It's Ok, I Get Why You Struggle With Hygiene

This is an intensely sensitive subject for so many of us.  Society gives the message, directly and indirectly, that something is wrong with people who don't brush their teeth, floss, brush their hair, bathe regularly, shave their bodies (female), shave their facial hair (male), or in general keep their appearance tidy and clean.

It causes a vast amount of shame for those of us who find these tasks intensely difficult.

There are lots of reasons why an autistic person (or someone with sensory issues) may find these tasks nearly impossible.

As a child, brushing my hair was a nightmare for all involved.  My mom insisted it be long (past the middle of my back) and, frankly, she was rough with pulling at tangles.  But I couldn't even manage to brush my own hair because the sensation of it was like nails on a chalkboard.  It was painful and grating on my nervous system.  I liked it when my hair was brushed, I preferred it brushed, but I could not handle the feeling of it being brushed.  I was seen as lazy and slovenly because of this.  And I'll just say it.  It's unfair for a child to be treated as a lazy person or a bad person because they don't want to or can't do something that causes them so much pain.  I begged to have my hair shorter. I was denied because she likes long hair.  So.... I was the kid whose hair was never brushed and was always tangled.  I went to school that way for years.  It was embarrassing and emotionally difficult but that pain was less than the pain of brushing my hair.  Please let that sink in for a moment.  The pain of being mocked, rejected and punished was less than the pain of just fixing the problem and brushing my hair.

Does that sound lazy to you?

As an adult, I keep my hair short. I like it to be about to my shoulders, any longer than that and it begins to tangle easily and it makes brushing an issue again.  Any longer than that and it becomes difficult to wash.  Difficult to dry.  So as an adult I've managed to solve the issue by keeping my hair at a manageable length for myself.  It's really a simple solution, but one I was denied as a child.  Because I keep it short, I have no problem washing and brushing it every day.

For many, bathing is an issue because the sensation of getting wet, or leaving the bath or shower into the air while being wet, is unbearable.  We have to psych ourselves up to dealing with it.  There are sensory issues while in the shower or bath too.   The feel of most washing implements is not pleasant on our skin, the feel of the water can be an issue for many.  For some, having just the right temperature is absolutely required and that can be difficult to achieve and maintain.  Then there is the feeling of dressing and undressing, having wet hair.  There can be interplay with PDA (pathological demand avoidance) where doing something we know is expected of us or that someone will notice that we have done it makes it extremely difficult to do it, as our brain automatically fights things like that.

I don't bathe often.  It's weird to publicly admit that but I don't think we should have to be ashamed of it or hide it.  What is a refreshing and comforting experience for most people is a nightmare for us.  It's painful, miserable or intensely uncomfortable.  We have to think about it and literally psych ourselves up over hours or even days to convince ourselves to do it at all. What seems so simple and natural to most people is like going into battle for us.

So I bathe about once a week.  I personally cannot stand the feeling of going from dry to wet and wet to dry.  I struggle with the water temperature but otherwise I enjoy it once I'm in.  I can't stand the feeling of my hair being wet but I combat that with keeping my head wrapped until it's mostly dry.   I don't shave at all, the sensation of it is horrible and I have the clumsiness and motor skill issues some autistics have, so I've cut myself more times than I can count.  In between baths I try to maintain with wet wipes as best I can.  And yeah, I worry about smelling every single day.  It bothers me, I don't want it to be this way, it makes me uncomfortable and embarrassed and incredibly ashamed.  

I was mocked for it in school.  I still feel the sting of some things that were said about me decades ago.  If I could have changed it I would have, that is just how difficult it is.

And then there's the teeth.  Toothpaste and mouthwash are both way too strong that they make my tongue feel like it is literally on fire.  Imagine your entire body being crawled on and bit by ants.  That's how my tongue feels.  It is torture.  As a kid when I tried to express this to my mother she said I was being a baby and basically told me to suck it up.  She was not willing to buy children's toothpaste for me, which is mild and does not have that sting.  So I did not brush my teeth.  In addition, the sensation of the brush against my teeth is very much like brushing my hair - so uncomfortable that I cannot tolerate it.  It is genuinely less painful to have a tooth pulled than to do the every day hygiene - and yeah I have had several pulled.  My teeth are not in good shape, I can't stand going to the dentist because the scraping and grinding sends me into a panic attack.  One day I'll have dentures because of this, I'm not looking forward to it but at the same time, not being able to feel something touching my tooth all the way into my bones and my soul will probably be a nice respite from a lifetime of discomfort.

