Sunday, November 04, 2007

A QUESTION OF BALANCE

There was a time when I was engaged in what I thought was a meaningful on-line dialog with proponents of the “neurodiversity” movement. Although I still have friends on "the other side," the dialog didn’t seem to be going anywhere because we could not agree on the most basic concepts: the nature of ASDs and the morality of the process of cure. Still, there was ⎯ and is ⎯ enough common ground that I will often check in on their on-line world to see if there is anything to be learned.

One thing I have learned is that it is rare to find anything written about those basic and irreconcilable issues that can be called balanced. I was pleased to see an exception in the Globe and Mail from Canada. In a recent article entitled ‘Autistics’: We don’t want a cure, Erin Anderssen does a fine job of reporting on (if you’ll pardon the expression) the spectrum of opinions.

She writes of parents like Andrea-Bradford Lambert, who “want their children to be seen as different, rather than disabled,” and who “have been joined by an increasingly vocal group of adult autistics (as they prefer to be called) who say they do not want to be cured.” As Ms. Anderssen explains, those advocates believe that “autism should be seen as part of the ‘neurodiversity’ needed to evolve smarter human beings, just as biodiversity helps life flourish on Earth.”

On the other hand, there is another parent, Harold Doherty, whose son, Conor, has what is described as severe, low-functioning autism.
. . . He communicates verbally through sporadic shrieks and requires constant care; at school, he receives behavioural therapy in a separate room.

One afternoon, while his father was momentarily distracted on the phone, he wandered out the door and across a busy intersection. “He doesn’t understand the risks of cars,” says Mr. Doherty, who worries that some day his son might be abused and unable to tell anyone. Conor often bites his mother and has pulled his father’s arm away from the steering wheel while driving.

“But they don't like us to talk about that,” Mr. Doherty says. He believes that people who make the case for neurodiversity often trivialize autism and deny the difficulties faced by families with disabled children. People with Asperger’s don’t have any business telling him what kind of treatment his son needs, he says.

“Some of them are gifted. Great. But my son isn’t. And many autistics aren’t,” he says. “If I could cure my son with a wave of my hand, I would do it in a heartbeat.”
Then there’s Tanya Stephenson, a mother who tries to balance the concerns of eliminating what is disabling while preserving whatever it is that makes her son unique. The interventions she uses are primarily behavioral therapies.
Each time they undo a behaviour that identifies Tyler as autistic, they wrestle with the choice. When he scores in a video game, for example, they have taught him to squeeze his hands together instead of flapping his arms wildly.

“And we debate this,” Ms. Stephenson says, “because if you’re at a football game, you see some pretty wacky stuff happening when people are so excited because someone scores a touchdown. They look more odd than my son does. So why don’t we try to squash that behaviour?”

In the end, while Ms. Stephenson knows that some autistics and families would criticize her for it, she wants Tyler to have a relationship with his parents, to enjoy the magic of his world while still participating in theirs.

“I am not trying to change that really unique part of him,” she says. “I am saying this is who he is, this is the way he is and if you understand him, you will find he can bring a pretty neat perspective.”

But how does that perspective get communicated, she asks, if he doesn’t have the social skills to share it?
Ms. Anderssen’s article, although more balanced than most, does lean more to the neurodiversity side with its emphasis on “acceptance.” I’ve always thought that the hang up over that word creates a divide that may not be as wide as it appears. Most “curebies” (a category I place myself in) I know truly accept their children. The only thing they do not accept is the inevitability of the disability that comes with the autism package.

Although Ms. Anderssen’s article seems to lean to the neurodiversity side, much of what one hears from the ND camp is, not surprisingly, critical. In particular, Michelle Dawson, the ex-postal worker turned research assistant and commentator ⎯ who is discussed and quoted at length in the piece in a relatively flattering manner ⎯ has expressed her displeasure. I have read Ms. Dawson’s critique, and her chief complaint seems to be that the Globe and Mail article does not mirror her own unique view of autism.

Well, Ms. Dawson, it’s not exactly the piece I would have written either. It doesn’t reflect what I believe about autism. What it expresses, however, is that there just may be more than one way of looking at an issue that is too complex for any simple responses. Considering what we usually see in the press, I can live with that.

1 Comments:

Blogger Steve said...

I keep hoping that the divide is not as wide as it appears as well. It really does seem like just a battle of words between two sides who ultimately want the best for their children.

11/6/07, 12:18 AM  

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