Uncomfortable Labels

by Laura Kate Dale

  Uncomfortable

  Labels

  My Life as a Gay Autistic Trans Woman

  Laura Kate Dale

  Jessica Kingsley Publishers

  London and Philadelphia

  Contents

  Prologue: Being LGBT and Having Autism Is Actually Pretty Common

  Part I Life Pre-Transition and Diagnosis

  1. The Ignored Early Signs

  2. Being the Weird Kid

  3. The Teen Tipping Point

  4. Coming Out of the Closet

  5. Depression and Addiction

  Part II Living through Transition and Diagnosis

  6. Transition, and Learning to Read Who I Wanted to Be

  7. Squeezing a Late Youth into Adulthood

  8. I’m Proud I’m Not Invisible

  Part III Life Post-Transition and Diagnosis

  9. LGBT Spaces Are Not for Autistic Adults

  10. Transgender Conflicts and Autism

  11. Learning to Watch Your Friends Die

  12. Being a Trans Woman with Autism Is Sometimes Pretty Rad

  13. Roller Derby: The Intersection of LGBT and Autism-Friendly Group Support

  14. Where Do I Go from Here?

  Further Resources

  PROLOGUE

  Being LGBT and Having Autism Is Actually Pretty Common

  When I was born in the autumn of 1991, doctors determined that I was born male. To be fair to the doctors, as well as my parents, it was a statistically sensible assumption to make. I was born with a penis, with no ambiguous secondary sex characteristics, and in the vast majority of cases that fact is directly correlated with someone being male. Most people born with a penis are assigned male at birth, live their whole lives comfortably identifying as men and think very little about their gender beyond the surface level. For most people, sex assigned at birth based on sexual characteristics and a person’s innate gender are one and the same.

  I was also assumed to be neurotypical, meaning that I was not identified as having any characteristics that would necessitate a diagnosis of a mental health condition or disability. Spoiler alert for the rest of this book: it turns out both those assumptions were completely wrong.

  When I was just turning 18, I was diagnosed with Asperger syndrome, an autism spectrum condition now simply diagnosed under the umbrella term autism spectrum disorder. What that means for me personally is that I am at times under sensitive, and at times over sensitive, to sensory stimuli. When it comes to sounds, I struggle to filter out needless background noise from important primary noise, meaning in spaces with multiple noise sources I can feel like I’m being crushed under aggressive, invasive, distressing static that fills up my head. When it comes to nonverbal cues like subtext, facial expressions or body language, I’m under sensitive, and as a result, while I can with effort pick out those cues and understand their meaning, doing so requires immense amounts of focus, tiring me out quickly and leaving me exhausted.

  In combination, these lead to me often being tired and overwhelmed by social situations. That doesn’t mean I don’t crave friendship, affection and human contact like my peers, but I have to engage with them in ways that accommodate my struggles. I can for the most part handle social situations, so long as I control the terms of the interaction and have reliable constants I can control as safety points; but sometimes it all becomes a little too much to handle, living in a head that’s never quiet.

  While there was no known diagnosed history of autism in my family prior to my birth, both of my younger half-brothers who grew up separately from me were also diagnosed with autism spectrum conditions, leading me to suspect the condition may run on my biological father’s side of the family.

  Also at age 18, I started to come out as a transgender woman to some close friends, meaning that while I was assigned male at birth, I felt there was a distressing disconnect between my physical body and the way I viewed myself on a core personal level. I felt uncomfortable about my body, I felt uncomfortable being referred to as male, and as soon as I switched to female presentation and pronouns and a new name, I felt inherently more at home with myself. In the years since I’ve sought medication, undertaken surgery and filed legal paperwork to change my gender on all UK documents. As a woman who is primarily attracted to other women, I tend to identify myself as a lesbian. Maybe I’m bi or pan – labels are complicated – but I sure as heck experience same-sex attractions.

