The Basics: What Is Autism?

Purple and blue box which reads "The Basics: What Is Autism?"

Welcome to The Basics, where I give an overview of a topic that I talk about a lot. This time, already more than a week late for the start of Autism Acceptance Month, I’m here to give an overview about autism. 

I talk about a lot of complex connections between autism and kink, autism and sex, autism and mental health, etc etc. I never want to condescend readers who are already immersed in the discourse, so I usually skip the bit where I explain what autism is and how it affects a person’s life. But there’s no shame in being unaware of exactly what autism is or what it’s like to live with – nobody is born knowing anything and a lot of conversations about it, like with most things, assume a level of knowledge that not everybody is going to have. If you don’t mind that this is a sex blog, this post will hopefully constitute a useful primer that you can send to your loved ones instead of trying to explain it all yourself.

Autism, originally named “autistic psychopathy” because psychiatric medicine was Like That, is a neurodevelopmental condition (that is, it affects the development of the brain), and some autistic people (including myself) regard it as a disability. (We sometimes refer to autism as a “neurotype” to indicate that it is not a disease or ailment but rather a valid way for a brain to be arranged. However, many autistic people express pride in their different neurotype, or neurodivergence, whilst still feeling like being autistic in a world built for allistic (non-autistic) people is disabling for them.) This of course means that autistic people are at risk of ableism perpetuated by individuals, as well as by organisations like Autism Speaks, which most autistic people hate for their emphasis on a cure, their advocacy for unethical practices including ABA, their puzzle piece imagery that suggests we’re incomplete people, and/or for the fact that only a fraction of the money they pull in is spent on helping autistic people in any tangible way (here’s a PDF from ASAN with more info). Because autism affects the brain, it expresses itself in a huge variety of ways, but some common ones can include hyper- or hyposensitivity of one or more of the senses, periods of intense hyperfocus on a singular topic or task, difficulty learning and applying social rules, and difficulty with interoception (the perception of one’s own body including hunger, thirst, etc). My favourite quote on this topic comes from Tony Attwood: “If you’ve met one person on the autism spectrum, you’ve met one person on the autism spectrum,” i.e. autistic people are just as different from one another as allistic people are from one another. 

One thing that often comes up when autistic people talk about their experiences is the fact that they only represent, well, autistic people who can talk. Some autistic people never talk in English words at all, and some (like me) can talk your ear off until they’re overwhelmed, distressed, tired, etc, at which point they lose the use of most or all of their vocabulary. Some autistic people will find use in augmented communication devices that can say particular words or phrases for them, while others use sign language, write things down, or use a combination of different methods of communication. It’s true that I don’t know what it’s like to be an entirely nonspeaking autistic person, but I do know that nonspeaking =/= non-communicative. Some autistic people struggle to read tone, facial expressions, body language etc, but that doesn’t mean that these aren’t ways for an autistic person to communicate. I typically work on the assumption that all people have something of value to say, no matter how they say it, and that it’s worth trying to perceive the atypical, nonverbal ways a person might communicate.

As a linguistics graduate I also tend to assume that language is extremely important in most areas of human existence, but I’m confident in saying that it’s especially important when discussing disability, just as it is with other marginalised identities and groups. You might see a lot of autistic people talk about a preference for identity-first language, as opposed to person-first language. Person-first language refers to “people with autism”, while identity-first language refers to “autistic people”. Many autistic people, including myself, prefer the latter, as they feel that the former (often championed more passionately by allistic people than autistic people) linguistically removes their autism from them, positioning it the way we would a diagnosis of illness rather than neurodivergence, and implying that personhood and autism are at odds with one another. That said, we have the right to decide which language we identify with, and if someone tells you that they prefer to be called a “person with autism”, you should definitely listen to them. Also, given Hans Asperger’s relationship to eugenics as well as some people’s opinion that Aspergers Syndrome is essentially autism, but in a way that’s useful to capitalism, you shouldn’t apply the labels of Aspie or Aspergers to someone else unless that’s the language they use to describe themselves.

