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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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  • Everyone is different, everyone he has a different life time of experiences which shape them.

    Your American person has possibly had more therapy as it is more common, they may also have read or watched a lot. I expect it is just a function of time spent on looking at themselves and where their views and issues came from and what they want to do about it, i.e. coping or minimising strategies. Doesn't mean their answer is correct, but at least they think they know where they are.

    A British stuff upper lip, muddle through, introverted cultural difference will no doubt also influence the difference.

    But I am not sure you can be fully educated by someone else. You need to observe yourself because only you know what is in your head and what your emotions and feelings are.

    Since my diagnosis a week ago I have started observing myself carefully. I have succeeded in other things by careful observation, so why not watch myself.

    For example I went to Oxford yesterday and I noted how I felt when getting ready, coping with road closures, find the way, adapting to the changes since last visit, coping with newness, experience of noise and crowds, experience of heat, seeing people, having a meal and following conversations. E.g. heart rate, anxiousness, calmness, facial expressions, etc.

    You also want to look at what to like and are good at, as well as what you are not good at.

    I tend to miss these things because on a day to day basis I have little newness and many fixed routines.

    So what autism means is your strengths and weaknesses and your emotional and physical responses. While there are trends, these are personal.

    I am not sure what they mean by type. 

  • in reply to Stuart333
    Stuart333 said:
    I am not sure what they mean by type. 

    Yeah I’m not sure about this either, but I recently I had an Autistic client tell me she is a “dinosaur-obsessed type of Autistic.” I don’t know if this is kind of like a TikTok trend or what, but apparently there’s different brands of us Autistics, haha.

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