I’m presenting at Memorial’s first international Equity, Diversity, Inclusion, and Anti-Racism conference tomorrow; I’m popping the text of the talk here in case it’s useful to anyone. There’s very little disability content on the schedule, so I’m feeling a bit… ahem… under pressure.
A funny thing happened on the way to my thesis defense: Lessons learned from a mid-program autism diagnosis
In his book, Academic Ableism: Disability and Higher Education, Jay Dolmage writes that, “academia powerfully mandates able-bodiedness and able-mindedness, as well as other forms of social and communicative hyperability, and this demand can best be defined as ableism. In fact, few cultural institutions do a better or more comprehensive job of promoting ableism.” I don’t think that any of us within these institutions who identify as disabled would argue with Dolmage on this. Conversations about equity, diversity, and inclusion at the university staff and faculty level often ignore or erase disabled colleagues as an equity-deserving group. Out of the 37 abstracts shared for this EDI-AR conference, mine is the only one that explicitly uses the word “disability.” Obviously, there is a gap to be filled.
Statistics Canada’s most recent findings suggest that 27% of Canadians identify as disabled, a number that will surely grow as we come to reckon with things like the long-term effects of COVID-19 and the health impacts of trauma, and as we develop more expansive diagnostic criteria for neurodivergent conditions like autism. My diagnosis is part of that expansion of criteria; I grew up in the 1980s, when only very particular presentations of autism caught the attention of teachers and doctors. Like many white women, I was misdiagnosed with anxiety and depression through much of my life. I specify “like many white women” here, because gender and racial medical bias play huge roles in outcomes for autistic people. While white autistic women are often misdiagnosed with mood disorders, Black autistics across genders are often misdiagnosed as having either mood disorders or conduct disorders, and are less likely than their white peers to ever receive a correct diagnosis.
Like many autistic adults, I figured out I was autistic when one of my children was flagged for screening. At that time, I was almost two years into my doctoral program here at Memorial. I wasn’t able to access assessment for myself for some time and, despite my best efforts to find a way to have the costs covered under MCP, I ended up having to go through a private clinic and pay out of pocket. Early during my quest for assessment, I spoke to a young medical resident who was reluctant to follow up on my concerns because I was a mature PhD student who “made good eye contact” and presented myself cheerfully. To this doctor, I was too “normal,” and, crucially, too “successful” to be disabled. I had to tell him that my apparent ease in the clinic was the result of obsessive scripting and rehearsal, which had begun the moment I’d decided to make the appointment some weeks prior.
I’m going to offer two definitions of autism – both of which I think are pretty accurate and up to date. The first is from The Buckland Review of Autism Employment: report and recommendations, which came out in UK the at the end of February. That document defines autism as:
a lifelong developmental condition that can occur at all levels of ability, across all social classes and ethnicities. It is a spectrum condition and often occurs in combination with other conditions, including ADHD, learning disability, dyslexia, dyspraxia, dyscalculia, speech and language difficulties and mental health conditions.
I think this is an accurate and objective view of autism from the outside, but it doesn’t really capture what autism feels like from the inside. For that, my go-to definition comes from Elizabeth Fein, who describes autism as:
more like color than like color-blindness – it’s a thing that happens between sensing bodies and sensuous worlds … I have come to think of [autism] as a mode of engagement with the stuff of the world – a way of being with one’s surroundings. In particular, it is a form of permeability, of deep existential vulnerability, to the order of things around us…
To me, autism feels like being plugged in to every bit of sensory input in my environment. There is a great cognitive burden that comes with this plugged-in-ness; a 2013 paper by Velásquez and Galán found that autistic children’s brains produced 42% more information while at rest than did those of their non-autistic peers. This brain activity doesn’t mean that autistic brains are always producing useful information, but it does mean that our inner worlds can be very, very noisy, and often in competition with the data coming at us from outside: the directions, the conversations, the instructions, the sensory input.
When I eventually did come out as autistic to members of my faculty, one of the most common responses I heard was, “well, if you’re autistic, then so is half the department!” If you’ve read a single listicle of “things not to say to an autistic person,” you’ll probably have found that “well, we’re all a little bit autistic” was somewhere near top. While the non-autistic person saying it thinks they’re offering some sort of gesture toward shared experience, the autistic person on the receiving end can only ask, “if we’re all a little bit like this, then how I’m the only one who can’t cope?” Most people are, in, fact, not “a little bit” autistic; indeed, a person can’t be “a little bit” autistic any more than they can be “a little bit pregnant.” Autism is a spectrum condition, but all that means is that all autistic people fall somewhere on that spectrum; the “autism spectrum” isn’t something on which all humans fall.
And yet, the remark, “if you’re autistic, then so is half the department” might have some truth to it. While academia obviously isn’t a desired or even possible path for all autistics, for some of us it can feel like a safe haven. There are few other environments in which obsessive deep-dives into hyper-niche areas of interest are not only tolerated, but are in fact a requirement of your employment. And think about the sort of eccentricities that get a pass among university staff and, most certainly, among academic faculty. The figure of the socially inept instructor who bores everyone to tears with extemporaneous lectures at dinner parties is a cliché for a reason: we have all known them, and some of us are them. An autistic academic in a faculty position can close their door and only entertain queries from students on Thursdays from 11:17 to 1:43 if they so desire; they can turn their cinderblock office into a fortress of books and nicknacks; eventually, they can create seminars tailored to provide an opportunity for them to talk, at great length, about their favourite things. Outside of their contact-hour obligations, they have license to withdraw. The pressure to publish means they can absent themselves from other engagements with an acceptable excuse; that monograph isn’t going to write itself, after all. And while there are all kinds of people for whom this life path is an appealing one, I expect we can all see why it might hold a special appeal for some autistics.
