This article is from TheSite.org.Please follow this link if you want to read more.
http://www.thesite.org/community/reallife/truestories/aspergersyndrome
Stephen, 22, hasn't let having Asperger Syndrome get in the way of achieving success. He tells TheSite.org about his daily struggle to lead a normal life and how he couldn't have done it without the support and help of various people.
Asperger Syndrome (AS) is a condition which very few people understand clearly. Unless you have in some way been affected by it yourself, it's very difficult to figure out how a person with Asperger's operates. I was first diagnosed with the condition when I was 13 years-old; however, I'm finding that it's having a greater effect on my life as I get older. AS is a part of the Autistic spectrum, so a person with the disorder is likely to have great difficulty in social interaction and understanding the 'unwritten rules' that are taken for granted. They may also follow a set routine and experience anxiety when this is broken. Additionally the condition can have an affect on physical co-ordination, yet someone's level of intelligence is usually average or above average.
Feeling different
Looking back at my time in secondary school I realise that I was somewhat different to my peers. I usually preferred to be with one or two other people rather than in a larger group. I talked about my own interests to excess and didn't recognise the signs that others were perhaps less interested. Sport wasn't one of my strengths and I found games such as football, tennis and cricket a chore, rather than a pleasure. Anxiety affected me the most and continues to do so - I worried extensively when faced with a new or uncomfortable situation. I feared the idea of getting into trouble more than most and because of this was more concerned about making mistakes. Subsequently I developed the reputation of being a 'goody-goody'.
Thankfully there weren't too many incidents of bullying, largely because I was somewhat protected at school and any problems were swiftly dealt with. Later on, school exams and the fear of failure were a big issue for me. I have nothing but praise for the support I received during my GCSEs and with help I was able to come up with an effective revision timetable and could regularly talk to teachers about any concerns I had. When I finally got my results and discovered that all my grades were A to Cs, I was delighted. It made me realise for the first time just what I was capable of achieving.
"I feared the idea of getting into trouble more than most and because of this was more concerned about making mistakes. Subsequently I developed the reputation of being a 'goody-goody'."
The pressure to succeed
After completing my A-Levels I went to Kingston University, but although I was still living at home, I found the experience especially challenging as I was expected to socialise with a completely new set of faces. The first couple of years were relatively straightforward and I became more confident in my abilities and was able to voice my views more regularly. The nature of the work sometimes required me to interview strangers outside the university and although this seemed daunting at first, I was able to perform the tasks with relative ease. The third year of uni was a lot more challenging because of the added pressure and it was at this point that I experienced severe anxiety, which I could not always control. After visiting a psychiatrist I was diagnosed with depression. There were talks of putting my degree on hold whilst I recovered and graduating later than the others, but I refused to contemplate this option and insisted that I finish on schedule. I graduated in 2007 with a 2:1 in Criminology and Film Studies. This was another occasion when I had proved to myself that I was capable of more than I had initially thought possible. Despite some serious setbacks I had achieved my goal.
Finding a job
I'm now possibly facing my biggest challenge of finding a career and competing in the adult world. So far, I must admit, it's not been easy. I've attended several interviews and many were unsuccessful. To earn a bit of extra money I have done a variety of temporary jobs, some of which have been extremely menial. Subsequently my confidence has gone up and down in the last year and the sense of frustration has at times been unbearable. With the help of the National Autistic Society I've been able to focus and think about what I want to do in the long-term. I'm currently preparing to do a post-graduate diploma in Journalism and I'm building up my portfolio by working at the local paper once a week.
I would also say that I've improved socially over the last three years, but I still have a fair way to go. I'm now a lot more vocal than I was a few years ago, although I often remain unsure of myself when meeting new people. Subsequently this has affected my ability to form potential relationships and I'm aware that this will take time to conquer. Having more understanding about the effects of AS has certainly helped me to come to terms with the condition. One thing I've learned is that with the right help and support someone with Asperger's can enjoy a fulfilled and successful life.
Friday, November 14, 2008
Thursday, July 31, 2008
College a challenge for autistic
Many surprised to find they must be their own advocates
By Melissa Kossler Dutton
Associated Press
When Dan Hackett started college, he didn't make the grades he knew he could.
Hackett, who has Asperger's syndrome, found at the Community College of Allegheny County in Pittsburgh that some of his symptoms were holding him back. He had difficulty organizing his time and managing assignments.
"I always knew I could do better," said Hackett.
His parents tried to help, but he wasn't comfortable with them intervening at college. He was relieved to discover Achieving in Higher Education with Autism/Developmental Disabilities, a group that helps college students like him.
After contracting with AHEADD, Hackett's grade-point average increased from 1.5 to 3.6.
"They kept me on track," said the now 21-year-old political science major. "They helped me manage my time."
colleges reach out
Many students with Asperger's or other autism-like disorders face new challenges in a college setting. The syndrome hampers communication and social skills, so along with difficulties staying on top of their studies, these students may struggle with making friends and living more independently. They also may be more reluctant to ask for help.
It's a problem colleges and universities are "very aware" of as the first big wave of children diagnosed with autism-related disorders moves beyond high school, said Gwendolyn Dungy, executive director of NASPA, a Washington-based organization of student affairs administrators.
"We've been very interested in it and finding out how ready colleges are for these students," she said. "We want to establish a climate for success."
While higher education institutions usually make accommodations for students with disabilities, the law does not require them to provide the extent of services that students receive in kindergarten through 12th grade.
College students must become their own advocates, a change that can take them and their families by surprise, said Donna Martinez, executive director of George Washington University's Heath Resource Center, an online clearinghouse for students with disabilities.
"It's night and day" from high school, she said.
Colleges are trying to educate faculty and staff about autism-related disorders and gauge how much services will cost, said Dungy. Most colleges already provide services to students with disabilities or special needs.
expanded definition
For decades, only children with severe language and social impairments received the autism diagnosis. In the 1990s, the autism umbrella expanded, and autism is now shorthand for a group of milder, related conditions, known as "autism spectrum disorders."
One in 166 children is now diagnosed with autism, compared to 1 in 2,500 a decade ago.
There has been a corresponding surge in special education services for autistic children in elementary and high schools. Now, some of these students are headed to college.
One college that has added services for such students is Marshall University, home to the West Virginia Autism Training Center. Through its College Program for Students with Asperger's Syndrome, graduate students help autistic students manage class assignments and develop social and living skills.
Students pay $3,200 per semester to enroll in Marshall's program. Advisers may speak with them several times a day, have weekly contact with their professors and help find them social activities. They might give guidance on dorm living or cafeteria food.
"Most classes are 50 minutes long, two to three times a day," noted program coordinator Marc Ellison. "The rest of the time, you're navigating the college community. My advice to students is to realize the least amount of time you spend in college is in the classroom."
By Melissa Kossler Dutton
Associated Press
When Dan Hackett started college, he didn't make the grades he knew he could.
Hackett, who has Asperger's syndrome, found at the Community College of Allegheny County in Pittsburgh that some of his symptoms were holding him back. He had difficulty organizing his time and managing assignments.
"I always knew I could do better," said Hackett.
His parents tried to help, but he wasn't comfortable with them intervening at college. He was relieved to discover Achieving in Higher Education with Autism/Developmental Disabilities, a group that helps college students like him.
After contracting with AHEADD, Hackett's grade-point average increased from 1.5 to 3.6.
"They kept me on track," said the now 21-year-old political science major. "They helped me manage my time."
colleges reach out
Many students with Asperger's or other autism-like disorders face new challenges in a college setting. The syndrome hampers communication and social skills, so along with difficulties staying on top of their studies, these students may struggle with making friends and living more independently. They also may be more reluctant to ask for help.
It's a problem colleges and universities are "very aware" of as the first big wave of children diagnosed with autism-related disorders moves beyond high school, said Gwendolyn Dungy, executive director of NASPA, a Washington-based organization of student affairs administrators.
"We've been very interested in it and finding out how ready colleges are for these students," she said. "We want to establish a climate for success."
While higher education institutions usually make accommodations for students with disabilities, the law does not require them to provide the extent of services that students receive in kindergarten through 12th grade.
College students must become their own advocates, a change that can take them and their families by surprise, said Donna Martinez, executive director of George Washington University's Heath Resource Center, an online clearinghouse for students with disabilities.
"It's night and day" from high school, she said.
Colleges are trying to educate faculty and staff about autism-related disorders and gauge how much services will cost, said Dungy. Most colleges already provide services to students with disabilities or special needs.
expanded definition
For decades, only children with severe language and social impairments received the autism diagnosis. In the 1990s, the autism umbrella expanded, and autism is now shorthand for a group of milder, related conditions, known as "autism spectrum disorders."
One in 166 children is now diagnosed with autism, compared to 1 in 2,500 a decade ago.
There has been a corresponding surge in special education services for autistic children in elementary and high schools. Now, some of these students are headed to college.
One college that has added services for such students is Marshall University, home to the West Virginia Autism Training Center. Through its College Program for Students with Asperger's Syndrome, graduate students help autistic students manage class assignments and develop social and living skills.
Students pay $3,200 per semester to enroll in Marshall's program. Advisers may speak with them several times a day, have weekly contact with their professors and help find them social activities. They might give guidance on dorm living or cafeteria food.
"Most classes are 50 minutes long, two to three times a day," noted program coordinator Marc Ellison. "The rest of the time, you're navigating the college community. My advice to students is to realize the least amount of time you spend in college is in the classroom."
Special education struggles in school
BUFFALO, N.Y. (WIVB) - - Young people dealing with Autism or Asperger Syndrome often face an uphill battle in the classroom. One family's struggle with schooling and takes a look at how schools handle the challenge of teaching these special students.
When Tim Miller started coming home from school in sixth grade telling his parents horror stories, they didn't know what to think.
John Miller, Tim's Father, said, "Our son was coming home and telling us the school was trying to kill him - with his communication deficits at the time he didn't know how to say he was being restrained."
John Miller says his son, who has Asperger Syndrome or a higher functioning form of autism, was being put in prone restraints when he acted out in class. Although he admits Tim, then 12, had behavioral issues, he believes the school went too far.
Tim Miller, teen with Asperger Syndrome, said, "I remember they just grabbed me and put me into the room or whatever and I remember they had the mat and just threw me to the ground."
John Miller, Tim's Father, said, "Every time they restrained my son, they were stepping outside of their training."
Summit Educational Resources CEO Dr. Stephen Anderson says in general restraints are a last resort.
Dr. Stephen Anderson, Summit Educational Resources CEO, said, "Restraint is the emergency procedure, it's the back up, it's the thing you may have to do if all else fails and there's a risk to the individual or others."
But the Millers say the restraints were just part of their problem with the Allegany-Limestone Central School District.
John Miller, Tim's Father, said, "Crucial in this whole thing are the denied services. Allegany-Limestone Central Schools I believe intentionally mis-classified my son for six years."
Miller says if Tim had been classified as autistic when he was diagnosed, he would have received the social, behavioral, and educational services he needs.
But Dr. Anderson says that may not be the case in public schools.
Dr. Stephen Anderson, Summit Educational Resources CEO, said, "If a kid is achieving academically, I'm not sure what their responsibility is after that, we'd all like them to embrace and do more, but their resources are limited as well."
He says it's a difficult balance for schools to meet the needs of children with autism or Asperger Syndrome while not disrupting the education of other children.
Dr. Stephen Anderson, Summit Educational Resources CEO, said, "I don't think school districts have ever seen this with the frequency that they're starting to see it now because they're keeping kids with more challenging behaviors within the context."
Both the Allegany-Limestone Superintendent and the school's attorney would not comment because of privacy issues and because Tim Miller's case is currently in litigation.
An impartial hearing on the matter was overturned, and it is now headed to federal court.
When Tim Miller started coming home from school in sixth grade telling his parents horror stories, they didn't know what to think.
John Miller, Tim's Father, said, "Our son was coming home and telling us the school was trying to kill him - with his communication deficits at the time he didn't know how to say he was being restrained."
John Miller says his son, who has Asperger Syndrome or a higher functioning form of autism, was being put in prone restraints when he acted out in class. Although he admits Tim, then 12, had behavioral issues, he believes the school went too far.
Tim Miller, teen with Asperger Syndrome, said, "I remember they just grabbed me and put me into the room or whatever and I remember they had the mat and just threw me to the ground."
John Miller, Tim's Father, said, "Every time they restrained my son, they were stepping outside of their training."
Summit Educational Resources CEO Dr. Stephen Anderson says in general restraints are a last resort.
Dr. Stephen Anderson, Summit Educational Resources CEO, said, "Restraint is the emergency procedure, it's the back up, it's the thing you may have to do if all else fails and there's a risk to the individual or others."
But the Millers say the restraints were just part of their problem with the Allegany-Limestone Central School District.
John Miller, Tim's Father, said, "Crucial in this whole thing are the denied services. Allegany-Limestone Central Schools I believe intentionally mis-classified my son for six years."
Miller says if Tim had been classified as autistic when he was diagnosed, he would have received the social, behavioral, and educational services he needs.
But Dr. Anderson says that may not be the case in public schools.
Dr. Stephen Anderson, Summit Educational Resources CEO, said, "If a kid is achieving academically, I'm not sure what their responsibility is after that, we'd all like them to embrace and do more, but their resources are limited as well."
He says it's a difficult balance for schools to meet the needs of children with autism or Asperger Syndrome while not disrupting the education of other children.
Dr. Stephen Anderson, Summit Educational Resources CEO, said, "I don't think school districts have ever seen this with the frequency that they're starting to see it now because they're keeping kids with more challenging behaviors within the context."
Both the Allegany-Limestone Superintendent and the school's attorney would not comment because of privacy issues and because Tim Miller's case is currently in litigation.
An impartial hearing on the matter was overturned, and it is now headed to federal court.
Tuesday, July 29, 2008
Swimmer trying to conquer Lake Ontario
By JORDAN PRESS, SUN MEDIA
The Toronto Sun
In early May, Jay Serdula dreamed that he was swimming across Lake Ontario, each stroke bringing him closer to the Toronto shoreline.
He could see the CN Tower looming larger. His body felt fresh and he was feeling good about making it ashore.
Yesterday that dream came true for the Kingston resident. Setting out from Niagara-on-the-Lake at 10 a.m., he is trying to swim across Lake Ontario to raise money and awareness for Asperger's syndrome, a disorder on the mild end of the autism spectrum that makes it difficult for people to adapt to new things.
He is scheduled to end his swim at Toronto's Marilyn Bell Park today between 3-6 p.m.
Serdula, 36, was born with Asperger's. He has prepared two years for this moment, and it's the preparation, he said, that should help him finish the swim.
"Inexperienced athletes are nervous; they focus on results. Experienced athletes focus on preparation," said Serdula, a research assistant in the chemical engineering department at Royal Military College.
"Just prepare," he said, "and the results will follow."
Serdula has been swimming since he was 7 years old. When he started competing in triathlons in 1990, his swims covered sometimes more than 2 km. The swimming portion was not his strongest leg of the event.
Serdula decided to take on Lake Ontario two years ago after following then 15-year-old Jenna Lambert's marathon swim to raise money and awareness for cerebral palsy and the Penguins swim team.
He wanted to do the same, to challenge himself and, after some coaxing from friends, he undertook the task.
On Saturday, two days before he headed to Niagara-on-the-Lake to start his swim, Serdula looked calm. On a walk near his west-end home, he sauntered along at an easy pace, talking matter-of-factly about what he had to do.
The water will bring with it cold, waves and darkness. All are things he will have to avoid focusing on to make a successful crossing, he said.
To counter those concerns, he has decided to keep feeding breaks short and spread out at specific intervals during the swim. Serdula said he figures to be fine for the first 10 hours in the water, it's the remaining hours that he expects will require him to summon more energy and therefore more food to eat.
He intends to swim freestyle -- or front crawl -- for the majority of the swim, switching to breast stroke every so often to give his shoulders a rest.
He said at night he will focus on the boat with his swim master and volunteers, who will guide the way through the darkness.
Although he tends to focus on things due to his Asperger's, Serdula said marathon swimmer Vicki Keith advised him that he should focus on the swim and not on the temperature of the water. Serdula started corresponding with Keith last summer. The veteran swimmer gave Serdula tips on speed training and indoor workouts throughout the year and now she has helped with mental preparation.
Last year, Serdula twice tried to swim for a 24-hour period. On one attempt at a friend's cottage, he said, he stayed in the water for 19 hours." I knew I could have gone on longer," Serdula said. "I knew I was ready."
The Toronto Sun
In early May, Jay Serdula dreamed that he was swimming across Lake Ontario, each stroke bringing him closer to the Toronto shoreline.
He could see the CN Tower looming larger. His body felt fresh and he was feeling good about making it ashore.
Yesterday that dream came true for the Kingston resident. Setting out from Niagara-on-the-Lake at 10 a.m., he is trying to swim across Lake Ontario to raise money and awareness for Asperger's syndrome, a disorder on the mild end of the autism spectrum that makes it difficult for people to adapt to new things.
He is scheduled to end his swim at Toronto's Marilyn Bell Park today between 3-6 p.m.
Serdula, 36, was born with Asperger's. He has prepared two years for this moment, and it's the preparation, he said, that should help him finish the swim.
"Inexperienced athletes are nervous; they focus on results. Experienced athletes focus on preparation," said Serdula, a research assistant in the chemical engineering department at Royal Military College.
"Just prepare," he said, "and the results will follow."
Serdula has been swimming since he was 7 years old. When he started competing in triathlons in 1990, his swims covered sometimes more than 2 km. The swimming portion was not his strongest leg of the event.
Serdula decided to take on Lake Ontario two years ago after following then 15-year-old Jenna Lambert's marathon swim to raise money and awareness for cerebral palsy and the Penguins swim team.
He wanted to do the same, to challenge himself and, after some coaxing from friends, he undertook the task.
On Saturday, two days before he headed to Niagara-on-the-Lake to start his swim, Serdula looked calm. On a walk near his west-end home, he sauntered along at an easy pace, talking matter-of-factly about what he had to do.
The water will bring with it cold, waves and darkness. All are things he will have to avoid focusing on to make a successful crossing, he said.
