Part 100: One Hundred Things About Autism

Hello, and welcome back to The Autistic Writer, for this special 100th blog post! It’s been a strange ride at times, and it’s startling how much I’ve learned about autism and myself over the last couple of years or so. Alongside that learning curve, I’ve been through some pretty severe changes in my life but here I am, still keeping going. To celebrate my progress, I’m using this week’s blog post to bullet-point one hundred things I’ve learned about autism since my diagnosis, in no particular order. Where appropriate, I’ve included hyperlinks to previous blog posts that give additional detail. You ready? Let’s go!

Puzzled: The jigsaw puzzle image is a piece of iconography that keeps getting used in relation to autism, but mostly, the autistic community hate it. There are two main reasons we hate the puzzle piece: Firstly, we autistic people are not puzzles to be solved by neurotypicals. Secondly, the icon is used by the organisation Autism Speaks, and, well, we hate them also. (I’ll get to that.)
What is it? It’s incredibly hard to define autism. Every single autistic person has a different type of autism. It’s as unique to the individual as a fingerprint. But don’t be fooled; there is enough commonality for us to recognise autism in each other. Many autistic experiences are common to most if not all of us.
Spectrum: The autism spectrum has nothing to do with supposed severity of autism. The term spectrum refers to the complex multiplicity of ways autism expresses in autistic individuals.
Mild or severe? In fact, the idea that someone can be “mildly” autistic or “severely” autistic is a myth. The experience of life as an autistic person includes elements of mildness and severity for all of us, in dynamic and constantly shifting ways.
Functionality: Similarly, it is both wrong and highly offensive to talk about “high-functioning” and “low-functioning” autistic people. Portraying an autistic person as high-functioning leads to ignoring their needs. Portraying an autistic person as low-functioning leads to ignoring their agency.
Changes: As I said above, autism presents in a dynamic and shifting way. Sometimes, I pass for neurotypical. Sometimes I can barely function, so troubling is the neurotypical world. And I experience all the shades between those extremes, in an unpredictable, ever-changing manner.
Rainman: Autistic people are not always savants, as in the movie Rainman. We are not all brilliant at maths. We do not all have photographic memories. We cannot all calculate pi to 100 digits, and we cannot all tell you what day of the week the 4th of August 1821 was.
Are you ill? No. Autism is not an illness. It is a naturally occurring neurodivergence. End of discussion.
Cures: There are no cures for autism, which should be self-evident once you understand that autism is not an illness. Anyone claiming to be able to cure autism is scamming or just plain lying.
Needled: Vaccines do not cause autism. This myth started thanks to British doctor Andrew Wakefield. His fraudulent claims have since been thoroughly debunked, and he has been struck off the medical register and barred from practising medicine in the UK. Sadly, the anti-vaccine myth persists, as has been seen with the anti-vaxx movement during the covid pandemic.
You’ve got the look: The phrase, You don’t look autistic, is regularly cited by autistic people as one of the worst things that can be said to them, but is nevertheless something we hear all too often. Seriously, though, what does an autistic person look like?
Et tu, NT? Here’s another phrase guaranteed to piss off autistic people… “We’re all a bit autistic, aren’t we?” Or, “We’re all on the spectrum, somewhere, aren’t we?” No. Not everyone is on the spectrum, dammit. You can’t be a little bit autistic. You either have an autistically neurodivergent brain, or you don’t.
Apology not accepted: While we’re talking about things we don’t want to be told, let’s have another. If we tell someone that we are autistic, we don’t need, expect, or want the reply, “I’m sorry to hear that.” Why would we want anyone to be sorry about us being who we are?
Under the hood: Masking is something autistic people do to try to fit in with the neurotypical world. It’s really exhausting work, and ultimately is harmful to us.
Burnout: Eventually, trying to function in the neurotypical world, especially if you do not have a support system around you, leads autistic people to autistic burnout, which is pretty horrible.
Kirk Out: Hollywood legend William Shatner, AKA Captain Kirk of the starship Enterprise is an enemy of autistic people.
