Monday, August 9, 2010

Be the Change: How to Shift Autism into the Mainstream

Caitlin Wray

I have a neighbour who can’t say "autism."

Both of us having two young kids, we had a casual chat on the lawn the other day as neighbours often do, about the usual stuff. Except of course, the “usual stuff” for parents like us will strike others as highly unusual. It's hard to make small talk about our kids without autism finding its way into the conversation. It used to make me uncomfortable; it can be awkward to find succinct ways to weave such a complex situation into an informal chat. But I no longer let society's discomfort with autism deter me from talking about "it," because "it" is part of who my son is, and indeed has become part of who I am. If my neighbour gets to talk about her daughter's ballet class, then damn it all, I get to talk about my son's karate class -- and how it has helped him with the more challenging aspects of Aspergers.

I must have hit at least three occasions in our conversation where I tried to say "autism" but she saw it coming, and cut me off at every pass. She replaced it with “I see” -- where I said "I’ve been homeschooling because the school wasn't prepared to work with Simon’s au-," "I see, I see," she interjected hastily. She also replaced it with "oh yeah" as in "We don't feel Simon needs to be cured of his au-" "Oh yeah, yeah" she interrupted me nervously. Awkward silences and fidgeting ensued.

I’ve read many opinions on who should be told about your child's autism, and how you should tell them. I’ve seen a range of positions from experts, parents, and autists. The prevailing wisdom, including from many of the people I most admire, is that you should be choosy and cautious about who you tell, discreet in how you share the information, and that your child should have some level of control (some say all the control) over who is told. Generally, this position comes from a place of concern and respect for a child’s right to privacy.

This made good sense to me initially. It sounds just like the middle-of-the-road liberal approach I would normally embrace.

But I am finding myself, with each passing day, becoming more radical in my beliefs about the need for complete transparency with an autism diagnosis. The need for respect, awareness, acceptance, and pride. And I just can’t see our kids getting respect, awareness, acceptance, and pride from a society that can’t bring itself to say “autism.”

Recently, I was in a forum where a mother spoke of how she hoped she would never have to tell anyone her son was autistic. Like me, she felt her son may go on to be so high functioning that no one would ever need to know. And she didn’t want to tell people now, only to regret it later because an autism diagnosis is “not the sort of thing people forget.”

Doesn’t that phrase “not the sort of thing people forget” sound dirty? Wrong? Something so distasteful it will forever stain the memories of those who hear it? It’s in the same category as not telling people you’re an alcoholic because they may never see you drink, or not telling anyone you’re a pedophile because you’re not going to work with children.

I can’t abide that definition of autism, but I really do understand where she’s coming from. Recently I was torn about a decision involving my son’s old school buddies, and how they don't know he's autistic. I struggled with the question: do I really want them to? We don't want our children stigmatized by the label. We don’t want them to be crucified on a daily basis, or limited in their future, because of that word, "autism." None of us want those things for our children.

But here’s the thing: until enough of us stand up and say "my child is autistic" or "my child has autism" and say it wrapped in a context replete with love, respect, and adoration, and devoid of shame, sorrow, or fear -- until enough of us find the courage to be at the forefront of that movement, then we sentence our children -- all of our children -- to exactly that which we fear most: isolation, marginalization, stigma. We foster it with our own fear. We perpetuate the cycle because we are not courageous enough to break it.

Yes, the risks with transparency are real. By “outing” your child you risk a label that currently carries a ton of baggage. You may have more battles -- or you may have fewer. Your child may benefit from the services they receive -- or they may face ostracism from the stigma of the label that brings those services.

Nothing is certain except this one, unavoidable truth: society will only stop fearing autism when we do. It will only stop stigmatizing our children when we wield a sword of awareness against that stigma. How can we expect society to recognize and respect our children’s autistic differences when so many of us are still in the closet about them?

Every misunderstood, marginalized, oppressed group of people throughout history has faced this same challenge. Stereotypes, fear, and pity suffocated them, demoralized them. The reality is that nothing changes, until enough people join the rebellion. And for those at the forefront of the movement, they risk losing the security of their child’s relative neurological anonymity, in order to secure a better future for our children collectively.

Ultimately, society cannot free our children from a cage of stigma. Only we can do that. We need to reject the "don't ask, don't tell" approach and foster a movement that shifts autism into the mainstream. And the only real way to do that -- to achieve complete equality, complete awareness, and complete respect for our kids -- is to be brave enough to say “autism" without the slightest hint of regret in our voice. 

We need to say it first. We need to say it loud. We need to say it often.

It’s the only way.