The New York Times reported last week that approximately ten percent of autistic children lose their diagnoses, but no one seems particularly happy about it.
Neurodiversity activists predictably slammed the definition of “optimal outcome” as “loss of diagnosis.” “Autism isn’t an illness in need of a cure,” Ari Ne’eman, the president of the Autistic Self Advocacy Network said in the Times piece, calling attempts to “rewire [the] brain” to make it less autistic “unethical.”
Parents of low-functioning kids were also bitter, but for different reasons. They wondered why well-intentioned friends and family members kept forwarding them links to the Times article, despite the fact that not one autistic child with intellectual disability recovered in either of the two studies referenced (in fact, one study only considered children with at least an average IQ, as if granting that those below were beyond hope). It was too heartbreaking for these parents to check their email or Facebook feeds during their brief breaks from divining the wants of their nonverbal children, managing their tantrums, sometimes changing their diapers, only to be faced with these naïve messages, often accompanied by encouraging emoticons.
I’ve already articulated my frustration with the neurodiversity movement’s persistent whitewashing of the profound disability suffered by tens of thousands of autistic individuals, so I won’t rehash that again. I’ll just add that self-advocates’ horror at attempts to “normalize” autistic children like the young people featured in the article is belied by the behaviors of the movement’s most successful members. I’ve attended government meetings and watched interviews with prominent self-advocates. No one is flapping his hands, wandering around the room, or using a picture board to communicate. These men, in fact, are all bright and articulate, with obvious competency at what researchers call “adaptive behaviors,” which include communication, daily living, socialization and motor skills. In other words, they themselves meet the criteria for what is called “very positive outcome” in one study and “optimal outcome” in the other – which is why their continued hostility towards parents who only want the same successful, independent lives for their own children continues to baffle me.
But for parents like me, parents of children unlikely to ever lose their diagnoses, these are the reasons I was happy to read the article and the studies it featured anyway: