Sunday, July 17, 2011

The Extraordinary Abilities of an Autistic Savant

Daniel Tammet of England can verbally reel off the number pi to 22,500 decimal places in just over five hours -- though he admitted after a recent demostration that it made him "very tired."

Tammet, 26, is a phenomenon. He has done lots of amazing things -- like learning Icelandic, one of the world's most difficult languages, in just seven days.

That's because Tammet is an autistic savant. His extraordinary abilities stem from a combination of autism and a condition known as synesthesia. His form of autism, however, leaves him with less limited verbal skills than many other autistics.

Mixing of the Senses

Tammet experiences things through a mixing of the senses that the rest of us can't imagine. For instance, when he does math, he said, "I see landscapes in my mind. The numbers turn to shapes.

"They knit together in a way that forms almost like hills and mountains in my mind," he added, "full of color and full of shape and full of movement."

Tammet's talents are like those of the "Rain Man," portrayed on film by Dustin Hoffman and based on the life of Kim Peek, who Tammet once met.

"Amazing," Tammet said of the meeting. "There was something that was special for both of us, and I know it hasn't left me."

There are perhaps fewer than 50 autistic savants in the world, according to estimates by experts. Those few are people with remarkable, often staggering skills and challenges.

Autism may be the fastest-growing developmental disability, according to numbers from the Autism Society of America. Approximately one in 250 children have some form of it. That's up 172 percent in the 1990s.

Some of those kids also have savant abilities. No one knows why.

Learning to Walk

For all his remarkable gifts, Tammet has some everyday difficulties stemming from his autism. For instance, he doesn't like to come to a beach just a few minutes from his home because it is made up of pebbles — too many even for him to count. That makes him uncomfortable.

Tammet can't drive or do many other things that quire basic coordination. Just walking is something he had to do through an effort of will.

"I had to teach myself how to look and how to walk," he said, "how to move myself, how to coordinate myself without falling over, without looking down, without getting absorbed in my own self, my own world."

Tammet grew up one of nine children in working-class East London. He went to high school and some college, did not get special grades and works primarily as a tutor and consultant because he has a difficult time in a normal work environment.

After years of effort, Tammet has overcome many of his autistic disabilities. Now living outside of London, not only can he relate to people, he can describe what the experience of autism is like from the inside.

He loves silence, for instance.

"I experience it as like a silvery texture around my head, like condensation running down a window," he said. "If there's a sudden noise, it's like a shattering of that feeling."

Eloquent Voice of Autism?

Such eloquence may be Tammet's most remarkable gift, and it makes him a prime subject for autism researchers.

"Part of what we might learn from studying Daniel is, for example, how he perceives the world," said Simon Baron-Cohen, a professor at Cambridge University's Autism Research Center. "We know that people with autism attend to details much more than most people. And that means that if you're trying to teach somebody with autism, the details will matter."

Researchers from around the world are studying Tammet. Some believe his case may show that there's a savant in all of us, a little Rain Man, you might say, if only we could find a chemical or other way to unlock those abilities.

In a way, one might say Tammet has come back from the country of autism, which is a very difficult place for researchers and for parents to reach.

"I've come from a place where I felt so lonely, and so unwanted in a way," Tammet said. "And I've come along this road, and I've found this bridge, and I've come across it. And I don't know how, I don't know why, but I'm here and I'm able to talk to you today. And, for me, that's amazing."

Thursday, May 27, 2010

One man's story: When an autistic child grows up

CHATTANOOGA, Tennessee (CNN) -- When meeting Jeff Donohoo, it's not immediately apparent he is a 36-year-old man living with autism. In fact, unless you get him talking about the Atlanta Braves -- one of his true passions in life -- he is a very quiet person.

Early on, his younger brothers and sister didn't know, either.

"Since they grew up with him, they just knew Jeff was Jeff," said Nancy Donohoo, his mother. "They didn't think of him as weird or anything."

But when friends started to notice Donohoo was different, Nancy Donohoo was quick to explain to a group of 10-year-olds why.

