Hello, and welcome back to The Autistic Writer. I hope you’re all well. In this week’s blog, I want to return to the subject of the language we use when talking about autism. It was prompted by an interesting conversation with someone I have a lot of respect for. Allow me a little self-indulgence as I meander a bit before hitting my central point…
When I was a little kid, I basically lived for Marvel Comics. I loved them. Whereas most kids I knew were reading The Beano and The Dandy, which barely raised a smile from me at the best of times, I was immersed in the dramatic, soap-opera escapades and world-saving heroism of these American heroes. My absolute favourite was Spider-Man. I’m talking here about the Spider-Man of the early 1960s, written by the legendary Stan Lee, with art by the equally legendary Steve Ditko. Unlike the somewhat cool and quirky modern-day movie Spider-Man currently played by Tom Holland, the original Spider-Man’s alter-ego Peter Parker was a desperately introverted, bookish outsider, perpetually bullied and ridiculed by other schoolchildren. He was more interested in science than sports, and he fitted into no social groups at all. He was a loner; lonely and misunderstood. But when he put on his costume and mask – yes, mask, here comes the autism stuff – he was set free… apparently… to become wisecracking, supercool, ass-kicking superhero, Spider-Man. Except it never quite panned out for him. Maintaining the mask was hard, and Peter even tried to retire Spider-Man altogether as the misery piled up around him. A mask, it seemed, could hide Peter from the world, but it couldn’t hide the world from Peter. God, I loved those early Spider-Man comics so much.
The first Spider-Man comics launched three years before I was born, but I was lucky enough to have an older family friend who had been collecting Marvel stuff from day one, and who let me borrow and read them whenever I wanted, including some extremely valuable ones. Spider-Man resonated with me for reasons I didn’t understand as a child, and it’s only looking back I can see the parallels with autism; the youngster who didn’t fit in socially when being himself, but who found a niche by adopting a different, contrived identity.
Spider-Man wasn’t my only favourite. I also loved The Fantastic Four, especially The Thing who was always pretending to be a happy wisecracker, but was hurting inside because everyone saw him as a monster (he thought), rather than the real person he knew himself to be. Ah, the parallels!
Before the current massive interest in superheroes ushered in by the big-budget Marvel movies, a lot of people looked down on the genre as something worthless, childish, with no lasting artistic or literary impact. This perception wasn’t helped by DC Comics’ camp Batman of the sixties. But in the early days of Marvel Comics, Stan Lee, Jack Kirby and Steve Ditko were trying to do something a little different. They were making comics, yes, and they were aimed at kids, yes, but they were also aimed at discerning teenagers, and there was a genuine attempt to use fantasy to reflect on real life, which is, of course, what all great fiction does. Some of the stories were mythic in scope and power, and others were a bit more clunky with the metaphors. For example…
In 1965, Marvel published issue 45 of The Fantastic Four; a story that introduced a bizarre group of superpowered beings known as The Inhumans. Hidden away in their secret land of Attilan, The Inhumans were ruled by their tragic king, Black Bolt. The tragedy of Black Bolt was his superpower: His voice created devastating sonic shockwaves with huge destructive force. But he couldn’t switch the power off. Any word he spoke, or even whispered, could unleash destruction.
