Why Are There So Few Women With Autism On TV?
Netflix's new show, Atypical, is getting a lot of attention due to its subject matter: a young man with autism spectrum disorder and his search for love. This is, unfortunately a fairly uncommon topic for television to cover — but despite the fact that it does break ground in its plot, the show's representation doesn't. Atypical's central character, Sam, played by Keir Gilchrist, is white, male, and heterosexual, like vast majority of characters in film and TV with autism spectrum disorder (the DSM-5 categorizes symptoms that would have previously been diagnosed as Asperger’s syndrome or Autistic Disorder now as part of the larger category of ASD).
Though ASD has long been thought of as a "male" disorder, recent research has suggested that current diagnostic criteria misses many women, who manifest the disorder differently; this is why women are more likely than men to be diagnosed with ASD later in life. All in all, researchers now believe that that there are far more women living with ASD than previously thought.
This sounds like it would provide a great dramatic challenge for film directors or TV showrunners to tackle — so why do so few of them choose to take it? Why are there so few women with ASD onscreen — and what does that lack of representation do to actual women with ASD?
Shows Are Hesitant To Label Women With ASD
Women with ASD who seek representations of themselves in entertainment often must deal with characters who seem like they might have the disorder, but are rarely out-and-out visible.
A handful of female characters have been openly identified as having ASD, including the recurring character of Fiona Helbron on Sherlock Holmes update Elementary, the supporting character Isadora Smackle on Disney's tween sitcom Girl Meets World, and Sesame Street's newly introduced puppet Julia. But more often, when female characters seem to exhibit many traits of ASD — like Lisbeth Salander, heroine of Girl With The Dragon Tattoo and the rest of the Millennium book and film series — they're not remarked upon as such. Many creators are also reluctant to label them (Girl author Stieg Larsson went on record that Salander does not have ASD).
Dr. Temperance "Bones" Brennan, the main character in the crime series Bones, is occasionally cited as a character with ASD, but that wasn't explicitly addressed in the show's extremely long run, and staff on the show shied away from identifying her as such; Emily Deschanel, who played Brennan, described the character as "almost [having] Asperger's" and show creator Hart Hanson once noted "If we were on cable, we would have said from the beginning that Brennan has Asperger’s...Instead, it being a network, we decided not to label a main character, for good or for bad. But those elements are in there."
Even when actors are more outspoken about their beliefs that their character has ASD, the scripts don't always follow suit; the Danish television show Bron (The Bridge) stars a female detective, Saga Noren, whose ASD has been regularly confirmed in interviews by the actor playing her, Sofia Helin. But, notably, that diagnosis is never actually mentioned onscreen.
This all has a greater impact than just failing to reflect reality; it short-changes girls with ASD in real life. "Some of the biggest leaps forward in public understanding of autism have happened because of films, books and TV shows," Tom Purser of the National Autistic Society tells Bustle. "But too few portrayals of autistic people have reflected the diversity of the spectrum and the experiences of different people, including women and girls."
ASD Symptoms Are Different In Girls — And That Matters
ASD is widely seen as a more "male" condition, but Purser explained to Bustle that there's a severe lack of hard evidence to back up that idea. "Various studies, together with anecdotal evidence, have come up with male/female ratios ranging from 2:1 to 16:1," he notes. However, there are some complicating factors. We're increasingly discovering that ASD symptoms are often different among women, and that's an issue, as much ASD research has focused purely on men — which might mean that diagnostic criteria are leaving out girls who "don't fit" the model.
This isn't a new discovery. A report in the ASD journal Spectrum in 2015 noted that girls are often diagnosed much later than boys, and also highlighted the fact that the genetics of ASD in males and females appear to be fundamentally different. And a new study published this year, involving 79 girls and 158 boys who fit current ASD criteria, showed that the reality of girls with ASD doesn't line up with our stereotypes — the researchers found that the girls in the study had a more difficult time with certain aspects of day-to-day functioning than the boys in the study. The lead scientist commented in a press release that this was "surprising", because "in general, girls with ASD have better social and communication skills during direct assessments. The natural assumption would be that those communication and social skills would assist them to function more effectively in the world, but we found that this isn't always the case."