  So while the assumption when I was born was that I was or would grow up to be a neurotypical heterosexual boy, that whole idea didn’t really pan out long term.

  Maths time

  I want to talk a little bit about statistics before we go any further. I know, maths is usually pretty boring, but I promise this little bit of maths is really important to what’s ahead in the book. We’re going to talk a little bit about how common being LGBT is, how common being on the autism spectrum is and how common the overlap of the two is.

  In the UK, around 1 in 50 people are on Government records as identifying as gay, lesbian or bisexual in 2016,1 and around 1 in 100 people in the UK are diagnosed with an autism spectrum condition.2 Accurate statistics for how many transgender people exist in the UK vary depending on metrics used, with many transgender people not reporting their transgender status for fear of harassment or discrimination, but low end estimates are that around 1 in every 300 people in the UK is transgender.

  The reason I bring up these facts is that while on paper those statistics would suggest being trans, having an autism diagnosis and being gay would be pretty statistically rare, there’s actually a pretty high rate of overlap between the three. According to an international study by Dr Mark Stokes from La Trobe University in Melbourne, Australia,3 a noticeably higher than average percentage of individuals on the autism spectrum identified as non-heterosexual, felt at odds with their assigned at birth sex, or suffered symptoms of dysphoria as a result of transgender status.

  In an article in Spectrum, it was quoted that:

  Between 8 and 10 percent of children and adolescents seen at gender clinics around the world meet the diagnostic criteria for autism, according to studies carried out over the past five years, while roughly 20 percent have autism traits such as impaired social and communication skills or intense focus and attention to detail. Some seek treatment for their gender dysphoria already knowing or suspecting they have autism, but the majority of people in these studies had never sought nor received an autism diagnosis.4

  The reason for this preamble is because I am a gay, trans woman with autism. In life, I’m often assumed to be a statistical outlier, a fringe case, and have to muddle together a bunch of disparate support structures to get by day to day. I attend autism support groups, I get help for my gender dysphoria, but never in my process of getting diagnosed with both conditions was the overlap addressed by the medical community. It was never pointed out to me that the two might share any links, that fixing one might help relieve symptoms of the other, and that I might benefit from understanding the areas where my struggles could overlap.

  A statistically significant number of people, like me, are diagnosed with both autism and gender dysphoria, and there are a significant number of many and varied areas of life where the two intersect, clash, cause issues for each other and exacerbate each other. That’s what pushed me to finally sit down and write a book.

  I always thought I was alone. I never had anyone to tell me that my experiences made sense to them. I never had anyone else’s experiences available as evidence that what I was experiencing was real. That’s why I’m writing this book; it’s the book I wish I’d been able to read when I was younger.

  The book is structured like a memoir, following my personal life story from birth, up to toda
y age 27, and using my own experiences as a launching point from which I can talk about the intersections between LGBT status and autism. The book is split into three sections: the first focused on my life prior to transition and diagnosis, the second focused on living through the turbulent self-discovery years, and the last more focused on life after things stabilised a little. That final section is a little less memoir and a little more personal essay, but it’s still ultimately all about my experiences with autism and LGBT status, both the continued struggles I face and the joys I have found.

  My hope is that by the time you’re done reading, you’ll have a better sense of how autism and LGBT status overlap, perhaps understand better why people in both camps might struggle to fulfil the stereotypes of how they are meant to act, and maybe know a bit more about how to support people like me who just want to get on with living our lives, even if we’re a little out of step with those around us.

  Trigger warning: this book mentions suicide as well as drug/substance use.

