How Can Autism Affect Your Health?5 min read

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.

Pete Wharmby

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9 Comments

  1. “Satan designed an Autistic Hell” Of course he did. He set the world against us.

  2. Pete this article is phe­nom­enal !!! One of the best I’ve read in a while.

  3. Oh man, yeah. I once was sick for 8 months, and didn’t go to the doctor till I got so sick I wasn’t able to stand. Didn’t go to the ER/hospital, even in the worst of it. Never occurred to me.

  4. Good to bring up exec­u­tive dys­func­tion, but some of this is hard to relate to when it comes to spe­cial inter­ests and rigid rou­tines causing prob­lems, can’t really relate to those things, but there is a spec­trum after all

  5. This is a great piece, and timely on a per­sonal level. Since we moved house in late August,my kids (both on ASD referral path­ways) have been ill so much the school has admon­ished me and told me to send them in even if they are ill. I com­plied yes­terday, to my shame, as my child became so ill I ended up phoning 999. I wonder if change in rou­tine can affect our immune sys­tems and make us ill? I am autistic and fol­lowing burning out sev­eral years ago I have been ill with extremely painful infec­tions as well as sore heel, per­sis­tent headaches, dizzi­ness, end­less colds, nausea, pain in side etc. Phobic about doctor too which doesn’t help.

  6. Yes! to all this! I have been unable to make a dental appoint­ment for 4 years, as the last one I had I expected to have 2 fill­ings & only had one. I asked the den­tist about the 2nd tooth & she dis­mis­sively shrugged & said it didn’t need any­thing. I knew that it did, and it sure as heck does now!

  7. Add to that too, we have been gaslit so much in our lives that we don’t even believe our­selves when we get ill. We might under­play our symp­toms or not dis­play the neu­rotyp­ical reac­tion for a symptom well enough.

    I agree exec­u­tive func­tion can be a mas­sive one. Having to call at bang on 8am in the morning and then sit in a phone queue is a prospect that makes me feel like crying just thinking about it.

  8. You mean … I’m not the only one who’s so ter­ri­fied of being (or being thought) a hypochon­driac that I never book to see my doctor when i should?

    Or who tries to go back to work way too soon after being off sick, and ends up keeping over and having to take three times as much sick leave as I really ought to have needed if I’d only waited until I was truly better to go back in??

  9. YES. Between my low exec­u­tive func­tioning and my sen­sory issues, I have a hard time eating right (I’m get­ting better at it, though) and espe­cially get­ting enough exer­cise. Even just walking feels hard: seeing and hearing cars around me, con­stantly “feeling” people around me (it bothers me even when I don’t have to interact with them), prob­lems with light, issues with my clothes, … it’s hard not to get over­whelmed. I find walking in woods much more pleasant, I’m hoping I’ll be able to move near one if I ever man­aged to make a decent amount of money.

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