Summer of Accommodations: Heat Edition!
It's hot as mordor in Portland today, so let's talk about it!
Welcome to Healing is My Special Interest, the newsletter at the intersection of late-diagnosed neurodivergence and healing from high control environments. To continue on with the Summer of Accommodations theme, today we are tackling one that is extremely relevant to me today: heat sensitivity (and heat intolerance!). Thank you to everyone who supports this newsletter, and I can’t wait to hear from you in the comments :)
Summer of Accommodations: Heat Edition
Hello everyone!
I am writing to you from the first real heat wave of the summer in Portland, Oregon. It’s supposed to be 100 degrees today, which is a lot for our slice of the United States. I, like many people in Portland, do not have central A/C and when the temperatures climb so does my anxiety.
Part of that is because several members of my family (including myself) experience heat intolerance. Now, if you are like me you might read that sentence and dismiss it out of hand—heat sensitivity? What does that even mean? Everyone gets hot when it’s hot outside, and everyone just figures out how to survive it—right?
NOPE!
Some people truly are unable to tolerate the heat for a variety of reasons, and their body struggles to regulate its temperature. Heat intolerance can look like: headaches, dizziness, increased anxiety, malaise (!), nausea, excessive sweating, dehydration and more1.
It’s a serious thing that shouldn’t be brushed off, and some folks are more likely to experience heat intolerance, including autistic folks. One reason might be because we are already more likely to be sensitive to changes in our environment, and high heat definitely impacts our senses. Another reason is that many of the medications people take for anxiety/depression or other medical issues like high blood pressure can have a side effect of making people more sensitive to the heat. If you take SSRI’s like Zoloft or Lexapro, for instance, you should be aware that these can contribute to how your body is able to regulate its temperature in high heat and can lead to heat exhaustion and heat stroek2.
I never knew this about myself, I just knew that I got really overwhelmed emotionally when it was hot outside and I was ashamed of that. So, in the past when it got really hot in Portland, I would turn on the portable unit in my bedroom, huddle up on my bed, and miserably ruminate on how I was contributing to climate change by using my A/C3. Then I would spend some time thinking about how the power grid was probably going to go out anyways, so I shouldn’t get used to enjoying the cold air. And then I would spend some time thinking about how it was fire season, and worrying that we would have to evacuate somewhere soon. I would eventually leave my room and cook dinner in my hot, sweaty kitchen. My kids would complain about dinner and I would snap at them and go back to hiding in my room for an hour or two. And the whole cycle would continue on again, for days or weeks at a time.
This year, I am doing a lot better (but it’s still pretty hard). Here are a few ways I have learned to accommodate myself during the summer months. Make sure you let me know what your tips and tricks are down in the comments!
1). I understand and accept that I am prone to heat sensitivity.
This is the most important one! I now can understand that when I am overwhelmed by heat I tend to have internal meltdowns that look like existential crises and catastrophizing about the future. And due to having heat intolerance, I find high temperatures very overwhelming and triggering to my anxiety. Now that I know this, I can treat myself much more gently when I am having an internal meltdown due to the heat. I can take care of the meltdown without adding extra shame, and this is the most important accommodation I can give myself!
2). I find ways to minimize exposure to light / the sun
Some people experience light sensitivity along with heat sensitivity. As someone who has started to experience migraines more frequently—thanks to fracturing my face in January—I am unfortunately more aware of my light sensitivity than ever. Luckily there are a lot of tips and tricks to help with this one.
I can tell I am officially middle-aged because this is the summer of Wearing a Baseball Cap. I never let myself wear them before—maybe I thought baseball caps were for dudes4? Which is so silly and ridiculous, but here we are. I am officially team Baseball Hat and they really help with the glare, with not overheating my face, and in general makes it easier to face the outside world!
I am also middle-aged because I have transition lenses on my glasses and I LOVE it. I love it so dang much. I can go from inside to outside and not have to mess around with trying to find my prescription sunglasses (which I am always losing). I don’t care that people think they are nerdy, I think transition lenses are one of the best inventions to have ever been made and I will proudly flaunt them out in public. 🙂They helps my headaches and my anxiety, which is honestly pretty priceless.
