Autistic voices have come together to create a dynamic anthology, put together by the Autistic Women & Nonbinary Network.
Editor & Author Interviews + Book Info + Autistic Women & Nonbinary Network Info
Today’s interviews are a little different than my usual mystery/thriller/suspense authors. I’m honored to interview several individuals who have helped to create the anthology, Sincerely, Your Autistic Child. Due to the number of respondents, I’m putting bios first today. Information on the Autistic Women & Nonbinary Network follow the interview.
Sincerely, Your Autistic Child
A diverse collection of autistic voices that highlights how parents can avoid common mistakes and misconceptions, and make their child feel truly accepted, valued, and celebrated for who they are.
Most resources available for parents come from psychologists, educators, and doctors, offering parents a narrow and technical approach to autism. Sincerely, Your Autistic Child represents an authentic resource for parents written by autistic people themselves.
From childhood and education to culture, gender identity, and sexuality, this anthology tackles the everyday joys and challenges of growing up while honestly addressing the emotional needs, sensitivity, and vibrancy of autistic kids, youth, and young adults. Contributors reflect on what they have learned while growing up on the autism spectrum and how parents can avoid common mistakes and overcome challenges while raising their child.
Part memoir, part guide, and part love letter, Sincerely, Your Autistic Child is an indispensable collection that invites parents and allies into the unique and often unheard experiences of autistic children and teens.
To purchase a copy, click any of the following links: Beacon Press, Amazon & IndieBound
In Order of Appearance
Sharon daVanport is a disability justice advocate, speaker, and educator who serves as the founding executive director of the Autistic Women & 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, and strengthening leadership and partnerships through collective capacity and horizontal organizing practices. Sharon is passionate about access to sexual and reproductive health care, support and advocacy for victims and survivors of intimate partner violence, gender diversity and racial equity in disability rights organizations. To read more, click here.
Morénike Giwa Onaiwu, PhD(c), MA (she/they) is a global advocate, educator, disabled person of color, non-binary woman, and parent of children on the autism spectrum in a neurodiverse, multicultural, twice-exceptional serodifferent family. A prolific writer and social scientist/activist whose work focuses on intersectional justice, meaningful community involvement, human rights, and inclusion, Morénike, who was raised in the United States by West African immigrants, is recognized as a leader in various social justice activism endeavors. To read more, click here.
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.
Lei Wiley-Mydske is an Autistic activist, wife and homeschooling mom. After being misdiagnosed for many years, Lei was diagnosed as Autistic when she was in her thirties. Lei is also the director and founder of the Ed Wiley Autism Acceptance Lending Library, which serves the communities of Stanwood & Camano Island, WA by lending books and materials that promote the ideas of autism acceptance, social justice, disability rights and neurodiversity. She is an administrator on the popular Facebook page “Parenting Autistic Children With Love & Acceptance“.
In her spare time, Lei enjoys reading, painting, cooking, hiking, science fiction, comic books, and just spending time with her allistic husband and amazing Autistic kid.
Tell us about the history of this project. What brought each of you to this project, both the original and the republication?
SdV: AWN initially had no idea what self-publishing would entail, so the original anthology was something we went into without completely realizing what we were doing. However, it ended up being one of the best decisions AWN ever made. After navigating all the challenges and rewards of self-publishing, we ultimately ended up connecting with Beacon Press and the re-publication turned into an entirely different kind of project.
Our Beacon Editorial Team was amazing to work with, and they held our hand along the way. Even though there are no perfect experiences, I’m grateful that AWN forged ahead and met all the challenges that often accompany the publishing world because now we have an amazing and groundbreaking resource to offer parents.
EP: Well, I was originally asked to copy-edit the original publication shortly after I first joined AWN, but before too long, the publication was in need of another editor to come on board, and Sharon asked whether it was something I’d consider taking on. Not really knowing what I was getting myself into, I said yes.
I felt like it was something we could probably get done in six months or so. It actually took most of the next three years.
