Autism Movement Seeks Acceptance, Not Cures

John Michael Carley

When John Michael Carley's son was diagnosed with Asperger's syndrome, Carley learned the disorder was genetic. And then at age 36, Carley learned for the first time that he also had Asperger's. Joseph Shapiro, NPR hide caption

itoggle caption Joseph Shapiro, NPR

Michael John Carley is trying to change your image of autism. He has autism and he's happy just the way he is. He thinks that might surprise you.

Carley didn't know he was autistic until he was 36 years old. The diagnosis changed everything he'd ever understood about himself.

"It was biblical," Carley says, with a laugh, of getting the diagnosis. "Of course, you say to yourself, 'Nah that can't be. It's garbage.' "

Carley only heard about his kind of autism — Asperger's syndrome — shortly before he was diagnosed. It's sometimes called "geek syndrome" because people with Asperger's, like Carley, often seem quirky and eccentric, but highly intelligent.

Those with Asperger's also have trouble reading other people's emotions, so they often bumble in social situations.

When Carley was first given the diagnosis, he became depressed. Yet the diagnosis fit like a glove, he says. It explained things about his life.

"All those experiences, I was walking away scratching my head going, 'What the heck just happened here?' Finally explanation, finally a sense of why and how," he says.

"Suddenly a friendship would just end and you had no idea what you'd said," Carley explains. "Suddenly somebody would look at you with a face that said, 'You really offended me here,' and I wouldn't have the first clue about what I had done.' "

Carley's son was diagnosed first.] At age three, [he] barely talked, but he built stunning towers with cans of dog food.

Asperger's is often genetic, so the diagnosis for Carley's son led to the diagnosis for Carley.

Carley, an actor and a playwright, considered keeping his diagnosis a secret. But a few days after he got his diagnosis, he ran into a friend.

"I was on an elevator with somebody that I was working with," Carley recalls. "I told her about my son's diagnosis, I did not tell her about mine. And she said, 'Well, isn't that genetic?' And I said, 'Oh no. No no no. Nothing like that going on.' "

As soon as Carley said those words, the image of his young son flashed through his head. He felt guilty.

"And to me, I kind of stabbed my son in the back," says Carley. "And I told him — if only for a moment because I quickly knew what I had done — that he should be ashamed of what he has. Because I'm ashamed of it."

At that moment, Carley decided to go public. Three years ago, he started the Global and Regional Asperger Syndrome Partnership, or GRASP. It's a national autism advocacy group. Today, it has 11 support groups around the country.

Asperger's was only officially recognized as a form of autism about 12 years ago. It's mildly disabling for some; severely disabling for others.

Some of the members of a local GRASP support group in Wallingford, Conn., have always been called autistic. Others were first called learning-disabled, mentally retarded or mentally ill.

The autistics in the Wallingford support group move quickly to the usual subjects: romance and jobs. Most talk of wanting relationships, but not being very good at them. They talk about wanting to throw themselves into a job, but not being very good at keeping one.

Simon Kaimowitz is 18, with a baby face and a wispy red beard. His T-shirt says "independent." At his feet is the black box of files he always carries. It has what he calls his "research," the notes for a science fiction story he's writing.

Carley asks him what he wants to bring up. Kaimowitz lets out a deep sigh.

"My job is driving me crazy," he says.

Kaimowitz is starting a college program later this summer. Right now he works the night shift at a supermarket, bagging groceries, and doing small maintenance jobs. It's too much.

"I am overwhelmed. I am stressed. I am going nuts," Kaimowitz says, speaking rapidly. "And on top of that I've requested help from my bosses and they aren't giving it to me."

Others in the room give Kaimowitz advice on how to approach his boss. And they talk about the lessons they've learned on the job.

Courtney Downs talks about what she calls "stimming." It's a kind of repetitive motion. Hand flapping and rocking are common for autistics. It's a way to relieve stress. But when Downs did work, she had to give up her favorite way of stimming.

"When I was stressed, I would kind of skip around in circles for long periods of time for no reason to calm myself down," Downs tells the group. "No apparent reason. And I had to learn I couldn't do that if I wanted to keep the job."

