud of that fact then. I’m still not.
High school
An IQ test administered by the MU Assessment and Consultation Clinic in 2006 placed Erik in the 99th percentile compared to others in his age group. Still, school was never easy for him.
We had moved to Columbia a
year earlier, in 1998, to be closer to Mom’s family. Erik and I had to leave our Dutch roots behind and adopt American culture. But I was mostly excited. I could refresh my image, make it whatever I wanted it to be. It would be a time for reinvention.
For Erik, there was no reinvention. Just recurrence.
On the surface, Hickman High School was refreshing for him. As one of 2,000-plus students, he found it easier to blend into the background there, which enabled him to stop being a target for bullies. He also found people who shared his passion for the fantasy card game “Magic: The Gathering.” Playing cards masked his social awkwardness.
But the high of having friends at school was a stark contrast to the despair he felt at home. As with my parents’ shouts up the stairs back in Castricum, I was a silent witness to that despair.
Erik and I had adjacent rooms in our traditional 1930s red-brick home in Columbia’s Old Southwest neighborhood. But more and more, we were less and less alike.
My room was tiny. My neatly made twin-size bed covered more than a third of the floor. Organizing became a strategic challenge. Dad bolted shelves to the green walls. A hutch added space to my skinny desk; trinkets, photos and issues of Rolling Stone were arranged inside with care. There was minimal decoration. My one poster — a massive 5-by-7-footer of the Beastie Boys — demanded total attention.
Erik’s walls were green, too. But his were plastered with posters: Yoshi, Mario, Luigi — all centerfold regulars in Nintendo Power magazine. His room was much larger, but that didn’t mean it was easier to maneuver. His double bed was rarely made. His three bookcases were stuffed with “Star Trek” fan fiction, “Hardy Boys” novels and classic American literature. His large computer desk was littered with dirty dishes and silverware. He would have had space to spare had it not been for a 2-inch thick sea of school papers and handouts that blanketed the floor.
Lying in my tiny, neat room — separated from my brother by one wall — I listened to Erik’s reality and realized I was becoming the older brother.
The tears usually started around 11 p.m. or midnight. Mom would come from down the hallway, the hardwood floor creaking under her feet.
What’s wrong? she’d ask.
I just — I just — can’t, you know, I’d hear Erik mumble. Sniffles would interrupt and garble his words. His unfinished homework would lie on his cluttered desk like an accusation. I can’t.
Sure you can, my mom would urge.
I just — I just — I ....
He explained it to me recently, the difficulty he has with schoolwork. His mind wants to start wandering as soon as he sits down. Once he finally gets focused, it takes only the smallest snag, whether it’s a question that’s too hard or a little worry that his essay won’t be the best in the class, to set his mind off again. He’d hit snag after snag until, around midnight, he’d realize he wouldn’t be able to finish the assignment. And that bothered him, because he’d always considered himself a prime student.
“I never have been able to effectively sit down and just do homework,” he said. “… I can write well. I’m a good writer. I just can’t sit down and do it.”
Many with Asperger’s have a similar experience.
“They want people to think they are really intelligent,” said Pittsburgh University’s Minshew. “They don’t want to be seen as failures.”
The problem can be compounded in the classroom. While most teachers know how to deal with students who don’t want to do homework, they aren’t always as prepared to deal with those who want to but can’t because of a mental block.
Donnelly, who works part time as a consultant for Columbia Public Schools, said some teachers take it personally when students who test high for intelligence seem to blow off their homework.
“Teachers (of students with Asperger’s) are always saying, ‘He’s rude and disrespectful,’” Donnelly said. “They need more understanding.”
For me, Erik’s educational lapses created a dark understanding: I would eclipse my older brother — the older brother whose fantasy world I once thrived in, the older brother I grew up wanting to be like.
Hearing him cry through the wall was also the first time I felt complete empathy for him.
The second time was when he flunked out of MU.
College
Erik walked across the stage of the Hearnes Center on June 3, 2000, wearing the bright purple gown and mortarboard of Hickman High. He flashed the wide-open grin of his childhood.
“I was really happy,” he told me. “I knew I was going to be going to college. It was going to kick ass and I was going to be out in four years.”
Statistics were against him. Deborah Wright, clinic director at the MU Assessment and Consultation Clinic, said many students with Asperger’s syndrome take eight to nine years to finish college. Others drop out entirely.
Erik started at MU as a computer science major intending to program his own video games one day. He moved into a dormitory. He and his roommate had little in common and barely talked.
It was one of the happiest times of his life.
He could play video games without getting so absorbed in them that his schoolwork faltered. His depression was receding, despite having little social interaction. At fall’s end, his grade-point average was 3.579 out of a possible 4.
Spring semester was different.
Erik was still happy. He was making a slew of new friends. All of them were deeply interested in video games and seemed to spend all of their time playing them — just as Erik wanted to do. He even started dating.
It was a social high point for the former boy in the corner.
But Erik’s mind was where it had always been. While he thought his friends played video games 24/7, they were able to set them aside for the two to three hours they needed to do homework. When time came for Erik to do the same, the added social distractions made him forget his priorities.
His grade point plunged to 1.136. Seven months later, it was 0.900.
MU booted him.
He moved back home. He worked part time at the grocery store. He lost his pride, his joy and his hope. He took a deep plunge back into depression. The former nights spent in anguish about high school homework were nothing compared to these months worrying about his future.
“They say you can accomplish whatever you set your mind to,” Erik said to me recently, eyebrows tightened together. “Setting my mind to it isn’t enough. You also have to set effort to it. But when I hit a snag, that was it.”
Dad
Predominant evidence shows Asperger’s is a hereditary disorder. My father has always quietly felt responsible for Erik’s differences.
* Editors note: Italicized text in this article represents recreated conversations. Also, Cristof Traudes learned March 14, 2008, that this 2007 story placed second nationally in Personality Profile Writing in the 48th William Randolph Hearst Foundation's Journalism Awards Program. Traudes works for a newspaper in Duluth, Minn.
I celebrated my 21st birthday last fall at a Tex-Mex restaurant north of downtown Columbia. The walls were mounted with “genuine” sombreros and large TVs tuned to ESPN. I was happy with the combination of friends who gathered — there were friends I played with in Marching Mizzou, friends from the journalism school, friends from high school.
And there was my brother, Erik, 24. He sat to my left, wearing the bright red Minnesota Twins T-shirt I had scored for him during my summer work there. It was pretty special — not every kid gets to have his big brother at his milestone birthday.
I spent a lot of the night talking to the people in my corner — my brother Erik; friends Mark, Tom, Buddy and Aaron. I turned to Buddy, an MU music student who’s been one of my best friends since our days at West Junior High School.
How’s it going? I asked. Classes and everything OK?
Yeah, Buddy said. Just the usual music school thing. Lots of practicing, lots of rehearsals. You?
It’s going well, I said. I —
Erik interrupted me midsentence.
Did you see that Georgia Tech is beating Virginia?!
Really? I said to him. Interesting. …
Neither team meant much to me.
I turned back to Buddy. I —
Whoa! Erik blurted out. Did you see the Twins’ score?
I glanced up at the TV. The Twins had lost another game that could’ve ensured them postseason play. Oh well.
I turned back to Buddy. I —
Did you — Erik again, jumping in from my left. I tried to ignore him.
— am doing well. The J-School —
Did you —
— is keeping me —
Whoa! Did you —
I never finished my conversation with Buddy. But that’s a given when Erik’s around.
It’s always been that way.
But it’s barely been a year since I understood why.
My brother has Asperger’s syndrome.
Two brothers
Erik and I both stand 5 feet 10 inches tall. We’re both relatively skinny, although he’s starting to develop a little gut. We’ve both worked at Schnucks grocery store as baggers and cashiers for more than four years, often on the same shift. And despite our three-year difference in age, we’re both seniors at MU, scheduled to graduate in May.
The similarities end there.
Erik excels at math. I get lost once the “pre” is dropped from “precalculus.”
Erik loves science fiction. I could do without the science.
Erik mellows out to the soothing sounds of Sarah McLachlan. Give me Dave Matthews Band.
And while I’m mostly indifferent about baseball and video games, Erik can — and will — talk your ear off about either.
He can rattle off the winningest manager of the St. Louis Cardinals (Red Schoendienst, followed closely by Tony LaRussa) and how many years it took to create the latest installment of the fighting game “Soul Calibur” (two).
He can tell you the year St. Louis was introduced to Major League Baseball (1882, with the creation of the St. Louis Brown Stockings) and the name, properly spelled, of the creator of the Super Mario Bros. franchise (Shigeru Miyamoto).
When my friends meet Erik, his rapid-fire knowledge first impresses, then baffles and, finally, annoys. But after trying to signal with yawns, frowns and turned heads that they’re ready to stop listening, he just keeps talking.
That’s usually the point when they come to me and ask why my brother is so weird. For years, I secretly asked myself the same question.
Now I can tell them he has Asperger’s syndrome, a “mild” neurological disorder in the same spectrum as autism. That puts Erik in fast-growing company; as many as one in 150 children in America suffer from some form of autism, according to a study released in February by the Centers for Disease Control.
What I don’t often tell friends is that Erik’s obsessions are just one characteristic of his condition. They don’t know how much he struggled in school despite his superior intelligence. They don’t know about the long nights of crying, or that his mysterious and stubborn behavior strained my family to a breaking point. They don’t know that we lived with this mystery for 23 years, not knowing what caused it and when — or if — it would end.
The world of psychology is almost as much in the dark about these aspects of Asperger’s. It acknowledged the disorder’s existence little more than a decade ago; research remains in the discovery phase.
Some things about Asperger’s are generally known. For example, its symptoms vary greatly from person to person. Some might have obsessive routines, or sensitivity to bright lights and loud sounds. Others have major motor-skill problems or are considered “little professors” because of a precocious formal speaking style.
Asperger’s is five times as likely to appear in males as it is in females. Like all forms of autism, it is being diagnosed at an increasing rate in both children and adults. It stands out because it’s a “high-functioning” disorder, usually not accompanied by problems with language development or similar learning skills.
The most universal aspect of Asperger’s, however, isn’t a scientific fact. Rather, it’s what makes its label as a “mild” disorder sadly ironic. It’s the social side: Most of those with Asperger’s have normal intelligence and verbal skills, but their fixation on select topics makes it hard for them to take part in the give-and-take of regular conversation.
As children, people with Asperger’s tend to get bullied. As adults, they often get labeled as weird and have trouble in the job market while they struggle at maintaining relationships.
Preschool
Two-year-old Erik had short, fine blond hair, brown eyes and soft, pale skin. His face was a miniature carbon of Dad’s. He laughed with his mouth wide open, exposing a tiny pair of buck teeth. People often told my parents how pretty he was.
In Mrs. Jacks’ and Mrs. Nichols’ preschool classroom in Charlotte, N.C., he usually sat alone in a corner, absorbed in puzzles or Legos. Parents of more unruly toddlers were in awe of Erik’s calmness and his ability to keep himself entertained.
Go play with Erik, they’d tell their kids.
But the same thing happened every time.
There’d be a few moments of mutual stares, then Erik would turn back to his toy.
Hi, some child would say, eager to play.
Hi, Erik would say back.
What are you doing?
A puzzle.
Oh.
And that was where it ended.
Erik might answer some direct question. But he wouldn’t ask anything in return. He wouldn’t move over to share his toys. So the other kids would walk away and join others to play house or to color together — anything that involved interaction.
Erik was never mean. He never acted unhappy. He was just different.
At that time — 1984 — Asperger’s was not yet a part of American psychologists’ lingo. Often, those who exhibited the symptoms were either diagnosed as having a high-functioning form of autism or some vague learning disorder.
But my parents weren’t too concerned about Erik’s social isolation yet; they thought he would grow out of it.
The beginning
Our parents, Herman and Beth Traudes, had been married three years when their first son was born. They had been introduced by a mutual friend in Lexington, Ky., when Herman was stationed there for IBM and Beth was working for the county health department. Now they were living in a skinny traditional Dutch home along a canal in the heart of Herman’s native Amsterdam.
Beth was a self-proclaimed rebel and feminist who came of age in Columbia in the 1960s. When she was younger, children weren’t part of the plan. But once she was pregnant, she insisted on giving birth at home. When she went into labor on the eve of Aug. 29, 1982, the maroon sleeper-sofa in the living room was folded open and made ready. A flurry of phone calls brought two midwives and one of Herman’s sisters to the quiet house at Westlandgracht 185.
Most of the birth went off without a hitch. Except for the contractions. They were worse than expected and focused in the small of Beth’s back.
Herman got her through the pain, massaging her back until his hand was raw.
“The biggest problem of the night was that the neighbor woman had made chicken for Herman that was full of garlic,” my mother told me recently. “Dad and I were doing breathing exercises together; he was just giving me clouds of garlic.”
In the wee hours of the next morning, she gave birth to a pretty 6-pound baby boy with a dark mop of hair.
“It was extremely cool,” Mom said. “It ranks right up there as one of the happiest moments of my life.”
Primary school
Erik started primary school with everyone else. Over the years he went to birthday parties, movies and other social gatherings. He played after-school sports. But he didn’t fit in anywhere.
He knew it then, and he remembers it now.
“I don’t feel disabled,” he said. “I don’t feel like I’m weird. I just know that from everyone’s reactions.”
The “reactions” started early in primary school.
Erik was happy in his own bubble, a fantasy world where he was the star of his own TV station. He controlled the programming and, come recess, he’d rush outside and act out whatever show was on. Sometimes he was Batman. Other times, he was the 10th Teenage Mutant Ninja Turtle. (In his mind, he’d already created turtles five through nine.)
Mom remembers being called to school from time to time to observe his actions. She’d see him with his arms stretched out wide, a big grin lining his face while he ran along the playground’s perimeter. What she didn’t see was him playing with other children — because it rarely happened.
When it did, it wasn’t pretty.
One time, Erik was running along the fence when some classmates called him over. One of the boys held a piece of toast out to Erik. The others smirked.
Erik was excited by the attention. Had he been more tuned in he might have noticed that something was off. He bit into the toast.
The other boys howled.
Earlier, they all had spit on the toast and plotted to make a fool of Erik. And now the freak was eating their spit.
Bullying is a side-product that many Asperger’s children face; because they misread social cues, they are easy prey.
“Social things are so complex,” said Julie Donnelly, who heads Columbia-based Autism Support Services and has an adult son with Asperger’s. “We take (understanding them) for granted.”
If being an outcast at school wasn’t enough, Erik was also the worst player on his extracurricular soccer team — or certainly the most confused.
“He didn’t do anything,” my dad said, remembering the embarrassing Saturday mornings he spent on the sidelines. “He just stood on the field and watched the ball. He’d say, ‘Guys, there it goes.’ He just didn’t get it.”
His teammates would make their annoyance clear, and Erik would go home humiliated.
It was then that he probably started developing the depression he was diagnosed with in high school and still battles today. He was 8.
Because Asperger’s doesn’t affect intelligence, those with the disorder often understand the severity of the teasing they receive. Their mental block, however, prevents them from changing.
“The toll of meanness is tremendous,” said Nancy Minshew, director of the Autism Research Project at the University of Pittsburgh. “You know the saying, ‘sticks and stones may break my bones, but words can’t hurt me’?
“Not true.”
Home life
When Erik was 9 and I was 6, we lived in Castricum, the Netherlands, the town Erik and I still refer to as the place we grew up. It was a quaint Dutch coastal village, with traditional brick streets and open markets plus butchers and bakers included. Our house was red brick topped by an orange tile roof and looked like something out of an idyllic Dutch tourism book.
I doubt we knew it then, but our family was on the verge of falling apart.
Mom stayed home then, taking care of us and the house. Dad worked 10-hour days at IBM, feeling stuck in a managerial job he never really wanted. Every morning before Erik and I headed off to primary school, Mom would make our breakfast and Dad’s lunch.
While Mom got our cereal or toast with chocolate sprinkles ready, I’d get dressed in my second-floor room. A floor above, in Erik’s room, the drama would start.
Erik, get dressed! I’d hear my mother yell up the stairs. Erik, take 20 less minutes on your shower!
Erik, brush your teeth! And — again — Erik, get dressed!
Despite her pleas, most mornings found Erik curled up in his room, reading a video game magazine or staring off into space.
I hated the yelling, so I’d hear one order and follow it. (That stuck with me for life — I’ve often been called mature for my age, probably from watching my parents give the same orders over and over. Or maybe from not wanting to add to the chaos.)
“It was a really, really tough time,” Mom told me recently.
One exhausting morning after another, after we were finally out the door, she would sink into a living room couch, turn on the TV and try to forget what was going on around her. She’d try to forget her husband’s disaffection with a job he hated. She’d try to forget that she was thousands of miles from her parents. And she’d try to forget that she had a son who didn’t seem to be learning any of the practical aspects of life.
She said she considered leaving Dad and going back home to Missouri; she loved her husband but thought her son might be better off in the United States and would benefit from a bigger family support system. But Herman would never let her leave the Netherlands with the kids, she thought. She, too, was stuck.
That was the year my parents sent Erik to his first psychologist. They didn’t learn then that he had Asperger’s; the disorder hadn’t been identified yet. But they did learn that he needed special attention, and that it wasn’t their parenting that was at fault. They received tips, such as breaking down activities into smaller steps, on how to help him learn. “What we learned was we could not expect Erik to do what other children were doing at his age,” Mom said. “We had to meet him where he was and where his needs were. When we started doing that, when we stopped putting demands on him, the whole atmosphere in the house improved tremendously.”
It saved the marriage.
They were lucky.
Donnelly, of Columbia’s Autism Support Services, said that although more is known every day about Asperger’s, parents are often still left without much help.
“They’re forced to learn a lot themselves,” Donnelly said. “There’s a lot of need for information.”
Like twins
For all the trauma, I remember the early years as good years for Erik and me. We were more like twins than brothers.
He was 11 and I was 8 when we invented the future of video games: the Super Game Boy. Well, it was really Erik’s idea. He was the one who was always studying Nintendo.
The Super Game Boy would be a total upgrade — way cooler than the 8-bit monographic system that ruled handheld gaming at the time: Four more action buttons, a full-color screen and high-energy games.
During a creative burst one rainy afternoon, Erik and I bolted into my room and dug into my supply of paper and colored pencils. I carefully sketched the Super Game Boy. “This is it,” I said, showing off my drawing. “Cool,” Erik said, taking a break from his part of the production: the games.
He concocted the SGB version of “Street Fighter 2” and an SGB “Super Mario Bros.” They were just drawings of game cartridges, but to us, they came alive. We put the paper games into our paper
continued from page 11A
Super Game Boy, and voila! We played for hours.
It would take at least another four years before we started to pull apart. But it wasn’t because Erik had become a teenager with better things to do than hang with his baby brother. It was because I had outgrown him.
I wasn’t proud of that fact then. I’m still not.
High school
An IQ test administered by the MU Assessment and Consultation Clinic in 2006 placed Erik in the 99th percentile compared to others in his age group. Still, school was never easy for him.
We had moved to Columbia a
year earlier, in 1998, to be closer to Mom’s family. Erik and I had to leave our Dutch roots behind and adopt American culture. But I was mostly excited. I could refresh my image, make it whatever I wanted it to be. It would be a time for reinvention.
For Erik, there was no reinvention. Just recurrence.
On the surface, Hickman High School was refreshing for him. As one of 2,000-plus students, he found it easier to blend into the background there, which enabled him to stop being a target for bullies. He also found people who shared his passion for the fantasy card game “Magic: The Gathering.” Playing cards masked his social awkwardness.
But the high of having friends at school was a stark contrast to the despair he felt at home. As with my parents’ shouts up the stairs back in Castricum, I was a silent witness to that despair.
Erik and I had adjacent rooms in our traditional 1930s red-brick home in Columbia’s Old Southwest neighborhood. But more and more, we were less and less alike.
My room was tiny. My neatly made twin-size bed covered more than a third of the floor. Organizing became a strategic challenge. Dad bolted shelves to the green walls. A hutch added space to my skinny desk; trinkets, photos and issues of Rolling Stone were arranged inside with care. There was minimal decoration. My one poster — a massive 5-by-7-footer of the Beastie Boys — demanded total attention.
Erik’s walls were green, too. But his were plastered with posters: Yoshi, Mario, Luigi — all centerfold regulars in Nintendo Power magazine. His room was much larger, but that didn’t mean it was easier to maneuver. His double bed was rarely made. His three bookcases were stuffed with “Star Trek” fan fiction, “Hardy Boys” novels and classic American literature. His large computer desk was littered with dirty dishes and silverware. He would have had space to spare had it not been for a 2-inch thick sea of school papers and handouts that blanketed the floor.
Lying in my tiny, neat room — separated from my brother by one wall — I listened to Erik’s reality and realized I was becoming the older brother.
The tears usually started around 11 p.m. or midnight. Mom would come from down the hallway, the hardwood floor creaking under her feet.
What’s wrong? she’d ask.
I just — I just — can’t, you know, I’d hear Erik mumble. Sniffles would interrupt and garble his words. His unfinished homework would lie on his cluttered desk like an accusation. I can’t.
Sure you can, my mom would urge.
I just — I just — I ....
He explained it to me recently, the difficulty he has with schoolwork. His mind wants to start wandering as soon as he sits down. Once he finally gets focused, it takes only the smallest snag, whether it’s a question that’s too hard or a little worry that his essay won’t be the best in the class, to set his mind off again. He’d hit snag after snag until, around midnight, he’d realize he wouldn’t be able to finish the assignment. And that bothered him, because he’d always considered himself a prime student.
“I never have been able to effectively sit down and just do homework,” he said. “… I can write well. I’m a good writer. I just can’t sit down and do it.”
Many with Asperger’s have a similar experience.
“They want people to think they are really intelligent,” said Pittsburgh University’s Minshew. “They don’t want to be seen as failures.”
The problem can be compounded in the classroom. While most teachers know how to deal with students who don’t want to do homework, they aren’t always as prepared to deal with those who want to but can’t because of a mental block.
Donnelly, who works part time as a consultant for Columbia Public Schools, said some teachers take it personally when students who test high for intelligence seem to blow off their homework.
“Teachers (of students with Asperger’s) are always saying, ‘He’s rude and disrespectful,’” Donnelly said. “They need more understanding.”
For me, Erik’s educational lapses created a dark understanding: I would eclipse my older brother — the older brother whose fantasy world I once thrived in, the older brother I grew up wanting to be like.
Hearing him cry through the wall was also the first time I felt complete empathy for him.
The second time was when he flunked out of MU.
College
Erik walked across the stage of the Hearnes Center on June 3, 2000, wearing the bright purple gown and mortarboard of Hickman High. He flashed the wide-open grin of his childhood.
“I was really happy,” he told me. “I knew I was going to be going to college. It was going to kick ass and I was going to be out in four years.”
Statistics were against him. Deborah Wright, clinic director at the MU Assessment and Consultation Clinic, said many students with Asperger’s syndrome take eight to nine years to finish college. Others drop out entirely.
Erik started at MU as a computer science major intending to program his own video games one day. He moved into a dormitory. He and his roommate had little in common and barely talked.
It was one of the happiest times of his life.
He could play video games without getting so absorbed in them that his schoolwork faltered. His depression was receding, despite having little social interaction. At fall’s end, his grade-point average was 3.579 out of a possible 4.
Spring semester was different.
Erik was still happy. He was making a slew of new friends. All of them were deeply interested in video games and seemed to spend all of their time playing them — just as Erik wanted to do. He even started dating.
It was a social high point for the former boy in the corner.
But Erik’s mind was where it had always been. While he thought his friends played video games 24/7, they were able to set them aside for the two to three hours they needed to do homework. When time came for Erik to do the same, the added social distractions made him forget his priorities.
His grade point plunged to 1.136. Seven months later, it was 0.900.
MU booted him.
He moved back home. He worked part time at the grocery store. He lost his pride, his joy and his hope. He took a deep plunge back into depression. The former nights spent in anguish about high school homework were nothing compared to these months worrying about his future.
“They say you can accomplish whatever you set your mind to,” Erik said to me recently, eyebrows tightened together. “Setting my mind to it isn’t enough. You also have to set effort to it. But when I hit a snag, that was it.”
Dad
Predominant evidence shows Asperger’s is a hereditary disorder. My father has always quietly felt responsible for Erik’s differences.
Music critic describes life wth Asperger's syndrome
Pulitzer Prize-winning music critic Tim Page is being brought to MU by the schools of Journalism and Music, the Thompson Center, the Center for Arts and Humanities and MU Extension’s Community Development. A story on page 1A Friday of the Missourian left out three of the sponsoring groups.
COLUMBIA — Tim Page wouldn’t wish Asperger’s syndrome on anyone.
As a kid, he fixated with feverish intensity on details the rest of the world overlooked. He immersed himself in a handful of topics — music, silent films, large chunks of the 1961 Worldbook Encyclopedia — and vigorously absorbed everything he could about them.
In spite of his zest for learning, he struggled through school. Teachers sometimes called him a genius. Then, they’d assign him failing grades.
In his career, Page said he’s angered people with his tendency to offer unfiltered opinions, a product of his perpetual struggle to recognize and decipher social cues. In his personal sphere, forging friendships and relationships has been a lifelong labor. Page has lived much of his life shouldering burdens of confusion, isolation and unhappiness.
“It’s been kind of a lonely life and remains a lonely life,” Page said. “You get the sense that you don’t have the connections with people you’d like to have.”
