My mother may have been a nurse in a psychiatric ward, but she could never seem to accept that I am disabled. I don’t know whether either of my parents ever suspected I was autistic, but they never pursued a diagnosis for me. Even when I was a teenager and my difficulties managing a neurotypical life became more and more clear, my mother still couldn’t accept that the reason was anything other than laziness. She opposed me getting evaluated for depression, she opposed me getting evaluated for ADHD, and I still don’t think she believes that I’m autistic.
But let’s start earlier than that. As a small child, I was given a few different labels. Shy, smart, quiet, well-behaved. I had no close friends, but adults around me didn’t seem to notice. I was invited to birthday parties (along with the rest of the class) and I got along well with one of my classmates, so nobody noticed any problems. Sure, I had some unusual habits like sucking my thumb long after I stopped being a toddler, chewing on practically everything, and repeating short phrases over and over for fun, but those were attributed to me just being a kid.
Highly structured days disguised my trouble with prioritizing. Smaller blocks of time spent on each activity disguised my difficulties staying focused. Having little to no responsibilities disguised how easily I get overwhelmed. Me being introverted (or “shy”) disguised my trouble socializing with my neurotypical peers. An emphasis on doing what you’re told disguised how mystified I am by the concept that there are rules you’re allowed to break. The result of all this was that I appeared to be a shy but clever neurotypical girl who always followed the rules, not a well-supported autistic girl.
But when I was around 9 years old, workloads started increasing. Suddenly I had to study for spelling tests, complete weekly math worksheets, and work on long-term science projects. I remember vividly how hard it was for me to sit at the dining room table and do those worksheets and projects. I would be in tears almost every time. I thought to myself, “How could my teacher do this to me? Doesn’t she know how much it hurts me?” That was about when I learned that my pain doesn’t matter, as long as I get my homework done and do it well.
Unfortunately, this happened to coincide with my parents’ separation and bankruptcy, so my mother didn’t notice that I was struggling. She didn’t notice the running problem I had where I wouldn’t work on my homework until the last possible moment. She also didn’t realize that I was starting to struggle with insomnia. I still picked new concepts at school up quicker than most of my peers and got straight A’s, so I was still one of the “smart kids.” I had a friend in my class, so I wasn’t all alone. But I don’t blame my mother for this, I understand that she was doing the best she could to raise my siblings and I during a period of immense hardship for our family.
During this time where I needed to start managing more stress and uncertainty in my life, social expectations started rising as well. Adults started telling me off whenever I stimmed. I was acting like a baby when I sucked my thumb, I was weird for chewing on erasers or my sleeves, I was annoying when I repeated phrases or sounds to myself, I was gross when I bit my nails. The reactions to my ways of self-soothing told me that they were bad habits that I should be ashamed of. It didn’t help that I had no idea why I felt compelled to stim. It just left me with the explanations that were given to me by others: that I had to break these “bad habits” and that I was at fault for not trying harder to break them.
I wish that my stims had instead been redirected to other, safer stims. I wish that I’d had access to chewies or at the very least been allowed to chew gum during class. But, because I didn’t know that my stims were natural and healthy ways to regulate myself I was left with two options: feel anxious and upset but don’t take steps to soothe myself, or stim and feel guilty and weak for giving in to the urge to feed my “bad habit.” This set me up for the depression I developed a few years later. I internalized the idea that I was somehow defective for not being able to calm down without stimming, leaving me in the perfect position to start hating myself.
Trying to stop myself from stimming caused me to have crying fits that were much bigger than they needed to be. Something would set me off, like my older sibling teasing me or my mother scolding me, and I’d start to cry. But instead of stimming to calm down, I forced myself not to stim at all. Without any way of soothing myself, I would continue to cry and cry. I would only stop if I gave in and stimmed, or if my throat hurt so much from sobbing that it would be more painful to continue crying than to stop and ruminate in self-hatred.
If I’d been taught neurodiversity as a child, I think my childhood would have been very different. If I’d known why I stimmed, or why homework was so hard, or why small things made me so upset, I think I would have been a healthier, happier kid. But since I didn’t have those foundations I continued down the path of thinking that there’s something wrong with me, leading me to value school and social obligations above my own physical and mental well-being. I believed that I was the one that needing fixing, not my environment.
This is a large part of why I promote neurodiversity. I don’t want autistic children (diagnosed or not) to have to carry the burden of destroying their sense of self-preservation to contort to the standards of neurotypicals. I don’t want autistic children to hate themselves for needing to stim. I don’t want them to put themselves through physically and mentally painful endeavours because they’ve been told that their pain is an overreaction. I want them to be allowed to respect their limits, even if those limits are different from those of their neurotypical peers. No, especially when they’re different from those of their peers.
Astro Autistic 