Part 27: The Struggle

Hello, and welcome back to The Autistic Writer. I’m going to come right out and say it – this week’s blog is going to be grim. It’s not too long ago that I posted a blog that was full of memes about autism, and it showcased the wonderful self-deprecating humour many people in the autistic community have regarding their situation. But that humour is only part of the autistic experience. There is a much darker side, and I’m going to be looking at a few of the elements that make up the horrific experiences that autistic people have endured… and continue to endure. It’s not easy to write about, and it won’t be easy to read. But I hope you stick with it.


Under the circumstances, which I will discuss shortly, we can forgive Mrs Palmer’s use of person-first language.

Let me start by explaining what prompted the subject matter for this week’s blog. A few days ago, I joined in the comments on a Facebook thread, from a post on an autistic person’s page I had recently started following. The comments on this post turned into a verbal war, with angry words on both sides. The toxicity was alarming. There was very genuine pain felt by people on both sides of the argument, too. And it was started by a reference to a racial slur.

Look, let’s get this out in the open: There is a type of person in this world who manages to be simultaneously homophobic, misogynistic, racist, ableist, and who manages to blame poor people for their own poverty, too. More often than not, this type of person has pronounced right-wing political views, and is often (although not always) financially secure. And usually, this type of person is a white, western, middle-aged male. Obviously, I’m talking broad strokes here, which is somewhat ironic, because broad stroke thinking plays a part in all the vile attitudes I just listed. But here’s the thing. I am a white, western, middle-aged male. I would like to think, however, that I am an ally to any social or racial minority. I hope my behaviour shows that.

As a white, western, middle-aged man, there is a severe limit on what I can meaningfully add to any debate about racism. It is not my personal experience; I cannot hope to fully understand it, and I would not dream of trying to appropriate it. I have seen racism in action, though. I remember sitting in the stands at Hillsborough stadium, absolutely cringing as thousands of young white men chanted a racist song containing a very specific racist slur. I remember a man I used to know insisting that black footballers should not be allowed to play for England. I told him he was a fucking idiot, and his views were vile. And back in my management days, I remember a young lad working for me casually dropping a racist slur into conversation as though it didn’t matter. I formally disciplined him. Years later, he contacted me asking for a reference. I refused. Do these experiences give me some insight into the abuses endured by black and minority ethnic people? No. If you haven’t lived it, you don’t know it, is my feeling. The best I can offer is that I know racism exists, and it sickens me. I have always thought racism was vile, not to mention just plain stupid and illogical.

Back to the post on Facebook. The gist of the post this young autistic woman had written was that she was sick of the insulting language and slurs directed at autistic people. I get how she feels. There is a sense in the autistic community that certain words such as r****d are used to slur, insult and marginalise autistic people, and that it is accepted too widely, too easily. It needs to stop. And in the Facebook post, the author compared it to the way a specific racial insult is now widely abhorred. This drew a huge amount of angry responses from people who were genuinely hurt. The main issues seemed to be:

  • The author (who is white) was using black experience as a “mule” to carry issues on behalf of the autistic experience.
  • The experience of autistic people in society is not comparable to (not as awful as) that of black and minority ethnic people.
  • The author should not have written out the racist insult, even with most of the letters replaced with *****.
  • The word r****d is not as hurtful or severe, and lacks the awful connotations associated with the racist insult.

As I read and took part in the thread, I was upset and conflicted. I have huge sympathy with the views of the people who complained about the post, but I also understood where the author was coming from. One autistic person on the thread indicated that there was no real problem using the r****d word, because it also referred to “fire retardant blankets”. Elsewhere, someone commented that the word r****d was okay because it used to be an official diagnostic term, as if language could only ever be used one way. These are pretty awful responses to something that is a genuine problem.

One thing that leaped out of the thread to me was that many, many people, including many autistic people, don’t seem to understand the depths of the abuses that, historically and ongoing, have been inflicted on autistic people. The thread prompted two social media posts from me, which I reproduce below:

The abuses inflicted on autistic people is a huge subject. I can’t possibly cover it all. But I’m now going to list some of the things I have found particularly distressing to know.