"Jeff has a social problem, not a mental problem," she explained. "He's very smart. He reads encyclopedias ... he just doesn't know how to talk to people."

From then on, friends who visited the house always made an effort to interact with Donohoo, through a high-five or a simple "hello."

Today, it's unlikely Donohoo will be the first to say hello in a group setting, but interacting with people is easier for him than it once was.

Questioned about his childhood, his most elaborate response is "yeah" or "no." But when the topic is the Braves, it's hard to get him to stop talking about the latest statistics or his favorite player, Mark Teixeira.

Asked how long he's been a Braves fan, there was little hesitation: "All my life."

He's come a long way since he was a child. Then, just teaching Donohoo to talk was a challenge in itself, Nancy Donohoo said. "There was no eye contact, so I would hold his face in front of me, and say the word I wanted him to say."

Donohoo entered the first grade as a special education student. It was the first year special education was offered in his family's hometown of Florence, Alabama. He carried on with special education until the sixth grade, when he was mainstreamed, or put in classes with children without disabilities.

For most of Donohoo's childhood, his mother had suspicions about his condition. "When he was little, I had watched a 'Marcus Welby' show, and they had an autistic child on there. But he was very passive; he sat in the corner and just hit things," Nancy Donohoo said. "Jeff was wild. He was the opposite, so I just assumed he couldn't be autistic. But he had a lot of those mannerisms."

It was Donohoo's freshman year of high school when Nancy and Bill Donohoo learned what was wrong with their son.

"There was a doctor in Huntsville that dealt a lot with hyperactive children," Nancy Donohoo said. "He said, 'I'm going to give you this sheet of paper; these are all the symptoms of autism.' " The list had 19 symptoms, and Nancy Donohoo was instructed to circle the ones her son had.

The diagnosis didn't change how Nancy Donohoo dealt with her first-born son. In fact, the doctor said she already was doing all the right things, working to socialize Donohoo.

Today, Donohoo, living with his parents, finds comfort in strict routine. He wakes each day at 5 a.m. to make himself breakfast and prepare for work. At 6, Nancy Donohoo drives her son to Memorial Hospital, where he's entering his 16th year of service with the cafeteria.

Ollie Forté is Donohoo's supervisor, and has worked with Donohoo almost since the beginning. "He's very valuable to us at this department. He's dependable, on time, no attendance problems," said Forté. "We love Jeff."

After work, at 2:30 p.m., Donohoo rides with his mother to the YMCA, where he works out for about three hours.

Then it's back home, where he fixes himself dinner and spends hours online looking up Braves statistics, or reading a number of baseball-related books from his personal library.

This cycle repeats on days Donohoo works at the hospital. On his days off, the schedule is equally strict, with little variation. He'll still go to the YMCA, and he'll also make the occasional trip to the bookstore, adding to his collection of baseball-related literature.

Sudden changes to daily plans are still a challenge. "If he's made his plans to do something tonight," said Bill Donohoo, "and we come and say, 'We're going to get something to eat. Do you want to go?' that upsets his plans for what he's going to do that night."

Physical contact is also difficult. "He doesn't like to be touched," Nancy Donohoo said. "He doesn't freak, but he doesn't like it. He stiffens up. He'll want to give you a hug, but he still has a hard time."

The many challenges aside, Donohoo has a fine appreciation for things like cooking. In addition to preparing his own meals, he also enjoys baking.

"He loves desserts -- he loves sweets," Nancy Donohoo said with a laugh. "He's a little heavy, but we're working on that."

Nancy and Bill Donohoo have endured the challenges, and they acknowledge their son will never be fully independent. But one can tell they couldn't be prouder of him.

"It's rewarding today, because he's come so far, but it was a long road," Nancy Donohoo said.

Thursday, May 13, 2010

Original, talented, different: autism can be a gift

The latest scientific research and the “autistic pride” movement are saying that the condition can be advantageous

Sarah Hewitt has an enviable list of skills for her job as a senior IT consultant: incredible attention to detail, rapid analysis of complex information, an amazing memory and a laser-sharp focus that can, she admits, border on the obsessive.

