Be the Change: How to Shift Autism into the Mainstream
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.
Caitlin Wray’s Be the Change: How to Shift Autism into the Mainstream appeared recently at The Thinking Person’s Guide to Autism. Caitlin blogs at Welcome to Normal, Population: 0.
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Guest on 08/12/10 in featured, Society | 7 Comments | Read More
Comments (7)
I love this article, except for one thing: It isn’t the parents who need to say it first. It’s autistic people. To say that parents should be at the forefront is to give power to one of the worst parts of the stigma of autism: that we autistic people cannot speak for ourselves. Of course, parents need to model behavior to stand up for a child who cannot yet communicate. But that is different from being at the forefront.
We need allies, but autistic people must take the lead, or nothing will change. This is true for any minority; the majority must cede power and then declare its support, or the marginalization remains. That is why I write under my own name and am “out” in my local community, despite the fact that it’s a small town and there are days that I’d like to go back in the closet. In the past year and half, I’ve taken the closet door off its hinges and thrown it away so that I can never go back there, because it isn’t just about me. It’s about all of us.
Hi Rachel, I agree with you. But I don’t think it’s an either/or situation. I don’t think it needs to be autistic people NOT parents at the forefront of the movement. I think it needs to be both. Without parents standing up and embracing Autism and rejecting the old positions of pity and disgrace, I think we will find it takes many MANY more generations before more Autistic people like yourself grow up to be confident, open and proud of their differences.
I would like to see that revolution happen in my son’s lifetime (he’s 7), and I don’t think that’s possible without appealing to parents first. It’s not autisic people who I hear perpetuating stereotypes about the ‘tragedy of autism’ on discussion boards, nor is it autistic people who I see posting topic after topic about “should we tell anyone he’s autistic” in online forums, and it’s not autistic people who volunteer themselves to be portrayed as a burden worse than death itself in Autism Speaks videos. It’s their parents.
I have complete confidence that the neurodiversity movement will succeed in the long run because it is driven by the strength and wisdom of autistic individuals. But I think the swiftness and strength with which the movement can shift Autism into the mainstream depends primarily on whether the current generation of autism parents will be strong enough and wise enough to see the importance of being on the frontlines.
Hi Caitlin,
I agree that parents need to be on the frontlines with us, no question, but even the most aware parents are being led by their children and other autistics to new ways of understanding, not the other way around. It is *not* only parents who can free their children from the stigma of autism, which is what the author says, although the attitude of the parent is critical. As clearly conscious, well-intentioned, and courageous as the author is, to say it is only the parents sidelines the larger autistic community of which their children are a part. One way or another, we are leading, and in the struggle for greater respect, it’s crucial that it be acknowledged.
An analogy: Parents of gay men and lesbians who support their children and are proud of their children are indispensible in the fight for civil rights (as are their other allies in the straight community), but to say that parents are at the forefront of the fight for full inclusion would be to disempower the very people struggling for full equality. Parents are not at the forefront, though they may be on the frontlines as allies.
To some extent I think it’s a question of demographics. Does the autistic population consist mainly of children, as some think it does, or is there a large group of closeted autistic adults? If it’s the latter, most of the social changes will likely result from that group coming out of the closet, but if it’s the former, parents will have more influence than they otherwise would.
There are an incredible number of autistic adults out there, many of whom don’t self identify or even realize that they’re autistic because they don’t fit the cultural stereotypes. I don’t think that there are any more autistic people these days than there ever were before; more are getting diagnosed, either as children or like me, in mid-life, and coming to see that we’re an incredibly varied group. The more I look around me, the more I see people who very clearly have spectrum traits but have never identified them as such. I have a friend in her 40s who just started reading my blog and is practically shouting “Eureka!” Given that the diagnostic criteria were developed by studying boys, an awful lot of girls and women have flown under the radar for ages.
One of the cultural blindnesses about autism is that autistic children somehow don’t grow up to be autistic adults. That means that those of us who grew up before there were diagnostic criteria are rendered invisible. But we’re starting to make ourselves known. The more we do, the more I hope other adults will come out of the closet and not let the stigma stop them from asserting who they are.
Sorry, Caitlin, I didn’t realize you were the author of the piece! I was in a rush yesterday, saw that it was posted by “Guest” and thought it was an anonymous piece of writing. Anyway…I just wanted you to know why I replied to you by calling you “the author” instead of addressing you directly. No offense meant.
No offense taken Rachel. In fact, there is a wacky glitch with my PC right now where I can’t even see my own comments (on any of the sites I participate in) so I can’t even tell when I’ve been able to respond or not. Hopefully this one shows up. I enjoyed our discussion!