I kicked my addiction to alcohol at around age 20, after a day where I had to admit to a friend I had brought vodka in a water bottle to a social event taking place in the morning where it was very clear nobody else would be drinking. I was forced to face the fact that I was relying on it as a crutch to manage social situations, rather than focusing on learning sober coping techniques to manage my autism symptoms in social situations. For a time, I cut out alcohol completely, before reintroducing it to my life under very strict conditions. No drinking alcohol alone by myself, no friendships where I do not feel comfortable socialising with them while sober and no denying that I have drunk. If I break any of these self-imposed rules I know I have a problem and will act accordingly. I might drink a couple of ciders in a field with my partner on a summer’s day, or share a bottle of wine every few months over some board games with friends, but recognising the addiction allowed me to get it under control.
Drugs, and why I started taking them
While I’ve spoken above about addiction to chemical substances that are generally not feared as addictive and are socially acceptable to dabble with, I’m now going to talk a little about my experiences with substances that are more traditionally perceived as addictive.
I have as an adult consumed MDMA, and while I unequivocally believe the experience was a net positive in my life, I have had to wrestle with questions of addiction regarding the drug. MDMA, typically taken as a recreational party drug, is illegal in many countries in the world, including my own. While its primary use recreationally is to flood the brain with feelgood chemicals and create feelings of increased openness and empathy, clinical trials in the US suggest that it activates many of the same areas of the brain that function in non-standard ways in individuals with autism. From a brief appraisal, it’s easy to see how a drug that induces feelings of positive empathy might be beneficial to individuals on the autism spectrum in a dry, abstract sense. For me, it was a world-changing experience, not just during the trip itself but for months afterwards. The biggest thing I immediately noticed upon reaching the high brought on by a recreational MDMA dose was an instant quieting of the world. For someone who has lived years with sensory overload issues, I found myself able to walk through a crowded room, tuning out the background noise and not feel overwhelmed. I could smell an orange without feeling dizzy, I could see a crowd as individual people not a chaotic mass of noise, I could eat foods with more than one texture, I could wear clothing with tags in the neck. I could mentally sort noises by importance and tune out the things I didn’t need to focus on. For the first time ever, I was able to experience what a quiet world is actually like. I was able to sit down and just enjoy the sound of a world at rest. This wasn’t a dulling of all my sensory inputs; it was an increased ability to tune out the static and focus on the important, and that was something I had never experienced before. It was turning down the static dial, but keeping the important information up full. While these aspects of respite from autism were strongest during the high from the drug, they persisted after the high had ended, allowing me to enjoy a few days of a world finally quiet. They gave me the quiet space to reflect on my mind, and to appreciate how much I have to push through in life. I was initially distressed by the realisation that I would have to go back to a world of sensory overload once the drug was out of my system. A friend got me to see that conversely, until then I’d lived my whole life not knowing I could ever get this kind of respite from sensory overload and other autistic spectrum symptoms. Rather than focus on it being sad the world would get loud again, I could be glad I now knew I could theoretically have moments of respite in the future.
Now, this all sounds like the setup to a tale of addiction: an illegal wonder chemical that seems like it can solve all your problems with no drawbacks is a recipe for habitual behaviour and addiction. However, there were a few aspects of the drug itself that allowed me to avoid getting into a cycle of self-destructive addictive behaviour with it. MDMA as a drug works by basically using up all of the brain’s stores of chemicals like serotonin at once, meaning that repeated habitual usage drastically diminishes the effectiveness of its results. It’s a drug that, if abused by repeated usage, will just stop being effective no matter how much of it you consume. This acted as a remarkably strong failsafe to dissuade making use of it to get through day to day. If you take MDMA let’s say three or four days back to back, by the final day you’ll find it’s creating far less of a high, with a far shorter duration, and a far faster drop off to sobriety. You can physically feel a tolerance building up over just a couple of days, and that in and of itself makes it very easy to see its lack of suitability for use as a day–to-day coping tool. On top of that, the drug causes massively dilated pupils, a sign of drug usage which is incredibly tough to hide. As a result, there were very clear signs that would make my usage obvious, and highlighted the need to be careful about when and how it was consumed. It’s not the kind of thing you can subtly consume a little of to ‘take the edge off’ a social situation, which makes it easier to avoid the alcohol mainstay of ‘just one drink before I go out so I’m socially relaxed’. Lastly, unlike stimming, alcohol, caffeine or obsessive organisation, MDMA’s effects didn’t vanish completely when the chemical had left my system. Changes made by taking the drug once stayed around long term, and provided long-term relief to some of my symptoms. I didn’t have to regularly take the drug in order to maintain many aspects of the relief it provided me. Many of the effects of taking MDMA in my 20s stuck around months and months, some even persisting to this day.
