Every conversation about Autism Spectrum Disorder should come with a disclaimer. Hoo boy! This is a hot-button issue. I get it. Parenting Autistic kids is thankless and hard. Lifetime disorders are tough to accept. Social deficits lead to all kinds of assumptions and accusations from people on the outside. And, yeah, we really don’t have enough information to conclusively say what causes, contributes to, or counteracts the behaviors that meet diagnostic criteria for this one.*
I’m not an expert. I can read the DSM 5, just like anyone else, but I am not equipped to diagnose or answer sophisticated questions about Autism. I can read research, just like anyone else, so I know that there is a flood of information and misinformation swirling around out there, not unlike the Pacific Gyre. But let’s step away from all of that and talk about kids, man.
The Autistic kids I got to know were utterly charming. Oh sure, they could be volatile and easily over-stimulated, they rarely asked about me in a conversation, they struggled with hygiene, their resistance to change and their rigid views of the world could be boring and frustrating, and they caused accidental offense frequently. But, to be fair, that’s kids for you. I don’t need an 11-year-old to validate me or care about my interests. If you do, you might want to look into that.
When the spectrum kids would let me into their safe zone, when they actually connected with me at their odd, individual levels, I grew to adore them. They were interesting, especially if you identified their passions. They were funny and sweet and earnest, 100% no bull shit. They were guarded because their enthusiasm had gotten them in trouble so often, and they rarely knew why. And because I’m as distractible as I am, they actually came in handy on a number of occasions for remembering important details with shocking precision. Best of all, in the vast majority of cases, they had very loving and very tired families who were doing their best with all their might.
(Keep in mind, we’re talking about Level 1 and 2 Autism here, those high to moderate functioning kids who are capable of going to school and mostly tolerating structured social scenarios. My heart goes out to families who care for Autistic children requiring the highest levels of support, or kids with co-occurring intellectual disabilities. That is unimaginably difficult and you need more communal and emotional support than you currently have. I haven’t got a clue what your lives are like; nobody does outside your amazing community of fellow parents. Plug into those people, if you haven’t already. They will be your saving grace.)
When our clinicians made progress with patients on the Autism spectrum, the pay-offs were enormous. Teaching a kid how to self-soothe so that he could avoid a meltdown after math class made it possible for him to acquire an education to match his intellect. Teaching a 14-year-old how to tolerate showering and brushing her hair revealed a beautiful girl with an enchanting smile—a smile! Taking a sullen, sad boy in steel-clad emotional armor to a place where his parents had to teach him to hug them less frequently and with less enthusiasm actually saved his family. I particularly enjoyed having the opportunity to tell tired, wrung-out moms and dads who had faced too many censorious glances and judgmental comments about their kids’ behavior that they were doing an amazing job, because they were dammit!
Let’s talk about that disapproval for a minute. We all do it. We’re at church or a restaurant or the fifth grade orchestra recital and, once again, that rowdy kid with no volume control starts going off. “This is boring,” he shouts, because the inside voice and outside voice are the same when you have Autism. He wrestles to get away, to find some way to keep his frustration at bay, but there’s no release valve once you’ve read all the storybooks in mom’s huge bag of tricks. His clothes are uncomfortable, everyone is so close, and there’s no where to escape to. The tension builds and builds and builds, and then– yup, there it is, the kicking, screaming, biting, completely shocking tantrum from someone way too big to contain.
Although we’re all sitting there shifting in our seats, politely pretending that we weren’t just as uncomfortable or bored or clenching our social graces between our teeth, a stern and silent “what a brat!” wafts through the air like some kind of rank Scentsy. Don’t think those moms don’t smell it. Oh, they smell that stink, and how! They’ve been smelling it for most of that kid’s life.
Take it easy on yourself. We’re just human beings. We’re programmed at the genetic level to adhere to the strict social cues of our packs. When one of the wolves doesn’t acquiesce to the alpha, it’s unsettling at a visceral level. When we encounter people who don’t display the social cues that make sense out of our interactions, we interpret the meanings that are coded into us. “How rude!” It’s natural.
Autistic people have —well, let me defer to the experts on this one: “difficulty initiating social interactions… [They] may appear to have decreased interest in social interactions. [They] may be able to speak in full sentences and engage in communication, but [their] to- and-fro conversation with others fails, [their] attempts to make friends are odd and typically unsuccessful. [Their] symptoms cause clinically significant impairment in social, occupational, or other important areas of functioning.”** In other words, they don’t quite understand or acknowledge the law of the pack. The rest of the wolves just hate that.
Or in the words of Stephen Sondheim, “No one likes a kid with a social disease.”
But because we’re humans, we’re bigger than our reptilian minds. We have the ability to choose our responses and to side with empathy when the internal struggle starts up. We have the option to stand up, walk over to our neighbor and volunteer to sit with her other children so she can calm the little guy who’s melting down. We have the ability to be patient with the challenges that other people face. If we can’t do that, then we can definitely shut up and keep our opinions to ourselves. And, while it’s thoroughly enjoyable to talk to ingratiating people, we don’t really need that in every interaction, unless we have serious self-worth issues anyway. We can choose to find the charm in kids struggle to navigate our complex social maze.
Of all the patients who came in and out of treatment on my former unit, it was the ones with Autism that I found it hardest to part with. That might be because I know they aren’t thinking of me anymore the way I continue to think of them. They aren’t sloppy sentimentalists, which is actually kind of enviable. I wish them and their families the best of luck. They need it.
*It isn’t immunizations. We do know that.
**DSM 5 diagnostic criteria for Autism Spectrum Disorder
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