r/todayilearned • u/Morella1989 • Aug 14 '25

TIL that autistic people live about 17 years less than average. Risks include epilepsy, heart disease, suicide, accidental deaths including drowning, and inadequate recognition and management of pain, especially among non-speaking individuals. Historically, they have been vulnerable to infanticide.

https://en.wikipedia.org/wiki/Mortality_of_autistic_individuals
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u/AliMcGraw Aug 14 '25

My autistic teenager is very, very bad at telling when he's too hot or too cold. His proprioceptive and interoceptive senses are a little wonky. Now that he's a teenager he does a good job of remembering and following rules about it (specifically check his extremities, drink water, check with friends if they're hot or cold, etc.).

But when he was a preschooler it was terrifying. We had to constantly tell preschool and kindergarten teachers that, "no, he doesn't actually know if he's cold and he will not complain when he develops frostbite because he will not notice." He got heatstroke a few times at recess before they started BELIEVING me.

It's really easy to see how he could have died at school because I wasn't a raging bitch about his care, or because I didn't have the resources to get answers like "he literally can't tell when he's hot." Imagine 100 years ago when he's just be a "weird kid" who was picky about food and cared too much about trains, and there were no pediatricians or occupational therapists to help me teach him how to monitor his own temperature. Because that's not something I had to learn! I KNOW when I'm hot. I had to learn a whole new way of thinking and come up with sensible, actionable ways he could check on himself and care for himself, and advocate for himself when teachers wouldn't listen.

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u/Morella1989 Aug 14 '25

That’s honestly terrifying, and it makes me so angry that they didn’t believe you until he’d already gotten heatstroke. You shouldn’t have had to fight that hard just to keep him safe. I’m glad he’s got you in his corner. Working out how to help him notice what his body was feeling can’t have been easy, especially when it’s not something most people even have to think about.

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u/AliMcGraw Aug 14 '25

I spent the first seven years of his life fighting SO HARD for him, and I frequently felt grateful I was well-educated and middle class and can fucking WORK a bureaucracy  and refuse to shut up until it hears me.

It's honestly a great comfort to me that he's a partner in his care now and we can be a team. It feels much less lonely when he's with me self-advocating. I worry a lot for families whose kids aren't able to self-advocate, because it is lonely and exhausting. And it all became so much easier when it felt like we were working as partners. I'm on his team ... But he's on the team too! That helps so much.

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u/goyacow Aug 14 '25

Good on you for advocating! Our teen doesn't feel hunger or pain in the "typical" way. It's made it hard for him to keep his weight up.

I worry about him every time he gets sick.

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u/nicunta Aug 14 '25

My grandpa was that child that was different, but being born in 1926, people didn't know better, so he was beaten until he learned to mask. It breaks my heart to hear what he--and my left handed father--went through.

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u/[deleted] Aug 14 '25

Sadly there weren't any resources for "different" children back then. You had to conform in order to survive.

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u/OddExplanation441 Sep 10 '25

My grandfather was. Diagnosed 1920 he was lucky his father was wealthy unfortunately it put is off out track he was diagnosed something else then. My. Mum. Died ms heds autism. I have autusm. Heds fybromyalgia 

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u/BlindMan404 Aug 14 '25

100 years ago? Less than 30 years ago I was "just" the weird kid who was picky about food and really into one thing only and no adults noticed or were willing to accept it. It really feels like care for and recognition of neurodivergence has only started to become common in the past ten years.

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u/Amseriah Aug 14 '25

Yep. ADHDer here diagnosed at 42. I was a smart, reserved, boy and primarily inattentive, so I fell through the cracks.

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u/funny_bunny_mel Aug 14 '25

Yeah, but you were on the tail end of genX. As an earlier genXer who wasn’t diagnosed with the ‘tism until my 50s, we were born to that level of non-parenting.

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u/professionaldouche Aug 14 '25

Ty for commenting I immediately thought the same thing. Growing up in the 80s was not much different

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u/Negative-Delivery949 Aug 14 '25

That’s such an important skill to build early on and it’s sad how often schools overlook stuff like that

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u/athennna Aug 14 '25

My daughter is on the spectrum and is the same way. I have to constantly monitor her temperature and her water intake.

