So why is it that hard-core Neurodiversity (ND) advocates embrace the thoroughly-debunked and often abusive practice of Facilitated Communication (FC)?
Partly it comes from a desire to defend autism as a difference to celebrate rather than a disability to remediate. When the parent of a severely autistic, nonverbal child cites the serious challenges that autism can bring, hard-core ND advocates cite the leagues of “high support needs” autistic individuals who, via FC, “turn out” to be highly intelligent: individuals who, despite their apparent obliviousness to their surroundings, have somehow soaked up everything around them, including language and written texts, and who’ve long been longing to connect with others.
Then there’s the desire to fit autism into the “social model” of disability—as opposed to the more pathologizing “medical model.” This means arguing that autism, like deafness, is disabling only as a function of social norms and environmental/sensory factors. Even in what look like extremely severe cases, it’s purportedly just a matter of providing proper access: for example, a keyboard and a facilitative hand exerting pressure on a wrist, arm, or shoulder, or holding up the keyboard.
Finally, there are the widespread complaints that Neurodiversity advocates, as a group of highly articulate, social media-connected individuals who barely (if at all1) meet the diagnostic criteria for autism, can’t possibly speak for everyone on the autism spectrum. When people critique ND advocates in general, and the ND-run Autism Self Advocacy Network (ASAN) and Interagency Autism Coordinating Committee (IACC) in particular, for only speaking for the very mildest end of the spectrum, NDers point out that they and their fellow advocates, including ASAN’s Board, include people whose status as non-speaking and as “high support needs” place them at the opposite end of the spectrum. And how do these non-speaking people perform their advocacy? How else?–via facilitated typing.
I’ve come to learn that it’s disproportionately the American ND advocates who embrace Facilitated Communication: the Brits tell me they’re a more cynical bunch. I wonder whether our differing psychotherapeutic heritages are also at play. The premise underlying Facilitated Communication is the “locked in child”—a take on autism that harks back to Bruno Bettelheim and the Freudians. That group wielded much more influence in the U.S. than in Britain.
And its influence here, judging from the persistence and proliferation of FC, from therapy to feature films, from identity politics to prime time TV, is still very much with us. Autism as locked in syndrome is quite locked in.
What all this means as far as “neurodiversity” goes is that the ND movement is dominated by people who are barely (if at all1) on the autism spectrum. For, aside from those highly articulate and socially connected ND advocates who dominate social media with thousands of followers, and who hold leadership positions in organizations like ASAN and IACC, there are all the non-autistic facilitators of the various individuals who serve as ND’s tokens of “high needs” autism: facilitators who, willy-nilly, are silencing autistic voices and replacing them with their own.
- Many ND advocates weren’t diagnosed until adulthood–and in some cases were self-diagnosed. Professional diagnosis is based on survey questions and observational data, which those who are determined (for any number of reasons2) can easily game. Self-diagnosis, as far as I can tell, is typically based on online surveys and/or identification with autistic characters in TV shows (e.g., The Good Doctor). If you’re a small-talk-hating introvert with all-aborbing interests and sensory sensitivities, it’s easy to make the diagnostic leap. YouTube videos of some of these adult/self-diagnosed people often show none of the typical signs of autism that even the highest functioning of true autistics (e.g., Temple Grandin) exhibit: no unusual gestures or perseverative movements; no abnormal patterns of eye contact and intonation; no indications of canned or echolalic speech; no awkwardness or stilted speech or lack of fluency in conversational back and forth.
- Reasons include gaining an identity and a group affiliation; rationalizing current social challenges or past social traumas (the latter—think junior high and high school—being far more common and long-lasting than people may realize); getting in on the ND game (writing articles or giving talks about what it’s like to be autistic, or being paid as a ND consultant).