Part 14: Words Have Power

Hello, and welcome back to The Autistic Writer.

I’ve had a good week in many ways, although not without its disruptions and talking points. On the health front, I’ve had to make some changes, which I will talk about shortly. I have been writing and reading a good amount over the last seven days, and anyone who knows me will understand that puts me in a good place. But as I write this, the thing uppermost in my mind is something that happened yesterday. I posted a simple meme on Reddit’s Autism sub. It was a fairly lighthearted meme, although it pointed to a subject I feel is important. I thought it would garner one or two upvotes, maybe. I was shocked by the heat this meme generated. There was a huge amount of support for it, but also a small hard core of people vehemently arguing against it. One thing that came out of the debate (still ongoing on Reddit) is something I have known since childhood: Words have power.

Words disseminate ideas. Words influence, direct and change thoughts and opinions – sometimes in subtle, treacherous and unexpected ways. Unfortunate groupings of words create unhelpful ideas, and this is hugely important for a fiction writer because there is a tendency in people who see themselves as critics to infer everyman interpretations from what one writes. So, to give a really silly, clumsy example that illustrates a point: If I were to write a story in which, say, a blind person was a brutal murderer, someone would be asking what my problem was with blind people. Why was I representing blind people as killers? This would be an everyman interpretation; my blind character being seen as representative of my approach to all blind people. Yes, that example is a bit silly, but it does contain a serious point: As a writer, you have to think carefully about what your words say, and what inferences people can, consciously or unconsciously, draw. If the story in the example above had many characters, all of which were fully sighted except two, and of these two blind characters, one was a killer, and the other, say, a Nazi, then there would clearly be a representation issue, and I would sending out unhelpful ideas into the world in that story. The same would be true if, instead of blind people, the issue was about people from a particular ethnic background, or a particular sexual orientation. Or autistic people.

Sometimes, a particular choice of a single word or phrase can have a huge impact on what people think. That impact might be obvious and explosive, or it might be subtle and insidious. There is a very famous example of how words can influence the way people think. In the early 1970’s, cognitive psychologist Elizabeth Loftus demonstrated that the phrasing of a question posed to witnesses of a car crash could effectively create false memories about the details of the crash. This had huge implications for witness testimony in courts. I repeat: Words have power.

It was an issue of phrasing on my meme that led to that absolute storm of debate on Reddit. So I’ve decided to make that the main focus of today’s blog, and go into it in some detail.

In this week’s blog…

Aberrations: A quick update on my novel-in-progress.

The Aut Life: How am I managing my mental health, and dealing with understanding what it is to be autistic?

The Aut Files – Words Have Power: Do I have autism, or am I autistic? What ‘s the difference?


Aberrations

I am enjoying writing this novel immensely. Right now, I’m heading toward the climax. There are still twists and turns to come in the story, and I care about these characters. Twice this week, I have failed to find time for my daily writing session, mainly due to some disruptive home improvement stuff going on. Nevertheless, progress has been steady. My word count for the week is a modest 3,020. The total word count for this first draft so far is 106,676, which means it will come it at around 140,000 words. That’s going to be a nice chunky book for my readers.


The Aut Life

I wrote a while ago about my decision to start taking anti-depressants to help manage my anxiety. At first, there were some troubling side-effects, which I mitigated by taking the meds at a different time of day. Things settled down, but some side effects persisted; insomnia was one. I also noticed that after about four weeks taking the meds, while I generally felt less anxious, whenever an incident of anxiety did arise, I would feel it very severely. I was also aware that I had become quiet, and that my thoughts tended to be focusing on negatives more than usual. I was starting to feel very unhappy. There was a certain quality to these thoughts and feelings that is hard to describe, but these, along with other side effects, frightened me somewhat. I made a decision to stop the meds. I am now not on any meds whatsoever. For two days after stopping, I felt absolutely awful, but then it was like a switch had been flipped, and people close to me commented that I suddenly seemed more cheerful. I certainly felt more positive.

This is not my first experience of incompatibility with meds. Over the years I have tried various anti-depressants, and always encountered difficulties with them. I have also tried CBT, and was spectacularly unimpressed with it.

What does this mean for the future of managing my anxiety – which I now know is triggered by the difficulty of living as an autistic person in a neurotypical world? Honestly, I don’t know. One obvious thing is that I need to make my life more comfortable, more autism-friendly. I’m working on that in various ways, but it’s going to be a few years before I can realise my dreams in that respect. It’s going to be an interesting journey ahead.


The Aut Files – Words Have Power

I like using the autism sub on social networking website Reddit. I only really discovered Reddit a few weeks ago, and I’ve found the autism sub is, for the most part, a really supportive and informative environment. I enjoy the self-deprecating humour many autistic people have about what they have to deal with, and many of us share memes about our experiences. Yesterday, I created and shared this meme:

Although the meaning of this meme is important to me, I didn’t expect it to make much of an impression. I could not have been more wrong. But first, let me give a little background.

