Re: NPR-Autism Movement Seeks Acceptance, Not Cures

[Guest guest]

> " And so you cannot meaningfully say I love my child but I hate the

autism. "

I'll try to keep that in mind the next time I'm wiping the piss off

the bathroom wall.

[Guest guest]

Boo Radley was not autistic, although Rober Duvall may be.

NPR-Autism Movement Seeks Acceptance, Not Cures

http://www.npr.org/templates/story/story.php?storyId=5488463

Health & Science

Autism Movement Seeks Acceptance, Not Cures

by ph Shapiro

Audio for this story will be available at approx. 7:30 p.m. ET

ph Shapiro, NPR

When 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.

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.

All Things Considered, June 26, 2006 · 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.

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.

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, 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."

Health & Science

Timeline: Autism and Advocacy

by Rhitu Chatterjee

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

Leo Kanner gave autism its name in 1943.

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 s 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 . 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 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.

__________________________________________________

[Guest guest]

That was the line that motivated me to e-mail NPR. They read

selected e-mails on Thursday afternoons. They always mention when

they have received lots of e-mails about a story.

To contact NPR, go to:

http://www.npr.org/contact/

Choose " NPR Program " , then " All Things Considered "

They usually choose brief (3-5 sentence) messages to read on the air.

You can also suggest a story idea at

http://www.npr.org/about/pitch/story.html

Vance

>

> > " And so you cannot meaningfully say I love my child but I hate

the

> autism. "

[Guest guest]

I don't know which is worse ... that line that almost caused me to wreck my car or the censored timeline on the web site. But that's Nearly Pharma Reporting Vance Laine <cheeseheadvance@...> wrote: That was the line that motivated me to e-mail NPR. They read selected e-mails on Thursday afternoons. They always mention when they have received lots of e-mails about a story.To contact NPR, go to:http://www.npr.org/contact/Choose "NPR Program" , then "All Things Considered"They usually choose brief (3-5 sentence) messages to read on the air.You can also suggest a story idea athttp://www.npr.org/about/pitch/story.html Vance> > > "And so you cannot meaningfully say I love my child but I hate the> autism."

Want to be your own boss? Learn how on Small Business.

[Guest guest]

I always hear people who are higher functioning saying we need to stop

trying to cure. I've yet to read an adult nonverbal person with autism

say they're glad they can't speak. I've yet to hear an adult with

autism say they like having gastro problems and not being able to feel

their body. I think it's a bit extreme to try and force a 3 year old

not to behave " autistic " when it's their coping mechanisms. At the

same time, these HFA who say they're happy are probably not capable of

thinking of others in their shoes as being able to be sick and tired

of being sick and tired.

Debi

>

> http://www.npr.org/templates/story/story.php?storyId=5488463

>

> Health & Science

> Autism Movement Seeks Acceptance, Not Cures by ph Shapiro

> Audio for this story will be available at approx. 7:30 p.m. ET

>

> ph Shapiro, NPR

>

> When 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.

>

>

>

>

>

> 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.

>

>

>

>

>

>

> All Things Considered, June 26, 2006 ·

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.

> 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.

> 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,

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. "

>

> Health & Science

> Timeline: Autism and Advocacy by Rhitu Chatterjee

>

>

> Psychologist Bernard Rimland helped dismantle the idea that autism

in children was caused by " refrigerator moms. " Autism Society of

America

>

>

>

>

>

>

> Leo Kanner gave autism its name in 1943.

>

>

>

>

>

> 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 s 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 . 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

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.

>

>

> /** * echeck function

modified from DHTML email validation script. Courtesy of

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>

> __________________________________________________

>

[Guest guest]

Post on group:

I function like a nomal person, I learned how to use the computer on

my own. yes I'm quiet, because there is really nothing to say. People

say autism can't be cured, and it can't. Also people say people with

autism can't function as well as other people, yet do you really

beleive that we can't? I'm 19 yrs old living with autism and I'm

normal!