First, my willingness to open up about how I feel, as well as starting conversations in general with people, increased dramatically. I expected that during the high itself: a desire to talk to everyone and make everyone my new best friend. I did not expect a long-term increase in ability to communicate with others. I grew up, like many people with autism, somewhat locked in my own head. I went years refusing to open up to my own family in spite of their actively supportive nature, and tried to carry any issues in life on my own shoulders. I knew how overwhelming I found these problems, and I expected them to stress my family in the same way (they’re neurotypical, so probably not). I went well into my adulthood not being proactively communicative with those I grew up with, even when I actively needed help. In the long stretch of time since taking MDMA, I’ve found myself going out of my way to see how my family is doing. I’ve gone out of my way to start small-talk conversations with them, and not ones pre-planned with a flow chart. I’ve gone to my parents with things that worry me and asked for their advice, as adults I know I can trust and be open with. I’ve started really communicating with them in a meaningful way. I’ve started going out to social events in crowded venues, completely sober, and not being afraid to talk to new people. I now start conversations with people I barely know, and make long-term friends, something I never felt comfortable doing before. I’ve been able to shut out the mentally addictive pull of obsessively refreshing social media, which has freed up so much of my head in a given day. I can now eat foods with multiple textures, something I was never able to do before. I can eat pineapple, cucumber, allergic yellow peppers, celery, dried mango, grapes and a whole host of other foods that previously made me gag.
Lastly, I realised how thankful I am to be autistic, at least in one area of my life. I realised how terrifyingly quiet the world actually is as a result of taking MDMA, and how much of my willingness to be alone is thanks to living with autism. The world itself is quiet, and that quiet can be terrifying to experience alone. Me? I live in a world where there’s always low-level sound, senses blasted, a lot happening. When you live life in static, it’s hard to ever feel isolated and alone. I’ve enjoyed being able to get respite from autism when I have company to share that respite with. I would not want to be neurotypical when alone. It just seems so unbelievably lonely living in a world not filled with that static. It’s not a drug I would ever want to consume alone, because a world without the constant static of
autism is actually terribly isolating. It’s not a world I would feel compelled to live every day of my life in.
However, as much as I may have just spent a lot of words waffling on about how great MDMA is, I can’t deny I am addicted to it. I am a drug addict still, to this day, as a result of having taken MDMA. Sure, I’m not the scary kind of drug addict; I’m not taking increasingly large amounts of drugs and putting myself at risk of a fatal overdose, nor am I facing any financial hardships as a result of substance usage, but I am still a drug addict. I may not take MDMA on a daily basis, but I sure as hell think about doing so daily. Every day, at some point in the day, a small part of me thinks about taking MDMA. I can rationally tell myself it’s not a good idea, that I shouldn’t because I am at work, or it’ll be noticeable, or because taking it alone is a telltale sign of addiction, but the thought is there every day of my life, and it takes willpower to ignore. MDMA has made some positive long-term changes to my brain, and has made living with autism undeniably easier in my everyday life, but the sheer strength of its autism-relief properties when actually mid-high is incredibly powerful, and something tough to resist the allure of. Multiple times in my life, I’ve faced issues of substance addiction, as have many of my friends with autism. While many substances out there, both legal and not, are able to dampen the symptoms of autism, it’s easy to crave that period of relief, and that craving of relief can become addiction with relative ease. So many of the coping mechanisms available to autistic individuals are frowned upon by society, or take huge amounts of energy to maintain, and the idea of a quick fix so that you never have to deal with the day–to-day struggle of autism can be incredibly appealing.
In terms of lowering addiction rates in people with autism, we need to tackle the problem from several directions. I feel that stigmatisation of activities like stimming needs to be fought, so that non-chemical coping mechanisms are not something that people are afraid to explore. However, on top of that, we need to support proper research into autism’s symptoms, and medication options that can offer relief and respite to those who want it, without having to resort to inebriants. There are clearly chemicals out there that can affect a brain with autism, albeit with side effects, and until we find a treatment that can help calm those symptoms when needed, people are going to regularly turn to illegal or context-inappropriate, potentially addictive ways of self-medicating the days where their symptoms are just a bit too much to bear. Lastly, we need understanding and compassion for individuals with autism who struggle with issues of addiction. If people could look at people with autism who use substances like MDMA or alcohol to manage their symptoms from time to time, understand that they’re trying to find respite from a condition that never switches off and has no official treatment options and sympathise with the difficulty of that situation, it would make it easier to have honest conversations about the things that drive that addiction, and how to safely walk the line between occasional respite and life-impacting addiction.
I am lucky, in that I’m a drug addict whose addiction is under control. I think about illegal drugs on a daily basis, but I certainly do not act on that daily urge to consume class A drugs. I don’t use drugs alone, I don’t use drugs to a financially detrimental extent and I don’t use them in amounts that risk death by overdose. Still, I am an addict, and I can’t deny that fact. I’m someone living with a brain that’s never quiet, living with a condition with no official medication available to treat, and until we have a proper conversation about addiction rates in people with autism spectrum conditions, people like me will continue to live, trying to balance their addictions with the urge to find relief from an overwhelming lifelong medical condition.
