This ostensible dichotomy has torn apart the autism community, forcing autistic people, their families, and their allies to choose between advocating for community, identity, and empowerment on one side, or funded support, resources, and legal protections on the other.
The darkness or the light
This grinding, ceaseless battle over the word "autism" and what it means to be autistic has thus far yielded nothing but frustration, fear, distrust, and, increasingly, despair. Autistic adults cannot trust a world that demands they hide their true selves everyday in order to succeed, or even just survive, while parents and caregivers of autistic people fear a world in which their support is the only means of survival.
Caught often unknowingly in the crossfire is the population of autistic adults who don't know, and who dare not discover, that they are autistic. They know that they are different. They may recognize their autistic traits (often from their children). But being labeled autistic is unimaginable. They can't even contemplate it.
And why should they? Why would they want to identify as disabled when they have worked their whole lives, often at great mental and physical cost, to fit in, to appear "normal".
This hidden autistic population struggles everyday to remain in the light while the darkness casts a long shadow over their lives.
In an extraordinary act of protest, University of Chicago philosophy professor Agnes Callard refuses to use the word autism when "coming out" as autistic in the New York Times. She refers to her autistic identity as simply "The Fact", and starkly illustrates the struggle between the two sides of autism:
The Fact makes me part of a group of people whose boundaries are amorphous; we do not all recognize one another, and even when we do, we are not sure what we have in common. You would like to manage this situation in a very specific way: First, carve off what you take to be the “most severe cases,” and find a cure that prevents any more of them from arising.
Second, assimilate the rest — people like me — as “normal,” or as normal enough, so long as you are sufficiently tolerant and accommodating. But I suspect all the tolerance and accommodation in the world won’t make me normal. Do we have to pretend that I am? Is that the condition on which you are willing to engage with me? And couldn’t a group of people have something in common even if “degree of suffering” isn’t that thing?
There are growing signs that the autistic community is reaching a point of capitulation with this choice between assimilation and suffering.
The last chapter of Sarah Kurchak's excellent, lyrical memoir, I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder, which explores the costs of assimilation through autistic masking, is titled "Damned if I know".
Callards ends her plea for empathy and understanding by informing well meaning would be allies:
You are really letting me down.
Damned if anyone knows what path forward is. When we are united only by degrees of suffering, the darkness is ascendant.
A false choice
But what if this choice between the "dark side" of autism, and the light that autistic people so desperately seek, yet can never seem to find, is in fact a false choice.
With the return of Star Wars in The Mandalorian, I have been the thinking about the metaphor of The Force, and the balance between the darkness and the light.
What do you see?
The island. Life. Death and decay that feeds new life. Warmth. Cold. Peace. Violence.
And between it all?
Balance. Energy. A Force.
And inside you?
Inside me, that same Force
And this is the lesson. That Force does not belong to the Jedi.
Finding the balance in autism
Autism does not belong to anyone, to disability and suffering or to neurodiversity and difference. Inside every autistic person there is both darkness and light. We have enabling traits that can balance our disabling ones.
I am beginning to believe that the only path forward for autistic people is to acknowledge both the darkness and the light of being autistic, and to seek the balance between.
Five years ago, I knew nothing of autism, but since my "awakening", I have been driven to embrace an "openly autistic" identity because I want to showcase my strengths, to prove what autistic people can achieve.
Already, we have the first representative elected to a state legislature who campaigned as openly autistic. We have an openly autistic actor playing an openly autistic character, who is not a caricature, on a successful sitcom.
I have my own ambition to be the first openly autistic executive of a Fortune 100 company, to demonstrate that autistic people can be successful leaders, that we can achieve everything that the stereotypes, stigma and bias insist that we can never achieve.
At the same time, I have resisted identifying as disabled. At times, I have fought it. I have railed against disability being the only socially sanctioned path to self-identifying as autistic. I have denied outright my own "dark side".
And yet, I am realizing now, disability is a fundamental part of who I am. Disability is the darkness without which there can be no light.
With the social model of disability, I might be tempted to say this is not my darkness, it is the darkness around me. But I think now this is only partially true. There are moments when, I now admit, I feel disabled in an some absolute sense.
This is not to say, at all, that disability is darkness. Rather, it's when we are in darkness that we feel the most disabled.
How then to seek this balance between acknowledging and accepting my autistic disabilities while embracing my autistic strengths?
"Autistic traits" instead of a diagnosis
The problem with "diagnosing" autism is that the diagnostic criteria describe how the world experiences autistic people, not how autistic people experience the world.
Instead, I prefer to talk about my "autistic traits", which are experiential, from my perspective, and describe how I uniquely experience the world.
Autistic traits are an inward facing view of the experience of being autistic, which opens the door to inclusion for the (very large, I suspect) population of adults whose autistic traits "may be masked by learned strategies in later life".
Autistic traits are everywhere, when you know how spot them. Autistically self-aware people can spot the pattern, without the intervention of diagnostics, even in fictional characters. We don't need Beth Harmon in Queen's Gambit to be diagnosed "autistic" to recognize her autistic traits. And we don't need her to be labeled to identify with her experience.
To explore this idea of seeking balance in how we describe and conceive of autistic experience, here is a declaration of my disabling autistic traits, which represent my autistic dark side, followed by my enabling autistic traits, which balance the dark with light.
Disabling autistic traits: Acknowledging my "dark side"
I wrote these for a blog post to come out as autistic at work, to help non-autistic colleagues understand my experience. I also wrote these to help people with autistic traits recognize their own experience.
Understanding social communication
With over forty years of careful study and tremendous daily effort, I learned how to simulate the accepted social behaviors of a non-autistic person. I do this every day, but at great cost. Autistic people sometimes refer to this as “masking”, which can have detrimental health effects, such as anxiety and depression.
