Science, Culture, and Differences

This is actually two or three different topics that I just can’t seem to separate enough to make them into separate posts. They’re all small enough, though, that I think one post going over the whole thing won’t be too overwhelming. However, I confess, I fear that my thoughts are still too jumbled and mashed up to be able to make a clear and coherent post. I’m going to try anyway. We’ll see how it goes.

Let’s start with culture. Autism culture. Specifically, the “autism is autism” part of the culture. By that I mean, the idea that all the different “types” of autism spectrum disorders are, in the end, simply autism. Classic autism, Asperger’s syndrome, PDD-NOS, are all autism and that’s all. Not everyone agrees with it for a wide variety of reasons, but it’s common enough to be a thing. Many people are quite passionate about it and quite firm in their “autism is autism” stance.

Next, there’s the DSM 5. As it quite well known by now, it merged various similar-but-distinct diagnoses into one – Autism Spectrum Disorder. I’ve been asked what I think of this change, and honestly, I’m not sure what to think. It certainly fits with the ‘autism is autism’ culture we have going on, but does it fit with the science? Well…. there is no science. Not really. Not yet.

Right now, while we generally understand autism disorders to be neurological in nature, we don’t really understand what is actually happening. We barely have any idea what the differences are, and the research is very new. Diagnosing autism relies entirely on behavioral markers. I really don’t want this post to get too far into the debate about whether or not they are “really” the same or different. Mostly, it seems a little of both. There are differences, there are similarities, and it all centers around a developmental delay in social processing and understanding. So there’s that. Are the differences distinct, above and beyond the similarities? We don’t know.

Then there’s the science. It’s just getting started, and admittedly, I find it fascinating. I rather wish I could participate in a study where they looked at my brain using any number of things (MRI, EEG, whatever else) to see how my brain is distinct, what makes it an ASD brain rather than a neurotypical or allistic brain. That would be so cool.

Anyway, I was going to talk a bit about a couple of studies that I’ve heard of. For instance, there was an EEG study. It was small, too small to really form strong conclusions or change how we diagnose or anything. But it was interesting enough that scientists want to do more. To put it briefly (as I understand it) scientists used an EEG machine to look at the brains of autistic children, children with Asperger’s, and neurotypical children, and compared the results. The results were, basically, that Asperger’s and autism brains are more like each other than like neurotypical brains, but that the two are still sufficiently distinct as to be noticeably different on the EEG.

There was also a small, exploratory study that looked at a small number of autism spectrum brains. To quote the wired article, “Now, a new study adds an intriguing, unexpected, and sure-to-be controversial finding to the mix: It suggests the brains of children with autism contain small patches where the normally ordered arrangement of neurons in the cerebral cortex is disrupted.” This study was very small – it involved post-mortem (which is really sad, right there) brain tissue from 22 children, 11 at varying points on the autism spectrum, and 11 as controls. The conclusion was, basically, that autism brains are distinctly different from neurotypical brains, regardless of “which” autism it was. They were also different from each other, in ways that basically means more study is needed.

I don’t really know what this all means. It’s all very interesting, and I like looking at the neurology, even if I don’t really understand it. I worry about the science of autism and the culture of autism coming into conflict if the scientific results fail to support the culture, just as much as I worry that the science of autism will careen off into an icky, “lets get rid of autism” direction. On both ends, I worry that an insistence on unity OR an insistence on distinct categories will lead us towards failing to see the individual needs of each person. People who are against “autism is autism” will point out that people on varying points of the spectrum need different types of help. This is often true. However, even people within the various categories often need different types or different intensities of help. When it comes to support, it all has to be individualized. When it comes to the science… well, we just really need to know more.

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