This Months’ blog post was written by Cindy Lemberg, MSW, LCSW (she/her) of Halcyon Mental Health, PLLC.
As a mental health therapist, I spend much of my time talking with people whose identities exist at the intersection of queerness and neurodiversity. For many transgender and gender-diverse (TGD) and autistic people, understanding who they are begins long before, or sometimes entirely outside of, a formal diagnosis, clinical assessment, or conversation with a healthcare provider, through lived experience, finding language that finally fits, and connecting with others who share similar experiences.
Over the past decade, research has increasingly documented a significant overlap between TGD and autistic communities, but research and diagnostic criteria tell only part of the story. For many people, online communities and opportunities for self-exploration provide something equally important: a way to recognize themselves, make sense of their experiences, and find validation and belonging.
A 2020 study from the University of Cambridge found that TGD individuals are 3 to 6 times more likely to be autistic compared to their cisgender peers. In 2022, the World Professional Association for Transgender Health (WPATH) reflected this overlap between neurodiversity and gender diversity in their Standards of Care for the Health of Transgender and Gender Diverse People, 8th edition.
There is ongoing research into potential reasons behind this overlap between neurodiversity and gender diversity, but the causes remain largely speculative.
As mental health professionals, many of us were initially trained on an outdated, pathologized view of autism. We were taught to look for specific behavioral deficits, external disruptions, or a rigid stereotype of what autism “looks like.” But human neurodiversity rarely fits neatly into diagnostic manuals designed primarily around how non-autistic observers experience autistic people.
In the United States, clinicians use the Diagnostic and Statistical Manual of Mental Disorders (the DSM) to diagnose mental health conditions. We are currently on the 5th text revision of the DSM (DSM-5-TR), and the way autism has been defined has changed drastically with each revision and update. In the DSM-I (published in 1952) and DSM-II (published in 1968), autistic behaviors in children were listed under “Schizophrenic reaction, childhood type” and were thought to be caused by having parents (specifically mothers) who were emotionally cold or distant.
Between 1968 and 2013, each subsequent update to the DSM saw massive changes to the symptomology and understanding of autism.
In 2013, the DSM-V outlined the criteria for “Autism Spectrum Disorder” (ASD) that we use today, including classifications for “Level 1”, “Level 2”, and “Level 3”. Since 2013, while there haven’t been any significant changes to the diagnostic criteria for Autism Spectrum Disorder, there has been a massive societal focus on how neurodiversity impacts marginalized and under-diagnosed communities, specifically cisgender women, gender diverse individuals, and all people of color.
Since the 1950’s, despite the significant amount of development and growth into understanding different neurotypes, the majority of that research has remained largely focused on a stereotyped presentation of autism that is specific to white, cisgender males. Only within the last ten years have we started to actually consider how being a person of color or a woman, for example, could impact the ways autistic symptoms are visible to external observers.
This has resulted in a drastic increase in the number of people (both children and adults) being diagnosed with autism, because as we learn to better recognize and validate the experiences of neurodivergent individuals, we (as mental health professionals) become more successful at assigning accurate diagnoses along the way.
However, there are a significant number of people who believe that autism is now being over-diagnosed.
It is common to hear folks make comments like, “We didn’t have ‘autistic’ people when I was a kid,” or “You just think you’re autistic because you saw it on TikTok.” A lot of times what the people making these statements are primarily referring to is the “observability” of autism.
For years I’ve encountered autistic people who tell me they’ve had providers tell them outdated things like, “You can’t be autistic because you make eye contact,” or “You’re too empathetic to be autistic,” – clearly a sign that they’ve come across a provider who is still operating under the definition of autism from the 1980’s. Our ability to diagnose medical and mental health conditions is based on the research, science, and knowledge at a moment in time. There isn’t a blood test or a brain scan available to definitively distinguish a neurodivergent brain from an allistic (non-autistic) one.
In the days of the DSM-I and DSM-II, autism was thought to be a condition that would be easily seen through visual observation of a child’s behaviors. We now understand that autism isn’t visible, but there are plenty of people (including mental health and medical professionals) who continue to believe, “If I didn’t see you before, you didn’t exist. And if I can’t spot you now, you aren’t real.”
