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!

A Disabled Person Reviews: Sickness & Lies (BBC)

Screenshot of BBC's title, Sickness and Lies, but above it I added text so it now reads "A Disabled Person Reviews: Sickness & Lies"

Note: this documentary is not good, and if you’re disabled you might find it very upsetting. You might also find this review upsetting as a result, so feel free to skip it if you need to.


It has taken me a week to watch a 25-minute video.
Obviously, some of the reason for that is the cognitive fog that comes of holding an alphabet soup of mental health diagnoses, and that I’m supposed to be writing a dissertation. But most of the reason it took me a while is because, friends, this one hurt.
The disabled community is not unfamiliar with being mocked and/or dissected in mainstream media, having their diagnoses doubted and generally being treated like shit, within documentaries and outside of them. I was expecting this to be bad, so it’s not that I was disappointed. It was an extremely angry kind of hurt.
The first thing I saw about this documentary was Jessica Kellgren-Fozard’s Tweet about it, stating that she firmly declined to take part in the project because she disagreed with the premise. I’ve followed Jessica’s career for a number of years now and I respect and trust her as a content creator, meaning that I also trust that what she has said is true. So yes, I started from an angry place in watching this doc, but only because I knew that footage of Jessica Kellgren-Fozard had been used without her permission. I hoped, though, that this little sprinkle of unethical journalism would be an exception, not the rule.
The premise of this documentary, apparently, is to investigate the recent phenomenon of “Munchausen’s by Internet” (which, I would like to note, was invented by a white man). Essentially, Munchausen’s by Internet is a factitious disorder linked to and driven by online interactions with other people, and I personally (as someone with, admittedly, zero qualifications on the matter) don’t think it’s a real thing. It’s my opinion that yes, some factitious disorders are probably made worse by unregulated internet access, but the vast, vast majority of these people are legitimately disabled, enjoying community and acceptance for possibly the first time and eager to share in a space where that’s welcomed. Regardless, the documentary also looks at people trying to diagnose others with MBI or otherwise trying to prove that they are not, in fact, disabled.
Sounds like fun, right?
Infuriatingly, the documentary provides no numbers about most of these things. We’re informed that “many of the accusers are people with chronic illnesses themselves,” but there’s no clarification as to an exact number or proportion. They have no stats on how often people are malingering (which, I should note, then also makes them ill as someone suffering from a factitious disorder or similar), nor on how often disabled people are harassed about it. They don’t present any data about disabled people’s internet usage or about their wellbeing as it relates to internet usage; it’s all interviews and broad statements. One statement that was absent of numbers but caught my attention was when the online chronic illness community was described as having “spiralled” in recent years. Not “grown”, not “exploded”, but “spiralled”, because obviously the expansion of our community is a negative. They also draw attention to the fact that the number of chronically ill people is growing, especially among young women, to which I say two things: 1. Your data only shows you the growing number of diagnoses, which could be due to a huge range of factors including more comprehensive healthcare access, changes in the diagnostic criteria of certain disorders, etc., etc., and 2. Young women are one of the most thoroughly silenced groups out there. If the number of diagnosed-disabled young women is growing, could it be possible that it’s because cultural shifts have allowed them to be diagnosed? And could it also be possible that a supportive and informative online community is helping with that? Of course, they don’t dwell on any of this, because they’re too busy panicking about how many disabled Instagram users there are nowadays.
I tried to draw hope from the fact that the presenter of the program is also disabled, but a cynical voice kept asking me whether, perhaps, the BBC had chosen a disabled presenter to mitigate the obvious yuckiness of the program’s premise. She expressed that she began making the program as a result of falling down an online “rabbit hole” about chronically ill people, and the people who accuse them of faking.
Allow me to stop everything right there. I’m doing a Linguistics MA. I spend a lot of time investigating the way people frame things, what they bring to the foreground and what they do not. I noticed almost immediately that, wherever possible, the term “chronically ill” was being used instead of “disabled”. I’m not sure why, but I have two theories: the optimistic one is that this is because the BBC knew that not everyone identifies with or wants to use the label “disabled”; the cynical one is that they didn’t want to emphasise disability, because disabled people are, in the UK, a minority group protected by law (specifically, the 2010 Equality Act) and even if this documentary doesn’t constitute a hate crime, acknowledging that you’re closely dissecting the disabled community might make you sound like more of a prick than if you say “chronically ill”. (This documentary does a lot of work to avoid seeming prickish. None of it is successful.)
