Please stop asking about our diagnosis.
I received an autism diagnosis in my late 30s. It was a non-event. I literally don’t think I told anyone.
I already knew I was Autistic.
I was, at the time, being diagnosed and treated by a psychologist for CPTSD (complex post-traumatic stress disorder, stemming from long-term and varied trauma), and did not then (or ever) view my neurodivergence as something to “fix.” I was also going through a divorce, move, autoimmune disease diagnosis, and career change…as a single mom. So just getting through a day without a family disastrophe felt like a win.
As well, a professional diagnosis meant less to me than it might to others: Like many Autistic people, I tend to not respect authority or pay attention to hierarchy. This tendency has done wonders for my career!**
The diagnostic process my son went through with a pediatric neurologist around the same time was much more intensive. It was also way more important because, as an elementary school student, his specific diagnosis would impact his life immensely as far as school learning, social development, and more over the entire course of his education.
As it turned out, those school years required an enormous amount of advocacy on my part, during which I came upon many things (information, Autistic activists) that enabled and empowered me to think critically about the role the neurotypically-designed/-oriented world plays in the success—or lack thereof—of neurodivergent people in all their endeavors.
The diagnostic process, for example, is fundamentally grounded in neuro-normalized values and skills; that is, the measures and tools used for evaluation are determined and shaped by neurotypical standards, which may not be shared, understood, or considered worth aspiring to by the neurodivergent human being evaluated.
A diagnosis can thus be potentially demeaning and marginalizing, even as it may feel like a clarification or open certain otherwise-closed doors for the Autistic person.
Such diagnoses are officially required for people to officially qualify for certain public/insurance/government/medical/employment/educational accommodations and/or services that exist to create equity.
But the diagnostic process is often extremely grueling for the human being getting diagnosed, as it very much was for my son. Worse, those official designations typically require further evaluation and corroboration at designated intervals or during transitions (say, from the public school system to adulthood), so that the process is partially or fully duplicated, thereby repeatedly reinforcing differences and, at best, making the humans involved feel like laboratory specimens.
I was already cooked. I had seen and made sense of myself through the lens of autism for more than a decade already, proudly considering myself self-diagnosed all along. So I didn’t expect my autism diagnosis to change anything (I did hope my therapist could help me heal some of the devastating and debilitating effects of my PTSD). I also—thinking a full neuropsych evaluation was the only way to “legitimately” diagnose autism by NT standards—didn’t feel a need to share my “new” “status.”
For many, a diagnosis feels like a validation, a structure on which to rest big feelings. Armor, in a way. For others, though, it can be a burden. Something to hide—or avoid in the first place. For most of us, it’s a mixed thing, carrying as it does all the public and private positives and negatives of any label that represents difference.
But, in contrast with the aforementioned exceptions—in which disclosure and “proof” are deemed necessary in order to receive equity-promoting services or accommodations—sharing a diagnosis (or lack thereof) is not a given or required part of the social sphere. It’s fundamentally a private matter.
Furthermore, asking us to explain, define, discuss, or defend our diagnosis (or, again, lack thereof) is just a step too far—unless we offer.
So while curiosity and the desire to better understand a person or their neurology (or neurodivergence in general) may fuel your desire to ask about our diagnosis, that interest would be better spent in doing your own research and/or just practicing plain old acceptance.
Trust me, if we want to share, we will.
Here’s a handy list of reasons why asking about our diagnosis might feel upsetting, invasive, inappropriate, or offensive, even if your intentions are good:
1. Another person’s diagnosis is nunya. What’s nunya? Nunya business. I understand that I, as a “public figure” have some responsibility to share my diagnosis, but in my personal life? Not so much. And others not in my position have no obligation to disclose their diagnosis except where personally, professionally, medically, and/or educationally necessary.
2. People make assumptions about who people are, as well as what they need and are capable of, based on almost any diagnosis or label, but especially this one. For this and many other reasons, it should be up to us to choose disclosure—or not.
3. Autism, while framed as a medical condition by some (please see the next post in this series, coming in October 2022), is actually an identity for many. You don’t ask me to prove I’m a yogi or a writer or a mom or queer or politically progressive…Why would you ask me about the corroborating details of my neurology?
4. Not everybody can afford, access, or handle (emotionally, sensorially, physically, psychologically…) the diagnostic process.
5. Putting a lot of weight into diagnosis amplifies and perpetuates the disease model of autism (again, please stay tuned for the third post in this series). Also, although it may have its uses, the word “diagnosis” itself (especially when used in interpersonal interactions) can make it seem as if there’s something “wrong” with us.
6. Self-diagnosis is largely affirmed and respected among Autistic people. Insisting on a professional gatekeeper’s opinion diminishes this neurodivergent community’s authority, as well as the validity of personal insight.
7. Asking about our diagnosis can feel othering. This is especially hard because many of us already feel like we are on the wrong planet.
8. Corollary to the statement “We are all a little autistic” is the accusation or “compliment” (from this Autistic’s perspective, both angles are equally messed up) “You don’t seem [look, act…] Autistic.” Biologically born female Autistics are underdiagnosed, and often experience and express their neurodivergence very differently from the common stereotypes of the “typical” Autistic person. Furthermore, all biologically born Autistic females—along with biologically born male, trans, nonbinary, and, in short, all Autistic people—are unique human beings, and therefore may or may not represent your vision of autism. That doesn’t give you the right to explore, never mind question, their identity and/or diagnosis.
Now, if you want to ask us—person-to-person—who we are and what we care about as a fellow human being in this challenging, beautiful, crazy, neurotypically-oriented world, go for it.
Full Spectrum Mama
Labels: diagnosis, stereotype, labeling, awareness, acceptance, biologically born female Autistic, Autistic, #ActuallyAutistic, neurodiversity, privacy, curiosity, burden, chocolate,
* A SERIES OF HUMBLE REQUESTS:
After my book came out and I began to be a bit more in the public eye, I realized there were three recurring issues I wanted to address in this safe space so that I could refer people to my opinion on the topic without having to go into it on the spot. Like many Autistic people (and others, too, I am sure), I have a hard time thinking AND feeling AND speaking at the same time.
There are certain questions and uses of language put forth mainly by neurotypical people—in my experience, not just via media outlets, but also audiences and, actually, friends—that the vast majority of neurodivergent people find extremely offensive even when they are not meant to be hurtful. In this series of three posts, I’m going to focus on three of these: saying “Everyone is a little Autistic,” asking about our diagnosis, and referring to autism as a disease, or similar.
My book with Jenna Gensic, The #ActuallyAutistic Guide to Advocacy, is full of positive, proactive ideas, but sometimes I do get frustrated—and this blog has been known to contain a vent or two. Jenna and I used to feel really anxious, and sometimes defensive, when people would call us out on mistakes we’d made (with language, assumptions, etc.), but we eventually came to genuinely see such interactions as learning opportunities. Now we explain—in our books and to our audiences, as I am doing here, now, at Full Spectrum Mama—that we are always discovering how to communicate and act in more uplifting ways.
While first writing this series of posts, I was going to call it “Stop it!” And please do stop, if you are doing any of these three things. But I took some deep breaths and changed my wording to be a bit friendlier, in hopes that lots of people will take in this guidance as helpful and heartfelt, as it was intended. After all, we are here together on this planet to learn and grow!
The above is the second in this series.