Toward a Neuroqueer Future: An Interview with Nick Walker

 Dr. Nick Walker

Introduction

In this interview, Autism in Adulthood's Associate Editor Dora M. Raymaker interviews Nick Walker about the state of neurodiversity scholarship and practice, past, present, and future. Nick Walker is a queer autistic professor of psychology, a cofounder of the worker-owned publishing house Autonomous Press, a longtime participant in autistic culture whose ideas have influenced the emergent fields of neurodiversity studies and critical autism theory, and a transdisciplinary scholar whose work explores the intersections of neurodiversity, embodiment, queer theory, and transformative practice. Raymaker and Walker conducted the original interview through e-mail; Raymaker then added citations, formatting, and light copy editing.

Dr. Dora M. Raymaker: You've been deeply involved in the neurodiversity movement and neurodiversity scholarship since the early days. Can you start with an overview of the concept of neurodiversity and the movement's origins, particularly for readers who might not be familiar with its genesis?

Dr. Nick Walker: In the early 1990s, thanks in large part to the increasing availability of internet access, a growing number of autistic people throughout the English-speaking world began connecting with one another and cocreating autistic community, autistic culture, and an autistic rights movement. The autistic rights movement emerged in response to certain prevailing conditions: first, autism-related discourse and praxis was (and still is) dominated by what I've termed a pathology paradigm, in which autism is framed as a form of medical pathology or psychiatric “disorder”; second, this pathology paradigm consistently resulted in autistics being stigmatized, misrepresented, dehumanized, abused, harmed, and traumatized by professionals and by their own families; third, autistics seeking to improve this state of affairs were met with dismissal, hostility, and/or violence.

Autistic activists began to recognize that autistics were an oppressed minority group whose oppression in some ways followed similar patterns to the oppression of other minority groups. For example, researchers studying autistic people always started from the unquestioned assumption that autism was a medical pathology and that being autistic was inherently inferior to being nonautistic; this assumption biased and warped autism-related research in much the same way that sexist and racist assumptions have historically biased and warped so-called “scientific” discourses about women and people of color.

This left autistic activists with the question of how best to describe the nature of our minority status. Being autistic isn't an ethnicity, gender, sexual orientation, religion, or nationality—so what sort of minority group were we? Autistic scholar Judy Singer, writing on this topic in the late 1990s, provided an answer when she coined the term neurodiversity.¹ Just as humanity is ethnically diverse, and diverse in terms of gender, sexual orientation, and numerous other qualities, humanity is also neurocognitively diverse, and autistics are a neurominority group. I coined the term neurominority a few years after Singer gave us the term neurodiversity²; it seemed like an obvious extension of Singer's concept, and I'm sure others also came up with it independently. Another essential term is neurodivergent, coined by Kassiane Asasumasu somewhere around the year 2000; to be neurodivergent is to diverge from dominant cultural standards of neurocognitive functioning.³

Neurodiversity, simply put, is the diversity among human minds. For 15 years or so after the term was coined, it was common for people to speak of neurodiversity as “diversity among brains.” There still are plenty of people who talk about it that way. I think this is a mistake; it''s an overly reductionist and essentialist definition that's decades behind present-day understandings of how human bodyminds⁴ work.

Mind is an embodied phenomenon. The mind is encoded in the brain as ever-changing webs of neural connectivity. The brain is part of the body, interconnected with the rest of the body by a vast network of nerves. The activity of the mind and body creates changes in the brain; changes in the brain affect both mind and embodiment. Mind, brain, and embodiment are intricately entwined in a single complex system. We're not minds riding around in bodies, we're bodyminds.⁴

A lot of people hear neuro and they think, brain. But the prefix neuro doesn't mean brain, it means nerve. The neuro in neurodiversity is most usefully understood as a convenient shorthand for the functionality of the whole bodymind and the way the nervous system weaves together cognition and embodiment. So neurodiversity refers to the diversity among minds, or among bodyminds.

In terms of scholarship, discourse, and praxis, there are two basic ways to approach the biopsychosocial phenomenon of neurodiversity. Sometime around 2010, I started referring to these two approaches as the pathology paradigm and the neurodiversity paradigm.²

The pathology paradigm starts from the assumption that significant divergences from dominant sociocultural norms of cognition and embodiment represent some form of deficit, defect, or pathology. In other words, the pathology paradigm divides the spectrum of human cognitive/embodied performance into “normal” and “other than normal,” with “normal” implicitly privileged as the superior and desirable state.