It is a little over a year since I received my autism diagnosis. Looking back, I don’t really think the diagnosis, and its implications for my life, sank in for quite a while. I felt it necessary to tell some people close to me, and at work, about the diagnosis. But after that, I kind of just tried to get on with my life. However, my worldview had been shattered. I started seeing everything through the lens of autism, but that lens was cloudy. I didn’t understand enough about autism to be able to make sense of being autistic. My frustration intensified, and then I suffered a mental health crisis of depression and anxiety. That was a kick up the ass for me. I resolved to learn everything I could about autism, and that led to this blog; my attempt to inform as I learn. I vastly underestimated that scope and complexity of all issues around autism. I have made a couple of mistakes along the way as I have educated myself, and I have used language when talking about autism that now makes me cringe. Live and learn, eh? One of the things I have learned has to do with language usage around autism. It is this: I do not have autism; I am autistic. Some people will scratch their heads over this, I know. Some people will say there is no difference; the two phrases mean the same thing. Some people will say that the difference is petty, and that I am wasting time and energy even talking about it. Some people will disagree with me completely and say that the phrase I have autism is actually preferable, because it employs people-first language. All these arguments were made on a feisty comment thread that built up around my meme. In the comment thread, I got pretty angry with one person, and that exchange wasn’t particularly pleasant.

At the time of writing, the meme has garnered 818 upvotes, and a lot of supportive comment. There have also been a number of comments from people who are confused by the meme, and just don’t get it. And there has also been a number of dissenting comments from people who vociferously disagree with the sentiment of the meme, while other people have pushed back on the dissent, and explained the reasoning behind my meme. What is the fuss all about?

What did I mean with this meme?

The phrase I have autism, and all variants of it; I’ve got autism, or do you have autism, present autism a certain way. Firstly, autism is used as a noun in these phrases; it is a word that points to an entity. But is autism an entity? Autism is certainly used as a term for what is variously described as a lifelong developmental disability, a lifelong developmental disorder, or a neurological disorder. There are all kinds of problems with these definitions that I won’t go into right now because it could fill a library, but the one issue relevant here is that, really, autism is not one thing. The term actually refers to a bewildering array of issues (some call them symptoms, some call them behaviours, some call them disorders) which make up the autism spectrum. Autism is not one thing that you can have. But that is the least of the problems with saying I have autism. One thing about the effects of the neurological differences that are described as autism is the mental and physical health problems that accompany it. Neurological difference itself need not be a problem. But as many of us autistic people have found, being autistic in a neurotypical world is fraught with problems, from sensory overload, to communication differences, to relationship problems, to depression and anxiety, and much more. So, autism relates to health issues. But, importantly, autism is not an illness. You cannot catch autism. You cannot suddenly develop autism. You cannot cure autism. You cannot treat autism. You cannot excise autism. In this sense, autism is not something you can have. Being autistic is at the very core of an autistic person. Autism in not grafted onto a human being to make them autistic. Autism is not separate from an autistic person; you cannot talk about autism as something affecting an autistic person; it is who and what they are. The phrase I have autism mentally scans like the phrase, I have flu, or I have measles. The words have the power of defining autism as something it is not; something attached to or affecting a person. Does this matter? Well it turns out it matters a lot, actually.

One of the arguments in favour of I have autism is that it uses people-first language. Supposedly, people-first language springs from medical diagnoses and is intended to prevent a person being defined by an illness, health condition, or disability. It doesn’t only apply to medical diagnoses, either. It is used to avoid labelling people generally. A common example is that it is supposedly better to refer to someone as a person with alcoholism than as an alcoholic.

However, various groups have rejected being described with people first language. Many disabled people balk at being described as a person with [insert name of disability], as argued by Rachel Cohen-Rotenberg here.

In the USA, the National Federation of the Blind issued resolution 93-01 making clear their disapproval of person-first language:

Autism activist Jim Sinclair has summed up the situation succinctly: “Saying ‘person with autism’ suggests that the autism can be separated from the person. But this is not the case.”

But does it matter if people see autism that way? Does it matter if people see autism as separate to an autistic person? Again, the answer is yes. If autism is seen as separate to the autistic person, it doesn’t only perpetuate a suggestion that autism is something that can in fact be removed, or cured, or treated. It in turn perpetuates the terrible notion that autistic people need to be fixed; that they are a problem to be solved. And that leads us to the position some people have of seeing autism as a condition that steals normal children from their parents; the changeling position. And this brings us to Autism Speaks; an organisation that is justifiably detested by most autistic people. Autism Speaks uses its influence to pursue unhelpful agendas around autism, and has previously been embroiled in anti-vaxx nonsense. The organisation still pursues the idea that autism is a problem to be dealt with by the “solution” of eradication.

I am an autistic person. I matter. I live, breathe, and love. I am not someone that has autism, waiting for a cure to return me to normal, whatever that is. I am me. I am autistic.


If you’re on Reddit, and want to see the debate the meme triggered, click here.

That’s all I have this week. Until next time, look after yourselves and be kind to each other.


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