Autism Movement Seeks Acceptance, Not Cures Diagnoses of autism are on the rise, and one result has been the start of high-profile campaigns to raise money for research. Another trend has been far less noticed: an increase in self-advocacy groups that aren't pushing for a cure, but acceptance.
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Autism Movement Seeks Acceptance, Not Cures

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Autism Movement Seeks Acceptance, Not Cures

Autism Movement Seeks Acceptance, Not Cures

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From NPR News, this is ALL THINGS CONSIDERED. I'm Michele Norris.


And I'm Melissa Block.

For a child or adult with autism, something as basic as communicating or interacting with others can be hard to do. Autism can be mild or severely disabling. Children especially may be overly sensitive to touch and sound, including everyday sounds, like honking horns.

NORRIS: Sometimes these problems fade over time. Because autism is so puzzling and the number of people with autism keeps growing, there have been new high-profile efforts to raise money for research towards treatment or a cure. But now some adults with autism say they don't want a cure. They want acceptance the way they are.

As NPR's Joseph Shapiro reports, some want to celebrate their autism.


The train out of Grand Central Station in New York is packed with commuters. Michael John Carley is the wiry man in jeans and a dark shirt, shirt tails hanging out. On this standing-room only train, you'd never pick him as the man with autism. Carley himself didn't know he was autistic until he was 36 years old. The diagnosis changed everything he had ever understood about himself.

Mr. JOHN CARLEY (Asperger's patient): It was biblical. Of course you say to yourself, no, that can't be. It's garbage. Come on. Come on.

SHAPIRO: He'd only just heard about his kind of autism, Asperger's Syndrome, sometimes called geek syndrome because people with Asperger's, like Michael John Carley, often seem quirky, eccentric, but highly intelligent. They have trouble reading other people's emotions, so often they bumble in social situations.

When Carley got the diagnosis, at first he got depressed. And yet the diagnosis fit like a glove, he says. It explained things about his life.

Mr. CARLEY: All of those experiences I was walking away from scratching my head, going what the heck just happened here. Finally, explanation. Finally, a sense of why and how.

SHAPIRO: What sort of things happened in your life? What are you talking about?

Mr. CARLEY: Well, suddenly, a friendship would just end and you had no idea what you had said. Suddenly, somebody would look at you with a face that said, you really offended me here, and I wouldn't have the first clue as to what I had done.

SHAPIRO: It was Carley's son who got diagnosed first. The boy at 3 barely talked. But he built stunning towers with dog food cans. Asperger's is often genetic, so diagnosis of the son led to diagnosis of the father. Carley had been an actor, a playwright. He once hosted a classical music show on public radio. He could just keep his Asperger's Syndrome a secret. He could pass. But a few days after he got his diagnosis -

Mr. CARLEY: I was on an elevator with somebody that I was working with and 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, nothing like that.

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

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

SHAPIRO: It was at that moment Carley knew he'd go public. Three years ago he started GRASP. It stands for the Global and Regional Asperger Syndrome Partnership. Today, it's got 11 support groups around the country. The one in Wallingford, Connecticut, is meeting tonight. Carley has come to run it.

Mr. CARLEY: My name is Michael John Carley. I have Asperger's Syndrome, and I have a nine-year-old son that has Asperger's Syndrome.

SHAPIRO: The support groups get together once a month.

MARTY: My name is Marty. I have Asperger's Syndrome.

GREGORY: My name is Gregory. I have Asperger's Syndrome.

SHAPIRO: They meet at a special education school in a room jammed with chairs wall to wall. There are 24 men and four women. The youngest is 18, the oldest, 65. Asperger's is a more recently recognized form of autism, officially about a dozen years old. It's mildly disabling for some, severely disabling for others. Some in this room have always been called autistic. Others got different labels first, learning disabled, mentally retarded, mentally ill.

JOCELYN: My name is Jocelyn. I have Asperger's Syndrome.

JEFF: Hi. I'm Jeff. I have Asperger's.

ALAN: My name is Alan. I have Asperger's Syndrome.

SHAPIRO: The autistics here 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.

Mr. CARLEY: Simon, what's your next bulletin board?