An estimated four to five out of every 10,000 people have Asperger’s Syndrome, an autism spectrum disorder that hinders social interactions and entails intense fixation on topics that are often offbeat and “are not always productive”, said Janet Farmer, co-director of the Thompson Center for Autism & Neurodevelopmental Disorders at MU.
“You might have a child who gets very interested with sea animals, air conditioners, presidents,” Farmer said. “And they sometimes have negative interactions with other people. In other words, it can be very disabling.”
Page, however, has transformed disability into ability. It’s a real-life twist on making lemonade out of lemons: When life handed Page Asperger’s Syndrome, he forged an illustrious career out of music criticism.
“Would I wish Asperger’s on anybody? No,” said Page, who was diagnosed in 2000. “On the other hand, it seems to me that a lot of things I did and am doing in my life happened because I had Asperger’s.”
At 53, Page has a formidable resume that could incite envy among journalists and music afficianados many years his senior. He will visit MU on Monday and Tuesday, offering a series of lectures and discussions about his disorder, his career and the symbiosis between them. He worked for the Washington Post critiquing classical music starting in 1995. In 1997, he won a Pulitzer Prize in criticism for his work with the Post — work the Pulitzer board called “lucid and illuminating.” He used to be the chief music critic for Newsday, penned stories about music and culture for The New York Times and was the St. Louis Symphony Orchestra’s artistic adviser and creative chair from 1999 to 2001.
Now, Page is a visiting professor with the Annenberg School of Journalism at the University of Southern California.
In 2009, Page will be able to pencil in “autobiographer” on his resume, when he’ll release a memoir detailing his experience with Asperger’s Syndrome. In August 2007, Page wrote a similarly themed piece for The New Yorker called “Parallel Play: A Lifetime of Restless Isolation Explained.”
After reading the article, Sandra Hodge, an associate professor at MU, contacted Page via e-mail to see if he’d be interested in visiting campus, figuring “the worst thing he could say would be no.”
Spearheaded by Hodge, bringing Page to MU was a collaborative effort among the journalism and music schools, the Thompson Center, the Center for Arts and Humanities and University Extension, Community Development. Page’s main appearance will be a University of Missouri Distinguished Lecture Monday evening.
“He’s achieved all these wonderful things in his life,” Hodge said. “I think he’s an inspiration for parents whose children may have the same syndrome. He’s met a number of challenges and has been very successful."
Finding his niche didn’t necessarily take a lot of work. When it came to music, Page said he took to it “like a duck to water.”
“Music was not something I had to learn about from middle C,” Page said. “I knew about it intrinsically from the moment I heard it and needed to learn how to deal with that, how to put that together. There’s no doubt that it had something to do with (Asperger’s) because I was extraordinarily sensitive to music from the time I was two or three. After that, I just inhaled it.”
Paired with a knack for writing, Page’s passion paved a path to success. It’s this kind of success that Farmer said can offer real inspiration to people whose lives are affected by autism spectrum disorders.
“It’s an important message about how you shouldn’t make assumptions about an individual that are negative,” Farmer said. “They may be able to find a perfect match and be very successful in life.”
Professional success aside, Page is straightforward about the obstacles he’s faced on a more personal level, citing two marriages that ended in divorce.
“Would I give up my Pulitzer for a really, really ecstatic and happy marriage?” Page said. “Yeah, I probably would, but maybe I don’t have to choose one or the other.”
Though he’s frank about its challenges, Page said Asperger’s shouldn’t be looked at as “some sort of horrible emotional death sentence.” With three sons and many friends he cherishes, Page maintains a relatively positive outlook on life.
“I’ve had a lot of the blessings that life has,” Page said. “It’s just a little complicated. Everybody’s life has some rain in it.”
COLUMBIA — Tim Page wouldn’t wish Asperger’s syndrome on anyone.
As a kid, he fixated with feverish intensity on details the rest of the world overlooked. He immersed himself in a handful of topics — music, silent films, large chunks of the 1961 Worldbook Encyclopedia — and vigorously absorbed everything he could about them.
In spite of his zest for learning, he struggled through school. Teachers sometimes called him a genius. Then, they’d assign him failing grades.
In his career, Page said he’s angered people with his tendency to offer unfiltered opinions, a product of his perpetual struggle to recognize and decipher social cues. In his personal sphere, forging friendships and relationships has been a lifelong labor. Page has lived much of his life shouldering burdens of confusion, isolation and unhappiness.
“It’s been kind of a lonely life and remains a lonely life,” Page said. “You get the sense that you don’t have the connections with people you’d like to have.”
An estimated four to five out of every 10,000 people have Asperger’s Syndrome, an autism spectrum disorder that hinders social interactions and entails intense fixation on topics that are often offbeat and “are not always productive”, said Janet Farmer, co-director of the Thompson Center for Autism & Neurodevelopmental Disorders at MU.
“You might have a child who gets very interested with sea animals, air conditioners, presidents,” Farmer said. “And they sometimes have negative interactions with other people. In other words, it can be very disabling.”
Page, however, has transformed disability into ability. It’s a real-life twist on making lemonade out of lemons: When life handed Page Asperger’s Syndrome, he forged an illustrious career out of music criticism.
“Would I wish Asperger’s on anybody? No,” said Page, who was diagnosed in 2000. “On the other hand, it seems to me that a lot of things I did and am doing in my life happened because I had Asperger’s.”
At 53, Page has a formidable resume that could incite envy among journalists and music afficianados many years his senior. He will visit MU on Monday and Tuesday, offering a series of lectures and discussions about his disorder, his career and the symbiosis between them. He worked for the Washington Post critiquing classical music starting in 1995. In 1997, he won a Pulitzer Prize in criticism for his work with the Post — work the Pulitzer board called “lucid and illuminating.” He used to be the chief music critic for Newsday, penned stories about music and culture for The New York Times and was the St. Louis Symphony Orchestra’s artistic adviser and creative chair from 1999 to 2001.
Now, Page is a visiting professor with the Annenberg School of Journalism at the University of Southern California.
In 2009, Page will be able to pencil in “autobiographer” on his resume, when he’ll release a memoir detailing his experience with Asperger’s Syndrome. In August 2007, Page wrote a similarly themed piece for The New Yorker called “Parallel Play: A Lifetime of Restless Isolation Explained.”
After reading the article, Sandra Hodge, an associate professor at MU, contacted Page via e-mail to see if he’d be interested in visiting campus, figuring “the worst thing he could say would be no.”
Spearheaded by Hodge, bringing Page to MU was a collaborative effort among the journalism and music schools, the Thompson Center, the Center for Arts and Humanities and University Extension, Community Development. Page’s main appearance will be a University of Missouri Distinguished Lecture Monday evening.
“He’s achieved all these wonderful things in his life,” Hodge said. “I think he’s an inspiration for parents whose children may have the same syndrome. He’s met a number of challenges and has been very successful."
Finding his niche didn’t necessarily take a lot of work. When it came to music, Page said he took to it “like a duck to water.”
“Music was not something I had to learn about from middle C,” Page said. “I knew about it intrinsically from the moment I heard it and needed to learn how to deal with that, how to put that together. There’s no doubt that it had something to do with (Asperger’s) because I was extraordinarily sensitive to music from the time I was two or three. After that, I just inhaled it.”
Paired with a knack for writing, Page’s passion paved a path to success. It’s this kind of success that Farmer said can offer real inspiration to people whose lives are affected by autism spectrum disorders.
“It’s an important message about how you shouldn’t make assumptions about an individual that are negative,” Farmer said. “They may be able to find a perfect match and be very successful in life.”
Professional success aside, Page is straightforward about the obstacles he’s faced on a more personal level, citing two marriages that ended in divorce.
“Would I give up my Pulitzer for a really, really ecstatic and happy marriage?” Page said. “Yeah, I probably would, but maybe I don’t have to choose one or the other.”
Though he’s frank about its challenges, Page said Asperger’s shouldn’t be looked at as “some sort of horrible emotional death sentence.” With three sons and many friends he cherishes, Page maintains a relatively positive outlook on life.
“I’ve had a lot of the blessings that life has,” Page said. “It’s just a little complicated. Everybody’s life has some rain in it.”
“I can’t change my Asperger’s Syndrome so I may as well get on with what I can do”
Neil Shepherd – Software Developer
Introduction
Software Developer, Neil Shepherd was shocked to discover he had Asperger’s Syndrome. Up until the age of about 31, he had lived with the condition without even knowing he had it. Asperger’s Syndrome is a form of autism and is often referred to as a hidden disability because it is not easily recognised. It’s also described as a 'spectrum disorder' because it affects people in different ways. According to the National Autistic Society, people with Asperger’s Syndrome have difficulties with social communication, social interaction and social imagination.
However, Neil’s disability has not been a barrier to his career. He is a computer science graduate and has been able to find employment that allows him to make the best use of his qualifications and his talents. “I need to keep busy all the time and I find my work challenging, in a positive way” says Neil who works for Esteem, an IT company.
Employer's story
Although the nature of the professional work at Esteem is highly technical, Human Resources Manager, Joanne Smart, always looks for more than technical skills and qualifications when recruiting new staff. She tries to employ people who will fit in with the company and its culture. “It’s not something you can determine from a CV or application” says Joanne, “you can only really assess whether someone will fit into the company when you meet them at interview.”
Best person for the job
Esteem’s two stage interview process gives Joanne and other managers the opportunity to learn more about a candidate’s personality, attitude and motivation. In Neil’s case, Joanne says that his ‘personability’ was a key strength of his interview and this, along with his qualifications and experience made him the best candidate out of the ten people who were interviewed for the job.
Neil was the first employee with Asperger’s Syndrome that Joanne recruited so she researched the condition to learn more about it. She also consulted Neil to find out how he felt the company could best support his needs.
Message to other employers
“We don’t view disability as an issue or a problem. Our priority is to ensure that employees have the right skillset and fit in with the company”.
Joanne Smart. HR Manager
Employee's story
So far, Neil’s job as a Software Developer has met his expectations. His job involves using programming languages to design systems that control computer functions. Neil says that the job suits his personality and his passion for numbers and computers. “I really enjoy working with numbers” says Neil, “and I love seeing the sequences and patterns in them.”
Making the most of talents and skills
Neil makes the most of his talents and skills at work and hasn’t allowed his disability to get in the way of his career. From his own personal experiences, Neil is aware that some employers view people who have long term health conditions as ‘a problem’. However, as far as his employment is concerned, Neil treats his Asperger’s Syndrome as a self-managing condition.
Neil has developed strategies to deal with situations that he finds difficult or uncomfortable. He has also learnt much from the example of his father. “My dad was a good role model” says Neil, “he had Asperger’s Syndrome and Multiple Sclerosis but worked in spite of his disabilities because he always focused on what he could do rather than what he couldn’t do.”
Introduction
Software Developer, Neil Shepherd was shocked to discover he had Asperger’s Syndrome. Up until the age of about 31, he had lived with the condition without even knowing he had it. Asperger’s Syndrome is a form of autism and is often referred to as a hidden disability because it is not easily recognised. It’s also described as a 'spectrum disorder' because it affects people in different ways. According to the National Autistic Society, people with Asperger’s Syndrome have difficulties with social communication, social interaction and social imagination.
However, Neil’s disability has not been a barrier to his career. He is a computer science graduate and has been able to find employment that allows him to make the best use of his qualifications and his talents. “I need to keep busy all the time and I find my work challenging, in a positive way” says Neil who works for Esteem, an IT company.
Employer's story
Although the nature of the professional work at Esteem is highly technical, Human Resources Manager, Joanne Smart, always looks for more than technical skills and qualifications when recruiting new staff. She tries to employ people who will fit in with the company and its culture. “It’s not something you can determine from a CV or application” says Joanne, “you can only really assess whether someone will fit into the company when you meet them at interview.”
Best person for the job
Esteem’s two stage interview process gives Joanne and other managers the opportunity to learn more about a candidate’s personality, attitude and motivation. In Neil’s case, Joanne says that his ‘personability’ was a key strength of his interview and this, along with his qualifications and experience made him the best candidate out of the ten people who were interviewed for the job.
Neil was the first employee with Asperger’s Syndrome that Joanne recruited so she researched the condition to learn more about it. She also consulted Neil to find out how he felt the company could best support his needs.
Message to other employers
“We don’t view disability as an issue or a problem. Our priority is to ensure that employees have the right skillset and fit in with the company”.
Joanne Smart. HR Manager
Employee's story
So far, Neil’s job as a Software Developer has met his expectations. His job involves using programming languages to design systems that control computer functions. Neil says that the job suits his personality and his passion for numbers and computers. “I really enjoy working with numbers” says Neil, “and I love seeing the sequences and patterns in them.”
Making the most of talents and skills
Neil makes the most of his talents and skills at work and hasn’t allowed his disability to get in the way of his career. From his own personal experiences, Neil is aware that some employers view people who have long term health conditions as ‘a problem’. However, as far as his employment is concerned, Neil treats his Asperger’s Syndrome as a self-managing condition.
Neil has developed strategies to deal with situations that he finds difficult or uncomfortable. He has also learnt much from the example of his father. “My dad was a good role model” says Neil, “he had Asperger’s Syndrome and Multiple Sclerosis but worked in spite of his disabilities because he always focused on what he could do rather than what he couldn’t do.”
Monday, May 12, 2008
How 'Second Life' therapy helps Asperger's patients
Have you ever been to Second Life?
It's an online world where people meet, date, conduct business and travel with virtual identities and pseudonyms.
But now, the funky computer pastime has been adopted by a local brain research center for treating autism, with very real results.
Matt Kratz, a brain health center client, brags about himself in a virtual job interview, where he can practice real-world social skills.
He has Asperger's Syndrome, a mild form of autism.
"I'm listening to the conversation, to pick up keys as to what to say and when to say it," he said.
It's part of an innovative new therapy offered at UTD Center for Brain Health, where patients interact with others as digital characters, or avatars, in Second Life - a virtual online world.
"Second Life is kind of this in between stage between what happens to him in real life, but it's beyond a therapy session, where it's kind of just role play," said director of the Center of Brain Health, Sandra Chapman.
The digital character conducting the practice job interview is a clinician in another room who's prepared to ask Kratz some challenging questions.
Asperger's patients typically have normal intelligence but some cognitive flaws involving change or social skills.
In the virtual therapy, Kratz actually trains his brain to adapt and respond.
"Of course, with the brain that's really about making new connections, so synapses or connections between nerve cells are really how behavior changes," said Kratz.
Kratz says the therapy has already helped him in real-life situations.
And the potential for this kind of therapy is broad.
"We're not only asking how's the brain working, but how do we make it work better?" said Chapman.
Training the brain using real-time conversations in a make-believe world.
It's an online world where people meet, date, conduct business and travel with virtual identities and pseudonyms.
But now, the funky computer pastime has been adopted by a local brain research center for treating autism, with very real results.
Matt Kratz, a brain health center client, brags about himself in a virtual job interview, where he can practice real-world social skills.
He has Asperger's Syndrome, a mild form of autism.
"I'm listening to the conversation, to pick up keys as to what to say and when to say it," he said.
It's part of an innovative new therapy offered at UTD Center for Brain Health, where patients interact with others as digital characters, or avatars, in Second Life - a virtual online world.
"Second Life is kind of this in between stage between what happens to him in real life, but it's beyond a therapy session, where it's kind of just role play," said director of the Center of Brain Health, Sandra Chapman.
The digital character conducting the practice job interview is a clinician in another room who's prepared to ask Kratz some challenging questions.
Asperger's patients typically have normal intelligence but some cognitive flaws involving change or social skills.
In the virtual therapy, Kratz actually trains his brain to adapt and respond.
"Of course, with the brain that's really about making new connections, so synapses or connections between nerve cells are really how behavior changes," said Kratz.
Kratz says the therapy has already helped him in real-life situations.
And the potential for this kind of therapy is broad.
"We're not only asking how's the brain working, but how do we make it work better?" said Chapman.
Training the brain using real-time conversations in a make-believe world.
'Second Life' therapy helping Asperger's patients
By JEFF BRADY
WFAA-TV
Have you ever been to Second Life?
It's an online world where people meet, date, conduct business and travel with virtual identities and pseudonyms.
But now, the funky computer pastime has been adopted by a local brain research center for treating autism, with very real results.
Matt Kratz, a brain health center client, brags about himself in a virtual job interview, where he can practice real-world social skills.
He has Asperger's Syndrome, a mild form of autism.
"I'm listening to the conversation, to pick up keys as to what to say and when to say it," he said.
It's part of an innovative new therapy offered at UTD Center for Brain Health, where patients interact with others as digital characters, or avatars, in Second Life - a virtual online world.
"Second Life is kind of this in between stage between what happens to him in real life, but it's beyond a therapy session, where it's kind of just role play," said director of the Center of Brain Health, Sandra Chapman.
The digital character conducting the practice job interview is a clinician in another room who's prepared to ask Kratz some challenging questions.
Asperger's patients typically have normal intelligence but some cognitive flaws involving change or social skills.
In the virtual therapy, Kratz actually trains his brain to adapt and respond.
"Of course, with the brain that's really about making new connections, so synapses or connections between nerve cells are really how behavior changes," said Kratz.
Kratz says the therapy has already helped him in real-life situations.
And the potential for this kind of therapy is broad.
"We're not only asking how's the brain working, but how do we make it work better?" said Chapman.
Training the brain using real-time conversations in a make-believe world.
WFAA-TV
Have you ever been to Second Life?
It's an online world where people meet, date, conduct business and travel with virtual identities and pseudonyms.
But now, the funky computer pastime has been adopted by a local brain research center for treating autism, with very real results.
Matt Kratz, a brain health center client, brags about himself in a virtual job interview, where he can practice real-world social skills.
He has Asperger's Syndrome, a mild form of autism.
"I'm listening to the conversation, to pick up keys as to what to say and when to say it," he said.
It's part of an innovative new therapy offered at UTD Center for Brain Health, where patients interact with others as digital characters, or avatars, in Second Life - a virtual online world.
"Second Life is kind of this in between stage between what happens to him in real life, but it's beyond a therapy session, where it's kind of just role play," said director of the Center of Brain Health, Sandra Chapman.
The digital character conducting the practice job interview is a clinician in another room who's prepared to ask Kratz some challenging questions.
Asperger's patients typically have normal intelligence but some cognitive flaws involving change or social skills.
In the virtual therapy, Kratz actually trains his brain to adapt and respond.
"Of course, with the brain that's really about making new connections, so synapses or connections between nerve cells are really how behavior changes," said Kratz.
Kratz says the therapy has already helped him in real-life situations.
And the potential for this kind of therapy is broad.
"We're not only asking how's the brain working, but how do we make it work better?" said Chapman.
Training the brain using real-time conversations in a make-believe world.
Music critic describes life wth Asperger's syndrome
By REBECCA DELANEY
March 13, 2008 | 4:19 p.m. CST
Pulitzer Prize-winning music critic Tim Page is being brought to MU by the schools of Journalism and Music, the Thompson Center, the Center for Arts and Humanities and MU Extension’s Community Development. A story on page 1A Friday of the Missourian left out three of the sponsoring groups.
COLUMBIA — Tim Page wouldn’t wish Asperger’s syndrome on anyone.
As a kid, he fixated with feverish intensity on details the rest of the world overlooked. He immersed himself in a handful of topics — music, silent films, large chunks of the 1961 Worldbook Encyclopedia — and vigorously absorbed everything he could about them.
In spite of his zest for learning, he struggled through school. Teachers sometimes called him a genius. Then, they’d assign him failing grades.
In his career, Page said he’s angered people with his tendency to offer unfiltered opinions, a product of his perpetual struggle to recognize and decipher social cues. In his personal sphere, forging friendships and relationships has been a lifelong labor. Page has lived much of his life shouldering burdens of confusion, isolation and unhappiness.
“It’s been kind of a lonely life and remains a lonely life,” Page said. “You get the sense that you don’t have the connections with people you’d like to have.”
An estimated four to five out of every 10,000 people have Asperger’s Syndrome, an autism spectrum disorder that hinders social interactions and entails intense fixation on topics that are often offbeat and “are not always productive”, said Janet Farmer, co-director of the Thompson Center for Autism & Neurodevelopmental Disorders at MU.
“You might have a child who gets very interested with sea animals, air conditioners, presidents,” Farmer said. “And they sometimes have negative interactions with other people. In other words, it can be very disabling.”
Page, however, has transformed disability into ability. It’s a real-life twist on making lemonade out of lemons: When life handed Page Asperger’s Syndrome, he forged an illustrious career out of music criticism.
“Would I wish Asperger’s on anybody? No,” said Page, who was diagnosed in 2000. “On the other hand, it seems to me that a lot of things I did and am doing in my life happened because I had Asperger’s.”
At 53, Page has a formidable resume that could incite envy among journalists and music afficianados many years his senior. He will visit MU on Monday and Tuesday, offering a series of lectures and discussions about his disorder, his career and the symbiosis between them. He worked for the Washington Post critiquing classical music starting in 1995. In 1997, he won a Pulitzer Prize in criticism for his work with the Post — work the Pulitzer board called “lucid and illuminating.” He used to be the chief music critic for Newsday, penned stories about music and culture for The New York Times and was the St. Louis Symphony Orchestra’s artistic adviser and creative chair from 1999 to 2001.
Now, Page is a visiting professor with the Annenberg School of Journalism at the University of Southern California.
In 2009, Page will be able to pencil in “autobiographer” on his resume, when he’ll release a memoir detailing his experience with Asperger’s Syndrome. In August 2007, Page wrote a similarly themed piece for The New Yorker called “Parallel Play: A Lifetime of Restless Isolation Explained.”
After reading the article, Sandra Hodge, an associate professor at MU, contacted Page via e-mail to see if he’d be interested in visiting campus, figuring “the worst thing he could say would be no.”
Spearheaded by Hodge, bringing Page to MU was a collaborative effort among the journalism and music schools, the Thompson Center, the Center for Arts and Humanities and University Extension, Community Development. Page’s main appearance will be a University of Missouri Distinguished Lecture Monday evening.
“He’s achieved all these wonderful things in his life,” Hodge said. “I think he’s an inspiration for parents whose children may have the same syndrome. He’s met a number of challenges and has been very successful."
Finding his niche didn’t necessarily take a lot of work. When it came to music, Page said he took to it “like a duck to water.”
“Music was not something I had to learn about from middle C,” Page said. “I knew about it intrinsically from the moment I heard it and needed to learn how to deal with that, how to put that together. There’s no doubt that it had something to do with (Asperger’s) because I was extraordinarily sensitive to music from the time I was two or three. After that, I just inhaled it.”
Paired with a knack for writing, Page’s passion paved a path to success. It’s this kind of success that Farmer said can offer real inspiration to people whose lives are affected by autism spectrum disorders.
“It’s an important message about how you shouldn’t make assumptions about an individual that are negative,” Farmer said. “They may be able to find a perfect match and be very successful in life.”
Professional success aside, Page is straightforward about the obstacles he’s faced on a more personal level, citing two marriages that ended in divorce.
“Would I give up my Pulitzer for a really, really ecstatic and happy marriage?” Page said. “Yeah, I probably would, but maybe I don’t have to choose one or the other.”
Though he’s frank about its challenges, Page said Asperger’s shouldn’t be looked at as “some sort of horrible emotional death sentence.” With three sons and many friends he cherishes, Page maintains a relatively positive outlook on life.
“I’ve had a lot of the blessings that life has,” Page said. “It’s just a little complicated. Everybody’s life has some rain in it.”
March 13, 2008 | 4:19 p.m. CST
Pulitzer Prize-winning music critic Tim Page is being brought to MU by the schools of Journalism and Music, the Thompson Center, the Center for Arts and Humanities and MU Extension’s Community Development. A story on page 1A Friday of the Missourian left out three of the sponsoring groups.
COLUMBIA — Tim Page wouldn’t wish Asperger’s syndrome on anyone.
As a kid, he fixated with feverish intensity on details the rest of the world overlooked. He immersed himself in a handful of topics — music, silent films, large chunks of the 1961 Worldbook Encyclopedia — and vigorously absorbed everything he could about them.
In spite of his zest for learning, he struggled through school. Teachers sometimes called him a genius. Then, they’d assign him failing grades.
In his career, Page said he’s angered people with his tendency to offer unfiltered opinions, a product of his perpetual struggle to recognize and decipher social cues. In his personal sphere, forging friendships and relationships has been a lifelong labor. Page has lived much of his life shouldering burdens of confusion, isolation and unhappiness.
“It’s been kind of a lonely life and remains a lonely life,” Page said. “You get the sense that you don’t have the connections with people you’d like to have.”
An estimated four to five out of every 10,000 people have Asperger’s Syndrome, an autism spectrum disorder that hinders social interactions and entails intense fixation on topics that are often offbeat and “are not always productive”, said Janet Farmer, co-director of the Thompson Center for Autism & Neurodevelopmental Disorders at MU.
“You might have a child who gets very interested with sea animals, air conditioners, presidents,” Farmer said. “And they sometimes have negative interactions with other people. In other words, it can be very disabling.”
Page, however, has transformed disability into ability. It’s a real-life twist on making lemonade out of lemons: When life handed Page Asperger’s Syndrome, he forged an illustrious career out of music criticism.
