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“Honey, What if the Baby is Autistic?” The Importance of Neurodiversity Libraries

Published onDec 27, 2023
“Honey, What if the Baby is Autistic?” The Importance of Neurodiversity Libraries

Author’s note about language: This article uses identity-first language (“A/autistic”), rather than person-first language (“person with autism”), as a matter of positive social identity.1 Further, the author denotes capitalized “Autistic” as an indicator of cultural affiliation, while using “autistic,” lowercase, to describe the neurodevelopmental expression of Autism Spectrum Disorder.

1. “Honey, What if the Baby is Autistic?”

The summer of 1994 in eastern Washington state was scorching hot. The heat and lack of relief not only set the stage for the Tyee Creek Fire and Fire Storm 1994—which blanketed the state in wildfire smoke and plummeted air quality—but also proved personally intolerable for me. I was 19 years old, a young Air Force bride, and in the third trimester of my first pregnancy. The apartment I shared with my then-spouse did not have air conditioning or adequate air filters, causing recurring bouts of asthma and heat exhaustion. 

One place I could escape the heat and smoke was the library at Fairchild Air Force Base. I spent hours upon hours in the sections dedicated to pregnancy, childbirth, and child development, soaking up every bit of information I could. After reading all relevant books in the small library on base, I branched out to the public library, picking up anything that sparked my interest. One book on child development had a brief chapter on autism, a topic becoming more prevalently discussed at the time. I pulled several other titles off the shelf, reading page after page about a disorder which described children “locked inside their own worlds,” unable to communicate or interact with others in any meaningful way. 

That night, my spouse came home from a swing shift to find me sobbing, curled into a fetal position on the bed. No stranger by that time to pregnancy-induced mood swings, he asked, “What’s wrong now?”

I described everything I had read, including every horrifying detail of what I could only imagine as a parent’s worst nightmare: autism. Finally, I cried, “Honey, what if the baby is autistic?” Without missing a beat, he countered, “Even worse… what if the baby is artistic?” To him, and perhaps to the rest of the world, autism was a condition that did not warrant much consideration. After all, we were “normal” people from “normal” families. Such horror stories were not written about or for people like us. 

Today, autism is no longer far removed from the reality of most families. The Center for Disease Control now estimates one in 36 individuals will be diagnosed with autism, possibly due to improved diagnostic criteria, awareness, and screening.2 Families are likely to have at least one autistic member or know someone who is autistic. Unfortunately, stigma, fear, and misunderstanding remain prevalent.

2. “Autism Primarily Affects Boys.”

In 2006, my current spouse and I adopted two siblings through kinship care. They were born 13 months apart, the first placed with us at seven months of age and their younger sibling six months later, at birth. Both seemed to have distinctly unique ways of communicating and specific preferences regarding their environment and interactions while playing. Both actively avoided eye contact while bottle-feeding or communicating. Both had been assigned female at birth and while their behaviors and development were not typical, they did not align with what books and professionals suggested as autism markers. We sought speech therapy for both as toddlers but developed our own, child-led, ways of communicating at home. When they started school, each had Individualized Educational Plans (IEPs) to accommodate their learning needs, but the school psychologists did not suggest either might be autistic. We were told,“Autism primarily affects boys,” when I asked if it could be a possibility. 

Years later, I learned that my children and I are part of a growing demographic of people assigned female at birth and identified as autistic. Individuals within this population are more likely to be misdiagnosed or remain undiagnosed due to differing presentation of autistic traits and a tendency to “mask” those traits.3 It’s not so much that autism primarily affects boys. Rather, non-males are less likely to receive an early diagnosis, or one at all. The stories of Autistic people assigned female at birth are crucial to furthering societal understanding and changing perceptions.

3. “Your Child has Autism Spectrum Disorder.”

In 2015, the older of the two siblings was diagnosed with what was by then called Autism Spectrum Disorder (ASD). I read more books from the library. Some were brand-new, others were over a decade old but “highly recommended.” They were all written by authors perceived as experts on ASD: non-autistic doctors, psychologists, researchers, and even several written by parents of autistic children. ASD still sounded just as scary as it had when I first read about it more than twenty years ago, but none of those descriptions sounded like my children. My children weren’t “trapped” in their own worlds—they just communicated and experienced the world differently.