The neurodiversity paradigm starts from the understanding that neurodiversity is an axis of human diversity, like ethnic diversity or diversity of gender and sexual orientation, and is subject to the same sorts of social dynamics as those other forms of diversity—including the dynamics of social power inequalities, privilege, and oppression. From this perspective, the pathologization of neurominorities can be recognized as simply another form of systemic oppression which functions similarly to the oppression of other types of minority groups.

When we recognize neurodiversity as a form of human diversity, and recognize the pathology paradigm as a form of systemic oppression like racism or heterosexism, it's easy to see that the concept of a “normal mind” is just as absurd and innately oppressive as the idea that white people are the default “normal” race or that heterosexuality is the one “normal” sexuality. And the pathologization of neurominorities—the framing of autism, for instance, as a “mental disorder” or a medical “condition”—is no more valid and no less oppressive than the framing of homosexuality as a “mental disorder.”

The two paradigms—the pathology paradigm and the neurodiversity paradigm—are as fundamentally incompatible as, say, homophobia and the gay rights movement, or misogyny and feminism. In terms of discourse, research, and policy, the pathology paradigm asks, “What do we do about the problem of these people not being normal,” whereas the neurodiversity paradigm asks, “What do we do about the problem of these people being oppressed, marginalized, and/or poorly served and poorly accommodated by the prevailing culture?”

I'd define the neurodiversity movement as the movement to shift the prevailing culture and discourse away from the pathology paradigm and toward the neurodiversity paradigm. The neurodiversity movement is by no means monolithic; there are a lot of different ways that people are working to bring about this shift in different realms and contexts, and of course there's some variation in how the neurodiversity paradigm is interpreted by different groups and individuals within the movement.

Although autistic scholars and activists—and forward-thinking nonautistic scholars with an interest in autism—continue to make up much of the movement's vanguard, the neurodiversity movement has spread beyond its origins in the autistic community and been embraced by members of other neurominority groups such as dyslexics and the folks who these days are described as “ADHD.”⁵ (I'm not a fan of the “ADHD” label because it stands for “Attention Deficit Hyperactivity Disorder,” and the terms “deficit” and “disorder” absolutely reek of the pathology paradigm. I've frequently suggested replacing it with the term Kinetic Cognitive Style, or KCS; whether that particular suggestion ever catches on or not, I certainly hope that the ADHD label ends up getting replaced with something less pathologizing.)

Dr. Raymaker: So that's where we've come from; I'd like to shift now to talk about where we are. How would you characterize the current status of the neurodiversity paradigm, both in terms of scholarship and in terms of its presence in the community, or as a factor in policy and practice decisions?

Dr. Walker: In academia, the neurodiversity paradigm has been generating some rich and vital scholarship across a wide range of disciplines. To pick just a few recent examples off the top of my head, there's Yergeau's work in the field of rhetoric,^6–8 Savarese's work in literary studies,^9,10 Bakan's work in musicology,^11–14 Gratton's book on psychotherapy with autistic transgender clients,¹⁵ and my own work on the intersections of neurodiversity with somatic and humanistic psychologies.^16,17

The first Neurodiversity Studies handbook was just published in the summer of 2020.¹⁸ I've been rather optimistically talking about “the emergent field of Neurodiversity Studies” since about 2012, so it's delightful to see reality catching up to my optimism. There's going to be a lot more work in this direction emerging over the coming years. As one can tell from the recent examples I've listed, though, part of the intrinsically queer and unruly nature of the neurodiversity paradigm is that it can't be confined within the boundaries of a single field, not even a field of Neurodiversity Studies.

What's striking about all of this scholarship is its vibrance and originality; each of the examples I've mentioned, and many others I can think of, make unique cultural contributions with the potential to serve as foundations for constructive and creative praxis. It's an enormously refreshing change from the decades of scholarship generated within the pathology paradigm, which all just boils down to a million tedious variations of “what's wrong with these people that makes them not-normal, and how can we make them act normal?” There's something innately oppressive and unimaginative about the pathology paradigm, and something innately generative about the neurodiversity paradigm.