For example, small talk is baffling to me. I wonder why we can’t just get to the point. How long do we have to talk about what we’re not talking about until we can talk about what we’re talking about? In conversations, I sometimes forget this and get right down to business.
Making eye contact, watching body language, listening to what’s being said, and maintaining the appropriate facial expression and socially acceptable tone of voice, all at the same time, is challenging and often exhausting.
My impulse is always to speak the raw, unvarnished truth, and I have to constantly remind myself that truth spoken without context and framing can be poorly received. I have to consciously pause before I speak to try to understand the context. Sometimes, I forget and just say exactly what I’m thinking.
Language is not intuitive for me. Email, for example, is a huge challenge. I have to read my emails dozens of times to make them grammatically cogent. And then I have to reread them many times more to ensure I’m taking the social context into account.
This may be surprising to anyone who has listened to me talk, but I sometimes lose my words. I’ll have a thought, but the words don’t come. I’m a slow reader. I have to really concentrate to process what I’m reading.
Processing sensory experience
It’s very hard for me to concentrate in loud, noisy rooms. Side conversations are immensely distracting. Bright lights hurt my eyes. I have a strong aversion to chemical smells. Some chairs don’t “feel” right when I sit in them. Most clothing is uncomfortable.
Suppressing repetitive motions
“Stimming” is how autistic people soothe and regulate themselves, especially when we are overwhelmed, whether from sensory overload or having to decipher complex social situations. Stimming takes many forms. I like to run my thumb over my fingernails in patterns of four strokes (I like counting things in patterns). I can do this without attracting undo attention. Some forms of autistic stimming, such as spinning, hand flapping, or vocalizing, can be more conspicuous and disruptive. I find it difficult to sit still in a chair that swivels.
I'm adding these as a deeper admission of my disabling autistic dark side.
Fear of contamination
I have always been a (very) frequent hand washer and general germaphobe. My autistic brain fears the unseen and unseeable, lurking on surfaces and in the air. This sensory sensitivity to precisely what's beyond the reach of my senses increases during times of anxiety. As you might imagine, a global pandemic has been a waking nightmare for me. To make matters worse, I got COVID early on in the spring of 2020, and I ended up with a long haul case. So I haven't just been fearing the monsters I can't see. I know now that monsters are real.
Vital need for sameness
I need routine. I need for things to stay the same. Not everything. Not even most things. But to deal with the barrage of new data that constantly floods my senses and my brain, I need an anchor, something that I can hold onto, to ground me. The same chair (always the same chair). The same cut of clothes (never different clothes). The same breakfast. The same order of things I do to start my day. Without these anchors, the world starts to come unglued. It disintegrates. I disintegrate. The sameness keeps everything whole, keeps me whole. It allows me to open my mind and let the data flood in. That's when I see things, new things, new patterns, new ways of what might be possible.
Enabling autistic traits: The light that brings balance
These are from the same coming out as autistic at work blog post:
I am a “bottom up” thinker. I am good at finding patterns in the data. This is easier for me than fitting the data into existing frameworks. Innovation can arise from seeing patterns that others may not. Pattern recognition is also important for risk management. The risk of bad outcomes can be difficult to spot, but can emerge from studying patterns of risk events. My truth-seeking impulse helps me stay objective when assessing risks, and ensures I don’t hesitate to surface them when the patterns emerge.
I have to work hard to learn existing processes and frameworks. I find it much easier to create new frameworks where they don’t yet exist. I enjoy doing things that have never been done before. I find a blank sheet of paper exhilarating. I enjoy the process of invention and finding new ways to solve problems. That’s my professional sweet spot.
I learned to code when I was in my thirties. I learned technical system design and architecture, despite having no formal education in computer science. My brain is wired for technology. It makes intuitive sense to me in a way that the things like social communication do not.
I can be intensely focused, sometimes to a fault. I have learned to leverage this as a strength, whether when solving problems or engaging with people one-on-one. Intense focus can also amplify my other skills.
Because language is not intuitive, I’ve had to work really hard at it. Over years of practice, I’ve developed a fluency. I’ve been a fiction writer, a successful blogger, and now I work on natural language AI. Teaching machines to understand and use language seems a natural turn in my career.
Consistent with intense sensory experiences, I feel what other people feel very intensely. This is contrary to a common stereotype that autistic people are not empathetic. In my experience, it’s actually the opposite. The feeling of empathy can be so overwhelming that I actually have to filter it in order to function. I use empathy in developing relationships, which helps me to overcome challenges with social communication. I approach leadership through empathy.
And finally, this is a strength that I do not talk about to most people, because it is hard to explain, and even harder to understand.
Seeing what's to come
Sometimes, I know things. I don't know how I know them. Sometimes I know things before they happen. I don't mean any kind of extra-sensory paranormal nonsense. I simply follow the data, I follow the pattern, and I see where it leads. It can be hard to explain what I see and what I know because often I don't have the words yet. Seeing the pattern isn't thinking in words. It isn't the result of an analytic process, if X, then Y. It's just knowing it, intuitively, holistically. Too often I don't fully understand what it is I know or what I think will happen it. I just get a... sense. A sense of the whole. It often takes time for the picture to become clear enough. Sometimes it never does.
Accepting the dark to embrace the light
We can’t escape our dark sides. Avoidance does not bring the balance that we seek.
Being autistic is, in some moments, disabling, and in others, empowering. For those who see only darkness in the experience of autistic people, there is a path into the light. For those who recognize their own autistic traits, but do not identify as autistic or disabled, being open about your experience can help make it safe for those who do.
And for those who seek resources, support, and protection, if autism is both a disability and an identity, there are imbalances to be addressed in anti-discrimination laws, health care, employment, housing, etc. Funded resources may still require a diagnosis, but protections for an identity should not.