I’ve been diagnosed with Autism. As part of the assessment, they asked me to write a narrative about what it’s like to be me. This is what I wrote… it’s very long. But setting it all down really gave me perspective on my brain and its oddities.
Sorry in advance for the discombobulated nature of this narrative. Though, you essentially gave permission for that. So, here we go.
I had three older siblings. Much older. 17, 10, and 6 years older, respectively. And I was always being told to be quiet, stop talking, shut up, you’re talking too much. Which is so hard for me to wrap my head around because now, as an adult, I’ll stand in “conversation” with someone and all that’s happening in my head is some version of “OK think of what to say, what’s next, what are you going to say…” There is this emptiness unless I’m speaking with someone I know who I’m comfortable with and then I can talk with them or I can be silent with them and it’s OK and I’m OK but in the other situation I’m NOT OK.
Thunder, storms, fireworks, all have always been so scary to me… they are still very intense. I remember several July 4ths in a row where my dad would ask me if I was actually going to watch the fireworks this year. We could buy big, intense fireworks because we lived in Montana and we lived rurally so he would go get these huge booming fireworks and set them off in our yard and every year I would say yes please buy them, I won’t be scared this time! But then as soon as the booming started, I would run inside and down the stairs and under my bed and hide until they were all over because it was so overwhelming and terrifying. My parents and siblings would try to coax me out but there was nothing that could entice me to subject myself to that awful sound. It wasn’t until I was in my late 20s and someone suggested I wear earplugs that I enjoyed watching fireworks. Completely changed the experience. Delightful. Thunder, too, thunder is so terrifying. I have done/still do a ton of camping and worked in the outdoors as a guide where it was my job to make sure everyone’s OK and safe but I would just tell my co-leader, “I can’t make rational decisions when it comes to thunderstorms, so I am just handing all judgment calls about that to you.” It’s scary to imagine getting hit by lightning, yes, but the actual fear response is generated after a lightning strike, in the waiting time as I’m preparing my body to be utterly consumed with the sound of thunder. When I tell people I’m afraid of thunder sometimes they ask if it’s actually the lightning that I’m afraid of because that makes more rational sense but no, it’s not, it’s the enormous sound that I can’t escape.
I’ve realized, too, that there’s a word for the thing that happens when I hear a loud sound, it doesn’t ALWAYS happen but often, I know now that it’s Synesthesia. With loud, unexpected sounds I see light and colors, bright flashes, it makes the sound feel so intense, and there is this sensation of being squashed flat by an anvil or something. And, more synesthesia, the other day at the beach I was trying to play with the sand but I couldn’t touch it because I could feel it between my teeth. It wasn’t actually in my mouth but the feeling of it in my hands and the sound it made, led me to experience it as if it was in my mouth and gritting between my teeth. Utterly intolerable. And now I know that’s why I can’t watch my children spin around or go on the merry-go-round or go on swings because when I see them doing that I get so dizzy and nauseated, like it’s my own body experiencing the motion even if I’m completely still. There are other experiences like that, that I think I don’t even know about yet, that I’ve always just experienced without knowing it has a name and is known to create distress.
I put my face into Sarah’s birthday cake. I thought it happened in first or second grade but when I asked my childhood best friend about it she told me she thought it happened in fourth or fifth grade. It was very loud and chaotic in the room - lots of girls, I think every girl in our class had been invited. In a small dining room, and we were getting ready for the cake to be cut, I don’t think there were candles in it at the time or anything. But I remember feeling very “hyper” and a bit out of control, and I had this idea that it would be very, very funny and fun (for everyone!) if I put my face in the cake, and immediately upon having the thought I did it. I don’t remember what happened afterward, though I do remember feeling ever thereafter that Sarah’s mom really, really disliked me.
I learned how to read one day when I was three or four. I asked my mom to tell me what sound all the letters of the alphabet made (I already knew them all as discrete concepts, not just as a flow of sounds). She told me the phonics of them all and then I read a book. She didn’t really believe I was reading so she had me read another. I just knew how to sound words out from then on. Words and letters and sounds, all of that has always made total sense to me. I was an excellent speller and did really well in spelling bees, but then of course there are the words that make no sense visually/sound wise and I could never really actually study for the Bee because it was way too big of a demand so I only ever made it to the County Bees (I got 3rd and then 2nd place).
