I was wondering if you could go in depth about autistic people who need help doing cretin things like going to the bathroom,washing hair, remembering to eat, ect. You don't really hear about that much I and I would like to learn more about people with autism who have trouble with task that for most people are 'simple'. I often forget to eat/drink because i don't notice I'm hungry
Hi anon. This is a very big topic that is difficult for me to write about here, seeing as how every autistic person is different and will have different disabilities and difficulties.
There are lots of daily tasks that neurotypical and able bodied people tend to think of as simple or easy but that can pose real challenges for autistic, neuro-atypical, and disabled people. Many of these are what is known as “self care skills”. Personal hygiene (brushing ones teeth, showering/bathing, dressing, etc.) and basic homemaking (preparing food/meals, cleaning counters and sinks, sweeping/vacuuming, maintaining a tidy living environment, etc.) make up most of the “self care skills” people talk about.
There is a stigma surrounding those who, for whatever reason, need assistance or accommodation with self-care skills. This is partly because of a lack of understanding or empathy on the part of the able bodied/neurotypical majority. The able bodied/neurotypical thinking appears to be something like, “I learned to brush my teeth when I was four, and I have never had any trouble brushing my teeth, so idea of someone who does have trouble brushing their teeth is confusing/pitiable/unbelievable to me”.
I think another part of the stigma is that many of the self care skills people talk about were “supposed” to be learned and mastered in childhood. The able majority is all about the normative milestones, and there is a definite link in the average able/neurotypical person’s mind between the mastery of self care skills and adulthood. This means that disabled people who struggle with or who need accommodation to perform self care skills are often infantilized and presumed to be less competent overall, even in areas where they display no disabilities or challenges.
When it comes to autistic people specifically, there are many reasons that self care, like showering or remembering to eat or drink, might be difficult. In my mind the three biggest reasons are sensory processing issues (SPD), executive function issues (executive dysfunction), and comorbid conditions (other disorders or conditions that are also present).
For example, showering might seem simple at first glance, but it is actually a fairly complex tasks that requires preparation, follow-through, and executive function to get it all started and keep the process moving in the right direction. On a day where my executive functioning skills are shot I can have trouble getting a towel out of a drawer, let alone starting and successfully completing the entire self cleaning/hair washing/face washing/teeth brushing/deodorant/moisturizer routine.
There is a chance that I will stop halfway through and go back to bed covered in soap suds, or that I will get the shampoo/conditioner order backwards, or condition my hair three times without actually ever having done the shampooing part. And of course, the biggest likelihood of all is that I won’t ever actually make it into the shower, since it takes executive functioning to start a task at all. And when it comes to feeding yourself— well, even the most simple of sandwiches takes multiple steps to create, which explains why when I lived on my own I would live off of apples and baby carrots for days.
Using the same example, sensory processing issues can also get in the way of a successful showering experience. On days when my SPD is particularly bad, like when I’m tired or sick, even the gentlest setting on the showerhead is like needles all over, and the feeling of water droplets spraying on my face makes me want to scream. And then there’s the smell of the soap and shampoo— even unscented products have a scent, so if I manage to get under the water I might have to skip the actual soap based products that day. Moisturizers are a sensory nightmare for me, but I also can’t stand the all-over itchy, dry, irritated feeling when I go without. So which discomfort do I choose that day?
The whole area of personal hygiene is a minefield for people with SPD. And say you have a job interview/family get together/whatever on a day when your sensory issues are at a high— now you have to decide whether to use your mental energy enduring the showering/dressing/hairstyling/makeup process, thus leaving you less energy and brain power for the actual interview/get together/whatever, or take it easy on yourself and look less-than-polished. For myself on my bad sensory days, there really is no winning. There is only my (often futile) attempts to minimize my discomfort and conserve energy.
SPD also contributes to the apparently common trend of autistic people neglecting to eat or drink. Being undersentivie to sensory input can also mean being undersenstive to sensory input that comes from inside oneself, like hunger, thirst, or the urge to use the bathroom. For myself there are times when I don’t feel thirst so I don’t remember to drink. There are other times when I know that I am feeling something inside but cannot easily identify the sensation, so it could be pain, nausea, thirst, hunger… anything. Being overwhelmed by external sensory input can also cause me to miss my body’s internal signals.
I won’t go in depth on the topic of comorbid conditions, but I will say that I have OCD as well as Autism, and that when I am having a bad OCD day/week/month, that is just another heavy thing weighing me down and making even the most seemingly simple or easy tasks a struggle. And say I manage to get up, get my stuff together and start to make a sandwich— My motor dyspraxia means that I might not be able to open a jar, or I could cut myself with a knife, or I could just drop the whole sandwich on the floor. It is just so tempting to eat one-step snacks, or nothing at all, to save your brain power and spoons for the things that feel more important.
