Part 16: (You Gotta) Fight For Your Right (To Autie)

Hello, and welcome back to The Autistic Writer.

As I type this, I’m on the sofa, with a hot beanie pressed into my lower back. Earlier in the week, I carried out a very minor DIY task; a bit of drilling to put plugs in the wall for a clock and a mirror. A nothing job. And yet half an hour after completing it, I started getting back pains. The pain has got steadily worse, and I’ve been taking paracetamol, using a pain relief gel, and today resorted to the hot beanie. It’s ridiculous. I’ve been hobbling about like someone’s cliched idea of a grandpa, stopping to wince whenever a new jolt of pain surged. I’ve been busy this week with various chores I’ve had to do, but I think everything is done now, so I’ve got the weekend to try to get myself sorted out before being back in the office on Monday.


Okay, I’m back. I had to take a break from the typing there to add a TENS machine to my pain management repertoire. I’ve had it attached for just a few minutes, and it already feels a bit better. Until I move. I’m using some pretty foul language in my head right now.

With my complaining out of the way, I’m happy to say I’ve had a fabulous week. There have been two major highlights, one of which I’m only going to gloss over in this blog; I’ve taken a big step towards making myself more financially secure in the future. It feels good.

But the other highlight is something regular readers will be expecting: I have finished the first draft of my third novel, and I’ll tell you more about the challenges I faced getting to the finish line, and exactly how good it feels in Aberrations, below.

This week has brought some disappointment, however. I became embroiled in two very different conversations on social media, triggered by the ongoing rumblings about Sia’s movie, Music, and the way it has approached autism. On Reddit, I found many people who had the same point of view as me; that Sia had got this one badly wrong. But there were some dissenters, and while I respect their positions, I was still flummoxed and disappointed by some of the arguments they used. But none of that was as disappointing as my conversation with someone tweeting under a pseudonym on Twitter. The comments made by the person I got into a debate with were outrageous and insulting at times, and it’s fair to say I vacillated between anger and amusement as things progressed. Interestingly, this Twit (it’s a word for someone who tweets), who appears to be neurotypical, had some points in his argument (before he fell down a lexical rabbit hole) that were aligned with arguments made by some autistic people on Reddit. It’s interesting, to me at least, because the battle lines in this debate, which is about neurotypical presentation and interpretation of autism in popular media, are not drawn between neurotypical and neurodivergent people; there is some serious crossover.

The experience of the online discussions has left me wondering why there is even a debate on this. I’ll discuss it in The Aut Files, below.

In this week’s blog…

Aberrations – The Aut Life: Combing two sections of the blog into one this week, as I discuss my feelings about finishing the first draft of the novel, and what it means to have done it.

The Aut Files – (You Gotta) Fight For Your Right (To Autie): With apologies to the Beastie Boys. Does it matter how autistic people are represented in popular media? And if the representation is in some way not right, should be be concerned? Should we do something about it?

Aberrations – The Aut Life:

I finished the first draft of my third full length novel, Aberrations, this week. Cue party poppers, champagne corks, etc. It’s been a long time coming, considering I started work on it in 2015. That was the year of fiftieth birthday; the year that it first crossed my mind that I might be autistic. My mental health was in a terrible state at that time. I dismissed the notion that I might be autistic (or “have Asperger’s” as I thought of it at that time, knowing almost nothing about autism back then). I had published my second novel, Abominations, the previous October, and I’d had extremely high hopes for it. I thought it might be the breakthrough that would lead to me being able to make my living from writing. Instead, Abominations had a little flurry of sales on release, some great reviews, and then sank without a trace. By the time I realised I had not made my breakthrough, and concurrently with my mental health plumbing new depths, I was already into writing the follow up to Abominations; the quasi-sequel Aberrations. But my self-confidence was plummeting. I began to feel like a faker. Maybe I wasn’t the writer I thought I was. Maybe everyone was laughing at me. Maybe I was out of touch with reality. I started to see the world differently, and realised at some level that the world had not changed, and I had not changed, at least fundamentally; what had changed was the way I was seeing myself. It was a very scary time, and I couldn’t write. I felt my writing was worthless. I felt I was worthless.

After a meltdown of epic depression-anxiety proportions, my employer referred to to an occupational health doctor. I’ve told this story before, so I’ll keep it brief; This doctor had a background in autism, and he saw through my unconscious masking with ease. Eventually, that led to my diagnosis.

During the 19-month waiting period for my diagnosis, I was questioning everything about myself, putting my head in the sand about autism, hating myself, and becoming paranoid. I could not write. I thought I would never be able to write again. This was not “writers block”, I thought (a phenomenon I had always, somewhat arrogantly, believed did not exist). This was something else; something very dark. I publicly retired from writing, removed all my books from sale, and deleted huge amounts of online data about myself. I was trying to erase myself.

