Notes from the Spectrum, Part IV: Q & A

Notes from the Spectrum, Part IV: Q & A

May 12, 2016

If you’re new to the Notes from the Spectrum series, check out: Part I: Alienation and Symbol Part II: Riding While Autistic Part III: Speaking the Words

I made a new friend on Twitter, a pastor in Boise. He recently concluded that not having read much poetry represented “a defect” in his “education and soul.” I was amazed at this remark, so poignant and unusually attuned to human flourishing; I was thrilled that anyone, especially a pastor, might think this way. (For much of my church life, if there were artists at all, they were, like me, on the fringes, as far from the pulpit as possible. So I have a Special Reserve of love and respect for that rare species: the pastor shaped by God’s truth as found in literature, music, theatre, film, visual art.)

Some weeks later, Brian and I began messaging about autism. He had read this Ruminate series and wanted to learn more, so he asked me some great questions, a few of which I will attempt to answer here. This interaction, and Brian’s generous spirit, have truly been a gift; I wish to reply in kind with the gift of carefully crafted responses. Here’s the first question:

Are the effects of autism constant or varied? As in, do you feel as you described in the post in all conversations or social situations, or does it fluctuate? The effects are constant but, for me, not at maximum intensity every moment. They can be thrown into maximum intensity instantly, though, through any number of factors I can’t control: a change in temperature or lighting, an unexpected turn in the conversation, a crowd suddenly showing up where I am…. But usually the kind of experience I described in the first post does not manifest at full strength in every conversation, every day. However, there’s a saying one hears in the autism world a lot, and it rings true here: “If you’ve met one autistic person…you’ve met one autistic person.” Autism varies a great deal from one person to another, so my experience is merely that—mine, and not indicative of anyone else’s.

My own symptoms are best managed when I feel safe. I’ll elaborate at length as I respond to the next question.

Social situations are clearly difficult. To what extent do you desire them? Are they something you wish for, despite the difficulty, or would you rather avoid them altogether?

This is a complicated question that will take some working through. It’s a spectrum, and certainly some autistic people spend a great deal more time alone than others. For me, I need and want friendship, communication, social interaction, affirmation, and fun the same as anyone. It’s just that my participation in those realms is challenging, and I do tend to prefer it in small doses. But generally social interaction is not a question of if, but how.

The central concern for me is always: do I feel safe?

I’m talking about a foundational safety. Of course, everyone needs to feel safe in order to flourish relationally—we all understand some form of Maslow’s hierarchy of needs—you can’t get to real personal growth, creativity, spontaneity, and “self-actualization” without a basic sense of security. The pyramid is, I think, amplified dramatically for many of us on the autism spectrum.

I was recently re-reading the opening frame story of The Thousand and One Nights for a class, and I was struck by the declaration King Shahryar makes when he discovers his wife’s infidelities. This is the very first line he utters to his brother:

“No one is safe in this world.”

He had the rug pulled out from under him. It seems that the removal of a safe, predictable environment (combined with pride, fury, madness, or other factors) is what catalyzes one of the most violent, misogynistic rampages in all literature. You know the story: the king goes on to “marry” a virgin each evening, then have her murdered in the morning. This is his insane version of taking control and bringing about order. Until the genius Scheherazade breaks the game, it plays out with deadly results for many nights, a consequence in dramatic and ever-increasing disproportion to the inciting incident.

(I hope it’s obvious that I’m not saying autistic people are prone to violence. I’m merely pointing to an example from literature that demonstrates how a lack of safety and security can thoroughly disorder the soul.)

Scheherazade’s brilliance as a storyteller, of course, is not just her “cliffhanger” technique, but rather that, by the very act of carefully developing a narrative arc, she is restoring meaningful order in a situation that is extreme, black-and-white. Her stories re-introduce nuance, humor, and an appropriately complex moral dimension to an environment in desperate need of a baseline of safety. Through the process of storytelling, she saves herself, all the young women of the kingdom, and ultimately the maniacal king as well—not merely staying his hand but in fact, it could be argued, healing him.

