On the Spectrum
On the Spectrum: Autism, Faith, and the Gifts of Neurodiversity
By: Daniel Bowman Jr.
“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.”
When I first saw this book, it caught my attention. I realized all I really knew about autism was mostly from movies/shows like Rain Man, Parenthood, or Big Bang Theory. But as Bowman points out in his awesome book, On the Spectrum, much of what is produced about/including autism is not created by or for autistics and tends to center around the neurotypicals’ experience and suffering.
To get a more complete and authentic look at what it can be like on the spectrum of autism, listen to autistic voices. He clued me in to the hashtag #OwnVoices which is applied to works authored or created by someone in “the same minority or disability category” as the subject matter.
This book is that. This is a collection of essays— a memoir—written by Daniel Bowman Jr.:
“What’s reflected in this book are signposts from an autistic poet who is a Christ follower, a progressive Episcopalian living in the Midwest, a husband and dad and teacher at a small liberal arts college.”
I found this book to be beautiful and vulnerable and really helpful in understanding autistics better.
“You’re learning how to love your neighbor as yourself. That’s really the core of this book.”
From an open explanation of his own diagnosis journey that brought clarity to his childhood to essays about misconceptions of autistics and things people do or say that are hurtful, to ways the church can better come alongside autistics, this book covers a lot of important things.
And, of course, Bowman is just one person on the spectrum and reminds us many times that he can only speak his own experience. To read this book is just the beginning. We must continue to hear more stories— allowing people their own dignity— and not make one person’s story definitive for the whole spectrum.
What is Neurodiversity?
Bowman advocates for a neurodiversity paradigm as opposed to the pathology paradigm.
The pathology paradigm is centered on the premise that autism is something in an individual that needs to be fixed or corrected and often utilizes the practice of Applied Behavior Analysis (ABA) therapy that is harmful for autistics.
“ABA doesn’t change an autistic into a neurotypical—it just teaches them to act neurotypical so they won’t be punished.”
The neurodiversity paradigm, on the other hand, promotes the idea that people can function out of different operating systems. Autism is not an illness, it is a different process of functioning. He likens it to Windows vs OS.
Autistics don’t need to be fixed, they need to be understood and accepted. We all have challenges we may need tools to help us manage, but that is true across the board.
I have read some reviews concerned that he is applying critical theory here. I assume they are referring to the discussion around ableism. There is a form of critical theory that rejects a standard society has deemed ‘normal’ and denies the idea that disabilities could be negative. Not just that a person should have worth no matter what situation they’re in— I think we all agree with that— but they denounce any medical professional trying to fix any disability. To correct a disability is to conform all people to society’s “superior” able-bodied people and is wrong. They also would say that any disabled person who desires medical treatment to fix their disability when it is possible has internalized their oppression. (Read more about this in Cynical Theories)
Though there is inclusion of autism in that discussion, I agree with Bowman that autism is not something to be fixed but to be understood. I do not believe to state this is to apply critical theory. I think it is applying wisdom and compassion. This is the same with Down Syndrome as well. The critical theory discussion does not belong here.
To sum it up:
“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.”
This graphic was shared by a friend on Facebook. I found it to be a good visual of how Bowman describes the differences in the way people function on the spectrum.
The Highlights
“What autistics need so deeply, just to function from moment to moment, seems often to run counter to what people need from us. Maybe we need structure and predictability at the very time the people in our lives need whim, impulse. Maybe we need to be alone when they long for companionship. Maybe our senses are overloaded when theirs are underwhelmed. It can seem like we’re acting unkindly, or worse; though almost always we’re just trying to survive in a world that was not made for the likes of us.”
One of the first takeaways for me was when Bowman explained that to use the phrase ‘person with autism’ is harmful to autistics. They prefer to be called autistics. To say ‘person with autism’ implies that they “have something” or are “dealing with something” which, per the section above, we already determined assumes there is something intrinsically wrong with them.
