Less than three weeks remain until I’m off returning to Connecticut, back to my own bed; for the first time, I have no true exams, only papers and projects, and I am beyond thrilled. For now, though, I am stuck in the midst of projects for each of my classes, but working particularly (and, some would argue, unnecessarily) hard at my independent study, which you can get a sense of here. (When not writing furiously, I can be found vigorously discussing its contents with my friends, such as Madeline, who wanted a shout-out in this post).
I’m debating as to where I might like to publish it, when, and how –– it’s quite long and still growing, and I would love to publish it as a standalone work, but see immense value, too, in sharing parts of it on a variety of platforms. I will need to do more looking, but seriously, this is a pretty exciting problem to have –– I never thought I would have written so many words on such a subject, but then I remember I’ve written a life on it, and continue to, so feel a little less surprised. As always, if you have any tips, let me know! I recently received a message from a total stranger and writer who happened to read one of my personal essays and, at the risk of sounding intolerably corny, it meant the world to me.
On the subject of stories and lives, given that it’s autism acceptance month, I wanted to talk a bit about being autistic, and the immense feelings of pain and hesitancy, interspersed among great waves of joy and relief, that I experience/d upon receiving my adult autism diagnosis in 2017, when I had been an adult for all of a month. I had, at the time, just taken on a battalion of new medico-psychiatric professionals, primarily in pursuit of a mastectomy, which I received about year of bureaucratic whiplash later.
At the time I received a formal diagnosis, I had been toying with autism, in regard to myself, for almost a decade. I was actually just speaking to my mother about this today: as was the case for a reasonable number of autistics, one of my first special interests –– which I view as interchangeable with and analogous to those “hyperfixations” identified in people with ADHD, as I also view ADHD and autism as cousins (few “non-academic” disability resources better than Mel Baggs’s blog exist, please take a look) if not as dual reflective surfaces of the same non-normative mirror, whose differentiation says more about the diagnoser than the diagnosee –– was autism itself.
I took quizzes religiously: “empathy tests,” “Asperger’s” tests (this was the DSM-IV era) and more. I read symptom lists on my bukly Toshiba, the first laptop I ever owned. I scored high on the online tests, which admittedly tells me little when it comes to whether autism is relevant to my life. What did tell me a great deal, however, was my immediate and intense attachment to and identification with online autistic communities and the niche experiences described therein. I have known, formally, that I am (marked as) neurodivergent since before I knew there existed such a term. Diagnoses have always been a part of my life, as have therapy in varying forms and for varying reasons. But throughout all of this I felt such an immense blockage between myself and autism.
Soon it would become very clear to me that this blockage was by design, not my own but of the diagnostic culture surrounding all disability but especially “childhood” neurodivergences like autism and ADHD. From medico-psychiatry, there is the impulse to retain control over who is and is not marked as afflicted by these so-called epidemics; by extension, this allows them and other bureaucratic structures to maintain control over legal, educational, etc. accessibility concerns: only “real autistics,” for example, would need to be granted appropriate accommodations within this system. From the perspective of those autistic people who themselves reify professional diagnosis as the only path to self-knowledge, there exists the ridiculous belief that, somehow, diagnosis was invented and bequeathed upon them for their benefit, rather than for the convenience and edification of medico-psychiatry and other institutions.
And let’s not forget the discourses of epidemic themselves, which foreclose the possibility of self-diagnosis, too. How could one choose to self-diagnose –– that is, decide that this or that form of neurodivergence, as an identity, community, and experience, is one worthy of choosing to affiliate with –– if that thing they are self-diagnosing with is also framed as an evil disease, even an outside entity that is framed by eugenic [current link, does not explicitly list cure as goal] (alt) [alt. from late 2017, lists cure as goal] organizations like Autism Speaks to “possess” formerly-neurotypical children?
Autism Speaks –– A$ –– understands autism as a target to be seen, as in, captured. It is not an identity or affiliation, but a problem to be solved. By this logic, if autism remains unseen (and A$ regards autism as a single, immutable, biological reality that leads to an inherently-worse-off life, although it is unclear whether the notion that the child’s life will be “worse” with it was considered, as A$ directs the overwhelming majority of its concern to the neurotypical parents of autistic children) it must not be autism, because all autism will inevitably, and early-in-life, reveal itself within the “afflicted” child (this, we see, is analogous to what I’ll call “trans-inevitability discourse”* .
If “the professionals” can no longer be trusted to identify each and every autistic child in their early youth, intervene early so as to stem the epidemic, and ultimately mold the autistic child (via abusive therapies which can, in hours per week, occupy as much time as a full-time job) into a quasinormative adult, this would render autism and other neurodivergencies “unfixable” and even –– gasp! –– made up. If there are autisms that go undetected, autisms that can be tools of affiliation rather than diagnoses for treatment, this fundamentally undermines the use of autism as a medico-psychiatric tool.
[Autism] gave me the heuristic to use to sum up my identity, limitations, and possibilities in one word, without containing its spilling edges. This is the power of language, and is the power of diagnostic self-determination. It is needed in the way all other forms of self-determination and self-naming are, if not more so.
Formal diagnosis granted me long-longed-for permission to move through autistic spaces and interact with autism-geared content without fear or shame, even if it’s hard to call myself autistic, point blank. It gave me the heuristic to use to sum up my identity, limitations, and possibilities in one word, without containing its spilling edges. This is the power of language, and is the power of diagnostic self-determination. It is needed in the way all other forms of self-determination and self-naming are, if not more so.
Still, the effects of wider attitudes toward self-diagnosis are felt by everyone. Today I still feel inadequate as an autistic person, and am sometimes still told by outsiders that I am not one. This is what happens when, among other things, you have been coercively girled from childhood onward, when your specific traits go less recognized than those of people who are coercively boyed. This is what happens when you are marked, if anything, as “high-functioning,” meaning “possessing the capacity for individual, capitalistic productivity as evidenced by academic performance and later career performance”. It’s hard for me to say, without qualifiers, that I’m autistic, even though I know the label itself, like all others, was an invention whose recipients make and unmake its multiple meanings every day. If I am autistic, this is what autism is.
*The belief that trans people are born, remain, and will fulfill a certain sort of normative-transness that generally looks like sexgender normativity and heterosexuality. This also involves a specific array of raced and classed attributes, including the money to purchase normatively-gendered clothing, shoes and makeup, if applicable, and access surgeries and hormone treatments that are viewed as necessary and constituent of correctly-trans bodies)