top of page

But, you don't look autistic...?


Five days, three hours and two minutes to go. Next week I might be autistic.

In five days, three hours, and two minutes my autism assessment will be done. The wait and the confusion and the worry will all be over. Or maybe they will be worse: I’m not really sure.

I’m Lauren, I’m twenty-seven, and I live in London. I’ve got a good degree, a good career, and good friends.

In March 2020 I started therapy, mainly due to a lifelong struggle with anxiety. The main thing I’ve learnt is this: I do not have a clue what is going on in my own brain or body.

It turns out that my anxiety gets in the way of a lot. And the fact that I’ve been on a continuous cycle of work hard → burn out and take time off → work hard for years was probably kind of predictable.

I’ve learnt that my hyper-sensitivity to sensory input, rabbit-in-the-headlights fear of breaking unwritten social rules, and inability to notice things outside my direct focus are just some of the reasons that leaving the house can be terrifying. And that the fact I consciously curate my facial expressions, endlessly rehearse conversations, and manually process what people’s body language and facial movements mean are just some of the reasons I find human interaction exhausting.

I have also learnt that all these things are extremely common for women with autism.

Some definitions and explanations (how I personally describe things, I am not a clinical psychologist…)

Autism. I’ll talk about my experiences of autism as three categories of issues combined:

  • Social stuff — social communication and interaction difficulties.

  • Routine stuff — repetitive and restrictive behaviours and interests.

  • Sensory stuff — sensory processing difficulties, both hyper- and hypo-sensitivity.

Autism in women. The core difficulties are the same, but women often get diagnosed later in life. There are a few reasons for this, including:

  • The tools used to diagnose autism are mostly validated on males. They do not capture the features more prevalent in females. Many girls get missed and therefore don’t get the right support.

  • The main difference in presentation is that girls are more likely to “mask” their autistic traits. This could be due to stronger social mimicry skills and a higher motivation to “fit in” to a neurotypical world.

  • Many autistic women are therefore very skilled at appearing to fit in, while their internal worlds can be drastically different. The huge effort to mask inevitably leads to exhaustion, meltdowns, and burnout.

Autism is not a totally new topic for me. It’s something that has come up with everyone who has ever lived with me (that is, family and partners). It was never completely serious. I’d be described as “a bit autistic” after freaking out about a change to, or lack of, a plan, or because I’d become overwhelmed while out in a busy place. I never really internalised that though, and don’t think anyone intended me to.

In my final year of university, an accumulation of those comments, plus some pretty intense anxiety, did prompt me to go and see a GP about possible autism. More out of curiosity than any strong conviction on the subject. I asked to be referred for an assessment, assuming that this would be straightforward. The GP pretty much laughed me out of his office, on the basis that I’d been “coping” with university and was able to hold a “normal” conversation with him. Which made me feel shitty. Then I just stopped thinking about it.

Since it came up in therapy, however, I’ve done a lot more research. As soon as I saw autistic women talking about masking, it was like I finally had the missing piece of the puzzle: I probably really am autistic.

I always knew I had some “sensory stuff” and “routine stuff” (e.g. the things called out by family or partners). But the “social stuff” is what never quite fitted. I had always been able to make friends, and to speak to people (e.g. that GP...), albeit while finding those things utterly exhausting. Hearing autistic women talk about how extremely manual social interactions are for them was like having someone read aloud from my brain. And it totally explains why people drain me so much more than it seems like they should.

I decided to get assessed for three reasons. First, I hate to leave a question unanswered. Second, it might mean I can explain why I find certain things hard using one single word, rather than gradually having to persuade someone to stop looking at my outward appearance and start listening to my words. Third, if the answer is autism, maybe I can give myself a break from trying to find things easy that I possibly never will.

I’ve spent the months since that decision trawling back through my childhood, teenage years, and adulthood, recontextualising all sorts of stuff that never felt quite right... I have also become much more conscious of the sensory issues that bother me every minute of every day and pile on the anxiety without me even realising. Which has been exhausting.

