Guiding Principles for a Course on Autism

July 5, 2016

This blog post is part three of the three-part “Teaching Critical Perspectives on Autism” series, in which I share the chapter I wrote for the book Disability Studies in Education (edited by Phil Smith, Gregg Beratan, and Elizabeth J. Grace; to be published in 2017).

The first part of the series“Autism and the Pathology Paradigm,” is here.

The second part of the series“My Autism Course at CIIS,” is here.


Seven Guiding Principles

Early on in my process of designing my Critical Perspectives on Autism and Neurodiversity course for the undergraduate Interdisciplinary Studies program at California Institute of Integral Studies, I asked myself the question, “What are the most essential and indispensible guiding principles any course on autism must follow, in order to ensure that the course truly remains grounded in the neurodiversity paradigm and avoids inadvertently reinforcing the attitudes of the pathology paradigm on any level?” I eventually developed a list of seven such guiding principles, which have served me quite well and which are here enumerated in the hope that they will be useful to others in creating similar courses.

1. To Hell with “Balance”

A good course on autism (or, for that matter, a good piece of writing on autism, or good education or journalism on autism in any medium) should not attempt to strike any sort of “balance” between the neurodiversity paradigm and the pathology paradigm. The pathology paradigm is simply an outgrowth of cultural ableism and bigotry. Work based in the pathology paradigm has no more scholarly or “scientific” validity than work based in cultural paradigms of racism, misogyny, or homophobia. Like racism, misogyny, and homophobia, the pathology paradigm is just plain wrong. The fact that at this point in history nearly all mainstream academic and professional writing on autism is based in the pathology paradigm doesn’t make it any less wrong. There was a time that nearly all mainstream academic and professional writing on race was racist, and that didn’t make racism valid or right.

A good educator should seek to expose students to good information while steering them away from ignorance and bigotry. A “balance” between right and wrong isn’t right; a “balance” between good information and ignorant bigotry isn’t superior to good information. So, to hell with “balance.” If you were teaching an African-American Studies course, would you insist that half of the assigned readings consist of racist literature by white supremacists, in the interest of “balance”? I certainly hope not.

Consider also that the pathology paradigm is so dominant and pervasive in academia and in society as a whole that all students in any course on autism have grown up thoroughly steeped in the assumptions of the pathology paradigm, and it’s likely that nearly everything they’ve been taught about autism has been based in the pathology paradigm. Students come into a class on autism already heavily biased toward the pathology paradigm and with heads already full of the bigoted misconceptions about autism engendered by the pathology paradigm, and outside of the class they’ll continue to dwell in a world in which the pathology paradigm is constantly reinforced. Thus, even if “balance” were our priority, courses that are entirely and intentionally weighted toward the neurodiversity paradigm are merely a small step toward restoring balance in a world that’s overwhelmingly biased toward the pathology paradigm.

So a good course on autism should actively and uncompromisingly promote the neurodiversity paradigm, just as a good African-American Studies course is actively and uncompromisingly anti-racist. Work based in the pathology paradigm, if it’s assigned at all, should be assigned only so that the instructor and students can critique it in order to hone the students’ skills at recognizing and critiquing such work.

2. The Instructor Must Be Autistic

The instructor must be autistic. Imagine the outcry that would (rightly) ensue if a college’s courses in Women’s Studies were primarily taught by men, or if a college’s courses on African-American Studies were primarily taught by white people! The fact that it’s still widely regarded as acceptable for courses on autism to be mostly taught by non-autistic people is an indicator of just how deeply the pathology paradigm pervades the mindset of our society. Regardless of the curriculum, every course on autism that isn’t taught by an autistic instructor implicitly reinforces the pathology paradigm and the ableist assumption that non-autistic persons are better qualified to speak for and about autistic persons than autistic persons themselves. There are enough out-of-the-closet autistics in academia these days that any college should be able to find one to teach a course on autism. And given how heavily most hiring processes discriminate against autistics, the autistic academics could certainly use the work.