MGO: Sharon, Emily, and another colleague of ours (who has since relocated) did an amazing job editing the original publication. When the recent re-publication opportunity with Beacon Press arose, I was honored to be invited to join the editorial team, especially since I had enjoyed my experience co-editing another AWN publication, a landmark anthology on race and autism entitled All the Weight of Our Dreams: On Living Racialized Autism.
Having been involved with AWN in various capacities for a number of years, I felt that with this re-publication AWN was uniquely positioned to emphasize several important concepts that hadn’t been adequately addressed by books written by non-autistic authors, so I was “all in.”
With more than twenty writers, how did you make the material cohesive? Did you ask for specific content? Invite specific writers? Or collect stories, then find a throughline?
EP: We did not ask for specific content; we deliberately left the question pretty open to individual interpretation, and though there are some obvious common themes to all of the contributions, I was pretty astounded at the variety of answers that our contributors came up with. It was also remarkable to me how easily the entries we received organized themselves into the throughline that they did.
Initially I didn’t think I’d be able to contribute a chapter myself, but as I read through everyone else’s submissions for the first time, I found myself inspired to write the chapter that was the introduction to the original publication, and became the conclusion to the republication.
MGO: One of the reasons that I love edited collections such as this one is the collaborative aspect. It has its challenges, but it’s also so rewarding. In some ways it reminds me of a holiday gathering with family. Everyone brings something different, but it all ends up coming together organically.
Like Emily mentioned, we did not ask for specific content because we wanted the authors to be able to write from the heart, free of restrictions. We did, however, invite specific people, which included those who were involved in the original as well as select new contributors. We felt it was important that we reflect the diversity of the autistic community, so we intentionally sought our authors from a variety of backgrounds in terms of age, geographic location, gender, race, sexuality, religion, cognitive ability, marital status, culture, etc.
How did you come to work with Beacon Press for republication? What was that process like?
EP: I was so grateful and impressed with how Beacon really shepherded us through the process of professionally publishing a book for the first time. When we self-published the original publication, none of us had ever done such a thing before, and while I asked for advice from people who had, I felt pretty alone in figuring out the sequence of things that needed to be done to bring the book together, and it was a lot to be responsible for both the editorial process (involving 19 different contributors at that point), and the physical logistics of putting a book together.
Our production team at Beacon was amazing about making sure we understood what was happening at every stage of the process, and that the creative decisions were ones that we felt good about.
MGO: By the time I joined the editorial team, AWN had already formally established its partnership with Beacon Press. Given the consistent feedback about the positive impact What Every Autistic Girl Wishes Her Parents Knew (the title of the original book) had on most readers, I was already excited about the prospects of the re-publication in general; learning that we would be working with Beacon Press just added to that joy.
For over a century Beacon Press has built a solid reputation as a respected social justice publisher, which aligned well with AWN’s ethical values. They are a seasoned, efficient team and I definitely feel that I learned a lot throughout the process of working with them. I also think that in many ways Beacon also learned a lot from us as well, especially with regard to increased accessibility and better understanding of the neurodiversity paradigm.
Without books like this during your childhood and very little understanding of neurodiversity, what has been the most important aspect of your life that helped you gain acceptance and identity for yourself?
LEI: Honestly, the one thing that helped me was having a child who was very much like me. The parts of them that people wanted to “fix” or change were the parts of them that were the most like me, and I loved those parts of my kid! It has always been a struggle to love myself and accept who I am because of how I was raised and how the world treats disabled people, but it has never been hard to love my child! What that taught me was that if I wanted my kid to know they were amazing and loved and valuable, I needed to know those things about myself too.
EP: I think, first, finding a place for myself in the theater world, which was maybe the first time in my life up to that point that I felt like my real capabilities were both needed and wanted within a community, and that there was actually a chance I was going to be able to earn a living in a way that wouldn’t require tying myself into knots for other people’s comfort every day.