She believes her talents are in part down to her autism; six years ago she was found to have Asperger’s syndrome — a high-functioning form of autism. “It’s difficult to know what’s a result of the Asperger’s and what’s me,” says Hewitt, 32, the only female technical consultant for BT Business. “Blue-sky thinking and role-play exercises are a nightmare for me. But I am very technically savvy, and my Asperger’s gives me an honest, blunt approach that customers like, even though it can cause problems with colleagues.”

Sarah is representative of a growing “autistic pride” movement — people who see autism as an advantage rather than a debilitating illness that needs to be “cured”. Their brains, they say, are simply wired differently. The latest New Scientist magazine reveals how research is uncovering the cognitive benefits of the autistic brain — ranging from the ability to process complex information incredibly quickly to the kind of talent shown by the autistic artist Stephen Wiltshire, who draws cityscapes from memory and has a West End gallery.

In the past couple of years, autism websites and blogs have sprung up to trumpet the achievements of “auties” and there’s an annual UK conference, Autscape, organised by and for autistic people. This year the US version, Autreat, is entitled “Living Life the Autly Way”. “Neuro-typicals”, non-autistic people, are accepted, but it’s made clear that the conference is not really for them.

Businesses are also realising that it’s worthwhile hiring autistic employees, especially in IT. A prominent autistic professor was cheered at a recent conference when she said that Silicon Valley wouldn’t exist without the condition.

As a result of Hewitt’s experience, BT offers placements to potential employees with Asperger’s and has a factsheet for those working with them. One Danish software company employs primarily those with Asperger’s to test mobile phone applications and games software; it has an error rate of just 0.5 per cent, compared with 5 per cent for other testers. In March, the company, Specialisterne, was awarded lottery funding to set up an arm in Glasgow. “This is not about offering cheap labour or occupational therapy,” said its founder, Thorkil Sonne. “We charge market rates, our consultants receive a market salary.”

That autistic people have talents is hardly new, but until now attention has tended to focus on the bizarre, savant-type abilities made famous by Dustin Hoffman in the film Rain Man. Now radical scientists — some of them autistic — are examining how the autistic brain works better.

The work is welcomed by campaigners such as Virginia Bovell, the former wife of the author Nick Hornby and mother of their autistic son, Danny, 16; she is doing a PhD on the ethics of wanting to “cure” autism. “It is absolutely right to stop portraying autism as a ghastly, negative thing,” she says. “Some in the US portray it as a disease to be eradicated, which I find offensive as well as inaccurate, and this work is crucial to counter that perception.”

She praises the work of the self-taught autistic scientist Michelle Dawson at the University of Montreal. Dawson and Professor Laurent Mottron challenged the link between autism and low IQ by publishing a study that shows that it all depends which IQ test you use. With the most popular test, 75 per cent of autistic people scored 70 or lower, which put them in the mentally retarded range. But an alternative test removed most from that category.

The pair have also proved that when given non-verbal reasoning tasks, autistic people work out the answer 20 to 40 per cent quicker than the rest of us — probably because they don’t need to translate the visual problem into a verbal one first. Other research suggests that autistic brains are better at visual searches, can process facts faster and are better at focusing intently on one topic. Autistic people can build up a huge factual knowledge because of this preoccupation with detail. They also tend to have very good memories, which may be linked to their visual capabilities.

And more autistic people may have savant skills than was previously thought, according to a study by King’s College London in 2008, which concluded that 29 per cent of participants had “exceptional skills”, the most common of which was an outstanding memory.

Richard Mills, director of research for the UK charity Research Autism, welcomes the scientific focus on autism’s benefits. “People often take it as read that people with autism lack a ‘theory of mind’ — the ability to consider the mental states of others. It’s recognised as one of the key deficits of the autistic brain — but the more you work with individuals with autism, the more you realise that they don’t lack it,” he says. “Their solutions are often quite novel — they think outside the box,” he says. “They are not seduced by media and they are very direct and straightforward.”

