OCTOBER 10, 2020
There is no “normal” style of human brain or human mind.
— Nick Walker, “Throw Away the Master’s Tools”
IN THE LATE ’80s, when my brain was making it clear that it had an independent operating system, there was little discussion of neurodiversity. I didn’t hear about Temple Grandin’s work until years later — the most common pop-culture reference was still Rain Man. As early as six years old, I’d frankly told my mother that my brain was “different,” but nobody was talking much about the autism spectrum at the time. I’d experienced a language delay, but then I started talking up a storm — under the right circumstances — so I didn’t seem to need the type of support that might have actually generated a diagnosis. I also grew up in a rural town, far away from the kind of specialists who would have noticed what was going on.
I was just … myself.
I kept most of my intense anxiety on the inside and tried to follow the confusing social rules that kept multiplying around me. Sometimes I’d melt down, but it was silent breakdown rather than anything more dramatic. I was fragile but functional. I built elaborate worlds and wrote epic stories. It didn’t occur to me that this was a form of survival.
The characters I related to were wizards and outsiders.
It wasn’t just that I wanted to possess the spell that would make sense of the world. There was also a wizardly way of thinking that I connected with — a certain feeling of marginality, even exile, though still infused with the power to change things. Wizards were, quite simply, weird. Merlin followed the rules of his own prophecy and didn’t give a toss about what various monarchs thought. Morgan le Fay seemed to have her own interior logic for doing things, and as an antagonist, she was much more fun to read about than boring knights. The period from the late ’80s to the early ’90s saw the rise of the epic fantasy novel, and most of these novels had enigmatic magic-users who didn’t seem to follow any social conventions. I needed to know: How did you go from being a farm boy to being someone who could alter the fabric of the universe? And when you were powerful enough, did people finally leave you alone?
I realize now that these wizards were some of my earliest kin on the spectrum. People who saw the world differently. People who refused to conform. They pulled back a curtain and said, Look how weird and wonderful the universe is. Sometimes they were attacked, but often they were met with uneasy respect. As an anxious 12-year-old who could barely exist in public, what I wanted more than anything was to inhabit these worlds forever. Like Merlin, I wanted to let someone draw a magic circle around me, cutting me off from the sensory chaos of daily life. To drift pleasantly in a grove, letting my magic simmer.
The last decade has seen greater representation of neurodiversity in popular culture, though more visibility doesn’t always mean better visibility. In those formative years, I mostly connected with characters like Data from Star Trek, or Odo the changeling from Deep Space Nine. Both were struggling to appear human in a world that often seemed uncomfortable sharing space with them. Later, in college, I empathized with Anya from Buffy the Vampire Slayer, an “ex-demon” whose problems negotiating society resonated with my own. After a central character dies in the show, Anya questions the nature of death, asking how she’s supposed to act — what anyone is supposed to do — when faced with it.
The first autistic character I really connected with was Abed Nadir, from Community. The representation was far from perfect. His love of fantasy was often used as a mere plot point, and there were several episodes that dehumanized him for lacking appropriate emotional responses. But ultimately, I think, Community presented him as multifaceted and lovable. The show’s creator, Dan Harmon, later admitted that he shared a lot in common with the character, though this didn’t change the fact that much of Abed’s behavior reads like something from the DSM. He avoids eye contact and often speaks in monologues about popular culture. He misinterprets social cues and is rarely tactful. In an early episode, we learn that Abed’s mother has left, and he is only able to articulate this loss by making a film about it. At the beginning of the second season, Jeff is irritated by Abed’s conflation of television with real life: he no longer finds it endearing, as do the other characters. Abed’s response is instructive: “I know the difference between TV and reality, Jeff. TV has structure, it makes sense, there are likable leading men. In real life, we have this. We have you.”
What I love about this response is how it short-circuits Jeff’s confidence in his own ability to diagnose the group. Abed’s anxiety isn’t that he can’t distinguish between reality and fantasy but rather that the gulf between the two is just so vast. Jeff is no leading man, and Abed is no poster child for neurodiversity. Both are flawed and human characters.
There are definitely more neurodivergent characters on TV in 2020, though only a few of these examples involve community consultation. The Netflix show Atypical has received both praise and criticism for its portrayal of Sam, the autistic lead character (played by a non-autistic actor). Like Abed, Sam is a constellation of Google-able symptoms. He can’t lie or make eye contact, doesn’t get sarcasm, and responds to stress by either running away or trying to harm himself. All of these behaviors are certainly plausible for someone on the spectrum, or someone who’s otherwise neuro-atypical, but you don’t necessarily see every one of them manifesting at the same time. The show is constantly trying to remind us how much Sam struggles with sociability and anxiety, and while this is certainly true for many — and could be a point of connection — it also suggests that being on the spectrum is a constant battle.
