Let your prayers go drifting into space

I was raised Roman Catholic. That is to say: we went to church every Sunday for the first four years of my life, because we could walk there. Once we moved to a rural area, we became Christmas-only Catholics. I never had a First Communion, never went to Sunday school. I was baptized Catholic, and that’s the last time I had a meaningful interaction with the Catholic church. The brilliant comedian Cameron Esposito invented the term and concept of being “ethnically Catholic,” which I find quite clever and now use to identify myself. There is a culture to Catholicism that is hard to shake, especially given the fact that my generation was largely raised by people who were raised by devout Catholics.

As a kid, the concept of religion and god was a foreign one to me. To make it make sense to myself, as a tiny kid, I decided that the idea of god and the bible were stories that grownups told themselves and each other. I still have never been able to grasp the idea that there are many, many people who believe literally in the words of the bible, believe in the idea of a single patriarchal figure literally creating the universe from nothing. It’s a level of faith I cannot achieve. I would define myself largely as an atheist, with a lowercase “a.” I’m not aggressive, I don’t debate people of faith (I think it’s rude to challenge someone on their faith OR the lack), and I don’t talk down to or think less of someone with a religious faith unless they use it as a cudgel to harm others.

With those caveats firmly in place, I have found myself wanting as I’ve grown older. Wanting to believe in something, even if it doesn’t fit a conventional model of Abrahamic or any other religion. To me, what is most “miraculous” in this life is the beauty of nature. I find it incredibly beautiful that all of this could just happen because of scientific evolutionary processes. Look outside! I feel moved by the existence of the earth and all its inhabitants as completely random more than I jive with the concept that someone specific “created” all of it.

I have become more interested in reform Judaism as it relates to a view of the world and our role in it as human beings, stewards of the earth and the human race. Something I really appreciate about the Jewish faith is the belief that we should be good to one another and do good things while we are here because it is the right thing to do–not because we will reap rewards after we die. It’s the way I have always striven to live, despite my previous complete lack of faith. It’s also the only religion I know of that asks and encourages questions, and then offers answers. Not only does it offer answers in the form of the Midrash, it doesn’t present these scholarly interpretations as absolute. It doesn’t demand unwavering, literal belief in scripture. I’m in the very early stages of researching the conversion process, and have been reading the five books of Moses over the last few months.

One of my siblings has been on a similar journey: searching for faith after being raised a skeptic. They recently made the decision to start covering their hair unless they’re in a private home with loved ones. For this sibling, homemaking is a spiritual practice. I don’t pretend to understand that, but they talk of their head covering as “always having their home with [them].” Before I learned that this sibling made this decision, I had considered it myself for a little while–though for reasons far less spiritual: I thought about covering for sensory reasons. I feel so calm and centered with a weighted blanket on me if I’m stressed out, and I have always loved the feeling of being squeezed–because of autism or because I wasn’t hugged enough as a kid, one never knows (¿por qué no las dos?). I saw a woman on TikTok who was demonstrating how she wraps her tichel, and was enthralled. Something warm, gently squeezing my head? Not having to fight with my curly hair every morning? Where do I sign up?? I should note that neither hair-covering nor this Jewish woman were the impetus for my interest in Judaism; they were purely incidental. After mulling it over and talking with my sibling (and–of course–asking them to demo their covering on my head), I’ve made the decision to try out covering my hair. Still not for religious reasons, but for sensory ones. I may love it, I may hate it. But I’m kind of grateful for this endless quarantine because it has allowed me to explore so much of myself and the world in the privacy of my home.

Sharing

Tonight I made the difficult decision to talk about my autism and feelings about it with one of my siblings. They* were supportive and said that they were glad I’d told them about it. It was a bit of a relief. I still have a sibling I haven’t and may never discuss it with–I adore them, but they can be very judgmental in a way that is reminiscent of my parents, specifically my dad, when it comes to concerns about my health and well-being.

I explained to my sibling tonight that after a lifetime of being called “weird” by both my parents and kids in school (which, as a child, to be called “weird” when what you want most is to blend in, can be very wounding), I was coming to understand that okay, maybe “weird” was the best way these people could describe the way I access and process the world. But it’s not “weird,” it’s just different. I can come to the same conclusions as others, I can function in a neurotypical world with a degree of success, but I don’t move through it and experience it in the same way. In some cases I process emotions very quickly to the “action” stage, and in others I can become stuck on an initial reaction and take forever to move on.