But he and Bovell worry that the relentless focus on autism’s benefits may prevent access to help and support, which is vital, particularly for those with lower IQs who are more severely autistic. “What concerns me is if people start saying, right then, autistic people don’t need help or support,” Bovell says. “That would be a disaster, because even those with higher IQs working in IT may still have major difficulties going to the shops or negotiating the Underground system.”

Saturday, January 23, 2010

The Inner Savant

Nadia appeared healthy at birth, but by the time she was 2, her parents knew something was amiss. She avoided eye contact and didn't respond when her mother smiled or cooed. She didn't even seem to recognize her mother. At 6 months she still had not spoken a word. She was unusually clumsy and spent hours in repetitive play, such as tearing paper into strips.

But at 31/2, she picked up a pen and began to draw—not scribble, draw. Without any training, she created from memory sketches of galloping horses that only a trained adult could equal. Unlike the way most people might draw a horse, beginning with its outline, Nadia began with random details. First a hoof, then the horse's mane, then its harness. Only later did she lay down firm lines connecting these floating features. And when she did connect them, they were always in the correct position relative to one another. ¦ Nadia is an autistic savant, a rare condition marked by severe mental and social deficits but also by a mysterious talent that appears spontaneously—usually before age 6.

Sometimes the ability of a savant is so striking, it eventually makes news. The most famous savant was a man called Joseph, the individual Dustin Hoffman drew upon for his character in the 1988 movie Rain Man. Joseph could immediately answer this question: "What number times what number gives 1,234,567,890?" His answer was "Nine times 137,174,210." Another savant could double 8,388,628 up to 24 times within several seconds, yielding the sum 140,737,488,355,328. A 6-year-old savant named Trevor listened to his older brother play the piano one day, then climbed onto the piano stool himself and played it better. A savant named Eric could find what he called the "sweet spot" in a room full of speakers playing music, the spot where sound waves from the different sources hit his ears at exactly the same time.

Most researchers have offered a simple explanation for these extraordinary gifts: compulsive learning. But Allan Snyder, a vision researcher and award-winning physicist who is director of the Center for the Mind at the University of Sydney and the Australian National University, has advanced a new explanation of such talents. "Each of us has the innate capacity for savantlike skills," says Snyder, "but that mental machinery is unconscious in most people."

Savants, he believes, can tap into the human mind's remarkable processing abilities. Even something as simple as seeing, he explains, requires phenomenally complex information processing. When a person looks at an object, for example, the brain immediately estimates an object's distance by calculating the subtle differences between the two images on each retina (computers programmed to do this require extreme memory and speed). During the process of face recognition, the brain analyzes countless details, such as the texture of skin and the shape of the eyes, jawbone, and lips. Most people are not aware of these calculations. In savants, says Snyder, the top layer of mental processing—conceptual thinking, making conclusions—is somehow stripped away. Without it, savants can access a startling capacity for recalling endless detail or for performing lightning-quick calculations. Snyder's theory has a radical conclusion of its own: He believes it may be possible someday to create technologies that will allow any nonautistic person to exploit these abilities.

The origins of autism are thought to lie in early brain development. During the first three years of life, the brain grows at a tremendous rate. In autistic children, neurons seem to connect haphazardly, causing widespread abnormalities, especially in the cerebellum, which integrates thinking and movement, and the limbic region, which integrates experience with specific emotions. Abnormalities in these regions seem to stunt interest in the environment and in social interaction. Autistic children have narrowed fields of attention and a poor ability to recognize faces. They are more likely to view a face, for example, as individual components rather than as a whole. Imaging studies have shown that when autistic children see a familiar face, their pattern of brain activation is different from that of normal children.

That narrowed focus may explain the autistic child's ability to concentrate endlessly on a single repetitive activity, such as rocking in a chair or watching clothes tumble in a dryer. Only one out of 10 autistic children show special skills.

