Neurodiversity, high sensitivity, and autism spectrum disorder

By popular (?) request, here is my personal essay about neurodiversity that was also included in my March newsletter.

Disclaimer: I will primarily be discussing ASD in the low support needs category – previously referred to as “high functioning” and/or Asperger’s, as that’s where I fit in and it’s what I know most about. The autism spectrum is very diverse, and exactly that – a spectrum. If you’ve met one autistic person, you’ve met one autistic person – as the saying goes.

I have long known that I am an HSP (highly sensitive person), which – like autism – is a type of neurodiversity, and something you are born with, that you will always have. Meaning my nervous system works differently than it does for a neurotypical person. I process and feel things more deeply and slowly.

Some common traits for HSPs are:

Having a vivid imagination and rich inner life
Being deeply moved by arts (visual arts, music, writing ++)
Being highly empathetic, attuned to others, sensing other people’s needs and knowing what to do to help them and make them comfortable (often the friend that is relied upon as a confidant)
Get overwhelmed by sensory input such as (loud) noises, (strong) scents, (bright) lights…
Because of these previous two points, HSPs generally need quite a lot of downtime/alone time. Because we take in so much stimuli from our surroundings, we need time to process, unwind and let it go
Questioning the world, our place in it, seeking a spiritual path/meaning
Having a low tolerance for violence (in media and in real life) and cruelty
Getting rattled by pressure, having too much or too many things to do
Feeling physically unwell during arguments or conflicts

Some of these traits definitely overlap with ASD (autism spectrum disorder). The problem is that up until quite recently, being highly empathetic was seen as antithetic to autism, because the original and outdated definition of autism was largely based on white cishet males. Think Sheldon from The Big Bang Theory or Sherlock from BBC’s Sherlock. Extremely intelligent, arrogant, eidetic memory, socially clueless and more or less devoid of empathy. And there are autistic individuals that fit such characteristics – more or less. But there’s a vast world of diverse autistics out there that meet the official criteria to a large extent and are still dismissed or overlooked. These people are mostly women (or trans/gender-nonconforming people).

Common traits of ASD that don’t necessarily overlap with HSP:

Taking things literally (potentially having trouble with hyperbole, sarcasm or figures of speech)
Stimming (see more info below)
Inability to lie and difficulty spotting disingenuousness in others, taking people at their word
Being especially interested in facts, figures, statistics
Having “special interest” subjects that they always want to talk about, not picking up on social cues as to when others are bored with hearing about their special interest (often knowing obscure information or data)
Difficulty reading facial expressions and body language in general (though Dr Price’s book – Unmasking Autism – states that from around the age of 30, autistic people have often caught up to neurotypicals when it comes to reading facial expressions – so it’s not necessarily that it can’t be done, it just takes longer to learn)
Not being able to express how they feel, and difficulty expressing empathy to others (note that does not mean autistic people do not feel empathy)
Need for strict routines and becoming easily upset by any changes to said routines
Repetition: amongst other things eating the same food(s) every day, watching the same shows and movies over and over, reading the same books over and over, listening to the same song on repeat

Stimming

Stimming is self-stimulatory behaviour, and all humans do this to some extent. Common autistic stims are rocking and hand flapping, but stimming is basically any repetitive behaviours or movements such as biting your nails, twirling your hair, rubbing your thumb over the palm of your hand, using fidget toys, bouncing your leg – you name it. Autistic people stim to help regulate intense emotions and sensations, and to help focus, but also because it feels nice or pleasurable. See more in the linked article under further reading.

The female phenotype

The female phenotype of autism suggests that autism presents slightly differently for women or AFABs (people assigned female at birth) than it does for men. For one, women on the spectrum tend to be more interested in social interaction, and are also generally more socially aware/capable. Their stims tend to be less noticeable, and any antisocial behaviours are often dismissed as the person just being shy. They also tend to have more varied and socially acceptable “special interests” that change/evolve over time. While you may think of the typical male autistic as being obsessed with trains, facts, figures, or a certain scientific discipline, female phenotype autistics may have a special interest in one or more artistic disciplines, fashion or makeup – things that girls are “supposed to” be interested in.