I know I’ve said this before, but there is so much about my past and the way I’ve experienced life that is coming into such sharp focus when viewed through the lens of ASD. I think back on reactions I’ve had to information in contrast to others in the room, and for a change I feel like I have an answer for “why the hell did I react so differently from the other people there?” I’m approaching the coming winter (ordinarily an extremely difficult time for me emotionally and mentally) with a slightly revised outlook and finding myself less dismissive of my feelings–I don’t feel as ready to accept that I’m just depressed and low-functioning for a majority of the year. (I still hate the winter, though.) It is hard sometimes to know whether I am in charge of my depression, or whether it is in charge of me–I have always attributed my executive dysfunction to depression, even when I did not feel depressed. It makes so much more sense that it would be more likely to be connected to my autism, as it’s a problem I’ve had all my life–it did not start when I became symptomatic for depression.

It’s bedtime for me. Just wanted to express some thoughts.

*None of my siblings use they/them pronouns, but I’m trying to keep my blog as anonymous (for the people in my life who haven’t consented to be named here) as possible.

Special interests, or: the shit I love

I have tried to embrace more of my autistic “special interests” more during this long quarantine, and especially lately have been making an effort to refer to them as “special interests” rather than “things I’m obsessed with.” The latter sounds, to me, like they’re things I should not care about as much as I do–and I don’t think that that’s accurate. There are things that contribute to my anxiety that I ruminate on too much–that sort of thing is more accurately an “obsession” in my eyes. This post is about stuff I really enjoy immersing myself in.

Movies. I come from a movie-loving family. Movie quotes are an official language. The two people aside from me with the most prolific memories for not only movie quotes, but the inflections with which they’re delivered, are my uncle and grandfather, both of whom I suspect are on the spectrum. I love movies considered “classics,” and will study them furiously and memorize whatever piece of trivia I can about them. Westerns have a special place in my heart, despite how problematic the genre as a whole is.

Bruce Springsteen. I admittedly have not heard every work in Springsteen’s oeuvre, but after encountering him for the first time when I was fifteen, I’ve looked on much of his music as my soul’s salvation (if you’ll excuse the Boss-esque hyperbole). I can listen to certain songs of his on repeat for hours, deconstructing the lyrics in my head, feeling the longing for a fast car and an open road especially present in his early career. I’ve seen him live three times; the last time I saw him was the year my mother died. She had wanted to come with me to see him. At this performance, he finally played mine and my mom’s favorite song. It was the first time I’d seen it live. I sobbed.

History. This is a broad category, but I could read history and historical accounts all day long. Particular areas of interest are Irish history, the American Civil War, the “American West,” 20th century Latin America, labor history, and Native (American) history and culture. One of my favorite TV programs (my god, I sound like I’m 80 years old) is Ken Burns’s documentary series The West. It’s one of those docuseries you probably watched for social studies if you went to elementary school in the ’90s–interviews with historians of all stripes, sweeping views of the western landscape, excerpts from historical diaries and accounts, all with an opening and transitional score of indigenous chanting. It doesn’t gloss over the horrors that a colonizing people wrought and continues to wreak on the first inhabitants of the land, and I appreciate that.

This is a post I’ll likely add more to later.

Down with the sickness–literally

I caught one hell of a chest cold at some point last weekend and have been absolutely dosed all week this week. It’s not The Virus (I know exactly from whom I caught it, and they tested negative on Wednesday), but it was brutal. I took two days off of work to just lay in bed, and coughed so much and so hard that my ribs are sore today, two days after the worst of it. I couldn’t keep food down for days, but I didn’t feel hungry so I didn’t bother eating very often.

I become almost entirely unable to function “normally” when I get sick. Any issues with my executive functioning in my daily life are magnified by illness. I’m not able to serve as caregiver and sick person at the same time. I haven’t had someone take care of me when I was sick since I was about 9, and the best I can do for myself is get enough fluids, take some medicine, and sleep. I did force myself to shower daily, which I was proud of as I have previously skipped two or three days when I’m sick. But now the cat box needs cleaning. The produce in the fridge needs to be prepped and stored very soon because days have passed since I intended to use it. And on top of all of it, I’m still just absolutely bushed from being sick, so I’m too tired to do any of it in addition to not being able to self-motivate.

