On Stimming and why “quiet hands”ing an Autistic person is wrong

Trigger warnings for ableism, abusive therapy, prevention of communication, and self injurious behavior (at the very end)

I will never understand how people can justify the use of “quiet hands”. If you are unaware of what this phrase means, or of the implications for autistic people, you need to read Quiet Hands by Julia Bascom.

When a parent, sibling, educator, therapist, medical professional, etc justifies the use of quiet hands, it baffles me. Do they understand what stimming is? Do they realize that my hands are the key to helping me see the world? Or do they just see my movements as separate from me, as a source of embarrassment for them? I tend to think it’s the latter, that it’s because stimming draws unwanted attention that people want to quiet my hands in the first place. They don’t understand the point of stimming, or I think (hope) they wouldn’t try and prevent it.

I could potentially go on and on about how my hands help me connect to a world that is often baffling to me, but I prefer to keep this explanation short and simple. Stimming is communication. Did you get that? Let me say it again, until it sinks in. Stimming is communication.

I recall reading, around the time I began to learn ASL, about D/deaf individuals who were forced into becoming oral, who weren’t allowed to use sign language. I would say ASL rather than sign language, but I’m not all that certain that the practice was US-centric. I recall being horrified, but not being surprised, because boy, did that sound familiar.

I was lucky (?) enough to have not received my autism diagnosis in childhood. I was 30 when the diagnosis was confirmed (though a professional suggested it at age 28). This meant that like many of my peers, I was treated as though any issue I had, any difficulties were a result of laziness or stubborness, not because the world was difficult to live in. I was lucky to avoid ABA and most other therapy, but that didn’t save me from well-meaning teachers and relatives who stilled my fingers, my legs, my body, sometimes even physically restraining me during a meltdown (though they thought of them as “tantrums”). These weren’t bad people. I won’t excuse their behavior, but there was far less known about autism at the time, and I doubt the treatment I received would have changed if I had been diagnosed at age 4, 9, 16, whatever. It probably would have been worse. They focused more on me when they felt I was drawing too much attention – to them, to myself.

I don’t recall being publicly shamed for stimming until I was a teenager. It was on a road trip with my high school choral group, and we had just performed for a church service (did I mention we were a private Christian school?). Afterward, we were seated onstage. I couldn’t look at the minister because of the overhead lights, so I focused on my fingers. I rocked and flapped a bit. I didn’t even notice I was doing it until afterward, when my choral director pulled me aside and scolded me, telling me I was “disrespectful” and “an embarrassment” to my school. I prayed that the ground would swallow me up, and I spent the night in my hotel room crying and feeling ashamed. And for what? For finding a way to deal with my overstimulation? For failing to live up to NT standards?

So this is what happens when you “quiet hands” us. It’s the equivalent to duct taping an NT person’s mouth shut or preventing a nonspeaking D/deaf person from signing. You are taking away our natural language. You make interacting with the world that much harder.

Sincere thank you to Brenda Rothman @ Mama Be Good for the inspiration to write this.

Final note: Please understand that this is not talking about self injurious behavior and redirecting that. I used to repeatedly bang my head against the wall until I discovered shaking it rapidly side to side worked just as well, providing the same effect. Investigate the cause of SIB and work to redirect to keep your kids safe. But don’t hold them down.

We are not all on the same side

I’m going to apologize ahead of time, because I know this is probably going to sound disjointed. I hope it make sense in the end.

Also, quick definition time. Allistic = not autistic. Please don’t confuse this with neurotypical/NT, which means non-neurodivergent at all. Some common neurodivergences that aren’t autism are depression, bipolar, ADHD, borderline personality disorder. If it’s in the DSM, it’s probably a neurodivergence. Allistic is specific to the autism community and is an easy way to say not autistic.

I have been an active part of the autism community online for four years if you count my time as a parent, and about a year and a half if you count my time as an autistic person. I keep hearing a few phrases that bother me, and I need to explore them here. They are the following:

“We all want the same things”, “we are on the same side”, “we all want what’s best for our kids” and “but my kid isn’t like you.”

If you say any of these phrases as a way to assert your role as a parent of an autistic person as equally important as an autistic person, well, to put it mildly, this raises my hackles.

“We all want the same things” makes me believe that you don’t listen to autistics often, even if you interact with us. Also, we do not all want the same things. Even among autistic people, there is a difference. But saying parents want the same thing as autistic people is ridiculous. Many parents want a cure. Many parents want easier ways to deal with us, to make their lives easier. Many parents want us to behave in a less autistic way. Many parents want to forever infantilize autistic people through guardianship and institutionalizing. Not some, not most, not all. But many.

“We all want what’s best for our kids” is something I hear a lot. That is a matter of perspective, because what an allistic parent wants for their kids may not be what’s best. There are all sorts of ideas about what is important for an autistic child, but rarely do parents consult autistic adults. Instead, they talk to teachers and therapists and pediatricians. Where are autistic voices in that?

Another thing I’ve seen is “this infighting is terrible!” It isn’t infighting when allistics fight against autistics. While not the same form of oppression, it is like a parent of an LGBT+ person claiming they have as much of a voice in the LGBT+ community as the LGBT+ person themselves. In what other group besides developmentally disabled people is this acceptable? It is infighting when autistic people fight against each other. And it is terrible when an autistic person is telling you how they feel about x, y, z autism topic and you shut them down, and “not my child” them. It is demeaning for you to shut down the argument of an adult autistic because you assume they are “too high functioning” to count or that your child could never be like that. What you see when you interact with me online is very different from what you’d see if you spoke with me in person. In addition, I will be turning 32 early this year. I am a much different person than I was at 7, 17, and even 27. I have grown up, and I’ve adapted.

Not every person you encounter who is on the spectrum will resemble your child. This is, in part, specifically if your child is nonverbal, you will see autism through your eyes, not theirs. If your child were to encounter someone who is autistic, yes, even an adult, they may see “wow, this person is like me, and maybe because they exist and they’ve been through what I have, I might be able to do those things, too.” Despite your protestations to the contrary, they may see a bit of themselves in me. You never know.

I may not be like your child. I do not neatly fit into your low or high functioning categories, nor into many of your other stereotypes regarding autistic people (which seem to change by the hour, the more is understood about autism). Your ideas about who I am is based on your own idea of autism. I’ve had people diminish my struggles and say they didn’t think I was really autistic (because I’m not Rain Man, I guess?) until I was slamming my palms over my ears, rocking and crying because someone decided to play a maraca next to my ear. And even then, they didn’t immediately think “autism” when that happened.

I’ve never read a story about someone like me, except through the blogs of other autistic people. Even those books that address people who are like me tend to forget that LGBT+ autistics exist, that POC autistics exist, that intellectually disabled autistics exist, and so do gifted autistics. There are autistics who always look autistic, and those who can pass for allistic/NT. I fall somewhere in the middle, where people see me as odd/weird, but because their ideas about autism are skewed, they don’t think “autistic” until after I tell them, and maybe not even then.

The point is, we are all different. Assuming we must all fit some ever changing stereotype of what it is to
be considered “autistic enough” to comment on autism-related topics and if we aren’t (according to outsiders), then it’s acceptable for parents to speak over us, to tell us we don’t count is ridiculous, insulting and invalidating.