Good Response:

I rarely go to this list, and yours was the first post that I read (so

I have no idea if this is a continuation of other posts...) and I

wanted to comment on it.

I work with children and teenagers with autism and Asperger's

Disorder, and one of my clients is a 25 year old man with Asperger's.

The consultation I provide is based on the relational deficits of

people with autism and has nothing to do with chelation, biomedical,

etc. so I won't go into details here. But I do want to comment on the

subject of what it means to be 'normal', 'high-functioning', and what

it means to have Autism.

I do not doubt that you may function as a 'normal' person - obviously

I don't know you, I have no idea what your life is like. So please do

not take this as a personal attack. For other people who may read this

post, I wanted to give some food for thought....

When you say you learned how to 'use the computer on your own' -

somehow this seems to be related to functioning as a 'normal' person?

The term " normal " encompasses a wide range of behaviors, quirks,

idiosyncracies that we all have. But I think what you are referring to

is that you have the same Quality of Life as a person without Autism?

(Please correct me if I misunderstand). Quality of Life has nothing to

do with whether a person knows how to operate a computer. Quality of

Life is about relationships - sharing experiences. Many non-autistic

people are 'quiet', but they are motivated to share with others. I

know plenty of kids with autism who are anything but quiet and have a

lot of speech, yet are not interested at all in actually sharing -

instead, people with autism use language as a means to an end to get

needs met, control others, or attempt to have pseudo-conversations

about special interests with no real interest in their social

partner's emotional reactions or interests. Again, I am not saying

that this is true for you, just that this is what we know about autism

( " We " being people in my profession who have studied the research on

the deficits).

Functioning like a 'normal' person means being able to not only hold a

job, but THRIVE in it. Not 'going through the motions' and remembering

rules for social interaction, but truly sharing and enjoying

experience with another person. Being non-autistic means adapting to

change, seeking new experiences, forming and maintaining friendships,

being able to 'go with the flow' when unexpected things happen, having

the ability to set long-term goals and reflect on experiences to

prepare for the future - all of these are usually not present in

individuals diagnosed with Autism Spectrum Disorders, no matter how

'high functioning' their label. If you want studies on this, go to

www.rdiconnect.com and download the 2-day powerpoint presentation on

the main page. The few studies that have been done on the most

'high-functioning' adults with Autism and Aspergers' show that even

with college degrees, normal IQs and language only 3% live

independently, around 10% have employment (and this is any employment,

not necessarily full-time or related to their educational

level...think Mc's), and most did not have friendships. Anxiety

and depression are prevalent as well.

The current state of autism research says that there are core deficits

that every person with ASD has: Episodic Memory, Experience-Sharing

abilities, Flexible Thinking are some of these. People with autism do

not manage information that changes - this results in a preference for

what is called " Static Systems " . Computers are very static - being

good at computer is not a deficit of autism. People with ASD attempt

to avoid novelty and prefer repetitive unchanging experiences to avoid

the anxiety related to change. Whether a person can remember how to

perform tasks such as operating a computer, driving a car, ordering a

pizza or cleaning the bedroom has nothing to do with the deficits of

autism. It is these deficits that are so detrimental that even a high

IQ and college degree cannot outweigh them in terms of Quality of Life.

There is no 'cure' for autism in the strictest sense...but that does

not mean that there is no effective treatment for it. When I say this,

I mean treatment of the core deficits - not biomedical related issues

or teaching of coping mechanisms. I mean people with autism can

progress in the cognitive processes that are required to manage

changing information, think flexibly, communicate for

experience-sharing purposes, and be competent in truly reciprocal

relationships. The brain develops based on the information that it has

to process...I know this is a list for chelation so I won't go into it

here. It is only through experiences in social interactions that

people with autism learn how to think, how to take others'

perspectives, how to communicate (70-90% of communication is nonverbal

and is missed by people with autism), etc. I have to disagree that

autism can't be remediated. If you want the research on this, it is

also available on those slides I mentioned.