3. The Instructor Must Be a Participant
in Autistic Culture, Community, and Resistance

When academic institutions do invite an autistic person to have any sort of significant voice in their curriculum on autism, the autistic person in question is nearly always chosen from a short list of well-known autistics whom I have come to think of as the tame autistics. The tame autistics all have certain traits in common: they are white; they are heterosexual, asexual, and/or fairly closeted about their sexuality; they grew up fairly affluent and have never faced extreme poverty or homelessness; they are highly capable of oral speech; they are ableist, and have no problem with pathologizing non-speaking autistics or other autistics who are significantly more disabled than themselves; they regard disability as shameful and tend to avoid describing themselves as disabled; they rarely contradict non-autistic “autism experts” or ableist autism organizations run by non-autistic people; they have few (if any) close autistic friends and have never been deeply involved in the radical activist autistic culture and communities from which the Neurodiversity Movement emerged; they have appropriated the term “neurodiversity” now that it’s becoming a well-known buzzword, but their thinking remains rooted in the pathology paradigm. Temple Grandin and John Elder Robison are probably the best-known of these tame autistics at the time that I write this, but there are many others – in fact, there are a couple of publishing companies, specializing in autism-related books based in the pathology paradigm, that actively seek the work of tame autistic authors.

Autistic though they may be, none of these tame autistics would be equipped to create or teach a curriculum that poses real critical challenges to the pathology paradigm and to the bigotry of the dominant cultural narratives around autism. For a course to be effective in serving those goals, it’s not enough for the instructor to be autistic; the instructor must be an autistic with a substantial history of active participation in autistic culture and community, including autistic rights activism, resistance to oppressive cultural and professional practices based in the pathology paradigm, and celebration of autistic pride.

4. Autistic Voices Must Be Central

The writings and perspectives of actual autistic persons must be central, not peripheral, to the curriculum. At least 80% of the assigned readings should be by autistic authors. Tame autistics don’t count – not that the course can’t include any material by tame autistics, but such material should be approached with the explicit intent of critiquing the internalized oppression of the authors, and the way that the work of such authors tends to perpetuate the pathologizing narratives that the authors have been taught to impose on their lives. A course in which most of the readings by autistics are by tame autistics is a course that reinforces dominant cultural narratives rather than challenging them.

5. Truth Is Where It Is

In the realm of conventional academic literature (e.g., peer-reviewed journals and books from mainstream academic presses) the discourse on autism is dominated by the voices of non-autistic writers whose work is based in the pathology paradigm. Autistic voices and narratives that pose critical challenges to this dominant discourse, and to the host of beliefs and practices around autism that are rooted in the pathology paradigm, are systematically marginalized in this literature – excluded, silenced, disingenuously misinterpreted, or condescendingly dismissed.

To find the autistic voices that challenge the assumptions and practices of the dominant paradigm through various combinations of personal testimony and direct critique, one must therefore look outside the well-guarded walls of mainstream academic literature. Until quite recently, nearly all of the most important work by non-tame autistic authors could only be found on the internet, most often on the blogs created by the authors themselves. This is still largely the case, although some of these authors are finally beginning to gain footholds on the fringes of academic publishing – primarily in journals devoted to Disability Studies, or through the efforts of small independent publishing houses like Autonomous Press that specifically seek to amplify marginalized voices. Given this state of affairs, the list of assigned readings for a course on autism based in the neurodiversity paradigm rather than the pathology paradigm must necessarily consist to a large degree of materials drawn from autistic-owned blogs and other sources outside of the realm of conventional academic literature.

The instructor ought to make a point of explaining all of this on the first day of class, and perhaps also articulate it in the syllabus. It’s good for students to understand the rationale behind an unorthodox reading list; it’s also good for students to understand how the gatekeeping systems of conventional academic literature resist incursions by marginalized voices that pose radical challenges to dominant paradigms – and how such challenges, as a result, tend to emerge outside the borders of mainstream academia and only gradually fight their way inward.

