Why Research On Autism Is Still In the Dark Ages

Part 4 of My “What Is Autism” Series

So, given that it’s the Twenty First Century, and humanity has progressed so much technologically, why do we still have such a poor understanding of what autism is? Well, part of it is that our understanding of the human brain in general is in its infancy, because the human brain is the most complex machine on Earth. So we may never gain a full understanding of any type of brain, autistic or otherwise. However, we could come much, much closer to understanding autism, and what is required for this isn’t all that hard. We simply need a lot less neurotypical researchers, and a lot, quite a lot, more autistic researchers.

Imagine a documentary about traditional Irish music. Imagine if that documentary consisted only of interviews with classical musicians, and the entire documentary was written by classical musicians. You would expect the information on traditional Irish music to be wrong. You would expect the classical musicians to have their own biases about traditional Irish folk music. And in the end, what would even have been the point of watching it? You would not be anywhere near illuminated on what Irish folk music is. Well, this is what autism research consists of. It consists of neurotypical researchers bringing their own biases to the subject of autism, while an autistic researcher could have gotten more work done. Autistic people are considered not even capable of describing their own mindset, personality or way of experiencing the world.

I’ve talked before about the Sally Anne Test:

https://en.wikipedia.org/wiki/Sally%E2%80%93Anne_test

This test is supposed to prove that autistic people lack empathy. But any autistic person, not just a qualified autistic researcher, but an autistic person off the street, like me, can pretty much instantly point out what the problems are with it. For example, I get mixed up in my head which is the box and which is the basket. I tend to get focused on questions that have nothing to do with the main question, for example, if I was to take this test I could probably get focused on some detail like, how big the box is, what colour the basket is, how long Sally and Anne have known each other, etc, and be distracted from the main question. Yet the Sally Anne Test is taken to be some kind of gold standard that proves that autistic people lack empathy, even though within thirty seconds any autistic person could have pointed out the problems with it.

Imagine how odd it would be if I declared myself an expert on what it is like to be a wheelchair user. Imagine if I declared myself an expert on Native American issues. Imagine if I declared myself an expert on Maori culture. None of these claims would be taken seriously, so why should it be different when neurotypical researchers are considered more qualified than autistic researchers.

There is actually a study on what type of morality autistic people have. Neuroclastic has an article on this:

Autistic People Care Too Much, Research Says

And here is the study:

https://www.jneurosci.org/content/41/8/1699

This study is, interesting to say the least. And by interesting I of course mean bad. The presumably neurotypical people used as a control are referred to as “healthy control subjects”. So, we’re getting off to a bad start already, autistic people being defined as “unhealthy”. So what did this study reveal about “unhealthy” autistic people. Well, basically that “They (autistic people) are characterized not only by a lack of consideration for social reputation but also, more predominantly, by an increased sensitivity to the negative consequences caused by immoral actions.”

The study concludes that autistic people are more likely to do the right thing. (Note I am not making the argument that autistic people are more moral or less moral than neurotypical people, this is just what the study says.) So this is a nice study for autistic people, isn’t it saying that we are good people? Heavens no. Autistic people are more likely to act morally because, em, we don’t understand morality I think? That’s all I could make out of this sentence. “This difference in moral cognition and behaviors in ASD individuals is specifically associated with rTPJ and consists of a reduced capability to represent information concerning moral contexts.” There are parts of this study that almost seem to descend into gibberish, because the researchers quite obviously went into the study with that assumption that autism is bad. That’s the only way I can think of that they came to the conclusion that “An increased sensitivity to the negative consequences caused by immoral actions.” is a bad thing.

Also, might I say on an unrelated note, this is probably the most boringly written study I have ever read. I’ve read a few scientific studies on a few different subjects, and yes, I get that it’s necessary often times to write them in a very dry manner, but nevertheless, it’s quite an achievement where a study that pathologizes me and many of my friends and family leaves me feeling bored rather than angry. So this study is an achievement in boringness, I at least have to give them that.

And this article , also from Neuroclastic, talks about how autism traits are described with no attempt to describe neurotypical traits:

Bias in Autism Research and The Neurotypical Advantage

That’s an idea, maybe neurotypical people need to be studied more, instead of viewing them as just “the default”. We could not just ask why autistic people (typically), make less eye contact, we could also ask why neurotypical people make more eye contact. We could in addition to asking why autistic people have a need for sameness, ask why neurotypical people have less of a need for sameness. We could ask not just why autistic people (typically), have less need for social interaction, but why neurotypical people have more need for social interaction.

To get a greater understanding of what autism is would benefit autistic people greatly, it would help us to understand ourselves. And I think answering this question will help all of us, both autistic and non autistic, to understand ourselves. However, as long as it is just neurotypical people going around in circles, taking years to answer, or never answering at all, questions autistic people could have answered in a very short time, we will never get any closer to answering the question of what autism is. So, give the task of finding out what autism is to those most qualified for the job, and stop wasting time!