http://www.nytimes.com/2001/11/13/health/children/13BOOK.html
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November 13, 2001 Asperger's: Information and Advice
By DAVID CORCORAN
As recently as a decade ago, this was a fairly typical set of responses to
a child with the odd constellation of behaviors caused by Asperger syndrome,
a neurological disorder: The preschool teacher, noting the boy's refusal to sit in a circle and his
obsession with electrical outlets and switches, suggested there might be
learning problems. The pediatric neurologist said he had attention deficit disorder. A
psychologist thought he needed behavior modification. The psychiatrist hired by the local school system thought he was autistic
and darkly suggested that he might be better off in an institution. And the parents my wife and I felt bewildered, frightened and alone. If only we'd had this book. While hardly the first to deal with Asperger's
a disorder so widely chronicled in recent years that it threatens to become
a fad diagnosis it is surely one of the best. Asperger syndrome is thought to be a form of autism. Though it was first
identified in 1944, few Americans had even heard of it until 50 years later,
when it was finally listed in the American Psychiatric Association's
diagnostic manual a surprising time lag, considering that experts now think
it occurs in 1 out of 250 to 500 people, or at least half a million
Americans. The authors of this book are not specialists, except in the sense that my
wife and I are: each has a son with Asperger's, which strikes boys at a rate
4 to 10 times as high as the rate in girls. But with prodigious research and
the help of their six-year-old Web site for parents, Oasis (for Online
Asperger Syndrome Information and Support, at www.aspergersyndrome.org), they
have assembled a remarkable amount of information and presented it in such a
levelheaded, clear-eyed manner that their guide could be a model for any self-
help book. Asperger's is characterized by social awkwardness, extreme
literal-mindedness and, most conspicuous, a pedantic, talky fixation on
arcane topics Pokιmon, dinosaurs, train schedules often to the exclusion
of nearly everything else. It was this trait that led Hans Asperger, the
Viennese psychiatrist who first identified the disorder, to call it
"little professor" syndrome. On paper, it sounds harmless, quirky,
even vaguely charming. But the "Oasis Guide" is admirably free of sugarcoating and inspirational
cant. In response to those who call Asperger's a mild form of autism, they
quote a mother who tartly points out, "My son doesn't have mild
anything." As they write, in perhaps the book's most crucial sentence,
"It is important to remember that Asperger syndrome is a serious,
lifelong disability that requires individualized expert intervention and
should be treated as such." With help, children with the syndrome can grow into successful adults,
though there are few if any studies to indicate how many do so. The book is
very good on what interventions are available and how parents can go about
finding them. It devotes chapters to medications, which cannot cure
Asperger's but may be effective against related disorders, like attention
deficit and depression; dealing with school authorities, who are required by
federal law to provide appropriate services to every child with disabilities;
and teaching social skills which, as the authors point out, are the best
predictors of success as an adult. Among other things, the book is testimony to the power of the Internet to
organize isolated, information-starved people into a community. The Oasis Web
site has had more than a million visits, and much of the good advice in the
guide comes from the parents and adults with Asperger syndrome, who proudly
call themselves Aspies who flock to its message boards to tell their
stories about schools, doctors, drugs and encounters with the
"neurotypical" world. Ultimately, these stories are not discouraging but reassuring, for they
make clear that no Asperger's parent is alone. Every child is different. But
every infuriating misdiagnosis, every uncaring (or caring) school official,
every setback, every gain finds an echo in the experiences of the hundreds of
people whose contributions make this book such a rich and human document.
"When the shock wears off, and it will," a parent writes about
first receiving the Asperger's diagnosis, "you will realize that this is
the same child you have nurtured and loved since birth." |
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