On the downside, the growing popularity of the term neurodiversity has led to its widespread appropriation as a buzzword by a lot of individuals and organizations who don't understand its implications and are still very much thinking and operating within the pathology paradigm. It's far too common these days to see some website or article that uses the word neurodiversity and then proceeds to talk about autism and/or other forms of neurodivergence in highly pathologizing ways—for example, referring to them as “conditions,” promoting the old pathology paradigm stereotypes and canards, or rating autistic people as “high-functioning” or “low-functioning.” So it's important to think critically and recognize that mere adoption of terminology isn't the same as actually making a meaningful shift in mindset.

In terms of the neurodiversity paradigm's presence in culture and community, it is very much a mixed bag. On one hand, the neurodiversity paradigm has been deeply meaningful and liberating for many people. And we're seeing more instances of positive and nonpathologizing neurodivergent representation in various media—the autistic character Entrapta, in the Netflix show She-Ra and the Princesses of Power, is one of my favorite recent examples.¹⁹ On the other hand, the same problem that's arisen in the academic realm is also quite present in the broader culture: a whole lot of people have adopted some of the terminology of the neurodiversity paradigm, but are still thinking in ways that are rooted in the pathology paradigm.

Large organizations and institutions have a lot of inertia, so we're not seeing the influence of the neurodiversity paradigm on policy and practice on any large scale yet. I've seen exciting developments on a smaller scale, though, at a more grassroots level of praxis—for example, individual psychotherapists and other professionals, or small organizations, making the shift to the neurodiversity paradigm. And again, there 's that appropriation issue; neurodiversity is a popular buzzword in the tech industry these days, but it usually just means, “How can we more effectively exploit the labor of the autistics who are good at software development?” There's this brilliant sci-fi novel called Hoshi and the Red City Circuit²⁰ that explores where that sort of thing can lead.

Dr. Raymaker: Ha! Speaking of where the neurodiversity paradigm—or the appropriation of it—can lead, that's a perfect segue into talking about the future! As far as where you think we should be going next, what's the most pressing short-term work both in terms of scholarship and practice?

Dr. Walker: As I see it, the long-term aim of our work is a cultural paradigm shift: a widespread supplanting of the pathology paradigm by the neurodiversity paradigm. For those who want to see this happen, there's a set of crucial practices we'll need to cultivate rigorously in the years to come:

First, need to be absolutely clear—in our own minds and in our written and spoken discourse—that the pathology paradigm is nothing more than institutionalized bigotry masquerading as science, and that it's illegitimate and harmful in the same ways as racism, misogyny, and other forms of bigotry that have also historically masqueraded as science.

Second, we'll need to train ourselves to recognize the pathology paradigm in all its myriad manifestations. The nature of any culture's dominant paradigms is that they're so pervasive that they become normalized to the point of invisibility for anyone raised within that culture. This is why so many people fail to recognize sexism or racism when it's happening right in front of them. Waking up and learning to see the pathology paradigm is like waking up and learning to see any other form of systemic oppression. When we hear someone refer to autism as a “disorder” or a “condition,” it should instantly set off the same sort of red flags in our minds as hearing someone refer to homosexuality as a “disorder” or refer to an ethnic minority as “inferior.” A pathology paradigm phrase like “individuals with autism” should register with us as inappropriate in the same way that we intuitively recognize that there's something wrong with the phrase “individuals with homosexuality.”

Third, we'll need to get a lot better about holding the boundary that the pathology paradigm is every bit as unacceptable as any other form of bigotry. And yes, I'm well aware that this means rejecting almost all autism-related discourse and research produced over the past 90 years or so. I'm all for that. Up until the 1970s, nearly all scholarship pertaining to homosexuality framed it as a mental disorder, and professional practice was geared toward figuring out its causes, treating it, and/or preventing it. Sound familiar? In 1960, it would've been unthinkable to most psychologists to throw out every bit of scholarship and practice that stigmatized homosexuality and treated it as a pathology. And yet, over the past few decades, the academic and professional mainstream has done exactly that—and the results have been entirely beneficial.

