Neurodiversity and the Business of Writing, Part 1: #OwnVoices and Neurodiversity

by Matthew Broberg-Moffitt

 

If you are a writer and an avid Twitter user, you may be familiar with the term #OwnVoices and pitch events such as #PitMad and #DVPit. There is some measure of controversy in the writing community regarding the use of the #OwnVoices qualifier. The term was originally coined by writer Corinne Duyvis, and it denotes that a person from an underrepresented background is writing characters from a similar shared experience (as opposed to writing characters with a different background than what they know personally). 

One of the issues of controversy is that editors and literary agents have placed a public cry for more stories that fall within this spectrum, asking for writers to self-identify that they hail from such a background and disclose which applies.

Recently a great deal of attention has been placed on a specific group of marginalized individuals: the neuro-diverse (ND). ND is defined as having a brain that is wired differently from the neuro-typical (NT) experience. Under the umbrella of ND, you can find the following, such as Autism, ADHD, OCD, giftedness, Learning Disabilities, Synesthesia, and Tourette Syndrome, among others. 

Readers may ask, why is it so important that ND creators make content with ND characters? Well, take a look at popular media that features the neuro-diverse that isn’t #OwnVoices.

An infamous recent example is Music (2021 film), co-written and directed by singer-songwriter Sia. The film features a non-speaking Autistic main character named Music (played by Maddie Ziegler) and centers on events in her life, how she is treated by her community. The role is portrayed by a neuro-typical actor, and Autistic individuals weren’t consulted in writing the screenplay. Teo Bugbee with The New York Times said, “The pop star Sia’s feature directorial debut, about an autistic teenager, at times seems indistinguishable from mockery.” The most significant criticism from the Autistic community regards the use of restraints, which is condemned due to the psychological and potential physical trauma, or even death, that can result from the practice.

One trend in books is for a character to be “coded” as Autistic, that is, displaying qualities or traits of Autism without the word explicitly being said. At times, it can seem like the word Autism is treated like the word “zombies” in George Romero films. This can feel like “queerbaiting,” the marketing strategy of giving the impression that a character is non-heteronormative but never actually portraying them in the hinted relationships, for ND readers. 

The overall absence of ND main characters that are openly labeled as Autistic is at times distressing in and of itself. When Finding S.A.M. (a middle grade novel about a boy dealing with the “burden” of having an Autistic brother, initially slated for publishing by One Elm Books in spring 2021) came into the public eye on Twitter  in November 2020, the danger of harmful representation came to light. It was not written by an ND author. Early readers found significant and hurtful issues with the language and reactions within the story in treatment of the Autistic character. The outcry from the Autistic community was so fierce that the publisher pulled the book.

An example that is most often cited as “good representation” is the classic film Rain Man (1988), about an Autistic “savant” (played by Dustin Hoffman) and his brother (played by Tom Cruise). While the movie did bring Autism into focus, it also reinforced and deeply entrenched a stereotype about how Autistic people present to others. That perspective continues to impede diagnosis in non-white, non-cis, non-male, non-heteronormative individuals today.

Popular television series such as Atypical, The Good Doctor, and The Big Bang Theory create a very narrow definition of how ND looks. And in each of these instances, the media and messaging is largely created by NT writers and portrayed by NT actors. This narrow definition of neurodiversity from the perspective of NT people denies ND people a chance to see themselves authentically represented.

When NT writers co-opt stories about the ND, and NT industry professionals fail to give ND stories written by ND creators the chance to shine, we’ve lost another opportunity to reframe the narrative to something by us and for us. When those professionals fail to put their money and marketing behind intellectual property that is authentic and empowering, more is done than perpetuating stereotypes and making the world a much smaller-seeming place. For example, if you demonstrate that restraints are common and encouraged with Autistic folk, you are potentially putting lives at risk. If you push the joke that “everyone has a little OCD,” you make it harder for people with OCD to receive accommodations when they need them. When NT writers turn us into a punchline, we just get punched. 

As was seen with Finding S.A.M., the reader does have the power to create change within the industry. Demand diverse books, support ND creators, buy their work when it is available, do so openly and proudly, and the publishing industry will follow suit. ND creators getting their art and vision into the public eye is a de facto solution. Yet, there are still significant barriers to publishing that are unique to the ND experience that will be discussed in the next part of this series, and both solutions and how to measure progress will be explored in a third installment. 