So I hope if you are autistic, that this has helped you feel like you are not alone in any hygiene issues you have.  I get it, there are many of us, and we feel the same way.  It's ok.  It's not your fault. Your brain just was not built to tolerate these sensations so find whatever solutions do work for you and don't feel ashamed or guilty.  You're doing the best you can with what you have to work with, and that's the only thing anyone could fairly ask of you.

And remember.  Those who matter, don't mind and those who mind, don't matter.

Let's Talk About Food (Sensitivities)

I have a love/hate relationship with food.  It's been a lifelong struggle with me and is probably the most obvious and most commented on of my sensory issues.

As a child, I would try a food and if the texture wasn't just right, it would gross me out.  The most glaring issue I had was with meat.  I liked process meats more than other kinds of meat because they're somewhat homogenized.  But even with processed meat I would encounter gristle or weird textures, and that would make me gag.  Once that happens, I would completely lose my appetite. At that point even eating something I like and that I know is good and has a nice texture would still leave me feeling sick and my stomach would be very unsettled, making me feel like I may vomit at any moment.  The worst offender for me was ground beef - because crumbled up in a dish like spaghetti or hamburger helper, it all felt like gristle.  I tried, I really did.  I wanted to eat the pasta part of spaghetti but I couldn't pick out all the meat and I'd just end up gagging at some point and feeling unable to continue eating anything for a while.  I have always loved canned spaghetti pasta that has no meat,  but couldn't stand real spaghetti because of the association with ground beef and crumbled sausage that has made it so any thin pasta is off-putting to me.

I also had issues with chicken nuggets because I'd occasionally hit gristle in there, and for whole chicken I could eat just the outer-most part of the drumstick, and the breast, but wouldn't fully pick all the meat off of the pieces because the deeper it went the more likely I was to get a weird texture.  I got a lot of flack for that and I was called wasteful an awful lot as a kid.

My issues with not being able to eat so many of the dinners prepared at home and some of the ones prepared at school lead to me overeating dramatically when I was able to get a meal I actually enjoyed.  If there was pizza with no gross toppings, I ate every bit I could get my hands on.  Same with mashed potatoes, sandwiches, any potato except sweet potatoes (pureed is ok but not if those strings are in there).  There were a lot of fruits and vegetables I couldn't bring myself to eat as well.  While I could have banana I'd obsessively pick every string off of it because those grossed me out and i often left the very end in the banana because I do not like eating the stem connection points of any fruit or vegetable.  Even that tiny dot at the bottom of a cherry tomato is not allowed.

As a kid I could not get anyone to understand these issues.  I was mocked and belittled for being so picky.  It's like you're stuck between two strong opposing forces - on one hand your brain and body react violently to the food but on the other hand you have an authoritarian presence you are afraid of telling you that you must eat it.  It felt impossible, and I learned to just pick at what I could, wait for meals I did like or sneak food when my family was asleep or at work.

To this day, these issues will end my meal if they arise.  If there is sand in a seafood dish, egg shell in an egg dish, gristle or fat in any kind of meat, bones in any kind of meat except sardines and salmon where they are softened, a smooth, soft or creamy food with any kind of crunch, like celery in tuna salad, crunchy onions in anything, mystery items or ingredients I can't identify, the food is poky or stabby in my mouth - for example I can't eat the really spiky spring mix lettuce or the baby spinach that has those long stems.  I can't eat the stalks of any lettuce, so for me to eat romaine, which I really like, I have to slice out the stem then chop up the leafy parts.  I don't like overly chewy foods, I absolutely cannot do bubble tea, and any food that is just a mix of stuff with tomato sauce is an absolute no-go.  I detest lima beans for their pasty, gritty texture, I hate pineapple or anything with a pulpy texture.   Basically, any food that has mixed textures is probably going to be a problem for me with the glaring exception of putting potato chips in a sandwich, which I love because it covers up any gross texture in the meat.  Apparently I like the crunch of chips that much.

This is an area where I would advise parents to be sensitive to your child's food sensitivities.  I know the focus is on your child having a broad diet and good nutrition, but forcing them to eat foods that make them genuinely feel sick can cause them harm.  It can contribute to dysfunctional eating habits and to emotional disturbances.

There are so many different ways to prepare foods that it is possible to find a way to get them the nutrition they need while also giving them the texture they need.  An excellent example of this is I am ok with drinking smoothies containing vegetables I absolutely will not touch if they are not pureed.  A protein shake is very welcome, while meat itself is not.  Simple foods that aren't mixed are great, for example when I might have refused a vegetable filled casserole, I'd gladly eat raw veggies with ranch dip.  Let your kids cue you in to what works for them and you can find solutions that work for both of you.  In the long run, it makes things easier and happier.