It’s a profound exchange, and instructive to me. The routines I cling to are like Scheherazade’s stories, assuaging my fears and bringing about order.

If I’m out of my beloved routines, I will likely be off in any ensuing communication. I’m with people all day, and many of those interactions cause stress (both good stress and bad stress). I like to come home and unwind by watching a sports talk show or a food show, alone. I take off my suit coat, replace it with my ragged twenty-year-old flannel shirt. I turn off the overhead light—too like the fluorescent lights of my classrooms—in favor of the muted glow of the end table lamp. I account for the little piles of clutter, inevitable in a bustling house with children. I grab a snack and cold drink and put my feet up on the coffee table. I try to minimize interruptions.

If I can’t create this scenario or some approximation of it for thirty minutes or so, I will not feel safe. If I can preserve this routine in some form, I will probably do okay if there’s an event on the calendar that night. But I need to live out my small story of comfort, order, and safety first. (In my rigid reliance on routines, I sometimes feel like Tevye in Fiddler on the Roof: “And how do we keep our balance? That I can tell you in one word: tradition!”)

I feel safe (especially around new people) when I’m at a place I’ve been, and enjoyed, before—maybe a restaurant where I know the food is good and know where I like to sit and know where to park. This is especially relevant if the situation includes unwritten rules of propriety, as many situations do. I remember attending my first classical music performance in college. I had no idea that one piece of music might contain multiple movements, and that to clap between movements was a faux pas marking you as green, uncultured. One had to wait for the entire piece to be completed before clapping. Suddenly I was on edge, wondering if there were other rules. I could no longer be in the moment, enjoying the company of friends and the music itself. I didn’t feel safe. It’s a small thing, but that’s the sort of stuff that induces stress and can cause me to shut down.

I feel safe when an environment is more or less methodical, because of my hypersensitivities in processing input such as lighting, noise, and the overall tidiness of a space. I feel safe when I’m in a group with one or two people who know me really well, people I can turn to and know I’ll be understood. I feel safe when I’m in a group with one or two people who are perennial winners at the social game, who take the pressure off me to perform, to be funny, to correctly intuit which layer of irony we’re on now and never fall back a step. (However, there’s a thin line between the socialite who makes me feel comfortable and the extrovert who dominates—the latter makes me feel unsafe, unhappy, and angry almost without exception.)

I feel safe knowing how long an event will go on for. I like to understand what time people are coming and leaving. I like to know, if possible, who will be there and even how people will be dressed, if that’s relevant. Essentially: anything I can know ahead of time will help. Before any type of new event, you’ll see me online, checking the website of the place, any existing reviews that might offer clues into the experience, a map of how to get there, and whatever bits of additional information I can gather.

In a sense, I live a double life. While there are instances in which I can be fully present, I’m always working to stay attuned to my own physiological and emotional responses moment by moment, ensuring my safety—or if safety cannot be attained, managing my increasingly intense symptoms until I can get out. The people I envy are often not the smartest or most accomplished; no, the objects of my amazement are the ones who can do the impossible: be a little carefree, happy-go-lucky.

I would give a great deal to possess a tiny fraction of such a temperament.

Here’s another question I appreciated:

If we were speaking face to face, how should I adjust for autism? What would best enable you to enjoy the conversation instead of being overwhelmed?

I’ll answer in two ways—the first one is fairly straightforward, I think, while the second is more involved.

My first reaction is this: please include me. Don’t mistake my fidgeting and lack of eye contact for disinterest. Many neurotypical/allistic people have what I’ve come to consider a terribly ableist habit, and I’ve been on the receiving end many times. It goes like this: when there are several of us in conversation, the speaker looks to other allistic people in the room for traditional affirmation, and once he or she gets it, I get completely cut out. The other allistic folks intuit the proper moments for eye contact, and provide it for the speaker. I do not. And as soon as I don’t, the speaker begins addressing only them, never looking at or including me again, even though I’m sitting right there doing my autistic best to show my interest: leaning in, nodding, making sounds of approval and interest. But since I don’t make and sustain much direct eye contact, the person disregards everything else I’m doing and ignores me. It’s very hurtful and I usually just end up leaving.

