What Is Autism?

Part 1: Introduction

So this is the first post in a series of posts I am writing, called “What is Autism?”. It could be four posts, ten posts, or I may contribute to this series for years to come, it’s not clear at this point. I’m hoping to do at minimum one of these posts a month, but perhaps more if hyperfocus takes over.

So the question you may be asking is, why can’t what autism is be summed up in a simple paragraph? Why does it take several blogposts to answer this question? Well the truth is, I don’t know with 100% clarity what autism is, and I don’t think anyone does. The study of the human brain is in its infancy, and it’s the case with most, possibly all, neurological differences, that we don’t fully understand what they are. Are you the kind of person who takes forever to figure out how to use a new phone? Well, the human brain is a little more complicated than a new phone. Yes, even the latest model! So if this series ever ends, I don’t expect to have a 100% answer to the question, I just hope to be a bit closer to the answer.

So, why do I want to know? There are two answers to this that I totally understand. One is, “I’m more interested in getting on with my life than in figuring out what autism is” or, “I don’t care if we ever find out what autism is as long as people treat autistic people with respect”. I totally respect these answers, however, there’s something I’ve been thinking about a lot lately. That is, what are traits that are inherent to autism, what are symptoms of things like anxiety disorders or PTSD being brought on by being treated badly, and do anxiety disorders and PTSD manifest differently in autistic people.

Take need for sameness for example. I’ve talked to other people who have anxiety disorders, but aren’t autistic. Who have a need for sameness. This raises an important question. Were autistic people born with a need for sameness, or did their life circumstances make them anxious or traumatized, and that’s why they have a need for sameness? Same goes for a sensitivity to loud noise that a lot of autistic people have. Now, my sensory issues are not even close to as debilitating as they are for many autistic people, but I’ve noticed that loud noises are more painful when I’m anxious or upset. One of my earliest memories is of being shouted at by a primary school teacher for being clumsy, so it could be that I wasn’t born with sensitivity to loud noise, but that these kind of early experiences taught me to fear loud noise.

Autism is a combination of advantages and disadvantages, just like being neurotypical is. And that will always be the case, no matter how well autistic people are treated in future societies. But, could it be the case that some of the disadvantages we associate with autism, such as need for sameness, or maybe, to an extent, sensitivity to loud noises, are caused by the way society treats us? It’s very important to figure this out, because if this is true, there’s a bit of an infinite feedback loop going on. Because society says “autism is terrible”, which is upsetting for autistic people, and causing them to display disadvantageous traits, and society is responding by saying “look how terrible autism is, autistic people need everything to be the same all the time and they are upset by the slightest sound!” which in turn upsets autistic people more and causes them to display these traits even more, which provides further “evidence” that autism is terrible, and so it goes, on and on and on.

Could it be that, in many cases, the things that are the biggest disadvantage about autism, are caused by the way we are treated? The biggest disadvantage about my autism, by a mile, is the need for sameness. It really puts strong restrictions on how I am able to live my life. Could it be that if I was treated better, I would not have the thing about my autism that I find to be the most disabling?

If strong evidence can be provided that this is the case, when people talk about how terrible autism is, we can respond, “Then stop being horrible to us!” It would force society to take a long hard look in the mirror if it turned out that the most disabling things about autism were in many cases, caused by society. Now, there is no excuse, whatsoever, for the way autism is stigmatized, regardless of what the answer to these questions I’m asking is. But it would really undercut people who wish to “cure” autism if we could say, “All of the negative features you have described were caused by people like you.”

Things I will be talking about in this series are:

Why did autism evolve? If we can get closer to answering this question, we may be able to figure out what are autistic traits and what are caused by trauma. If there is no evolutionary advantage to a need for sameness for example, maybe it was caused by the way autistic people are treated.

What is autism and what are co-occurring conditions? A lot of the “bad side” of autism, isn’t autism, but other conditions that aren’t autism. Often times autism isn’t just autism, there are other conditions also. For example I suspect that I have ADHD. It’s important to figure out what is autism and what is another condition.

What is autism, and what is just the confirmation bias of neurotypical researchers? A major problem with autism research is that it is done by NT people. It doesn’t matter if some of them have the best intentions in the world, and I believe that many of them do. Because of their own biases they end up coming up with absurd ideas like the idea that autistic people have no empathy based on the “Sally Anne Test”, a test where any autistic person could have spotted the flaws in a second. Put it this way, imagine if somebody wanted to find out about traditional Irish music. Imagine if instead of asking traditional Irish musicians about their craft, they simply came up with bizarre theories about Irish trad based on their own preconceptions. That’s pretty much where autism research is. We need more autistic researchers!

However, in trying to figure out what autism is, there needs to be a lot of caution. Maybe we will gain a more definitive answer on what autism is over the next fifty years, but we must be very careful on how we get closer to answering this question. Anything that leads to autism being detectable in the womb is very dangerous indeed.

What would autistic people brought up in a society that never stigmatized them look like? There will of course have to be a lot of speculation in this, but I would like to figure out to the best of my ability what untraumatized autistic people would be like.

So I hope you’ll all join me in this journey, part philosophy, part psychology, part evolution, but mostly me hoping I’m not entirely out of my depth with this entire project. It’s hard to give a definitive answer on when the next one will be out, due to my hyperfocus/executive function problems (there could be twenty posts on something else entirely!), but I hope the next one will be out this month or at the latest September. Hope to see you all then!