Am Spiegelgrund and Hans Asperger

Under the direction of Nazi Germany, the Am Spiegelgrund clinic in Vienna presided over the torture of, experimentation on, and murder of, many disabled and unwell children. Some of these were autistic children referred by Hans Asperger (after whom Asperger’s Syndrome is named). It is unclear how many of the slaughtered children were autistic, but it is believed to be in the dozens. In all, around 800 children were horrifically murdered there. Why would Asperger, who held a clinic to supposedly help the children he categorised as being highly skilled and useful in certain areas, also send autistic children to such a horrible fate? It seems it was because some of the children that he felt were more severely affected were, as he described them in 1944, “outside the greater organism of the Nazi ideal.” These autistic children were less than human to Asperger and the Nazis. Some of the children sent to Am Spiegelgrund were gassed, others killed with drugs, others starved, others left to die exposed to the cold. To Asperger and the Nazis, they deserved no better. They were just autistic, after all.

Refrigerator Moms

In the early 1940s, independently of Hans Asperger, paediatric psychiatrist Leo Kanner was formulating his own theory of autism in children. After observing the behaviour of autistic children and their families, Kanner came up with a theory so stunningly stupid, and so harmful in its immediate and longer-term effects, that it is scarcely possible to believe it. He decided that these kids were autistic because their mothers didn’t really have any genuine maternal warmth toward them. What happened as a result of this utterly misguided and despicable theory, was that autistic children were sometimes separated from their parents as the only hope for their “recovery”. It’s difficult to imagine the heartbreak and trauma the children must have felt at this, and the same suffering of the mothers and fathers, who were duped into believing there was something wrong with them that made them bad parents. The term refrigerator moms (so called because they were supposedly so cold to their children) entered the public consciousness. The autistic kids, like all kids, needed their parents. Separating them or casting the parents as some kind of accidental villains, was never going to help anyone. We now know, of course, that autism is genetic in nature. But still, the bad parent motif has stuck. I spent thirty years working in retail, and a common sight in shops has always been frustrated parents trying to deal with children who appear to be misbehaving, but who, if you look closely, are having a meltdown. And on pretty much every occasion, there is some nearby know-it-all saying things like, “I blame the parents,” or “If they can’t control their kids, they shouldn’t have them.” This is what we are stuck with now. Many environments, not just retail stores, can trigger meltdowns in vulnerable autistic kids, but there is a public misunderstanding of what is going on. The parents get vilified as a result, as if they haven’t got enough to deal with. But it goes even further. This so-called psychogenic reading of autism is essentially a behavioural reading without resort to genuine root causes, and it led psychiatry’s approach to autism down a rabbit hole of behaviourism. If children were behaving autistically because their parents were behaving coldly, then surely the answer was to change the behaviours, right? This led directly to another abuse of autistic people: treating human beings like Pavlov’s dogs with ABA “therapy”.

Applied Behavioural Analysis (ABA)

Ole Ivar Lovaas was a Norwegian-American psychologist who decided he could cure autism. Well, not quite. His aim was to use applied behavioural analysis (ABA) to make autistic children “indistinguishable” from their non-autistic peers. Before we talk about the horror of what ABA actually was and is, let’s just examine that aim: To make autistic children indistinguishable from their peers. Encoded in that phrase is everything wrong with the behaviourist’s approach to autism “therapy”. It does not call to what the autistic child may feel, or want, or need, or even be; it is purely about making the autistic child appear to fit the “therapist’s” notion of what normal is by enforcing changes in their outward behaviour.