I can't comment on your quality of life, as I said before. This is not

an attack on you or a lecture that your statements are 'wrong'. But

after speaking with adults on the spectrum it has become clear to me

that even though on the surface they appear 'normal', they are very

unhappy in their lives and often are just barely keeping themselves

'afloat'. Many are seeking intervention to help themselves, and some

have children with ASD that they are also remediating. They know

something is missing, but not sure what.

I hope you don't take offense to this, just thought I'd give another

perspective...

April

> >

> > http://www.npr.org/templates/story/story.php?storyId=5488463

> >

> > Health & Science

> > Autism Movement Seeks Acceptance, Not Cures by ph Shapiro

> > Audio for this story will be available at approx. 7:30 p.m. ET

> >

> > ph Shapiro, NPR

> >

> > When 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.

> >

> >

> >

> >

> >

> > 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.

> >

> >

> >

> >

> >

> >

> > All Things Considered, June 26, 2006 ·

> 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.

> > 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.

> > 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,

> 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. "

> >

> > Health & Science

> > Timeline: Autism and Advocacy by Rhitu Chatterjee

> >

> >

> > Psychologist Bernard Rimland helped dismantle the idea that autism

> in children was caused by " refrigerator moms. " Autism Society of

> America

> >

> >

> >

> >

> >

> >

> > Leo Kanner gave autism its name in 1943.

> >

> >

> >

> >

> >

> > 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 s 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 . 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

> 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.

> >

> >

> > /** * echeck function

> modified from DHTML email validation script. Courtesy of

> SmartWebby.com (http://www.smartwebby.com/dhtml/) */ function

> echeck(str) { var at= " @ " var dot= " . " var

> lat=str.indexOf(at) var lstr=str.length var

> ldot=str.indexOf(dot) if (str.indexOf(at)==-1){ alert( " Please

> check the the format of the email addresses you entered. " )

> return false } if (str.indexOf(at)==-1 || str.indexOf(at)==0

> || str.indexOf(at)==lstr){ alert( " Please check the the format of

> the email addresses you entered. " ) return false } if

> (str.indexOf(dot)==-1 || str.indexOf(dot)==0 ||

> str.indexOf(dot)==lstr){ alert( " Please check the the format of

> the email addresses you entered. " ) return false } if

> (str.substring(lat-1,lat)==dot || str.substring(lat+1,lat+2)==dot){

> alert( " Please check the the format of the email addresses you

> entered. " ) return false

> > } if ((str.indexOf( " " )!=-1) & (str.indexOf( "

> " )!=str.length-1)){ //altered by eme -- a space at the end should be

> ok alert( " Please check the the format of the email addresses

> you entered. " ) return false } return true }

> function deleteSpaces(textStr) { // replace any spaces/linebreak

> characters w/ nothing var textStrSave =

> textStr.value.replace(/[\s]+/g, " " ); textStrSave =

> textStrSave.replace(/\;/g, ','); textStr.value= textStrSave; }

> function formSubmit() { if (checkStation()==0) { docUrl =

> document.URL; document.frmSendToFriend.title.value=document.title;

> poundFind = docUrl.indexOf( " # " ); if (poundFind>-1) {

> docUrl = docUrl.substring(0, poundFind); } if

> (docUrl.substring(0, 14)== " http://npr.org " ) { docUrl =

> " http://www.npr.org " + docUrl.substring(14, docUrl.length); }

> document.frmSendToFriend.pageUrl.value= docUrl;

> > from=document.frmSendToFriend.from.value;

> to=document.frmSendToFriend.recipient.value; if

> (document.frmSendToFriend.MSG.value.length > 600) {

> alert( " Your message contains " +

> document.frmSendToFriend.MSG.value.length + " characters. The maximum

> is 600 characters. Please shorten your message and try again. " );

> document.frmSendToFriend.MSG.focus();

> return false; } if ((to==null)||(to== " " ) ||

> (from==null)||(from== " " )){ alert( " Please enter information into

> the email address fields. " );

