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.

Au-Ti, Autistic Community and Abusive Behaviour

[Image Description: the word autism surrounded by translations for “hello” in multiple languages, above a rainbow strip with text that reads “by autistic people for everyone”]

Au-Ti, known also as Autists, Autism @ Au-Ti, and on twitter as @AUTIGROUP is led by an autistic man from England called Adrie Cornelis, formerly known as Adrie Van Der Meer. The ideology behind the Au-Ti group is not progressive or supporting true neurodiversity. The group embraces the use of functioning labels and the term Aspergers, despite the numerous concerns raised by various autistic people over both the ineffectiveness of functioning labels and the links between Hans Asperger and the Nazis.

In June I resigned as an admin of this group and wrote an open letter giving my reasons. In light of further criticisms of the group from multiple sources, I wish to expand upon the contents of that letter and talk about the various experiences I had or witnessed within the group that ultimately led to my decision to publicly resign. I have wished to share this since leaving, but felt intimidated into remaining silent on many things.

While in the group, a new member joined and I was tagged as a person from Scotland they could speak to, as they were also from Scotland. This person, through repeated questions, managed to ascertain that we lived nearby to each other. They were in their 40s, I was 24 and presented at the time as a woman. He began messaging me privately less than an hour into our conversation, and asked me for a date. I blocked him.

Upon reporting this incident to Adrie and other admins, I was informed that he couldn’t be removed from the group as he hadn’t had three strikes. This was not the first incident of a man in this group private-messaging a female-presenting member with sexual or romantic comments or overtures. No previous perpetrators were removed from the group either due to this strict three-strikes policy.  

A week or two before I left, a group of three admins reported an Australian Aboriginal immigrant in the US to the police. This was, allegedly, a mental health call. The individual in question asked them NOT to call the police and explained that what he was experiencing were normal symptoms of an established long-term condition that he knew how to treat himself. Adrie, who was one of the three alongside Delia and Erin, brought Erin onto the call specifically so she, a US-based nurse, would be duty-bound to report the incident.

This was at the height of the Black Lives Matter protests in the US following a number of shootings of Black people in the US. Calling the police on a person of colour who was begging you not to, in the US, at that time, is not acceptable. Mental health crisis calls to police, particularly for autistic people, particularly for people of colour, particularly in the US, have a history of ending badly for the person who is being reported. There is a very real risk of shooting or indefinite psychiatric detention.

The group, which is based across multiple platforms including WhatsApp, Telegram and Facebook, alongside a Twitter account and, now, their own website, has allowed a practicing ABA therapist and an employee at an ABA school to remain part of the group, and to promote their work. At the time of my membership, openly opposing these viewpoints was called ‘political’ and shut down by the admins. Meanwhile, people were permitted to share pro-ABA studies on ‘early intervention’.

One admin, Delia of the police-calling incident, who is a doctor in Chile, made openly racist and Islamophobic comments in the WhatsApp group in June, calling Muslims “extremely violent” and claiming that Islam is a ‘political ideology’ and comparing it with Nazism. Adrie then ordered us, as admins, to remain ‘impartial’ when addressing racist comments in the main WhatsApp chat. He then accused those members who called out the racist comments of “bullying Delia” and demanded an apology.

After myself and numerous others left the group, a remaining member revealed to me that Adrie had told all members that we were working at the behest of a former member of the group and advised them to block all Cuban phone numbers. He previously removed this member from the group for criticising the Cuban government as it was ‘political’. After leaving, he accused myself and others of following the orders of this individual and claimed we had not independently chosen to leave. This was completely false.

He later accused those of us who left of setting up a group designed to harass members of their group and threatened to contact the police on members of a new WhatsApp group set up by former members of their group who wished to stay in contact. He implied that a formal international investigation was happening and that he was in contact with lawyers. This behaviour was clearly designed to intimidate former members into refraining from speaking publicly about their experiences. People have also been re-added to the group without their pemission.

Since leaving the group, it has rebranded from Autists to Au-Ti and has set up a news website on autism issues. On this website, Adrie has published posts featuring unfounded allegations and outright lies against Emma Dalmayne, CEO of Autistic Inclusive Meets and prominent autistic advocate. He has yet to retract or apologise for these statements. The group continues to attack other autistic people who are not part of it.

The autistic community needs to speak up about the abuse in this group and at the hands of other autistic people. Bullying within the autistic community is, unfortunately, a fairly common occurrence, and is often swept under the rug and ignored by many. Since joining this group and resigning my admin role, I have witnessed continual harm being perpetuated by this group and some of its leaders, and I can no longer stay silent.

Edit notice: this post was updated on the 23rd February to reflect a change in the Twitter username of the group following the publication of multiple articles and posts criticising the organisation.

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.

