Even after hitting “Publish” on this post, I still don’t know how I feel about the title statement. How it’s worded, I mean. The ideas it represents are absolutely true.
On November 9, 2020, I was assessed as having met criteria for Autism Spectrum Disorder (ASD) and attention-deficit/hyperactivity disorder (ADHD). In other words (and maybe words that I prefer), I’m neurodivergent.
I know this may feel out of the blue to some people. It is to me too, in a way, but in another way, it’s an “of course” lightbulb moment, a flashpoint, where all the experiences of my life have come together to make sense.
So I wanted to have a record of what led to this point in my life to share with you all. I am far more articulate in writing than I am in person, and with the ongoing COVID-19 risk to social gatherings (and my own inclination to spend most of my time alone), I thought this would be the most efficient way to let you all know what’s been going on in my life related to my own neurodivergence.
The Highly Sensitive Person / Sensory Processing Sensitivity
Back in the winter of 2018, I stumbled across a term I hadn’t heard before, but that explained a great deal about the way I experience life: Highly Sensitive Person (HSP). This is a term coined by Dr. Elain Aron, a psychologist, scientist, and researcher, who noticed in herself and subsequently in her studies a natural inclination for about 20% of the population to exhibit heightened sensitivities to sensory stimulation. HSPs have more sensitive central nervous systems, are more easily overwhelmed by sensory input, and tend to take longer to process new information. They have a tell-tale tendency to “stop and check” before entering new situations. Another term for HSP is Sensory-Processing Sensitivity.
I read her book, The Highly Sensitive Person: How to Thrive When the World Overwhelms You, and marveled about how all of the areas I struggled with as a child, and continued to struggle with as an adult, could be fit under this one umbrella term. (I could go into a great deal of detail here about what in particular about my life experience matches an HSP one, but for now, I’m going to stick to chronicling the general timeline leading up to the official recognition of my neurodivergence.)
I began examining my behavior, my experiences of the world, and my past through an HSP lens. A lot of things were making more sense to me, and to an extent, I was able to modify my interactions with the world and other people to be more in line with my comfort zone, which I had been blatantly ignoring or feeling guilty about not ignoring my whole life.
But after a while, I realized something didn’t feel…right. Dr. Aron talked about HSPs as having great gifts and the HSP trait as an advantage. On paper, I agreed, but being an HSP didn’t feel like an advantage to me. It felt like, well, a disability.
This isn’t a word I use lightly. I wrestled with it mentally for a long time, but the more I wrestled the more I felt that, yes, I feel dis-abled (see this fabulous TEDTalk by Autist Jac den Houting in which she says, “I am not disabled by my Autism; I’m disabled by my environment.”) by these traits that (according to Dr. Aron) are supposed to be strengths.
I strongly believe I never would have gotten to this point of understanding if I hadn’t deconstructed the conservative, fundamentalist religious influence, mindset, and worldview I grew up practicing. Some people I know might not like this, might feel off-put, might shut me out because of it, but it’s true, and it’s important. Since about 2016, I’ve been engaged in a long, arduous process of re-examining things I took for granted as truths for my entire life. Part of that has involved learning how to trust my instincts and my lived and inhabited body knowledge. That they aren’t sinful urges to be ignored or temptations to be gutted through. After spending over 20 years ignoring intuition, pushing past my own limitations daily, it’s daunting, trying to reclaim boundaries, self-knowledge, and self-trust. But I was trying. And my lived experience was telling me that HSP wasn’t it. Not all of it. I wasn’t through learning about myself. There was more work to do.
In March 2020, I reached out to a couple of local therapists who claimed specialization in–or at least knowledge of–HSP. I figured maybe I just wasn’t understanding how to work with my HSP traits, that maybe this feeling of dis-ablement could be mitigated by picking up some tips and tricks. Then the pandemic shutdown happened, and I never reconnected with them. There were more important and distracting things going on the in world.
In the summer months, I started to pick up where I had left off. I hadn’t felt comfortable with either of the therapists I’d talked to in March, so I did more googling. I stumbled across this article, which posited that HSP traits in females could really be female Autism. Following that rabbit trail, I found other sources like this YouTube channel run by a British woman who is Autistic. Like me, Sam was diagnosed with Celiac disease, identified as HSP, and finally, sought an assessment for Autism, and found she met the DSM standards to be considered on the spectrum. I found videos like this one in which Autism expert Tony Attwood talks about the characteristics of females with “high-functioning” Autism (commonly known as Asperger’s Syndrome before the update to the DSM-5 removed this label, confusing many and robbing many of an identity they’d come to claim with pride) and of the crises unidentified female Autists go through, including anxiety and depression.
