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December 6, 2001        News Morgue Search  www.feat.org/search/news.asp

 

AWARENESS

·        Scholar Offers Poignant First-Person Account Of Overcoming Autism

·        Why a Dash Of Autism May Be Key To Success

·        Reader’s Posts

 

 

Scholar Offers Poignant First-Person Account Of Overcoming Autism

[By Hope Green in the Boston University Bridge.]

http://www.bu.edu/bridge/archive/2001/11-30/shore.htm

Stephen Shore has spent his life confounding other people’s expectations. When he was a toddler, a psychologist recommended that he be institutionalized after diagnosing him as “psychotic with autistic tendencies.” Fortunately Shore’s mother disregarded the advice, and his condition improved under her care.

In elementary school Shore lagged far behind his classmates academically, and his second-grade teacher said he’d never learn to read.  Yet a few years later he caught up in his subjects and began to excel in school. Today he’s pursuing a Ph.D. He once had trouble getting along socially. Now, at 40, he has a wide circle of friends and has been married for 11 years.

Shore (SFA’92, SED’02) works with autistic children and adults at the School of Education, where he expects to complete a doctorate in special education by next May. He’s on the board of the Asperger Syndrome Association of New England.

Although he used to hide his disability, he’s now eager to share his life story, hoping it will inspire others with autistic disorders to achieve their potential.

His first book, Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome (Autism Asperger Publishing Co., 2001) weaves personal narrative with practical advice for educators and parents of autistic children, as well as for autistic adults.

“My goal in writing this book,” he says, “was to present the auto-biography of a person diagnosed with autism and at the same time put it in the context of the current literature.”

While knowledge about autism has improved dramatically since Shore’s 1960s childhood in Newton, Mass., much of the public still has a distorted notion of the condition. For many people it conjures either the image of a small child rocking in a corner, or Raymond Babbitt, the autistic savant in the 1988 film Rain Man, who solved complex mathematical problems in his head but was so lost in his eccentric, private world that he couldn’t function on his own.

Yet autism is not one narrow diagnosis, but a wide array of developmental disorders ranging from severe autism to Asperger syndrome. The latter was named for pediatrician Hans Asperger, who identified the condition in the 1940s.

“Currently, Asperger syndrome is considered to be at the high-functioning end of the autism spectrum,” Shore explains. “People with the syndrome tend to be quite verbal, and with help, they’re able to navigate the challenges of education, employment, and relationships and lead a fulfilling life.”

Even so, Asperger syndrome does overlap with certain characteristics of autism, in particular a misinterpretation of sensory input to the brain.  “The information we receive through the senses comes through distorted, like a mistuned radio,” Shore says. “We often don’t pick up the environmental cues that we need in order to develop typically.”

At 18 months old Shore was hit with what he now calls the “autism bomb.” Until then a fairly typical baby, suddenly he became withdrawn, had extraordinarily frequent tantrums, and developed habits such as banging his head on his bedroom wall and spinning around with a finger in one ear. He also stopped speaking and would not eat solid food again until the age of four. With his nervous system on overdrive, he found haircuts excruciatingly painful and often recoiled from touch—phenomena he later outgrew.

His mother learned what she could about autism from consulting with psychologists, and worked with him at home using music therapy and cognitive-development exercises. She also sent him to a therapeutic nursery school in Boston, which helped him regain his verbal skills. Gradually he moved toward the less severe end of the autism spectrum, more closely fitting into the Asperger category.

But elementary school, Shore recalls, “was a social and academic disaster.” He was bullied in kindergarten, where he felt compelled to make strange repetitive sounds in an attempt to communicate with his peers instead of using the words he uttered at home. In second grade, instead of watching the teacher at the blackboard, he would sit at his desk and read astronomy books.

“They didn’t take the books away because they didn’t know what to do with me,” Shore says. “They left me to my own devices. I remember thinking that second grade was an awful lot of empty space and that I was spending a lot of time reading these astronomy books and copying diagrams. I wondered, ‘Shouldn’t I be learning math or reading or something else?’ I didn’t talk about it with anybody.”

Special interests are common for children with Asperger syndrome.  Besides astronomy, Shore was fascinated with watches, and at an early age could take them apart and put all the gears back together again in working order.

Bicycles were another fixation: he could take one look at a bike as a stranger rode by and recite the names of every one of its components, how much the bicycle weighed, how much it cost, and in what country it was manufactured.

“One day I was doing one of these data dumps to my parents,” he recalls, “and my mother said, ‘You know, you should really concentrate on the person who’s on the bicycle.’”

In retrospect, Shore believes his teachers could have used his special interests to teach him to read and do arithmetic. In his work at SED, he uses music as a tool for teaching communication skills. Sometimes he will even sing questions to students, and they will sing back their answers. “We see a lot of children with Asperger syndrome who have special interests— it might be math, it might be computers, it might be chess, but all of these provide pathways by which to educate a child.”

Shore’s grades improved in middle and high school, where he also learned to play several musical instruments. He thrived in college, double majoring in business and music education at UMass-Amherst, where he found friends who shared some of his many interests.

His early attempts at a career were a letdown, however. He took a job at an accounting firm, but found that he couldn’t fit into a corporate atmosphere. Office politics, hidden agendas, and disingenuous conversation—mere annoyances to most people—made him anxious. “People on the spectrum usually sense there’s something there, but that’s about as far as it goes,” he explains. “That can be somewhat of a scary feeling, because you don’t know whether to believe what you sense when it clashes with what you see or hear.”

Shore’s self-knowledge comes only in retrospect: by the time he went to college, he figured he had completely outgrown autism, and while he sensed that he might still have some cognitive problems, he ignored them.  But in the early 1990s, he was ready to take another look. While studying for a doctoral degree in music at the School for the Arts, he was having trouble with a portion of a qualifying exam, and his mental block vexed him.  “It came to the point where I wondered if something was haunting me from the past,” he says.

Sufficiently curious, Shore went for a neuropsychological test and received a diagnosis of a “learning disorder not otherwise specified with characteristics consistent with childhood autism.” His interest in autism deepened, leading him to consult with Arnold Miller, a prominent developmental psychologist who works with autistic children at a school in Jamaica Plain. Miller encouraged him to write a book, and with the manuscript in hand, Shore switched from the music program to SED.

In the course of his research, Shore began to recognize his own residual Asperger traits. To this day he is disturbed by distracting noises, has difficulty remembering faces, and rides his bicycle to avoid the sensory overload of the subway. At parties, where unstructured mingling troubles him, he engages in a specific activity such as playing the piano.

His disorder is not obvious to others, but if necessary he will reveal it to a new acquaintance or employer. The issue of whether and when to disclose that one is “on the spectrum” is something Shore addresses in his book, and it’s likely he will address the subject in more depth in future publications.

Spreading a greater understanding of the autism spectrum, helping parents find the right help for their children, and helping adults cope with its residual effects are among Shore’s chief goals. Experts in the field have high praise for his efforts thus far. In a review of Beyond the Wall, Thomas Cottle, an SED professor of education, writes, “The combination of pure storytelling and thoughtful insight makes this book a major contribution to our understanding and appreciation of these disorders.

Beyond the Wall humbles us and urges us to once again rethink the power of the human brain and the human spirit.”

 

 

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Why a Dash Of Autism May Be Key To Success

[By Nigel Hawkes.  Is Santa Claus an Asperger type?  Leon Trotsky?

Winnie the Pooh?  How many ways can you find to trivialize the autism

disability known as Asperger Syndrome?  Here is an article filled with

examples. -LS]

http://www.thetimes.co.uk/article/0,,2-2001561337,00.html

Many highly successful people owe their eminence to a small dose of autism, experts in the condition believe.

Autism is a disabling and alienating disorder, cutting sufferers off from normal human contact, but milder forms have probably helped successful scientists and artists to achieve the isolation they need to do their best work.

Hans Asperger, the Austrian doctor who first described what he called autistic psychopathy of childhood, said: “It seems that for success in science or art a dash of autism is essential.” He was describing a set of peculiarities, now named after him, that set apart some children.

Asperger’s patients were all boys, who often had relations with similar quirks. They were intelligent, original and good at abstract thinking, but ploughed their own furrow to the detriment of schoolwork.

They spoke “like little adults”, but were poor listeners, making little conversational effort. Asperger wondered if the condition he was observing might be “an extreme variant of male intelligence, of the male character”.

Since his work became widely known, psychiatrists have enjoyed retrospectively diagnosing figures from the past as having Asperger’s Syndrome.

Among the earliest, says the psychiatrist Lorna Wing, who played a leading part in making Asperger’s work known, was Brother Juniper, a follower of St Francis of Assisi. He displayed the literalness of mind often seen in autism.

Urged to give up his earthly goods to the poor, he stripped and handed over all his clothes.

A classic Asperger’s sufferer was Henry Cavendish, an 18^th-century aristocrat and scientist, who gave his name to the Cavendish Laboratory at Cambridge.

His most important discovery was hydrogen.

He was such a perfectionist that he published only those results that

satisfied him completely, and was so reluctant to make contact with others that he built his library four miles from his home.

His female servants were told to keep out of sight on pain of dismissal. To avoid talking to them, he ordered his dinner by means of a note placed on the hall table.

The philosopher Ludwig Wittgenstein did not speak until he was four.  He hated school, and did poorly there. He said that his inability to recognise another’s humanity was exactly like somebody listening to a foreign language he did not understand.

Yet Wittgenstein had a towering intellect which enabled him to write his philosophical work Tractatus Logico-Philosophicus while serving with the Austrian Army in the First World War. His relations with others were often strained. On a visit to the United States he was offered rye bread and cheese for his first lunch. He ate the same thing during his entire stay.

To Dr Wing, such examples emphasise how the isolating effects of Asperger’s Syndrome can be turned to advantage by those who also have the intelligence for intellectual pursuits. Other candidates for retrospective diagnosis, she suggests, include Albert Einstein and the composer Erik Satie. Others have nominated the Canadian pianist Glenn Gould, a genius of the keyboard, who retired from the concert stage at 31 and thereafter played only in the recording studio. He used the telephone as a lifeline, talking on it to people for hours at a time, enabling him to carry on relationships without having to meet people. The artist Andy Warhol, described by some who knew him as “socially inept”, also hated change, a common feature of autistic people.

Some have seen in his repeated images the obsessive preoccupations found in people with Asperger’s Syndrome.

Copyright 2001 Times Newspapers Ltd.

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Reader’s Posts

We are looking for a personable, compassionate, respite caregiver for our

seven year old daughter who has autism. Santa Clarita, CA. Please contact

Would be very interested to hear of anyones experience of the Edelson Centre

I am an ABA therapist/tutor moving to either New Orleans, LA or Mobile, AL.

I will be moving to either area depending on where I can find work.  I have

a B.A. in Psychology and have been working in ABA programs for the past two

Long Island (Nassau County) area family needs after school (4-6pm) teachers

for home program for a 6 year old autistic boy.  School district has

approved 14 hours per week.  Parent trainers, para-professionals and

 

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