Murder: Autistic people are sometimes killed by the people supposed to be caring for them, by the use of forceful restraint.
The Voice: Words have power. The language people use when speaking or writing about autism has consequences, and care should be taken. Read more by clicking here.
Disabled: Is autism a disability, or not? The short answer is, it depends. The long answer is complex, and depends on whether you’re asking about legal classification, social reasons, or personal identification.
Breaking us in two: It is disturbingly common for autistic people to find their relationships breaking down shortly after an autism diagnosis in adulthood.
Diagnosis: Diagnosis of autism can be unreliable. It’s a tricky subject, and one we need to be aware of.
Doing it for themselves: With the previous point in mind, self-diagnosis is valid.
Lack of Awareness: Every year, there is an autism awareness week, and an autism awareness month. Both are guaranteed to piss off many autistic people, as they are usually onslaughts of neurotypical people trying to tell us autistic people what autism is all about. It’s usually accompanied by lots of jigsaw-piece imagery, or rainbow/spectrum images in garish, clashing, bright colours which are likely to trigger sensory discomfort for many autistic people.
The in-crowd: Online autistic communities tend to create groups or lists, and these are invariably seen by some as cliques. This can and does cause a lot of distress for many autistic people.
To be or not to be: Eugenics is a genuine concern for autistic people. Not only because of the association with the Nazis, but because the subject seems to indicate that some people think autistic people shouldn’t be allowed to exist, which is pretty horrible.
More changes: The diagnostic criteria for autism are subject to change at the whim of professional bodies, and this has huge consequences for autistic people who always have been and always will be autistic, regardless.
Unspeakable: If you’re trying to learn about autism, and you do some googling, then pretty soon you’re going to see links for an organisation called Autism Speaks. Do not be fooled. Autism Speaks is an enemy of autistic people.
Unacceptable: All the autism awareness in the world means nothing unless people do something positive with that awareness. Being aware, and then looking the other way instead of facing into the problems the world dumps on autistic people, is abuse by indifference.
Community: The autistic community is made up only of autistic people. The autism community includes people with an interest in autism; professionals, psychiatrists, psychologists, therapists, parents of autistic children, teachers, etc, etc. It’s wise not to get the two mixed up.
Ball and chain: All too often, autistic people are dehumanised and/or exhibited by the people closest to them. These people portray themselves as heroes or martyrs who bear up under the horrible strain of their burdensome autistic family member. It’s sickening.
Earache: Sensory difficulties are a really serious problem for many autistic people. If you don’t know you’re autistic and have sensory issues, it can be confusing and distressing. You can read about my experiences with this by clicking here.
Shlebs: Autistic celebrities are often recruited by organisations to deliver messages about autism to the media. But those messages aren’t always helpful, often sustaining harmful myths about autism.
Make Believe: Diagnostic criteria of autism are made up by non-autistic people, and are arguably completely arbitrary. This leads to some people having very strange opinions about the supposed increasing levels of autism in the population.
The Dark Lord: Probably the most famous and influential autism researcher in the world is almost universally loathed by the autistic community. And with good reason. I’m talking about Simon Baron-Cohen.
The enemy within: Sometimes, the people or organisations that claim to help autistic people are actually doing the exact opposite. A truly chilling recent example is the Spectrum 10k project.
Faking it? Sometimes, people who only find out in adulthood that they are autistic have a tough time believing it. Impostor syndrome can kick in, and it is not fun.
Nuanced thought: The notion that autistic people are unable to think in anything other than over-simplistic black-and-white terms is just one more harmful myth.
Money, money, money: There is a huge, worldwide, multi-million-dollar industry based on autism. At its centre are merchandise, and so-called treatments, therapies and cures. These all, one way or another, help perpetuate a public fear of autism, which keeps the money-makers in business. It is a scandal.
Disordered: Is autism a disorder? Well, it’s called autism spectrum disorder, so it must be, right. Well… it’s not quite that simple.
Empathy: Autistic people can and do feel all kinds of emotions, and identify with the emotional states of others. The myth that all autistic people lack empathy is just that – a myth.