  1 www.ons.gov.uk/peoplepopulationandcommunity/culturalidentity/sexuality/bulletins/sexualidentityuk/2016

  2 www.autism.org.uk/about/what-is/myths-facts-stats.aspx

  3 https://autismawarenesscentre.com/autism-transgender-gender-dysphoria

  4 www.spectrumnews.org/features/deep-dive/living-between-genders

  I

  ------------

  Life Pre-Transition and Diagnosis

  CHAPTER 1

  The Ignored Early Signs

  While I wasn’t diagnosed with Asperger’s until the age of 18, and I didn’t start to come out as transgender until later that same year, I struggled considerably with both autism spectrum symptoms, as well as feelings of distress and dysphoria surrounding my gender, from a fairly young age. As such, we’re going to start my story right at the beginning, and talk about how I went so long with both my autism and LGBT statuses unnoticed by the world at large.

  As a young baby, I simply did not sleep. Now, we’re not talking the way all newborns don’t really sleep; we’re talking extreme-level sleep deprivation for my parents. While most babies will sleep for a couple of hours, wake for a feed and a change, rinse and repeat, I simply screamed and cried and refused to sleep. Ever. I slept through the night once aged eight months, then not again until I was well over three years old.

  On a good night, my mother would be up around ten times in the night. On a bad night, perhaps double that, something that persisted for multiple years of my life. Initially my mother would get me to fall asleep by rhythmically squeezing my hand until I eventually dropped off. The problem was that once I fell asleep, so would Mum, who would then stop rhythmically squeezing, and I’d be right back to being awake and screaming. While it was not self-administered, this was the first recorded example I have of me being soothed by self-stimulatory behaviour, also known as stimming. The idea with stimming and autism is that, because individuals with autism like me are often overwhelmed by unpredictable sensory information, stimming is a way to introduce and focus on something that is predictable. In a loud room, I rub my hand or rock my head, and I know what sensory input to expect. I can focus on the known and the predictable, over the cluttered and unknown, and I find it easier to stay calm and relaxed. As a child, it’s clear I already needed the comfort and security of predictable sensory information in order to feel safe and relaxed enough to sleep.

  When it became apparent that the rhythmic hand squeezing wouldn’t work, because I would wake as soon as the squeezing stopped, my parents would take it in turns to put me in the back of the car, strapped in a car seat, and drive around aimlessly, because seemingly being in the back of the car was one of the only things that would make me fall asleep for any notable amount of time. Looking back, I guess it was probably the gentle rumble that helped. Considering my later diagnosis on the spectrum, I’d guess that baby me was just a bit overwhelmed by all the varied sensory information that’s present in a room that seems quiet for someone not on the spectrum. A predictable hum and rumble that drowned out other sensory information would eventually get me to drift off. Once I fell asleep, mum would leave me sleeping in the car seat for fear of waking me.

  In a journal kept by my mother while I was growing up, she detailed one night where she attempted controlled crying as a way to get me to sleep. After two hours, she entered the room to find that yes, I had fallen asleep, but I’d also been crying so violently that I’d thrown up all over myself. Rather than clean me off, she just left me, for fear of waking me up. I don’t blame her for that in the slightest; it sounds like she spent multiple years at the start of my life deeply sleep deprived, but that hopefully gives a sense of the fact that me not sleeping wasn’t just some average baby waking up in the night stuff.

  In hindsight, it’s easy to look back at my extreme lack of sleeping in my early years as evidentiary of my being on the autism spectrum. It’s an observed fact that people with autism often produce less melatonin than is normal, which when paired with sensory oversensitivity makes sleep difficult. The problem is, doctors and family members do not tend to take parental concerns of a non-sleeping baby seriously. Doctors often just suggest the same handful of baby sleep techniques over and over. Family members tend to dismiss the lack of sleep as a variation of normal. I’d argue that the fact I deprived my parents of sleep, to the extent that it was thrown around as an excuse in their divorce, suggests this was something abnormal enough it probably should have been picked up on. But it wasn’t because first-time parents’ concerns about their children are often dismissed as unnecessary concern. Indeed, my mum’s concerns about my sleep were not taken seriously until she left me with her sister for a week. She warned her I did not sleep. Upon returning me to my mother, all my aunt had to say was ‘I know you said they don’t sleep, but I didn’t realise you meant they DON’T SLEEP.’