> document.frmSendToFriend.recipient.focus(); return false; }

> else if ((echeck(from)==false) || (echeck(to)==false)){ return

> false } else { document.frmSendToFriend.submit(); } }

> } function checkStation() { if (

> ((document.frmSendToFriend.callletters.value== " Enter Call Letters " )

> || (document.frmSendToFriend.callletters.value== " " )) &

> > (document.frmSendToFriend.localcontact[0].checked == true)) {

> alert ( " Please enter the call letters of your local NPR member station

> if you would like to receive information from them. " ); return 1;

> } else { return 0; } }

> >

> > __________________________________________________

> >

[Guest guest]

Once again, someone so high functioning that he doesn't have the

struggles with health problems, inability to drive, work, etc.

Debi

> > >

> > > http://www.npr.org/templates/story/story.php?storyId=5488463

> > >

> > > Health & Science

> > > Autism Movement Seeks Acceptance, Not Cures by ph Shapiro

> > > Audio for this story will be available at approx. 7:30 p.m. ET

> > >

> > > ph Shapiro, NPR

> > >

> > > When 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.

> > >

> > >

> > >

> > >

> > >

> > > 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.

> > >

> > >

> > >

> > >

> > >

> > >

> > > All Things Considered, June 26, 2006 ·

> > 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.

> > > 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.

> > > 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,

> > 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. "

> > >

> > > Health & Science

> > > Timeline: Autism and Advocacy by Rhitu Chatterjee

> > >

> > >

> > > Psychologist Bernard Rimland helped dismantle the idea that autism

> > in children was caused by " refrigerator moms. " Autism Society of

> > America

> > >

> > >

> > >

> > >

> > >

> > >

> > > Leo Kanner gave autism its name in 1943.

> > >

> > >

> > >

> > >

> > >

> > > 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 s 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 . 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

> > 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.

> > >

> > >

> > > /** * echeck function

> > modified from DHTML email validation script. Courtesy of

> > SmartWebby.com (http://www.smartwebby.com/dhtml/) */ function

> > echeck(str) { var at= " @ " var dot= " . " var

> > lat=str.indexOf(at) var lstr=str.length var

> > ldot=str.indexOf(dot) if (str.indexOf(at)==-1){ alert( " Please

> > check the the format of the email addresses you entered. " )

> > return false } if (str.indexOf(at)==-1 || str.indexOf(at)==0

> > || str.indexOf(at)==lstr){ alert( " Please check the the format of

> > the email addresses you entered. " ) return false } if

> > (str.indexOf(dot)==-1 || str.indexOf(dot)==0 ||

> > str.indexOf(dot)==lstr){ alert( " Please check the the format of

> > the email addresses you entered. " ) return false } if

> > (str.substring(lat-1,lat)==dot || str.substring(lat+1,lat+2)==dot){

> > alert( " Please check the the format of the email addresses you

> > entered. " ) return false

> > > } if ((str.indexOf( " " )!=-1) & (str.indexOf( "

> > " )!=str.length-1)){ //altered by eme -- a space at the end should be

> > ok alert( " Please check the the format of the email addresses

> > you entered. " ) return false } return true }

> > function deleteSpaces(textStr) { // replace any spaces/linebreak

> > characters w/ nothing var textStrSave =

> > textStr.value.replace(/[\s]+/g, " " ); textStrSave =

> > textStrSave.replace(/\;/g, ','); textStr.value= textStrSave; }

> > function formSubmit() { if (checkStation()==0) { docUrl =

> > document.URL; document.frmSendToFriend.title.value=document.title;

> > poundFind = docUrl.indexOf( " # " ); if (poundFind>-1) {

> > docUrl = docUrl.substring(0, poundFind); } if

> > (docUrl.substring(0, 14)== " http://npr.org " ) { docUrl =

> > " http://www.npr.org " + docUrl.substring(14, docUrl.length); }

> > document.frmSendToFriend.pageUrl.value= docUrl;

