On the Spectrum

Autism, Faith, and the Gifts of Neurodiversity

Bowman, Daniel, Jr.

• Publisher: Brazos Press
• Year: 2021
• ISBN:
  9781493431120
• Topic: Teología y religión
• Subtopic: Religión

2022 Book of the Year Award, Academy of Parish Clergy Nearly everyone knows someone on the autism spectrum, whether it's a niece or nephew, a student in their classroom, a coworker, or a sibling, spouse, or child. One in 54 children has autism, according to the CDC, and autism is reported across racial, ethnic, and socioeconomic groups. Yet most of what people think they know about autism is wrong. On the Spectrum debunks myths with a realistic yet hope-filled deep dive into the heart, mind, and life of a Christian. Daniel Bowman, a novelist, poet, and professor, received an autism diagnosis at age thirty-five after experiencing crises in his personal and professional life. The diagnosis shed light on his experience in a new, life-giving way. In this captivating book, Bowman reveals new insights into autism, relationships, faith, and the gift of neurodiversity. Rather than viewing autism as a deficiency, Bowman teaches readers--through stories of his heartbreaks and triumphs--authentic ways to love their neighbors as themselves, including their autistic neighbors who are fearfully and wonderfully, if differently, made.

Foundations

The potential is great for the neurodiversity movement to create significant social transformation. . . . Neurodiversity brings with it a sense of hope that all individuals, regardless of how they read, think, feel, socialize, or attend, will be recognized for their gifts, and accorded the same rights and privileges as any other human being.

—Thomas Armstrong, “Neurodiversity: A Concept Whose Time Has Come”

Why You Should Read This Book (and How)

A Note to Neurotypical Readers

Thank you for meeting me here, for wanting to learn more about neurodiversity and people on the spectrum.

When you read an autistic memoir, you’re not just getting an account of one life or gaining specialized knowledge about a tiny subsection of the population. You’re learning about what it means to be human. You’re learning about 1 in 45 people: friends, family, coworkers, children in school with your kids (or, like me, your kids’ instructors), someone at church, and folks you encounter along the way—engineers and scientists, artists and writers, people who have helped shape our world.1 You’re learning how to love your neighbor as yourself. That’s really the core of this book.

The Importance of #OwnVoices

In general, there are two kinds of nonfiction about autism: clinical books by researchers and doctors, and memoirs. The clinical books usually center on supporting autistic children, with autistic adults either entirely in the shadows or mentioned in passing. The memoirs are mostly written by parents of autistic kids, and only rarely written by autistic people. Memoirs tend to focus on helping neurotypical readers understand the autistic experience, or even just the experience of the caretakers of autistic children.

On the Spectrum is not quite either of those. It is, I hope, a book for a new era in thinking about autism, one increasingly defined by attention to diverse autistic voices (“Nothing about us without us,” as the rallying cry goes)—#OwnVoices—and a greater comprehension and acceptance of the neurodiversity paradigm. The social media hashtag #OwnVoices was created by Corinne Duyvis, a Dutch autistic novelist of young adult books, to distinguish between books authored by someone in the same minority or disability category as the protagonist. This was a necessary step for autistic writers, as most books celebrated for their portrayals of autistic characters—for example, runaway bestseller The Curious Incident of the Dog in the Night-Time or the 2010 winner of the National Book Award for Young People’s Literature, Mockingbird—are written by non-autistic authors.

Let’s take a step back for a moment and consider that point: can you imagine another people group for whom that situation would be acceptable? Think, for example, if nearly all of the foremost texts of the Black American experience—the novels, memoirs, poems, and movies we teach our children—were written by white authors. It has been, thank God, a long time since we were in that situation. It would be unthinkable now. Or what if our most celebrated women characters in all of fiction were written by men? Also, thank God, unthinkable. No one would stand for that in the twenty-first century. Yet when it comes to autism, we’re still giving out major awards to people who have never lived our experience but attempt to represent, perhaps even exploit, us.

Now you understand, I hope, why this book is needed. I’m tired of being spoken over by people with neurotypical brain wiring. You want to know what it’s like in here? They can’t tell you. I and my fellow autistic writers can speak for ourselves.

Full Immersion

Most of the essays in this collection touch directly on autism, while others enact my autistic experience more subtly through reflections on family and identity; the relationship between art and Christian faith; teaching, learning, and living in community; books and storytelling; and ordinary life in Middle America. This, too—this scope of the everyday—is critical.

Telltale signs of my autistic brain reveal themselves in many ways. Have you ever moved to a different region of the country? Did you read twenty-plus books about that new place because the move represented a dramatic upheaval of nearly impossible magnitude? Probably not. But that response is not unusual for an autistic person dealing with change. The essay “Living Maps” highlights the importance of such obsession in service of structure and routine for autistics.

Moving from the Northeast to the Midwest required my learning a whole new social system of manners and expectations; weather patterns; terrain and topography; a new job at a new university teaching new courses to a kind of learner who was also new to me; and of course new colleagues, friends, and acquaintances. The support available in reading the literature of place became a necessity—much more intricate than an intellectual exercise or gesture of goodwill toward the region.

So: please suppress the urge to skip ahead to the “more autistic” parts of this book. Every essay in the book is thoroughly autistic! More importantly: there are no shortcuts to learning how to love your neighbor. There is no list of action items, and there is no saying, “Just tell me what to do.” What you can do is inhabit the whole story—and see the autistic heart, mind, body, and spirit at work in both the profound and the mundane.

Let me invite your attention another way.