What changed?

After my diagnosis, I was content to identify as autistic. In fact, I was content to define myself as autistic, such was my relief to get an answer to what had troubled me all my life. But I knew that being autistic was not the complete definition of me. So what was I?

For many years, writing had been my purpose in life. I saw it as a noble life. I think a lot about the philosophy of writing, about the reasons we tell stories, what those stories mean, and what the culture of storytelling means. As my mental health began to improve after my diagnosis, I started to wonder what my purpose in life was. Father and husband; sure. I get a lot from these very close relationships. But what else? There was something gnawing away at me, and the more comfortable I became as an autistic person, the more I felt I needed something else. There was a huge hole in my life where writing had been. That hole had been temporarily filled with everything around coming to terms with autism, and trying to escape from the pit of depression and anxiety I had been trapped in. But now…

Aberrations was in my mind; the unfinished story of characters who had seemed very real to me. From out of the blue, the urge to write returned. I wasn’t in a flash, it was gradual. It was like an itch that bugged me increasingly as they days went by. I took out the file, and read what I had written so far. It had been a long time. I read the first few chapters, and thought, Wow. Did I write this? Really?

Cautiously, I went back to it. At first just tweaking bits of what I’d already written. Then I started a new chapter. It felt good. It felt like going home. I wanted to try again, but I was frightened of failing. More than one person told me not to put myself under the same pressure that I used to. I was already on my way, but I made a commitment: I would attempt to write something every day, but I would not beat myself up if outside pressures meant I couldn’t always do it. I also promised myself that if I could just write a minimum of 500 words a day (a fraction of my old output), I would consider this a success. 500 words is not a lot, but daily it would add up.

Here I am now with a first draft finished. It’s been a bit of a rocky road, particularly in the last few chapters, where I felt I was having to restructure the climax of the story as I went. I had an outline I was working to, but I was constantly changing and rearranging those final few chapters as the finish line loomed. Eventually, I settled on a way forward, and wrote a huge amount over the last seven days. What I’ve ended up with is 57 chapters, just over 120,000 words. I’m happy with the storyline, but there’s a lot of tidying up needed, which is what the second draft is for. I’m already thinking I’ll have to rewrite the epilogue almost completely. But this is exactly why we write multiple drafts; you can’t get it all right at the first attempt.

The main thing is I feel like a writer again. A great deal of the progress I’ve made in this direction has been down to my autism diagnosis, and then deciding to educate myself about autism; to really understand what it is to be autistic. I identify as autistic, and I identify as a writer. I have rediscovered my purpose: I am The Autistic Writer.

The Aut Files – (You Gotta) Fight For Your Right (To Autie):

In case you’ve missed it, let me recap a little of what has been going on with pop-star Sia, and her movie, Music.

Sia is a successful singer, having performed solo and in a band. She has collaborated some pretty big artists (not my taste, but they include Rihanna, Flo Rida, and David Guetta). She has won Grammy awards. So she’s a bit of a big deal in the music business, apparently. Personally, I’m not aware of ever hearing one of her songs.

Sia has co-written and directed an upcoming movie, Music. The release date for the movie has been moved back from its original date in 2019, and is now expected to be released in February 2021. A central character in the movie is a young autistic female. This is where the problems start.

My first encounter with this was on Twitter, where there was some anger that Sia had cast a neurotypical actor in the role of the autistic character. There were people who felt that an autistic actor could and should have been given the role. The issue here is one of representation, something I will come back to shortly. It was this issue of representation that piqued my interest. It is fact that many, many autistic people struggle for acceptance in life generally. If you look back to when autism was first being recognised, by Hans Asperger in Germany, we see that autistic children were treated horribly, tortured and murdered by the Nazi regime in huge numbers. In America, huge numbers of autistic people, considered “feeble-minded” or “retarded” were forcibly sterilised as part of some stomach-churning eugenics agenda. When ABA “therapy” arose, autistic children were routinely shouted at, beaten and electrocuted as punishment for non-compliance with neurotypical behaviours. Many of the victims of this “therapy” have gone on to suffer from post-traumatic stress disorder. Autistic people have a higher incidence of depression, anxiety, and suicide than the general population. Autistic people have a higher chance of being unemployed than the general population. Taking all these things into account, it is fair to say that autistic people are an impoverished minority suffering from all kinds of discrimination, and who are under-represented in the workplace.

Sia, who has claimed her movie is a message of “love, love, love,” to autistic people has chosen to cast a neurotypical actor, Maddie Ziegler, in the autistic role. But there’s a background to this:

Initially, Sia tried to cast an autistic “friend” in the role, but found “casting someone at her level of functioning was cruel, not kind.” She cites this as the reason for her decision to cast a neurotypical actor in the role.

