I am very impressed with Joseph Brean, the author of this article. The reason is because he has presented the discourse on Autism, and more broadly disability, as one of opportunity. He has recognized the vitality that exists in the charateristics that make people like Adam Wolfond and Jonathan Lerman [artist of painting shown to the left] both people and autistic – people who are “normal” if we allow ourselves to view humans as neurologically diverse, unique in charateristics, actions, bodies, emotions and being. In other words, we can either use the word “normal” and count everyone in OR realize that there is no “normal”, but rather everyone is diferent from each other.
The author of this article has heard the messages from the auties and advocates thereof and is contributing to move these important perspectives into the fore of Canadian society.
Now that everyone is coming to think about the opportunities that accompany inclusion, the discourse will likely move to a recognition that only in being in relationship to others can the contributions of people be as profound as they are capable.
Here’s a piece of Redefinig Autism:
“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.”
TORONTO – 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.”
Neurodiversity advocates argue it is better than normal, or at least no worse.
In her book Through the Eyes of Aliens, Jasmine Lee O’Neill, an American selective mute autistic, who can speak but chooses not to, writes that autistics live “like a shy sea creature inside a vibrant, colourful, self-containing shell home.”
She refers to her own autism as “a rainbow prism… a home… a way of life… not a prison.
“Trying to make your autistic child seem less autistic is to admit that you’re not happy with her as she is,” Ms. O’Neill writes. “Since the inner world of the autistic is something one is born with, it would be terrible to try to take it away… You should not seek to change what you are, or try to do it to another.”
To a parent, that might seem unfair in the extreme. On Ms. O’Neill’s analysis, any parent who has corrected their child’s cleft palate or sent them to speech therapy does not truly love their child.
But Peter Szatmari, head of Psychiatry and Behavioural Neurosciences at McMaster University and a long-time autism researcher, said the competing notions of gift and disability are “two sides of the same coin. The gift comes about because there’s a disability there in the first place.”
He said autistic children ought to be treated, but there comes a point when what needs to change is not the autistic, but their environment and the people in their life. The cure, on this view, is not a cure at all, but an accommodation.
“The trick is when does one shift from treating the child to changing the environment,” he said.
Autism, which literally means “self-ism,” first shows itself in infancy with impaired communication and social skills, and a preference for repetitive behaviour.
As the autistic child gets older, any shift from normal patterns, or the experience of meeting strangers, or even making eye-contact, can cause great distress and anxiety, which is frequently described as “physical” pain.
Treatment programs are difficult because, unlike in mental illnesses such as schizophrenia, there is no “normal” to which an autistic can return, although some seem to go into a temporary or permanent remission.
It is this variability in autism that poses the main problem for the neurodiversity movement.
For one child, autism might seem like a gift, the clinical name for a sensitive soul turned in upon itself.
But for another, the condition might be so severe as to leave him an anguished mute, unable to make friends or relate to his family, at risk of self-harm, and a physical danger to anyone around him.
The stereotype of the autistic genius also complicates matters by placing an unfair expectation on parents, who can feel like failures if their child does not become a prodigy along the lines of Jonathan Lerman, an 18-year-old autistic whose work is the centrepiece of The Joy of Autism exhibit.
“That’s rare, and I don’t want parents to feel like a second failure if their kid doesn’t have savant tendencies,” Dr. Roberts said.
She said it is not even clear whether geniuses, artistic or otherwise, are more common among autistics than the wider “neurotypical” population.
Michelle Lane, who recently founded a preschool for autistic children in Toronto’s east end, and now has plans for an elementary school because of the strong demand, said she wishes there was a cure, even though she would never say the word around parents.
“It’s wonderful to look at all the beautiful things they can do,” she said of her young students, while one of them skipped languidly across her little classroom, occasionally jumping on a mini-trampoline, but otherwise entertaining himself by spinning round and round, just like Adam Wolfond.
“But for a child who’s non-verbal, or an adult who can’t go to the bathroom or blow their nose, do I think that a cure would be a good thing? Yes,” she said.
THE LANGUAGE OF NEURODIVERSITY
– Autie: an autistic. Many autistics find this term preferable to “person with autism,” which they consider insensitive, like referring to a “person with blackness” or a “person with Jewishness.”
– Aspie: someone with Asperger’s Syndrome, a usually milder form of autism.
– Curebie: someone obsessed with curing autism, or who believes such a cure is possible.
– Uncle Tom Autie: an autistic who regards their condition as a disease or a failing.
– Neurodiversity: the notion that autism is one of many ways that human brains can work, and is therefore not something that should be eradicated.
– Neurotypical: someone who is not autistic
– Big Worlder: another term for neurotypical
– Stimmies: self-stimulatory behaviour, such as repetitive hand movements or rocking back and forth, which comfort autistics.
Selective deafness – close attention to quiet noises while ignoring loud ones, which is a typical feature of autistics.
© National Post 2006