Will you, won’t you, will you, won’t you, will you join the dance?
So goes the refrain of Lewis Carroll’s “Lobster Quadrille,” from Alice in Wonderland.
I can’t tell you how often I ask myself this question.
Will you or won’t you join the dance? Will you join the bandwagon and wear a puzzle-piece lapel pin and light up your front porch blue every April to honor Autism Awareness Month? I’ve done both this year. I have also attended autism symposiums and information seminars. I’ve gone to our state capitol to lobby for funding for our local autism center. Last year, I had a lengthy phone conversation with one of Autism Speaks’ lead scientists. (Good news, guys: They do not to engage in embryonic stem cell research!) I’ve even initiated my Make Me Go Blue campaign to raise funds for autism research. Yes, I am willing to dye my hair blue for this cause!
So I clearly have joined the dance. When you get diagnoses like our kids have, you really have no choice. You know you need to increase awareness so that your kids can have as bright a future as possible. You know that awareness is key for understanding, and understanding is key for acceptance. And without acceptance, opportunities diminish. The more people get the ins and outs of ASD, the greater the chance that creative solutions will be found to the challenges that people on the spectrum face.
But there is another part of me that resists joining in the dance too vigorously. I may do a simple waltz or roundelay, but I will not do a flamenco for autism awareness. I will not join the autism Riverdance troupe.
A Whole Mess of Ugly.
Where do I draw the line? At my kids. I don’t want to turn them into poster children. I don’t want to garner pity for their situation, difficult though it is. I try to be careful about this because I don’t want them to see themselves only through the lens of ASD. I don’t want them to use their diagnoses as excuses for not trying hard enough or as a way to shift the blame when they get into trouble. So I try to separate out the advocacy stuff I do from the parenting work laid out before me.
My kids are going to have ASD for the rest of their lives. They will always find it harder than their neurotypical peers to navigate the rocky shoals of social interactions. Relationships will pose a huge challenge. They will have to learn how to cope with the pressure trying to appear “normal” even though they are so different. So the last thing I want to do is give them a way out. Life’s going to be hard for them, and the sooner they get to work figuring it out, the better off they’ll be.
My two oldest know that they’re on the spectrum, and we’ve had some very good conversations about what that means for them individually and in our family. But what I haven’t done yet is prepare them for the outside world’s reactions. They’re getting a bit of it at school, but the environment is still controlled to a large degree, and they both tend to be shy. But that’s not going to cut it when they’re out in the job market. Or thinking about starting their own family. Or when Katie and I are gone. They’re going to need a good foundation.
I keep thinking of Motormouth Maybelle in the musical Hairspray and her words of wisdom to a young mixed-race couple: “You’d better brace yourselves for a whole mess of ugly coming at you from a never-ending parade of stupid.” No matter how much we advocate for our kids, no matter how much awareness we raise, there will still be people who just don’t get it. We’re seeing that already in the kids’ schools—and not just from the general education teachers but even from some of those supposedly trained in special education! Just imagine what it will be like when they enter the broader world.
Part of the challenge is that our kids are high-functioning. They are verbal. They know how to look people in the eyes—even though they don’t typically do it. They are intelligent and, thank God, well-mannered. But they still have ASD. They still find life difficult. Despite their high IQs, they have learning glitches. Alex Plank, founder of the autism website Wrong Planet, once said that with low-functioning people, it’s hard to see the person because of the autism. But with the high-functioning, it’s hard to see the autism because of the person. But it is in there. It affects every aspect of their lives. And it can weigh heavily on them. They’re just really good at hiding it—until they’re in the safe environment of home or the pressure gets to be too much.
And so, because they can seem so typical, the risk of them being misunderstood is greater. The risk of them not being given the consideration or accommodations they will need in the workplace is higher. And the risk of potential friends and life partners not “getting” them is greater.
So rather than join in the dance too vigorously and inadvertently give my kids excuses, I try to stay understated. For their sake. Not because I think it’s not serious. And certainly not because I don’t care. But because I need them to be as strong as possible.
So yes, I will join in the Autism Quadrille—but only because I want my kids to be able to join in the broader in far more beautiful Dance of Life.