From here, things got rough for a while. I was still living at home, but the lack of structure created by moving from GCSE education to A levels was taking its toll on my mental health. I reached a point where I was having to be self-motivated, in an incredibly fluid routine environment, and things didn’t go well as a result. Where I had been a very successful student at GCSE level, I failed my A level exams twice in a row at two different schools, due largely to having too much openness and too little structure in my routine. There were no longer any formal seating plans, I might have multiple teachers for the same subject, I bounced between different start and finish times every day and was entirely responsible for finding a way to create a stable structure out of things. After I failed my exams for the second time in a row, I panicked. My entire life plan up to that point had been school, then A levels, then to go off to university. I had planned my life around this traditional education to employment pathway, and without that I honestly had no idea what I was meant to do with my life. The world was completely wide open, with no predefined path, and no planned options, and I had no clue how to respond.
I think the way I ultimately responded says a lot about where my life was at that point. I kept going to sixth form, in spite of no longer being enrolled there as a student. I didn’t tell my friends I had failed to get accepted to my second year, I didn’t tell my parents; I just went to the school cafe which was open all day and the main social area, socialised for a few hours and then went home. I couldn’t work out how to handle the idea that I had no remaining direction for my life, and I was terrified of the consequences of admitting to my parents that I had failed my exams a second time. In hindsight, it’s obvious I could have, and should have, just talked to my parents and asked for their help and support to make a new plan for the future. I didn’t, not because they’d ever done anything to make me feel I couldn’t safely talk to them, but because I felt like everything I was doing in my life was making me a failure without a future. Having been treated as one of the bright kids at school, I thought the fact that I was suddenly failing would be put down to laziness, and didn’t know how to explain the factors causing me problems. I was afraid that they would see me as having given up on life, as having decided that post-autism diagnosis I no longer had to try and could just laze through life, and was afraid that they would be just as afraid as I was about my uncertain future. I pretended to keep going to college for several months, before eventually being caught out by my mother. She contacted the school to check in on my attendance statistics, learned I was no longer a student, and I had probably the most difficult day of my life as a result. I came home filled with guilt, unsure how to explain to my mother why I had done what I had done, failed to give any reasonable explanations, and went to bed without dinner to cry myself to sleep.
The months that followed involved invasions of privacy, which limited my ability to explore my gender identity safely at home, and robbed me of the feeling of comfort and security that four solid predictable walls provided me as someone with an autism spectrum disorder. I was subjected to rules, stipulations and slowly moving goalposts regarding when and how my transition would eventually be supported. I was a depressed young adult whose actions had led to them having no privacy, no plans for the future, no ability to explore who they were and no idea how they were ever going to get to a place in life where they would be happy about who they were. You could argue it was my own fault, but it was a very rough time in my life. I remember that time in very vague terms. I remember a depressed haze, a muddle of days and weeks filled with sadness, loss, confusion and guilt. I remember having no clue who I would be a few years down the line, or if I would even still be here. Probably the worst part of it all was that I knew I was depressed, but I was afraid to get help, for fear it would stop me being able to get help transitioning.
Things did eventually start to pull back together. I got a job at a budget supermarket, I started making enough money to pay rent to my parents, I was able to start getting some privacy back into my life and, after a considerable amount of time, I was able to start presenting as female here and there at home. My parents were not happy with me spending most of my time alone in my room after work; they wanted me to contribute to housework and socialise more, but I honestly just wanted space to talk to friends online who fully accepted me as Laura, and were willing to let me just explore who I was going to be going forwards. I ultimately moved out of my parents’ home, into a tiny one-bedroom flat above a pub with my girlfriend, where I was able to present full time as female without any worry of being misgendered or dead named. I found it tough, but my life was becoming my own, and I was starting to find the freedom to work out who I was all over from scratch, on my own terms.
Coming out at work didn’t go very smoothly. On paper, my workplace appeared reasonably supportive. When I brought up the topic of transition with my boss, and explained to him that all those days I had to leave work early were for therapy about gender, he was understanding enough to get that he had to do things right and couldn’t prevent me transitioning. I took a week away from work, was given a new female uniform and name tag, and came back to work as Laura. Employees were generally quite good about things, for a few months, until things went wrong. In terms of employee response, a few staff members got funny about me using the women’s bathroom, slip ups with my name and gender became more common, I walked in more than once on transphobic discussions about me and I found out that at least one staff member had requested not to be put on shifts with me following my transition. I ended up leaving the job within a few months of transition, but thankfully had a backup job already lined up. During my time working at the supermarket, I had been spending most of my free time writing unpaid articles about video games on the internet. It started as a way to pass the time and keep myself engaged at work. I had always enjoyed talking about video games with my peers, and I was aware that there were people on the internet who did it as a full-time job. I wasn’t sure how to make the leap from unpaid to paid work, but I knew that a portfolio of free work was a place to start. I came up with ideas in a notebook while at work, wrote them when I came home at night and repeated this every day for quite some time. When I left the supermarket job, I took a risk. I had a few months’ savings and I had a bit of an audience online, so I took one month to try to make enough money to survive purely by writing about games. It was a career I had only ever done under a female name; I’d been writing as Laura from day one, and in that first month I had made just enough money to scrape by and survive. From then on, I was only ever Laura. I was working a dream job, I was living full time as Laura, I was in a phase of my life where people only knew me as Laura, and that was sort of when I feel my life truly began.
