NY Times: How About Not 'Curing' Us, Some Autistics Are Pleading

[Guest guest]

Note: forwarded message attached.

{The article's headline calls attention to "some" autistics, but much

of the article's rhetoric conveys "autistics" and glosses over the

"some". A HFAspie is not at all the same as a low functioning child who

thoroughly qualifies for a DSM-IV categorization as "autistic". The

reporter's heart seems in a good place, but her sloppiness regarding

the autism-spectrum and its subgroups is a tad unsettling - as is the

reporter's ability to be aware of ABA while not mentioning biomed

evaluations and subsequent child-specific treatments. Perhaps someone

can post Amy Harmon's NYT email address. -}

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How About Not 'Curing' Us, Some Autistics Are Pleading

By AMY HARMON

http://www.nytimes.com/2004/12/20/health/20autism.html

Tara Engberg for The New York Times

{photo caption} Meagor, who has Asperger's

syndrome, was

absorbed with his pen as he waited recently for a screening of

"Rainman" at his experimental Aspie school in Boiceville, N.Y.

Paradiz, rear, teaches there.

BOICEVILLE,

N.Y. - Jack , a 10th grader at a school for autistic teenagers

and an expert on the nation's roadways, tore himself away from his

satellite map one recent recess period to critique a television program

about the search for a cure for autism.

"We don't have a disease," said Jack, echoing the opinion of the

other 15 boys at the experimental Aspie school here in the Catskills.

"So we can't be 'cured.' This is just the way we are."

From behind his GameBoy, Mulvaney, another 10th grader,

objected to the program's description of people "suffering" from

Asperger's syndrome, the form of autism he has.

"People don't suffer from Asperger's," said. "They suffer

because they're depressed from being left out and beat up all the time."

That, at least, was what happened to these students at mainstream

schools before they found refuge here.

But unlike many programs for autistics, this school's program does

not try to expunge the odd social behaviors that often make life so

difficult for them. Its unconventional aim is to teach students that it

is O.K. to "act autistic" and also how to get by in a world where it is

not.

Trained in self-advocacy, students proudly recite the positive

traits autism can confer, like the ability to develop uncanny expertise

in an area of interest. This year's class includes specialists on

supervolcanoes and medieval weaponry.

"Look at Jack," pointed out. "He doesn't even need a map.

He's like a living map."

The new program, whose name stands for Autistic Strength, Purpose

and Independence in Education - and whose acronym is a short form of

Asperger's - is rooted in a view of autism as an alternative form of

brain wiring, with its own benefits and drawbacks, rather than a

devastating disorder in need of curing.

It is a view supported by an increasingly vocal group of adult

autistics, including some who cannot use speech to communicate and have

been institutionalized because of their condition. But it is causing

consternation among many parents whose greatest hope is to avoid that

very future for their children. Many believe that intensive behavioral

therapy offers the only rescue from the task of caring for

unpredictable, sometimes aggressive children, whose condition can take

a toll on the entire family.

The autistic activists say they want help, too, but would be far

better off learning to use their autistic strengths to cope with their

autistic impairments rather than pretending that either can be removed.

Some autistic tics, like repetitive rocking and violent outbursts, they

say, could be modulated more easily if an effort were made to

understand their underlying message, rather than trying to train them

away. Other traits, like difficulty with eye contact, with grasping

humor or with breaking from routines, might not require such huge

corrective efforts on their part if people were simply more tolerant.

Spurred by an elevated national focus on finding a cure for autism

at a time when more Americans are receiving autism diagnoses than ever

before - about one in 200 - a growing number of autistics are staging

what they say amounts to an ad hoc human rights movement. They sell

Autistic Liberation Front buttons and circulate petitions on Web sites

like neurodiversity.com to "defend the dignity of autistic citizens."

The Autistic Advocacy e-mail list, one of dozens that connect

like-minded autistics, has attracted nearly 400 members since it

started last year.

"We need acceptance about who we are and the way we are," said Joe

Mele, 36, who staged a protest at Beach, on Long

Island, while 10,000 people marched to raise money for autism research

recently. "That means you have to get out of the cure mind-set."

A neurological condition that can render standard forms of

communication like tone of voice, facial expression and even spoken

language unnatural and difficult to master, autism has traditionally

been seen as a shell from which a normal child might one day emerge.

But some advocates contend that autism is an integral part of their

identities, much more like a skin than a shell, and not one they care

to shed.

The effort to cure autism, they say, is not like curing cancer, but

like the efforts of a previous age to cure left-handedness. Some worry

that in addition to troublesome interventions, the ultimate cure will

be a genetic test to prevent autistic children from being born.

That would be a loss, they say, not just for social tolerance but

because autistics, with their obsessive attention to detail and

eccentric perspective, can provide valuable insight and innovation. The

neurologist Oliver Sacks, for instance, contends that Henry Cavendish,

the 18th-century chemist who discovered hydrogen, was most likely

autistic.

