Autistic Activism and Identity

A segment of a conversation I had with someone around six months ago has stuck in my head ever since. They were trying to encourage me to apply for writing jobs and referenced this blog as one of the reasons why I’d be good at that. In this process they said something along the lines of “well, you seem to consider autism the main aspect of your identity” – not in a negative way or anything, just as a statement of what they considered fact. Yet I did not agree with this at all, and I’d like to expand upon why.

I write a lot about autism on here. It’s the predominant theme of this blog, it’s something I do a lot of campaigning on and talk about frequently. Yes, I’m autistic and perfectly accepting of that fact. I think it’s important to raise awareness of the issues affecting autistic people and push for further acceptance and liberation for the autistic community alongside all neurodivergent people. It’s something important to me. But is it the main part of my identity? Not really.

In fact, I’d probably call myself an activist and campaigner first and foremost. Not just for autism issues, but climate issues, general politics and social justice campaigns. I write a lot about autism not because I view autism as my primary identity, but rather because as an autistic person AND an activist, this is a cause where I have lived experience and can contribute to improving society which is my general aim in all my activism. If I was not an activist in general, I probably wouldn’t write so much about autism (or anything).

Autism affects the way I think. It’s part of my brain, and my thoughts and feelings are what shaped me into the person I am today. It’s important, but no more or less important than other aspects of my identity, such as my political beliefs (which have also shaped me), what activities I enjoy and who I want to spend my time with. I am a person, created by my experiences, my thoughts, my emotions and all the things which have influenced those. Autism is one influence; not the sole one.

I believe in creating a world where people can thrive regardless of their neurotype. A world which accommodates sensory differences, cognitive differences and all the varying accessibility needs as much as possible. I don’t believe in creating a long-term segregated autistic community where autistic people do not engage with neurotypical people, or otherwise neurodivergent people, at all. For me, my involvement in autistic communities is around activism, to make life better for people like me.

As members of a marginalised group, autistic people can be forgiven for wanting our own spaces away from those who try to force us to conform and punish us for our differences. These are important spaces, and sorely needed in our culture. Yet they should not be the end goal; our goals should not be to create our entire identity around ‘being autistic’ and no other aspects of our personalities. It should be to create a world where we are accepted and no longer disadvantaged by our thinking style.

I don’t believe in making one influence on my development as a person my entire personality, or the one thing everyone should know about me. Reducing a complex human being to one term is never going to work out long-term, and identity only goes so far in creating a better world. We need justice for neurodivergent people, not merely awareness, or even acceptance. Publicly identifying as autistic, writing about my autism and how it affects me are good awareness and acceptance raising tools. Yet they will not alone change our society into one where autistic people can thrive.

We need to be allowed to have our identities and our terms for how we wish to describe ourselves, but in activism we need to move beyond identity towards societal change; towards changing the system. Our present system entrenches discrimination; we can push for inclusion into the system but as long as the system still exists some people will be marginalised. It may be a different group tomorrow than it was today, but it will still be someone. Neurodivergent identity is important, but neurodivergent justice is far more so.

Punishing Bluntness: Honesty and Politeness

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One of the autism stereotypes often seen on the TV and in movies is the autistic person who is completely incapable of telling a lie. This is usually shown as something along the lines of: neurotypical character asks autistic character if she looks okay, and autistic character responds by nit-picking everything wrong with her appearance until she’s upset and the audience laughs at the autistic character’s expense. She runs out of the room and the autistic character is left blinking, uncertain what he’s done wrong.

This is not a very realistic scene, especially if the character is an adult. By the time we’ve reached adulthood, most autistic people have learned that blunt honesty will lead to arguments and punishment. It is also easy to learn, especially if you’ve had a few decades to do so, that people very rarely want to be told they look bad. So, the autistic character in Generic Bad Autism Movie isn’t a realistic depiction of autism. That doesn’t mean there’s nothing to consider in that scene.

Society teaches children the phrase “honesty is the best policy”, but it doesn’t mean it. For autistic children, who tend to take things literally, being taught that phrase often leads to excessive honesty… and to the autistic child not understanding why they’re being called rude and punished for it. By the time we reach adulthood, most of us have learned that when neurotypicals say they value honesty, that is itself a lie. Neurotypical humans value honesty in certain contexts and politeness in others.

Politeness has its place in the world, after all being excessively rude will hurt others and lead to a deterioration in personal relationships. Yet at the same time, people are often expected to be excessively polite, and this can be difficult for autistic people for whom this may not come as naturally. Many, but not all, autistic people prefer to be honest and blunt where possible. Which can lead to arguments and miscommunication in a world where honesty is expected to come second to politeness.

