So many of my friends would have already guessed it by all the stuff I’ve been sharing lately but I’m going to just come out officially and say that I am autistic. No, not instead of ADHD, many people have both; in fact, there is a great deal of overlap which makes me feel if our understanding of neurodiversity is really very rudimentary currently and how we label these things may change a lot over time. But as it is, ADHD and especially autism are the labels that are proving immensely helpful to me right now and I want to talk a little bit about why. Please remember that I am only speaking about my personal and subjective experiences and my personal understandings of what I have been learning about ADHD and autism, everyone is different, the only person I am an expert on is myself.
First off, I need people to know that learning I am autistic is not bad news, in fact it is wonderful! All my life, I have had invisible and internal struggles that make life hard in ways that I’ve not known how to explain or express and have mostly kept hidden out of shame and a desperate desire to be “good”. In my endless search for answers about why I struggle in ways it felt nobody else did, I’ve had 7 psychologists (number 7, my current one, is a new one who specialises in neurodiversity) I’ve been to multiple psychiatrists, I’ve read a great deal on multiple mental health conditions (in particular, bipolar which runs on one side of the family) I’ve worked so damn hard through modalities such as CBT, DBT and schema therapy where I spent four years deep diving into my childhood with a very intelligent clinical psychologist and while all those experiences have helped me gain a deeper self-awareness and fascinating insights into the human mind, ultimately I have come up short when trying to figure out why the hell I struggle so much on a daily basis. Then I learned about ADHD and for awhile, a lot of things were falling into place. I was discovering community and strategies for self-management that were actually helping, my daily life was starting to become less of a struggle. Learning about ADHD has absolutely changed my life for the better because it has been like discovering a manual for the operating system that is my brain and getting an official diagnosis at the end of last year so I’ve been able to try the medications has definitely made my day to day life easier. But it has still felt as if there was a puzzle piece missing.
Over the years, as female identified friends of mine have learned that they are autistic, a few have approached me, wondering if I might also have it. I was curious but resistant as when I researched it originally, I did not find myself relating to a lot of the diagnostic criteria, nor cultural stereotypes about what autism looks like. What I did not understand, however, is that historically, most of the research has been done on white male boys but that autism looks very different in girls and women (as well as people from different bakcgrounds) as we are raised differently and subjected to different social pressures. Internally, there may be a similar experience but culture and nurture also dramatically influence who we are and how we behave. In particular, girls, from a much earlier age, are pressured to think about others, to not be “bossy”, “know it alls”, “selfish” or “grumpy” and the pressure on girls to be “nice” and “polite” is particularly strong so that girls learn to mask more and therefore their autism goes undiagnosed or misdiagnosed as anxiety, depression, BPD, bipolar and so on. This is not to say that autistic boys do not mask but the intersections of race, class, sex and so on are complex so I’m using simplified (and gendered) language in order to speak to my own experience and to try explain how autism presents differently in different people and that the more masked you are, the more your autism is hidden.
What is masking? Masking, for me, is the act of studying people and how they behave and interact and copying them in order to camouflage as “normal”.
We all mask to a degree but when I am out in a social situation, I feel as if I am an alien puppeteering a human body. I mask when I tell myself the correct times to smile, to laugh, to make a sympathetic face, to adopt a casual and relaxed body language when in fact, what would actually make me feel relaxed is to go into a corner of a room to stare at a leaf while humming to myself.
I mask when I tell myself not to grimace and clench at the loud sounds that make my body hurt (brooms across concrete floors, vacuum cleaners, traffic, clanging cutlery at restaurants, whirring fans.) I mask when I pretend to be fine and not revolted when I bite into a piece of food at a restaurant and the texture is so “wrong” that I feel like I might puke.
