I love being a writer and musician, but there’s definitely a part of the arts for me that’s like “Can I just flap my hands and ball up my fists rather than banging on a drum? Can I just perseverate and be happily echolalic rather than learning repertoire or keeping a writing schedule?”

I’ve known for a while that I was using “acceptable stims” as a way of masking/passing – I wasn’t able to articulate (or was afraid to admit) what I was covering up, but I knew it was something. I didn’t have a full sensory diet. More like cupcakes and the occasional burrito. It was a stop gap.

I think about this a lot, both in relation to masking stims – as in, finding “socially acceptable” ways to stim, like tapping, drumming, flexing (I’m just stretching!), hair twirling, and so on, as well as in terms of how a lot of my tools and practices as a musician get in the way of self-regulating. Which in turn, makes it hard to make shit. Context shifting is a huge pain in the ass. It basically doesn’t work for me, I have to be in mode A (music) or mode B (software). Writing is better, because I can write drafts in a text editor, or by hand. I can hand-write parts as well, but it’s time consuming. Everything from music software to the instruments themselves messes me up. It’s frustrating. (Yes, I’m a trained musician, it’s not about that.)

There’s something almost ABA-like in the ways my stims got funneled into “acceptable things”. So much of what I “learned” from childhood onward was about suppressing them, or channeling them into something that was viewed as “productive”, like writing, music and drawing. When the stuffed animals (which were as some part of myself that I’m just now starting to get back) were taken away, and the light didn’t stay on all night any more, and stacking small stones became replaced with rosin and bow — something got lost, and in its place, a small corner of my mind held back something that almost feels like electrical current when it now finally flows through my arms and balled-up fists.

This is why I get a more than a little testy when people start playing “Well, you don’t have the *real* autism” games on people. Not only would I suggest getting a time machine and seeing what my shouty, stimmy, dinner-table-fleeing childhood was actually like – I’d also suggest being around for all the times when everything fell apart in adulthood and I was full-on melting down. When you’re done with that, I can walk you through my also-meltdown-laden pathway to getting reassessed this year.

I honestly fear for the autistic kids, teens and adults who have these sorts of parents lording over them, posting pictures of them to “show how autistic they are” (as if you could tell how someone’s neurology manifests from looking at a portrait photo) and wasting some portion of their day to climb into people’s mentions on social media and heckle them about how self-advocacy is somehow harmful, misleading and delusional, when that’s flatly not true.

If this is you? Let your child be a child, for fuck’s sake. I know you’re frightened for them, but don’t mourn for us, either. If that’s incomprehensible to you: you need autistic friends in your life.

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