Sam’s family is always talking about how difficult he is, how much work it is just to be around him. When his sister Casey wants to enter a fancy prep school, she’s pressured to write about Sam’s autism — to make her application stand out. When Casey says it’s her job to look after Sam, the interviewer replies, “That must be hard for you.” She responds, “Sometimes it feels like Sam takes up so much space that everyone around him needs to be empty.” This is a common ableist view, not just of autism but of neurodiversity or disability in general — that disabled people are “taking up space.” And while the show does attempt to deconstruct this fallacy, Sam is still portrayed as a character who demands too much.
I’d suggest that this representation triggers a common fear within overlapping disabled and neurodivergent communities — the fear of being a burden. This is what abled society tells you, in order to avoid changing. The only scene with Sam that I ever really connected with was a moment where he’s hiding in the science lab. He sits under a desk, knees drawn up to his chest, wearing noise-canceling headphones. Aside from the headphones, that was pretty much my experience of middle school.
Josh Thomas’s recent series Everything’s Gonna Be Okay, which runs on Disney’s Freeform channel, features a more nuanced portrayal of an autistic character. Matilda is Sam’s age, but she’s more successful at making friends and forming community. Kayla Cromer, the actress who portrays Matilda, is also on the spectrum, and she has helped shape her character’s story line. In an interview with Refinery29, Cromer talks about coming out as autistic and the significance of her character:
I realized that so many actors out there that have a disability or have autism are desperately trying to even get in the audition or get an agent or just simply get a meeting with an agent and by me doing this, me being the first actor to have autism in a leading role in a TV series playing an autistic character, that could really break through the stigma attached to disability in entertainment.
The show takes a timeworn concept — an older brother assuming guardianship of his orphaned younger siblings, à la Party of Five — and digs into the complexity of family and kinship. Matilda’s flighty but kind brother, Nicholas, is uncertain how much guidance she needs as a high school student on the spectrum. Matilda wants to be independent, and the show lets her, even as it explores the difficulties involved in the process. In a particularly fine scene, Matilda and her girlfriend Drea discuss how they both want to be touched. Drea teaches Matilda how to apply the kind of pressure that makes her feel okay, and both characters are presented as autistic women who have different perspectives and experiences of the world.
In the third episode of season one, Matilda wants to get drunk, in order to prepare for future college parties. Nicholas and his boyfriend, Alex, take care of her while she chugs a bottle of peach schnapps (neither can agree on whether they should dissuade her or not, since the show is concerned with Matilda’s autonomy). Sitting on the floor, Matilda is able to have a meltdown under controlled circumstances, within the safety of Nicholas’s bedroom, and she proceeds to give voice to her own uncertainty as someone trying to navigate neurotypical society: “I thought it would be okay, because I’m way more adaptive than other people with autism. But recently I just don’t understand what I’m. […] [I] just don’t understand. What’s being a teenager? What’s autism? What’s dad dying?”
She interrupts her dialogue to vomit — having achieved her goal of getting wasted. Autistic representation in pop culture has skewed toward men — particularly brainy male characters — but Matilda’s character emerges as a significant representation of a queer woman on the spectrum. As a composer, her background in the arts reveals that people on the spectrum don’t have to be acerbic physicists (like Sheldon Cooper on The Big Bang Theory) or doctors with miraculous diagnostic powers (like Shaun Murphy on The Good Doctor).
In the finale of season one, the family takes a trip to New York so that Matilda can prepare to enter Julliard. Her trial-by-fire experience of riding the subway reminded me of my own mishaps while living in New York. I also struggled with the sensory nightmares of the city. Matilda makes a pilgrimage to St. Bartholomew’s Church, where one of her idols — autistic composer Amy Beach — once performed. Whereas Atypical often portrays Sam as isolated, Everything’s Gonna Be Okay sketches out an arc of autistic creativity going back to the 19th century, in order to create a community for Matilda.
Neurodivergent representation in YA literature has also improved over the last decade, with more #ownvoices stories appearing. I’ll discuss three recent books: Rainbow Rowell’s Carry On (2015), Rachael Lucas’s The State of Grace (2017), and Jen Wilde’s Queens of Geek (2017). All three feature characters who are either on the spectrum or neuro-atypical. Wilde and Lucas have both come out as being on the spectrum, and their central characters are openly autistic.
