I said good-bye to my kids this afternoon. As much as I’ll miss them while they’re with their dad this week, we all need the break from each other. Please don’t get me wrong: my kids are AWESOME. They’re honestly the best kids I could ever have hoped to have gotten in the kiddo lottery. They’re funnier than most adults I know, they’re artistic, and perceptive as hell. They also have autism. Asperger’s Syndrome, to be specific. This tends to magnify their awesomeness, but it also makes me a whole lot more tired. Times two.
So this week, you’d better believe I’m going to enjoy my time off. The very first thing I did was catch up on some TV I’d been meaning to watch (but always run out of energy to do). I tuned into Parenthood first. I’d seen the original film, but I hadn’t read any reviews. I tuned in with no expectations, and was pleasantly surprised: the show has a story arc involving an 8-year-old boy who is diagnosed with Asperger’s Syndrome.
I say pleasantly surprised because I’ve seen it before, done not nearly as well. Grey’s Anatomy in particular stands out as being laughably stereotypical, and Adam, while somewhat more personal, still deals with the surface of how people with Asperger’s really live, think, and see the world. I get why autism is hard to write without stereotypes and generalizations. Stereotypy is one of the diagnostic elements of the disorder, so it stands to reason that folks who don’t live with autism (or live with someone who lives with autism) might not get the fully nuanced picture of the person with autism.
I think Jason Katims might get it, though. A quick search tells me that he has a 13-year-old son with AS, which gives him a personal understanding of what it’s like to live with a child on the autism spectrum. Whether that will translate into Max’s character doing autism right remains to be seen, as the series is still very new, but Katims has definitely captured some of the parental response brilliantly. The denial, the need to jump into anything that might provide a “cure,” the hyper-organization skills… Stereotypes? Sure. But I’ve seen all of that repeated over time since joining the autism community 6 years ago this week. Parental reaction is just as much a spectrum as autism itself, and I think that Katims has so far captured that piece accurately.
There has been criticism that autism (and Asperger’s Syndrome in particular) has become the disease of the day. It’s cool to be quirky, and the media has picked up on this message. The critics go on to make assumptions about the sudden increase of diagnosis in the last ten years, claiming that what used to be identified as “poor parenting” and “quirky kids” is now being pathologized and popularized. Let me stand among those who state that while folks with autism are fabulous, there is nothing “cool” about struggling with communicating with others, with not being able to identify social cues, and with fighting the instinct to engage in socially inappropriate stereotypical behaviours in uncomfortable situations. It’s not “cool” to feel overwhelmed by a sudden change of temperature or an unannounced substitute teacher.
Given that the prevalence rate in Canada is roughly 1 in 165, it only makes sense that children, youth, and adults on the autism spectrum will be represented in popular culture. I just hope the portrayals continue to get more accurate. In this regard, 8-year-old Max is off to a good start.
EDIT TO ADD STUFF OF RELEVANCE
A reader suggested I provide something more tangible and personal to this entry. As I’ve posted previously, I find the line between describing my own experiences as a parent of children on the autism spectrum and respecting their privacy difficult to navigate. I hope the following gives you all just enough of the former without betraying the latter.
I had a kid, like Max, who would wear a pirate costume to school. First, it was a cape and wizard’s hat. Then the pirate costume. At almost 10, he still spins in circles to calm himself down in public. Max’s frustration with scissors in the first episode? We’ve got those same kinds of fine motor issues here. Even Max’s gait looks so familiar to me. And the Lego? Boy howdy, the Lego. He usually has at least three minifigs in his coat pocket at any given time. Oh, and did anyone notice the longer hair? 10 bucks says the character can’t cope with haircuts.
Then I have this other child, my perfectionist with perfect penmanship, incredible gross motor ability, and an astonishing capacity for extreme meltdown. The one who shows much more anxiety towards change and newness, the one who follows rules because they’re rules (like Max’s insistence that he play baseball because it’s his team, regardless of how he feels personally about his performance).
I see much of both of my very different children in this young actor’s eerily accurate portrayal. It’s hard for me to tell if I see myself in his parents, though. It’s been so long since my first was initially diagnosed that my memories are hazy. I do remember feeling relief that we finally knew what was up, and that everything suddenly made sense. I remember when I first started to reframe what I understood “independence” to mean, so that I could be the supportive parent my child needed to reach his dreams.
The devastation that some parents face upon diagnosis? That came with my daughter. Her diagnosis hit me like a truck. I did not see it coming (which is fascinating, after knowingly living with a child on the spectrum for years, and having worked in the autism field at the time of diagnosis). She’s much less stereotypical in her Asperger’s presentation, and I expect that she will live more or less the life she hopes to lead without needing too much additional support for the social and communication aspects of the disorder. If I’m honest with myself, the devastation I felt came from the realization that she could not be relied upon to take care of her brother when I’m not here anymore. Who puts that kind of responsibility on a 6.5-year-old? It wasn’t intentional, but yeah, I’ll admit to the expectation that she would be a major part of his support network. And now?