Tuesday, November 21, 2006

The dehumanization specialists

You've never heard everything, when it comes to autism advocacy. They'll always find a way to denigrate autistics even more, to make us more dreadful and scary and repugnant. They'll always find a way to put us in even more danger, should we make the appalling error of venturing out into society without our ABA therapists. Autism advocates specialize in dehumanizing autistics, and they're not done by a long shot.

This is the opening from today's Globe and Mail column by Margaret Wente:

It's hard for the rest of us to imagine what it's like to have a child with autism. Imagine a kid who has the Terrible Twos -- forever. A kid who screams for hours, bangs his head and doesn't sleep at night for weeks on end. A child who doesn't speak, is often inconsolable, who bites and hits other kids, and whose diaper you may still be changing when he's 10.

Then Ms Wente introduces one of the sources of this information, who is a leading Canadian autism advocate (and FEAT director):

"My son is in a mainstream class. He goes to other kids' birthday parties," says Jean Lewis. She is the mother of an autistic 12-year-old and also a director of a B.C. parents' lobby group. Where would her son be without treatment? "He wouldn't be living at home," she says. "Without treatment, kids like this are usually institutionalized by the time they're adolescents. They're living in restraints, living in diapers. They have to have their teeth removed because they bite."

Now the "choice" for autistics is either to undergo unlimited "medically necessary" ABA (no other kind will do), or to be institutionalized, to live in restraints and to have our teeth pulled. Maybe institutions have gotten to be old hat. Maybe the powers that be have become inured their daily bombardment of messages that autistics just naturally belong in institutions. So Ms Lewis, being an eminent autism advocate, had to make things a little more compelling.

In Ms Wente's column, Ms Lewis is describing the same autistic boy who Michael Lewis, her husband, promised to institutionalize "immediately" or "shortly thereafter" if ever his ABA program stops for any reason.

I'm pretty sure it's hard for Ms Wente and Ms Lewis to imagine what it's like, to wonder if you'll lose your freedom, again, because so many important people keep dehumanizing you and insisting you don't belong in families or society, but in institutions and in restraints. And then to wonder if, next time, they'll also pull your teeth. Because Ms Lewis says that's what we need. And Ms Wente reports this uncritically.

The end of Ms Wente's column reveals a further source of Ms Wente's information. That would be the Autism Speaks video, "Autism Every Day", which Ms Wente describes as "a glimpse of a day in the life of autism parents". She fails to see "Autism Every Day" as a glimpse at what autistic children have to endure, every day, when they are seen as appalling burdens, when they're talked around and shunted around as though they're non-sentient props. Ms Wente demonstrates that when you dehumanize autistics enough, as Ms Lewis so proficiently does, right down to pulling our teeth if we don't behave, then we disappear altogether, so that the only humans Ms Wente can perceive in "Autism Every Day" are the parents.


Anonymous said...

"Without treatment, kids like this are usually institutionalized by the time they're adolescents. They're living in restraints, living in diapers. They have to have their teeth removed because they bite."

Huh? I'd like somebody to tell me what percentage of adolescent autistic children end up living in diapers and restraints.

Where is the statistical evidence to back up such a bizarre claim? Especially consider that in California (according to DDS statistics) the vast majority of autistics live at home and suffer no severe behaviors.

Larry Arnold PhD FRSA said...

Sounds like something from the Borat school of journalism

Michelle Dawson said...

Anonimouse wrote: "Where is the statistical evidence to back up such a bizarre claim?"

Canada's leading autism advocates routinely disseminate information about autism that can't be traced to any credible source.

This reflects the low/no standards (of advocacy, science, ethics, reporting, etc) they think we just naturally deserve. Just like they're sure we just naturally deserve to be institutionalized, to live in restraints, and to have our teeth pulled. Evidence is beside the point. The point is to pursue the lowest possible standards.

abfh said...

That poor little boy, having to grow up with both his parents talking about what horrors they plan to inflict on him if he ever fails to meet their expectations.

Even Borat would have more decency than that.

Anonymous said...

This makes me feel physically sick; it's infuriating.

It's such a load of tripe and this woman just reports it uncritically!

I'm with Larry on the Borat comparison. Perhaps Ms Wente will come out soon and let us all know she's autistic herself, and the article was part of her master plan to expose the bigotry that surrounds autism/disability issues.
Kind of unlikely though...

Anonymous said...

If a serial killer on Death Row started biting his guards, no one would think of pulling his teeth, and no court would allow it because even the worst murderer has human rights.

As for innocent little children, if they want human rights in today's world, they'd just better not have a disability.

maitri said...

Real autism (aka "the truth") doesn't sell newspapers.

Anonymous said...

As someone who suspects he may be on the spectrum, and who works in a residential setting for developmentally disabled children (including many who are diagnosed with autism), I do feel like the media in general reports primarily on the more sensational autism-related stories. we hear constantly how the incidences of autism (or, more accurately, the incidences of diagnoses) is rising dramatically, with most articles hinting that the majority of these newly diagnosed people on the spectrum are severely touched by their neurodiverse tendencies. whatever, i know that sensation sells, so i'm annoyed but unmoved. however, the criticism of this article and the ideas it espouses shown here on this page does sort of turn a blind eye to the real and actual occurences of violent acts perpetrated by people diagnosed with autism.
I have no statistics to offer in terms of what percentage of autistic people are prone to violence, or how the rates of violent aggression among people on the spectrum compares with people assumed to be neurotypical. however, i do have a lot of experience with autistic children behaving violently, and i realize that many of these kids would be in juvenile detention centers if not for their diagnosis. If they behaved as some of them do as adults, they would be sent to a "corrections facility". As it is, I don't hold the actions of those i work with against them, and of course I fully realise that autism doesn't necessarily come with cognitive impairment or violent tendencies. However, sometimes it does, and when it does, being diagnosed as "autistic" can keep some kids out of places much scarier than my workplace. How do you lot propose that people who happen to be both autistic and violently aggressive(and, often, with serious injuries resulting) be dealt with by their families, and the larger community? I think the current model has some serious flaws, but I'm at a loss to think of a near-perfect solution.

Michelle Dawson said...

I've been officially judged to be violent, dangerous, a threat to others, etc. This judgement, which emerged shortly after my employer knew my diagnosis, has been sustained and defended (in writing) over the course of many years, including through legal proceedings, in the absence of any evidence to support it.

So I have some perspective in considering others' reports that autistics are just naturally violent, dangerous, a threat to others, etc.

Also see this post and the comments on this post.

As I point out in one of the comments, "autistics are routinely and persistently put in situations in which nonautistics would behave in unacceptable ways."

See also the dramatic, rapid and sustained effect of a placebo in addressing "aggressive challenging behaviour" in Tyrer et al. (2008).

Annique said...

In reply to anonimouse:

"Huh? I'd like somebody to tell me what percentage of adolescent autistic children end up living in diapers and restraints."

I know, right? That must be one of the most absurd claims I've ever read. None of my coworkers (all 20 of us are on the spectrum) as far as I know wear diapers or are physically restrained.

I myself am sitting in my jeans on a chair, so that's at least one without a diaper for whoever uttered that pile of bovine fecal matter.

But then again I'm not a 'real' autistic. No true Scotsman, right?