How Can I Help Autistic People?

title of post, "How Can I Help Autistic People?"

If you’ve clicked on this blog post on purpose, congratulations! You have already taken the first and most important two steps to help autistic people: 1. Give a shit, 2. Listen to autistic people about their own experiences. You would be surprised how many people fall at the first hurdle, so I want to genuinely thank you for giving a shit – with the caveat that it’s a pretty low bar, and you shouldn’t expect to be thanked or ego-stroked for simply exhibiting decent human behaviour, especially by autistic individuals in your life who have plenty of other shit to be dealing with. Step 3 is probably, “Let go of the notion that you can learn a set of steps and instantly become the perfect ally to autistic people.”

If the question is, “How can I help autistic people as a community?” then the answer is reasonably straightforward: do as you (hopefully) would with any other marginalised community. This includes amplifying our voices instead of adding or centring your own, sharing educational resources, especially among your friends who are also not members of this community, speaking up in defense of our basic human rights and dignity even if we aren’t there to witness it, etc. I know that “straightforward” does not mean “easy”, but let that giving-a-shit fuel you to continually put in the work of educating and advocating.

If the question is, “How can I help autistic individuals in my life?” then the answer becomes a great deal more complicated. Like other humans, no two autistic people are exactly alike, and our needs and problems are as varied as we are. Our most visible problems are meltdowns (moments of responding to intense distress by way of crying, shouting, rocking etc) and shutdowns (responding to intense distress by withdrawing, becoming quieter and often unable to perform basic tasks), so we’ll start there.

My number one biggest tip here is to ask the autistic person what they need from you during a meltdown, at a time they are not distressed. Regardless of whether or not you’re actually able to extract the information you’re looking for, it will be easier for the autistic person to give you a thorough overview of what’s going on for them in a moment of relative calm (e.g. instead of asking more than once in the midst of all the supermarket noise, “What’s wrong? What do you need?” during a meltdown or shutdown, wait until you’re back in the car and the person has got their vape to ask, “Hey, I noticed you were struggling in Tesco. For future reference, what’s the most helpful thing I can do when you’re going through that?”). Mid-meltdown communication is hard, and I personally find it easier to answer closed, yes/no or this/that questions than anything less specific about what my needs are – for example, the only response you’ll get to, “What do you want to eat?” will be confused wailing, whereas I’m more able to answer “Would you like chicken or fish? Do you want ketchup?” with either words or nods/head-shakes. I also find it frustrating to be pressed when the only answer I have is “I don’t know,” and if I don’t know now I won’t know the third time you ask (even if it seems odd to you that I don’t know how cold I am, or whether I need to pee), so I can imagine that other autistic people would prefer you accept their first answer unless they volunteer another one. And if this isn’t obvious, please don’t touch a distressed autistic person (or, really, any autistic person) without their express permission, unless it is absolutely necessary to keep them safe. Sometimes I would benefit from a big, intense, squishy hug, but other times my fight-or-flight response is already on the brink of starting, and to touch me uninvited would not only intensify that, but bring with it the fear that the “fight” bit will render me a danger to you. Again, yes/no questions help so it’s totally reasonable to ask, “Is it okay if I touch you?” before you commence that soothing bear hug.

But autistic people aren’t melting/shutting down through every waking moment of their lives, so how can you be of help in a non-meltdown, day-to-day sort of way? Well, again, every autistic person is different and has different needs, so you do need to actually talk to the autists in your life to figure out what help you could offer them. However, I will say that a majority of autistic people struggle with atypical sensory perception, so asking whether your speech is an okay volume, whether the room is too warm, when it’s okay to initiate touch, etc. are all good starting points which will grant your autistic friend permission to voice their sensory needs. The same is true of communication – some autistic people might benefit from you adding line breaks into your longer messages, being able to look at your face and lipread as you speak, etc., and obviously improving your communication with one another will also help you gain a clearer picture of other ways you can be helpful.