No you’re not: The more you let people know you are autistic, the more No you’re not responses you’ll come across. It could be, no you’re not because you’re nothing like my autistic child, or no you’re not because you can write blog posts, or no you’re not because you’ve got a job, or no you’re not because blah, blah, blah. There are many, many variants. It’s hard to imagine any other social minority being subjected to this bullshit.
On the rise: There are not more and more people becoming autistic. What’s happening is that more and more autistic people are being identified as autistic, rather than being left to stew with misdiagnoses. Of course, misdiagnoses still happen, but as knowledge of autism increases, so autistic people are more likely to be identified. Many fools and charlatans are claiming autism is “on the rise”, and using this for all kinds of agendas, such as anti-vaxx, or chemtrail silliness, sadly.
Coming out: Deciding to be openly autistic, or even just telling friends, family or co-workers, is not an easy or simple thing to do. There are repercussions, as prejudice and ableism directed against autistic people are rife in our culture.
Boss knows best: If you are openly autistic in your workplace, it can be tricky. Some employers are better than others at accommodating neurodivergent people. If your employer is behind the curve, you could hit problems when requesting accommodations. Sometimes, you can tell your boss a little information about your needs, and suddenly they will think they are experts on your autism, and start telling you exactly what you need… usually incorrectly.
Fairness personified: Statistically, autistic people are more likely than the general population to be lesbian, gay, bisexual, pansexual, transexual, or queer. Those of us that are straight are way more likely than the general population to be supportive of the LGBTQI+ community. Autistic people are less likely than the general population to be racist, misogynistic or homophobic. We tend towards fairness and justice. Cool, eh?
He ain’t heavy: Autism is genetic. In other words, if you are autistic, it’s likely someone else in your blood family is.
Hit me one more time: Autism does not make people violent. Some autistic people are capable of violence. Many non-autistic people are violent, too. Should an autistic person dare step out of line and be violent, perhaps under provocation, you can bet everyone will blame the autism. This does not explain all the violent non-autistic criminals in the prisons, though, does it?
Stimming is fine: Stims are activities used by us autistic people to help us cope. They can calm us, or help us express emotions, or serve many other purposes. I stim when nervous, but I also stim when relaxing. It’s no one else’s business.
Right here: Sometimes, when someone finds out you’re autistic, they won’t speak to you about it… they’ll ask the person you’re with, as if you can’t communicate for yourself. They’ll talk right over you. It’s as if they think rudeness doesn’t matter if you’re autistic. It does.
Bigger: Autistic kids grow up to be autistic adults. Parents and carers should consider this before using their autistic child as a sideshow on social media. There will be a reckoning.
No leg irons: One of those phrases autistic people get sick of hearing is the old, “Don’t let your autism hold you back.” It won’t. What is likely to hold autistic people back is the constant prejudice and discrimination we face in society.
Defined: And let’s not forget, “Don’t let your autism define you.” Erm, why the hell not? The truth is autism does define autistic people. It is everything about us. Autism is a difference in the brain, and the brain is the seat of all personality and functioning. Everything an autistic person does, says, thinks, or feels is autistic.
Not with: We are autistic – we do not have autism, we are not with autism… we are autistic; it goes to our very core, and is everything about us. Autism is not an accessory we can pick up and put down.
Labelled: People will sometimes tell us autism is just a label. No, it isn’t. To suggest autism is just a label is to diminish the lived experience of every autistic person on the planet.
Gender myths: It has long been stated that autism is more common in boys than girls. This is almost certainly nonsense, and identification of autistic females and autistic non-binary people is improving. Autistic people do not live in a vacuum; we are subject to the same social pressures as everyone else (as well as the extra stuff we get subjected to). It’s thought that traditional social gender expectations have forced autistic females to behave (mask) in ways that have made autism harder to detect, for example.
Fell to Earth: Many autistic people talk about feeling alien or somehow other in neurotypical society. This is not in our minds; it is a real lived experience of knowing we are fundamentally different from almost everyone around us.
