I am autistic.
I was recently diagnosed at the age of 33, after experiencing poor mental and physical health for too long and when the treatment I was receiving for depression and anxiety was not making any difference. This watershed diagnosis and the stream of articles, blog posts, Youtube videos, and Twitter threads that I have consumed over the past weeks (or that have consumed me) have changed everything. For three decades I have struggled with being me, being different, being misunderstood, and - importantly - not knowing why. Now I finally do, and the feeling is overwhelming. It is both liberating and frightening; confusing while it makes perfect sense. I have yet to fully process the vast amount of thoughts, emotions and information that is currently hijacking my brain in an ironically familiar way. My way of understanding anything, especially my own emotions, has always been to take time and reflect, to think deeply, to overthink, to obsess. And to write.
So now I’m writing.
The diagnosis triggered an overwhelming wave of recognition in everything that I do and experience. Thinking back, it seems so obvious, like I should have known all along. I’ve certainly felt it, daily. I’ve known that I am… different. That I think and feel and view things differently. What’s been missing is the reason why, and the blinding clarity and string of new questions that flowed from that. But the signs were there.
From a young age, I’ve felt like an outsider, like I don’t belong with other people. I have watched from the fringes how people go about their daily activities, how they interact, how they talk to each other and share joy or other emotions. And I have always felt that I am not part of it, and that I don’t experience life in the same way that they do. This is particularly pertinent when I’m in a group. Apart from the physical discomfort I feel when I’m too close to other people or when someone enters my personal space, I am overwhelmed by their thoughts, emotions, and needs. As if there is only a limited amount of space for those entities in my brain, and my own don’t fit. Theirs go in the one ear, and mine go out the other. When I’m confronted with such a scenario, it’s as if I forget how to think or feel the way I “normally” do, i.e. when the external stimulants are less imposing and when I have time to work through my thoughts systematically. Consequently, my thoughts and feelings get deprioritised or fall by the wayside.
I now know that this is because, plainly speaking, I process external stimuli differently. I have difficulty with the real-time filtering of information that’s given to my brain by my senses. As a result, everything just enters my brain and mostly runs amok. I have to spend a lot of energy parsing sensory information and deciding what to exclude, what to enter into the pipeline, which aspects to react to, and which ones to let go of (and, dear reader, I can hardly let go of anything). And what’s more, the spent energy is very often to no avail. This is particularly evident (to me at least) when the information I have to parse involves other people’s emotions, or their reactions to mine. When people speak about intuition, I doubt that their definition for the word is the same as whatever I experience. Each possible interaction, to me, is something that needs to be dissected, analysed, over-analysed. Should I have said that one sentence with that exact emphasis? Should I have used a different verbal expression, or intonation? That one moment when they lifted their eyebrows in what seemed to be surprise, was that actual surprise? Or slight disgust? Or something else? Should I go back and figure out how exactly they interpreted it? Or tell them I didn’t mean it in a bad way? Or does that come across too desperate? Should I rather message them? What words should I use to make the message sound relaxed, nonchalant? As if I’m not obsessing over my possibly incorrect use of three words or over a slight muscle twitch in their forehead… Whether it’s something that happened long ago or very recently, or something that could happen in the future, my brain will take me on an anxiety-ridden journey of every possible permutation of a given interaction. It is tiring, at best.
For as long as I can remember, my response to this… *gestures wildly with hands next to my head*… state, and my response in general when the external world gets too much (read “daily”), is to have a constant internal dialogue (yes, I see the irony). There are many layers to this process of internalisation. For example, I have the ability to hyper-focus by shutting out the external world, indeed not even hearing when people speak to me or registering the passage of time, which has helped me a lot through school and university. I’ve also used it as a way to switch off when my senses are in overdrive. It’s a chicken-and-egg situation really: have I always had this ability and then exploited it as a coping mechanism, or did it develop because I needed to cope? Maybe both? On this deeper level, as soon as my surroundings get too intense or too monotonous for me to handle, I disappear behind the shroud that is my own internal experience. I am often unconsciously drifting off into a world removed from the physical, whether it is to daydream while sitting in a class “listening” to someone talk, or whether it is to draw back into hiding when things get tough. But then, as much as my mind can be a creative shelter or a hiding place to deal with the barrage of my senses, it can also be a prison due to my intrusive thoughts and incessant scripting. My thoughts take over, forming a whirlpool in my brain that sucks me deeper and deeper into the center, mercilessly. I can feel my brain pulsating with this information overload, and I just want to escape. But I have little control.