Speaking of spelling, on the playground when I was really young, I would go around spelling encyclopedia, e-n-c-y-c-l-o-p-e-d-i-a, extremely quickly, and I just adored how it felt in my mouth to say those letters in a row, and people were so impressed by my spelling abilities, and they would ask me to spell other words, and it would turn into this thing where people were giving me this positive attention and it felt really good. And it wasn’t just other children, adults would do the same thing, act so impressed that I could spell encyclopedia, and sometimes ask me to spell other words. There was a chunk of time when a lot of the relating I did with other people looked like this… in early elementary school I think.
One of my happiest, calmest, loveliest memories was from a Christmas season in maybe 2nd or 3rd grade. There was a space between the Christmas tree and the wall where I could sit, bathed in the Christmas lights. I would sit there for hours, reading the dictionary. I felt removed from my family and safe and snug and the lights were so beautiful and calming and reading the dictionary was delicious and I would write down words that I especially liked in my notebook.
I’ve always felt so happy by myself, and I would get lonely but I also sought a lot of solitude, which was easy because I was the youngest and my siblings were so spread out. My brother was never really around, because he was always bowhunting or fishing, and my two sisters were so much older that they really weren’t in the house for a lot of my childhood. So most of my childhood memories are of being alone in my room or in the woods by my house, and that was, for the most part, really comfortable and easy for me. I read and read and read and read and read everything. Books, cereal boxes, magazines, mail, everything. I’m not capable of NOT reading if there is text in front of me. Once, when I was traveling through New Zealand with my then-boyfriend, we came into a new town and I was reading every single sign we passed, and he said, “OK, give me your glasses, I can’t stand you reading everything to me.” We had talked about it before and he was like, can’t you just not read it? But, no, I can’t, and I don’t really understand how other people can shut off that processing part of their brain, and I actually don’t really believe that they can because even trying to imagine that is so foreign to me - to see words but not read them? It doesn’t make any sense.
When I was young, my Mom took me to get my hearing checked, and also to be assessed for ADHD, because, as she said, “When I ask her to do things, she just won’t do them!” I heard her say this to the evaluators. I knew that I didn’t do what she asked me to do, and I knew why, and I knew it wasn’t because I couldn’t hear her - I just didn’t want to do the things. So, I didn’t. But it didn’t seem like I should tell her that. So, I didn’t. Because I think that you are supposed to do the things that people ask you to do, even when you don’t want to.
Sometimes, when my mom would be upset with me for not doing what she asked, or if we were in conflict, I would feel this extreme, uncomfortable pressure inside my body, sort of around my root chakra, such that I would press on my vulva to try and make it go away, in the way that a little kid presses there when they have to pee and are trying to hold it. It felt connected to the dilemma I was in - that I really, really, really, really didn’t want to do what was being asked but that I also really, really, really, really didn’t want my mother to be upset with me. So, part of me actually did want to do what she was asking, but I couldn’t, because I didn’t want to. Which sort of just led me to believe, for most of my life, that I’m rotten on the inside and that I am a Bad Person who is Lazy and Unmotivated and Undisciplined. Sometimes I still believe these things.
I continue to struggle mightily to do things that I Don’t Want To Do. And, sometimes, I’ll be doing something that I want to do, but then a switch will flip. Like, I’ll be like, “Oh, I’m going to be kind and make a coffee for my husband this morning.” And he will see me in the midst of making coffee (we have an espresso machine, so just one coffee at a time can be made) and he will say, “Can you make me a coffee?” and then, even though I was literally just doing that very thing, I cannot. I cannot make him a coffee. Or, if I do, it’s only with a physical sensation of dread/loathing/heaviness/twisting/UGH and it feels like self-betrayal.
This is one of the weirdest things I’ve ever done and I have no idea if it has anything to do with the fact that I am neurodivergent or what but I’m compelled to tell you. I was in Barrow, Alaska, which is a place where people take cabs everywhere because it’s usually way too cold to walk. I was going home one night and I told the cab driver my house number. He took me to the wrong house, about a block away from my house (I may have told him incorrectly, or he misheard). I felt really panicked about this and couldn’t bring myself to tell him that it was the wrong house, so I got out of the cab and walked to the wrong house and went inside the front door. In this part of Alaska, every single house has a qanichaq, which is essentially a vestibule just inside the front door, where everyone puts their outerwear before entering their actual house. So, I stood in this qanichaq, in the dark, and I remember feeling these strangers’ coats, and I counted to 100 to give the cab driver time to depart, and then I left and ran the block to my house, feeling extremely strange and silly for having felt like I had no other choice than to invade someone else’s property because of a misunderstanding.
