How does it actually feel to suddenly be told you're autistic?
I’ve been asked this question a lot since I had an autism assessment earlier this year. I’ve asked it of myself a lot too. It’s taken me quite a while to answer it because (a) it’s a harder question to answer than it looks and (b) writing about yourself is tough, man.
After my diagnosis, I really struggled to make sense of my new status. I had so many questions and didn’t really know where to find answers. I found a lot of information online from expert sources and medical journals but they felt dry and impersonal. They provided information on what autism is, but didn’t tell me what I wanted to know: how to live with autism.
I once read some writing advice online that said something like: write the story you’d want to read.
This Substack is inspired by that. It’s the story I would have wanted to read when I was first trying to make sense of being autistic. I believe writing about my experience could be useful to neurodiverse people, or people who suspect they may be neurodiverse, to see similarities in my story and feel comforted, or even motivated to get their own assessment.
I also believe it can be useful for neurotypical people to better understand neurodiversity - particularly if they have a loved one, friend, colleague or someone they manage professionally who is neurodiverse. By the end you should come away with an understanding of (at least my experience of) autism.
First off, why did I think I needed an autism assessment?
Before I got the assessment, I had a sense that there was something different about how I processed information and saw the world. I know we all feel like we have a unique perspective, especially when we’re growing up. The sense that we don’t belong or are out of place, but this sense of difference always felt deeper than run-of-the-mill teenage angst. I had challenges that others didn’t seem to. Challenges that only I noticed and kept hidden because, as much as we’d love to be different, when you’re concerned you might be truly different, you want nothing more than to fit in. I ignored my worries about being different but kept them on a low simmer. The challenges I had (or those of any neurodivergent person) when viewed in isolation don’t add up to something to panic about. It’s only when added together they reveal a pattern.
What were the signs?
While it’s been difficult to be open about this stuff, I want to give full clarity on what the experience of autism is actually like and the signs that made me suspect I was autistic. They’re not unusual or unique experiences that are reserved only for autistic people. They’re completely everyday human issues, and their ubiquity is why I never connected them to being autistic.
I find socialising draining.
And I’ll need some downtime to recover. Taken on its own, this isn’t anything to set off alarm bells, as any introverts (or people over 35) will attest to. But I noticed over the years that I’d need to really sequester myself alone to decompress after having a lot of social obligations.
I have sensory issues.
I’m sensitive to certain fabrics, textures and visual patterns. But where it’s most noticeable is my sensitivity to noise. But not all noise. For me, it’s unpredictable and chaotic noise that is most distressing. Like the jittery racket of a packed bar. The clink of glasses, the sudden roars of laughter, the tinny music. I can’t filter that out. (Though I do enjoy loud, live music, probably because it drowns everything else out and let’s me focus on one thing. The music. This might be related to Monotropism, which is a theory of autism that says autistic people prefer to process a small number of inputs at a time).
A feeling that I need to be “on” or perform a role.
This is basically what masking is, though I never knew that’s what I was doing.
Stimming behaviour.
I always had little rituals or movements that I couldn’t quite explain and found it embarrassing and distressing.
A need for structure and routine.
It’s taken me years to realise how much I need this and how helpful it is. I just didn’t really connect how I felt, or the frustration I had, to such a simple requirement.
I struggle with small talk.
I understand the purpose of small talk but struggle to engage in it because it sounds false to me. Like it’s an unnecessary performance we must engage in. My strategy has always been to rush past it, and to crack a joke to lighten the mood and move us past small talk.
Relying on alcohol to “fit in” socially.
This is the big one. And I’m sure something a lot of late-diagnosed neurodivergent people will have experience with. But again, taken on its own, it’s not something unique to autistic people. We all rely on Dutch courage at times.
It’s really a million little things.
Every autistic person will present differently and even contradict some of my experiences - which is why it’s often so hard to make the connection to how you feel and being neurodivergent.
I never really knew any of those little foibles were part of my autism experience until after I got the assessment and was like “so that’s why I did all those Irish goodbyes from obnoxiously loud bars?” I didn’t connect the dots on any of this until I really started having the feeling that something wasn’t right. For me, the turning point was Covid.
The turning point
This is going to sound weird but I liked lockdown. I was focused. I felt calmer. I had a nice balance and routine. It was only after lockdown ended, and my new routines had to be abandoned, that I really noticed the anxiety and exhaustion. Occasions I’d been able to white knuckle before - social obligations, loud restaurants, bars, the commute - were more of a struggle. Or at least I noticed the effect they had on me in a way I hadn’t before. It was all the same stuff I’d been doing for years. Why was it now so different?