Laugh out loud: Autistic people are just as likely as anyone else to have a sense of humour. Depending on which online spaces you visit, you might find autistic people having a great time sharing jokes and puns about neurotypical people.
Sink or swim: Depending on where you are, official post-diagnosis support for people identified as autistic in adulthood can vary from sparse to non-existent. Many newly identified adults find they get the most useful support from other autistic adults online.
Unwellness: Autistic people often suffer from a selection of co-occurring conditions. Depression and anxiety are very common. Epilepsy is common. Digestive issues, joint problems, dyslexia, dyspraxia, and many many more seem to crop up regularly in autistic people.
Mortality: Statistically, autistic people tend to die younger than the general population. A major cause of death is suicide. Other leading causes of death include epilepsy and heart disease. Suicide, and arguably heart disease, are preventable. It is scandalous that lack of acceptance for autistic people is leading us to early deaths, and often suicide.
Randy: No, being autistic does not mean we can’t have sex. Some autistic people are asexual, sure, and so are some non-autistic people. Many of us are highly sexed. The problem is that it’s really inappropriate to ask autistic people if they are able to have sex, but the question gets asked regularly.
Good and hard: Most autistic people experience difficulties as a result of being autistic. Some of these stem directly from autism; for example, hypersensitivity. Some of the difficulties are indirect; imposed on us by our society or culture or environment. However, despite all the suffering we often endure, in polls the vast majority of autistic people would not accept a “cure” if such a thing was possible or even relevant.
Location Lottery: Not everyone has access to autism assessments and formal diagnosis. Your location in the world, and your culture, have an effect. Some cultures might not recognise certain signs of autism in children; for example, cultures in which children are discouraged from making eye contact with adults.
Minority report: There is a cultural hegemony that systematically abuses all social minorities. This is the basis of homophobia and racism, for example. Autistic people are a social minority, and the systematic abuse we endure is expressed mainly as neurotypical bias and discrimination against autistic people.
Walls come tumbling down: Quite often, when someone is identified as autistic in adulthood, they will experience a sense of becoming more autistic. I call this the walls coming down. When realising as an adult you are autistic, there is a sudden evaporation of the denial and resistance you previously maintained, and a sudden increase in self-awareness of autistic traits. It can be both traumatic and liberating.
Gene-ius: Yes, autism is genetic… but despite all the efforts of various science geniuses, no single autistic gene has been found. In fact, the more research that’s done, the more genes are linked to autism – currently hundreds. You cannot switch off autism with gene editing.
Headlines: Autism sells newspapers and gets clicks. The media loves an autism news story. Unfortunately, many of these stories are negative. Some outlets love it if a criminal, especially a violent criminal, is possibly autistic.
Gobby: Some autistic people speak. Some autistic people do not speak. Some of us speak sometimes and not others. Some of us have spells in which we just speak less. Some of us can swing from being hyper-verbal to non-speaking.
Focus: Many autistic people experience something called hyperfocus. It is the ability to concentrate intensely on a given subject or task to great effect, and often to the exclusion of other things.
Multi-divergence: For many autistic people, our neurodivergence doesn’t stop at autism. Often ADD/ADHD, synaesthesia, dyslexia, dyscalculia and others are part of the package.
The parent trap: Non-autistic parents of autistic children do not know what it is like to be autistic.
Conversion: The so-called therapy ABA is effectively conversion therapy. Pressuring someone to behave in a way contrary to their natural instincts will inflict mental trauma. This includes pressuring autistic children to not show autistic traits and behave like neurotypical children.
Traumatised by “care”: Many autistic adults who went through ABA as children continue to suffer the long-term effects of mental trauma, including PTSD. Some have taken their own lives.
No, you’re disabled: Imagine two identical autistic people. One claims to be disabled, the other claims to not be disabled. They are both right. You may need to do some research and challenge your preconceptions if you don’t understand this.
Doctor says no: In many places, if you want to be assessed for an autism diagnosis, you have to be referred by a GP. However, GPs are often not overly familiar with autism, and may have unhelpful preconceptions. This can mean people who need a referral don’t get one. This actually happens to people.