However, just because academia holds some benefits for those of us whose autism manifests in a professorial kind of way, that doesn’t mean that the fundamental ableism of the academy doesn’t cause us great discomfort, frustration, harm, and grief. Many people are familiar with the notion of the “hidden curriculum” of academia; for those of us who struggle to interpret unwritten and unspoken cues, that curriculum can be very well hidden indeed. The collegiality of graduate programs and of the advisor-student relationships therein mean that people like me can easily miss an opportunity because an advisor said, “it would be great if you could have this in by the end of February” rather than “the deadline for this is the end of February.” “Deadline” means I have a responsibility to get the thing done; “it would be great” is a total abstract. It would be great if there was good weather on my birthday, but I don’t have any power to make that happen.
The administrative demands of all of my academic degree programs were sources of intense distress. It should be noted that my initial plans to go to graduate school straight out of my undergrad in 2002 were foiled by the fact that, despite having been accepted to every program to which I had applied, I just couldn’t figure out the mechanics of how to do it – how to secure funding, how to move to a new institution, how to ask for help. When I did eventually start a graduate program here – safely back in my hometown, with a spouse to help me – the effort of applying for scholarships was bad enough, but the paperwork involved to process them felt a hundred times worse. Writing and defending a dissertation was hard, but everything between the defense and applying for graduation was almost as much of a challenge. This is compounded by the embarrassment of being able to write and defend a dissertation, but not being able to manage a fillable pdf. More “absent-minded professor” clichés, I know, but like I said: they don’t come from nowhere.
The theme of this conference is: maintaining EDI-AR momentum, and I’m going to offer two suggestions for how a greater understanding of and sensitivity to the concerns of autistic faculty, staff, and higher degree learners can contribute to a more equitable university sector for all marginalized people. The first of these is a concept developed simultaneously by two different researchers – Ralph James Savarese and Nick Walker. The concept is neurocosmopolitanism. Savarese defines neurocosmopolitanism as “not just an openness to neurological difference, but rather, a denaturalization, even a dethronement, of privileged neurotypicality.” The pulse of neurocosmopolitanism is genuine openness and curiosity about other people’s lives and experiences. A cosmopolitan person is a citizen of the world, someone who travels to Montreal or Munich or Mumbai or Mombasa not in spite of the ways that those cities, their landscapes, and their cultures differ from their own, but precisely because of them. Their difference is the draw. Within a neurocosmopolitan framework, the differences of people who are autistic, who have Tourettes or Down syndrome or dyslexia or ADHD or brain injury or who burnt themselves out on LSD are not to be merely tolerated or “accommodated”: they are to be appreciated. These people have expertise, and they are to be learned from. When we foster an appreciation of neurological difference, we open ourselves and our institutions up to appreciating and learning from all kinds of difference.
My second suggestion is that we adopt trauma-informed approaches at every level of our work, from HR to the classroom. We live in a world that cannot produce untraumatized autistics. When we talk about autistic students, colleagues, and employees we’re talking about a traumatized population. By the time many of us are diagnosed, we have accrued a lifetime of shame, embarrassment, self-disgust, and unhealthy coping strategies. Many of us become intensely sensitive to criticism, having received more of it than our non-autistic peers, often for things we didn’t know we were doing wrong. Those us who were precociously bright as children may have great difficulty asking for help, sometimes because we’ve been admonished for asking for help in the past, and sometimes because we have never truly learned how to break down a task to find out what’s going wrong. Our impaired social communication makes us more vulnerable than many others to intimate partner violence, gender-based violence, bullying, and public humiliation. Those of us who don’t receive diagnoses in childhood are survivors of what’s called hermeneutical injustice – that is, we are denied self-understanding by having crucial information about ourselves withheld from us. Obviously, autistics who exist at different intersections of marginalization – racialized autistics, minority-gender autistics, poor and working-class autistics, autistic survivors of colonial violence, multiply-disabled autistic people – will experience compounded traumas. Autistic people aren’t the only people who bring our trauma with us into our professional lives; creating trauma-informed procedures, processes, and policies will benefit people across equity-deserving groups.
I’ll end by returning to my story. My mid-program diagnosis was painful, exhausting, and demoralizing, but it also allowed me the privilege of breaking myself into my component parts and rebuilding a more authentic version of who I am. I had to ask myself questions like, “do I actually have a personality, or am I just a loose collection of symptoms and coping mechanisms?” “Am I as smart as people say, or am I just mimicking smartness?” “If my autism is the source of my academic skills, do those skills still count?” And, most importantly, “does any of this matter?” Ultimately, I suppose, it doesn’t. Autistic people are. We walk among you. We have much to contribute. Imagine what we could achieve if we didn’t have to do it against all odds.
Andreae Callanan 