Rowell’s character Simon Snow is neurodivergent in an unspecified way, and I don’t know what Rowell’s own experience is — though Simon’s perspective definitely resonates with my own in some ways. Like Harry Potter, Simon is an orphaned wizard, attending a hidden magic school. Rowell deconstructs Hogwarts in Carry On by crafting a story that reflects 21st-century diversity in the United Kingdom. Simon is queer and in a stormy relationship with the vampire Baz. Their friend, Penelope, is a South Asian woman dealing with systemic racism in Watford School. Simon’s mentor, known only as The Mage, turns out to be a failed revolutionary who’ll do anything to consolidate his power over the school. Simon struggles with the language-based magic in the book, partly due to his own personal struggles with communication: “None of it comes naturally to me. Words. Language. Speaking. I don’t remember when I learned to talk, but I know they tried to send me to specialists. Apparently, that can happen to kids in care, or kids with parents who never talk to them.”
Simon’s social anxiety, his awkward silences, become a guiding force throughout the novel. Though he’s not explicitly on the spectrum, I think it’s fair to read him as someone with a neuroqueer perspective. In her 2018 book Autistic Disturbances: Theorizing Autism Poetics from the DSM to Robinson Crusoe, Julia Miele Rodas notes that the term neuroqueer “gestures toward a cultural history shared by neurodivergent and queer peoples,” and “reclaims identity from clinical and popular arenas.” It encompasses the unique rhetorical and cognitive practices of people on a broad spectrum of neuro-atypicality. Rowell’s enormously popular book manages to give us a queer and neuro-atypical wizard who saves the world and tells his own story.
Wilde’s Queens of Geek focuses on two teens negotiating a convention space: Taylor is on the spectrum, and highly invested in medievalist fandom, while Charlie is secretly bisexual and promoting her first movie. I definitely related to Taylor’s struggle to navigate the sensory overload of a packed convention. When I attended the Chicago Comic & Entertainment Expo as part of a panel on feminist representation in pop culture, I had a number of minor meltdowns while negotiating the frenetic marketplace area known as The Block. There were endless food kiosks with competing smells, medievalist blacksmiths forging replicas of swords from Game of Thrones, discordant music, brilliant costumes, and a constant buzz of activity. I saw a mother and daughter carrying a TARDIS, Batman taking out his contacts in the bathroom, and a whole army of Deadpools wandering around with their Instagram handles on hand-drawn signs. It was a lot.
In the first few pages of Wilde’s novel, Taylor describes this feeling of being overwhelmed. “My shoulders tense and my palms start to get clammy. The thought of spending the next three days in lines with hundreds of people makes me break into a nervous sweat.” She feels most comfortable within her own online fandom, talking about how this safe space contrasts with her experience of the world:
Sometimes I see people at the supermarket or somewhere else mundane, smiling and cheerfully making small talk with strangers and not looking tense or uncomfortable at all, and I just want to go up and ask them how they do it. How do they manage to do everything they need to do and go out in the world and be human without feeling the weight of it all crushing them into oblivion?
One of the most significant moments in the novel occurs when Taylor meets Josie, a graphic novelist who is also on the spectrum. Josie asks, “Are you an Aspie girl, too?” Taylor replies, “Yes. I’ve never met another Aspie girl before. … I mean, that I know of. I guess I probably have, just not another girl who knew she was on the spectrum.” A scene featuring two women on the spectrum, interacting in fiction, is so rare that Everything’s Gonna Be Okay is one of the only other examples I can think of. In this moment, Taylor sees herself reflected in another person for the first time. It’s overwhelming. They both tumble through the conversation, and Taylor reiterates how often she feels weak in the real world. Josie’s response is succinct and instructive:
You are not weak. People like us, we’re brave. We’re the ones who get up and face our worst fears every day. We keep fighting. […] [Things] that most people consider to be normal, daily parts of life are the very things we fear and struggle with the most, and yet here we are, moving forward anyway.
This mirrors the earlier exchange between Matilda and Nicholas on Everything’s Gonna Be Okay, where we see Matilda’s independence warring with the very real struggles of navigating an overwhelmingly ableist society. In her review of the book for the Disability in Kidlit website, writer and autism activist Kim Broomall states that the novel “fully shows the humanity of one autistic/anxious girl, never painting her as either representative of her disabilities or trapped by them.” I included Queens of Geek in a creative writing class, and a number of students connected with Taylor’s anxiety, her environmental sensitivity, and her love of fantasy culture.