Before I had a computer in my pocket, my way of coping with unstructured time (periods of waiting, etc.) was to read or to write. I often had a book and always had a notebook with me and I would write and write, just endlessly recording the content of my mind, sometimes with great fidelity to the exact experience, sometimes using more figurative or poetic language. I have dozens of full notebooks from this period in my life, which was from about 6th grade through college, with another big time being while I was in Japan, where I was often expected to sit at a desk at school with no circumscribed tasks given to me.
I struggle to switch between tasks. One of the most common triggers of frustration for me as a wife and parent is when I am very clearly in the middle of a task and my husband or kids ask me to switch tasks. Which is ironic, because I ask my husband to switch tasks all the time. (I try not to do it to my kids too often.) But the thought of setting down whatever it is that I’m focused on before I’m finished is painful and dysregulating to me.
I can’t work a forty-hour work week. Currently I work 2.5 days a week as a therapist, and spend 2.5 days a week parenting my kids while my husband works, and then we spend weekends as a family. It’s really hard, because between parenting and working, it feels like I don’t have any time to simply be, and my executive functioning really fluctuates. My house is really, really, really messy most of the time. A woman comes and cleans for us once a week and the house is always so messy by the time it’s time for her to come back. People talk about their messy houses but I don’t think they understand what a messy house is - stuff on every surface, every floor covered in things that don’t even belong in the room, etc. I just struggle with the housekeeping stuff, so much. My husband does 100% of the laundry because I just cannot - I struggled to keep up with my own laundry when I lived alone but mine plus his and the kids… feels completely impossible.
I was a “picky” eater as a child. My parents were very unhappy about this and my father (who was a doctor before losing his license due to refusing to finish treatment for alcoholism) would tell me all the time that I was going to grow up to be stupid because I wasn’t eating enough protein. I hid a lot of food under the dinner table. Food is still hard. I eat a lot more things now than I did as a kid but at least every other day or so I put something into my mouth and get the urge to spit it out before swallowing it. Sometimes I do spit it out.
There is always something that I am deeply interested in. As a child, I was obsessed with horses, and wanted nothing else in the world. I cried every Christmas when I didn’t get a horse. We had property, and my oldest sister had had horses, and so I really expected that eventually, someday, my parents would get me one. They never did. Other special interests have included: mushrooms, botany, medicinal plants, sourdough bread, human psychology, eating disorders (though I never had one, I spent years lurking on “Pro-eating disorder” chat boards and learning everything I could about the psychology of eating disorders), specific video games, card games, etc. People are often surprised by how much I know about one thing or another. I just become obsessed with some things and it’s hard for me to want to spend energy or focus on anything else until I feel like I’ve learned everything I can possibly learn/exhausted my interest in a subject.
The week before I started high school, I was hanging out with a friend who knew older kids. We ended up sneaking out of her house and spending time with some of these older kids, one of whom was going to be a junior in high school. He was nice enough, but objectively unattractive (to me). It was a summer night in Montana, which can approach chilly, and at one point I was shivering in my shorts and tank top. He offered me his vest to wear and I gratefully accepted it. He then started holding my hand, which I did not want, but did not know how to extricate myself from. I remember thinking, “Well, he gave you his vest, so maybe you need to let him hold your hand.” At some point, we were left alone and he kissed me. I just sort of froze - I didn’t kiss back, but I also didn’t pull away. Then he asked if I wanted to be his girlfriend. I don’t remember my response, but I do know that I then found myself in the situation of being “his girlfriend”. This meant that we talked on the phone for some time each day, which I remember finding tedious and uninteresting, and he would try to hold my hand at school, so I took to avoiding him as much as possible. Someone on my cross-country team asked me to tell her about how we had started dating and I basically told her something along the lines of, “Well, it was cold and he let me wear his vest and then I guess I just fell for him.” She latched onto those words, fell for him and was like, “Oh my Gosh, those are big words, you fell in love with him! You are in love?!” I just sort of shrugged and felt embarrassed and confused because NO, I was not in love with him, and did not want to be dating him, and felt so confused and horrified that I had landed myself in this awkward situation. Eventually, after a few weeks, I screwed up the courage and sense to call him and tell him I didn’t want to be his girlfriend anymore. He was shocked.
