In modern day media, everywhere we look, there is increased conversation about including marginalized populations in what we produce and share with the world. The intention of this is to create a more diverse and well-informed landscape for the media we consume, and to amplify the voices of the most oppressed people in our communities in accurate and appropriate ways. In my experience thus far, it is a palpable effort in many ways. As with any changes, though, this effort is still a large work in progress – one which is lacking a clear focal point in some specific demographics, including one which happens to pertain to my own experiences. The demographic I am referring to is the autistic community. One thing I can say with utter certainty is that there are currently little to no voices of autistics – and other disabled people – being heard or accurately represented in the media. While there are many roots to this issue, I am going to address three of the most important ones in this essay.
Society at large may have honest intentions of advocating for the autistic community, but there are many obstacles preventing proper representation of autistics in the media. (1) Due to inaccurate, biased, and careless research by directors and behind the scenes researchers, the voices of autistics are often not taken into consideration, often causing media producers to miss the mark in the final product of their work. (2) The sources these people use tend to be societally renowned and neurotypically-based autism organizations, such as Autism Speaks, who are known for dismissing the voices of autistics and can be biased in the information they share. (3) These biases that continually plague the landscape of media exist due to decades of outdated research, which mostly focuses on how young autistic boys present. This research completely misses the fact that autistic girls, autistics in the queer community, and even autistic adults do not always present the same way as young boys on the spectrum. When combined, these three issues make for a web of misinformation, which actively prevents actual autistics from being heard in mainstream media sources.
In every movie or TV show I watch that has an autistic character in it, I am put face to face with some of the longest standing – & most harmful – stereotypes attached to the autistic community. While these characteristics may be true for some people on the spectrum, upholding these stereotypes gives people an incorrect idea about what the full spectrum looks like. This leads to mistreatment of autistics by trying to see them through only the lens of these stereotypes, and it fuels the spread of harmful misinformation – sometimes even causing physical harm. One movie that perpetuates these stereotypes in extremely problematic ways is “Music”.
The movie “Music” was produced by Sia, a mainstream singer and musician. It was released on February 10th, 2021. The movie is about a non-verbal autistic female named Music, who is put under the guardianship of her half-sister, Kazu. Nina Skov Jensen, an autistic 20-year-old female who was interviewed by “The Lantern” after watching the movie, expressed that “the way the stims and movements are mimicked is very hurtful to watch, as it is done very mechanically and by a non-autistic individual. This is the same way we [autistics] have been bullied and mocked our entire lives.” The article goes on to address other problematic content in this movie, including scenes where restraints were used on Music. The ASD Medical Director for Nationwide Children’s Hospital, Pankhuree Vandana, shared with the reporter that there are “several medical and ethical concerns” for anyone who decides to restrain an autistic child without training, like what is done in the movie. She shared how these are only done in “serious, life-threatening situations and under a lot of training and scrutiny.” The article also states that the United States Government Accountability Office reported “more than 20 children have died from restraint being used in schools”, in the last 20 years. That’s approximately one child being killed every year, autistic or not, with the restraint technique now being open-endedly displayed through Sia’s movie. Despite all of this discourse coming in an uproar from the autistic community, “Music” was originally nominated for a Golden Globe Award – thankfully, it got nowhere close to winning.
Another issue with this “Music” controversy is that one of the most controversial autism organizations in America was originally on board with this film – Autism Speaks. It is unclear as to how involved they were in the research of the movie, but the fact that they initially condoned such harmful perceptions of autism must be alarming to anyone who has not yet learned about their history with ableism. At a first glance one might think that Autism Speaks benefits the autism community, and the people behind the organization may believe that the organization’s motives are beneficial to autistics – and yet, the voices of many autistics are constantly silenced by what they have chosen to promote. An article on Autism Speaks written by Sarah Luterman from The Washington Post shares how “[Autism Speaks] spent years promoting ideas and information that furthered stigma and misunderstanding about [autism]”. An ad by Autism Speaks that can be found on YouTube is then shared by Luterman, titled “I Am Autism”. It was released in 2009, but to this day it still has an impact on how people see autism. During its almost 4-minute running time, the commercial has a lot to say about “beating autism”. The first half of the commercial says autism “[works] faster than pediatric AIDS, cancer and diabetes combined”, states that it will “make sure that your marriage fails”, and that it will “fight to take away your hope”. The next half of the commercial is spent with families sharing that they will “spend every waking hour trying to weaken [autism]”, and saying “[they] don’t need sleep because [they] will not rest until [autism does]”. This sounds an awful lot like the phrase “kill the Indian, save the man”, which was coined by General Richard H. Pratt – the founder of the first residential school. Just like you can’t take the Indigenous out of the man, many autistic advocates strongly protest anything that separates themselves from autism – because without autism, they say that they wouldn’t be themselves. Luterman says that these ideas Autism Speaks once promoted “have defined and shaped autism in the public imagination”. In more recent times, Autism Speaks has continued to advertise harmful rhetoric similarly – such as when they decided to “promote a tool kit for parents of newly diagnosed children that, among other things, compares autism to leukemia”. This was only in 2019.