For autistic children, it can be hard to understand the difference between honesty and rudeness in some contexts, especially when the adults around them are often giving what seem like contradictory messages. “Never tell a lie”, if you take it completely literally, means that if you’re asked if you liked your Christmas present, you may well respond “no, I hate pink and find dolls boring”. This is then seen as rude, and you’re punished. For autistic children who thought they were just being honest, this can be very upsetting.

“Always be honest” and “always be polite” are not compatible statements. The only way to make them compatible is to add in caveats. For neurotypical people, or for autistic adults who have finally learned what it really means, these caveats are included within the subtext… but for autistic children and autistic adults who have yet to work this out, the subtext isn’t visible. So, it leads to confusion, mistakes, yelling and punishment.

There are two options here for how to solve this problem. Either stop punishing ‘rudeness’ if the intention is to be honest, rather than deliberately rude; or change the phrases we teach children so that they’re no longer so fundamentally contradictory. When adults say “honesty is the best policy”, they mean it is best to be honest about big things that matter (there’s more nuance to this too, but that’s a whole other discussion) not about little white lies about whether or not you like someone’s new haircut. That needs to be explained, explicitly, to children – especially autistic ones.

Some forms of bluntness are valuable. For example, if someone brings you a first draft of a manuscript they want to send to publishing agencies, they may genuinely want you to point out any spelling errors or things that could be changed. It can be helpful as a form of constructive criticism, especially if the person seeking constructive criticism knows they’re asking someone who can be blunt. Not everyone wants total bluntness, but there are people who do, and it has its place.

For autistic adults like me, however, we can end up becoming afraid of being blunt, even when people ask for it. It took me many years to work out what people really meant when they said they valued honesty, years in which I was yelled at and punished frequently for unintended rudeness. Now, I’m simply too afraid of punishment to give honest opinions on anything, and in fact I can get anxiety attacks when pushed to share opinions on minor matters. I can speak for hours on politics, but if you ask me if I like your scarf, my heart rate will double – even if I do actually like it!

Punishing bluntness in autistic children leads to long-term consequences, because it is so rarely explained to the child why they’re being punished. Many autistic people live in fear of the phrase “you know what you did” because we often don’t. Equating intentional rudeness with excessive honesty is a quick way to make an autistic child scared to ever speak their mind. Eventually, the child will learn to hide the truth. When honesty is punished, lies become a shield.

Not all Autistic People like Computers

[Image Description: a laptop sitting in front of a desktop monitor, both displaying a webpage titled “World of Bees”]

It’s 2014. I’ve just started studying Mathematics at university. I’m interested in the statistics route; I’ve always been fascinated by politics and even though I decided to choose maths on shaky grounds of “I should study a STEM subject so I get a job”, encouraged by teachers, I want to lean towards politics as much as possible.

In my second semester, I get to take a statistics module. I’m excited. I go to lectures, I do my homework, we’re told to go to the computer lab to start work on a project. We are introduced to R. I don’t like R. It doesn’t make sense to me, I can’t get the computer to do what I want it to. In another module, we’re learning Python. I can’t make it work either. I panic, I cry as the deadline approaches and I’ve done nothing. I get poor marks on both computer projects.

It’s 2016, I go to a careers adviser. I say I’m worried about finding employment, I’m not good at interviews, I can’t work while I’m at uni because it would lead to severe burnout. I only have so much energy thanks to being autistic, I say. “Oh, you’re autistic? There are these great employment opportunities for autistic people, you don’t need to interview, just show them how good you are with computers.”

I think back. It’s 2008, I’ve just started secondary school. We’re learning photoshop in art class. I still have serious anger management issues. I can’t do it, it’s frustrating. My entire identity is built on getting good grades as I have no friends. I make another mistake. I pick up the keyboard, scream and throw it on the floor, storming out of the room. It dangles from its wire, still attached to the computer.

I go on the internet and open google. “Autism employment UK” I search. The results load. Coding, coding, coding, coding, coding. I have a headache from staring at the screen. It’s too bright, too white, too pixelated. I don’t like computers. They don’t like me. I read about Luddites and angrily think that they had the right idea. This world is not for me.

I put the laptop away and turn on the TV. “Autistic savant creates robot,” reads the headline. I can hear the presenter “… autistic people may lack social skills, but they have excellent computer skills. This young boy, aged only 9, has managed to…”

I turn off the TV. I look in the mirror and ask myself, what am I? I’m not neurotypical, I’ve never managed to survive in that society without severe masking until I’m exhausted and feel sick. But computers hate me so how can I be autistic? There’s no place for me, not anywhere. I’m an aberration, I shouldn’t exist, there is no place for me in this world.