Because female autistics often don’t fit the criteria in the DSM (Diagnostic and Statistical Manual of Mental Disorders), they are also often misdiagnosed with personality disorders (like borderline or bipolar), depression, anxiety or OCD. Not that you can’t have both, of course. In fact, OCD, ADHD, eating disorders, IBS and anxiety often go hand in hand with ASD. But it certainly muddies the waters, and can make it hard both for professionals and for AFABs themselves to discover if they are actually autistic.

Masked autism

I was gifted the book Unmasking Autism by Dr Devon Price by my brother for my birthday last month, and I found it very interesting.

As I understand it, Dr Price basically argues that there isn’t really a big difference between men and women with autism, it’s more that women (and trans/gender-nonconforming people) do a lot more masking, because we learn early on what is expected and socially acceptable behaviour for girls.

Masking is exactly what it sounds like. Putting on a mask of socially acceptable traits and behaviours in order to hide or tone down neurodivergence, in order to fit in to a neurotypical world.

Naturally, not being able to be yourself, not getting enough time to unwind or even process information, has consequences for your health and can ultimately lead to autistic burnout. An autistic burnout differs from a neurotypical one in several ways. Firstly, autistics tend to get burned out due to the pressures of fitting into a neurotypical world rather than stress related to their actual job. This was the case for me. My job was not stressful, but coping with the overstimulation of an open office, multitasking and a rush hour commute was what caused most of my stress. Secondly, they tend to take longer to recover from, and sometimes people will never fully recover. They can also lead to temporary breakdown of speech and executive functioning (planning ahead, following multiple steps, being able to stay focused…). Personally I had several episodes of just standing on the street or in my home and not knowing what I was doing or even really where I was. A simple trip to the supermarket could cause stress to the point I was afraid I would collapse, even if the shop wasn’t busy.

Autistic people who mask are also more prone to substance abuse (alcohol can dull sensitivity and make it easier to make small talk for instance), disordered eating (gives a sense of control and regularity, easy ways to define worth and goals), detachment (a solution to feeling too much or too strongly can be to push those feelings away) and compulsive people-pleasing (lowers risk of conflict, people raising their voice, makes it easier to feel like you are fitting in).

There’s still a lot of stigma and misinformation around ASD, and letting go of the mask entirely can be a daunting thought. But I think it’s important to recognise when you are masking, why, and what the cost versus benefit is. Dr Price’s book is a good starting point (also for those wanting to learn more about ASD in general).

HSP profile of autism – are all HSPs actually autistic?

I’m not sure, and I don’t think research is either. Based on my reading and my personal experience I would say that though all autistics are sensitive to stimuli, they will not always display the heightened empathy of HSPs (though they might still carry it inside them), may have more problems with social skills, and may be more prone to obsessions/”special interests”. So I would come down on the side of “not all HSPs are autistic”, as there is more to being highly sensitive than sensitivity to stimuli.

Some emerging research (see link in further reading) claims that HSP is simply a “flavour” of autism, and should be seen under the same umbrella. I keep seeing the claim that Elaine Aron (the psychologist who discovered the HSP trait) misdiagnosed her family members as being HSP while it later turned out they were autistic, but I haven’t been able to find a proper source for this claim. Personally I think it’s early days, and I’m not sure there’s a need for this kind of definition. What I do think there is a need for is additional research, publicly available information, acceptance, and providing people who are HSP, have ASD or both with the tools they need to learn about themselves and thrive in life.

Neurodiversity and me

I score 25 out of 27 on the official HSP test (see link under “further reading” at the bottom of this section). I don’t consider myself particularly sensitive to caffeine and enjoy a cup or two of strong, black coffee every morning. I also don’t think I’m overly sensitive to violence in movies – to certain themes (mainly child, animal or sexual abuse), absolutely, but not violence in general. This has not always been the case. I was extremely sensitive as a child, and I remember for instance being traumatised by a PSA on telly for wearing your seatbelt when I was about 7. It showed a child sitting in the middle of the back seat without a seatbelt, and then the driver had to make an abrupt stop, and the child was thrown through the windshield. Traumatising, right? Right. Except at the point that the child was being hurled through the screen, it was very obvious that it was in fact a dummy and not a real live person (in my memory it had three thick strands of rope as stand-ins for hair, and was otherwise just your basic crash test dummy). And yet, I had to hide whenever it came on TV.

Sometimes I mourn that sensitive little girl, who felt ecstatic happiness at the simple pleasure of swinging on her swing, or of seeing a film in the cinema for the very first time, who cried when she finally managed to catch a butterfly and accidentally touched its wing and the colours came off, who had conversations with birds and a whole make-believe country with its own language. But I’m not sure it’s possible to go through life as an adult with that kind of sensitivity – at least it would be very exhausting. In this case I wouldn’t consider it masking as much as “growing up”. Plenty of children see things adults don’t, have imaginary friends, are super sensitive, and then they grow out of it – more or less.

I do recognise myself in masking behaviours as an adult, though, and I believe it massively contributed to my burnout in 2018, as touched upon above. At that time I’d been working an (open) office job for close to 10 years (same company, different positions), and I had had to do a lot of masking just to cope with work, and life in general. There’s the constant noise of an open office, for starters, there’s the pressure of multitasking and having all sorts of alerts pop up on your screen – chats, emails, reminders, what have you. There’s the meetings… The never-ending meetings where maybe one useful thing is said, but then there ends up being a lengthy email discussion about it afterwards anyway (whyyyy?). There’s the uncomfortable lighting, the uncomfortable climate (usually too cold, dry, and causing static and the need to constantly apply lip balm and hand cream), the social niceties that must be observed. The smells of all kinds of food, perfumes, BO… The guy who keeps sucking his teeth. The boss who wants you to do things a certain way that are inconvenient to you and gives no reason why. And don’t even get me started on the commute and taking the train in rush hour.

But I soldiered on, because *Moriarity voice*: That’s what people DO! Except that for me it had serious consequences for my health. I pushed myself so hard I developed a heart condition (which has thankfully disappeared again since changing my life around).

Fortunately I had already done a lot of work on accepting and learning about myself – in and out of therapy, so when push came to shove I realised that I couldn’t continue living like I was, and that that was OK, and it didn’t mean I was lazy or a wuss.

So, if high sensitivity fits me like a glove, why do I still think I’m autistic? I have certain challenges or idiosyncrasies that don’t seem to fit with typical HSP traits and that I’ve never quite been able to explain or understand until I considered that I might also be autistic. Such as:

