The cold always bothered me anyway…

I lied. Today is not Monday.

However, I am consoling myself in my failure, telling myself that what should have been my Thursday post was two days late, so what should have been my Monday post is one day late. I am gradually making up the days until this Thursday’s post is actually delivered on an actual Thursday. Like the way the council does the bins after a public holiday. Just think of me as the refuse collection service of fabulous queer autistic blogging.

So, putting that marvellous analogy to one side, I would like to discuss something I recently discovered about myself (that I had somehow managed to miss for twenty-five years.

No, not that I’m clearly absolutely unable to stick to self-imposed deadlines.

I am hypersensitive to the cold.

It’s not that I hadn’t realised that I was cold. I always knew that cold was my enemy. I am the person that colleagues, friends and family walk past exclaiming “how are you still wearing a jacket/cardigan/dressing gown/pikachu onesie?!” I am the one who vetos any suggestion that we get one of the outside seats when eating out; the one who will whine like a small child at being outside for too long because my toes are falling off; the one will accidentally cost her family a fortune because she thinks nothing of turning the heating up so far that lava begins to seep through the walls.

I’ve always known I feel the cold. I had just never thought about in terms of those wonderful labels that started clicking into place once I got my diagnosis. It had always remained one of those abstract quirks that was annoying, but never particularly overthought in my mind.

It wasn’t even a creeping realisation that this may be an autistic thing. It was sudden, like I had been slapped in the face with a wet fish. A very, very cold wet fish.

At work, I sit in the main reception. That is where I am based full time (apart from breaks, lunch, and, obviously, hometime), so, during the year, I get the full force of any weather that happens to be headed our way. Usually, it can be mitigated with good old fashioned 21st century heating. However, during one particularly arctic snap in the middle of April, I met my icy match.

My workplace strives to be as environmentally friendly as it possibly can, and, as such, when April rolled around the main heating was switched off – in essence, going into its hibernation during the warmer months, all ready to wake up and save us all in October.

The only problem was, on this occasion, it was not April weather.

It was freezing.

The cold cut me right through to my core – I could feel it like an icy grip in my bones, snaking up through my spine and enveloping my brain in a mist of freezing fuzziness. My colleagues were worried about me. I was barely firing on 25% of my cylinders; I was shaking; I was pale; and, to be honest, my closest colleague was concerned at how badly I was reacting to being that cold. Up until that point, I had always perceived myself as having an only-slightly-stronger-than-average reaction to cold temperatures. But, when it was pointed out to me by an outside person how violent my body was responding in contrast to everyone else – they were cold, that’s true, but they weren’t anywhere near that cold.

That was when I started to think that it was something more.

I have always described my sensory sensitivities in terms of overload: there’s too much noise and I can’t filter it out, there’s too much light and I can’t filter it out, there’s too many emotions and I can’t filter them out. That is how I experience my sensory overload. I can’t speak for the whole autistic community, but I do know that I have bonded with many other autistic people over this common experience.

And when I started to think about it, the way I was experiencing this cold was exactly the same.

In fact, I find it so difficult to filter out cold temperatures that I will swaddle myself in blankets and dressing gowns to the detriment of my own health – in the same way that I am hypersensitive to cold, I am hyposensitive to the heat and struggle to recognise when I am overheating. I will wear long pyjamas with a fluffy blanket in the middle of August, and I won’t realise that I should rethink this until I try to stand up and find myself feeling dizzy.

Being the intrepid explorer of the internet that I am, my first port of call once I had recovered from the cold (and even after the heat went back on, it seemed to take hours before the arctic chill was chased from my bone marrow) was to have a look and see if there were any other people experiencing this same thing. I struggled to find any articles in the same depth as I had seen on the more ‘traditional’ elements of sensory overload (sound, sight, taste, smell etc.), but, once again, I found a discussion on Wrong Planet in which I found myself nodding frantically in recognition. 

It seemed I was not alone in this. And that drew back the curtain even more, granting even more clarity to a situation that was becoming clearer and clearer.

I also found two other articles/posts which mentioned hyper/hyposensitivity: this one, using the refusal of an autistic child to wear a coat as a basis, and this one which includes temperature on its list of sensory sensitivities that may be experience.

(Please be aware that these links focus almost entirely on autistic children, and are aimed at parents of autistic children rather than autistic individuals themselves. I have my own issues with this, but this is neither the time nor the place – for discussion of the issue for autistic people by autistic people, the Wrong Planet link is the way to go.)

The impact of this sudden understanding, of suddenly having clarity on something that I had endured but not really considered for twenty-five years, is not trivial. In a flash, I was able to speak to my work coach and my line manager and ensure that steps were put in place to avoid such a situation happening again – at that moment, it was on my record that the extreme discomfort and distress I experience in the cold was a sensory sensitivity, and in that way I could request reasonable adjustment to make sure I could do my work in the best possible environment. For anyone who has been in a position of not having those adjustments, however tiny, in place, this is a massive thing. Not just massive physically, but emotionally. I felt safe; I felt that I didn’t have to be afraid of being dragged into a situation where I could not function to the standards I hold myself to in the work environment.

That is everything. 

This is why diagnosis is so important. I have had people ask me why I pursued an assessment for autism so vigorously – why did I kick and scream and fight for it, why was it so important, after twenty-five years, to have that label slapped on me? What different did it make? What would it change?

It changed everything.

Even if the support was not automatically available, and many more fights were to come, I came to an understanding of myself. The things that I had quietly accepted but not understood began to unravel and knit back together into a pattern that made sense. I knew myself in a way that I had not known myself before. And now that I finally knew myself, I could also begin the journey towards finding out exactly what it was that I needed to live my best possible life.

This is why I will continue to fight for the importance of accessible diagnosis – particularly to adults, particularly to adult women. We deserve to understand ourselves enough to work out what we need. We deserve to know ourselves confidently enough to be able to ask for what we need – we deserve to have a strong enough grip on our own selves to stamp our feet and demand that we are treated with the respect and support that we deserve.

This was just one realisation, about one sensory sensitivity, about one aspect of myself that I had previously overlooked.  But it is about so much more than the cold.

It’s about being able to arm myself with the tools to keep myself warm.

Author: QueerlyAutistic
Erin Ekins is a queer autistic writer, speaker and attempter of activism. She has an interest in all areas of autistic social justice, but has a particular passion for improving understanding and acceptance of the intersection of autism and queerness. She runs the blog and is the author of the upcoming book 'Queerly Autistic: The Ultimate Guide for LGBTQIA+ Teens on the Spectrum'. By day, she works in campaigning and influencing at a disability related charity, but, by night, she is inhabits a busy space between angry internet person and overly-excited fangirl.

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