While I have been trying to see the funny side and have shared memes about the horrid hot weather we’ve had in the UK over the last week, there is a very serious side to it for those of us who are #ActuallyAutistic.
 
As mentioned in this article “Heat Sensitivity in Autistic Individuals Explained“, “Heat sensitivity in people with autism is a tricky sensory issue. It is more than just not liking warm weather. It comes from the way their brains handle information about temperature. This can make them feel hot very quickly or, sometimes, less sensitive to heat.”
 
In my case, I am very overly sensitive to heat. It isn’t just a matter of eating an ice cream or having a cold drink to cool down, or having a cool shower or bath, because my ENTIRE body quite literally feels like it is on fire no matter what I do, and I absolutely HATE the sensation of it. This in turn leads to my having an autistic meltdown when I just can’t stand the heat or bear it any longer.
 

And this isn’t a recent thing, I’ve been like this with the heat all my life but until I was diagnosed as autistic in 2018 I had no idea why I struggled in the summer so much. I well remember the shame and humiliation at school when it was sports day and I was made to take part in stupid races like the sack race and the three legged race in the blistering heat, and given a detention and punished when I challenged the status quo and refused to do it. I also remember the shame and humiliation of literally being frog marched by my PE teacher on a cross country race in the middle of a heatwave at secondary school. By the time I got back I literally collapsed, only to be told by my teacher that I was “being dramatic” and that “it is only a bit of heat, you’re only acting up like this to get out of the cross country race adn sports,” and I was denied a drink of water when I asked for one. This is despite the fact that I could hardly breathe and I was bright scarlett in the face.

I can’t say that participation in sports days or cross country races has helped my education one iota, except to embarass and humilate me in front of others. Being made to do them by my teachers has added nothing whatsoever to my life. It is why I strongly believe that the education system needs massively overhauling and the one size fits all approach in schools needs to be abolished.

Throughout my ENTIRE life in the summer months I used to push myself massively. I would just “battle on” whenever it was hot, despite how it made me feel and despite the huge amount of sensory overload that I experienced. I would go to events, I would be in the office come what may and I would do meet ups regardless of how ill the heat made me feel, all because I wanted to ensure that others were happy without stopping to consider myself and the impact it was having on me.

But not any more. For example, as much as I hated not being able to go to a BBQ yesterday that my cousin had for her fiance’s 50th birthday, and as much as I hated having to pull out of going to two poetry events last week at Script Haven that I very much wanted to be at and where I was supposed to read some of my poetry, and despite the huge amount of FOMO (fear of missing out) that I had, I know 100% that it was the right decision for me to not go. I can’t tell you all the amount of times I see exciting things going on that are outdoors that I would LOVE to do, but I can’t say yes to them straight away as I need to check the weather forecast before each event, or I have to pack a military grade kit consisting of tons of items I need to take with me to help keep me cool. I can never be spontaneous in the summer, especially when it comes to outdoor events.

The hot weather also plays havoc with my digestive system and I never feel like eating much during a heatwave. I definitely can’t stand to eat any hot food, everything has to be cold and the best I can do is eat “picky bits” throughout the day, and even then I don’t want to eat much. Quite often I will say to my husband during hot weather, “Sorry but it is just picky bits for tea tonight,” and sometimes I don’t even feel like that so I say to him that it is a “get your own tea” kind of night.

And what about sleep? Thanks to my air con units which I could not do without I’m lucky enough to get some sleep which helps, but I feel SO drained from the moment I wake up because although I sleep,  the quality of my sleep is impacted from the heat. My routine is always massively disrupted as well, as someone who is #ActuallyAutistic I am a creature of habit and when my routine changes, I hate it. In the summer months, and especially when it is hot, my alarm goes off at 6.00am, I grab a coffee and have a quick catch up with my #BFF in California Dianna, then I am out of bed by 6.30am and out the door with my dog Poppy for her one walk of the day. We’re back by 7.00am, I then do any housework jobs that need doing before it gets too hot, have a cool shower and start my working day so I can stop early afternoon if I need to, and last week I cleared my calendar as much as I could.