You can also be helpful in just… regular ways that you would help anybody else. Autistic people expend a lot more energy than our allistic counterparts on things like sensory processing, masking our symptoms, interpreting social signals etc., and that leaves us with less energy for every element of day-to-day living. If you want to help a particular autistic individual through a rough time, I cannot overstate how much difference practical help can make – do your friend’s dishes! Help them make phone calls! Tidy their front room! Only do these things with the person’s permission, because autistic people are sometimes sensitive to people entering our space and touching our stuff but also because it’s the polite thing to do in this context. (I would encourage you to approach autistic people with politeness even when it seems we don’t fully understand the rules of politeness or their significance, because we can often still perceive when we’re being treated differently and because, again, we’re human people.) If you can’t do these things because of distance or Covid or your own disability, but you want to help monetarily, I’m inclined to suggest that donating to individuals’ emergency fundraisers and buying your autistic friend a takeaway is a better use of your money than pouring it into an organisaton, since a majority of autism-focused organisations do problematic shit and do not materially help autistic people in any way (google “Autism Speaks” if you’re ready to be horrified), but again, you can ask your friend what they would prefer. 

I’m sorry that the core of this post is simply, “Ask us!”, but there really isn’t any better advice – I could make a million suggestions to a single autistic person and their support system, but as soon as we’re looking at the autistic population as a whole, the variability of presentations and of humans makes it impossible to issue more specific advice. I hope this post has at least helped you know how to ask us, and reassured you that it’s okay not to know instantly how to be helpful in every situation. If you want to read more from me on autism, click here, and if not, thank you for reading and I’ll see y’all soon!

Autism At Private School

An image of a young Morgan overlaid with the title "Autism and Private School"

It surprises people to learn that I went to private school.

It might be the bright blue hair, the piercings or the sex blog, but I take comfort in knowing that people don’t get a private school vibe from me. I know plenty of kids who really enjoyed the privilege of private school, but I was certainly not one of them and I was certainly not alone in that. 

I was in a difficult position as someone who, yes, was paying fees – but who was paying those fees from a tightly-controlled trust fund that could pay fees and little else. We were never loaded, and things got worse throughout my five years there, until Year 11 (which, for non-Brits, is when 15- and 16-year-olds sit their GCSE exams, which determine which colleges they can get into and which are hyped up to the kids as being far more important than they actually seem to have been). In Year 11 we fled domestic violence and ended up in probably the coldest house in Staffordshire, and that’s what widened my eyes to the bubbled nature of private schools and other rich-people institutions, how they existed in their own reality that seemed truly ignorant to the shit that normal people experience and how I had, somehow, found myself on the outside of the bubble.

I’d felt Other for as long as I could remember, but (thanks in no small part to my mum’s excellent parenting) I started out proud of my oddness, considering “weird” to be a badge of honour. I didn’t mind being the weird kid at all until private school, at which point it became clear that I wasn’t supposed to be there, being weird. When people ask me whether I was bullied in high school, my honest answer is, “I don’t know.”

Private school kids, in my experience at least, don’t hit you, and they rarely yell slurs at you. Instead, they create an atmosphere of hostility that you can either co-create with them, or fall victim to. It’s insidious, all whispers and giggles and social media posts and questions with no correct answer (like when I came out as bi and was grilled for what felt like hours about which of the popular girls I fancied the most), and it’s impossible to point to singular instances of them making you feel like shit because it’s pervasive, built into the culture of private school much like other bits of ableism are. 

