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.
- Autism and Responding to Authority - December 15, 2019
- How Can Autism Affect Your Health? - December 2, 2019
- 50 Reasons why an Autistic Adult may be in a Bad Mood - November 27, 2019
10 Responses
“Satan designed an Autistic Hell” Of course he did. He set the world against us.
Pete this article is phenomenal !!! One of the best I’ve read in a while.
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.
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
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.
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!
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.
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??
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.
Ouch, I don’t know what to say to this, because I think you are articulating something I have been observing/trying to understand about myself in response to having very recently been hospitalized with acute respiratory failure. I was having breathing problems that I let get to the point where they were truly life-threatening before I got myself to the emergency room, and not because I was in denial or did not realize I could literally die. It was because, despite there being multiple points in time where I could have intervened before my situation got worse (and I was fully aware of it), either the feeling of needing to follow through on some pre-existing plan (travel which involved a lot of coordinating with other people that I didn’t know how to just cancel last minute), or simple inertia (I knew I should go to urgent care, but I could not do so unless someone directly ordered me to, and I was away from the home where people I loved would have told me to go DAYS ago, and was masking my symptoms from my housemates who were essentially strangers by literally hiding in my room and only leaving to go to the bathroom/get food when they would not be around to see the condition I was in.)
I did have one friend who took my to get some tests done, who saw the condition I was in and was worried for my life, but didn’t feel comfortable ordering my to go to ER because she was confused about how to handle the situation. I was almost waiting for her to do so, because I needed that external force for myself to be able to initiate that action – even if the face of a life and death situation. Perhaps ESPECIALLY in the face of a life and death situation, compounded by the fact that I was still waiting for my insurance application to kick in. There are more details than I should probably share about why I kept ‘perseverating (i.e. I was waiting for my follow up appt with the free clinic which was only operating once a week on Sundays.) I feel this executive dysfunction, if that is what it is, is also why I found it impossible to communicate the severity of my symptoms, even when I was sitting on a Zoom call with several people who care for me. It just didn’t fit into our two-minute check-in’s and I couldn’t possibly break that structure. I think these instincts are even worse under stress, which compounded by inability to get help.
I am undiagnosed, and not even convinced I am autistic, but as I was moving through this, VERY cognizant of what was happening to me and how I was/wasn’t able to promptly react to it (I am SO bad at reacting quickly to things!) I kept thinking in the back of my mind – is this an Autism thing?
I want to share this article with my friends/family/community to help them understand what I went through, but that feels terrifying. It feels like too much to share with them. Too much information. Definite oversharing. And yet…I just want to feel seen. I think a lot about community care. I am thinking now about how this happened to me when I was away from community, and what community could look like that could help Autistic people die less in the face of everything you mentioned. And I DON’T know what that would look like or how to create it. But I know if I was with my community, I would have gotten help way before it got to the point that it did.