To counter those concerns, he has decided to keep feeding breaks short and spread out at specific intervals during the swim. Serdula said he figures to be fine for the first 10 hours in the water, it's the remaining hours that he expects will require him to summon more energy and therefore more food to eat.
He intends to swim freestyle -- or front crawl -- for the majority of the swim, switching to breast stroke every so often to give his shoulders a rest.
He said at night he will focus on the boat with his swim master and volunteers, who will guide the way through the darkness.
Although he tends to focus on things due to his Asperger's, Serdula said marathon swimmer Vicki Keith advised him that he should focus on the swim and not on the temperature of the water. Serdula started corresponding with Keith last summer. The veteran swimmer gave Serdula tips on speed training and indoor workouts throughout the year and now she has helped with mental preparation.
Last year, Serdula twice tried to swim for a 24-hour period. On one attempt at a friend's cottage, he said, he stayed in the water for 19 hours." I knew I could have gone on longer," Serdula said. "I knew I was ready."
Sunday, July 27, 2008
Running for a friend
By Scott O'Connell/GateHouse News Service
MetroWest Daily News
Posted Jul 26, 2008 @ 10:53 PM
WESTBOROUGH —
As a captain of the Westborough High School boys cross country team, Matt Gitkind is used to running to finish number one.
But in the 36th annual Falmouth Road Race on Aug. 10, Gitkind will be aiming for a much higher number: 750, the amount in dollars he must raise for his race sponsor, the Doug Flutie Jr. Foundation for Autism. More importantly, he will be trying to bring attention to a cause that is as personal to him as it is to the charity's founder, former NFL quarterback Doug Flutie, whose son has the disorder.
For the past several years, Gitkind has helped his friend Evan McNamara, who suffers from Asperger's Syndrome, a form of autism, live with his condition. During the summer, Gitkind gets together with McNamara to cook, play sports, study or just talk.
"We've lived up the street from each other our entire lives," said Gitkind, who is one year younger than McNamara. "We play a lot of basketball, video games - just hanging out, pretty much."
But Gitkind is also helping his friend prepare for a future on his own, assisting McNamara with "ADLs" - Activities of Daily Living, such as cooking.
"It's pretty organized," he said. "I'll come down from 10 to 3. I'll bring baking stuff. Evan will crack the eggs, he'll mix the stuff."
"It's something I can do when I'm living alone," McNamara said. Gitkind also helps him with schoolwork - "It really helped me pass (the MCAS)."
McNamara, who has attended school outside the Westborough district since second grade (he was diagnosed at age 4), will join Gitkind at Westborough High when the two enter their senior year in the fall.
Gitkind began working with McNamara in late 2005, after his older brother, who had also helped McNamara, left for college.
"I wanted to still hang out with Evan, so I took his spot," he said. The two were already friends, he said, and had much in common: "We talk a lot about movies, we both love 'The Simpsons' and 'Family Guy' ... I feel we have a really good connection."
But working more closely with McNamara has given Gitkind a better understanding of his friend's life with Asperger's.
"It kind of has given me a different view of autism," he said. "I feel like a lot of people don't always have a full understanding of it. A lot of people don't know what it's like to live your whole life with a disability."
Asperger's Syndrome primarily affects communication and behavior, but generally with a lower level of severity than other types of autism. Sometimes people may not even recognize the affliction in someone who has it, mistaking it simply for odd behavior.
"It can affect social life, things like that," said McNamara, who nonetheless added that he has run into few people who have misunderstood him.
But the realities of Asperger's can create challenges for families, and Gitkind noted that McNamara's mother, for example, "has a lot of problems with transportation - it can get expensive."
That's where charities like the Flutie Foundation step in - "(They) help with things like that," Gitkind said.
Gitkind got hooked up with the foundation last year, after he had run in the Falmouth Road Race the previous three years with members of his family, but was having a hard time getting an entry number.
"It's really difficult to get one for Falmouth, but organizations help," he said. Gitkind learned that the Flutie Foundation was putting a team together to run, and decided to join.
"I thought, 'This is perfect,' " he said.
"I have so much fun hanging out with Evan, I just felt I should give something back to the entire community of people and families affected by autism."
That year, he raised $1,000 for the foundation, which helps create awareness of autism and raise money for families and research.
This year he'll be running with a similar goal in mind.
"It's a really great cause," he said. "I just hope that we can raise more awareness."
MetroWest Daily News
Posted Jul 26, 2008 @ 10:53 PM
WESTBOROUGH —
As a captain of the Westborough High School boys cross country team, Matt Gitkind is used to running to finish number one.
But in the 36th annual Falmouth Road Race on Aug. 10, Gitkind will be aiming for a much higher number: 750, the amount in dollars he must raise for his race sponsor, the Doug Flutie Jr. Foundation for Autism. More importantly, he will be trying to bring attention to a cause that is as personal to him as it is to the charity's founder, former NFL quarterback Doug Flutie, whose son has the disorder.
For the past several years, Gitkind has helped his friend Evan McNamara, who suffers from Asperger's Syndrome, a form of autism, live with his condition. During the summer, Gitkind gets together with McNamara to cook, play sports, study or just talk.
"We've lived up the street from each other our entire lives," said Gitkind, who is one year younger than McNamara. "We play a lot of basketball, video games - just hanging out, pretty much."
But Gitkind is also helping his friend prepare for a future on his own, assisting McNamara with "ADLs" - Activities of Daily Living, such as cooking.
"It's pretty organized," he said. "I'll come down from 10 to 3. I'll bring baking stuff. Evan will crack the eggs, he'll mix the stuff."
"It's something I can do when I'm living alone," McNamara said. Gitkind also helps him with schoolwork - "It really helped me pass (the MCAS)."
McNamara, who has attended school outside the Westborough district since second grade (he was diagnosed at age 4), will join Gitkind at Westborough High when the two enter their senior year in the fall.
Gitkind began working with McNamara in late 2005, after his older brother, who had also helped McNamara, left for college.
"I wanted to still hang out with Evan, so I took his spot," he said. The two were already friends, he said, and had much in common: "We talk a lot about movies, we both love 'The Simpsons' and 'Family Guy' ... I feel we have a really good connection."
But working more closely with McNamara has given Gitkind a better understanding of his friend's life with Asperger's.
"It kind of has given me a different view of autism," he said. "I feel like a lot of people don't always have a full understanding of it. A lot of people don't know what it's like to live your whole life with a disability."
Asperger's Syndrome primarily affects communication and behavior, but generally with a lower level of severity than other types of autism. Sometimes people may not even recognize the affliction in someone who has it, mistaking it simply for odd behavior.
"It can affect social life, things like that," said McNamara, who nonetheless added that he has run into few people who have misunderstood him.
But the realities of Asperger's can create challenges for families, and Gitkind noted that McNamara's mother, for example, "has a lot of problems with transportation - it can get expensive."
That's where charities like the Flutie Foundation step in - "(They) help with things like that," Gitkind said.
Gitkind got hooked up with the foundation last year, after he had run in the Falmouth Road Race the previous three years with members of his family, but was having a hard time getting an entry number.
"It's really difficult to get one for Falmouth, but organizations help," he said. Gitkind learned that the Flutie Foundation was putting a team together to run, and decided to join.
"I thought, 'This is perfect,' " he said.
"I have so much fun hanging out with Evan, I just felt I should give something back to the entire community of people and families affected by autism."
That year, he raised $1,000 for the foundation, which helps create awareness of autism and raise money for families and research.
This year he'll be running with a similar goal in mind.
"It's a really great cause," he said. "I just hope that we can raise more awareness."
Saturday, July 26, 2008
Autistic computer whiz seeks a mentor
Joseph Gannon, diagnosed with Asperger Syndrome, looks forward to owning a business.
By BARBARA GIASONE
The Orange County Register
FULLERTON — Job landed, job lost, job landed …
Joseph Gannon's employment record looks like a stock market graph in a see-saw economy.
In the past 10 years, Gannon has been hired and laid off from more than 10 workplaces.
"My bosses don't respect my side of the story when something goes wrong," said Gannon, 35, seated in his Fullerton home. "They just write me up and then ask what happened. They should take me off to the side and discuss the problem."
It's not that Gannon isn't good at what he does, his mother, Daralyn, explained. He just has problems socializing. He knows he's doing his job, and expects everyone else to do the same.
That's one of the perils of Asperger Syndrome, an offshoot of autism that causes a patient to struggle with social skills and restrictive and repetitive behavior.
Lisa Murillo, the director of employment services for the Easter Seals Society, has been working with Gannon for two years, trying to find a job that will suit his skills.
"But it keeps coming back to computers," she said. "Joseph likes to work independently and make decisions by himself."
For that reason, the Troy High School graduate hopes to find a mentor who will work with him on developing his own home-based, computer-building business for private customers.
Paula Pompa-Craven, the regional vice president of the Easter Seals of Southern California, said Gannon would be well-suited for what Easter Seals calls "micro-enterprise."
"He's going along that path, but we just need to find someone to help," said Pompa-Craven, who noted the Regional Center of Orange County in 2007 provided services to 2,700 people diagnosed with autism.
Yet, unlike many of those who have been treated for the disease since childhood, Gannon wasn't diagnosed until he was 27 years old.
"Autism wasn't part of the English language when Joseph was growing up," Daralyn said. "He had a speech impairment, auditory discrimination and he could read, but didn't understand the meaning of words."
Gannon's parents took him to behavior modification classes at the Child Guidance Center in Fullerton, but Gannon didn't adjust to the program.
In the second grade, he couldn't handle the structure and confusion.
He was enrolled in the UCI live-in program that Daralyn said, "was a disaster."
"Joseph was tormented emotionally," she said. "When he went back to Commonwealth School, teacher Katie Reitzel took an interest. But classmates chose Joseph last on the team."
Gannon's father, Gerald, who is a math instructor at Cal State Fullerton, tried to help find a campus job for his son.
But that didn't work out.
The bewildered student attended Fullerton College, Orange Coast College Culinary Arts and worked in fast-food industry.
"Food services were frustrating because of the number of people who come in – and all the noise," Gannon recalled.
And even though he dislikes confusion, his favorite hobby is going to Disneyland.
Finally, at age 27, Gannon met his mother's friend who works with autistic students in the Placentia-Yorba Linda School District. She maintained it was autism, and recommended Gannon be tested.
The friend was right.
Several agencies stepped into the picture and provided some help. Eventually, it was the Easter Seals Autism Services that took a strong interest in Gannon's case.
He works several days a week at a small department store in Placentia. Easter Seals provides a job coach who works right alongside Gannon every minute of the work day.
The rest of the week, the skilled computer expert retreats to his home office where he enjoys computer programming, watching DVDs and listening to music.
"I just need somebody to help me get started in my own business," Gannon said. "I know I could handle everything."
And it would be in a quiet, non-threatening environment.
By BARBARA GIASONE
The Orange County Register
FULLERTON — Job landed, job lost, job landed …
Joseph Gannon's employment record looks like a stock market graph in a see-saw economy.
In the past 10 years, Gannon has been hired and laid off from more than 10 workplaces.
"My bosses don't respect my side of the story when something goes wrong," said Gannon, 35, seated in his Fullerton home. "They just write me up and then ask what happened. They should take me off to the side and discuss the problem."
It's not that Gannon isn't good at what he does, his mother, Daralyn, explained. He just has problems socializing. He knows he's doing his job, and expects everyone else to do the same.
That's one of the perils of Asperger Syndrome, an offshoot of autism that causes a patient to struggle with social skills and restrictive and repetitive behavior.
Lisa Murillo, the director of employment services for the Easter Seals Society, has been working with Gannon for two years, trying to find a job that will suit his skills.
"But it keeps coming back to computers," she said. "Joseph likes to work independently and make decisions by himself."
For that reason, the Troy High School graduate hopes to find a mentor who will work with him on developing his own home-based, computer-building business for private customers.
Paula Pompa-Craven, the regional vice president of the Easter Seals of Southern California, said Gannon would be well-suited for what Easter Seals calls "micro-enterprise."
"He's going along that path, but we just need to find someone to help," said Pompa-Craven, who noted the Regional Center of Orange County in 2007 provided services to 2,700 people diagnosed with autism.
Yet, unlike many of those who have been treated for the disease since childhood, Gannon wasn't diagnosed until he was 27 years old.
"Autism wasn't part of the English language when Joseph was growing up," Daralyn said. "He had a speech impairment, auditory discrimination and he could read, but didn't understand the meaning of words."
Gannon's parents took him to behavior modification classes at the Child Guidance Center in Fullerton, but Gannon didn't adjust to the program.
In the second grade, he couldn't handle the structure and confusion.
He was enrolled in the UCI live-in program that Daralyn said, "was a disaster."
"Joseph was tormented emotionally," she said. "When he went back to Commonwealth School, teacher Katie Reitzel took an interest. But classmates chose Joseph last on the team."
Gannon's father, Gerald, who is a math instructor at Cal State Fullerton, tried to help find a campus job for his son.
But that didn't work out.
The bewildered student attended Fullerton College, Orange Coast College Culinary Arts and worked in fast-food industry.
"Food services were frustrating because of the number of people who come in – and all the noise," Gannon recalled.
And even though he dislikes confusion, his favorite hobby is going to Disneyland.
Finally, at age 27, Gannon met his mother's friend who works with autistic students in the Placentia-Yorba Linda School District. She maintained it was autism, and recommended Gannon be tested.
The friend was right.
Several agencies stepped into the picture and provided some help. Eventually, it was the Easter Seals Autism Services that took a strong interest in Gannon's case.
He works several days a week at a small department store in Placentia. Easter Seals provides a job coach who works right alongside Gannon every minute of the work day.
The rest of the week, the skilled computer expert retreats to his home office where he enjoys computer programming, watching DVDs and listening to music.
"I just need somebody to help me get started in my own business," Gannon said. "I know I could handle everything."
And it would be in a quiet, non-threatening environment.
Autistic adult is an entrepreneur
Matthew Morreale, thought to be 1st local example of statewide trend, operates 1-man shredding business.
By SAM MILLER
The Orange County Register
Matthew Morreale's goals are simple. He wants to go to Disney theme parks in Paris, in Tokyo, in Orlando – so he works.
His mom hopes for more. She dreams of independence for her autistic son. She imagines that he someday will live in his own apartment, earning enough money to pay for it himself. She wouldn't worry so much about dying someday if she knew Matthew could do all that.
As the autism boom ages its way through the education system, thousands of Orange County children with autism will soon enter adulthood. Matthew Morreale, 24, could help answer a question that vexes advocates, politicians and parents of autistic children: Can we help these adults be more than a tax burden?
Matthew is thought to be the first local example of a statewide trend. He runs a microenterprise, a small niche business that can be launched with minimal funding yet make a steady profit.
There are adults with developmental disabilities running mall kiosks and selling hand-made bags. They own floral businesses and they stage puppet shows for children's parties.
Matthew runs the Matthew James Co., a shredding business that began this year with a single client but is already looking to hire additional employees. His brochure promises that he'll "shred the competition."
"Self-sufficiency and independence means not only lessening the impact on the budget, so they don't have to rely on social supports," said Dorsey Griffith, a spokeswoman for the state's department of developmental services. "These people are good workers, and they're happier when they're working and they're part of the community."
The growing prevalence of autism in Orange County schools is striking. There are 156 students who are 17 and have autism – a 500 percent increase from just six year ago.
Go down the line a few grades and the numbers grow. There are 334 students who are 11 years old with autism. Among 5-year-olds, the number is 507.
When Matthew was diagnosed at age 5, he was one of only a few in Orange County, and his future looked bleak.
He threw tantrums to the point that his mother, Marthe Morreale, wouldn't take him out in public. He couldn't shower alone until well into his teen years.
"You just go down this dark road of, oh my gosh, there's no future for this boy," Marthe Morreale said. "At that age, you aren't thinking future. It was hard thinking about 10 years' time when you can't get through the next 10 minutes."
With the help of some patient and strong-willed aides, Matthew calmed down during his teenage years. After high school, his job coach, Cassandra Novak, helped him get a retail job at a clothing store.
He enjoyed it, but grew frustrated that he couldn't get more hours. Novak, who is the microenterprise business development manager at Goodwill of Orange County, suggested he start his own business.
His first client was Atria Woodbridge, a senior living center in Irvine. Once a week he takes his shredder – about waist-high, and about 50 pounds – and shreds junk mail, old bills and business documents for residents and staff.
The center always has a cold Coke waiting for him. Residents sometimes come by to talk to him, though Matthew isn't very verbal with strangers. His mom drives him there but is forbidden from his workplace. "He's very independent," she said.
"He's the type of young man I'd like to have volunteer here, because he's a good listener and he takes an interest in the conversations," said Ladd Roberts, executive director of Atria Woodbridge.
In August, he'll expand to serve the Regional Center of Orange County, which has also helped provide startup support for his business. He'll shred thousands of pounds of center documents using Goodwill's industrial-sized shredding machines.
"He's for real, the real deal," said Bill Bowman, chief executive officer of the center, a state-funded organization that provides services and support for people with developmental disabilities. "They meet our very high confidentiality requirements."
His job coach was worried about the noise from the larger shredders. Like many people with autism, Matthew is sensitive to loud and unfamiliar noises, Novak said.
No problem, he told Novak. "When we're making noise, we're making money."
Novak and Matthew are considering hiring other developmentally disabled adults to help. Novak says he could eventually make $3,000 a month.
That income is a big deal to people with developmental disabilities, said Joe Meadours, executive director of People First, an advocacy group run by developmentally disabled adults.
"People are getting sick of getting paid nothing," he said. "How can we make a career earning 50 cents an hour?"
For Matthew, the money means fulfilling his own dreams of taking his family to Disney theme parks around the world. For now, he has to be content with his weekly visits to Disneyland on his days off.
"You know, if you think about it, that's probably as legitimate a goal as you and I have in our lives," Roberts said. "And he may come closer to realizing it before we do."
By SAM MILLER
The Orange County Register
Matthew Morreale's goals are simple. He wants to go to Disney theme parks in Paris, in Tokyo, in Orlando – so he works.
