I received a diagnosis of autism, ADHD, and OCD a few years ago after I started grad school. PTSD would soon follow. I had been in and out of counseling for over 10 years, where the only labels I was given were anxiety and depression. I now feel pangs of rage when I meet someone else with just these labels. It seems to be clinical shorthand for “you’re welcome to pay us but we find your problems unworthy of further consideration”.
Though I was proactive in seeking care once I had access to the University’s services, I was and am privileged to have access to these services. It was also a privilege that I was able to “speak the language” to get the triage counselor to put me with the psychiatry clinic. Other friends, particularly my black lab mates, are sent to “group counseling” for other black women. It’s a way to push them out of the service pipeline to make more room for white kids. And it’s presented as progressive culturally competent service delivery.
My intention was to have a care team established in case I had a crisis induced by the pressures of grad school. I was incredibly lucky. When I finally brought up that I was curious I might be autistic, my psychiatrist had already written it as a possibility in her notes. That’s extremely rare — to have someone recognize you like that.
I had been curious about it myself for several years before then. By the time I brought it up, I was certain, but I needed confirmation to stop gaslighting myself. Despite my psychiatrist and counselor’s support, the diagnostic process was still very difficult and contentious. A diagnostician rejected my diagnosis, saying that I couldn’t be autistic because I was too expressive and had too much interpersonal success. (I had a husband! Autistic people can’t possibly get married and have children! \sarcasm).
My Psychiatrist and my Counselor were able to confirm the diagnosis with the data the diagnostician had collected. The very same data he said did not corroborate my diagnosis was actually clearly affirmative of it. He had even tried to dismiss my ADHD and OCD diagnosis, which my psychiatrist had already given, and was more than qualified to do so. To be honest he was dismissive of me from the start. This is something we see in the literature — clinicians decide within the first few minutes what you are and they very rarely allow the data to dissuade them from their original assumptions (references below).
Despite the trouble getting to it, I was very relieved to have this context for myself. So many troubling, upsetting, confusing things made sense. So many aspects of myself that I was taught by society to loathe suddenly became things that fit, that belonged, that I was allowed to embrace, own, and respect.
We grow up feeling disconnected. Out of phase. To come into a community of people who accept all the little things that used to get you ostracized is invaluable. It would be massively overstating it to pretend like we all always get along with each other. It’s a community just like any other. We don’t all like each other. We are just as susceptible to misunderstandings and conflicts as any other group of people. But we have a common purpose. To work in collective solidarity within and across our marginalities to support one another and create a better future.
So, you might think that with this story, of being “undiagnosed” and a “woman” that I would agree that there is a problem in research and diagnosis that is creating a “girl gap”. This girl-gap supposedly exists because autism is different in girls. And we haven’t studied it enough.
This interpretation of the diagnosis disparity, frankly, isn’t accurate or useful. The diagnosis disparity is a consequence of (cis)sexism, racism, and classism. The diagnostic measures are heavily biased from samples of predominantly white, middle class boys. This has consequences.
Here is an example: A boy that spins is seen as behaving aberrantly. A girl that spins is just dancing. A boy that lines up his toys isn’t “playing right”. A girl that does it is just playing house or fashion show or whatever. A boy that doesn’t make eye contact is socially delayed. A girl that averts her eyes is shy and demure, just like the patriarchy likes her. A boy that has emotional outbursts is in serious need of intervention. A girl that does it is just sensitive and hysterical.
The questionnaires have obvious bias toward white boys evident in the very text. Questions about mathematics proficiency completely ignore how girls of all neurotypes and also racialized children of all genders are socialized to believe that math is inherently harder for them. This affects how they develop math competency. Questions about systematizing all give examples of white-masculine coded interests. Car parts, makes and models of trains, licence plates… all ignoring how the kinds of toys our culture gives children are inherently linked to the interests they are “allowed” to develop. So a girl may develop the same sort of systematizing interest in franchise characters, or sewing, or cooking, or story books, but it isn’t regarded the same way because of how misogynistic we are.
They are also extremely biased against autistic parents. Autistic parents often “inaccurately” report symptoms because phrasing like “has normal eyecontact” is meaningless when you do not… have … “normal eyecontact”. Questions about behavior that is “extreme” or “too much” or “overreactive” don’t get answered the same way by someone who doesn’t see those behaviors as a problem or even unusual. How does someone overreact to a vacuum cleaner? Vacuum cleaners are terrifying.
