Oh, hello! I didn’t expect to see you here. What’s that you say? You have an appointment? Oh, shit, I remember, now. You’re the one who wanted to talk to me about what it’s like to be autistic, right? Sorry. When we arranged that, I got distracted, and forgot to make a note. If I don’t write stuff down, there’s a good chance it’s going to get forgotten. But not to worry, I’ve got time for you. Come in. But, erm, take your shoes off, please. Oh, and wash your hands. Am I joking? Why would you think I was joking? Oh, you think I’m riffing on the stereotype of autistic people being obsessive about handwashing and hygiene? Haha, yes. But you’re washing your hands, if you want to come in. Welcome to my world. Take a seat. Not that one, that’s mine. Would you like a drink? Here you go. No, on the coaster. Thanks.
So, you want to know what it’s like to be autistic. Well, I’m not sure how much I can help you with that. What? Oh, no, I’m definitely autistic. But the thing is, and this is important… I said, it’s important; are you going to write this down? The thing is, all autistic people are different. You’ve heard the quote, right? You know the one. If you’ve met one autistic person, you’ve met one autistic person. I think of it like this: Every autistic person’s autism is as unique as a fingerprint. Yeah, we might seem similar from a distance, because we have so much in common. But once you get into the detail, the individual profile is distinct enough to differentiate and identify someone in a court of law. I can only tell you what it’s like to be autistic Darren Scothern. If you want to get that broad range understanding I think you’re looking for, you’re gonna have to do these interviews with a lot of autistic people. Maybe when you’ve done it with hundreds of us, you’ll begin to get a gist of it.
Why do I use the pronoun us? Well, one thing I’ve found is that the autistic community is a community. There is often a sense of deep connection and shared experience between autistic people. And let me be clear, I only know of two autistic people who I interact with regularly on a face-to-face basis. Two. But I’ve engaged with countless autistic people online. That’s way easier for me. Online interaction is comfortable. Although not live chat, and not that skype-type malarkey. I hate that. It freaks me out. Nope, Twitter, or Reddit, with messages you can read and write at leisure, and you can pick up and put down the conversation when you have the relevant spoons for it, that’s the way to go, for me. And the online interaction I have with my fellow autistic folks is priceless. I am at home in that online environment. What am I talking about spoons for, you ask? You’ll have to google that. (Other search engines are available.) But anyway, let’s get on with the talk. You want a bathroom break, you say? Couldn’t you have gone before you came out? No, it’s fine. It’s fine. No, not the main bathroom, use the other one, down the hall. There’s handwash in there. And sanitiser.
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Am I an expert on autism? No, not at all. I’m learning a lot about being autistic, though. And especially about being autistic me. I love it. I love being autistic. How can I love being autistic, when I have so many difficulties? Simple. It’s about authenticity. It’s about me really finding out who I am, embracing it, and being the real me. I got an official diagnosis long before I knew what autism was. I had this long assessment, and that was tough. I had to be honest, and that shouldn’t be a bad thing. I value honesty highly, and always try to be as honest as I can. With one exception. I had spent the first five and a half decades of my life not being honest to myself about myself. I mentally denied my real self, tried to pretend it wasn’t true, and then worked damned hard at being someone I wasn’t, so that I could be like all those people out there who were *cough, cough* normal. I had to try to abandon all that camouflage for my autism assessment.
I remember two things in particular that felt like a release when I spoke about them during my assessment. The first was my sense of utter alienation in all areas of my life. The people I interact with, my environment, the things I have to do… I’m kind of outside it all. It was as if I was an alien who had come to Earth disguised as a human, and had then suffered from some catastrophic amnesia so I’d forgotten I was an alien, and thought I was human. But something… something wasn’t right. In fact, something was wrong. Really, really wrong.