His mom hopes for more. She dreams of independence for her autistic son. She imagines that he someday will live in his own apartment, earning enough money to pay for it himself. She wouldn't worry so much about dying someday if she knew Matthew could do all that.
As the autism boom ages its way through the education system, thousands of Orange County children with autism will soon enter adulthood. Matthew Morreale, 24, could help answer a question that vexes advocates, politicians and parents of autistic children: Can we help these adults be more than a tax burden?
Matthew is thought to be the first local example of a statewide trend. He runs a microenterprise, a small niche business that can be launched with minimal funding yet make a steady profit.
There are adults with developmental disabilities running mall kiosks and selling hand-made bags. They own floral businesses and they stage puppet shows for children's parties.
Matthew runs the Matthew James Co., a shredding business that began this year with a single client but is already looking to hire additional employees. His brochure promises that he'll "shred the competition."
"Self-sufficiency and independence means not only lessening the impact on the budget, so they don't have to rely on social supports," said Dorsey Griffith, a spokeswoman for the state's department of developmental services. "These people are good workers, and they're happier when they're working and they're part of the community."
The growing prevalence of autism in Orange County schools is striking. There are 156 students who are 17 and have autism – a 500 percent increase from just six year ago.
Go down the line a few grades and the numbers grow. There are 334 students who are 11 years old with autism. Among 5-year-olds, the number is 507.
When Matthew was diagnosed at age 5, he was one of only a few in Orange County, and his future looked bleak.
He threw tantrums to the point that his mother, Marthe Morreale, wouldn't take him out in public. He couldn't shower alone until well into his teen years.
"You just go down this dark road of, oh my gosh, there's no future for this boy," Marthe Morreale said. "At that age, you aren't thinking future. It was hard thinking about 10 years' time when you can't get through the next 10 minutes."
With the help of some patient and strong-willed aides, Matthew calmed down during his teenage years. After high school, his job coach, Cassandra Novak, helped him get a retail job at a clothing store.
He enjoyed it, but grew frustrated that he couldn't get more hours. Novak, who is the microenterprise business development manager at Goodwill of Orange County, suggested he start his own business.
His first client was Atria Woodbridge, a senior living center in Irvine. Once a week he takes his shredder – about waist-high, and about 50 pounds – and shreds junk mail, old bills and business documents for residents and staff.
The center always has a cold Coke waiting for him. Residents sometimes come by to talk to him, though Matthew isn't very verbal with strangers. His mom drives him there but is forbidden from his workplace. "He's very independent," she said.
"He's the type of young man I'd like to have volunteer here, because he's a good listener and he takes an interest in the conversations," said Ladd Roberts, executive director of Atria Woodbridge.
In August, he'll expand to serve the Regional Center of Orange County, which has also helped provide startup support for his business. He'll shred thousands of pounds of center documents using Goodwill's industrial-sized shredding machines.
"He's for real, the real deal," said Bill Bowman, chief executive officer of the center, a state-funded organization that provides services and support for people with developmental disabilities. "They meet our very high confidentiality requirements."
His job coach was worried about the noise from the larger shredders. Like many people with autism, Matthew is sensitive to loud and unfamiliar noises, Novak said.
No problem, he told Novak. "When we're making noise, we're making money."
Novak and Matthew are considering hiring other developmentally disabled adults to help. Novak says he could eventually make $3,000 a month.
That income is a big deal to people with developmental disabilities, said Joe Meadours, executive director of People First, an advocacy group run by developmentally disabled adults.
"People are getting sick of getting paid nothing," he said. "How can we make a career earning 50 cents an hour?"
For Matthew, the money means fulfilling his own dreams of taking his family to Disney theme parks around the world. For now, he has to be content with his weekly visits to Disneyland on his days off.
"You know, if you think about it, that's probably as legitimate a goal as you and I have in our lives," Roberts said. "And he may come closer to realizing it before we do."
Friday, June 6, 2008
My special brother by Alison Kennedy
Matthew spent his first years cocooned in his own little world. He had been a very happy and forward baby, but at six months, following his whooping cough (three in one) vaccination, he had a convulsion. More convulsions followed, and it soon became obvious that these had been only the beginning of what were to be further problems. When autism was finally diagnosed, my parents were told it was unlikely that Matthew would ever be able to communicate properly or form relationships with people; co-ordination would always be a problem and it was unlikely he would be able to hold down a job. It was probable he would be locked in his own world for the rest of his life.
Communicating with him was a big problem for him and for us, and, after many years of frustration on both sides, the barriers were broken down due to his exceptional gifts in art and music. Through these languages we came to understand and communicate with him, and he with us. We found Matthew.
In the early days his drawings had been the invitation into his little world, an invitation his psychiatrist accepted. In nearly every drawing there was a little boy with a mass of curly hair, and through these sketches it became possible to talk to the boy within. There were also his obsessions. We always reassured these insecurities and phobias by our acknowledging them - even if it meant visiting every toilet in every house or building so that Matthew could flush the chain before feeling relaxed in the unfamiliar surroundings. And then, when he was 14, there was an obsession for John Denver's music.
It was this obsession that led to his most valuable gift of communication being unleashed. I started to teach him the guitar, a task that at the time seemed impossible due to his lack of co-ordination and academic ability, but in time he began excel. He has perfect pitch and we discovered that he could imitate any chord or sound he heard. With John Denver's recordings to guide him he soon knew more chord formations than I knew existed.
Today, Matthew communicates best through his music. It is when people see him entertain that they see the Matthew our family know and love. He sings, plays the guitar and writes songs, and it is in this way that HCPT (Handicapped Children's Pilgrimage Trust) asked him to help. He has been going to Lourdes with them as a helper for the past 16 years providing the music at mass and entertaining pilgrims during the evenings. The cassette 'Through the eyes of them' was the result of this association, with the title song written by Matthew - the words portraying his own personal experience of handicap.
After attending the local Catholic primary school, he had gone to a special school for children with learning difficulties. Unfortunately, at the age of 16, he had to leave the school as there was no provision for him to continue his education through the education system; although he did manage to obtain a place on a gardening course. Since completing the course, he has been employed by the local council as a gardener/caretaker/waiter at one of their conference centres and several years ago returned to education through the Adult Literacy Programme run by the local community college. He works hard at his lessons and homework and each year sits the exams with much-deserved success. It is his own determination to self-educate that keeps him going. We see with it a continued growth in confidence (along with a wall full of framed certificates).
Matthew, now 40, lives at home with mum (dad died 13 years ago). He has proved, when she has been on holiday, or away visiting my sister in America, that he can cope with the home and with looking after himself. In lots of ways he is more independent and capable than many young men (and husbands!) of his age. He still has a few of the mannerisms and insecurities characteristic of autism, but he is in control of these and they are only recognisable to those of us who know him well. He is thoughtful, affectionate and caring and a lovely uncle to his nieces and nephews.
The original advice and prognosis my parents were given was hopeless: they were even advised to send him away to a special unit in Scotland that cared for "children like him", and "forget him". My sisters and I are so glad they didn't take the advice. It has definitely not been easy, yet Matthew has received all the care he needed to survive from his immediate family and his extended family at church. There have been many wonderful people in his life, family and friends within our parish who gave support to Matthew and to my parents at what have been sometimes very desperate times. The support has been both in prayer and in practical help, and we shall always be grateful.
In acknowledgment of this support I always want to share Matthew's story with others, as an encouragement to their particular handicap. Indeed, there are so many memories and stories to share that "I could write a book", as the saying goes. But there will be no need, because Matthew has already started writing his autobiography. The opening chapters make enlightening reading and, with his determination to complete what he starts, I know that one day it will not be my words but Matthew's that inspire others.
As a family, we would all agree that it is impossible to claim any one particular activity, person or occasion unlocked the door to Matthew's world, as there has been so many from which to choose. In the many dedicated years of love and prayers, little steps were taken and little successes achieved. Yet these years have also seen countless rewards, and Matthew is someone whom we feel privileged to have been given. Through learning to understand and help him we have discovered so much about ourselves and what is important in our lives. For me the importance of communication has become my focus, and helping people to communicate faith through their gifts and talents has become my vocation and my work.
I shall always be grateful to Matthew for all he has taught me. He is a very special brother.
By Alison Kennedy
alison@watermeadapostolate.co.uk
Communicating with him was a big problem for him and for us, and, after many years of frustration on both sides, the barriers were broken down due to his exceptional gifts in art and music. Through these languages we came to understand and communicate with him, and he with us. We found Matthew.
In the early days his drawings had been the invitation into his little world, an invitation his psychiatrist accepted. In nearly every drawing there was a little boy with a mass of curly hair, and through these sketches it became possible to talk to the boy within. There were also his obsessions. We always reassured these insecurities and phobias by our acknowledging them - even if it meant visiting every toilet in every house or building so that Matthew could flush the chain before feeling relaxed in the unfamiliar surroundings. And then, when he was 14, there was an obsession for John Denver's music.
It was this obsession that led to his most valuable gift of communication being unleashed. I started to teach him the guitar, a task that at the time seemed impossible due to his lack of co-ordination and academic ability, but in time he began excel. He has perfect pitch and we discovered that he could imitate any chord or sound he heard. With John Denver's recordings to guide him he soon knew more chord formations than I knew existed.
Today, Matthew communicates best through his music. It is when people see him entertain that they see the Matthew our family know and love. He sings, plays the guitar and writes songs, and it is in this way that HCPT (Handicapped Children's Pilgrimage Trust) asked him to help. He has been going to Lourdes with them as a helper for the past 16 years providing the music at mass and entertaining pilgrims during the evenings. The cassette 'Through the eyes of them' was the result of this association, with the title song written by Matthew - the words portraying his own personal experience of handicap.
After attending the local Catholic primary school, he had gone to a special school for children with learning difficulties. Unfortunately, at the age of 16, he had to leave the school as there was no provision for him to continue his education through the education system; although he did manage to obtain a place on a gardening course. Since completing the course, he has been employed by the local council as a gardener/caretaker/waiter at one of their conference centres and several years ago returned to education through the Adult Literacy Programme run by the local community college. He works hard at his lessons and homework and each year sits the exams with much-deserved success. It is his own determination to self-educate that keeps him going. We see with it a continued growth in confidence (along with a wall full of framed certificates).
Matthew, now 40, lives at home with mum (dad died 13 years ago). He has proved, when she has been on holiday, or away visiting my sister in America, that he can cope with the home and with looking after himself. In lots of ways he is more independent and capable than many young men (and husbands!) of his age. He still has a few of the mannerisms and insecurities characteristic of autism, but he is in control of these and they are only recognisable to those of us who know him well. He is thoughtful, affectionate and caring and a lovely uncle to his nieces and nephews.
The original advice and prognosis my parents were given was hopeless: they were even advised to send him away to a special unit in Scotland that cared for "children like him", and "forget him". My sisters and I are so glad they didn't take the advice. It has definitely not been easy, yet Matthew has received all the care he needed to survive from his immediate family and his extended family at church. There have been many wonderful people in his life, family and friends within our parish who gave support to Matthew and to my parents at what have been sometimes very desperate times. The support has been both in prayer and in practical help, and we shall always be grateful.
In acknowledgment of this support I always want to share Matthew's story with others, as an encouragement to their particular handicap. Indeed, there are so many memories and stories to share that "I could write a book", as the saying goes. But there will be no need, because Matthew has already started writing his autobiography. The opening chapters make enlightening reading and, with his determination to complete what he starts, I know that one day it will not be my words but Matthew's that inspire others.
As a family, we would all agree that it is impossible to claim any one particular activity, person or occasion unlocked the door to Matthew's world, as there has been so many from which to choose. In the many dedicated years of love and prayers, little steps were taken and little successes achieved. Yet these years have also seen countless rewards, and Matthew is someone whom we feel privileged to have been given. Through learning to understand and help him we have discovered so much about ourselves and what is important in our lives. For me the importance of communication has become my focus, and helping people to communicate faith through their gifts and talents has become my vocation and my work.
I shall always be grateful to Matthew for all he has taught me. He is a very special brother.
By Alison Kennedy
alison@watermeadapostolate.co.uk
My life as a ten-year-old with Asperger syndrome
Hi, my name is Charlotte Gilgallon. I am ten years old, and I have Asperger syndrome.
Throughout my life, before knowing I had Asperger's, I always knew something was different about me but I did not know what it was. I was about seven years old when I found out I had Asperger's - but I only remember going into an office and my mum talking to a lady. Afterwards I started to ask questions. My mum answered them but I did not have a clue what she was saying.
My parents found out about my Asperger's when I was six. Now I am older I can understand about it. I am having problems making friends at my school. Sometimes I can be a little hyper in school and I try too hard to make friends. It feels like they already know and are bullying me about it. They make me feel like I'm a fly and they trap me in a bottle making me feel horrible. I sometimes have a few moments when I feel like I wish I never had it. But that cannot be, so that was the part that made me upset.
I have many friends that know about it and I feel that if I told the people I know really well that do not know about it they might treat me different. I am happy to share all my feelings with whoever reads this cuz I know you will understand.
I think that it was a good thing my mum told me about my Asperger syndrome because I would always come home from school and say to my mum, 'I feel different. Other children at school are not what I am like.'
Sometimes people tell my mum 'Should you have ever told your daughter she has Asperger syndrome?' and I say 'Yes, my mum should have told me' because if she hadn't told me, then I wouldn't understand a lot of stuff. I have a very happy life. I live in a nice house, with a garden, have two good sisters and a good mum and dad.
by Charlotte Gilgallon
Throughout my life, before knowing I had Asperger's, I always knew something was different about me but I did not know what it was. I was about seven years old when I found out I had Asperger's - but I only remember going into an office and my mum talking to a lady. Afterwards I started to ask questions. My mum answered them but I did not have a clue what she was saying.
My parents found out about my Asperger's when I was six. Now I am older I can understand about it. I am having problems making friends at my school. Sometimes I can be a little hyper in school and I try too hard to make friends. It feels like they already know and are bullying me about it. They make me feel like I'm a fly and they trap me in a bottle making me feel horrible. I sometimes have a few moments when I feel like I wish I never had it. But that cannot be, so that was the part that made me upset.
I have many friends that know about it and I feel that if I told the people I know really well that do not know about it they might treat me different. I am happy to share all my feelings with whoever reads this cuz I know you will understand.
I think that it was a good thing my mum told me about my Asperger syndrome because I would always come home from school and say to my mum, 'I feel different. Other children at school are not what I am like.'
Sometimes people tell my mum 'Should you have ever told your daughter she has Asperger syndrome?' and I say 'Yes, my mum should have told me' because if she hadn't told me, then I wouldn't understand a lot of stuff. I have a very happy life. I live in a nice house, with a garden, have two good sisters and a good mum and dad.
by Charlotte Gilgallon
Stan's world
The life of an adult with autism How Stan copes with everyday life
Adam Shemper
I want to write about my hectic life, and yet nothing is happening in my life. It's inside a volcano. A hole in a donut like tangled yarn is my life. -- From Stan's journal .
The walk
It is a walk psychologists and neurologists note as characteristic of his autism, his Asperger's syndrome, his obsessive compulsive disorder, or whatever diagnosis they had given him ever since he'd been born blue and unbreathing in 1972 in Kharkov, Ukraine. It is a walk that, in a way, describes Stan Litmanovich's whole life.
He simultaneously moves in two directions. His upper body struts chicken- like, and his arms swing out wide. He rocks into each step, his large belly pitching forward like a watermelon. He drags his right foot, the heel of which was broken at his difficult birth. He carries the foot as if it were the heaviest part of him.
He is a peculiar form plodding down the sidewalk, his mind on the task of getting where he is going and making sense of the world of objects.
"When I walk, I look at the people, and I think they are living in a life, " Stan says. "I think, I could be participating in life. I think lots of things. I think how to cross the street, how not to get hit, how I can get more independent."
Stan, 32, lives in a San Francisco group home. He is one of an estimated 35,000 people in California with an autistic disorder and one of many adults in the Bay Area who struggle for support.
Autism has increased dramatically in the state over the last decade, and although there are now more than 20,000 people receiving state assistance, Stan is not one of them. His brain disorder is complicated and not considered to be severe enough by state doctors to warrant services. He is dependent on city mental health care and his ailing, elderly mother. Mostly, Stan has to navigate his disorder alone.
He can walk only between two known places. He goes only where he is trained to go: from his psychologist's office to his mother's house to the corner store and café. As he rocks into each step, he checks in constantly with the landmarks, the signs he memorized to make his world familiar. But he can't expand the maps others have drawn for him. There are invisible fences everywhere.
Diagnosis
I'm having a hard time writing (redundant) communication. That is bad. What is good? I'm going to a conference on autism. And what may be equally or more good, I have a journalist interviewing me for my life story. The rest is difficult for me. -- From Stan's journal.
From that first moment in a Kharkov hospital when doctors told his mother he was brain damaged, had "mild cerebral palsy" and "scoliosis of the spine," the problem was the diagnosis. As time went on, as the first generalized convulsions hit at six weeks, as the first words and baby steps were delayed for more than a year, as he rarely ate or insisted on drinking water from rain puddles and threw violent tantrums, the problem always came back to the same thing: the lack of a satisfying, definitive diagnosis.
"My diagnosis is even trickier than my history" is Stan's assessment. Like the landmarks on the street, he needs a specific diagnosis to orient himself. He needs it to know where he's starting from and where he's going, but he needs it for practical reasons as well.
Without a clear diagnosis he has little chance of being accepted into San Francisco's Golden Gate Regional Center, one of 21 state-funded care facilities providing programs for people with developmental disabilities such as cerebral palsy, mental retardation and autism. Only state support, he believes, will help solve his problems. "I want to create an army of circumstances," he says, "to arm myself to have a good life."
Since his family doctor told him in 1989 that he might have an autistic disorder, he has taken autism to be the label that best describes his condition, even though the conclusions of other doctors who have treated him defy this categorization.
If only it were simpler to meet the autistic criteria: severe impairment in social interaction, a marked inability to initiate or sustain conversation, compulsive routines or rituals and repetitive motor movements, and preoccupations with parts of objects that gets in the way of grasping the whole. But Stan, hardly easy to describe -- his case complicated by the record of his mental problems like schizophrenia -- has already been denied care twice by the regional center.