People who aren't autistic have more accepted ways to let go of workplace stress: smoke a cigarette, grab a cup of coffee, gossip with a co-worker.

The trick for autistics like Downs is to figure out what they can and can't do, if they want to fit in with the rest of the world.

The people in this room are considered high-functioning autistics. But GRASP recently stopped using that term. To call some people high-functioning means you are calling other people low-functioning. And when you meet autistics, you realize that labels like that can fall apart pretty quickly.

Amanda Baggs, 25, has autism. And like some people with autism, she doesn't speak. Instead, she communicates by typing — with two fingers and fast — on her keyboard. The computer's voice speaks her words.

"We perceive the world differently," says Baggs through a computer. "We think differently. And we respond to the world differently. And that goes for all of us not just some of us."

Partly because she doesn't speak, doctors have called her low- functioning. It's a label Baggs says she doesn't put much stock in.

"Oh, good grief, yes. The only label I've ever formally gotten is low-functioning," she writes. "I don't believe in functioning levels. High- functioning and low and all that crud is mostly illusions in peoples' heads."

Sometimes Baggs wears a T-shirt that says: "Not Being Able to Speak is Not the Same as Not Having Anything to Say."

Baggs has a blog where she writes thoughtfully and passionately about autism. "The main theme of the blog," she says, "is that all people are valuable."

The Internet has provided a community for autistics.

"Many of us have a lot of trouble with face to face interaction and are also extremely isolated," Baggs says. "Like a lot of autistic people, I rarely even leave the house. A lot of us have trouble with spoken language, and so a lot of us find it easier to write on the Internet than to talk in person. There's a lot of us where we might not be able to meet anywhere else but online, and so that's been a lot of where we've organized."

The autism pride movement has also organized at an annual retreat called Autreat.

Jim Sinclair came up with the idea after going to the meetings of other autism organizations, where people with autism were depicted as tragic, sick and broken.

But some children and adults with autism change over time. As a kid, Sinclair could echo the words of others, but didn't talk until age 12.

So in 1996, Sinclair started the first Autreat, which is a convention for and by other autistics.

"Autreat is a way to celebrate each other or finding each other," says Sinclair. "The presentations are not about how terrible it is to be autistic, but how to develop skills and learn information and how to do things as autistic people that will improve our lives."

This year's Autreat is in Philadelphia from June 26 to June 29. There will be sessions on how to deal with prejudice and how to use technology for communication.

Sinclair says Autreat is one place where autistic people can feel comfortable.

"Nobody is expected to act normal. There is absolutely no pressure to make eye contact. To stop stimming. To not echo. To speak. To even join in," he says. "If you want to sit off by yourself away from the group, nobody's going to come and grab you and drag you to join in. You can sit there as long as you want. If you eventually want to join, you can. It's a safe environment. It's meant to be a safe environment."

More than 1 million Americans have autism. The autism pride movement claims just a tiny number of them.

Sinclair says they're responding to people who tell them autism is something that needs to be cured. They're asking — instead — to be accepted just the way they are.

"What the rest of the world needs to know about autism is that it's not something that can be separated out from the person, it's part of the person," explains Sinclair. "And so you cannot meaningfully say I love my child but I hate the autism.

"That's like saying I love my child, but I hate that she's a girl and I'd like her to be a boy instead. So when you're saying all of these things about how terrible it is that you've lost a child and how much your child is a disappointment to you, and how much that you wish you had a different kind of child, we're hearing that. And what we're hearing is that you don't want us and you want someone else instead."

Back at the support group in Connecticut, Michael John Carley winds up the meeting. It's been two hours. "Good meeting," he says from the front of the room. "Thank you all for being a great, great group."

Among people with autism, Carley is lucky. He's got a wife, two kids, and a mortgage.

Still, he knows life would be easier without his Asperger's syndrome. He would understand social cues. He would get along better in work and in everyday interactions.

But Carley says he's come to like being autistic. He even celebrates it.

If a cure were invented for autism, would he take it?

Carley does not hesitate before answering.