 

Part 2: ND Difficulties in the Business of Publishing

Part 3: Potential Solutions and Measuring Progress

 

Matthew Broberg-Moffitt is a writer of kidlit and non-fiction, with bylines in Thinknum Media. He contracts as a Sensitivity and Expert Reader with Salt and Sage Books. The majority of his projects are inspired by his experiences in life with homelessness, Autism, and chronic rare illness. He’s a classically trained chef, former substance abuse counselor, erstwhile computer repair tech, and one-time Buddhist monk. His fiction projects are represented by Hannah VanVels with Belcastro Agency. His non-fiction projects are represented by Heather Cashman with Storm Literary Agency.

Matthew has a son in college, and frequently hears, “How do you have a child that’s college age?” He is surrounded by a number of cats that don’t belong to him, but try telling them that. His hobby is collecting hobbies. He currently lives in Oklahoma City, OK.

16 Responses

  1. Susan Forest

    Thanks for this–I found it very interesting. I have three children with ADHD and learning disabilities (which often go hand-in-hand), and all three present differently. However, my one daughter in particular, is virtually time-blind (partially related to the ADHD-typical shifts in her circadian clock). This has caused her immense difficulty, trying to fit like a square peg into a round hole. She has become extremely anxious about time and has struggled mightily with everything from finding and keeping a job to social teasing. As an artist, she focusses her practice on invisible disabilities. Because, of course, everyone just thinks she’s lazy.

    1. Matthew Broberg-Moffitt

      Thank you for your comment, Susan. As the world becomes more aware and accepting of ND, there will hopefully be a shift in conditions that facilitate the success of all people, NT and ND alike. Moving to a more flexible remote, work-from-home environment would be helpful to lots of folks.

  2. Steve McGrew

    This made me think of the Isaac Asimov story Sucker Bait, with an autistic main character decades before anyone knew of autism. I’m on the spectrum.

    1. Matthew Broberg-Moffitt

      Thank you, Steve. I somehow missed reading that novella and it’s been added to my TBR list.

  3. Alicia Butcher Ehrhardt

    Excellent post – and it is SO important to have ND individuals in all stages (‘nothing about us without us’ fits this, too) of a production.

    Otherwise, they get it so wrong it’s offensive to anyone who actually knows about this diversity.

    Without people writing what they experience personally, the detail is lost. Other people may learn (well or not), but can’t really experience what THEY are not wired for.

    Looking forward to the next posts.

    1. Matthew Broberg-Moffitt

      Thank you so much, Alicia! Those are fantastic points. ‘Nothing about us without us,’ isn’t just a clever slogan.

    2. Kiya Nicoll

      To reinforce this ‘all stages of the process thing’, I can’t help but feel that the double empathy problem is *huge* when selling autistic (possibly neurodiverse in general, but I’m mostly familiar with this issue from the autistic community) work.

      For those who aren’t aware of the double empathy problem: there is a false characterisation of autistic folks as unempathetic and emotionless that is all over the literature and conversations and assumptions about us, but it comes down to “Y’all find it as hard to read and understand us as we do to read and understand you, this isn’t *our* deficiency, it’s a two-way communication problem”. It’s not that we’re automata; it’s that we’re *different* in ways that allistics find difficult to bridge and rarely bother to think about.

      So the problem with selling a “Maybe this isn’t for you” story that marginalized communities have in general with presenting own voices work is compounded by this gap, and I have the impression from discussions in the ND writing community that autistic pacing and characterisation often seem opaque to allistic acquiring editors.

  4. Marie

    Thank you Matthew for taking the time to patiently explain how so many of us are getting it wrong. You’ve helped me and opened my eyes to something I had not considered and I will hopefully be more respectful and considerate in my future writing.