I mask when I make eye contact. When I was a teenager, some girls told me they had all decided I was “untrustworthy” because I didn’t make eye contact, so I’ve learned to look people in the eye while I talk to them, even as it makes my entire body stiffen in discomfort in much the same way that bright, cold coloured florescent lights do and I need to be clear, this is not shyness on my part, eye contact being painful/overwhelming is a common autistic trait. To this day, if I really need to focus on what I’m saying, I need to look away from a person so that I can think clearly. That said, sometimes I enjoy eye contact if engaged in an exciting and engaging conversation, it’s just that I find eye-contact incredibly intense.
I mask by being hypervigilant of my conversations and the correct “tone” to take, lest I be misinterpreted as self-involved, inappropriate overly enthusiastic or the wrong sort of weird. I mask by not asking “why” all the time, because people think I’m being contrary or combative when actually it’s a question my brain never stops asking. I mask by holding back most of what my brain thinks to say because so often the way I see the world, or the things that seem reasonable to talk about to me, are unhinged, inappropriate or shocking to others. I have often been told I am self-righteous and contrary and when something excites me, I can come across as too intense, too loud. A common message I have received is that I am too much.
I mask when I am forever holding back on “stimming” behaviours in public. Have you ever seen someone with autism rocking back and forth? Or humming? Or saying the same word over and over? Listening to the same song on repeat? Clenching their hands open and closed? Tapping? Clearing their throat? Stimming is a repetitive self-soothing and nervous system regulation behaviour that is incredibly helpful to autistic people in helping to keep us more calm but because we are often trained by strict social rules not to be “weird”, we can train ourselves out of these behaviours but the result is that we become more stressed and more prone to meltdowns and burnout. When I am home by myself, I spend a lot of time making odd noises over and over, or jiggling, or saying weird words out loud because it just feels good to and relaxes me.
I mask by hiding my hyper-empathy. There are jokes made a lot online about people who call themselves “empaths” but it is a known fact that many autistic people report struggle with unusually high levels of empathy. It is important to note that this empathy tends to be “affective empathy” which is a felt, bodily sort of empathy related to mirror neuron responses (which I strongly suspect is also related to the fact that one of the defining traits of autism tends to often be a hypersensitive nervous system) as opposed to “cognitive empathy” which is a more intellectual understanding of how other people might be feeling based on your knowledge of what’s going on for them. My affective empathy is high in the sense that when I am around other people, their body language and mood has such a dramatic effect on me that in can be hard for me to go into a more rational and cognitive understanding of what is going on.
The truth is, noisy places overwhelm me and crowds of people send me into sensory overwhelm. Over the years, this has been misinterpreted as me being “shy” or “social anxiety” but if you’ve ever seen me on a dance floor or running around butt naked at a party, you will quickly realise that I am not shy and yes I have social anxiety but it’s not quite for the reasons you might think. It’s because a lot of how people think, what they say, what they do… it’s confusing and unpredictable and alien to me and over the years, many of my peers have made sure to tell me that I am confusing and alien to them. One stereotype you might be aware of autistic people having is being obsessed with a certain topic which gets called a “special interest” (eg trains) well with girls those special interests tend to often be socially acceptable things such as ponies, animals and people. I’ve had a lifelong fascination with animals and when I realised that humans were another animal that could be studied and analysed, humans became a special interest and I am a bit of a nerd for psychology. The special interest that has gotten me in bucket loads of social trouble over the years, however, has been sex. I’m fascinated by human sexuality, I can’t stop talking about it, but some of the most painful messages I have received from loved ones over the years for this is that there is something “wrong” with this and that I should feel “shame” except that I don’t. Not in that way, at least.
But here’s another thing I’ve masked about for far too long in my life… one of the reasons that I have been fascinated by sexuality for some long is because of my own proclivity towards BDSM. Now, I’ve never made any secret about that proclivity but I’ve not publicly discussed why before: I have hyposensitivity. This is also known as sensory-underesponsivity and for me it means that gentle and soft touch feels like someone is scraping the back of my throat or lightly burning my skin, this caused me a lot of distress in the early years of my sexual history but unfortunately I masked for a long time as I thought I was “supposed” to enjoy a certain sort of touch. BDSM helped me find a language for how my body processes heavy thuds and particular types of pain differently and I believe it is no coincidence that there are a lot of autistic people in the kink community (this is not to say that all autistic people are into kink nor that all kinky people are autistic. The only experience that I am an authority on is my own.)