There is a further issue. While Sia has described her movie as “a love letter to caregivers and to the autism community,” she has also involved the organisation Autism Speaks in the project. Sia has denied the organisation was involved in production, but they have been involved in promoting the movie. Autism Speaks is almost universally despised by autistic people, for a number of reasons: They view autism as a disease for which they are actively trying to find a cure. They present autistic children as in some way broken, and portray autism as something that steals healthy children from their parents. They have previously backed the vile and discredited notion that autism is caused by vaccines. I’m aware I’m skimming over this a little; to be honest, books could be filled about the problems with Autism Speaks, but the organisation is not the focus of this blog. I’m just pointing out that Sia, for someone who claims to “love, love, love” autistic people, appears to have made serious error of judgement here.

So, here we have two main criticisms of Sia regarding this movie:

  1. She cast a neurotypical actor in the part of an autistic actor, and some people see this as wrong.
  2. She claims to be a friend of autistic people, with “love, love, love,”, but has involved Autism Speaks, which seems to seriously undermine that position.

Let’s have a look at these two criticisms, and see of there is any merit to them.

To me, it seems there are two issues feeding into this.

Firstly, can a neurotypical actor do a good job of portraying an autistic character?

Secondly, is it acceptable to cast a neurotypical in an autistic role?

When it comes to talking about movies featuring autistic characters, everyone seems to reference Rain Man, and with good cause. Rain Man was a movie that took a long time to come to screen from its original concept. There’s quite a story behind the movie, but one thing that sticks out for me is that the star, Dustin Hoffman, had been profoundly affected by the treatment he had seen autistic people endure in an institution he worked in for a while. Hoffman worked closely with an autistic person, basing his performance closely on that person. Hoffman is clearly an actor of huge talent, and he won an academy award for his role in Rain Man. The movie did great things for raising awareness of autism in the popular consciousness (although it did lead to many people thinking that all autistic people are like his character Raymond Babbitt, which is obviously not the case).

The fact that Hoffmann did such a good job in the role would suggest that a neurotypical actor can do a good job of portraying an autistic character. However, not all actors have the prodigious talent of Hoffmann, and not all of them would bring the commitment to research and focus he applied to that role. To draw an analogy, all artists have talent, but not everyone can create the ceiling of the Sistine Chapel. So my conclusion is that, in theory, a neurotypical actor can portray an autistic character, but that doesn’t mean any old actor can do a good job of it, so casting should be done with caution, and it is highly preferable to cast autistic actors in these roles.

I am L_Plate_Autist on Reddit. The actress was responding to a screenshot of a troll arguing with me on Twitter.

One of the reasons that neurotypical actors might struggle to portray autistic characters well is that by definition the brain of an autistic person works differently than the brain of a neurotypical person. The brain is the seat of personality; the core of who a person is. An autistic person has a unique lens through which they experience and interact with the world. How is a neurotypical person to go about reflecting this utterly alien experience? This is my answer to the question, can a neurotypical actor do a good job of portraying an autistic character? Maybe, but probably not, and best to avoid, especially when there are plenty of autistic actors who could fill the roles. We have Sia’s claim that she found “casting someone at her level of functioning was cruel, not kind,” but that was just one autistic actor. There are many autistic actors; a lot of whom have responded to Sia, asking why no auditions were held. Sia made a decision to go with a neurotypical actor, much as she made a decision to involve Autism Speaks, which to many, including myself, does not feel like a love letter to autistic people.

Not everyone agrees with my conclusion here. A common counter-argument is that actors are trained to act. Their job is to portray characters different than themselves. If you say autistic characters should only be portrayed by autistic actors, then you might as well say that gay characters should only be played by gay actors, and blind characters should only be played by blind actors, and so on.

However, there are a number of problems with the counter-argument. It assumes that the examples quoted are ridiculous for one thing. But are they? There was a huge amount of outrage over Eddie Redmayne’s casting as a trans character in the movie The Danish girl. There was similar anger over Hollywood whitewashing in the casting of Scarlett Johansson in Ghost in the Shell. James Corden’s recent campy performance as a gay character has also been widely slated. These are issues of representation, and clearly representation concerns go far beyond the autistic community.

Why does representation of minorities matter?

I’ve already mentioned some of the horrible abuses carried out against autistic people throughout history, and the effect this has had. Fair representation matters here, in the same way it does for gay or trans characters, or disabled characters, and for racial minorities, or any group who have suffered discrimination or abuse for simply being who they are. If you were making a movie about the experience of black slaves in the American deep south, would you cast a white actor in blackface as one of those slaves? Of course not; the thought of it is appalling. Why should this be any different for any other disadvantaged or disenfranchised group? How does it feel as an autistic actor to see a neurotypical actor cast in an autistic role in a movie which is about autism and claims to be a love letter to autistic people, in which one autistic actor was cast aside and no auditions held for other autistic actors? Pretty shitty, I’m guessing. Who is Sia, a neurotypical person, to decide what is right for autistic representation? Who is Sia to decide how an autistic character should be portrayed? Who is Sia to decide it is appropriate to involve Autism Speaks, an organisation that presents autistic people as problems to be fixed, and autism as a disease to be cured, in a movie about an autistic person? Where is her authority in these issues? Where is her ability to identify with what it is to be autistic? She has none.

