Interview with co-editors of Sincerely, Your Autistic Child

Below is an interview with Emily Paige Ballou, Sharon daVanport, and Morénike Giwa Onaiwu, the co-editors of a brand new anthology, Sincerely, Your Autistic Child (Beacon Books), available now.

For more information, go to the Autistic Women & Nonbinary Network.

Please share a little about yourself and your background! 

Sharon: I grew up in Texas but have made the Midwest my home for more than twenty years. After a brief stint in Washington DC, I made my way back to the Midwest when the pandemic hit in March of 2020 to be close to my children. 

I have primarily focused my educational pursuits around women’s & gender studies, with a specific passion for restorative and transformative justice. I founded AWN with a goal to bring attention to the underdiagnosis, inadequate support, and underrepresentation of autistic women. After a few years, AWN expanded our work and mission to include all gender minorities as it more authentically represents our community. It’s been an amazing experience to build meaningful connections within the greater minority communities and actively seek ways for AWN to extend our outreach. 

Morénike: I was born in the US to parents who immigrated here from West Africa for college; I spent my formative years in the Midwest and we eventually relocated to Texas. I obtained my undergraduate degree and early career experience in Southern California, and also resided in a few other states before returning to Texas in adulthood, where I am raising my family. I’m a disabled non-binary woman, educator, advocate, and mom of six disabled biological and internationally adopted kids. My bonus daughter is grown and on her own; the other five range from elementary to college age and are still with me. 

I’ve been involved for a number of years in various forms of human rights and racial, gender, disability justice. My scope is pretty transdisciplinary, and in addition to solo projects I also work in collaboration with a number of like minded organizations and individuals, including AWN; I was an AWN Executive Board Member from 2014-2020 and still partner with them on several projects.

Emily: I grew up in the Midwest and graduated from the University of Georgia, where I was a drama/biology double major. I moved to NYC after graduation and I mostly work as an off-Broadway stage manager.

I was diagnosed when I was 28, and I’ve been involved with AWN for about seven years, first as part of the social media team and then as the co-editor of “What Every Autistic Girl Wishes Her Parents Knew” (the original version of “Sincerely, Your Autistic Child.”)

First, congratulations on the launch of Sincerely, Your Autistic Child: What People on the Autism Spectrum Wish Their Parents Knew About Growing Up, Acceptance, and Identity, available now from Beacon Press! How does it feel to have this book out in the world? What are you most excited about?

Sharon: Thanks so much for inviting the three of us to chat with you about our editing experiences, Alice! It still feels surreal to know AWN’s republication is finally available. I’m most excited for the readers to discover the sincere and beautifully vulnerable experiences that each chapter contributor graciously shared throughout the pages in this book. It personally takes a lot to reach out in the way the chapter contributors did in order to provide this kind of resource to parents. I hope the readers can appreciate and honor the writers as much as the three of us who have had the privilege of working with them over the past several years do. 

Morénike: It is SO hard to describe the feeling…it’s a giddy combination of hope, accomplishment, elation, and anticipation all churning together at once. I am so grateful that the book is out as it was truly a labor of love and such an honor to work with my co-editors and the chapter contributors. I think what excites me most is that this book represents a “meeting of the minds” in that it explicitly amplifies the perspectives of autistic people, but it intentionally strives to provide both conceptual and practical information to non-autistic readers, particularly (but of course not limited to) parents, professionals, and allies. Moreover, the book seeks to broaden the “face” of autism beyond common societal generalizations and thus debunk a lot of the misconceptions about autistic people and autism itself.

Emily: It feels great but also really, curiously, vulnerable to have this out in the world. So much of the work I usually do is transient; a show runs for one night or for a few weeks, and unless it gets extended or transferred, it’s over, and my role in it is finished. But this is something that’s now always going to be in the world.

I am most excited that the writing our contributors have brought to this collection is going to be the first introduction to the autistic community that a lot of parents are going to have, because they have all written so generously and open-heartedly about their experiences, and about their convictions that autistic people can have good lives, because I don’t think that’s something that parents are often told up-front when they have newly-diagnosed children.

There are some memoirs and other non-fiction works by autistic and neurodivergent writers. What is different and unique about this book that reflects autistic culture today?  

Morénike: The fact that we are even able to ponder this point, in my opinion, is evidence of the amazing progress that has been made over the years…at one point, you could count such books on one hand and still have fingers to wiggle; now there are several neurodiverse reading options available to choose from, which makes me so proud of and happy for our collective community! However, though there are a number of great books out there, I do think that the breadth of diversity within this book is a unique factor. 