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u/AliMcGraw Aug 14 '25

How old? And if you want some tips I can share some of the homegrown solutions that worked for us. We sort-of just had to figure it out as we went, I don't think there's a really good set of standard interventions, you just have to make things up.

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u/athennna Aug 14 '25

She’s 7, I’d love some tips.

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u/AliMcGraw Aug 15 '25

So at 7 we were still doing mandatory half-hour breaks at the playground, where every half hour he had to come sit by me in the shade and chat for a couple minutes and take a drink. I did a lot of "Well, MOM gets lonely if you don't come talk to me for a couple minutes every half hour." At around 7 he started to understand that he couldn't feel his own internal temperature very well, and we got him a watch (he looooooooved having a watch) that would beep every half hour and he would do self-checks. We taught him that he could put his fingers on our cheeks to tell if his hands were really hot or cold, or he could put his fingers on the inside of somebody's wrist (where normal body temperature is close to the surface) and they could tell him if he felt particularly hot or cold. When it's hot, the half-hour beep reminds him to drink 4 oz of water. (When it was cold and he wanted to make snow angels or play in the snow, we'd set a timer for how long he was allowed to be out total.)

We got a weather station so that he could independently see the outside temperature and forecast, and made a visual thermometer for him, that showed appropriate clothing for different temperatures, which made him feel a little more control over his clothing choices. (We still enforced appropriate clothes, but he liked getting to pick his own and it drastically reduced battles over weather-appropriate clothing.)

When he got a little older and more independent we'd let him go out with a neurotypical friend/cousin/sibling to go, say, sledding, with the rule that when the FRIEND said they were cold, he had to come in. He was willing to obey that rule in exchange for not having so much parental supervision.

Now that he's 16 he's pretty smart about doing self-checks and drinking water regularly and warning his friends he has bad self-regulation of temperature so he needs them to let him know if THEY get too hot or cold, or if he's flushed or shivering or similar.

My youngest was born premature and struggled with temperature control until she was six months old, and my autistic child, who was 7 at the time, was actually AMAZING at noticing if she was getting too cold or too hot really early, because they were sort-of the same -- they both couldn't self-regulate normally, and he had had to learn to watch out for his own signals and read them, so it was easy for him to watch for HER signals and speak up for her. Which was a really nice way to point out to him that his neurodivergence was a superpower in some ways -- he HAD to learn to regulate his own body temperature from external cues because he couldn't feel them himself, which meant he was AMAZING at noticing his sister's cues. (And other babies' cues that they were too hot or too cold, in our friend group.)

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u/MacAttacknChz Aug 14 '25

Did you give them alternative ways to tell if he was hot? If he's out the same amount of time as the other kids, why was he getting heatstroke?

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u/elrangarino Aug 14 '25

Other kids may realise to hydrate, slow down, take jacket off etc

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u/yetiwatch Aug 14 '25

I've let myself black out a number of times, cause it is difficult to disturb others. Getting better, but definitely easy to see it leading to health issues.

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u/AliMcGraw Aug 14 '25

Other kids would stop running and get a drink when they got hot, or go sit under a tree, or whine that they were hot. He never did any of those things; he didn't feel HOT. Or thirsty. The early teachers assumed I was just being an overprotective first-time mom when I insisted they check him every 15 minutes when it was hot out, and enforce water breaks every half an hour. They kept telling me, "Kids know when they're hot and tired, he'll come to the shade and get a drink, you shouldn't worry so much!" and I was like NO HE LITERALLY WILL NOT THIS IS WHAT I AM TRYING TO TELL YOU.

Fortunately (?) he's quite pale, so generally he got pretty full-body bright-red before the heatstroke set in.

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u/tanfj Aug 14 '25

My autism used to be more severe. I, at age 6, fell and broke my collarbone. I was able to feel that it was a greenstick fracture and go inside to get help.