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!

FREE RESOURCE: Autism Shapes

So I am aware that this is a sex blog, but it’s also an autism blog, and, as usual, I have a bee in my bonnet about the general public’s perception of autism and their limited understanding of what the autism spectrum actually is. Functioning labels (“high-functioning autistic” and “low-functioning autistic”) are limiting and without nuance, and are mostly defined by how much one’s autism inconveniences the people around them and/or impacts their ability to contribute to an ableist and capitalist society. They fail to take into account the fact that most autistic people don’t have the same level of difficulty unilaterally with all aspects of life, and they make me so annoyed that I want to bite people.

So I made a PDF, because confrontation scares me. You can access it by clicking here. Essentially, the PDF introduces the Autism Shape, a way to visualise the experiences of autistic people in a way that doesn’t limit them to a sliding scale which goes from “not very useful in a capitalist society” to “rather useful in a capitalist society”. The blank template looks like this:

A sort of graph thingy with eight straight lines protruding from a black dot in the middle. These lines are marked at intervals, labelled from 1 (closest to the centre) to 10. They are all labelled with different things an autistic person may struggle with. From the top, clockwise, these are: Social interaction, Sensory perception, Interoception & self-care, Flexible thinking, Adjusting to change, Paralinguistic communication, Verbal communication and Cognitive empathy. In the bottom-right corner, there is some text which reads, “Morgan Peschek, 2019. Feel free to share, but please credit me!”

The idea is to prioritise the nuanced, lived experience of autistic people over the perceptions of their “functioning” that other individuals might have. You mark your own values on the template, with 1 meaning “I struggle a lot with this” and 10 meaning “I’m fucking amazing at this”, and then you connect the dots to create a fun shape, like so:

A radar chart related to the autism spectrum, with eight "spokes" each labelled with a different aspect of autism. More information is available in the PDF.
The same graph as before, but this time with a teal eight-sided polygon drawn onto it. This is my own Autism Shape.

I’ve been developing the Autism Shape for a while now, and I’m really pleased with it, but I’m always open to suggestions! I’m particularly interested in input on how to make the PDF more accessible to people who use screenreaders, and to people with dyslexia for whom black text on a white background is difficult to read.

Who this resource is for:

  • Autistic people who want to define and express their own experience of autism
  • Professionals who work with autistic people and who know that the high/low functioning model is a pile of shit
  • Friends and families of autistic people, only for the purpose of showing it to said autistic person and saying, “Hey, this might be a helpful tool for you!”

Who this resource is not for:

  • Anybody who plans to build an Autism Shape on behalf of an autistic person. Obviously you can help them, but the whole point of revisualising the spectrum is to help autistic people define and express their own experiences.
  • At the moment, people who can’t read English, because I don’t have the means to accurately translate it or to commission a translation (let me know if you do!)
  • Anybody who practices ABA (Applied Behaviour Analysis), because if you use my cool resource as a way to harm autistic people, I might actually bite you.

I really hope that this tool helps my fellow autistics, and I encourage all my readers to share it far and wide. And on Saturday, I’ll be climbing off my high horse to deliver some smut, since this is a sex blog – stay tuned!


Liked this post? Excited by the work I’m doing? Amazed that it took me multiple hours to create the goddamn template in free graphic design software? Consider joining my Patreon to help me do more things like this!

Disability, Dignity and the Myth of Independence

Stock image of the side of a door with keys inserted in the keyhole, primarily because it was the nicest thing that came up when i searched for "access".

I am well and truly fed up with people talking to me – or at me – about disability & independence.

You hear it in school. You hear it in college. You hear it in media about or relating to disability. Even the UK government calls the benefits it awards to disabled people “Personal Independence Payments”. And honestly? It gets on my tired, disabled nerves.

It gets on my nerves because very few people are truly independent. Have you ever ordered a pizza? You depended on somebody else to cook and deliver it. Have you ever made a phone call? You depended on the engineers who made that possible and on the person who sold you your phone. Even when people go off-grid, living self-sufficiently in reclaimed shipping containers, they’re often relying on the inventors and manufacturers of solar panels. I cannot think of a single person who is actually truly independent, because humans are social animals who are hardwired to rely on, and to help, other humans.

So why do I, as a disabled young adult, have to strive for some arbitrary level of independence that is vaguely defined and contrary to human nature?

People talk about independence like it should be the end goal for many folks with disabilities. The ideal disabled person, in society’s eyes, is one who can go places alone, do their grocery shopping on their own, complete household tasks unassisted and rely on nobody. Which is especially weird when you consider the number of adult men who have no clue how to do laundry or where to find vegetables in a supermarket, having sailed from life with parents to life with a partner who, if they’re female or assigned female, will do all of those things for them. In suggesting that disabled people should aim to – or want to – reach a level of independence whereby they don’t need to live with somebody or use the services of a carer, we’re holding disabled people to a higher standard than lazy men without disabilities.

Holding disabled people to high standards isn’t new, of course; one need only glance at the coverage of any Paralympics event to realise that disabled people are expected either to be groundbreakingly good at something or to melt into the background, meek and inoffensive. Expecting disabled people to be more independent than their abled peers isn’t outside of the norm, but it is damaging and hurtful to those of us who might never be able to live alone or who might always need to phone their mum before sending an email (which I definitely do). I’ve learned not to feel bad that I’ll never be a Paralympic athlete, or Rain Man, but I still feel bad that I’m not the wholly independent disabled person that I’m allegedly supposed to be.

I propose that we shift our focus away from independence, and instead look to a more subjective, holistic measure of quality of life for disabled people: dignity.

The wonderful thing about promoting dignity, rather than independence, is that its parameters change from person to person. For example: Alex, Bobby and Carly all have a disability that makes unlacing boots difficult for them. Alex feels undignified when xir partner unlaces xir boots for them, so xe spends the extra time practicing unlacing xir boots and mastering the use of a shoehorn to make the process easier. Bobby feels undignified when he’s bent over, struggling with his laces for fourteen full minutes, so he asks his friend to give him a hand. Carly, meanwhile, finds that both of those options undermine her personal sense of dignity, so she only buys and wears boots with elastic and no laces at all.

That last sentence is important – specifically, the part about Carly’s “personal sense of dignity”. We all experience dignity differently and can find different situations more or less dignified depending on our cultural backgrounds, personal hang-ups and many other factors. Independence is a rigid, standardised goal that looks similar for everybody who strives for it, but dignity is a personal, flexible goal that is achievable for everyone.

Some people probably wouldn’t feel dignified rocking backwards and forwards in a shopping centre, humming to themselves – but that, for me, feels more dignified than staying home, and certainly more dignified than a full-scale meltdown in a public place. The beauty of it is that I get to decide what makes me feel comfortable and act accordingly, without worrying that I’m not “independent” enough, and also without any external pressure to eventually “progress” to not using my tried-and-tested coping strategies, including reliance on my support network.

I don’t want to strive for independence. I’m a human, living in society, and I want to be able to lean on other people when I need to without guilt. I’m going to strive for dignity instead, however that looks for me.


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