It's April, Autism Acceptance Month! Evelyn Hendrix, children's writer and Vermont College of Fine Arts MFA candidate, interviewed children's author Sally J. Pla recently about her thoughts on the current state of autism representation in children's literature. Here's their edited exchange.
Q: What did you read as a child? Did you see yourself in stories?
I saw parts of me here and there. The hesitance of Beezus Quimby, the anxious, go-along submissiveness of Piglet. I was an undiagnosed autistic girl coming of age in the '70s, and to be honest, I was more interested in characters who weren't like me -- ones who could teach me things. Like how to interact with others, how to survive, be independent, capable. Books weren't a mirror for me, so much as a feeling that I was the mirror, trying to reflect back and mimic qualities of literary characters I wanted to be like. I needed maps more than mirrors - instruction manuals on how to navigate the world. How to interact with people!
We didn't have very many kids' books at my house growing up, but we did have a set of Dickens, and I read them all, even though they were crumbly and old. I rooted for Pip and Oliver and cried over Sydney Carton. And, I discovered that "Victorian waif" isn't the best social persona to model yourself on, if you're looking to make friends in middle school, haha.
Since most of the books in my home starred boys, and also because I had a brother I idolized -- and also because it was the '70s -- and also, I guess, because autistic people can tend to be more flexibly gendered -- I assumed I was a boy. Boys moved in the world actively and decisively. They were the ones in charge. Why would anyone decide to be anything else?
Q: Do you think it's important for stories to be written by #ownvoices authors? Or do you believe others can realistically portray the struggles of a child with ASD?
It's tremendously important for there to be diverse #ownvoices stories in the world. The experience of autism is massively varied. We need lots and lots of different stories. As for #ownvoices: It's not that I think autistic adults are the only ones who should write autistic stories -- but one must admit, it will just be a bit harder for a neurotypical writer to capture some of those intimate nuances.
Beyond all that, autistic/neurodivergent/disabled kids need #ownvoices stories, because they need adult IRL role models. Young autistic readers need to see autistic adult writers out there, sharing their truth and leading productive, creative adult lives. Because then, they know that could happen for them, too. They, too, might grow up to work at something they love, and have success at it. This is no small thing for a young autistic person to know. (Their current rates of employment are pretty abysmal.)
Of course, non-#ownvoices writers -- with research, compassion, study, observation, interviews, sensitivity readers -- can certainly create characters with realistic nuance and accuracy. But they must be very, very careful to look deeper than a flat surface reflection -- and that doesn't happen often enough.
Non-autistic and autistic writers alike must also be extra mindful of audience -- of who will be reading. Are they crafting an autistic character with young autistic readers in mind? Or are they only thinking about their mainstream readers? There is a big difference, here, and it can lead to "othering."
Here is another thing I worry about. May I respectfully point out that this interview question was phrased as: "Can other (NT) writers realistically portray the "struggles of a child with ASD?"[emphasis mine]. Why only ask about"struggles?" Why not ask whether we can realistically portray the humor, the originality of thought, the talents, the honesty, the empathy, the sometimes exquisite sensitivity, the generosity, -- all the exceptional, beautiful qualities and uniqueness -- yes, and the challenges -- innate in our diverse and fascinating and important neurodivergent children? Their lives -- and their literature -- shouldn't be only about the struggles.
Q: In the past five years, the number of books featuring characters who have ASD has increased. Why do you think this is the case? How have they changed since stories written ten or twenty years ago?
I think the number of stories has kept pace with the increase in awareness, since we're now diagnosing so many more cases, due to the broadening of the diagnostic criteria in the DSM-V back in 2013. It's not an epidemic of autism. It's a vast and positive increase in identification and awareness. (Diagnoses are still missing far too many girls, but that's another post for another day.)
Add in other neurodivergences such as ADHD, OCD, Tourettes, dyslexia, learning disorders, anxiety - and teachers can assume there's at least one neurodivergent kid in pretty much every single class - probably several. This is good news, as long as identification leads to accommodation. So long as diagnosed kids are getting the help they need and to which they're legally entitled.