Then there’s the online bit. Yes, these are predominantly online communities that are being examined, both of ill people and of their doubters, but there was no discussion of disabled people forming community IRL, and, more annoyingly still, the discussion about backlash and suspicion was almost entirely focused on Reddit. A lot of people who watch this documentary might be inclined to think, “Ah, yeah, but Reddit is full of know-it-alls, argumentative bastards and people who are just generally cunts, so I don’t imagine this happens anywhere else online, and ill people can just click away from Reddit if they’re upset,” which wouldn’t be unreasonable. Unfortunately, this kind of thing happens on every platform I’ve ever used – Tumblr, YouTube, Twitter, Facebook, Instagram… they all have some lurkers who are hoping you’ll “disprove” your own disability. This behaviour is oppressive and inescapable, it is directed at members of our community within our own online community spaces, and, as even the documentary highlights, it can lead to real-life harm.
The trouble is that the documentary suggests that the harm that comes to ill people most often is self-inflicted as a result of trying to “prove” the existence of one’s disabilities; it shows interviewees recounting their experiences with coordinated harassment and doxxing, but then immediately returns to the topic of people intentionally making their symptoms worse or inventing new ones. One influencer makes reference to people who “list off every single diagnosis, or sometimes even their medications” (emphasis mine), her tone suggesting that this is a psychologically unhealthy behaviour that is driven by a need to disprove Redditors and their ableist friends. It’s my experience that when people list their conditions and/or medications, at least part of their reasoning is that someone else with that same condition, or using that same medication, can spot that someone is willing to talk about those things and can ask questions, compare experiences and receive encouragement. Again, yes, I do imagine that there are some people with actual factitious disorders who should maybe avoid that kind of content for their own sake, but I also imagine that they’re a very, very small minority.
This was another bit of framing that frustrated me. Consistently, throughout this doc, behaviours like posting symptom lists, lists of diagnoses, photos related to medical care, etc., have all been treated as though they are done solely for the purposes of proving yourself to be ill. They did mention, sort of, that the disabled community can be quite supportive and caring, but they didn’t consider for a moment that the things disabled people post are for the sake of other disabled people, rather than for the abled audience trying to expose them as liars. There was no use of the word “destigmatise” even though that seems like a pretty high priority for many disabled people, especially people with more “gross” disabilities like those related to digestion, or diagnoses which make you behave differently from your neurotypical peers. Wanting to destigmatise the specifics of disability, one’s healthcare journey, bodies that look different from what’s typical and the difficulties associated with being disabled is certainly the reason I post about mine, and it seems to me to be the main reason people share this information, for a disabled audience, an abled audience or both.
Lots of things, actually, that could look like signs of Munchausen’s By Internet to an outsider are actually very typical parts of being disabled. Someone mentioned illnesses “piling up” as though that ought to raise suspicion, when in reality, 1. Lots of conditions are comorbid with one another, so plenty of people have multiple and/or changing diagnoses and 2. Once you’re under the care of a certain healthcare team or similar and you’ve been diagnosed with one thing, it’s way more likely you’ll be tested for or could raise concerns about other things. Dr. Dickhead, who coined the term Munchausen’s By Internet, also lists “miraculous recoveries” as a sign of MBI, which frustrates me since “miraculous” can be so subjective, and sometimes bodies really do just glitch badly and then figure themselves out. Moreover, it highlights “clones” who apparently imitate disabled people so closely that “they get the same chair, the same colour service dog”, but listen. Wheelchairs are very expensive, and I personally wouldn’t want to choose one without checking out the opinions of people who already own one. Service dogs, whilst being very very good boys and girls, do not come in a huge range of colours to begin with, so statistically you’re pretty likely to see two people with a service dog of the same colour (you tit). The whole documentary feels like, regardless of its host, it has been put through a very particular lens that just cannot capture the nuances of being disabled, let alone being disabled online, because that diverts from the bit where disabled people are naughty lazy fakers. (It also feels like this should have been an hour long, partly for this reason and partly just based on the choppiness and the half-arsed interviews that answered like two questions.)
