As a kid, I was what you might politely call “particular.” My parents–namely my dad–referred to me as being a “princess.” This was not in the sense that I demanded everything go my way, or that I was spoiled with gifts–far from it–but more that things on my person needed to be “just so” in order to avoid triggering my anxiety and the occasional meltdown. The seam of my socks had to run across the second knuckle of my toes, or I would be able to feel it in my shoe. (Coming from a lower middle class family, the fact that all of our clothes–down to the socks–were from garage sales made this requirement often difficult to achieve.)
Belts needed to lay completely flat against my belly–and if you’ve ever worn one, you know that a smooth profile is not really a foremost concern of belt-makers (beltists?). One of my father’s favorite stories to recount was when, getting ready for school at six years old, he began to pressure me to hurry up and pick out a belt. I responded with great frustration and a brand-new (to me) five-dollar word, “Dad, I can’t find a belt that’s suitable!”
My preferred uniform was overalls: no belt required, and they felt like a little hug hanging from my shoulders all day. They were always ill-fitting on my scrawny, country-kid frame, but they were the first article of clothing I can describe as making me feel safe. I hated dresses because I couldn’t play in them, so wearing a dress marked an occasion as Very Serious–a wedding or a funeral. Despite living on three acres with no surprise visits from neighbors, I couldn’t abide the idea of wearing a sundress outside and potentially flashing anyone traipsing through our woods (which no one ever did). Overalls protected my legs in my long solo treks from the house to the river, and back to the house through the woods.
Clothes were not my only sensitivity. Upon entering kindergarten, I was as shocked as anyone to discover that I immediately developed what is known as selective mutism: try as I might to speak in class, I could barely squeak out a whisper, and even then only to my trusted friend Jasmine, who served as my mouthpiece. The rare times I dared misbehave in class, it was almost always either an accident or the result of my being heavily absorbed in what I was doing: tasked with moving the ancient projector ahead one slide via use of a clicker, I over-clicked several times out of excitement and skipped to the last slide. I got caught playing with the garage on a toy house after everyone was back at their desks; I’d been repeatedly moving the garage up and down and became hypnotized at the rhythm.
By first grade, enough people had taken notice and I was put forth for screening by one of the school’s special education professionals. I was pulled from class at the same time as a boy with clearly undiagnosed emotional behavioral disorders. When the assessor sat me down to evaluate me, she had written my first name with his last name. She asked if it was correct, and I said “yes” without a second thought. I could not correct a grown-up, and I didn’t know why I was pulled out of class–why I was suddenly made the center of attention, when it’s something I so avidly avoided while at school. I don’t remember any other part of the assessment beyond the name mix-up because I was so focused on the fact that I had been in an impossible situation: correct an adult, or lie. I’d lied. Years later, recounting this story to my father, he remembered that the school had contacted him and my mother and recommended further professional testing for an Autism Spectrum Disorder. When asked why they never followed up, he said, “Honey, it was the ’90s. What did we know about Autism?”
Despite my intense social difficulties, I was a brilliant student. I read books like my life depended on it, often well above my grade level. I devoured stories about Native Americans, pioneers, adolescent boys (such a foreign demographic to me!), magic, ghosts, and on and on. I struggled with math but adored history and was fascinated by science and foreign cultures. My tiny group of friends included the school misfits: shy kids, Native kids, chubby kids, the only Black kid in the school, girls from extremely Catholic families. We would write and mail letters to each other despite seeing one another every day. They were the only people in a school context who made me feel understood, who never pressured me to talk unless I had something to say. I still think of them often. I’m still grateful. At home, I would often cry for reasons I couldn’t articulate. It was a build-up of anxiety over constantly struggling to express myself both at home and at school.
The bitch of all of this is, when you’re the oldest child in a group close together in age, your need to grow up and take on a position of leadership among your siblings is paramount. I wasn’t good at this. I was honest without any regard for tact, and would be corrected by my parents for being “mean” when I often hadn’t realized that something I’d said was insensitive. My concerns about my body and brain and discomfort were always dismissed as my “being a princess.” Even today, I am often rebuffed in different ways by my immediate family if I bring up the possibility that major depressive disorder may not be the only thing driving some of my “unusual” behavior. As though I’m looking for an excuse. As though social situations are not actually difficult for me to read; as though I’m just being melodramatic or trying to get attention.
A little over a year ago, I decided to seek out an ASD diagnosis on my own. I felt that I had gone as far as I could with cognitive behavioral therapy for my issues, and that simply talking about things that bothered me served to do nothing but rile me up after a therapy session. I hated never being led to solutions.
