Part 74: You Don’t Look Autistic

Hello, and welcome back to The Autistic Writer. I hope you’re all well, and thank you for coming back. In this week’s blog, I want to return to that old autism chestnut that comes up again and again, in ever more frustrating ways: When someone says, You don’t look autistic, or any of its analogues such as, You don’t seem autistic, or I never would have known, etc, etc. If you google, things not to say to an autistic person, the phrase, You don’t look autistic, comes up again and again.

Speak to an autistic person about it, and they’ll tell you how annoying it is. But why? What exactly is wrong with saying, You don’t look autistic? This has been covered countless times by other autistic people, so I’m not going to dwell too long on regurgitating that stuff; I’ll summarise it quickly (with one or two of my reflections thrown in). But then I’m going to move onto something extremely personal that puts my own life’s context on the, You don’t look autistic issue. So, let’s start with that quick summary…


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The most common response from autistic people when discussing You don’t look autistic is to ask what does an autistic person look like? As a neurological divergence that by definition is in the brain, how can autism affect appearance? In what possible way can you look autistic? It’s nonsense. No one knew I was autistic until I was in my fifties, so how could it not have been spotted if autism has a look? Of course, the problem we have here is that people still do say things like, You don’t look autistic. This means people believe there is an autistic look, however nonsensical that might seem. How has this conception emerged? Common sense says it has come through popular culture and the media. This is one of the areas where the problematical movie, Rain Man, set the tone. And of course, Sia’s loathsome foray into this realm, the abysmal, sickening movie, Music has kept the myth going. Many autistic people can give their own go-to examples of bad representations of autism in the media. Listing them all isn’t helpful here; it’s enough to know the problem exists. The point that needs to be continually and relentlessly hammered home to people who lack understanding of autism is that all autistic people are different, and that includes their appearance. There is no autistic “look”. So far, clear enough, but is there something else wrong with the concept of looking autistic?



Telling someone they don’t look autistic is, as seen above, the same as saying there is an autistic look. To claim there is an autistic look is to both generalise and stereotype. A stereotype is a claim that all people of a certain grouping share all or most of the same, usually negative, characteristics. It is to deny individuality. As such it is the basis for racism, sexism, misogyny, homophobia, and transphobia. Stereotyping says, These characteristics are all bad / negative / inferior / undesirable, therefore all people possessing these characteristics are bad / negative / inferior / undesirable. Depending on the disposition of the person making the claim, the results can be any kind of discrimination ranging from open violence to inappropriate sympathy. Saying, You don’t look autistic, then, is based on the flawed view that there is something wrong with autism; that the autistic person is not right in some way that should have been instantly visible in their appearance. It is the claim that autism is bad, therefore autistic people are bad. What bad means in this context can be anything from the claim that autistic people are violent and dangerous, to the perception that autistic people are sub-human. It stems from the ingrained belief across our society that autistic people are damaged goods, broken, abnormal. That’s why, along with, You don’t look autistic, other phrases autistic people keep hearing that are just as insulting, are things like, I’m so sorry to hear that. If you’re a non-autistic person and you’ve expressed sympathy to someone who has told you that they are autistic, then you need to educate yourself about autism and autistic people, you need to educate yourself. This is not to suggest that autistic people don’t have problems or need help – we often do. There is a reason autism is classed as a disability. But I feel safe in saying that pretty much all the problems experienced by autistic people can be alleviated or mitigated by changes to culture and environment. In other words, the problems experienced by autistic people are not intrinsic to ourselves. I’ll be covering that thought in another blog post soon, but I also touched on it here.

In spite of the points just made, certain people would claim they can tell someone looks autistic not by their general appearance, but by their behaviour. It would seem that they are referring to meltdowns and stimming. To be honest, any non-autistic person talking about autistic meltdowns and autistic stimming just feels icky. It’s creepy. Stay out of our meltdowns and stims, you creepy voyeurs. Many autistic people keep their stims private, but if you’re a non-autistic person accidentally seeing it, you really should keep your nose out. If we willingly show you our stims, you should feel privileged. This is highly personal stuff. As for meltdowns… One way of explaining meltdowns is to say that they are inflicted upon us. No autistic person asks for a meltdown. A meltdown is a response to traumatic circumstances beyond our control, and it can look very different from one autistic person to another (there’s that pesky individuality again). We can’t control when or how a meltdown occurs, because of the nature of it being inflicted upon us. However, sometimes, we can delay a meltdown. Sometimes, we can feel it coming on, recognise the signs, and if possible exit (or flee) to a safe place to melt down in private. It is remarkable how much we – autistic people – hide things about ourselves from the neurotypical world. It is part of our masking armoury. Just because our stims and meltdowns are not public, it doesn’t mean that we are not autistic, and so the claim, You don’t look autistic, based on this, is still ridiculous.

