This was also the same sort of age my mother first started to notice and record accounts of me struggling with sensory information, even if her accounts didn’t yet hone in on the fact that my distinct struggles were linked to each other. She made reference to me fidgeting with clothing, something I struggled to articulate was due to finding tags and certain fabric textures incredibly uncomfortable to wear. Tags tend to be made of a more rigid fabric than the rest of the clothing they’re attached to, and stick out at a slight angle, causing them to be constantly pressed lightly into the skin. One of the reasons I specifically had fabric texture issues on clothing is due to the movement aspect of wearing clothes. If clothing is at all loose fitting, it tends to shift during movement, causing uneven textures to shift in unpredictable ways across the skin. As I grew up, I realised that clothing with fewer irregularities, as well as clothing that fitted tightly on problem areas of oversensitivity, helped a lot. Basically, avoid wool, and get sleeves and a neckline that sit well on the skin and don’t feature tags. Don’t wear anything with repeated numbers of seams, or anything that is made of multiple texture types.
From birth onwards I also really struggled with the sensory aspects of having my hair cut. I would scream blue murder, wriggling and writhing to escape the perceived torture being inflicted upon me. As an adult, I still tend to put off getting my hair cut, but I can at least now articulate why. One aspect is that my scalp is incredibly touch-sensitive, which is a pretty major barrier when haircuts necessitate someone touching your hair for extended periods of time. On top of that, as hair is cut, it tends to fall, leaving unconnected hair falling across skin, something which plays havoc with my oversensitivity. The light, ticklish sensation of hair falling, then lying on the body in an uncontrolled manner, is incredibly overwhelming for me. My brain tries to keep track of where it all is; I try brush it off, disengage from it, collect it together – do anything but leave it just lying randomly scattered across me. I can handle it now if I have to as an adult, but for many years it was a source of great mental distress, as my brain tried to keep track of far more at once than it was capable of.
Around this time my mother also noted that I had difficulty eating a relatively wide range of foods, for reasons I struggled to articulate well into adulthood. I know now looking back that the issue was that, due to texture oversensitivity, I really struggled to eat foods that featured more than one texture at a time. Picture pineapple for example. Initially it’s a watery solid. Once you bite into it, it’s suddenly a far smaller solid, and a huge amount more liquid appears. Then it’s a gelatinous solid, containing chewy pulp in the centre. There are so many textures going on at once, it can quickly get overwhelming. At the time I failed to explain this properly to her, telling her I couldn’t handle the texture of all fruit, to which she responded that all fruits had different textures. The issue is that while yes, fruit textures are all different, they all share in common the dual-textured nature that was causing me issues. It’s also why I grew up eating my meals as separated sections, with one food eaten, then the next, then the next and no two foods sharing a mouthful. It all had to stay simple so I could process what was happening.
She also started to notice around this age that I struggled with undersensitivity when it came to temperature, wearing temperature-inappropriate clothing all year round. I would wear heavy jumpers in the height of summer, t-shirts in the dead of winter and many variations in between. I was ultimately unphased by changes in temperature due to undersensitivity, but highly bothered by clothing due to oversensitivity, and as a result wore clothes that worked that day for texture reasons, not for temperature appropriateness. To this day, I take baths far hotter than is recommended for the average person, because water of extreme heat helps me to feel the temperature in an enjoyable way that just doesn’t happen with regular warm water.
I also struggled at this time with pressure undersensitivity, and found that the consistent pressure of water when swimming helped a great deal. I could also place my head under water, and quieten the world, which encouraged me to routinely swim long distances under the water.
Lastly, there’s how my visual oversensitivity overlapped with my synesthesia, ending up in a story that took me nearly a decade to explain to my parents: the tale of Allergic Yellow. For those not in the know, synesthesia is a condition where some people’s brains seem to get their wires a bit crossed when it comes to certain types of sensory information. For some it means sounds have flavours or numbers have temperatures; for me it manifests as colours having temperatures and tastes, which has been tricky for someone with sensory oversensitivity.
Picture the scene: I’m six years old, and our class is being taught about allergies. One of the kids in my class had a peanut allergy, and we are told that she needs to stay away from them because otherwise she’ll feel very ill. It’s at this point that 6-year-old me tells my teacher I am allergic to the colour yellow. At this moment my teacher panics, worrying I have an allergy the school has not been made aware of. My parents informed the teacher that, no, I was not allergic to yellow. Probably a decade or so later, I learned about the term synesthesia, and it all sort of clicked into place. When I see specific shades of yellow, my face gets incredibly hot, and I get this weird sour taste in my mouth that makes me feel ill and dizzy. I’m generally oversensitive to sour tastes as it is, and as a result the colour yellow used to trigger taste oversensitivity episodes in me. I get now what I meant, saying I was allergic to yellow, even if I lacked the vocabulary to explain it properly.