I found this unofficial list of female Autistic traits. I was shocked. I identified with something like 98% of the traits compiled.
“You don’t seem Autistic.”
Until August 2020, I would have wholeheartedly agreed. Turns out, the reason I don’t “seem Autistic” has less to do with Autism and my own neurodivergence and more to do with false stereotypes of Autism that are deeply rooted in decades (if not centuries) of sexism and gender discrimination that have affected the very development of the fields of medical science, psychology, and the Diagnostic and Statistical Manual of Mental Disorders (DSM) itself, the bible of psychological “disorders” used to “diagnose” the mental “disorders” we see in the Western world.
There are fundamental differences in how individuals on the Autism spectrum may behave, but until very recently, they have not been recognized. This is due in part to the fact that, when conducting trial studies and tests, psychologists have consistently chosen cis-male subjects. For more on the history of this, and info on neurodivergence in women, I highly recommend Divergent Mind: Thriving in a World that Wasn’t Designed for You by Jenara Nerenberg. This book literally was published in 2020, and would not have been available to me if I had started this research ONE YEAR AGO.
After an intake appointment in which my assessor agreed there was sufficient evidence to proceed, waiting four weeks for my appointment, four hours of testing, two weeks of waiting for my assessor to analyze the data, I learned in a video call that I met criteria for Autism Spectrum Disorder, Level 1 (the lowest level of assistance needed; the DSM-5 goes through Level 3), what would previously have been known as Asperger’s Syndrome, and in a surprise 2-for-1, I also learned I met criteria for ADHD, inattentive type.
Here’s a distinction that’s important: I was not identified as Autistic, ADHD, or neurodivergent by the experts. At age 30, I identified myself, and then sought an expert to officially reinforce what I already knew to be true.
The medical, psychological, and social systems in my life failed me.
This is especially depressing, because as a female, the world had already failed me in so many ways. I was socialized to fly under the radar. I was socialized to “get by” without accommodation, to put others’ needs before my own, and I was smart enough that I could manage. Barely. But the resulting depression and anxiety for constantly struggling to fit into a world where everyone else seemed to fit in easily made life miserable.
I would like to note that my assessor was a lovely person. She was knowledgeable about ASD in women, and delivered the results in a kind, considerate way. At one point, she told me, “There’s nothing wrong with you.” I believe this is true. But I also believe that I am not in the category of what is considered “normal.” She expressed her desire for the day when neurodivergences are understood as a spectrum, rather than disabilities, and I wholeheartedly agree.
I still don’t fully understand the implications of this piece. I haven’t done nearly as much research here. But I do think ASD and ADHD together may explain things that look contradictory, like why I thrive on a schedule, but also have trouble sticking to schedules.
As I once again reframe my life experiences through these new lenses, I am heartbroken for the little girl I was, and for the ways my life might have been easier, better, happier. I am also viciously proud of myself for accomplishing things that were desperately hard for me. Singing the lead in a musical. Singing the lead in an opera. Traveling internationally. Graduating with my master’s degree. I didn’t know other people didn’t struggle this much or in the ways I struggled.
My hope is, with this new understanding of how I perceive and interact with the world, I can build a life that allows me to thrive, that makes me happy more often than sad, and that enables me to reach my highest potential.
I also hope I can bring empathy and understanding around the issue of neurodiversity and dis-ability. The experts and Autists I found online were overwhelmingly not-American, and I believe my country is behind on this issue. If you want to talk more with me about this, please reach out. The world is a big, scary, and unsure place. Caring for each other is what makes it beautiful.
*Minutes before publishing this post, I wonder if I’m making the right decision, sharing this information so soon after receiving it myself. I am convinced, though, that staying hidden, masked, and under the radar–the way I’ve been living for my whole life as a neurodivergent person–will not help me or anyone else, and that if I don’t act on the information I’ve received, I might as well not have sought clinical affirmation at all. And, I remind myself, if this makes me feel socially awkward or uncomfortable, that is nothing new. 😉
* This post was edited on January 3, 2021 to remove and reword language including the word and variations of the word “diagnose.” I no longer use the word “diagnose” in relation to my neurodiversity, as it implies an illness or medical condition. Neurodiversity is not an illness. I am not sick.