Today, if a psychology professor at a major university gave a lecture advocating “curing homosexuality,” there'd be an outcry and likely an administrative reprimand. If a researcher wrote an article framing homosexuality as a medical pathology and advocating for gay conversion therapy and submitted it to a journal dedicated to queer studies or LGBTQ* health, it would be sternly rejected. And yet, even universities that put on a public show of embracing neurodiversity are still willing to employ faculty who speak of autistic people in pathologizing terms and advocate subjecting autistic children to abusive conversion therapy techniques like Applied Behavior Analysis—and that same sort of bigotry is still blithely published by academic journals and publishing imprints.⁶ This sort of thing will continue as long as we allow it to continue—and we don't have to allow it to continue. Overt homophobia and racism are becoming increasingly unacceptable and difficult to get away with in mainstream academic discourse these days, and that's a positive development which began with relatively small groups of people in academia deciding that they weren't going to silently accept that sort of thing anymore. Challenging oppressive discourses is an uphill battle at first, but I take heart when I look at how much the academic discourse on homosexuality has shifted during my own lifetime.

Dr. Raymaker: Are there any people right now who you feel are taking neurodiversity scholarship to this next level, or bringing it into the future in interesting or innovative new ways? What are they bringing to the discourse?

Dr. Walker: The neurodiversity scholarship that's most exciting to me these days is the work that focuses on the creative and transformative potentials of neurodivergence.

A lot of neurodiversity scholarship so far has had a disability justice focus; it's been aimed at challenging the abuses engendered by the pathology paradigm, and working toward societal accommodation and inclusion of neurominorities. This is necessary work, and we still need a good deal more of it.

Especially in this present postnormal era of escalating chaos and uncertainty,²¹ though, it's vitally important that we not just address current problems but also cultivate positive visions of better futures we can work toward. Neurodiversity scholarship aims toward a future in which neurodiversity is embraced and neurominorities are accommodated and welcomed, but the most inspiring and engaging neurodiversity scholarship—the work that's taking things to the next level—aims higher still, toward a future in which we engage with neurodivergence in ways that unleash previously undertapped creative potentials of individuals, communities, and humanity as a whole.

This is a central aim of my own work these days, which focuses on the use of transformative embodiment practices to foster realization of neurodivergent potentials for self-actualization and creativity.^16,17 Some other notable neurodiversity scholars doing particularly interesting and innovative “next level” work include M. Remi Yergeau, whose book Authoring Autism⁶ is a masterful critique of the rhetoric of the pathology paradigm but also extends beyond critique and into exploration of how neurodivergent bodyminds can creatively expand and queer the boundaries of rhetoric, communication, intentionality, and experience; Ralph Savarese, whose work with autistic collaborators in See It Feelingly¹⁰ explores how neurodivergent perspectives can provide new layers of creative insight into literature; Erin Manning, who examines the nature of autistic perception and its inherent creative potentials in Always More Than One²² and other writings and projects²³; and the team of Estee Klar, Adam Wolfond, and the “A Collective,”^24,25 whose work explores the creative synergies that can emerge from the interrelations and collaborations of autistic and nonautistic bodyminds.

It's worth noting that these examples are largely situated within the humanities (with the exception of my own work, which is in the field of psychology and thus technically falls within the realm of the social sciences). Of course there's other research happening in the social sciences these days that's grounded in the neurodiversity paradigm (some of it published in Autism in Adulthood): research that explores the lives, concerns, and needs of autistics and/or other neurominority groups without pathologizing them. Such research is certainly beneficial and we need more of it, but at the same time it's not exactly “innovative” or “next level” scholarship so far—it's work that mostly just makes me think, “About time” or “At least they managed to steer clear of the language of the pathology paradigm.” One notable exception I've run across is Peter Smagorinsky's anthology Creativity and Community among Autism-Spectrum Youth, which brilliantly applies the developmental theories of Lev Vygotsky to exploring the social and educational benefits of engaging autistic youth in collaborative creative processes; this book stands out as an example of what “next level” neurodiversity research in the social sciences can look like.²⁶

In the realm of biomedical research, the most promising development I've seen so far is the study conducted by the Multidisciplinary Association for Psychedelic Studies (MAPS) on the use of MDMA^†-assisted psychotherapy to treat social anxiety in adult autistics. I was a consultant, research associate, and coauthor on this study, which was published in 2018 under the cumbersome title, “Reduction in Social Anxiety after MDMA-assisted Psychotherapy with Autistic Adults: A Randomized, Double-blind, Placebo-controlled Pilot Study.”²⁷ From beginning to end, I insisted that the research team keep the study free of any taint of the pathology paradigm.