Not a baby: If you come out to people as autistic, be prepared to be infantilised. It’s not everyone, but some people who previously spoke to you on equal terms will now talk to you as though you are a child.
The R-word: There is a lot of online hate and abuse directed at autistic people, and the word retard is regularly deployed as an insult. It’s not only online. It can happen face-to-face, too.
Not a tantrum: Sometimes, autistic meltdowns happen. Calling a meltdown a tantrum, or even worse, treating a meltdown as a tantrum, is not helpful. Meltdowns are emotional and physical autistic reactions to overstimulation, stress, etc. Read more in the post about burnout, by clicking here.
Also not a tantrum: The same goes for autistic shutdowns, which are a different response to overstimulation, stress, etc. Again, read more in the post about burnout by clicking here.
What’s all this Sia? A pop star decides to make a movie featuring an autistic character, refuses to cast an autistic actor for the role, portrays autism in a way that infuriates autistic people, includes a scene of horrific abuse of the autistic character in a really horrible context, and calls it love, includes scenes in the movie that would overstimulate many autistic people, goes online to abuse autistic people who call her out, and then tries to get a message into media that she herself might be autistic. You couldn’t make this up.
Trending down: A common reaction encountered by people coming out as autistic is the, Oh, everyone says they’re autistic now, it’s so trendy. It’s hard to believe someone might pretend to be autistic because it’s trendy. But if they did, they’d soon get sick of the constant discrimination we face.
Context: If you find out you are autistic in adulthood, there is a good chance you are going to look back over your life and wonder how different things could have been if you had been diagnosed at age 2, or age 5, or age 10, or 16, or 18, etc, etc. This can be an upsetting process, but resisting it might not be helpful. Allowing yourself this reflection while accepting things the way they are isn’t necessarily a bad thing.
Autism hour: Some retail businesses have tried out autism accommodation by allowing an hour of quiet time, usually really early in the morning, when autistic people can do their shopping. I’ll let you make your own mind up whether you think this is okay.
Zoo: There have been several reality TV shows focusing on autistic people. It feels like we are being exhibited in a zoo. Any TV show is subject to editorial whim, and that means the show only ever reveals what suits the editorial whim and the “story” they want to tell.
Super-cure! Comic book superhero Aquaman once cured a supervillain of his autism, and then explained to the villain that being a bad guy wasn’t his fault… the autism made him do it. I kid you not. This story was read by untold numbers of comic-loving kids. This is how bad stereotypes get out there.
Alone: It is commonly observed that many autistic people prefer to be alone, or live alone. It is also true that many autistic people admit being lonely. So which is it? It could be both, and that says a great deal about the discrimination we face in life.
Can’t touch this: Some autistic people dislike physical contact, and some find it painful. Others enjoy a good hug. Some of us are generally tactile if we can instigate the contact, but dislike being touched unexpectedly. And all the other variations. Sensory and social differences in autistic people are variable and complex.
Ironic: ABA, the aim of which is to make an autistic person indistinguishable from a neurotypical person, causes trauma to autistic people. Masking, which autistic people undertake to protect themselves by trying to fit in with neurotypical society, also causes trauma and leads to burnout. Alanis would love this.
Asperger’s Syndrome: The condition Asperger’s Syndrome, which is variously cast as a type of autism or “mild” autism, is now generally not diagnosed, as the umbrella diagnosis Autism Spectrum Disorder covers it. Many autistic people who were diagnosed with AS still prefer that term, and its derivatives such as Aspie. Some autistic people, however, find these terms offensive.
Asperger’s sin: Asperger’s Syndrome (or Asperger Syndrome) was named after Hans Asperger, an Austrian clinician who carried out some early work on autism. It has been claimed that Asperger collaborated with the Nazis during the Second World War. Asperger allegedly sent some disabled children, including autistic children who didn’t fit his “little professors” profile, to the Am Spiegelgrund clinic, where 789 children were murdered. While some have disputed the claims about Asperger’s involvement, there does seem to be real evidence.