“Would I wish Asperger’s on anybody? No,” said Page, who was diagnosed in 2000. “On the other hand, it seems to me that a lot of things I did and am doing in my life happened because I had Asperger’s.”
At 53, Page has a formidable resume that could incite envy among journalists and music afficianados many years his senior. He will visit MU on Monday and Tuesday, offering a series of lectures and discussions about his disorder, his career and the symbiosis between them. He worked for the Washington Post critiquing classical music starting in 1995. In 1997, he won a Pulitzer Prize in criticism for his work with the Post — work the Pulitzer board called “lucid and illuminating.” He used to be the chief music critic for Newsday, penned stories about music and culture for The New York Times and was the St. Louis Symphony Orchestra’s artistic adviser and creative chair from 1999 to 2001.
Now, Page is a visiting professor with the Annenberg School of Journalism at the University of Southern California.
In 2009, Page will be able to pencil in “autobiographer” on his resume, when he’ll release a memoir detailing his experience with Asperger’s Syndrome. In August 2007, Page wrote a similarly themed piece for The New Yorker called “Parallel Play: A Lifetime of Restless Isolation Explained.”
After reading the article, Sandra Hodge, an associate professor at MU, contacted Page via e-mail to see if he’d be interested in visiting campus, figuring “the worst thing he could say would be no.”
Spearheaded by Hodge, bringing Page to MU was a collaborative effort among the journalism and music schools, the Thompson Center, the Center for Arts and Humanities and University Extension, Community Development. Page’s main appearance will be a University of Missouri Distinguished Lecture Monday evening.
“He’s achieved all these wonderful things in his life,” Hodge said. “I think he’s an inspiration for parents whose children may have the same syndrome. He’s met a number of challenges and has been very successful."
Finding his niche didn’t necessarily take a lot of work. When it came to music, Page said he took to it “like a duck to water.”
“Music was not something I had to learn about from middle C,” Page said. “I knew about it intrinsically from the moment I heard it and needed to learn how to deal with that, how to put that together. There’s no doubt that it had something to do with (Asperger’s) because I was extraordinarily sensitive to music from the time I was two or three. After that, I just inhaled it.”
Paired with a knack for writing, Page’s passion paved a path to success. It’s this kind of success that Farmer said can offer real inspiration to people whose lives are affected by autism spectrum disorders.
“It’s an important message about how you shouldn’t make assumptions about an individual that are negative,” Farmer said. “They may be able to find a perfect match and be very successful in life.”
Professional success aside, Page is straightforward about the obstacles he’s faced on a more personal level, citing two marriages that ended in divorce.
“Would I give up my Pulitzer for a really, really ecstatic and happy marriage?” Page said. “Yeah, I probably would, but maybe I don’t have to choose one or the other.”
Though he’s frank about its challenges, Page said Asperger’s shouldn’t be looked at as “some sort of horrible emotional death sentence.” With three sons and many friends he cherishes, Page maintains a relatively positive outlook on life.
“I’ve had a lot of the blessings that life has,” Page said. “It’s just a little complicated. Everybody’s life has some rain in it.”
John Schneider promotes Asperger's Syndrome awareness
By John Morgan, Spotlight Health, with medical adviser Stephen A. Shoop, M.D.
On Smallville, John Schneider plays the father of teenager Clark Kent. In real life, Schneider is dad to his 11-year-old son, Chasen, who also has incredible abilities.
"My son has Asperger's Syndrome, which is part of the autism spectrum," says Schneider, who is best known for starring on the Dukes of Hazzard. "It's likely Albert Einstein had Asperger's, and so did Thomas Jefferson. Bill Gates I'm certain has it. With many highly motivated successful people that have done something in an obscure area, you're going to find an 'odd bird' now and then."
"Ask Chasen just about anything about baseball, and he can rattle off names, dates, statistics, you name it," Schneider explains. "He just consumes everything he can about baseball. It's his thing."
Asperger's Syndrome (AS) occupies the higher functioning end of the autism spectrum. Autism is a neurodevelopmental disorder that affects early brain development, often causing communication difficulties and problems with social interactions.
Despite its identification in 1944 by Austrian physician, Hans Asperger, the syndrome was not recognized as a unique disorder until 1994. As such, the exact number afflicted is unknown. But the National Institutes of Health (NIH) estimates that 400,000 people have autism, making it the third most common developmental disability.
But a report by the California Department of Developmental Services estimates that the number with autism may be as high as 1.5 million. The prevalence of the autism is likely as high as 10 to 12 people per 10,000, the study shows.
The challenges faced by people with autism and Asperger's come from the same place," says Stephen Shore, a doctoral candidate in special education, concentrating on the autism spectrum at Boston University. "They just express themselves differently. For example, we see significant delays in communication for autism. There is no significant delay in verbal ability for Asperger's."
Other characteristics of Asperger's include:
* Deficiencies in social skills
* Difficulties with transitions or changes, preference for sameness
* Obsessive routines
* Repetitive motions
* Restricted interests
* Difficulty reading nonverbal cues (body language)
* Sensory issues
* Difficulty determining proper body space boundaries
By definition, people with AS have a normal to above average IQs. But while many Asperger's kids possess advanced vocabularies – often sounding like "little professors" — they can be extremely literal and have difficulty using language in a social context.
'Autism bomb'
"Chasen was formally diagnosed a couple of years ago with what they termed a form of autism," Schneider says. "Then it was refined to Asperger's. When I was a kid, we called it the 'hyperactive kid in class' – you know, the one who was the brain and had little or no social skills whatsoever. Everyone seems to need a label. My son I guess could be considered an 'odd bird.'"
So was Shore, the doctoral student.
"I was hit with what I call the 'autism bomb' and lost language skills but then started getting it back at 4 years of age," Shore says. "In 1964 I was diagnosed with strong autistic tendencies. If I were to have been diagnosed at age 12, it would have been Asperger's."
"So what happened with me is what happens with most people on the autism spectrum — I moved from a more severe end to a lighter end," Shore adds. "The challenge is to move children as far to the lighter end as possible."
The cause of autism and Asperger's remains a mystery.
"We think there's a genetic basis that is exacerbated by something in the environment," Shore says. "The question is – is the catalyst a vaccination, a virus, or something else?"
'But what we do know there is definitely something in the environment that is causing it," Shore states. "Thimerisol is being strongly scrutinized, perhaps in part due to the overlap in symptomology between mercury poisoning and autism being about 80-90%. But we're not sure."
Autism expert Bernard Rimland says he is sure.
"I've been studying this for over 40 years," says Rimland, who founded the Autism Society of America and now serves as its director. "In my opinion there is very little doubt that the increased rate of vaccinations is responsible for the increase in autism. Not only the number of vaccines but also the amount of mercury has increased. Mercury is extraordinarily toxic in small amounts, but some people are amazingly susceptible to minute amounts of mercury."
"There is a huge epidemic of autism," says Rimland, who consulted on the movie Rain Man. "A recent report examined the hypotheses as to why there is such a large increase. Migration to California does not explain the increase. The report rejected the hypothesis that there was a change in diagnostic standards. Another theory was kids were reclassified from mentally retarded to autistic. But this was not the case either. It is the vaccinations."
To support his case, Rimland says that the symptoms of mercury poisoning are "amazingly like the symptoms of autism." Boys are four times more susceptible to mercury toxicity than girls. Autism is four times as common in boys as girls.
Mercury rising
When interviewed by the ASA, Rick Rollens, who has helped with the California studies, acknowledged the possibility exists that vaccinations could be responsible. "…Since mercury containing vaccines are still in use today, including the most recent recommended addition to the childhood immunization schedule ... (of) two shots of flu vaccine for babies, it will take a few years to start seeing the effect of the phasing out of the mercury containing preservative thimerisol from childhood vaccines on the autism epidemic."
"The experts have been wrong before and the experts are wrong this time too," Rimland states. "When we were children we had three vaccinations before the age of 6. Now the kids get 22 before the age of 2. It's a little like saying if a kid can safely carry three books in his backpack, then 22 is also safe."
"The good thing from all this is they've taken the mercury out of the vaccines," adds Shore, who authored Beyond the Wall: Personal Experiences with Autism and Asperger's Syndrome. "Because you shouldn't be injecting mercury into anyone."
But Rimland urges extra caution because many old vaccinations are still being used that still contain mercury.
"The FDA has not recalled the vaccinations so the advice we give parents is if you have an autistic child in your family insist on seeing the package insert – don't take their word for it," Rimland cautions. "Read it yourself. If it says thimerisol, don't let them use it."
Schneider has his own advice.
"If your child is going along just fine and developing skills when they should and then you notice all of the sudden that his forward progression stops and begins to reverse, you need to take your child in and find out what is going on," Schneider says.
Among the treatments that can help children with autism and Asperger's:
* Behavior modification
* Special education
* Medications – though not specifically for Asperger's, anti-anxiety drugs and selective serotonin reuptake inhibitors can be helpful for symptoms.
Schneider says his son has benefited greatly from social skills training as well as having used a "shadow" in school to encourage him to interact more with his peers.
"Fortunately, Asperger's is not like some of the terrible diseases we are fighting to cure through the Children's Miracle Network. It's not going to kill Chasen," says Schneider, who helped found CMN which has raised more than $ 2.5 billion for children's hospitals. "It doesn't mean it's easy for Chasen, but he's an amazing kid, and I am so proud of him."
On Smallville, John Schneider plays the father of teenager Clark Kent. In real life, Schneider is dad to his 11-year-old son, Chasen, who also has incredible abilities.
"My son has Asperger's Syndrome, which is part of the autism spectrum," says Schneider, who is best known for starring on the Dukes of Hazzard. "It's likely Albert Einstein had Asperger's, and so did Thomas Jefferson. Bill Gates I'm certain has it. With many highly motivated successful people that have done something in an obscure area, you're going to find an 'odd bird' now and then."
"Ask Chasen just about anything about baseball, and he can rattle off names, dates, statistics, you name it," Schneider explains. "He just consumes everything he can about baseball. It's his thing."
Asperger's Syndrome (AS) occupies the higher functioning end of the autism spectrum. Autism is a neurodevelopmental disorder that affects early brain development, often causing communication difficulties and problems with social interactions.
Despite its identification in 1944 by Austrian physician, Hans Asperger, the syndrome was not recognized as a unique disorder until 1994. As such, the exact number afflicted is unknown. But the National Institutes of Health (NIH) estimates that 400,000 people have autism, making it the third most common developmental disability.
But a report by the California Department of Developmental Services estimates that the number with autism may be as high as 1.5 million. The prevalence of the autism is likely as high as 10 to 12 people per 10,000, the study shows.
The challenges faced by people with autism and Asperger's come from the same place," says Stephen Shore, a doctoral candidate in special education, concentrating on the autism spectrum at Boston University. "They just express themselves differently. For example, we see significant delays in communication for autism. There is no significant delay in verbal ability for Asperger's."
Other characteristics of Asperger's include:
* Deficiencies in social skills
* Difficulties with transitions or changes, preference for sameness
* Obsessive routines
* Repetitive motions
* Restricted interests
* Difficulty reading nonverbal cues (body language)
* Sensory issues
* Difficulty determining proper body space boundaries
By definition, people with AS have a normal to above average IQs. But while many Asperger's kids possess advanced vocabularies – often sounding like "little professors" — they can be extremely literal and have difficulty using language in a social context.
'Autism bomb'
"Chasen was formally diagnosed a couple of years ago with what they termed a form of autism," Schneider says. "Then it was refined to Asperger's. When I was a kid, we called it the 'hyperactive kid in class' – you know, the one who was the brain and had little or no social skills whatsoever. Everyone seems to need a label. My son I guess could be considered an 'odd bird.'"
So was Shore, the doctoral student.
"I was hit with what I call the 'autism bomb' and lost language skills but then started getting it back at 4 years of age," Shore says. "In 1964 I was diagnosed with strong autistic tendencies. If I were to have been diagnosed at age 12, it would have been Asperger's."
"So what happened with me is what happens with most people on the autism spectrum — I moved from a more severe end to a lighter end," Shore adds. "The challenge is to move children as far to the lighter end as possible."
The cause of autism and Asperger's remains a mystery.
"We think there's a genetic basis that is exacerbated by something in the environment," Shore says. "The question is – is the catalyst a vaccination, a virus, or something else?"
'But what we do know there is definitely something in the environment that is causing it," Shore states. "Thimerisol is being strongly scrutinized, perhaps in part due to the overlap in symptomology between mercury poisoning and autism being about 80-90%. But we're not sure."
Autism expert Bernard Rimland says he is sure.
"I've been studying this for over 40 years," says Rimland, who founded the Autism Society of America and now serves as its director. "In my opinion there is very little doubt that the increased rate of vaccinations is responsible for the increase in autism. Not only the number of vaccines but also the amount of mercury has increased. Mercury is extraordinarily toxic in small amounts, but some people are amazingly susceptible to minute amounts of mercury."
"There is a huge epidemic of autism," says Rimland, who consulted on the movie Rain Man. "A recent report examined the hypotheses as to why there is such a large increase. Migration to California does not explain the increase. The report rejected the hypothesis that there was a change in diagnostic standards. Another theory was kids were reclassified from mentally retarded to autistic. But this was not the case either. It is the vaccinations."
To support his case, Rimland says that the symptoms of mercury poisoning are "amazingly like the symptoms of autism." Boys are four times more susceptible to mercury toxicity than girls. Autism is four times as common in boys as girls.
Mercury rising
When interviewed by the ASA, Rick Rollens, who has helped with the California studies, acknowledged the possibility exists that vaccinations could be responsible. "…Since mercury containing vaccines are still in use today, including the most recent recommended addition to the childhood immunization schedule ... (of) two shots of flu vaccine for babies, it will take a few years to start seeing the effect of the phasing out of the mercury containing preservative thimerisol from childhood vaccines on the autism epidemic."
"The experts have been wrong before and the experts are wrong this time too," Rimland states. "When we were children we had three vaccinations before the age of 6. Now the kids get 22 before the age of 2. It's a little like saying if a kid can safely carry three books in his backpack, then 22 is also safe."
"The good thing from all this is they've taken the mercury out of the vaccines," adds Shore, who authored Beyond the Wall: Personal Experiences with Autism and Asperger's Syndrome. "Because you shouldn't be injecting mercury into anyone."
But Rimland urges extra caution because many old vaccinations are still being used that still contain mercury.
"The FDA has not recalled the vaccinations so the advice we give parents is if you have an autistic child in your family insist on seeing the package insert – don't take their word for it," Rimland cautions. "Read it yourself. If it says thimerisol, don't let them use it."
Schneider has his own advice.
"If your child is going along just fine and developing skills when they should and then you notice all of the sudden that his forward progression stops and begins to reverse, you need to take your child in and find out what is going on," Schneider says.
Among the treatments that can help children with autism and Asperger's:
* Behavior modification
* Special education
* Medications – though not specifically for Asperger's, anti-anxiety drugs and selective serotonin reuptake inhibitors can be helpful for symptoms.
Schneider says his son has benefited greatly from social skills training as well as having used a "shadow" in school to encourage him to interact more with his peers.
"Fortunately, Asperger's is not like some of the terrible diseases we are fighting to cure through the Children's Miracle Network. It's not going to kill Chasen," says Schneider, who helped found CMN which has raised more than $ 2.5 billion for children's hospitals. "It doesn't mean it's easy for Chasen, but he's an amazing kid, and I am so proud of him."
Sunday, May 11, 2008
iReport: 'Naughty Auties' battle autism with virtual interaction
By Nicole Saidi
CNN
(CNN) -- Walk into Naughty Auties, a virtual resource center for those with autism, and you'll find palm trees swaying against a striking ocean sunset. Were it not for the pixelated graphics on the computer screen in front of you, you would swear you were looking at a tropical hideaway.
David Savill, 22, lives in Gloucester, England, in real life and created this spot within the virtual world of Second Life. Residents of this digital realm can represent themselves with 3-D images called avatars and connect with each other over the Internet.
Savill has Asperger's syndrome and said he wanted Naughty Auties to serve those with autism spectrum disorders and their friends and family.
Savill, who represents himself in the virtual world using an avatar named Dave Sparrow, said one benefit is that visitors can practice social interaction and find information about the condition. The graphical representations of real people create a "comfort zone" that can coax users out of their shells and get them communicating with others, he said.
"You're on your own computer, in your own room,your own space," Savill said.
"So you're not going out into the real world meeting people, you're going meeting people online and in your own home, so you're perfectly relaxed. It's just a fantastic tool to use to bring people together."
Autism, more precisely the autism spectrum, is a range of brain disorders that can cause difficulties in social interaction, communication and behavior. Asperger's syndrome is at the milder end of this spectrum. People with Asperger's are often high-achieving but can have difficulty in social situations.
CNN learned about Savill's Second Life place from an iReporter in England who has named herself Janey Bracken in Second Life. Bracken, who prefers not to share her real name, submitted stories to iReport.com describing Savill's resource center and providing information about other places where those with the condition can turn.
"[Savill] said that his life changed when his family decided to get the Internet," Bracken wrote. "He was able to use chat rooms and soon realized that people used symbols to express themselves: the smiley signs, the angry signs, hug signs, etc., to enhance the text. He went on to say that subconsciously his brain was learning about communication from these sessions of chat."
Second Life has its own economy and social scene, and Bracken and Savill hope it could become a haven for those seeking help for autism.
While many think such computer interactions could eventually be helpful in treating autism, scientists say more information is needed to truly assess their value. Dr. Fred Volkmar, a professor in Yale University's Child Study Center, said he would want more concrete studies done before he could be sure.
"Although not much research is yet available, there is clearly considerable potential in use of new technologies for fostering social skills," Volkmar said.
To answer this need, scientists are beginning to explore the possibilities in Second Life. One such researcher is Simon Bignell, a lecturer in psychology at the University of Derby in Derby, England, who is running a project that is evaluating teaching and research in Second Life.
Bignell, known in-world as Milton Broome, said Second Life is an uncharted but promising area for new applied psychological research. Virtual reality can be used to simulate new environments for people on the autistic spectrum, he said.
"For people with autism, we've found it's a very nice way of setting up situations they might come across in their everyday lives," Bignell said. "For people who have social, emotional, communicational problems ... we can get them familiar with an environment before they actually try it out in real life."
He started the "Autism Research" discussion group within Second Life to serve as an information-sharing tool for interested parties. He also has an office within Second Life and can sometimes be found working in SL-Labs, the university's in-world psychology lab space. The lab areas contain meeting spots, informational kiosks and games. A portion of these areas contain information about autism and Asperger's.
Savill said Second Life excels at minimizing geographical separations between people and bringing people from all over the world to meet together quickly and easily.
He added that he wanted to emphasize that virtual worlds are an emerging and important tool not just for autistic people, but for the people who know them.
"It's not just to help people with autism, it's to help people whose lives have been affected by autism, be they family or friends or employees of people who have autism," Savill said. "Naughty Auties is a fantastic meeting place for people."
CNN
(CNN) -- Walk into Naughty Auties, a virtual resource center for those with autism, and you'll find palm trees swaying against a striking ocean sunset. Were it not for the pixelated graphics on the computer screen in front of you, you would swear you were looking at a tropical hideaway.
David Savill, 22, lives in Gloucester, England, in real life and created this spot within the virtual world of Second Life. Residents of this digital realm can represent themselves with 3-D images called avatars and connect with each other over the Internet.
Savill has Asperger's syndrome and said he wanted Naughty Auties to serve those with autism spectrum disorders and their friends and family.
Savill, who represents himself in the virtual world using an avatar named Dave Sparrow, said one benefit is that visitors can practice social interaction and find information about the condition. The graphical representations of real people create a "comfort zone" that can coax users out of their shells and get them communicating with others, he said.
"You're on your own computer, in your own room,your own space," Savill said.
"So you're not going out into the real world meeting people, you're going meeting people online and in your own home, so you're perfectly relaxed. It's just a fantastic tool to use to bring people together."
Autism, more precisely the autism spectrum, is a range of brain disorders that can cause difficulties in social interaction, communication and behavior. Asperger's syndrome is at the milder end of this spectrum. People with Asperger's are often high-achieving but can have difficulty in social situations.
CNN learned about Savill's Second Life place from an iReporter in England who has named herself Janey Bracken in Second Life. Bracken, who prefers not to share her real name, submitted stories to iReport.com describing Savill's resource center and providing information about other places where those with the condition can turn.
"[Savill] said that his life changed when his family decided to get the Internet," Bracken wrote. "He was able to use chat rooms and soon realized that people used symbols to express themselves: the smiley signs, the angry signs, hug signs, etc., to enhance the text. He went on to say that subconsciously his brain was learning about communication from these sessions of chat."
Second Life has its own economy and social scene, and Bracken and Savill hope it could become a haven for those seeking help for autism.
While many think such computer interactions could eventually be helpful in treating autism, scientists say more information is needed to truly assess their value. Dr. Fred Volkmar, a professor in Yale University's Child Study Center, said he would want more concrete studies done before he could be sure.
"Although not much research is yet available, there is clearly considerable potential in use of new technologies for fostering social skills," Volkmar said.
To answer this need, scientists are beginning to explore the possibilities in Second Life. One such researcher is Simon Bignell, a lecturer in psychology at the University of Derby in Derby, England, who is running a project that is evaluating teaching and research in Second Life.
Bignell, known in-world as Milton Broome, said Second Life is an uncharted but promising area for new applied psychological research. Virtual reality can be used to simulate new environments for people on the autistic spectrum, he said.
"For people with autism, we've found it's a very nice way of setting up situations they might come across in their everyday lives," Bignell said. "For people who have social, emotional, communicational problems ... we can get them familiar with an environment before they actually try it out in real life."
He started the "Autism Research" discussion group within Second Life to serve as an information-sharing tool for interested parties. He also has an office within Second Life and can sometimes be found working in SL-Labs, the university's in-world psychology lab space. The lab areas contain meeting spots, informational kiosks and games. A portion of these areas contain information about autism and Asperger's.
Savill said Second Life excels at minimizing geographical separations between people and bringing people from all over the world to meet together quickly and easily.
He added that he wanted to emphasize that virtual worlds are an emerging and important tool not just for autistic people, but for the people who know them.
"It's not just to help people with autism, it's to help people whose lives have been affected by autism, be they family or friends or employees of people who have autism," Savill said. "Naughty Auties is a fantastic meeting place for people."
Saturday, May 10, 2008
Autistic boy creates art with paper and scissors
NANCY BARTLEY
The Seattle Times
SEATTLE — In Wil Kerner's world, happiness and grief and all the feelings that come between are puzzle pieces as alien as the curious construction-paper characters in the art he assembles on his grandmother's living-room carpet.
What the autistic 12-year-old can't express verbally or in social interaction he can show through his carefully cut out geometric shapes assembled into characters in a paper collage, a talent the staff at Seattle's Harborview Medical Center calls a rare artistic gift. Large red circles become heads, delicate strips of fringed white paper become hair, and finely cut arches are shaped into eyebrows.
The art and the artist intrigues those who study autism. Dr. Stephen Dager, interim director of the University of Washington's Autism Center, who has been studying brain anatomy and chemistry in autism, is mystified by Wil's artistic talents. Autistic people generally pay little attention to eyes during social interaction, studies show, and usually are unaware of others' emotions. Yet, Wil has the ability to mimic human emotion through his art.
Wil doesn't understand numbers, has limited speech ability and very limited social skills. He has a brief attention span, tends to be compulsive and doesn't like his routine interrupted, and while he seems oblivious to others' subtle facial expressions, he manages not only to reproduce them but to do so by cutting them out of paper.
Those who study autism wonder if Wil's remarkable gift is a means of compensation for other deficits or a matter of serendipity.
In the past, Wil would have been called a "savant," a term now considered insensitive. Dager calls him extraordinarily talented.
Last week, Wil was honored at a reception in the Harborview cafeteria, where his art is on display through the month. He fidgeted at a table in the corner with a pile of colored paper in front of him, as dozens of people milled through the exhibit, challenging Wil's need for a calm environment.
Guest of honor or not, he finally had enough and shouted. He left for a quiet place as guests continued to admire his work.
The hospital has an art program and features artists year-round. When art director Peggy Weise saw Wil's work, she was intrigued.
"It's full of symbolism. Once you spend time with it, it's actually quite sophisticated. You can appreciate it first on the cursory level, and then you can appreciate its more sophisticated qualities," Weise said.
Wil, who was diagnosed with autism when he was 2, went to special classes in the Issaquah School District until two years ago but failed to thrive and began having panic attacks, said his grandmother, Susan Mooring. He was allowed to be tutored privately at Mooring's home just outside Renton.
With the help of his teacher, Leroy Maxwell, Wil, at 10, slowly began to learn to speak, something he seldom had done, and to read.
Then one day his father took him to a warehouse store and granted his wish for colorful construction paper, letting him buy an entire cartload. Wil's first collages circle-headed people with one eye each, a boy and girl holding hands, a blue baby with a shy smile, began to take shape. Mooring glanced at what he was doing and was stunned.
"There was really something going on there," she said of her grandson's art.
Although she had no formal art training, she believed Wil's creations were more than haphazard assemblages. To capture a design before Wil could destroy it, Mooring photographed each one and collected all the pieces. Later, she reassembled each collage on a large piece of artboard and hired a photographer to take digital photographs. Now hundreds of collages later, they're selling sometimes for as much as $1,000 each in the case of three sold at a charity auction to benefit autism.