For over 30 years, I have also maintained other coping mechanisms without actively realising their meaning or importance. For instance, without calling it by that name, I have always been stimming. I have the complete inability to be physically still. I am always fidgeting or making repetitive movements or sounds, tapping my fingers or my feet. Almost always when I think deeply or zone out, I will tap my fingers or feet or teeth (or all together) in whatever rhythm comes in handy at that moment. When I am in an emotionally or otherwise stressful situation these behaviours become more intense. When I’m having dinner with a group of people, I will repeatedly stack the salt and pepper or the cutlery next to each other in a straight line, or turn my glass in circles over and over in the same spot, or rip the serviette into tiny little pieces. As I’ve now learned, autistic people often show self-stimulatory behaviour such as repetitive sounds, movements or words as a protective response to the over-stimulation that we experience from external stimuli. It all makes sense, really. At least now, after 30 years.
30. Fucking. Years.
Three decades of experiencing all of the above and not knowing why. Three decades of experiencing the reactions to me being…me, and not understanding the misplaced feeling that it left me with. Goddamn, if I had some money for every time someone told me off for tapping too loudly, or for not sitting still. Or for every time someone said I’m taking the easy way out when I disappear into my internal world. Oh, the countless arguments I’ve had with people after I assign too much weight to a specific word or expression they used while they actually meant something different, something apparently intuitive, and having to deal with their disappointment or anger as a result. And the frustration of being told not to make things unnecessarily complex, while all I’m doing is acknowledging the complexity that already exists! The fog is clearing on the entirety of my earthly experience, and it’s a revelation. And so very frustrating and sad.
Seeing all of this laid bare might be very surprising, even upsetting, to some. Family and friends have known me for so long and bar a few emotional growing pains and idiosyncrasies have never really noticed anything that would suggest autism (*feigned gasp*). I’ve had, and still have, friends. I have a partner and children. I can manage everyday life without apparent difficulties. I can speak publicly, I can interact with new and familiar people. By all standards, I’m…fine, right? This gets to the core of my current discomfort, fears and internalised ableism: being told “you don’t look autistic” or “you’re too high functioning to be autistic”. But, then, what does autistic look like? Should I not be able to speak? Should I have learning disabilities or other challenges that prevent me from leading a so-called normal life? Is what I experience every hour of every day not convincing enough? Am I not autistic enough?
The fact that these questions are valid and accurate reactions to what autistic people face every day reflects a society that doesn’t care about people who are different. Or rather, a society that actively marginalises difference. Should we depend on such a society to give us the correct representation of what an autistic person should look like, or how they should act? A society that has killed, tortured and institutionalised both children and adults labeled as autistic1? In every facet of our daily lives, society imposes its rigid system of oppressive categories: of same and different, of good and bad, of abled and disabled. Autistic people experience this pain. In the reactions to their “weird” behaviour, in the offensive comments to their stimming, in the deprioritisation of their sensory needs, in acts of exclusion, discrimination and much worse, autistic people are told that they don’t belong. And in an act of self-preservation, autistic people mask: we learn and apply neurotypical behaviours in order to fit in.
I have masked for as long as I can remember. It underlies my experience of being an outsider, of holding back my true self so that people aren’t put off by it… by me. I so dearly want to fit in, while I know that so much of me cannot. Over time I have become adept at playing the neurotypical game, saying the right words, unfazed by stressors, going about my daily neurotypical activities, often unconsciously acting “normal”. But this goes hand in hand with suppressing my stimming and my emotions, to such an extent that I often don’t know what I really feel or what I really want or need. This confusion is fertile ground for perpetually experiencing an identity crisis (and let’s throw in some extra existential crises too, just for good measure). One part of me wants to connect deeply with people, to be confident, to be effortlessly expressive with their emotions, to be comfortable in groups, and above all wants to be validated. The other part gets social anxiety at the mere thought of this level of exposure in a hostile environment. When you walk this tightrope of masking, sensory overstimulation, stimming, anxiety and internalisation for so long, it becomes part of who you are. This constant push-pull of seemingly contradictory identities, the extreme self-awareness and self-deprecation that underlie it, the masked and unmasked selves, it’s all just… me. And it’s emotionally, mentally, and physically tiring to be me.
No wonder, then, that levels of anxiety and depression tend to increase the longer you mask and as your ability to cope gets more restricted. Added to three decades of masking, the last few years had me working and living in a foreign country while caring for two young children (not alone) and enduring a pandemic, which minimised most opportunities that I typically had to process information and cope with daily pressures. I can’t draw back into my internal state as easily as I used to, because my responsibilities and others’ needs receive priority. I cannot sneak off to my room to read, or daydream on the couch, because a toddler might need to be saved from jumping off a table. And I don’t have as many activities as I used to that can distract me from the cacophony inside my brain. So the storm rages on, unabated.
