Neurodiversity and the Social Ecology of Disability

Psychiatric Times, Vol 39, Issue 5,

“This model challenges the idea that many neurodivergent individuals necessarily have neurological or cognitive pathologies, as well as the idea that neurotypicals are necessarily superior...”

CONVERSATIONS IN CRITICAL PSYCHIATRY

Conversations in Critical Psychiatry is an interview series that explores critical and philosophical perspectives in psychiatry and engages with prominent commentators within and outside the profession who have made meaningful criticisms of the status quo.

Robert Chapman, PhD (they/them or he/him), is a philosopher in the United Kingdom. They are senior lecturer in education at Sheffield Hallam University, focusing on the philosophy of neurodiversity. They have published widely on issues in philosophy of disability, the ethics of autism, and critical neurodiversity studies, and are currently writing their first book on the philosophy of neurodiversity. Their Shirley Foundation-funded doctoral research was carried out at the University of Essex between 2013 and 2018 and focused on the ethics of autism. They have taught at the University of Essex, King’s College London, and the University of Bristol. They are proudly neurodivergent and disabled. They also blog for Psychology Today and at Critical Neurodiversity.

Awais Aftab, MD: Let’s start by an introduction to the neurodiversity movement and the neurodiversity paradigm. What is neurodiversity and where does it clash with mainstream medical thinking?

Robert Chapman, PhD: The neurodiversity movement is a social justice movement pushing for a shift away from the default pathologizing of mental, developmental, and cognitive disability and toward what I have called a social ecological approach to understanding disablement. It all started when autistic individuals began meeting and raising consciousness online in the 1990s. Many realized they were tired of being represented as tragic deviations from supposedly normal functioning, and they were also often traumatized by ensuing attempts to “treat” or “cure” their autism. Eventually, as a new way to challenge how we think about normality, they began to talk about whether the principle that increased biodiversity is necessary for a robust ecosystem also applied to neurocognitive diversity within species. Just as we value, see beauty in, and try to conserve biodiversity, why not think about neurocognitive diversity in the same way? Based on this, Judy Singer, PhD, a member of these communities and, at the time, a sociology student, coined the term neurodiversity and called for a “politics of neurological diversity” in her 1998 thesis. Singer circulated her thesis, which was grounded in the theories of disability studies, among other autistic activists before publishing a revised version as a book chapter in 1999.1 This became a founding text of the movement, which rallied around Singer’s concept as well as existing themes from disability studies.

The term neurodiversity paradigm was proposed later, in 2012, by autistic scholar Nick Walker, PhD (she/her),2 who was also a graduate student at the time. By then the ideas initially developed by Singer were increasingly being adopted by individuals with other diagnoses such as bipolar, dyspraxia, and attention-deficit/hyperactivity disorder (ADHD). Walker was interested in the philosophical implications of this broader application and how it challenged theoretical assumptions and cultural and scientific practices. Walker proposed a distinction between the pathology paradigm, which she took to be dominant and to rest on a relatively restricted conception of neurological, cognitive, and developmental normality, and the emerging neurodiversity paradigm, which begins from the acknowledgement that neurological diversity is natural and beneficial for the cognitive and cultural richness of the species. On this paradigm, instead of being labeled medically normal or abnormal, those who are more enabled in a given society are considered more neurotypical, while those who diverge further from functional norms are more neurodivergent. Walker argued that developing and cultivating such a paradigm shift, to then be adopted for research, policy, and practice, would be necessary for the long-term emancipation and well-being of neurodivergent individuals. Although Singer’s chapter was relatively brief, it became highly influential within the movement, and I count it as another of the seminal texts of neurodiversity theory.

Aftab: You have talked about neurodiversity as a sociopolitical idea, centered around social models of disability, as well as neurodiversity as a scientific concept, offering a new way of thinking about function and dysfunction. Can you elaborate on these strands of neurodiversity (among other strands) and the shape they have taken in your own work?

Chapman: I see the cultural paradigm shift as quite similar to the change we have been seeing regarding the LGBT community, away from pathologization and toward pride, acceptance, and inclusion. The neurodiversity movement is also part of the broader disability rights and justice movement. With neurodiversity, while there is a long way to go, we are already seeing, for instance, neurodiversity paradigm vocabularies being used in newspapers and magazines and a shift to disability rights-based practices for neurodivergent individuals in schools and workplaces.

Accompanying this, a scientific paradigm has also been emerging, albeit in a somewhat piecemeal way. More neurodivergent individuals have become involved in research, and more neurotypical researchers have begun to listen to neurodivergent perspectives. This is beginning to change how researchers formulate hypotheses and produce knowledge. Among other things, researchers increasingly recognize neurodivergent strengths alongside limitations, study cognitive problems as relational rather than as arising from individual deficits, and view neurodivergent disablement and distress based on a social model of disability rather than a medical model.