In a 1999 paper, Snyder and his colleague John Mitchell challenged the compulsive-practice explanation for savant abilities, arguing that the same skills are biologically latent in all of us. "Everyone in the world was skeptical," says Vilayanur Ramachandran, director of the Center for Brain and Cognition at the University of California at San Diego. "Snyder deserves credit for making it clear that savant abilities might be extremely important for understanding aspects of human nature and creativity."

Drawings by normal 4-year-olds
When 4-year-old children draw a horse, they typically choose to establish its contour and familiar features such as head, eyes, legs, and tail. Allan Snyder believes that these kids draw on a concept of the horse to re-create it rather than recalling the precise physical details, as savants do.

A Drawing by a 3-year-old Savant
A 3-year-old child named Nadia became famous for her ability to sketch spectacularly detailed horses and riders from memory. Savants like Nadia show the ability to perform unusual feats of illustration or calculation when they are younger than 6. Snyder wants to figure out how they do it.

Snyder's office at the University of Sydney is in a Gothic building, complete with pointed towers and notched battlements. Inside, Nadia's drawings of horses adorn the walls; artwork by other savants hangs in nearby rooms.

Snyder's interest in autism evolved from his studies of light and vision. Trained as a physicist, he spent several years studying fiber optics and how light beams can guide their own path. At one time he was interested in studying the natural fiber optics in insects' eyes. The question that carried him from vision research to autism had to do with what happens after light hits the human retina: How are the incoming signals transformed into data that is ultimately processed as images in the brain? Snyder was fascinated by the processing power required to accomplish such a feat.

During a sabbatical to Cambridge in 1987, Snyder devoured Ramachandran's careful studies of perception and optical illusions. One showed how the brain derives an object's three-dimensional shape: Falling light creates a shadow pattern on the object, and by interpreting the shading, the brain grasps the object's shape. "You're not aware how your mind comes to those conclusions," says Snyder. "When you look at a ball, you don't know why you see it as a ball and not a circle. The reason is your brain is extracting the shape from the subtle shading around the ball's surface." Every brain possesses that innate ability, yet only artists can do it backward, using shading to portray volume.

"Then," says Snyder, speaking slowly for emphasis, "I asked the question that put me on a 10-year quest"—how can we bypass the mind's conceptual thinking and gain conscious access to the raw, uninterpreted information of our basic perceptions? Can we shed the assumptions built into our visual processing system?

A few years later, he read about Nadia and other savant artists in Oliver Sacks's The Man Who Mistook His Wife for a Hat and Other Clinical Tales. As he sat in his Sydney apartment one afternoon with the book in hand, an idea surfaced. Perhaps someone like Nadia who lacked the ability to organize sensory input into concepts might provide a window into the fundamental features of perception.

Snyder's theory began with art, but he came to believe that all savant skills, whether in music, calculation, math, or spatial relationships, derive from a lightning-fast processor in the brain that divides things—time, space, or an object—into equal parts. Dividing time might allow a savant child to know the exact time when he's awakened, and it might help Eric find the sweet spot by allowing him to sense millisecond differences in the sounds hitting his right and left ears. Dividing space might allow Nadia to place a disembodied hoof and mane on a page precisely where they belong. It might also allow two savant twins to instantaneously count matches spilled on the floor (one said "111"; the other said "37, 37, 37"). Meanwhile, splitting numbers might allow math savants to factor 10-digit numbers or easily identify large prime numbers—which are impossible to split.

Compulsive practice might enhance these skills over time, but Snyder contends that practice alone cannot explain the phenomenon. As evidence, he cites rare cases of sudden-onset savantism. Orlando Serrell, for example, was hit on the head by a baseball at the age of 10. A few months later, he began recalling an endless barrage of license-plate numbers, song lyrics, and weather reports.

If someone can become an instant savant, Snyder thought, doesn't that suggest we all have the potential locked away in our brains? "Snyder's ideas sound very New Age. This is why people are skeptical," says Ramachandran. "But I have a more open mind than many of my colleagues simply because I've seen [sudden-onset cases] happen."