  5. Carolyn Gold

    Thank for this excellent piece! Serendipity is one of my favorite words and so, I found you …
    My husband ND/gifted child/inventor, etc. wrote a manuscript for a book, a few years ago, before we met. Now we are co-authors of what we have turned into a new series of episodic novellas. It focuses on the many gifts ND teens have to offer. The protagonist makes her dislike of labels very clear at the very beginning of the first chapter, none are used to describe anyone. The reader gets to experience characters for who they are and what they have to offer the world — as it should be. One could say a Utopian subtext within a semi Dystopian plot. My husband didn’t realize he was writing about ND kids, because he’s just discovering that there are many that think and perceive and function like he does, he’s thrilled and excited. He simply tapped into something incredible during a very difficult time and he started writing about his own experiences and dreams for the future. My own ND creative/artistic/ ultra sensory ingredients (synaesthesia) have been added to the mix for more substance. To some this series may seem to be pure entertainment but for us (who found it/find it hard to fit in) and for those who experience life as we do, it’s our love letter proving anything is possible. So these two little kids (us) are finally getting heard. As an introvert, INFJ/HSP/Empath, the opportunity to express is much appreciated. Now … we just need to find ways to get it out there so it reaches fellow ND’s!

  6. Mandy

    Thank you so much for this post. I love how you explain the different facets of ND while not diminishing the variety of identities that people choose. As an ND writer I feel like it’s such a fine line. I loathe the idea labeling a character to make them “relatable”. Like somehow saying this character has ADHD allows people to look for different ways to connect than they’d considered before having that information. At the same time I see the value in sharing that information, because so many of us want to see ourselves in the world. I feel like baiting is that wacky loophole where NTs can take less responsibility for portrayals. At the same time, I’m totally cool with and ND doing it (and I know that’s a bit contra). There’s so much about the ND experience that is unique to the individual. My hope is that becomes the bar and the standard-whether we mask, medicate, meditate, stim or all of the above and more-its all good. 🙂

  7. Gabriela

    Excellent post, Matthew. It is so refreshing to see neuro diversity included in the diversity discussion. As an author and educator with bipolar, I was especially interested in what you said about NT authors writing stories about ND characters, and how the portrayal can be at best limiting, at worst deeply harmful. Thank you for your thoughtful post and for shining a light on this crucial issue.

    I’m curious about your thoughts around disclosure. As you state above: “One of the issues of controversy is that editors and literary agents have placed a public cry for more stories that fall within this spectrum, asking for writers to self-identify that they hail from such a background and disclose which applies.”

    Certain forms of neuro diversity (like bipolar disorder) carry a huge stigma. While I completely agree with you about the importance of accurate representation, I do worry about the burden placed on writers to self-identify and disclose very personal information.

    On one hand, it’s important that ND readers be able to see their stories realistically portrayed in books. And as you illustrated, the odds of that increase dramatically if the author has a similar lived experience as that of the character. On the other hand, if authors are forced to disclose their own neuro diversity, doesn’t place an additional burden on these writers? And what if some writers do not want to disclose because of the stigma surrounding their neuro diversity? Will their stories and voices not be heard?

    I don’t know what the answer is, but I look forward to reading parts 2 & 3 of your series.

    1. Matthew Broberg-Moffitt

      Gabriela,
      Sorry it took so long to respond! I definitely emphasize and understand the double-edged blade that is self-identification when so much stigma persists and continues to be harmful.
      The reality is that stories that aren’t self-identified will continue to be published, either by those writers who can’t for the valid fear of exposure or those who don’t have the lived experience. And they will be bought and read, living and dying by the quality of their work.
      However, a process for those who do self-identify (even if it’s to publishing professionals alone) needs to exist and the overall system of querying and submission would benefit from clarity and compassion.
      I hope I addressed some of your concerns!

      Best,
      Matthew

  8. Navarre

    Matthew, thank you for this. As an ND individual, it can be difficult interacting with normal humans at the best of times, and inaccurate stereotypes continuing in media don’t help. People will say I’m too “normal” to be ND, but I’m not “normal” enough to fit in either which just puts me in the uncanny valley, I guess.

    I know some NDs who identify with Steris from Sanderson’s Mistborn Era II (Alloy of Law, etc.) books. No one says autistic there since it’s second world gaslamp fantasy, but she seems like an actual, fleshed out human being and not just a walking stereotype.

  9. Jessica Vázquez

    Thank you for writing this peace!

    I just want to add that the correct term is “neurodivergent” to refer to an individual who is neurocognitively different from what’s considered typical. The term “neurodiverse,” as the word “diverse” suggests, applies to a group with variety of neurotypes.

    As more people learn about the Neurodiversity Paradigm, it’s important that we use the language correctly.

    Sources:
    https://dart.ed.ac.uk/neurodiverse-or-neurodivergent/
    https://neurocosmopolitanism.com/neurodiversity-some-basic-terms-definitions/