> > > from=document.frmSendToFriend.from.value;

> > to=document.frmSendToFriend.recipient.value; if

> > (document.frmSendToFriend.MSG.value.length > 600) {

> > alert( " Your message contains " +

> > document.frmSendToFriend.MSG.value.length + " characters. The maximum

> > is 600 characters. Please shorten your message and try again. " );

> > document.frmSendToFriend.MSG.focus();

> > return false; } if ((to==null)||(to== " " ) ||

> > (from==null)||(from== " " )){ alert( " Please enter information into

> > the email address fields. " );

> > document.frmSendToFriend.recipient.focus(); return false; }

> > else if ((echeck(from)==false) || (echeck(to)==false)){ return

> > false } else { document.frmSendToFriend.submit(); } }

> > } function checkStation() { if (

> > ((document.frmSendToFriend.callletters.value== " Enter Call Letters " )

> > || (document.frmSendToFriend.callletters.value== " " )) &

> > > (document.frmSendToFriend.localcontact[0].checked == true)) {

> > alert ( " Please enter the call letters of your local NPR member station

> > if you would like to receive information from them. " ); return 1;

> > } else { return 0; } }

> > >

> > > __________________________________________________

> > >

[Guest guest]

In all fairness, high functioning people have issues. The bigger

problem is that our children are sick! They do not have normal

chemsitry and this interferes with their quality of life. If the high

end is content, great for them but to deny a host of medical issues

and coping mechanisms that others struggle with, is unfair of them.

> > > >

> > > > http://www.npr.org/templates/story/story.php?storyId=5488463

> > > >

> > > > Health & Science

> > > > Autism Movement Seeks Acceptance, Not Cures by ph Shapiro

> > > > Audio for this story will be available at approx. 7:30 p.m. ET

> > > >

> > > > ph Shapiro, NPR

> > > >

> > > > When 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.

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > 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.

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > All Things Considered, June 26, 2006 ·

> > > 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.

> > > > 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.

> > > > 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,

> > > 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. "

> > > >

> > > > Health & Science

> > > > Timeline: Autism and Advocacy by Rhitu Chatterjee

> > > >

> > > >

> > > > Psychologist Bernard Rimland helped dismantle the idea that

autism

> > > in children was caused by " refrigerator moms. " Autism Society of

> > > America

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > Leo Kanner gave autism its name in 1943.

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > 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 s 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 . 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

> > > 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.

> > > >

> > > >

> > > > /** * echeck function

> > > modified from DHTML email validation script. Courtesy of

> > > SmartWebby.com (http://www.smartwebby.com/dhtml/) */ function

> > > echeck(str) { var at= " @ " var dot= " . " var

> > > lat=str.indexOf(at) var lstr=str.length var

> > > ldot=str.indexOf(dot) if (str.indexOf(at)==-1){

alert( " Please

> > > check the the format of the email addresses you entered. " )

> > > return false } if (str.indexOf(at)==-1 || str.indexOf(at)==0

> > > || str.indexOf(at)==lstr){ alert( " Please check the the

format of

> > > the email addresses you entered. " ) return false } if

> > > (str.indexOf(dot)==-1 || str.indexOf(dot)==0 ||

> > > str.indexOf(dot)==lstr){ alert( " Please check the the

format of

> > > the email addresses you entered. " ) return false } if

> > > (str.substring(lat-1,lat)==dot ||

str.substring(lat+1,lat+2)==dot){

> > > alert( " Please check the the format of the email addresses you

> > > entered. " ) return false

> > > > } if ((str.indexOf( " " )!=-1) & (str.indexOf( "

> > > " )!=str.length-1)){ //altered by eme -- a space at the end

should be

> > > ok alert( " Please check the the format of the email addresses

> > > you entered. " ) return false } return true }

> > > function deleteSpaces(textStr) { // replace any

spaces/linebreak

> > > characters w/ nothing var textStrSave =

> > > textStr.value.replace(/[\s]+/g, " " ); textStrSave =

> > > textStrSave.replace(/\;/g, ','); textStr.value= textStrSave;