One collage, of a pig with a downcast look and raised shoulder, gives a strong sense of isolation and sadness, Mooring said. While Wil names most of his work simply "Blue Baby" and "Pals," for instance Mooring named the pig collage "Exclusion." It was something Wil experienced, she said.
Another one of his creations is a collage of rectangles with a large figure, vaguely resembling Donald Trump, seemingly overlooking buildings. "He calls this one 'Rat,'" Mooring said.
That he can create facial expressions so well is particularly amazing, Dager said, because autistic people tend not to maintain eye contact or study facial expressions.
"Is it that their brains are wired differently? That's part of what we're studying," Dager said.
As for Wil, time for his art is a reward for doing schoolwork, Maxwell said. And when Wil begins to cut, the paper flies, the shapes emerge, the floor is littered with scraps of color and Maxwell and Mooring wait and watch for the magic.
The Seattle Times
SEATTLE — In Wil Kerner's world, happiness and grief and all the feelings that come between are puzzle pieces as alien as the curious construction-paper characters in the art he assembles on his grandmother's living-room carpet.
What the autistic 12-year-old can't express verbally or in social interaction he can show through his carefully cut out geometric shapes assembled into characters in a paper collage, a talent the staff at Seattle's Harborview Medical Center calls a rare artistic gift. Large red circles become heads, delicate strips of fringed white paper become hair, and finely cut arches are shaped into eyebrows.
The art and the artist intrigues those who study autism. Dr. Stephen Dager, interim director of the University of Washington's Autism Center, who has been studying brain anatomy and chemistry in autism, is mystified by Wil's artistic talents. Autistic people generally pay little attention to eyes during social interaction, studies show, and usually are unaware of others' emotions. Yet, Wil has the ability to mimic human emotion through his art.
Wil doesn't understand numbers, has limited speech ability and very limited social skills. He has a brief attention span, tends to be compulsive and doesn't like his routine interrupted, and while he seems oblivious to others' subtle facial expressions, he manages not only to reproduce them but to do so by cutting them out of paper.
Those who study autism wonder if Wil's remarkable gift is a means of compensation for other deficits or a matter of serendipity.
In the past, Wil would have been called a "savant," a term now considered insensitive. Dager calls him extraordinarily talented.
Last week, Wil was honored at a reception in the Harborview cafeteria, where his art is on display through the month. He fidgeted at a table in the corner with a pile of colored paper in front of him, as dozens of people milled through the exhibit, challenging Wil's need for a calm environment.
Guest of honor or not, he finally had enough and shouted. He left for a quiet place as guests continued to admire his work.
The hospital has an art program and features artists year-round. When art director Peggy Weise saw Wil's work, she was intrigued.
"It's full of symbolism. Once you spend time with it, it's actually quite sophisticated. You can appreciate it first on the cursory level, and then you can appreciate its more sophisticated qualities," Weise said.
Wil, who was diagnosed with autism when he was 2, went to special classes in the Issaquah School District until two years ago but failed to thrive and began having panic attacks, said his grandmother, Susan Mooring. He was allowed to be tutored privately at Mooring's home just outside Renton.
With the help of his teacher, Leroy Maxwell, Wil, at 10, slowly began to learn to speak, something he seldom had done, and to read.
Then one day his father took him to a warehouse store and granted his wish for colorful construction paper, letting him buy an entire cartload. Wil's first collages circle-headed people with one eye each, a boy and girl holding hands, a blue baby with a shy smile, began to take shape. Mooring glanced at what he was doing and was stunned.
"There was really something going on there," she said of her grandson's art.
Although she had no formal art training, she believed Wil's creations were more than haphazard assemblages. To capture a design before Wil could destroy it, Mooring photographed each one and collected all the pieces. Later, she reassembled each collage on a large piece of artboard and hired a photographer to take digital photographs. Now hundreds of collages later, they're selling sometimes for as much as $1,000 each in the case of three sold at a charity auction to benefit autism.
One collage, of a pig with a downcast look and raised shoulder, gives a strong sense of isolation and sadness, Mooring said. While Wil names most of his work simply "Blue Baby" and "Pals," for instance Mooring named the pig collage "Exclusion." It was something Wil experienced, she said.
Another one of his creations is a collage of rectangles with a large figure, vaguely resembling Donald Trump, seemingly overlooking buildings. "He calls this one 'Rat,'" Mooring said.
That he can create facial expressions so well is particularly amazing, Dager said, because autistic people tend not to maintain eye contact or study facial expressions.
"Is it that their brains are wired differently? That's part of what we're studying," Dager said.
As for Wil, time for his art is a reward for doing schoolwork, Maxwell said. And when Wil begins to cut, the paper flies, the shapes emerge, the floor is littered with scraps of color and Maxwell and Mooring wait and watch for the magic.
Monday, May 5, 2008
My Mind is a Web Browser: How People with Autism Think
by Temple Grandin
The struggle that made possible Temple Grandin's early development, graduate education, and notable career as a professor of animal behavior, designer of animal facilities worldwide, and celebrated writer, speaker, and researcher on autism, is told in her books, Emergence: Labeled Autistic (1986) and Thinking in Pictures and Other Reports From My Life With Autism* (Vintage Books) 1996.
*Voted a Cerebrum "Great Brain Book," Spring 1999.
Since writing Thinking in Pictures, which described my visual way of thinking, I have gained further insights into how my thought processes are different when compared to those of people who think in language. At autism meetings, I am often asked, "How can you be effective at public speaking when you think in pictures that are like video tapes in your imagination?" It is almost as though I have two levels of consciousness that operate separately. Only by interviewing people did I learn that many of them think primarily in words, and that their thoughts are linked to emotion. In my brain, words act as a narrator for the visual images in my imagination. I can see the pictures in my memory files.
To use a computer analogy: The language part of my brain is the computer operator, and the rest of my brain is the computer. In most people, the brain's computer operator and the computer are merged into one seamless consciousness; but in me they are separate. I hypothesize that the frontal cortex of my brain is the operator and the rest of my brain is the computer.
When I lecture, the language itself is mostly "downloaded" out of memory from files that are like tape recordings. I use slides or notes to trigger opening the different files. When I am talking about something for the first time, I look at the visual images on the "computer monitor" in my imagination, then the language part of me describes those images. After I have given the lecture several times, the new material in language is switched over into "audio tape-recording files." When I was in high school, other kids called me "tape recorder."
A Web browser finds specific words; by analogy, my mind looks for picture memories that are associated with a word. It can also go off on a tangent in the same way as a Web browser.
Non-autistic people seem to have a whole upper layer of verbal thinking that is merged with their emotions. By contrast, unless I panic, I use logic to make all decisions; my thinking can be done independently of emotion. In fact, I seem to lack a higher consciousness composed of abstract verbal thoughts that are merged with emotion. Researchers have learned that people with autism have a decreased metabolism in the area in the frontal cortex that connects the brain's emotional centers with higher thinking (the anterior cingulate).1 The frontal cortex is the brain's senior executive like the CEO of a corporation. Brain scans indicate that people with autism use problem-solving circuits in social situations. Unlike non-autistic people, the emotion center in their amygdala is not activated, for example, when they judge expressions in another person's eyes.
My mind is a Web browser
Now let me explain how the language part of my brain and the "thinking in pictures" part of my brain seem to interact. My mind works just like an Internet Web browser. A Web browser finds specific words; by analogy, my mind looks for picture memories that are associated with a word. It can also go off on a tangent in the same way as a Web browser, because visual thinking is non-linear, associative thinking.
To demonstrate how my mind works, at an autism meeting I asked a member of the audience to name a thing for me to invent. I wanted to show how the visual part of my brain and the language part worked separately. Somebody said, "invent a better paper clip." The language part of my brain said, "I can do that," and pictures immediately started flashing into my imagination of all kinds of paper clips I have seen. My "Web browser" searched the picture memory files; many paper clip pictures flashed through my imagination like slides. I could stop on any one picture and study it. I saw an odd, plastic paper clip that was on a scientific paper from Europe. At this point, I got off the subject and saw pictures of the first scientific meeting I had attended in Spain. The language voice inside me said, "Get back on the subject of paper clips." The language part of me is a manager who uses simple non-descriptive language to tell the rest of my brain what to do.
Often, the best ideas for inventing things come just as I am drifting off to sleep. The pictures are clearer then. It is as though I can access the most concrete, vivid memory files with the most detailed images. The language part of my brain is completely shut off at night.
To get ideas for new paper clip designs, I can pull up pictures of clothes pins and other clip-like things, such as mouse traps and C clamps used in woodworking. I start thinking that inventing a better clip for holding a thick pile of papers together might be more marketable than a new paper clip design. Existing spring binder clips tend to rip envelopes when papers are mailed, because the clips have protruding edges. When I think about this, I see ripped envelopes. The language part of my mind says, "Design a flat binder clip for thick documents." When I say this, I see a mailed document in an undamaged envelope. My visual imagination then sees a large plastic clip that I saw in Japan. Japanese apartment dwellers who do not have clothes dryers use large, plastic clips to hold blankets and other laundry on balcony railings. A small version of the Japanese balcony clip may make a better paper clip for holding many pages.
When I was responding to the paper clip inquiry, I knew that I could visually associate all day about paper clips. The language part of my mind then said, "That is enough," and I resumed my lecture. But as I corrected the first draft of this article, I saw a one-piece molded plastic binder clip that would lay flat on a thick bunch of papers.
I do have the ability to control the rate at which pictures come onto the "computer screen" in my imagination. Some people with autism are not able to do this. One person with autism told me that images explode into a web of a pictures that are interrelated. The decision-making process can become "locked up" and over-loaded with pictures coming in all at once.
Unmasking Talent
I have been fascinated with research indicating that the detailed, realistic pictures that autistic savants -- autistic individuals with extraordinary talent in a specific area -- make may be created by directly accessing primary memory areas deep in the brain. Researchers in Australia hypothesize that autistic savants may have privileged access to lower levels of information.3 A study with a non-autistic "human calculator," who could solve multiplication problems twice as quickly as a normal person, indicated that his brain had enhanced low-level processing.4 EEG recordings of his brain waves showed that brain activity was greatest, as compared with a normal person, when the multiplication problem was first flashed on the screen.
I hypothesize that I am able to access primary visual files in my brain. When designing livestock equipment in my business, I can do three-dimensional, full motion videos of equipment and can test-run the equipment in my imagination. I can walk around it or fly over it. My ability to rotate the image is slow. I move my mind's eye around or over the image.
When I read an article in Neurology about frontal temporal lobe dementia, I became extremely excited. It provided a scientific foundation for the idea of hidden visual thinking under a layer of verbal thinking. Research on frontal temporal lobe dementia, an Alzheimer's-like condition that destroys language and social areas in the brain, demonstrated that, as the condition progressed, visual skills in art emerged in people who had no interest in art. The increase in creativity was always visual, never verbal. Brain scans found the highest activity in the visual cortex. As the patient's cognitive abilities deteriorated, the art became more photo realistic. Artwork published with the journal article looks like the art of autistic savants.
I see the decision process
I see the decision-making process in my mind in a way most people do not. When I tried to explain this to a person who thinks in language, he just didn't get it. How my decision-making works is most clearly seen in an emergency.
On a bright, sunny day, I was driving to the airport when an elk ran into the highway just ahead of my car. I had only three or four seconds to react. During those few seconds, I saw images of my choices. The first image was of a car rear ending me. This is what would have happened if I had made the instinctive panic response and slammed on the brakes. The second image was of an elk smashing through my windshield. This is what would have happened if I had swerved. The last image showed the elk passing by in front of my car. The last choice was the one I could make if I inhibited the panic response and braked just a little to slow the car. I mentally "clicked" on slowing down and avoided an accident. It was like clicking a computer mouse on the desired picture.
Animal decision making
I speculate that the decision-making process I used to avoid the accident may be similar to the process animals use. From my work with animals, I've come to believe that consciousness originally arose from the orienting response. When a deer sees a person, it will often freeze and look at him. This is the deer's orienting response. During this time, it decides either to run away or to keep grazing. It does not act as a programmed robot, governed by instinct or reflexes; it has the flexibility to make a decision. One of the things that has helped me to understand animals is that, more than most people, I think and feel like one. The more "animal" parts of the normal human brain may be covered by layers of language-based thinking.
Thinking in audio tapes
In connection with my lectures, I have talked with autistic people who are not visual thinkers. They seem to think in audio tape clips. Audio tape thinking does not have to involve language; instead of using visual images to form memories, these people store very specific audio clips. I suspect that, for them, hearing is easier than seeing. Dr. John Stein and his colleagues at Oxford University have discovered that some people have difficulty seeing rapidly changing visual scenes. They find reading is difficult because the print appears jumbled.6 This results from defects in brain circuits that process motion.7 The eye is fine; the circuits between brain and eyes malfunction.
One person I know who is expert at training animals told me that she hears the animal's behavior instead of seeing it. She has audio tapes in her memory with little sound details. For example, she knows that the animal is relaxed or agitated by listening to its breathing or footsteps. She reads audio signals instead of body posture.
Piecing the details together
People with autism, and animals as well, pay more attention to details. As I described in Thinking in Pictures, all my thinking goes from the specific to the general. I look at lots of little details and piece them together to make a concept. The first step in forming an idea is to make categories. For example, the most primary level is sorting objects by color or shape. The next step is sorting things by less obvious features, as when we categorize cats and dogs. When I was five years old, I figured out that a miniature dachshund was not a cat because it had a dog's nose; all dogs had certain features that were visually recognizable.
My mind seeks these categories amidst an array of little details. In problem solving, my thinking process is like that of an epidemiologist tracking down a disease. The epidemiologist collects lots of little pieces of information and finally figures out the common factor that caused certain people to fall ill. For example, they may all have eaten strawberries from a certain place.
Also, I understand concepts visually. For example, all objects classified as keys will open locks. I realize that the word "key" can also be used metaphorically, when we say, "the key to success is positive thinking." When I think about that phrase, I see Norman Vincent Peale's book, The Power of Positive Thinking, and I see myself back at my aunt's ranch reading it. I then see a stage where a person is getting an award and I see a large cardboard key. Even in this situation, the key still unlocks the door to success. The ability to form categories is the beginning of the ability to form concepts. Keys in their physical form open physical locks but abstract keys can open many things, such as a scientific discovery or career success.
In teaching people to understand animal behavior, I have to help them to learn how to observe details that seem insignificant. Animals notice details in their environment that most people do not see, such as a branch that moves slightly or a shadow. In my work with livestock facilities, I try to get the language-based thinkers of the crowd to be more observant of little details that spook cattle. A cow may balk at entering a vaccination chute because it sees a piece of jiggling chain that most people ignore, but which is significant in the cow's environment.
That little chain attracts the cow's attention because it moves quickly. Rapid movement activates the amygdala, the brain's emotion center. In a prey species such as cattle, rapid movement elevates fear because, in the wild, things that move rapidly are often dangerous. Something moving quickly in the bushes may be a lion. On the other hand, a predatory animal such as a dog, is attracted to rapid movement. This may explain why some dogs attack joggers. Rapid movement triggers chasing and attacking in a predatory animal, but it triggers flight in a prey species such as deer or cattle.
Objects that move rapidly also attract the attention of people with autism. When I was younger, I liked to play with automatic doors at supermarkets. I enjoyed watching the rapid opening movement. Elevator doors were not interesting; they did not move fast enough to be pleasurable to watch. Tests of my visual tracking indicate that I have a slight abnormality in my eye's ability to track a moving object. Children and adults with autism who never learn to speak have graver defects in their nervous system. The automatic doors that I liked to watch cause many nonverbal autistics to put their hands over their eyes. The rapid movement of the doors hurts their eyes. Possibly, a small defect in eye tracking makes rapidly moving things attractive to me, while a more serious neurological defect makes them unpleasant to other autistics. As a child, my favorite things all made rapid movements. I liked flapping flags, kites, and model airplanes that flew.
Disturbing sounds
I have always felt that my senses were more like those of an animal. Does my brain have deeper access to the ancient anti-predator circuits that humans share with animals? At night, I cannot get to sleep if I hear high-pitched, intermittent noise such as a backup alarm on a truck or children yelling in the next hotel room; they make my heart race. Thunder or airport noise does not bother me, but the little high-pitched noises cannot be shut out. Recent research with pigs has confirmed that intermittent sounds are more disturbing to them than steady sounds.9
Why are high-pitched sounds disturbing to animals (and to me), while airport noises and thunder are not? I speculate that in nature the rumble of thunder is not dangerous but a high-pitched noise would be an animal's distress call. Beeping backup alarms and car alarms are electronic distress calls, which activate my nervous system even though I know they are harmless. It is almost as though these animal circuits in my brain have been laid bare.
Proportional thinking
A recent report in Science indicated that activities involving numbers are processed in at least two different parts of the brain.10 Precise calculations are dependent on language and are processed in the frontal areas; proportional figuring is processed in visual areas. Proportional thinking is figuring out if one object is less or more than another. For example, three marbles are more than one marble. Animals can do proportional thinking. They can easily determine that 10 pieces of food are more than two. It is likely that proportional thinking is the kind of number processing that humans share with animals.
In school, math was a tough subject for me. Finding the precisely correct answer is difficult because I mix up numbers. On the other hand, I am very good at proportional thinking, coming up with an accurate approximate answer. In my scientific work, I often convert numerical differences between my control and experimental groups to percentage differences. Percentage differences can be visualized on a pie chart. When I present data, I like to use charts and graphs so I can see the proportional differences between different sets of data.
When I did cost estimating for cattle industry construction projects, I never tried to calculate projects to the penny. Instead, I estimated the cost of a new job by figuring out its proportional cost in relation to other finished projects. This was mainly a visual process. I would look at the drawing and build the entire project in my imagination. I then would put it up on the video screen in my imagination and compare it in size to other completed projects that had complete cost figures. In my mind, I could compare four or five completed projects with the drawing I was estimating. The project being estimated might be equal to two-thirds of a cattle-handling facility that I designed at Red River Feedlot and about 25 percent bigger than a corral I designed for Lone Mountain Ranch.
For money to have meaning to me, it must be related to something I can buy with it, otherwise it is too abstract. For example, $3 is equal to lunch at McDonald's, $20 is a tank of gas, and $1000 can buy a computer. Big tables full of figures make little sense to me. Some more severely autistic people do not understand money at all. For me to understand a billion dollars, I have to have a picture in my mind of something that cost a billion dollars. One billion is one quarter of the cost of the new Denver Airport. When President Clinton announced part way through the war in Kosovo that it had cost $2 billion, I figured that half a Denver Airport worth of money had been spent. Different amounts of money have different visual values. It is interesting that proportional thinking for numbers is in the visual parts of the brain.
In proportional thinking, as in creating something new, making a decision, and forming concepts, my thinking relies on more direct access to the primary visual memory areas in my brain. There is a whole higher level of abstract thinking seamlessly linked to emotion that I do not have.
Friday, May 2, 2008
Thristan Tum Tum Mendoza
World Autism Awareness Day (WAAD) Concert 1
Tum Tum is the only Filipino listed in Wisconsins Savant Autism Site.
Tum Tum is the only Filipino listed in Wisconsins Savant Autism Site.
Tuesday, April 29, 2008
James Cucek is a musical savant and his Mom is a mother on a mission.
James lives in British Columbia. He is 21 years old now and plays the piano brilliantly, as well as the accordion and harmonica. He composes his own songs, although he has never had music lesson in his life. He belongs to Socan, which is a Society of composers, authors and music publishers of Canada. He carries a diagnosis of high functioning Asperger's Disorder. Who better to give the background on James than his own mother in her own words:
"When James was only two years old he would listen to songs on television and then hum the words back. He started becoming interested in playing piano when he was four years old. My husband Stan and I bought him a small toy piano for Christmas. After that he would listen to music on the radio or television, and play it back. He found the piano playing to be very therapeutic.
When James turned 13 he told us the piano didn't have enough keys. He wanted 88 keys like a real pianos had. Since we couldn't afford such a piano at that time I decided to write a letter to "Let's Make a Wish" television show for people who were very gifted musically but couldn't afford a piano. I recruited three professional people that knew James to write a letter on how gifted a savant he was and how a piano would really improve his quality of life. About a week before Christmas James was watching the "Let's Make a Wish" program and they read my letter and mentioned that James would receive a beautiful Clarinova Piano for Christmas. Our whole family, including James, had tears of joy coming from our eyes. James shouted out "Mom, you got me the piano!"
Even since that time James has been playing his piano diligently and now is composing his own songs. He puts those songs on a disk and he has over 300 such songs that he has composed. He loves Yanni. He listens to Yanni's piano music and plays it back in tune with every note just as Janni plays it, as well as other piano songs he hears.
James sits for hours each day playing different songs on his 88 key piano that he will never forget his Mom got him that one very special Christmas Eve. James says he would like to be like Glenn Gould, a famous Canadian piano player. But to me, James is already famous. James is on some medication related to his Asperger's Disorder and sometimes that seems to interfere with his playing, much to his frustration.James rocks his head back and forth to music, even when singing in church. He was just born with this musical talent. He's like God's angel that came to earth to bring joy to people with his musical talent. He can also play the harmonica, accordion and organ. Before he got his piano he did play the organ but wasn't happy with that because it did not have all the keys a real piano has.
James has made me, as his mother, have a total new outlook on life-that nothing is impossible, even reaching the stars! James, in my mind, is a star. Because of him I have done things regarding advocacy for many Canadian children and adults so that they can receive Applied Behavioral Analysis (ABA) treatment and other appropriate therapies. I feel good about what I have accomplished. Being a United States Marine has helped mold me into a fighter, where nothing is impossible, to take on the task of providing James, and other persons with autism and Asperger's, better treatment opportunities with the goal of providing a better life overall. I have a deep respect for children and adults with disabilities, and their families, and that propels me along in this vital mission."
When Kim Peek and Fran Peek came to address an Autism Conference in Canada in 2002, James had a chance to meet Kim and they have been friends since that time, corresponding regularly. Also, Fran and Kim have become involved in the mother's advocacy efforts and Fran has written several letters of support which Mom has been able to share with officials and others interested in helping to provide more treatment resources in the province.
An article in a British Columbia newspaper in January, 2003 gives some additional background on both James, and the advocacy effort. It also reveals that a documentary about James is underway through combined efforts of a Canadian and U.S. film company. James plans to combine his music performance ability with electronic engineering which is a sizeable part of the musical scene everywhere these days.
"When James was only two years old he would listen to songs on television and then hum the words back. He started becoming interested in playing piano when he was four years old. My husband Stan and I bought him a small toy piano for Christmas. After that he would listen to music on the radio or television, and play it back. He found the piano playing to be very therapeutic.
When James turned 13 he told us the piano didn't have enough keys. He wanted 88 keys like a real pianos had. Since we couldn't afford such a piano at that time I decided to write a letter to "Let's Make a Wish" television show for people who were very gifted musically but couldn't afford a piano. I recruited three professional people that knew James to write a letter on how gifted a savant he was and how a piano would really improve his quality of life. About a week before Christmas James was watching the "Let's Make a Wish" program and they read my letter and mentioned that James would receive a beautiful Clarinova Piano for Christmas. Our whole family, including James, had tears of joy coming from our eyes. James shouted out "Mom, you got me the piano!"
Even since that time James has been playing his piano diligently and now is composing his own songs. He puts those songs on a disk and he has over 300 such songs that he has composed. He loves Yanni. He listens to Yanni's piano music and plays it back in tune with every note just as Janni plays it, as well as other piano songs he hears.
James sits for hours each day playing different songs on his 88 key piano that he will never forget his Mom got him that one very special Christmas Eve. James says he would like to be like Glenn Gould, a famous Canadian piano player. But to me, James is already famous. James is on some medication related to his Asperger's Disorder and sometimes that seems to interfere with his playing, much to his frustration.James rocks his head back and forth to music, even when singing in church. He was just born with this musical talent. He's like God's angel that came to earth to bring joy to people with his musical talent. He can also play the harmonica, accordion and organ. Before he got his piano he did play the organ but wasn't happy with that because it did not have all the keys a real piano has.
James has made me, as his mother, have a total new outlook on life-that nothing is impossible, even reaching the stars! James, in my mind, is a star. Because of him I have done things regarding advocacy for many Canadian children and adults so that they can receive Applied Behavioral Analysis (ABA) treatment and other appropriate therapies. I feel good about what I have accomplished. Being a United States Marine has helped mold me into a fighter, where nothing is impossible, to take on the task of providing James, and other persons with autism and Asperger's, better treatment opportunities with the goal of providing a better life overall. I have a deep respect for children and adults with disabilities, and their families, and that propels me along in this vital mission."
When Kim Peek and Fran Peek came to address an Autism Conference in Canada in 2002, James had a chance to meet Kim and they have been friends since that time, corresponding regularly. Also, Fran and Kim have become involved in the mother's advocacy efforts and Fran has written several letters of support which Mom has been able to share with officials and others interested in helping to provide more treatment resources in the province.
An article in a British Columbia newspaper in January, 2003 gives some additional background on both James, and the advocacy effort. It also reveals that a documentary about James is underway through combined efforts of a Canadian and U.S. film company. James plans to combine his music performance ability with electronic engineering which is a sizeable part of the musical scene everywhere these days.
Thursday, April 24, 2008
Savants: Despite their amazing abilities, science has ignored these individuals.