While I consider myself very much an introvert, I do like people and being social (just not all the time or in larger groups), but it takes a toll on me beyond that of being an introvert – I find it very stressful and awkward to make small talk and am constantly worried I’m saying the wrong thing. I normally manage OK, but it takes effort not to say something weird or direct or simply run away.
I have auditory processing issues. I do not have diminished hearing (though I do have tinnitus – which apparently is more common in autistic than allistic people) – in fact I can often hear things others can’t, or that others filter out automatically, like electrical humming or distant alarms. However, I find it very difficult to hear what someone is saying if there’s background noise (a restaurant, concert, or even just a busy street). I find it hard to watch TV or movies without subtitles, even in my native languages. I also have trouble specifically with Dutch. Now this has puzzled me for a while, because I’ve lived here for almost 15 years, I’ve taken Dutch exams and consider myself relatively fluent in the language, but when someone speaks to me randomly and/or if they are a stranger, I often have trouble parsing what they’re saying. And I think it’s related to this auditory processing issue. Dutch is simply a language that is hard for me to parse if people mumble a bit, or I don’t know their voice. It sounds muddier to me than the other languages I know. This is an instance in which I continue to mask by pretending I did hear what people said or by trying to stay in the background of a group conversation, because I find it embarrassing to keep asking people what they said. Particularly because they jump to the conclusion that my Dutch comprehension is lacking, which is not strictly speaking the case (and which makes me feel stupid and like I’m not fitting in).
I am unable to think on my feet and have difficulty reacting instinctively. I once did a workshop where I found out (to my total lack of surprise) that my fight or flight response is “freeze”. The problem is I need more time to respond and process, which again makes me feel a bit stupid. This is certainly something that can be helped to some extent, and I feel like taking a self-defence class was empowering and helped me get in touch with my natural instincts. But generally I need a lot of time to analyse a situation, weigh pros and cons and think about potential outcomes before I react.
During arguments I have a tendency to shut down. People are talking too much or too loudly and throwing way too much emotion my way and I can’t deal with it all at once. I am the person who writes a letter or email after the fact – maybe even the next day – explaining my thoughts and my side of the story.
Although I have gut instincts it’s hard for me to trust or follow them, because I’m not sure what’s an actual gut instinct or what is just me overreacting to normal stimuli because my nervous system made a boo-boo.
I am uncoordinated AF. I am actually a decent dancer if left to my own devices and just following the music and how it makes me feel (and I love dancing). But try to teach me certain steps? Forget about it. I’ll be a tangle of arms and legs on the floor in no time. I also often bump into things and frequently have bruises I don’t remember how I got. And as a child I was terrible at almost any sport, or really any physical activity. I still remember vividly cowering in fear as that volleyball was coming right at me.
Stimming: as a child I bit my nails (common), sucked my thumb (common), twirled my hair (common – but perhaps having your mum cut your finger out of your fringe because it was stuck was less so?), and did this thing with my tongue where I would stick it out of my mouth and move it rapidly from side to side (less common…). I also had a made-up word for when I was really happy and energetic, and then I would shout my happy word while jumping around. As an adult I don’t do any of these things, but have almost without noticing moved on to more socially acceptable or at least less obvious methods of stimming. Flicking/stroking my nails or pressing the edge of my nails against my fingertips is a big one for me, and I do this almost constantly when not using my hands. Picking on any scabs or bumps on my skin is another. I need things to be smooth. And I sometimes wake in the middle of the night with my arms straight up in the air and the fingers of one arm scratching down the side of the other (I actually just found a thread about this exact same behaviour on an autism subreddit and am unreasonably excited by the fact that other people on the spectrum do this weird and specific thing).
Anxiety. OK, hear me out. Around 2014-2015 I was having a lot of trouble sleeping and having anxiety attacks, and I went back to therapy. Hey says my therapist, I think you’re an HSP (correct). She also diagnosed me with generalised anxiety disorder. That may or may not be correct. Don’t get me wrong, I am an above averagely anxious person, and spend no small amount of time imagining all sorts of dire scenarios. But, the actual anxiety attacks I had I could never connect with any specific feeling or event. They would always come at night while I lay in bed – when I let myself relax. And in hindsight (this was still smack dab in the middle of my office job), I think it might just have been a way for my body to discharge all that stimuli I’d had to deal with through the day, week, year… I actually only really started to get to grips with these attacks once I accepted that my body was just reacting to pent-up stress for whatever reason, whether or not I could see it, whether or not I agreed there was a good reason for it. I would start talking to my body, and say things like “yes, there’s been a lot going on, and I understand and accept that you are stressed out and you need to release this stress”, and the attacks got more manageable. And not for nothing, but I’ve barely had an attack since I left my office job. Not to say that my life is now perfect and challenge free – there’s a different set of challenges, but they don’t go so much counter to my personality and sensitivity.