I was surprised by this. I always thought it was better to say ‘person with autism’ because to say “Daniel is autistic” feels like I am unfairly reducing Daniel to one aspect of his identity. Though my intentions were in line, I now know the correct terminology to use.
As the quote above states, the world is generally made for neurotypical people. It was really interesting to see Bowman’s perspective on certain social expectations. How nearly every interaction with others requires a lot of effort to ‘read between the lines’ of what people mean, what people are expected to do, say, or act. The sensory overload alone is one neurotypicals can never understand!
I’m not sure how we change the world in so many ways, but it definitely provides plenty of space to think about how we can help autistic people engage in a more comfortable environment.
When he talked about the challenges he faces in serving in his church, some of the points he made resonated with me, even as a neurotypical. For example, if he volunteers to serve at a pancake breakfast, he wants to know exactly what his job will be, what time frame, what is appropriate to wear, will he be expected to help clean up, is he expected to communicate with people and if so, about what, will anything else be happening at the same time, etc. He also brought up popcorn prayer— I find this uncomfortable too!
I was like- Right on! We do need to respect people’s time and willingness to serve by putting forth expectations and boundaries that allow people to understand their role, their goal, and know when they complete their commitment. I also understand the need for flexibility or spontaneity in certain situations, but I don’t think his points are a hard ask for a church to consider in accommodating autistics and frankly, a lot of other people, who need a comfortable environment.
I thought this was a beautiful statement he made:
“I have to count the cost, and because I do, I know what it’s doing to me, how it’s changing me, inviting me to transformation, to renaissance, to being born again over and over through each sacrament of service, each month, each year.”
Though he says no to a lot of things, when he does say yes, they impact him. And isn’t that what serving is about? It’s not about checking the boxes or having the longest resume. It’s about doing meaningful work that changes people. We give of ourselves for others. It is the heart that counts.
And as Christians, we should count the cost (Luke 14). The Christian life is one of sacrifice, exemplified by Jesus. Bowman may have to count the cost more often and more tangibly, but I think it draws him nearer to Jesus who understands and it reminds Bowman (and us) how much we really need the Lord.
Another important thing that stuck out to me was when he compared the list of characteristics you would find if you googled autism with a different list written by the Autistic Self Advocacy Network. He pointed out how the former was listed as ‘symptoms’ and worded in a negative way using terms like ‘difficulties,’ ‘troubles,’ ‘tendencies',’ and ‘outbursts.’
“How do you think it is to be autistic and be described in those ways? To have your everyday traits and habits, which you’ve been made to feel ashamed of in brutally harmful ways since childhood, described to every Google user around the world as “abnormal,” “inappropriate,” “lack[ing],” “disturb[ed],” “withdraw[n],” “self-abusive,” “poor,” and “odd”?”
The latter (list by the ASAN) he quoted in length in his book which was very good. You can tell that the phrasings do make a difference. You can read it linked here.
He also included a parody someone wrote describing neurotypicals’ habits as weaknesses that begins, “Neurotypical syndrome is a neurobiological disorder characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity…” It was humorous and affirmed Bowman’s point that autistics and allistics have differences but that doesn’t make them weaknesses. The way we talk about things matters.
Another comment he made was this:
“In response to a question like, “Should we play a board game now?” an allistic person might say, “Um, yeah, I mean, like, we totally could do that, I guess.” And you’re supposed to understand that, pretty much, no, that person is not enthused about the prospects of a board game. But I may be too stressed, or more likely my senses may be too overloaded, to pick up on the meaning of the nonverbal signals and evasive answer. I generally wish to hear just a friendly yes or no so it’s clear where people stand.”
I think all of society would benefit if people spoke with more clarity and less undertones. Just say what you want to say (obviously respectfully)! Evasiveness is annoying. I probably do it too. But how bout we don’t!?
The Gifts of Neurodiversity
“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.”
Autistics are stereotypically seen as geared toward math and science (think Rain Man). It’s not that that’s untrue, but it’s incomplete. Daniel Bowman Jr. is more of a creative.
“One of the reasons I started to write essays about autism is because I discovered that almost no one was writing from the perspective of an artist on the spectrum.”