Oh, which reminds me: my private school was not well-equipped for disabled students at all, which I hear is not uncommon of private schools. The buildings were big and old with brutal staircases and very limited elevator access, sprawled across a campus that was big enough to require a ten-minute gap between lessons. When I was diagnosed with autism, the school – already dismayed at my self-harm and chaotic energy – was at a loss, and the only autism-specific resource I remember receiving was a set of laminated flashcards from the Autism Outreach Team (which were of no use to me as flashcards but which I stimmed with until they fell apart). The rule was that you couldn’t eat outside of the canteen, but I won permission to go, with one friend, outside of either canteen (yes, we had two. No, we didn’t need two) to eat somewhere quieter and with fewer bodies to bump into. Unfortunately, I had to explain that I’d been given this permission to almost every staff member I encountered, since apparently word had not got out that there would be a weirdo permitted to eat their Nutella sandwiches in the wild, and I hid in my form room whenever I could, no matter the nice weather or the presence of rambunctious boys, who kind of defeated the point of quiet lunchtime. I also ended up exempt from PE, and allowed to drop Latin, which meant that there were several hours a week I had to be accounted for. Now, in my school’s defence, they started out by putting me in the library to do some schoolwork during these hours, which seems pretty reasonable. What did seem unreasonable was their objection to my writing fanfic on the library computers (not even smut – I didn’t and don’t understand why they saw no benefit in my writing things that were not strictly school-related, but I’m not a teacher). The librarian snitched on me, and I like to phrase this next part as dramatically as possible: I was shut in a cupboard for my library crimes.

Phrased less dramatically, they decided to put me somewhere with no computer access. When they said “Learning Resource Centre” I perked up, thinking perhaps there were actually some resources in this godforsaken school. Instead, I was led to a cupboard in the Maths building, coated in cheerful blue paint but still, a cupboard. If it wasn’t a cupboard originally, it was being used as one, with a desk and a chair dwarfed by shelves and shelves of stationery.

They put me in the stationery cupboard for getting distracted from my schoolwork.

(Hilariously, this was when I wrote some of my better fanfic, because I handwrote it in the cupboard and then actually proofread it as I was typing it up. Also, I listened to a *lot* of MCR and Fall Out Boy, because nobody was checking on me to see that I’d slipped an earbud in. I’d go so far as to say that some of my favourite hours were those quiet ones in the fucking cupboard, away from the constant hum of kids talking and the paranoia it could induce. I wrote and watched clouds out of the window and probably recharged my sanity a great deal before having to go back to the chaos that was home.)

There are plenty of other moments I look back on and am filled with emotions on the resentful-to-horrified spectrum. One that still lives as a thorn in my sided is that I was told explicitly that I couldn’t put in an Extenuating Circumstances claim for my DT coursework, because fleeing domestic violence isn’t acute in the way a bereavement is. This was false, and my claim probably would have been accepted, raising my grade (I got a C overall, having scored an A on the exam but been dragged down by my D-grade electronics project). I don’t know whether I was lied to or simply a victim of the ignorance that comes of only letting a handful of the most socially-acceptable disabled kids into your school. 

(There was also the blackmail incident, but I’m so tempted to put that story on YouTube that I’m not going to detail it here, except to say that I don’t think any laws were broken.)

I truly don’t believe there was any explicitly-discussed, agreed-upon agenda to treat disabled kids like shit. I don’t think they cared enough about us for that, to be honest. They simply refused to engage with the notion that some of their perfect, posh little students could be disabled, and as a result they had no resources at the ready for kids like me, no policies or alternatives or anything, just a cupboard. I felt distant from my neurotypical peers and forgotten by my school, and other private school kids I’ve talked to can relate, whether they’re autistic, otherwise learning-disabled, or any other kind of disabled. 

I would like to end this blog post with the sentiment that private schools should do better, but my experience there shaped my angry leftist belief that actually, private schools shouldn’t exist. I didn’t manage to get a better education through money, but I did access the privilege of having a more prestigious education that looked better on applications. Schools have the power, I believe, to really level out the playing field for all kinds of kids and to unify them under the banners of equitable education and community. I don’t think private schools are going to do anything more than further distance kids from each other, imbuing the sense that they’re either distinctly superior or distinctly inferior to other kids. Education should be at such a high standard across the country that the only additional benefits money can get you are a comfier seat, but we’ve got quite a while to go.

If you’re a current or ex-private school kid, my sympathies to you. Please follow Baby Morgan’s example and be subversive at every opportunity, run for student council and be as loud as you safely can about the beautiful ways in which you’re different. (Also, if you’re a current private school kid, please click away from this blog, because I assume you’re not yet 18/21/the age of consent in your location. You’ll have plenty of time to look at weird sex blogs when you’re older, but right now please try and enjoy being a kid. Kids should get to enjoy being themselves.)

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!