The second thing was my admission that I had a combined superiority and inferiority complex. This is a hell of a thing to admit to, but I’d always felt most of the people around me were… not very bright. Some things were completely obvious to me, but other people weren’t seeing them. In terms of thinking about things, the way one sees the world, and the conclusions one draws, I’d always felt most other people were, in a sense, beneath me. That is pretty awful, and of course, I was wrong. What I was actually experiencing was a disconnect from other, non-autistic people, in the way I experience the world. It’s been hard, learning that. But at the same time, I also felt lesser than everyone around me. A lot of the time, I simply felt worthless. I couldn’t fit in the way I wanted to (or thought I wanted to). I couldn’t navigate relationships. When I made an emotional connection with someone, my normal logical, pragmatic self evaporated, and I ended up being driven by erratic, shifting emotions I didn’t understand. My autism assessment, and subsequent diagnosis, opened up a gateway to a new world for me, but I didn’t walk through, initially. I kind of just stared at this open gate, thinking, what the fuck? I will be forever grateful to the specialist who assessed me and gave me that diagnosis. But once I walked through the gate into Autistic Land, I took a trip along a spectrum-brick road to a place where I now abhor the term diagnosis in relation to being autistic. It’s weird. Diagnosis, including self-diagnosis, is so important to us. And yet we need a new term for it. I prefer identified, but we have a problem there because the term identified is being gradually demonised by the far-right anti-woke culture in our society. However we describe ourselves, we’ve got a long fight before we are no longer just pushed to the periphery of human society and culture.
Hmm. I’m still not sure I’m explaining what it’s like being autistic, though, because you’re looking confused. And a little bit frightened. I sometimes have that effect on people. Let me try some more…
I’m still learning about being autistic. Some traits are common among autistic people, and for a long time I assumed I didn’t have many of those traits. But as time goes on, things occur to me and I think, oh yeah, that thing I do… it’s autistic. Take stimming, for example. You’ve heard of stimming, right? You have? Go you, doing a bit of homework. What do you think it is? Hand flapping, rocking? Yeah, that’s in there, but if you think that’s all there is to stimming, it tells me your homework has been superficial at best. I’m guessing that if you’ve seen an autistic person getting flappy, or rocking, it’s made you feel really uncomfortable, right? Why? What do you think is going to happen? Do you think you’re in danger, or something? Seriously, what’s the matter with you? Stimming comes in many forms, and non-autistic people do it all the time. But they don’t call it stimming. It’s easier for non-autistic people to latch onto the term stimming, and use it as a label to keep autistic people as other. But have you ever seen someone jiggling their legs in the doctor’s waiting room? Or the nervous person clicking their pen in a meeting? What about cracking your joints, biting your nails? All stims. Certain stims are very common among autistic people, like spinning, for example.
The other day, I was at my desk, and had a quiet moment in what had been an otherwise shockingly busy day. I took that time to have a look at the work I had in front of me, so I could prioritise, and get myself organised. Just a few moments of thought. My water bottle was on my desk, and while I was thinking, I started to spin my bottle on its vertical axis. I love the sound it makes as the spin starts to falter, and the bottle begins to settle. As I watched it, my jaw fell open. Two years into my diagnosis, and I suddenly realised I’ve been spin-stimming since childhood. As a kid, I loved to spin a coin on a table, and wait for the coin to slow down and, oh man, that noise it makes as it comes to a stop is so satisfying. Also, laying a pen on a surface, and spinning that. Not quite as satisfying, as it doesn’t have the same decay of movement, and accompanying sound. But yeah, I suddenly realised I’d had this stim for as long as I can remember, and I just hadn’t seen it for what it was. Still learning, see? It was last year I realised I had another stim, a little activity that I think some people have found weird, but others have said is cute and endearing. To be honest, I don’t give a crap what they think. It’s my stim. Mine. If you don’t like it, or if you don’t like seeing someone rocking or flapping their hands, the problem, my friend, is with you. Not us.
Stimming, well, that’s just one of the shared experiences that bond you with the autistic community. In the autistic community, we can talk to each other safely. Most of the time, at least. In the online spaces where we relate our shared experiences, sometimes outsiders push their way in; non-autistic people telling us how to be autistic, or even worse, telling us that we are not autistic because we are not like their autistic nephew, or cousin, or whoever. These people are ableist bullies, who have no concept of the full spectrum of autistic individuality. They are dangerous, they cause real trauma, and they need to get out of our spaces. We need our safe spaces.