Not all autistic people are good with computers. Not all autistic people know how to code. Not all autistic people like or want to be good with computers. We exist, we are here despite what the media and everyone else says. Stop assuming we are all computer savants. It hurts people.

Meltdowns and Shutdowns – Autistic Experiences

When autistic people are extremely distressed – either due to sensory overload, stressful social situations or something else – it can sometimes present as either a meltdown or a shutdown. These are two intense responses to distressing situations that are common among autistic people and often misunderstood by the general public. Without knowledge of how these work, well-meaning bystanders can often make things worse.

Meltdowns

An autistic meltdown is an outburst caused by overload or stress, resulting in a loss of control of the person experiencing it. This often resembles a child’s tantrum, with two major differences: a meltdown will continue regardless of whether others are present, whereas a tantrum is designed to get attention; and meltdowns can happen in adults as well as children, which can be dangerous.

Someone experiencing a meltdown may: become violent against others or themselves, yell and scream, throw things, run away from the situation without assessing potential dangers (i.e. may run into a road); or be unable to talk or communicate. This can be dangerous for autistic people of all ages, but particularly adults who may attract unwanted attention from passers-by or the authorities.

Meltdowns among children are often misconstrued as tantrums, and thus adults frequently do not bother to tackle the cause of meltdowns or understand the distress the autistic child is in. This means that potential solutions aren’t found, as the cause of distress remains such as an unsuitable sensory environment or bullying. Autistic children are often punished for meltdowns – despite these being uncontrollable.

Adult meltdowns can be even more dangerous. Police and other authorities will often view an autistic adult having a meltdown as a danger, and will react accordingly – often in ways which increase the person’s distress and escalate the situation. This can be especially dangerous in countries like the US where police regularly shoot people they view as threats. Even if nobody is hurt, meltdowns can be intensely embarrassing one the person has calmed down and recalls what happened.

Shutdowns

Shutdowns appear as the opposite of meltdowns, however are often caused by the same things. Different autistic people will experience shutdowns or meltdowns more often; some will almost always react with one while others may react either way. In a shutdown, the person becomes silent, non-communicative and will often block out the world entirely.

An autistic person who can normally speak may become non-speaking during a shutdown; or may be unable to type, point, communicate or acknowledge the presence of other people. It may present as an unwillingness to answer or look at other people, however the person often is unable to do these things, or connect with the world at all while in the process of a shutdown.

Shutdowns are the ‘freeze’ reaction, while meltdowns are fight-or-flight. An autistic person experiencing a shutdown may come across as rude, as if they’re deliberately ignoring you. Inside the person’s mind, there may be a calm after the storm, shutting out the bad things in the world that hurt them and existing in a state of bliss separate from reality. This may seem better than meltdowns, but it makes functioning in society hard – most bosses wouldn’t want employees to become non-responsive periodically.

My Experiences

When I am having a meltdown, the safest thing to do is leave me to calm down on my own. When people put pressure on me to explain myself, or try to touch me, I react by becoming increasingly distressed and unable to communicate, which increases the danger that I may become violent or run somewhere dangerous. Interfering with an autistic person mid-meltdown has a high chance of escalating the situation rather than helping.

I experience meltdowns far more often than shutdowns, but thankfully far less often than I did when I was younger. In school, when I was being constantly bullied and tormented, they were excessively frequent which presented as severe anger-management issues resulting in violence and loss of friendships. Now, they are much tamer, and less frequent, due partly to avoidance of overwhelming situations, and partly to sheer terror of the consequences.

If I feel I’m getting overloaded, and about to have a meltdown, the safest thing for me to do by far is leave the situation immediately, regardless of what it is. If that is impossible for whatever reason, I should put on noise cancelling headphones, shut my eyes and go somewhere I can be alone where nobody is able to burst in and interrupt me – such as a locked toilet cubicle.

Things other people could do to help me if they’re present when I feel overload coming is to help me leave the situation, to never encourage me to stay a little longer, and to leave me alone to work through it and calm down. It is much better to leave me alone than to stay in that situation, as I’ll find arbitrary things annoying and staying only increases the risk of a negative outcome for all present.

Sensory Sensitivities – Autistic Experiences

[Image Description: bright morning sun shining over some tram tracks that appear dark]

Sensory sensitivities are common in many autistic people. We can experience the common senses very differently to neurotypical people. Autistic people can have either hypersensitivity (where senses are over-sensitive) or hyposensitivity (where senses are under-sensitive). These differences can be present in any or all of sight, hearing, touch, taste and smell; and for the same person some senses can be oversensitive while others are under-sensitive.