It’s not only crowds of people that overwhelm me, however. Even one on one interactions actually take a lot of bandwidth from me so that I need a lot of down time. In fact, I tend to need a lot of time around every single thing that I do. There are a lot of daily activities that I find exhausting and difficult; driving, shopping in the supermarket, preparing food, writing emails… I know nobody really enjoys those things but for me I can very quickly and easily feel overwhelmed and the truth is that for much of my adult life, I have relied on a lot of support from my partner, Wes. Like, a lot. Financial and otherwise. For a long time it’s been an immense source of shame and pain for me when I will call Wes, most every day, in a panic because filling in a simple form is confusing to me, or I need him to buy something online for me because I can’t think that day, or asking him to make a phone call on my behalf because talking on the phone is hard and stressful and the audio quality of phonecalls sometimes put me into fight or flight mode.
The truth is… the suicide rate for autistic people is high, really high and suicidal ideation is something I have battled for a very long time due to many things but a primary one being feeling overwhelmed by life and hating myself for always feeling so overwhelmed. Another common problem for autistic people is self-harm and this has absolutely been the case for me. The reason for it is not self-loathing, as you might think, but in fact an attempt to regulate a freaked out, overstimulated nervous system through acts such as punching oneself in the head, cutting, etc. During times when I have felt utterly overwhelmed, terrified and panicked, the act of causing pain to my body has released chemicals that calmed me and in fact, a couple of times, probably saved me from far greater harm. Now I am learning about stimming, shaking and various techniques to regulate and soothe my highly sensitive, neurodivergent nervous system, I am learning techniques to self-soothe, emotionally regulate and prevent the meltdown modes that have, historically, had me breaking things, kicking walls, screaming or hiding away and hurting myself.
Learning about how autism informs the lived experiences of girls and women in particular has really helped me to finally come to terms with who I am and how I work. Being a 37 year old woman who still has the same sort of meltdowns she had at 10 years old has been a deep source of shame and despair for me but the more I embrace my neurodivergence by letting go of the things I will never be good at, diving deeper into the things I love with less shame and learning the tools I need to cope, I’m seeing a dramatic improvement. I’ve started, for example, to accept that though I adore people, I will never be a social butterfly. I have deep and intense connections with people and counter to the stereotypes around autism, I have many wonderful friends but I also need a lot more time to myself than a lot of people seem to and that is ok. I do get lonely but I’ve realised for me the cure to loneliness is often working on shared projects, doing workshops together, shared activities because pure socialising for the sake of socialising, while lovely, drains my battery and group dynamics are overwhelming. Pursuing my interests and loves is what fulfils me most and I am in a blissfully happy place when I can pursue them alongside people. I adore parties but I can’t deal with parties where everyone sits and talks for long (unless we all happen to be discussing how nature is queer and clown is connected to shamanism oh and that reminds me of this science fiction I read and so on) I need things to do with my hands, I need to dance or paint or sing or move.
Some people are resistant to labels and I do think labels can be dangerous as when we see a label, we can take shortcuts in our mind and become blind to the complexity in front of us. But as a queer woman, I’ve known for a long time how helpful labels can be in finding our tribes and so at this point in my life, “autism” is a label that has guided me towards people who speak of experiences that deeply and profoundly resonate with my own and for that I am grateful. “Autism” is also a term that is weaponised and used as an excuse to demonise, pathologise, infantilise, sterilise and patronise humans and so I’ve taken my time about stepping out and applying this label to myself, least it lead to stigma, prejudice and other negative outcomes for me but when other people have spoken their truth, it has saved my life many a time and as a queer woman, I know the mental health benefits of being out and living as authentic a life as possible, despite the risks and costs, so in this moment in time, this is my truth.