I am also learning to shift my rhythms and schedule when it is really hot. We joke that my oldest child (who has heat intolerance) has the rhythms of an Italian grandma—they love to have a nice luxurious nap in the middle of a hot day and stay up late into the night with a burst of creative energy5. I don’t have that burst of energy at night, but I am realizing that the typical American schedule I have been operating under simply doesn’t work during the hot weeks! I am letting my body and my brain slow down in the afternoons and evenings partially because that is all I can handle, and I am learning to be ok with the lack of productivity.
3). Find ways to cool down
This one is pretty obvious, right? But sometimes we need permission from a stranger on the internet to just find some ways to cool down our overheated nervous systems.
If you have been reading this newsletter for a hot minute (ha!), you know I am a huge advocate of cold therapy. You can go as big or as small as you want with this one : anything from a small ice pack on your chest all the way to swimming in cold water. Whatever you do, a bit of cold can really help your body as it is struggling to regulate its temperature, and it also really helps with anxiety.
For my family, we have a janky above-ground pool we put up in the summer months and it has saved our butts (and our sanity). There are zero public outdoor pools anywhere near us and that really sucks, but sometimes crowded pools are not the vibe for autistics anyway. The water mostly stays quite cold and I rely on it to help get me and the kids through the hot afternoons. If you don’t have the time energy money for a larger pool, the small ones (inflatable or plastic) work just as well for cooling off. Or just take a cold shower or bath or dunk your face in a bowl full of ice water! There are truly so many options for cold water therapy.
We also recently bought an ice pack that goes around the neck and it is really helpful for short outings like going to the farmers market (but the cold benefits do not last for more than 30 minutes to an hour)6. It was hard for me to purchase this neck thing but investing in accommodations should be a priority for autistic people and anyone who experiences heat sensitivity and heat intolerance. Some people buy little fans, spray misters, neck wraps . . . let me know if you have a product or a trick that really works for you in the comments!
4). Stay hydrated
Another obvious one, but it still needs to be said. Figure out what ways work best for you to drink water and DO IT. One accommodation I have made for myself and my family is investing in good water bottles that keep the water ice cold. Think hydroflask or anything insulated -- yes, they are expensive, but they also keep ice from melting for 24+ hours! Drinking cold ice water has so many health benefits, and helps to regulate the nervous system right away.
I have been doing a bit of learning about the MTHFR gene mutation that occurs in a lot of people who are autistic and ADHD and it impacts how the body absorbs nutrients and even hydration7. We knew about this gene mutation due to our oldest child, and they are on MTHFR specific supplements that help their body actually absorb the OTHER supplements they take. Without them, some of the vitamins and minerals they are taking simply wouldn’t be absorbed into their bloodstream. I personally have not been tested for the MTHFR gene mutation myself, but as a precaution I am also taking the necessary supplements along with being more vigilant about taking vitamins and . . . it seems to help? I am not an expert and I do not make any money off of telling people to buy supplements, so take all of this advice with a grain of salt!
I take the MTHF 5mg supplement from Thorne and for my other vitamins I try and get ones that are methalyated (and therefore easier to absorb? IDK I’m not a scientist!). Weirdly enough, since I try to stay out of the sun I still need to keep up with the vitamin D and C and B and all of those things, and if I’m going to swallow a bunch of pills I want to make sure my body is actually absorbing them!
This also comes back to hydration. If you have the MTHFR gene mutation or suspect you do, it can also impact how your body is able to absorb water. This post is a good explanation and has some tricks for helping boost the possibilities of hydration. My favorite trick is adding a little bit of lime or lemon to your water and bonus points—it tastes good AND you feel fancy as well. And why not help ensure that your body actually absorbs all the things you are giving it to help your brain and body???
I also notice during hotter periods of the year that caffeine and alcohol really seem to impact me and this makes sense since they both contribute to dehydration—so I try to stay away from those (unless I’m on vacation or something).
5). Avoid Overstimulation
In my autistic math mind, I know that adding heat to any event or outing or task makes it 4x more difficult. I am much more likely to get overstimulated, cranky, anxious, hopeless, catastrophic, etc. when I am feeling uncomfortably warm in my own skin. So, I have to factor in this reality when I am planning anything. In Portland, for instance, many of the big Pride events happen in July. I know that I cannot really handle a big event outdoors with tons of people PLUS heat. So I don’t go, or I attend only if the weather is something that I can handle.
