Some rules for thinking about autism
Laying out guiding principles to steer this ship
Until now, I’ve never written publicly about my life, society, or medical research and science. It feels like one shouldn’t just waltz into such weighty topics, but here I am, diving in.
Some rules of the road seem appropriate; guidelines for approaching this work, especially as it relates to autism, a complicated subject that deserves a tender approach.
It so happens that I’ve formed some firm beliefs in the course of examining what autism means for me and society. These principles, I realize, can form the basis for a thoughtful approach to my writing here.
Publishing these guidelines will keep me accountable and enable me to reflect on them later, once I’ve carved my place more firmly into the ground. Do they hold? Are they enough? How are they influencing my work?
Here, then, are the principles I’ve come to believe in—anchors for the writing I’ll be doing in this space, and tools for thinking clearly as I go.
Principle 1: We all (autistic and non-autistic alike) have the same traits, just to different degrees
We’re all more alike than we are different. Although certain things are exaggerated in autism, nothing (as far as I can tell) is autism’s exclusive domain. We don’t own anything (just like the reverse: people who don’t have autism don’t own their traits either).
Case in point: Deep research. Profound investigations of a topic are a telltale sign of autism. In her book The Autism Brain, Temple Grandin attributes this to a focus on the “trees” instead of the “forest.”
However, exhaustive research is not exclusively autism’s domain. I couldn’t put it any better than Mariam Mahmoud’s piece “The Lost Art of Research as Leisure,” which persuasively argues that “research is not a rarefied academic exercise. It is a fundamentally human activity, an adventure, a craft, a conviviality that assembles culture.”
The same case can be made for other autism-aligned traits: the desire for routine, orientation toward patterns, social discomfort and awkwardness, amassing collections, and literal thinking. In autistic people, these traits can be pronounced—but they exist, in varying ways, in everyone.
Viewed this way, the autism spectrum is one segment of the human spectrum.
I don’t say this to discount autism but to remind myself that these things are part of the human experience, which we all share.
Principle 2: My autism is not their autism
Conversely, each of us is a world unto ourselves. Like Whitman, we all “contain multitudes.” As someone writing publicly about autism through the lens of my own experience, I must take care not to speak for anyone but myself.
There is so much diversity within autism. There’s the famous spectrum, which mostly gets at how pronounced the overall condition of autism is. Still, there are other layers of the spectrum, too. The category of sensory issues, to take one, manifests in so many different ways. Some people are overwhelmed by bright lights or loud noises; others seek out intense sensory input, like strong flavors or constant movement. Some can’t tolerate tags in clothing, while others barely notice pain.
So, not only are there differences in the overall severity of the condition, but also in the details.
Why does this matter? It matters because erasure is soul-crushing.
If I suggest that my experience is exemplary, I’m taking something away from those who have entirely different experiences from mine. In a way, I’m discrediting them while at the same time challenging them to declare themselves and stake their own territory.
Adrienne Rich writes of erasure in Blood, Bread, and Poetry: “When someone with the authority of a teacher describes the world and you are not in it, there is a moment of psychic disequilibrium, as if you looked into a mirror and saw nothing.”
And bell hooks writes of the same with biting irony in marginality as site of resistance: “No need to hear your voice when I can talk about you better than you can speak about yourself.”
These are not dynamics I want to support.
A conflict is currently broiling within the community about how to view autism. For every person who argues that autism is not a disorder or disability, there is a person who feels disabled by the condition. A person who feels they are missing out on essential elements of life.
At first, I was drawn to the idea that autism isn’t a disorder, but a cognitive profile. I have a job, a marriage, children. Autism has brought challenges, yes—but also strengths. That framing, as something descriptive rather than limiting, made sense to me. But I’ve come to see that as a narrow view, shaped by my own privilege. Many autistic people long for deep relationships, meaningful work, or independence, and find those things painfully out of reach. For them, I imagine the rhetoric of “difference, not disability” can feel like a double erasure.
Within all marginalized groups, there will be people with more and less privilege. Autism is no different. There is an inequitable distribution of resources among us, and justice and fairness demand that we recognize it.
Principle 3: I aim to hold multiple truths at once
A research and writing project about autism could easily tempt me to claim definitive answers. I’m at risk of trying to attain and defend a position of authority on the topic. In some ways, that’s the easier route: it's tidier to profess a solution to this or that quandary and move on.
The harder task is resisting that impulse. Nothing about, or within, the human mind is simple. We need only look at our struggles within ourselves. We think we know who we are, and then life shows us we don't. We give voice to this complexity when we weigh an issue and say we’re of “two minds.” Conflicting versions of ourselves and the world inhabit the same space.
Cognitive profile and disorder. Beauty and pain.
Karl Popper, a leading 20th-century philosopher of science, cautioned against certainty in Conjectures and Refutations:
Intellectual intuition and imagination are most important, but they are not reliable: they may show us things very clearly, and yet they may mislead us. They are indispensable as the main sources of our theories; but most of our theories are false anyway. The most important function of observation and reasoning, and even of intuition and imagination, is to help us in the critical examination of those bold conjectures which are the means by which we probe into the unknown.
So, although I’ll propose ideas and suggest answers, I want to avoid orthodoxy. Offering a hypothesis is a good way to deepen inquiry, but no investigation can be truly completed in this realm. It can only be examined, and then put back on the shelf, to be picked up again another day.
Principle 4: Don’t be afraid to show joy
This one is highly personal. I’ve always been uneasy with expressions of happiness or pride when they involve me. I feel moments of profound exhilaration but struggle to acknowledge them—even to the people sharing those moments with me. Receiving a heartfelt compliment makes me want to hide. My instinct is to downplay joy, and I don’t fully know why. Part of it, I think, is a desire not to seem frivolous. Part of it is simply a natural lack of bubbliness. But something deeper is at work, too, and I haven’t figured it out.
Still, I know this: I don’t want that discomfort to follow me into my writing.
So much of life is hard. It sometimes feels easier to dwell there. But I want to speak fluently about the opposite, too: beauty, sublimity, joy.
Jack Gilbert’s poem “A Brief for the Defense” gives voice to this aim: “We must have the stubbornness to accept our gladness in the ruthless furnace of this world. To make injustice the only measure of our attention is to praise the Devil.”
I want to notice what is worth celebrating, not just intellectually but emotionally, and I want to allow myself to celebrate it.
These pillars don’t map out a writing plan. Much like autism itself, they provide a framework, but they don’t dictate an outcome. What they do offer is a lens for thinking and writing about the topics I’ll cover in Strange Clarity: belonging, identity, biology, evolution, and history, both personal and collective.
They’re the rudders I’ll use to steer this boat—steadying me as I navigate uncertain waters.