Okay, we’ve just skimmed some of the common thoughts about the insulting nature of the comment, You don’t look autistic. What I want to do now is get personal, and share some photographs of myself, with thoughts about how I “look” in these photos, and how they relate to me being autistic. A point to remember when looking at the photos is that although I have – of course – been autistic all my life, I didn’t suspect I was autistic until I was fifty years old. Even then, I dismissed the idea. It was roughly two years later when it started to seem it might actually be the case, and another year and a half before it was “officially” confirmed with a diagnosis. Most of the photos you’re going to see here show me being my autistic self, before I knew I was autistic. I’m taking a risk posting these photos, because I have a huge amount of insecurity about my appearance, so if you comment, please be gentle about it.


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This was taken about 1972, I think. I was about seven years old. My mother held onto this photo for the rest of her life. Many years after it was taken, I guess I would have been in my thirties, she told me this photo was the last time she could ever remember me seeming really happy. I could never take away from her the memory she had that I had been happy at that age, but the truth is I was never happy. I struggled with being in the neurotypical world from the off. Even at this age, teachers couldn’t keep me in school. I couldn’t deal with school but I didn’t know why. I was intelligent, far surpassing all other kids in literacy, and handled most schoolwork with ease. But I just couldn’t be there. Being there was too hard. I believe it was a year-to-eighteen months after this photo was taken that my mother took me to a doctor and told him that she believed I was suffering from depression. The doctor was skeptical at first – kids can’t have depression, was the view – but he soon changed his mind. My mother died before I found out I was autistic. I wish I could have known it while she was still here, and had some conversations with her about it. I’m convinced both she and my father were autistic, too. I’ll leave it up to the reader to decide if they think I “look” autistic or not in this picture. My mother wouldn’t have appeared autistic to anyone relying on stereotypes, as she was highly sociable, always smiling, and renowned for her loud, infectious laugh.


A typical photo of me for this period of my life; in a bar somewhere, acting daft. I did get a reputation as someone who went out a lot, had fun, and had plenty to drink. The drink was a prerequisite for any “fun”, as I couldn’t function in these settings without alcohol. For a long time, I equated being drunk with having fun, but it just wasn’t the truth. Not that anyone noticed. To them, I was the party animal. The young man with me in this photo is my son. He doesn’t “look” autistic either, but he is.


This is me on my wedding day. The lovely lady on my arm is not my bride, but my mother. She’d suffered an injury the day before, and wasn’t feeling well at all, in this photo. But she was happy for me, and proud of me. When I look at myself in this photo, I think how skinny I look. However, at the time, I thought I was overweight. I’d put some weight on in the previous year, and worked hard to get it back off, but hadn’t gotten down to the target weight that I felt comfortable at. This should have been a very happy day for me, and it kind of was. But even on my wedding day, I found myself alone at times at the reception. That’s right; I found myself alone at my wedding reception. I didn’t know how. It was quite a big reception, with a lot of people, and they were all having a great time. This should have been a tip-off to me about my ability to socialise in a way that other people find “normal” (or as I now know it to be, neurotypical). I was almost paralysed with nerves on my wedding day, acutely aware that so many people were watching us at the ceremony, and I could barely croak out my “I do,” about which I still feel embarrassed. Many years have passed since then, and my wife and I have now separated, pending a divorce. You’d have to ask my wife if she thought anything about my “look” back then hinted at me being autistic, but I suspect the answer would be no.


Another photo of me and my son, David. This was taken in a pub somewhere, I can’t remember where. I can’t even remember who took the photo. What I remember is that David and I had been having a conversation in which we confided in each other about some troubles we were both experiencing. Mental health issues such as depression have always been in our lives. Both of us now accept that much of the difficulty we have experienced has been the result of trying to navigate a neurotypical world when we didn’t know we were autistic.


I’ve never been photogenic. I’ve got the kind of face that cameras take an instant dislike to. I asked for this photo to be taken, and if I remember correctly, I wanted it for some very specific reason… but the reason itself escapes me. There was a deliberate attempt from me to look somewhat moody for this picture, and it was a bit silly. People who knew me could tell I was being a bit silly, and the photo raised some smiles. But the truth is, I was in a pit of depressive despair at this time, and doing everything I could to cover it up, so that people would think I was still functioning.


Me and David, again. In this photo, the smiles are genuine, and we were having a good time, just pleased to have got some time together, even if we were having to suffer through a Sheffield Wednesday performance. Just two autistic lads at a football match. I have no recollection of the crowd chanting anything about the two autistic lads over there. Maybe we didn’t look autistic enough. As happy as I might appear here, going home, I felt utterly miserable and dejected, and it had nothing at all to do with football.


