The Hardest Things About ASD

The constant sensation of having so many things you need to say and then feeling like you’re put on mute whenever you have the opportunity to say them. The constant dissatisfaction from saying the wrong things when you finally remember how to speak.

The electricity that runs under your skin as the world naturally shifts; seasons changing feel like earthquakes, the sounds of people, of socialization and technology scrape your brain, the sun, even behind clouds, exhausts you. These sensations all convalesce until you don’t know what they are and you shut down, melt down, or explode.

Knowing that you care so much that it makes people uncomfortable, but not about the right things.

Wanting to really love and accept yourself, and constantly being on the verge of doing so, but always tripping over the fact that you don’t know how to navigate this world that wasn’t built for you. That even if you accept who you are, nobody else does. That even the people who tell you to have more confidence unconsciously criticize everything you do.

Learning that the only way to survive is to cope and hope that anybody understands why everything seems so difficult for you. Living in mediocrity because you’ve learned to accept always being in pain. Loving physical injury and illness because it gives you a way to explain yourself.

Masking until people accept you and then slowly disappointing them as you realize you can’t keep it up.

Being embarrassed of your voice, your face, your posture, your feelings, everything because you don’t know exactly what you’re supposed to embarrassed about. Feeling a million overwhelming things but looking like you don’t feel anything. Not knowing how to use the right tone of voice, the proper inflection, or the correct volume when speaking, like you’re singing for the first time.

Spending entire days in immense loneliness and still becoming viscerally uncomfortable when somebody speaks to you. Missing someone with all your heart but never wanting to see them.

Making things harder for yourself because your methods of coping are the same things that make you physically unhealthy.

Obsessions so great they hurt and you don’t know why. Wearing yourself to the ground with them because you don’t know how to deal with the feelings they create in you, so you immerse yourself in them mercilessly until it makes you sick to even think about them. Trying to slowly detach yourself from them but spending your whole life unable to let go of that bittersweet feeling. Feeling this way about objects and ideas but not about relationships.

A great disconnection from the categorizations asserted by society. Not understanding gender, sexuality, class, intelligence, wealth, or family like other people seem to. Trying to make sense of yourself with these categorizations that will probably never fit you properly.

*A note that despite all this, I’m happy to be myself. I don’t support a “cure” or genetic screening for autism. Autistic people make indisposable contributions to society.

When You’re Angry at Yourself for Being Hungry: Trauma & Executive Dysfunction

TW/CW: mentions of eating disorders, drug use, suicide, sexual abuse.

It’s 11:30 am. I am jolted awake by some unknown thing; perhaps a disturbingly lucid dream or the scuffle of an outside sound. I’ve been sleeping for 9 hours but my eyelids are so, so heavy. I already feel so useless for sleeping this late, so I force my eyes open, roll over, and pick up my phone. I have completed my first daunting task of the day and am already overwhelmed. I lay on my side scrolling through my newsfeed for 45 minutes, my arm falling asleep and my eyes watering, before I push myself out of bed. I take my medication and saunter to the living room and sit on the couch so I can resume my scrolling.

From the moment I wake up, everything comes flooding in. If I glue myself to my phone there is some small chance that I can hold off these overwhelming feelings that I don’t know the name of. So I sit still as long as possible, working up strength for each task. Like 5 articles. Comment on 2 memes. I can feed the fish. Read 3 chapters of manga. I can water the plants. Complete 2 daily tasks in my favourite game. I can entertain the thought of feeding myself. Maybe in another hour. I’ll do some more mindless scrolling. I’ll read more updated chapters. Maybe there is something interesting I haven’t read before.

Besides the constant lack of energy, the feeling of hardly being able to complete a single simple task, I am faced with the guilt and the transience of eating. All of my money, something I have very little of, goes toward this thing I must do in order to sustain myself, this tedious thing I have to do over and over again. So often the fridge is functionally empty. I buy produce and it goes bad. I eat the same meals over and over and over again because I know I will enjoy them. No textural nausea. No unexpected stomach upset. No forcing myself to handle the unsettling sweetness of vegetables I don’t like. Once I have eaten everything I like, I run out of money for food, and I am left with 2 or 3 meals a day of junk food, of food my stomach can’t handle, of things with very little substance, because these are the things that come in bulk, come frozen, and are palatable at some point in time. If I somehow muster up the energy to make some semblance of a meal, it so often makes my stomach ache. Even knowing this, I still must eat again. I must eat with the guilt of knowing I will have to spend this money again to buy the same thing next time if I eat it now. Something might go wrong. I might drop the food on the floor or burn it or myself as I have done so often. Even on top of all of these factors are the memories of disordered eating that still nag in the back of my mind. “Maybe it’s good that you can’t feed yourself.”