6. The Instructor Must Model
the Accommodation of Neurodivergence

Most academic settings reflect the ableist and neuronormative values of the dominant culture. Students are expected to conform to the dominant neuronormative conventions of learning and participation, and students whose learning and access needs conflict with those conventions are heavily discriminated against in most educational institutions. The instructor must openly and explicitly declare the class a zone of freedom from this sort of discrimination and compulsory neuronormativity, and must clearly and consistently demonstrate the creative accommodation of neurodivergence and individual access needs in her conduct of the class.

An instructor may assign a superb list of readings on the neurodiversity paradigm, and may speak eloquently on the importance of embracing neurodiversity and accommodating the access needs of neurodivergent persons – but if the instructor does not model this embracing and accommodation of neurodivergence in how she actually conducts the class and deals with the students, then the instructor’s hypocrisy will ultimately undermine her message and the course will be a hollow sham. One cannot convincingly challenge a paradigm of compulsory neuronormativity while remaining complicit in the institutionalized enforcement of that same neuronormativity. In the immortal words of Audre Lorde, the master’s tools will never dismantle the master’s house.

It is not sufficient for the instructor to only grant students the accommodations that are mandated for them by the college’s Disability Services department. This is merely compliance with the law (although many instructors and many institutions resist even doing that much). Disability Services departments in the world of higher education reinforce the pathology paradigm by demanding that neurodivergent students subject themselves to the process of being professionally diagnosed, and of having their divergences from neuronormativity pathologized as “disorders,” before accommodations are granted. Thus, any instructor who provides accommodations only when required by the Disability Services department is also implicitly reinforcing and condoning the pathology paradigm.

Instead, on the first day of class, the instructor should explicitly point out the above dynamics, and should invite all students to publicly or privately speak up about any access needs they have that they’re aware of or that they might become aware of during the course of the term. The instructor should do her best to work with the students to accommodate their needs. If there are accommodations that neither the instructor nor the student can provide, and Disability Services and/or other institutional departments must be involved, then the instructor should advocate for the student with those departments if such advocacy can help to expedite the provision of the needed accommodations.

Conflicts between the access needs of different individuals should be negotiated in class as part of the learning process. For instance, I often get students who need to take notes on laptops, tablets, or other electronic devices, because they need the notes in order to retain information but they can’t write quickly enough by hand. Personally, I can’t focus on speaking and listening to the class while someone next to me is noisily tap-tap-tapping away at a keyboard. So, right at the beginning of the first day of class, I tell students that they’re welcome to type during class as long as they don’t sit too close to me – there’s a “no typing zone” around the front of the room where I’m positioned, and a “typing zone” across the room from me. This works for everyone – and more importantly, it immediately provides students with an example of what access needs are and how they can be civilly negotiated.

7. The Instructor Must Model and Invite
the Embodied Expression of Neurodivergence

In the classroom, students must be free to be neurodivergent, to act neurodivergent, to look and sound neurodivergent. Each student must be free to openly engage in whatever forms and styles of embodiment and movement come naturally to them, or meet their (physical, cognitive, and/or emotional) needs, or emerge as spontaneous responses to external or internal circumstances. The classroom must be declared a zone of freedom from the dominant culture’s pervasive requirement that everyone strive to constantly perform neuronormativity. Students must instead be invited to drop the performance of neuronormativity and to freely explore and indulge in the embodied performance of neurodivergence.

It is not sufficient for the instructor to merely tell students that in this class it’s okay for them to give expression to their neurodivergence. Sociocultural pressures to perform neuronormativity are lifelong, pervasive, and insidious. By the time people are old enough to end up in a college classroom, they have almost always internalized these pressures to the point where they habitually police themselves and engage in the performance of neuronormativity even in situations in which it isn’t explicitly required of them by any external authority. That’s how enculturation works, and how internalized oppression works on an embodied level. Internalized normativity is a powerful force, especially when engrained into habits of embodied performance.

