The first thing you see when you come to this website are the words “Autism Speaks. It’s time to listen.” And as the autism numbers continue to rise, there’s little doubt that we need to understand as much as we can about autism.
But who really speaks for autism? Parents, scientists, therapists, and even the occasional celebrity are well represented in the media conversation about autism. Ironically, the voices most often missing from these discussions are those of autistic people themselves. I made my documentary, Loving Lampposts: Living Autistic, partially to help bring those underrepresented autistic voices into the conversation.
When my son Sam was diagnosed with autism in March of 2007, my wife and I encountered numerous messages in the media that told us that autism was a tragedy and that Sam’s childhood had been lost. We didn’t feel that way. Yes, we were concerned about our son. But he was the same sweet child he had always been. It was just that his developmental issues now had a name. It was certainly no tragedy to be raising him.
Which is why we were so relieved to come across a philosophy called neurodiversity. The core belief of neurodiversity is that autism is both a disability and a difference. Neurodiversity suggests that autistic people view and react to the world differently than the non-autistic (or “neurotypical”) because of differences in their brains. It’s those brain differences that lead to the behaviors we associate with autism.
The neurodiversity movement recognizes that some aspects of autism can be disabling. But crucially, it points out that some “autistic behaviors” such as rocking, flapping, or spinning are essentially harmless. For example, Sam developed an obsession with lampposts and liked to spend hours visiting them in the park. Unusual? Yes. Harmful? No.
At least as interesting as the ideas of neurodiversity was the identity of the people advocating them. There were some parents of autistic children but there were also autistic adults. Autistic adults! In all the conversations about autism over the past ten years, adults have been nearly invisible. There’s a huge focus on autistic children (as there should be), but sometimes we seem to forget that these children will grow up. And now, suddenly, my wife and I had discovered a group of autistic adults who spoke about autism in a way completely different from the mainstream media view. I had to meet them.
And over the three years I spent making Loving Lampposts, I did. The people I met demonstrated the truth of the saying, “If you’ve met one autistic person, you’ve met one autistic person.” Some were non-verbal; some spoke. Some lived independently; some needed assistance with everyday tasks. Some were employed; some weren’t. But all of them were leading full, meaningful lives both in spite of and because of their autism.
For me, it was a revelation, and it helped reinforce the positive feelings I had when I first discovered neurodiversity. In particular, I came to understand that neurdiversity advocates don’t deny the challenges of autism; they simply argue that responding to those challenges by trying to “eliminate” autism is not ultimately helpful to autistic people.
It’s far more helpful to accept autism and help autistic people lead fulfilling lives as autistic people. The goal should not be to try to make normal people out of autistic people, but rather to help the autistic succeed in a world that’s not made for them.
There are many other stories in my film, including those of parents, autistic children, researchers, therapists, and activists. Unsurprisingly, not all of them agree with me about neurodiversity. After all, the autism community is not known for unanimity.
But I believe we have to give greater weight to what autistic people are telling us. We’ve so rarely heard them speak. It’s time to listen.