I wanted to record how I felt during the run up to my assessment, plus some of my reflections since then. Partly to help myself process it, and partly to share with others to help explain what it all means. But mostly because I’m nervous about the assessment and won’t be able to stop thinking about it before then anyway. So this is that.

I’ll talk about my own experiences of the three categories above (social, routine, and sensory stuff), how I felt after the assessment, and a bit about my take on women and autism.

 

Four days, one hour and eleven minutes to go. Routine stuff: today I hid in the wardrobe for an hour.

Two weekends ago I moved house. My new place is bigger, and in a quieter neighbourhood, which is great.

With any change though, even good ones, comes major disruption. All the new sounds, smells, feelings, working out my new routine...

I don’t just mean when I get up or go outside. I mean things like when I turn each light on or off, open or close different blinds, lock up the front door, where I leave my dressing gown, how to put the bins out, the way that I organise food in the cupboards. These (and countless, countless others) are all things I need to know. For 100% certain. The period between arriving and figuring all of that out feels horrible and chaotic. I get stuck in a kind of limbo, and I just don’t know what I’m supposed to do. Sometimes that means I can’t leave the house; sometimes it means tears; sometimes it means staring blankly at the wall, or pacing up and down without realising that an hour or more has gone by.

So, today, once again, I found myself hiding in the wardrobe. Scrunched up silently until I’d calmed down enough to come back out into the real world and try again.

I chose this spot on day one. Somewhere that I could crawl in and curl up and hide and feel safe when things got too much. In the past, I’ve used corners, hidden my head in a coat rack, had a partner put a blanket over my head, climbed into big cardboard boxes, crawled behind a statue in the foyer at a party where I knew no one would look for me... I need somewhere tiny that I can block out as many sensory inputs as possible, and where no one will bother me.

“Routine stuff” is probably the thing that partners and family would most obviously recognise in me. Any ambiguity or change around times for meeting up, when exactly in the day we’ll go to the supermarket or out for a walk, changing a location, or changing the route to a location, will all completely throw me.

Planning how to get places, especially if that location changes last minute, is one that stumps me pretty often. As soon as I learn that I’ll need to get somewhere — no matter how far in the future — I’ll research my route and timings in minute detail. I’ll do this again quite a few times before I actually make the journey. If I’m going by public transport, I make sure there are as few changes as possible, and avoid busy options.

Sometimes that means increasing my journey time by quite a lot (e.g. my fifty minute morning commute pre-COVID was normally around an hour and a half, because I took two empty buses instead of two crowded overground trains). If I’m walking in an unfamiliar area (which I often do, to avoid an extra leg of public transport), I’ll use street view beforehand to see what key junctions look like, and to decide exactly where I should cross each road.

If I can’t tell from street view whether it’s possible to cross, or exactly how to do a certain part of the route, sometimes I just don’t go. If I don’t know exactly what to expect, and therefore might have to change my route on the fly, it’s usually not worth the anxiety.

One unhelpful side-effect of being very rigid about my own routine and plans (besides the amount of time it takes up), is that it can be very hard for me to understand when other people make changes. Sometimes I take it quite personally when it’s totally not. In my mind, I can’t understand why someone didn’t see that change coming and do something to warn me, or better yet to avoid it completely. The reason? Most people do not use up most of their brain space most days going over their plans... and their plan Bs and their plan Cs.

One helpful side-effect is that I’m really good at planning(!) and time management. Often, I’m asked to give training or support on things like that at work. But these aren’t skills I’ve carefully honed in the professional environment over the course of my career. They’re just daily survival mechanisms. If I don’t know exactly what I’m supposed to be doing, at what time, and in what order, I feel completely lost, and will end up in a meltdown before very long.

 

One day, nineteen hours and thirty minutes to go. Social stuff: today one phone call melted my brain.