On weekends, when Stan visits his mother, he often pulls the scrambled documents of his diagnostic history from an accordion-like folder he keeps beneath a coffee table in her apartment in San Francisco's Richmond District. "I like writings, because it kind of organizes what people think of me," he says.
He looks down at scattered papers in front of his crossed legs. In them doctors from all over the world have recorded evidence of microcephaly, convulsive disorder, organic mood disorder, obsessive compulsive disorder, depression, mild retardation, schizophrenia, attention deficit disorder, psychosis (not otherwise specified) and Asperger's syndrome, autistic disorder and pervasive developmental disorder (not otherwise specified).
Stan says: "I guess, if I say I'm autistic, I'm part of a bigger category called pervasive developmental disorder. And I'm part of a small category, maybe learning disabled or a brain disorder or something. I don't know how to categorize it properly." .
Mother
Since I was 12, I've been in the middle between my mother and the professionals. I don't know how to act. And even if they told me how to act one way, I would have a difficult time doing it, due to my disability, due to my lack of comprehension, due to my incorporational difficulty, like a coordinational difficulty, like with the body-mind and my environment. -- From an interview with Stan.
Inga is 72, suffering from a bad thyroid, too old and sick to keep caring for him even though she's never stopped trying. She's carried him around the world her whole life: to Rome in 1978, where Stan obsessively rode elevators, flipped light switches and banged the walls of apartment buildings long and hard enough to always get them kicked out; to Philadelphia for a year; to San Francisco, where still there was no success in finding Stan the proper care, the good education she imagined for him; only Stan moving through a maze of crisis centers, hospitals, half-way houses and group homes.
Then they went to India, where they lived for three years in the ashrams of a popular guru named Sai Baba, until she figured things with Stan were worse (or at least no better) and followed the advice of a close devotee and tried Sweden, which had a well-known clinic for the developmentally disabled, but they were unable to obtain citizenship papers and were forced to return to Philadelphia and another school that specialized in teaching children with autism. (Stan said of this, "I was supposed to stay there three weeks for some kind of trial, then they kicked me out, because I had holey underwear, underwear with holes. I did not change clothes").
Having traveled the globe, they found themselves back in San Francisco, just the two of them again.
He had no friends, had never had a date or a partner. After school, in the afternoons, the only place to go was his mother's small studio, where he paced or sat rocking in the bed, talking to her about chess, computers and mathematical concepts like infinity. She still prepared dinners for him, or they went out for fried chicken and pizza, the fast food he most trusted, or she took him to the bookstore -- all those books to skim before his mind drifted and lost the assembly of variegated information. And she took him grocery shopping, Stan always walking in that odd way, like a lilting pigeon, far out in front of her. .
The house
Due to culture reasons, and my own reasons that I'm disabled, I think I have a right to stay with my mother. -- From an interview with Stan.
Four years earlier, he had moved out of his mother's apartment for the last time, to walk a different path. He lives now in a boarding house on McAllister Street, which costs him more than $800 a month (even with a city subsidy), among 14 other men and women with varying degrees of mental retardation and various kinds of neurological problems, some undoubtedly no less indeterminately diagnosed.
He spent many nights frozen and crying in his bed. Often, his nights were sleepless. "I'm having noises in my head," was the way he put it. There is the loud clicking and clanking of the radiator, the incessant murmur of the downstairs television, his roommate's always-on radio and the tweaking smoke alarm. Loud noises had always disturbed and frightened him.
"There's a lot of these inserted issues," Stan says.
If he cannot live with his mother, then he hopes for someplace where there are no bars on the window or a locked iron gate for a front door, a place that doesn't make him feel like a prisoner in a foreign country. He has many fears:
"If my mother dies, I might end up homeless. I might end up in jail. I might lose my temper. I'm not really a bad person. It's just I can't rely on my mother. I can't rely on the social worker. I can't rely on the system. Some people say turn to God, but that's just too abstract for me. You don't pray to God to go the bathroom." .
Psychotherapist
I want to learn about schemas, and theories about assimilation, accommodation, equilibrium. I kind of read it from a psychology book. And I feel that's very much me.
-- From an interview with Stan.
He follows his psychotherapist, Natasha Kasanov, down the hallway toward her office, his arms flailing, his head bowed.
"My work with Stan is on the level of helping him be more independent," his therapist says. In the past, she says, she treated his mother, Inga, for depression. She has known Stan a long time. "I think he can be trained to live in an independent situation," she says. "But Inga is extremely fearful whenever this topic comes up. She often wonders what will happen to Stan when she dies."
Stan sits near the window, light leaking through the half-closed blinds. On a table in the far corner is a stone water fountain with no water flowing.
"I want to say two things about becoming independent of my mother," Stan says to his therapist. "One is letting go, and one is knowing where to step. Like you don't go into a dark forest in a war, if you're a soldier, without being trained as a soldier. If I haven't been trained to shoot, then I don't know how to take care of myself in the forest when I'm being attacked. I sometimes feel like my mother could've trained me better when I was younger. She could've trained me like a mild soldier, so that I could reach an equilibrium."
He comes to Kasanov's office in San Francisco twice a month, to talk like anyone talks to a therapist, although it's more difficult for him to express himself in those 50 minutes. How could he ever say all the things that are wrong with his life? To describe that life and what's missing from it is almost impossible. It would, as Stan says, take to infinity. .
Laundry day
I want to write about organizing my things and experiences. The first thing is my clothes. The second is my papers and books. The third thing is my food. The fourth thing is communicating ideas and thoughts to people. I get disorganized and nervous.
-- From Stan's journal.
He always wore the same sweat suit. Most days he refused to shower. He often smelled like sulfur and wet mulch. He had never learned to do his laundry until the staff at the Recreational Center for the Handicapped, where he spends his days, taught him last year.
"I have a survival instinct," Stan says. "But not that I could survive if I was dropped off in the middle of nowhere. Like I dropped you off in the middle of China, that's what it would be like for me in the middle of San Francisco without any help."
One Friday, his duffel bag dragging the floor, he opens the laundry room door and finds the washing machine closed, but not on, and the dryer cycling with someone else's clothes. He pauses for a moment. "I guess I can't do my laundry," he says, without opening the washer.
An hour later, when he returns, the laundry closet is hot and steamy. He studies the two machines, as if he hasn't seen them before. He flips up the washing-machine lid and hovers over it, inspecting. There is nothing inside. "I think someone is trying to trick me," he says.
He opens the warm dryer and peers inside as if into a great problem. A kinked heap of clothes needs to be extracted. After a minute he bends down, and gathers the bundle to his body, then clumsily piles it on top of the dryer. He shuffles over to the washer, stares down again and begins counting his clothes one-by-one before stuffing them inside. .
Phone
It sounds good to a normal person, that I should get independence from my mother, because eventually you have to move out and be on your own, because eventually your mother will die. And it's kind of like my mother is autistic, but culturally autistic. I don't know how to explain it. I feel like my mother doesn't know about the modern life, and all the system. And I don't know it either, because I'm in the shell of my mother. Kind of like, I don't know how to explain it, in the cave of my mother.
-- From an interview with Stan.
He waits in the dark to use the pay phone to call his mother, the way he does every night when he arrives here in his neighborhood. He stands in front of the convenience store on the corner of McAllister, leaning on one foot, then the other, as if it were too painful to stand still.
A man, smoking a cigarette, talks on one of the two pay phones near the store window. Though the other is free, Stan keeps his distance, rocking on his heels, his soft sweat suit pocket jingling with quarters. He stares blankly into the dark street.
As soon as the man leaves, Stan steps into the blue light radiating from the store's neon beer signs. He picks up the receiver the man didn't use, bends down and considers the configuration of buttons. His task, as always, is to remember the sequence of his mother's phone number.
"Yeah, yeah, I made it," he says. "I'm here." He pauses, his head bowed, listening to her. That voice, for better or worse, his only reliable compass.
"Good night," he finally whispers. "And I bless you."
He hangs up, checks the receiver in the cradle, before he ambles down the street and underneath the matrix of scaffolding built over the door to that house that never felt like home.
Adam Shemper
I want to write about my hectic life, and yet nothing is happening in my life. It's inside a volcano. A hole in a donut like tangled yarn is my life. -- From Stan's journal .
The walk
It is a walk psychologists and neurologists note as characteristic of his autism, his Asperger's syndrome, his obsessive compulsive disorder, or whatever diagnosis they had given him ever since he'd been born blue and unbreathing in 1972 in Kharkov, Ukraine. It is a walk that, in a way, describes Stan Litmanovich's whole life.
He simultaneously moves in two directions. His upper body struts chicken- like, and his arms swing out wide. He rocks into each step, his large belly pitching forward like a watermelon. He drags his right foot, the heel of which was broken at his difficult birth. He carries the foot as if it were the heaviest part of him.
He is a peculiar form plodding down the sidewalk, his mind on the task of getting where he is going and making sense of the world of objects.
"When I walk, I look at the people, and I think they are living in a life, " Stan says. "I think, I could be participating in life. I think lots of things. I think how to cross the street, how not to get hit, how I can get more independent."
Stan, 32, lives in a San Francisco group home. He is one of an estimated 35,000 people in California with an autistic disorder and one of many adults in the Bay Area who struggle for support.
Autism has increased dramatically in the state over the last decade, and although there are now more than 20,000 people receiving state assistance, Stan is not one of them. His brain disorder is complicated and not considered to be severe enough by state doctors to warrant services. He is dependent on city mental health care and his ailing, elderly mother. Mostly, Stan has to navigate his disorder alone.
He can walk only between two known places. He goes only where he is trained to go: from his psychologist's office to his mother's house to the corner store and café. As he rocks into each step, he checks in constantly with the landmarks, the signs he memorized to make his world familiar. But he can't expand the maps others have drawn for him. There are invisible fences everywhere.
Diagnosis
I'm having a hard time writing (redundant) communication. That is bad. What is good? I'm going to a conference on autism. And what may be equally or more good, I have a journalist interviewing me for my life story. The rest is difficult for me. -- From Stan's journal.
From that first moment in a Kharkov hospital when doctors told his mother he was brain damaged, had "mild cerebral palsy" and "scoliosis of the spine," the problem was the diagnosis. As time went on, as the first generalized convulsions hit at six weeks, as the first words and baby steps were delayed for more than a year, as he rarely ate or insisted on drinking water from rain puddles and threw violent tantrums, the problem always came back to the same thing: the lack of a satisfying, definitive diagnosis.
"My diagnosis is even trickier than my history" is Stan's assessment. Like the landmarks on the street, he needs a specific diagnosis to orient himself. He needs it to know where he's starting from and where he's going, but he needs it for practical reasons as well.
Without a clear diagnosis he has little chance of being accepted into San Francisco's Golden Gate Regional Center, one of 21 state-funded care facilities providing programs for people with developmental disabilities such as cerebral palsy, mental retardation and autism. Only state support, he believes, will help solve his problems. "I want to create an army of circumstances," he says, "to arm myself to have a good life."
Since his family doctor told him in 1989 that he might have an autistic disorder, he has taken autism to be the label that best describes his condition, even though the conclusions of other doctors who have treated him defy this categorization.
If only it were simpler to meet the autistic criteria: severe impairment in social interaction, a marked inability to initiate or sustain conversation, compulsive routines or rituals and repetitive motor movements, and preoccupations with parts of objects that gets in the way of grasping the whole. But Stan, hardly easy to describe -- his case complicated by the record of his mental problems like schizophrenia -- has already been denied care twice by the regional center.
On weekends, when Stan visits his mother, he often pulls the scrambled documents of his diagnostic history from an accordion-like folder he keeps beneath a coffee table in her apartment in San Francisco's Richmond District. "I like writings, because it kind of organizes what people think of me," he says.
He looks down at scattered papers in front of his crossed legs. In them doctors from all over the world have recorded evidence of microcephaly, convulsive disorder, organic mood disorder, obsessive compulsive disorder, depression, mild retardation, schizophrenia, attention deficit disorder, psychosis (not otherwise specified) and Asperger's syndrome, autistic disorder and pervasive developmental disorder (not otherwise specified).
Stan says: "I guess, if I say I'm autistic, I'm part of a bigger category called pervasive developmental disorder. And I'm part of a small category, maybe learning disabled or a brain disorder or something. I don't know how to categorize it properly." .
Mother
Since I was 12, I've been in the middle between my mother and the professionals. I don't know how to act. And even if they told me how to act one way, I would have a difficult time doing it, due to my disability, due to my lack of comprehension, due to my incorporational difficulty, like a coordinational difficulty, like with the body-mind and my environment. -- From an interview with Stan.
Inga is 72, suffering from a bad thyroid, too old and sick to keep caring for him even though she's never stopped trying. She's carried him around the world her whole life: to Rome in 1978, where Stan obsessively rode elevators, flipped light switches and banged the walls of apartment buildings long and hard enough to always get them kicked out; to Philadelphia for a year; to San Francisco, where still there was no success in finding Stan the proper care, the good education she imagined for him; only Stan moving through a maze of crisis centers, hospitals, half-way houses and group homes.
Then they went to India, where they lived for three years in the ashrams of a popular guru named Sai Baba, until she figured things with Stan were worse (or at least no better) and followed the advice of a close devotee and tried Sweden, which had a well-known clinic for the developmentally disabled, but they were unable to obtain citizenship papers and were forced to return to Philadelphia and another school that specialized in teaching children with autism. (Stan said of this, "I was supposed to stay there three weeks for some kind of trial, then they kicked me out, because I had holey underwear, underwear with holes. I did not change clothes").
Having traveled the globe, they found themselves back in San Francisco, just the two of them again.
He had no friends, had never had a date or a partner. After school, in the afternoons, the only place to go was his mother's small studio, where he paced or sat rocking in the bed, talking to her about chess, computers and mathematical concepts like infinity. She still prepared dinners for him, or they went out for fried chicken and pizza, the fast food he most trusted, or she took him to the bookstore -- all those books to skim before his mind drifted and lost the assembly of variegated information. And she took him grocery shopping, Stan always walking in that odd way, like a lilting pigeon, far out in front of her. .
The house
Due to culture reasons, and my own reasons that I'm disabled, I think I have a right to stay with my mother. -- From an interview with Stan.
Four years earlier, he had moved out of his mother's apartment for the last time, to walk a different path. He lives now in a boarding house on McAllister Street, which costs him more than $800 a month (even with a city subsidy), among 14 other men and women with varying degrees of mental retardation and various kinds of neurological problems, some undoubtedly no less indeterminately diagnosed.
He spent many nights frozen and crying in his bed. Often, his nights were sleepless. "I'm having noises in my head," was the way he put it. There is the loud clicking and clanking of the radiator, the incessant murmur of the downstairs television, his roommate's always-on radio and the tweaking smoke alarm. Loud noises had always disturbed and frightened him.
"There's a lot of these inserted issues," Stan says.
If he cannot live with his mother, then he hopes for someplace where there are no bars on the window or a locked iron gate for a front door, a place that doesn't make him feel like a prisoner in a foreign country. He has many fears:
"If my mother dies, I might end up homeless. I might end up in jail. I might lose my temper. I'm not really a bad person. It's just I can't rely on my mother. I can't rely on the social worker. I can't rely on the system. Some people say turn to God, but that's just too abstract for me. You don't pray to God to go the bathroom." .
Psychotherapist
I want to learn about schemas, and theories about assimilation, accommodation, equilibrium. I kind of read it from a psychology book. And I feel that's very much me.
-- From an interview with Stan.
He follows his psychotherapist, Natasha Kasanov, down the hallway toward her office, his arms flailing, his head bowed.
"My work with Stan is on the level of helping him be more independent," his therapist says. In the past, she says, she treated his mother, Inga, for depression. She has known Stan a long time. "I think he can be trained to live in an independent situation," she says. "But Inga is extremely fearful whenever this topic comes up. She often wonders what will happen to Stan when she dies."
Stan sits near the window, light leaking through the half-closed blinds. On a table in the far corner is a stone water fountain with no water flowing.
"I want to say two things about becoming independent of my mother," Stan says to his therapist. "One is letting go, and one is knowing where to step. Like you don't go into a dark forest in a war, if you're a soldier, without being trained as a soldier. If I haven't been trained to shoot, then I don't know how to take care of myself in the forest when I'm being attacked. I sometimes feel like my mother could've trained me better when I was younger. She could've trained me like a mild soldier, so that I could reach an equilibrium."
He comes to Kasanov's office in San Francisco twice a month, to talk like anyone talks to a therapist, although it's more difficult for him to express himself in those 50 minutes. How could he ever say all the things that are wrong with his life? To describe that life and what's missing from it is almost impossible. It would, as Stan says, take to infinity. .
Laundry day
I want to write about organizing my things and experiences. The first thing is my clothes. The second is my papers and books. The third thing is my food. The fourth thing is communicating ideas and thoughts to people. I get disorganized and nervous.
-- From Stan's journal.
He always wore the same sweat suit. Most days he refused to shower. He often smelled like sulfur and wet mulch. He had never learned to do his laundry until the staff at the Recreational Center for the Handicapped, where he spends his days, taught him last year.
"I have a survival instinct," Stan says. "But not that I could survive if I was dropped off in the middle of nowhere. Like I dropped you off in the middle of China, that's what it would be like for me in the middle of San Francisco without any help."
One Friday, his duffel bag dragging the floor, he opens the laundry room door and finds the washing machine closed, but not on, and the dryer cycling with someone else's clothes. He pauses for a moment. "I guess I can't do my laundry," he says, without opening the washer.
An hour later, when he returns, the laundry closet is hot and steamy. He studies the two machines, as if he hasn't seen them before. He flips up the washing-machine lid and hovers over it, inspecting. There is nothing inside. "I think someone is trying to trick me," he says.
He opens the warm dryer and peers inside as if into a great problem. A kinked heap of clothes needs to be extracted. After a minute he bends down, and gathers the bundle to his body, then clumsily piles it on top of the dryer. He shuffles over to the washer, stares down again and begins counting his clothes one-by-one before stuffing them inside. .