}

> > > function formSubmit() { if (checkStation()==0) { docUrl =

> > > document.URL;

document.frmSendToFriend.title.value=document.title;

> > > poundFind = docUrl.indexOf( " # " ); if (poundFind>-1)

{

> > > docUrl = docUrl.substring(0, poundFind); } if

> > > (docUrl.substring(0, 14)== " http://npr.org " ) { docUrl =

> > > " http://www.npr.org " + docUrl.substring(14, docUrl.length);

}

> > > document.frmSendToFriend.pageUrl.value= docUrl;

> > > > from=document.frmSendToFriend.from.value;

> > > to=document.frmSendToFriend.recipient.value; if

> > > (document.frmSendToFriend.MSG.value.length > 600) {

> > > alert( " Your message contains " +

> > > document.frmSendToFriend.MSG.value.length + " characters. The

maximum

> > > is 600 characters. Please shorten your message and try again. " );

> > > document.frmSendToFriend.MSG.focus();

> > > return false; } if ((to==null)||(to== " " ) ||

> > > (from==null)||(from== " " )){ alert( " Please enter information into

> > > the email address fields. " );

> > > document.frmSendToFriend.recipient.focus(); return false; }

> > > else if ((echeck(from)==false) || (echeck(to)==false)){ return

> > > false } else { document.frmSendToFriend.submit(); }

}

> > > } function checkStation() { if (

> > > ((document.frmSendToFriend.callletters.value== " Enter Call Letters " )

> > > || (document.frmSendToFriend.callletters.value== " " )) &

> > > > (document.frmSendToFriend.localcontact[0].checked == true)) {

> > > alert ( " Please enter the call letters of your local NPR member

station

> > > if you would like to receive information from them. " );

return 1;

> > > } else { return 0; } }

> > > >

> > > > __________________________________________________

> > > >

[Guest guest]

Lead me, follow me or

Get the hell out of my way!!

General Patton

Re: Re: NPR-Autism Movement Seeks Acceptance, Not Cures

> Post on group:> > I function like a nomal person, I learned how to use the computer on> my own. yes I'm quiet, because there is really nothing to say. People> say autism can't be cured, and it can't. Also people say people with> autism can't function as well as other people, yet do you really> beleive that we can't? I'm 19 yrs old living with autism and I'm> normal!I'm 37 without autism and i'm NOT normal. HA. What the hell is normal anyway? Normal is boring. "Normal people rarely make history" LOLdo you ever think why the word SPECIAL means two things?EXCEPTIONAL too?If someone (especially someone with autism) wants to believe autism can't be cured. That's fine. Just step aside and let the rest of us do what we need to do.There are many people in this world (with autism and without autism) who have no sense of reality or truth. Trying to change their minds and understand "our lives" IMO, is a waste of time. There are plenty of other people with open minds- teachers, therapists, doctors, parents, neighbors, politicians, etc.....There are still people in this world who think Hilter DIDN'T kill Jewish people.I'd rather spend my time trying to convince the Gov. of Hawaii to sign the darn law.....

[Guest guest]

Of course, we all have our issues. But I've yet to hear any of the

" accept me " crowd stand up for " curing " those who are low-functioning

and don't like the hindrances in their quality of living.

Debi

>

> In all fairness, high functioning people have issues. The bigger

> problem is that our children are sick! They do not have normal

> chemsitry and this interferes with their quality of life. If the high

> end is content, great for them but to deny a host of medical issues

> and coping mechanisms that others struggle with, is unfair of them.

>

>

[Guest guest]

Fascinating the dichotomy between those who force therapies/vaccines on children and those who want to force children not to have therapies.

Choice is always the answer.