And second, running across (almost entirely by accident) the writing of other autistic people about being autistic for the first time, which at the time (2003-2004) was almost entirely scattered across the internet, and wasn’t necessarily easy to find if you didn’t know what you were looking for, so I feel very fortunate that I found some of the writing that I did (including by Mel Baggs, who would later on contribute a chapter to the book) at a time when I really needed it.
MGO: Lei’s answer essentially describes my feelings, but in a much more heartfelt and eloquent way than I think I could express it. The need to raise my children authentically and to instill pride and self-acceptance in them necessitated that I develop and mirror those traits myself.
The publication of this book shows that there is simultaneously room to provide information about neurodiversity to the larger society and that society needs to do a better job accepting and understanding neurodiversity. How do you feel current society is doing with regards to creating space for neurodiversity? What is the larger society getting right and getting wrong?
LEI: A few years ago, not many people knew about neurodiversity. Today, I see a lot of people talking about the benefits of neurodiversity, specifically in the workplace. I think in some ways that is positive, but in many ways it is not helpful to neurodivergent people who are not tech oriented, or who have skills that may not benefit capitalism. It’s not helpful to neurodivergent people who need a lot of support and may not be able to work.
I think that the thing people get wrong is that neurodiversity must only be celebrated or accepted when it can make somebody else money or if the person has some kind of exceptional skill. The truth is that every person, regardless of neurotype, is deserving of respect, rights and dignity because they are human, not for what they can or cannot do.
I also think that people confuse neurodiversity with autism when neurodiversity is literally all of us.
MGO: Society unfortunately gets a lot wrong when it comes to neurodiversity. As Lei mentioned, people often conflate neurodiversity with autism when it is so much broader than autism; it’s everyone. It’s my dyslexic older brother; my intellectually gifted daughter; my intellectually disabled son; my autistic child with ADHD – it’s the reality of the very real neurological diversity that exists among human beings.
But another thing that society often gets wrong is the way it completely misconstrues what neurodiversity and acceptance actually mean. It’s disheartening to read the inaccuracies sometimes, such as, “Neurodiversity proponents don’t believe they are disabled; they are merely different.” Ummm…exactly which “neurodiversity proponent” did you get that nonsense from? Because that might be their personal opinion, but collectively, it is accepted as both a disability and a difference. Disability is not a dirty word.
It is possible to believe that all people deserve acceptance and to also acknowledge that we are disabled and different; it doesn’t have to be only one or the other when both are true.
Lei, you write, “Your child is Autistic. Your child is disabled. These are not negative things. These things just are.” Those are incredibly powerful lines. How did you come to see Autism this way? What brought you to such clarity?
If a parent says they love their child but still think that disability or autism are bad words, that’s sending a very strong message to their children that some pretty big parts of them are actually not lovable at all. It is very confusing to hear these conflicting messages.
In my parenting, I always wanted my child to be proud of every part of them, but also did not want to deny the reality that being disabled/autistic in a society that is inaccessible and even hostile to their neurology is hard! I wanted my kid to know that their existence as who they are was a natural and neutral fact. The unwillingness of the world around them to accept and accommodate all kinds of bodies and brains is the actual problem that needs to be solved.
I think learning about the social model of disability and always seeking to have an open, honest, supportive and loving relationship with my child has led me to this way of thinking.
Emily Paige, you write quite eloquently about how each child has a place in the world. You were diagnosed later in life and didn’t have the language to identify or look for support until adulthood. How did you find your place in the world? What most helped you?
I know I already talked a little bit about this, but it’s hard to overstate how important studying drama was to me, both in terms of feeling like my abilities had a place, and just how many actual life skills and communication skills it teaches. And it was striking to me even while it was happening, but even more so in retrospect, how few people knew that, how many people considered theater a frivolous or unrealistic endeavor, and when I figured out that I wanted to stage manage, how few people even knew that existed as a career field, and that we live in a much bigger world than a lot of people raising neurodivergent kids know.