Sight

Light sensitivity is the most common of the sight sensitivities. Others include a strong sense of either revulsion or appreciation for certain colours, patterns etc. It can be difficult to tell whether certain sight sensitivities are due to autism or due to other eye conditions such as short-sightedness, migraines, or Irlen’s Syndrome.

Light oversensitivity can mean the sun is always too bright, even when it’s behind a cloud, and some autistic people wear sunglasses regardless of the weather to counter this. Artificial lighting can also trigger light oversensitivity, particularly fluorescent lighting which flickers at a rate too high for most humans to notice – but some autistic people can. Flashing lights may also be a trigger, such as Christmas lights on houses during winter.

Sensory sensitivities often do not make sense to those who don’t experience them, which is a major issue in the understanding and acceptance of autistic people. Some sight sensitivities, such as being repulsed by stripy patterns, for example, seem to have no overt cause and may be dismissed as ‘silly’. However, to the individual, they can produce intense emotional reactions, or even be experienced as physical pain.

Hearing

Noise sensitivity is perhaps the most well-known of autistic sensory sensitivities. The modern image of an autistic person usually includes noise-cancelling headphones, in media that is both good representation and bad representation. Loud noises or consistent interfering noises, can cause a lot of distress for autistic people. It can become difficult to focus, and culminate in sensory overload and a meltdown or shutdown.

Some autistic people, however, seek out certain sounds that may be comforting to them. Music is naturally a common one, but the tinkling of chimes or click of buttons could also be comforting. Unfortunately, autistic people can also have a strong revulsion to some sounds, like hammering – and two autistic people may find the same sound comforting for one, and repulsive to the other, leading to conflict.

Touch

Some autistic people may hate being touched by other people, or may hate certain fabrics. Autistic people with strong touch sensitivities regarding certain fabrics may find it very difficult to buy new clothes, instead wearing the same old things over and over again until they fall apart. Other autistic people have textures they love to touch and find comforting, either to wear or just to have close by to rub when they’re feeling stressed.

Weighted blankets are popular among autistic people who crave a heavy touch, as the pressure can be enjoyable. For other autistic people, though, they may find the opposite and dislike pressure. Sensory sensitivities are an area which can vary so greatly from person to person that the only real way to accommodate most of them for an autistic person is to ask that specific individual.

Taste

Taste sensitivities can be extreme in autistic people, presenting as ‘fussy eating’ as only certain foods may be deemed acceptable. This is made worse by texture and touch also entering into it, as foods can have different textures too. An autistic person with extreme taste oversensitivity may refuse to eat anything other than a small list of foods – even if the alternative is eating nothing at all.

Other autistic people with taste under-sensitivity may crave foods with lots of flavours as they struggle to detect the taste otherwise. This means that two autistic people with opposite taste needs may never be able to share a meal. Taste-oversensitive autistic people may not be able to eat spicy food, and may find something others classify as ‘not that spicy’ actually extremely hot and painful.

These sensitivities can lead to disordered eating if they are ignored or not accommodated, leading to health impacts, so it is vitally important that they are respected.

Smell

Some autistic people can’t stand strong smells at all. Perfume and deodorants are awful and make the world painful as you can never predict where you’ll smell them. Cigarette smoke is another one that can be painful and distressing – and vaping is not much better, and can often be worse as it covers whole pavements and is inescapable. Some autistic people can’t even be in the same room as someone who has recently been smoking.

On the other hand, there are some smells that autistic people may greatly enjoy, and some autistic people who will seek out nice smells. The smell of fruit, vanilla or lavender may be very calming for one autistic person, but distressingly strong for another. Some autistic people who smoke may actually enjoy that smell, however I personally am unable to understand that at all.

My Experiences

I have light oversensitivity, I wear sunglasses unless it is night or very cloudy. I also get migraines, and don’t like bright white screens – I write these posts with a green background – or indeed staring at screens too long. I don’t want to upgrade my 1st gen Kindle as the new ones are backlit and mine isn’t. I strongly dislike Christmas, as our neighbours across the road put up flashing lights that distress me.

Noise is another one. I have noise-cancelling headphones but despite them being rather expensive they still don’t block out enough. I can’t sleep in a room with other people because their breathing disturbs me. I have a visceral hatred of construction noises due to past experiences. I can’t stand the sound of other people chewing, especially if I’m not eating myself at the same time.

Touch isn’t so bad for me, I don’t mind hugs though I prefer them if both parties are wearing long sleeves rather than skin-to-skin contact – partly because I was a germaphobe even before the pandemic. When I was younger, though, I had to put on gloves after showering because I couldn’t stand the feel of my recently-wet fingers touching my other fingers! I don’t use a weighted blanket as it doesn’t seem necessary.