Epilepsy, ADHD/ADD, OCD, depression, dyspraxia, anxiety disorders, and eating disorders are often seen alongside an autism diagnosis in autistic people. Add any of these things on top of the pile of sensory/executive functioning issues I mentioned above, and you have yourself a recipe for a hard time.
The parts of being autistic that make life tough all around— the SPD, the dyspraxia, the executive dysfunction— are the same things that can make seemingly simple tasks a struggle, or even impossible without aid or accommodation. For us autistic people I feel like the most important thing to remember is that our worth isn’t defined by our ability to successfully brush our teeth, use the toilet, fix ourselves some ramen, or drink eight glasses of water a day. Our worth comes from within us, because we are people.
And when it comes to that elusive “quality of life” that able/neurotypical people like to talk about the same thing holds. Just because things that are simple for you are difficult for us doesn’t make our lives any less worth living, any less potentially joyful or enjoyable. I’ve yet to meet an allistic person who feels like their ability to dress themselves independently defines them as a person, and I think it’s the same for autistic people. Our lives, our selves, and our personhood are defined by so much more than our “self care skills”, or lack thereof.
The more I read the. More I want to cry because I’m not alone. I thought it was just me, that I was broken. ( not that I think anyone else that needs help is!)
(What follows is from the same post, it's my response)
I know when I get “in the zone” on something, I tune everything else out. When I finally snap out of it, hours have passed and I’m hungry, have to pee, thirsty, and who knows what else. I had at least one instance of spending a whole 8 hours straight, no breaks, just drawing. Holy CRAP I felt horrible when I snapped out of that one. I try not to let myself stay in the zone that long.
As to everyday life, a lot of self-care things I just forget because I’ve gotten distracted. I get up and I’m like “Oh gotta do the thing,” but then I’m like, “Wait, gotta do this other thing first,” and then I forget about the first thing and do other stuff, then an hour later or so I remember again and we start the process all over again.
Then, too, depression plays a major role in my self-care issues, too. I keep my hair in braids so it doesn’t get tangled into rats nests at night, but a lot of mornings I don’t have the energy to comb them out and rebraid them, so I’ll either just leave them in, or just take them out and comb them, but not rebraid my pigtails; I leave that for some time before bed. But I don’t always have the energy to do it then, either.
And I don’t mean bored or anything like that, I mean I am fucking EXHAUSTED after combing out my hair and/or rebraiding it, especially my arms. The stamina my arms have for staying up in the air doing things is not very long. Frequent breaks are needed.
As to the brushing of the teeth, I think I’m gonna start getting those things you put on your finger to “brush” with, because normal tooth brushing triggers so many of my sensory “ick” triggers; toothpaste is nasty in both taste and texture, I don’t like the feel of the bristles in my mouth, toothpaste makes me gag (anything in my mouth that isn’t food or drink pretty much sets off my gag reflex); and I have issues with saliva that are weird, too. (Saliva is more disgusting to me than even puke or poop; I know it’s irrational, but there you are. I only get through the days by putting any awareness of saliva behind a nice brick wall in my mind.) I also can’t stand the sensations of mouth wash; it’s vile stuff.
This post also explains why I stand around staring at all my food in the morning, hungry but not making anything. I’ve noticed in the past that it’s not so much a lack of appetite, just a lack of, now I have a term for it, executive functioning. Because it’s true, making even a simple sandwich is a complex task and is often too much for me in the mornings. Sometimes even putting a corndog in the microwave feels like too much effort to go to, so I’ll just grab a granola bar or eat some lunch meat on its own. This could explain why I am so fond of the old-fashioned “grab a hunk of meat and a hunk of bread and eat them separately” that people used to do before the sandwich was invented.
Good to know it’s executive function issues, it makes sense, because on those mornings I stand around staring at the stuff in my pantry, I know that if someone handed me a Subway sandwich or a slice of pizza or something else already made, I would eat it right away, so I knew it wasn’t really an appetite issue. And now I have the right vocabulary to explain the issue to myself and others.
Aside from the ignoring of bodily data while “being in the zone,” I also sometimes ignore or don’t feel bodily data. I frequently have times when I know I have to get something to eat, or go to the bathroom to pee, and I just sit there doing what I was doing anyway because what I’m doing is engrossing enough that I don’t want to stop or even pause. To help with the eating side of this, I keep food in my room that I can grab if I’m hungry and can’t get myself up for a proper meal.
This was cross-posted from http://fayanora.dreamwidth.org/1241357.html
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