Controversy and Curious Case Histories in the Autism Community

Health and medicine explained.
Jan. 16 2013 1:16 PM

Is the Neurodiversity Movement Misrepresenting Autism?

The curious case histories of some of autism’s biggest celebrities.

(Continued from Page 1)

However, FC has been exhaustively studied since Douglas Biklen (the producer, incidentally, of Wretches and Jabberers) brought the technique to the United States from Australia in 1989. Dozens of controlled studies have confirmed that the products of FC reflect the (usually unconscious) movements of the facilitator, not authentic communication by the user. The very few studies that support FC are generally anecdotal or inconclusive; one of the most referenced reports, a 1996 study by Cardinal et al., actually found that success “only occurred with prolonged practice of the experimental task, and there were many inconsistencies in the responses, even after prolonged practice.” The case against FC is so strong that it has been rejected by the American Academy of Pediatrics, the American Association on Intellectual and Developmental Disabilities, and the American Psychological Association, among many, many other groups.

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. 

Since its inception, the movement has been lambasted by parents of lower-functioning autistic children for pursing what they consider to be an exclusionary agenda focused on civil rights, societal attitudes, and support. These advocates, such as Harry L. Doherty, who writes his Facing Autism Symptoms in New Brunswick blog about life with his autistic son, Conor, say that this “irrational” mission distracts and draws funding from research on medical treatments and possible cures. 

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But to counter these critiques, there is always Amanda Baggs to echo the popular neurodiversity argument that handicap is in the eye of the beholder: “I find it very interesting by the way that failure to learn your language is seen as a deficit, but failure to learn my language is seen as so natural,” she has written. Or there is Larry Bissonnette, who (through FC) proclaims, “We are one branch of many on a ... diverse and wonderful beauty tree.” Lower-functioning autistics, it seems, are on board with the movement after all. (Sue Rubin is a notable exception, in that her writings (through FC) reflect a strong desire for a cure, but she often pops up in these debates because of her apparent capabilities.)

Neurodiverse sentiments such as these by Baggs and Bissonnette carry a lot of weight, since the public accepts them as the genuine insights of people living with severe autism. They have contributed to a romanticization of mental illness that Judith Warner, author of We’ve Got Issues: Children and Parents in the Age of Medication, has called “dangerous” because it can keep parents from getting their children the help they need. Her point isn’t hypothetical. A 2010 case study written up in Virtual Mentor, the American Medical Association’s online journal of ethics, featured parents who refused all treatment for their autistic son because they were “members of the autism self-advocacy movement.” 

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’m not saying it’s impossible for nonverbal autistic individuals to communicate using a keyboard. YouTube videos show Carly Fleischmann and Tito Mukhopadhyay typing independently, although the lack of controlled investigation of their abilities, among other red flags, continues to concern skeptics. What I am saying is that a real autism rights movement would recognize that people are truly neurodiverse, with brains of very different levels of functioning, instead of implying that we are all the same, with “intact minds” that just need to be accessed. It would include the needs of the 20 percent of the autistic population that is nonverbal, the 50 percent that is intellectually disabled, and the 30 percent that suffers self-injurious and/or aggressive behavior. As Kolevzon points out, these populations have “tremendous overlap,” meaning that there are tens of thousands of individuals who are both nonverbal and intellectually delayed, with dangerous behaviors that, untreated, can prevent them from living at home, going to school, and participating in the community. “Entirely missing here,” Warner has written, “is the notion that there is a world of difference between unique personality traits that may be quirky, annoying, or charming, and actual signs of pathology. Or that the difference between personal style and pathology resides in pain, distress, and impairment.”

I’d like to believe that those who argue the neurodiversity position do so out of ignorance—and I don’t mean that as an insult. Amanda Baggs, Tracy Thresher, and others offer a sanitized version of low-functioning autism, which is all the public sees.  The kids with the unfortunate trifecta of autism, intellectual disability, and dangerous behaviors aren’t on TV singing with Katy Perry. They’re in one of the 11 inpatient hospital units in this country dedicated to this population (many with waiting lists months long), in residential treatment facilities, or barely managed at home behind closed doors.  It’s only once you’re thrust into this world—as I was, when Jonah broke a teacher’s nose when he was in kindergarten—that you see how many there are: kids who have blinded themselves or bruised and concussed their parents and siblings or who spend their days in highly restrictive equipment to keep them from doing so. These children will never write one blog or produce one video. Despite that—or rather, because of that—they couldn’t be more convincing. And any portrayal of autism that glosses over their profound disability closes the door on them all over again.