Sincerely, Your Autistic Child’s contributors include people who are Black, Latinx, Asian and Pacific Islander, Indigenous, Arab, multiracial, multicultural, and multinational; people who are gender diverse including cisgender, transgender, non-binary, agender, intersex, and metagender; people who range in age from early 20’s to late 60’s; people who are primarily non-speaking full-time AAC users as well as those who primarily communicate by speaking and also part-time AAC users; people who are straight, queer, and everything in between; people who are single and people who have partners or spouses; people who speak English as a second or third language and others who speak English as a primary language; people with a range of supports needs; people who are parents and people who are not; people who do and do not work outside the home – etc. The book is very reflective of the heterogeneity of our community. 

Emily: I think it’s important that, because of the number of contributors to this anthology, a really wide range of gender and sexual identities and experiences are represented, because I think that’s something that doesn’t get discussed in parent circles, or between professionals and parents of newly-diagnosed kids very much, but a huge percentage of autistic people identify as LGBTQIA or gender nonconforming.

And we did make an effort with the republication to make sure that the way we discussed gender was a little bit more expansive, but even in the original publication, many of our contributors were not people who necessarily had a simple or one-dimensional relationship with gender. I think that’s important for parents to see in adult autistic people because those are experiences that their children are likely to have as they get older, and it doesn’t need to come as a shock or surprise.

Sharon: Working with a publisher this time around provided AWN with an opportunity to focus on the additional content we wanted to include which more accurately reflects autistic people and our community as a whole. As Emily so nicely explained, we seldom see sexual identity and gender discussed in parent forums, and this republication provided us with the chance to be more intentional in these areas.

How did the three of you become co-editors of this book? What was the process like working and editing together? 

Sharon: AWN’s agreement with Beacon was that we would choose the editors for our re-publication. Emily and I by default stayed on for the new anthology since we were editors for the original publication. AWN has a close and longstanding relationship with Morénike, especially as it relates to this kind of work. We invited them right away without hesitation. For the most part, our combined efforts as well as the editing process worked itself out organically.

Emily’s heartfelt loyalty to the original anthology meant the world to all of us at AWN. She took extra care and caution to ensure the spirit of the original work was not lost in the republication. She took additional considerations to ensure Beacon understood what each original chapter contributor intended to convey whenever there were edit suggestions. She personally reached out to the original contributors to confirm they were comfortable with any review and edit requests.

Morénike is an amazingly talented editor with unbelievable attention to detail. They brought necessary additions, meaningful insight, and a fresh take to the new book which included them working closely with our new chapter contributors. Morénike went up and beyond to make themselves available to answer any of the writers’ questions. Besides all of that, our shared love of organizing our work in spreadsheets was a bonus which can never be underestimated!

Morénike: I think Sharon’s answer sums things up well. I do want to add a little-known fun fact: Sharon is the person who originally conceived of the idea for this book years and years ago – without them neither the original book nor the republication would exist! It truly is both Sharon and AWN’s “baby.” Being entrusted to nurture and bring forth their vision and incorporate our thoughts and ideas has been as much of a privilege as it has been a responsibility.

I learned so much working with the two of them, and I am appreciative that we all bring different strengths to the table that complement one another well. Because of the specific ways that our processing and working styles differ from one another, we were able to help one another identify any areas of the book that might have needed more attention and/or possible refinement.

As an editor, I have a soft spot for anthologies because you can present a wide range of perspectives. What are the challenges and joys of creating an anthology? What were some intentional choices you three made in selecting the contributors and editing their work? 

Sharon: With respect to selecting contributors in the original anthology, I personally reached out and invited people whom I believed would be able to speak to parents about very specific life experiences while growing up, and what they wish their parents had known during their childhood.

AWN was looking to expand on and reflect more on the work we do around gender minorities in this republication. I really looked to Morénike’s feedback and insight with this task as they brought a renewed take to the editorial team. We decided fairly quickly on a list of people to invite and I believe we were only a week into our work on the new book and Morénike had already sent out invitations to the new chapter contributors! 

Morénike: Working with the contributors in finding the most authentic way to share their stories was pure joy (and very humbling as well). With regard to challenges, as a team we worked pretty hard to foresee and minimize those as much as we could. 

The COVID-19 pandemic, however, unfortunately created a few challenges as we were putting together the anthology – the biggest one being how the ongoing disruption to infrastructure and lack of equitable technology access impacted the ability of one of our invited contributors to complete and submit her chapter due to factors beyond her control. As such, our book has 29 chapters instead of 30.