So that’s where I found myself over the past 1.5 years, experiencing more anxiety and depression than ever before, not knowing what to do about it. To be frank, I still don’t know what to do about it, but at least I know more about myself now. Previously, I didn’t know that I was autistic, or that I was experiencing burnout. I was just blaming myself for not being able to feel better, while I should have been blaming society. There’s a feeling of frustration and anger at not having known this about myself for so long, while thinking all along that I am the one at fault, that I’m the one who had to adapt, because the “problem” is with me, with my thoughts. I know now that it is not because of me, it’s because we live in a screwed up society. I know it’s wrong to blame myself, but just as I am othered by the norms of society, I am also a product of it. My internalised ableism constantly berates me: “What’s wrong with me? Why can’t I just act normally? Why can’t I say the right words for once, or stop obsessing over something that’s inconsequential? Why can’t I just decide to focus on the positive things, and be happy?” But now, with a diagnosis, I am making progress with accepting who I am. It took years to get to this point, with lots of painful experiences, tricky thought processes, many frustrating discussions with my very supportive partner, and a few attempts (and failures) to find the correct form of help. I am so glad I did, though, and I’m so grateful for the support I’ve received along the way2.
So…I guess…what now? I know I’m autistic, I welcome and accept the diagnosis. It feels right, it explains everything. I have lived forever with this previously inexplicable struggle, now I know why. But does this help me, going forward? I don’t know. I have to say, I’m afraid of this new unknown. I’m afraid of coming out. I’m afraid of what family, friends, employers, colleagues, and even random strangers will think or do when they find out. Will they treat me differently, will they think this is attention-seeking behaviour, will they scoff at this development, or will they accept it with understanding? Probably all of the aforementioned? I have spent enough time going through the permutations of possible interactions to be thoroughly confused about my fears and hopes. But I also know that I cannot keep the mask on anymore, at least not to the extent that it is currently affecting my health. I need to get to a better space, to take the next step.
What do I want this next step to be? This is a good question. Unsurprisingly, I don’t exactly know. Most often throughout my life when I have experienced difficult situations because of social interaction or information overload or emotional stress, I have been shouting internally “just fucking leave me alone!” All I need in those immediate situations is to be outside of the situation, to not have all of the stimuli bombarding me. But that is not what I want forever. I don’t want to be isolated all the time, I don’t want to be a reclusive being just “enjoying” the company of their own thoughts. I want to have friends, love, joy, togetherness. But it’s also very difficult for me to deal with all the accompanying challenges.
I think what I want first is perhaps just understanding, i.e. for those around me to understand that I might find those situations stressful, or that I won’t always react in a useful or constructive or friendly or accommodating or neurotypical way. And perhaps the next step would be for that understanding to help guide their thoughts and interpretations. Perhaps if they understand that I literally can’t process the (emotionally laden) information in the same way as they do, they will realise why I don’t prioritise things in the same way, or why I might seem judgemental or dismissive or just “off”. And hopefully they will know that I certainly don’t intend for it to be that way. Perhaps if they understand how overstimulation affects my mind and my experience, they will know that my display of frustration or anger is in reaction to all of the simultaneous sensory input, not purely because of what they said or did. Perhaps if they understand that I don’t have much control over my repetitive behaviour, and that it is often a way for me to (subconsciously) deal with information or sensory overload, they will have patience when I tap my fingers on the table for the thousandth time. Perhaps if they understand the often contradictory nature of my masked mind they will know why I might act unexpectedly, contrary to what they might think is my “normal” behaviour.
Maybe a last step, if they have this understanding of people like me and an informed interpretation of challenging situations as they arise and occur, they might update their future actions accordingly. Or maybe this is a bit of a reach? I don’t really expect this to happen, based on my experience of three decades living on this earth. Most people don’t change the way they think or act, even if you explain your reasoning or approach or difficulties time and time again. “Why can’t you remember this thing that I asked of you? Why are you so direct and harsh? Why do you have to over analyse this so much? Why are you focusing so intensely on that single expression that I used? Why can’t you stop making that noise?” I have heard these and similar questions over and over, and no amount of my explanations have had the desired effect of people updating their behaviour. Not lastingly at least. Perhaps part of it is because my explanations have been inadequate, or not informed enough by the ways in which I and other people think? I don’t know, but I don’t expect people to change much. Unless, perhaps, if you put a mental health label on the thing that you are experiencing. And perhaps not, because society tends to stigmatise much more than it will accommodate.
All of this uncertainty, just whirling around in my brain. But, at least now I know. I am autistic.
I am me.
I leave you, now, with this quote translated from the diary of Anne Frank. I read it almost ten years ago, and for a reason that I found inexplicable at the time, it stuck with me, it was the one thing then that made me feel like a person:
I get cross, then sad, and finally end up turning my heart inside out, the bad part on the outside and the good part on the inside, and keep trying to find a way to become what I’d like to be and what I could be if . . . if only there were no other people in the world
If you’d like to be educated about the history of autistic people and how they’ve been treated, do yourself a big favour and read Steve Silbermann’s book: NeuroTribes: The Legacy of Autism and How to Think Smarter about People who Think Differently. ↩