1 www.ncbi.nlm.nih.gov/pmc/articles/PMC5222913
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Living through Transition and Diagnosis
CHAPTER 6
Transition, and Learning to Read Who I Wanted to Be
By the time I was in my early 20s, my life as Laura was starting to take proper shape. I was working full time under a female name, with female gender markers on my ID, and presenting as female in every area of my life. I was on hormones, I was speaking to a therapist, I was out to the world and I was starting to live a new life where I could be more direct and open about how I wanted to be perceived. The problem was, I kind of sucked at getting the world to read me as a woman. By the time I started medical transition, taking both hormone blockers to halt testosterone puberty worsening, and taking oestrogen to start feminising some aspects of myself, the bulk of first puberty’s damage had already been done. I had dark coarse facial hair growth on my face and neck, I had a ludicrously large Adam’s apple, my shoe size was too large for shopping in most women’s sections without cramming them into shoes several sizes too small for me and most of my bones were pretty much set for good: I had relatively broad shoulders, narrow hips, a slightly square face and was over six feet tall. These are all pretty common aspects of testosterone puberty, and none of these are things that can be altered without surgery once they’ve had time to happen in the first place. It’s an issue any trans woman who transitions after their first puberty has completed has to live with and learn to handle. When it comes to getting your penis inverted and crafted into a vagina, the NHS generally consider that a necessary treatment for trans women. At least when I was going through the NHS, pretty much everything else was considered an optional cosmetic procedure, and as a result not covered by NHS funding. If you wanted facial feminisation surgery to smooth out your face, or a tracheal shave to reduce Adam’s apple prominence, you needed to pay for those out of your own pocket, and they don’t come cheap. On top of this, things like facial hair growth and voice changes are not affected by hormones, at least for trans women. Getting on hormones doesn’t make your facial hair stop growing, nor does it reduce the depth of your voice. Testosterone is a pretty tricky hormone to deal with, as the changes it makes are more or less permanent and not open to later hormone alteration. Trans men can start taking testosterone and find that facial hair starts to grow and their body shape changes, but starting oestrogen won’t convince your body to un-deepen your voice or thin out that facial fuzz. You might get lucky like me and find hormone replacement therapy makes some of your body hair lighter and less noticeable, but that’s about it for undoing the changes made by testosterone puberty.
The bigger problem comes into play when you’re a trans woman who also suffers with autism, because a lot of the techniques other trans women use in order to present more femininely come with their own set of challenges that can make them inaccessible to women like myself.
My eternal battle with makeup
Let’s start with makeup, because it’s the bane of my personal existence. I undeniably look more feminine, and experience less anxiety and dysphoria over my appearance, when I wear well-applied makeup. I can use a good foundation to cover up my stubble and mask its appearance, I can use mascara and eyeliner to draw attention to my eyes and I can use lipstick to make my lips appear fuller. Contouring can help disguise the shape of my face, and I have a far lower rate of being misgendered when wearing well-applied makeup. There are however, two major problems when it comes to me wearing makeup: the texture on my skin and the difficulty applying it to my own face.
Let’s start with the texture issue. I frequently have to deal with touch-based oversensitivity, and unless I am having a rare day of relief from those symptoms, I tend to find that actually wearing makeup takes up a lot of my mental resources. All I want to do the whole time I am wearing makeup is wipe it off, wash it off, retouch it, perfect it, get it off, touch it to assure myself things are okay, not touch it to not get fixated on it and generally think far too much about the abnormal feeling that’s clinging to my face skin.
Then there’s actually applying makeup. Like many people on the autism spectrum, I suffer from a multitude of coordination issues. Apparently it’s because a key part of coordinating oneself relies on processing visual information accu
rately in order to process and predict where your body is, then accurately make small movements adjusting to that information. If you’ve got a brain that’s oversensitive to visual information – and as such consistently trying to process too much information – unsure of which bits to focus on and which to filter out, it’s going to affect your ability to accurately adjust to that information. In short, too much information in via the eyes means understanding how to make specific movements is harder. I struggle with both small-scale and large-scale motor control, meaning I am frequently clumsy as well as struggle to do detailed tasks like tying my shoes, holding small objects and applying makeup to my face. I don’t have the coordination to apply different levels of pressure when applying foundation, meaning I struggle to blend and soften the edges and end up with horribly visible lines around the edges of my face. I can’t apply eyeliner evenly, or without poking myself repeatedly in the eyes. I spent years when I first transitioned practising my makeup on a daily basis, but no matter how hard I tried, I just couldn’t make my hands do the subtle small movements I needed them to do.
Uncomfortable Labels Page 8