Phone
It sounds good to a normal person, that I should get independence from my mother, because eventually you have to move out and be on your own, because eventually your mother will die. And it's kind of like my mother is autistic, but culturally autistic. I don't know how to explain it. I feel like my mother doesn't know about the modern life, and all the system. And I don't know it either, because I'm in the shell of my mother. Kind of like, I don't know how to explain it, in the cave of my mother.
-- From an interview with Stan.
He waits in the dark to use the pay phone to call his mother, the way he does every night when he arrives here in his neighborhood. He stands in front of the convenience store on the corner of McAllister, leaning on one foot, then the other, as if it were too painful to stand still.
A man, smoking a cigarette, talks on one of the two pay phones near the store window. Though the other is free, Stan keeps his distance, rocking on his heels, his soft sweat suit pocket jingling with quarters. He stares blankly into the dark street.
As soon as the man leaves, Stan steps into the blue light radiating from the store's neon beer signs. He picks up the receiver the man didn't use, bends down and considers the configuration of buttons. His task, as always, is to remember the sequence of his mother's phone number.
"Yeah, yeah, I made it," he says. "I'm here." He pauses, his head bowed, listening to her. That voice, for better or worse, his only reliable compass.
"Good night," he finally whispers. "And I bless you."
He hangs up, checks the receiver in the cradle, before he ambles down the street and underneath the matrix of scaffolding built over the door to that house that never felt like home.
Tuesday, May 27, 2008
Autism doesn't slow student in quest for degree
All the small yet extremely celebrated successes in Chad Winkler's 22 years have led him to his biggest success yet: college graduation.
On May 18, Winkler graduated cum laude from the Missouri University of Science and Technology in Rolla, with a bachelor's degree in ceramic engineering with a minor in history and chemistry.
For the past 18 years he has worked, pushed, struggled and earned each and every one of his successes. From the first time he was able to do a forward roll, to the first time he spoke in front of a crowd of people to now graduating college with honors, Winkler always strived for success.
His battles started at age 4 when he was diagnosed as being autistic.
Then, when he was in fourth grade, he was diagnosed as having Asperger's Syndrome (AS), which is just one part of the spectrum of autism, sometimes referred to as ASD. It is characterized by difficulties in verbal and nonverbal communication.
"Now I'm ready to spread my wings and fly," Winkler said.
And that he will do.
In a few weeks, he will drive his new car and his new puppy to his new apartment in Salem, Ill., where he starts his new job.
"He's an amazing young man," said his mother, Becky Winkler. "He has had to overcome so much in his life and he's successful. I always knew he would be."
Winkler's success in life and college doesn't come as a surprise to his mother. Although she felt a level of personal guilt when he was diagnosed with AS, she knew he was still a child with potential and she never let him forget it.
"Even though others told us he would be nothing more than employable' in a sheltered workshop, we pushed him to do his best," she said. "He did it, and look at him now. It's just amazing to see the man he has grown to be."
Becky said there were times when she made him do things he really didn't want to do.
"We've always tried to treat him as a typical child," Becky said. "If he didn't understand something or he couldn't do something, we would back up and try it a different way."
She encouraged his involvement with 4-H, supported his efforts to raise public awareness of autism through public speaking and taught him to always reach for the stars.
Winkler is a 2004 graduate of Blair Oaks. Growing up with AS and dealing with the disabilities that come with it was not an easy task. Being made fun of by his peers, combined with having to deal with some adults who didn't believe in him, helped push him to succeed.
"It only made me work harder," he said.
"When they would say things like that, it just made me want to do better. It was hard, but I knew I could do it and I did."
Winkler is modest when he talks about the obstacles and hurdles he has overcome. A shoulder shrug and a smile are indicative of his level of pride.
Although he is proud of his accomplishments thus far, he believes no one should set limitations on themselves.
As he packs to leave his family and says goodbye to Jefferson City to spread his wings one more time, Winkler's advice to others who live with autism is simple.
"You just have to work hard," he said. "Just know what you want to do and work hard to do it. Anyone can do it."
For parents of children living with autism, Becky has one piece of advice.
"Treat them like a typical child," she said. "If they don't understand, back up and try it again. All children have the potential - they just need encouragement and guidance."
On May 18, Winkler graduated cum laude from the Missouri University of Science and Technology in Rolla, with a bachelor's degree in ceramic engineering with a minor in history and chemistry.
For the past 18 years he has worked, pushed, struggled and earned each and every one of his successes. From the first time he was able to do a forward roll, to the first time he spoke in front of a crowd of people to now graduating college with honors, Winkler always strived for success.
His battles started at age 4 when he was diagnosed as being autistic.
Then, when he was in fourth grade, he was diagnosed as having Asperger's Syndrome (AS), which is just one part of the spectrum of autism, sometimes referred to as ASD. It is characterized by difficulties in verbal and nonverbal communication.
"Now I'm ready to spread my wings and fly," Winkler said.
And that he will do.
In a few weeks, he will drive his new car and his new puppy to his new apartment in Salem, Ill., where he starts his new job.
"He's an amazing young man," said his mother, Becky Winkler. "He has had to overcome so much in his life and he's successful. I always knew he would be."
Winkler's success in life and college doesn't come as a surprise to his mother. Although she felt a level of personal guilt when he was diagnosed with AS, she knew he was still a child with potential and she never let him forget it.
"Even though others told us he would be nothing more than employable' in a sheltered workshop, we pushed him to do his best," she said. "He did it, and look at him now. It's just amazing to see the man he has grown to be."
Becky said there were times when she made him do things he really didn't want to do.
"We've always tried to treat him as a typical child," Becky said. "If he didn't understand something or he couldn't do something, we would back up and try it a different way."
She encouraged his involvement with 4-H, supported his efforts to raise public awareness of autism through public speaking and taught him to always reach for the stars.
Winkler is a 2004 graduate of Blair Oaks. Growing up with AS and dealing with the disabilities that come with it was not an easy task. Being made fun of by his peers, combined with having to deal with some adults who didn't believe in him, helped push him to succeed.
"It only made me work harder," he said.
"When they would say things like that, it just made me want to do better. It was hard, but I knew I could do it and I did."
Winkler is modest when he talks about the obstacles and hurdles he has overcome. A shoulder shrug and a smile are indicative of his level of pride.
Although he is proud of his accomplishments thus far, he believes no one should set limitations on themselves.
As he packs to leave his family and says goodbye to Jefferson City to spread his wings one more time, Winkler's advice to others who live with autism is simple.
"You just have to work hard," he said. "Just know what you want to do and work hard to do it. Anyone can do it."
For parents of children living with autism, Becky has one piece of advice.
"Treat them like a typical child," she said. "If they don't understand, back up and try it again. All children have the potential - they just need encouragement and guidance."
Autistic boy creates art with paper and scissors
In Wil Kerner's world, happiness and grief and all the feelings that come between are puzzle pieces as alien as the curious construction-paper characters in the art he assembles on his grandmother's living-room carpet.
What the autistic 12-year-old can't express verbally or in social interaction he can show through his carefully cut out geometric shapes assembled into characters in a paper collage, a talent the staff at Seattle's Harborview Medical Center calls a rare artistic gift. Large red circles become heads, delicate strips of fringed white paper become hair, and finely cut arches are shaped into eyebrows.
The art and the artist intrigues those who study autism. Dr. Stephen Dager, interim director of the University of Washington's Autism Center, who has been studying brain anatomy and chemistry in autism, is mystified by Wil's artistic talents. Autistic people generally pay little attention to eyes during social interaction, studies show, and usually are unaware of others' emotions. Yet, Wil has the ability to mimic human emotion through his art.
Wil doesn't understand numbers, has limited speech ability and very limited social skills. He has a brief attention span, tends to be compulsive and doesn't like his routine interrupted, and while he seems oblivious to others' subtle facial expressions, he manages not only to reproduce them but to do so by cutting them out of paper.
EXAMINER.COM RELATED ARTICLES
Teen girl dead in Lynnwood WA
University of Washington lays off 66 technology workers
Victim in Chimacum house fire identified
Poker club folds after 46 years
Mistake sends raw sewage into WA's Ravenna Creek
Those who study autism wonder if Wil'sremarkable gift is a means of compensation for other deficits or a matter of serendipity.
In the past, Wil would have been called a "savant," a term now considered insensitive. Dager calls him extraordinarily talented.
Last week, Wil was honored at a reception in the Harborview cafeteria, where his art is on display through the month. He fidgeted at a table in the corner with a pile of colored paper in front of him, as dozens of people milled through the exhibit, challenging Wil's need for a calm environment.
Guest of honor or not, he finally had enough and shouted. He left for a quiet place as guests continued to admire his work.
The hospital has an art program and features artists year-round. When art director Peggy Weise saw Wil's work, she was intrigued.
"It's full of symbolism. Once you spend time with it, it's actually quite sophisticated. You can appreciate it first on the cursory level, and then you can appreciate its more sophisticated qualities," Weise said.
Wil, who was diagnosed with autism when he was 2, went to special classes in the Issaquah School District until two years ago but failed to thrive and began having panic attacks, said his grandmother, Susan Mooring. He was allowed to be tutored privately at Mooring's home just outside Renton.
With the help of his teacher, Leroy Maxwell, Wil, at 10, slowly began to learn to speak, something he seldom had done, and to read.
Then one day his father took him to a warehouse store and granted his wish for colorful construction paper, letting him buy an entire cartload. Wil's first collages circle-headed people with one eye each, a boy and girl holding hands, a blue baby with a shy smile, began to take shape. Mooring glanced at what he was doing and was stunned.
"There was really something going on there," she said of her grandson's art.
Although she had no formal art training, she believed Wil's creations were more than haphazard assemblages. To capture a design before Wil could destroy it, Mooring photographed each one and collected all the pieces. Later, she reassembled each collage on a large piece of artboard and hired a photographer to take digital photographs. Now hundreds of collages later, they're selling sometimes for as much as $1,000 each in the case of three sold at a charity auction to benefit autism.
One collage, of a pig with a downcast look and raised shoulder, gives a strong sense of isolation and sadness, Mooring said. While Wil names most of his work simply "Blue Baby" and "Pals," for instance Mooring named the pig collage "Exclusion." It was something Wil experienced, she said.
Another one of his creations is a collage of rectangles with a large figure, vaguely resembling Donald Trump, seemingly overlooking buildings. "He calls this one 'Rat,'" Mooring said.
That he can create facial expressions so well is particularly amazing, Dager said, because autistic people tend not to maintain eye contact or study facial expressions.
"Is it that their brains are wired differently? That's part of what we're studying," Dager said.
As for Wil, time for his art is a reward for doing schoolwork, Maxwell said. And when Wil begins to cut, the paper flies, the shapes emerge, the floor is littered with scraps of color and Maxwell and Mooring wait and watch for the magic.
What the autistic 12-year-old can't express verbally or in social interaction he can show through his carefully cut out geometric shapes assembled into characters in a paper collage, a talent the staff at Seattle's Harborview Medical Center calls a rare artistic gift. Large red circles become heads, delicate strips of fringed white paper become hair, and finely cut arches are shaped into eyebrows.
The art and the artist intrigues those who study autism. Dr. Stephen Dager, interim director of the University of Washington's Autism Center, who has been studying brain anatomy and chemistry in autism, is mystified by Wil's artistic talents. Autistic people generally pay little attention to eyes during social interaction, studies show, and usually are unaware of others' emotions. Yet, Wil has the ability to mimic human emotion through his art.
Wil doesn't understand numbers, has limited speech ability and very limited social skills. He has a brief attention span, tends to be compulsive and doesn't like his routine interrupted, and while he seems oblivious to others' subtle facial expressions, he manages not only to reproduce them but to do so by cutting them out of paper.
EXAMINER.COM RELATED ARTICLES
Teen girl dead in Lynnwood WA
University of Washington lays off 66 technology workers
Victim in Chimacum house fire identified
Poker club folds after 46 years
Mistake sends raw sewage into WA's Ravenna Creek
Those who study autism wonder if Wil'sremarkable gift is a means of compensation for other deficits or a matter of serendipity.
In the past, Wil would have been called a "savant," a term now considered insensitive. Dager calls him extraordinarily talented.
Last week, Wil was honored at a reception in the Harborview cafeteria, where his art is on display through the month. He fidgeted at a table in the corner with a pile of colored paper in front of him, as dozens of people milled through the exhibit, challenging Wil's need for a calm environment.
Guest of honor or not, he finally had enough and shouted. He left for a quiet place as guests continued to admire his work.
The hospital has an art program and features artists year-round. When art director Peggy Weise saw Wil's work, she was intrigued.
"It's full of symbolism. Once you spend time with it, it's actually quite sophisticated. You can appreciate it first on the cursory level, and then you can appreciate its more sophisticated qualities," Weise said.
Wil, who was diagnosed with autism when he was 2, went to special classes in the Issaquah School District until two years ago but failed to thrive and began having panic attacks, said his grandmother, Susan Mooring. He was allowed to be tutored privately at Mooring's home just outside Renton.
With the help of his teacher, Leroy Maxwell, Wil, at 10, slowly began to learn to speak, something he seldom had done, and to read.
Then one day his father took him to a warehouse store and granted his wish for colorful construction paper, letting him buy an entire cartload. Wil's first collages circle-headed people with one eye each, a boy and girl holding hands, a blue baby with a shy smile, began to take shape. Mooring glanced at what he was doing and was stunned.
"There was really something going on there," she said of her grandson's art.
Although she had no formal art training, she believed Wil's creations were more than haphazard assemblages. To capture a design before Wil could destroy it, Mooring photographed each one and collected all the pieces. Later, she reassembled each collage on a large piece of artboard and hired a photographer to take digital photographs. Now hundreds of collages later, they're selling sometimes for as much as $1,000 each in the case of three sold at a charity auction to benefit autism.
One collage, of a pig with a downcast look and raised shoulder, gives a strong sense of isolation and sadness, Mooring said. While Wil names most of his work simply "Blue Baby" and "Pals," for instance Mooring named the pig collage "Exclusion." It was something Wil experienced, she said.
Another one of his creations is a collage of rectangles with a large figure, vaguely resembling Donald Trump, seemingly overlooking buildings. "He calls this one 'Rat,'" Mooring said.
That he can create facial expressions so well is particularly amazing, Dager said, because autistic people tend not to maintain eye contact or study facial expressions.
"Is it that their brains are wired differently? That's part of what we're studying," Dager said.
As for Wil, time for his art is a reward for doing schoolwork, Maxwell said. And when Wil begins to cut, the paper flies, the shapes emerge, the floor is littered with scraps of color and Maxwell and Mooring wait and watch for the magic.
Sunday, May 25, 2008
A brother’s story
Cristof Traudes describes his brother Erik’s struggle with Asperger’s, an enigmatic disorder that has challenged their family and Erik’s resolve.
* Editors note: Italicized text in this article represents recreated conversations. Also, Cristof Traudes learned March 14, 2008, that this 2007 story placed second nationally in Personality Profile Writing in the 48th William Randolph Hearst Foundation's Journalism Awards Program. Traudes works for a newspaper in Duluth, Minn.
I celebrated my 21st birthday last fall at a Tex-Mex restaurant north of downtown Columbia. The walls were mounted with “genuine” sombreros and large TVs tuned to ESPN. I was happy with the combination of friends who gathered — there were friends I played with in Marching Mizzou, friends from the journalism school, friends from high school.
And there was my brother, Erik, 24. He sat to my left, wearing the bright red Minnesota Twins T-shirt I had scored for him during my summer work there. It was pretty special — not every kid gets to have his big brother at his milestone birthday.
I spent a lot of the night talking to the people in my corner — my brother Erik; friends Mark, Tom, Buddy and Aaron. I turned to Buddy, an MU music student who’s been one of my best friends since our days at West Junior High School.
How’s it going? I asked. Classes and everything OK?
Yeah, Buddy said. Just the usual music school thing. Lots of practicing, lots of rehearsals. You?
It’s going well, I said. I —
Erik interrupted me midsentence.
Did you see that Georgia Tech is beating Virginia?!
Really? I said to him. Interesting. …
Neither team meant much to me.
I turned back to Buddy. I —
Whoa! Erik blurted out. Did you see the Twins’ score?
I glanced up at the TV. The Twins had lost another game that could’ve ensured them postseason play. Oh well.
I turned back to Buddy. I —
Did you — Erik again, jumping in from my left. I tried to ignore him.
— am doing well. The J-School —
Did you —
— is keeping me —
Whoa! Did you —
I never finished my conversation with Buddy. But that’s a given when Erik’s around.
It’s always been that way.
But it’s barely been a year since I understood why.
My brother has Asperger’s syndrome.
Two brothers
Erik and I both stand 5 feet 10 inches tall. We’re both relatively skinny, although he’s starting to develop a little gut. We’ve both worked at Schnucks grocery store as baggers and cashiers for more than four years, often on the same shift. And despite our three-year difference in age, we’re both seniors at MU, scheduled to graduate in May.
The similarities end there.
Erik excels at math. I get lost once the “pre” is dropped from “precalculus.”
Erik loves science fiction. I could do without the science.
Erik mellows out to the soothing sounds of Sarah McLachlan. Give me Dave Matthews Band.
And while I’m mostly indifferent about baseball and video games, Erik can — and will — talk your ear off about either.
He can rattle off the winningest manager of the St. Louis Cardinals (Red Schoendienst, followed closely by Tony LaRussa) and how many years it took to create the latest installment of the fighting game “Soul Calibur” (two).
He can tell you the year St. Louis was introduced to Major League Baseball (1882, with the creation of the St. Louis Brown Stockings) and the name, properly spelled, of the creator of the Super Mario Bros. franchise (Shigeru Miyamoto).
When my friends meet Erik, his rapid-fire knowledge first impresses, then baffles and, finally, annoys. But after trying to signal with yawns, frowns and turned heads that they’re ready to stop listening, he just keeps talking.
That’s usually the point when they come to me and ask why my brother is so weird. For years, I secretly asked myself the same question.
