Monthly Archives: July 2015

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.

The gender talk

I haven’t explicitly talked about gender on this blog before. I haven’t exactly been avoiding the topic, it just never seemed relevant. But then as I avoided mentioning it for longer, it became a Big Deal, so I avoided it even more.

Terminology 101

Before I dive into talking about myself, I’ll start with explaining some words. I’m going to try to make this aimed at absolute beginners who have barely heard these words before.

I’ll start with possibly the most important distinction of all: sex vs. gender.

  • Sex is the physical characteristics of a person’s body. It’s defined based on a combination of traits (hormones, genitals, among others). Most of the time people can be neatly classed as either male or female – all those traits line up. But at least 1% of the population are intersex, which means they aren’t unambiguously male or female according to typical definitions.
  • Gender is a personal, internal sense of identity. Everyone experiences it differently – it is, by definition, subjective. But some of the things that may go into making up a person’s gender identity are:
    • The pronouns that feel accurate to them.
    • The words and labels that feel accurate to them.
    • A sense of belonging to a particular group.
    • The sex characteristics they feel comfortable with (whether or not those are the characteristics they currently have).
    • …among many others.

Sex is very rarely actually relevant. The only people that really need information about a person’s sex are their doctors (and even then, only sometimes!), and their sexual partners (likewise!). In any other situation, it is gender that is relevant. Gender tells you how a person should be referred to, how they should be treated, what groups and facilities they belong in, and all of that other important stuff. Gender is also way more complicated, and it’s where most people get confused – especially if they’re never thought or learned about it much before.

It all starts when you’re born, and the doctor picks you up and says “It’s a ____!”. At that point, you have officially been given your assigned-at-birth gender. That just means that someone assigned it to you when you were born. You didn’t pick it yourself (you were a baby!), someone else picked for you. Generally when people assign gender, they base it on observable sex characteristics (the doctor looks at the baby’s genitals to decide).

For the majority of people, that’s the whole story. They spend their life comfortably agreeing with the doctor’s assigned gender. Those people are called cisgender. That just means their actual gender identity is the same as the gender they were assigned at birth. Because babies (except for potentially a tiny number of exceptions) are always assigned as either ‘boys’ or ‘girls’, cisgender people are always binary. That means a gender identity that fits one of the two most common options – men and women.

For some people, they later realise that the doctor’s assigned-at-birth gender was wrong. Some people might discover that as very young kids, other people don’t notice until they are adults, or any range of ages. Those people are transgender. Their actual gender identity is different from what they were assigned at birth. When transgender people realise that their gender identity is not what they were originally told, they may do various things to help themselves feel comfortable. Things like:

  • Changing their name and the pronouns they go by.
  • Changing the groups and facilities they use.
  • Changing some of their physical sex characteristics, e.g. through surgery or hormone treatment.
  • …among many others.

Some transgender people are binary – men or women. Others are nonbinary – which just means, not simply men or women. People might identify as nonbinary if the various factors of their gender identity do not match up (for example, they might prefer to be called ‘he’, but prefer to have female sex characteristics), if they have preferences which don’t fit either option (for example, they might prefer to be called ‘they’ instead of he or she, or to have sex characteristics which aren’t considered either male or female), if their gender identity changes over time (for example, they sometimes feel like a man and sometimes like a woman). There are countless different ways to be nonbinary! And there are countless labels which describe all those different types of nonbinary. Things like: agender, androgyne, genderfluid, and many more. I couldn’t possibly describe all of the possibilities.

I’ve made a diagram to summarise how all those different words are connected with each other:

Summary

 

So what?

Hopefully my general explanations above have demonstrated why gender matters, and what it means. Some basic guidelines for being a good person when it comes to gender:

  • Listen to people’s own description of their gender (not anyone else’s) – and believe them. It doesn’t matter if you don’t understand (but try to understand).
  • Refer to people in the way they choose – their name, their pronouns, and other words like ‘man’/’woman’/etc. It doesn’t matter if it’s difficult to get used to, it’s basic courtesy.
  • Don’t ask questions you would be uncomfortable answering yourself. (Hint: don’t ask people about their genitals – that’s never OK).

I’d also like to add a disclaimer here. Everything in this post is controversial and debatable. Some people will disagree with me about my definitions or my categories, some people will be upset that I’ve missed things or think I’ve included things that aren’t necessary, some people will feel their identity can’t be described using my framework. All of that is important, and you should always, always prioritise an individual’s feelings and preferences over some general definition you have. I’ve tried to be as neutral as possible, but I’ve also been necessarily brief and I couldn’t possibly explain all of the nuances of this topic in one post. As long as you follow the ‘good person’ rules above, you should be fine. Never stop learning!

About me

I am agender. That means I don’t have a gender identity – I’m not a man, I’m not a woman, I’m not both, or in-between, or a mixture – I’m neither. Agender is a type of nonbinary identity. Nonbinary, in turn, is a type of transgender identity.

I’ve handily highlighted myself on the diagram from above:

Me

So, for readers of this blog, the relevant information about me is simple:

  • Don’t call me a man or a woman, or other types of gendered words. You can call me a person!
  • Don’t call me he or she. Use singular ‘they’, in the same way you’d use it for an unknown person. For example: “They wrote a post for their blog and edited it themself”.

I hope this has helped you learn something, and maybe cleared up some misconceptions!