Self-Doubt, Autistic Masking & Vulnerability to Gaslighting

[Image Description: a white child with short dark hair balancing along a wooden beam surrounded by grass.]

Autistic children whose autism is identified early are taught to ‘mask’ their autism, hide it and act neurotypical. Subjecting a child to ABA is one way to do this, but there are many more less overtly torturous ways to encourage an autistic kid to hide their true self. This can be exhausting, and often fails, which is where much of the myth of functioning labels comes in – non-autistics believe that those who do not mask well are “lower functioning”. Autistic people who learn to mask early are often missed and not diagnosed.

Masking has consequences. Exhaustion, burnout, poor mental health… prolonged masking usually leads to all of these. Lack of diagnosis of autistic people who are good at masking from a young age is another. And a third is increased self-doubt; a lack of clarity about who one really is. This in itself has a third item in the chain of cause and effect: it increases the vulnerability of the person in question to gaslighting. After all, if you’re taught everything about you is wrong, such messages seep through more easily later.

In high school, I put a lot of effort into masking. I wasn’t very good at it, you can see that by the fact I managed to actually be diagnosed as a child. Yet I desperately tried, using a variety of techniques because I believed that was the only way I’d ever be accepted in society, and that was the only way I could survive. I bought teen magazines and tried to transform myself into a stereotype that didn’t fit. And when I failed, I’d construct yet another fake me from various sources.

By the time I left school, I had no idea who I really was. I could switch between four or five separate versions of me depending on where I was and who I was with, but I couldn’t tell which of these was genuine – or even if any of them were. I had to try desperately to rediscover who I was, and this led to a lot of intense soul-searching. I don’t think I ever found out who I was before I chose to mask heavily. I’m a different person now, disconnected in the middle by falsehoods.

A lack of knowledge of who one is also leads to doubting every word that comes out of one’s mouth (or, indeed, is typed). Every statement I made would be analysed, indeed over-analysed, until I no longer had faith in my own beliefs. Gaslighting, attempting to sow the seeds of doubt in someone’s mind until they can no longer trust their own judgement, only adds to this problem. I basically gaslight myself automatically as a result of years of being told my natural self is wrong and broken.

It makes it hard to engage in debate, especially online, given how often gaslighting is employed as a technique in online debates. It makes it hard to have close relationships, because I was vulnerable to it, and now I’m so scared of it that I just assume everyone may be trying to gaslight me, and I cannot believe a word anyone says. I am no longer emotionally capable of trusting anyone fully. I don’t know if I’ll ever regain the ability. Masking has led to permanent psychological scars.

This is why autism acceptance is needed, not just autism awareness. I am trying to trust myself again, and trust in what I believe and see with my own eyes. Trying to find the right balance between trusting myself and examining new evidence is hard, almost impossible. I’m still trying. Encouraging masking encourages self-doubt, and causes a vulnerability to gaslighting we have seen online. Autistic people who have gone through this chain of cause and effect may be more likely to be radicalised by dangerous groups online, especially when these groups praise them in ways those in their lives may not have done.

Masking can be dangerous, for more reasons than one. By encouraging autistic people to mask at all times, and at any cost, society is creating a population of autistic people who have poor mental health and are more likely to join extremist groups. This is a more likely explanation for some far-right shooters in the US having an autism diagnosis. Not autistic people being naturally violent, or lacking empathy. But autistic people are taught to doubt ourselves, and this can lead down a very dangerous path, when someone else decides to place their ideas where our own convictions have failed.

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.

On Harmful Autism Professionals in the Public Sphere

Image Description: photographs of Tony Attwood and Simon Baron Cohen behind gold text reading “nothing about us without us”.

There are many professionals in the field of autism whose work is actively harmful to autistic people. This includes ABA therapists and those researching a cure, but thankfully most of these people never make it into the media or the public sphere of influence. Unfortunately, a few rare autism researchers have gained fame on the backs of harmful, inaccurate theories around autism, its causes and whether it should be “cured”.

In this, I will focus on two men whose theories on autism have caused untold damage to autistic people across the globe. These are: Simon Baron-Cohen and Tony Attwood. The damage each of these men has done has been different, but they have both caused harm to my community, and are still respected figures in the field of psychology. In light of attempts by Baron-Cohen to gain support among autistic people, it is especially important that the harm he has done is addressed.

Simon Baron-Cohen

Simon Baron-Cohen is a British psychologist based at the University of Cambridge. His main field of study is autism, and throughout his career he has devised a number of theories relating to autism and published books on these. These theories include the mind-blindness theory and the empathising-systemising theory (known also as the extreme male brain theory or foetal sex steroid theory). He has published a number of books on autism, including Mindblindness: An Essay on Autism and Theory of Mind; and The Essential Difference: Men, Women and the Extreme Male Brain and this year, The Pattern Seekers: A New Theory of Human Invention.