Now I can tell them he has Asperger’s syndrome, a “mild” neurological disorder in the same spectrum as autism. That puts Erik in fast-growing company; as many as one in 150 children in America suffer from some form of autism, according to a study released in February by the Centers for Disease Control.
What I don’t often tell friends is that Erik’s obsessions are just one characteristic of his condition. They don’t know how much he struggled in school despite his superior intelligence. They don’t know about the long nights of crying, or that his mysterious and stubborn behavior strained my family to a breaking point. They don’t know that we lived with this mystery for 23 years, not knowing what caused it and when — or if — it would end.
The world of psychology is almost as much in the dark about these aspects of Asperger’s. It acknowledged the disorder’s existence little more than a decade ago; research remains in the discovery phase.
Some things about Asperger’s are generally known. For example, its symptoms vary greatly from person to person. Some might have obsessive routines, or sensitivity to bright lights and loud sounds. Others have major motor-skill problems or are considered “little professors” because of a precocious formal speaking style.
Asperger’s is five times as likely to appear in males as it is in females. Like all forms of autism, it is being diagnosed at an increasing rate in both children and adults. It stands out because it’s a “high-functioning” disorder, usually not accompanied by problems with language development or similar learning skills.
The most universal aspect of Asperger’s, however, isn’t a scientific fact. Rather, it’s what makes its label as a “mild” disorder sadly ironic. It’s the social side: Most of those with Asperger’s have normal intelligence and verbal skills, but their fixation on select topics makes it hard for them to take part in the give-and-take of regular conversation.
As children, people with Asperger’s tend to get bullied. As adults, they often get labeled as weird and have trouble in the job market while they struggle at maintaining relationships.
Preschool
Two-year-old Erik had short, fine blond hair, brown eyes and soft, pale skin. His face was a miniature carbon of Dad’s. He laughed with his mouth wide open, exposing a tiny pair of buck teeth. People often told my parents how pretty he was.
In Mrs. Jacks’ and Mrs. Nichols’ preschool classroom in Charlotte, N.C., he usually sat alone in a corner, absorbed in puzzles or Legos. Parents of more unruly toddlers were in awe of Erik’s calmness and his ability to keep himself entertained.
Go play with Erik, they’d tell their kids.
But the same thing happened every time.
There’d be a few moments of mutual stares, then Erik would turn back to his toy.
Hi, some child would say, eager to play.
Hi, Erik would say back.
What are you doing?
A puzzle.
Oh.
And that was where it ended.
Erik might answer some direct question. But he wouldn’t ask anything in return. He wouldn’t move over to share his toys. So the other kids would walk away and join others to play house or to color together — anything that involved interaction.
Erik was never mean. He never acted unhappy. He was just different.
At that time — 1984 — Asperger’s was not yet a part of American psychologists’ lingo. Often, those who exhibited the symptoms were either diagnosed as having a high-functioning form of autism or some vague learning disorder.
But my parents weren’t too concerned about Erik’s social isolation yet; they thought he would grow out of it.
The beginning
Our parents, Herman and Beth Traudes, had been married three years when their first son was born. They had been introduced by a mutual friend in Lexington, Ky., when Herman was stationed there for IBM and Beth was working for the county health department. Now they were living in a skinny traditional Dutch home along a canal in the heart of Herman’s native Amsterdam.
Beth was a self-proclaimed rebel and feminist who came of age in Columbia in the 1960s. When she was younger, children weren’t part of the plan. But once she was pregnant, she insisted on giving birth at home. When she went into labor on the eve of Aug. 29, 1982, the maroon sleeper-sofa in the living room was folded open and made ready. A flurry of phone calls brought two midwives and one of Herman’s sisters to the quiet house at Westlandgracht 185.
Most of the birth went off without a hitch. Except for the contractions. They were worse than expected and focused in the small of Beth’s back.
Herman got her through the pain, massaging her back until his hand was raw.
“The biggest problem of the night was that the neighbor woman had made chicken for Herman that was full of garlic,” my mother told me recently. “Dad and I were doing breathing exercises together; he was just giving me clouds of garlic.”
In the wee hours of the next morning, she gave birth to a pretty 6-pound baby boy with a dark mop of hair.
“It was extremely cool,” Mom said. “It ranks right up there as one of the happiest moments of my life.”
Primary school
Erik started primary school with everyone else. Over the years he went to birthday parties, movies and other social gatherings. He played after-school sports. But he didn’t fit in anywhere.
He knew it then, and he remembers it now.
“I don’t feel disabled,” he said. “I don’t feel like I’m weird. I just know that from everyone’s reactions.”
The “reactions” started early in primary school.
Erik was happy in his own bubble, a fantasy world where he was the star of his own TV station. He controlled the programming and, come recess, he’d rush outside and act out whatever show was on. Sometimes he was Batman. Other times, he was the 10th Teenage Mutant Ninja Turtle. (In his mind, he’d already created turtles five through nine.)
Mom remembers being called to school from time to time to observe his actions. She’d see him with his arms stretched out wide, a big grin lining his face while he ran along the playground’s perimeter. What she didn’t see was him playing with other children — because it rarely happened.
When it did, it wasn’t pretty.
One time, Erik was running along the fence when some classmates called him over. One of the boys held a piece of toast out to Erik. The others smirked.
Erik was excited by the attention. Had he been more tuned in he might have noticed that something was off. He bit into the toast.
The other boys howled.
Earlier, they all had spit on the toast and plotted to make a fool of Erik. And now the freak was eating their spit.
Bullying is a side-product that many Asperger’s children face; because they misread social cues, they are easy prey.
“Social things are so complex,” said Julie Donnelly, who heads Columbia-based Autism Support Services and has an adult son with Asperger’s. “We take (understanding them) for granted.”
If being an outcast at school wasn’t enough, Erik was also the worst player on his extracurricular soccer team — or certainly the most confused.
“He didn’t do anything,” my dad said, remembering the embarrassing Saturday mornings he spent on the sidelines. “He just stood on the field and watched the ball. He’d say, ‘Guys, there it goes.’ He just didn’t get it.”
His teammates would make their annoyance clear, and Erik would go home humiliated.
It was then that he probably started developing the depression he was diagnosed with in high school and still battles today. He was 8.
Because Asperger’s doesn’t affect intelligence, those with the disorder often understand the severity of the teasing they receive. Their mental block, however, prevents them from changing.
“The toll of meanness is tremendous,” said Nancy Minshew, director of the Autism Research Project at the University of Pittsburgh. “You know the saying, ‘sticks and stones may break my bones, but words can’t hurt me’?
“Not true.”
Home life
When Erik was 9 and I was 6, we lived in Castricum, the Netherlands, the town Erik and I still refer to as the place we grew up. It was a quaint Dutch coastal village, with traditional brick streets and open markets plus butchers and bakers included. Our house was red brick topped by an orange tile roof and looked like something out of an idyllic Dutch tourism book.
I doubt we knew it then, but our family was on the verge of falling apart.
Mom stayed home then, taking care of us and the house. Dad worked 10-hour days at IBM, feeling stuck in a managerial job he never really wanted. Every morning before Erik and I headed off to primary school, Mom would make our breakfast and Dad’s lunch.
While Mom got our cereal or toast with chocolate sprinkles ready, I’d get dressed in my second-floor room. A floor above, in Erik’s room, the drama would start.
Erik, get dressed! I’d hear my mother yell up the stairs. Erik, take 20 less minutes on your shower!
Erik, brush your teeth! And — again — Erik, get dressed!
Despite her pleas, most mornings found Erik curled up in his room, reading a video game magazine or staring off into space.
I hated the yelling, so I’d hear one order and follow it. (That stuck with me for life — I’ve often been called mature for my age, probably from watching my parents give the same orders over and over. Or maybe from not wanting to add to the chaos.)
“It was a really, really tough time,” Mom told me recently.
One exhausting morning after another, after we were finally out the door, she would sink into a living room couch, turn on the TV and try to forget what was going on around her. She’d try to forget her husband’s disaffection with a job he hated. She’d try to forget that she was thousands of miles from her parents. And she’d try to forget that she had a son who didn’t seem to be learning any of the practical aspects of life.
She said she considered leaving Dad and going back home to Missouri; she loved her husband but thought her son might be better off in the United States and would benefit from a bigger family support system. But Herman would never let her leave the Netherlands with the kids, she thought. She, too, was stuck.
That was the year my parents sent Erik to his first psychologist. They didn’t learn then that he had Asperger’s; the disorder hadn’t been identified yet. But they did learn that he needed special attention, and that it wasn’t their parenting that was at fault. They received tips, such as breaking down activities into smaller steps, on how to help him learn. “What we learned was we could not expect Erik to do what other children were doing at his age,” Mom said. “We had to meet him where he was and where his needs were. When we started doing that, when we stopped putting demands on him, the whole atmosphere in the house improved tremendously.”
It saved the marriage.
They were lucky.
Donnelly, of Columbia’s Autism Support Services, said that although more is known every day about Asperger’s, parents are often still left without much help.
“They’re forced to learn a lot themselves,” Donnelly said. “There’s a lot of need for information.”
Like twins
For all the trauma, I remember the early years as good years for Erik and me. We were more like twins than brothers.
He was 11 and I was 8 when we invented the future of video games: the Super Game Boy. Well, it was really Erik’s idea. He was the one who was always studying Nintendo.
The Super Game Boy would be a total upgrade — way cooler than the 8-bit monographic system that ruled handheld gaming at the time: Four more action buttons, a full-color screen and high-energy games.
During a creative burst one rainy afternoon, Erik and I bolted into my room and dug into my supply of paper and colored pencils. I carefully sketched the Super Game Boy. “This is it,” I said, showing off my drawing. “Cool,” Erik said, taking a break from his part of the production: the games.
He concocted the SGB version of “Street Fighter 2” and an SGB “Super Mario Bros.” They were just drawings of game cartridges, but to us, they came alive. We put the paper games into our paper
continued from page 11A
Super Game Boy, and voila! We played for hours.
It would take at least another four years before we started to pull apart. But it wasn’t because Erik had become a teenager with better things to do than hang with his baby brother. It was because I had outgrown him.
I wasn’t proud of that fact then. I’m still not.
High school
An IQ test administered by the MU Assessment and Consultation Clinic in 2006 placed Erik in the 99th percentile compared to others in his age group. Still, school was never easy for him.
We had moved to Columbia a
year earlier, in 1998, to be closer to Mom’s family. Erik and I had to leave our Dutch roots behind and adopt American culture. But I was mostly excited. I could refresh my image, make it whatever I wanted it to be. It would be a time for reinvention.
For Erik, there was no reinvention. Just recurrence.
On the surface, Hickman High School was refreshing for him. As one of 2,000-plus students, he found it easier to blend into the background there, which enabled him to stop being a target for bullies. He also found people who shared his passion for the fantasy card game “Magic: The Gathering.” Playing cards masked his social awkwardness.
But the high of having friends at school was a stark contrast to the despair he felt at home. As with my parents’ shouts up the stairs back in Castricum, I was a silent witness to that despair.
Erik and I had adjacent rooms in our traditional 1930s red-brick home in Columbia’s Old Southwest neighborhood. But more and more, we were less and less alike.
My room was tiny. My neatly made twin-size bed covered more than a third of the floor. Organizing became a strategic challenge. Dad bolted shelves to the green walls. A hutch added space to my skinny desk; trinkets, photos and issues of Rolling Stone were arranged inside with care. There was minimal decoration. My one poster — a massive 5-by-7-footer of the Beastie Boys — demanded total attention.
Erik’s walls were green, too. But his were plastered with posters: Yoshi, Mario, Luigi — all centerfold regulars in Nintendo Power magazine. His room was much larger, but that didn’t mean it was easier to maneuver. His double bed was rarely made. His three bookcases were stuffed with “Star Trek” fan fiction, “Hardy Boys” novels and classic American literature. His large computer desk was littered with dirty dishes and silverware. He would have had space to spare had it not been for a 2-inch thick sea of school papers and handouts that blanketed the floor.
Lying in my tiny, neat room — separated from my brother by one wall — I listened to Erik’s reality and realized I was becoming the older brother.
The tears usually started around 11 p.m. or midnight. Mom would come from down the hallway, the hardwood floor creaking under her feet.
What’s wrong? she’d ask.
I just — I just — can’t, you know, I’d hear Erik mumble. Sniffles would interrupt and garble his words. His unfinished homework would lie on his cluttered desk like an accusation. I can’t.
Sure you can, my mom would urge.
I just — I just — I ....
He explained it to me recently, the difficulty he has with schoolwork. His mind wants to start wandering as soon as he sits down. Once he finally gets focused, it takes only the smallest snag, whether it’s a question that’s too hard or a little worry that his essay won’t be the best in the class, to set his mind off again. He’d hit snag after snag until, around midnight, he’d realize he wouldn’t be able to finish the assignment. And that bothered him, because he’d always considered himself a prime student.
“I never have been able to effectively sit down and just do homework,” he said. “… I can write well. I’m a good writer. I just can’t sit down and do it.”
Many with Asperger’s have a similar experience.
“They want people to think they are really intelligent,” said Pittsburgh University’s Minshew. “They don’t want to be seen as failures.”
The problem can be compounded in the classroom. While most teachers know how to deal with students who don’t want to do homework, they aren’t always as prepared to deal with those who want to but can’t because of a mental block.
Donnelly, who works part time as a consultant for Columbia Public Schools, said some teachers take it personally when students who test high for intelligence seem to blow off their homework.
“Teachers (of students with Asperger’s) are always saying, ‘He’s rude and disrespectful,’” Donnelly said. “They need more understanding.”
For me, Erik’s educational lapses created a dark understanding: I would eclipse my older brother — the older brother whose fantasy world I once thrived in, the older brother I grew up wanting to be like.
Hearing him cry through the wall was also the first time I felt complete empathy for him.
The second time was when he flunked out of MU.
College
Erik walked across the stage of the Hearnes Center on June 3, 2000, wearing the bright purple gown and mortarboard of Hickman High. He flashed the wide-open grin of his childhood.
“I was really happy,” he told me. “I knew I was going to be going to college. It was going to kick ass and I was going to be out in four years.”
Statistics were against him. Deborah Wright, clinic director at the MU Assessment and Consultation Clinic, said many students with Asperger’s syndrome take eight to nine years to finish college. Others drop out entirely.
Erik started at MU as a computer science major intending to program his own video games one day. He moved into a dormitory. He and his roommate had little in common and barely talked.
It was one of the happiest times of his life.
He could play video games without getting so absorbed in them that his schoolwork faltered. His depression was receding, despite having little social interaction. At fall’s end, his grade-point average was 3.579 out of a possible 4.
Spring semester was different.
Erik was still happy. He was making a slew of new friends. All of them were deeply interested in video games and seemed to spend all of their time playing them — just as Erik wanted to do. He even started dating.
It was a social high point for the former boy in the corner.
But Erik’s mind was where it had always been. While he thought his friends played video games 24/7, they were able to set them aside for the two to three hours they needed to do homework. When time came for Erik to do the same, the added social distractions made him forget his priorities.
His grade point plunged to 1.136. Seven months later, it was 0.900.
MU booted him.
He moved back home. He worked part time at the grocery store. He lost his pride, his joy and his hope. He took a deep plunge back into depression. The former nights spent in anguish about high school homework were nothing compared to these months worrying about his future.
“They say you can accomplish whatever you set your mind to,” Erik said to me recently, eyebrows tightened together. “Setting my mind to it isn’t enough. You also have to set effort to it. But when I hit a snag, that was it.”
Dad
Predominant evidence shows Asperger’s is a hereditary disorder. My father has always quietly felt responsible for Erik’s differences.
* Editors note: Italicized text in this article represents recreated conversations. Also, Cristof Traudes learned March 14, 2008, that this 2007 story placed second nationally in Personality Profile Writing in the 48th William Randolph Hearst Foundation's Journalism Awards Program. Traudes works for a newspaper in Duluth, Minn.
I celebrated my 21st birthday last fall at a Tex-Mex restaurant north of downtown Columbia. The walls were mounted with “genuine” sombreros and large TVs tuned to ESPN. I was happy with the combination of friends who gathered — there were friends I played with in Marching Mizzou, friends from the journalism school, friends from high school.
And there was my brother, Erik, 24. He sat to my left, wearing the bright red Minnesota Twins T-shirt I had scored for him during my summer work there. It was pretty special — not every kid gets to have his big brother at his milestone birthday.
I spent a lot of the night talking to the people in my corner — my brother Erik; friends Mark, Tom, Buddy and Aaron. I turned to Buddy, an MU music student who’s been one of my best friends since our days at West Junior High School.
How’s it going? I asked. Classes and everything OK?
Yeah, Buddy said. Just the usual music school thing. Lots of practicing, lots of rehearsals. You?
It’s going well, I said. I —
Erik interrupted me midsentence.
Did you see that Georgia Tech is beating Virginia?!
Really? I said to him. Interesting. …
Neither team meant much to me.
I turned back to Buddy. I —
Whoa! Erik blurted out. Did you see the Twins’ score?
I glanced up at the TV. The Twins had lost another game that could’ve ensured them postseason play. Oh well.
I turned back to Buddy. I —
Did you — Erik again, jumping in from my left. I tried to ignore him.
— am doing well. The J-School —
Did you —
— is keeping me —
Whoa! Did you —
I never finished my conversation with Buddy. But that’s a given when Erik’s around.
It’s always been that way.
But it’s barely been a year since I understood why.
My brother has Asperger’s syndrome.
Two brothers
Erik and I both stand 5 feet 10 inches tall. We’re both relatively skinny, although he’s starting to develop a little gut. We’ve both worked at Schnucks grocery store as baggers and cashiers for more than four years, often on the same shift. And despite our three-year difference in age, we’re both seniors at MU, scheduled to graduate in May.
The similarities end there.
Erik excels at math. I get lost once the “pre” is dropped from “precalculus.”
Erik loves science fiction. I could do without the science.
Erik mellows out to the soothing sounds of Sarah McLachlan. Give me Dave Matthews Band.
And while I’m mostly indifferent about baseball and video games, Erik can — and will — talk your ear off about either.
