Community Diagnosis: Breaking Apart the Self/Professional Binary
I recently realized that I have been in the Autistic community for almost a decade. This is a strange experience for me, as I perpetually feel like a newcomer to the community (despite, at the risk of self-aggrandizement, years of engagement, advocacy, and community-building). While I have been Autistic my entire life, I count my entry into the Autistic community as the moment I first became aware that I, personally, might be Autistic. This moment was in the fall of 2012, my first year of high school, during which time I made friends with an Autistic classmate who at one point asked me point blank if I was also Autistic. I did not know how to answer.
It was not as if I’d never encountered the idea of autism before. I’d had plenty of interactions with Autistic people, and had certainly been punished for expressing myself as an Autistic person. I had connected well with classmates and peers that I later learned were also neurodivergent, but had never questioned why I got along so well with them. When my high school friend asked me if I was Autistic, it was… honestly, it wasn’t much of a lightbulb moment or revelation, but it did stop me in my tracks for a brief second. Eventually I responded that I was just a bit of a nerd, but my friend had planted a seed, which lead to my formal diagnosis three years later.
In the Autistic community, there is a framework of self-diagnosis and professional or formal diagnosis. This framework is often presented as a binary, when in fact it is anything but. I knew that I was Autistic well before the neuropsychological evaluation that unlocked access to supports and resources I needed, but at the same time I was not the first one to know this about myself. I choose to refer to my experience as community diagnosis.
I have noticed that this is a recurring event in Autistic communities. Someone enters a space populated by Autistic people — or even a neurotypical-majority space with even one or two Autistics — not knowing that they are in fact Autistic. Due to their words, actions, or experiences, other Autistic people accurately perceive this person as a fellow Autistic. They may choose to relay this information to the unrecognized Autistic, or they may keep their observation to themselves (possibly thinking the unrecognized Autistic already knows their neurotype), but they recognize the newcomer as part of the community and treat them as such. Over time, this can lead to the newcomer’s increased self-awareness of being Autistic, which might lead to further experiences of self- or professional diagnosis.
If community diagnosis often leads to self- or professional diagnosis, then why name it as community diagnosis? Why not let self- and formal diagnosis stand as categories? Given the state of online debates over the validity of self-diagnosis, it is imperative in my mind both to break the self/professional binary of diagnosis and to emphasize the role that a supportive community can play for an unrecognized Autistic person.
The self/professional binary of diagnosis is harmful to the Autistic community. It flattens the diversity of Autistic experiences and creates a hierarchy of legitimacy. As someone who has been formally diagnosed by a neuropsychologist, my identity as Autistic is no more or less legitimate than someone who has “only” known their neurotype through self- or communal discovery. My ability to access professional assessment largely comes down to luck, resources, and some societal privileges, which leave out large groups of Autistics. In breaking apart this self/professional binary of diagnosis and emphasizing the communal nature of my experience, I reject the idea that my luck of the draw means I am more entitled to the Autistic community than someone without my luck, resources, or societal advantages. At the same time, as someone who was formally diagnosed in my late teens, I must also respect the wisdom and support I received from the Autistic community in the years prior to my diagnosis.
My experience in particular falls in a strange middle ground between formal diagnosis in childhood and formal diagnosis in adulthood, which has helped shape my view of diagnosis as a set of experiences rather than a binary. The common narratives of formal diagnosis tend to place professional assessment at either 3 to 5 years of age at the request of the caregiver[s], or anywhere from the 30s onward initiated by the Autistic person in question. I have met very few people who have experienced what I have — an undiagnosed childhood, followed by a professional diagnosis that, while still initiated by me, had to meet with the approval of caregivers. Being in adolescence, I had the self-awareness to recognize my need for supports, but not the legal agency of an adult to pursue those supports autonomously. In the years between my initial self-discovery and the formal assessment of my late teens, I relied heavily on the support of peers and mentors with whom I found community.
Autistic people taught me about myself. Autistic people taught me how to understand the way I move through the world, how I react to stress, why I have always felt separated from those closest to me. Through online fora like Tumblr or Twitter, and through publications in print and e-book format, I began to learn about myself in ways I’d previously thought I never would. I did not come up as an Autistic teenager on my own, despite the stereotype of Autistics as isolated and unfriendly. In my view, it would be disrespectful of these peers and mentors to claim that hard-won wisdom as purely my own. I owe an immeasurable debt of gratitude to those who first identified me as potentially Autistic, and to those who helped me learn how to advocate for myself and to adapt the world to fit my needs while I fought for a formal diagnosis.
Sometimes, it seems the Autistic world is split between those who cleave to the medical model, and those who don’t (and place different kinds of diagnosis in a hierarchy accordingly). I find myself somewhere in the middle, as someone who has experienced many kinds of diagnosis firsthand. Self-diagnosis is wonderfully empowering, but there is an inherent fallibility to self-assessment. By nature, we cannot be fully cognizant of the intricacies of autism as they manifest in ourselves. On the other side of the coin, professional diagnosis uncovered aspects of myself that I did not have the self-awareness to discover on my own, but the process was dehumanizing in the extreme. While these two models of diagnosis complement each other extremely well, they also typically miss a vast grey area into which many members of the Autistic community fall.
There are ways to emphasize Autistic autonomy and the capacity for self-assessment while still recognizing the role that external community members often play. Accordingly, there are ways to honor the gift of external recognition while simultaneously acknowledging the individual’s active claiming of Autistic identity. The idea of community diagnosis hinges on recognizing both of these statements as true. Members of the community may light the torch, so to speak, in the newcomers’ understanding of themselves as Autistic, but in order for the community diagnosis to take hold or be complete, the newcomers must respond to that by claiming Autistic identity for themselves, either in private or in public.
There are as many ways to come to the claiming of an Autistic identity as there are ways to be Autistic. The self/professional binary of diagnosis needlessly stratifies the Autistic community into hierarchies of community, minimizes the role that community plays in the formation of Autistic identity, and fails to describe the experience of the vast majority of Autistics. Community diagnosis, as well as other models of diagnosis that are as of yet unnamed, represents one potential avenue through which we can collectively dismantle this false binary.