Autism and Health

Autism and how it affects our general health - a thread to try to raise awareness of the difficulties #autistic people face. Please share widely. #thread #Neurodiversity

A statistic that is genuinely astonishing - and not in a good way - to do with autism 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 kind of 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 comorbid learning difficulties have an average life span of only 36-40. Let that fucking sink in).

#autism has a tendency to throw up all kinds of 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 of interest.

#autistic people can be a bit dishevelled. 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, distraction with 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.

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 this can lead to slightly more problematic areas.

Apart from maybe not showering for a bit because that Lego city won't build itself, its worth remembering that a sudden slide in self care is a warning sign of issues such as depression, which affect #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 acting when a neurotypical person would act. It's not laziness; it's more a refusal to veer from structure and routine. 

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 action barely occurs to us.

This means that I reckon its reasonably likely that a lot of #autistic people are wandering about like thd walking wounded, with low level acute or chronic condition that aren't bring 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 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 OTT.

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 thd 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's 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.

#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, of losing muscle tone. People tend to rely on that next circle of socialising for these heads up. #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 and physically abuse.

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 its 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 they're so stressful, they leave you completely wrecked afterwards. Oh, hello year 9! Yes, let's... learn... stuff...

And there's probably a 50/50 chance you'll forget the appointment anyway. I do this do frequently that I end up ashamed to show my face. This spirals down, getting worse and worse. Executive function problems are not fucking around - they can spoil everything.

Once you feel that you can't show your face at your doctors surgery, real problems can start to rack up quickly. #autistic people seem often to be really good at feeling intense shame and guilt for things that aren't that bad. Or that might just be me.

Anyway, I'm nearly at the 30 tweet mark so if you've made it this far, thanks. Please share if you can, let me know if I can be of help. If you feel like buying me an espresso, that'd be nice: 

https://www.buymeacoffee.com/UfTVnRY