In terms of grounding biomedical research in the neurodiversity paradigm, the MAPS study was exemplary in a few ways. First, there was nothing about it that pathologized autistic people or that framed autism as inferior to neurotypicality. It wasn't in any way about “treating autism” (an innately oppressive concept that's central to the pathology paradigm); it was about treating social anxiety in consenting autistic adults who wanted their social anxiety treated because it was diminishing their quality of life (and importantly, it was diminishing their quality of life according to their own assessment, rather than according to some neurotypical's opinion of what a high quality of life should look like).

Second, we did the whole thing without using the language of the pathology paradigm. We never referred to autism as a “disorder” or “condition,” and we said “autistic adults” and never “adults with autism.” And guess what? The study was approved by the FDA and the DEA^‡ (one needs approval from the DEA to use a controlled substance like MDMA in a research study), and eventually published in the very mainstream journal Psychopharmacology, without the addition of any pathologizing language.

And third, where researchers working within the pathology paradigm would likely have framed social anxiety as a “symptom of autism” or a “comorbid condition” (thus implicitly framing autism as a pathology), we made it clear from the beginning that we recognized social anxiety as a symptom of the extensive social trauma that neurotypical society inflicts upon autistics from early childhood onward—in other words, we acknowledged that the social anxiety we sought to treat was a symptom of oppression. This recognition of social anxiety as a trauma symptom was central to the study: in fact, the whole reason we thought MDMA-assisted psychotherapy might be effective in treating social anxiety in autistics was that previous studies had proven MDMA-assisted psychotherapy to be effective in treating nonautistics for post-traumatic stress. (By the way, we turned out to be right: our study participants did show statistically significant alleviation of social anxiety symptoms in the wake of their MDMA-assisted treatment.)

To me, the MAPS study seems vastly more fresh and exciting than any of the myriad tiresome studies the pathology paradigm keeps producing about putative “causes” of autism. It's an inspiring example of the exciting directions in which biomedical research with neurodivergent populations (research with us, not on us) could take, once researchers free themselves from the unimaginative agendas of the pathology paradigm.

Dr. Raymaker: I'm familiar with some of these folks but not all; this is a wonderful group for me—and others—to explore more. Would you be willing to push the futurist lens open a little further and describe how you would envision a future in which the neurodiversity paradigm changes the world for the better—what would that look like and what major pitfalls might need to be guarded against? You can push it as far-future as you'd like.

Dr. Walker: Whatever else it might look like, any future society that has embraced and been transformed by the neurodiversity paradigm would be distinguished by two fundamental qualities: it would be neurocosmopolitan and it would be neuroqueer.

Cosmopolitanism is the open-minded embracing of human diversity. The cosmopolitan individual—or the cosmopolitan society—is comfortable with the vast spectrum of cultural and ethnic differences among people and appreciates and welcomes those differences as sources of aesthetic, intellectual, cultural, and creative enrichment. The cosmopolitan individual engages with diversity in a spirit of humility, respect, curiosity, and continual openness to learning, growth, uncertainty, complexity, and new experience.

The term cosmopolitanism is generally used in reference to the acceptance and appreciation of cultural and ethnic diversity. To be neurocosmopolitan—a term coined independently by Ralph Savarese and myself—is to extend that same cosmopolitan spirit of open-minded acceptance and appreciation to the realm of neurodiversity.^28,29

A neurocosmopolitan individual accepts and welcomes neurocognitive differences in experience, communication, and embodiment in the same sort of enlightened way that a cosmopolitan individual accepts and welcomes cultural differences in dining habits. In a future society that's truly embraced the neurodiversity paradigm, neurocosmopolitanism would be the prevailing attitude toward neurocognitive differences among humans.