Many parents of autistic children have claimed ABA has been a great success. They cite improvements in the child’s behaviour, and they often say how much happier the child seems after ABA therapy. So why is it then, that many autistic people who survived ABA into adulthood have been left traumatised by the experience, many suffering severe depression and post-traumatic stress disorder as a result? Why has it been so bad that some autistic people have resorted to suicide? ABA uses a system of reward and punishment to modify behaviour. So, for example, a non-verbal autistic child might receive rewards such as praise and treats for conversing, or be punished for not conversing. Children are impressionable, and are likely to want to please parents and figures of authority, such as therapists. So the praise and rewards that come with compliance are likely to encourage compliance… but only at the expense of the child submerging and internalising their natural behaviours and desires. And of course, anyone would want to avoid punishment, as well. And what punishments did ABA include under Lovaas? Withheld treats? Early bed-time? Yes, all that, along with screaming in the child’s face, hitting them, and giving them electric shocks. Actual torture. This actually happened. Can you see now why so many autistic kids became traumatised adults?

Lovaas also tried the ABA approach on male children who seemed “effeminate”, in order to stop them turning into homosexuals. Yes, you read that right. Suppression of natural gender identity and sexual development via the same violent and abusive “therapies”.

ABA is still going strong. The days of violence and physical torture may be in the past, but the thrust of the “therapy ” is the same: to change behaviour. Parents still claim to see improvements in the behaviour and happiness of their autistic children, and “therapists” tell them everything is fine. I feel for these parents, because they love their kids, and are trying to do what they think is a good thing. But ABA still suppresses the natural behaviours, needs and desires of the autistic child, and so it remains a psychological time bomb in each of these children.


Enforced Sterilisation

In 1924, the US state of Virginia put into place a statute that gave authorisation for the compulsory sterilisation of people considered to be “unfit”. Of course, this included anyone deemed “intellectually disabled” which would have included most autistic people. The background to this was the eugenics movement, started decades earlier by British polymath and genetic elitist Francis Galton. Eugenics aims to “improve” the genetic quality of the human race by removing undesirable elements. If that sounds familiar, you’re probably correctly thinking of Nazi Germany (again), Hitler’s ambitions for an Aryan super-race of Ubermenschen, and his final solution of removing anything he considered undesirable from the gene pool, which led to the holocaust.

In 1927, the US Supreme Court ruled in favour of Virginia’s statute, finding that it did not violate the constitution. The decision has never actually been overturned.

33 US states adopted a policy of enforced sterilisation of people deemed “unfit”. The vast majority of the victims were those classed as “feeble-minded”, or r****ds. It’s difficult to say how many of these were autistic, but out of a total of more than 65,000 people affected, many were. Their crime was being neurologically different from the majority.

People were still being forcibly sterilised in the US as recently as the 1970s.

Prone Restraint

Something I’ve talked about recently on this blog, but has to be mentioned again now. Prone restraint is a method that has been repeatedly used on autistic people. It involves pinning a person face-down on the floor, immobilising them, and keeping them there until someone decides enough is enough. Sadly, all too often, “enough” comes when the autistic person is dead. Infamously, this was the case with Max Benson, a 13-year-old autistic schoolboy, who was pinned for an hour and a half until dead at his school, in 2018. Criminal proceedings are ongoing. Max’s case was not an isolated event. A BBC news report found that on average, people with learning disabilities were restrained every 15 minutes in UK hospitals in 2019. Not always prone restraint, not always on autistic people, but that huge figure speaks for itself. Prone restraint was back in controversy recently due to a horrific scene in Sia’s equally horrific movie Music, which glorified the prone restraint of an autistic person, twice. Prone restraint is fatally dangerous, terrifying for the victim, degrading and dehumanising. It has to stop.

Don’t Call the Cops

In September of 2020, a 13-year-old autistic boy from Utah, Linden Cameron, suffered a mental health crisis. Going through a meltdown, he needed help. His mother, who was clearly desperate, called 911 for police assistance. It was made clear to police that Linden wasn’t dangerous. The police arrived at the scene, and promptly shot him, leaving him in hospital in a serious condition. Linden had an anxiety attack because his mother had to go to work, and he didn’t want to be separated from her. He was running away from the police when they shot him.

