Has “Neurodiversity” Gone Rogue?

On a Movement Undermining its Own Linguistic Innovation

I do my best thinking against the hum of long international flights, normally over the Pacific.

I often melt into airplane seats, my body collapsing, finding rest for more hours at a time than my usual suburban life in Northern California allows. My husband is originally from Nepal and so for the past seventeen years we have been making yearly international treks (to the country, not the peaks — to be clear, we are both urban dwellers).

One day on such a flight, after a stressful couple of years living back in the Bay Area, where I’m originally from, my mind swelled with the wonder of time and drifted to questioning territory. The thoughts went something like this:

“I’m exhausted. Am I alone? No one talks to me about their loneliness or emotional struggles of adulthood. Why is that? We seem to pay so much attention to the outer struggles of identity in regards to work, money, race, sex, sexuality. What about the inner struggles that unite us all? Is this a thing? Inner diversity?”

Naturally for me, when I landed at the Seoul airport, I started googling things like “emotional diversity” and “temperament diversity,” and a day or so later, after arriving in Kathmandu, it didn’t take long for me to stumble upon the term “neurodiversity.”

“Great!” I thought to myself. “People are talking about this. Awesome. Neurological diversity feels close to what I was thinking about. Fantastic.”

But I soon realized that, because of its rapid uptake in one or two specific communities, neurodiversity became, over time — for all intents and purposes — a synonym for autism (or sometimes ADHD).

“Huh?” I thought to myself. “That’s not neurodiversity. That’s just autism. Autism is autism. Neurodiversity is everything — it’s bipolar, anxiety, OCD, dyslexia, all of it.” That’s what the draw was for me, the appeal of having an umbrella term.

After a while I found a few fellow writers publishing smart work on the topic, most notably the journalist Steve Silberman, author of *NeuroTribes*, and the disability scholar Nick Walker.

I felt enough overlap and alignment with a few figures out there, not all, but enough to plunge in further, read up about this term and its movement, and eventually even publish a book about neurodiversity. In the book I try to clearly explain what neurodiversity is and isn’t, and I talk about a range of neurodivergences, namely autism, ADHD, synesthesia, and sensory processing disorder, as well as bipolar, schizophrenia, dyslexia, misophonia and OCD.

But the number one interview request I receive is to talk about autism. Someone’s planning a neurodiversity conference? Oh, let’s talk about autism! Can we interview you about your book? Oh let’s talk about autism!

Today, if you google “neurodiversity,” thousands of autism organizations come up.

And my concern is not that autism is getting attention — it’s fantastic that it is! — but my concern is the grief over a powerful coinage of a term, first used by Australian sociologist Judy Singer in 1999 meant to be a wide encompassing umbrella, now essentially occupied by one segment of people and that narrow focus seems to actually be the antithesis of “neurodiversity.” I wouldn’t say this if I was actually seeing neurodiversity organizations embracing the full range of psychiatric and neurological labels. But no, many vocal neurodiversity activists appear content using the term within the one narrow window of autism and completely setting aside what the word means, its origins, its uniting power, and most importantly its philosophical and practical implications for how to view human difference.

What is neurodiversity? Aside from the literal definition of “neurological diversity,” it’s a paradigm meant to stop pathologizing those with any form of mental difference or disorder, a shift away from only thinking in terms of “normal” and “abnormal.” There is a goal of acceptance, and integration within society.

There are countless examples of individuals living with schizophrenia or hearing voices, for example, who are living full, fulfilling lives, in large part because of organizations like the Hearing Voices Network and the books of Law Professor Elyn Saks, who shares openly what it’s like to write and teach while managing her schizophrenia with medication.

There are others with bipolar, for example, like Melody Moezzi, who is a creative writing teacher and bestselling author and uses her law degree to advocate for anyone who has been in solitary confinement — not just others with bipolar.

It’s called neurodiversity for a reason. It’s not called auti-diversity.

But both Elyn and Melody do their advocacy not under the banner of the term “neurodiversity” or a single label, but under the banner of wanting others to suffer less in their lives than they have. It’s a basic humanist urge, and it’s that urge that initially motivated the neurodiversity movement, and motivated me.

And it’s that urge that I feel the neurodiversity movement is at risk of losing.

It is not enough to keep hammering autistic rights under the slogan of neurodiversity. If you want to advocate for autism, call it autism! Autism is not a synonym for neurodiversity.

I argue for cross-disciplinary (and in this case, “cross-label”) mingling — that is, pushing ourselves outside of the familiar comforts of connecting with other people with our exact same diagnoses and instead realizing the deeper, fundamental need at play which is to push society, the field of medicine, and the media toward a more equitable treatment of those with mental differences.

By expanding each of our spheres — I imagine a literal bubble where my bubble begins to gently meet another bubble — we are each seen more fully, both who we are as people, and what our label or diagnoses “look” like in real life.

There is a time and place for shouting and hammering and making noise — usually in times of protest. But life is meant to be a long haul, not protest after protest, which quickly leads to burnout. Besides, constantly calling people out using the neurodiversity hashtag or other aggressive action doesn’t really speak to the “humanist” power in our (or any) movement.

That said, I believe there is a role for different types of activism–from policy and human rights to media, human resources, and more–and I happen to sit more on the narrative, philosophical side of movement change. My chosen vehicle is words — writing, conversations, gatherings of people debating.

I appreciate what everyone does, but let’s get back to the spirit of “neurological diversity.” It’s called neurodiversity for a reason. It’s not called auti-diversity. Let’s come together under the neurodiversity flag once more and showcase to the world the expansive power of embracing differences of every kind, not just one.

This is part one of a three-part series. Read part two here and part three here.