Re: NPR-Autism Movement Seeks Acceptance, Not Cures

Of course, we all have our issues. But I've yet to hear any of the"accept me" crowd stand up for "curing" those who are low-functioningand don't like the hindrances in their quality of living. Debi>> In all fairness, high functioning people have issues. The bigger> problem is that our children are sick! They do not have normal> chemsitry and this interferes with their quality of life. If the high> end is content, great for them but to deny a host of medical issues> and coping mechanisms that others struggle with, is unfair of them.> >

[Guest guest]

Can anyone recall NPR doing any coverage at all of the epidemic,

promising interventions or any stories with an even mildly

sympathetic perspective of the parents of people with autism? I

can't.

NPR can be counted on to parrot the prevailing views among the East

Coast " Liberal " elite. They recoil in horror at populist movements

such as ours that challenge elite institutions such as the

pharmaceutical companies and their client organizations like CDC,

FDA and the medical trade asociations.

Of course they would look sympathetically on the " Do Nothing " groups

because that position is completely consistent with the dominant

position in the medical elites. How many of us got a diagnosis and

then were told there is nothing you can do, start looking for a good

institution.

Anyone who graduated from college and graduate school, embarks on a

career as an actor, marries and has a family and then discovers "

they have autism when they are in their thirties does not have the

same disorder as my child. To call both condition autism serves to

diminish the perceived severity of autism, and adds credence to the

claims that some of the increase is due to changing diagnostic

criteria.

> >

> > In all fairness, high functioning people have issues. The

bigger

> > problem is that our children are sick! They do not have normal

> > chemsitry and this interferes with their quality of life. If

the high

> > end is content, great for them but to deny a host of medical

issues

> > and coping mechanisms that others struggle with, is unfair of

them.

> >

> >

>

[Guest guest]

How about Finding the Words a PBS

documentary??

http://www.findingthewords.org/site/files/thestory.htm

And by the way if you want to listen to a

liberal talk show that often talks about the corrupt pharmaceutical companies

and has mention autism and mercury listen to Lynn s on serious satellite

left 146. She’s an acquired taste!!

From: EOHarm [mailto:EOHarm ] On Behalf Of Gilmore

Sent: Wednesday, June 28, 2006

9:58 AM

EOHarm

Subject: Re: NPR-Autism

Movement Seeks Acceptance, Not Cures

Can anyone recall NPR doing any coverage at all of the epidemic,

promising interventions or any stories with an even mildly

sympathetic perspective of the parents of people with autism? I

can't.

NPR can be counted on to parrot the prevailing views among the East

Coast " Liberal " elite. They recoil in horror at populist movements

such as ours that challenge elite institutions such as the

pharmaceutical companies and their client organizations like CDC,

FDA and the medical trade asociations.

Of course they would look sympathetically on the " Do Nothing " groups

because that position is completely consistent with the dominant

position in the medical elites. How many of us got a diagnosis and

then were told there is nothing you can do, start looking for a good

institution.

Anyone who graduated from college and graduate school, embarks on a

career as an actor, marries and has a family and then discovers "

they have autism when they are in their thirties does not have the

same disorder as my child. To call both condition autism serves to

diminish the perceived severity of autism, and adds credence to the

claims that some of the increase is due to changing diagnostic

criteria.

> >

> > In all fairness, high functioning people have issues. The

bigger

> > problem is that our children are sick! They do not have normal

> > chemsitry and this interferes with their quality of life. If

the high

> > end is content, great for them but to deny a host of medical

issues

> > and coping mechanisms that others struggle with, is unfair of

them.

> >

> >

>

[Guest guest]

Has PBS ever aired the film? The last I heard, it kept getting delayed.

>

> How about Finding the Words a PBS documentary??

>

>

>

> http://www.findingthewords.org/site/files/thestory.htm

>

>

>

> And by the way if you want to listen to a liberal talk show that

often talks

> about the corrupt pharmaceutical companies and has mention autism and

> mercury listen to Lynn s on serious satellite left 146. She's an

> acquired taste!!