We completely understood her predicament; the situation was unprecedented and it wasn’t anyone’s fault. Beacon did allot additional time in hopes that it would work out, but sadly no one could predict the way things were going to unfold at the height of the pandemic. Although we were unable to publish this particular contributor’s chapter, we do plan to still work with and highlight this individual – and we made a point to recognize her in the book’s acknowledgements as well.

Emily: I didn’t have an active hand in the selection process itself, but one of the fascinating things to me was reading through all of the submissions we received, especially when we were first putting What Every Autistic Girl Wishes Her Parents Knew together for the first time, and how the chapters fell into the major themes they did so naturally. In a way the book almost put itself together, it was just so obvious how the things that everyone wanted to say fit together.

Does it matter to have autistic editors editing autistic writers? What was the experience like for you and did you receive any feedback from the contributors about being edited by someone who is not neurotypical? 

Sharon: Yes, I believe it absolutely matters! I witnessed on several occasions how we’d receive questions or edit suggestions from our publisher, and how the editorial team was able to provide important context around why the autistic writer chose a certain word or phrase. That kind of specific oversight from autistc editors on behalf of autistic writers is invaluable in a multitude of ways. 

Morénike: It is imperative. Being autistic ourselves, we bring a level of understanding that others do not have, and as such we work diligently to ensure that throughout the various steps of the publication process we are able to preserve the voice and intended meaning of the author in a way that others cannot.

Emily: I think it does matter. Not that non-autistic editors can’t be good or effective editors for autistic writers, but for instance, something that I think readers will notice about this collection is that all of our contributors write really distinctively, and all sound very different from each other, and that was something we were determined to see as a feature and not a bug of this collection–that all of our contributors sound like themselves and that we didn’t want to flatten or conceal that, because autistic people communicate in all kinds of ways, and that’s part of the reality that we wanted to convey.

I’m not sure we got feedback from contributors specifically about being edited by someone who’s also autistic, but most of our contributors who gave us feedback said that they’d had a positive experience.

What are some major themes or messages you hope the readers of Sincerely, Your Autistic Child will take away from it? 

Sharon: That parents don’t have to fear their child’s autism diagnosis.

Morénike: Being autistic is part of the tapestry of humanity, and we are all better served (people in general, regardless of neurology) when acceptance, access, and supports are offered to all. 

Emily: That having a good life as an autistic person can look a lot of different ways, but that acceptance of us as autistic people is at the heart of what makes that possible.

I think a lot about how the publishing industry is still very ableist and inaccessible. What changes would you like to see that would result in more books by autistic writers? 

Sharon: There are just so many harmful and ableist stereotypes that falsely inform the publishing industry about autistic and disabled authors. We need more publishers who make deliberate efforts to connect with autistic writers. We also need publishers who are willing to set aside the ways they are accustomed to approaching their work and relationship with writers so they can be open to providing accommodations that work towards everyone’s success. Those few publishers who are working towards that end are busting the myths and I hope the industry as a whole will take notice.

Morénike: I could go on for hours and hours about how ableist and inaccessible the publishing industry is as a whole! I am certain that we have missed out on many extraordinary books as a result. I think that a major overhaul is needed. Our world has evolved a lot over the years: the way readers consume books has changed; new genres have developed; publishing companies have merged; major brick and mortar bookstores have closed; elements such as Amazon and other online sales tools, the rise of self-publishing, e-books, and audiobooks have completely “changed the game” – yet the old, no-longer-as-accurate “playbook” is still what we are operating by. There needs to be a vast paradigm shift in so many areas. Also, the works of disabled creators, including authors and especially those with multiple marginalizations, must be prioritized. 

Emily: Speaking as a reader, and not someone who has a great deal of experience with the publishing industry, I wish that people working in publishing were a little more familiar with the real variety and depth of autistic experience.

I think in fiction especially, autism is something that’s still often seen as a subject of curiosity for non-autistic readers, and not as something that deserves to be well-represented for autistic people, too, who are witnessing how we’re being portrayed and how our experiences are being reflected, if they are at all. I think that’s something editors and publishers might not be considering when they’re looking at work about autistic characters largely written by non-autistic people to satisfy the curiosity of non-autistic people, or trying to discern what constitutes a well-written autistic character.

And also that we’re not just information sources about autism for non-autistic people, but that we live all kinds of stories, and want to read all kinds of stories, and maybe consider that when they’re evaluating work that they don’t know if anyone will buy or read because it’s not what their idea of a story about autistic people is.