I’ve taken some abuse on Twitter and Reddit for my stance with this, but I’m not backing down. I am autistic, and my autism is my experience. I do not need someone like Sia to send me some kind of misguided “love letter”. If her “love” includes sidelining autistic actors, and promoting her work with Autism Speaks, she can keep it. We are underrepresented enough in life, without this. You want to make a movie about autistic people? Make a movie involving people who understand the autistic experience. Do not just appropriate autism to further your career.

If there’s any doubt about Sia’s approach to autistic people, you only have to follow her tweets…

How would you know this person is a bad actor, Sia, if you didn’t audition?

We don’t need to see the movie to understand the issues around the production of the movie…
We’re not judging the move, Sia. We’re judging your approach to autistic people.

That’s all for this week. From next week, I’m going to change the format of the blog slightly, just streamline it a bit. Until then, stay safe and be good to each other.

4 thoughts on “Part 16: (You Gotta) Fight For Your Right (To Autie)

  1. The lack of auditions is problematic. Autism Speaks is a horrid source of information on autism. I am a high functioning member of the spectrum and if I could “speak” to Autism Speaks, it would not be pretty.

    But as to the other points…

    “Who is Sia to decide it is appropriate to involve Autism Speaks… etc.”

    Uh… she is the person making the movie? They’ll boost ticket sales?

    As I haven’t seen the movie and have no intention of seeing the movie I cannot comment on the resulting package. If the character is completely nonverbal, then an ASD-1 actor is not going to have it any easier doing it than an NT. If she wants to pick someone she knows well rather than looking around, to play the role, that’s her decision.

    Does the acting correctly portray the appropriate level of autism? But since the movie is a fantasy, even that might not matter so much as long as it isn’t a negative image. The final product is the only thing that counts.

    I don’t require that a movie about a blonde uses only natural blondes or movies about genius physicists use only genius physicists. Should Forrest Gump NOT have starred Tom Hanks and Gary Sinise? Should Big Band Theory NOT have used Johnny Galecki? Benedict Cumberbatch NOT have played Alan Turing?

    And if you have watched enough anime you’ll see that the characters are usually drawn with distinctly western features. That is how the Japanese market likes it. Mamoru Oshii, who directed the original “Ghost in the Shell” anime liked Scarlett Johansen because she does look a bit like Motoko Kusanagi and she has huge US cred. as an action superheroine.

    “Representation” can decay into mere bean-counting.


    1. Hi, thanks for the reply. Regarding your response to my my rhetorical question, ‘Who is Sia to decide,’ etc. Of course it is Sia’s movie, and so she has the right to do anything with it. But she doesn’t automatically have the right to be considered appropriate in everything she does. She doesn’t have the right to represent autistic people however she wants *without comeback*. She has the right to make her film, and the right to portray autism as she wants, of course, that is freedom of expression. But by the same token, autistic people like me also have the freedom to express our anger and frustration with Sia’s clumsy and harmful misrepresentation. That’s kind of the point of that part of the blog post, so when you reply “Uh… she is the person making the movie? They’ll boost ticket sales?” it’s not really addressing the issue I raise.

      I can say the same for your comment, “If she wants to pick someone she knows well rather than looking around, to play the role, that’s her decision.” At no pint have I said it’s not her decision. Of course it’s her decision – that’s kind of the point of my blog post: She has made a poor decision that impacts negatively on the autistic people she claims to “love, love, Love.” So it is difficult to see how your comment is relevant.

      As for your response asking whether the acting portrays autism correctly, and saying the final product is the only thing that counts: You’re wrong I’m afraid. I have no issue with the quality of acting in the movie, or the direction, or the score, the lighting, wardrobe, makeup, or anything like that. How could I – the movie hasn’t been released yet. I don’t have to have seen the movie to have the concerns I have discussed, because my concerns are out the issues *around* the movie. By saying the final product is the only thing that counts, you are trying to shift the conversation away from the issues I raise, to a conversation about the general movie production quality; something I am not discussing in my blog post.

      I’m concerned by your statement that representation can decay into mere bean counting. The statement at once trivialises issues of representation (“mere”), and ignores the types of issues at stake (“bean counting”).

      I could go on in a similar vein about other comments you make, but to be honest, I think my blog post makes my points clearly.


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