My parents refused to let me get my driver’s license as a teenager because they didn’t trust me. Initially, they didn’t trust me because I had melted down and blown up at a teacher who I felt had treated me unfairly. Then, they caught me smoking weed, and they didn’t like the person I was dating, so after that there seemed to me to be no way for me to possibly earn their trust back (other than perhaps breaking up with the boyfriend and quitting smoking weed, which were two things I was unwilling to do.) By the summer before my junior year of high school, they had decided that if I would be in charge of mowing the lawn for the summer, I could get my driver’s license. I refused to mow the lawn. Our house was on 4 acres of green grass, and we had a push mower that was gas-powered. The experience of mowing the lawn was very overwhelming to me from multiple angles. It was very loud, the vibration of the mower in my hands was very uncomfortable, and the sheer vastness of the lawn was overwhelming. It was at least a ten hour job to get it all done. Sometimes I would go mow for an hour or so here and there - if I smoked weed and wore headphones with music playing, I could tolerate the experience for bits of time. But for the most part I simply refused, which turned into a power struggle, which doubled down my refusal. I wanted my license, which in my mind equated to my freedom, SO badly - we lived out of town and I was always having to ask people for rides. It was challenging. I wanted to want to mow the lawn… I wanted to be able to do this “simple thing” that would “prove” that I’m responsible and trustworthy… I couldn’t do it. I wouldn’t do it. I didn’t get my license until I was 18 (when my parents had no say over the process anymore).
I discovered weed when I was fifteen. My boyfriend, who I dated throughout most of high school, smoked with his friends. He eventually introduced me to it. Once I became somewhat familiar with the smell, I realized it was actually familiar from my childhood, and I then remembered that I had found baggies of “weird leaves” under my dad’s bed. I began stealing tiny bits of weed from him for my personal consumption. By my junior year of high school, I was smoking every day, multiple times a day. It was utterly delightful to me, and I mostly smoked while I was alone, although most of my friendships revolved around weed as well. There is so much about cannabis that is calming and resourcing to me, though overall I am aware that it is not helpful - it cliffs out my dopamine way too much to the point where if I used it with any kind of regularity I end up feeling as if I am stuck in a deep, dark hole of misery. I have had this realization what feels like hundreds of times. It has only been in the past 5 years (since parenthood) that I have maintained what I feel is a healthy relationship with cannabis. I use it to augment occasional experiences (being in nature, going to concerts or the movies, etc.) and do not find it difficult to maintain boundaries around those experiences such that I often go weeks or months without using it. I do, occasionally, use it more than one day in a row (generally on camping trips) at which point I do end up experiencing some version of the deep, dark hole, but I now recognize it for what it is and have less trouble extricating myself from the dopamine pit.
One of the draws of weed for me was my “party” experience. I partied some in high school and college, but not every weekend by any means. When I did find myself at a party, I knew that if I could find the “stoner room”, I’d be comfortable and safe. The stoner room offered: my substance of choice (alcohol has never had much draw for me), way fewer people in one place, dim lights, quieter music, an excuse to sit in a chair and zone out and not interact with people at all because I was just “so stoned”. Parties were a sensory nightmare. The stoner room was sensory delight.
I have never considered myself to be someone who takes things literally. I can be highly sarcastic, and speak in such deadpan that people often don’t know that I’m joking, and I have to explain to them that I was saying something I didn’t mean, but in a way that sounded like I really, really meant it, and that that was why it was funny…
I also have always excelled at “creative writing”, effortlessly weaving metaphor and simile into my written words, and I never struggled with the simile/metaphor concept in school or in standardized testing. Thus, I’ve been very surprised recently when my husband has been noting that I am “taking things he is saying very literally”. I’m struggling to come up with an example right now, but, I do know that at times when he starts talking about plans he has for our house or our yard I will feel increasingly anxious until I understand that he is just dreaming and has no timeframe in mind for these plans. I am there thinking he is going to go buy $10,000 worth of lumber tomorrow and start building a sauna in the backyard when he is speaking more theoretically/indeterminately in the future. There are other times where it is more of a direct “literal translation” that I am responding to (usually with anxiety) and that when we break down what he actually is trying to communicate and what I am understanding, we are left again noting that I took his words very much at face value, when he meant them more broadly.