I have extreme taste sensitivities and that has been really damaging in the past. If I go to events with a set menu, I usually eat nothing at all. Pot-luck dinners and other food-sharing social activities are impossible as I just can’t partake. I tried becoming vegetarian but instead of substituting things, I just stopped eating more than 3 times a week until I became sick due to malnutrition. I hate and feel awkward at food-based events and try to avoid them where possible.

Bhutan is the only country in the world where smoking is completely illegal. I know this random fact because I looked into where I could move to get away from the smell; that’s how bad my sensitivity is to it. Unfortunately, I think I would rather struggle with the language – and food! – in Bhutan. I also dislike strong perfumes and deodorants but not so viscerally, and I actually like the smell of fruit a lot.

Neurodiversity vs Aspie Supremacy: The Differences

[Image Description: a multicoloured drawing of a brain]

Neurodiversity and Aspie Supremacy are two different ideologies in the discussion of how to view autism (and, in the case of the former, other neurodivergent conditions). Their fundamental principles conflict with each other, and thus it is impossible to genuinely support both ideologies; though supporters of one may claim to support the other as a way to gain legitimacy for their views. Here, I will describe both ideologies and their differences, as a way of countering claims that they overlap.

The neurodiversity paradigm is a way of viewing conditions such as autism, ADHD, dyslexia and others as natural variations of the human brain, rather than ‘diseases’ to be cured. Neurodiversity applies not only to autism, but other conditions also, however I will focus on autism here as Aspie Supremacy is an autism-specific ideology. Supporters of neurodiversity believe all brain types are valid and deserving of rights and respect, including the neurotypical majority.

Aspie Supremacy is an ideology that claims those with Asperger’s Syndrome or ‘high-functioning autism’ are superior to those with other brain types, or in some cases are the next stage in human evolution. They tend to view neurotypical people and autistic people with higher support needs or non-speaking autistic people as ‘lesser’ or less intelligent. Aspie Supremacists tend to place emphasis on IQ as a marker of worthiness. Think Sheldon from the Big Bang Theory & his claims of being ‘more evolved’.

One of the fundamental principles of neurodiversity is that everyone is equal and deserves equal rights regardless of the structure of their brains. One of the fundamental principles of Aspie supremacy is that some people’s brains are naturally ‘better’ than others. These two statements cannot both be believed by the same person. Due to the connotations associated with the term ‘supremacy’, however, Aspie supremacists will often claim to be supporters of neurodiversity to make their views sound more palatable.

Allegations that neurodiversity advocates “hate neurotypicals” are widespread, but are not true. Jokes about the majority are not ‘hatred’ and are jokes. There is no systematic discrimination against neurotypicals, they are the privileged group when compared with neurodivergent people. Thus, jokes are not indicative of hatred, and are not meant seriously. There are, however, some (but not even all) Aspie supremacists who do look down on neurotypical people, which is likely where the allegation comes from.

The term “Asperger’s Syndrome” itself is contentions within the neurodiversity movement. The term no longer exists within the DSM-5, and will not be in the ICD-11. It is seen as an outdated diagnostic term for autism without a speech delay, and prior to the changing of the diagnostic criteria, there was evidence to show that it was dependent on the clinician if one would be diagnosed with Asperger’s or high-functioning autism. There are also the allegations that Hans Asperger, who the diagnosis was named after, was a Nazi collaborator, thus the term is extremely controversial among neurodiversity-supporting groups.

Aspie Supremacists do not support autistic people with higher support needs, non-speaking autistic people, or autistic people with co-occurring learning or intellectual disabilities. This is another criticism levelled at neurodiversity advocates, which better applies to the Aspie supremacist group. While Aspie supremacists view IQ as indicative of worth, supporters of neurodiversity are often against the notion of IQ, as it measures only a very limited definition of ‘intelligence’. Neurodiversity also includes, and advocates for the rights of, people who would not be deemed ‘high-functioning’ by society.

These are not the only two ideologies in the realm of autism politics. There are also the ‘neurorealists’, aka the ‘Autistic Dark Web’ (self-styled) who are a group of autistic individuals online who support a cure for autism; the ‘curebies’, a term for those who support a biomedical cure for autism; the behaviourists, who support ABA and other behaviourist therapies to ‘correct’ autistic behaviours. That’s not to mention the anti-vaxxers, institutionalists who want to just lock us up, and other assorted pseudoscience peddlers.

Autism politics is a confusing realm that, once stumbled into, it is hard to find your way out. There are many different factions, ideologies and beliefs – and that’s not even touching on the internal infighting that is natural in all politics. Neurodiversity and Aspie Supremacy are only two strands of this complicated picture. Yet, they are often confused with each other or conflated in a way that is damaging for supporters of neurodiversity, and so it is important to point out their differences, so we can move forward and create a neurodiverse society that values all neurotypes.