Iyad Hallak was a 32-year-old autistic man living in Palestine. He had learning difficulties, and is said to have had a mental age of 8. Every day, he walked the same route to his special needs school, past the same Israeli police officers. In May last year, he was on that route, and reached into his pocket for his phone. Israeli police officers promptly shot him dead.

In 2019 in the US, another autistic man, 29-year-old Osaze Osagie was shot dead by state college police during a mental health crisis.

In 2017, police were called to a sheltered accommodation in Bristol, UK, where they tasered a 25-year-old autistic man. The police then lied that the autistic man had attacked them – a lie which was exposed thanks to CCTV footage of the incident.

Do I have to go on here? Feel free to do your own internet research on this subject.


Benefits

Many autistic people find it almost impossible to cope happily in a world made by and for neurotypical people. The severity of the difficulties varies from individual to individual. I for one have struggled in educational establishments and workplaces all my life. The effort required to fit in, to mask my difficulties, led to frequent spells of severe depression and anxiety, and eventually to autistic burnout. Many autistic people have it much worse than me, and require state benefits to be able to support themselves.

In August 2018, Christopher Fisher, a 31-year-old autistic man from Kent took his own life. He had a number of problems, and was grieving for his recently deceased grandmother. But another major trigger for him was that his benefits had been reduced. For an autistic person struggling to cope in this world, the thought of running out of money is terrifying. Sometimes too terrifying to live with.

The horribly ableist and grievously uncaring policies of the Department for Work and Pensions have resulted in their decision-makers having blood on their hands many times over.

Roy Fisher, a 27-year-old autistic man also took his own life in 2018. The DWP had been provided with plenty of information about Roy’s situation, but still called him into a fit for work meeting, which he just couldn’t face. Suicide was his way out.

Autism, being largely an invisible disability, puts people in a horrible position when they feel they cannot work, and need benefits to survive. The short story with the DWP can be summed up with, “You look well enough to work, to me. Benefits stopped.” This is the ultimate outcome of the common insult that many autistic people are all too familiar with: “You don’t look autistic.”

Generally speaking

Autistic people are more likely to be unemployed, more likely to be imprisoned, and more likely to suffer abuse and assaults than the general public. Why is this? What is institutionalised in our society to result in the harmful marginalisation of people whose neural architecture does not fit whatever is perceived as the norm?

This situation is the daily experience of far too many autistic people.

In 2017, the American Journal of Public Health published a report that showed the average life expectancy of an autistic person is just 36 years. Other reports have given different figures, some as high as 54. In either case, I’m already living on borrowed time.

Daily Distress

Autistic people suffer daily discrimination, abuse and marginalisation as a normal part of their lives. It’s not all physical assaults, although they do happen. Sometimes it’s more subtle and insidious. Shortly after my diagnosis, I became painfully aware of the phrase, “on the spectrum” being used as a casual insult by certain people in the workplace. After I came out as autistic, I stopped hearing that phrase at work. I take from that change that the people who were saying it knew it was a bad thing to say.

People’s attitudes toward me changed when I came out. Some people started talking to me as though I was stupid. Some people started minutely examining my words and actions, looking for abnormalities that reflected some odd opinion they might have about what being autistic means.

Online, the situation can be tough. The R word is used often. Autistic people are often dismissed as worthless, their opinions not relevant. One nasty person on social media said he was not going to listen to anything said by someone (me) who was mentally disabled. One particular type of interaction on social media I used to enjoy has pretty much vanished since I publicly branded myself as The Autistic Writer, as people in that community rarely interact with me any more.

In schools, workplaces and domestic situations, all kinds of bullying and abuses of autistic people persist. I was subjected to bullying, isolation and abuse as a child. At the time, no one, me included, knew I was autistic. It didn’t matter. Being a bit different was enough. I learned to escape much of those negative attitudes by a form of aggressive masking, throwing myself into being a “Jack the lad” with a lot of “front”. This eventually exhausted me, leading to my severe autistic burnout and crash. Different autistic people often resort to different “coping mechanisms” (stress reactions), some less healthy than others. Alcohol, drugs, self-harming, porn addiction, and other methods, are common.