Last night I came across this brilliant article by Reese Piper on being an autistic woman. It describes me to a T. I always get a little feeling of frisson when I read a piece I can recognize myself in; it seems to happen so seldom that it feels special every time. It got me thinking about how many of my allegedly “depressive” symptoms and behaviors may actually be the result of my autism and as a result have never improved with conventional treatment methods for depression. Maybe my depression isn’t the treatment-resistant type (as I’ve started to worry over the last couple years)–maybe my most severe issues are not depression-related at all (or at least not primarily).

Finally, the last issue I’m working through today is dealing with neighbors who smoke. I have a chronic lung condition and cigarette smoke aggravates it. My building is nonsmoking, but the fellas downstairs smoke in their apartment and it’s becoming disruptive to my health. My bath towels smell of cig smoke because they hang on a towel bar right over our shared vent. I have had a cough since January that I’ve variously believed to be linked to allergies or GERD, but it doesn’t respond to treatments for those conditions. I dislike landlords and don’t want to be the reason anyone loses their housing, but I’m also struggling with how to confront them without escalating it into a “shitty neighbor” situation. I’m terrible at a cold-approach–I’m either too passive or far too blunt–and there’s also a language barrier between us. I don’t want to tell them they can’t smoke it all–that’s their business–but I just want them to stop doing it indoors. My sibling has suggested a friendly, plainly worded request in the form of a note stuck under their door. It’s the best idea I’ve heard so far, so that may be the route I take once I can work up the motivation and energy.

I am tired.

Executive dysfunction

Executive dysfunction is associated with all of the mental illness I deal with, in addition to my autism. It is one of the more disruptive symptoms I experience. It leads me to not eating, not keeping my space clean, an inability to get out of bed in the morning, and often, an inability to deal with problems until they become urgent. It’s probably the most frustrating part of each of my disorders.

Today, though, I celebrate a small victory: I made myself a “Sunday morning breakfast,” and all (3) items were ready to eat at the same time. I ate it and truly enjoyed it. All that while my brain was screaming at me to go back to bed! Cooking becomes a major obstacle for me, especially as the seasons change (winter is a nightmare for my executive functioning because my mood is the lowest it ever gets, for a sustained period of time).

I have been following a user on TikTok who is herself experiencing postpartum depression, and posts extremely simple recipes with her own narration validating her viewers’ food choices if they are struggling. It has been comforting for me to watch. Something I only began to touch on in therapy before the pandemic started was the fact that I was never validated for my concerns or choices as a child, meaning that–as I’ve mentioned–I am constantly doubting myself. As a result of watching this new mom on TikTok, I have quietly elected to start to be kinder to myself with food. If that means I buy frozen meatballs instead of browning my own meat–fine. If it means buying pre-breaded fish fillets instead of buying fish and breading them myself–great. I try not to eat too much meat, but with winter (and my significant mood drop) coming, I’m trying to take a more compassionate approach with myself and eat as healthfully as I can without exhausting myself with the mere idea of preparing dinner.

I’ll be honest, though: eating has been a major struggle lately. I often don’t have the energy to eat, so cooking is out of the question. It isn’t until my stomach starts to hurt from hunger that I’ll get serious about eating, which leads to low blood sugar and shakiness in addition to…most quick places to grab food being closed. It’s a cycle and it feels difficult to break out of. I would like to start meal planning again (if not prepping), but I want to be cautious that I’m not restricting myself and that I’m getting enough calories–another major struggle of my trying to prepare in advance, in the past. I either underestimate my calorie needs or try to restrict them from the get-go. It’s not a good relationship to have with food. I have never been anorexic, just deeply disinterested in food much of the time. That bit I can trace back to the death of my mother over 8 years ago.

I had leftovers for dinner, which means I successfully prepared (or reheated) and ate two substantial-enough meals for myself today. If I can turn this into a streak…

Finally got my ASD assessment results…from over a year ago

This was for the assessment I had almost a year and a half ago. I finally emailed both the clinician and the clinic he works for and two weeks later (today), got the report in my email.

The results are not as I remembered them being presented to me at the time I initially discussed them with the assessor. Throughout, he indicates that I have a high likelihood of Asperger’s and ADHD, but then turns around and insists that any of those symptoms are explained by my other diagnoses of persistent depression and generalized anxiety.

Schizotypal Personality Disorder is what he ultimately assessed me as having. I looked up the criteria in the DSM-V to compare it against my results and my sense of myself, once and for all.

Like the name suggests, people with SPD have similar symptoms to those with Schizoaffective Disorder/Schizophrenia, though they present as much more mild. This means that major components of SPD include magical thinking, ideas of reference (believing that certain events have a deeper, secret meaning), paranoia, odd or eccentric manners of dress and thought, and social anxiety.

There is no shame in a diagnosis of SPD or any other disorder. But of the symptoms of SPD, I experience…one. I am socially anxious. I mask this very well most of the time, and most strangers would not recognize me as having this tendency. Ironically, I think that much of the anxiety stems from the fact that I’m afraid of screwing up socially. I struggle with questioning the opinion of a trained professional, probably for good reason. But I feel very strongly that an SPD diagnosis does not accurately reflect my experience.

I don’t experience delusions or “ideas of reference.” My primary issues relate to appropriate social and emotional expression and sensory input, and even then, “odd behavior” isn’t something I outwardly exhibit or internally consider.

I am arguing with no one, here. Just typing out thoughts. A diagnosis of Asperger’s (which I know is being gradually transitioned into being referred to as simply “mild autism”) makes the most sense to me. I can conceive of an ADHD diagnosis as well, however, I know that autistic people are often misdiagnosed with ADHD, and vice-versa. To my mind (and the extensive reading, research, and experience with autism “up close and personal” through my work over many years), my sensory problems make Asperger’s more likely than an attention disorder.

There’s often a genetic component to SPD, and I can’t think of any relatives who have been or could be diagnosed with it. My parents are/were each extremely depressed and both likely have/had PTSD related to their childhoods. But I know that one of my grandparents and at least one of my uncles likely live with an undiagnosed ASD.

Anyway. Those are my thoughts on that. Still struggling in a major way with the notion of self-diagnosis, especially given how mistrustful I have always been “trained” to be concerning my own health. Too afraid to discuss this with those close to me as I’m afraid of being labeled “overdramatic” or “attention-seeking,” the latter being the absolute last thing I want. I’m not totally sure where to go from here.

Sensory overload: not just me being “melodramatic”

A quick note here: I don’t intend for this blog to focus solely on Autism, nor do I intend it to become a diary of my daily life. I’m hoping to find a home for some of my creative writing here. For now, though, it feels empowering to list out my experiences with what I now know to be Autism. It is helping me connect with the online autistic community, and I already feel calmer and like my thoughts are better organized just having a place to talk (even to myself!) about what I am learning about my past and present self. So much of my life makes so much more sense as I settle in to an awareness of my neurodivergence.

Throughout my life, I have experienced what has become a predictable array of sensitivities or aversions to certain sensory experiences. Because I was raised and socialized to believe that these specific “quirks” were just me being difficult or dramatic, I am working on unlearning that and coming to accept that there are sensations I find bothersome to the point that my focus is pulled away from whatever I’m working on until I can resolve the issue.

Scent-wise, I have been told I have “a paper nose”–that is, I can smell everything. I don’t have many sensitivities in this area, but notably, the same comment has been made about one of my brothers-in-law, who has a diagnosis of ADHD. He and I have some similarities but have extremely different personalities, which I think leads to a lot of mutual masking.

I absolutely hate the taste of onions and always have. The only onion-related taste I can tolerate is onion powder. I find them overpowering, whether raw or cooked, and totally intolerable. This has been a major source of scolding and teasing in my life: I used to get in trouble as a child for not eating a dish that contained onions. Even this last weekend with family, we picked up two pizzas for takeout. Both had onions. My family knows well my aversion to onions; the dietary restrictions of others in the group (we have some vegetarians) are always respected. It feels like a petty complaint even as I write this. But this weekend, I decided to honor this aversion and simply not eat the pizza. Not “just pick the onions out.” No thanks, I’ll just find something else to eat. Even now, it makes me feel high-maintenance. But I am not a picky eater in the slightest; the only other food I cannot eat is avocado, due to a gastric allergy. I am game to at least try most anything, and the only request I make when deciding what to eat with a group is that there be at least one dish without onion and avocado. That doesn’t seem unreasonable, but the amount of grumbling it elicits (mostly from family–friends don’t really care) never ceases to make me feel like a burden. I also have a weird knack for knowing if a food is going to give me a stomach ache as I am eating it. I don’t know if that’s a function of intuition or just because I know my body very well.