Today I had a half-hour call planned at 3pm. It was with someone who I get along well with, but am not super close to. When we arranged it, I was looking forward to speaking to them.

Thinking about it kept me awake a bit last night. I spent all of today rehearsing imaginary strands of conversation with them, and struggled to concentrate on anything else. I made mental, and later physical notes to ask them questions about certain things and to do small talk at the start of the conversation. (This is not at all out of the ordinary for me: in a lot of my meeting prep notes I have some variation of “do small talk” written in at the start because otherwise I just won’t...)

During the call, I felt really anxious. I was very aware of the gap between my tone of voice (friendly, happy, bubbly) and what my body was doing (fidgeting, closed off, zero facial expressions).

After the call, I felt exhausted, was almost in tears, and couldn’t really do anything. I was simultaneously drained and on edge, reviewing everything in my head over and over, rewording things that didn’t sound quite right, wondering if I’d asked enough questions, or did enough small talk, or sounded interested enough...

And all that for a half-hour casual chat with someone I actually like. None of what I’ve just described is very uncommon. It probably explains why days of back-to-back meetings completely floor me.

I think anyone with social anxiety can probably relate to this on some level. One difference with autism (especially for women with autism) though, is how manual a lot of aspects are. In social interactions, it kind of feels like everyone else is driving an automatic, while I’m still fiddling around trying to work out how to use the gear stick. Which takes up a lot of energy and brain space.

As a teen, I had a real obsession with body language and psychology. Apparently, that’s super common for autistic girls trying to make sense of the social world around them. I remember reading lots of books about body language, and loving the show Lie To Me where they talk about what different facial movements might mean. I remember getting told off for staring at people too... I liked just watching people, trying to decipher what was going on, and memorising expressions or gestures that I liked so that I could use them later.

As an adult, I have noticed that I consciously think about what certain facial movements or body positions mean in social situations. It literally only occurred to me last week that maybe most people don’t mentally refer back to body language books and TV shows while interacting, in order to work out what that thing you just did with your body or your face means about how you are feeling. They know all that unconsciously.

I do something similar to what I’m portraying. Often, I’ll automatically want to move into an odd position but consciously move into one that I “should” be portraying at that moment instead. Left unsupervised, my face actually doesn’t do much moving at all... so I do that manually too. And I almost definitely won’t look you in the eye unless I’ve consciously decided to do it at that moment. Usually just because enough time has passed that it might seem weird not to.

I also rehearse conversations endlessly. My response to “How was your weekend?”, a funny anecdote about something that happened as a child, how to introduce myself or explain something in a meeting, how to check into a hotel, and honestly anything else you can think of. When a conversation veers from my “script”, I go totally blank and have to force myself back on track.

Sometimes I do this by asking people to repeat themselves, as that buys me some time. Countless times I’ve “not heard” a question from someone taking my order or showing me to a table, and asked them to repeat it, because my mind is blank and hasn’t had time to compute this new line of enquiry. Why on earth did they not stick to the script that I made up in my head!?

No wonder people are so fucking exhausting. No offence.

 

One day, one hour and fourteen minutes to go. Sensory stuff: last night my toenails kept me awake for forty-five minutes.

I’ve read that the sensory stuff causes a lot of anxiety to build up through the day. Paying it more attention in the short term has been stressful. I definitely was not aware of a lot of things that cause me a lot of problems. But in the long run, awareness will mean I can adjust to my environment and reduce the anxiety. Which is good.

Last night, as I was trying to sleep, ALL my brain could think about was the feeling of my toenails. My finger and toenails often have this effect. I get the feeling that they might accidentally be pulled back and come off.

It means I sometimes have to put my shoes on two or three times before I can feel like my nails are comfortable in my socks and shoes. It means I can’t wear anything open-toed and hate being barefoot. It also means I spend a lot of time pressing my fingernails down whenever I’m remotely anxious (so a lot...) This is one of a thousand examples of sensory things that can easily take over my brain.