And yet, by contrast, I have no problem at all with being cold, in fact, I much prefer it. I can put on extra layers, I can huddle up with my electric blanket over me, and I can turn the heating up as I’m very lucky to have solar energy so my bills are low even in the winter months as I’m generating alot of energy myself that way. But the heat? No thank you! It beggars belief that to cope in the heat I have a myriad of items on top of my 2 air conditioning units including several gel cooling mats that I keep in the fridge during the day and put in my bed at night that I sleep on top of, a neck fan, 2 x JML air cooler units, several portable fans, factor 50 sun cream and a collection of different wide brimmed hats. All this is definitely a neurodivergent/ADHD tax as I’ve had to spend good money on all this, so it really is no joke.

Some of my friends in the USA where they regularly have heatwaves, especially in Florida for example, look at me with bemusement and often say to me, “but it is just summer!” But here’s the thing, houses in the UK are built to keep the heat in, and we don’t have air conditioning in our homes as standard. I’m not the only one to think this, Stu of Stu’s Reviews on YouTube said the same thing in one of his videos where he reviewed the Dreo Turbopoly 508S fan, that houses in the UK aren’t built to withstand heatwaves and keep the heat in (suffice to say that 2 of the Dreo Turbopoly 508S fans are on order and arriving tomorrow, along with a newer and more powerful air con unit). In the USA houses aren’t built with bricks as much as ours are, and many have air conditioning units as standard. The way things are going with heatwave after heatwave here in the UK, air conditioning is going to become much more of a thing here.

I’ve travelled to hot countries and yet I haven’t suffered in them as much as I do here in the UK. I’ve been to Egypt and Las Vegas for example where although it was hot for sure, I could cope with it a bit better than I do here. But there is a big difference, they are desert climates. It is much cooler at night to the point that you have to wear a jacket sometimes which is bliss, but hot during the day. Here, the humidity is often off the charts along with the heat which makes it feel like you’re walking in an air fryer all the time. I absolutely know that I wouldn’t cope in any humid or tropical climates, so places like Thailand are definitely off my travel list.

Many have said to me, “but it’s summer, just get on with it,” or “it’s only a bit of heat, we don’t get much summer here in the UK,” but that “bit of heat” makes me feel SO unwell. My air conditioning units help somewhat, I am SO glad I invested in them as I cannot cope without them, but the moment I leave them and go outside my heat sensitivity goes into overdrive, it is like walking into a sauna with NO escape. Then add in the fact I suffer from debilitating hayfever every year in June without fail and going through the menopause? I don’t think I need to tell you how much that has impacted me when it comes to heat sensitivity.
 
This is my lived experience as someone who is #ActuallyAutistic and who has extreme heat sensitivity. I have written this in the hope that it will raise awareness of it, and raise awareness of how many of us who are #ActuallyAutistic suffer unspeakably during the summer months in the heat.
 

If you are reading this, please understand that those of us who are neurodivergent and have heat sensitivity aren’t being dramatic and we can’t just “get on with it” in the summer months. Heat sensitivity is real and it impacts us massively.

My call to arms is this – please be gentle with us, be kind and please understand just how much the heat impacts us. We can’t help it and all we want is for an end to the summer months, I for one am praying for a break to the heat and that it doesn’t get up to 39 degrees which is predicted here in the UK for mid-July. 

And finally, if you have children please don’t make them do anything in the heat if they don’t want to do it. I’m all for them getting outside more and away from their screens, and for them to be out in nature much more, but not in sweltering temperatures. If they don’t want to do PE outside when it is hot, talk to their teachers to see if there is any way they can do other exercise or activities that are indoors out of the heat. I dont want a single other child to be shamed and humiliated like I was when I was at school, it has stuck with me to this very day.

If you have heat sensitivity and you are reading this, I’d love to know how you cope with it. What things to do you do that help you keep cool? Drop me an email via hello@cybergeekgirl.co.uk, and let’s continue the conversation.