Fitting this juggling act between part-time shifts and therapy sessions and every other errand and chore becomes nearly impossible. The very thing that is supposed to sustain me instead mocks me constantly, contributes to my low mood, and results in depleted iron, and the cycle worsens.

I think it’s very confusing to people who look at me, even those close to me, that things could be so difficult for me. I have no obvious disabilities. My childhood wasn’t perfect, but it certainly wasn’t traumatic. I am conventionally attractive. I have a loyal partner who is always taking care of me. I am relatively close with my family. I have a few special talents and above average intelligence. And somehow, despite all these things, I am simply unable to do things with the ease that other people do. I spend most of my time anxious and unsettled. Things that look simple on paper are overwhelmingly difficult for me. More than mental illness or neurodiversity, these things are largely the result of a culmination of small traumas and something we call executive dysfunction.

How can I say in the same paragraph that I haven’t experienced trauma but that my reactions and behaviours are a result of it? Perhaps it’s my overexposure to all things psychological. I am very familiar with trauma. At age 16 I was very certain that I had Borderline Personality Disorder, something that is largely believed to be caused by trauma – it’s often linked with PTSD. These traumas are quite similar between patients – usually abuse in all forms. Although my symptoms did match BPD, my experiences did not. I spent so long wondering how my childhood could have affected me like it did survivors of CSA (to the extent one of my psychologists was concerned that was the cause) and I constantly racked my brain for an explanation. I used the research I gathered, along with all of the explanations offered to me by doctors looking for an answer to piece together a traumatic picture of my childhood that I was never fully convinced of. What I didn’t realize was that the trauma I developed was not the result of some major external traumatic experience, but more accurately the result of me being me (or at least the world’s reaction to it).

Perhaps I need to describe the picture I came up with, these “traumas” I thought I must have gone through to end up like this. I decided that since I was never abused, even emotionally, maybe I was neglected. After all, I remember spending most of my childhood alone. My most vivid memories are of hopping on stones in the garden or wandering farther than I was supposed to or taking my hamster to the park. I must have interacted with my family often but those memories never had any significance. I don’t remember anyone else talking to each other. I don’t remember affection. If those memories are so faint, maybe they were sparse. We only had film cameras when I was a child, so the photos aren’t as numerous as they would be for new parents now. There aren’t any videos. But I know now that this hypothesis is decidedly false. I had two older sisters. Even if they weren’t constantly doting on me at home, I was certainly never left alone. I was always fed. My mom made us stay at the dinner table if we wouldn’t finish our food, so I know that she cared about whether or not we ate. I loved my grandma more than anything and we were very close as well, even though she didn’t live in the same city. I really had no shortage of affection or attention, even if I’d like to believe I did.

My next guess was that my parents’ divorce traumatized me. I remember once staying in the basement with my sisters while my parents fought, waiting for it to be over. I didn’t know what it was about. One day it was suddenly as if my entire life was being uprooted – we had to give away our cats and I was at once transported to a new apartment without my dad. I remember having no idea, at any moment, what was happening. I don’t remember being happy or sad. Only that it was happening. One of the main features of Borderline Personality Disorder is a fear of abandonment. So of course, this much had to be obvious. I felt abandoned by my dad who had moved into a different apartment, and eventually to a different city. I obsessed over it to the point that it affected how I loved people. Only that didn’t really happen. I was never mad at him. He bought me a guinea pig to play with when I went to his apartment and I named him Pikachu. There were Polly Pockets. He had a girlfriend and I thought she was cool; she introduced me to punk music and shared my love of dogs. I got to travel back and forth between the towns to see him which meant sitting on a bus for a few hours listening to my favourite music and drawing or reading. Of course, as someone who is extremely alexithymic, it’s hard to say what I was really feeling at the time. There could have been many sinister things bubbling below the surface that I had no awareness of.

