Reasons I thought I may be autistic: Sensory Edition

In the process of my diagnosis, I elected to write a voluntary dissertation of 10,000+ words, in one non-stop 6-hour session, as to why I might be autistic. Guess the assessment wasn't really needed.

Last summer, on the waiting list for my autism assessment, I decided to sit down and write down as many reasons as I could about why I thought I might be autistic. I’m sure the bemused looks on the psychiatrists’ faces when I turned up with those thirteen pages in a binder defined the moment they telepathically agreed: “there’s no way in hell she isn’t on the spectrum”.

In my quest for discovering what on earth was making everything so bafflingly difficult - when everyone else just seemed to be getting on with it and not having nervous breakdowns every eighteen months - I found other peoples’ first-person accounts of their autistic experiences to be life-changing. So I thought I’d share mine.

The experiences below are by no means universal; the saying goes: “if you know one person with autism, you know one person with autism” - but I hope some may resonate with you and be helpful in your own journey.

This time, we’re talking about sensory experiences:

• Going outside alone requires noise-cancelling headphones and I find myself frustrated/distressed if I cannot travel with them; god forbid the battery runs out enroute to work

• Visiting the supermarket or a shopping centre will elicit visceral internal reactions if someone walks too close to me or happens to be suddenly in the corner of my eye - like a lightning bolt of adrenaline. I’ve always had an eerily sensitive nervous system where, if startled, I can ‘feel’ the adrenaline move to a certain part of my body (often my feet, which I’m assuming is related to the fight/flight response quite literally - my sister thinks this is hilarious, I do not - it feels dreadful)

• On days where I really can’t hack it, sunglasses are also needed - even though I get hyper aware of how bonkers I may look with huge sunglasses and huge headphones on

• The above reactions don’t necessarily occur every time I go outside. I often isolate for days on end and then emerge with a lot of energy (generally after having listened to some kind of empowering music, or maybe watched a film/TV show with a strong female lead), where I don’t necessarily experience these things immediately (until my energy wanes). This is definitely a factor as to why I think I’ve slipped under the radar, as I am always convinced that people think I’m shy and reserved, yet - despite my fear of doing things wrong and the effort I put into curating my outside persona - I am usually perceived as aloof or even arrogant. Because when I know what I’m talking about, I have absolutely no shyness at all. It’s a Jekyll & Hyde situation where I never know which version of myself will come out on a given day, which can be quite disarming to people who a) don’t know what’s going on b) only know you on an acquaintance level

• As a late-teen I went through a 6-month period of varied levels of derealisation - especially when it came to particularly sunny days - everything would seem too much and a bit hyperreal. It got so bad that I thought I was going through psychosis and suicidal ideation kicked in as I thought if I told anyone about it, I would be sectioned. I researched online and found out that it was in fact a severe symptom of anxiety - something I think I was riddled with at the time but now know I couldn’t register due to alexithymia. Knowing that I wasn’t losing it and just severely anxious helped to alleviate the ‘otherworldly’ ‘uncanny’ feelings and I eventually learned to talk myself out of it when those feelings arose

• Certain noises/textures are almost painful to experience - especially ice. I struggle to take things out of the freezer and tend not to use it for this reason. Just thinking about someone chewing an ice lolly right now is making me feel unwell

• Until I quit drinking and realised I might be autistic, I wanted to have children - but spending time with my niece (6 years old) very quickly depletes my energy, primarily due to the erratic noises that come out of tiny beings. Whenever I spend time at my sister’s house, I have to lie in bed after a couple hours of being around my niece, despite the fact I am very fond of her and do try to engage (but have no idea how to, unless it’s reading a book together or completing a puzzle). I've always had a really good imagination (at age 9 I wrote a story about luckily undigested mouse living in a cat’s stomach, as you do…), but unless it’s on paper, I struggle to conceptualise it, which I know is important in kids’ play

• At work drinks/social events - since I have gotten sober - I struggle to physically ‘hear’ conversations, especially if they are in a group, and, despite having plenty of opinions and sometimes being overly verbose in a 1-2-1 setting or a quiet group, I tend to just inanely smile and nod. Much of my masking is just laughing at what I think I should be laughing at, without engaging properly. This has probably made my struggles with socialising at large even worse as, with the combination of a ‘resting bitch face’, people don’t really know how to take me

• I’m very sensitive to temperature - never feel completely comfortable in any situation - always too hot or too cold. This can lead to sleep issues, especially if I can’t regulate my temperature, as I then get panicky which leads to a weird psychosomatic itching feeling all over my body 

• When particularly overwhelmed, this itching feeling kicks in regardless of the temperature around me. I’ve had times in stressful office jobs years ago where I’ve had to go to the toilet to scratch my scalp or skin to alleviate the feeling without people thinking I’m weird or have headlice or something… This has led to me accidentally marking my skin and sometimes creating bruises when particularly distressed

• I am very sensitive to scents - get immediately distressed and angry (but usually internalised) when I can smell something that isn’t pleasant. An example I can recall was where I caught a taxi in which someone had clearly vomited the night prior and the cabbie had tried to clean it up, but I was so tense and upset by the time I got out of the 10 minute journey - just from the lingering smell and its discomfort - that it impacted the rest of my day

• On a more positive note, there are a lot of pleasant experiences that my sensory sensitivities offer: I associate good smells/sounds/songs with memories and tend to live a lot of my life in nostalgia as a result of this (maybe that isn’t always so positive, but it helps when I’m dysregulated to think of calmer times)

Again, all to be taken with a pinch of salt insofar as true indicators of being autistic go - as we’re all individually weird and wonderful - but there’s one person’s sensory experience of their autism for you... hope it helps!

I’ve also written about childhood experiences that led me to believe I may be autistic.