Physical and psychological bullying is a huge problem for autistic people. Sometimes they are targeted because they are known to be autistic. Sometimes, they just have to be seen to be a little different for the abuse to start. When preparing for writing this article, I asked my autistic peers on Reddit for some figures on the abuse they have suffered. A Reddit poll isn’t the most scientific method for gathering data, I know. But I asked two genuine questions in a forum in which autistic people are very supportive of each other. I thought I knew what the outcome would be. But when I saw the results, I was shocked and moved to tears. I’m not going to quote some of the very moving comments here, because I have not been given permission by the people concerned, although there’s nothing to stop you looking at the r/autism sub on Reddit for yourself. But I can tell you about the figures my polls revealed:

As you can see, nearly 67% of respondents have been physically bullied or assaulted as a result of being autistic. Over 90% of respondents have been verbally or psychologically bullied as a result of being autistic. I want to mention here that there is a consensus among autistic people that psychological abuse is worse than physical abuse. Yes, it’s a small sample size, and not a particularly scientifically conducted survey, but it wasn’t meant to be. It was just me asking some fellow autistic people about their experience, and the result is shocking.

Although you can see from the two polls that psychological and verbal abuse seems more common, don’t be fooled into thinking that physical abuse and assault is rare. It is commonplace. Many autistic people are vulnerable to many kinds of exploitation. Many of us struggle to interpret the behaviour of neurotypical people, the nuances of tricky motivations, the lies and deceptions. Many of us will be familiar with being told we are naïve, or that we believe anything told to us. It’s not that simple, but many of us are indeed vulnerable to being misled and fooled.

In 2014, the National Autistic Society launched their Careless campaign. They found that 44% of the 1,300 autistic people questioned reported they prefer to stay indoors to avoid harassment. 49% reported that they had experienced abuse from someone they had thought of as a friend. This finding has resonated hard with me, bringing back painful childhood memories.

In 2016, an 11-year-old autistic boy from England, Jake Warfield, was bullied so badly that the resulting trauma led to him making an attempt on his own life. The bullying included being beaten up by other children who used a metal pole to assault him.

At the beginning of this article, I quoted Margaret Palmer. Mrs Palmer was speaking about the murder of her autistic grandson, Adrian Palmer. He was a vulnerable young man, and like many young autistic people, was easily influenced and manipulated. In 2006, at the age of 21, Adrian was raped by a man he thought of as a friend. The rape was reported to police, who failed to act appropriately. Just a few days later, Adrian was killed by his rapist.

I have reached my limit of talking about how autistic people have been treated, now. It’s been horrible writing this blog post. None of the issues I’ve covered are secret. It’s all out there in news reports, books, articles and the personal experiences of autistic people talking online. But one problem is that the individual issues tend to be talked about individually. You can find reports discussing police attitudes toward autistic people. You can find news reports of bullying and abuse. You can find books about ABA, about Hans Asperger, about Kanner, about enforced sterilisation. And there are more issues that I haven’t even covered affecting autistic people deeply. But we need to big picture to be brought into the public consciousness: The picture showing that autistic people are constantly in danger, constantly abused and marginalised in a bewildering number and variety of ways. Until this big picture is seen, we will continue to be the forgotten minority.

Thank you for reading. Take care of yourselves.

Why do I write this blog?
 
When I was first diagnosed as autistic, at the age of 54, I quickly learned that there was a serious shortage of information and resource for newly-diagnosed adults.  It’s my aim to inform about autism and autism-related issues as I learn.  I will never hide what I do behind a paywall.  If you like what you read and want to chip in, feel free to “buy me a coffee” by clicking the icon below.
 
You might also be interested in David Scothern’s blog, Mortgage Advisor on FIRE, which covers a range of topics including mental health issues and financial independence.

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