10-09-2006, 09:40 AM
Four-year-old Adam Wolfond is comforted by shadows. Jumping on his backyard trampoline, with his arms at his side and his face turned to the sun, he wiggles his hands furiously so that, in the lower periphery of his vision, he sees sunlight flicker through his tiny fingers.
His parents noticed this shadow play as early as his first birthday party. "I think there's something wrong," his father, Henry Wolfond, said at the time, to which his mother, Estee Klar-Wolfond, answered crossly, "There is nothing wrong with my child."
Today, as she leads an effort to rebrand autism as a positive condition -- an ability rather than a disability, even a gift -- she still believes there is nothing wrong with Adam, despite knowing he is autistic, and that his shadow play is properly called self-stimulatory behaviour, like his habit of spinning around and around, and strangely never losing his balance. The trampoline has a similar calming effect.
"I could never think about Adam losing his Adamness," Ms. Klar-Wolfond told a packed uptown art gallery on Thursday night, where a show of paintings by autistic artists went on display. It is part of The Joy of Autism, Ms. Klar-Wolfond's month-long lecture series that begins next week.
It is also part of the wider and controversial "neurodiversity" movement, according to which autism is simply a different way of thinking, not a disability, and certainly not an illness.
Advocates claim that treating autism is akin to treating left-handedness or homosexuality --an impossible goal that can only end in disaster. They claim the words used to describe autism are unfairly loaded, and focus on disability over ability.
"Semantics are very important to us," Ms. Klar-Wolfond said. "Our children have so many hurdles to face, at least we can advocate for accurate representation and a rigorous science."
Skeptics see the movement as fetishizing disability, or the blinkered refusal of parents to accept that their child is less than perfect and in need of treatment.
Hanging over this debate is the hypothetical cure, which some consider the goal of the current scientific effort to map autism's genetic aspects, and others see as the planned genocide of peculiar people.
If there was a cure, "I would be injecting," said Wendy Roberts, director of the Autism Research Unit at Toronto's Hospital for Sick Children, and a leader of the genome-mapping project.
She meets parents who have been beaten black and blue by their autistic children, and spent more than they can afford on treatment that is not covered by provincial health plans.
"Those people would laugh at the concept that autism is something to cherish," she said.
She has also met people with autistic siblings who refuse to have children of their own until they can be sure they will not be autistic. Such a prenatal genetic test, however, is at least 10 years away.
And yet, she says it is ridiculous to call autism a disease.
"I think of autism as being a difference in wiring," she said. It is like a collection of otherwise normal "quirks" that are taken to such an extreme that they impair a person's ability to function. But it is still "on a continuum of normal."
http://www.canada.com/nationalpost/news
His parents noticed this shadow play as early as his first birthday party. "I think there's something wrong," his father, Henry Wolfond, said at the time, to which his mother, Estee Klar-Wolfond, answered crossly, "There is nothing wrong with my child."
Today, as she leads an effort to rebrand autism as a positive condition -- an ability rather than a disability, even a gift -- she still believes there is nothing wrong with Adam, despite knowing he is autistic, and that his shadow play is properly called self-stimulatory behaviour, like his habit of spinning around and around, and strangely never losing his balance. The trampoline has a similar calming effect.
"I could never think about Adam losing his Adamness," Ms. Klar-Wolfond told a packed uptown art gallery on Thursday night, where a show of paintings by autistic artists went on display. It is part of The Joy of Autism, Ms. Klar-Wolfond's month-long lecture series that begins next week.
It is also part of the wider and controversial "neurodiversity" movement, according to which autism is simply a different way of thinking, not a disability, and certainly not an illness.
Advocates claim that treating autism is akin to treating left-handedness or homosexuality --an impossible goal that can only end in disaster. They claim the words used to describe autism are unfairly loaded, and focus on disability over ability.
"Semantics are very important to us," Ms. Klar-Wolfond said. "Our children have so many hurdles to face, at least we can advocate for accurate representation and a rigorous science."
Skeptics see the movement as fetishizing disability, or the blinkered refusal of parents to accept that their child is less than perfect and in need of treatment.
Hanging over this debate is the hypothetical cure, which some consider the goal of the current scientific effort to map autism's genetic aspects, and others see as the planned genocide of peculiar people.
If there was a cure, "I would be injecting," said Wendy Roberts, director of the Autism Research Unit at Toronto's Hospital for Sick Children, and a leader of the genome-mapping project.
She meets parents who have been beaten black and blue by their autistic children, and spent more than they can afford on treatment that is not covered by provincial health plans.
"Those people would laugh at the concept that autism is something to cherish," she said.
She has also met people with autistic siblings who refuse to have children of their own until they can be sure they will not be autistic. Such a prenatal genetic test, however, is at least 10 years away.
And yet, she says it is ridiculous to call autism a disease.
"I think of autism as being a difference in wiring," she said. It is like a collection of otherwise normal "quirks" that are taken to such an extreme that they impair a person's ability to function. But it is still "on a continuum of normal."
http://www.canada.com/nationalpost/news