In doing research for a speaking engagement about autism a few years ago I came across a TedxLondon video on YouTube by Tashi Baiguerra during which she stated, “Everyone experiences autism differently. You might say I have mild autism but that’s only because you experience me mildly. I don’t experience my autism mildly. Most people think of the autism spectrum as a long line with ‘not very autistic’ down one end and ‘overwhelmingly autistic’ on the other, but that couldn’t be more wrong.”
It’s so true – what we as observers or evaluators have in the past labeled “mild” or “high-functioning” autism is in reality just evidence of the significant level of “masking”- or camouflaging natural communication styles, stims, and sensory sensitivities- a person is using to fit into an allistic world.
And being a high-masking autistic person is not a “strength” to be applauded.
Prolonged heavy camouflaging forces an autistic person to suppress their natural nervous system responses and leads to autistic burnout, depression, anxiety, panic, depersonalization, worsened somatic symptoms and increased risk of suicidality. One of the reasons accurate assessment and diagnosis is important is to help support the process of unmasking – that is, removing the suppressing camouflaging tools a person has been using (knowingly or unknowingly) and allowing their nervous system to relax and function in a natural, instinctual way.
This is not as simple as dropping a facade. Rather, it can be a complex process of unlearning internalized shame and discovering one’s authentic self. It is not just observing a person’s ability to make eye contact and engage in reciprocal conversation, but diving further into the internal process and stress that person goes through in order to perform those social interactions in what are considered “expected” or “typical” ways.
For TGD and neurodivergent people, there are obvious overlaps between coming out, unmasking, and addressing internalized transphobia that perpetuates feelings of shame or guilt for just existing. These are brave and often exhausting processes of shedding a performance you had to put on just to survive in a world not built for you.
Finding your community
Whether through formal support groups, treatment providers, books, shared stories, or online spaces – isn’t about following “trends.” Community is a lifeline through which you can connect with people who understand and validate your identity, sensory world, passions, and hopefully start to heal from years or decades of feeling out of place. You deserve to exist authentically and you deserve to have spaces where you don’t have to translate or justify yourself for other people’s benefits. And above all, you are allowed to trust your own self-discovery.
References:
Baiguerra, T. (2018). My brain isn’t broken [Video]. TEDxLondon. https://youtu.be/D8j1fcQiyBU
Bradley, L., Shaw, R., Baron-Cohen, S., & Cassidy, S. (2021). Autistic adults’ experiences of camouflaging and its perceived impact on mental health. Autism in Adulthood, 3(4), 320–329.
Coleman, E., Radix, A. E., Bouman, W. P., Brown, G. R., de Vries, A. L. C., Deutsch, M. B., Ettner, R., Fraser, L., Goodman, M., Green, J., Hancock, A. B., Johnson, T. W., Karasic, D. H., Knudson, G. A., Leibowitz, S. F., Meyer-Bahlburg, H. F. L., Monstrey, S. J., Motmans, J., Nahata, L., … Arcelus, J. (2022). Standards of care for the health of transgender and gender diverse people, version 8. International Journal of Transgender Health, 23(sup1), S1–S259. https://doi.org/10.1080/26895269.2022.2100644
Hull, L., Levy, L., Lai, M.-C., Petrides, K. V., Baron-Cohen, S., Allison, C., Smith, P., & Mandy, W. (2021). The mental health costs of camouflaging: Exploring the relationships between camouflaging, anxiety, depression, and well-being in autistic adults. Autism, 25(5), 1386–1397.
Haymaker, D. M., Kutash, K., & Grasso, D. J. (2020). Having all of your internal resources exhausted beyond measure and being left with no clean-up crew: Defining autistic burnout. Autism in Adulthood, 2(2), 132–143.
Rosen, N. E., Lord, C., & Volkmar, F. R. (2021). The diagnosis of autism: From Kanner to DSM-III to DSM-5 and beyond. Journal of Autism and Developmental Disorders, 51(12), 4253–4270.
Warrier, V., Greenberg, D. M., Weir, E., Buckingham, C., Smith, P., Lai, M.-C., Allison, C., & Baron-Cohen, S. (2020). Elevated rates of autism, other neurodevelopmental and psychiatric diagnoses, and autistic traits in transgender and gender-diverse individuals. Nature Communications, 11, Article 3959. https://doi.org/10.1038/s41467-020-17794-1