It’s maybe hard to imagine if you’ve not felt it. When something like this bothers me, I get more and more overwhelmed, and the feeling will get exponentially worse until the input stops, like my brain is being filled up. Alone, I might grimace, hide my face or ears or nose, run away or hide from the cause somehow, pace, rock, get angry, cry... In front of most people, I will hide all of that and do precisely nothing. Which is very draining.

I think about sensory stuff in two categories:

  1. Hyper-sensitivities: things that I’m overly sensitive to. Most people’s brains flag most bits of sensory input as “not important”, and these then get filtered out. That doesn’t really happen for autistic people. This is mostly bad, e.g. not being able to filter out background sounds or smells or the feel of a label in your clothes. It can also be good, e.g. certain smells are super calming.

  2. Hypo-sensitivities: things that I’m under-ly sensitive to. For me, and a lot of autistic people, my brain does not get enough proprioceptive input (where your body parts are), vestibular input (interpreting movement), or interoceptive input (internal senses e.g. hunger, temperature, tiredness, etc.). That leads to a lot of background anxiety, because your body doesn’t quite understand where it is, and it may not be meeting all of its physical needs.

I am starting to think that sensory stuff, in particular my lack of proprioceptive input, is why I feel very detached from my body all of the time. It would be called depersonalisation if I sought a diagnostic label for it.

Since the age of about fourteen, I’ve been aware of feeling very disconnected from my own body. Like my body parts aren’t really mine, and I can’t easily tell how different parts of me feel by thinking about them. When I’m with someone else, I notice something like a void between my brain and being really “with” them at that moment.

I think I understand why my brain does it... the whole world is extremely overstimulating, which causes some level of continuous anxiety. By detaching from my surroundings, my brain creates a little buffer zone to live in, so that not everything needs to be processed.

Sometimes that’s super helpful. If I’m in a crowd or a busy office, without that detachment I’d probably spend the whole time hyperventilating. But it’s sometimes unhelpful. For example, if I want to feel more connected with someone, or notice how anxious I’m feeling, or how hungry/cold/thirsty/unwell I’m feeling. It can also be dangerous because it’s sort of like having blinkers on.

While out and about, I won’t always notice that a car is moving towards me. Or while listening to music, I won’t feel that the flame I’m using to light my candles has had my thumb in it for a few too many seconds. That sort of thing.

I can count on my fingers the number of times I’ve felt truly “there”. Usually, it triggers a panic attack. Maybe because my brain wasn’t expecting the sudden onslaught of sensory input that it’s usually protected from. There have only been a couple of times where I’ve felt properly present and it hasn’t triggered a panic attack.

One moment was when I sat, cuddled up with a partner. We were watching TV and holding hands. All of a sudden, I felt like we were holding hands, and it was really sweet and comforting. I said something like “Oh, is that what it feels like for you all the time?! That’s really nice!” In part, that makes me sad for all the things I’m missing. But it also gives me hope that I’m still in there somewhere if only I can dial the anxiety back.

Tomorrow is my assessment. I’m not mentally prepared to hear anything other than “yeah, obv”... It makes too many things fit together for me to contemplate anything else. I’m terrified that they won’t be able to see what is going on in my head, and so won’t believe how difficult things can be. That I’ll come across too “normal”, just like I do with everyone else. I chose these psychologists because they specialise in diagnosing women, so hopefully, they’re expecting that, but who can say? I’ll just have to wait.

 

Four days, six hours and fifteen minutes since. Diagnosis: I am autistic.

It’s taken me a while to get back to this since my diagnosis. My head’s been in a spin since then. I’ve either been really on edge, like all my sensory stuff is dialled up to 1000% and I don’t know how to calm down, or completely exhausted. Yesterday, I fell asleep in the afternoon, which I never do. I hated it.