Certainly, there is no way that a divorce won’t traumatize a child at least a little bit. But every article and paper I read points out a few common elements of what affects children the most – age, high-conflict divorces, and instability in the new home. I was not in the target zone for any of these elements, and I also had a “control subject” – my sister, the middle child. According to Dr. Scott Carroll, a psychologist, the age a child is most impacted by divorce is at 11-years-old. I was 7 at the time, and my sister, who is 4 years older, would have been placed exactly at that age. There was not much conflict in the divorce whether financial or emotional, as far as I was aware, at least compared to other cases. My new home was stable enough. My mom worked a regular full-time job and was usually around. She had a boyfriend I didn’t like much at one point, but I got along well with his son. I was at a vulnerable age, certainly. But my sister, who should have also been affected in at least a similar way, seemed to adjust relatively quickly, got amazing grades all through her school years, and is now an immigration lawyer who recently bought in as a partner at her firm and has appeared in the Supreme Court. And despite my scrounging, I simply cannot find any studies linking divorce to the development of BPD. Some studies find that mental illness can be more prevalent in those whose parents divorced when they were children, but there’s no real definitive answer about to what extent. A huge number of children really just “get over it.”

So why did my common childhood experiences seem to destroy me? Why did I become impossible to control in school, eventually needing to move to a new one purely because of my behaviour even 6 years after the only “traumatic” event I can think of? Why did I start cutting myself at the age of 11, why did I go to high school and do every drug I could get my hands on, why did I obsessively plan my suicide in University? Why, at 28, have I never had a full-time job or made any leaps in the career that I love and have been fully supported in? Why do I dread getting up each and every morning, and why do I hate to eat?

Trauma is certainly the answer, but it wasn’t because of any major event or recurring tragedies. I began seeing doctors and therapists and various other professionals for my problems when I was 8, and I have continued seeing them for my whole life. When I first learned about BPD, I brought it up with my psychologist at the time. After several frustrating sessions with her, she left to work in a prison, and her final report of me contained the following diagnosis: drug-induced depression. Despite so many conversations with her, and my previous diagnosis of Generalized Anxiety Disorder and Depression when I was a clean and sober 13-year-old, she refused to so much as diagnose me with an inherent mental illness – it was only relevant that I was doing drugs at the time. When I became extremely suicidal and my mom and I decided I should go to emergency to get a stay in the youth ward, the psychiatrist said a similar thing after we waited overnight to see him: “We don’t have any empty beds right now, and even if we did, we wouldn’t take you because you smoke weed.” It took two more psychologists before I had one who would acknowledge the dreaded ‘B’ word, and only because I prodded. In our last session she said something like, “I think you know [your diagnosis], because we’ve talked about it several times.” She wasn’t able to write a report for me because she went somewhere else unexpectedly. The psychologist before her told me they didn’t like to stick people with a diagnosis that heavy. Despite all of that fighting for some ounce of recognition to no avail, since that time, I have been diagnosed with BPD multiple times – even when trying to seek other diagnoses. Even when, in my opinion, my symptoms don’t really fit anymore, and they can’t all be covered by that disorder only.

I do think I developed BPD from trauma, but that it isn’t and has never been the main cause of my behaviours or emotions. I also believe my diagnoses of GAD and MDD when I was 13 were correct. It’s possible that whoever concluded I was ADHD when I was 8 even though they later told me otherwise could have also been correct. My final diagnoses of anxiety, depression and BPD with avoidant and dependent traits (that I was only able to obtain after three separate incidents of losing my mind at the Access & Assessment clinic, being belittled by a psychiatric nurse, and walking into the psychiatrist’s office silent and shaking with a folded list of symptoms) could also be accurate. But I wasn’t born with any of those things. They didn’t come from nowhere, and they didn’t suddenly all appear from one major event. Rather than that, they started as a seed. This seed could have been watered and given light and nutrition had anyone noticed its existence, but instead it was disregarded, even as it grew, mistaken for something else and ignored. My brain was naturally a little different. Social interactions for me weren’t the same as they were for everyone else. I wanted love but I didn’t know how to express or receive it the same way others did – it was always too much or too little. I always made friends with fervor and then pushed them away when they wouldn’t play how I wanted or understand why I was upset, or they would stop playing with me when their parents said I was a bad influence, always getting in trouble, even though I was obsessed with them. I have a slip from first grade where I got in trouble for refusing to let anyone else talk to my best friend, getting up even during class and claiming I was her bodyguard. My interests were similarly intense – those days spent skipping in the garden are so vivid to me now not because I was neglected, but because I felt free: away from everyone else in the quiet yard reciting lines from Sailor Moon, or spending time singing to my hamster at the playground. These differences were largely disregarded. I was called “weird” constantly, even affectionately. My intense interests were regarded as talents – I was the best reader in the class, then the best artist, and was put in the extra “gifted” lesson. My social differences came across as class clown or troublemaker. Constantly my teachers remarked that I didn’t apply myself and that I was never doing what the other girls were doing.

