I wanted to be able to write a longer piece about a topic which affects our community, and the planned topic for this piece came from LGBTQ+ Autistic community, specifically from the Nottinghamshire area. Nottingham is home to one of only six gender identity clinics (GIC) in England. The GICs are specialist gender services, able to diagnose gender dysphoria and prescribe treatments such as hormone replacement therapies (HRT; estrogen, testosterone; E, T; titty skittles, vitamin T; anti-cistamines). Being able to access medical gender affirmation therapies has been shown to reduce suicidality for transgender and non-binary individuals (Hughto et al, 2020). The wait times for an initial consultation with these clinics range from 36 to 60 months. 60 months is 5 years.
Thus, I had assumed that this was a topic which would come up on multiple occasions. In actuality, during the weeks we were meeting, Sia released her film “Music”, which provided an excellent example of what happens when you try and portray an individual from a group of people that you not only refused to collaborate with, but decided to outright ignore the views of.
Music kept coming up. People were angry, and hurt. In refusing to engage autists with the creation of her autistic character Music, she has created caricature, a mockery, an “uncanny valley” superficial shell of a character. We can tell when you’ve not engaged with autists, because you can only create a superficial shadow – you can make her move her hands “in that way”, but to us it looks empty because you’ve failed to represent the purpose behind the movements. Behind autistic behaviours is autistic cognition. You can’t represent autistic cognition without communicating with us. I know they probably look like empty behaviours to you – there’s no reason why you’d do those things, and therefore there’s no reason why we should do those things. But you and I don’t think the same. We don’t experience the world in the same way, and we don’t respond the same way. We spend so much time and energy trying to accommodate the allistic society we find ourselves in, bending ourselves backwards to try and adhere to social norms that we don’t understand – the very least you could do is listen when we try to tell you that the way you are depicting us is wrong. And it is all of us – autism representation in the media is scarce (think about heterosexual representation. You’ll probably find a heterosexual character in 99% of media.), so when you add more stereotypes and misinformation to that very small web of public knowledge, it harms each and every one of us.
Why does it harm us? Well, the media is where most people are getting their understanding of autism. The general public don’t go on training courses to learn about autism – heck, even professionals rarely do. The training courses are not good sources of information about autism, and people aren’t even accessing them: they are getting their understanding of autism from individuals in their families, and from the media representation. They are making decisions which affect our healthcare, our careers, and our benefits based upon the image of autism that they hold in their head (typically some sort of mash up of Rayman from Rain Man, Sheldon Cooper from the Big Bang Theory, and of a young boy who appears to ignore the world around him in favour of a toy train), and not upon the reality of what it is to be autistic.
TV Tropes writes about the trope of the tragic autist. “While there are more males than females diagnosed with autism, there are plenty of autistic females out there. Research shows that autism presents in all sexes at a relatively even rate, merely being more apparent in males due to male socialisation and research bias. Autism lasts forever, and there are countless autistics who work, go to college, live on their own, and have healthy relationships. Furthermore, autistic people in Real Life are, well, actually real autistic people.
In contrast, the pop cultural representation of autism, called Hollywood Autism, which is most likely to be portrayed as a white, cisgender, heterosexual male and by an allistic person, especially in Live-Action TV and Film. It is most common for an autistic character to be a child and if he is an adult, he’s most likely to be the Idiot Savant, a creep, or simply a Manchild/Kiddie Kid.
He is portrayed as almost completely lacking emotions, empathy, and compassion. He either doesn’t talk a lot or talks too much. Folks in his life think he’s boring, annoying, nerdy, weird, or even creepy. Additionally, he is totally unable to live what most people would call a normal life and is ultimately a burden on those around him. They are also portrayed by allistic actors, ones who probably weren’t picked for an experience of living with Autism, or, considering the accuracy of their portrayal, even for knowing somebody who’s autistic.
Most controversially, their lives are rarely depicted as being as fulfilling or as much of a life as that of someone who is not autistic. Although there have been more examples of autistic adults in media whose lives are depicted as non-tragic and even find romance and have children, they are still far rarer than examples of children and adults whose autism is shown as tragic. Finally, due to the overwhelming attitude that autism is automatically a tragedy in all cases rather than a different way of being or a disability that can be lived with and managed, it is common for an autistic character to miraculously be cured of his autism, usually through Applied Phlebotinum. While commonalities between most individuals do exist, real-life autism is much more complex than how this trope portrays it, branching out in a wide variety of ways from person to person, making this trope’s Truth in Television status too questionable for real life examples.”
The fact is, autistic people are far more diverse, interesting, and deep than one would imagine from looking at the representation of autism in the media. Autistic people are twice as likely to be not-heterosexual than allistic people (George & Stokes, 2017), and three times as likely to be transgender or gender divergent (Warrier et al, 2020). There are autistic people of every race, age, and gender. Everybody is living a completely individual life; everyone has a story that would break your heart.
