December 20, 2004

The Autistic Liberation Front.

Some autism activists don't think in terms of curing a disease but celebrating difference.
A neurological condition that can render standard forms of communication like tone of voice, facial expression and even spoken language unnatural and difficult to master, autism has traditionally been seen as a shell from which a normal child might one day emerge. But some advocates contend that autism is an integral part of their identities, much more like a skin than a shell, and not one they care to shed.

The effort to cure autism, they say, is not like curing cancer, but like the efforts of a previous age to cure left-handedness...

On e-mail lists frequented by autistics, some parents are derided as "curebies" and portrayed as slaves to conformity, so anxious for their children to appear normal that they cannot respect their way of communicating.

I note that the cost of treating autism is high, and that ought to create a lot of momentum for people who argue that treatment is not desirable. But there is a big difference in interest between "high-functioning" autistics and other autistics. If the high-functioning autistics win support for the idea that they should be appreciated for their distinctive differences and that treatment is oppressive and abusive, won't that tend to undermine the availability of treatment for those who are not high-functioning? You can see why those who care about non-high-functioning autistics are afraid of the acceptance movement.

Reading to the end of the article after drafting that last paragraph, I realize that, although I tried to present both sides of the extremely complex problem, I leaned towared the liberationists by writing "autistics" and not "persons with autism." Those who want the condition treated see it as separate from the person, something they hope to remove. Those who do not say things like "describe me as 'an autistic' or 'an autistic person,' versus the 'person with...' ... Just like you would feel odd if people said you were a 'person with femaleness.' "

UPDATE: An emailer provides some very helpful insight:
Thanks for pointing out the article. Unfortunately I am rather familiar with Asperger's, as three of my children have it.

I think they are using misleading language when they speak of disease and cure. Aspergers people are essentially emotion-blind. This makes interacting with others fraught with misunderstandings, and is a substantial handicap in dealing with other people. Imagine trying to get the day's work directives from your boss when the small-talk and the assignment seem of equal importance. As far as I know there is no "cure" to give them the neurotypical understanding of body language or voice tone. But we've found that the didactic approach seems to help them figure out "what to do next."

Teaching a child protocols sometimes helps: if the other person does X, you can say Y or Z. Some people have had success teaching children how to recognize facial expressions. I'm trying to drum up interest in experimenting with using acting coaches to teach about body language.

None of these are "cures" and none deal with the various quirks that come with the Aspergers package. Quirks don't matter so much, provided you can communicate without misunderstanding. We can easily make a place in our lives for someone with an intense fascination with doorknobs; which I suppose is what they mean by acceptance. But I very much want my own children to be able to figure out when you can joke with a policeman and when you cannot.

Unfortunately the intensive training you need is exceedingly expensive, and some things work with one kid and not with another.

ANOTHER UPDATE: The day after running the above-linked article, the NYT runs a long article about the difficulties of getting insurance companies to pay for the very expensive treatment:
Insurers have long raised objections about the very nature of autism treatment. Edward Jones, a senior official of PacifiCare Behavioral Health and chairman of the American Managed Behavioral Health Association, an insurance industry group, asked, "Is this really an educational service or a therapeutic service?"

A diagnosis for autism is included in the Diagnostic and Statistical Manual of Mental Disorders published by the American Psychiatric Association. Treatment of some kind for most disorders in the manual is covered by health plans.

According to Mr. Jones, though, "most people feel it is a biological, neurological disorder, but that cannot be proven." He added that "we don't seem to have any biological treatment for autism."


calebmom said...

I have to agree that the autistic person should be celebrated for their individualism. I have a 5 yr old son whom I let be himself. This however, does not leave me to remain lazy that I do not teach him everyday.
I have found great sucess with limiting his casin and glutens and I have introdruced to his diet, glyconutrients, Ambrotose by Mannatech. Caleb has seemed to come alive and aware. His speech has improved and when he communicates, he makes sure that you are looking him in the eyes when he is telling you something.
It is a blessing to us. I recommend you research this product. We are going to find a doctor for chelation next.
Elizabeth Morse
Puyallup WA

Rob said...
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Justin Cunneen said...
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Dell Adams said...