I was Laura. I was out in the world, I had a career goal to build and work through. My life was my own, I could set my own predictable schedule that didn’t change from one week to the next, and I could freely explore who I was and how I wanted the world to see me. This was when I started to finally build a life that worked for me, as a woman and as an adult living with autism.
CHAPTER 5
Depression and Addiction
During this same turbulent few years of my life, while I was just starting to go through the NHS for gender dysphoria treatment, there were regular horror stories about people being refused trans treatments if they were depressed. I know plenty of cis people who have depression; depression isn’t some issue that’s inextricably tied to being trans, making it impossible to treat dysphoria until generalised depression is gone. There’s no real reason that being depressed should stop the NHS from treating your dysphoria, but I saw it happen time and time again.
NHS waiting list times in the UK when I started trying to seek dysphoria treatment were several years long, and they’ve only got worse over time. Gender dysphoria is one of the few mental health areas currently where waiting lists to even get seen by someone, let alone receive any support or treatment, are commonly longer than two years, an
d if you’re still mid-puberty when you start that waiting list, time is ticking. Every month spent waiting for treatment is another month of changes your body has made that you’ll have to work to fight back against. Hearing that trans people who reported depression were made to get that sorted first, then had to join a waiting list for treatment at the bottom ensured I never got treatment for my depression. I denied it existed to doctors because I was afraid of having to live through potentially two or more extra years before getting the help and treatment I needed.
As a result of living for several years with untreated depression, I initially struggled severely with suicidal urges, and suicide attempts that thankfully failed. However, I found a different source of support instead, one that didn’t involve alerting medical professionals to my struggles. I began self-medicating my depression with addictive chemicals.
Addiction
It took me until well into my 20s to properly come to terms with the fact that I’m prone to addiction. It wasn’t a sudden revelation, but a slow repeated awareness that got harder and harder to ignore. I am not necessarily physically addicted to chemicals, but I am prone to becoming addicted to short-term fixes for long-term mental health struggles.
For a long time, it was generally assumed by the medical community that if someone has autism they’re considerably less likely than the general population to struggle with addiction. Many early studies into addiction and autism took place before Asperger syndrome and other similar conditions were brought under the autism umbrella, and while yes, this did provide a set of data where individuals with autism had lower rates of alcohol and substance addiction, the data failed to correctly understand the causes for that data, made incorrect assumptions based on it and had too narrow a scope of what constituted addiction. By focusing these early studies largely on the types of individuals with autism who require full-time care, the focus was on individuals who largely had less access to addictive substances like drugs, alcohol or cigarettes, and the studies read that lack of access and the resulting lack in addiction as indicative of a predisposition to finding those chemicals less addictive than the general population. It’s understandable why this assumption was made, because from the outside, it would make a lot of sense within the framework of what medical professionals understood about autism as a condition. Most individuals with autism are generally rigid rule followers, and most addictive substances are forbidden, so it stood to reason that those with a brain predisposed to following rules wouldn’t try, or get addicted to, forbidden substances. However, if we look at more recent studies focused on self-sufficient individuals on the autism spectrum, those capable of supporting themselves without long-term support, the results paint a very different picture. If you focus on the types of individuals with autism that are in a position to experience peer pressure, to succumb to that peer pressure out of a desire for social connection and who have access to addictive substances of their own accord, addiction rates are actually much higher than is average in the general population. One fairly recent Swedish study, which focused on people with autism who had average or above average IQ, found that those individuals experienced more than twice the statistical average rates of substance addiction.1
As an individual living with autism who has also struggled with substance addiction, I can attest that there are a lot of similarities between how my brain feels when experiencing substance addiction and when experiencing bouts of autism-based addiction and compulsion. Autism, similar to other mental health conditions like ADHD, can cause many, but not all, sufferers to have counter-indicative responses to specific drugs. Nobody’s quite certain why it happens, or why it only affects some with the condition rather than all, but caffeine as a drug is a perfect example of something that often does the opposite of what it is meant to do for individuals with autism. As you may have guessed, I am one of the individuals with autism who find the effects of caffeine counter indicative, meaning that rather than leaving me shaky and over-energised, I find it calms and relaxes me, providing me with a mental quiet I normally do not get to experience. I can’t tell you why, but drugs that are meant to leave a person brimming with energy, bouncing off the walls or rushing around often simply do not have that effect on me. I do become focused, but more as a result of relaxing, tuning out a small portion of the normally overwhelming sensory information in the world around me, and getting my brain to disconnect from the constant mental chatter that overwhelms my head. As a teenager, when I first started trying drinks with a high caffeine content, I was really caught off guard by the effect it had on me compared to my peers. It was the first time in my life I really got an opportunity to experience a mind where my autism symptoms, not that I knew initially that was what they were, got just a little more quiet.