Even as a kid, I could feel how unsubtle this multi-level metaphor was… reflecting the notion that absolute rulers have absolute power, and can decree death or war by verbal command. Also, the idea that, because their commands have such power, rulers must exercise great restraint. Etcetera. More broadly, Black Bolt’s disability reflected a concept that has become hugely important to me over the years, never more so than since I discovered I was autistic: Words have power. Regular readers will know this phrase has become almost mantra-like for me. And now we’re really getting to the autism stuff. Come with me…
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I’ve spoken repeatedly about the importance of the language we use when talking about autism and autistic people. The reason the words, terms, and phrases we use are so important is this: We use words to communicate ideas. The ideas (thoughts) that people have shape their behaviour. And our behaviour affects other people. So words can hurt. Words can kill – take false court testimony in a case that leads to a death penalty, for example. Furthermore, people have a tendency to do as they are told, particularly when the order comes from someone perceived to be in a position of authority- the infamous Milgram Experiment illustrates this in stark fashion. An air of authority carries weight; not just with people, but with words. People are more likely to be influenced by language that seems authoritative rather than casual, even if the seemingly authoritative language is essentially nonsense. Politicians make careers out of this phenomenon, as do prank researchers who send nonsense papers to journals and see them published as serious material. Basically, language (words) persuades and influences, and the more authoritative the language seems, the more likely it is to persuade and influence, even if the content is worthless. With me so far? Good. Let’s look at some seemingly authoritative language about autism that is problematic…
Purely as one example of how language can be problematic when talking about autism, let’s start with the term, Diagnosis. I have an “official” autism diagnosis. Actually, the full diagnosis is Autism Spectrum Disorder (formerly Asperger Syndrome). I am very grateful for my autism diagnosis. During my time on the waiting list for an autism assessment (nineteen months), I researched a bit about autism, and as a result, I was pretty sure I was indeed autistic. In fact, I effectively self-diagnosed. But I did not have the confidence to publicly declare myself absolutely, unequivocally autistic. I mean, what if the expert said no? I’d look like a fool! I desperately needed to know what the explanation was for me being me, and having such difficulty in life just by being me. My diagnosis gave me that answer. (Well, in reality, it gave me a label, but it was an important start.) But there is a lot wrong with the term, diagnosis. When you hear the word diagnosis, generally your mind subconsciously adds the prefix medical to it. Diagnosis is used for illnesses and diseases. People get diagnosed with malaria, and lupus, and liver disease. A diagnosis is what you get when there is… *gasp* something wrong with you. Now, some people disagree with me on this, and they say, diagnosis doesn’t always refer to illnesses, it can refer to a result of a critical examination of something, like a text. This is true. But it’s never wise to hang your argument entirely on a dictionary definition. People use language the way they use language, and dictionaries be damned. Autism is generally “officially” diagnosed by mental health professionals. In fact, it is often misdiagnosed as depression, anxiety, bipolar disorder, or many others.
As long as we use the term diagnosis in reference to identifying autism, we will keep feeding into public perception that autism is a mental illness. But… so what? Why am I the voice of doom, here? Am I demonising mental illness as something I don’t think autistic people should be associated with? Hell no! I have mental health problems. I’ve struggled through my whole life with depression and anxiety. After years of covering that up, I now speak about it loudly, because mental illness needs to be brought into full public discussion and understanding. I am in no way trying to throw people with mental illnesses under the metaphorical bus. Autistic people are more likely than the general population to have mental health problems. Some fools take this to mean that these mental health problems are autism, or that the prevalence of mental illness in autistic people means the two must be inextricably linked. That is a logic fail which I will – I promise – cover in a future blog post. But for now, let me make this further point…
Words perpetuate and disseminate ideas. The term diagnosis in relation to autism places the idea of autism as an illness in the public consciousness. How many times, when someone looks ill, do we ask “what’s wrong with you” or a similar phrase? We know what we mean by that, but there is a lingering under-idea… Wrong. What’s wrong with you? Look at the way, over the years, people with mental illnesses, or AIDS, or many other conditions, have been mistreated by society. Sometimes, our culture demonises illness. And this demonising process is also happening to autistic people the world over. By adopting a medical paradigm of autism, the establishment has empowered so-called experts to describe autistic people in terms of deficiencies, effectively dehumanising us. Some of these claims of deficiency are outright lies, and have been debunked by more enlightened people in the mental health fields. But still, the myths persist; myths that autistic people are violent, dangerous, incapable of love, incapable of empathy, have no sense of humour, and so on. Myths that there is… something wrong with us.