It wasn’t long before these things began to snowball in my mind. I didn’t know who was my friend. People seemed to hate me and like me at the same time. I couldn’t figure out other people’s intentions or feelings. I would copy what others did to an alarming extent and then get chastised for it. Confused, I would shift my behaviour to a different extreme. I did this over and over, loudly, despite being an introvert, somehow overconfident and hesitant at the same time, trying to figure out which version of “myself” people would actually tolerate. The only people I ever grew close with were equally bizarre and we always had to be separated because we would cause so much trouble together. At the same time, I noticed everyone’s expectations of me. If my drawings weren’t good enough I would draw and draw until they were best. I remember my sister and I competing to see who could draw a lion better, and then asking our mom what she thought. She said my sister’s was better, so I never stopped drawing. If someone said I was good at reading I would voraciously consume books. I even went to french oral speaking competition, something that seems impossibly nightmarish to me now. It was as if I waited for people’s interpretations of me and then used them to craft myself so I could please them. When it was an interpretation I didn’t like, I would do the opposite, even if they were right. This culmination of things compounded until they resulted in a massive onset of social anxiety.

When I had to switch schools for my behaviour, my entire life was uprooted. I was suddenly in a classroom of hormonal adolescents who I had never met before, and the social structure was entirely unknown to me. I had no idea how to act. The girls instantly befriended me, and then told me when I was hanging out with the “wrong” girls. I was over the moon when they’d invite me to things, only to realize they were talking behind my back. I said the wrong things and they thought I was creepy. The boys made fun of me for being vegan. I ate in the washroom and went home crying. I wanted to please people wherever possible and continued to appease those same girls. When we finally reached high school I joined improv, because I had always liked it in my old school. I slowly started realizing that whatever sense of myself I had built up before was completely crumbling away. I didn’t know how to fake extroversion anymore. I was too old to make weird sounds and do strange dances (something I know now was stimming). I was uncomfortable around everyone. I had to quit improv. In grade 10 my friends started to drink and do drugs. I absolutely hated it at first, but once again, I needed something to base my sense of self on, and I couldn’t do that if I wasn’t with my friends. And of course, I couldn’t be interested in something without taking it to the extreme. Nobody liked getting high as much as I did. I would take any chance to do mushrooms, acid, salvia, and whatever pill we could come across. Like any special interest it made me happy. And then, because of my sensitive nature, it started making me quasi-psychotic, and I had a period of intense, anxious delusions and a two-day episode of cutting into my arms deeper than I ever had. My meltdowns were frequent and intense and I would lock myself in the bathroom for hours while my mom slept, crying and trying to catch my breath and cutting myself to try to cut through the intense emotions. My reactions to drugs became worse and worse, more obvious and sudden, to the extent that I just had to stop doing them. Whatever felt good before was suddenly unbearable. Sensory seeking turned into sensory avoidance until most sensations made my skin crawl.

I met my boyfriend in high school at the same time I started doing drugs, but the beginning of our relationship was rocky and damaging. I had very little romantic experience despite my intense romantic obsessions. Even if I liked a boy I avoided him pathologically. This time I just let it happen but I had no idea how to read him and I constantly felt as if I was sailing through a storm. I didn’t know how to navigate it. Once we reached university I could not control the feelings that had built up from my mistrust, until I truly convinced myself that my existence was a mistake. I was intensely delusional that killing myself would “right” the world again, that by continuing to live I was impeding everyone else’s happiness. I wrote about my emotions on Tumblr fervently and researched suicide methods and locations and dates and I told no one because then they could stop me. At the same time, I obviously did not want to die. I’d done nothing of value yet. I promised myself I would go to the appointment with the psychiatrist I had been waiting months to see and I somehow ended up much more hopeful (and medicated) than before.

Up until this point I was thin. People constantly commented on it. My doctor was convinced I was anorexic, and put me on medication so that I would gain weight, without me realizing her intentions. I was not anorexic, but the slight weight gain caused an enormous physical discomfort and mental dysmorphia that triggered ongoing disordered eating that I’ve never quite shaken. The change in physical sensation that occurs with weight gain and loss is incredibly distressing to me.