Also just reading a lot, because even though there was almost no writing explicitly for or about autistic girls when I was growing up, there have almost always been characters I identified with, because the reality is that there have always been neurodivergent people writing.
Morénike, your story describes your experiences, but is also written in a rhythmic and patterned way. Does the style of verse reflect how you process information? Is it also part of how you perceive the world, and connected to Echolalia? If not, what led to your decision to write in such a stylized and effective way?
Cool that you picked up on that! 🙂 In some ways it does mirror how I think about, interpret data, and communicate information. I had never heard the term echolalia until adulthood, but although I didn’t know what it was called (or that there was even a formal name for it in the first place), I’ve been processing things in this way for as long as I can recall. It just feels natural.
Until it was recently destroyed in a flood that resulted from Texas weather and power issues, my mother had several recordings of me as a young child talking and singing; I absolutely loved scripting. The oldest recording features 15 month old me singing “The Twelve Days of Christmas” in its entirety (even though it was several months into spring/early summer, lol).
I was also hyperlexic; my advanced reading and writing abilities far surpassed my non-autistic peers. Temple Grandin describes how she “thinks in pictures,” and although I am definitely drawn to visuals, I have always been verbose. I’ve always considered the written word to be my “native” language, and as such my mind probably operates more like a word processor mixed with a “sorting hat” than like Temple’s internal camera.
Like much of my writing, I pretty much wrote my contribution in one sitting/take. I just go with what I feel and pour it into the material. I like writing because it helps me to understand things as well as be more easily understood, but one reason I think I engage in echolalia is because it fulfills something inside me that’s hard to explain. It can be both soothing and stimulating…and it just makes things make sense.
Life, to me, has a certain rhythm to it. When you’re riding in a car on a rainy day, the windshield wipers make a certain song (or group of songs, depending upon the actual setting). I saw, and still to this day, see, objects/shapes/figures in carpet fiber; in the texture of a wall; there’s a pattern for walking down stairs or for putting things away or preparing for one’s day – all of these things are visceral experiences for me. Certain words and/or numbers and/or names just have a satisfying sound to them whether spoken.
The authors for this anthology are gender diverse and come from a variety of ethnic backgrounds, first languages, and ages. How do those diversities intersect with neuro-diversities? What makes it important for parents (and society in general) to understand the larger picture for neuro-diverse people?
EP: I would say it’s important for parents and educators not to be surprised or disbelieving when autistic/disabled people turn out to have experiences or identities that are different from the assumed default in more than one way, because most of us actually do. Especially with regard to gender diversity, because the majority of autistic people identify as non-heterosexual or gender non-conforming in some way.
I think most parents and educators still don’t know this, and these are also experiences concerning which society treats young people like they couldn’t really know what they’re talking about, and which also might mean that someone needs more personalized support, access to particular communities, resources, or adult role models.
MGO: I wholeheartedly agree with Emily. It’s so important for people to understand this. Autistic people reside in a world that’s designed for non-disabled individuals, and as a result ableism impacts all of us to some degree or another. However, though autism is a core part of many of us, those of us who have additional aspects of our identities that are marginalized as much as if not more than autism have a different set of experiences than our peers. That added layer of complexity deserves to be acknowledged and addressed.
Were there any surprises for you as you read the stories of the other writers?
EP: I wouldn’t say surprises, but I was pretty delighted at how much diversity in writing style and ways of thinking about our experiences there is among our contributors.
One of the stereotypes that still exists about autistic people is that we all express ourselves in this stiff, flat, expressionless way, and as we put the book together, it became clear that one of the important things about it was the range of communication style of the writers involved, and that autistic people communicate in all kinds of ways.
MGO: I think what probably surprised me the most is how moved I was – and am – to read our contributors’ raw, vulnerable truth. I wasn’t expecting that.