While I’m not one of those people who will only eat buttered noodles, I was definitely that child. Anything with a hint of spice, garlic, or pepper was out. Anything heavy on fibre or grainy was also challenging. The only cheese I would eat was cheddar (to be fair, cheddar is an awesome cheese). I would rather go hungry than eat something I didn’t like. So, I was hungry a lot. I’m not implying my mother underfed me (though I did think she was a witch who was trying to poison me, but that is perhaps a different tale better left for another time) – she would let me have something else to eat if I had three bites of the food I didn’t like. The problem is that for me, eating something I genuinely don’t like makes me physically sick. Like it might make me throw up. At the very least I’ll be queasy and uncomfortable the rest of the day. So sometimes I simply preferred to feel hungry. I’m still very sensitive to food. Except now I will generally eat anything and love variation and trying new things. My problem as an adult is that my stomach is an unpredictable mofo. One day it can be like “yeah, give me some of that chili, that shit is delicious!” and then one or two days later it’ll be like “Chili? Are you kidding me? The texture and flavour of those beans and that rice is killing me, and who thought putting corn in anything was a good idea?” You get my drift. Which makes it very hard for me to plan ahead.
I get easily stressed out if I have to go to an event and I don’t know what to expect. It’s particularly important for me to know the duration of an event and how and when I can leave. If I don’t have an escape plan, I feel trapped and can easily start to panic.
As a teenager and in my early twenties I was rather more outgoing than I am now, but I’d still abruptly reach my limit for social interaction, and would often leave a party or night out without saying goodbye to anyone (this was also due to a fear of being convinced to stay if I made the rounds to say goodbye – I’ve always had a hard time saying no). I’d text someone after I’d already left to let them know and that I was safe. Normally I’d walk home because I needed time and quiet to process the evening. Sometimes that meant I was walking for an hour or two in the North Norwegian winter, but I didn’t mind.
I have a steady rotation of TV shows (sitcoms and dramedies mostly) that I rewatch, and to a lesser extent movies and books that also go on repeat. I often relate to people by quoting pop culture references and feel immediately bonded to someone who is also super into something I like. In fact I met my partner of 16+ years due to our mutual love of Friends. We still communicate in Friends quotes (not exclusively…). I find it comforting and relaxing to know what’s coming, and it feels like visiting with old friends.
If someone says something that reminds me of a quote or a song, it’s difficult for me to not respond with the quote or song. It’s also hard to keep myself from correcting someone if they misquote something – I tend to remember quotes from my favourite things verbatim.
I have trouble with lying. Even white lies to tell people they look nice or their painting is good when I don’t think so. Not saying I don’t do that, because I know it’s the social convention, and I want people to feel well – but it always takes me a bit of effort and I’m always afraid I’m going to be “found out”. My partner says he can tell when I don’t like a gift, despite my best efforts to camouflage it.
Related to the previous point I tend to take people at their word. I definitely understand and detect sarcasm, but if someone is being disingenuous, has ulterior motives, or is just “being polite” (asking you how you are but not wanting an honest answer), I tend not to pick up on that. I have no tolerance for scheming and talking behind someone’s back.
While it is commonly said that autistic people don’t get sarcasm and are very literal, it is in fact also the case that some autistic people are very sarcastic and more than averagely aware of linguistic ambiguity, double entendres and puns. I fall into this latter category, and have had to tone down my sarcasm and pointing out puns, double meanings and ambiguity because it starts to annoy people.
Sometimes stimuli like noises, scents and lights, can be physically painful. I didn’t even know this was a thing until reading Unmasking Autism. I mean, I did, because I experience it, but I’ve learnt to ignore it. I have a tendency to say “ow!” when there’s a loud, unexpected noise. But I’ve been conditioned to think that it doesn’t actually hurt, it’s just startling. Whereas in reality it can be both. Also strong perfumes/artificial scents hurt my throat. And I mean if someone is wearing them at a nearby table, not if I’m wearing a scent myself – which I rarely do because I’m so sensitive to them. I do like scents and perfumes though, I just have to be very picky about what I or my partner wear.