April was Autism Awareness Month and it’s also referred to as Autism Acceptance Month by some folks. What do you personally dread about ‘awareness’ and how too many non-autistic people just love to speak over autistic people and spread that magical (sarcasm) awareness? What would you love seeing instead by autistic people for autistic people? 

Sharon: For all the progress autistic advocates have made to turn April into a month promoting acceptance as opposed to awareness, we are still fighting hard to tread water among the harmful messages that flood every facet of our lives for 30 very, very, very long days in April.

Morénike: For me, though they are smaller, the continued existence of counter-awareness campaigns such as Autism Acceptance, Red Instead, Light It Up Gold (Au), Tone It Down Taupe, Autism Pride, etc. is a testament to our community’s resilience and helps to reduce the sting of April somewhat.

I truly, truly wish that we can find an effective way to convince people worldwide to retire the puzzle piece and utilize the infinity symbol instead. Slowly but surely…

Emily: I always dread finding out that yet another performer or public figure who I like and admire is helping advocate for an organization that doesn’t want people like me to exist.

Also the painfully terrible graphic design of so many awareness month products that I get fed ads for on social media all month.

I love seeing the outpouring of support for each other from other autistic people.

I was touched by the dedication of the book to the autistic community and Mel Baggs who is now an ancestor. What does a better future for autistic people steeped in justice and liberation look like to you? 

Sharon: I believe the tremendous loss our community felt when Mel became an ancestor continues to inform our combined efforts, and it felt right to honor Mel in the dedication of our book. It’s difficult to imagine a world with true justice and liberation for marginalized people and communities. Especially for Black, Brown and Indigenous Disabled People. But when I dream of better days I imagine it includes the weight of despair being lifted, our burdens turned to comfort, and being able to truly trust that we are safe and valued.

Emily: I’m not entirely sure, but I wonder a lot about the kinds of things we could accomplish if so many of us didn’t have to fight so hard just to get through every day or every week.

Morénike: I don’t think I could express it any better than what my colleagues have shared. The only thing I’ll add is that I love, and often use the following quotes, and think they apply here: “Until all of us are free, none of us are free,” and “Justice is what love looks like in public.”

 

ABOUT

Emily Paige Ballou is an old Millennial from the Midwest who currently lives and works in NYC, where she primarily stage manages off-Broadway new plays and new musicals, including works such as the Hello Girls with Prospect Theater Company, Nikola Tesla Drops the Beat at the Adirondack Theatre Festival, and Rose with Nora’s Playhouse. She graduated from the University of Georgia, where she was also a member of the Demosthenian Literary Society. Previous publications include pieces in the Thinking Person’s Guide to Autism, The Real Experts: Readings for Parents of Autistic Children, NeuroQueer, Barking Sycamores, and Fuckit: A Zine.

Twitter: @epballou 

Sharon daVanport is the Executive Director of the Autistic Women and Nonbinary Network (AWN). Sharon’s work encompasses several aspects of the wider and cross-disability justice movement, including a focus on restorative and transformative justice. Sharon is a steering committee member of the National Disability Leadership Alliance, a member of Consortium for Citizens with Disabilities, serves as treasurer for Crushing Colonialism, an advisory board member at Felicity House, and they were inducted into the 2020 Susan M. Daniels Disability Mentoring Hall of Fame. Outside of Sharon’s work in disability advocacy, they have nearly a decade of experience as a social worker, and they are a parent of four diversely neurodivergent adults.

Twitter: @myshyrona 

Morénike Giwa Onaiwu PhD(c), MA (she/they) is a global advocate, educator, and autistic person of color in a neurodiverse, multicultural, serodifferent family. A prolific writer, consultant, and social scientist/activist whose work focuses on meaningful community involvement, human rights, intersectional justice, and inclusion, Morénike is a Humanities Scholar at Rice University’s Center for the Study of Women, Gender, and Sexuality, Co-Chair of the Women’s HIV Research Collaborative, and a member of several executive boards.

Morénike has been an invited speaker at the United Nations, the White House, and numerous peer-reviewed international conferences in addition to contributing author/editor of several publications, abstracts, and books focusing on community engagement, intersectionality, disability, advocacy, and inclusion. Publications of note include the first anthology on autism and race All the Weight of Our Dreams: On Living Racialized Autism, a 2021 edited collection from Beacon Press Sincerely, Your Autistic Child: What People on the Autism Spectrum Wish Their Parents Knew About Growing Up, Acceptance, and Identity, and the forthcoming Neurodiversity en Noir: A Collection of Black Neurodiverse Voices from Jessica Kingsley Publishing (2022).

Follow Morénike’s work at: https://MorenikeGO.com

Twitter: @MorenikeGO

 

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