We were initially told our child would need between 20 and 40 hours of intensive Applied Behavioral Analysis (ABA) therapy per week. This, the psychologist explained, would be our child’s best chance for a successful life. The promise of ABA was to make my child more like their peers: Diminishing autistic behaviors was the goal. Websites of support organizations run by non-autistic parents listed on the packet of information from the psychologist, articles by medical providers, and books I found in the public library all echoed the importance of ABA.

In our rural area, there was only one ABA provider with a waiting list shorter than eighteen months, and she did not accept clients over the age of five years. Our child was already eight. Discouraged, I turned to social media to ask my network what options our family should consider. A friend told me she knew someone who ran a neurodiversity library that offered a lot of resources. She connected me to Lei Wiley-Mydske, co-founder of the Ed Wiley Autism Acceptance Lending Library and the neurodiversity library movement. 

I lived three hours away from Lei’s library but established a relationship that continues to this day. After viewing the collection of titles offered by the Ed Wiley library, I began ordering and reading books written by authors who were Autistic. It wasn’t long before I gained a more hopeful perspective on my child’s future, and realized I, too, was probably autistic. 

Reading narratives of Autistic authors not only showed me that being autistic isn’t a tragedy, but also how mainstream experts and authors often advocate for approaches that are harmful to the Autistic community and its members. For example, while ABA is still a popular recommendation for autistic children, countless Autistic self-advocates have spoken out against the practice, recounting the trauma and harm they endured while subjected to the therapy. 

The first Autistic anthology I read was Loud Hands: Autistic People, Speaking. Within its pages I read personal accounts from ABA survivors who had their hands forcibly held down while they cried and screamed in agony and terror. I read about the atrocities autistic and otherwise disabled children and adults are subjected to at the Judge Rotenberg Center in Massachusetts, where electric shocks are administered to control residents.4 However, it is called “therapy,” uses accepted principles of ABA and is only used on the disabled, so it somehow escapes condemnation from the public, many medical providers, and even child and adult protective agencies. When ABA therapy was suggested again for our child, I politely said, “No, thank you.”

Instead, we focused on arming our child with self-advocacy skills. We removed the emphasis on spoken language and encouraged communication methods that were natural for them. We stopped engaging in any service, therapy, or “support” that had a goal of making our child appear more like other children. With every book I read, our family’s celebration of Autistic and neurodivergent pride grew. 

The narratives of marginalized and stigmatized peoples are far too often overlooked or sidelined in favor of authors from dominant society who position themselves as experts. Conversely, neurodiversity libraries center primary sources and elevate the stigmatized as experts on their own lived experiences. While the books and printed materials curated by most neurodiversity libraries are available elsewhere, a reader starting their search in a mainstream library may have to sift through hundreds of titles offering “scary” and “tragic” messaging before finding an affirming title written by an Autistic author.

By the time the younger of the two siblings was diagnosed with ASD in 2021, our family was firmly entrenched in a supportive, pride-filled Autistic community, thanks to our introduction through a neurodiversity library. By then young teens, the two siblings were developing as Autistic self-advocates, and presented at Autistics Present Symposium 2019: Essential Youth Voices.5 We founded our own neurodiversity library, North Central Washington Library for Education on NeuroDiversity (NCW LEND) in 2019 with the goal of providing support to our rural Autistic and neurodivergent community.6 When the diagnostic clinician suggested ABA therapy, I handed her a flyer from NCW LEND and invited her to learn. 

4. “Congratulations! You’re Autistic!”

It came as a surprise to absolutely no one when I was diagnosed in 2022. I received the news with joy and celebration. Although I had been self-identified and peer-identified for several years and found a welcoming home in the Autistic community, having a clinical diagnosis helped me receive accommodations I needed in my university studies. 

At the time, I reflected on all the books I read while seeking refuge from the heat and effects of Fire Storm 1994. I remembered how they painted autism as something to be feared—something so monstrous and awful I couldn’t even recognize myself in its description. I recalled the books I read a decade later, which prescribed the myriad of ways I needed to “fix” my child. It turns out they were all wrong. I realized then I had not checked out a book about autism from a public or mainstream library for years. Instead, I looked to neurodiversity libraries. 