After University there were sometimes still blips with my ongoing relationship. One night when I was feeling especially resentful I went out to watch my friend perform with another acquaintance. We met strangers who kept buying us drinks and I kept drinking despite trying to refuse. By the end of the night I had blacked out, and my “friend” had taken advantage of my drunken state. I was so sick I vomited all over their floor and the next morning when I woke up with most of my clothing off I had no recollection of what had happened. I blamed my resentment for the incident until I finally broke down and told my boyfriend what had happened and realized that I was not at fault. That friend apologized briefly the morning after but never again after that, despite my obvious avoidance and discomfort, and despite them having been in similar situations to me before.

All of these experiences were traumas. They were like branches, sprouting more branches, growing and growing. Each painful event only lead to another painful event. My life, since childhood, had been nothing but an attempt to understand the people around me only to realize that I was fundamentally different, and despite knowing that, trying over and over to connect with them, being taken advantage of and misunderstood until each interaction became a miniature trauma which gave birth to it’s own little traumas.

And of course, I can finally understand why. I can look back at every single experience, thought, feeling, interaction and explain each and every single one. I know why I could be told definitively that I had an anxiety disorder at 13-years-old, despite not knowing what anxiety was because I had felt that way my entire life. I thought I had adapted incorrectly, that my faults were all little broken parts of me that needed to be fixed, that if I just put in a little more effort I could change these things and suddenly maybe people would understand me. I know now that if I had been told when I was 8-years-old that I was autistic, and not that I was just a manipulative child who refused to behave like a proper little girl, who refused to sit still or apply myself, I would have had some baseline at which I could interpret myself. Whether or not I hated that diagnosis, I could have found others like myself, and I could have spent the next 20 years accepting my unique neurology instead of searching over and over for cures to a mental disorder that seemed untreatable. I worry often now that it’s too late. That even if I know now, I’ve lost all hope of functionality because I never learned to live with myself. I never knew how to interpret myself or that what I was experiencing was “autism,” and now it’s difficult for me to interpret others even when they’re also autistic. I know that I am young but I wonder how much time I’ve wasted and what value I can gain from it moving forward.

Suddenly I am a blank slate again. I don’t have to be anybody. I don’t have to be a mental illness. My unstable sense of identity (a core feature of BPD) is a rational development for someone who spent their life trying to be like a neurotypical person and failing continually. I’m trying over and over to carve out which parts of myself are real and to accept them, without using my new intense obsession with autism to frame my entire sense of self. I remind myself over and over again that I don’t need to have the same traits as every other autistic person. I try so hard every day to make sure I’m not adopting new traits just so I “feel more autistic.” But I do have clarity, and a newfound ability. I know what drains me and what empowers me – if I drown out sounds I can focus intensely. I can look at my memories where my skin crawled when my sister chewed her cereal and my blood boiled when my best friend told a story and I smacked my classmates head into the bus window because he was talking in a voice I couldn’t handle and I can avoid an evening of complete shutdown from having my mind scrambled with sounds. I can pace (or entirely avoid) social interactions which will drain me so I can make time for myself, so I can deal with my current stressors without melting down like I did three years ago in the same situation. I no longer struggle with thoughts of cutting myself because I know what the feeling of electricity in my nerves means.

Despite all this, it’s so difficult to manage. My current life situation is more difficult than ever before. I moved across the country 10 months ago to an apartment I can’t afford and have already switched jobs, something I’ve never done before (I left jobs for school or got laid off but never had the courage to leave one job and find another). When we moved 3 years ago I lost my first job. I was in a terrible depression. I had major meltdowns. I cut myself in places my partner wouldn’t see. Even after finding a new job, even after 2 years of adjusting, my mind was all over the place, I constantly thought of drowning myself, my eating disorder reared its ugly head when I tried to medicate again. If not for that frame of reference, my constant state of exhaustion would look awful. But this is me handling a situation well. This is me surviving without constantly wanting a way out. And despite that, I don’t have the energy to maintain myself on top of it all. I don’t remember how to plan meals, how to get groceries, how to spend an hour making food just to eat, how to feed myself more than once a day, how to not constantly spend my money in a desperate scramble to feed myself when I realize I forgot again and the hunger panic sets in. I spend my day avoiding the sounds of traffic and crowds and the hum of grocery stores and make it home to finally get something done and I sit down and do it and realize – fuck. Goddamn it. I’m hungry again.

Illustrations by me, from my project Bad Drawings About My Feelings.