Sometimes the help they need is just a matter of small but important tweaks. For instance, if my fourth grade teacher had written down assignments, visually, on the board? Instead of yelling them out over a noisy classroom? This one small accommodation would have dramatically improved my academic outcome.
What's also good news, these days, in terms of kid lit, is that stories are starting to shift away from tales "ABOUT" the "struggle" of autism -- those pathologizing or diagnostic or 'othering' types of stories -- to newer, better stories about autistic kids just out there in the world living their lives and having some amazing adventures.
Because, you know, they are first and foremost kids.
Q: Can you think of any books that did not present an authentic view of these characters? Or perhaps examples of how not to write about them?
As for critiquing particular books --- well, I'm troubled about representation even in some books that are award-winners. I will say, though, that the more recent the pub date, the better the odds that the representation is fair, genuine, and enlightened. There are of course exceptions. The book reviews on the wonderful, excellent site, disabilityinkidlit.com, had some great things to say in their reviews, and I'd refer readers to their archives.
In terms of what not to do while writing: It's just my opinion, but here are some tropes to avoid.
1. The Long-Suffering Sibling. "Because [X] must care for her difficult autistic sibling [Y], her chances to [succeed in life] are imperiled."
2. The Afflicted Main Character. "I am X. I have autism (instead of "am autistic," the phrasing most autistic people prefer, and an immediate red flag)."This means I struggle with [laundry-list of problems and symptoms that last throughout the story]."
3. The Stereotypical Sidekick. "I'm a quirky geeky literal-minded gamer pal who fumbles every social interaction, and I exist to help the author appear diversity-minded, while allowing opportunities to throw in some ableist humor!"
4. The Neurotypical Savior. A "normal" kid develops a wellspring of compassion and grows/comes-of-age, thanks to his newfound friendship with an autistic/otherwise disabled kid, whom he's helped or championed. (In other words, disability-porn.)
5. The Victory of Normal. An autistic/disabled character "overcomes" their "struggles" by becoming more "normal-seeming" or mainstream-acceptable at the story's end. (This is the opposite of acceptance. Its lesson is that a disabled or autistic child is only valuable if they are "fixed" according to someone else's definition of how to be a human.)
Stories and books can spark tremendously important discussions in classrooms and in families. Speaking about a fictional character's dilemmas and fictional mental health struggles allows many of us a "safe" distance and good entryway into speaking about our own feelings, struggles, challenges, and identities. This is one of the biggest reasons we started A Novel Mind. To help connect young readers with the stories they need, to feel less alone in the world.
5. How important are peers and family members in the support of children with ASD?
Family/school/peer support can be the difference between success and failure in LIFE. The difference between growing resilience, or downward-spiraling into despair and zero self-esteem. Autistic kids can go far, with the right supports. I worked in a school district in special-ed advocacy for years, so I really know this firsthand! They can really grow into themselves -- at their own speed.
I've known and loved so many autistic kids that just needed extra time to hit their marks. We are all on different journeys, tracks, and timelines. There is no one right way to be a human being! New abilities and aptitudes can appear anytime in neurodivergent kids. Let's stay open and celebrate what we can about the journey, and never ever judge.
6. What kind of feedback do you get from your readers?
Parents and grandparents contact me regularly, saying my stories or interviews have helped them recognize or understand their child/grandchild. That means everything. From young readers, I receive drawings and facts about birds from The Someday Birds readers, drawings of superheroes from readers of Stanley Will Probably Be Fine... I write and speak about overcoming fears, and sometimes kids get very personal and honest -- because I do, too. Middle and high school students have confided in me about family incarceration, poverty, and being a refugee. Some kids email me about feeling different, or about wanting to write. I have a few steady penpals. I always write back. It's such a sacred honor and a deep responsibility. I always tell them their voice matters, their stories matter. The good, amazing humans they are striving to become? That's what matters more than anything.
In addition to being an advocate for neurodiversity and autism acceptance, Sally J. Pla is the critically acclaimed award-winning #ownvoices author of The Someday Birds and Stanley Will Probably Be Fine, and the picture book Benji, The Bad Day, And Me, all of which feature neurodivergent kids. She's also co-founder and editor of A Novel Mind. Find lots more about her via https://linktr.ee/SallyJPla, or follow her on Twitter @sallyjpla.