Since autism is technically a developmental disability, I once found myself punching one of my Year 7 classmates for using the word “retard”, which I think most people know is an ableist slur. Except I wasn’t defending my own autism; it would take 6 years after my younger sibling’s diagnosis for me to get mine, at the age of 14. There were a lot of reasons for this, but one of them was my assigned-female status that encouraged me to mask a lot of my difficulties and discouraged the adults around me from labelling them as autism. It is well-known that diagnostic criteria are usually sculpted according to the presentation of a condition in your average white male, meaning that many assigned-female autistic people are diagnosed late or never, as are autistic people of colour and autistic people with one or more additional condition. Autism is not a condition which significantly warps your relationship to reality, so you will find that a lot of autistic people (especially online) are self-diagnosed using the plethora of resources that are out there, and formally-diagnosed autistic people welcome them with open arms (and if they don’t, they suck and you should unfollow them), especially given the inaccessibility of a formal diagnosis if you aren’t a cookie-cutter white guy (and sometimes even if you are). 

Autism is often diagnosed in children, in part because they have not yet learned the bundle of masking techniques that make it harder to spot autism in adults, and in part because the diagnostic criteria were originally written based on only child subjects. However, because it’s how your brain is built, it’s a lifelong condition that affects adults as much as it does children, and autistic adults are out there in your communities, hopefully living fulfilling and safe lives. I say this because people often forget autistic adults in their zeal for helping autistic kids, when in reality autism can feel more disabling in adulthood because of the added pressures of employment, housing, etc. Upsettingly, this focus on kids still doesn’t result in them receiving appropriate resources. If you can deal with ableism and child abuse then I strongly encourage you to investigate the #StopTheShock movement, as well as to research the harms of ABA, or Applied Behaviour Analysis; both these things indicate a desire to remove a child’s autism, or at least make it less visible to surrounding adults, rather than increasing their quality of life and equipping them with skills that will make life as an autistic adult easier. Resources for autistic people in general are either non-existent or wildly condescending, which is one of the reasons so many of us are being shouty on the internet, and resources are even more sparse for adults than they are for kids. There are disproportionately more “autism-friendly” screenings of children’s movies than there are of teen or grown-up movies, and autism-friendliness seems to mean little more than “you can get out of your seat and the volume isn’t as aggressive” in most of these settings. Again, autistic people are as different from one another as allistic people are, so trying to make any venue or event “autism-friendly” sounds like something of a fool’s errand to me. (I need audio to either be nonexistent or painfully loud, for example, and dimmed lights make my head hurt because visual processing is not my forte even in regular lighting. This makes so-called “autism-friendly” screenings distinctly Morgan-unfriendly, but I’m glad that some people get benefit from them and I hope we can build on the model to allow even more autistic people, kids and adults, to enjoy cinema.)

There is a lot more to be said about autism and the amazing autistic people educating others than I can fit into a single blog post, but the key points are:

  • Autism is a brain difference that manifests differently in everyone
  • It affects sensory perception, social interaction and attention/inattention, among other things
  • It is a lifelong condition which many consider a disability, especially in a world not built for us
  • Most, but not all, autistic people seem to prefer identity-first language (“autistic person”)
  • If you say “retard” in front of me, in Year 7 or now, I will hit you
  • Autistic girls, people or colour and adults are underdiagnosed, but this doesn’t actually make them any less likely to be autistic
  • I personally stand strongly in favour of self-diagnosis for autism
  • Autism-friendly cinema screenings and shopping hours annoy me an unreasonable amount due to the aforementioned differences between autistic people’s needs
  • There are many, many autistic creators and educators whose voices are valid, valuable and worth your time to check out! I can’t link all of them, but here are a few:

 

Thank you for reading, and I’ll see y’all soon!