Until recently, I admired the autism parent community from afar. Like the parents who awakened and changed the schizophrenia treatment world, parents of autistic children have moved both treatment and public opinion about the disorder almost 180 degrees from where it had been.
They did it fairly quickly, too: bringing autism from an obscure and stigmatized issue to a topic discussed openly in less than a generation.
I’ve watched with wonder as the autism world has developed and changed. While public knowledge, research funding, and public services aren’t adequate, they’ve come so far.
Along with increased visibility and power, however, conflict and controversy have followed. Passionate disagreement and painful divisions persist even as scientific progress is made. Those who should be allies remain at odds over issues like vaccination and whether autism is a disability or a ‘neurodifference.” The search for cause, effective intervention, and acceptance of people with autism and autism spectrum disorders have divided and splintered the advocates working so hard for the same purpose: improved lives.
I’m a parent advocate for what would seem to be an unrelated issue: eating disorders. So it has been with particular interest that I see the main drivers of the autism movement have been parents – just as it was with schizophrenia.
As has been recently reported, most notably in a recent article in Time Magazine, it may turn out that the autism world and the eating disorder world have more in common than both having once been blamed on parents. The symptoms of anorexia could very well be an alternate manifestation of autism: rigidity of focus – in this case on aspects of diet and body image, - difficulty interpreting the emotions of others, and becoming easily overwhelmed by emotions.
Although I see the potential for cross pollination – we may learn more about both autism and anorexia as we examine the relationship – I also see the potential for increased divisions. The eating disorder world is often resistant to biological “determinism,” and the autism world may not welcome bedfellows from another controversial and internally divided constituency.
Parent advocates from both autism and eating disorders may not care to take on the burdens of each other’s stigmatized positions – but I have confidence we eating disorder advocates have a great deal to learn from the autism world about advocacy, fierce parenting, and controversy.
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