I talked a little bit in my last post about my affection for silky fabrics. I also experience the typical autistic desire for bodily pressure–a weighted blanket I got as a gift last year has calmed many an anxiety attack and made for very restful naps. I love hugs, and The Time of Corona has been difficult as a result. I and my siblings were not often touched from a place of affection as children, and I have grown into a touch-starved adult. Clearly, much of this issue overlaps with my (diagnosed) PTSD. Right now, I miss tight hugs and seek them whenever it is safe to do so. Another touch/feeling related issue I have is having “stuff” on my hands–I love activities like gardening, but once I’m done, I have to wash my hands immediately. Whenever I’m working with something that sticks to my hands, my need to wash them becomes paramount in my mind, to the point that it becomes the only thing I can focus on: I cannot do anything else until I have washed my hands.

My aural sensitivities are primarily related to my PTSD: the sound of a door slamming or a man yelling (unless he is simply trying to be heard in a loud place) takes me through fear-anger-anxiety in the span of a few seconds. I can’t stand to be in crowds, because my auditory processing is hinky: if I’m not staring directly at the speaker’s lips in a place with a lot of ambient noise, I will hear them but not understand what they are saying. I also have a terrible phobia of not being able to breathe, and moving through a crowd makes me feel breathless. It’s also why I never aim my car vents toward my face in the wintertime–hot air blowing at me feels too much like suffocating.

Visually, I’m not particularly sensitive. I don’t like to watch videos of people being hurt. I am strongly drawn to images of rainbows or those with a full spectrum of color and can stare at them for extended periods of time, hyperfocused and nearly hypnotized, sometimes drawing them very close to my face. As far as internal processes go, there’s a touch of synesthesia and has been since before I knew the word: months have a color, numbers have a binary gender, and many words conjure images that have nothing to do with the word itself. I love repetitive tasks and things that others often find unspeakably boring: data entry is a favorite, as I can let my mind wander. At the same time, I love manual labor and being able to get my hands in something and see physical results in real time.

Overall, I don’t share much of this information even with those close to me. I’ve never been much of a talker, always more of an observer. But they are sensitivities that have carried through my whole life, which is another way I know that they are not connected to trauma or anxiety. But this blog feels like a safe area to explore these things, and the way I process new information and experiences, especially personal ones, is to name it and analyze it extensively, as I’ve done in the last few posts.

Self-regulation, hyperlexia, hyperempathy, and my inability to pick up on cues

Social Cues and Ways I Suck at Reading Them: An Example
My own inability to pick up on social cues is at the fore of my mind this morning. I had plans to visit family in another part of the state this weekend, but my car is [perpetually] on the fritz and I don’t trust it to make the trip anymore. I had been thinking about how best to let down the family I was supposed to see when my sibling–we live in the same city and were both taking the trip this weekend–texted me this morning, asking when I planned to leave on the trip. I was honest and told them I’d been thinking I might not be able to go, thanks to my car. My sibling expressed that it was a shame that they couldn’t carpool with me, due to their now having a puppy to bring in the car (SUV) along with their toddler. I felt frustrated by this, as this sibling has previously expressed regret at not being able to carpool with me due to the toddler (despite there being two empty seats in their car). Naturally, I’m not entitled to a ride anywhere by anyone, and I know that. It has just made me feel like somewhat of a burden, which is humiliating. Their previous reasoning when I’d ask was “well, if we have to, we’ll make it work,” which would always lead me to withdrawing my request as I didn’t want to put anyone out. I didn’t express any of this to my sibling, as I prefer to keep the peace and I felt I was probably overreacting (sound familiar)? It just felt like such an odd interaction:


A: “It’s a shame we can’t help you out!”
B: “Actually, here’s a simple way you could, and I’d be grateful.”
A: “…yeah, shame we can’t help!”

Anyway, since the conversation this morning, they have re-thought and offered me a lift. Of course, now I’m consumed by guilt, feeling self-conscious and wondering if I said or did something to manipulate them into changing their mind. I can’t help but wonder if this sibling has set up boundaries with me (which I would understand) and just never told me, so I should have picked up on some cue that they simply did not want to offer me a lift. I don’t know. It will be a source of anxiety for me until at least tomorrow afternoon.

Hyperempathy
I didn’t have a word for the intense feelings I felt when met with a devastating personal story from anybody from a close friend or complete stranger. At least, not until earlier this year, when I learned about a common autistic tendency known as hyperempathy. WordPress is telling me that this is not a word, but they also draw a squiggly red line under their own name, so I’m rolling with it.

I have often broke into tears after watching a sad video or hearing a sad (true) story in private. When around others, I am so used to masking this behavior that I often come across cold or unfeeling. I am used to the “performance” of masking, so when I am with others, I quickly run through these intense feelings of solidarity and only speak aloud when I have either a solution to offer or an expression of frustration at the situation. I’m (usually unsuccessfully) trying to mimic what I, in my panicked state, view as an acceptable reaction. I’m extremely close with my siblings and we spend a great deal of time together, so they have felt comfortable chiding me in the past when my outward reaction to an event is inappropriate. I am not good at recognizing this on my own. Especially because deep down I feel a strong sense of empathy for anyone going through a difficult time–my problem is that I am legendarily bad at expressing that, and instead move to an outward emotion that is less vulnerable. I know that in the past my siblings and some close friends have even described me as “mean,” and it frustrates me that I apparently don’t have the skills to come out with what I really feel. This is definitely connected to trauma: the expression of emotion in my adolescent household was discouraged, sometimes violently. My siblings, though, seem to have grown out of that and empathize openly. I’m either unwilling or unable (or both) to do the same. It is a source of shame, another thing I struggle to express to seek help with.

I cry reading the news, especially following a police shooting. I don’t share this with anyone, because a white woman crying over a Black life feels performative when done “in public.” I don’t tell anyone the way these events affect me, principally because I’m not the one who should be centered–but I wish that there was a way to express the deep sense of mourning I feel every time someone is stolen away by the state or other actors. I think always of their mothers.

Hyperlexia
I have been an extremely avid reader since I first learned how to do it. I read early–my father credits my schoolteacher mother’s commitment to literacy and regular practice of reading to me extensively before I was even verbal. And I love reading–it is not a compulsive behavior that I feel I need to, but cannot, stop, as often happens with some of my other self-regulating behaviors. This is, I have lately learned, often common in women with autism especially.

Following the death of my mother, my reading habits changed. I was reading, on average, maybe ten books per year after her passing. I’d lost the joy I’d felt for a lot of things.

Earlier this year, I was under-employed (cut from full-time hours to less than half that) for a period of about four months. In that time, I averaged ten full-length books–fiction and nonfiction–per month. I would spend entire days reading. I noticed an improvement in both my vocabulary and my mental sharpness, despite having an extra 24 hours per week to fill. I rediscovered my love for reading and haven’t looked back.

And my interests in this regard are diverse. I love well-written thrillers (think Gillian Flynn, Paula Hawkins, some Stephen King), magical realism, memoir, cultural history, coming-of-age stories, you name it. I’m sometimes “in the middle of” more than one book at a time.

Self-Regulation
I engage in a lot of behaviors I did not have the words for until one of my siblings became a special education teacher. I sway from side to side if I feel uncomfortable while in a standing position. I rub the space between the second and third knuckle on my left ring finger when I need to calm myself down. Silky textures have always hypnotized me: as a young child I had a scrap of satin cut off of a Halloween costume that I would “worry” between my thumb and pointer finger in order to settle down enough to fall asleep. I still do this compulsively when I get my hands on such silky fabric. All of this has been noticed and pointed out by people close to me.

I sometimes catch myself pulling on my earlobes when in an uncomfortable social situation. I know that these behaviors are known as “stimming” in the autism community; when conscious of doing them I often feel “grounded,” like the behavior and its repetition is what is keeping me calm and in the moment.

Anyway, I feel I’ve rambled on for quite a while. These are just some things I am learning and thinking more about as I try to become more comfortable with the idea of self-diagnosis.

Autism

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.