Hello, and welcome back to The Autistic Writer. I’m not going to lie, I’ve had a difficult week. I’ve felt unwell, partly due to my ongoing back problem, and partly due to other stuff that’s just left me feeling rubbish. People close to me are struggling with various problems in life, and in some ways I find that more difficult to deal with than how I feel. Despite feeling so awful, my job has proved to be something of a release this week. It’s nice when you have a job in which you can help people, and experience their sincere gratitude. I’d spent a good few days on the phone with someone, trying to sort out a problem for them, which I eventually did. To meet that person face-to-face, and see how much it meant to them was very uplifting.
Also this week, I had to have a long conversation with someone; a conversation relating to autism and my job. That person, let’s call him Bob, clearly came into this with some unconscious preconceptions about autism, and about me. Bob’s role in the conversation was ostensibly to be supportive and make recommendations. However, I found myself being told by Bob what it was I needed, without him even listening to me. His advice was so misguided, so far from what was required, that I was baffled. Even when I explained in great detail how I understand my autism, and what it means for my life, Bob seemed to barely hear it and just dismiss it. I got tired of the conversation, and simply let him say and recommend what he wanted, and gave him a polite goodbye. The conversation was surreal. I realised after a while that it was an example of bias, probably unconscious bias, in Bob. It reminded me of when women talk about how men mansplain to them, or when you hear white people telling people of colour what racism is. I’m living this autistic experience. I’m on a huge learning curve, sure, but I already have a wealth of knowledge in my mental locker, and this Bob is giving me a wholly inappropriate recommendation, even after he openly admitted an ignorance of autism issues. I think many autistic people will relate to this experience. We, autistic people, are in some ways a forgotten minority. We are all too often not recognised as a minority group within society, even though autism is a widely recognised phenomenon. Somehow, it appears to be socially acceptable for non-autistic people to tell us what our experience is, in a way that is no longer acceptable for other minorities.
This understanding of autistic people being a forgotten minority is one of my more recent learnings. In the seven months since I started this blog, I have learned huge amounts about the autistic experience, and the issues facing autistic people. It was my stated intention with the blog to inform as I learn about autism. What I didn’t expect was to start to feel part of a wider autistic community online, finding personal resonance with the experiences, frustrations, and humour of so many autistic people. We don’t always agree, and sometimes I’ve changed my mind about things as I have continued to learn. I like to think I’ve been shrinking my ignorance and expanding my understanding as I’ve gone along. So on this week’s blog, I want to engage in a bit of a retrospective, and summarise a few of the most important things I’ve learned about autism since August of last year.
WHAT IS THE SPECTRUM?
People unfamiliar with autism commonly think that the autism spectrum is a sliding scale from mild to severe; if you are “on the spectrum”, you are autistic to some level of mildness or severity.
The truth is that the term spectrum refers to a vast array of autistic traits and characteristics. Every autistic person has one or more autistic characteristics, and each autistic characteristic can be of a different level of expression, independently of other characteristics. What’s more is that autistic characteristics are not static; they can wax and wane in terms of how powerfully they express or are experienced, by the hour, or week, or even year, depending on the individual concerned.
Almost everywhere I look online, autism seems to be visually represented by the image of a jigsaw puzzle piece. When I set out to create this blog, I looked around for an image to use as branding. It seemed obvious to use something based on the ubiquitous puzzle piece image. It was my first big error in my quest to understand autism, and to carry out my mission of informing as I learn. And it was my first big lesson in the politics of autism.
The puzzle piece is a bad idea, for two main reasons. Firstly, it represents autism as a puzzle, and by association, autistic people as a puzzle to be solved. A close synonym of puzzle is problem. Problems also need solving. But autistic people are not problems that need solving by neurotypical people. We are people in our own right, and deserve to be thought of as such. Infinity – ∞ – is much better if you’re looking for an autism symbol. And in any case, who exactly would take charge of solving the so-called autism problem? Could it be… Autism Speaks?