I am autistic.
It is a relief to finally start accepting and understanding myself and in this moment, I feel more peaceful with myself than I ever have been. I feel proud of myself, what a fucking cool person I am so have kept myself together in a brutal late stage capitalist world that punishes difference. I am learning not to feel shame for having needs that are different to other people and perhaps the fact that I struggle with “normal” things is the price that I pay for seeing colours more intensely than most, for never struggling to be creative due to having an endless supply of ideas, for having a brain that goes to the most unusual of places and to get to live a life that isn’t based on a template or mould and instead is one based on the strange callings that I feel inside myself, the queerness of the universe expressing itself in my brain that is different. Not better, not worse, simply different.
I feels good to write this. It’s long winded, intense and full of far more detail than perhaps anyone cares to read but that’s… kinda part of being autistic too! It feels good to let myself be this way. It feels good to give myself permission, at least, to truly start being me.
Resources on Autism I’ve Enjoyed:
(Please note that I am no expert but one thing I tend to prefer is to refer to resources on autism that are written by, or consult with, actually autistic people as historically, a lot of research and ideas of autism have been ableist and harmful.)
Websites:
Neuroqueer – Writings by Dr Nick Walker, a transgender, autistic writer who I have been deeply influenced by. Their essay “Throw Away The Master’s Tools: Liberating Ourselves From The Pathology Paradigm” has had a profound influence on the neurodiversity movement and if I could make everyone read one article about neurodiversity, it might be this one.
Embrace Autism – A great online resource compiled by two researchers with autism. I really like this website.
NeuroClastic – A website dedicated to publishing mostly autistic voices as well as occasional allies. This website is hit and miss for me but what it has really shown me is that autism can present in a variety of ways in a variety of people.
Books:
Drama Queen: One Autistic Woman and a Life of Unhelpful Labels by Sara Gibbs. Reading this book felt so familiar to me, though her life was very different to mine, I saw echoes of myself in Sara Gibbs in so many different ways. This book had me laughing and crying along in recognition and I adore it.
Divergent Mind: Thriving in a World That Wasn’t Designed for You by Jenara Nerenberg. “A paradigm-shifting study of neurodivergent women-those with ADHD, autism, synesthesia, high sensitivity, and sensory processing disorder-exploring why these traits are overlooked in women and how society benefits from allowing their unique strengths to flourish.” I found this book to be an easy and empowering read that left me feeling like there were ways I could make my own life more comfortable and happy. My only gripe is that this book is written from a bit of a place of privilege but the author herself acknowledges this.
Unmasking Autism: The Power of Embracing Our Hidden Neurodiversity by Dr Devon Price I haven’t yet finished this book but I’ve been a fan of Devon Price’s work for a while now. Within this book are multiple personal accounts of the devastating effects that masking has on the mental health of autistic people, the pressure to conform is literally killing us and so this book is, so far, a powerful and galvanising call to unmask.
Resources on ADHD:
How to ADHD. Fun, informative little ADHD-friendly sized videos explaining currently viewpoints and understandings on ADHD and offering different suggestions and ideas for managing it.
ADDitude A peer reviewed online publication on ADHD. I find it to be hit and miss with quality and sometimes I think it can be a little too uncritical and unscientific of the information it shares, but it’s a helpful database for basic and clearly communicated information. That said, I am becoming increasingly sceptical of the information presented on it.
Sluggish. This is a recent discovery but I am really enjoying their work that is critical and thoughtful about the current surge of ADHD treatment that can feel a little bit like… woke TikTok capitalism. I am not certain of my own perspective but I appreciate their scepticism and questions as they are questions I myself am asking such as in this essay: Would you still have ADHD without capitalism?