He can rattle off the winningest manager of the St. Louis Cardinals (Red Schoendienst, followed closely by Tony LaRussa) and how many years it took to create the latest installment of the fighting game “Soul Calibur” (two).
He can tell you the year St. Louis was introduced to Major League Baseball (1882, with the creation of the St. Louis Brown Stockings) and the name, properly spelled, of the creator of the Super Mario Bros. franchise (Shigeru Miyamoto).
When my friends meet Erik, his rapid-fire knowledge first impresses, then baffles and, finally, annoys. But after trying to signal with yawns, frowns and turned heads that they’re ready to stop listening, he just keeps talking.
That’s usually the point when they come to me and ask why my brother is so weird. For years, I secretly asked myself the same question.
Now I can tell them he has Asperger’s syndrome, a “mild” neurological disorder in the same spectrum as autism. That puts Erik in fast-growing company; as many as one in 150 children in America suffer from some form of autism, according to a study released in February by the Centers for Disease Control.
What I don’t often tell friends is that Erik’s obsessions are just one characteristic of his condition. They don’t know how much he struggled in school despite his superior intelligence. They don’t know about the long nights of crying, or that his mysterious and stubborn behavior strained my family to a breaking point. They don’t know that we lived with this mystery for 23 years, not knowing what caused it and when — or if — it would end.
The world of psychology is almost as much in the dark about these aspects of Asperger’s. It acknowledged the disorder’s existence little more than a decade ago; research remains in the discovery phase.
Some things about Asperger’s are generally known. For example, its symptoms vary greatly from person to person. Some might have obsessive routines, or sensitivity to bright lights and loud sounds. Others have major motor-skill problems or are considered “little professors” because of a precocious formal speaking style.
Asperger’s is five times as likely to appear in males as it is in females. Like all forms of autism, it is being diagnosed at an increasing rate in both children and adults. It stands out because it’s a “high-functioning” disorder, usually not accompanied by problems with language development or similar learning skills.
The most universal aspect of Asperger’s, however, isn’t a scientific fact. Rather, it’s what makes its label as a “mild” disorder sadly ironic. It’s the social side: Most of those with Asperger’s have normal intelligence and verbal skills, but their fixation on select topics makes it hard for them to take part in the give-and-take of regular conversation.
As children, people with Asperger’s tend to get bullied. As adults, they often get labeled as weird and have trouble in the job market while they struggle at maintaining relationships.
Preschool
Two-year-old Erik had short, fine blond hair, brown eyes and soft, pale skin. His face was a miniature carbon of Dad’s. He laughed with his mouth wide open, exposing a tiny pair of buck teeth. People often told my parents how pretty he was.
In Mrs. Jacks’ and Mrs. Nichols’ preschool classroom in Charlotte, N.C., he usually sat alone in a corner, absorbed in puzzles or Legos. Parents of more unruly toddlers were in awe of Erik’s calmness and his ability to keep himself entertained.
Go play with Erik, they’d tell their kids.
But the same thing happened every time.
There’d be a few moments of mutual stares, then Erik would turn back to his toy.
Hi, some child would say, eager to play.
Hi, Erik would say back.
What are you doing?
A puzzle.
Oh.
And that was where it ended.
Erik might answer some direct question. But he wouldn’t ask anything in return. He wouldn’t move over to share his toys. So the other kids would walk away and join others to play house or to color together — anything that involved interaction.
Erik was never mean. He never acted unhappy. He was just different.
At that time — 1984 — Asperger’s was not yet a part of American psychologists’ lingo. Often, those who exhibited the symptoms were either diagnosed as having a high-functioning form of autism or some vague learning disorder.
But my parents weren’t too concerned about Erik’s social isolation yet; they thought he would grow out of it.
The beginning
Our parents, Herman and Beth Traudes, had been married three years when their first son was born. They had been introduced by a mutual friend in Lexington, Ky., when Herman was stationed there for IBM and Beth was working for the county health department. Now they were living in a skinny traditional Dutch home along a canal in the heart of Herman’s native Amsterdam.
Beth was a self-proclaimed rebel and feminist who came of age in Columbia in the 1960s. When she was younger, children weren’t part of the plan. But once she was pregnant, she insisted on giving birth at home. When she went into labor on the eve of Aug. 29, 1982, the maroon sleeper-sofa in the living room was folded open and made ready. A flurry of phone calls brought two midwives and one of Herman’s sisters to the quiet house at Westlandgracht 185.
Most of the birth went off without a hitch. Except for the contractions. They were worse than expected and focused in the small of Beth’s back.
Herman got her through the pain, massaging her back until his hand was raw.
“The biggest problem of the night was that the neighbor woman had made chicken for Herman that was full of garlic,” my mother told me recently. “Dad and I were doing breathing exercises together; he was just giving me clouds of garlic.”
In the wee hours of the next morning, she gave birth to a pretty 6-pound baby boy with a dark mop of hair.
“It was extremely cool,” Mom said. “It ranks right up there as one of the happiest moments of my life.”
Primary school
Erik started primary school with everyone else. Over the years he went to birthday parties, movies and other social gatherings. He played after-school sports. But he didn’t fit in anywhere.
He knew it then, and he remembers it now.
“I don’t feel disabled,” he said. “I don’t feel like I’m weird. I just know that from everyone’s reactions.”
The “reactions” started early in primary school.
Erik was happy in his own bubble, a fantasy world where he was the star of his own TV station. He controlled the programming and, come recess, he’d rush outside and act out whatever show was on. Sometimes he was Batman. Other times, he was the 10th Teenage Mutant Ninja Turtle. (In his mind, he’d already created turtles five through nine.)
Mom remembers being called to school from time to time to observe his actions. She’d see him with his arms stretched out wide, a big grin lining his face while he ran along the playground’s perimeter. What she didn’t see was him playing with other children — because it rarely happened.
When it did, it wasn’t pretty.
One time, Erik was running along the fence when some classmates called him over. One of the boys held a piece of toast out to Erik. The others smirked.
Erik was excited by the attention. Had he been more tuned in he might have noticed that something was off. He bit into the toast.
The other boys howled.
Earlier, they all had spit on the toast and plotted to make a fool of Erik. And now the freak was eating their spit.
Bullying is a side-product that many Asperger’s children face; because they misread social cues, they are easy prey.
“Social things are so complex,” said Julie Donnelly, who heads Columbia-based Autism Support Services and has an adult son with Asperger’s. “We take (understanding them) for granted.”
If being an outcast at school wasn’t enough, Erik was also the worst player on his extracurricular soccer team — or certainly the most confused.
“He didn’t do anything,” my dad said, remembering the embarrassing Saturday mornings he spent on the sidelines. “He just stood on the field and watched the ball. He’d say, ‘Guys, there it goes.’ He just didn’t get it.”
His teammates would make their annoyance clear, and Erik would go home humiliated.
It was then that he probably started developing the depression he was diagnosed with in high school and still battles today. He was 8.
Because Asperger’s doesn’t affect intelligence, those with the disorder often understand the severity of the teasing they receive. Their mental block, however, prevents them from changing.
“The toll of meanness is tremendous,” said Nancy Minshew, director of the Autism Research Project at the University of Pittsburgh. “You know the saying, ‘sticks and stones may break my bones, but words can’t hurt me’?
“Not true.”
Home life
When Erik was 9 and I was 6, we lived in Castricum, the Netherlands, the town Erik and I still refer to as the place we grew up. It was a quaint Dutch coastal village, with traditional brick streets and open markets plus butchers and bakers included. Our house was red brick topped by an orange tile roof and looked like something out of an idyllic Dutch tourism book.
I doubt we knew it then, but our family was on the verge of falling apart.
Mom stayed home then, taking care of us and the house. Dad worked 10-hour days at IBM, feeling stuck in a managerial job he never really wanted. Every morning before Erik and I headed off to primary school, Mom would make our breakfast and Dad’s lunch.
While Mom got our cereal or toast with chocolate sprinkles ready, I’d get dressed in my second-floor room. A floor above, in Erik’s room, the drama would start.
Erik, get dressed! I’d hear my mother yell up the stairs. Erik, take 20 less minutes on your shower!
Erik, brush your teeth! And — again — Erik, get dressed!
Despite her pleas, most mornings found Erik curled up in his room, reading a video game magazine or staring off into space.
I hated the yelling, so I’d hear one order and follow it. (That stuck with me for life — I’ve often been called mature for my age, probably from watching my parents give the same orders over and over. Or maybe from not wanting to add to the chaos.)
“It was a really, really tough time,” Mom told me recently.
One exhausting morning after another, after we were finally out the door, she would sink into a living room couch, turn on the TV and try to forget what was going on around her. She’d try to forget her husband’s disaffection with a job he hated. She’d try to forget that she was thousands of miles from her parents. And she’d try to forget that she had a son who didn’t seem to be learning any of the practical aspects of life.
She said she considered leaving Dad and going back home to Missouri; she loved her husband but thought her son might be better off in the United States and would benefit from a bigger family support system. But Herman would never let her leave the Netherlands with the kids, she thought. She, too, was stuck.
That was the year my parents sent Erik to his first psychologist. They didn’t learn then that he had Asperger’s; the disorder hadn’t been identified yet. But they did learn that he needed special attention, and that it wasn’t their parenting that was at fault. They received tips, such as breaking down activities into smaller steps, on how to help him learn. “What we learned was we could not expect Erik to do what other children were doing at his age,” Mom said. “We had to meet him where he was and where his needs were. When we started doing that, when we stopped putting demands on him, the whole atmosphere in the house improved tremendously.”
It saved the marriage.
They were lucky.
Donnelly, of Columbia’s Autism Support Services, said that although more is known every day about Asperger’s, parents are often still left without much help.
“They’re forced to learn a lot themselves,” Donnelly said. “There’s a lot of need for information.”
Like twins
For all the trauma, I remember the early years as good years for Erik and me. We were more like twins than brothers.
He was 11 and I was 8 when we invented the future of video games: the Super Game Boy. Well, it was really Erik’s idea. He was the one who was always studying Nintendo.
The Super Game Boy would be a total upgrade — way cooler than the 8-bit monographic system that ruled handheld gaming at the time: Four more action buttons, a full-color screen and high-energy games.
During a creative burst one rainy afternoon, Erik and I bolted into my room and dug into my supply of paper and colored pencils. I carefully sketched the Super Game Boy. “This is it,” I said, showing off my drawing. “Cool,” Erik said, taking a break from his part of the production: the games.
He concocted the SGB version of “Street Fighter 2” and an SGB “Super Mario Bros.” They were just drawings of game cartridges, but to us, they came alive. We put the paper games into our paper
continued from page 11A
Super Game Boy, and voila! We played for hours.
It would take at least another four years before we started to pull apart. But it wasn’t because Erik had become a teenager with better things to do than hang with his baby brother. It was because I had outgrown him.
I wasn’t proud of that fact then. I’m still not.
High school
An IQ test administered by the MU Assessment and Consultation Clinic in 2006 placed Erik in the 99th percentile compared to others in his age group. Still, school was never easy for him.
We had moved to Columbia a
year earlier, in 1998, to be closer to Mom’s family. Erik and I had to leave our Dutch roots behind and adopt American culture. But I was mostly excited. I could refresh my image, make it whatever I wanted it to be. It would be a time for reinvention.
For Erik, there was no reinvention. Just recurrence.
On the surface, Hickman High School was refreshing for him. As one of 2,000-plus students, he found it easier to blend into the background there, which enabled him to stop being a target for bullies. He also found people who shared his passion for the fantasy card game “Magic: The Gathering.” Playing cards masked his social awkwardness.
But the high of having friends at school was a stark contrast to the despair he felt at home. As with my parents’ shouts up the stairs back in Castricum, I was a silent witness to that despair.
Erik and I had adjacent rooms in our traditional 1930s red-brick home in Columbia’s Old Southwest neighborhood. But more and more, we were less and less alike.
My room was tiny. My neatly made twin-size bed covered more than a third of the floor. Organizing became a strategic challenge. Dad bolted shelves to the green walls. A hutch added space to my skinny desk; trinkets, photos and issues of Rolling Stone were arranged inside with care. There was minimal decoration. My one poster — a massive 5-by-7-footer of the Beastie Boys — demanded total attention.
Erik’s walls were green, too. But his were plastered with posters: Yoshi, Mario, Luigi — all centerfold regulars in Nintendo Power magazine. His room was much larger, but that didn’t mean it was easier to maneuver. His double bed was rarely made. His three bookcases were stuffed with “Star Trek” fan fiction, “Hardy Boys” novels and classic American literature. His large computer desk was littered with dirty dishes and silverware. He would have had space to spare had it not been for a 2-inch thick sea of school papers and handouts that blanketed the floor.
Lying in my tiny, neat room — separated from my brother by one wall — I listened to Erik’s reality and realized I was becoming the older brother.
The tears usually started around 11 p.m. or midnight. Mom would come from down the hallway, the hardwood floor creaking under her feet.
What’s wrong? she’d ask.
I just — I just — can’t, you know, I’d hear Erik mumble. Sniffles would interrupt and garble his words. His unfinished homework would lie on his cluttered desk like an accusation. I can’t.
Sure you can, my mom would urge.
I just — I just — I ....
He explained it to me recently, the difficulty he has with schoolwork. His mind wants to start wandering as soon as he sits down. Once he finally gets focused, it takes only the smallest snag, whether it’s a question that’s too hard or a little worry that his essay won’t be the best in the class, to set his mind off again. He’d hit snag after snag until, around midnight, he’d realize he wouldn’t be able to finish the assignment. And that bothered him, because he’d always considered himself a prime student.
“I never have been able to effectively sit down and just do homework,” he said. “… I can write well. I’m a good writer. I just can’t sit down and do it.”
Many with Asperger’s have a similar experience.
“They want people to think they are really intelligent,” said Pittsburgh University’s Minshew. “They don’t want to be seen as failures.”
The problem can be compounded in the classroom. While most teachers know how to deal with students who don’t want to do homework, they aren’t always as prepared to deal with those who want to but can’t because of a mental block.
Donnelly, who works part time as a consultant for Columbia Public Schools, said some teachers take it personally when students who test high for intelligence seem to blow off their homework.
“Teachers (of students with Asperger’s) are always saying, ‘He’s rude and disrespectful,’” Donnelly said. “They need more understanding.”
For me, Erik’s educational lapses created a dark understanding: I would eclipse my older brother — the older brother whose fantasy world I once thrived in, the older brother I grew up wanting to be like.
Hearing him cry through the wall was also the first time I felt complete empathy for him.
The second time was when he flunked out of MU.
College
Erik walked across the stage of the Hearnes Center on June 3, 2000, wearing the bright purple gown and mortarboard of Hickman High. He flashed the wide-open grin of his childhood.
“I was really happy,” he told me. “I knew I was going to be going to college. It was going to kick ass and I was going to be out in four years.”
Statistics were against him. Deborah Wright, clinic director at the MU Assessment and Consultation Clinic, said many students with Asperger’s syndrome take eight to nine years to finish college. Others drop out entirely.
Erik started at MU as a computer science major intending to program his own video games one day. He moved into a dormitory. He and his roommate had little in common and barely talked.
It was one of the happiest times of his life.
He could play video games without getting so absorbed in them that his schoolwork faltered. His depression was receding, despite having little social interaction. At fall’s end, his grade-point average was 3.579 out of a possible 4.
Spring semester was different.
Erik was still happy. He was making a slew of new friends. All of them were deeply interested in video games and seemed to spend all of their time playing them — just as Erik wanted to do. He even started dating.
It was a social high point for the former boy in the corner.
But Erik’s mind was where it had always been. While he thought his friends played video games 24/7, they were able to set them aside for the two to three hours they needed to do homework. When time came for Erik to do the same, the added social distractions made him forget his priorities.
His grade point plunged to 1.136. Seven months later, it was 0.900.
MU booted him.
He moved back home. He worked part time at the grocery store. He lost his pride, his joy and his hope. He took a deep plunge back into depression. The former nights spent in anguish about high school homework were nothing compared to these months worrying about his future.
“They say you can accomplish whatever you set your mind to,” Erik said to me recently, eyebrows tightened together. “Setting my mind to it isn’t enough. You also have to set effort to it. But when I hit a snag, that was it.”
Dad
Predominant evidence shows Asperger’s is a hereditary disorder. My father has always quietly felt responsible for Erik’s differences.
Music critic describes life wth Asperger's syndrome
Pulitzer Prize-winning music critic Tim Page is being brought to MU by the schools of Journalism and Music, the Thompson Center, the Center for Arts and Humanities and MU Extension’s Community Development. A story on page 1A Friday of the Missourian left out three of the sponsoring groups.
COLUMBIA — Tim Page wouldn’t wish Asperger’s syndrome on anyone.
As a kid, he fixated with feverish intensity on details the rest of the world overlooked. He immersed himself in a handful of topics — music, silent films, large chunks of the 1961 Worldbook Encyclopedia — and vigorously absorbed everything he could about them.
In spite of his zest for learning, he struggled through school. Teachers sometimes called him a genius. Then, they’d assign him failing grades.
In his career, Page said he’s angered people with his tendency to offer unfiltered opinions, a product of his perpetual struggle to recognize and decipher social cues. In his personal sphere, forging friendships and relationships has been a lifelong labor. Page has lived much of his life shouldering burdens of confusion, isolation and unhappiness.
“It’s been kind of a lonely life and remains a lonely life,” Page said. “You get the sense that you don’t have the connections with people you’d like to have.”
An estimated four to five out of every 10,000 people have Asperger’s Syndrome, an autism spectrum disorder that hinders social interactions and entails intense fixation on topics that are often offbeat and “are not always productive”, said Janet Farmer, co-director of the Thompson Center for Autism & Neurodevelopmental Disorders at MU.
“You might have a child who gets very interested with sea animals, air conditioners, presidents,” Farmer said. “And they sometimes have negative interactions with other people. In other words, it can be very disabling.”
Page, however, has transformed disability into ability. It’s a real-life twist on making lemonade out of lemons: When life handed Page Asperger’s Syndrome, he forged an illustrious career out of music criticism.