Glossary

ABA: Applied Behaviour Analysis, controversial therapy that has been likened to torture and conversion therapy
Asperger’s Syndrome: former diagnostic term for autism without a speech delay
Aspie: short for Asperger’s Syndrome, used by those diagnosed with the condition
Autistic Dark Web: internet-based group of cure-supporting autistic people
Curebie: term for supporters of a cure for autism
DSM-5: Diagnostic & Statistical Manual of Mental Disorders, Fifth Edition: a US-based collection of diagnostic criteria for mental conditions.
High-Functioning: autistic people with less support needs; functioning labels are disliked by the autistic community
ICD-11: The eleventh revision of the International Classification of Diseases, still being rolled out to replace the ICD-10.
Neurodivergent: people with minority brain types; with brain conditions
Neurodiverse: an adjective to describe a group of people with multiple brain types
Neurodiversity: a worldview that says there are many natural varying brain types
Neurotype: term for all types of brain, both neurotypical and neurodivergent.
Neurotypical: a person with the majority brain type, with no brain conditions
Neurorealist: a supporter of an ideology that claims some brain types are less desirable than others.

What is ABA, and why should it be banned?

[Image Description: a red “no” symbol over the letters ABA made out of puzzle pieces.]

CW: ABA, torture, conversion therapy.

There is a popular ‘therapy’ for autism called Applied Behaviour Analysis (ABA). It is despised by the autistic community and by all who support the neurodiversity paradigm. It was invented by a horrible man called Ivar Lovaas, and hundreds of autistic people across the globe are sadly subjected to it on a daily basis. ABA has traumatised many autistic people since its invention, yet most people do not know what it is.

Ivar Lovaas is often called the father of ABA, and lauded by Board Certified Behaviour Analysts (BCBAs) for his work in developing behaviour analysis. What BCBAs would rather you didn’t mention, however, is that Lovaas is also the father of gay conversion therapy; and that both ‘therapies’ are developed upon the exact same principles. He was involved in the “feminine boy project” in the 70s, at the same time as he was developing ABA.

ABA is designed to change the behaviour of autistic people through a system of rewards and punishments which discourage the behaviour the therapist deems undesirable and encourage behaviour they wish to see. This includes discouraging autistic people from stimming, a way we self-regulate our emotions, and encouraging extensive eye contact in order to gain rewards or escape punishment.

The behaviours deemed desirable are not those which are objectively helpful to the person being subjected to the therapy. They are the behaviours which society deems acceptable, even if they hurt the autistic person. ABA is not about helping autistic people, it is about encouraging those who are different to conform to societal expectations. In other words, it is about converting someone from behaving autistic to behaving neurotypical.

There have been studies suggesting that autistic people subjected to ABA can develop PTSD as a result of their treatment. Instead of improving the quality of life for the autistic person subjected to the therapy, instead it can traumatise them for life. There is a post on tumblr which is what finally helped me understand just how horrendous this is. Applied Behaviour Analysis is torture; to the point where I once wrote fiction involving a torture regime which used solely techniques I’d discovered in articles about ABA.

Autistic people have been speaking out against ABA for years, so the BCBAs and the ABA lobby are getting clever. They’re rebranding ABA as a number of other therapies, such as Positive Behaviour Support (PBS). But PBS (which is recommended by the NHS) and these other therapies are based on the same principles, and have the same goals. They are not about helping autistic people, but about making us more palatable to the neurotypical eye.

Applied Behaviour Analysis is autistic conversion therapy, in the simplest terms. It is a trauma-inducing, torturous so-called therapy that harms autistic people in the name of enforcing conformity. ABA is flawed in both its aims and its execution, and can’t be reformed. It must be banned, just as conversion therapy needs to be banned, to protect the autistic community and to embrace neurodiversity.

The Multiple Problems of Music by Sia

[Image Description: screenshot from the trailer of Music featuring a white woman with pigtails wearing light blue headphones sitting to the right of a black man wearing sunglasses.]

Yesterday, autistic activists took to twitter following the release of the trailer for the film Music by Sia. The trailer features a visibly disabled character complete with atypical motor movements, atypical facial expressions and large headphones. Initial criticism from the disability community came as a result of the casting of non-disabled actress Maddie Ziegler in the role of an autistic character rather than an autistic actress.

The practice of casting non-disabled actors to play disabled characters, known as “cripping up” is widespread and most mainstream productions continue to do this. Disability activists have launched campaigns against the practice but to limited success. This is one in a long line of recently accounted movies which fill feature a non-disabled actor playing a disabled character much to the disappointment of the disabled activist community.