While a large portion of misinformation Autism Speaks has shared before is due to their negligence of autistics’ voices, part of the issue is the outdated research that is widespread in media and research – including the diagnostic process. One theme found within these outdated methods of research is a continuously prominent gender bias. In an article titled “Understanding the Gender Bias in Autism Research” written by Dana Roberson, based off of a podcast by Todd Zwilich, the gender bias is brought to light through thought-provoking points. In the article, Roberson shares that “since the disorder seems to appear more often in male subjects, the criteria for diagnosing ASD is almost entirely developed from the study of boys”. She also notes that studies say “boys are supposedly four times more likely to have the condition, but clinicians often miss or overlook symptoms in girls”. If this is true, it suggests that more research needs to be done on girls before anyone can prove that more boys are on the spectrum. The article also features Emily Brooks, an autistic queer and non-binary person, who expresses how they “fear that studying girls and boys separately not only ignores gender diversity, but perpetuates gender stereotypes”. Brooks says “There’s been a myth that autism only exists in boys, or that it’s biologically more common for boys and men to be autistic than girls and women. Some of the larger organizations kind of perpetuate this myth by having [campaigns] like ‘Light it up Blue’ with blue representing four times more boys than girls being on the spectrum.” This “Light it Up Blue” campaign Brooks speaks of was created by Autism Speaks itself, with boys on the spectrum in mind. This suggests that the gender bias in autism research has had years of impact on the way Autism Speaks has portrayed autism through their media avenues, especially since their logo was solid blue up until February 11th, 2020, according to Cassandra Crosman in her article “Is Autism Speaks Capable of Change?”. They decided to call 2020 their “year of kindness” when they changed their logo to be a pink-orange-blue gradient for the sake of diversity, but we have yet to see just how strong their determination to change their portrayal of autism is.
With the number of advocates in the autism community speaking on these issues, you’d hope that by now these age-old beliefs about autism would be debunked – or at the very least, silenced. There have been some forms of wins for autistics over the years, which have led to mainstream organizations being more open-minded about their portrayal of autism, and what they post on their social media. This doesn’t mean that the issues are gone – the years of harm caused by stigma, fear, and abusive methods are still in the minds of many. To this day, ripple effects are causing these misconceptions about autism to have a strong grip within the media. To better represent autistics, a more diverse perspective has to be adopted by everyone who contributes to the media. For this to be possible, there is one clear path that needs to be taken – everyone and anyone who wants to make a change must start listening to autistic voices – especially women, BIPOC and trans/non-binary autistics. Instead of watching movies with neurotypicals playing autistic people, there needs to be room for autistic actors to fulfill these roles – the way that “Everything’s Gonna Be Okay” did with their character Matilda, who was played by Kayla Cromer. (Read more about Kayla by clicking the link to “The Art of Autism” below.) Rather than listening to neurotypically-based autism organizations, people need to start listening to autism organizations who consult with autistics regularly, young or old, that take consideration into how women, BIPOC and trans/non-binary autistics are supported – a good example being the Autism Women & Nonbinary Network (AWN). (Find their website below.) When it comes to diagnostic manuals and research hubs on autism, there must be a path paved for marginalized autistics to be an integrate part of this process – such as the resource I am looking to, Dr. Natalie Engelbrecht, who is an autistic registered psychotherapist in Ontario. (Find her Embrace Autism diagnostic clinic below.)
When it comes to representing diverse populations in the media, the effort always needs to be done authentically and with proper research. Some may think that proper research entails reading among textbooks or official research online – as I outlined in this essay, though, things can go wrong quickly if the only focus is by-the-book methods (especially with out-of-date resources). The most effective way to accurately portray information about a specific demographic is directly through the demographic we are talking about. If someone is writing a book with Indigenous characters in it, they need to talk to Indigenous people. If someone is writing an article about black people and being anti-racist towards the black community, they need to talk to black people. This includes intersectionality – such as the example I gave of autistic women, BIPOC and trans/non-binary people, who do not get the same representation as cis white autistic males. Going directly to the source of the demographic you are covering breaks through any existing webs of misinformation or systemic oppression that may already exist, which is what paves the way for better representation of marginalized populations – a little bit at a time. In order to break cycles and be sure to accurately represent our marginalized communities moving forwards, we as a society must make sure we are listening to the people’s voices who matter the most.
Sources:
Luterman, S. (2020, February 20). Perspective | the biggest autism advocacy group is still failing too many autistic people. The Washington Post. Retrieved November 21, 2021, from The Washington Post Website.
Albert, O. (2021, February 26). Sia’s “Music” receives backlash from local and International Autism Community. The Lantern. Retrieved November 21, 2021, from The Lantern Website.
Mann, B. (2016). I Am Autism. YouTube copy. YouTube. Retrieved November 21, 2021, from this YouTube video.
Roberson, D. (2016, March 14). Understanding Gender Bias in Autism Research. The Takeaway. broadcast, WNYC Studios.
Crosman, C. (2020, February 24). Is autism speaks capable of change? In the Loop About Neurodiversity. Retrieved November 21, 2021, from the In The Loop About Neurodiversity Website.
Autism Advocacy Self-Directed Resources:
Sandison, R. (2021, September 4). An interview with Kayla Cromer, autistic actress on everything’s gonna be okay. The Art of Autism. Retrieved November 21, 2021, from The Art of Autism Wordpress Page.
Autistic women & nonbinary network (AWN). (2021). Retrieved November 21, 2021, from The AWN Network Website.
Engelbrecht, N. About me: Dr. Natalie Engelbrecht RP ND. Embrace Autism. (2021, August 27). Retrieved November 21, 2021, from the Embrace Autism Website.