This is a hard thing to put into words but often when I am in a group of people and there is some sort of “situation”, I feel like I have very clear insight around the situation and its possible outcomes, and how to rectify or avoid or steer those outcomes. When I try to explain this understanding to people, it is often almost impossible to convey what I understand and therefore I just watch the scenario play out as I expected and later people are like OH NOW I SEE! I just tend to almost always be correct. About most things. Such that it is a running joke with my close friends and husband that it can be painful to be in close relationship with me because I’m always right. And it can be so frustrating to have such clear understanding but to completely lack the tools for communicating that understanding to people such that they will take action to rectify the situation. Something that goes along with this is that when people try to explain something to me that I already understand very clearly, I want to jump out of my skin. It often triggers anger/frustration in me as it feels like a waste of everyone’s time and also there’s an element of feeling like they must think I’m stupid if they think I don’t know/understand what they are trying to explain.
I believe that I am hyper empathetic. I often struggle to disentangle myself from the emotional experiences of others, though I have grown in my ability to do this with clients as I have somehow been able to convince my nervous system that it is my job to a) use my body’s understanding of my client’s emotional experience to support their regulation and sense of being known and understood and then to b) release that emotional experience to the earth to allow for it to leave my body and be held by a force much greater and expansive than my own body. This has always shown up for me while watching movies - I find it almost impossible to not feel overwhelmed by the main character’s emotional experience. I cannot watch horror movies, as I still have recurring nightmares (and waking experiences of extreme fear) in which I remember aspects of the movies that terrified me.
The scenario in which I have felt the most ease, competence, and ability to function has been while working as a field guide in Wilderness Therapy. This involved spending anywhere from eight days to three weeks out in the wilderness with a small group of humans (generally anywhere from 5 - 12 people). I had to keep track of only the gear I had with me, which, while it was a fair amount of stuff (as a guide I was of course responsible for the group’s gear, first aid kids, student meds, etc.) was immensely less than what is needed to keep track of in the “real world”. I developed systems for everything, laying out my tarp in just such a way every single time I set it up for the day, and usually wherever I was working had fairly well-established systems built into keeping track of systems and physical items. There was a very familiar rhythm to each day and week. While there were a lot of transitions (packing up and moving almost every day), the routines embedded into the schedule were very supportive for me in moving through and supporting students through those transitions. The small, familiar group of people allowed me to develop deep, connected relationships. The established “hierarchy” and social rules in place were extremely comforting and supportive in my ability to process, communicate, connect, and act within the community setting. Transitioning into and out of the field was incredibly stressful, every time, and I tended to feel a lot of anxiety especially around going into the field. I would imagine all of the difficult scenarios that might happen (the students I worked with could be extremely challenging, behaviorally), but once I arrived in the field and had made it through about the first half of the first day, I could feel my nervous system relaxinvg and regulating in ways that are very difficult for me to access outside of that setting. I recall a co-instructor once marveling to someone else, “Clea is the happiest person I have ever known in the field,” which was utterly shocking to hear, as I had never had anyone describe me as particularly happy before. Upon reflecting, though, I totally understand where the comment came from - there are very few places in my life where I feel as free, grounded, and functional as I do in the wilderness.
Each year, my husband and I bring our two kids to Montana (from Oregon, where we live) in June. We make a four-day trip of it and we camp on national forest land (NOT in campgrounds) along the way. I was recently struck by the thought that it is one of the most relaxing four-day stretches of every single year for me. I am spending time with my safest, most familiar people. We are either in the car, or out in the wilderness. We camp at other times of the year, and while it is mostly a positive experience for me, I do find it stressful to be at campgrounds with my children. They are fiercely independent, and sometimes struggle to respect boundaries, so I feel like at campgrounds I am often on edge. It is totally different in the wilderness, where I am happy to let them run around freely in the woods while my husband and I engage in camp craft, building a tending fires, making shelters, soaking in all of the trees and flowers and creatures around us. It is truly a delight and such a notable experience of ease, which I seldom feel in my daily life.
There is, obviously, so much more to the experience of being myself, but here you are, here is this, what I was able to put down in words in the past several weeks whenever I had a bit of space between clients and parenting. Thank you for reading and trying to make sense of this collection of memories, experiences, and thoughts.
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