If you want to find out about autism, the first logical place to start is the internet, and once you start googling autism, along with all the puzzle piece logos, you’re very quickly going to stumble across Autism Speaks; an organisation that claims to want “a world where all people with autism can reach their full potential”, and in addition, “Autism Speaks is enhancing lives today and accelerating solutions for tomorrow.” Sounds good, yeah? Wait a minute! Did they say, “solutions”? Didn’t we just talk about autistic people not being problems to be solved? Does this Autism Speaks outfit now sound a little dodgy? Well, we’ve barely scratched the surface.
This vile organisation views autism as a disease to be cured, a horrible affliction that steals “normal” children away from parents and leaves them with autistic changelings. Autism Speaks had also supported the ridiculous and now utterly discredited idea that vaccines cause autism. They also back “therapies” that are ultimately harmful to autistic people, such as ABA (more on that shortly). They have even merged with another organisation called Cure Autism Now – the name should tell you all you need to know.
Autism Speaks are also behind the “light it up blue” autism awareness campaign, so with autism awareness week upon us, it’s worthwhile ignoring “light it up blue” and going with #RedInstead.
Autism Speaks is almost universally detested by autistic people. Many of us see it as a hate group, as it is bent on eradicating autism, which necessarily means eradicating autistic people.
ABA, CURES, AND THERAPIES
There is a huge money-making industry based around treating and curing autism, which is quite incredible seeing as autism is not an illness. This industry includes dangerous fakes cures such as bleach drinks, along with other useless snake oils, and many types of so-called “therapy”. Chief among these is ABA, or Applied Behavioural Analysis. Some parents of autistic children swear by ABA, claiming it is a huge success. However, the question should be success at what, exactly? ABA works a bit like training a dog: “good” behaviour is rewarded, and “bad” behaviour is punished. What constitutes “bad” behaviour? Anything that looks or seems autistic, seeing as the aim of ABA is to make autistic children indistinguishable from their neurotypical peers. In the early days of ABA, punishments included physical beatings and electric shocks – I am not lying or exaggerating; this is factually correct, and just as awful as it sounds. These days people say “new” ABA has changed and moved on. It has; the electric shocks and beatings seem to be confined to the past. But at its root, ABA is forcing autistic children to behave differently than their natural inclinations. As a result, many of the autistic people who come out the other side of ABA are left traumatised, depressed, and anxious. Some are later diagnosed with PTSD. Some take their own lives. ABA is not good. Avoid it.
Autistic people often mask or camouflage their autism in order to fit in with people around them. This masking means changing behaviour, for example engaging in social events even when suffering from crippling social anxiety, or suppressing stimming behaviours so as not to attract attention, and many other things.
Sometimes, autistic people will mask deliberately. Sometimes, masking is unconscious, taking the form of learned or copied behaviours – this is common in autistic people who don’t yet know they are autistic.
Whether done consciously or unconsciously, masking is hard work because the person is suppressing natural habits and behaviours. Over extended periods, it can be utterly exhausting, and eventually, this leads to burnout. I talked about masking in an earlier blog post.
When the exhaustion that comes from being an autistic person trying to operate in the neurotypical world reaches unbearable levels, burnout kicks in. Burnout is emotional, mental and physical. It is exhaustion, anxiety, depression, sickness, and physical pain. It is a pit of despair. In my case, I have never fully bounced back from it, and I assume I never will. It is as though bits have been chipped of me that cannot be repaired or replaced. Autistic burnout is not the burnout of the hard-working businessman who needs a vacation. It is living horror. If an autistic person says they have burned out, don’t underestimate how bad it is. They might not look like they are suffering, but that’s probably because they are masking it. Which is, of course, a recipe for the vicious circle autistic people often find themselves in. I talked about burnout in an earlier blog post.
ARE AUTISTIC PEOPLE DISABLED?