It is important to note that despite the character of Music (yes, that’s her name) being autistic, the clips we see in the trailer of her atypical movement is closer to non-speaking cerebral palsy than non-speaking autism; evidence that the creators of this movie did not do their due diligence in actually researching disabilities and their presentations.

Cripping up is not the only thing this movie does wrong, however. Consider the advertising of the film: much of the synopses posted online refer to the character of Music as having “special needs”, including the Wikipedia page as of the time of writing this. Autistic self-advocates have long disliked the term “special needs”, as everyone has needs, and those of autistic people are only different and not ‘special’; making things accessible for autistic people does not take away from others.

Then there are Sia’s own words on the topic. In an interview available on YouTube, Sia describes the movie as “Rain Man: The Musical but with girls”. Immediately, this sets off alarm bells in the minds of autistic activists. Rain Man is a widely criticised movie by the autistic community for its stereotypical and damaging depiction of autism, and if that is the inspiration for the film, it casts a foreboding shadow on what Music’s depiction of autism is likely to look like.

Following the criticism of the trailer yesterday, Sia responded to critics by throwing fuel on the fire, making statements including:

“I’ve never referred to music as disabled. Special abilities is what I’ve always said, and casting someone at her level of functioning was cruel, not kind, so I made the executive decision that we would do our best to lovingly represent the community.”

Except autistic people are disabled, and removing us from the disability community while also claiming that someone “at her level of functioning” is unable to become an actor, is hypocritical, offensive and exclusionary. Euphemisms for disabled such as “special abilities” are loathed by the vast majority of the disabled community, and if Sia thinks this is an adequate response to criticism, she clearly hasn’t engaged much with disabled people despite claims to the contrary.

 Non-speaking does not mean unable to communicate at all, or to cope with a working environment, and there are non-speaking autistic actors who would have been able to play this part. The lack of consideration given to the casting of an autistic actor has deprived someone of a paid role in a world where it is notoriously difficult for autistic people to make a living – particularly those like who Sia is trying to “represent”.

Sia also partnered with Autism Speaks, an anti-autistic hate group masquerading as an autism charity in the US in the making of this film. Autistic activists almost all despise Autism Speaks and even a cursory internet search these days will know how polarising the organisation is – ignorance is not an excuse when the information is there and available at the click of a few buttons.

In her responses on twitter to the controversy, Sia responded to an autistic actor who was not given the chance to audition saying “maybe you’re just a bad actor”. This response, alongside multiple tweets full of aggressive sounding language is how Sia has replied to the many autistic advocates who have criticised her film. It is hard to assume good faith when someone responds so aggressively.

There was a good opportunity here to create a movie that would represent autistic people and help change stereotypes, but what we have already seen in the trailer, the casting, and in Sia’s response to criticism makes it unlikely that the end product will do so. I hope to be proven wrong, and as such will watch the movie upon its release, but I am sceptical and disappointed in Sia’s response to the valid concerns of autistic people.

EDIT: Since the initial publication of this post, new evidence has come to light that Sia did not, at any point, attempt to cast an autistic actor despite what she claimed; and that the movie was designed for Maddie Ziegler to play the lead.

Also, the same evidence suggests Maddie raised concerns that this would be viewed as offensive by the autistic community but was reassured by Sia to the contrary. Given Maddie’s age when production began on this movie; it is clear that Sia has been misleading and gaslighting Maddie also.

Edit 2: language has been changed from non-verbal to non-speaking to reflect the wishes of the non-speaking autistic community.

The days I wish I wasn’t autistic

[Image Description: some small boats on a lake under a dark cloudy sky.]

I will begin by saying that, no matter if one wants a cure or not, it would be impossible to cure autism without fundamentally altering who that person is, as it would require altering how one’s brain is structured. Most autistic people do not want a cure and the Autistic community is against searching for a cure, and there are valid fears that if such research continues it would be used to promote eugenics and lead to the abortion of autistic foetuses in the same manner as Downs Syndrome today.

That said, even a member of the Autistic community who has spoken of pride in their neurology and seeks to end cure-based rhetoric, can have days when they wish they weren’t autistic. This is one of those days for me, as was yesterday. I try not to talk about this often as I fear it will be used against the autistic community, but it would be disingenuous of me to pretend it was all sunshine and rainbows, and I’ve never wished that I was neurotypical.

There are reasons I can’t go into detail about what prompted this mood, but suffice to say I had to leave something early due to my sensory issues. As a child, I had issues particularly with touch and taste, but these have become much worse as I’ve grown older. I’m still in my mid-20s and my great fear is that if they continue to become worse, the world will become so overwhelming that I’m unable to function in it at all. I may be able to exist as an autistic person in a neurotypical world today, but there are no guarantees for tomorrow.

