Autistic and really struggling with the heat

[autistickie]

Are any other autistic people really struggling with the heatwaves? I have terrible heat tolerance as well as sensory issues that get worse the warmer it gets- I feel like my brain is running on half capacity! I’m struggling to sleep and I can feel myself getting closer to either a meltdown or a shutdown the longer it continues 😭

Is anyone else in the same boat?

Maybe that is the case with my DP. The heat has not bothered him at all. He will sit there sweating buckets and not seem to be bothered by it. Meanwhile, the wet of sweat, my own hair on me, the feel of clothing on me. just makes me feel awful.

But then I have an autistic friend who wears the same clothing whatever the weather. It is his safe clothing. He has been out in this weather in his puffy coat and hat. He has been struggling because he is fucking roasting, but there is no way he will wear something more weather appropriate.

I'm autistic and particularly sensory sensitive. When I'm overstimulated by anything (loud noises, bright lights etc) my body responds by giving me vicious headaches. When it's really hot I basically have permanent raging headaches that I can't do anything about. So I really sympathise. Poor sleep just makes it worse.

I’m no expert, but I just think it’s worth saying that while lots of us are finding the heat hard, for some autistic people it genuinely is harder than for a neurotypical person, and that’s not a complaint or an exaggeration. It’s a physiological difference recognised in the official clinical diagnostic criteria for autism.

The DSM-5, the manual doctors use to diagnose autism worldwide, explicitly lists hyper and hyporeactivity to temperature as a core diagnostic feature under Criterion B.4. This criterion was added in 2013 following decades of peer reviewed research, including extensive work by occupational therapist and researcher Winnie Dunn whose Sensory Profile studies documented sensory differences in autistic people consistently across age groups. Some autistic people are overwhelmed by heat far sooner than a neurotypical person in the same conditions. Others may not register dangerous overheating in time to respond safely.

Some things that help are cooling vests or neck wraps, electrolyte drinks rather than plain water, planning outdoor time for early morning or evening, and taking indoor breaks before overheating sets in rather than waiting until it becomes a problem. Prevention is key because by the time some autistic people register they are overheating they may already be significantly affected.

The effect of some medications is well known & is evidenced & researched

As far as I know there is no evidence that autism affects temperature regulation. The evidence is anecdotal. It's more likely to be a sensory or coping difficulty.

That's not to dismiss it it's just not the same thing in medical terms

Looking at interoception the hypothalamus and autism gives some understanding as to why the heat can be particularly difficult for some autistic people. It doesn’t only cover heat but also hunger, urge to use the toilet etc if an autistic person has poor interoception it can get very tricky in the heat. Chuck in sensory overload and any heat sensitive medication and I can imagine that it’s a lot to manage.

Take care OP I hope relief from the heat comes soon for you.

What a bunch of cunts.

Many autistic people struggle with heat intolerance due to differences in their nervous system and sensory processing issues.

Hope you’re ok OP.

Once air con units come back in stock, if you can afford one, I would definitely recommend getting one.

I think actually you are both right in some ways.

I read a lot of medical & as scientific evidence as part of my job.

That study is talking about sensory sensitivity eg to noise or temperature which is well known in autistic people

It does not say that autism affects temperature regulation (eg affecting the hypothalamus or cardiovascular systems).

There is no evidence which shows a difference in physiological functioning as there is with some other disorders & with some medications.

That's not to undermine that sensory sensitivities in autism can be extremely debilitating.

The groups most likely to suffer heat exhaustion & death are the very young, the elderly, people with cardiovascular disease, those on certain medications & those with disorders that affect physiological temperature control.

DD is autistic and cannot regulate her body temp. She hates anything above 20 degrees so this heat is hell for her.

Why are people so desperate to claim that neurodivergent people don't struggle more with certain things?

Yes, the hot weather is uncomfortable for most people. That doesn't mean some people don't struggle more because of many different conditions (pregnancy, menopause, being very old or very young etc...).

Autism can cause issues with interoception. This means some autistic people don't realise that they are overheating or dehydrated as quickly as neurotypical people. They therefore don't get the signal to take action to cool down or drink water, which can cause them to further overheat.

Sensory issues can also make being too hot, or too cold, more uncomfortable for some autistic people. This isn't limited to the sensation of actually being hot (or cold), it can also include sensory aversions to being sweaty, bright sunlight, wearing weather appropriate clothing (one of my family members needs the sensory input of a sweatshirt to regulate... that's not feasible in 30 degree heat without seriously overheating), even the feeling of a fan can cause sensory overwhelm in some people.

Many antidepressants actually cause your body to struggle more with regulating body temperature. Autistic people (especially women) are more likely to be prescribed these medications.

Acknowledging that some people struggle more than you doesn't take away the fact that you're hot and bothered.