Always good for a passionate disagreement, this subject. Like a lot of the linguistic-semantic politics of autism, it’s easy to go down a rabbit hole while chasing definitions of disability. What I’ve earned is this: Autism itself does not disable people. But living in a world largely created by and for neurotypical people does disable autistic people. It is extremely hard, often harrowing, living in that world. As such, we should be considered disabled. Many of us struggle so badly in what is effectively an alien environment that we need extra help. As such, it is vital that autism is legally classed as a disability, opening the way to disability benefits for those in need.
Do I have autism, or am I autistic? It’s a hell of a question. The idea behind person-first language is that people should not be defined by their disabilities so, for example, you should use the phrase, person with blindness rather than blind person. This might seem to be well-meaning at first, but it is nonsense, and most disabled people have rejected person-first language. Generally, disabled people don’t feel ashamed of being disabled. We’re okay, thanks, and we don’t need ableists who feel embarrassed on our behalf telling us how we should describe ourselves. Interestingly, it goes a bit further where autism in particular is concerned. Proponents of person-first language claim disability shouldn’t define a person, but autism does precisely that: Autism is a difference in the brain. The brain is the very seat of personality; our brains are us. Autism defines every bit of me. Autism is not something I have, or something I am with; I am autistic.
THE FORGOTTEN ONES
Autistic people are the forgotten minority. So many wrongs have been inflicted on autistic people throughout history, but the types of wrongs tend to be seen separately, as disparate issues. If autistic people are ever to be fully accepted by neurotypical society, we need to address this situation. We need to shout about the various injustices and atrocities carried out against autistic people, and put them all under one heading: The abuse of autistic people.
Let’s look back at the birth of autism as a recognised phenomenon. We can trace this back to Hans Asperger, and Nazi Germany. Autistic children were routinely slaughtered in Nazi Germany, in the most horrible ways imaginable, and Asperger played his part in that (which is why the term Asperger’s Syndrome is fading away, and rightly so).
After the war, in places like the USA, if you were autistic, you could expect to be institutionalised and left to rot. Or as an autistic child, you could be separated from your parents because it became flavour-of-the-month to blame autism on allegedly cold, uncaring parents – the so-called refrigerator moms scandal. We now know this to be nonsense, because autism is genetic, but at the time, many autistic children and their families were traumatised by this ridiculous accusation.
Then came ABA, and the screaming and shouting at autistic children, the beating of them, the electric shocks, all in the name of “therapy”.
If that wasn’t bad enough for autistic kids, when they grew up, they could look forward to being forcibly sterilised, thanks to horrible eugenics policies that linger even today.
These days, never a week goes by without a story in the news of autistic children being assaulted, bullied, or even shot by police, all for the crime of being autistic. Autistic people should be worried about having a meltdown in public, because they may be dealt with via prone restraint; a method of pinning someone face-down on the ground, which has already killed people.
Autistic people are more likely than the general population to be imprisoned, to be unemployed, to have financial problems, to be clinically depressed, and to take their own lives. In current times, depending on which research you look at, the average life-expectancy of an autistic person is between 36 and 54 years. This means I am already on borrowed time.
Autistic people are discriminated against daily, both online and in the real world. The deployment of terms like retard and on the spectrum as insults is commonplace. When I polled autistic people, I found that nearly two thirds of respondents had been subjected to physical abuse or assaults due to being autistic, and 90% – yes you read that right, 90% – had experienced non-physical abuse or bullying.
LAUGH OUT LOUD
Despite all the things against us, all the strife and discrimination we face, autistic people tend to have a great sense of humour. And it’s almost always kind, self-deprecating humour. Jokes and comments shared between autistic people in online communities about our experience are hilarious – although maybe only to us. We get it…
That’s all for this week. Thank you for reading, have a great week, enjoy the increased daylight hours, and I’ll see you soon.
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 resources 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.