Bruce Miller, a neurologist at the University of California at San Francisco, has seen similar transformations in patients with frontotemporal dementia, a degenerative brain disease that strikes people in their fifties and sixties. Some of these patients, he says, spontaneously develop both interest and skill in art and music. Brain-imaging studies have shown that most patients with frontotemporal dementia who develop skills have abnormally low blood flow or low metabolic activity in their left temporal lobe. Because language abilities are concentrated in the left side of the brain, these people gradually lose the ability to speak, read, and write. They also lose face recognition. Meanwhile, the right side of the brain, which supports visual and spatial processing, is better preserved.

"They really do lose the linguistic meaning of things," says Miller, who believes Snyder's ideas about latent abilities complement his own observations about frontotemporal dementia. "There's a loss of higher-order processing that goes on in the anterior temporal lobe." In particular, frontotemporal dementia damages the ventral stream, a brain region that is associated with naming objects. Patients with damage in this area can't name what they're looking at, but they can often paint it beautifully. Miller has also seen physiological similarities in the brains of autistic savants and patients with frontotemporal dementia. When he performed brain-imaging studies on an autistic savant artist who started drawing horses at 18 months, he saw abnormalities similar to those of artists with frontotemporal dementia: decreased blood flow and slowed neuronal firing in the left temporal lobe.

One blustery, rainy morning I drove to Mansfield, a small farm town 180 miles northeast of Melbourne. I was heading to a day clinic for autistic adults, where I hoped to meet a savant. The three-hour drive pitched and rolled through hills, occasionally cutting through dense eucalyptus forests punctuated with yellow koala-crossing signs. From time to time, I saw large, white-crested parrots; in one spot, a flock of a thousand or more in flight wheeled about like a galaxy.

I finally spotted my destination: Acorn Outdoor Ornaments. Within this one-story house, autistic adults learn how to live independently. They also create inexpensive lawn decorations, like the cement dwarf I see on the roof.

Joan Curtis, a physician who runs Acorn and a related follow-up program, explained that while true savants are rare, many people with autism have significant talents. Nurturing their gifts, she said, helps draw them into social interaction. Guy was one of the participants I met at Acorn. Although he was uncomfortable shaking my hand, all things electronic fascinated him, and he questioned me intently about my tape recorder.

Every horizontal surface in Guy's room was covered with his creations. One was an electric fan with a metal alligator mouth on the front that opened and closed as it rotated from side to side. On another fan a metal fisherman raised and lowered his pole with each revolution. And then I saw the sheep. Viewed from the left, it was covered in wool. Viewed from the right, it was a skeleton, which I learned Guy had assembled without any help. Guy didn't say much about himself. He cannot read nor do arithmetic, but he has built an electric dog that barks, pants, wags its tail, and urinates.

During my visit, another Acorn participant, Tim, blew into the room like a surprise guest on The Tonight Show. He was in a hurry to leave again, but asked me my birthday—July 15, 1970.

"Born on a Wednesday, eh?" he responded nonchalantly—and correctly.

"How did you do that?" I asked.

"I did it well," he replied.

"But how?" I asked.

"Very well," he replied, with obvious pleasure. Then he was out the door and gone.

How do calendar savants do it? Several years ago Timothy Rickard, a cognitive psychologist at the University of California at San Diego, evaluated a 40-year-old man with a mental age of 5 who could assign a day of the week to a date with 70 percent accuracy. Because the man was blind from birth, he couldn't study calendars or even imagine calendars. He couldn't do simple arithmetic either, so he couldn't use a mathematical algorithm. But he could only do dates falling within his lifetime, which suggests that he used memory.

He could, however, do some arithmetic, such as answer this question: If today is Wednesday, what day is two days from now? Rickard suspects that memorizing 2,000 dates and using such arithmetic would allow 70 percent accuracy. "That doesn't reduce it to a trivial skill, but it's not inconceivable that someone could acquire this performance with a lot of effort," he says. It's especially plausible given the single-minded drive with which autistics pursue interests.