In my own work, I developed the ecological model of functioning to help clarify and formalize the theoretical basis of the emerging shift in the scientific paradigm and to challenge the default pathologization of neurodivergence. I became interested in developing a new model of mental functioning partly because neurodiversity proponents had long been (successfully) using the social model of disability, and yet many researchers were still dismissing the idea that things like autism were not pathological. I realized that this was, at least in part, because the social model of disability leaves the dominant notion of individual dysfunction or impairment relatively intact, which is important because individual dysfunction is a core part of the definition of mental disorder (or of somatic disorder for that matter). As such, even the most successful application of the social model, while vital in other ways, is insufficient for undermining the ascription of neurological or mental illness, disorder, or pathology. After all, we can and do use social model interventions for things everyone agrees are genuine pathologies, such as dementia. Thus, I realized we needed an alternative model of functioning to augment alternative models of disablement and to help shift the paradigm.

Traditionally mental functions and dysfunctions have been determined through what I call “individualist comparativist” models, which compare all individuals to an aggregated norm and then rank them in levels of functioning. These models—which I date to Darwin’s half-cousin, the eugenicist Francis Galton—seek to be continuous with the kind of evolutionary biology that focuses on individual fitness or adaption, and they thus rank fitness levels from highest to lowest in members of a population. If we accept these models, then it seems like an objective fact that members of low-ranked groups such as autistics and dyspraxics are naturally dysfunctional, and hence pathological, in comparison to neurotypicals—even if the social model can be helpful for alleviating disablement. The continued use of these models reifies neurodivergent disablement as natural fact and also lends scientific authority to the normalization of neurodivergence.

By contrast, the ecological model, as the name indicates, is more influenced by how ecologists talk about functioning. Ecologists tend to be less interested in ranking individual fitness levels and more interested in how broader systems function as a whole, how functions emerge from the relations between organisms, and how the dominance of some forms of organisms can be harmful for the functioning of others. Bearing this in mind, in my article I drew on theoretical and empirical research to argue that many neurodivergent functions, or relational functions that emerge from group neurodiversity, are overlooked on the traditional models.3 To avoid these problems, I then combined the arguments of neurodiversity proponents with ecological functional models to propose a preliminary ecological model in line with Walker’s call for a paradigm shift. To the extent this proves to be useful for researchers, I hope it will help with the scientific paradigm shift by orienting researchers toward asking different questions, formulating different hypotheses, and ultimately producing knowledge that helps us move beyond the default pathologizing of neurodivergent disability, and which supports a broadly conservationist approach to neurodiversity.

Aftab: How does your ecological model of mental functions play out within psychiatry and in the context of existing philosophical debates about neuropsychiatric dysfunction?

Chapman: It may be helpful to look at this historically. The modern debate could be dated to the 1960s, when the antipsychiatrist Thomas Szasz, MD, argued that mental illness was a myth and that psychiatry was a pseudoscience. Szasz was happy to acknowledge that neurological illnesses exist. But he nonetheless held that there could be no mental illnesses, since for him, an illness must be biological (including neurological) by definition. The Szaszian position, while challenging the pathologization of emotional distress, is entirely continuous with the Galtonian project of ranking neurocognitive functions in relation to an assumed norm. This challenged the psychoanalytic psychiatry of the time, which was not based on biological research, and pushed psychiatry toward the more biocentric and cognitivist models that are still used today. While this argument still has some influence, contemporary psychiatry has largely neutralized Szasz’s critique not just by analyzing the conceptual flaws of his arguments, but also by finding ample evidence that biological processes in some form or another, though they may not take the form of discrete dysfunctions, are part of the story for many conditions listed as mental disorders. In many ways contemporary psychiatry has thus become more Szaszian, although nobody likes to admit that.

By contrast, while they have some surface overlap with Szasz in that they challenge pathologization, the neurodiversity perspective and my ecological model present a novel philosophical position that is equally at odds with mainstream psychiatry and the Szaszian tradition (including its various offshoots within critical psychiatry). At base, the ecological model rejects the assumption that humans have enough neurocognitive uniformity across the species that legitimizes the notions of normal neurological functioning. Instead, my model begins with the acknowledgement that we are a neurologically diverse species, and the insight that neurocognitive functions and dysfunctions are (at least in significant part) relationally produced and upheld, both between different minds and between mind and environment. It is not just that cognitive niche construction enables or disables different forms of functioning; it is also that a trait associated with individual disability may contribute to functioning at the group level, while a trait associated with individual ability may contribute to maladaptive group functioning. So things are a lot more complex than being normal or abnormal.

Part of the significance of adopting this model is that we recognize more neurodivergent mental functions, and that many dysfunctions are relational, often stemming in part from the neurotypical side, rather than being intrinsic to neurodivergent individuals. Simultaneously, by incorporating a social model analysis of cognitive niche construction, this also allows us to shift to viewing neurodivergent abilities as forms of marginalized functioning rather than inherent dysfunction. This model challenges the idea that many neurodivergent individuals necessarily have neurological or cognitive pathologies, as well as the idea that neurotypicals are necessarily superior, while fully acknowledging the fact of neurodivergent disablement. Moreover, unlike the Szaszian critique of psychiatric pathologization, this model is compatible with disability justice more broadly because it applies equally to learning and cognitive disabilities and neurodevelopmental disabilities, instead of reinforcing their pathologization. More concretely, I thus hope the model will help reorient the surrounding biopolitics away from the normalizing tendencies developed by 19th-century eugenicists and toward a conservationist approach to studying and supporting human neurodiversity.