At the initial interview with the assessor, he asked why I was seeking a formal diagnosis. I said plainly that I didn’t feel my current regimen of therapy was working for me, and hoped that a diagnosis that might explain my difficulties would be a valuable tool in choosing a new direction in therapy. The assessor asked me point-blank whether I was seeking a diagnosis in order to benefit somehow–to be declared disabled, to collect SSI, academic accommodations, or any other financial benefit. I told him the truth: no. If I was autistic, I was extremely “high functioning”1 in the world as it was and had no interest in benefitting from a diagnosis financially. I was given a standard battery of tests used for all adults with concerns about Autism–learning later on that ASD symptoms in girls and women often present very differently than in men. Boys and men are more likely to be autistic, so the test is tailored for their symptoms and signs. I gave extensive information about my social history and difficulties, had a trusted family member (a special education teacher, who had first suggested I try for diagnosis as an adult) fill out an evaluation form, and finally got through to testing, which felt like a long IQ test.
I struggled with pattern re-creation, and interpreted the Rorschach test rather literally: I named what I saw in the splotches, and most were animal and wildlife scenes. I aced the number memorization bits–since I was a kid, I have had an encyclopedic memory for strings of numbers, even when memorizing them served me no purpose.
Some weeks later, I was called in to receive the results of my assessment. The [male] assessor felt strongly that I had Schizotypal Personality Disorder, and illustrated his reasoning for this diagnosis. He even included in the final report that he felt that my symptoms were best represented by this diagnosis, and that any symptoms not covered by the diagnosis of a personality disorder were me over-exaggerating in order to receive benefits of some kind. I felt remarkably invalidated and I cried in his office. I was prepared to either be told that I had ASD, or that I didn’t. Instead, he had used the testing to evaluate and diagnose me with a personality disorder, and a schizoid type at that2. And I had explicitly told him at the start of the assessment that I had no interest in seeking any type of financial gain from a diagnosis–just a direction to take in therapy. He promised to send me the report via email or post (I can’t remember which). He never did.
I researched SPD extensively over the following days. And it just…didn’t fit. I was not prone to magical thinking–granted, I had a vivid imagination and anxiety that could conjur up some unlikely scenarios, but that’s what anxiety does–and I had never experienced psychotic symptoms or a detachment from reality. I didn’t have personal beliefs that were peculiar or not based in reality. I could be paranoid, but intellectually I knew this was a function of my anxiety. I didn’t believe in any way that strangers or the government or my own family was ever plotting against me3. I didn’t have an unkempt appearance and I didn’t have mannerisms or habits that were out of the ordinary. I’d never hallucinated nor experienced delusions. I didn’t require convincing that some of my beliefs weren’t based in reality, because I didn’t have beliefs that weren’t based in reality.
My whole life I had been told that none of my concerns or needs were significant enough to merit attention, and here was yet another person telling me that I was putting on some kind of show despite my steadfast assurance that I was being as honest as I possibly could. I felt deflated. And I felt strongly that the diagnosis of a personality disorder was not correct–but how credible was I now? A “crazy” person can’t be relied on to give accurate information once they’ve been labeled “crazy.”4
After learning more about the major differences in ASD’s presentation in girls and women, I have come across the self-diagnosis community. As Nicole Cliffe, a writer recently diagnosed with ASD herself at age 37, points out: an ASD diagnosis in adulthood is extremely hard to come by, especially if you are a woman. The primary struggle with self-diagnosis for me is this: I have been invalidated my entire life in regards to my mental and physical health, in ways detailed here and in ways I don’t share. I am perpetually overreacting or being dramatic, to the point that I often self-consciously make the accusation myself before anyone else has a chance to. I’m aware that there is no medication to “treat” an Autism spectrum disorder, and I don’t have a desire to be labeled “disabled” in the sense that I don’t feel a need or want from financial benefits coming from such a designation. The hard part for me is that I have been gaslit into never trusting my own instincts or self-knowledge, so how could I begin spontaneously trusting myself now?
More to come.
1 I have lately read (and agree with the fact) that “high functioning” has ableist connotations. My intention here in including the quotations is to distance myself from using the term earnestly, but in so using, to phrase the nature of my functioning in a way that is understandable to neurotypical people.
2 There is no shame whatsoever in a diagnosis on the schizoaffective spectrum. This phrasing is merely to indicate my surprise at the time.
3 These may read as pat or token symptoms we recognize from what little neurotypical society knows of schizoid traits, however, these are symptoms in fact listed on the Mayo Clinic’s website.
4 I use “crazy” ironically here, hence the quotes. In the context of describing someone with cognitive disability or mental health disorder, it is an ableist slur.