Tag Archives: science

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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Filed under ponder

Why I don’t like social touch

Sometimes scientists like to ponder why people on the autism spectrum reject social touch. In one instance, they ran a study that did not actually involve person-to-person touch on a bunch of neurotypical people, after assessing them for autism-like traits. Apparently looking at neurotypical brains gave the scientists all sort of ideas as to what might be going on in an autistic brain. Doing a study about autistic traits without using autistic people strikes me as incredibly odd.

Now, I am not a scientist. I can’t tell you anything about what happens in my brain when people touch me. I can, however, tell you a little bit about my own subjective experiences with social touch, and how I perceive it. I have already talked some about how I have sensory issues and have to be touched in certain ways. Now I’m going to look at it from a slightly different angle.

I have actually been thinking about this topic for weeks now. I know there’s something oogy about being touched by strangers, but I was having a lot of trouble nailing it down. Well, not too long ago I wrote a short story about aspergers, and in it I included a brief comment about the main character rubbing a touch off. I didn’t even think about it very much at the time; that’s just what I have to do when someone unexpectedly touches me. Then, later, it hit me. THAT is a really big reason as to why I don’t like the sort of casual connection-building touching that other people like.

Touch is sticky!

That’s honestly the best way I have to conceptualize it. When someone touches me, that touch sticks to me. It stays there, being all weird on my skin, and I have to rub it off. Or scratch it off. Or claw it off. It varies. Everyone’s touch is sticky, there are no exceptions. So for me, being ok with someone touching me is about being ok with their touch sticking to me. Actively touching someone else is like saying “hey, I like the way your touch sticks to me.” A hug involves getting someone’s sticky on me in places I cannot easily rub it off. Not without doing that whole bear-scratching-its-back-against-a-tree-move, anyway. CLASSY. So if I actively hug you, I’m saying “your touch is going to stick to me in weird places for probably quite a while, and I’m good with that!”

If scientists want to do a study about people on the spectrum rejecting social touch, maybe they should consider having aspies and autistic people as subjects, and have the study involve actual social touch, rather than brushing that may or may not set off sensory issues. Just sayin’. Though if someone could give me a scientific explanation of the sticky thing, that would be pretty cool.

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Filed under issue, personal

Miracle Mineral Solution

So there’s a new health quackery making the rounds.  Maybe you’ve heard of it – Miracle Mineral Solution, or MMS.

It has been touted as a cure for all sorts of things (“AIDS, hepatitis A,B and C, malaria, herpes, TB, most cancer and many more of mankind’s worse diseases”) but now AutismOne has helped them add a new thing to the list – autism.

To put it simply, MMS is bleach.  Industrial bleach that they are telling you to administer orally, or bathe in, or put in your eyes or ears, or administer as an enema to your autistic child in order to “cure” them.  They claim that because MMS has disinfectant properties and the same chemicals can be used to disinfect water, it can also somehow eliminate pathogens from your body and cure you of what ails you, whatever that happens to be.  Or cure your autistic child – and perpetuating this on children is far worse than doing it to yourself (which is really quite bad enough).

To put it less simply, it’s a 28% sodium chlorite solution which the user is supposed to activate by mixing it with something acidic like orange juice or vinegar.  Once that is done, it causes a chemical reaction changing the sodium chlorite to chlorine dioxide.  Chlorine dioxide is an industrial bleaching agent.

Not surprisingly, use of this stuff tends to cause vomiting and diarrhea.  What probably should be surprising but isn’t is that proponents of MMS claim that vomiting and diarrhea are signs that it’s working.  Other people have gone over the scientific aspects of its problems far better than I could, so I simply invite you to read what they have written if you are curious – though admittedly, I would hope that “bleach enema” would be enough for anyone to stay away from the stuff.

Also, if you are interested, there is a petition on change.org urging a ban on MMS as a curative agent (it obviously still has industrial uses).

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Filed under rant