Eye on Autism
By Dan Olmsted
Lately I’ve been trying to make sense of savants. What is the relationship between autism and the extraordinary abilities that, in a small percentage of cases, accompany it? Rain Man put both autism and savant skills on the map and may have created a bias toward believing that they go together a lot more often than they do.
Yet a number of important historical figures have been retrospectively “diagnosed” with both – principally Einstein, who indisputably had speech delay and an incredible visual imagination; and Newton, who shut himself up in his room for two years and emerged with the Principia, a feat of single-minded genius.
Today’s most astonishing autistic savant is Daniel Tammet, the Great Britain native who recited pi to 22,514 digits in just over five hours and taught himself Icelandic – one of the world’s toughest languages – in a week so he could speak it when he appeared on a talk show there. And there are many lesser-known people who nonetheless have amazing abilities – I met a man at an autism conference who was a taxi driver in New York when he went to see Rain Man. There’s a moment when Dustin Hoffman is asked to solve a complicated math problem, and this man astonished the audience by shouting out the answer before Hoffman did! He had no idea he was either autistic or a savant, but when he left the theater he touched the poster of Hoffman and said, “Finally I know – that’s who I am.”
Late 19th century England also seemed to produce plausibly autistic savants – for more on that, and the entire phenomenon of savants, see Dr. Darold Treffert’s fascinating site, http://www.wisconsinmedicalsociety.org/savant_syndrome/ and the earliest cases series of autistic children reported in the United States, by Leo Kanner in 1943, began with Donald T., who could recite the Presbyterian catechism as a toddler and (his brother told me a couple of years ago) has perfect pitch.
I also put Jason “J-Mac” McElwain somewhere in this constellation. He’s the high school basketball team manager in Greece, N.Y., who got his big chance and sank six three-pointers. In his new book, The Game of My Life, he writes: “The big point I want to make in this chapter is it’s all about focus.” No doubt that’s true, but I could focus all I want and I would not sink six three-pointers the first time I got the chance. Whether or not he was “hot as a pistol,” as Jason says, I suspect some aspect of his autism was also at work.
Let’s assume for the moment that all the people I’ve described do fit somewhere on the spectrum, and that their extraordinary abilities are an aspect of that. Does that give us any clues to where this all came from?
I’ve written in Spectrum about my reporting that suggests the early cases of autism in this country can be connected to organic mercury – in fungicides and vaccines. Donald T., for example, lives in the aptly named Forest, Miss., in the middle of a national forest and not far from where mercury was first tested as a lumber preservative. (That may seem like a reach, but consider that Case 2 was the son of a forestry professor in the south, and Case 3 the son of a plant pathologist.)
I can think of possible links to several other cases as well. Daniel Tammet writes in his autobiography, Born on a Blue Day, that his father came home from the sheet metal factory still covered in dust, which had to be mostly heavy metals. Newton was into alchemy as well as calculus – bridging, in effect, the superstition of the Middle Ages and the enlightenment of the Renaissance. And in alchemy, the king of metals was mercury.
Einstein’s mother’s father was a grain merchant. What kind of fungicides and other toxins might she (or Albert) have been exposed to? I don’t know much about J-Mac – he doesn’t say what his parents do – but I was struck by this comment by his mother in an afterward to the book: “In 1985, our family moved to a brand new development in the town of Greece, N.Y. Within three years we had both Josh and Jason.” I can’t tell you the number of families I’ve visited who will point out some sort of construction project or renovation or earth-moving that was going on when they were pregnant with their child. They all believed that exposure to chemicals and toxins in utero played a role.
None of this is to take away from Jason’s accomplishments or the general theory of relativity, obviously. But we need to look for clues to the causes and varieties of autism wherever we can find them. Maybe savants get such a truckload of certain toxins that the source is more evident in those cases.
Recently, a mom named Sonja Lopez posted a comment on my blog at AgeofAutism.com, that really blew me away. Here’s what she said:
“I wanted to let you in on a few interesting facts about Anna and her skills. We started losing her after her 12-month vaccines (although I did not make that connection yet). She was pulling away in terms of eye contact and responsiveness but what developed instead was an incredible interest in the written word. By 15 months she was a fluent reader (could pronounce words she had never seen before perfectly – they called it spontaneous phonetic encoding). By the age of two she could read or spell anything you asked of her but could not put two words together functionally. By age 3 she was a computer wiz able to navigate the internet and complete most children’s software. She also has a gift for music and perfect pitch … she could reproduce tunes on the piano by ear.
“As seemingly wonderful as her gifts appeared, they also hindered and restricted her ability to recover. Her mind was so far ahead of the normal and mundane aspects of everyday living. We could not compete with the amazing things in her head. By the age of 4 we started our bio-medical journey and as her underlying medical issues were addressed and her language, communication, and ability to play improved, her savant skills started to recede.
“She still has an amazing ability to learn languages, an incredible memory, can type 120 words per minute and has flawless grammar, punctuation, and spelling but what we have come to realize is that these skills not only can help her navigate the world but are also a hindrance to her recovery. As she improves, they play a smaller role in her life…it is like watching the brain shift its abilities into areas that were silent in the past. You can see her at www.turnautismaround.com.”
Does any of this mean we shouldn’t celebrate such extraordinary feats? No, not at all. The great Bernie Rimland – who believed vaccines triggered the huge rise in autism diagnoses and pioneered the biomedical approach to treating them – delighted in the artistic ability of his son, Mark, and sometimes had a savant perform amazing calendar and calculation feats at his presentations.
But here’s the point, and I’ll let Sonja Lopez make it. “You would think these amazing skills in kids so obviously disabled would spark the interest of someone in the medical community. What do they have in common? Does the biomedical path to recovery diminish these skills in all of these kids? This is amazing science. Why is it not studied?”
By Dan Olmsted
Lately I’ve been trying to make sense of savants. What is the relationship between autism and the extraordinary abilities that, in a small percentage of cases, accompany it? Rain Man put both autism and savant skills on the map and may have created a bias toward believing that they go together a lot more often than they do.
Yet a number of important historical figures have been retrospectively “diagnosed” with both – principally Einstein, who indisputably had speech delay and an incredible visual imagination; and Newton, who shut himself up in his room for two years and emerged with the Principia, a feat of single-minded genius.
Today’s most astonishing autistic savant is Daniel Tammet, the Great Britain native who recited pi to 22,514 digits in just over five hours and taught himself Icelandic – one of the world’s toughest languages – in a week so he could speak it when he appeared on a talk show there. And there are many lesser-known people who nonetheless have amazing abilities – I met a man at an autism conference who was a taxi driver in New York when he went to see Rain Man. There’s a moment when Dustin Hoffman is asked to solve a complicated math problem, and this man astonished the audience by shouting out the answer before Hoffman did! He had no idea he was either autistic or a savant, but when he left the theater he touched the poster of Hoffman and said, “Finally I know – that’s who I am.”
Late 19th century England also seemed to produce plausibly autistic savants – for more on that, and the entire phenomenon of savants, see Dr. Darold Treffert’s fascinating site, http://www.wisconsinmedicalsociety.org/savant_syndrome/ and the earliest cases series of autistic children reported in the United States, by Leo Kanner in 1943, began with Donald T., who could recite the Presbyterian catechism as a toddler and (his brother told me a couple of years ago) has perfect pitch.
I also put Jason “J-Mac” McElwain somewhere in this constellation. He’s the high school basketball team manager in Greece, N.Y., who got his big chance and sank six three-pointers. In his new book, The Game of My Life, he writes: “The big point I want to make in this chapter is it’s all about focus.” No doubt that’s true, but I could focus all I want and I would not sink six three-pointers the first time I got the chance. Whether or not he was “hot as a pistol,” as Jason says, I suspect some aspect of his autism was also at work.
Let’s assume for the moment that all the people I’ve described do fit somewhere on the spectrum, and that their extraordinary abilities are an aspect of that. Does that give us any clues to where this all came from?
I’ve written in Spectrum about my reporting that suggests the early cases of autism in this country can be connected to organic mercury – in fungicides and vaccines. Donald T., for example, lives in the aptly named Forest, Miss., in the middle of a national forest and not far from where mercury was first tested as a lumber preservative. (That may seem like a reach, but consider that Case 2 was the son of a forestry professor in the south, and Case 3 the son of a plant pathologist.)
I can think of possible links to several other cases as well. Daniel Tammet writes in his autobiography, Born on a Blue Day, that his father came home from the sheet metal factory still covered in dust, which had to be mostly heavy metals. Newton was into alchemy as well as calculus – bridging, in effect, the superstition of the Middle Ages and the enlightenment of the Renaissance. And in alchemy, the king of metals was mercury.
Einstein’s mother’s father was a grain merchant. What kind of fungicides and other toxins might she (or Albert) have been exposed to? I don’t know much about J-Mac – he doesn’t say what his parents do – but I was struck by this comment by his mother in an afterward to the book: “In 1985, our family moved to a brand new development in the town of Greece, N.Y. Within three years we had both Josh and Jason.” I can’t tell you the number of families I’ve visited who will point out some sort of construction project or renovation or earth-moving that was going on when they were pregnant with their child. They all believed that exposure to chemicals and toxins in utero played a role.
None of this is to take away from Jason’s accomplishments or the general theory of relativity, obviously. But we need to look for clues to the causes and varieties of autism wherever we can find them. Maybe savants get such a truckload of certain toxins that the source is more evident in those cases.
Recently, a mom named Sonja Lopez posted a comment on my blog at AgeofAutism.com, that really blew me away. Here’s what she said:
“I wanted to let you in on a few interesting facts about Anna and her skills. We started losing her after her 12-month vaccines (although I did not make that connection yet). She was pulling away in terms of eye contact and responsiveness but what developed instead was an incredible interest in the written word. By 15 months she was a fluent reader (could pronounce words she had never seen before perfectly – they called it spontaneous phonetic encoding). By the age of two she could read or spell anything you asked of her but could not put two words together functionally. By age 3 she was a computer wiz able to navigate the internet and complete most children’s software. She also has a gift for music and perfect pitch … she could reproduce tunes on the piano by ear.
“As seemingly wonderful as her gifts appeared, they also hindered and restricted her ability to recover. Her mind was so far ahead of the normal and mundane aspects of everyday living. We could not compete with the amazing things in her head. By the age of 4 we started our bio-medical journey and as her underlying medical issues were addressed and her language, communication, and ability to play improved, her savant skills started to recede.
“She still has an amazing ability to learn languages, an incredible memory, can type 120 words per minute and has flawless grammar, punctuation, and spelling but what we have come to realize is that these skills not only can help her navigate the world but are also a hindrance to her recovery. As she improves, they play a smaller role in her life…it is like watching the brain shift its abilities into areas that were silent in the past. You can see her at www.turnautismaround.com.”
Does any of this mean we shouldn’t celebrate such extraordinary feats? No, not at all. The great Bernie Rimland – who believed vaccines triggered the huge rise in autism diagnoses and pioneered the biomedical approach to treating them – delighted in the artistic ability of his son, Mark, and sometimes had a savant perform amazing calendar and calculation feats at his presentations.
But here’s the point, and I’ll let Sonja Lopez make it. “You would think these amazing skills in kids so obviously disabled would spark the interest of someone in the medical community. What do they have in common? Does the biomedical path to recovery diminish these skills in all of these kids? This is amazing science. Why is it not studied?”
Tuesday, April 22, 2008
Autistic savant
Autism is a puzzling disorder characterised by developmental delays. A person with autism often has problems understanding the meaning and purpose of body language and the spoken and written word. They find social interaction difficult, confusing and scary.
'Autistic savant' means a person with autism who has a special skill. 'Savant' comes from the French word for 'knowing' and means 'a learned person'. A person with this condition was once known as an 'idiot savant', since 'idiot' was an acceptable word for mental retardation in the late 19th century, when the phenomenon was first medically investigated. Around 10 per cent of people with autism show special or even remarkable skills. For example, a person with autism, who may be intellectually disabled in most ways, could have an exceptional memory for numbers.
Savant skills are occasionally found in people with other types of intellectual disability and in the non-disabled population, so most researchers use the term 'savant syndrome' instead of autistic savant.
A range of savant abilities
Around 10 per cent of people with autism show special or even remarkable skills. The skills range includes:
* Splinter skills - the most common type. The person, like an obsessive hobbyist, commits certain things to memory, such as sports trivia.
* Talented skills - the person has a more highly developed and specialised skill. For example, they may be artistic and paint beautiful pictures, or have a memory that allows them to work out difficult mathematical calculations in their head.
* Prodigious skills - the rarest type. It is thought that there are only about 25 autistic savants in the world who show prodigious skills. These skills could include, for example, the ability to play an entire concerto on the piano after hearing it only once.
Specialised skill
In all cases of savant syndrome, the skill is specific, limited and most often reliant on memory. Generally, savant skills include:
* Music - the piano is the most popular instrument. For example, the skill may be the ability to play the piano without being taught.
* Art - such as the ability to draw, paint or sculpt to high standards. For example, Richard Wawro is an autistic savant who is also blind, but his crayon drawings command up to $10,000 each.
* Mathematics - for example, the ability to work out complicated sums in their head, or to calendar calculate (for example, work out what day it was on 1 June1732).
* Language - in rare cases, the person may be unusually gifted in languages.
* Other skills - such as knowing the time without seeing a clock, untaught mechanical skills, having an unfailing sense of direction or the ability to commit maps to memory.
The brain's right hemisphere
Autistic savant behaviour is so far unexplained. However, researchers think it might have something to do with the right hemisphere of the brain.
The brain is divided into two hemispheres, left and right, bridged by a thick band of nerve fibres called the corpus callosum. While left hemisphere skills are involved with symbolism and interpretation (such as understanding words and body language), the skills of the right hemisphere are much more concrete and direct (such as memory).
CT and MRI scans of the brains of autistic savants suggest that the right hemisphere is compensating for damage in the left hemisphere. It seems that the right hemisphere of an autistic savant focuses its attention on one of the five senses - for example, if it concentrates on hearing, then the autistic savant may have a special skill in music. Research is ongoing.
Their skills may be reinforced
It is thought that habitual memory centres of the brain take over from higher memory centres, which helps to explain why some autistic savants are like obsessive hobbyists who do the same thing over and over. Apart from habitual memory, other factors that may help an autistic savant to hone their special skill could include:
* The ability to focus and concentrate
* The desire to practise endlessly
* Positive reinforcement by family, friends and caregivers.
Every brain may have untapped savant skills
San Franciscan neurologist Dr Bruce Miller recently discovered new savant skills in some of his patients who were undergoing a certain type of dementia. These patients had a type of dementia that affected the left temporal region of their brains (located over the left ear).
When the patients were given brain function tests, their results were similar to those of a young autistic savant. Researchers from the Flinders University in Adelaide were able to provoke new savant skills in volunteers by using transcranial magnetic stimulation to temporarily 'disable' the frontal temporal lobe. (Transcranial magnetic stimulation is a type of treatment for depression.) During the test, five of the 17 volunteers showed new and remarkable skills like calendar calculation. These studies suggest that amazing savant abilities may be lying dormant in all of us.
Where to get help
* Your doctor
* Austism Infoline Tel. 1300 308 699 or email info@autismvictoria.org.au
* Autism Victoria Tel. (03) 9885 0533
* The Centre for Developmental Disability Health Victoria (CDDHV) Tel. (03) 9564 7511
Things to remember
* Autistic savant means a person with autism who has a special skill.
* Around 10 per cent of people with autism show special or even remarkable skills.
* Savant skills can be occasionally found in people with other types of intellectual disability and in the non-disabled population.
'Autistic savant' means a person with autism who has a special skill. 'Savant' comes from the French word for 'knowing' and means 'a learned person'. A person with this condition was once known as an 'idiot savant', since 'idiot' was an acceptable word for mental retardation in the late 19th century, when the phenomenon was first medically investigated. Around 10 per cent of people with autism show special or even remarkable skills. For example, a person with autism, who may be intellectually disabled in most ways, could have an exceptional memory for numbers.
Savant skills are occasionally found in people with other types of intellectual disability and in the non-disabled population, so most researchers use the term 'savant syndrome' instead of autistic savant.
A range of savant abilities
Around 10 per cent of people with autism show special or even remarkable skills. The skills range includes:
* Splinter skills - the most common type. The person, like an obsessive hobbyist, commits certain things to memory, such as sports trivia.
* Talented skills - the person has a more highly developed and specialised skill. For example, they may be artistic and paint beautiful pictures, or have a memory that allows them to work out difficult mathematical calculations in their head.
* Prodigious skills - the rarest type. It is thought that there are only about 25 autistic savants in the world who show prodigious skills. These skills could include, for example, the ability to play an entire concerto on the piano after hearing it only once.
Specialised skill
In all cases of savant syndrome, the skill is specific, limited and most often reliant on memory. Generally, savant skills include:
* Music - the piano is the most popular instrument. For example, the skill may be the ability to play the piano without being taught.
* Art - such as the ability to draw, paint or sculpt to high standards. For example, Richard Wawro is an autistic savant who is also blind, but his crayon drawings command up to $10,000 each.
* Mathematics - for example, the ability to work out complicated sums in their head, or to calendar calculate (for example, work out what day it was on 1 June1732).
* Language - in rare cases, the person may be unusually gifted in languages.
* Other skills - such as knowing the time without seeing a clock, untaught mechanical skills, having an unfailing sense of direction or the ability to commit maps to memory.
The brain's right hemisphere
Autistic savant behaviour is so far unexplained. However, researchers think it might have something to do with the right hemisphere of the brain.
The brain is divided into two hemispheres, left and right, bridged by a thick band of nerve fibres called the corpus callosum. While left hemisphere skills are involved with symbolism and interpretation (such as understanding words and body language), the skills of the right hemisphere are much more concrete and direct (such as memory).
CT and MRI scans of the brains of autistic savants suggest that the right hemisphere is compensating for damage in the left hemisphere. It seems that the right hemisphere of an autistic savant focuses its attention on one of the five senses - for example, if it concentrates on hearing, then the autistic savant may have a special skill in music. Research is ongoing.
Their skills may be reinforced
It is thought that habitual memory centres of the brain take over from higher memory centres, which helps to explain why some autistic savants are like obsessive hobbyists who do the same thing over and over. Apart from habitual memory, other factors that may help an autistic savant to hone their special skill could include:
* The ability to focus and concentrate
* The desire to practise endlessly
* Positive reinforcement by family, friends and caregivers.
Every brain may have untapped savant skills
San Franciscan neurologist Dr Bruce Miller recently discovered new savant skills in some of his patients who were undergoing a certain type of dementia. These patients had a type of dementia that affected the left temporal region of their brains (located over the left ear).
When the patients were given brain function tests, their results were similar to those of a young autistic savant. Researchers from the Flinders University in Adelaide were able to provoke new savant skills in volunteers by using transcranial magnetic stimulation to temporarily 'disable' the frontal temporal lobe. (Transcranial magnetic stimulation is a type of treatment for depression.) During the test, five of the 17 volunteers showed new and remarkable skills like calendar calculation. These studies suggest that amazing savant abilities may be lying dormant in all of us.
Where to get help
* Your doctor
* Austism Infoline Tel. 1300 308 699 or email info@autismvictoria.org.au
* Autism Victoria Tel. (03) 9885 0533
* The Centre for Developmental Disability Health Victoria (CDDHV) Tel. (03) 9564 7511
Things to remember
* Autistic savant means a person with autism who has a special skill.
* Around 10 per cent of people with autism show special or even remarkable skills.
* Savant skills can be occasionally found in people with other types of intellectual disability and in the non-disabled population.
Friday, April 18, 2008
A genius explains
Daniel Tammet is an autistic savant. He can perform mind-boggling mathematical calculations at breakneck speeds. But unlike other savants, who can perform similar feats, Tammet can describe how he does it. He speaks seven languages and is even devising his own language. Now scientists are asking whether his exceptional abilities are the key to unlock the secrets of autism. Interview by Richard Johnson
Daniel Tammet is talking. As he talks, he studies my shirt and counts the stitches. Ever since the age of three, when he suffered an epileptic fit, Tammet has been obsessed with counting. Now he is 26, and a mathematical genius who can figure out cube roots quicker than a calculator and recall pi to 22,514 decimal places. He also happens to be autistic, which is why he can't drive a car, wire a plug, or tell right from left. He lives with extraordinary ability and disability.
Tammet is calculating 377 multiplied by 795. Actually, he isn't "calculating": there is nothing conscious about what he is doing. He arrives at the answer instantly. Since his epileptic fit, he has been able to see numbers as shapes, colours and textures. The number two, for instance, is a motion, and five is a clap of thunder. "When I multiply numbers together, I see two shapes. The image starts to change and evolve, and a third shape emerges. That's the answer. It's mental imagery. It's like maths without having to think."
Tammet is a "savant", an individual with an astonishing, extraordinary mental ability. An estimated 10% of the autistic population - and an estimated 1% of the non-autistic population - have savant abilities, but no one knows exactly why. A number of scientists now hope that Tammet might help us to understand better. Professor Allan Snyder, from the Centre for the Mind at the Australian National University in Canberra, explains why Tammet is of particular, and international, scientific interest. "Savants can't usually tell us how they do what they do," says Snyder. "It just comes to them. Daniel can. He describes what he sees in his head. That's why he's exciting. He could be the Rosetta Stone."
There are many theories about savants. Snyder, for instance, believes that we all possess the savant's extraordinary abilities - it is just a question of us learning how to access them. "Savants have usually had some kind of brain damage. Whether it's an onset of dementia later in life, a blow to the head or, in the case of Daniel, an epileptic fit. And it's that brain damage which creates the savant. I think that it's possible for a perfectly normal person to have access to these abilities, so working with Daniel could be very instructive."
Scans of the brains of autistic savants suggest that the right hemisphere might be compensating for damage in the left hemisphere. While many savants struggle with language and comprehension (skills associated primarily with the left hemisphere), they often have amazing skills in mathematics and memory (primarily right hemisphere skills). Typically, savants have a limited vocabulary, but there is nothing limited about Tammet's vocabulary.
Tammet is creating his own language, strongly influenced by the vowel and image-rich languages of northern Europe. (He already speaks French, German, Spanish, Lithuanian, Icelandic and Esperanto.) The vocabulary of his language - "Mänti", meaning a type of tree - reflects the relationships between different things. The word "ema", for instance, translates as "mother", and "ela" is what a mother creates: "life". "Päike" is "sun", and "päive" is what the sun creates: "day". Tammet hopes to launch Mänti in academic circles later this year, his own personal exploration of the power of words and their inter-relationship.
Professor Simon Baron-Cohen, director of the Autism Research Centre (ARC) at Cambridge University, is interested in what Mänti might teach us about savant ability. "I know of other savants who also speak a lot of languages," says Baron-Cohen. "But it's rare for them to be able to reflect on how they do it - let alone create a language of their own." The ARC team has started scanning Tammet's brain to find out if there are modules (for number, for example, or for colour, or for texture) that are connected in a way that is different from most of us. "It's too early to tell, but we hope it might throw some light on why we don't all have savant abilities."
Last year Tammet broke the European record for recalling pi, the mathematical constant, to the furthest decimal point. He found it easy, he says, because he didn't even have to "think". To him, pi isn't an abstract set of digits; it's a visual story, a film projected in front of his eyes. He learnt the number forwards and backwards and, last year, spent five hours recalling it in front of an adjudicator. He wanted to prove a point. "I memorised pi to 22,514 decimal places, and I am technically disabled. I just wanted to show people that disability needn't get in the way."
Tammet is softly spoken, and shy about making eye contact, which makes him seem younger than he is. He lives on the Kent coast, but never goes near the beach - there are too many pebbles to count. The thought of a mathematical problem with no solution makes him feel uncomfortable. Trips to the supermarket are always a chore. "There's too much mental stimulus. I have to look at every shape and texture. Every price, and every arrangement of fruit and vegetables. So instead of thinking,'What cheese do I want this week?', I'm just really uncomfortable."
Tammet has never been able to work 9 to 5. It would be too difficult to fit around his daily routine. For instance, he has to drink his cups of tea at exactly the same time every day. Things have to happen in the same order: he always brushes his teeth before he has his shower. "I have tried to be more flexible, but I always end up feeling more uncomfortable. Retaining a sense of control is really important. I like to do things in my own time, and in my own style, so an office with targets and bureaucracy just wouldn't work."
Instead, he has set up a business on his own, at home, writing email courses in language learning, numeracy and literacy for private clients. It has had the fringe benefit of keeping human interaction to a minimum. It also gives him time to work on the verb structures of Mänti.
Few people on the streets have recognised Tammet since his pi record attempt. But, when a documentary about his life is broadcast on Channel 5 later this year, all that will change. "The highlight of filming was to meet Kim Peek, the real-life character who inspired the film Rain Man. Before I watched Rain Man, I was frightened. As a nine-year-old schoolboy, you don't want people to point at the screen and say, 'That's you.' But I watched it, and felt a real connection. Getting to meet the real-life Rain Man was inspirational."
Peek was shy and introspective, but he sat and held Tammet's hand for hours. "We shared so much - our love of key dates from history, for instance. And our love of books. As a child, I regularly took over a room in the house and started my own lending library. I would separate out fiction and non-fiction, and then alphabetise them all. I even introduced a ticketing system. I love books so much. I've read more books than anyone else I know. So I was delighted when Kim wanted to meet in a library." Peek can read two pages simultaneously, one with each eye. He can also recall, in exact detail, the 7,600 books he has read. When he is at home in Utah, he spends afternoons at the Salt Lake City public library, memorising phone books and address directories."He is such a lovely man," says Tammet. "Kim says, 'You don't have to be handicapped to be different - everybody's different'. And he's right."
