Autism and the Pathology Paradigm

June 23, 2016

It’s the Summer of 2016, and it’s been exactly five years since I wrote “Throw Away the Master’s Tools: Liberating Ourselves from the Pathology Paradigm,” which has since become one of the foundational pieces of literature on the neurodiversity paradigm. “Throw Away the Master’s Tools” first saw publication in the Loud Hands: Autistic People, Speaking anthology in January 2012, and has been available here on this blog since 2013. 

This 5-year anniversary of the writing of “Throw Away the Master’s Tools” seems like a perfect time to share this new brief piece on autism and the pathology paradigm, which is not-so-cryptically entitled “Autism and the Pathology Paradigm.” 

“Autism and the Pathology Paradigm” is the first section of a considerably longer piece entitled “Teaching Critical Perspectives on Autism,” which I wrote last month and which will be published as a chapter in the anthology Disability Studies in Education, edited by Phil Smith, Gregg Beratan, and Elizabeth J. Grace. Disability Studies in Education will be published in 2017, and it will be awesome. In the meantime, I’ll be sharing my “Teaching Critical Perspectives on Autism” chapter with you, right here on this blog, in a series of three installments. This is the first installment. The second installment is here and the third installment is here.

Warning: this was written for an academic audience, so it’s not quite as easy and accessible as most of the work I post here on my blog. If you were curious as to what sort of writing I produce when I’m wearing my academic hat, here’s the answer. (My “academic hat” is purely metaphorical, and not an actual hat I own, but if it was an actual hat it would probably look like the Hogwarts Sorting Hat. And now I want one.)

Autism and the Pathology Paradigm

Discourse and education on autism, in the academic and professional realms, has thus far been dominated by what I have termed the pathology paradigm. At the root of the pathology paradigm is the assumption that there is one “right” style of human neurocognitive functioning. Variations in neurocognitive functioning that diverge substantially from socially constructed standards of “normal” – including the variations that constitute autism – are framed within this paradigm as medical pathologies, as deficits, damage, or “disorders.”

In recent years a new paradigm has begun to emerge, which I refer to as the neurodiversity paradigm. The term neurodiversity, coined in the late 1990s, refers to the diversity of human minds – the variations in neurological structure and functioning that manifest within the human species. Within the neurodiversity paradigm, neurodiversity is understood to be a form of human diversity that is subject to social dynamics – including the dynamics of oppression and systemic social power inequalities – similar to those dynamics that commonly occur around other forms of human diversity such as racial diversity or diversity of gender and sexual orientation.

Through the lens of the neurodiversity paradigm, the pathology paradigm’s medicalized framing of autism and various other constellations of neurological, cognitive, and behavioral characteristics as “disorders” or “conditions” can be seen for what it is: a social construction rooted in cultural norms and social power inequalities, rather than a “scientifically objective” description of reality.

The choice to frame the minds, bodies, and lives of autistic people (or any other neurological minority group) in terms of pathology does not represent an inevitable and objective scientific conclusion, but is merely a cultural value judgment. Similar pathologizing frameworks have been used time and again to lend an aura of scientific legitimacy to all manner of other bigotry, and to the oppression of women, indigenous peoples, people of color, and queer people, among others. The framing of autism and other minority neurological configurations as disorders or medical conditions begins to lose its aura of scientific authority and “objectivity” when viewed in this historical context – when one remembers, for instance, that homosexuality was classified as a mental disorder in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM) well into the 1970s; or that in the Southern United States, for some years prior to the American Civil War, the desire of slaves to escape from slavery was diagnosed by some white Southern physicians as a medical “disorder” called drapetomania.

At this time, sadly, the pathologization of autistic minds, bodies, and lives still has not been widely recognized – especially not within the academic and professional mainstream – as being yet another manifestation of this all-too-familiar form of institutionalized oppression and othering. The academic and professional discourse on autism, and the miseducation on autism given to each new generation of professionals, remain uncritically mired in the assumptions of the pathology paradigm. And since bad assumptions and unexamined prejudices inevitably become self-reinforcing when mistaken for facts, this entrenchment in the pathology paradigm has kept autism-related theory, praxis, and education stuck in a self-perpetuating cycle of ignorance and bigotry.

A proper accounting of the devastating consequences of this ignorance and bigotry, both for autistic persons and for society, would fill many pages and would be beyond the intended scope of this brief essay. However, for the benefit of those readers less familiar with the realm of autism-related professional and institutional praxis, a brief summary of the general shape of the situation is in order. The crux of the matter is that the neurodiversity paradigm is fundamentally in alignment with the social model of disability (disability understood as the result of failures of accommodation, societal attitudes, and systemic barriers, which conflict with the needs, traits, and abilities of specific groups and individuals); whereas the pathology paradigm is inextricably entwined with the medical model of disability (disability attributed exclusively to medicalized defects located within the disabled individual, with the implicit assumption that status quo societal norms are more or less “right” and “natural” and that having traits and needs that are incompatible with those norms constitutes a personal deficiency).

The near-total dominance of the pathology paradigm (and thus of the medical model of disability) in the discourse on autism means that autism-related professional and institutional praxis is overwhelmingly dominated by a focus on “fixing” autistic persons – i.e., trying to make them non-autistic – at the expense of any significant focus on societal acceptance of autism, accommodation of autistic needs, removal of systemic barriers to access and inclusion, or supporting autistic persons in thriving as autistic persons. Further, since it is not actually possible to make an autistic person into a non-autistic person, the focus on this goal has inevitably served to generate nothing but absurd pseudoscience, quackery, and horrifying abuses.

The worst and most widespread abuses have been those perpetrated under the guise of “behavioral therapies” (e.g., Applied Behavior Analysis, or ABA), which have been used to torture and traumatize two generations of autistic children, and which remain popular with parents and professionals despite the warnings of autistic adult survivors. The popularity of these abusive “behavioral therapies” can be traced directly to the focus on the impossible goal of making autistic persons into non-autistic persons, a goal implicitly mandated by the pathology paradigm. Behaviorism circumvents the impossibility of this goal by pretending that superficial outward compliance with specified non-autistic behavioral norms is the same thing as “recovery from autism” – while ignoring the long-term psychological costs of such compliance and of the abusive methods used to attain it.

The dominance of the pathology paradigm makes the proliferation of such abuses inevitable. Only a fundamental shift in the discourse – a shift from the pathology paradigm to the neurodiversity paradigm – is likely to create any substantial improvement in the realm of autism-related praxis.







Previous post:

Next post: