Monday, October 30, 2006

Instant institutionalization

It's a basic tenet of Canada's autism advocates that autistics just naturally belong in institutions, and can only stay out of institutions by undergoing "medically necessary" ABA starting very early in life. From the autism advocate "fact sheet" again, the one disseminated to all of Canada's political leaders,

Without treatment, autism is a lifelong affliction that results in 90% of afflicted individuals placed in institutions and residential facilities, facing an unfulfilling and bleak existence for both the individual and family members.

This has clearly caught on. Here is Senator Jim Munson, speaking about autistics in the Senate on May 11, 2006:

However, honourable senators, we need to act. Nine out of 10 children who do not receive the treatment they need are institutionalized.

The 90% institutionalization rate (even higher rates have been promoted) is a reflection of the values and goals of autism advocates and has no foundation in the existing science. It's a complete fabrication that I wrote about from many different angles here. I would challenge autism advocates to give me one reference (a primary source from peer-reviewed science, please) that supports this fictional figure, in any era, much less the current one.

But what happens to autistic children who, as autism advocates demand, undergo "medically necessary" ABA from an early age? Michael Lewis is a Director of Autism Society Canada and the President of Autism Society British Columbia. He has been involved in ABA litigation and is one of our leading autism advocates and promoters of "medically necessary" ABA for all autistics. His son was diagnosed autistic at age 3. From a 2005 media story, here's a description of Mr Lewis' son:

Now in grade five in a regular classroom, the boy is a busy 11-year-old. He bikes, skis, swims and even plays clarinet in his school orchestra. He's also, "an active participant in family life," says Mr Lewis, who also serves as the President of the Autism Society of British Columbia. "Whatever we do, he's part of it."

Mr Lewis credits all of this to his son's ABA program. However...

But if his son's treatment was stopped, Mr Lewis is convinced the child would need to be institutionalized, possibly immediately. "If not now, then shortly," he says.

So Mr Lewis' son has undergone "medically necessary" ABA for many years, and has, according to his father, acquired a lot of impressive skills in this program. But the moment this ABA program stops, Mr Lewis promises to put his son in an institution. The impressive skills don't seem to belong to the boy, but to the "medically necessary" ABA program on which he is totally dependent, and without which the impressive skills instantly vanish and he is instantly doomed. He goes straight from a regular classroom to a bleak existence (as they say) in an institution, immediately or shortly after his ABA program stops.

This seems to cast some doubt on the effectiveness of "medically necessary" ABA, but Mr Lewis has no such doubts. Instead, there's that certainty that autistics belong not in families or society but in institutions. Even autistics who are considered to have succeeded in ABA programs, who stay in them for years, aren't safe. The only way to be safe is to be normal. Or else.


Anonymous said...

Without treatment, autism is a lifelong affliction that results in 90% of afflicted individuals placed in institutions and residential facilities, facing an unfulfilling and bleak existence for both the individual and family members.

That is an outrageous fabrication. Any idea where it originally came from?

Michelle Dawson said...

Hi Joseph,

My wild guess is that it came from the Auton trial. A similar statement is in the main trial decision and is repeated in the appeal decision.

This means it came from someone's Auton testimony and/or submissions (affidavits, etc). In Auton, only a tiny fraction of the 5,000 pages of evidence consisted of anything from the peer-reviewed science.

Since neither side in Auton was interested in science or ethics, and both sides freely denigrated autistics as doomed burdens on society (etc, etc), and neither side had any use for accurate information about autistics--the 90% figure, whoever's testimony it came from, was never contested. So it's in our jurisprudence, and it gets quoted by our leaders as if it were absolute truth, even though it has no factual foundation. Someone made it up.

Anonymous said...

Wow, that 11 year old boy is in a difficult position.
His dad thinks that if his ABA is stopped, all those skills he has gained and all his learning and development will, what, reverse? Disappear?
It doesn't say much for the father's faith in the ABA as a useful, life-changing tool.
(I'd better start ringing round the institutions pronto too, my poor, deprived, autistic child has never done a single discreet trial- he's doomed!!)

Michelle Dawson said...

Hi Sharon, there are other similar statements from Canadian parents (along the lines of, if the ABA program stops, we'll have to put the kid in an institution). Then there are the Canadian legal cases where it's testified (and decided) that even diminishing a child's ABA program (after the child's been "succeeding" in ABA for years) causes "irreparable harm" to the child. So yeah, kids who've been "succeeding" in ABA for years have all kinds of threats hanging over their head, if their ABA program diminishes in any way or stops.

Anonymous said...

Why are you trying to hurt autistics and their parents. Do you not think that if their was a better way then ABA to improve their childrens lives that this is what these parents would do.Severely autistic children need aLL the help they can get. Parents like these have given freely 100 percent of themselves to help their child and others. You should be ashamed of yourself Michelle

Michelle Dawson said...

Anonymous wrote: "Severely autistic children need aLL the help they can get."

I don't see how demanding that these children be institutionalized helps them.

Also, I don't see how demanding that all standards of advocacy, science, and ethics--the standards that protect and benefit you, Anonymous--be scrapped in all discussions and decisions about autistics helps autistics (adults or children).

It's possible to demand services for autistics--whatever those services are--accurately, ethically, and respectfully. Unfortunately, autism advocates have not attempted this yet. Instead, they have denigrated and dehumanized autistics. And they have demanded that the high standards of science and ethics which they enjoy and which automatically protect and benefit themselves--are much, much too good for autistics and must be lowered or abandoned.

You, Anonymous, may believe that denigrating and dehumanizing autistics helps us. You may believe that basic standards of advocacy, science and ethics--the standards that protect and benefit you, Anonmyous--are bad for autistics.

But I see no evidence that denigration and dehumanization has ever helped any identifiable group of people. To the contrary, denigration and dehumanization have been universally harmful to all human beings.

Nor do I see any evidence that applying low or no standards of science and ethics to a group of human beings has ever been good for this group. To the contrary, it is the harm caused by low or no standards (the kind now being forcefully promoted for autistics, by autism advocates) which has resulted in standards being established and recognized as essential, so that further harm will be avoided or minimized.

Anonymous said...

In my experience behavioural techniques in autism are only useful in the context of "natural environments" and that within severe limits for they do not generalize well in time or place. Why then bother with this ABA if you have to apply it in a totally artificial one?.

Thanks Michelle from Spain. I am a sciemtist now doing some personal "research" for my son who being severely autistic is now at 20 excluded from his special unit and is to big to handle at home in order that I see what is better for him.

Anonymous said...

this makes me sad. But only for the poor misguided, and confused person who wrote it.