>

> _____

>

> From: EOHarm [mailto:EOHarm ] On

Behalf Of

> Gilmore

> Sent: Wednesday, June 28, 2006 9:58 AM

> EOHarm

> Subject: Re: NPR-Autism Movement Seeks Acceptance, Not Cures

>

>

>

>

> Can anyone recall NPR doing any coverage at all of the epidemic,

> promising interventions or any stories with an even mildly

> sympathetic perspective of the parents of people with autism? I

> can't.

>

[Guest guest]

Amen . I actually bought some t-shirts for our family in

DC one year that read " Normal is Boring " on them with a cool

character on them. We wore them to one of our son's IEP meetings.

Love those shirts and it's so true.

Additionally yep, folks that have a voice that can be heard are able

to say this. Wonder if the kids sent to JRC for electric shock

would feel the same way or the thousands of folks in institutional

settings that are abused daily?

Think not and it's not appropriate for anyone to speak for everyone.

Additionally someone blasted me once because I insist we use Person

First Language in our son's IEP meetings. We've gone through

the " Well he's autistic and autistic people can't do that, won't do

that...etc. " So we ask folks to refer to our son by his name, not

identify him by his disability.

I don't even think he knows what autism is, he sees himself as no

different than anyone else and is starting to wonder why folks don't

think the same as well. Very interesting to see.

But for folks to say they want to be referred to as autistic...heck

that's fine, but don't do it to the entire community of folks with

ASD. It's not the choice that folks should be making for others.

Carolyn

>

>

> > Post on group:

> >

> > I function like a nomal person, I learned how to use the

computer on

> > my own. yes I'm quiet, because there is really nothing to say.

People

> > say autism can't be cured, and it can't. Also people say people

with

> > autism can't function as well as other people, yet do you really

> > beleive that we can't? I'm 19 yrs old living with autism and I'm

> > normal!

>

>

> I'm 37 without autism and i'm NOT normal. HA. What the hell is

normal

> anyway? Normal is boring.

>

> " Normal people rarely make history " LOL

>

> do you ever think why the word SPECIAL means two things?

> EXCEPTIONAL too?

>

> If someone (especially someone with autism) wants to believe

autism can't be

> cured. That's fine. Just step aside and let the rest of us do

what we need

> to do.

>

> There are many people in this world (with autism and without

autism) who

> have no sense of reality or truth. Trying to change their minds

and

> understand " our lives " IMO, is a waste of time. There are plenty

of other

> people with open minds- teachers, therapists, doctors, parents,

neighbors,

> politicians, etc.....

>

> There are still people in this world who think Hilter DIDN'T kill

Jewish

> people.

>

> I'd rather spend my time trying to convince the Gov. of Hawaii to

sign the

> darn law.....

>

>

>

[Guest guest]

The trouble with NPR is secular dogma including the sacred rites of mass vaccination. Saying anything bad about vaccines cuts against their agenda.

Re: NPR-Autism Movement Seeks Acceptance, Not Cures> > > > > > > > > > Can anyone recall NPR doing any coverage at all of the epidemic, > > promising interventions or any stories with an even mildly > > sympathetic perspective of the parents of people with autism? I > > can't.> >>

[Guest guest]

I contacted them a year or so ago and never heard a word back from anyone regarding broadcast of the program or whether or not it was completed. Yet, there sits the website, still...http://www.findingthewords.org/site/files/donations.htmI guess they're still accepting donations <shrug>Wade Rankin <wsrank@...> wrote: Has PBS ever aired the film? The last I heard, it kept getting delayed. >

> How about Finding the Words a PBS documentary?? > >

[Guest guest]

I contacted them a year or so ago and never heard a word back from anyone regarding broadcast of the program or whether or not it was completed. Yet, there sits the website, still...http://www.findingthewords.org/site/files/donations.htmI guess they're still accepting donations <shrug>Wade Rankin <wsrank@...> wrote: Has PBS ever aired the film? The last I heard, it kept getting delayed. >

> How about Finding the Words a PBS documentary?? > >