The sheer volume of literary references in this book and his poetic voice speak to this. He wanted more to be written and shown by creative autistics.
He quotes a professor, Michael Fitzgerald, who “argued that certain features of [autism], such as persistence, singlemindedness, intelligence, and nonconformity, can enhance not just the analytical process, but the creative process as well.”
Bowman proves throughout his book that autistics see the world and people differently but we can learn so much from different perspectives and that really is a gift. Our God is a God of diversity and we worship Him when we recognize and dignify the differences he has created and grow with each other.
A Few Caveats
One thing Bowman commented on many times was the disrespect he felt when people took his lack of eye contact as disinterest or that he wasn’t listening and they would stop looking at him and including him in the conversation.
Autistics don’t feel comfortable making constant eye contact. I get that. And if I know someone is autistic I can put into practice to not ignore them when this happens, and autistics should expect that from me.
But if I don’t know someone is autistic, as a neurotypical, I do see lack of eye contact as someone who isn’t listening anymore. This has happened with friends numerous times and it does hurt my feelings if I’m telling a story and they stop looking at me. I usually just stop talking. No one wants to be ignored.
This will probably be an ongoing interacting challenge between autistics and allistics.
He talked about how bad storytelling is bad theology. He never named names for what Christian material he was referring to but he had some criticism— he says,
“I want to focus on the fact that bad Christian stories are prescriptive. Though they may contain characters and a plot, they exist not to discover or examine truth but to deliver a message. In that way they’re similar to propaganda used by oppressive regimes in times of war and genocide in attempts to control and manipulate people.”
I am really curious what books/movies he is talking about. I agree that there is some cringeworthy stuff out there, but to relate it to propaganda is a strong comparison that I would like to explore with more context. I wish he would have given titles, though I can see why he wouldn’t.
This wasn’t the purpose of the book and to me it doesn’t change my opinion of it, but he alluded to gender and sexuality in some essays that makes me think we may hold different beliefs about the Bible and gender/sexuality. I do not believe the Bible teaches that gender and sexuality is on a spectrum.
Final Thoughts
I am so glad I read this book. Sure, many of the literary references and quotes didn’t speak to me as much as they might to a lit-lover or a poet, but I gained a lot of insight and new ways of considering and caring for my neighbors.
I’m also excited to explore the #OwnVoices hashtag to see what else is out there!
I really appreciate his vulnerability in sharing the shame he carried and the feelings of guilt and failure he felt because he couldn’t participate in church the way others were. He wrestled with the Scripture about “bearing fruit” and worried that his saying no to so many things because of his mental health made him less of a Christian.
I struggled with those verses myself and lamented them here.
But I love how he points us back to grace:
“For it is by grace you have been saved, through faith—and this is not from yourselves, it is the gift of God—not by works, so that no one can boast.” Not by works. This is truly good news—gospel—for those of us on the spectrum, whose works can often be uneven. Others may be tempted to rest on their achievements, but we autistics are as likely to screw everything up as to produce a great outcome. Or sometimes we do both at the same time. No matter—our grace through faith is a gift, not from ourselves or the result of our works. This opens the door to do things according to the way our brains were made, according to, as the next verse says, “God’s handiwork.” We too can make culture.”
God asks us to be faithful and to trust him. It is not up to us to do all the work.
I would highly recommend this book to all people. For autistics, to feel heard and known and seen in ways society sadly doesn’t project, and for allistics to better understand and accept the complexities and differences in neurodivergent operating systems.
This truly is a book to help us love our neighbors.
Some last thoughts from Bowman:
“Learn about the spectrum, about sensory processing, adherence to routines, social interactions, special interests, stimming, meltdowns, and the rest. Then respect the complexities of individuals as you come alongside them.”
“Gentleness, kindness, sensitivity to the fact that the experience of another person may render their way of being in the world completely different from your own…”
“Grace is not merely transactional, but relational.”
**Received an ARC via NetGalley**
Pin this review to Pinterest!