Editor’s Note: I wrote this blog post back in February, tucked it away, and never posted it publicly. I was reminded of it recently while reading my friend Damon’s recent post about his experiences with apraxia. I’m posting it now as both a statement of solidarity to my nonspeaking friends and to encourage fellow neurodiversity advocates to keep motor challenges as much a part of the conversation as other neurological differences.
The advocacy niche that decided to adopt me is extremely specific, but I feel like I fit there. I am part ally and part insider, an autistic with fluent speech among nonspeaking advocates. This niche is theirs, but they have kindly invited me in.
I recently drafted a blog post about the responsibilities of being an ally to nonspeakers. I fussed about the words I was using often. I never want to sound like I’m centring myself in a movement that is meant to centre others. I think I’m doing okay, but then I worry that posts like this one might toe the line too much…
…but it’s impossible to not talk about my neurosiblings. There’s something essential that we share, and our unfortunate communication barrier has kept us from exploring it together. And I know that, because my experiences intersect with nonspeaking autistics just as they intersect with speaking autistics. I feel the same connection of “me too!” when I read their work.
That has led me to think more critically about the parts that we don’t seem to share, and it turns out that much seem to only be different on the surface.
One of the core struggles for nonspeaking autistic people deals with motor planning. I’ve read many nonspeakers referring to this as a “brain-body disconnect.” Essentially, the body doesn’t reliably follow instructions from the brain. I don’t think I experience a disconnect… but I do experience what could be characterized as blips? Or brownouts?
It feels like I’ve stopped knowing what to do in the middle of doing it. I’ll be walking, and if I’m not paying attention to what I’m doing (like if I’m talking to someone else), my ankle will roll, I won’t pick my foot up high enough, or I’ll just step down the wrong way.
When walking around indoors, I am likely to bang into counters, tables, and doorways. Sometimes I just lose my balance a bit and sometimes I just didn’t walk straight for some reason.
I move faster than I mean to. I throw things out of my hands by accident because my grip isn’t tight enough. I spill things. And I am indeed that person who has dropped their phone on their face while in bed. Many times.
I am able to speak, but I have a lisp. (My tongue is in the “wrong” place when I pronounce the “s” sound.) I tumble over words, and I don’t have enough time to think about what I want to say. If I am speaking, it’s harder to do literally anything else. It’s an energy drain. I relate in that sense.
I become unable to speak, but only temporarily. What it feels like when I can’t speak depends on the context. When I am just waking up or just falling asleep, it is hard to speak. I feel like my face is heavy and my jaw is locked. I don’t want to move, either, because being completely still is currently perfect.
When I’m having a meltdown, I can’t stop crying. I hated being told to “use your words” as a child in distress, because it only deepened whatever frustration I was feeling in that moment. I was able to think them, but they wouldn’t come out of my mouth.
I have had many situations where my emotions have shut me down completely, where someone might be asking me what’s wrong, and I want to say something. My brain screams words, but nothing happens.
There is a narrative thrown about that non- and minimally speaking autists are fundamentally different from speaking autists, but I find that the more I understand their experiences, the more I understand my own.
The fact that we are all so likely to have a relative with autism if we are autistic ourselves means something. Speaking autistics regularly have nonspeaking children, siblings, and other relatives. We may seem different to outsiders, but there is no separating us. Our similarities are obviously from the same genes.
Where else do our similarities lie?