This is an entry for the Blogging from A to Z Challenge. I didn’t quite make it in April. I moved in May. I’m finishing the alphabet in June.
The ABCs of Autism Acceptance series has been picked up by Autonomous Press and will be published in book form, with additional material, in June 2016. Watch for it!
T is for Toe-walking, Trauma, and Truth-telling
This is not quite the grab-bag of topics it might appear at first. There are connections among these three things.
Toe-walking is a very common trait among those with developmental disabilities, particularly autism. While walking around on tip-toes all or most of the time can also indicate other conditions such as cerebral palsy or congenitally tight Achilles tendons, it’s become associated most with autism. All children walk on tip toes sometimes. Most children stop doing it much or at all somewhere between the ages of 2 and 5. Autistic children tend to keep toe-walking a lot. Plenty of adults still toe-walk and I used to be one of them, but I trained myself to stop doing it over the course of the last ten years because I am trying to cope with the physical damage caused by 40 years of toe-walking.
Toe walking has always seemed natural to me. I remember being reprimanded often in my pre-teen years whenever I was seen toe-walking. I honestly tried to stop doing it, but as soon as my attention wandered away from my feet, I’d be right back up on my toes again. I remember my mother taking me to a doctor to discuss the options. He talked about surgery or putting casts on my feet. My mother felt those options were too extreme (and I tend to agree with her) and tried to just help train me not to do it anymore — a task that sounds easier than it actually was, because toe-walking was comfortable for me and so it was a deeply persistent trait.
What I’m about to say may not be popular. I’m not so happy about it myself, to be honest. But many times I see people who support autism acceptance (which, as you know, I deeply support as well!) saying things like, “why do people get so upset about toe-walking? Let people be their Autistic selves!” If you’re talking about hand-flapping, I agree. Lack of eye contact, I’m fine with. Twirling around, jumping up and down, all kinds of stims are totally fine and should not be suppressed. They are part of who an Autistic person is.
But toe-walking is a bit different. I put it more in the category of things like head-banging. Head-banging is not safe. It can lead to permanent brain injury. When someone is banging their head against hard things (and I speak as someone who has done this plenty, myself) it is important to help them find a different way to express their emotions and fill their needs. It is important to find out why they bang their head (are they trying to communicate something? Does their head hurt and they’re trying to relieve or express the pain? Are they frustrated or feeling overwhelmed by emotions and banging their head soothes them?) and try to help the person find a different way, a safer way, to fill the need that head-banging was filling.
Likewise, I have learned that toe-walking up to middle-age is dangerous. My tendons have shortened and I get injured more easily. In fact, I have been nursing a foot injury for well over half a year now. I sleep with foot braces that hold my feet in a position that helps stretch my Achilles tendons. I limp a lot. I am in pain nearly constantly. It is because decades of toe-walking will re-shape your feet in many detrimental ways. Because of those changes and the injuries I’ve sustained, I’m sometimes forced to take a few steps on tip-toe as I “warm up” and stretch out the tendons for flat-footed walking or else I couldn’t walk at all.
So here’s the first connection: toe-walking can cause lasting trauma. But in addition to the physical trauma I have from decades of toe-walking, I also live with the psychological trauma of being repeatedly corrected for toe-walking. It’s a tricky thing. All the times I was told to stop toe-walking made an impression on me and kind of melted in with all the other times I was corrected for all the other things that were either beyond my control or so deeply ingrained that I often felt that I was spending every ounce of my focus on remembering not to do the countless things I was always being told not to do. It was overwhelming!
I don’t have an easy answer to how to help steer an Autistic person without making them feel traumatized by feeling like they are always being told that they are doing everything wrong, but here’s a good place to start: don’t try to “fix” everything. Hand-flapping? Not a problem. Work on educating the rest of the world that hand-flapping is a harmless motion that some people engage in for various reasons. Don’t try to normalize the person; normalize hand-flapping. My boyfriend hand-flaps sometimes in a loving imitation of me when I’m excited. I find it charming. He is not put off by the ways I move and it is a dear way for him to show how “normal” he finds it.
