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."
