Wednesday, January 23, 2013

Using Facilitated Communication to Slime Neurodiversity

Using Facilitated Communication to Slime Neurodiversity

by Landon Bryce,
January 16th 2013

I hate Slate.

I hate it because of its deliberately contrarian nature-- they appear willing to publish anything that opposes conventional wisdom in a way that can be made into an infuriating enough headline that people will click on it. They are famous for this-- the #slatepitch hashtag that mocks this tendency is still going strong after three years. Emily Bazelon writes about every case of bullying by explaining why the real injustice would be requiring the bully to pay any consequences (most recently it's Lance Armstrong). They publish some good stuff, but mostly it's smart people slumming and trying to be deliberately provocative for money.

This is a typical Slate headline:

Is the Neurodiversity Movement Misrepresenting Autism?

Amy S.F. Lutz has an autistic son with limited verbal expression. Her article is about facilitated communication and autistic self-advocates.

It made me sad.

I don't know what to think about facilitated communication, really. I wouldn't recommend it, but I don't dismiss people who use it. I'm agnostic. I've said what I have to say about in my review of the movie Wretches and Jabberers and in this extended piece.

I can imagine how hard it must be for someone like Lutz to see people who look like her son writing books:

Jonah was 4 years old when he started writing in chalk on our driveway without ever having been taught—although his phrases, like “FBI WARNING,” were admittedly less communicative than Carly Fleischmann’s complaint, “HELP TEETH HURT.” Despite that, I really believed, for many years, that Jonah would develop into the next Tito Mukhopadhyay, the Indian boy featured in Iversen’s Strange Son, who published several books of poetry despite autism so severe he was nonverbal; prone to constant, repetitive movements, or “stims”; and, not infrequently, disruptive, noncompliant, and even aggressive with his mother.

Now that Jonah is almost 14, I’ve come to accept that what he writes and says (he learned to speak in a rudimentary fashion when he was 5) pretty accurately reflects what he’s thinking: “No school,” “BIG orange juice,” “Mommy and Daddy leave and Jonah stays at Costco” (so he can ransack the bakery department). Not that we will ever stop pushing him, working to expand his limited communication and social skills, while trying to maintain control over the frequent and unpredictable rages that necessitated a 10-month hospitalization when he was only 9 years old—rages that made him pound his own face bloody before turning his aggression outward in attacks that left us scratched and bruised. But as far as an “intact mind”? If it means a level of articulation and abstract reasoning belied by everything Jonah says and does—well, I no longer pray for my son to be someone he’s not.

This is really complex stuff, and painful, but it's important.

Some autistic people appear to have intellectual challenges, but really they just have a hard time communicating their intelligence to us.

Some autistic people have intellectual challenges that go beyond difficulties with communication.

I don't know how you can possibly tell these people apart from the outside, but both exist, certainly.

But I have a hard time dismissing the minds of people with intellectual challenges. You don't have to be conventionally smart to have good ideas, just like you don't have to be conventionally attractive to be a good spouse.

So much pain, so much anger.

Lutz spreads unsubstantiated gossip about Amanda Baggs:

I exchanged emails with one of her old acquaintances. Although he confirmed that the statements he wrote online were accurate, he couldn’t say anything else: Baggs’ lawyer had contacted him and warned that such statements could result in legal action.

Then she uses the general doubts about FC to attack other, specific self-advocates.

Finally, we get to the political attack against all autistic people who dare to speak for ourselves:

Despite this overwhelming evidence, the cases discussed above have had a huge impact on the autism community, which has increasingly been divided between those who consider autism a disability and those who believe it is merely a different, not worse, way of thinking and interacting with the world. This latter position is espoused by the autism rights movement, also called the neurodiversity movement, which has evolved over the past two decades from an ad-hoc association of individuals with high-functioning autism or Asperger’s syndrome and their families into a powerful lobby led by organizations such as Autistic Self-Advocacy Network and Autism Network International. ANI’s founder, Jim Sinclair, wrote the famous 1993 essay “Don’t Mourn for Us,” which accused parents who long to cure their children’s autism of really hoping “that one day we will cease to be, and strangers you can love will move in behind our faces.” Today, neurodiversity activists sit on the Interagency Autism Coordinating Committee (which advises the National Institutes of Health on how to allocate its autism research budget) and the National Council on Disability.

See? You can't let autistic people on important things like boards! They're all fakes! They have a dangerous agenda of taking money away from the people who really need it-- the parents of very visibly disabled children-- and wasting it on selfish faker grown ups.

So says Alison Singer of the Autism Science Foundation:

On a political level, “neurodiversity advocates have definitely succeeded in implementing their agenda,” says Alison Singer, founder of Autism Science Foundation and a member of the Interagency Autism Coordinating Committee. “You can see it in the strategic plan [of IACC]—there are more studies focused on higher-functioning adults and the services they need, such as finding employment. But because we’re reallocating money, not increasing the budget, that means shifting funds away from the needs of lower-functioning children, who need treatments, for example, to help them control self-injurious behaviors.” And that shift may become more pronounced once the new edition of the Diagnostic and Statistical Manual of Mental Disorders is published in May. By eliminating the Asperger’s syndrome diagnosis, as the DSM-V is expected to do, and redirecting all those high-functioning individuals into the autism diagnosis, the overall percentage of low-functioning autistics will drop—making it even easier for the high-functioning lobby to shunt aside those who might technically share the same diagnosis but have completely different needs.

So what happens to neurodiversity if its lower-functioning supporters are discredited? The movement is exposed for what it is: a group of high-functioning individuals opposed to medical research that, as Singer puts it, “they don’t need, but my daughter does. If she were able to function at their level, I would consider her cured."

I will never understand why people give Alison Singer money.

Or why the Autism Science Foundation lets her talk in public.

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