The thing is, none of these attributes were picked up, in spite of multiple visits from special needs assessors when I was first in school. I think a big part of this is ultimately tied into how both being on the autism spectrum, and being transgender, affected adult perception of my societal adaptation. You see, there are stereotypes about children assigned male at birth, and very few of them applied to me growing up. There’s an expectation of brashness, over excitability, loudness and emotional closure, alongside a specific emotional range. These are obviously not absolutes, and many of these attributes may only exist because parents assume they’re meant to exist and nurture those behaviours accordingly on some level. But the point is that I didn’t line up with a lot of them. I was a quiet, shy, reserved child, who was sweet and did what they were told and was always in the right place, at the right time, doing what was expected.
Due in part to the prevalence of the ‘extreme male brain’ theory of autism spectrum conditions in the 90s, and the fact that clinicians had not yet shaken themselves free of the association between an autism diagnosis and perceived ‘male’ behaviour, my not fitting into traditionally masculine trait categories worked against me. Many of the more disruptive aspects of traditionally male stereotypes were in the 90s part and parcel of a clinician’s willingness to diagnose autism, and because my autism presented in a way that was more in line with people assigned female at birth with the condition, I was just somewhat overlooked.
While there’s not yet any firm list of differences between boys with autism and girls with autism, there are several observed differences in autism presentation that are now generally accepted as existing, and being overlooked by current diagnostic tool assumptions. These are not hard and fast rules, but some things that can make it troublesome for women to achieve a diagnosis. Girls with autism tend to have less trouble than their male peers socialising in their early years, but have a spike in difficulty entering their teen years. Girls with autism are more likely than boys to demonstrate a comorbidity with SSRI-treatable depression. Where boys with autism tend to be disruptive to gain access to physical items, girls with autism tend to be disruptive more often for human attention and contact. Girls with autism tend to be more passive, self-isolating and withdrawn, compared to boys with the condition who tend to be more outwardly aggressive. Girls with autism are also often more able than their male peers to follow pointing fingers and to gaze track.
While none of the above are
absolutes, they are factors that are important, because they’re all aspects of autism that applied to me growing up, in spite of my being designated male at birth. I was designated male, but was displaying more traditionally feminine expressions of autism. Pair that with the fact that twenty years ago these differences were overlooked by the male-focused diagnostic criteria of old, and you start to see how the diagnostic system overlooked me.
Thanks to the introduction of a predictable daily routine, something absent before starting school, I suddenly had a plan I could follow. There were places to be, things to do, and if I did the things I was expected to, not only could I predict what was to come, but I was also praised for doing so. I think that was kind of the problem. Because the introduction of routine and structure in the short term helped me to cope better with day-to-day basics, I was seen as functioning well. In some areas I was overly organised, almost to a fault, which when you’re a young child is treated as a blessing in disguise. Looking back, the areas I was overly organised in were the ones built into my regular routine. If it was something that happened often, I overly planned for it to the point of distress if the plan was altered. In other areas I struggled to focus and keep my head on straight, but when you’re a young child that’s just brushed aside. There’s nothing as a child that it’s vital for you to do, so a bit of disorganised forgetfulness regarding one-off tasks that are not part of a scheduled routine isn’t flagged as a problem. It was always unexpected one-off events I forgot to plan around or prepare for, because they were not a part of my day-to-day in the same way as the rest of my life. Nothing in those early years of school forced me to break from my routine too regularly, and as such I just got on with life.
I was able to fake social ability for the first few years of my school life, because lucky me, my obsessive area of interest and knowledge overlapped briefly with something that it was socially acceptable to be obsessed with. I became obsessed with the Pokémon series, the games, TV show and trading cards, just as it was becoming big in England. If I’d been obsessed with train pistons that might have flagged up as an obsessive interest, but because my obsessive knowledge-seeking centred on knowing the move learning levels, evolution levels and spawn rates of Pokémon during their explosion of popularity, I was briefly befriended at school by children who found my obsession beneficial. The problem there was that when their interest moved to a different topic, but mine remained on Pokémon, my social safety topic fell away and my social difficulties resurfaced as an issue. By the time I was struggling, the special educational needs officers had already visited, not offered a diagnosis, and set off into the wild again. I was seen as an exceptionally well-behaved child, because rules are structure and you don’t go against structure, which was paired with me having a more stereotypically feminine emotional range and set of mental characteristics. I think the adults around me just kind of saw that as something not to mess with. I was a sweet, well-behaved child, so clearly nothing was wrong. My symptoms were merely odd, unusual quirks of a sweet, calm mind and a non-disruptive child, so there was no need to poke around and see if anything else was going on. Ultimately, the barrier to diagnosis here was that I wasn’t disruptive enough to be seen as needing to change my behaviour, and was not put into situations that caused those kinds of symptoms I was experiencing to exacerbate to the point where they inconvenienced others. I wasn’t stereotypically masculine enough to ring alarm bells to clinicians thinking about the extreme male brain theory, and I just slipped through the net. I clearly had the diagnostic criteria already, but they were not enough of a problem, in the correct ways, to be seen as needing help.
Transitioning to my relationship with gender
Switching tracks a little, let’s talk about some of the early symptoms of gender dysphoria I presented, and the reason some of the early signs of my gender presentation were ultimately ignored.
