The Autism Spectrum

We've all heard it. The autism spectrum. We all have some idea of what it means. Unfortunately, I had a lot of misconceptions. So did a lot of others. I'll get to why that matters later.

So, what did I think? I imagined a line or bar, maybe with labels like "less autistic" or "low functioning" at one end, and "more autistic" or "high functioning" at the other. Maybe something like the bar in the following picture.

So what is the problem with the bar and its functional labels? I'm going to diverge a little from ND-affirming orthodoxy here, and say there can perhaps be some value in functional labels (bear with me, I'm just an orangutan tossing out some thoughts... ). They are a shorthand for conveying certain information and providing a quick snapshot of the intensity of supports my child or myself might need. I think that was the hope when "high/low functioning" labels evolved into "high/low support needs" labels. There is indeed a difference between having a child who will grow up into an adult who needs day-to-day care versus a child who, with the appropriate self-knowledge and supports, can grow into an adult as capable as any neurotypical person of making their way through the world.

However, as I see it, there are still several major problems with a linear spectrum:

1. How do we measure the degree of autism someone has? We need some sort of measure, a single number or percentage, in order to place a person on the bar. Where does a highly verbal person who struggles with sensory overload and emotional regulation fit? What about a nonspeaking person who communicates eloquently in a written format? What about someone with very visible stims -- is that even relevant to assigning a functional label?

2. The same autistic person can present as either "high functioning/low support needs" or "low functioning/high support needs" depending on the environment.

3. There is a tendency to presume incompetence (to turn a phrase I have heard on its head) with people on the "low functioning" end of the bar, and to deny supports to those on the "high functioning" end of the bar.

Even if we neglect point 1, it's points 2 and 3 above that have been very relevant to Oranguette. If you were to meet Oranguette happily engaged in one of her favourite activities in a familiar environment, you would likely not notice anything at all. Nothing would suggest a need for evaluations or supports. But, place her in a typical crowded classroom, with the corresponding chaos, sensory overload, social whirlwinds, and continual demands for group work (as an aside, I will note that these demands for group work never seem to come accompanied with any training for any of the students on how to divide up responsibilities and negotiate conflict), and a different picture will emerge. Oranguette, if she has not completely removed herself from the classroom or school altogether, will be shutdown off to the side somewhere. Or masking, enduring, only to fall apart into a mess of self-destruction at home.

But she's high functioning, and her autism is barely noticeable, right? Just a bit of rigidity, stubbornness, right? Set the expectation, keep sending her in, exposure will do it, no need for supports, right? WRONG.

It's only when we break down a person's autistic profile in a much more nuanced way that things begin to make sense. The preferred way to do this now seems to be a pie chart, although I think a bar chart would do nicely too. Although I haven't dug into it very deeply, there doesn't yet seem to be any standard for which metrics are shown or how many are used, or how they are measured (is the 50% mark supposed to show the neurotypical average?). It will be interesting to see how this sort of representation develops over time.

Oh, and yeah, I know. The picture below is neither the prettiest infographic ever made (imagine an assessor with a shaky hand!), nor the most detailed. There are nicer and more complete ones out there if you search on the internet for "autism pie chart", for example. But this diagram is mine and it's my blog, so... .

Now things begin to make sense. A multivariate representation of the autism spectrum, if you don't mind a bit of mathematical terminology, provides the explanatory power. We can now see why someone like Oranguette thrives in certain settings and struggles in others.

It also provides a detailed guide to what supports she needs and does not need. Once the root causes can be seen and understood, they can be addressed. Now, there's a lot more that could be said about that last sentence. All of the underlying factors in Oranguette's or anyone else's presentation can be addressed either in neurodiverse-affirming ways or non-affirming ways, but I don't believe a neurodiverse-affirming approach is possible at all without that understanding.

That's why it matters.