Two years ago Christmas eve was exceptionally warm in the south. My autistic kid wasn't convinced that it will be warm,so wrapped himself up and promptly fainted during choir service. He didn't even realise that removing his hat/scarf/gloves was an option.He can only wear uniqlo airism tshirts that helps with sweat.OP please have a look at these from Uniqlo.

With genuine respect, if you think it’s better than the miserable winter weather…we are not in the same boat. For many this weather is massively life disrupting and genuinely life threatening.

Many autistic people have dysautonomia, eds and things like mcas, which can affect the ability to cope with the heat. We also often fail to recognise thirst or recognise when we need to rest in a heatwave.

Being autistic isn't about wearing quirky hats and having flappy hands, it does actually involve physical health issues.

I think this heat wave needs to break before mumsnetters start murdering each other...

autistic people are less able to regulate body temp than non autistics.
Oh my goodness i didn't know that.

I ve had a very late life unofficial diagnosis that I'm Autistic, probably AuDhd and all the time I'm realising how Autism manifests itself.
I have always struggled tremendously in hot weather. .And I struggle when I do any form of exercise - my face goes as red as a beetroot.
Yet another MN thread that has been really informative and useful to me.
Thanks OP. And AzureCats for your post.

No it absolutely is NOT better than what you think of as "miserable" weather.
I presume you are not autistic? What therefore made you think you had a right to an opinion on how people who are autistic are experiencing this weather?

DS is 18 and autistic, never been able to handle the heat. We’ve had to invest in a air conditioning unit, tbf he doesn’t use it constantly but it helps to keep him cool.

DH and both my DDs are autistic. We’re all suffering but I think one of the extra challenges for them is reading their internal body signals and adapting their clothing, routines and eating habits before they overheat. DD1 is wearing thick sweatpants and Uggs, refusing to take her hoodie off on the tube and baking cakes FFS. It’s incredibly frustrating to watch but ridged routine is their safety net.

Yes. ASD and summer are often incompatible. The recent heat makes it even worse.

There are a few of us who will post about poor mental health and physical issues when summer hits. It’s like as soon as the sun comes out our bodies say it is time to stop functioning.

Autistic people are much more likely to have interception challenges and so find things like hot and cold harder to deal with.

No. I love winter. The cold, rain, and even ice and snow are great for my mental and
physical health. It is the exact opposite of miserable.

Yes lots of people will struggle due to having certain conditions that can affect their ability to regulate body temperature. Some people will find they struggle more with age too. For some very unfortunate people it can even lead to extreme heat exhaustion or death.

I'm ok, I've pretty much acclimatised, lucky me. I'm probably a small minority.

My point though wasn't about people with autism having less ability to regulate body temperature. It was specifically in relation to sensitivities. Much like feeling wet, hating the feel of rain, disliking having a shower might mean that feeling sweaty induces a similar feeling. Anything scratching the skin can drive one person to distraction, but some people with autism aren't just a bit irritated by it, it produces an effect on their nervous system that leads to a cascade of effects. Their ability to regulate their response to discomfort is is entirely different to a person without autism.

Although their is a link BTW autism, hyper mobility and disautonomia, which will effect your ability to regulate temperature.

That’s absolutely shocking kids shouldn’t be forced into classrooms this warm!

Well I didn't expect this to get so heated! I really was just looking for advice and perhaps some commiseration from other autistic people, so thank you to everyone who replied with some.

(Also, I really didn't mean to imply that non-autistic people aren't struggling, or that people can't struggle for other reasons! It's just a known symptom for autistic people to have poor interoception when it comes to temperature, and many have temperature regulation issues due to co-morbid conditions as PPs have said. I have year-round hayfever, eczema, and dysautonomia which contribute to my trouble with the heat, all of which are more common in autistic people.)

To answer some questions about what I'm doing to handle the heat so far:

• Keeping a bottle of water by my side at all times.
• Keeping an air cooler on and setting alarms to remind myself to switch out the ice.
• Surrounding myself with fans! So many fans.
• Using a cooling neck ring.
• Keeping the curtains pulled and windows closed when the air outside is warmer than the air inside.
• Wearing only lightweight t-shirts, shorts and skirts
• Sleeping with only my stretchy sensory sheet. It's not really working, in that I need more pressure than that to reliably relax, but at the moment it's better than overheating.
• Taking less of my as-needed beta-blockers to reduce their tendency to cause overheating. Sadly I can't skip a dose of my antidepressants, but working from home during the heatwave has cut my anxiety enough for me to skip the propranolol most days!
• Keeping stocked with cool, fresh food and snacks, especially for when it's too warm to eat proper meals.
• In the same vein, not cooking. The oven has been effectively neglected recently, it's been cold food and, if necessary, nothing more than the microwave.

I'm loving the suggestions for salty snacks, a spray-mister, and electrolyte drinks, I'll have to give those a try! And the recommendation for Uniqlo Airism shirts is well-timed, as I have some due to arrive tomorrow- I hope they can provide some relief.

Installation of ac was my best buy. Cost 1600£ for livingroom and my bedroom. Worth it.