September 29, 2015

Whitewashing vs Neurodiversity? It doesn't have to be a choice.

With Steven Silberman's book NeuroTribes, and Amy Lutz's  recent article, "Please Stop Whitewashing Autism," the autism self-advocate vs. parent community fights seem to be picking up steam again. I don't plan to participate this time around.

But I have been wondering about something new. Science has shown that there are not one, but many genes likely to cause autism (Dozens of Genes Associated with Autism in New Research). It seems as if the science is beginning to suggest that there is no single autism, or even a single autism spectrum. There are many sub-types, and as we learn more about the brain and the genetics, we may find that many of the people we classify as "autistic" may actually have a different disorder. In other words, Steve Silberman and Moe may have nothing in common at all.

And when that happens, what will happen to all those self-advocates who claimed they were there for my son too? What happens when it turns out that they don't actually know any more than anyone else about what's going on in my child's brain?

For the record, I'm not against the self-advocate community. Their message is powerful and vital: "nothing about us without us." Stop infantilizing the disabled. People with disabilities must have a say in their own care. Independence. Dignity.

We must absolutely all rally around these tenets.

But we must also recognize that it's not always that easy. Moe can't tell me he has a headache, let alone advocate for his housing rights. At least not yet. And as long as medication is the only way we've found to keep him from hurting himself and others, we will make the choice to use that medication for him. Yes, we listen to his communication in every form, but his message isn't always clear.

Do I think autism is being whitewashed? I don't know. Maybe sometimes. I certainly don't believe that autism is a gift for Moe, nor that his brain just works a little differently. He is severely disabled. But his experience is no more or less valid than anyone else's.

Let's all share our stories. Let's learn from each other, help each other out when we can, and when we can't, get out of the way.


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