Like Peek, Tammet will read anything and everything, but his favourite book is a good dictionary, or the works of GK Chesterton. "With all those aphorisms," he says, "Chesterton was the Groucho Marx of his day." Tammet is also a Christian, and likes the fact that Chesterton addressed some complex religious ideas. "The other thing I like is that, judging by the descriptions of his home life, I reckon Chesterton was a savant. He couldn't dress himself, and would always forget where he was going. His poor wife."
Autistic savants have displayed a wide range of talents, from reciting all nine volumes of Grove's Dictionary Of Music to measuring exact distances with the naked eye. The blind American savant Leslie Lemke played Tchaikovsky's Piano Concerto No1, after he heard it for the first time, and he never had so much as a piano lesson. And the British savant Stephen Wiltshire was able to draw a highly accurate map of the London skyline from memory after a single helicopter trip over the city. Even so, Tammet could still turn out to be the more significant.
He was born on January 31 1979. He smiles as he points out that 31, 19, 79 and 1979 are all prime numbers - it's a kind of sign. He was actually born with another surname, which he prefers to keep private, but decided to change it by deed poll. It didn't fit with the way he saw himself. "I first saw 'Tammet' online. It means oak tree in Estonian, and I liked that association. Besides, I've always had a love of Estonian. Such a vowel rich language."
As a baby, he banged his head against the wall and cried constantly. Nobody knew what was wrong. His mother was anxious, and would swing him to sleep in a blanket. She breastfed him for two years. The only thing the doctors could say was that perhaps he was understimulated. Then, one afternoon when he was playing with his brother in the living room, he had an epileptic fit.
"I was given medication - round blue tablets - to control my seizures, and told not to go out in direct sunlight. I had to visit the hospital every month for regular blood tests. I hated those tests, but I knew they were necessary. To make up for it, my father would always buy me a cup of squash to drink while we sat in the waiting room. It was a worrying time because my Dad's father had epilepsy, and actually died of it, in the end. They were thinking, 'This is the end of Daniel's life'."
Tammet's mother was a secretarial assistant, and his father a steelplate worker. "They both left school without qualifications, but they made us feel special - all nine of us. As the oldest of nine, I suppose it's fair to say I've always felt special." Even if his younger brothers and sisters could throw and catch better than him, swim better, kick a ball better, Daniel was always the oldest. "They loved me because I was their big brother and I could read them stories."
He remembers being given a Ladybird book called Counting when he was four. "When I looked at the numbers I 'saw' images. It felt like a place I could go where I really belonged. That was great. I went to this other country whenever I could. I would sit on the floor in my bedroom and just count. I didn't notice that time was passing. It was only when my Mum shouted up for dinner, or someone knocked at my door, that I would snap out of it."
One day his brother asked him a sum. "He asked me to multiply something in my head - like 'What is 82 x 82 x 82 x 82?' I just looked at the floor and closed my eyes. My back went very straight and I made my hands into fists. But after five or 10 seconds, the answer just flowed out of my mouth. He asked me several others, and I got every one right. My parents didn't seem surprised. And they never put pressure on me to perform for the neighbours. They knew I was different, but wanted me to have a normal life as far as possible."
Tammet could see the car park of his infant school from his bedroom window, which made him feel safe. "I loved assembly because we got to sing hymns. The notes formed a pattern in my head, just like the numbers did." The other children didn't know what to make of him, and would tease him. The minute the bell went for playtime he would rush off. "I went to the playground, but not to play. The place was surrounded by trees. While the other children were playing football, I would just stand and count the leaves."
As Tammet grew older, he developed an obsessive need to collect - everything from conkers to newspapers. "I remember seeing a ladybird for the first time," he says. "I loved it so much, I went round searching every hedge and every leaf for more. I collected hundreds, and took them to show the teacher. He was amazed, and asked me to get on with some assignment. While I was busy he instructed a classmate to take the tub outside and let the ladybirds go. I was so upset that I cried when I found out. He didn't understand my world."
Tammet may have been teased at school, but his teachers were always protective. "I think my parents must have had a word with them, so I was pretty much left alone." He found it hard to socialise with anyone outside the family, and, with the advent of adolesence, his shyness got worse.
After leaving school with three A-levels (History, French and German, all grade Bs), he decided he wanted to teach - only not the predictable, learn-by-rote type of teaching. For a start, he went to teach in Lithuania, and he worked as a volunteer. "Because I was there of my own free will, I was given a lot of leeway. The times of the classes weren't set in stone, and the structures were all of my own making. It was also the first time I was introduced as 'Daniel' rather than 'the guy who can do weird stuff in his head'. It was such a pleasant relief." Later, he returned home to live with his parents, and found work as a maths tutor.
He met the great love of his life, a software engineer called Neil, online. It began, as these things do, with emailed pictures, but ended up with a face-to-face meeting. "Because I can't drive, Neil offered to pick me up at my parents' house, and drive me back to his house in Kent. He was silent all the way back. I thought, 'Oh dear, this isn't going well'. Just before we got to his house, he stopped the car. He reached over and pulled out a bouquet of flowers. I only found out later that he was quiet because he likes to concentrate when he's driving."
Neil is shy, like Tammet. They live, happily, on a quiet cul-de-sac. The only aspect of Tammet's autism that causes them problems is his lack of empathy. "There's a saying in Judaism, if somebody has a relative who has hanged themselves, don't ask them where you should hang your coat. I need to remember that. Like the time I kept quizzing a friend of Neil's who had just lost her mother. I was asking her all these questions about faith and death. But that's down to my condition - no taboos."
When he isn't working, Tammet likes to hang out with his friends on the church quiz team. His knowledge of popular culture lets him down, but he's a shoo-in when it comes to the maths questions. "I do love numbers," he says. "It isn't only an intellectual or aloof thing that I do. I really feel that there is an emotional attachment, a caring for numbers. I think this is a human thing - in the same way that a poet humanises a river or a tree through metaphor, my world gives me a sense of numbers as personal. It sounds silly, but numbers are my friends."
Daniel Tammet is talking. As he talks, he studies my shirt and counts the stitches. Ever since the age of three, when he suffered an epileptic fit, Tammet has been obsessed with counting. Now he is 26, and a mathematical genius who can figure out cube roots quicker than a calculator and recall pi to 22,514 decimal places. He also happens to be autistic, which is why he can't drive a car, wire a plug, or tell right from left. He lives with extraordinary ability and disability.
Tammet is calculating 377 multiplied by 795. Actually, he isn't "calculating": there is nothing conscious about what he is doing. He arrives at the answer instantly. Since his epileptic fit, he has been able to see numbers as shapes, colours and textures. The number two, for instance, is a motion, and five is a clap of thunder. "When I multiply numbers together, I see two shapes. The image starts to change and evolve, and a third shape emerges. That's the answer. It's mental imagery. It's like maths without having to think."
Tammet is a "savant", an individual with an astonishing, extraordinary mental ability. An estimated 10% of the autistic population - and an estimated 1% of the non-autistic population - have savant abilities, but no one knows exactly why. A number of scientists now hope that Tammet might help us to understand better. Professor Allan Snyder, from the Centre for the Mind at the Australian National University in Canberra, explains why Tammet is of particular, and international, scientific interest. "Savants can't usually tell us how they do what they do," says Snyder. "It just comes to them. Daniel can. He describes what he sees in his head. That's why he's exciting. He could be the Rosetta Stone."
There are many theories about savants. Snyder, for instance, believes that we all possess the savant's extraordinary abilities - it is just a question of us learning how to access them. "Savants have usually had some kind of brain damage. Whether it's an onset of dementia later in life, a blow to the head or, in the case of Daniel, an epileptic fit. And it's that brain damage which creates the savant. I think that it's possible for a perfectly normal person to have access to these abilities, so working with Daniel could be very instructive."
Scans of the brains of autistic savants suggest that the right hemisphere might be compensating for damage in the left hemisphere. While many savants struggle with language and comprehension (skills associated primarily with the left hemisphere), they often have amazing skills in mathematics and memory (primarily right hemisphere skills). Typically, savants have a limited vocabulary, but there is nothing limited about Tammet's vocabulary.
Tammet is creating his own language, strongly influenced by the vowel and image-rich languages of northern Europe. (He already speaks French, German, Spanish, Lithuanian, Icelandic and Esperanto.) The vocabulary of his language - "Mänti", meaning a type of tree - reflects the relationships between different things. The word "ema", for instance, translates as "mother", and "ela" is what a mother creates: "life". "Päike" is "sun", and "päive" is what the sun creates: "day". Tammet hopes to launch Mänti in academic circles later this year, his own personal exploration of the power of words and their inter-relationship.
Professor Simon Baron-Cohen, director of the Autism Research Centre (ARC) at Cambridge University, is interested in what Mänti might teach us about savant ability. "I know of other savants who also speak a lot of languages," says Baron-Cohen. "But it's rare for them to be able to reflect on how they do it - let alone create a language of their own." The ARC team has started scanning Tammet's brain to find out if there are modules (for number, for example, or for colour, or for texture) that are connected in a way that is different from most of us. "It's too early to tell, but we hope it might throw some light on why we don't all have savant abilities."
Last year Tammet broke the European record for recalling pi, the mathematical constant, to the furthest decimal point. He found it easy, he says, because he didn't even have to "think". To him, pi isn't an abstract set of digits; it's a visual story, a film projected in front of his eyes. He learnt the number forwards and backwards and, last year, spent five hours recalling it in front of an adjudicator. He wanted to prove a point. "I memorised pi to 22,514 decimal places, and I am technically disabled. I just wanted to show people that disability needn't get in the way."
Tammet is softly spoken, and shy about making eye contact, which makes him seem younger than he is. He lives on the Kent coast, but never goes near the beach - there are too many pebbles to count. The thought of a mathematical problem with no solution makes him feel uncomfortable. Trips to the supermarket are always a chore. "There's too much mental stimulus. I have to look at every shape and texture. Every price, and every arrangement of fruit and vegetables. So instead of thinking,'What cheese do I want this week?', I'm just really uncomfortable."
Tammet has never been able to work 9 to 5. It would be too difficult to fit around his daily routine. For instance, he has to drink his cups of tea at exactly the same time every day. Things have to happen in the same order: he always brushes his teeth before he has his shower. "I have tried to be more flexible, but I always end up feeling more uncomfortable. Retaining a sense of control is really important. I like to do things in my own time, and in my own style, so an office with targets and bureaucracy just wouldn't work."
Instead, he has set up a business on his own, at home, writing email courses in language learning, numeracy and literacy for private clients. It has had the fringe benefit of keeping human interaction to a minimum. It also gives him time to work on the verb structures of Mänti.
Few people on the streets have recognised Tammet since his pi record attempt. But, when a documentary about his life is broadcast on Channel 5 later this year, all that will change. "The highlight of filming was to meet Kim Peek, the real-life character who inspired the film Rain Man. Before I watched Rain Man, I was frightened. As a nine-year-old schoolboy, you don't want people to point at the screen and say, 'That's you.' But I watched it, and felt a real connection. Getting to meet the real-life Rain Man was inspirational."
Peek was shy and introspective, but he sat and held Tammet's hand for hours. "We shared so much - our love of key dates from history, for instance. And our love of books. As a child, I regularly took over a room in the house and started my own lending library. I would separate out fiction and non-fiction, and then alphabetise them all. I even introduced a ticketing system. I love books so much. I've read more books than anyone else I know. So I was delighted when Kim wanted to meet in a library." Peek can read two pages simultaneously, one with each eye. He can also recall, in exact detail, the 7,600 books he has read. When he is at home in Utah, he spends afternoons at the Salt Lake City public library, memorising phone books and address directories."He is such a lovely man," says Tammet. "Kim says, 'You don't have to be handicapped to be different - everybody's different'. And he's right."
Like Peek, Tammet will read anything and everything, but his favourite book is a good dictionary, or the works of GK Chesterton. "With all those aphorisms," he says, "Chesterton was the Groucho Marx of his day." Tammet is also a Christian, and likes the fact that Chesterton addressed some complex religious ideas. "The other thing I like is that, judging by the descriptions of his home life, I reckon Chesterton was a savant. He couldn't dress himself, and would always forget where he was going. His poor wife."
Autistic savants have displayed a wide range of talents, from reciting all nine volumes of Grove's Dictionary Of Music to measuring exact distances with the naked eye. The blind American savant Leslie Lemke played Tchaikovsky's Piano Concerto No1, after he heard it for the first time, and he never had so much as a piano lesson. And the British savant Stephen Wiltshire was able to draw a highly accurate map of the London skyline from memory after a single helicopter trip over the city. Even so, Tammet could still turn out to be the more significant.
He was born on January 31 1979. He smiles as he points out that 31, 19, 79 and 1979 are all prime numbers - it's a kind of sign. He was actually born with another surname, which he prefers to keep private, but decided to change it by deed poll. It didn't fit with the way he saw himself. "I first saw 'Tammet' online. It means oak tree in Estonian, and I liked that association. Besides, I've always had a love of Estonian. Such a vowel rich language."
As a baby, he banged his head against the wall and cried constantly. Nobody knew what was wrong. His mother was anxious, and would swing him to sleep in a blanket. She breastfed him for two years. The only thing the doctors could say was that perhaps he was understimulated. Then, one afternoon when he was playing with his brother in the living room, he had an epileptic fit.
"I was given medication - round blue tablets - to control my seizures, and told not to go out in direct sunlight. I had to visit the hospital every month for regular blood tests. I hated those tests, but I knew they were necessary. To make up for it, my father would always buy me a cup of squash to drink while we sat in the waiting room. It was a worrying time because my Dad's father had epilepsy, and actually died of it, in the end. They were thinking, 'This is the end of Daniel's life'."
Tammet's mother was a secretarial assistant, and his father a steelplate worker. "They both left school without qualifications, but they made us feel special - all nine of us. As the oldest of nine, I suppose it's fair to say I've always felt special." Even if his younger brothers and sisters could throw and catch better than him, swim better, kick a ball better, Daniel was always the oldest. "They loved me because I was their big brother and I could read them stories."
He remembers being given a Ladybird book called Counting when he was four. "When I looked at the numbers I 'saw' images. It felt like a place I could go where I really belonged. That was great. I went to this other country whenever I could. I would sit on the floor in my bedroom and just count. I didn't notice that time was passing. It was only when my Mum shouted up for dinner, or someone knocked at my door, that I would snap out of it."
One day his brother asked him a sum. "He asked me to multiply something in my head - like 'What is 82 x 82 x 82 x 82?' I just looked at the floor and closed my eyes. My back went very straight and I made my hands into fists. But after five or 10 seconds, the answer just flowed out of my mouth. He asked me several others, and I got every one right. My parents didn't seem surprised. And they never put pressure on me to perform for the neighbours. They knew I was different, but wanted me to have a normal life as far as possible."
Tammet could see the car park of his infant school from his bedroom window, which made him feel safe. "I loved assembly because we got to sing hymns. The notes formed a pattern in my head, just like the numbers did." The other children didn't know what to make of him, and would tease him. The minute the bell went for playtime he would rush off. "I went to the playground, but not to play. The place was surrounded by trees. While the other children were playing football, I would just stand and count the leaves."
As Tammet grew older, he developed an obsessive need to collect - everything from conkers to newspapers. "I remember seeing a ladybird for the first time," he says. "I loved it so much, I went round searching every hedge and every leaf for more. I collected hundreds, and took them to show the teacher. He was amazed, and asked me to get on with some assignment. While I was busy he instructed a classmate to take the tub outside and let the ladybirds go. I was so upset that I cried when I found out. He didn't understand my world."
Tammet may have been teased at school, but his teachers were always protective. "I think my parents must have had a word with them, so I was pretty much left alone." He found it hard to socialise with anyone outside the family, and, with the advent of adolesence, his shyness got worse.
After leaving school with three A-levels (History, French and German, all grade Bs), he decided he wanted to teach - only not the predictable, learn-by-rote type of teaching. For a start, he went to teach in Lithuania, and he worked as a volunteer. "Because I was there of my own free will, I was given a lot of leeway. The times of the classes weren't set in stone, and the structures were all of my own making. It was also the first time I was introduced as 'Daniel' rather than 'the guy who can do weird stuff in his head'. It was such a pleasant relief." Later, he returned home to live with his parents, and found work as a maths tutor.
He met the great love of his life, a software engineer called Neil, online. It began, as these things do, with emailed pictures, but ended up with a face-to-face meeting. "Because I can't drive, Neil offered to pick me up at my parents' house, and drive me back to his house in Kent. He was silent all the way back. I thought, 'Oh dear, this isn't going well'. Just before we got to his house, he stopped the car. He reached over and pulled out a bouquet of flowers. I only found out later that he was quiet because he likes to concentrate when he's driving."
Neil is shy, like Tammet. They live, happily, on a quiet cul-de-sac. The only aspect of Tammet's autism that causes them problems is his lack of empathy. "There's a saying in Judaism, if somebody has a relative who has hanged themselves, don't ask them where you should hang your coat. I need to remember that. Like the time I kept quizzing a friend of Neil's who had just lost her mother. I was asking her all these questions about faith and death. But that's down to my condition - no taboos."
When he isn't working, Tammet likes to hang out with his friends on the church quiz team. His knowledge of popular culture lets him down, but he's a shoo-in when it comes to the maths questions. "I do love numbers," he says. "It isn't only an intellectual or aloof thing that I do. I really feel that there is an emotional attachment, a caring for numbers. I think this is a human thing - in the same way that a poet humanises a river or a tree through metaphor, my world gives me a sense of numbers as personal. It sounds silly, but numbers are my friends."
Sunday, April 13, 2008
Stephen Wiltshire The Human Camera;Autistic Savant
Stephen Wiltshire was born in London to West Indian parents on 24th April, 1974. His mother, Geneva Wiltshire had come from St Lucia and his father, Colvin, from Barbados. Colvin was killed in a motorcycle accident when Stephen was three years of age. His sister, Annette, is two years older than her brother. He lives with his mother in West London.
As a child, Stephen was mute and did not relate to other human beings. Aged three, he was diagnosed as autistic. He had no language, uncontrolled tantrums and lived entirely in his own world.
At the age of five, Stephen was sent to Queensmill School in London, a school for children with special needs, where it was noticed that the only pastime he enjoyed was drawing. It soon became apparent he communicated with the world through the language of drawing; first animals, then London buses, and finally buildings. These drawings show a masterful perspective, a whimsical line and reveal a natural innate artistry.
Aged eight, Stephen started drawing cityscapes after the effects of an earthquake (all imaginary) as a result of being shown photographs of earthquakes in a book at school. He also became obsessed with cars and illustrations of cars at this time (his knowledge of them is encyclopaedic) and he drew most of the major London landmarks.
The teachers at Queensmill School encouraged him to speak by temporarily taking away his art supplies so that he would be forced to ask for them. Stephen responded by making sounds and eventually uttered his first word - "paper." He learned to speak fully at the age of nine.
In 1987, the BBC QED programme, 'The Foolish Wise Ones', featured Stephen's astounding talent. The programme was devoted to three autistic savants: musical, mathematical and artistic. Stephen was introduced by Sir Hugh Casson (past president of the Royal Academy), who described him as "the best child artist in Britain". Stephen's work has since been the subject of numerous television programmes around the world, and the writer and psychologist, Oliver Sacks, has devoted an essay to Stephen in his book An Anthropologist On Mars (Picador 1995). Stephen is the only artistic autistic savant in the world whose work has been recorded and published since his childhood. His third book - Floating Cities (Michael Joseph, 1991) - was number one on the Sunday Times bestseller list.
Meanwhile, Stephen's artworks were being exhibited frequently in venues all over the world. In 2001 he appeared in another BBC documentary, Fragments of Genius, for which he was filmed flying over London aboard a helicopter and subsequently completing a detailed and perfectly scaled aerial illustration of a four-square-mile area within three hours; his drawing included 12 historic landmarks and 200 other structures.
In October and November 2003, thousands flocked to the Orleans House gallery in Twickenham near London, England, to see the first major retrospective of Stephen's work. The exhibition covered the 20-year period, from 1983 to 2003, and comprised 150 examples of Stephen's drawings, paintings and prints.
In May 2005 following a short helicopter ride over Tokyo he drew a stunningly detailed panoramic view of the city on a 10-meter-long canvas. Since then he has drawn Rome, Hong Kong, Frankfurt, Madrid and London on giant canvasses.
In January 2006 it was announced that Stephen was being named by Queen Elizabeth II as a Member of the Order of the British Empire, in recognition of his services to the art world. (No specific mention of his disability was made in the citation) Later that year he opened his permanent gallery at the Royal Opera Arcade, London.
This is Stephen Wiltshire's website..http://www.stephenwiltshire.co.uk/drawings.aspx
Autistic Artist Quickly Creates Perfect Replications of Panoramic Landscapes
Person of the Week: Stephen Wiltshire
By NICK WATT ABC NEWS
People tell artist Stephen Wiltshire that his work is brilliant. Today, he is drawing a panoramic view of Madrid in painstaking detail, penned entirely from memory after a 30-minute helicopter ride across the city.
Memorizing minute details is easy for him. Verbal communication is not. Wiltshire is autistic, and his first words came when he was 5 years old. "I said, I want paper," he recalled. "Please, can I have a paper, please, to draw?"
ABC News visited the London gallery where Wiltshire's cityscapes sell for thousands of dollars.
He drew St. Mark's Square, in Venice, and Los Angeles from memory. He also recreated four square miles of London — that's 200 buildings. The scale and perspective of his work is perfect.
"I think it's easy," he said. "My favorite is that New York subway passing ... from the New York skyline."
Wiltshire has only visited New York City three times, yet remembers it vividly. The buildings, the cabs and the lights on Broadway.
"New York is my favorite city," Wiltshire said.
At age 12, he was featured in a BBC documentary "Fragments of Genius," in which he drew an ornate London train station from memory. Fame followed, as did trips overseas, adulation and disbelief.
ABC News gave Wiltshire a relatively easy task: 10 minutes at Piccadilly Circus. Then, he was asked to draw it from memory. It took him just a little over an hour.
"There we have it," he said. "It's done now."
The result? Practically perfect.
By NICK WATT ABC NEWS
People tell artist Stephen Wiltshire that his work is brilliant. Today, he is drawing a panoramic view of Madrid in painstaking detail, penned entirely from memory after a 30-minute helicopter ride across the city.
Memorizing minute details is easy for him. Verbal communication is not. Wiltshire is autistic, and his first words came when he was 5 years old. "I said, I want paper," he recalled. "Please, can I have a paper, please, to draw?"
ABC News visited the London gallery where Wiltshire's cityscapes sell for thousands of dollars.
He drew St. Mark's Square, in Venice, and Los Angeles from memory. He also recreated four square miles of London — that's 200 buildings. The scale and perspective of his work is perfect.
"I think it's easy," he said. "My favorite is that New York subway passing ... from the New York skyline."
Wiltshire has only visited New York City three times, yet remembers it vividly. The buildings, the cabs and the lights on Broadway.
"New York is my favorite city," Wiltshire said.
At age 12, he was featured in a BBC documentary "Fragments of Genius," in which he drew an ornate London train station from memory. Fame followed, as did trips overseas, adulation and disbelief.
ABC News gave Wiltshire a relatively easy task: 10 minutes at Piccadilly Circus. Then, he was asked to draw it from memory. It took him just a little over an hour.
"There we have it," he said. "It's done now."
The result? Practically perfect.
Friday, April 11, 2008
Derek Paravicini - A Talent and Love for Music
Derek, now in his early twenties, was born premature, at 25 weeks, and weighing just over half a kilogram. As a result of the oxygen therapy required to save his life, Derek lost his sight, and his development was affected too. It later became apparent that he had severe learning difficulties. However, he soon acquired a fascination for music and sound, and, by the age of four, had taught himself to play a large number of pieces on the piano, of some melodic and harmonic complexity (such as 'Smoke Gets in your Eyes'). Almost inevitably, with no visual models to guide him, his technique was chaotic, and he his elbows would frequently be pressed into service, as he strove to reach intervals beyond the span of his tiny hands!
At this time, his enormous potential was recognised by Adam Ockelford, then music teacher at Linden Lodge School for the Blind in London. In due course, weekly and then daily lessons were arranged, in an extensive programme of tuition that was to last for several years. Painstakingly (though physical demonstration and imitation) Derek acquired the foundations of technique that were necessary for him to move forward. His natural affinity for jazz, pop and light music soon became evident; together with his improvisatory talents, ability to play in any key, and flair for performing in public!
Derek's first major concert was at the Barbican Halls in London, when he was just 9 (in 1989). He played jazz with the Royal Philharmonic Pops Orchestra. Numerous national and regional television appearances followed, in the UK and overseas. His increasing maturity both as a person and performer enabled him to give concerts in venues across England and in Europe; among them, Ronnie Scott's renowned jazz club in London.
Today, Derek is a student at Redhill College in Surrey, England, run by the Royal National Institute of the Blind. He attends courses at 'SoundScape' — a unique performing arts centre for young adults with learning difficulties and exceptional musical abilities or needs. His talent, love of music, and — above all — the ability to communicate through sound means he will continue to thrill audiences for years to come in the UK and abroad. Doctor Ockelford can be reached at Adam.
Derek Paravicini now has his own Web site. The site gives more biographical information about Derek along with a summary of his recent concert appearances and media productions about him. Both a CD of his works and a book about him will be released later this year.
His Web site is www.derekparavicini.net
At this time, his enormous potential was recognised by Adam Ockelford, then music teacher at Linden Lodge School for the Blind in London. In due course, weekly and then daily lessons were arranged, in an extensive programme of tuition that was to last for several years. Painstakingly (though physical demonstration and imitation) Derek acquired the foundations of technique that were necessary for him to move forward. His natural affinity for jazz, pop and light music soon became evident; together with his improvisatory talents, ability to play in any key, and flair for performing in public!
Derek's first major concert was at the Barbican Halls in London, when he was just 9 (in 1989). He played jazz with the Royal Philharmonic Pops Orchestra. Numerous national and regional television appearances followed, in the UK and overseas. His increasing maturity both as a person and performer enabled him to give concerts in venues across England and in Europe; among them, Ronnie Scott's renowned jazz club in London.
Today, Derek is a student at Redhill College in Surrey, England, run by the Royal National Institute of the Blind. He attends courses at 'SoundScape' — a unique performing arts centre for young adults with learning difficulties and exceptional musical abilities or needs. His talent, love of music, and — above all — the ability to communicate through sound means he will continue to thrill audiences for years to come in the UK and abroad. Doctor Ockelford can be reached at Adam.
Derek Paravicini now has his own Web site. The site gives more biographical information about Derek along with a summary of his recent concert appearances and media productions about him. Both a CD of his works and a book about him will be released later this year.
His Web site is www.derekparavicini.net
Autistic Children Show Outstanding Musical Skills
Specialist individual music lessons could hugely benefit children with autism, according to researchers Dr Pamela Heaton and Dr Francesca Happe at the University of London.
The study, which was funded by ESRC, suggests that many children with this disorder have outstanding abilities in tone recognition. "A lot of work has been done on musical savants with exceptional musical memory and rarely found absolute pitch ability" says Dr Pamela Heaton who led the research. "But our research shows that even children without these special talents and no musical training can have highly developed musical 'splinter skills'. If we could develop effective non-verbal music teaching methods, we might be able to understand more about the way these children learn and process other information." A series of music workshops in which children with autism will be taught to read musical notation are currently being planned.
The research compared the skills of six to 19 year old individuals with autism, and a control group with matching age, IQ and level of musical background, on a series of tasks into tone memory and discrimination. Using a touch-screen laptop computer, they were asked to identify musical notes by moving the image of a boy up and down a flight of stairs.
Although the children with autism had the communication difficulties associated with this disorder, a sub-group of them produced exceptional results. In one of the tests four children from the autism group achieved a score of 89 per cent compared to an average score of 30 per cent. "These findings were surprising, especially given that two of these children had intellectual impairment and none had experienced musical training. Autistic children can be highly analytical listeners and are able to access musical details more readily than typically developing children," says Pamela Heaton, who worked as a musician before gaining a doctorate in psychology".
The study, which was funded by ESRC, suggests that many children with this disorder have outstanding abilities in tone recognition. "A lot of work has been done on musical savants with exceptional musical memory and rarely found absolute pitch ability" says Dr Pamela Heaton who led the research. "But our research shows that even children without these special talents and no musical training can have highly developed musical 'splinter skills'. If we could develop effective non-verbal music teaching methods, we might be able to understand more about the way these children learn and process other information." A series of music workshops in which children with autism will be taught to read musical notation are currently being planned.
The research compared the skills of six to 19 year old individuals with autism, and a control group with matching age, IQ and level of musical background, on a series of tasks into tone memory and discrimination. Using a touch-screen laptop computer, they were asked to identify musical notes by moving the image of a boy up and down a flight of stairs.
Although the children with autism had the communication difficulties associated with this disorder, a sub-group of them produced exceptional results. In one of the tests four children from the autism group achieved a score of 89 per cent compared to an average score of 30 per cent. "These findings were surprising, especially given that two of these children had intellectual impairment and none had experienced musical training. Autistic children can be highly analytical listeners and are able to access musical details more readily than typically developing children," says Pamela Heaton, who worked as a musician before gaining a doctorate in psychology".
Saturday, March 29, 2008
Tito Writings
"One day I dream that we can grow in a matured society where nobody would be 'normal or abnormal' but just human beings, accepting any other human being- ready to grow together."
- Tito Rajarshi Mukhopadhyay, in The Mind Tree, Arcade Publishing, 2003© National Autistic Society
Once in a great while, a special person emerges in the history of science and medicine whose unique set of characteristics sheds light on an entire disorder and sometimes even on the mysteries of the human brain. Tito is such a person. Although he has severe autism and is nearly nonverbal, his ability to communicate through his extraordinary writing is astonishing.
Tito communicates eloquently through his writing and he has gained national recognition for his poetry. He has published his book of memoirs and poems, and plans to pursue a career as a professional writer.
Early Writings
The Mind Tree
(from the Mind Tree, Arcade Publishing, 2003, National Autistic Society)
Maybe it is night
Maybe it is day
I can?t be sure
Because I?m not yet feeling the heat of the sun
I am the mind tree
When I had been gifted this mind of mine
I recall his voice very clearly
To you I have given this mind
And you shall be the only kind
No one ever will like you be
And I name you the mind tree
I can?t see or talk
Yet I can imagine
I can hope and I can expect
I am able to feel pain but I cannot cry
So I just be and wait for the pain to subside
I can do nothing but wait
My concerns and worries
Are trapped within me somewhere in my depths
Maybe in my roots
Maybe in my bark
When he comes next who gifted me my mind
I shall ask him for the gift of sight
I doubt his return and
Yet hope for it
Maybe he will
Maybe he will not
Poem 1 listen to this poem
(from "Tito's Story", a video documentary by the BBC, April 2000)
Men and women are puzzled by everything I do
Doctors use different terminologies to describe me
I just wonder
The thoughts are bigger than I can express
Every move that I make shows how trapped I feel
Under the continuous flow of happenings
The effect of a cause becomes the cause of another effect
And I wonder
I think about the times when I change the environment around me
With the help of my imagination
I can go places that do not exist
And they are like beautiful dreams.
But it is a world full of improbabilities
Racing toward uncertainty
Poem 4 listen to this poem
(from "Tito's Story", a video documentary by the BBC, April 2000)
When you are trying to think blue
And end up thinking black
You can be sure to be frustrated
Time and again it happens to me
And I get quite helpless
Otherwise why should I get up and spin myself
Spinning my body
Brings some sort of harmony to my thoughts
So that I can centrifuge away all of the black thoughts
I realise that the faster I spin
The faster I drive away the black
When I am sure that even the last speck of black
Has gone away from me
Then I spin back in the opposite direction
And pull the blue thoughts into myself
It depends on how much blue I want
If I want more blue I have to spin faster
Otherwise not so fast
It's just like being a fan
The trouble is when I stop spinning
My body scatters
And it's so difficult to collect it together again
Recent writings
The Door Hinge
I was playing with the door hinge since early noon today. I knew nothing could stop me from playing.
They had all given up trying. They had requested me at first and then they had tried to pull me out.
Nothing stopped me.
Not even the two pm strike of the clock.
Not even the rain.
It had started raining since noon. The window brought in all that cool air that had been waiting to come in, and all the damp smell of wet earth inside the room. I am sure the hinge on the door with which I was playing could smell it too.
It never tells me anything. But I somehow know that it can sense every thing I sense.
It sensed the orange colour spreading with the two pm strike of clock as it filled up the room.
Every time the clock strikes two, both of us get prepared.
We get prepared for the orange light to come to us from the clock. The orange light joins us in our secret game.
The door hinge senses the gradual spreading of the orange colour through the mirror till every thing in the room is coloured with orange.
The green frame of the mirror gets the orange colour before any thing else. After that, the white walls begin to turn orange. Only then can the window and everything outside the window get to colour themselves with orange. Every one needs to wait for our turns to be coloured with orange light.
The door hinge can understand everything.
But now the door hinge was sticky.
The door hinge becomes sort of sticky whenever it knows that it is raining. I doubt whether it really likes the rain. It is fond of the wind. I can just guess that.
I have seen it slamming with joy when there is wind.
I guess that the door hinge tried to gather the orange colour of the two pm afternoon although the damp air prevented the colour from diffusing it completely because the grey colour of the rain was too strong for the orange to spread evenly as it does every day.
I saw the colours trying to gain strength. Sometimes it seemed as though the grey would empower the orange.
The war grew in width and depth inside my room and outside the window. I felt my breaths inhaling and exhaling the colours and felt the battle within me.
I knew the door hinge was getting alarmed.
I heard it creek. It was trying to warn the clock about the colour battle.
I had banged the door hard for my part so that the out side grey of the rain could be warned. I wanted to shout. But I could only shout through the slam of the door.
The colours had understood the cause.
They stopped their little war.
I saw the rain drops getting coloured with orange.
The door hinge had stopped the creek.
- Tito Rajarshi Mukhopadhyay, in The Mind Tree, Arcade Publishing, 2003© National Autistic Society
Once in a great while, a special person emerges in the history of science and medicine whose unique set of characteristics sheds light on an entire disorder and sometimes even on the mysteries of the human brain. Tito is such a person. Although he has severe autism and is nearly nonverbal, his ability to communicate through his extraordinary writing is astonishing.
Tito communicates eloquently through his writing and he has gained national recognition for his poetry. He has published his book of memoirs and poems, and plans to pursue a career as a professional writer.
Early Writings
The Mind Tree
(from the Mind Tree, Arcade Publishing, 2003, National Autistic Society)
Maybe it is night
Maybe it is day
I can?t be sure
Because I?m not yet feeling the heat of the sun
I am the mind tree
When I had been gifted this mind of mine
I recall his voice very clearly
To you I have given this mind
And you shall be the only kind
No one ever will like you be
And I name you the mind tree
I can?t see or talk
Yet I can imagine
I can hope and I can expect
I am able to feel pain but I cannot cry
So I just be and wait for the pain to subside
I can do nothing but wait
My concerns and worries
Are trapped within me somewhere in my depths
Maybe in my roots
Maybe in my bark
When he comes next who gifted me my mind
I shall ask him for the gift of sight
I doubt his return and
Yet hope for it
Maybe he will
Maybe he will not
Poem 1 listen to this poem
(from "Tito's Story", a video documentary by the BBC, April 2000)
Men and women are puzzled by everything I do
Doctors use different terminologies to describe me
I just wonder
The thoughts are bigger than I can express
Every move that I make shows how trapped I feel
Under the continuous flow of happenings
The effect of a cause becomes the cause of another effect
And I wonder
I think about the times when I change the environment around me
With the help of my imagination
I can go places that do not exist
And they are like beautiful dreams.
But it is a world full of improbabilities
Racing toward uncertainty
Poem 4 listen to this poem
(from "Tito's Story", a video documentary by the BBC, April 2000)
When you are trying to think blue
And end up thinking black
You can be sure to be frustrated
Time and again it happens to me
And I get quite helpless
Otherwise why should I get up and spin myself
Spinning my body
Brings some sort of harmony to my thoughts
So that I can centrifuge away all of the black thoughts
I realise that the faster I spin
The faster I drive away the black
When I am sure that even the last speck of black
Has gone away from me
Then I spin back in the opposite direction
And pull the blue thoughts into myself
It depends on how much blue I want
If I want more blue I have to spin faster
Otherwise not so fast
It's just like being a fan
The trouble is when I stop spinning
My body scatters
And it's so difficult to collect it together again
Recent writings
The Door Hinge
I was playing with the door hinge since early noon today. I knew nothing could stop me from playing.
They had all given up trying. They had requested me at first and then they had tried to pull me out.
Nothing stopped me.
Not even the two pm strike of the clock.
Not even the rain.
It had started raining since noon. The window brought in all that cool air that had been waiting to come in, and all the damp smell of wet earth inside the room. I am sure the hinge on the door with which I was playing could smell it too.
It never tells me anything. But I somehow know that it can sense every thing I sense.
It sensed the orange colour spreading with the two pm strike of clock as it filled up the room.
Every time the clock strikes two, both of us get prepared.
We get prepared for the orange light to come to us from the clock. The orange light joins us in our secret game.
The door hinge senses the gradual spreading of the orange colour through the mirror till every thing in the room is coloured with orange.
The green frame of the mirror gets the orange colour before any thing else. After that, the white walls begin to turn orange. Only then can the window and everything outside the window get to colour themselves with orange. Every one needs to wait for our turns to be coloured with orange light.
The door hinge can understand everything.
But now the door hinge was sticky.
The door hinge becomes sort of sticky whenever it knows that it is raining. I doubt whether it really likes the rain. It is fond of the wind. I can just guess that.
I have seen it slamming with joy when there is wind.
I guess that the door hinge tried to gather the orange colour of the two pm afternoon although the damp air prevented the colour from diffusing it completely because the grey colour of the rain was too strong for the orange to spread evenly as it does every day.
I saw the colours trying to gain strength. Sometimes it seemed as though the grey would empower the orange.
The war grew in width and depth inside my room and outside the window. I felt my breaths inhaling and exhaling the colours and felt the battle within me.
I knew the door hinge was getting alarmed.
I heard it creek. It was trying to warn the clock about the colour battle.
I had banged the door hard for my part so that the out side grey of the rain could be warned. I wanted to shout. But I could only shout through the slam of the door.
The colours had understood the cause.
They stopped their little war.
I saw the rain drops getting coloured with orange.
The door hinge had stopped the creek.
Wednesday, February 13, 2008
Thristan "Tum-Tum" Mendoza - A Child Prodigy Marimbist With Autism from the Philippines
By Darold Treffert, MD
--------------------------------------------------------------------------------
Thristan Mendoza, or "Tum-Tum" as he is fondly called, is an internationally-recognized marimba virtuoso. He was diagnosed with autism at age 2 1/2. With inborn perfect pitch, he learned to play the marimba at age 5. Born in 1989 in Quezon City, Philippines, he is now a 6th grader in the regular curriculum at a traditional school, the O.B. Montessori Center. He also did excel in the Japanese Kumon method of mathematics but had to be withdrawn from Kumon to shift his concentration to other subjects as he was far ahead of his other classmates in his math abilities.
Tum-Tum has earned numerous national and international awards for his prodigious musical ability with the marimba. In 1997 the University of the Philippines, through its President's Committee on Culture and the Arts, presented him as a gifted child prodigy, the youngest ever featured so far and still the only special child. He is the only 2-time grand prize awardee of the McDonalds Philippines Makabata Award and in two different categories. In May of 2000 he received the Millennium Dreamer's Award given by the Walt Disney Company, McDonalds Corporation and the UNESCO in Orlando. Florida to honor children from 8-15 years of age from around the world who have made a positive impact in their respective communities by providing an inspiration to youth. In March, 2001 Very Special Arts presented Tum-Tum with the Rosemary Kennedy International Young Soloist Award and he was invited to perform at the John F. Kennedy Center for the Performing Arts in Washington, D.C.
One news account describes Tum-Tum as having "been born with a pair of sticks in his hands." Another commented "music paved the way for him to break free of his shell." The editor of Mother's Magazine, Ms. Gigi Padilla, described her thoughts thus: "When I first heard Tum Tum Mendoza play his marimba, time stood still. All my thoughts stopped and he just absorbed my attention completely. I marveled at how this child, whose parents were told not to expect anything from him, has now accomplished much more than any of us have."
Since he could already read and write, Tum-Tum was enrolled at the Philippine Montessori center at age 2 1/2. However because he was not mingling with the other children but would only play by himself, with no eye contact, and also showed significant hyperactivity, the school suggested a psychological assessment and a diagnosis of autism was made. His mother recalls: "The signs suddenly fell into place. He hated video lights and any form of the shade of red. He could not tolerate the sound of electric drills and food grinders. A loner, he needed a lot of prodding before he would play or interact with others. He did not like looking at the mirror, saying he was too shy to do so. He uttered certain words again and again." Also noted was a fascination with spinning objects such as electric fans and bicycle wheels.
The same year as he was diagnosed with autism, Tum Tum made his first musical appearance playing three different musical instruments — drums, cymbals and temple block — all at the same time. He later performed as a lead musician with the metalophone as his instrument during a World Youth Day celebration. He then took up the marimba and, after only four months, was a special guest artist of the Philippine Madrigal Singers in a concert on the main stage of the Theater of the Cultural Center of the Philippines. By age 10 he was a veteran of 120 shows with intrumentalist/composers, percussion virtuosos and harpists from around the world.
At the O.B. Montessori Center in the Philippines, Tum Tum is a consistent honor student. Psychological testing shows a Verbal IQ in the average (100-110) range with performance IQ in the high average to Superior range (118-131). This discrepancy between verbal and performance scores shows best abilities on tasks that do not rely on verbal elaboration of concepts or percepts. Academic Achievement for highly structured tasks such as spelling and math range from the Junior to Senior High School level; reading skills are at about grade level. Language deficits in terms of language processing remain. Social skills are the main deficit. The most recent evaluation applies a diagnosis of Autistic Disorder.
Tum-Tum is looking forward to the release of his first CD/cassette album soon. Proceeds from the album will be donated to a special educational fund of the Autism Society of the Philippines for the benefit of indigent families who cannot afford educational intervention and other therapies for their special children. Using his remarkable musical talent, Tum-Tum, with the effort, support and encouragement of his dedicated, and grateful family, has done much to raise awareness about autism in the Philippines, and now internationally, donating countless hours to fund raising activities for the Autism Society of the Philippines and other organizations for the handicapped.
As with other prodigious savants, Tum-Tum's extraordinary ability has served as a conduit toward normalization for him through the unique, flexible and innovative educational approach used in conjunction with the other therapies provided him as well. There have been continuous gains in language and social skills. Meanwhile his special musical gifts have not diminished. They continue to grow and excel. There has been no trade off of special skills for gains in other areas of daily functioning. Instead, both have prospered.
Thristen Mendoza's remarkable progress raises important questions that other prodigious savants present as well. What is the best educational approach for these special persons? Should the artificial distinction be maintained, as it is in some programs, between the "gifted and talented" non-disabled children and the "disabled gifted", such as the savant? Is it possible, and what benefits accrue, to both specially gifted groups when they are combined, rather than separated, in the classroom setting? Tum Tum is a sparkling example of the benefits of "mainstreaming" him, as it were, in a group of other gifted and talented children without artificially separating the disabled from the non-disabled. His special musical talent cuts across and through any such 'disability' boundaries to the benefit not only of Tum Tum, but to the benefit of his classmates and the rest of us as well. Tum Tum's experience and growth challenges us to look closely at these vital educational questions for the savant without the typical stereotypes, classifications and categories that have been too arbitrary, too limiting and too confining. That reevaluation is underway in a number of centers and locales.
Meanwhile Tum Tum Mendoza shares his remarkable musical gift with the whole world, literally, around him. Additional information about Tum Tum is available through his parents, Belina and Victor Mendoza, who can be contacted at vlm143@i-manila.com.ph.
--------------------------------------------------------------------------------
Thristan Mendoza, or "Tum-Tum" as he is fondly called, is an internationally-recognized marimba virtuoso. He was diagnosed with autism at age 2 1/2. With inborn perfect pitch, he learned to play the marimba at age 5. Born in 1989 in Quezon City, Philippines, he is now a 6th grader in the regular curriculum at a traditional school, the O.B. Montessori Center. He also did excel in the Japanese Kumon method of mathematics but had to be withdrawn from Kumon to shift his concentration to other subjects as he was far ahead of his other classmates in his math abilities.
Tum-Tum has earned numerous national and international awards for his prodigious musical ability with the marimba. In 1997 the University of the Philippines, through its President's Committee on Culture and the Arts, presented him as a gifted child prodigy, the youngest ever featured so far and still the only special child. He is the only 2-time grand prize awardee of the McDonalds Philippines Makabata Award and in two different categories. In May of 2000 he received the Millennium Dreamer's Award given by the Walt Disney Company, McDonalds Corporation and the UNESCO in Orlando. Florida to honor children from 8-15 years of age from around the world who have made a positive impact in their respective communities by providing an inspiration to youth. In March, 2001 Very Special Arts presented Tum-Tum with the Rosemary Kennedy International Young Soloist Award and he was invited to perform at the John F. Kennedy Center for the Performing Arts in Washington, D.C.
One news account describes Tum-Tum as having "been born with a pair of sticks in his hands." Another commented "music paved the way for him to break free of his shell." The editor of Mother's Magazine, Ms. Gigi Padilla, described her thoughts thus: "When I first heard Tum Tum Mendoza play his marimba, time stood still. All my thoughts stopped and he just absorbed my attention completely. I marveled at how this child, whose parents were told not to expect anything from him, has now accomplished much more than any of us have."
Since he could already read and write, Tum-Tum was enrolled at the Philippine Montessori center at age 2 1/2. However because he was not mingling with the other children but would only play by himself, with no eye contact, and also showed significant hyperactivity, the school suggested a psychological assessment and a diagnosis of autism was made. His mother recalls: "The signs suddenly fell into place. He hated video lights and any form of the shade of red. He could not tolerate the sound of electric drills and food grinders. A loner, he needed a lot of prodding before he would play or interact with others. He did not like looking at the mirror, saying he was too shy to do so. He uttered certain words again and again." Also noted was a fascination with spinning objects such as electric fans and bicycle wheels.
The same year as he was diagnosed with autism, Tum Tum made his first musical appearance playing three different musical instruments — drums, cymbals and temple block — all at the same time. He later performed as a lead musician with the metalophone as his instrument during a World Youth Day celebration. He then took up the marimba and, after only four months, was a special guest artist of the Philippine Madrigal Singers in a concert on the main stage of the Theater of the Cultural Center of the Philippines. By age 10 he was a veteran of 120 shows with intrumentalist/composers, percussion virtuosos and harpists from around the world.
At the O.B. Montessori Center in the Philippines, Tum Tum is a consistent honor student. Psychological testing shows a Verbal IQ in the average (100-110) range with performance IQ in the high average to Superior range (118-131). This discrepancy between verbal and performance scores shows best abilities on tasks that do not rely on verbal elaboration of concepts or percepts. Academic Achievement for highly structured tasks such as spelling and math range from the Junior to Senior High School level; reading skills are at about grade level. Language deficits in terms of language processing remain. Social skills are the main deficit. The most recent evaluation applies a diagnosis of Autistic Disorder.
Tum-Tum is looking forward to the release of his first CD/cassette album soon. Proceeds from the album will be donated to a special educational fund of the Autism Society of the Philippines for the benefit of indigent families who cannot afford educational intervention and other therapies for their special children. Using his remarkable musical talent, Tum-Tum, with the effort, support and encouragement of his dedicated, and grateful family, has done much to raise awareness about autism in the Philippines, and now internationally, donating countless hours to fund raising activities for the Autism Society of the Philippines and other organizations for the handicapped.
As with other prodigious savants, Tum-Tum's extraordinary ability has served as a conduit toward normalization for him through the unique, flexible and innovative educational approach used in conjunction with the other therapies provided him as well. There have been continuous gains in language and social skills. Meanwhile his special musical gifts have not diminished. They continue to grow and excel. There has been no trade off of special skills for gains in other areas of daily functioning. Instead, both have prospered.
Thristen Mendoza's remarkable progress raises important questions that other prodigious savants present as well. What is the best educational approach for these special persons? Should the artificial distinction be maintained, as it is in some programs, between the "gifted and talented" non-disabled children and the "disabled gifted", such as the savant? Is it possible, and what benefits accrue, to both specially gifted groups when they are combined, rather than separated, in the classroom setting? Tum Tum is a sparkling example of the benefits of "mainstreaming" him, as it were, in a group of other gifted and talented children without artificially separating the disabled from the non-disabled. His special musical talent cuts across and through any such 'disability' boundaries to the benefit not only of Tum Tum, but to the benefit of his classmates and the rest of us as well. Tum Tum's experience and growth challenges us to look closely at these vital educational questions for the savant without the typical stereotypes, classifications and categories that have been too arbitrary, too limiting and too confining. That reevaluation is underway in a number of centers and locales.
Meanwhile Tum Tum Mendoza shares his remarkable musical gift with the whole world, literally, around him. Additional information about Tum Tum is available through his parents, Belina and Victor Mendoza, who can be contacted at vlm143@i-manila.com.ph.
Monday, December 17, 2007
Living with Asperger's
For a 10-year-old, Jake Hayes is very clear about what he wants to be when he grows up.
"I want to be a paleontologist for a museum," said Jake, whose room does not hide his fascination.
Shelves are covered with prehistoric creatures, mystical dragons and Godzilla, which Jake explains is a mutated reptile. Where there aren't creatures, there are books.
But Jake's not going to work in anybody's museum — he'll work in his own.
That Jake knows he wants to work for himself is just a tiny hint of his disorder. There were others when he was growing up that, when strung together, began to spell out Asperger's syndrome.
"Even when he was a baby, he would sit alone and play contently by himself," Colleen LaBorde, said of her son who was diagnosed with Asperger's at age 5. "He didn't have any marked developmental delays; his gross motor was a little delayed, but there was nothing that would set us off."
Asperger's syndrome is one of the autism spectrum disorders. Children with Asperger's typically have normal or above-normal IQs but struggle with social aspects of language and nonverbal communication, according to diagnostic criteria for the disorder.
The disorder is also marked by intense preoccupation around one or more patterns of interest.
That was evident very early on with Jake.
"When he was about 3, he memorized his favorite dinosaur book almost verbatim. He'd have sentences memorized before he knew what the words meant," LaBorde said. "If you asked him a question about a dinosaur, he could tell you these amazing facts."
In preschool, other characteristics became more pronounced.
"The teacher was worried because he would ask for the dinosaur book and go sit in a corner by himself," LaBorde said.
In kindergarten, the behavior got worse. Her son was ritualistic, protective of his toys and obsessive about certain things.
"He won't wear anything with a hole in it, not even a sock. I was at the school every day because of his behavior. He wouldn't sit still, and he'd poke himself and other students."
Every possible reason for his behavior — cerebral palsy, attention deficit hyperactivity disorder, Tourette syndrome, among others — was offered up.
Nobody mentioned it might be autism until a Caddo school occupational therapist saw Jake.
"A therapist and my pediatrician thought the idea was absurd," LaBorde said. "I finally got a diagnosis from a pediatric neurologist."
She had to clear another hurdle when she began looking for resources.
"Nobody I went to knew enough about Asperger's to help. I was ready to leave the area to look for help when I found The Center for Therapy in Shreveport," said LaBorde. "That's made the biggest difference. It's really helped our family with so much more understanding (of the disorder.)"
Frustration has been turned into knowledge to help Jake work through the areas of life with which he has trouble. For example, he struggles with math, and his ability to focus can be a problem.
It's also difficult for Jake to understand what's appropriate behavior in social situations.
"You also have to be very literal when you talk to him," LaBorde said. "He doesn't understand sarcasm or little white lies."
She knows that with Jake's seemingly brilliant mind, he could have gone even longer without a diagnosis. That scares her, not only for her son, but for other families who might be seeking answers.
"If you catch it early, you can do a lot to help them improve their life," LaBorde said. "But there needs to be more trained professionals in the school system (who) can catch these children, because that's where it shows up."
"I want to be a paleontologist for a museum," said Jake, whose room does not hide his fascination.
Shelves are covered with prehistoric creatures, mystical dragons and Godzilla, which Jake explains is a mutated reptile. Where there aren't creatures, there are books.
But Jake's not going to work in anybody's museum — he'll work in his own.
That Jake knows he wants to work for himself is just a tiny hint of his disorder. There were others when he was growing up that, when strung together, began to spell out Asperger's syndrome.
"Even when he was a baby, he would sit alone and play contently by himself," Colleen LaBorde, said of her son who was diagnosed with Asperger's at age 5. "He didn't have any marked developmental delays; his gross motor was a little delayed, but there was nothing that would set us off."
Asperger's syndrome is one of the autism spectrum disorders. Children with Asperger's typically have normal or above-normal IQs but struggle with social aspects of language and nonverbal communication, according to diagnostic criteria for the disorder.
The disorder is also marked by intense preoccupation around one or more patterns of interest.
That was evident very early on with Jake.
"When he was about 3, he memorized his favorite dinosaur book almost verbatim. He'd have sentences memorized before he knew what the words meant," LaBorde said. "If you asked him a question about a dinosaur, he could tell you these amazing facts."
In preschool, other characteristics became more pronounced.
"The teacher was worried because he would ask for the dinosaur book and go sit in a corner by himself," LaBorde said.
In kindergarten, the behavior got worse. Her son was ritualistic, protective of his toys and obsessive about certain things.
"He won't wear anything with a hole in it, not even a sock. I was at the school every day because of his behavior. He wouldn't sit still, and he'd poke himself and other students."
Every possible reason for his behavior — cerebral palsy, attention deficit hyperactivity disorder, Tourette syndrome, among others — was offered up.
Nobody mentioned it might be autism until a Caddo school occupational therapist saw Jake.
"A therapist and my pediatrician thought the idea was absurd," LaBorde said. "I finally got a diagnosis from a pediatric neurologist."
She had to clear another hurdle when she began looking for resources.
"Nobody I went to knew enough about Asperger's to help. I was ready to leave the area to look for help when I found The Center for Therapy in Shreveport," said LaBorde. "That's made the biggest difference. It's really helped our family with so much more understanding (of the disorder.)"
Frustration has been turned into knowledge to help Jake work through the areas of life with which he has trouble. For example, he struggles with math, and his ability to focus can be a problem.
It's also difficult for Jake to understand what's appropriate behavior in social situations.
"You also have to be very literal when you talk to him," LaBorde said. "He doesn't understand sarcasm or little white lies."
She knows that with Jake's seemingly brilliant mind, he could have gone even longer without a diagnosis. That scares her, not only for her son, but for other families who might be seeking answers.
"If you catch it early, you can do a lot to help them improve their life," LaBorde said. "But there needs to be more trained professionals in the school system (who) can catch these children, because that's where it shows up."
Tuesday, December 11, 2007
Derek Paravicini The Musical Genius
Derek, now in his mid twenties, was born premature, at 25 weeks, and weighing just over half a kilogram. As a result of the oxygen therapy required to save his life, Derek lost his sight, and his development was affected too. It later became apparent that he had severe learning difficulties. However, he soon acquired a fascination for music and sound, and, by the age of four, had taught himself to play a large number of pieces on the piano, of some melodic and harmonic complexity (such as 'Smoke Gets in your Eyes'). Almost inevitably, with no visual models to guide him, his technique was chaotic, and even his elbows would frequently be pressed into service, as he strove to reach intervals beyond the span of his tiny hands!
At this time, his enormous potential was recognised by Adam Ockelford, then music teacher at Linden Lodge School for the Blind in London. In due course, weekly and then daily lessons were arranged, in an extensive programme of tuition that was to last for several years. Painstakingly (through physical demonstration and imitation) Derek acquired the foundations of technique that were necessary for him to move forward. His natural affinity for jazz, pop and light music soon became evident; together with his improvisatory talents, ability to play in any key, and flair for performing in public!
Derek's first major concert was at the Barbican Halls in London, when he was just 9 (in 1989). He played jazz with the Royal Philharmonic Pops Orchestra. Numerous national and regional television appearances followed, in the UK and overseas. His increasing maturity both as a person and performer enabled him to give concerts in venues across England and in Europe; among them, Ronnie Scott's renowned jazz club in London.
Today, Derek is a student at Redhill College in Surrey, England, run by the Royal National Institute of the Blind. He attends courses at 'SoundScape' - a unique performing arts centre for young adults with learning difficulties and exceptional musical abilities or needs. His talent, love of music, and - above all - the ability to communicate through sound means he will continue to thrill audiences for years to come in the UK and abroad.
At this time, his enormous potential was recognised by Adam Ockelford, then music teacher at Linden Lodge School for the Blind in London. In due course, weekly and then daily lessons were arranged, in an extensive programme of tuition that was to last for several years. Painstakingly (through physical demonstration and imitation) Derek acquired the foundations of technique that were necessary for him to move forward. His natural affinity for jazz, pop and light music soon became evident; together with his improvisatory talents, ability to play in any key, and flair for performing in public!
Derek's first major concert was at the Barbican Halls in London, when he was just 9 (in 1989). He played jazz with the Royal Philharmonic Pops Orchestra. Numerous national and regional television appearances followed, in the UK and overseas. His increasing maturity both as a person and performer enabled him to give concerts in venues across England and in Europe; among them, Ronnie Scott's renowned jazz club in London.
Today, Derek is a student at Redhill College in Surrey, England, run by the Royal National Institute of the Blind. He attends courses at 'SoundScape' - a unique performing arts centre for young adults with learning difficulties and exceptional musical abilities or needs. His talent, love of music, and - above all - the ability to communicate through sound means he will continue to thrill audiences for years to come in the UK and abroad.
Friday, November 2, 2007
Finding Your Inner Genius
Experiment Tries to Tap Brain's 'Savant' Qualities
Is this going to fry my brain?
That was one of the first questions I had for Dr. Allan Snyder when I visited his lab at the University of Sydney in Australia. I had gone there to participate in an experiment with mind-numbing potential. Literally.
Snyder peered over the circular lenses of his glasses and smiled. "In Australia we have very strong mental health guards before we're allowed to do this on anybody," he said. "And … I don't want to hurt you at all."
Tapping Into Genius-Like Abilities
In fact, I felt pretty safe knowing that Snyder himself and dozens of volunteers, including the famed neurologist Oliver Sacks, had gone through the same procedure — having magnetic pulses fired into targeted areas of their brains in an experiment designed to tap into the genius — like abilities that savants possess in art, music, and math.
The experiment actually inhibits some brain activity to afford — in its premise, at least — heightened access to the parts of our brains that collect raw information before the data is filtered into concepts.
"We have these severely brain-impaired people who are performing what seems ostensibly to be a miracle," Synder said, referring to the extraordinary powers displayed by savants who otherwise have difficulting coping with everyday life. "It must be something that's in us all, and we can't access. They can."
Amid the Gothic architecture of the University of Sydney in Australia, Snyder directs a place called The Centre for the Mind. Even in winter, the slightly-built American-born scientist begins each day with an Olympic-sized swim to get his own brain working, and he is a bit of an eccentric — some say a wizard.
But he has master's degrees from Harvard and M.I.T.; a Ph.D. from University College in London; is a winner of the prestigious Marconi International prize; and also has been named one of Australia's 10 most creative minds.
Before I underwent the experiment myself, I had some basic questions — especially, "How can a person heighten certain skills by by suppressing some brain activity instead of increasing it?" The simple answer to that is, our brains are always filtering information. Snyder wants to suppress that filtering process, so we can see things in a kind of raw state — as autistic savants do.
I've reported many stories where I witnessed the types of feats that Snyder is studying. In 1993, I met Kim Peek, a savant who was diagnosed as retarded, not autistic. Kim was one of the models for the savant that Dustin Hoffman played in the movie Rain Man. Despite an IQ measured at 69 and an inability to dress himself, he has read and remembered encyclopedic details and can execute astounding calculations in his head.
"Thursday," he replied instantly. "And this year it's Monday and you retire in 2010, likewise on a Monday."
Stephen Wiltshire, an autistic savant I met in 1991, became world famous for his books of architectural illustrations, even though he was walled off emotionally by his autism and had no conceptual appreciation of the buildings he could draw-accurately and beautifully — from memory.
"If I was born November 1, 1945, what day of the week was that?" a woman asked him in a group we were taping.
Savants' 'Hyper-Literal' Worldview
Here's the difference. We might appreciate a great architectural work as a masterpiece of human achievement, functioning, for example, as a center for art or commerce. To an autistic savant, Snyder says, the same building is essentially a collection of components and objects — raw data with no particular meaning.
"These are people who are hyper-literal," Snyder said. "They see the world, they see the shading, they see the details in this world that we bypass and we're never aware of. But of course, they pay often a heavy price for that. They don't have the concepts.
They don't have the meaning."
The question that Snyder studies is: can we unlock that same potential in our own brains without paying the price?
To conduct his experiments, he uses a technique called Transcranial Magnetic Stimulation, or TMS.
"I'm using artificial means, in this case magnetic pulses to create virtual lesions — artificial brain damage — in a way that I can switch it on and off and have you display savant skills," Snyder said.
The "artifical" damage isn't permanent. Snyder's technique has been safely applied medically to treat depression and schizophrenia by using the pulses to temporarily suppress activity in some areas of the brain.
Hindered by Our Own ‘Expertise’
My brain, typically, has developed prejudices of which I'm not aware, Snyder told me as we entered the small room where he conducts his experiments.
"You're blinded by your expertise. You know, you do something. It's routine. You have a way of thinking about something, and yet you've forgotten why. In a sense, we're very prejudiced."
To illustrate his point, Snyder directed me to read lines that came across the screen like flash cards.
I thought I was reading the lines perfectly. After all, that's part of my training as a broadcast reporter. But I was completely unaware of the detail that I was omitting.
In a number of the sentences, Snyder added additional words. For instance, there were two "the's" in the card that read: "When in Rome do as the the Romans do."
I never even registered the second "the," or the additional words that were planted on the other flash cards. My mind identified a familiar concept — in this case, a cliché — and filtered out what didn't fit.
That's one way in which our brains process information.
"Our awareness seems to be that of an executive," Snyder said. "We get the executive statement, the executive summary. We don't get the back room deliberations."
A savant like Kim Peek may not have understood the meaning of the cliché, but he probably would not have missed the extra words I overlooked because of the literal way in which he absorbs information. Psychiatrist Daniel Christensen of Salt Lake City showed me that one possible reason for the manner in which Kim retains detail is that Kim's brain is lacking an important tissue bridge called the corpus callosum, which links the right and left hemispheres of the brain. One of the functions of the corpus callosum is to filter raw information. Kim, it is estimated, retains 95 per cent of the raw information he reads in one sitting.
Improving Our Ability to Look at Raw Data
With his experiment, Snyder wanted to improve my ability to look at the raw data. When Snyder's assistant marked a target with a pen on my blue skullcap, it was used to aim the magnetic pulses at the left fronto-temporal lobe of my brain, where (among many other things) I form concepts.
Would I be able to identify raw details more clearly — or reproduce the photos he showed me with more accurate drawings — when it was over?
Synder says about 40 percent of his volunteer subjects show pronounced effects. "They say they're much more aware of the details around the room. One person said that he had never before wanted to write, but suddenly he now wants to write compositions. In other words he was able to see the world in a kind of descriptive way."
I didn't become a da Vinci, but I did produce typical and interesting results. When I drew a dog before the experiment, I used the same techniques I learned in elementary school — assembling patterns of circles and ovals to represent the body and its parts.
After the pulses, I drew a dog in free-form style, imposing a better sense of motion on the figure. I started by drawing tufts on its back and tail — not the outline patterns I had been taught — but I was unaware until I looked at the videotapes that I had changed my method.
When Snyder published the results of his long-term experiments (in the Journal of Integrative Neuroscience), he reported that that was how many of the participants had responded. Compared to the "before" drawings, the "after" drawings — following 10, and then 15 minutes of pulses — showed stylistic changes that sometimes were radically different.
"I think this is the best indicator of how people break away from their mindset," Snyder said.
Skeptics say this could simply be the result of practice or repetition — even with savants.
Snyder cites case studies where sudden brain damage has resulted in unusual change.
"There's another person we've worked with who got hit on the head with a baseball when he was 9 years old," Snyder said. "He became very quickly … a calendar calculator." (He was instantly able to associate days of the week with specific calendar dates). "How can this be due to practice?"
Snyder also cites a landmark study by Bruce Miller, now of the University of California at San Francisco. Dr. Miller found that some patients began having extraordinary creative impulses even as some areas of their brains were deteriorating because of disease. The areas that showed damage in brain scans controlled language and behavior — where we label things. And as those areas were disabled, the creative side of the brain — including the frontal temporal lobes — gained more influence.
The condition is called frontotemporal dementia, and through Miller, I met one of its victims, Jack Friedman. As the damage to his brain progressed, Friedman changed from a conservative businessman to a free-spirited artist whose whimsical works sold for hundred of dollars each at California galleries. At the same time, his ability to function in everyday life declined drastically.
Freeing Artistic Talents?
Another journalist who participated in Snyder's experiment reported showing much more improvement than I did in his drawing skills. Describing his progress in drawing cats, New York Times reporter Lawrence Osborne wrote, "I could hardly recognize them as my own drawings?Somehow I had gone from an incompetent draftsman to a very impressive artist."
When asked what benefits may be possible from his studies, Snyder replied, "I don't want to be able to draw like a savant. But what I would like to do is see the world just for a moment the way it really is. I'd like to be able to switch off the mind sets, switch off the prejudices if you like … make new connections.
"Humans are very good at concepts. They're very bad at seeing the world in a new light. If I can switch off the part of your mind that has that mind set … and allow you to just momentarily to look at the world in a new light, then you might see a different way to connect the dots."
I was disappointed that I didn't even approach that type of creative enhancement, but the experiment did change the way I think about things. What you come away with is a lesson in perception — the idea that your brain can deceive you, or hide things from you, or make you see things as you expect to see them, not as they are.
Is this going to fry my brain?
That was one of the first questions I had for Dr. Allan Snyder when I visited his lab at the University of Sydney in Australia. I had gone there to participate in an experiment with mind-numbing potential. Literally.
Snyder peered over the circular lenses of his glasses and smiled. "In Australia we have very strong mental health guards before we're allowed to do this on anybody," he said. "And … I don't want to hurt you at all."
Tapping Into Genius-Like Abilities
In fact, I felt pretty safe knowing that Snyder himself and dozens of volunteers, including the famed neurologist Oliver Sacks, had gone through the same procedure — having magnetic pulses fired into targeted areas of their brains in an experiment designed to tap into the genius — like abilities that savants possess in art, music, and math.
The experiment actually inhibits some brain activity to afford — in its premise, at least — heightened access to the parts of our brains that collect raw information before the data is filtered into concepts.
"We have these severely brain-impaired people who are performing what seems ostensibly to be a miracle," Synder said, referring to the extraordinary powers displayed by savants who otherwise have difficulting coping with everyday life. "It must be something that's in us all, and we can't access. They can."
Amid the Gothic architecture of the University of Sydney in Australia, Snyder directs a place called The Centre for the Mind. Even in winter, the slightly-built American-born scientist begins each day with an Olympic-sized swim to get his own brain working, and he is a bit of an eccentric — some say a wizard.
But he has master's degrees from Harvard and M.I.T.; a Ph.D. from University College in London; is a winner of the prestigious Marconi International prize; and also has been named one of Australia's 10 most creative minds.
Before I underwent the experiment myself, I had some basic questions — especially, "How can a person heighten certain skills by by suppressing some brain activity instead of increasing it?" The simple answer to that is, our brains are always filtering information. Snyder wants to suppress that filtering process, so we can see things in a kind of raw state — as autistic savants do.
I've reported many stories where I witnessed the types of feats that Snyder is studying. In 1993, I met Kim Peek, a savant who was diagnosed as retarded, not autistic. Kim was one of the models for the savant that Dustin Hoffman played in the movie Rain Man. Despite an IQ measured at 69 and an inability to dress himself, he has read and remembered encyclopedic details and can execute astounding calculations in his head.
"Thursday," he replied instantly. "And this year it's Monday and you retire in 2010, likewise on a Monday."
Stephen Wiltshire, an autistic savant I met in 1991, became world famous for his books of architectural illustrations, even though he was walled off emotionally by his autism and had no conceptual appreciation of the buildings he could draw-accurately and beautifully — from memory.
"If I was born November 1, 1945, what day of the week was that?" a woman asked him in a group we were taping.
Savants' 'Hyper-Literal' Worldview
Here's the difference. We might appreciate a great architectural work as a masterpiece of human achievement, functioning, for example, as a center for art or commerce. To an autistic savant, Snyder says, the same building is essentially a collection of components and objects — raw data with no particular meaning.
"These are people who are hyper-literal," Snyder said. "They see the world, they see the shading, they see the details in this world that we bypass and we're never aware of. But of course, they pay often a heavy price for that. They don't have the concepts.
They don't have the meaning."
The question that Snyder studies is: can we unlock that same potential in our own brains without paying the price?
To conduct his experiments, he uses a technique called Transcranial Magnetic Stimulation, or TMS.
"I'm using artificial means, in this case magnetic pulses to create virtual lesions — artificial brain damage — in a way that I can switch it on and off and have you display savant skills," Snyder said.
The "artifical" damage isn't permanent. Snyder's technique has been safely applied medically to treat depression and schizophrenia by using the pulses to temporarily suppress activity in some areas of the brain.
Hindered by Our Own ‘Expertise’
My brain, typically, has developed prejudices of which I'm not aware, Snyder told me as we entered the small room where he conducts his experiments.
"You're blinded by your expertise. You know, you do something. It's routine. You have a way of thinking about something, and yet you've forgotten why. In a sense, we're very prejudiced."
To illustrate his point, Snyder directed me to read lines that came across the screen like flash cards.
I thought I was reading the lines perfectly. After all, that's part of my training as a broadcast reporter. But I was completely unaware of the detail that I was omitting.
In a number of the sentences, Snyder added additional words. For instance, there were two "the's" in the card that read: "When in Rome do as the the Romans do."
I never even registered the second "the," or the additional words that were planted on the other flash cards. My mind identified a familiar concept — in this case, a cliché — and filtered out what didn't fit.
That's one way in which our brains process information.
"Our awareness seems to be that of an executive," Snyder said. "We get the executive statement, the executive summary. We don't get the back room deliberations."
A savant like Kim Peek may not have understood the meaning of the cliché, but he probably would not have missed the extra words I overlooked because of the literal way in which he absorbs information. Psychiatrist Daniel Christensen of Salt Lake City showed me that one possible reason for the manner in which Kim retains detail is that Kim's brain is lacking an important tissue bridge called the corpus callosum, which links the right and left hemispheres of the brain. One of the functions of the corpus callosum is to filter raw information. Kim, it is estimated, retains 95 per cent of the raw information he reads in one sitting.
Improving Our Ability to Look at Raw Data
With his experiment, Snyder wanted to improve my ability to look at the raw data. When Snyder's assistant marked a target with a pen on my blue skullcap, it was used to aim the magnetic pulses at the left fronto-temporal lobe of my brain, where (among many other things) I form concepts.
Would I be able to identify raw details more clearly — or reproduce the photos he showed me with more accurate drawings — when it was over?
Synder says about 40 percent of his volunteer subjects show pronounced effects. "They say they're much more aware of the details around the room. One person said that he had never before wanted to write, but suddenly he now wants to write compositions. In other words he was able to see the world in a kind of descriptive way."
I didn't become a da Vinci, but I did produce typical and interesting results. When I drew a dog before the experiment, I used the same techniques I learned in elementary school — assembling patterns of circles and ovals to represent the body and its parts.
After the pulses, I drew a dog in free-form style, imposing a better sense of motion on the figure. I started by drawing tufts on its back and tail — not the outline patterns I had been taught — but I was unaware until I looked at the videotapes that I had changed my method.
When Snyder published the results of his long-term experiments (in the Journal of Integrative Neuroscience), he reported that that was how many of the participants had responded. Compared to the "before" drawings, the "after" drawings — following 10, and then 15 minutes of pulses — showed stylistic changes that sometimes were radically different.
"I think this is the best indicator of how people break away from their mindset," Snyder said.
Skeptics say this could simply be the result of practice or repetition — even with savants.
Snyder cites case studies where sudden brain damage has resulted in unusual change.
"There's another person we've worked with who got hit on the head with a baseball when he was 9 years old," Snyder said. "He became very quickly … a calendar calculator." (He was instantly able to associate days of the week with specific calendar dates). "How can this be due to practice?"
Snyder also cites a landmark study by Bruce Miller, now of the University of California at San Francisco. Dr. Miller found that some patients began having extraordinary creative impulses even as some areas of their brains were deteriorating because of disease. The areas that showed damage in brain scans controlled language and behavior — where we label things. And as those areas were disabled, the creative side of the brain — including the frontal temporal lobes — gained more influence.
The condition is called frontotemporal dementia, and through Miller, I met one of its victims, Jack Friedman. As the damage to his brain progressed, Friedman changed from a conservative businessman to a free-spirited artist whose whimsical works sold for hundred of dollars each at California galleries. At the same time, his ability to function in everyday life declined drastically.
Freeing Artistic Talents?
Another journalist who participated in Snyder's experiment reported showing much more improvement than I did in his drawing skills. Describing his progress in drawing cats, New York Times reporter Lawrence Osborne wrote, "I could hardly recognize them as my own drawings?Somehow I had gone from an incompetent draftsman to a very impressive artist."
When asked what benefits may be possible from his studies, Snyder replied, "I don't want to be able to draw like a savant. But what I would like to do is see the world just for a moment the way it really is. I'd like to be able to switch off the mind sets, switch off the prejudices if you like … make new connections.
"Humans are very good at concepts. They're very bad at seeing the world in a new light. If I can switch off the part of your mind that has that mind set … and allow you to just momentarily to look at the world in a new light, then you might see a different way to connect the dots."
I was disappointed that I didn't even approach that type of creative enhancement, but the experiment did change the way I think about things. What you come away with is a lesson in perception — the idea that your brain can deceive you, or hide things from you, or make you see things as you expect to see them, not as they are.
Thursday, October 25, 2007
Autistic Boy is a Human IPod
An autistic boy who is blind and can barely speak has earned the nickname the 'human iPod' because of his piano playing abilities.
Derek Paravicini began playing the piano when he was two and started performing at the age of four, demonstrating his extraordinary ability to hear, remember and play all the music he encounters.
"For Derek music isn't just a hobby, it's a lifeline - it's his way of communicating with the world, of interrelating with other people and above all of making them happy" - Adam Ockleford
His mentor is Adam Ockleford, who said: "Derek and I first met when he was little - he was about four and a half. He just broke away from his parents and pushed a little girl off the piano and played Don't Cry For Me Argentina."
Born three months premature and weighing just one and a half pounds. Derek grew up blind and severely autistic, but these disabilities have probably led to his musical gift.
"We think that because he can't see and doesn't understand a lot of what is going on, other parts of his brain have got used for making music - so he's got a sort of musical factory up there," Mr Ockleford said.
He continued: "For Derek music isn't just a hobby, it's a lifeline - it's his way of communicating with the world, of interrelating with other people and above all of making them happy. He likes to make people happy and he knows he can do that through his music."
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