Let me be real here. Hygiene is not a topic that I like to talk about. I’m embarrassed; it’s one of the least talked about social skills, yet the one you’ll be judged most for not complying with. I have spent my entire life battling with hygiene, mostly because the barriers to success are twofold. One, what is considered hygienic is highly dependent on the society, and two, the majority of activities that are categorized as hygiene are very sensory heavy.
My current cleaning challenges are not new. Since I was very young, I’ve had an aversion to things that had, what I called, ‘slimy’ textures. There’s even proof! Home video exists of an adorable toddler me, fighting with my mom about sunscreen. It wasn’t a tantrum, no, in true me fashion, I slowly back away, grunting and flapping. Interestingly, that’s still my reaction to lotion.
The minute I was old enough to not require supervised bathing, I began looking for solutions to limit my exposure to it. Baths made me feel slimy, and showering got my face wet, no matter how hard I tried to avoid it. I did learn quickly that if I turned on the shower and then sat in the bathroom reading for 20 minutes or so, no one really questioned whether I actually got IN the shower or not. On top of that, my biracial hair, while not as porous as my father’s, only needed to be washed every few weeks. Which was good, because when it was long, most of the way down my back, it took at least 24 hours to dry. If I was lucky. Since then I’ve perfected the ideal balance of waiting just long enough to shower. My hair is also very short, so it can remain unwashed almost indefinitely.
In high school I solved another hygiene problem- I hate wearing clean clothes. The smell of detergent, even scentless, is unpleasant, and while most people love putting on crisp clean clothes, I vastly prefer putting on something that I’ve worn for days. Or weeks. Turns out, everyone in their teens is going through their smelly puberty phase, no matter how much body spray they put on to cover it, and if you wear jeans and a hoodie every day, no one can really tell how often you’re changing them. Teenagers can be very self-centered. Thank goodness.
Becoming an adult brings new hygiene expectations, and I struggled to meet them. Working with kids meant that it was acceptable to wear comfortable clothes, but being socially acceptably hygienic was a puzzle. What was the maximum length of time between showers that I could get away with? Would my fuzzy curls give away the fact that they weren’t being washed? And worst of all, would the kids give me away by informing me at the top of their lungs that I was smelly?
Autistic Burnout and mental health issues plagued my twenties. Which was bad for my career, but good for my hygiene preferences. When you never leave the house, showering, teeth brushing, and changing your clothes suddenly become unnecessary. Granted, having a very understanding spouse in this situation is important too. While my wife definitely encouraged me, constantly, it seemed, she was very understanding of my reasons for not conforming to social cleaning standards. Plus, she was amazing at taking stubborn tags out of clothes. We also made deals, if I showered, I had to put on clean clothes (even socks!) and if we were leaving the house, deodorant was necessary. Even I couldn’t deny that it was reasonable.
An autism diagnosis changes a lot of things. A lot. So many things start to make sense, and for me, hygiene was a big one. Framing my many issues as sensory problems suddenly made them more understandable. I don’t like water on my face because of how it makes my skin feel. I despise brushing my teeth not only because the toothpaste tastes terrible, but also because it makes the surface of my teeth feel different. Changing clothes had to do with things smelling different, and also with the texture of the cloth changing. Seeing it all this was made me feel less guilty about not caring about societal expectations.
Occupational Therapy did not begin pleasantly. There were so many things that I wanted to work on, and all my OT wanted to talk about was hygiene. We had sticker charts, we made routines and schedules, we even devised a reward system for when I made my hygiene goals. Most of these flopped. Luckily, my occupational therapist, who knows me so well at this point that it’s infuriating, realized that forcing these changes on me without delving into what the base issues were was useless. This is still a work in progress. Clearly.
I spend a lot of time explaining the way that I think. How autism affects who I am as a person, and how I live my life. That’s not what I’m talking about here. I’m putting my struggles out there, specifically because it’s not something I can really explain. Yes, I know that the issues are sensory based, but there’s no reason why enacting small changes should be so hard for me. These issues have existed my whole life. I’ve spent my whole life trying to minimize my contact with cleanliness. Even this doesn’t explain my problems. Two steps forward, one step back. Sometimes two steps back. Sometimes three. I fear that I will be fighting this thing for the rest of my life. I fear that no amount of stickers, or rewards, or distractions will decrease the stress I experience on my scheduled teeth brushing day. I fear that it’s not worth it. Is it worth it?