Interlude: A brief message
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Newsflash: There is nothing wrong with being autistic. We are neurodivergent; our neural architecture diverges from what is commonly seen as normal, but which is, in reality, just hegemonic. We autistic people are a social minority. Can you imagine any other social minority accepting their essential difference being defined as mental illness? For a long time, people in the gay community were treated as mentally ill, resulting in the horrors of gay conversion therapy, and chemical castration. Things are slowly improving for the gay community, thank goodness. But we, the autistic community, still have a long, long way to go. We still have to fight the war of ideas being waged against us. And much of this onslaught of unhelpful ideas; the common public misunderstandings of who and what we are, spring not only from self-interested academia, but from ordinary daily conversations and social media posts that repeat unhelpful words and phrases about autism. So going back to my one, isolated example; the word diagnosis, am I saying we should ban the use of that word in relation to autism (along with the many other damaging terms)? The answer is not straightforward…
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I’ve already said that I have an “official” autism diagnosis. This is a fact; I have the documents to prove it. I can’t pretend the diagnostic process doesn’t exist, or that diagnoses don’t happen. I sometimes refer to myself as someone who has been diagnosed with autism, even though I prefer the identity-first term autistic person rather than the person-first language of with autism. You see, I was diagnosed with autism; it happened. Talk of diagnosis of autism will continue because that’s what happens. The specialist who diagnosed me was great; she was extremely patient and understanding with me – she had to be, as I didn’t make it easy for her, and I was an emotional mess throughout the process. And she was the first person to tell me that being autistic didn’t mean there was something wrong with me. I needed to hear that, because so much of what I was coming across in popular media was telling me there was something wrong with me. So, when we’re thinking about how to deal with the unhelpful language around autism, we have to be careful not to demonise our allies. I think I might have walked that line somewhat carelessly at times.
So, how do we deal with the fact that the power of language is such that innocently repeated words and phrases merge in the public consciousness to perpetuate unhelpful ideas about autism, and the discrimination against autistic people? Context is everything. In daily conversation, I’m not going to give every person I hear using person-first language an immediate telling-off, particularly if that person is trying to understand me and help me. Instead, I think we the autistic community must continue to talk about, post about, blog about, and tweet about, our language preferences at the same time as talking about the autistic experience. We need to drip-drip this information into popular culture constantly. Here are some thoughts about language and autism…
- I have an autism diagnosis that I am grateful for, but it’s not a diagnosis of illness, folks. The process is diagnostic, but the phenomenon is not medical diagnosis.
- A person can make a point quickly and effectively by saying I have autism, but I cannot take off my autism like a hat, or be treated for it and have it removed like a kidney stone. My autism is me; I am autistic.
- I respect everyone’s right to free speech, and to use the words they want… but I identify as an autistic person, not a person with autism, and I expect others to respect my right to identify thus.
- Similarly, I respect everyone’s right to an opinion, but if someone goes online spouting opinions that misrepresent me or any other autistic person, by deploying words such as diagnosis, disorder, and condition in a mendacious way, I’ll challenge them with my own right to a – much more informed – opinion.
That’s all for this week. Until next time, take care, be good, stay proud.
Darren
Why Do I Write This Blog?
When I first found out I was autistic, I was a middle-aged adult and I knew nothing about autism. I quickly learned that there was a serious shortage of information and resources for adults in my situation. With this blog, I aim to inform about autism and autism-related issues as I learn, hopefully helping people who are on a similar journey of discovery. Like anyone who writes a blog, I want to reach as many readers as possible; if you like what I’m doing, please share it with your friends and followers. I will never hide this blog behind a paywall, but running the website does incur costs. If you would like to support, feel free to make a small contribution at BuyMeACoffee.Com.
You might also be interested in David Scothern’s blog, Mortgage Advisor on FIRE, which covers a range of topics including mental health issues and financial independence.
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