On days like today when it is really hot, I have to plan out how to spend my energy. Can I work on STRONGWILLED stuff all morning, entertain my kids all afternoon, then cook dinner in a hot kitchen? NOPE! That is a recipe for disaster (and a lot of chronic pain for me). So I shuffle things around, slow down on the work, and keep the fridge stocked with cold watermelon.
The world is already so overstimulating to autistic people, and extreme temperatures only add to this reality. During hot weather I cannot be very engrossed on social media or world news, and my body literally feels like it is shutting down and going into survival mode. Keeping me and my kids and pets safe and cool and as comfortable as we can be becomes my priority, and I don’t feel bad about that at all. It simply is my reality.
6). Ask for accommodations (or just give them to yourself)
Out with friends? Tell them you want to eat somewhere indoors with air conditioning! Make a plan to go for a hike but the weather is too hot? Reschedule it! Want to hide in your room and binge-watch an anime show until September? Go for it! Have a hard time sleeping in the heat? Give yourself a break and find ways to rest during the day as much as you can. There is this idea that sun = energy, but that simply isn’t true for everyone.
Some people genuinely love summer and warmth and heat and others find it extremely taxing on their bodies, nervous system, and mental health. The sooner we can all recognize this, the better off we will all be. For people with heat intolerance and heat sensitivity, hot weather is something that needs to be taken seriously for physical and mental health impacts.
Lastly, I know that not everyone reading this is experiencing hot weather right now, but for those that are, I hope you are all staying as cool as you possibly can. I know that for myself, when the temperatures skyrocket in my own city I get very concerned about the unhoused and how they are faring. I suggest finding a mutual aid group to support during heat waves in your own city (if you live in Portland, there is a fabulous one called The Sweaty Buttcrack Collective that gets people into hotel rooms during heat waves).
For now I’m curious to know: does hot weather impact you? What are some accommodations you have given to yourself, or asked for? What are the tips and tricks you have picked up over the years? Let’s share our wisdom in the comments!
Here is a short little article on heat intolerance: https://www.healthline.com/health/heat-intolerance
When I am using my portable A/C unit I always imagine that Greta Thunberg is very, very disappointed in me. Those old evangelical habits die hard!
gendered clothing norms are so, so silly.
In case anyone wants to watch some amazing youtube videos that are a slice-of-life with an Italian grandma, I highly recommend this one:
This is the ice pack thing we bought, I am sorry to say it is from Amazon! Also I don’t get any money if you buy it from this link, but I will say it is super awesome (and freezes really quickly).
There is a lot of information on the internet about the MTRFR gene (you can remember the name of it by saying to yourself “mother fucker!”) but basically it impacts how your body absorbs amino acids and folates like B9. Again, I’m not a doctor, just somebody who has tried a lot of shit to help their child feel better! Do all the normal research / talking to your doctor that you would normally do in these situations :)
I feel SO SEEN in this essay, thank you! I've always known that heat bothers me (called it "heat rage"), but until the ND diagnosis, I just had all the shame about not being good at life. When I was 22, long before the diagnosis, a housemate watched me have a breakdown over something simple, and when I apologized later (I hadn't had the breakdown AT him, but still felt I needed to apologize), he said, "Oh I get that too. What I do is drink more water and move more slowly." And that advice had gotten me through SO MUCH. Just starting to notice and acknowledge it was a huge step - affirming that this was my reality, and adjusting to it as if it was a need, because it was. I got into the habit of saying to myself, when I noticed that I was approaching heat rage, "Right. I need to expect less of myself right now. Go drink some water and grab an ice pack and lay down. This will wait."
Also we had no AC at this time and I was pretty broke, so when I was home, I would just put 3-4 ice cubes in a kerchief or thin scarf and tie it around my neck, and drape a towel over my shoulders to catch the melt. Then I'd refill when needed. I always kept multiple ice cube trays (4?) Filled at a time for exactly occasions like these.
The other big accomodation is allowing myself to not do things during the afternoon. Even if the heat doesn't break at dusk, less light means less stimulation. I got a head lamp for camping and use it to do night gardening. I make picknic style food late at night so we have grab and go meals when it is still hot and light out.
I eat so many sandwiches and salads.