"No. Never will. Never ever will," he says. "I love the way my brain works, I always have and it's one of the things I can now admit to myself. I like the way I think in terms of numbers. I like the way I visualize things. I like the way most especially that I can bury myself in work that I love to a degree that makes everybody else in the world looks at me and go, 'God! I wish I could do that.' No, I am not changing anything."

A Timeline of Advocacy

Awareness about autism has come a long way since the disorder was first described in 1943.

  

Scroll down to read about key moments in the autism advocacy movement.

Timeline: Autism and Advocacy

Bernard Rimland

Psychologist Bernard Rimland helped dismantle the idea that autism in children was caused by "refrigerator moms." Autism Society of America hide caption

itoggle caption Autism Society of America
Leo Kanner gave autism its name in 1943.

Leo Kanner gave autism its name in 1943. hide caption

itoggle caption

Autism has always existed, says neurologist Oliver Sacks. But the condition wasn't named until 1943, so it's difficult to know much about autism's place in society before then. And more than 60 years after Leo Kanner described the developmental disorder, scientists still understand relatively little about it. Awareness about autism, however, has come a long way, thanks to researchers and a growing advocacy movement. Here, a timeline of the evolution of autism advocacy since 1943.

1943: Leo Kanner, a child psychiatrist at Johns Hopkins Hospital in Baltimore, describes the condition in 11 children. He coins the term "autism" from the Greek word autos, meaning self, owing to the withdrawn and solitary nature of the children. In his paper, Kanner hints at inadequate parenting as the cause of autism. He would later become the founder of the field of child psychiatry in the United States.

1944: Unaware of Kanner's work, a pediatrician from Vienna named Hans Asperger independently uses the word "autism" to describe four children who shared similar but milder forms of the cases reported by Kanner. All of Asperger's patients appear to be exceptionally gifted in various realms.

1949: Kanner publishes a paper in which he attributes autism to the lack of sufficient maternal care and emotional detachment of mothers from their children. This was the beginning of an era that regarded mothers of children with autism as cold, calling them "refrigerator mothers." The idea gave autism a social stigma; it was an era of severe emotional distress for families with autistic members.

1950s: Bruno Bettelheim, an Austrian psychologist teaching at the University of Chicago, begins to popularize Kanner's idea of "refrigerator mothers" through various articles. His most famous book about autism, The Empty Fortress: Infantile Autism and the Birth of Self, was published in 1967.

1964: Bernard Rimland, also a psychologist at the University of Chicago, publicly rebuts Bettleheim's ideas in Rimland's book, Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior. Rimland became involved with autism after his own son was diagnosed with autism in 1958 at the age of two.

1965: Rimland founds the Autism Society of America. The society currently has more than 120,000 members and more than 200 chapters throughout the United States. The establishment of ASA is seen as the beginning of a movement for more awareness and research on diagnoses and treatment of Autism Spectrum Disorders (ASD).

1980: Increasing data about autism and its neurological basis, in addition to the advocacy efforts of parents and relatives of those with autism, causes the American Psychiatric Association to add autism to its Diagnostic and Statistical Manual (DSM) of Mental Disorders.

1991: Lorna Wing, a psychologist from the United Kingdom, publishes an English translation of Asperger's original paper, and introduces the idea that autism includes a variety of disorders, ranging from those who have severe language, cognitive and sensory problems to those who are more mildly affected and have trouble understanding social interactions and nuances. Those on the latter end of the spectrum are of normal to higher than normal intelligence, and often are very gifted, as were Asperger's patients.

1992: Autism Network International is started by the combined effort of Americans Jim Sinclair and Kathy Grant and Australia's Donna Williams. ANI describes itself as "an autistic-run self-help and advocacy organization for autistic people."

1994: Asperger's syndrome is added to the DSM.

2003: Global and Regional Asperger Syndrome Partnership (GRASP), another self-advocacy organization, is started by Michael John Carley. GRASP's goal is to increase societal awareness about Asperger's syndrome and other forms of autism, as well as to educate people within the spectrum about their own condition by providing education and platforms within which to interact with other autistic individuals.

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