Aftab: A common objection that is raised against neurodiversity is that the framework applies poorly to individuals who are severely disabled, have high support needs, and may live in specialized settings. Given that this may be on the minds of many readers as well, I think it is worth bringing up here.

Chapman: This is a very important question on a complex topic. I will restrict myself to a pair of key points. First, the form of neurodiversity that I, and I believe most proponents, endorse does not deny that there are different forms of disability, and that in some cases much more direct support is needed (even if we have critiqued the utility of terms like severe or high-functioning). In fact, the clear implication of adopting social models of disability (not to mention my ecological model of functioning) would be that individuals with more complex disabilities should get more support, not less.

A key point of contention, of course, regards whether we prefer to see complex disabilities more as mental pathologies to be treated or marginalized minorities to be supported. This brings me to my second point. Because my approach to neurodiversity is based on a disability justice perspective, it relies more on standpoint epistemology, centering the lived experience of marginalized individuals or groups. My own view, then, is that we need to do more to center the voices of those with intersecting disabilities and high support needs when talking about those who sit at the same intersections.4 At the moment, we have no data on the views of those considered severe on such topics. Interestingly, though, just looking through texts written by nonverbal autistics with intersecting disabilities and high support needs, it is quite easy to find many who hold views consistent with the neurodiversity perspective, as I have written about previously.5 Indeed, some of the most influential neurodiversity proponents, notably the late Mel Baggs, were labeled severe and had high support needs. So we cannot assume that everyone with higher support needs would reject the neurodiversity perspective. My hope is that empirical researchers will, where possible, survey the preferences of those with high support needs in a more systematic way. As a philosopher I do not have the right resources to do that kind of research, but I can say I think that should be the starting point of any conversation on this.

Aftab: What hopes do you have for the future of neurodiversity theory and practice?

Chapman: I am excited about how neurodiversity theory and neurodiversity studies have been coming on in leaps and bounds over the past few years especially. This has been led by grassroots advocates and has been strengthened more recently because of a concentrated effort of neurodivergent people to train in a variety of fields to further develop the paradigm. But there is still a lot of work to do and there are a lot of problems and barriers we are facing. One thing I often worry about is how the vocabularies of neurodiversity are being co-opted by already established neurotypical clinicians, researchers, corporations, and so forth in ways that function to uphold rather than challenge the status quo. Many of the leading pathology paradigm theorists of autism have now rebranded themselves as neurodiversity advocates without giving up on their harmful, pathology paradigm theories and commitments. My hope is that the more radical, liberatory aspects of the movement will prevail.

This brings me to a second point, which regards my hopes for institutional support. I hope educational and research institutions will make meaningful moves to support neurodivergent neurodiversity researchers. By the end of the decade, I hope to see universities establish neurodiversity research centers, neurodiversity studies degrees, and neurodiversity studies lectureships. I would also like to see neurodiversity theory modules increasingly included in clinical training, not to mention in humanities and social science degrees.

Finally, within the neurodiversity movement, there are still remnants of the pathology paradigm that I think need to be overcome. For instance, some neurodiversity proponents still see neurotypes as natural kinds with timeless biological essences. I hope we can overcome this kind of biological essentialism since it is theoretically untenable and contributes to a lot of needlessly toxic discourse.

Aftab: Thank you!

The opinions expressed in the interviews are those of the participants and do not necessarily reflect the opinions of Psychiatric TimesTM.

Dr Aftab is a psychiatrist in Cleveland, Ohio, and clinical assistant professor of psychiatry at Case Western Reserve University. He is a member of the executive council of Association for the Advancement of Philosophy and Psychiatry and has been actively involved in initiatives to educate psychiatrists and trainees on the intersection of philosophy and psychiatry. He is also a member of the Psychiatric TimesTM Advisory Board. He can be reached at awaisaftab@gmail.com or on Twitter @awaisaftab.

Dr Aftab and Dr Chapman have no relevant financial disclosures or conflicts of interest.

References

1. Singer J. “Why can’t you be normal for once in your life?” From a “problem with no name” to the emergence of a new category of difference. In: Corker M, French S, eds. Disability Discourse. Open University Press; 1999:59-67.

2. Walker N. Throw away the master’s tools: liberating ourselves from the pathology paradigm. In: Bascombe J, ed. Loud Hands: Autistic People, Speaking. Autistic Self Advocacy Network; 2012:225–237.

3. Chapman R. Neurodiversity and the social ecology of mental functions. Perspect Psychol Sci. 2021;16(6):1360-1372.

4. Chapman R. Multiply-disabled autism and intersectional feminism. Psychology Today. September 2, 2019. Accessed September 21, 2021. https://www.psychologytoday.com/gb/blog/neurodiverse-age/201909/multiply-disabled-autism-and-intersectional-feminism

5. Chapman R. Are the voices of the “severely” autistic being silenced? Psychology Today. September 10, 2019. Accessed September 21, 2019. https://www.psychologytoday.com/gb/blog/neurodiverse-age/201909/are-the-voices-the-severely-autistic-being-silenced