WITHIN AND YET OUTSIDE THE SPECTRUM: LETTING GO OF TRYING TO DEFINE AUTISM
-by Imọlẹ
I’m an undiagnosed autistic person, and this is a very wondrous place to be. It’s a place where you don’t yet have the official approval stamp of a mental health institution—and, in many cases—know more about autism than most mental health professionals. You know it from the tons of research you have done just in order to try and understand your many selves that seem to bump up against societal expectations. But also, you know it intimately. You know it from within. Your own embodied experience—and, in many cases—the experiences of your autistic environment. I can easily count on one hand people I know who have an official diagnosis, and on the other, autistic people who don’t. It’s a place of liminality that carries within it the potential for collective liberation because of its potential emancipation from societal constraints. I desire for us all to break out of the myth of “normal” and embrace anti-capitalist, slower and more embodied ways of living that aren’t just beneficial for autistic people. One of the very shared struggles of being autistic is the difficulty of working a “normal” 9-5 job. Yet, why on earth have we even accepted that there’s no other way to organize work, distribute resources and support people with different abilities?
If you are BIPOC (Black, Indigenous and/or Person of Color, which also includes mixed and multiracial people like me); if you are non-binary, genderfluid or agender (bingo); if you are a cis or trans woman or man and in any way don’t fit stereotypical gendered expectations (I don’t); and also if you are no longer a child/teen but an adult; it is very difficult to get diagnosed with autism, almost impossible even, unless you already know you are autistic and advocate for yourself. That’s the reality of those who fall within and yet outside the spectrum.
Autistic people who realize they are autistic don’t really do so on their own but through the support of their community—be it through friends, family members, books or autistic people online. As one autistic friend has beautifully affirmed me: “You’re not self-diagnosed. You’re peer-reviewed.” Another phrase that has changed my view on autism and the stereotypes surrounding it is: “If you’ve met one autistic person, you’ve met one autistic person.” Autism doesn’t just look like a young white cis boy who plays with trains, is a mathematical genius, might become a coder or programmer, screams a lot and angrily throws his toys around. It can look like a Black, empathetic, shy adult who is into social justice and make-up, too. The strong tendency of autistic people who are perceived as women during their formative years to lean towards having a special interest in psychology and understanding human behavior might have a lot to do with patriarchal expectations and with the lack of acceptance of women and femmes being asocial nerds who are into, say, science-fiction and music production.
When someone tells me that they might be autistic, I have no right to question them about themselves. Yet, this is what many people do, even and especially educated mental health professionals. I was misdiagnosed with BPD (= borderline personality disorder). Many autistic women, femmes and (queer) men are. The borderline symptoms are often what an autistic person in distress appears like. There’s also a very fine line between BPD and PTSD (= post-traumatic stress disorder). For people experiencing colonization, racism, patriarchy and genocide, there is often no “post” to their trauma. Borderline symptoms also show up as the consequence of patriarchal, capitalist, ableist and racial trauma. The label of borderline is more an invention of biased white cis men than actually rooted in scientific evidence. It’s the modern version of calling women and femmes “hysterical”. I’ve been told: “You have so much empathy. You can communicate. You are so social. You cannot possibly be autistic.”
The only reason someone would want to question someone else in exploring autism as an experience they have is if they are more interested in strict definitions and being right than supporting that person in their well-being. However, the journey of understanding oneself in relationship to the world is not about being right. It is about learning and growing. It is also always in flux. In a few decades, we might have completely different understandings and a different language around what we now call autism spectrum “disorder”. In my opinion, learning one has autism is about learning that it is valid to have needs that diverge from others. Labels matter a lot less to me than how they can help someone release shame — this sense of “there’s something inherently wrong with me”. If we lived in a world where having different needs around communication, learning, processing information, and sensory needs (etc.) was okay, would we still need the label of autism? Maybe. Maybe not.
Imọlẹ (he/they, she*) is a student of film, theatre and media studies as well as comparative literature at the University of Vienna. They have a newsletter called Mixed Magic where they share their experiences as a Black, mixed, queer and autistic being: www.joyfromvienna.substack.com. They also offer 1:1 and group sessions over www.embodied-learning.com that attempt to create spaces for anti-capitalist ways of living.