If the high-functioning autistics win support for the idea that they should be appreciated for their distinctive differences and that treatment is oppressive and abusive, won't that tend to undermine the availability of treatment for those who are not high-functioning?

First of all, if the treatment is oppressive and abusive, it doesn't matter.

Secondly, many of the most prominent autistic activists, notwithstanding their eloquence in print, are not "high-functioning" in any way in which that phrase is usually meant, as a look at the essay quoted in the New York Times piece should make clear. See also generally Ballastexistenz.

Paul said...

I want to use this medium to praise the effort and concern of all those involved in the research for prevention and treatment of all spectrum of Autism. As a father of two sons with Autism I am always hopeful when I hear about new breakthroughs in this area, just like the war against cancer and AIDS we must wage an even tougher battle against Autism.

Paul said...

As a father of two sons (4yrs & 6yrs), I am always delighted to learn about new breakthroughs in the prevention and treatment of various Autism spectrum and I will like to use this medium to express my profound gratitude and praise to all those wonderful people out there who have dedicated their lives and energy towards research in this vague area of medicine.

BlueNight said...

I notice you mentioned treatment. Some people think autism can be treated by an almost animal level of physical discipline; look up "aversive" behavior modification for autism if you want to lose your lunch.

As a person with Asperger's, the only thing that helped me was theoretical knowledge. Learning (through book learning) about the pack structures and pack dynamics of wolves suddenly made all those neurotypical behaviors make sense.

Guy at work who plays mind games? He's fearful about his place in the pack, knows he's not the boss, and doesn't want to end up on the bottom.

Teacher thinks I'm lying about something someone else did? Well, that's because I didn't look him in the eye when I said it, and since he took it as a threat to his authority, he also took it as a sign of weakness, and therefore lying.

The autism spectrum is a buffet line of individual symptoms. Rocking? Sure, why not. Late language? Of course. Complete lack of social understanding? That's the main course. Obsession on some specific logical thing? No thanks, I'm on a diet.

Some people have all of them, some people have two or three. Some are eccentric, some disabled, some straddle the line. It would be as if half the left-handed people were also unable to make the "L" sound with their mouths, or if 30% of the red-haired people were allergic to ketchup.

I would love to make certain autistic traits "go away", the ones that actually make a person suffer (sensory oversensitivity to the point of pain being my main example). But as I read more and more from people with more traits, my list gets shorter and shorter, as I realize how little of the suffering is from the traits, and how much of the suffering comes from people who say "well, that's different" with a frown or a sneer.

Paul said...

It is evident that autism can be cured, although this treatment can be very expensive, it is worth it. But the problem mainly is the lack of regulation and control in this is area of medicine. One would expect to find the same level of control and trial test that exist in other fields of medicine when dealing with autism.

Obviously, autism is as a result of a deformity in the brain, hence the lack of speech for example, but just like everything else in life, if properly managed, one can be able to harness other qualities of a person with autism, hence enabling these individuals focus on areas in life were such attributes are needed.

Anonymous said...

Paul, I don't think you understand what kind of a scale us high functioning autistics are on. The subtlety of the condition, its innate nature, is like being gay or male or female. Its a deep thing.

Can it really be cured? I think you will find your paragraphs contradict themselves.

Becky Driscoll Olson said...

To say that it is only "high-functioning" Autistics who want to be considered fully complete autistic people, and not broken Neurotypical people is highly untrue. Many of the de-facto leaders of the Autistic rights movement are "low-functioning," which often means that they are non-verbal. In fact, while "high" and "low" functioning are labels that are so context-based as to be pointless, the "lower" functioning a person is, the greater the likelyhood that they have experienced the truly dark side of the curbie-movement; ABA, mental institution, etc.
The results of "treatment" for autism are there to make NTs feel better, so that they can make it seem to the world that their child is "normal." They place a greater value on how an autistic child (or adult) looks than on how they feel, and treat autistic people like eternal children. A Neutotypical parent of an autistic child is considered by most to be a greater "authority" than is an autistic person. Organizations like Autism Speaks try to block out autistic voices, saying that they can speak for us, and then tell people that we have had our souls stolen away. Just because you can't see us doesn't mean we aren't here.