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."