The investigation into the actual twats doxxing people for being disabled wrong was, in my view, less prominent than the discussion on faking/MBI itself, but it was also very “both-sidesy”, interviewing a moderator for one of the subs where doubters cluster together to try and find signs of faking, and finding that she considered it “a failed experiment” rather than something that could cause actual harm. Quite tellingly, she also said, “Sometimes we forgot we were dealing with human beings,” and acknowledged that “there is a line” but neglected to define where it might be. It seems like parts of the documentary are defending others’ right to scepticism, which, y’know, whatever, but that also means they’re implicitly defending behaviours that make others’ scepticism the problem of disabled people. Public internet forums debating whether or not you’re actually ill will always be hurtful, and sometimes dangerous (I convince myself I’m not disabled on a near-daily basis anyway; I don’t need any encouragement to stop taking my antipsychotics).
The thing is, this documentary does not exist in a vacuum. It exists in a world where we know that chronic conditions are underdiagnosed, especially among minority groups like women, POC, LGBT+ people etc., and it will be viewed by the people who have the power to provide or withhold these diagnoses and the treatment one could subsequently receive. It will be viewed by nosy and ableist next-door neighbours who will make you feel unsafe claiming benefits in your own home in case they glimpsed you in the garden last week. It exists in a world where the disbelieving of disabled people is already causing suffering and deaths, so maybe it’s clear why I’m angry about this documentary, which suggests that disabled people should be disbelieved.
I’m angry that they used Jessica’s image without her permission. I’m angry that they then said that “big-name influencers” like her had declined to be part of the documentary “because they’re afraid of being targets”, when Jessica states clearly on her Twitter that her motivation for declining was the ethical implications of the premise, and I suspect that was the case for many of these “big-name influencers”. Mostly, though, I’m angry that this exists. I’m angry that this was made and aired, and that whoever made those decisions either didn’t care, or didn’t care to learn, how it might affect IRL disabled people. I feel betrayed that the host was disabled but didn’t seem to bring any nuance to the table regarding disability, and was clearly there to portray “both sides”, not to advocate for other disabled people. I’m angry that it was weirdly short, so it gave only a very brief overview of campaigns of organised harassment, which are both fascinating to me as a linguist and terrifying to me as a disabled queer. I’m angry that most of the people featured in this doc were white, and that the focus was so heavily on physical disability, and a whole bunch of other things. And I’m hurt, because I feel like actual humans chose views and ratings over my actual wellbeing.
The documentary did a couple of things I didn’t hate, though! The host used they/them pronouns for a nonbinary interviewee, instead of misgendering them or carefully avoiding using any pronouns at all. She also did acknowledge that disabilities and medical interventions affect everyone differently, and what might hold true for her is not necessarily true for others. I liked some of the cool projection effects they used.
…that’s about it.
So, should you watch this wildly irresponsible and/or directly malicious documentary? Honestly, if you’re disabled, I wouldn’t recommend it – you won’t learn anything new, you’ll just be reminded how many people think you’re a liar and just how unsafe disabled people are in the world. If you’re not disabled, it might be worth watching just to know what discourse is floating around about disabled people, so that you’re positioned to be a better ally and advocate… but really, it’s not even terribly interesting, so maybe you’re better off reading reviews of it (like this one! But read multiple! I don’t represent every single disabled person!) and not giving the BBC the views. I can only really recommend it to people who, like me, sometimes want or need to get recreationally angry at the TV and who can’t find anything more infuriating on iPlayer.
I’m not here to tell you what to do, but if you want to complain about any aspect of this documentary, you can get in touch with the BBC by clicking here. If you want to support your local angry disabled person, you can buy me a coffee through Ko-Fi here. If you’d like to see some calming pictures of kittens, click here.

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!