I’ll start off with how I personally know I am transgender, and what that meant for me as a child, versus as an adult. For most people, the physical sex we are assigned at birth based on a look at our genitals lines up with a few different aspects of how we interact with gender as a thing inside us that we feel and live with. Generally people are comfortable being referred to by the pronouns associated with their birth-assigned sex, they’re comfortable with the majority of the social expectations and behaviours associated societally with their birth-assigned sex and they’re comfortable with the physical body traits of their birth-assigned sex. So, for me to have been cisgender, a term here used to refer to someone comfortable with their sex assigned at birth, I would have had to be comfortable being referred to as he/him, be comfortable with the societal expectations that come along with the idea of masculinity and be okay with the body that being assigned male at birth left me with.
For me, that was not the case.
Growing up, I felt an intangible discomfort with being referred to as male, as a boy or being referenced with masculine pronouns. I couldn’t explain why, but the terms just felt wrong, somewhat alien and disconnected from me. I also felt as if, in terms of societally expected norms, I fell more in line with how women in the world were treated, as opposed to men. While I initially didn’t struggle with my male assigned at birth body, this changed considerably upon the onset of puberty for me.
While you can have people assigned male at birth who enjoy feminine-coded interests and that doesn’t automatically make them transgender, for me it was the combination of discomfort with all three areas of my relationship to my birth-assigned sex that convinced me this was what was right for me. I was always uncomfortable being called a boy, I felt like I was more akin to the women in my life, and as secondary sex characteristics develop at puberty it became apparent that no aspects of living as male were working for me.
I knew from a very young age that I was uncomfortable being referenced as male, and that I wanted to be treated like the women I saw in the world around me, but it wasn’t until puberty that the pieces really fell into place.
My childhood struggles with gender
Looking back at my childhood, being a boy never quite felt right, in a way I struggled to really articulate until far later in my life. I was aware from the time I started school that something was different between myself and my male peers, but I was also aware that I didn’t really fit in with any of my peers due to my sensory and social differences. I attributed much of my early gender-related discomfort to the same root cause as my struggles with social communication, struggles with sensations and struggles with conforming with my peers. I assumed I was just a little different, a little odd, and that if those sensory and social issues were not a big problem, that the rest of my issues must not be either.
I frequently found myself having the thought that I’d prefer to live life as a girl, without any quantifiable understanding of why. I wasn’t yet struggling with my body; there was just some part of me that felt that was what was supposed to happen. I was aware I wasn’t the same as the people around me, and I just assumed my discomfort with my own gender was the same as my struggles with autism, just me being a bit odd. With a lack of transgender representation in media, I had no examples of people like myself to look at, to help me put a name to the odd discomfort I suffered.
During primary school, a lot of the reason I didn’t try to talk about my gender issues was a result of living with a younger sister, and watching the differences in the ways she was treated when compared to me growing up. My parents treated my sister pretty differently. She was given different social and emotional expectations, she was treated with a different level of attention and she was spoken to in a different tone to me, and all of those aspects of how she was treated felt more in line with how I felt I should have been treated. The support structures she was provided felt like the support structures I needed. The clothes she wore, the tone of voice used around her, the types of friendships she was offered and the ways she was addressed all felt more like what I was supposed to experience, and I knew the reason I wa
s denied those supports was because of my gender. She had friends who got to laugh, share, hug and create. She had all of her creative ambitions nurtured and supported. She was given pocket money into her teens, where I had to get a job, because doing a paper round like me would put her at risk. The expectations on her were so different from the ones placed on me, and that only hammered home how different we were, and that I wasn’t seen the same way she was. It hammered home that she was female and that I was not seen to be female.
I was a boy, and every part of my life was reinforcing that I was set to live a boy’s life, and there was no fighting it. I didn’t understand why I was being treated differently from a sibling I felt inherently similar to, in some intangible way. I tried at times growing up to break out of those gendered expectations, and make my parents see that I wanted to be like my sister, but ultimately there was a push back that reinforced that I wasn’t allowed to escape the masculine mould, no matter how much I didn’t feel like my male peers. I took up dancing several years after my sister, wanting to learn some of the grace and elegance that appeared to symbolise outward feminine expression, but I ultimately quit because my father insisted that if I didn’t stop, I would be bullied by my male peers. When my parents made my sister a paper doll of a woman, with paper outfits which could be layered on top in order to play dress up, I asked for one too. After some discussion, my parents instead made me a Harry Potter doll, for fear I would be bullied and teased if I had a female doll to dress up. Both times, I didn’t fight. I was already being bullied by other children for being different, and I didn’t want to encourage that continuing or exacerbate it. I was different, and I knew that. All it took was a suggestion the bullying would get worse in response to me expressing femininity, and I quickly shoved that femininity as deep down as I could. Because I was already being bullied for my autism symptoms, the fear of being further bullied for expressing femininity, or rejecting masculinity, caused me to not tell people something felt inherently wrong to me about being male.
Uncomfortable Labels Page 2