As someone whose Asperger’s causes them to have a somewhat addictive personality, I ended up finding myself pretty cripplingly addicted to caffeine for a number of years. I would drink upwards of ten cans of an energy drink a day, chugging them down like they were fruit juices. I would chug down the reserves of them that my parents had in the house for themselves, I would spend my pocket money on big 1-litre bottles, I even at times stole money from my parents to buy more caffeine drinks. I somewhat lacked the vocabulary at the time to explain to my parents that I was addicted, or quite why. It was the first taste in my life of a brain less cluttered, less full of overwhelming, uncontrollable static. It was my first experience of getting to quiet down the mind, if only for a little while, and feel a little more on top of my senses. I have cut caffeine pretty much completely out of my life at this point, mainly because my consumption levels scared people close to me, but I still as an adult find it oddly calming to consume. It’s not like it makes my autism symptoms go away completely, far from it; but it does offer a little control, calm and quiet in a world that often does not grant my brain that luxury.
Addiction however has been a persistent issue in my life, even after pushing aside caffeine. It was my first substance addiction in life, but it was not my first battle with addiction ever. My earliest experience with addiction was stimming, and my battle to keep that under control in order to avoid social ridicule. With both stimming and caffeine consumption, I had things I could do to reduce some of the noise and repetitive thought loops that so often fill up my mind from day to day. While they were both useful coping mechanisms, they ultimately led to negative outcomes in my life, be it getting into trouble for taking my parents’ caffeine supply when I was not supposed to or getting mocked and socially excluded by my peers. In both cases I found myself just craving relief from a brain that was incessantly filled with static, constant overwhelming bombardment, and the relief I was provided with often outweighed the negative consequences I knew would result. Trying to ignore this caused my head to shout at me like a broken record, unwilling to focus on anything else. Many of the same things could be said for my obsessive need to organise, my obsessive need to line things up, my obsessive need to plan. They were all ways to calm my mind that offered a calm and quiet that I craved. I was addicted to short-term respite from the chaos.
It shouldn’t come as a huge surprise that these experiences feel so similar, as they both affect largely the same areas of the brain. Studies have shown that individuals with autism often are compelled to engage in repetitive actions by the same brain regions that cause substance addicts to crave their vices, the section of the brain that automates actions and treats them as a necessary part of daily life that can’t be ignored. What is vitally important to note about these addictions is that they were all incredibly short-term solutions to a very long-term problem. I’ve spent my whole life living with a brain that doesn’t behave like most: a brain that is never quiet and calm. Stimming and drinking caffeine both calm my brain and allow me to get by, but both only help alleviate my symptoms while they’re acting on my system. If I stop stimming, or the caffeine leaves my system, I am back to square one. This is why both are so addictive; they offer a moment of respite from the chao
s, and returning to that lifetime of volume and static is exhausting and distressing enough to push me to return to my addictions.
Day to day, I live with a brain that feels like it never stops or slows down. It’s constantly trying to process every sense, no matter how small or unimportant, and trying to find the important information in a wave of static. It’s constantly fixating on plans, making me check and recheck and write down and recheck times and locations and specifics of plans. It’s constantly repeating the same phrases over and over in my head, screaming at me to focus on them. It’s constantly fixating on unimportant topics, not letting me put them aside mentally and get on with what I want or need to do. It’s screaming at me that foods have too many textures, or that I am reading social situations wrong or that I am a burden and should just stay away from the world. It creates barriers between me and those around me that are hard to work around, and it makes every conversation a planned out exercise in social etiquette. Living with an autism spectrum condition is exhausting, and there are no known treatments to alleviate the symptoms. There’s no prescribed medication available to offer me respite. I felt like my choices were to live this way every day of my life, with no relief, or to find my own ways to quiet and calm my brain, if only for a short time.
While it’s no longer an issue in my life, I also struggled with alcohol addiction in my mid- to late teen years. I would lie to my parents about where I was going, and consume large amounts of alcohol on a beach while under the legal drinking age. I found that it dulled my senses by virtue of making me notice less across the board. I just generally ran a bit slower and didn’t notice so much of the sensory information around me. It wasn’t that I was filtering out the unimportant information and just focusing on the important; it’s that across the board I was taking in less information. I picture my brain as having three dials: one for important information, one for unimportant information and one master dial for all information. Rather than alcohol turning down just the unimportant dial, it turned down the master dial. Everything was less intense, and my brain’s obsessive repetitive thoughts just slowed and lessened. On top of that, people consuming alcohol tend to act a little weird and unusual, which allowed me room to fit in a little more easily, with less of my mind dedicated to worrying that I wasn’t doing the right thing for the social situation. When drinking alcohol, everyone’s a little weird. When consuming alcohol, I had something to blame my weird social behaviours on, an excuse to not worry if I acted strangely. A reason to not be so judged. Much like caffeine and stimming, my addiction to alcohol centred around its nature as a short-term fix for a long-term brain state. I could get drunk and experience relief from my symptoms, but as soon as I sobered up I was back to square one, and the temptation was there to get drunk again to reclaim that sense of respite.
Uncomfortable Labels Page 7