This study points to a real issue that women with ASD struggle with — since so much research is male-focused, their symptoms are often defined in relation to men, rather than taken on their own. When it comes to diagnosing and understanding ASD, Scientific American commented in 2016 that modern science's methods "are based on data derived almost entirely from studies of boys." Girls with ASD don't always fit the stereotypes we've developed looking at men; for instance, they are are more likely than men to have the same interests as their friends and are less likely to have the repetitive behaviors, known as "stimming," which are often seen as a key characteristic of ASD. Because so little research has been done, teachers and medical professionals are missing symptoms, which can delay diagnosis for years.
That is, if they are diagnosed at all. "I have been referred to so many therapists I have lost count," Florence Leslie wrote in the Huffington Post. "Waved away as hormonal. Tested for diabetes. Prescribed iron tablets. Precautions save lives, but the profile of Autism needs to change to prevent women slipping through the diagnostic net." One woman in her fifties recalled to the Huffington Post UK that she had her tonsils taken out because her doctors believed that would stop her ASD symptoms.
Alice, a student in her 20s, tells Bustle that her diagnosis was difficult in part because of gender problems in ASD studies. "General ableism and male bias in things like diagnostic criteria and non-fiction books about autism," she said, "contributed in large part to why I rejected my diagnosis and didn't reclaim it until a couple of years ago. This was detrimental to me because I wasn't accessing accommodations available to autistic students." But her story, like many others, also shows how representation — or the lack thereof — can seriously impact young women with ASD.
Why Representation Is So Important
A lack of media representations of women with ASD can have very real consequences; it can make women with ASD less likely to seek out or accept a diagnosis. Alice tells us that part of her rejection of her diagnosis was fueled by reading Mark Haddon's : The Curious Incident Of The Dog In The Nighttime, the novel-turned-play that is one of the most famous narratives around ASD.
"I wasn't aware of any female autistic fictional characters at all until I was maybe 18," she tells Bustle. "My mum bought me a copy of The Curious Incident of the Dog in the Nighttime when I was 13-ish because it was pretty much the only fiction with an autistic character around. I couldn't relate to it at all. It's about a boy who is very into maths and doesn't understand figurative language, and as a girl who was very into humanities and poetry I couldn't exactly relate."
Headmaster Sarah Wild of Limpsfield Grange, a British school focused on girls with ASD, tells Bustle that "I think autistic women and girls would certainly benefit from having positive role models, fictional or otherwise, in the public eye, and that this would certainly improve awareness and probably diagnosis rates for this under-represented group."
Representation isn't just important so that parents, medical professionals, or women with ASD themselves can understand more about how the disorder impacts women; realistic depictions of women with ASD can give us role models. When Bones ended in early 2017, Jennifer Malia, who was diagnosed as having ASD in her late 30s, wrote in Glamour, "Like Bones, I too am becoming more flexible in my views, seeing the world without relying only on logic. I’m also learning how to be more comfortable in my social environment by making more of an effort to initiate conversations...But now that Bones is ending, television needs more role models like her. In order to destigmatize autism, we need to see women who are on the spectrum, especially those who unknowingly hid their autism, as I did."
Unfortunately, when representation does occur, is still often quite narrow. Women with ASD on TV are almost always shown as white, financially secure, and science-oriented — stereotypes that fail to reflect the true diversity of women with ASD. "I thought Lisbeth Salander in the Millennium trilogy was pretty decent and she was really the first example of female autistic representation I encountered. I also enjoyed Fiona in the series Elementary," Alice tells Bustle. But, she notes, both characters have their limits. "Both these women are hackers, which is a huge and somewhat irritating stereotype in autistic representation (regardless of gender). I would like to see more representation of autistic women who work outside of STEM/tech, and also of non-white autistic women."
Just 16 percent of people with ASD and their families, the National Autistic Society tells Bustle, feel that the public understands ASD in a meaningful way. The dearth of female representation is part of that problem — and it won't change until TV realizes not just that stories of women with ASD are worth telling, but that women with ASD should be telling them themselves. "Fundamentally," Alice said, "I think the situation will improve when autistic women are actually consulted, or even better, at the forefront of efforts at representation. I think when that happens we will see a greater plurality of representation."