Safety is important to me. As an autistic person, I spend most if not all of my time feeling like I am in danger. I feel threatened the by non-autistic world, and specifically the non-autistic people who will not engage equally with us, but will other us instead. This looming, constant threat is one of the reasons people approaching an autism diagnosis, or who have been recently diagnosed, come onto autistic forums anonymously, and ask if they should come out as autistic to friends, family, co-workers, and so on. There is genuine fear and worry. And with good reason, too. Since coming out, I have experienced all kinds of discrimination. Relationships have faltered. I have been treated as less competent. I have been infantilised. I have been mocked. I have been insulted. I have been called high-functioning (a horribly ableist label), and yet I have been told I need special help because of my autism-related problems. I live in fear of the stress of navigating the non-autistic world, in workplaces, and public places. I live in fear of being out of work, and not being able to survive. I make plans to insulate myself against the dangers of finding myself more completely isolated in this neurotypical world. Every time I encounter a non-autistic person who knows I am autistic, I have to try to evaluate what they think of me, and assess whether this is a friend, an ally, or someone who will, consciously or unconsciously, discriminate against me in harmful ways. The thing is, I’m autistic, so I have little or no chance of being 100% correct in my evaluation, because we are on different operating systems.
Interlude: A brief message
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So, has that given you any insight at all into what it’s like to be autistic Darren Scothern? Do you need more? Do you need me, maybe, to tell you about odd little conversations with neurotypicals who think they are bonding with me by asking knowing questions about autism?
“I bet you like things all neat and organised, don’t you, Darren?” Me, internally; what kind of fool wouldn’t?
“Are you a perfectionist, Darren?” No, I’m too pragmatic to be a perfectionist. Also, my attention wanders. I’m often thinking several steps ahead of what I’m doing. Furthermore, unlike the stereotype of autistic people, I don’t focus solely on small details. In fact, I’m a big-picture, conceptual thinker, and I have to work hard to focus on detail, both mentally and visually. This causes me some pretty major problems. I’m extremely prone to typos, which is a damning Achilles heel for a writer. When scanning my own work, like anyone I can miss typos, but it’s especially problematic for me because of the way I process the written word; always absorbing the big picture of meaning, and my brain filling in blanks and sight-correcting errors more than is the case for most other people. There’s a good chance there’s some mild dyslexia there, I think. I have similar issues with strings of numbers. For example, with phone numbers, I can only read them if I mentally process them in a way that creates a pattern. Some strings of numbers are easy to do this with, some not so. Some are almost impossible for me, which means having to concentrate carefully on slowing down my brain and eyes, and writing the numbers down in shorter strings, hopefully in a way that can be turned into a pattern. I have to make a string of numbers fit into a kind of concept to be able to make sense of it. This is, I think, one of the reasons I’m not good at maths, so you can take that autistic stereotype and… calculate it.
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I’ll tell you this, too. It hurts. I’m not just talking about the very real emotional pain of trying to live in the neurotypical world, either. A common way people describe being autistic is that we experience the world differently from neurotypical people. That much is for sure. Like all human beings, we experience the world through our senses. In fact, to be entirely accurate, none of us, autistic or not, directly experience the world at all. We experience a mental construct that is a result of our brains’ interpretation of sensory data. You could say I see the world through spectrum tinted spectacles. Sensory data includes what we feel from our own bodies. I’ve recently stated that I have been in pretty much constant pain since the beginning of December last year. And that is true, but it doesn’t tell the whole story. Because what I actually mean when I say it, is that my pain has been more intense over those months. The real truth is that at some level I’m always in some kind of pain or, on a good day, discomfort. I’m aware of my body in a way probably only other autistic people can identify with. Although, I suspect I don’t feel this quite as intensely as many other autistic people. But it’s more than enough for me. Pain, discomfort, never feeling right. Moment by moment, day by day, year after year, constant. That is the signal my brain is generating as it interprets my sensory data from my body.
Got enough yet? You don’t look too happy. Oh, wait, is it because some of the harsher realities of life as an autistic person are a bit more of a downer than you were expecting? And it all started off so light-hearted, didn’t it? Tell you what, would you like me to protect you from taking away all that autistic trauma with you, and make it into a happy sandwich instead?
As I’ve embraced being autistic, and engaged with the autistic community, I’ve found a sense of belonging. I found my people. We laugh together, get angry together, and rage at the world that so often seems to hate us and wants to hurt us, together. By seeing so much of myself in other autistic people, and seeing so much of them in me, and by taking part in that shared experience, I’ve found satisfaction and contentment that is helping to stabilise my mental health after the many, many years of the depression and anxiety that sprang from not knowing I was autistic. Being part of the autistic community is soothing, and indeed healing.
That’s all for this week. Until next time, take care, be good, stay proud.
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.