  This particular sleeping issue ended up lasting well into my adulthood, with me having to find ways to get around it over the years. Between the ages of 6 and 18 I would repeatedly listen to the same audiobook, Harry Potter and the Chamber of Secrets, on cassette on repeat. This not only helped to drown out the sensory information that was keeping me awake, and gave me something to do while waiting for sleep to come, but I ended up knowing the book well enough that I could predict what was going to happen well in advance, leading to it functioning well as a predictable sensory input. It was a sensory input that didn’t end when I fell asleep, but would eventually stop itself when the tape reached its end. It ran just long enough for me: to fall, and stay, asleep.

  As a toddler, one of the first issues I was able to verbalise was my distress at an inability to fix broken objects, an issue that has only worsened over time. As a very young child, if a balloon I had popped, I’d ask my mother to fix it for me, not to replace it with a new one, but to repair and fix the balloon. As an adult, I look back at those early experiences as a precursor to my issues trying to fix the unfixable as an adult. So, as an adult, here’s how these incidents tend to play out. Earlier this week, I broke a chain latch on my front door. I ran downstairs from my office to answer the door, forgot to unchain the door before swinging it open, and managed to snap part of the fastening, breaking the metal apart completely. When I break something, my brain creates an item, marked urgent, on a mental to do list. Fix that thing, you broke it, so now it’s incorrect, and that’s your fault and responsibility, so fix it right now. Sometimes, like the balloon or the door, it’s not something I have the skills, tools or ability to fix. I had snapped a piece of metal, and I do not own welding equipment. Sometimes, fixing the item is just logically impossible. My brain really doesn’t like that. I’ll usually try to fix it anyway, repeatedly bashing my head against the problem until someone makes me feel abnormal for persisting, or until I spend so long on it that it interferes with the rest of my day.

  This is where my brain starts to freak out. It’s an urgent task, so I need to prioritise it, but it’s impossible to actually complete. I know logically I shou
ld just replace the broken item, but replacing it isn’t fixing it; it’s still broken, and that’s still my fault. Replacing it doesn’t mean that it’s ticked off as fixed in my head. At this point, the anxiety builds. My brain just starts getting louder and louder, more and more difficult to ignore. ‘Fix it, fix it, it needs fixing, it’s your fault, you did this, why isn’t it fixed? You can’t fix it? It’s going to be broken forever because of you. That’s your fault. Why would you do that? FIX IT.’ My brain just shouts ‘IT’S BROKEN THOUGH, SO FIX IT FIX IT FIX IT!!!!’ over and over, until normally I end up having to hit at my head to dislodge the thought, as it just consumes me with anxiety and fear. I once experienced this because a loaf of bread, which can’t have cost more than 75p, got squashed. It was in no way irreplaceable; my brain just couldn’t get over the fact I let something break, and couldn’t fix that situation.

  Jumping to when I started school, when I was a little more able to communicate my needs, a lot of more obvious autism spectrum symptoms and diagnostic criteria began to surface, but ultimately went undiagnosed in spite of multiple in-school visits from the mental health service. Around age five, my mother recorded accounts in her journal of me developing a series of repetitive tics, which she could not seem to shift from my behaviour. I would tap my head as I walked, make beeping noises on a predictable basis, hop every third step, and every repetitive action she discouraged out of me was quickly replaced by another. They were always controlled, identical, repetitive actions, done consistently, and were more pronounced when I was tired or anxious. Again, looking back at my mother’s early accounts, this phase of my life was me working out the self-stimulatory bit of self-stimulatory behaviour. This was me as a child realising that I could self-administer an equivalent to those rhythmic hand squeezes that had helped me sleep in my earliest days, at a time where I had to quickly learn to manage socially in order to cope with school. The head tapping was tactile stimming, the beeping was auditory stimming, the hops were action stimming; they were all serving a purpose, placating a need to know what was going to happen to my senses.