Since February, 1998, I’ve been taking Aspie quizzes, autistic assessments, checking where I am on the autism spectrum on an occasional basis. To be honest, I haven’t always really “inhabited” my Aspie identity the way I do now. For me, it was more important to just be as functional as possible and also think outside the boxes that people seemed to love to put around folks on the autism spectrum.
I appreciate all the effort and time and energy that’s gone into research over the years, but all too often, they just get it wrong. That’s the problem with neurotypical people taking the lead on autism research. And what a theater-of-the-absurd situation it is, in my not-so-humble opinion.
In 2008, I decided once and for all to just BE an Aspie. Of course, that didn’t work out as well as I’d hoped – I got a lot of push-back from people who just couldn’t fathom that I was on the spectrum – and they seemed to think it was a horrible thing. A fate worse than death. Well, possibly… if you have to be surrounded by people who think so, all the time.
I left a lot of those folks behind – or I just quit talking about being autistic with them. They didn’t get it. It was a waste of everyone’s time. And it was very debilitating for me, as well.
I still enjoy taking Aspie quizzes and autism assessments. It’s fun to be reminded, yet again, that somebody recognizes the unique constellation of qualities and traits that make me magically who I am.
But I haven’t been very happy with a lot of the tests, because they are either too skewed towards stereotypical traits of 7-year-old white males from an upper-middle-class context, or they aren’t complete enough. They talk about the issues in very simplistic terms — Yes/No/Not Applicable, or Never/Sometimes/Often/Always/Don’t Know — without addressing the degree to which those traits affect us.
That’s the bit that interests me. Not just if something is present in my life, but what role it plays — does it make me “better” or “worse” at living my life? Does it help me along, or does it hinder me? Is it a mitigating, adaptive behavior (like stimming) that helps moderate my overactive sensory issues, or is it something (like having balance and coordination problems) that keeps me from living my life?
These are the questions that concern me now — and the degree to which all these things exhibit themselves from day to day is a huge piece of it. Because it’s all a spectrum. It’s all variations on the autistic theme. And the variations can mean the difference between an OK day and a really great day, between an OK day and a total nightmare.
So, that’s where I am now. Looking at degrees — and how those degrees affect me. The bubble chart above shows where I’m at today, at this point in the day. It shows the prevalence and intensity of the issues I’m dealing with, which gives me a point of reference to more visually understand my situation.
It’s a picture. And it makes sense to me. I think I need to lighten the background a bit, but that’s the general idea. I’ll be refining this as I go on, so I have an online program that I can just type my levels into, and then generate a nice bubble chart to use. It’s not perfect (yet), but it feels like a very strong start to me.
Ultimately, I think we need more tools for autistic self-management. I mean, “autistic” means basically withdrawing into yourself — we totally know how to do that, and we need tools that leverage that very central aspect of ourselves. And the tools need to be online, as well as accessible via computer (spreadsheets, worksheets, etc). Because that’s something that a lot of autistic/Aspie people can access and feel comfortable with.
Considering how hard it can be to get help — especially when official diagnosis is out of reach financially — we need all the tools we can get for self-care and self-management. The disconnects between Aspie/autistic reality and what’s available in terms of services are gaping and, well, surprising… considering how many of us are articulate and well aware of what our situation is really like, as well as very much in need of help. So, this is a step towards self-affirmation, self-management, self-empowerment for folks on the autistic spectrum who want to take responsibility for their own well-being and quality of life.