By Amy Harmon The New York Times Tuesday, December 21, 2004
BOICEVILLE, New York Jack Thomas, a 10th-grader at a school for autistic
teenagers and an expert on the United States' roadways, tore himself away
from his satellite map in 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 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 when they were at
mainstream schools, before they found refuge here. But unlike many programs
for autistics, this school's does not try to expunge the odd social
behaviors that often make life difficult for them. Its unconventional aim
is to teach students that it is O.K. to "act autistic" and also to explain
how to get by in a world where that is not accepted.
.
Trained in self-advocacy, students proudly recite the positive traits that
autism can confer, like the ability to develop great expertise in an area
of interest. This year's class includes specialists in supervolcanoes and
medieval weaponry.
.
"Look at Jack," Justin said. "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 shortened 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 as 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 that they want help, too, but that they 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 people tried 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
routine, might not require such huge corrective efforts on their part if
people were simply more tolerant of them.
.
Spurred by an elevated national focus on finding a cure for autism at a
time when more Americans - about 1 in 200 - are receiving diagnoses of
autism than ever before, 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 recently staged a protest at Jones Beach, on Long Island, New York,
while 10,000 people marched to raise money for autism research. "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 contends that Henry Cavendish, for instance,
the 18th-century chemist who discovered hydrogen, was probably 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 to 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 can, for instance, 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.
.
In e-mail circulated among 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 the parents should not try to
help their children. It is only those whose diagnosis describes them as
"high functioning" or as 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.
.
The touchiest area of dispute is over Applied Behavior Analysis, 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 the 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 behavioral analysis therapy
because it was 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.
.
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, Wisconsin.
.
Weintraub's son, Nicholas, has benefited greatly from Applied Behavioral
Analysis, she said, and she is unapologetic about wanting to remove his
remaining quirks. "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,"' Dawson
wrote in an e-mail message. "Just like you would feel odd if people said
you were a 'person with femaleness."'
.
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."
.
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International Herald Tribune.
< < Back to Start of Article BOICEVILLE, New York Jack Thomas, a
10th-grader at a school for autistic teenagers and an expert on the United
States' roadways, tore himself away from his satellite map in 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 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 when they were at
mainstream schools, before they found refuge here. But unlike many programs
for autistics, this school's does not try to expunge the odd social
behaviors that often make life difficult for them. Its unconventional aim
is to teach students that it is O.K. to "act autistic" and also to explain
how to get by in a world where that is not accepted.
.
Trained in self-advocacy, students proudly recite the positive traits that
autism can confer, like the ability to develop great expertise in an area
of interest. This year's class includes specialists in supervolcanoes and
medieval weaponry.
.
"Look at Jack," Justin said. "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 shortened 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 as 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 that they want help, too, but that they 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 people tried 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
routine, might not require such huge corrective efforts on their part if
people were simply more tolerant of them.
Full:
http://www.iht.com/articles/2004/12/20/news/health.html
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