In The State of Grace, Rachael Lucas presents a character who, I’d argue, is somewhere between Matilda and Taylor. Grace isn’t quite as confident as Matilda, and she struggles a bit more with sensitivity and social interactions; at the same time, she’s slightly more adventurous than Taylor (particularly when she begins dating Gabe, who has ADHD). In her review of the book, Elizabeth Bartmess notes, “I appreciated [this] being portrayed here […] [since] it’s common for us to become friends with other neurodivergent people,” But she also criticizes “Grace’s lack of connection with other autistic people. […] [She] doesn’t seem to access any online resources or read any materials by or for autistic people.” Like Taylor, Grace is mostly an introvert who feels more comfortable around horses than people (same). She talks about the various ways people discuss her autistic identity as if she isn’t even there — an experience I also share:
[People] tell me what they think I feel because they’ve read it in books, or they say incredible things like “autistic people have no sense of humor or imagination or empathy” when I’m standing right there beside them (and one day I’m going to point out that that is more than a little bit rude, not to mention Not Even True) or they — even worse — talk to me like I’m about five, and can’t understand.
This is a common thread in all of these stories about women on the spectrum: the experience of having people speak for you. In her delightfully titled memoir, I Overcame my Autism and All I Got Was This Lousy Anxiety Disorder (2020), Sarah Kurchak describes the feeling of having to come out as autistic over and over again. At the same time, each instance of coming out is contested, whether by well-meaning friends, medical authorities, or simply strangers who think they know better:
I spent twenty-seven years trying to convince people that I was normal enough to leave alone, and no one ever fully bought it. When I finally knew why that experiment was such an ongoing failure, though, few believed that either. […] [They thought] I was faking. I was not as autistic as someone else someone knew and was, therefore, not really autistic.
I’ve had many similar coming-out experiences, both as a queer (and gender-queer) person and as someone on the spectrum. Saying I’m on the spectrum inevitably leads to a conversation about diagnosis and “functionality” and the work of Autism Speaks (an organization that has always been based on our erasure, in spite of their more recent marketing). It’s significant that Grace struggles with self-representation as well, and one of the hallmarks of her relationship with Gabe is that they listen to each other. When taken together, the stories of Grace, Matilda, and Taylor provide a vital alternative to texts that speak for us, rather than with us.
I’ve been very lucky as someone on the spectrum — I have a great job as a professor that allows me to focus on my own interests. I have the security to advocate for disabled and neurodivergent students, and I’m out at work, both as queer and as neurodivergent. But I still could have used books like these when I was growing up. How lovely would it have been to see Matilda or Simon in a queer relationship? A character like Grace could have shown me that I was going to meet people like me eventually — that I should progress at my own pace. Pop-culture representation has improved, but there still aren’t enough stories that engage closely with disabled and neurodivergent communities.
This absence derives from the ableist assumption that autistic people can’t tell their own stories — that our lives are profoundly un-rhetorical because we communicate differently. In her 2018 book Authoring Autism: On Rhetoric and Neurological Queerness, Melanie Yergeau challenges this assumption by calling for different styles of communication. She says that we need “autistic people’s cunning expertise in rhetorical landscapes that would otherwise render us inhuman,” and she demands a queerer rhetoric: “I want a rhetoric that tics, a rhetoric that stims […] [a] rhetoric that averts eye contact.” All of these stories present diverse modes of speaking, living, and loving, and we still need more — much more, and especially more books that deal with BIPOC characters on the spectrum. ChrisTiana ObeySumner criticizes the lack of autistic narratives for Black and femme people: “I feel left out, alone, erased from the sociopolitical discourses of what it means to be autistic/disabled. […] [Autism] doesn’t occur in a vacuum and neither do any aspects of our intersectionality.” Autistic people of color are far more likely to be on the receiving end of police violence, as well as the daily effects of racialized ableism.
More neurodivergent writers are telling their stories, and we need to ensure that these representations come from lived experience and community consultation, not just from a writer’s room passing around the same Wikipedia article. We also need more stories about people who communicate through adaptive technology, signing, or other means, because there shouldn’t be a hierarchy of traditional speaking practices (the ABC TV show Speechless explores this). I’m inspired by my queer and neurodivergent students who claim their identities and advocate for themselves. I’m hopeful when I see new YA books making these connections. We need more imperfect rhetorics, where readers find themselves reflected and know that the way they see the world is true.
Jes Battis (he/they) teaches literature and creative writing at the University of Regina, and is the author of the Occult Special Investigator series and the Parallel Parks series (both published by Ace/Penguin).