Standing under the steaming shower yesterday, I thought about the years between my first brain tumor symptoms and its diagnosis: 1990-2004. In those fourteen long years, I became irritable and tactile defensive. Light touch hurt my skin. I could tolerate deeper pressure, but light touch hurt. I told my doctor, “The top sheet hurts my skin. So do my clothes, showering, and wind.” He said I had fibromyalgia, and he put me on nortriptyline, an antidepressant. He didn’t know I had a meningioma brain tumor, nor did he know that nortriptyline is the drug of choice for inoperable meningioma. He heard horses; I had a zebra. So he masked my symptoms while the tumor grew for fourteen years.
Fortunately, my tumor was operable, and from the day I had it removed, I lost the tumor-induced aversion that I had developed to the sound of violins and to florescent light. I became my usual imperturbable self. And I lost my tactile defensiveness.
Then I thought about the college students with Asperger’s syndrome whom I have known. For most of them, tactile defensiveness made personal hygiene an issue. They hated showering, bathing, washing their hair, or brushing their teeth. They wore the same clothes day after day.
At first, we tried hinting. “Susan, let’s put bathing twice a week on your schedule.”
“I don’t want to take a bath.”
“Okay… Then let’s put changing clothes daily and using deodorant on your schedule.”
“I don’t want to.”
Finally, we found a student who interpreted for us. She said, “Water hurts our skin. The shower is like little sharp needles hitting us. The bathwater feels bad in a different way. And when I get out of the water, the air on my wet skin hurts.”
Wow. We had no idea.
Some students would get into the water but refuse to use soap or shampoo, and we asked her about that. She said, “Soap and shampoo feel slimy on our skin, like rubbing the slime in a stagnant pond on your body. Using a washcloth is like rubbing your skin with sandpaper. And the smell of shampoo and soap makes us sick. You have no idea how awful toothpaste feels in our mouth, or how much a toothbrush hurts us.”
We learned that the acoustics of the shower make sounds hurt, that deodorant feels gross and smells worse, and what the clothing industry has come to appreciate: that tags in clothes irritate the skin. We learned that some clothes feel better than others, and when you are dealing with the stress of college life, you need to wear your most comfortable sweatshirt and jeans every day. I get that. Nothing feels as good to me as my old pjs.
We argued, “We’re so sorry! But when you smell bad or look dirty, other people have to smell you and look at you, and they won’t want to be around you.” That argument didn’t work because, by and large, our students weren’t interested in what other people felt or thought. “If people don’t like the way I look, they don’t have to look at me. If they don’t like the way I smell, they don’t have to sit by me. Their problem, not mine.”
A more helpful argument involved discussing the overgrowth of bad bacteria colonies on unwashed skin, hair, teeth, and clothes. We explained that soap broke the surface tension of water so bacteria could then be dislodged by friction, and that using water without soap merely resulted in wet redistributed bacteria. We explained that water could then rinse the bacteria off the body, hair, teeth and clothes, and then down the drain.
The argument was useful, but the aversion to hygiene regimens prevailed.
So I offer some outside-the-box solutions to consider.
First, unless they are working up a sweat, people don’t need daily baths. As long as hands, underarms, the area between the legs, and the bottoms of the feet are cleaned daily, much bacterial growth can be controlled.
Single-use pre-moistened cleansing cloths can serve as a bathing alternative. My ancient auntie used these daily for years and bathed only every couple of weeks.
Unscented shampoos and soaps may help.
Bar soap may be preferable to shower gel.
“No poo” advocates have recipes online for alternatives to shampooing. (Honestly, it’s the “no poo” movement. Make of that what you will.)
Chewing on and brushing with miswak sticks may be easier for people with oral sensory issues than is toothbrushing. Miswak sticks are pieces of the Salvadora Persica (Toothbrush Tree). The chemical properties of the miswak decrease gingivitis, and at least one clinical study found miswakking more effective than toothbrushing. You can buy miswak sticks from Amazon. I ordered some this morning so I can tell people that I’ve been miswakking.
What works for one person with ASD may not work with another. Ergo, ask the person who resists a typical hygiene routine what is uncomfortable about it for him. Then look for ways to minimize or eliminate that factor. Change one thing at a time and see what works. Try to have the solutions in place before your child leaves for college when his world will become even more stressful.
If water hurt your body, soap and shampoo felt like slime, brushing your teeth was torture, and most clothes irritated you, wouldn’t you resist subjecting yourself to them? I would. So think out of the box and work with your loved one who has ASD to figure out person-centered solutions to make life better for everyone.