So, you might be asking yourself, if all of these many many things (which isn’t even an exhaustive list) can be signs of autism, how come I didn’t see it sooner, or how come I still function “normally”?

As to the first point, apart from having gotten the wrong end of the stick when it comes to autism much of my life, there are also a number of common autistic traits I don’t relate to. I have no problem with eye contact (though yes it can be intense at times, just not to the point where I don’t want to have it) or touch, I most certainly don’t have a flat voice (an old school teacher remembered me many years later as one of the few students she’d had that could pick up an unknown text and read it with feeling), I don’t have a good memory and am not particularly interested in facts or numbers (I’ve always been more of a language oriented person and bad at math), nor do I have an obsessive “special interest”, and I would say I’m above averagely good at expressing my feelings (I might just need some time, or I might need to do it in writing).

As to the second point, I don’t, really. I have friends and I have a social life, and you wouldn’t know I’m neurodivergent from looking at me or most likely not by talking with me (though I tend to bring it up…). But since my burnout in 2018 I’ve only had a few part time jobs and currently don’t have paid work. I could manage it, part time, if I had to, but I am in the privileged position at the moment of not having to, and I have come to accept that though some aspects of that make me uncomfortable, for now at least it’s the best thing for me. I can say with almost 100% certainty that if I had to have a full time office job to support myself I would get sick again. I literally cannot do that. Dr Price mentions in Unmasking Autism that autistics are largely underemployed and to some extent unemployed (more so than the general population), which doesn’t surprise me. There just aren’t enough jobs that cater to autistic needs.

I am also an adept adapter. While I am by no means the most flexible or spontaneous person, and may instinctively react badly to criticism because I take it personally, it is exactly for this reason that I tend to take most criticisms on board and try to change my behaviours based on this, because I want to be nice and be liked. An example: while I was still in my office job, my boss came by one morning. I must have been tired or upset or both, and he said something along the lines of it not being nice to be met with “that” face in the morning. It stung. I remember feeling like a bad human, a disappointment. I had let the mask slip. And I realised it was important to my boss and maybe to other colleagues that I didn’t show my real mood when I came in to work, so I started plastering on a happy face (which may or may not have been convincing, but I gave it my best). I might not instinctively know or understand these things, but once I’ve been told, I generally adapt quickly and don’t forget (this also goes for when someone pointed out to me for the first time that a person asking how I was didn’t really want to know – this was in my early 20s, and ever since I have kept it in mind and do my best to give the standard answer). Don’t get me wrong, I realise neurotypical people also face these kinds of challenges and have to adapt to the people around them, and I’m not saying we shouldn’t do that at all. Society would crumble. But autistic people have to do a lot more of this, and sometimes for social reasons they don’t really understand. And I do think it’s important for autistics to realise when they are masking and why, so you don’t end up putting on an entire fake persona, as I believe this will ultimately lead to mental and physical illness and strengthen that sense of otherness and detachment.

Also, we moved across the country and uprooted our lives because I was overstimulated – in essence. This is not really functioning “normally”.

I’ve written this wall of text in the hope that other people might recognise something of themselves and feel seen or understood. Or get a greater understanding of the neurodivergent people around them. I’ve always been an odd kid (and an odd adult) and felt that otherness, and while it hasn’t always bothered me, a big thing in my life has been a wish to be seen, recognised, understood. So this journey and this learning is also about not only explaining and expressing to others how I feel and how I work, but me understanding myself better. Autism feels like another part of the puzzle clicking into place.

Hey, Sarah, you say you don’t have special interests, but you’ve basically just written an essay on ASD and high sensitivity (for which you have read several books as well as scoured the internet for resources and information) – isn’t that indicative of a special interest in these topics, or at the very least, in mental health and self development?

Why yes, I suppose you are right. What an astute observation you made there, dear reader! I do have a special interest in mental health and in how people work. It’s just not the kind of thing I’m likely to rattle off facts or statistics about. I tend to be a little more ADHD in my interests though, and can become obsessed with something (often a creative interest) for a shorter period of time and then lose interest.

I’m (probably) autistic, now what?

Good question. Now, not necessarily anything. Autism is not something that can be treated or that will go away. If you are on the higher support needs end of the spectrum, it might be useful to get an official diagnosis so you can apply for any social benefits or special accommodations required, depending on where you live and work. If not, then IMO being aware of your autism is just a useful tool for self-reflection and self-development. It might give you insight into why certain things are difficult for you, that don’t seem to bother neurotypicals, and may help you to be kinder to yourself and accept yourself more (in my experience this is a long and winding road, though). It can also be helpful in examining what kind of work you are best suited for – both your strengths and limitations, as well as just planning your time to get the most out of it. For instance, I have become more aware of how taxing group activities or crowds are to me. This doesn’t mean I will avoid them at any cost. It means that when I decide going to a crowded event such as a concert is worth it, I try to make sure I have enough time to recover and process the experience, so I don’t get stressed out/depressed/angry afterwards. I also try to plan, look up travel times and when I can leave, is there an outdoor area I can easily escape to if it gets too much, where can I get something to eat, etc?

Too much time, and too little.