This is one of the problems with therapies that seek to make us “indistinguishable from our peers.” If you try to stop us from doing anything that looks Autistic, you will be constantly picking at us to stop almost everything we do and we will feel overwhelmed and traumatized. So pick your battles. Hand-flapping is fine. Focus on things like not hitting siblings, keeping body waste inside diapers or toilets, not biting others, not banging one’s head against hard things . . . and toe-walking. Don’t worry about it at a pre-school age. Every pre-schooler toe-walks some amount, often a lot. But gradually work on flat-footed walking. If your child is receptive to verbal reasoning, explain to them what will happen if they spend too much time on tip-toes. It’s not too different from what happens to women who wear very high heels a lot (although it can be more damaging. Imagine if women started wearing high heels every single day at, oh, age seven or so, when their feet are still forming and growing), so it shouldn’t be too hard to find some information and other first-hand accounts of the long-term damage toe-walking over the course of many years can cause.
Already you see the connections: toe-walking is a body-truth and trauma can be caused both by decades of toe-walking and by trying to correct toe-walking too vehemently (especially while trying to “correct” everything else, most of which does not need correcting.)
Trauma is a big deal for autism acceptance. I believe that many of us Autistics are more easily traumatized by some things than other people are. I also think that many of us Autistics have had to endure things that are more traumatizing than a childhood (or adulthood) ought to be. And I think trauma often puts us at odds with ourselves when it comes to truth-telling.
There is a myth that Autistics are incapable of lying. It’s wrong. We can lie. Many of us aren’t very good at it. I hate lying for several reasons but one of the biggest reasons I hate it is because I’m just so darned bad at it. It’s stressful to try to keep up with a lie. It’s stressful to get caught out when lying. It’s stressful to feel bad because I’d rather not be lying. Chavisory commented on my blog that one reason she loves the story of Donald Triplett, the first person diagnosed with autism, telling others how many bricks were in the façade of a building is because he admitted later in an Atlantic Monthly article that he had lied and made up the number. She loves how that busts the stereotype of Autistics as being incapable of lying. Triplett knew that the people asking wouldn’t check to see if he was right and because they were so interested in seeing if he knew (and he was so eager to win their admiration) he lied and made up a number. And got away with it. Autistics can lie. We are more likely to tell the truth, even if it’s an uncomfortable or angering truth. But we can lie.
Trauma can rob us of the choice to tell the truth. For example, if we are traumatized enough about a particular aspect of our behavior, we may resort to lying in order to avoid getting reprimanded yet again. But, for many of us, lying is traumatizing in itself. So trauma can re-traumatize again and again by forcing us to lie. Truth-telling and trauma are linked. If you always get shouted at or even hit for doing something that you can’t help doing, you start to get sneaky and learn ways to hide it. Or lie about it. And pretty soon, you start feeling like your whole life is a lie and all you are doing is trying to maneuver around the trauma spots and not get caught. This is not just Autistics. Anyone forced to live a lie can come to feel traumatized by the constant requirement of pretense. It doesn’t matter if it’s a gay teen trying to hide their identity from judgmental parents who might kick them out of the house, or a Black person who has to be constantly aware of how they move, look, speak, walk, and so on in order to not be accused of shoplifting or worse, or an Autistic struggling to not flap their hands, pretend to maintain eye contact (but not too much eye contact!), and speak in ways that other people expect them to. Living a lie is stressful and traumatizing.
Encourage the Autistic people in your life to be truth-tellers — not by threatening punishment if they lie, but rather by setting up an environment where it is okay to be who they really are and where even dangerous actions like toe-walking and head-banging are met first with an attempt to understand why they need those actions, then by helping to find alternatives and lovingly mentoring the Autistic to be the best, safest, healthiest, most free, and truest Autistic they can be. Recognize how easy it is to traumatize someone by outlawing everything that is natural to them and don’t compound trauma by pushing them so hard to be someone they aren’t that they are forced to lie about things, especially things that are so much a part of who they naturally are.
Autism acceptance means helping, mentoring, guiding, but never trying to re-shape an Autistic person for no good reason beyond the comfort of others. If you accept Autistic people, you will accept that we often move differently, communicate differently, and think differently. Autism acceptance does not mean just letting us “go wild.” We need mentoring just like anyone else. Autism acceptance means working to understand why we do things and carefully judging before you try to change our behavior: do you want to change it to help us be healthier and happier? Or do you want to change it because you think other people will not accept us the way we are?
If you think people will not accept us because we look, think, and communicate differently, do not try to make us into people we aren’t. If you think we will not be accepted, you must work to change the world into one that can accept people regardless of neurology, color of skin, religion, or any other of the myriad things that contribute to the glorious diversity of human beings.
Do not traumatize us in the name of helping us fit in.
Do not try to make us smaller; work to make the world’s heart bigger.