Not so chill: The term refrigerator mother, or refrigerator parent, entered the public consciousness as an alleged cause of autism. Originally coined by psychiatrist Leo Kanner, in the 1940s, the term referred to supposed emotional coldness in parenting that caused children to become autistic. This vile theory was thoroughly debunked, but not before irreparable harm was caused to autistic children and their families.
No love for Lovaas: Psychologist Ivar Lovaas (1927-2010) was a pioneering force behind applied behavioural analysis, or ABA. His approach to behaviour modification in autistic children included physical and emotional abuse. He also became involved in so-called gender-variant therapy – more physical and emotional abuse intended to stop “feminine” boys from becoming homosexual – also known as gay conversion therapy. In his time, Lovaas received widespread acclaim. It is now widely accepted his therapies were abusive and harmful, although support for some of his work still persists.
Time out: Not everyone can afford, or even find, a private autism assessment. When I was on the waiting list for an NHS assessment, someone close to me offered to pay for a private assessment. I live in a big city, and couldn’t find a private specialist anywhere near me. The ones elsewhere in the country I contacted were booked up and not accepting new cases. I waited 19 months for my NHS assessment. Some people wait years.
Infighting: The online autistic community can be incredibly supportive and kind. But disagreements happen. It’s not uncommon to see horrible disagreements on Twitter, Reddit, and other forums. Sometimes, even the most obvious points seem to trigger spiteful comments.
Red not blue: The light it up blue campaign of (alleged) support for autistic people actually comes from Autism Speaks – an organisation almost universally loathed by autistic people. For the most part, the autistic community reject light it up blue and Autism Speaks. This has led to the alternative, #RedInstead.
Vice: The National Autistic Society in the UK is commonly well regarded by autistic people. However, they are associated with Simon Baron-Cohen – he is one of the NAS’s vice-presidents. This is a cause of great concern for many autistic people in the UK.
It’s not a fun run: The Spectrum 10k project is not, as it might sound, a charity run. It is a project intended to gather DNA samples from ten thousand autistic people in the UK. This has raised the spectre of a eugenics program. Even the driving force behind the project has admitted he cannot control what future governments might do with the data. This driving force is, of course, Simon Baron-Cohen.
Moustache and glasses: Autistic masking is sometimes done deliberately. We can mentally gear ourselves up to adopt or suppress certain behaviours when we know we are heading into difficult situations or environments. But masking can also be done subconsciously, particularly when you have gone through most of your life not knowing you are autistic, and have just developed certain ways of behaving in order to cope. Both methods are exhausting, and in the long term lead to autistic burnout.
Special? Many autistic people have what are often termed special interests. These may be particularly intense hobbies, or academic interests, or whatever. Many autistic people find the term special interest offensive; others are okay with it. There are abundant stereotypes about autistic interest, and many of them are accurate for lots of autistic people. For example, an interest in trains, or Lego, or Manga. These are classed as stereotypes because they don’t apply to all autistic people.
Titanic: Autism, the culture of autistic people, the autistic community, and the lived experience of autistic people are incredibly complex. The list of points above forms only the tip of a huge iceberg. Like many autistic people diagnosed in adulthood, I have developed a keen interest – some might say a special interest – in autism; specifically the social and cultural experience of autistic people. Barely a day goes by when I don’t learn something new.

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That’s all for this week. Until next time, take care.

Darren

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Why Do I Write This Blog?

When I first found out I was autistic, I was a middle-aged adult and I knew nothing about autism. I quickly learned that there was a serious shortage of information and resources for adults in my situation. With this blog, I aim to inform about autism and autism-related issues as I learn, hopefully helping people who are on a similar journey of discovery. Like anyone who writes a blog, I want to reach as many readers as possible; if you like what I’m doing, please share it with your friends and followers. I will never hide this blog behind a paywall, but running the website does incur costs. If you would like to support, feel free to make a small contribution at BuyMeACoffee.Com.

You might also be interested in David Scothern’s blog, Mortgage Advisor on FIRE, which covers a range of topics including mental health issues and financial independence.