Sometimes I feel so weak and cowardly. There are things I can’t do that most people can, and that people just simply don’t understand why I’m unable to. At times I feel ashamed of my ‘weakness’, especially when I’m unable to do things I used to be able to do. In the past year, I’ve almost certainly been regressing slightly, I need more support, I’m more anxious and I need to sleep almost half my day just to function at a below-average level. It’s somewhat soul-crushing to realise you’re unable to do the things you want.

Then there’s my lack of employment. I really don’t want to go into this in detail because it’s an extremely touchy topic and when people bring it up, it immediately sets me on edge. This in itself is a problem because ‘what do you do’ is a common small-talk question and it means every new person I meet immediately sees the worst of me. Between that and feeling inadequate and embarrassed at the fact that I’m not earning any money, this is an issue. I know my autism makes it harder for me to find or cope with work.

I’m a big fan of fiction, and I want excitement in my life like the characters in the books I read or the shows I watch. But I am no longer able to cope with the level of excitement I seek. It’s left me in a no-win scenario where I’m either overwhelmed and in pain from pushing myself too hard, or I’m sitting in my bed watching other people live their lives and feeling horribly jealous and upset that I’m not there. So on days like this, yeah, if someone offered me a cure I might take it.

Some People Can’t Be Vegan, Get Over It

Image description: a black cow with a white face in a grassy field with two trees near the camera.

CW: eating disorders, ableism, mentions of weight, mentions of death

The ‘debate’ around whether or not there are people who cannot become vegan has existed in the background for many years and occasionally things happen that bring it to the forefront of either vegan or disability discourse. Today one of those things happened, in the form of a viral tweet stating ““I can’t go vegan for health reasons” Is complete horseshit 99.99% of the time.

Let me be very clear: there are an extensive number of health reasons that can prevent someone going vegan, and to not only outright reject them but also insult the people who have these health problems is extremely ableist. The twitter user @soy_milk_latte_ and those who responded in the thread by accusing disabled people of faking reasons or being unwilling to sacrifice their health of hating animals were today engaging in very blatant bigotry against disabled people.

I have already tweeted a thread about my own personal health reasons why I cannot go vegan, but I will summarise here: a combination of autism, ARFID and some weird still-unexplained effects on my immune system while extremely underweight mean that should I attempt to go vegan I would most likely die. Past experiences detailed in this linked thread mean that I would skip meals, feel dizzy and sick, and then either starve or die from an illness such as (but not definitely) covid-19.

There are a whole host of other health reasons why someone could not go vegan. Eating disorders are a common one – many eating disorders (including ARFID) lead to a dangerous restriction in diet and further restricting it could lead to severe health affects leading from serious weight loss to nutritional deficiency to (in the most severe cases) potential starvation. While there may be people with eating disorders who can go vegan, there are many who simply cannot.

Allergies, conditions like MCAS, IBS or food allergies can restrict someone’s diet to the point where any further reduction would lead to a lack of foods one can eat. This is not an extensive list of conditions; there are others which could prevent veganism from being healthy for someone but I’m not a medical professional so I can’t cover all bases.

In addition to conditions that mean the restriction in diet would be unhealthy, there are disabled people who are unable to cook vegan meals, prepare the food necessary to have nutritious vegan meals or plan the shopping and meal prep in a way that would make such a diet healthy. This can be because of executive dysfunction, chronic fatigue, or any condition or symptom of a condition that makes such things difficult.

Since this post is about the links between veganism and disability, I won’t bother going into any detail on other reasons why people can’t go vegan, but I’ll list a few for reference anyway: low income preventing purchase of vegan foods; cultural reasons; living in an area without sufficient supply of vegan foods; relying on others to purchase or cook foods (e.g. in the case of minors or people living in controlling situations who are unable to leave especially in the current pandemic situation).

Disabled people are people, as person-first language advocates are fond of reminding us, and deserve human rights. We have the right to live. Even taking a perspective that all living beings regardless of species or sapience have equal rights, in this case that produces a conflict as disabled people have the right to live just as animals do. Take also carnivorous animals: they must eat meat to survive. There are few vegans who would want to prevent wild animals from killing other wild animals: even if this was in any way feasible.

So, to the militant wing of the vegan movement, for I recognise this is not representative of the majority of vegans, I pose these questions: do you claim the right to decide who lives and who dies? If so, who gave you that right? Do you believe that disabled humans have less of a right to life than, say, chickens? Do you want to create a world where veganism is compulsory for humans? And, lastly, in such a world, are you going to be the one to explain to our families why we are dead?