Category Archives: Functioning Labels

What is autism?

I have gradually become less certain of the answer to this question. At this point, my short version is “I have no idea!”.

The most accurate answer is “autism is the label given to people who fit certain behavioural traits”. That’s so circular that it’s pretty much meaningless, but it’s also the only answer that really means anything.

Autism was originally defined based on behaviour, by two separate researchers who described a small number of individuals fitting certain traits. Since then, it’s continued to be defined based on behaviour, although the actual criteria have changed a lot over time.

When something is defined by appearance, it’s easy to automatically assume that there’s something ‘underneath’ that sums it all up. The most pleasing and logical explanation is that autism is caused by one thing, one difference in brain structure or growth or biochemistry – and that every autistic person has that same underlying thing. The trouble is, there’s actually no evidence for that. Lots of people have tried to find it, but no-one has succeeded. There are vague bits and pieces that autistic people tend to have certain brain differences, or that most autistic people share a certain cognitive trait, or that there’s a correlation between autism and some biochemical process. But if something can’t be shown to apply to every autistic person, then it can’t be considered the underlying ‘thing’.

Of course it’s still possible that there is one underlying thing, and we just haven’t been able to find it yet. But it’s also possible that there’s not, and that there are multiple different underlying things which can result in autistic traits. That seems plausible based on the fact that no-one’s been able to find something that’s consistent across all autistic people. But it also raises the question of why and how the same set of traits can arise from various completely different causes.

So, there may not be one underlying thing. And there has never been a perfectly consistent set of behavioural traits. And yet, we still act like autism is ‘something’ and that we all know what it means! This kind of uncertainty makes me feel like I shouldn’t be writing about autism at all. How can I write about something when I don’t know what it is? But then I remind myself that no-one else knows what it is either, and they’re all still writing about it.

I think it’s pretty likely that there are subtypes of autism. Although I definitely don’t think those subtypes correspond to the functioning levels or the autism/Asperger’s distinction that is so popular. If they are defined by anything, my guess is they’re defined by the types of cognitive processes a person has, which is probably influenced by whatever is the underlying cause of their particular autism. I have spoken to autistic people who I strongly relate to, and others who feel almost as different from me as NT people are, as well as a wide range in between. And those groups do not remotely correspond to whether a person is considered high or low functioning, whether they can speak, or what diagnosis they might have.

But – at least for the moment – it’s useful to have a name for this big overall group of people who tend to have a lot of things in common. Until we have a better idea of what the subtypes are (if there are any), or until we are accommodated so well that we don’t even need a label, ‘autism’ is handy. Better to have a vaguely defined label than none at all. I don’t know what we mind find out about autism in the future (especially once researchers stop wasting all their time and money on trying to cure it, and start learning actually interesting and useful things). But for now, as a scientist, all I have to go on is the best available evidence and hypotheses.

So, I guess I’ll just carry on writing about this thing which I don’t remotely understand, which I can’t possibly define, which no-one is able to make sense of, and which is somehow still a hugely important part of my life.

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Autisticality

The word ‘autisticality’ was actually coined by my friend. Although I’m sure other people have said it before too; it’s quite a natural word to create, really. It could just as easily be “autisticness”, “autistitude”, or even – “autism”. Oh, wait.

In theory, autisticality means just the same thing as autism, right? “That kid’s autism affects their social skills”, “that kid’s autisticality affects their social skills”. And yet, it’s different somehow.

Maybe it will make more sense with some other examples. How about a broken leg:

  • My broken leg means I can’t walk.
  • My leg-broken-ness means I can’t walk.

They have the same meaning in the simplest way. But “broken leg” is very concrete and specific. Whereas “leg-broken-ness” is abstract, like it’s one-step removed from just “a broken leg”. It makes it sound like “leg-broken-ness” is some kind of all-encompassing permanent aspect of the person. That’s why the second option doesn’t make much sense – it’s actually just one small and temporary part of them. In this case, it has one specific effect: making them unable to walk.

Autism/autisticality works the same way, but in reverse:

  • My autism means I am prone to anxiety.
  • My autisticality means I am prone to anxiety.

The first one sounds like “my broken leg means I can’t walk”. It feels like saying “my specific, temporary, and abnormal medical condition gets in the way of me functioning like I usually do”. The second one feels like saying “this overall aspect of me defines the way I am as a person”.

There is a person who can walk, temporarily disguised by the broken leg. But there isn’t a non-anxious person, disguised by the autism.

There is just a person, and autisticality.

Functioning labels and non-linear spectra

In the last few weeks, I’ve talked to a lot of people about autism. Most of my family have heard about my diagnosis and everyone seems very interested. I’ve been doing a lot of explaining things to an ignorant but open-minded audience: the ideal students!

The one most common piece of misinformation I’ve encountered is the idea of a linear autistic spectrum. Things like “You’re obviously high-functioning”, or “I guess you’re fairly mild”. These are understandable things to say for people who know very little about autism. I can speak, I can do things independently, I’ve (more or less) managed to get through school, and I obviously wasn’t diagnosed as a kid. If autism was a linear spectrum, I would be placed at the ‘mild’ end. But… it’s simply not.

The main source of the problem is the fact that most people are not autistic. And so, most people who study or think about or talk about autism are not autistic. That means that most information about autism comes from the perspective of non-autistic people. That’s why lists of traits contain things like “inappropriate eye contact”. If you asked most autistic people, they’d say it’s neurotypical people’s eye contact that’s inappropriately intense and demanding!

The point of that example is just to show that autism from the inside is very different to what neurotypical people see from the outside. And that is still very true when it comes to the idea of a linear spectrum. Neurotypical people look at all autistic people and try to find ways to divide up and make sense of autism. But their interpretations are based on how autism looks from the outside.

It looks like there are some people who can speak most of the time, and some people who can almost never speak. Surely that factor is the most significant and relevant one – for a neurotypical person the ability to speak is incredibly important. But for autistic people, it’s not that simple. Speech is not the only way to communicate, and it’s often not the best way. I can speak well most of the time, but I can generally express myself far better in writing – and I know a lot of other autistic people feel the same way.

So am I really all that different from someone who can’t speak, if we both communicate better in writing anyway? Trying to put a major distinction between us does nothing for anyone involved.

The only real reason to try and divide up the autistic spectrum is to be able to support and understand everyone individually – which is perfectly reasonable. But dividing us up with a straight line from “speaks a lot” to “doesn’t speak much” is focusing way too much on something insignificant, and ignoring many other important factors.

What about the fact that I have no innate sense of direction? Or that I can’t eat foods with mixed textures? Or that I panic if I stray too far from home? Or that I can’t tell when I’m being bullied and manipulated? Or that I can’t sit still and pay attention at the same time? Or that I am unable to study in a class full of other people?

Why are all of those things considered so much less significant than the fact that I can usually use vocal words to communicate with other people pretty well? The answer is probably just the fact that vocal words are a bit more noticeable to outside observers. But just because something is more noticeable from the outside, it doesn’t mean it’s more significant on the inside.