As codirector of a national literary conference, I’ve booked many writers of color to speak at my campus. Most of them said to me, “Please don’t bring me in just for another diversity panel.” They followed up by telling me something they love and are good at but are never asked to speak about: French cuisine; poetry about pets; the history of vampire movies.

Asking them to speak only about race is telling them that I want to use them. In fact it’s saying I have a very limited use for them. This is the opposite of honoring their full humanity, the imago Dei, including the work, and play, they’ve chosen for themselves.

Tokenization is a form of racism. Reducing an autistic person to bullet points is a form of ableism.

This is a memoir, a story of a life, and life rarely conforms to simple takeaways, no matter how badly we might want them when facing complexities beyond our grasp. Attention is the form of love called for here. Or let me borrow a strong symbol from my Baptist years: full immersion is what I’m asking for. Come down to the river to pray.

Autism and Neurodiversity

The phrase “the gifts of neurodiversity” appears in the subtitle. Neurodiversity’s gifts do not form a discrete list. I think they are ways of being, of approaching our days; they are lenses through which the autistic person sees and feels the world uniquely—lenses that can lead to helpful contributions to culture. In my case, my autistic brain wiring leads me to see storytelling and poetry and teaching and learning and worshiping God in ways that are different from what most readers will be accustomed to. I hope you’re open to exploring those ways alongside me, wherever they lead.

Neurodiversity may in fact be a new idea for some readers. It’s not a scary or difficult concept; it simply means that there are different kinds of brains, different operating systems (OS) that run different people, to use a common, if simplistic, image. There’s a neurotypical OS, which means that the brains of people in that group are similar, within a certain range. They are highly diverse in many aspects, and so they will function differently and yield different results, making for unique individuals. However, neurotypical brains are similar enough overall that the outcomes—neurotypical peoples’ behaviors and actions and language—will mostly be considered “normal.”

Then there’s a neurodivergent operating system. It will result in people on the spectrum functioning in the intellectual, emotional, social, and physical realms differently from neurotypical people. Our actions and behaviors, then, should not be seen in light of the absence of neurotypical traits but instead the presence of autistic brain wiring.

When I talk about the pathology model or paradigm of viewing autism, I mean seeing an autistic OS and viewing it, and the results it produces, as deficient because it’s not a neurotypical OS with neurotypical results. A laptop that runs Windows is not deficient just because it’s not Mac OS, or vice versa; it’s just a different operating system that functions in different ways. Overall, many of the needs of the average user—word processing, photo editing, web surfing, online collaboration—can be achieved by either OS, and even by other, more obscure operating systems.

So it is with neurodivergent persons: we have most of the same core features and bugs as anyone else. Our autism itself is our OS, not a bug.

Autistic brain wiring occurs naturally, not through insidious means like vaccines gone wrong or bad parenting. And it occurs in about 1 in every 45 people, regardless of race, ethnicity, culture, gender, and other factors. It’s not true that there is “more autism than ever before”—there’s not more than ever. It’s that medical and psychology communities have grown better able to recognize and correctly diagnose it. Autism is simply more visible as a direct result of that knowledge.2

A neurodiversity paradigm asserts the basic fact that autism doesn’t need to be fixed; it simply needs to be understood and accepted. This is important, because people who see it as needing to be fixed often put their autistic kids in tenuous situations like applied behavior analysis (ABA) “therapy.” They often believe that their child needs, and will get, a new operating system—that the therapist will, if all goes well, replace the autistic brain wires with a neurotypical OS.

This kind of thinking is frankly foolish and deeply harmful. Many parents are scared when their kids begin in infancy or childhood to show common traits of autism; for example, self-regulatory behaviors, or stimming. Maybe they repeat a comforting phrase in an unusual tone while flapping their hands. Or maybe it’s worse—maybe there are meltdowns that threaten harm to the child or others. The parents freak out and send their kids to ABA, assured by the practitioners that the therapy will stop those behaviors and make their child act “normal.” A stated goal of ABA is to make autistic children “indistinguishable from their peers.”

As the saying goes, be careful what you wish for.

ABA doesn’t change an autistic into a neurotypical—it just teaches them to act neurotypical so they won’t be punished. There are much healthier ways of accommodating an autistic person’s differences and supporting them toward integration into society than the rewards-and-punishment system that is ABA. It’s like conversion therapy for LGBTQ teens. It does not change their orientation and in fact inflicts lifelong trauma on most people who are subjected to it. Conversion therapy has been largely discredited by the medical community.

We are still mid-journey on the ABA front: many doctors and mental health experts do not know any other course of action, and ABA has yet to be supplanted by something healthier and widely recognized. Many doctors still recommend it to families searching for help. Universities training teachers and special education professionals still teach it.

One reason I wrote this book is to take part in leading from the inside. This is a case where you want to weigh medical advice with the hundreds of terrible stories told by autistic people themselves. I personally know many autistic adults who carry awful wounds from ABA, from therapists who punished them for stimming and other (normally) harmless behaviors that in fact—under the autistic OS—have purpose, meaning, and even richness. ABA causes trauma. Autistics don’t need any more trauma than what we already attain from daily navigating a social world built by and for people with neurotypical brain wiring.

Form: On the Look and Feel of Autistic Narratives

Although I’ve revised this book for coherence, th...

Table of contents

• Cover
• Endorsements
• Previous Books by the Author
• Title Page
• Copyright Page
• Contents
• Prelude
• Foundations
• Place
• Community, Worship, and Service
• Writing, Teaching, and Learning
• Family and Identity
• Spectrum Interviews
• New Directions
• Acknowledgments
• Notes
• Back Cover