My Autism Cannot Be Defined Solely As Some Sort Of Norms Mismatch
|Jan 19||Public post|| 2|
A MAJOR THREAD of autism advocacy is the social model of disability. There do seem to be many aspects of being autistic that are limiting not because of any inherent flaw, per se, but because of a mismatch between the wiring of an autistic brain and the social and cultural structures of the society in which that brain operates.
Trust me, however, when I say that neither the absolute rager of a meltdown I had this past week nor any I’ve had in the past were the result of an autism “best understood as a difference, disabled by society’s expectations and norms rather than any medical deficit”, as Bitesize Autism Research termed the conclusions of a recent paper.
(I can only see the abstract, but I note in passing that in it the author concludes only “that we have no decisive reason to think that being autistic, in and of itself, is at odds with either thriving or personhood” and then simply says that this conclusion “chimes with” the social model of disability.)
My meltdowns, I think, come in two varieties: ones caused by sheer cognitive and/or emotional load, and ones caused by what we could term “undifferentiated emotional time”.
The former is what happened this past week when I had to get sixteen bales of hay into a ten-by-eight shed already full of disorganized supplies before the rain came. The latter is what happened several months ago when I found myself screaming at a high school student who was feeding the goats through the fence.
When I verbally tore into that high school student, I was not responding to that individual person and that discrete instance of this happening.
Instead, I was responding to the entire four years of having to deal with people feeding the goats through the fence when they weren’t supposed to. The sheer force, the violence really, of my voice perhaps was proportional to the entire history of the potential threat to my animals, but it was not at all proportional to the specific instance before me. I called this “undifferentiated emotional time” because that’s what it feels like in retrospect: like four years of past incidents were happening again, all at once, along with the present moment.
(I’m reluctant to call this a tiny kind of PTSD, but it’s a small version of what I imagine PTSD sometimes must be like for people with real trauma.)
What happened this past week was different. I had to manage the delivery of sixteen bales of hay, including letting the truck in through the drive gate while also making sure none of the animals were approaching and getting themselves underwheel (or escaping through the gate), and then determine how to get it all into the storage shed alongside the disorganized mess of supplies already in there.
Without any help, all while facing the forecast of imminent rain.
You’ll find in writings by actually autistic people some discussion of how difficult just normal, every day chores can be, mostly due to executive function issues. In some sense, you can see this as that, plus an external deadline (the rain), plus it being not just a personal responsibility but something other people needed done as well, plus the usual weight of knowing that no one had been helping me try to organize what was already in the shed.
This all resulted in anger at the weather, anger at the goats starting to get underfoot, anger at unhelpful colleagues, and anger at the supplies in the shed that were in my way. All of which meant loud and frustrated chasing goats away from where I was working, and eventually me throwing items out of the shed one after another accompanied by large amounts of cursing.
In the middle of all this, I kept updating other members of our organization via Slack messages, partly because narrating a problem sometimes can help me navigate it and partly because maybe someone had a bright idea about how to solve it.
Instead what I got was someone irritatedly proclaiming that they were not going to deal with anything I left unfinished because by the time they’d get there it would be dark, and then the same person snapping, “Go vent somewhere else.”
Let me explain something here. It’s important.
Autistic meltdowns are not “venting”. An autistic meltdown is a brain in crisis and distress.
What someone should have said to me in that moment is, “I know you’re worried about the rain coming, but: stop, put everything down, and walk away. See if that helps you come back in awhile to finish.”
These are thoughts it’s literally impossible for me to have myself in the midst of a meltdown. They need to come from outside my head.
What you don’t do is snap at me that if I don’t get it done it’s not going to get done, or call what’s happening “venting”.
Without someone trying to crowbar into my brain the idea that it would be okay to walk away, even if it was with the hope that I later could return to finish, there were only two options before me, neither of which was I especially conscious of at the time). Either the work was going to get finished but wrapped in an epic meltdown which was only getting worse because I was not walking away, or the work was going to remain unfinished but I might be able to avoid spiraling any further downward in the meltdown.
(I finished the work, continued to meltdown, and then unceremoniously announced that I was walking away from the entire nonprofit for the rest of the month.)
Meltdowns are not tantrums thrown for attention or manipulation. They aren’t “venting”. They aren’t, I’m sorry-not-sorry, simply the result of society’s expectations and norms.
They are nearly-uncontrollable storms in my brain.
When it’s an “undifferentiated emotional time” storm, I often can tell myself to walk away. Sometimes, rarely, I can even tell myself to do that before the storm actually hits. When it’s a cognitive and/or emotional load storm, I need someone outside of myself to tell me not just to walk away but that’s it’s okay to do so.
Meltdowns are one the clearest indications to me that we cannot describe autism simply and purely using the social model.
Meltdowns are not external. They are internal. They come from within my own brain. They might be prompted by external stimuli but they are not prompted by social convention.
Meltdowns are a sign of disability. My meltdowns are part of my being autistic. My autism is a medical disability, not a social one.