Out of curiosity, I ventured to my local library to see the offerings on autism. While a few Autistic authors dotted the shelves, most of the books were similar or identical to those which had led me to believe autism was tragic and frightening, all those years ago. Certainly, it is not the fault of the library that such titles are notable or remain in demand: Non-autistic society is generally not educated enough to be Autistic-affirming, and non-autistic academics, experts and authors are generally better promoted, funded, and connected than their Autistic counterparts. The imperative, then, is to change the discussion surrounding autism and neurodiversity on a global scale through interconnected, grassroots efforts. Neurodiversity libraries respond to that call.

Libraries have always been a place of comfort and knowledge for me. Growing up, I didn’t fit in with my peers and was often the target of teasing, mocking, and bullying. To escape, I turned to books. If there was something I wanted to learn about, the library offered endless titles from which to educate myself. Some were incredibly helpful; some less so. I try to keep that in mind when I remember the books I read during my pregnancy and around the time of our first family diagnosis: Some books just miss the mark. If one is lucky, the truly great and insightful books outnumber the ones that pander to a less-than-critical readership. Unfortunately, that isn’t the case with books about autism.  

Often, mainstream books on autism stigmatize and pathologize autistic people by pigeonholing them into “functioning levels” or “severity levels,” suggesting they lack empathy, can’t communicate in meaningful ways, don’t have genuine human connection, or must be “fixed” or “overcome their autism” for their lives to be worth living. With such messaging, it is no wonder parents associate fear with the idea of having an autistic child. To be clear, I was terrified of autism and… I am autistic.

Today, I proudly identify as Autistic, with a capital “A,” connecting to the history, advocacy, and literature of my Autistic elders. Now, I congratulate people when they learn they are autistic because I know they have a welcoming, affirming community within which to find a home. Where pity and fear of autism once resided, there is now acceptance and Autistic pride. That is the transformative power of a neurodiversity library.

5. Custodians of Autistic History and Culture: Augmentative, Not Alternative

The beauty of neurodiversity libraries lies in their ability to carefully curate, vet, and restrict their collections, unlike public and mainstream libraries, which may not have such restrictive ability. As societal and scientific perspectives change, materials may lose relevance or accuracy but remain on shelves of larger libraries. The Autistic community holds the sharing of information as a core value and if a previously-vetted author or title becomes problematic or outdated, the community will absolutely “call it out.” Networking groups like Neurodiversity Librarians on Facebook often serve as hosts for community discussion in such cases. 

Like larger library systems, neurodiversity libraries form networks and coalitions to maximize and share resources but unlike public libraries, most neurodiversity libraries are volunteer-led and self- or community-funded. Both types of libraries can serve as places of both literal and metaphoric community but, while mainstream libraries are usually fixed in locale with buildings, neurodiversity libraries can be innovatively malleable and fluid: they can shapeshift to fit the needs of the communities they serve. Some offer book delivery and pickup, some host freestanding “little free library” boxes, some do mail-order lending, some have scheduled lending events at different locations, some partner with established businesses, and others raise funds to purchase neurodiversity-affirming books to be donated or given away.7

Neurodiversity libraries, then, should be viewed as a welcome augmentation to mainstream libraries, rather than a replacement or alternative. To use an analogy of art collections, mainstream libraries can be viewed as large-scale museums offering to the public the opportunity to experience various works of art from multiple periods and movements in diverse mediums. There, one can find oil paintings, acrylics, watercolors, and charcoals alongside sculptures of plaster, glass, marble, bronze, metal and alternative materials. However, when a patron expresses a need or desire to learn more about Pop Art created specifically between 1958 and 1963, an astute docent might opt to direct the patron to a small, intimate, off-the-beaten-track collection specializing in the requested works. In the same way, public and mainstream librarians can help patrons find neurodiversity-affirming materials by collaborating with and recommending neurodiversity libraries. Libraries seeking to expand their offerings of neurodiversity-affirming materials and events may also consult with neurodiversity librarians for recommended titles and activities. 

