[Paleopsych] NYT: How About Not 'Curing' Us, Some Autistics Are Pleading

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How About Not 'Curing' Us, Some Autistics Are Pleading
NYT December 20, 2004
By AMY HARMON

BOICEVILLE, N.Y. - Jack Thomas, 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, Justin 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," Justin 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," Justin 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 Jones 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. Michelle 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, Nicholas, 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 Walker, 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. Walker
said. "That's why I opt for changing the world around me; I
think that does more long-term good."

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