The mind-blindness theory argues that autistic people have no theory of mind, which means that autistic people are incapable of empathy or of understanding that other people have different thoughts and beliefs to them. There are countless examples which show that this is most certainly not true of all autistic people, however due to Baron-Cohen, this has become a commonly held belief. This is hugely damaging, as it presents autistic people as unfeeling monsters and can cause people to be wary of us.

Aside from the damage the extreme male brain theory has caused to autistic people, including furthering the beliefs that cause women and girls to be underdiagnosed and diagnosed much later than male peers; this theory is also greatly harmful to all. It reinforces gendered stereotypes that men are unfeeling and logical, and that women are emotional and lack systemic thought. It is also a harmful theory to trans people, especially non-binary people who fit into neither category.

Baron-Cohen has in recent years appeared to change his views, and has begun advocating the neurodiversity paradigm in some situations. This is, on the surface, a welcome change, however digging deeper, there are signs this may not be an entirely accurate representation of his present views and research. His recent book appears to be a different take on autism from his past publications, but are they really all in the past?

He continues to promote his older books which contain damaging, debunked theories of autism, extending the harm he is doing to the autistic community for longer. You can see this on his website and in his twitter bio. His research into the extreme male brain theory has continued, and he intends to present about it on a webinar four days in the future from the time of writing. These are not the acts of someone who no longer believes old theories.

Tony Attwood

Tony Attwood is based at Griffith University in Queensland, Australia and specialises in Asperger’s Syndrome. He is best-known for a number of books on Asperger’s Syndrome including The Complete Guide to Asperger’s Syndrome which was my own father’s go-to guide for responding to my behaviour when I was a young teen. He faced backlash from the autistic and trans communities in June 2020 for calling for an inquiry into the alleged “overrepresentation” of autistic teens in gender identity clinic.

The titles of Attwood’s books do not clearly demonstrate how they cause harm, but the harm is nonetheless there. Firstly, take the use of the term Asperger’s Syndrome. This was for years a separate diagnosis to autism, though new diagnostic manuals such as the DSM-V and ICD-11 have merged the diagnoses into Autism Spectrum Disorder. Asperger’s is considered to be synonyms with high-functioning. Functioning labels are harmful to autistic people, though this goes beyond the scope here.

Attwood continues to use the term Asperger’s despite the harm of functioning labels, and despite the knowledge that Hans Asperger was a Nazi collaborator which has led to many people, even those whose diagnosis was Asperger’s Syndrome, preferring to refrain from using the name. The continued use of this term in research despite the decision not to include it as a separate diagnosis in new manuals continues to spread the belief that Asperger’s is separate from autism even though research has indicated otherwise.

Attwood has also come under criticism for being sexist as well as transphobic. In his book The Complete Guide to Asperger’s Syndrome, he states that autistic boys may feel that only female people accept them and thus this may lead to gender-identity problems. He also believes that autistic girls prefer to be friends with boys as boys are less complicated and more logical than girls. These two claims alongside his anti-trans calls for investigating the link between autism and being trans are proof of his views on gender.

Dishonourable mention: Andrew Wakefield

Andrew Wakefield was the doctor who first published the alleged link between the MMR vaccine and autism. He is not a main feature in this because he has been discredited by the mainstream, however he deserves a mention as his harm is ongoing in some circles thanks to the spreading anti-vaccination movement, which has led to a decrease in the uptake of vaccines in several countries.

His harm is twofold: one, children of anti-vax parents are now not protected from various dangerous diseases and have reduced herd immunity (in the proper meaning of the word) for those who are unable to get the vaccine for health reasons. Two, it has the implication that autism is a fate worse than dying of a deadly disease. I do not need to state why that is a harmful implication to autistic people.

Reducing their harm

Unfortunately, as long as people continue to spread damaging theories about autism, harm will be done to autistic people. Harm-reduction is therefore important, and there are a number of things that can be done here. Firstly, attempting to reduce the spread of the harmful theories: if you own a bookstore and happen to be reading this, please don’t stock the harmful books listed here. Second, continue to debunk the theories so that those who read the initial theory can find a counterargument. Third, try and change the minds of those spreading the theories.

Simon Baron-Cohen has been trying to gain support in the autistic community; make it clear to him that this support will not be forthcoming without apologies, retractions and a promise to stop spreading harmful theories further. Tony Attwood is a bit of a lost cause in my opinion, so don’t give him a platform. Andrew Wakefield is still on a mission to destroy public health, so fighting back against the anti-vaccination movement and preventing it from spreading further is the only option.

Autistic people will not be safe until there is a shift in public opinion towards autism acceptance and away from the rhetoric that we are broken and need to be cured and fixed. The autistic rights movement will continue to fight until ABA is banned, until we are no longer often locked in institutions, until people do not seek to rid the world of us. We exist, we deserve to exist, and people need to accept that.

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.