Both mainstream and neurodiversity libraries seek to build community and further knowledge while working toward equity, access, and inclusion. Neurodiversity libraries, however, are uniquely qualified to focus on Autistic and neurodivergent pride and act not only as stakeholders but as rightful and appropriate custodians and curators of Autistic culture and history. When public libraries are willing to partner with and support us or recognize and promote us as authorities on neurodiversity, we can help to create a world where autism and other neurodivergent conditions no longer evoke fear or pity.

In such a world, a young parent-to-be will not stay up all night crying, worrying their baby might be autistic. Instead, that parent will know a thriving community waits to embrace them, promising to mentor them in Autistic culture, tradition, history, and pride.

Wondering where to start? Lei Wiley-Mydske offers the following short list of current and long-time favorites from the Ed Wiley Autism Acceptance Library:

  • A Day With No Words by Tiffany Hammond, illustrated by Kate Cosgrove

    A beautifully written and illustrated book featuring a non-speaking autistic child. Written by Tiffany Hammond of Fidgets & Fries. Perfect for young kids!

  • We Move Together by Kelly Fritsch, Anne McGuire,  illustrated by Eduardo Trejos

    A wonderful celebration of human diversity. Great for young kids and includes a glossary of terms to deepen understanding.

  • I Will Die on This Hill by Meghan Ashburn and Jules Edwards

    This book is for anyone in the autistic community: autistic adults, non autistic parents, professionals and anyone who seeks a better understanding of what autistic kids need from the people in their lives! This book doesn’t shy away from talking about the difficult subjects that can divide parents and autistic adults, but provides solutions and a path for a better world for all of us.

  • Sincerely, Your Autistic Child edited by Sharon daVanport, Morénike Giwa Onaiwu and Emily Paige Ballou
    A diverse collection of autistic voices sharing their experience and wisdom about the best ways to support, empower and help autistic children thrive.

  • Crip Kinship: The Disability Justice & Arts Activism of Sins Invalid by Shayda Kafai

    This book explores the revolutionary work of Sins Invalid, a San Francisco based performance project. Each chapter is based on one of the ten principles of disability justice.

  • Typed Words, Loud Voices edited by Elizabeth Grace and Amy Sequenzia 

    An anthology of non-speaking and minimally speaking autistics who use AAC as a primary form of communication.

  • The Person Who Arrives: Connecting Disability Studies and Educational Practice for Teachers, Parents, and Others by Leah Kelley Ed.D.
    A favorite that invites people to rethink what they think they know about disability not just in the classroom, but in our day to day lives. Written by Leah Kelley of 30 Days of Autism.

  • Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-Samarasinha
    A classic book on the disability justice movement and creating inclusive and sustainable communities.

  • Talk to Me: What educators (and others) can learn about de-escalation from hostage negotiators by Emma Van Der Klift
    This is the book for anyone dealing with “challenging behaviors.” With a focus on empathy, respect and creating authentic relationships to truly help people experiencing crisis. This is a book that every parent and every person who works with neurodivergent people needs to read.

  • Ask and Tell: Self Advocacy and Disclosure for People on the Autism Spectrum edited by Stephen Shore
    A great classic resource to build self advocacy skills for autistic people!

  • Knowing Why: Adult-Diagnosed Autistic People on Life and Autism edited by Elizabeth Bartmess
    For many marginalized people, late diagnosis/identification is not that unusual. This is a collection of essays of other late diagnosed people navigating life and self discovery.

A female-presenting person with short pink hair displaying the American Sign Language sign for "I love you"
Christina-Marie "CM" Wright is the autistic, genderqueer founder of North Central Washington Library for Education on NeuroDiversity (NCW LEND). At last count, they are the parent of eight kids and have fostered several more. Often, they are cramming for exams as they approach a 2024 graduation with dual Bachelor's of Arts degrees in Psychology and Deaf & Sign Language Studies with minors in Accessibility Studies and Anthropology. In their very rare spare time, they enjoy kayaking the Columbia River with their spouse, cooking vegan cuisine, and increasing their coffee consumption... just in case it ever becomes an Olympic category.
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