Slipping in and out of autism

I have a friend who was diagnosed with Asperger’s Syndrome some years ago. He didn’t agree with the diagnosis and felt a bit like it was just imposed on him because he was in difficult circumstances and the psychiatrist needed a quick fix of some sort, something to explain away problems with. This came up when I told him about my own newfound diagnosis – before then, I had never heard anyone but me talking about Asperger’s. I remember feeling exulted about his mention of it, and then a bit disappointed when he said he felt misdiagnosed and wanted to get rid of the label. I felt I could relate to him in a lot of ways, and I really wanted him in this club that any label automatically creates out of the group of people who get it. (Not sure why – maybe I just wanted to add the togetherness, the community, of ‘we are like this’ to our friendship, the same way that people can bond by supporting the same football team or liking the same music?)

Later, upon reading something I had written for this blog, he commented that he felt he wasn’t aspie because the characteristics apply to maybe 10% of his behavior – he’s autistic about 10% of the time, when he’s at his most reclusive, absent-minded etc. I compared this to my own feelings and found that conversely, I feel neurotypical about 10% of the time – when I’m at my most sociable, sharp-minded, relaxed etc. So I think diagnosis is not so much an absolute as it’s about percentages, because we all move back and forth on our own little autism (or NT) spectrum. Most of us can probably be found to exhibit autistic traits once in a while, because personality isn’t a constant. It’s affected by mood, stress factors, general life situation etc. And taking that into account, when I look back, I’d say I was at least twice as autistic 10 years ago as I am now.

(This of course also because Asperger’s Syndrome is in some ways a kind of retardation, rather than a constant, qualitative difference. We learn the same stuff, but slower, (probably) because we can’t create neurological shortcuts the way NTs do and so are always taking brain detours to get to the destination.)

Sometimes when I tell people I have Asperger’s Syndrome, I can see in their eyes that they don’t, or that they find it really hard to, believe me (and tbh, the fact that I can see it in their eyes speaks against my claim, too). They’ll say things like “I can relate to everything you’re saying, I feel like that sometimes too”, and “You seem perfectly normal to me”. And sometimes when I then try to ‘prove’ that I’m aspie, I find myself grasping back to things I did when I was younger, because it was just so much more obvious then – I even find myself wondering if maybe I’m not autistic anymore. ‘Cause back when I was 17, I was just doing so much more blatantly autistic stuff, and now I’m all streamlined and socially competent and able to relate to people and see stuff in their eyes.
But the thing about autism is, it’s described from the outside, and you can’t really see neurology from the outside. Especially not the kind of neurology we’re born with and will die with. You can’t see how much work it takes for me to be in a room full of strangers – and I can’t give you a more tangible comparison to how much work it takes for you than to say, “It’s like, really hard!”. An NT may get stressed out from the noise and smoke and want to go home and figure I’m just describing the same thing. And maybe I am. Because all diagnoses can be seen as an extreme form of a normal personality. It’s not a diagnosis to be someone who’s a little paranoid, a little skizofrenic, a little depressive, a little autistic. But get to a certain scale of paranoia, skizofrenia etc., and it is a diagnosis. I don’t think there’s really any difference between ‘normal’ people and ‘crazy’ (the quotation marks are very important here) people beyond that. So yes, most NTs can relate to what I’m saying, and yes, I know how to act normal. That doesn’t mean I’ve been misdiagnosed. I’m not not human. I’m just a more autistic person than I’m an anything else person.

I find that more and more often, I’m using the term ‘autistic’ to describe the mode I’m in. (I won’t say mood – I’m not sure ‘autistic’ can really describe a mood, since it’s a description of something that can contain all moods.) For instance, today I went to a gathering with a lot of people I had never met before, and on the way there, I found myself thinking “shit, I’m really autistic today, this is a bad day for meeting strangers”. My muscles were tight so my body language was more difficult to manage, my face wasn’t really working, everything was a bit noisier than usual, I was inside the little room in my head and finding it hard to focuse on the stuff around me, and I really wished people wouldn’t talk to me and demand my eye contact. In short, I felt the same way I always felt 10 years ago, and I struggled to get out of that mode and into a more newly adopted “I can totally handle this being social thing” mode. I used some breathing, concentration, and stretching exercises and actually did manage to get that little bit less autistic for the meeting.

My guess is that some non-autistic people experience all the symptoms I just described too, but only under episodes of heavy duress. That state of mind and body seems more like a normal human reaction to stress than like a core definition of Asperger’s Syndrome. I wonder if for aspies, it’s a reaction to stress the same way as for NTs? Or is it something more benign for us? I remember my mother used to always stress how bad it was to be alone, and how I must be miserable when I was spending entire weeks alone in my room. If that’s what causes misery for (some? most?) NTs, maybe an autistic’s positive state of mind can be mistaken for stress and/or depression? Honestly, I’m not entirely sure what’s what in myself – some kinds of sadness are delicious, and some kinds of unable-to-handle-everyday-stuff are pleasant, and I don’t know where to draw the line between what was definitely depression (considering suicide is not ever pleasant) and what’s a nice kind of I-feel-like-being-sad-and-shy-today.

I figure everyone could use the adjective ‘autistic’ for themselves once in a while, the same way that ‘depressed’ or ‘stressed’ is often used not to describe diagnosis, but as a much milder term for how a person’s feeling. (I actually got into a miscommunication with my doctor about that one time – I said that my acne was probably due to stress, meaning a nervous fucking breakdown, and she nodded and gave me some kind of lotion for treating it without even going into the stress factor – took me all day to realize she wasn’t hearing the same word I was using.) I know some people get really pissed when a diagnosis is watered down into an everyday mood term, but I really like it when that happens. Because it familiarizes and humanifies the condition. And I like it when people who don’t have my diagnosis can relate to me. As long as they’re not using it to tell me I’m not really autistic.

But maybe it’s just their way of saying that they want me in their club.


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