The high-pitched EEEE-eeee-EEEE-eeee behind me is soft and low and pulsing, stabbing at the already-aching back of my skull—right where my hairline meets my neck. I’m standing at the counter, trying to figure out why the hell my recipe calls for “2 tablespoons + 2 teaspoons” of gelatin. Is it because I’m supposed to use them in different parts of the recipe? Do I use 2 tablespoons in one bowl, mix in the rest later? I believe this jello is trying to trick me.
I need to heat, but not boil my 4 cups of juice, which I have thanks to my juicer that now needs to be scrubbed clean … and crap, the juice is boiling. Is it ruined? Did the recipe really mean don’t boil? I sigh and figure it doesn’t matter anyway, because I don’t have any more strawberries to make juice out of.
“Logan! Please stop making that noise!” I snap. “Why on earth are you doing that?”
“Because I like to,” Logan replies.
Instantly I feel ashamed. I know these noises make him happy. I know I don’t snap at my daughter when she caterwauls mangled lyrics to the theme song from “Sofia the First.” Her off-key noises make her just as happy as Logan’s squeaky ones make him. Really, there shouldn’t be any differences in who gets to squeak and who gets to sing.
But that noise, especially as I frantically blow on my juice to get it to stop boiling—there’s no getting around it: It’s irritating.
So even though I know better, I try to press on. “Why do you like to?” I ask Logan. “Why are those noises fun?”
“I don’t know…” he says, drifting into thought, or emotion, or defensive silence. I feel bad. Asking him that is like asking me to articulate why I like the color red. And I’m 34 – well aware of the fact that some things, like preferences and love and Bigfoot, the origins of the universe and autism, can’t be explained.
I know I should let the noises go. Especially this month, as April is Autism Awareness Month. Or Autism Acceptance Month. Or Action Month. Sometimes, even as the parent of an autistic child, I’m not sure what to say because April can seem like Annoying Semantics Month as much as anything else.
Autism Awareness was started to promote inclusion and quality of life for everyone on the spectrum. Sounds good. But soon a backlash to that movement started, called Autism Acceptance Month. This side argues that the idea of “awareness” is harmful to the autism community because autism isn’t something we should mourn but should celebrate.
Then, there’s yet another side that argues “acceptance” is much too passive—it indicates there’s no cause, no cure, no hope. “Action” and a solution are what we need! (Of course, this offends “acceptance” advocates because people on the spectrum are not broken and do not need “fixing.”)
Whew. I often feel caught in the middle of a political storm, even in the middle of my kitchen*. Do I accept Logan as he is or try to tone down his shrieking laughter so it doesn’t hurt everyone’s ears? Do I spend two hours fretting over sugar-free, dye-free gelatin so he can eat the same/not same snack as the other kids at daycare tomorrow? Or is that too much action and not enough awareness?
Awareness—acceptance—argh. Perhaps a better goal might be adaptation, on everyone’s part. I’m aware of my son’s many, many strengths and boundless love. But I’m also aware of society-at-large and its wariness of the “weird.” And while I accept my son and celebrate the different outlook he offers, I also accept that not everyone else will. The fact is Logan will have to learn to adapt. He’ll have to learn to not meltdown in school if he can’t use the first urinal in the bathroom. He’ll have to learn he can’t make the EEE-eeee-EEEE-eeeee EEEE-eeee-EEEE-eeee noise during group time at school.
Hopefully I can learn to adapt by allowing him to do it at the kitchen counter, jello headache or not.
And hopefully society can adapt, too, and learn to appreciate behavioral diversity. Hopefully enough people will realize there’s no real difference between singing, shrieking, squeaking—they’re all ways our kids express themselves. One way of communication shouldn’t be “right” while the others are “wrong.” Hopefully we can all adapt our expectations for how people are to behave and how they are to communicate and allow for a broader range of variations.
I’m not saying Logan or anyone should give up personality. But if Logan can adapt in minor ways to reach out to society, to learn to squeak at home and not at school the same way all kids learn to rough-house on the playground and not in church, and if society can adapt in minor ways to reach out to him and realize that some people find joy and comfort in different noises, that would be progress to me. Call it awareness, call it acceptance, call it action—in April or year-round—the words don’t matter as much as a tangible approach to understanding on all sides. So I slide my whole-food jello mess into the fridge, smile at my son, and hope for the best.
*But bitter schisms in the world of autism are nothing new. All the way back in the 1960s, experts argued over whether the root of autism was medical or psychoanalytical — even farther back, its two forefathers from the 1930s, Leo Kanner and Hans Asperger, disagreed whether they were even describing the same syndrome.