Overall, I’m very relieved. It feels super weird and kind of scary like I’m just getting to know myself for the first time... But there’s finally something that makes sense of my brain. With that, I can work out how to make things better, and maybe my future can be less defined by anxiety than my past.

Knowing what “should” be difficult will mean I can better counteract or avoid sensory stuff, give myself more time to recover from social stuff, and ask people for things that will help with routine stuff. Most importantly, though, I can give myself a break for finding all of those things so hard in the first place.

The psychologists who assessed me said they were struck by how resourceful I’d been. Finding ways around my difficulties, and doing so much in spite of everything. I found that quite hard to hear. I suppose because I never did any of it deliberately... I’ve just carried on doing what I thought I should be doing, in spite of the impacts on my mental health.

Carrying on with all the external stuff (career, volunteering, social life, dating) then reaping the punishments (sensory overload, exhaustion, illness, meltdowns) in private. That’s not to say I’m not proud of the things I’ve done: far from it. But maybe giving myself that credit would be to acknowledge how hard things can be. And maybe I am not quite ready to face up to all of the implications of this just yet.

 

Autism and women. “But, you don’t look autistic...”

I’m still Lauren, I’m still twenty-seven, and I still live in London. I’ve still got a good degree, a good career, and good friends. I’m also autistic.

I’ve been looking back over lots of things that I always felt like I could “fix” or change about myself... every social situation where I’ve felt out of place, every trip that I knew would freak me out but forced myself to do anyway, every meltdown I’ve hidden while out and about or at work... Now I finally have an explanation. And it’s not me that has to change in order to do what I “should” be able to do. Instead, I can work out how to change the things around me.

There are thousands of women like me, who have not yet realised the same things, and possibly never will. In part, this is because the way autism gets picked up systematically misses the girls. As I mentioned in the definitions at the start, the diagnostic criteria and tests for autism were primarily validated on males.

The biggest difference in the female presentation of autism, and missing from those diagnostics, seems to be the prevalence of masking. That is, covering up autistic traits and mimicking social behaviour in order to fit into a neurotypical world. Obviously in an ideal world, this would not be necessary, and I am not recommending it as a strategy, but here we are.

What most people understand as autism, i.e. what is portrayed in the media or popular culture, tends to therefore be (a) male and (b) quite visible. Many autistic women just don’t “look” autistic according to the average person. Whatever that means.

It is maybe unsurprising, then, that a common reaction I have when telling people about my diagnosis is: “You wouldn’t know to look at you”. Or “You don’t seem it”, “but you’re high functioning”, “I guess it’s quite mild for you”... And the next part of the conversation is always draining. I feel the need to justify how hard things can be, and to put it in terms that are relatable for them, even though I know they can’t really see it.

This is a common reaction for lots of women “coming out” as autistic. It is understandable, given the common conception of autism, and how invisible it can be in women. But it feels shit. So that is the final thing I’m going to address here.

Imagine you just told a friend that you can’t come out to lunch because you have a headache. So far so reasonable. Imagine that the friend responds with: “Prove it. You aren’t screaming and crying from the pain, so surely it can’t be that bad! I’m going to come around and drag you out anyway.” That’d be pretty messed up, right?

Glad we’re agreed. Now imagine that every time you tell anyone you aren’t feeling well, they have the exact same reaction. You probably stop telling them. You probably run out of the energy it takes to justify your needs. You probably just start going along with things, despite the obvious negative consequences for your health... You get the idea.

After you read this, I only have one request. That is to listen, not look. For me, like many autistic women, I have spent my entire life masking to fit into a neurotypical world. What is going on in my head is nothing like what you see on the outside. That “skill” makes it almost impossible for you to intuitively know how to help, or to even see that things are difficult in the first place. I cannot prove that to you... and I shouldn’t have to. You’re just going to have to take my (and all those other women’s) word for it.

Lauren x

Commentaires


bottom of page