As another Autism Awareness Month begins, those of us who are parents of autistic children are wondering just how much more awareness the world needs. For more than 10 years, the debates have raged on Oprah and Dr. Oz, in books by Jenny McCarthy on one side and mainstream doctors on the other, in every major newspaper and magazine: What exactly is autism? Why is the rate increasing? What causes it? After all of the drama and tears, the charges and counter-charges, it's impossible to believe that there are people unaware of autism.
But what should we do about it? Ah, well, that's another question.
For three years after my son was diagnosed with autism in 2007, I directed Loving Lampposts: Living Autistic, a documentary that looks at how the world views autism today, when the condition is having its cultural moment. I spoke with autism experts like Simon Baron-Cohen, autistic adults like Stephen Shore, doctors like Kenneth Bock, who use unconventional methods to treat autism, and a wide variety of parents who respond to autism every day.
My conclusions may surprise you, especially if you've grown used to hearing autism described as a soul-stealing prison that plunges families into unending misery:
- Autism is not always, inevitably, or only a tragedy.
- There are autistic adults who lead meaningful lives both because of and despite their autism -- and it's not that hard to find them.
- Talking about vaccines is not the same thing as talking about autism.
I'd love to talk about points one and two because they are really what my movie is about. But I've used the word -- vaccines -- that can derail any discussion of autism, and I think I'd better address that first.
I've met parents who believe that vaccines caused their children's autism, and I don't doubt their sincerity. But the evidence against them is mounting. Dr. Andrew Wakefield's research into the MMR vaccine has been revealed to be fraudulent. Thimerosal, the mercury-based preservative that was in many childhood vaccinations, is largely gone from them and yet autism rates continue to rise. But with each piece of evidence, the goalposts move and there is a new theory of causation.
David Kirby, who kindly allowed me to film a speech he gave at NYU and who appears briefly in my film, made this point nicely in a recent article on The Huffington Post. Kirby suggests that belief in a vaccine-autism link is going up, not down, and he writes, "There is nothing that anyone can do or say -- not you, not me, not any scientist on earth -- until definitive proof of all the true causes of autism is found."
If Kirby is right here, then it's a sad day for science and public policy in this country. It seems obvious that we should be able to say what does not cause a condition even if we can't say what does cause it. Think about it: What if I told you that eating green apples causes autism? Can you tell me I'm wrong? Really? You don't know the true cause of every case of autism, do you?
Jenny McCarthy, who also appears in my film, wrote recently about Andrew Wakefield: "Dr. Wakefield did something I wish all doctors would do: he listened to parents and reported what they said." But most doctors have done this. The extensive and expensive research into a vaccine-autism link wouldn't have been done if parents hadn't raised so many concerns about vaccinations. The medical community heard those parents. McCarthy is not upset because there is no research, but rather because the research hasn't verified her own beliefs.
But there I go proving point three. In all my talk about vaccines, I haven't mentioned anything about the amazing autistic adults I've met, about the parents of autistic kids whose compassion and acceptance are reshaping the world for their children, or about a different way of looking at autism that better supports autistic people.
It's called neurodiversity and at its core is the belief that autism is both a disability and a difference. It suggests that we should help autistic people manage or change the behaviors that are truly harmful to them even as we recognize that doing so doesn't make them any less autistic. And it implies that the rise in autism diagnoses may not actually be a catastrophe, but is, at least partially, good news because it means that more people are getting the services they need.
Over the next three weeks, I'll share some of what I learned about neurodiversity and autism as I made Loving Lampposts. And I'll introduce some fascinating people.
We've got autism awareness, and it hasn't taken us that far. Let's see what acceptance can do.