“Would I wish Asperger’s on anybody? No,” said Page, who was diagnosed in 2000. “On the other hand, it seems to me that a lot of things I did and am doing in my life happened because I had Asperger’s.”
At 53, Page has a formidable resume that could incite envy among journalists and music afficianados many years his senior. He will visit MU on Monday and Tuesday, offering a series of lectures and discussions about his disorder, his career and the symbiosis between them. He worked for the Washington Post critiquing classical music starting in 1995. In 1997, he won a Pulitzer Prize in criticism for his work with the Post — work the Pulitzer board called “lucid and illuminating.” He used to be the chief music critic for Newsday, penned stories about music and culture for The New York Times and was the St. Louis Symphony Orchestra’s artistic adviser and creative chair from 1999 to 2001.
Now, Page is a visiting professor with the Annenberg School of Journalism at the University of Southern California.
In 2009, Page will be able to pencil in “autobiographer” on his resume, when he’ll release a memoir detailing his experience with Asperger’s Syndrome. In August 2007, Page wrote a similarly themed piece for The New Yorker called “Parallel Play: A Lifetime of Restless Isolation Explained.”
After reading the article, Sandra Hodge, an associate professor at MU, contacted Page via e-mail to see if he’d be interested in visiting campus, figuring “the worst thing he could say would be no.”
Spearheaded by Hodge, bringing Page to MU was a collaborative effort among the journalism and music schools, the Thompson Center, the Center for Arts and Humanities and University Extension, Community Development. Page’s main appearance will be a University of Missouri Distinguished Lecture Monday evening.
“He’s achieved all these wonderful things in his life,” Hodge said. “I think he’s an inspiration for parents whose children may have the same syndrome. He’s met a number of challenges and has been very successful."
Finding his niche didn’t necessarily take a lot of work. When it came to music, Page said he took to it “like a duck to water.”
“Music was not something I had to learn about from middle C,” Page said. “I knew about it intrinsically from the moment I heard it and needed to learn how to deal with that, how to put that together. There’s no doubt that it had something to do with (Asperger’s) because I was extraordinarily sensitive to music from the time I was two or three. After that, I just inhaled it.”
Paired with a knack for writing, Page’s passion paved a path to success. It’s this kind of success that Farmer said can offer real inspiration to people whose lives are affected by autism spectrum disorders.
“It’s an important message about how you shouldn’t make assumptions about an individual that are negative,” Farmer said. “They may be able to find a perfect match and be very successful in life.”
Professional success aside, Page is straightforward about the obstacles he’s faced on a more personal level, citing two marriages that ended in divorce.
“Would I give up my Pulitzer for a really, really ecstatic and happy marriage?” Page said. “Yeah, I probably would, but maybe I don’t have to choose one or the other.”
Though he’s frank about its challenges, Page said Asperger’s shouldn’t be looked at as “some sort of horrible emotional death sentence.” With three sons and many friends he cherishes, Page maintains a relatively positive outlook on life.
“I’ve had a lot of the blessings that life has,” Page said. “It’s just a little complicated. Everybody’s life has some rain in it.”
COLUMBIA — Tim Page wouldn’t wish Asperger’s syndrome on anyone.
As a kid, he fixated with feverish intensity on details the rest of the world overlooked. He immersed himself in a handful of topics — music, silent films, large chunks of the 1961 Worldbook Encyclopedia — and vigorously absorbed everything he could about them.
In spite of his zest for learning, he struggled through school. Teachers sometimes called him a genius. Then, they’d assign him failing grades.
In his career, Page said he’s angered people with his tendency to offer unfiltered opinions, a product of his perpetual struggle to recognize and decipher social cues. In his personal sphere, forging friendships and relationships has been a lifelong labor. Page has lived much of his life shouldering burdens of confusion, isolation and unhappiness.
“It’s been kind of a lonely life and remains a lonely life,” Page said. “You get the sense that you don’t have the connections with people you’d like to have.”
An estimated four to five out of every 10,000 people have Asperger’s Syndrome, an autism spectrum disorder that hinders social interactions and entails intense fixation on topics that are often offbeat and “are not always productive”, said Janet Farmer, co-director of the Thompson Center for Autism & Neurodevelopmental Disorders at MU.
“You might have a child who gets very interested with sea animals, air conditioners, presidents,” Farmer said. “And they sometimes have negative interactions with other people. In other words, it can be very disabling.”
Page, however, has transformed disability into ability. It’s a real-life twist on making lemonade out of lemons: When life handed Page Asperger’s Syndrome, he forged an illustrious career out of music criticism.
“Would I wish Asperger’s on anybody? No,” said Page, who was diagnosed in 2000. “On the other hand, it seems to me that a lot of things I did and am doing in my life happened because I had Asperger’s.”
At 53, Page has a formidable resume that could incite envy among journalists and music afficianados many years his senior. He will visit MU on Monday and Tuesday, offering a series of lectures and discussions about his disorder, his career and the symbiosis between them. He worked for the Washington Post critiquing classical music starting in 1995. In 1997, he won a Pulitzer Prize in criticism for his work with the Post — work the Pulitzer board called “lucid and illuminating.” He used to be the chief music critic for Newsday, penned stories about music and culture for The New York Times and was the St. Louis Symphony Orchestra’s artistic adviser and creative chair from 1999 to 2001.
Now, Page is a visiting professor with the Annenberg School of Journalism at the University of Southern California.
In 2009, Page will be able to pencil in “autobiographer” on his resume, when he’ll release a memoir detailing his experience with Asperger’s Syndrome. In August 2007, Page wrote a similarly themed piece for The New Yorker called “Parallel Play: A Lifetime of Restless Isolation Explained.”
After reading the article, Sandra Hodge, an associate professor at MU, contacted Page via e-mail to see if he’d be interested in visiting campus, figuring “the worst thing he could say would be no.”
Spearheaded by Hodge, bringing Page to MU was a collaborative effort among the journalism and music schools, the Thompson Center, the Center for Arts and Humanities and University Extension, Community Development. Page’s main appearance will be a University of Missouri Distinguished Lecture Monday evening.
“He’s achieved all these wonderful things in his life,” Hodge said. “I think he’s an inspiration for parents whose children may have the same syndrome. He’s met a number of challenges and has been very successful."
Finding his niche didn’t necessarily take a lot of work. When it came to music, Page said he took to it “like a duck to water.”
“Music was not something I had to learn about from middle C,” Page said. “I knew about it intrinsically from the moment I heard it and needed to learn how to deal with that, how to put that together. There’s no doubt that it had something to do with (Asperger’s) because I was extraordinarily sensitive to music from the time I was two or three. After that, I just inhaled it.”
Paired with a knack for writing, Page’s passion paved a path to success. It’s this kind of success that Farmer said can offer real inspiration to people whose lives are affected by autism spectrum disorders.
“It’s an important message about how you shouldn’t make assumptions about an individual that are negative,” Farmer said. “They may be able to find a perfect match and be very successful in life.”
Professional success aside, Page is straightforward about the obstacles he’s faced on a more personal level, citing two marriages that ended in divorce.
“Would I give up my Pulitzer for a really, really ecstatic and happy marriage?” Page said. “Yeah, I probably would, but maybe I don’t have to choose one or the other.”
Though he’s frank about its challenges, Page said Asperger’s shouldn’t be looked at as “some sort of horrible emotional death sentence.” With three sons and many friends he cherishes, Page maintains a relatively positive outlook on life.
“I’ve had a lot of the blessings that life has,” Page said. “It’s just a little complicated. Everybody’s life has some rain in it.”
“I can’t change my Asperger’s Syndrome so I may as well get on with what I can do”
Neil Shepherd – Software Developer
Introduction
Software Developer, Neil Shepherd was shocked to discover he had Asperger’s Syndrome. Up until the age of about 31, he had lived with the condition without even knowing he had it. Asperger’s Syndrome is a form of autism and is often referred to as a hidden disability because it is not easily recognised. It’s also described as a 'spectrum disorder' because it affects people in different ways. According to the National Autistic Society, people with Asperger’s Syndrome have difficulties with social communication, social interaction and social imagination.
However, Neil’s disability has not been a barrier to his career. He is a computer science graduate and has been able to find employment that allows him to make the best use of his qualifications and his talents. “I need to keep busy all the time and I find my work challenging, in a positive way” says Neil who works for Esteem, an IT company.
Employer's story
Although the nature of the professional work at Esteem is highly technical, Human Resources Manager, Joanne Smart, always looks for more than technical skills and qualifications when recruiting new staff. She tries to employ people who will fit in with the company and its culture. “It’s not something you can determine from a CV or application” says Joanne, “you can only really assess whether someone will fit into the company when you meet them at interview.”
Best person for the job
Esteem’s two stage interview process gives Joanne and other managers the opportunity to learn more about a candidate’s personality, attitude and motivation. In Neil’s case, Joanne says that his ‘personability’ was a key strength of his interview and this, along with his qualifications and experience made him the best candidate out of the ten people who were interviewed for the job.
Neil was the first employee with Asperger’s Syndrome that Joanne recruited so she researched the condition to learn more about it. She also consulted Neil to find out how he felt the company could best support his needs.
Message to other employers
“We don’t view disability as an issue or a problem. Our priority is to ensure that employees have the right skillset and fit in with the company”.
Joanne Smart. HR Manager
Employee's story
So far, Neil’s job as a Software Developer has met his expectations. His job involves using programming languages to design systems that control computer functions. Neil says that the job suits his personality and his passion for numbers and computers. “I really enjoy working with numbers” says Neil, “and I love seeing the sequences and patterns in them.”
Making the most of talents and skills
Neil makes the most of his talents and skills at work and hasn’t allowed his disability to get in the way of his career. From his own personal experiences, Neil is aware that some employers view people who have long term health conditions as ‘a problem’. However, as far as his employment is concerned, Neil treats his Asperger’s Syndrome as a self-managing condition.
Neil has developed strategies to deal with situations that he finds difficult or uncomfortable. He has also learnt much from the example of his father. “My dad was a good role model” says Neil, “he had Asperger’s Syndrome and Multiple Sclerosis but worked in spite of his disabilities because he always focused on what he could do rather than what he couldn’t do.”
Introduction
Software Developer, Neil Shepherd was shocked to discover he had Asperger’s Syndrome. Up until the age of about 31, he had lived with the condition without even knowing he had it. Asperger’s Syndrome is a form of autism and is often referred to as a hidden disability because it is not easily recognised. It’s also described as a 'spectrum disorder' because it affects people in different ways. According to the National Autistic Society, people with Asperger’s Syndrome have difficulties with social communication, social interaction and social imagination.
However, Neil’s disability has not been a barrier to his career. He is a computer science graduate and has been able to find employment that allows him to make the best use of his qualifications and his talents. “I need to keep busy all the time and I find my work challenging, in a positive way” says Neil who works for Esteem, an IT company.
Employer's story
Although the nature of the professional work at Esteem is highly technical, Human Resources Manager, Joanne Smart, always looks for more than technical skills and qualifications when recruiting new staff. She tries to employ people who will fit in with the company and its culture. “It’s not something you can determine from a CV or application” says Joanne, “you can only really assess whether someone will fit into the company when you meet them at interview.”
Best person for the job
Esteem’s two stage interview process gives Joanne and other managers the opportunity to learn more about a candidate’s personality, attitude and motivation. In Neil’s case, Joanne says that his ‘personability’ was a key strength of his interview and this, along with his qualifications and experience made him the best candidate out of the ten people who were interviewed for the job.
Neil was the first employee with Asperger’s Syndrome that Joanne recruited so she researched the condition to learn more about it. She also consulted Neil to find out how he felt the company could best support his needs.
Message to other employers
“We don’t view disability as an issue or a problem. Our priority is to ensure that employees have the right skillset and fit in with the company”.
Joanne Smart. HR Manager
Employee's story
So far, Neil’s job as a Software Developer has met his expectations. His job involves using programming languages to design systems that control computer functions. Neil says that the job suits his personality and his passion for numbers and computers. “I really enjoy working with numbers” says Neil, “and I love seeing the sequences and patterns in them.”
Making the most of talents and skills
Neil makes the most of his talents and skills at work and hasn’t allowed his disability to get in the way of his career. From his own personal experiences, Neil is aware that some employers view people who have long term health conditions as ‘a problem’. However, as far as his employment is concerned, Neil treats his Asperger’s Syndrome as a self-managing condition.
Neil has developed strategies to deal with situations that he finds difficult or uncomfortable. He has also learnt much from the example of his father. “My dad was a good role model” says Neil, “he had Asperger’s Syndrome and Multiple Sclerosis but worked in spite of his disabilities because he always focused on what he could do rather than what he couldn’t do.”
Sunday, May 11, 2008
How 'Second Life' therapy helps Asperger's patients
Have you ever been to Second Life?
It's an online world where people meet, date, conduct business and travel with virtual identities and pseudonyms.
But now, the funky computer pastime has been adopted by a local brain research center for treating autism, with very real results.
Matt Kratz, a brain health center client, brags about himself in a virtual job interview, where he can practice real-world social skills.
He has Asperger's Syndrome, a mild form of autism.
"I'm listening to the conversation, to pick up keys as to what to say and when to say it," he said.
It's part of an innovative new therapy offered at UTD Center for Brain Health, where patients interact with others as digital characters, or avatars, in Second Life - a virtual online world.
"Second Life is kind of this in between stage between what happens to him in real life, but it's beyond a therapy session, where it's kind of just role play," said director of the Center of Brain Health, Sandra Chapman.
The digital character conducting the practice job interview is a clinician in another room who's prepared to ask Kratz some challenging questions.
Asperger's patients typically have normal intelligence but some cognitive flaws involving change or social skills.
In the virtual therapy, Kratz actually trains his brain to adapt and respond.
"Of course, with the brain that's really about making new connections, so synapses or connections between nerve cells are really how behavior changes," said Kratz.
Kratz says the therapy has already helped him in real-life situations.
And the potential for this kind of therapy is broad.
"We're not only asking how's the brain working, but how do we make it work better?" said Chapman.
Training the brain using real-time conversations in a make-believe world.
It's an online world where people meet, date, conduct business and travel with virtual identities and pseudonyms.
But now, the funky computer pastime has been adopted by a local brain research center for treating autism, with very real results.
Matt Kratz, a brain health center client, brags about himself in a virtual job interview, where he can practice real-world social skills.
He has Asperger's Syndrome, a mild form of autism.
"I'm listening to the conversation, to pick up keys as to what to say and when to say it," he said.
It's part of an innovative new therapy offered at UTD Center for Brain Health, where patients interact with others as digital characters, or avatars, in Second Life - a virtual online world.
"Second Life is kind of this in between stage between what happens to him in real life, but it's beyond a therapy session, where it's kind of just role play," said director of the Center of Brain Health, Sandra Chapman.
The digital character conducting the practice job interview is a clinician in another room who's prepared to ask Kratz some challenging questions.
Asperger's patients typically have normal intelligence but some cognitive flaws involving change or social skills.
In the virtual therapy, Kratz actually trains his brain to adapt and respond.
"Of course, with the brain that's really about making new connections, so synapses or connections between nerve cells are really how behavior changes," said Kratz.
Kratz says the therapy has already helped him in real-life situations.
And the potential for this kind of therapy is broad.
"We're not only asking how's the brain working, but how do we make it work better?" said Chapman.
Training the brain using real-time conversations in a make-believe world.
'Second Life' therapy helping Asperger's patients
By JEFF BRADY
WFAA-TV
Have you ever been to Second Life?
It's an online world where people meet, date, conduct business and travel with virtual identities and pseudonyms.
But now, the funky computer pastime has been adopted by a local brain research center for treating autism, with very real results.
Matt Kratz, a brain health center client, brags about himself in a virtual job interview, where he can practice real-world social skills.
He has Asperger's Syndrome, a mild form of autism.
"I'm listening to the conversation, to pick up keys as to what to say and when to say it," he said.
It's part of an innovative new therapy offered at UTD Center for Brain Health, where patients interact with others as digital characters, or avatars, in Second Life - a virtual online world.
"Second Life is kind of this in between stage between what happens to him in real life, but it's beyond a therapy session, where it's kind of just role play," said director of the Center of Brain Health, Sandra Chapman.
The digital character conducting the practice job interview is a clinician in another room who's prepared to ask Kratz some challenging questions.
Asperger's patients typically have normal intelligence but some cognitive flaws involving change or social skills.
In the virtual therapy, Kratz actually trains his brain to adapt and respond.
"Of course, with the brain that's really about making new connections, so synapses or connections between nerve cells are really how behavior changes," said Kratz.
Kratz says the therapy has already helped him in real-life situations.
And the potential for this kind of therapy is broad.
"We're not only asking how's the brain working, but how do we make it work better?" said Chapman.
Training the brain using real-time conversations in a make-believe world.
WFAA-TV
Have you ever been to Second Life?
It's an online world where people meet, date, conduct business and travel with virtual identities and pseudonyms.
But now, the funky computer pastime has been adopted by a local brain research center for treating autism, with very real results.
Matt Kratz, a brain health center client, brags about himself in a virtual job interview, where he can practice real-world social skills.
He has Asperger's Syndrome, a mild form of autism.
"I'm listening to the conversation, to pick up keys as to what to say and when to say it," he said.
It's part of an innovative new therapy offered at UTD Center for Brain Health, where patients interact with others as digital characters, or avatars, in Second Life - a virtual online world.
"Second Life is kind of this in between stage between what happens to him in real life, but it's beyond a therapy session, where it's kind of just role play," said director of the Center of Brain Health, Sandra Chapman.
The digital character conducting the practice job interview is a clinician in another room who's prepared to ask Kratz some challenging questions.
Asperger's patients typically have normal intelligence but some cognitive flaws involving change or social skills.
In the virtual therapy, Kratz actually trains his brain to adapt and respond.
"Of course, with the brain that's really about making new connections, so synapses or connections between nerve cells are really how behavior changes," said Kratz.
Kratz says the therapy has already helped him in real-life situations.
And the potential for this kind of therapy is broad.
"We're not only asking how's the brain working, but how do we make it work better?" said Chapman.
Training the brain using real-time conversations in a make-believe world.
Subscribe to:
Posts (Atom)