As I’d read the original book cover to cover many times over the years, I was familiar with much of the content, and because I’d worked pretty closely with the majority of the new contributors as they “fine-tuned” their chapters, for the most part I’d also read much of their material too long before we submitted the manuscript to Beacon. The “new-ness” factor or lack thereof doesn’t seem to determine whether or not something resonates with me; I could open it right now and encounter several parts of the book that make me teary eyed, or make me laugh, etc.
Tell us about AWN.
From the Website and founder Sharon daVanport
“AWN’s mission is to provide community, support and resources for Autistic women, girls, transfeminine and transmasculine nonbinary and genderqueer people, trans people of all genders, Two Spirit people, and all others of marginalized genders.” (From the website.)
AWN, to my knowledge, is the oldest organization that focuses explicitly on autism, gender, and disability justice; it was founded by Sharon in the basement of their home ten years ago in an effort to meet the unmet needs in our community and has grown into a national nonprofit with a reputation for leadership and restorative justice.
When obtaining my MA years ago, I selected AWN as the site for my culminating project. I’d like quote a few remarks that I collected (and obtained permission to share) during that project from some of the community members around the globe who have benefitted from AWN’s work:
- “As a neurotypical parent, I was SO ignorant of the issues. I have learned so much from AWN!”
- “Grateful my child has AWN as a role model, trailblazer, and place of support.”
- “This is an organization I can truly trust. Thank you!”
- “Know that you are making a difference – hugs.”
- “What a breath of fresh air. This organization is incredible and has helped me so much!”
- “Thanks so much! You have truly advocated so fervently for our community. I love AWN!”
- “Please know that your efforts to counteract ignorance and fallacies about autism ARE working.”
- “I can never say thank you enough to the many strong autistic advocates who have taught me to listen to my own child’s voice. I may have lost her forever if it wasn’t for the awakening I had due to opening my mind and heart to truth being shared by those who know best.”
What’s next for you in your writing or advocacy goals?
EP: I have about half a dozen other creative writing projects on the back burner that I’m looking forward to getting back to, in addition to some hiking and some home repair before the post-pandemic theater world gets back in full swing again.
MGO: AWN will continue to engage in important intersectional work in the areas of gender, autism, and both restorative and disability justice – education, advocacy, material support, and more.
AWN will also publish three additional books with Beacon Press over the next few years! Please follow AWN on social media for more details! Additionally, I (Morénike) am currently working on a book about neurodiversity in the Black community that Jessica Kingsley Publishing will release in 2022 – and I’m simultaneously wrapping up my dissertation too in hopes of being done with being a “professional student” once and for all!
Such a pleasure to have all of you here to talk about your work and experiences. Thank you for your candor and this amazing body of work that you all have put together.
Autistic Women & Nonbinary Network
The mission of Autistic Women & Nonbinary Network (AWN) is to provide community, support, and resources for Autistic women, girls, transfeminine and transmasculine nonbinary people, trans people of all genders, Two Spirit people, and all others of marginalized genders.
AWN Network is dedicated to building a supportive community where we can share our experiences in an understanding, diverse and inclusive environment. AWN is committed to recognizing and celebrating diversity and the many intersectional experiences in our community.
We welcome all women, transgender and cisgender, transfeminine and transmasculine non-binary and genderqueer people, Two-Spirit people, trans people of all genders, and all other people of marginalized genders or of no gender. AWN recognizes and affirms all people’s gender identities and expressions, as well as choices about disclosure, transition, and going stealth.
Our goal is to dispel stereotypes and misinformation which perpetuate unnecessary fears surrounding an autism diagnosis. We seek to share information which works to build acceptance and understanding of disability. Welcome to AWN Network!
To learn more about AWN, click on any of the following links: Website, Instagram, Facebook, Tumblr & Twitter
Elena Taylor is the author of All We Buried, available now in print, e-book, and audio book format at all your favorite on-line retailers. And don’t forget many independent bookstores can order books for you and have them shipped to your home or for curbside pickup.
For more information on All We Buried, click on the link here to visit the home page.
Foreword INDIE and Silver Falchion Award Finalist, Best Mystery 2020