Mr. SIMON KAIMOWITZ (Asperger's patient): My job is driving me crazy.

SHAPIRO: Simon Kaimowitz is 18. His t-shirt says independent. He's got a wispy red beard and a baby face. At his feet is the black file box he always carries. It's got what he calls his research, the notes for a science fiction story he is writing. 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.

Mr. KAIMOWITZ: I am overwhelmed. I am stressed. I am going nuts. And on top of that, I've requested help from my bosses and they aren't giving it to me.

SHAPIRO: Others in the room give Kaimowitz advice on how to approach his boss and they talk about 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 she did work, Downs had to stop her favorite way of stimming.

Ms. COURTNEY DOWNS (Asperger's patient): When I was stressed, like I would kind of skip around in circles for long periods of time for no reason to calm myself down, no apparent reason.

SHAPIRO: 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 coworker. 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. Skipping around in circles might be a healthy aerobic workout, but it isn't accepted.

Ms. DOWNS: And I had to learn that I couldn't do that if I wanted to keep the job.

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

(Soundbite of typing)

Ms. AMANDA BAGGS (Asperger's patient): (Through computer) We perceive the world differently, we think differently and we respond to the world differently, and that goes for all of us, not just some of us.

SHAPIRO: Amanda Baggs is a 25-year-old woman with more typical 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. Partly because she doesn't speak, doctors have called her low functioning.

Ms. BAGGS: (Through computer) Oh, good grief. Yes. The only label I've ever formally gotten is low functioning. I don't believe in functioning levels. High functioning and low and all of that crud, that is really mostly illusions in people's heads.

SHAPIRO: Sometimes Baggs wears a t-shirt that says, Not being able to speak is not the same as not having anything to say.

Ms. BAGGS: (Through computer) Well, the main theme of the blog is that all people are valuable.

SHAPIRO: Baggs is a blogger. She writes thoughtfully, passionately about autism. The Internet has provided a community for autistics.

Ms. BAGGS: (Through computer) Many of us have a lot of trouble with face-to-face interaction and are also extremely isolated. Like a lot of autistic people, I will rarely even leave the house. A lot of us have problems with spoken language and so a lot of us find it easier to write on the Internet than to talk in person. There are 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 organized.

SHAPIRO: Another place where the autism pride movement has organized is at an annual retreat called Autreat. Jim Sinclair got the idea after going to 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, a convention for and by other autistics.

Mr. JIM SINCLAIR (Organizer, Autreat): So Autreat is a way to celebrate being together and finding each other. The presentations are not about how terrible it is to be autistic. It's about how to develop skills and how to learn information and how to do things as autistic people that will improve our lives.

SHAPIRO: This year's Autreat takes place this week in Philadelphia. With sessions on how to deal with prejudice, how to use technology for communication, Sinclair says Autreat is one place where autistic people can feel comfortable.

Mr. SINCLAIR: 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. If you want to sit off by yourself away from the group, nobody is 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.

SHAPIRO: More than one 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.

Mr. SINCLAIR: What the rest of the world needs to know about autism is it's not something that can be separated out from the person. It's part of the person. 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 is a girl. I'd like her to be a boy instead.

And 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 you wish that you had a different kind of child, we're hearing that, and what we're hearing is that you don't want us. You want someone else instead.

SHAPIRO: Back at the support group in Connecticut, Michael John Carley winds up the meeting.

Mr. CARLEY: All right. Good meeting. Thank you all for being a great, great group. Okay. You guys, if I can have help with the chairs, to clean up, that would be great. Thank you all.

SHAPIRO: 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'd understand social cues. He'd get along better in work and in everyday interactions. But Michael John Carley says he has come to like being autistic. He even celebrates it. So I asked him -

Okay, I'm a scientist. I've just invented a cure for autism. I have a pill right here that you can take and you won't have to deal with autism for the rest of your life. Do you want it?

Mr. CARLEY: No. Never will. Never ever will. I love the way my brain works. I always have. And it's one of the things that I can now admit to myself. I like the way, you know, 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 look at me and go, God, I wish I could do that. No, I'm not changing anything.

SHAPIRO: Joseph Shapiro, NPR News.

BLOCK: You can read about key moments in autism advocacy at

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