Knowing Why primarily serves as an invitation to understand the complex and nuanced experiences of autistic adults. Edited by Elizabeth Bartmess, the book collects ten narrative essays written by autistic adults who learned of their diagnosis later in life. In her Introduction, Bartmess explains the purpose of the collection as both a learning resource and a community text, inviting readers with varying familiarity with the diagnosis to better understand both themselves and those around them. Bartmess declares the narratives in Knowing Why are "part of a larger conversation going on among autistic people and sometimes autistic cousins" that "helps [autistics] come to know ourselves not just individually but collectively" (3). Each of the narratives in the collection paints an intimate picture of the author's specific experience but situates that experience within a community of others. As a whole, Knowing Why opens up the autistic experience for its audience, inviting them to engage with its particularities as well as the larger socio-political elements shaping those experiences.
One of the most important points of Knowing Why is its discussion of diagnosis, both as a function of the medical industrial complex (MIC) and as a community practice, articulating the differences between institutional knowing and individual understanding. Some of the authors in the collection have sought formal diagnosis while others have not, and I believe understanding the reasons behind those decisions is important for both autistic and non-autistic individuals. The fact of knowing whether you are autistic "helps us begin to address some of the accumulated costs of being so often misunderstood" (2). In this sense, diagnosis is a gateway to a community of similarly diagnosed individuals, whose collective experience is an incredible resource for coping and navigating individual neurodivergent experiences as part of a neurotypical society. All the authors in this collection have benefitted from diagnosis. Diagnosis has connected them to a community of fellow autistics, helped them to understand their own identity, and better equipped them to navigate and cope with neurotypical spaces.
Diagnosis can also be leveraged as a source of control, a point perhaps most directly addressed in A.C. Buchanan's narrative. Throughout the collection, several authors note the potential risks of formal diagnosis—risks to employment and family life to name a few. The authors also recognize the privilege of being able to seek a formal diagnosis. Buchanan describes this privilege most succinctly by identifying the potentially limiting factors that would impede effective diagnosis: "most obviously ability to pay, but assumptions about race, gender, and the presence of other impairments or atypicalities, can also affect the chances of getting a correct diagnosis. Requiring a diagnosis or a 'circumstance' for access to helpful technology affects otherwise-marginalised people disproportionately" (132). The evidence of Buchanan's words is evident throughout the anthology. A.J. Odasso, Morénike Giwa Onaiwu, Samantha Hack, and Amythest Schaber all share the different ways diagnosis, more specifically diagnosis as a path to understanding their own identities, is compounded by other intersectional aspects of their identities.
Buchanan effectively articulates the problems with diagnosis when leveraged as a barrier to access. The process of formal diagnosis is difficult to navigate. As Amythest Schaber states, "The trap-laden maze of the healthcare system is difficult and dangerous for anyone to navigate" (93). In her essay, Schaber shares two experiences of the MIC: first a visit to a walk-in clinic saturated with micro-aggressions from a doctor who pressured Schaber to disclose her autism diagnosis and then immediately discredited the diagnosis because Schaber doesn't "look like [she has] autism," and then an incredibly traumatic hospitalization triggered by "a severe autistic burnout" (89; 94). Schaber's experiences may come as a revelatory shock to audiences unfamiliar with the failures of medical professionals but audiences who have similarly waded through the shark-infested waters of the MIC will see themselves reflected. This recognition, and the camaraderie attached to it, are the true purpose and reward for many of the authors in this collection.
Knowing Why is rooted in a desire to share information as a way of inviting readers to understand autistic experience from autistic perspectives. It is educational and welcoming. As a whole, the collection is a wonderful resource for those interested in learning more about autism to better understand either themselves or someone else. Additionally, in an academic context, the essays could be strong examples to pair with more theoretical texts like Melanie Yergeau's Authoring Autism or other contemporary works in critical autism studies. While the narratives function beautifully as a group, they are relatively brief and could easily be excerpted to supplement discussions of particular topics. For example, Morénike Giwa Onaiwu's narrative would be an excellent starting point for discussing the intersection of Blackness, gender, and neurodiversity, and A.C. Buchanan's would be a great tool for discussing access technologies. Overall, Knowing Why is a wonderful collection that could be used both within and beyond academic spaces to help develop (or to continue to develop) more complex understandings of autistic experience.
Works Cited
- Yergeau, Melanie. Authoring Autism: On Rhetoric and Neurological Queerness. Durham: Duke UP, 2018. https://doi.org/10.1215/9780822372189