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Does anybody here feel like they actually understand what it means to be autistic?

Oran G. Utan

I was diagnosed a little over 20 years ago. I've spent pretty much my whole life trying to figure out what being autistic actually means. I still can't really define it even for my own sake. I talked a little to an American autistic person today. It was a bizarre experience, because they seemed to really understand their own condition. For me, autism has always been treated like an utter enigma even to professionals. I believe I am autistic, and I've been formally diagnosed. But I couldn't begin to explain what that means, or how it affects my life. I just know that I don't cope with stress well at all, and prefer living in a bubble to having varied life experiences.

I was asked what kind of autist I was, as if that's something I could possibly know. I feel like I've been living in a fog, and am only now learning that it might not be because autism is inherently vague and mysterious, but because I was never properly educated on what my own condition is. I'm realising that at 32 years of age, I don't understand the first thing about myself. And that maybe that's not the universal experience for autists that I thought it was.

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  • I wonder if I'm a bit of an outlier. I was diagnosed AuDHD as an adult 23 years ago and did NOT accept I was Autistic until last year. A big problem at the time was a complete lack of any support, explanation or information. I had sought an ADHD diagnosis and figured they just tacked on Autism because they assumed it would apply to anyone working in IT! I just felt stereotyped, so I rejected the idea. I was put on stimulant medication for ADHD and that was it in terms of "support" for the next 20 years or so.

    I continued living in a "fog" and didn't understand myself and I just sort of muddled through life until I burned out last year. It wasn't a new experience for me, but I never understood what was causing it. This time, I decided to change how I related to being ADHD. I stopped fighting it and started accepting it more. That helped a lot, but I was still struggling. I decided to look again at my Autism diagnosis to see if there was actually anything to it.

    Nowadays, there is a lot of really good information available on Autism. I've spent a year deep-diving into Autism as my new passionate interest. There are lots of first-hand accounts from wonderful Autistic people in podcasts, blogs, books, websites, forums, etc. I had always thought I was somehow uniquely broken, so I was astonished to find that Autistic people are *exactly* like me. The professionals got my diagnosis right all those years ago after all. What helped me more than anything else was my self-directed (and ongoing) education on all things Autism, accepting I am Autistic, and just giving myself a bit less of a hard time.

    [INFODUMP WARNING!] One thing that has been going round and round in my head all year is a script (very Autistic) where I try to explain to someone (perhaps a family member) how I might differ from them. I always settle on explaining the difference between polytropism (them) and monotropism (me). I like how predictive monotropism is as a theory and how it describes a different brain, rather than a disordered or deficient one. My brain is very good at doing one thing at a time, and will do it with great intensity, but it gets overwhelmed if I try to make it do several things at once. For example, I can listen to the words a person is speaking, or I can watch their facial expressions and body language, but I find it hard to do both at the same time, so I tend to break eye contact when I'm listening. I can consciously force myself to hold eye contact (i.e., mask), but it requires much greater concentration and is stressful and tiring. ... Then my script begins to develop into something more elaborate and there I am lying awake at 4 am (again) wondering if I'll ever get back to sleep! It's a work in progress. I recommend learning about monotropism, though.

    So, do I know what kind of Autist I am? No. I haven't got a clue. I don't even understand the question. I don't understand what is meant by "kind". I don't have enough context to go on. Perhaps I could just answer with "level 1" or "average" or "not very sporty", but is that the kind of answer the questioner was looking for? This is something that I think I won't lose much sleep over. My education, OTOH, will continue. I recommend it.

  • in reply to Damojo

    The script: I've spend many an hour staring at myself in a mirror offering up sentences to most adequately explain something simple, and then with the comment " are you even listening to me?" and then to tweak it and tweak it for maximum impact, as if the power of the expression in itself would make them listen, when of course neurotypicals can't even conceptualise that what I am saying has such great importance that I've rehearsed it ad infinitum to perfection only to have that immense power cast off and wasted by a shrug or an inflected eyebrow which feels as dismissive as a finger to their stupid temple. Rolly eyes.

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  • in reply to Damojo

    The script: I've spend many an hour staring at myself in a mirror offering up sentences to most adequately explain something simple, and then with the comment " are you even listening to me?" and then to tweak it and tweak it for maximum impact, as if the power of the expression in itself would make them listen, when of course neurotypicals can't even conceptualise that what I am saying has such great importance that I've rehearsed it ad infinitum to perfection only to have that immense power cast off and wasted by a shrug or an inflected eyebrow which feels as dismissive as a finger to their stupid temple. Rolly eyes.

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  • in reply to Hazel_XXY

    Yeah, that's why I think I keep going over and over things in my head. Every time it just ends with my imaginary victim giving me a shrug. (Arghh! Body language!)

    That aside, I do find it a helpful way to process and absorb everything I've been learning about Autism. If I never speak those scripted words out loud, they still serve some purpose: they explain me to me.