This is an entry for the Blogging from A to Z Challenge. The entire month of April (except for Sundays) I will be blogging through the alphabet on autism-related topics to celebrate Autism Acceptance Month. (Edited to add – I didn’t quite make it in April. I moved in May. I’m finishing the alphabet in June.)
Q is for Quiet Hands Getting Loud
Quiet Hands. If you’re Autistic, you are probably familiar with the phrase. It’s the admonition to stop fidgeting, stop flapping, stop moving, stop what’s called “stimming” — short for “self-stimulatory behaviors.”
But “quiet hands” is not autism acceptance. It is part of the goal of so many autism therapies: to make an Autistic person “indistinguishable from their peers.” People who try to accomplish this with Autistic people believe they’re doing them a favor because they think that if we can just figure out how to look at act like everyone else around us who isn’t Autistic, we will be “cured” and be able to have the same kind of “normal life” that other people have.
But when I look around at myself and my fellow adults Autistics and hear their stories, it seems to me that this “indistinguishable from peers” goal is one that only a tiny fraction of Autistic people are able to accomplish. Beyond the relative unattainability of “indistinguishable,” the stress of trying to reach that goal can do long-term damage to a person’s body and to their self-esteem.
The dirty truth about “quiet hands” and other attempts to train the autism out of us is that these sorts of therapies — teaching us to look others in the eye, stop fidgeting, stop rocking, stop doing anything that “looks too autistic” — is that these therapies are not really meant to help us. They are meant to make others feel more comfortable around us and to allow others to try to forget that we are Autistic.
Teaching us that we need to stop looking “too autistic” if we want to be treated with dignity and have a happy and productive life teaches us that who we are is wrong and ugly and unacceptable. And if we don’t succeed in looking “normal enough” we have been taught to try to hide our autism, so our boss, co-workers, classmates, etc. don’t understand why we are unusual. We are more likely to be bullied, shunned, and fired from our jobs if people don’t realize that there is nothing “weird” or wrong about us; we’re just Autistic. People are more likely to be willing to work alongside someone they know is Autistic than someone who is just “nebulously weird.” I lost jobs for being too strange, creepy, etc. when it wasn’t known that I am Autistic. Trying to teach Autistic people that the only route to success is to learn to fake being someone they aren’t is setting most of them up for failure.
And the stress is long-lasting and can lead to health and functioning difficulties down the road. An excellent essay by Mel Baggs talks about the breaking point that people can face later in life after too many years of struggling through the stress and difficulty of “faking normal.” In the section on burnout, Mel explains very clearly how years of “faking normal” can lead to a breakdown:
Burnout, long-term shutdown, or whatever you want to call it, happens generally when you have been doing much more than you should be doing. Most people have a level to which they are capable of functioning without burnout, a level to which they are capable of functioning for emergency purposes only, and a level to which they simply cannot function. In autistic people in current societies, that first level is much narrower. Simply functioning at a minimally acceptable level to non-autistic people or for survival, can push us into the zone that in a non-autistic person would be reserved for emergencies. Prolonged functioning in emergency mode can result in loss of skills and burnout.
With some diseases with long-term effects (and I am not suggesting that autism is a disease), it is the people who tried to ignore the long-term effects and “act normal” who often burn out, probably because they are drawing on emergency reserves to do so. There is a high chance that autistic people who attempt to ignore the fact that they are autistic and act like non-autistic people are subject to the same kind of burnout, or even autistic people who push themselves too hard in general without trying to look normal.
The danger here may be obvious: It may be the people most capable of passing for normal, the most obvious “success stories” in the eyes of non-autistic people (some of whom became so adept at passing that they were never considered autistic in the first place), who are the most likely to burn out the hardest and suddenly need to either act in very conspicuously autistic ways or die.
If that sounds overly dramatic to you, it means that you still don’t get it. You still don’t really understand what it means to have a whole industry of therapy centered around making people do and say pointless and unnatural things so that they can look and sound like everyone else. Is there something about you that is different? Would you appreciate being told that you should spend your life dying your hair to hide the beautiful ginger shade you were born with? Have you ever recoiled in horror after learning that right handedness was so valued that left-handed children used to suffer having the bones in their hand broken so that they had no choice but to become right handed? Surely there’s something about you that you have been pressured to hide and change? Dig into those memories to connect with what it means to be told that you were born wrong and need to spend the rest of your life pretending it wasn’t so.
Teaching Quiet Hands isn’t harmless. It teaches us that we are mistakes. It silences a big part of our voice. It seeks to shape our bodies in the image of some unrealistic ideal. And, for many of us, it reduces our ability to function.
I am a big fan of RPM, facilitated communication, typing or pointing at a letter board to communicate. I love to read the words of those who communicate with their hands. And one thing I have noticed many of those folks saying is that they can only communicate if they are allowed time to stim in between typing. Some flap their hands. Some twirl things like a special string. Some drop to the floor and roll back and forth. These kinds of motions — these very beautiful Autistic motions — help us to stay centered, to stay focused, to regulate huge emotions, to give needed input to nervous systems that do not function in the same way as most people around us.
When you force Autistic people to stop moving in the ways our bodies are made to move, you take away more than the appearances that are so uncomfortable for you to see. You very often clip our wings. You take away our ability to self-regulate. You might complain that we scream or cry too much but haven’t noticed that we scream and cry less when we are allowed to live our truth on all levels. You may complain about how we complete a task — or how we are unable to complete a task — but you haven’t noticed that we can do many things much better when we are able to do them in the ways that feel natural to us and when we are allowed to take those small breaks to do the things that make us feel better and more connected. We make sounds. We make faces. We move our loud hands. We move our bodies. We spin in circles, roll on the floor, sigh, stretch, wave our arms, fidget with jewelry. Whatever it is that we do, we don’t do it to annoy you. In some cases we can stop doing those things but the cost is too high for you to justify asking us to stop.
Our quiet hands get loud and if you believe in autism acceptance you need to embrace our loud hands and understand why it is that our bodies need to sing.