Please don’t expect everyone to play by neurotypical rules of engagement. We don’t; we can’t. Don’t punish us for it. Instead, consider extending some grace—meeting us halfway. We could sure use it. Though we might look “normal,” many of us feel wholly Other every day.

That’s a good segue into the second part of my answer. Speaking of extending grace: it would be tremendously helpful if more people took an interest in learning about the experience of autism. I would be thrilled, for example, if people began to consider the idea of neurodiversity.

It is quite new, and I’ve barely begun to shape my own thoughts on it, but I think it’s a useful paradigm and highlights the inherent dignity of the autistic mind. The neurodiversity model, in a nutshell, embraces the differences made possible by neurobiological distinctions, viewing autistic brain wiring as a naturally occurring variation and even a potential asset rather than always and only a liability. This view can help eliminate some of the stigma attached to autism and cut into ableist notions of superiority.

Thomas Armstrong, Executive Director of the American Institute for Learning and Human Development, sees potential for neurodiversity to help create social transformation. He writes:

The concept of neurodiversity provides a paradigm shift in how we think about mental functioning. Instead of regarding…portions of the American public as suffering from deficit, disease, or dysfunction in their mental processing, neurodiversity suggests that we instead speak about differences in cognitive functioning. Just as we talk about differences in bio-diversity and cultural diversity, we need to start using the same kind of thinking in talking about brain differences. We don’t pathologize a calla lily for not having petals (e.g. petal deficit disorder), nor do we diagnose an individual with brown skin as suffering from a “pigmentation dysfunction.” Similarly, we ought not to pathologize individuals who have different ways of thinking, relating, attending, and learning.[1]

Armstrong comments further that “the human brain is more like an ecosystem than a machine,” a metaphor that can broaden the way we think about neurodiversity. He also acknowledges the limits of a neurodiversity paradigm, saying plainly that “success in life is based on adapting one’s brain to…the surrounding environment,” and that “This means a dyslexic person needs to learn to read, an autistic individual needs to learn how to relate to others socially, a schizophrenic individual needs to think more rationally and so forth.”

While some may disagree, I’m drawn to this balanced view. I will continue learning how to make choices that can help me manage and even leverage my autism, honing its positive facets and minimizing situations that create disturbances in a world run by and for neurotypicals. But I would like to be better understood.

Those who want to help can read about autism and gain awareness of living in our world with significant neurobiological differences. Check out some of the important newer books: Steve Silberman’s NeuroTribes, a New York Times bestseller and winner of the 2015 Samuel Johnson Prize for non-fiction, or Barry Prizant’s Uniquely Human. Especially read blogs, articles, and books by people who are actually autistic; many describe diverse experiences from the inside, with great articulation, providing an invaluable resource into what autism is and means.

Brian ended our last correspondence with remarks which were deeply encouraging, and provide a great example for any fruitful conversation. He wrote: “Thanks for writing these essays; for being brave. I found them very helpful. I don't have much exposure to autism, but I want to understand. Also, maybe these are not even the right questions. Please forgive me if they're not, and help me ask better ones.”

I frankly feel honored to be asked anything at all, and I hope I was able to shed some additional light on my experience of autism.

Many thanks to Brian for sparking this latest installment in an ongoing conversation. Many thanks to Ruminate for hosting it. And many thanks to you if you’re reading this. I’m happy to say that these essays, along with a number of others, are forthcoming in my next book, from Cascade; it will be called Notes from the Spectrum: On Faith, Community, Poetry, and Autism. Stay tuned.

[1] Armstrong, Thomas. "Neurodiversity:  A Concept Whose Time Has Come by Dr. Thomas Armstrong." Neurodiversity. American Institute for Learning and Human Development. 30 Apr. 2014 <>

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