"What they're saying is their goal is to create a world that has no

people like us in it," said Jim Sinclair, who did not speak until he

was 12 and whose 1993 essay "Don't Mourn for Us" serves as a touchstone

for a fledgling movement.

At this year's "Autreat," an annual spring gathering of autistics,

attendees compared themselves to gay rights activists, or the deaf who

prefer sign language over surgery that might allow them to hear. Some

discussed plans to be more openly autistic in public, rather than take

the usual elaborate measures to fit in. Others vowed to create more

autistic-friendly events and spaces.

Autreat participants, for instance, can wear color-coded badges

that indicate whether they are willing to be approached for

conversation. Common autistic mannerisms, like exceedingly literal

conversation and hand-flapping, are to be expected. Common sources of

autistic irritation, like casual hugs and fluorescent lighting, are

not.

For many parents, however, the autistic self-advocacy movement often

sounds like a threat to the brighter future they envision for their

children. In recent months, the long-simmering argument has erupted

into an online brawl over the most humane way to handle an often

crippling condition.

On e-mail lists frequented by autistics, some parents are derided

as "curebies" and portrayed as slaves to conformity, so anxious for

their children to appear normal that they cannot respect their way of

communicating. Parents argue that their antagonists are showing a

typical autistic lack of empathy by suggesting that they should not try

to help their children. It is only those whose diagnosis describes them

as "high functioning" or having Asperger's syndrome, they say, who are

opposed to a cure.

"If those who raise their opposition to the so-called oppression of

the autistic would simply substitute their usage of 'autism or

autistic' with 'Asperger's,' their arguments might make some sense,"

Lenny Schafer, publisher of the widely circulated Schafer Autism

Report, wrote in a recent e-mail message. "But I intend to cure, fix,

repair, change over etc. my son and others like him of his profound and

typical disabling autism into something better. Let us regain our

common sense."

But the autistic activists say it is not so easy to distinguish

between high and low functioning, and their ranks include both.

In an effort to refute parental skeptics, the three owners of

autistics.org, a major Web hub of autistic advocacy, issued a statement

listing their various impairments. None of them are fully

toilet-trained, one of them cannot speak, and they have all injured

themselves on multiple occasions, they wrote: "We flap, finger-flick,

rock, twist, rub, clap, bounce, squeal, hum, scream, hiss and tic."

The touchiest area of dispute is over Applied Behavior Analysis, or

A.B.A., the therapy that many parents say is the only way their

children were able to learn to make eye contact, talk and get through

the day without throwing tantrums. Some autistic adults, including some

who have had the therapy, say that at its best it trains children to

repress their natural form of expression and at its worst borders on

being abusive. If an autistic child who screams every time he is taken

to the supermarket is trained not to, for example, he may still be

experiencing pain from the fluorescent lights and crush of strangers.

"Behaviors are so often attempts to communicate," said Jane

Meyerding, an autistic woman who has a clerical job at the University

of Washington and is a frequent contributor to the Autistic Advocacy

e-mail discussion list. "When you snuff out the behaviors you snuff out

the attempts to communicate."

Perhaps the most public conflict between parents and adult

autistics came in a lawsuit brought by several Canadian

families who argued that the government should pay for their children's

A.B.A. therapy because it is medically necessary. Dawson, an

autistic woman in Montreal,

submitted testimony questioning the ethics of the therapy, which the

Canadian Supreme Court cited in its ruling against the families in

November.

Ms. Dawson's position infuriates many parents who are fighting

their own battles to get governments and insurance companies to pay for

the expensive therapy.

"I'm afraid of this movement," said Kit Weintraub, the mother of

two autistic children in Madison, Wis.

Ms. Weintraub's son, , has benefited greatly from A.B.A.,

she said, and she is unapologetic about wanting to remove his remaining

quirks, like his stilted manner of speaking and his wanting to be

Mickey Mouse for Halloween when other 8-year-olds want to be Frodo from

"The Lord of the Rings."

"I worry about when he gets into high school, somebody doesn't want

to date him or be his friend," she said. "It's no fun being different."

The dispute extends even to the basic terminology of autism.

"I would appreciate it, if I end up in your article, if you

describe me as 'an autistic' or 'an autistic person,' versus the

'person with...,' " Ms. Dawson wrote in an e-mail message. "Just like

you would feel odd if people said you were a 'person with femaleness.' "

Ms. Weintraub insists on the opposite. "My children have autism,

they are not 'autistics,' " she wrote in her own widely circulated

essay, "A Mother's Perspective." "It is no more normal to be autistic

than it is to have spina bifida."

Terry , 37, who has Asperger's syndrome, said he was not

opposed to the concept of a cure for autism but he suggested that there

was a pragmatic reason to look for other options.

"I don't think it's going to be easy to find," Mr. said.

"That's why I opt for changing the world around me; I think that does

more long-term good."

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