And so, I believe the “female phenotype” of autism is bullshit. It’s a bandaid overtop a gaping cavern of sexism. And it also has consequences that harm autistic girls and transgender autistics. A friend of mine had their child passed up for an autism evaluation despite the fact that the clinic was competent in this “female phenotype” — because their child hadn’t socially transitioned to a girl yet. The next year, the child was dressed in the clothes she had always wanted to wear, with her new long hair, and her new chosen name, and the same clinic recognized autism in the same child, over a year later. She was just as much an autistic girl the year before.
So yes there are differences in how boys and girls may present, but these are deeply entwined with how gender stereotypes are imprinted on our children and how we interpret what we see based on what we believe the gender of the person we are observing to be. Pretending there is some sort of boy autism and girl autism is reductive, harms transgender people, and ignores the larger problem – diagnosis cannot exist in a vacuum of society and culture. Until we attend to the full diversity of autistic traits in confluence with gender, sexuality, culture, ethnicity, race, class… Until diagnostics is held accountable to the implicit bias of the observer… we will continue to miss people and they will continue to feel lost.
I mentioned earlier that diagnosis is biased by underrepresentative samples, by biased phrasing, etc. I hope I have begun to make a case that this bias isn’t just accidentally manifested in the measures, it comes from the researchers and clinicians themselves. Our biases inform our research inquiry and our data collection and interpretation. We cannot fix the diagnosis disparity simply by inventing new measures and sorting bodies by which measure we believe they should be assessed by. We are responsible for our internalized biases and how they shape our interpretation of others.
I can give you stacks of studies that describe their participants, acknowledge that they are all boys, or mostly boys, predominantly white boys, and then will cite the diagnosis disparity as justification. “Well, all our participants were boys, but 3:4 autistic people are male so it’s expected.” No. No that isn’t how this works. We understand this gap to be a disparity now, rather than a natural difference in prevalence. So we owe it to autistic people to be accountable to that. Reserve slots in your studies for autistic people of color, girls, nonbinary folk. If you can’t get a balanced representation in your participant pool, then you must acknowledge that there is a limitation in your study — in that the conclusions can only be generalized reliably to other white autistic boys.
Research into new screening tools must not proceed without balanced participant pools. Priority must be given to understanding autism cross-culturally. Black autistic people deserve recognition, support, validation. You want to talk about a masking “problem” in autism? Do you know what code switching is? Black autistic people have LAYERS of shit they have to do to stay safe in our society. All people of color do, and they all do it differently depending on the collective assemblage of their race, ethnicity, gender, sexuality, class, and co-occurring conditions.
If we focus exclusively on increasing equity of the participation of girls in research, this often “defaults” to cis girls, and to white girls especially. We can’t afford that. We solve the disparity for white girls, there’s still millions of autistic people out there without the support and validation they need. We solve the diagnosis disparity cross-culturally, we still have huge problems in the direction of research inquiry — seeking cures, seeking causes, seeking more “effective” normalization interventions? This is eugenics. It’s irresponsible to endanger more people by identifying them in a climate that seeks to destroy them.
We have to work concurrently to close diagnosis gaps AND develop empowering supports that protect autistic rights to autonomy and self-determination. Autistic people are materially and existentially endangered by poor research. All autism research should be Community-Based Participatory Research. Autistic people deserve to direct research inquiry. Nothing about us without us. Nothing can be for us that’s not by us.
- Clinician cognitive biases contribute to diagnositc and treatment errors: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5093937/
- Analysis of physician speech successful at predicting their diagnosis of their child-patients. Even before analyzing the data, the physician is changing the way they interact with the child based on whether or not they already believe the child is autistic. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4326041/
- Sasson has the most famous work about how neurotypical peers make snap judgements about autistic conversation partners, even when they don’t know if the person is autistic.
- There is no reason to assume that clinicians are immune to these effects. And they certainly don’t always have accurate knowledge of autism, even when that’s their “specialty”.
- Implicit Bias wrt Race: https://onlinelibrary.wiley.com/doi/full/10.1111/acem.13214
- Implicit Bias wrt Queerness: https://journals.sagepub.com/doi/abs/10.1177/1524839918778835
- Implicit Bias wrt Psychiatric Condition: https://www.cambridge.org/core/journals/psychological-medicine/article/disparities-in-the-management-of-cardiovascular-risk-factors-in-patients-with-psychiatric-disorders-a-systematic-review-and-metaanalysis/920247904CD23C9BEFB9F9417CFF2053
- Here’s a whole book: https://psycnet.apa.org/record/1998-07601-000