One crucial thing had changed. I wasn’t drinking alcohol. For years I’d wanted to cut down on alcohol but living in London, my social life revolved around it. It’s Thursday evening - let’s have a pint. The pitch meeting went well - let’s have a pint. It’s 18 degrees Celsius outside - let’s have a pint. But I was really fucking tired of the never ending drunk-hungover weekly cycle. Three day hangovers weren’t worth the fleeting moments of transcendence on some dance floor.
During lockdown, without the need to lubricate social occasions, and with a better routine and sense of balance, I felt I wasn’t really enjoying alcohol anymore. Nor did I really need it. When the world opened back up, the places that had once seemed exciting were actually kind of boring. But I was still habituated to drinking socially and it was then that I realised I was relying on alcohol to get through social occasions. I was self-medicating with it to manage situations that my autism made uncomfortable. Something had to give.
Around that time I started hearing more about undiagnosed neurodivergence and looked into an assessment.
Briefly, what is the assessment?
An autism assessment is typically three one-on-one sessions with a trained psychologist during which you collaborate on an in-depth conversation about your life and your challenges, after which they can make a diagnosis. I was lucky enough to be able to afford to get one privately that wasn’t as expensive as some others I’ve seen. Message me privately if you want to know more.
So what’s it actually like to find out you’re autistic?
The day I got the results and heard the words “you’re autistic” directed to me for the first time, I had that kind of numb dissociation that happens when you get important, life-altering news. If it was a film there’d have been a slo-mo zoom effect like in Jaws when Chief Brody sees the shark for the first time. It was like the universe had shifted ever so slightly and, though I was there in that moment as it was happening, I was also not there, a part of my awareness was somewhere else, filing this moment away in a drawer marked “Shit You’ll Remember For The Rest Of Your Life”.
When the psychologist delivered the news, and once the floor stopped spinning, there was an undeniable feeling of relief. What I had suspected was now confirmed. I’m not just an oddball lads, my brain is actually different! I have the answer now, case closed. But it doesn’t really work like that. You’re relieved for about an hour but when that wears off you just have more questions.
Some serious ones: What happens now? How do I tell people? Will it affect how people see me?
And some not so serious: Can I actually use this to get out of social events I have no interest in going to? Can I go full on Larry David?!*
*Yes. Yes, I can.
To answer the serious questions I’ve been forced to become a kind of archeologist, excavating the remains of my own past, dusting fragments for evidence to figure out what’s actually me and what’s the self I constructed to mask the discomfort and awkwardness I felt in my life. Are they both me? Are either?
There’s also the feeling that I’m now a “thing”, a label, a combination of symptoms on the DSM-5, a pathology. I’ve always been suspicious of labels, how they’re deployed by those in power to compartmentalise and control people, and the constraint of being identified merely for one aspect of your being. I’ve struggled to accept autism the label, because I worry it’ll be limiting or set expectations of how I am and how I should be viewed. And autistic people are so much more than just that. I want to be clear, as a lived experience and part of who I am, I fully accept and embrace myself as autistic - but I see it as a part of me. Not the defining characteristic. (I mean, I’m also a bit of a dickhead at times but would hate to have that label foisted on myself as my defining characteristic. Dickheads of the world unite!)
But I can’t lie, it’s also kind of thrilling. I’m excited by the possibilities that having a fuller understanding of myself will bring. I’ve already been able to make beneficial changes: I manage social obligations in a way that avoids becoming burnt out. I advocate for myself better in work situations (it turns out you can say no to things you don’t want to take on, who knew, eh?). I don’t really drink anymore. I adhere to a routine that works for me. I have some objectivity in situations that would previously have caused anxiety. I can step back and ask myself, is this scenario actual anxiety inducing, or is there some expectation here that I find tough as an autistic person? Has it scrambled my routine? Is this place too loud? Is there a need to be “on” or “perform” and I worry that that performance is going to cost me a bit of burnout? Approaching situations with that understanding of how my mind works and its challenges has been helpful and lets me manage situations in a healthier way.
So how does it feel to find out you’re autistic? Let me leave you with an analogy.
Imagine you’re doing a jigsaw puzzle but you don’t have the picture on the box to help you put the pieces together. In fact, you don’t even know there is a picture on a box that can show you the correct way. You don’t really know where anything goes, what it does, what the different shapes mean or how they fit together. You’re just winging it and hoping it’ll make sense. Then one day someone comes along and shows you the picture on the jigsaw box. You look at it for the first time and it doesn’t look anything like what you had pictured you were assembling. You look back over what you’ve built so far. It’s a bit all over the place. You actually managed to fit some pieces together well but they’re upside down. Some don’t fit but you’ve kind of jammed them together anyway. And the rest are just splayed about at random. You’re now faced with a choice. Do you smash all you’ve built to pieces and start over again from scratch to look like the picture on the box? Or do you try and piece it together from the scattered bits you have, even though they’re all mashed together in a weird configuration? It’s a hard choice…but one you have to make.
That is how it feels to suddenly find out you’re autistic.
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