First, Do No Harm

Just as I thought I was losing steam on my autism blogs, along comes the latest controversy in the autism community. It involves this Public Service Announcement made by the Dan Marino Foundation and the Autism Self-Advocacy Network (ASAN).

The PSA is meant to show autism in a more positive light, featuring people on the high-functioning end of the spectrum (most notably ASAN founder Ari Ne'eman, an adult with Asperger’s Syndrome), proclaiming “Our lives are not tragedies.” 

Viewing the PSA as the mother of a child with high-functioning autism – and removed from any other feelings I have about the neurodiversity movement –  I felt a surge of agreement. Owen’s life isn’t tragic. We are full of hope for him. He can, as the PSA says, “speak for himself.”

The problem – and what a large part of the autism community is reacting to – is that this PSA does not give any consideration to those with autism who cannot speak for themselves. In fact, it portrays the more severe end of the autism spectrum as a myth.

Except there’s nothing mythical about children who are unable to speak, or who can’t perform basic tasks like getting dressed or feeding themselves. It’s no myth that some of these autistic individuals are unable to function independently. And not only do we not yet have a solution, we don’t even understand what’s causing it to begin with.

There is no single face of autism. Autism is the child banging his head against the wall in the corner, who has never spoken a word. Autism is also the child obsessively doodling in his notebook, speaking in lines from his favorite episode of Thomas the Tank Engine. Autism is also the child who can add five-digit numbers in his head, but struggles with answering open-ended questions.

Autism is so different for so many people that I have often questioned whether we are doing a disservice to all people with autism by classifying those who are “severely” autistic with the same disorder as those with high-functioning autism and Asperger’s Syndrome. I have, at times, felt guilty that my Owen could be taking resources away from kids who need them more. I have conversely been frustrated that the only dedicated educational programs for kids with autism focus solely on those affected severely. 

What Owen needs is a program dedicated to teaching kids with high-functioning autism in the manner in which their brains are wired to learn. Still, I understand why such a program isn’t a priority. It makes sense to me that with the limited autism resources available, we would focus them on the kids who need them most. I understand it, but I still want Owen to be given every opportunity to reach his full potential.

And that’s what I’m getting at: We’re dealing with different levels of need here…different perceptions of what the problem is. If you are an autistic individual who has little or no ability to communicate even your most basic needs, that’s a lot different than being an autistic individual whose biggest everyday challenge related to autism is that society doesn’t understand you. They are both problems, sure, but should those two people be fighting over the same pool of resources? I’m thinking not.

But can we advocate for autism research, for autism resources, for equal rights, for better educational programs and for a more informed society without tearing each other down? I’m thinking yes.

Autism is serious. While it's not life-threatening in the medical sense, it threatens quality of life. Even for my Owen, who is very high-functioning (and probably exceptional in some areas because of his autism), I already see how autism makes his life harder and I worry that it will rob him of certain joys. I cannot imagine the heartache of worrying that my son might never speak. 

I am proud of Owen. I don't ever want him to be ashamed of having autism and I don't want anyone putting limits on what he can achieve. 

But with a public that is already under-informed about this disorder, the last thing I think we need is a campaign that minimizes the impact of autism. That doesn't help any of us.