This is not represented. There seems to be a single form of TV-ready autism, a single form of TV-ready queers – depictions of life that are more easily digestible to the majority of the population, who want to consume media that reflects and validates their worldviews. “Results indicate that while traditional media (particularly television) creates a common dialogue and validates identity, it continues to represent LGBTQ people as one-dimensional and stereotypical, ignores many LGBTQ sub-groups, limits LGBTQ young people’s perceptions of their future trajectories, and offers no opportunities for critique.” (Mcinroy et al 2015)
“The central argument is that culture should be understood as a dynamic process as opposed to being static and essential. Therefore, the media have to be situated as institutions that allow for cultural development: the media have to be positioned as enablers and not simply as preservers of cultural diversity.” (Fürsich, 2010)
We aren’t the majority of the population and we don’t want our representation to be skewed and shaped and manipulated into something easily palatable. Of course we want to be accepted and respected within society, and media representation is a good way to be getting there. But we don’t want to be accepted and respected in society for something that we are not. We want the full, rich depths of our lives to be represented. And we want to be the ones representing that.
“The basic definition of representation in the media is simply how media, such as television, film and books, portray certain types of people or communities.” (Arab film institute).
“On the morning of 12 October 1492, a gathering of Arawakian Lucayos discovered Christopher Columbus and his sailors on the eastern shores of their island homeland of Guanahani.” (https://journals.sagepub.com/doi/abs/10.1177/030639688802900401?journalCode=racb)
An “armchair columbus” is probably about right when it comes to media representation of minority groups, such as LGBTQ+ and autistic individuals. Columbus did not go to the Americas and learn about the culture and history of the Arawakian Lucayos and other native groups, in order to report back an accurate representation of these people. Throughout history, the people who have power frame themselves as the norm. The people who have the power are overwhelmingly straight white allistic males, who use their power to uplift and magnify the voices of more straight white allistic males. This continues onto the screen; of the top 100 grossing films of 2019, women represented only 10.7% of directors (https://womenandhollywood.com/resources/statistics/), and thus one assumes that 89.3% of directors are men, because if a transgender or nonbinary person had directed one of the top 100 grossing films of 2019, I would have heard about them. I don’t know of any autistic directors, beyond potentially Stanley Kubrick: “Dr. Michael Fitzgerald and co-writer Viktoria Lyons diagnosed Kubrick in retrospect, discussing him in their book Asperger Syndrome: A Gift or A Curse?” (https://366daysofautism.wordpress.com/tag/stanley-kubrick/)
People who are not autistic will have biases about what autism is. Often, when creating an autistic character they fail to discuss with autists how the character should be conceptualised, and typically the autistic character does not seem to play any role beyond being a platform for the allistic characters.
Read this quote from Women and Hollywood, in a guest article called “Autism Stories Are Women’s Stories, Too”:
“The script is written by Jennifer Deaton, the aunt of a niece with autism. I’m the mother of a child with it, too. Through this fictional story — this fantasy — we share a reality: what it means to live with and love a child with profound challenges. The impact it has on siblings, on a marriage. How that challenge can crash us into our lowest depths, and how that love can raise us to our highest selves — often in rapid alternation. Most films and TV shows portray the small percentage of people with autism who are intellectually gifted, misleading the
general public to think of most as “quirky geniuses” who’ll end up in Silicon Valley. In fact, many if not more resemble the child in our film, who is functionally non-verbal. Autism is a lifelong condition; children outlive their caregivers, yet few achieve independence. Today, one percent of Americans have it; 1 in 58 children. And there’s no sign it’s letting up. Is it an epidemic? We don’t know. But we do know it’s a national crisis.”
Can you see how they have managed to make an autistic character not an individual, but as a platform to discuss how “difficult” and “challenging” we make allistic lives?
“How that challenge can crash us into our lowest depths, and how that love
can raise us to our highest selves”. The autistic character is simply there to show the emotional journey of the allistic characters who suffer from our existence.
This is not the representation we want. We do not want the main representations of us in the media to be about how we make those around us feel.
We want representation that is about us.
Would you be comfortable watching a movie about a straight man and the difficult time he has when his best friend comes out as gay?
Would you want to watch a movie about a white man and the difficult times he has being friends with a black woman because of the intersecting discrimination she faces in her life?
Would you want a movie about violence against women to be centered on how this makes a mans life difficult?
We are autistic people. We have depth. We do not want to be represented as a challenge for an allistic person to overcome. We do not want narratives about how difficult we are to love. We are not here to be a stepping stone off which allistic people can emotionally grow. Go and do your emotional growth elsewhere. We want narratives about us, and we want narratives by us. There are autistic directors. There are autistic writers. There are autistic actors. If you want movies with autistic characters, you need to involve us, because you will do it badly. How do I know you’ll do it badly? Because if you’re not autistic, you do not know the niches of an autistic life. You will continue to write empty, stereotyped, caricatured versions of who you believe we are. We want to write our own stories. Why are you trying to write our stories for us? Let us write them!