A statistic about autism that is genuinely astonishing – and not in a good way – is the average life expectancy. For people with ‘mild autism’ (a misnomer: ‘ability to mask in public’ is more accurate) this stands at around 54. We are 9 times more likely to kill ourselves.
This takes the breath away. I’m 36, so in only 18 years I’ll be at my neurotype’s average death age. That sucks. Obviously it’s clear that suicide has a role to play here, and mental health for autistic people can be very poor, but what else is a factor?
Another vital thing to point out before I move on – those autistic people with co-occurring learning difficulties have an average life span of only 36-40. Let that sink in.
Executive Functioning and Self Care
Autism has a tendency to throw up all kinds of executive functioning related problems, which is to be expected considering we are trying to run software on a completely differently operating system to neurotypical people (you ever messed around with Linux?).
Self care is one area that is often impacted. Autistic people can be a bit disheveled. I certainly am these days, but this wasn’t always the case. Back before burnout, and before the complexity of parenthood stripped me of spoons, I maintained myself pretty well. Sort of. Maybe.
I don’t know why this is the case, but I can suggest that a combination of chronic stress, hyperfocus on our interests, lack of being able to view ourselves from outside, and a lack of energy all conspire a bit. Autism takes up a lot of bandwidth, so shaving can do one in. So you may notice some autistic people may be looking a bit shabby. Try living in our heads and give us a break, yeah?
But these small signs can signal slightly more problematic areas.
Apart from maybe not showering for a bit because that Lego city won’t build itself, it’s worth remembering that a sudden slide in self care is a warning sign of issues such as depression, which affects autistic people at a rate much higher than the general population.
But it can be much worse. Autistic people sometimes (and I certainly include myself in this) have a kind of inertia that prevents them from acting when a neurotypical person would act. It’s not laziness; it’s more a reluctance to veer from structure and routine.
Autistic Obstacles to Healthcare
This gets worse when stressed or in burnout, I think. I’m not necessarily saying an autistic person would not go to hospital for a broken toe, (though I’m convinced this would be plausible), more that minor ailments will go unreported as such an action barely occurs to us as an option at all.
This means that it’s reasonably likely that a lot of autistic people are wandering about like the walking wounded, with low level acute or chronic conditions that aren’t being treated. And there are loads more reasons why a trip to the GP can be out of the question.
One is that GP’s surgeries (outpatient clinics, for Americans) and hospitals are terrifying, completely non-autistic friendly places. Think about it for a moment.
Sitting shoulder to shoulder in a stuffy room with closed windows, with peculiar and unpleasant smells everywhere, bright strip lighting, people rushing around, children crying, chatter, phones and tannoys going off. It’s like Satan designed an autistic hell.
Doctors themselves are intimidating. If they know we’re autistic, then there’s a pretty good chance we’ll be patronised and told not to worry our pretty little heads about such things, or flat out disbelieved. If we are listened to, there’s the risk of being thought over-dramatic.
Remember, in the popular imagination autistic people are viewed as somehow childlike, perhaps because it’s still wrongly viewed as a childhood condition. So we don’t get the respect we need in the doctor’s surgery.
I have another problem – I’m so desperate to get out of the GP’s room that I forget most of what I was meant to inform them. Grateful I’ve been listened to at all, and terrified of wasting their time, I bolt out the door as soon as I can, not having told them my leg is broken.
For autistic people with learning difficulties, or who are non-verbal, the potential for illnesses and problems to go undetected gets very high indeed. Things are discovered too late. We begin to understand, perhaps, why autistic people can die young. The very fabric of society is unsuitable for us to thrive in.
A Lack of Social Feedback and Support
Autistic people are also often quite lonely. We may, for example, be married or in a long term relationship (yeah, autistic people can do this), but it’s likely we won’t have huge numbers of friends– those people who see us infrequently enough to notice we look different.
Our spouses or partners might not notice us losing or gaining weight in the face, or looking more wan and pale, or losing muscle tone. People tend to rely on that next circle of socialising for these “heads up” flags. Autistic people often lack that circle entirely.
There’s also the issue of abuse. I don’t know whether murder or manslaughter rates for autistic victims are abnormally high. I’m afraid, but I wouldn’t be surprised. Autistic people suffer abuse very frequently, for lots of reasons… emotional, mental, financial, and physical abuse.
Executive Dysfunction Creates Barriers to Care
But I think abuse is too big a subject for here and now. Back to getting medical attention, the very act of organising an appointment is stacked against autistic people. Having to make a phone call is like kryptonite for a start, as is being on hold for 20 minutes. Surgeries can sometimes offer online appointment management (because, you know, it’s 2019) but not always and certainly not always very well.
Then there’s the problem of fitting an appointment in, especially if you work. If you’re anything like me (God help you), then squeezing an appointment into a working day is disastrous as the appointments are so stressful, they leave you completely wrecked afterwards.
And there’s probably a 50/50 chance you’ll forget the appointment anyway. I do this so frequently that I end up ashamed to show my face. This spirals down, getting worse and worse. Executive function problems are not messing around– they can spoil everything.
Once you feel that you can’t show your face at your doctor’s surgery, real problems can start to rack up quickly. Autistic people often seem to be really good at feeling intense shame and guilt for things that aren’t that bad.
Or that might just be me.