Then there's neuroqueer, a term originally developed by M. Remi Yergeau, Athena Lynn Michaels-Dillon, and myself.³⁰ In the field of Queer Theory, gender is understood as an embodied performance: we're trained from infancy to perform and embody certain narrow and specific heteronormative gender roles. When we speak of queering gender (or of being queer), we're referring to actively subverting, disrupting, and deviating from the performance of heteronormative gender roles.³¹

Just as the prevailing culture entrains and pushes people into the embodied performance of heteronormative gender roles, it also entrains and pushes us into the embodied performance of neurotypicality—the performance of what the dominant culture considers a “normal” bodymind. And just as heteronormativity can be queered, so can neurotypicality: we can subvert, disrupt, and deviate from the embodied performance of being neurocognitively “normal.” That's neuroqueering (or being neuroqueer).^6,32

When I say that a future society that's been transformed by the neurodiversity paradigm would be a neuroqueer society, what I mean is that in such a society there would be no such thing as neurotypicality, no such thing as a “normal mind.” It would be commonplace for people to regard their own minds and embodiments as fluid and customizable, as canvases for ongoing creative experimentation, in much the same way that more and more people are doing with their genders. I should note here that part of the idea of neuroqueerness is that heteronormativity and neurotypicality are inextricably entwined with one another, and to queer one is inevitably to queer the other to some degree. In addition to embracing both gender-fluidity and neurofluidity, a neuroqueer culture would recognize gender-fluidity and neurofluidity as being entwined and as synergistically interacting with one another.

In terms of pitfalls to be guarded against, I'd say the big one these days is the far-too-common trend toward viewing neurodiversity through a lens of neuroessentialism, in which all people are seen as divided into rigidly defined, innate, and largely immutable categories or “neurotypes”—that is, each person is categorized as fitting permanently into the box of “neurotypical,” or the box of “autistic,” or the box of “ADHD,” or what-have-you, depending on what “type of brain” they were born with. This sort of essentialism is n't much different from the gender essentialism that seeks to permanently assign each person to the narrow category of either “male” or “female” depending on the shape of the genitalia they're born with.

Such neuroessentialism is inimical to neuroqueering, to creative neurofluidity and creative hybridity. I'm already seeing some people criticize or reject the neurodiversity movement, or even the very concept of neurodiversity, because it's too associated with essentialism and with sorting people into rigid categories by “type of brain.” But that sort of essentialism is by no means inherent to the neurodiversity paradigm; on the contrary, I think that to some degree it's a relic of the pathology paradigm that the neurodiversity movement just hasn't managed to finish outgrowing yet. Until we do outgrow it, it's a pitfall that has the unfortunate potential to derail our journey toward a neuroqueer future.

I'm not saying that it's not useful for people to recognize themselves as autistic or dyslexic or whatever. When not pathologized or stigmatized, such categories can be enormously valuable. It's certainly been useful to me to understand myself as autistic. I'm saying that our conception of neurodiversity shouldn't be limited by such categories, just like our conception of gender and sexuality shouldn't be limited by the categories of male, female, gay, and straight.

The differences between autistic bodyminds and nonautistic bodyminds are very real, and yet at the same time autism is a culturally constructed category that won't necessarily last forever or be culturally relevant forever. A hundred years ago, in the days of Sigmund Freud, physicians and psychologists never imagined that the “illness” they referred to as “hysteria” was a cultural construct that would someday be regarded as a laughably archaic bit of sexist pseudoscience.

Will autism still be regarded as a useful and valid category 100 years from now, or 300 years from now? I have no idea. But I do believe that the concept of neurodiversity, understood in a nonessentializing way that allows for fluidity and promotes neurocosmopolitanism and neuroqueering, has far-reaching implications and transformative potentials that extend beyond any given system of categorization. I can't say for certain what scientific research on neurodivergence would look like in a truly neurocosmopolitan and neuroqueer academic culture—but if we keep doing what we can to move the discourse in that direction, someday we might get to find out.

Authorship Confirmation Statement

Dr. Nick Walker provided the content for this article in response to questions from Dr. Dora Raymaker. Both authors provided light editing to prepare the interview for print and approved the final version. This manuscript has been submitted solely to this journal and is not published elsewhere.

Author Disclosure Statement

Dr. Nick Walker is the managing editor of Autonomous Press, which has published works of fiction by Dr. Dora Raymaker, including Hoshi and the Red City Circuit that is mentioned in this interview.

Funding Information

Dr. Raymaker's time was funded, in part, by the National Center for Advancing Translational Sciences of the National Institutes of Health under Award Number KL2TR002370, administered by the Oregon Clinical and Translational Research Institute. The work is solely the responsibility of the authors and does not necessarily represent the official view of the National Institutes of Health.