Thus, in order for the classroom to actually function as any sort of zone of liberation from compulsory neuronormativity, it is necessary for the instructor to explain all of this – to explain how the dominant culture entrains us all toward the performance of normativity, and how this performance becomes internalized and habituated on a bodily level, and how breaking out of that shell of normative performance is an essential component of self-liberation. It is necessary for the instructor to explicitly declare the classroom a zone for free experimentation with shedding habits of normative performance and actively exploring, practicing, reclaiming, and cultivating non-normative modes of embodiment. And it is necessary for the instructor to personally practice what she preaches: to personally, physically model the embodied expression of neurodivergence. The autistic instructor must move like an autistic person, must freely and visibly follow her natural movement impulses in the classroom. Most students simply will not dare to engage in such exploration in the classroom unless the instructor leads the way. And this means, of course, that in order to be qualified to teach in a way that liberates others, the instructor must do the work of self-liberation on a bodily level.

Conducting the class in this manner is obviously both liberatory and educational (it’s fascinating and edifying to observe the many different forms and styles of movement that gradually emerge in the classroom). What may be less obvious is that this is as much about access as about liberation. To whatever extent they think about access needs in the classroom at all, most people tend to think in terms of eliminating physical barriers (e.g., by providing wheelchair access, captioned videos, or lighting that doesn’t trigger seizures), or accommodating atypical learning styles (e.g., by giving dyslexic students extra time on quizzes). Both of these, of course, are essential forms of accommodation. But freedom of embodiment is also an access need. A student who must constantly exert her energy and attention toward passing for “normal” – i.e., performing neuronormativity rather than allowing their natural neurodivergent styles of movement and embodiment to come to the surface – is a student who has less energy and attention available for the tasks of learning and creative participation. Students can be better students when they’re given the space to move in the ways that are optimal for the functioning of their particular neurologies, rather than the ways that are required for the performance of normativity.

Here, again, conflicting access needs can be openly negotiated in class as part of the learning experience. If one student needs to drum her fingers on the desktop and another needs quiet, then perhaps the drummer can place a folded scarf or other article of clothing on the desktop to create a quieter drumming surface. If one student needs to stand up and make dance-like full-body movements, and others find this visually distracting, perhaps a corner of the room that’s outside of the visual field of the seated students can become the designated dancing space.

Just as intentionally liberating oneself from the culturally ingrained and enforced performance of heteronormativity is sometimes referred to as queering, intentionally liberating oneself from the culturally ingrained and enforced performance of neuronormativity can be thought of as neuroqueering. To invite the embodied expression of neurodivergence in the classroom is a way of neuroqueering the classroom space, and an invitation to students to engage in the practice of neuroqueering. The concept of neuroqueering represents a rich and important intersection of the fields of Disability Studies and Gender Studies, and, on top of its other benefits, introducing the practice of neuroqueering embodiment into the classroom is an excellent way to introduce neuroqueering as a concept.

In Conclusion

The present state of autism-related discourse, theory, and praxis in the academic and professional spheres is deplorable. The discourse and theory reflect a level of ignorance and bigotry that would be regarded as scandalous in most academic circles today if it involved any other social minority group. The praxis generated by this shoddy discourse and theory consistently makes life worse for autistic persons and their families; the situation is so bad that harm, degradation, and trauma suffered at the hands of therapists, educators, and other professionals has become one of the most consistent and pervasive themes in the writings of autistics. This whole sorry state of affairs can be traced directly to the dominance of the pathology paradigm, which assumes as a starting premise that autistic minds and lives are intrinsically defective and inferior. There is simply no way to generate good theory and praxis by clinging to unsound and bigoted assumptions.

Substantial change for the better will only come from abandoning the pathology paradigm and making the shift to the neurodiversity paradigm. For such a shift to happen, the next generation of professionals must be educated on autism from a perspective based solidly in the neurodiversity paradigm, and must be inoculated against the pathology paradigm by being trained to recognize and critique it as a manifestation of cultural prejudice possessing no more scientific validity than any other form of bigotry.

The seven principles I’ve delineated are intended to serve as a foundational set of guidelines for creating college courses that provide this sort of critical education on autism. It is my hope that sharing these ideas will encourage the creation of many other courses in other schools, built upon similar principles and with the same intent to prepare new generations of students to be active participants in creating the much-needed shift from the pathology paradigm to the neurodiversity paradigm in the academic and professional discourse on autism.

 

NeuroFly

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