Yet Tim, the savant at Acorn, can calculate dates as far back as 1900, as well as into the future. And there are reports of twins who could calculate dates 40,000 years in the past or future. Still, practice may be part of it. Robyn Young, an autism researcher at Flinders University in Adelaide, Australia, says some calendar savants study perpetual calendars several days a week (there are only 14 different calendar configurations; perpetual calendars cross-reference them to years).

But even if savants practice, they may still tap into that universal ability Snyder has proposed. Here it helps to consider art savants. That Nadia began drawings with minor features rather than overall outlines suggests that she tended to perceive individual details more prominently than she did the whole—or the concept—of what she was drawing. Other savant artists draw the same way.

Autistic children differ from nonautistic children in another way. Normal kids find it frustrating to copy a picture containing a visual illusion, such as M. C. Escher's drawing in which water flows uphill. Autistic children don't. That fits with Snyder's idea that they're recording what they see without interpretation and reproducing it with ease in their own drawings.

Even accomplished artists sometimes employ strategies to shake up their preconceptions about what they're seeing. Guy Diehl is not a savant, but he is known for his series of crystal-clear still lifes of stacked books, drafting implements, and fruit. When Diehl finds that he's hit a sticking point on a painting, for example, he may actually view it in a mirror or upside down. "It reveals things you otherwise wouldn't see, because you're seeing it differently," he says. "You're almost seeing it for the first time again."

Diehl showed me how art students use this technique to learn to draw. He put a pair of scissors on a table and told me to draw the negative space around the scissors, not the scissors themselves. The result: I felt I was drawing individual lines, not an object, and my drawing wasn't half bad, either.

Drawing exercises are one way of coaxing conceptual machinery to take five, but Snyder is pursuing a more direct method. He has suggested that a technique called transcranial magnetic stimulation, which uses magnetic fields to disrupt neuronal firing, could knock out a normal person's conceptual brain machinery, temporarily rendering him savantlike.

Young and her colleague Michael Ridding of the University of Adelaide tried it. Using transcranial magnetic stimulation on 17 volunteers, they inhibited neural activity in the frontotemporal area. This language and concept-supporting brain region is affected in patients with frontotemporal dementia and in the art savant whom Miller studied. In this altered state, the volunteers performed savantlike tasks—horse drawing, calendar calculating, and multiplying.

Five of the 17 volunteers improved—not to savant levels, but no one expected that, because savants practice. Furthermore, transcranial magnetic stimulation isn't a precise tool for targeting brain regions. But the five volunteers who improved were those in whom separate neurological assessments indicated that the frontotemporal area was successfully targeted. "Obviously I don't think the idea is so outlandish anymore," says Young. "I think it is a plausible hypothesis. It always was, but I didn't expect we'd actually find the things we did."

Snyder himself is experimenting with grander ideas. "We want to enhance conceptual abilities," he says, "and on the other hand remove them and enhance objectivity." He imagines a combination of training and hardware that might, for example, help an engineer get past a sticking point on a design project by offering a fresh angle on the problem. One method would involve learning to monitor one's own brain waves. By watching one's own brain waves during drawing exercises, Snyder imagines it may be possible to learn to control them in a way that shuts down their concept-making machinery—even the left temporal lobe itself.

Even if further research never fully reveals why savants have extraordinary skills, we may at least learn from their potential. Snyder is optimistic. "I envisage the day," he says, "when the way to get out of a [mental rut] is you pick up this thing—those of us with jobs that demand a certain type of creativity—and you stimulate your brain. I'm very serious about this."

Monday, September 7, 2009

Young writer gives insight into being autistic

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 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”

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."

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.''

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.

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.”

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.

Friday, November 14, 2008

My life with Asperger's

This article is from follow this link if you want to read more.

Stephen, 22, hasn't let having Asperger Syndrome get in the way of achieving success. He tells 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."

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.

Tuesday, July 29, 2008

Swimmer trying to conquer Lake Ontario

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

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.


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.


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