This photo was taken in hospital when I was admitted after a second trip to A&E in an ambulance in two days, suffering from severe chest pains. Before the ambulance arrived on this day, I was convinced I was dying. This is not me being dramatic. I thought it was a heart attack, and the ambulance wouldn’t get to me in time. This was the nadir of a prolonged period of ill health with the chest problem I’ve talked about previously on the blog. One of my bosses at work had previously hinted that he thought I was faking illness, and then went on to say he thought my doctor was “taking the piss.” He didn’t mean a urine sample. Anxiety is a way of life for many autistic people, and I was so anxious about the damage to my reputation at work due to chronic illness that, instead of focusing on my health, I was asking my wife to take a photo of me to send to my boss just to prove I really was in hospital so they wouldn’t think I was faking. Like many autistic people, I have a powerful sense of right and wrong, of justice and injustice, and the insinuation in my workplace that I was milking or faking illness burns me to this day. Do I look autistic? I think I look like a guy who is unwell. And frightened.


This is me at a Turkish bath and spa, on holiday in Turkey. I look like I’m having a good time, and I told everyone who would listen what a good time I’d had. This is what you have to say about a holiday when everyone else there seemed to be enjoying it. In truth, I hated every moment of the Turkish bath experience, and felt embarrassed and uncomfortable through the whole thing. What I was doing was masking; pretending like everything was okay. This is what autistic people do; we mask to be able to get by in the neurotypical world. We try to fit in. We take our cue from the neurotypical people around us, and if they say it’s good, we’re going to agree with them. Until, that is, we reach a point where we’ve had enough of that bullshit, and start telling it the way it is, like I am now.


This photo shows me with what I think looks like a pretty natural, genuine smile. In fact, I was in the middle of a very long decline in mental health that eventually led to me being identified as autistic. It was around this time I started to have some thoughts of taking my own life. I’m pictured here just before going out to a social event. I didn’t want to go. I was dreading it. In this photo, I am making a deliberate, conscious attempt to appear happy, when in fact I am in despair. Much of that despair was a direct result of not knowing I was autistic, and trying to cope with how I was experiencing the world. If people want to make any comment at all about how autistic people “look”, they should first understand that the type of masking I was engaging in is not at all uncommon. We autistic people mask loads of the time.


This is me on holiday, again. Turkey or Spain, I can’t remember which. This is another example of me deliberately and consciously pretending to be happy. Personally, I think the mask slips a little in this picture. I see in myself here a hint of the real desperation I was actually feeling. I was barely coping or functioning at this point, but most people around me would have had no idea of how I felt. This photo was taken, I believe, in the summer of the year I first wondered if I might have that Asperger’s thingie.


I took this selfie in an attempt to get a “neutral” photo of myself, and I actually used it on the blog for a while. Unfortunately, the picture quality is rubbish, but I used it anyway because the blurriness of it hides my features, somewhat. Like I said earlier in the blog, I’ve got issues with my appearance. This is me with my covid head-shave, first done when all the barbershops were closed during the first lockdown in 2019. I’ve continued shaving my head ever since, and have never again set foot in a barber’s. I’ve always found trips to get my hair cut absolutely traumatic. I hate it. The social aspect of it is excruciating to my autistic sensibilities. I sometimes think about growing my hair back but every time that thought occurs, I remember what it’s like in the barbershops, and the razor comes out.


This is me in the summer of 2021, having fully come to terms with being autistic and revelling in it. In this photo, I’m newly single after the breakdown of my marriage. I’m on a bridge over a stream in Millhouses Park, Sheffield, one of my favourite little walks. I’d been listening to an audiobook through my headphones. At this time, I was worried about the future; where was I going to live? How could I reconcile what I now understood as my needs as an autistic person in the workplace? Would my back ever stop hurting? I can see all that in my face. I can also see some relief about moving into a new phase of my life, though, as well. But most of all, what I see in my “look” in this photo is a history of pain and trauma. One thing autistic people definitely have in common is a history of trauma. I can literally see it in my eyes in this photo, so maybe in that sense, I do look autistic.


You can find The Autistic Writer on all your favourite social media channels


That’s all for this week. Until next time, take care, be good, stay proud.

Darren


Why Do I Write This Blog?

When I first found out I was autistic, I was a middle-aged adult and I knew nothing about autism.  I quickly learned that there was a serious shortage of information and resources for adults in my situation.  With this blog, I aim to inform about autism and autism-related issues as I learn, hopefully helping people who are on a similar journey of discovery.  Like anyone who writes a blog, I want to reach as many readers as possible; if you like what I’m doing, please share it with your friends and followers.  I will never hide this blog behind a paywall, but running the website does incur costs. If you would like to support, feel free to make a small contribution at BuyMeACoffee.Com.

You might also be interested in David Scothern’s blog, Mortgage Advisor on FIRE, which covers a range of topics including mental health issues and financial independence.


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