Scattered Minds: The Origins and Healing of ADHD I found this book and Gabor Mate’s perspective on ADHD to be fascinating in that they question the current medical paradigms around the causes of ADHD and take into consideration the modern day problems of parents being overstressed and disconnected (without blaming the parents) and how this would affect early development. Though I think Gabor’s perspective sometimes goes a bit too far in the other direction and I am sceptical of the anti medication approach, it is a helpful and thought-provoking balm to the one-dimensional insistence that ADHD is purely down to genetic differences and asks important questions about the world we are living in.
My Neurodivergent Traits
Because I like collecting and categorising things, I’m attempting to create a somewhat comprehensive picture of my different traits. This will probably be updated and change as my understandings evolve.
ADHD
– Impatience
– Time blindness
– Novelty seeking
– Executive function issues
– Emotional regulation issues (quick to feel and react to emotions)
– Trouble regulating attention so easily overwhelmed, especially when not medicated
– Can hyperfocus when I’m doing something I love but every other thing in life is really damn hard
– Constantly losing things
– Poor working memory
– Out of the box creative thinking
– Struggles with emotional regulation
– I have been on vyvanse, an ADHD medication, for seven months and feel it to be positive
– Racing thoughts, can often feel as if I am having multiple thoughts at the same time
– Bad handwriting and I can find talking out loud hard as my thoughts go way faster than my mouth and hands. Find it easiest to express myself in typing on the computer as I can compile my thoughts and get them in order while getting (somewhat) less sidetracked.
Dyscalculia
– Trouble doing mental math
– Frequently late
– Finds it difficult to remember names
– Needs to write down a phone number immediately to remember it
– Struggles to keep score in games; often loses track of whose turn it is
– Slow to tell time on an analog clock
– Poor memory for anything number-related, like dates or facts
– Struggles to learn dance steps or anything involving motor sequencing (HA! YES! You have no idea how many dance classes I’ve attended over the years. I fell in love with Butoh because it’s the only dance classes I’ve attended where I didn’t have to follow and copy any choreography)
– Gets anxious at the thought of having to do math unexpectedly at work (retail was HELL!)
– Trouble handling money or keeping track of finances
– Trouble understanding graphs or charts
– Finds it hard to understand spoken math equations, even very simple ones
– Skips numbers or transposes them when reading a long list or spreadsheet
– Finds it difficult to use Excel formulas
– Uses fingers to count or marks pages with tally marks to keep track of numbers
– Often gets several different answers to the same math problem; needs to check work over and over again
– Unable to remember math rules or times tables
Autism
– Dyspraxia. Poor eye and hand coordination, clumsiness, unusual way of speaking, struggles with using scissors and stuff for fine motor skills type stuff (great at painting, god awful at finicky crafts and abysmal handwriting!). Unusual ways of crawling when young, weird ways of sitting, balance issues and clumsiness (bike riding was/is hard!) clumsy and often bumping into/dropping things. Unusual and often arrhythmic ways of dancing. Difficulty following verbal instructions.
– Poor body awareness in general (thought improving through studying clown and Butoh)
– Sensory overload. Struggle to block out sounds and other things around me so I am easily overwhelmed which can quickly cause executive dysfunction, overload and ultimately meltdown.
– Meltdown which involves yelling, shaking, self-harm and repeated behaviours like rocking back and forth. Caused by overload from sensory input but also overwhelm due to other data input such as too much happening at once, too much information given to me too quickly, too many things to think about and hold in my mind at the same time and unexpected change to plans or the way I do things. This can lead to an immobile state known as shutdown where I then need to go into hiding to rest, a dark room under heavy blankets, avoiding my phone, emails, messages. Shutdown is needed for rest but can turn into depression if not managed well, especially if I feel shame for these feelings.
– Unusually high affective empathy but low cognitive empathy makes me deeply affected by the emotions of others yet often bad at understanding what they might actually be feeling leading to feeling distressed and confused in social situations.
– Social struggles due to feeling confused and on different wavelength to a lot of people. I do have a lot of social connections due to finding myself easily connecting with people who do not fit into mainstream society.
– Excessive daydreaming. Not a bad thing to have a creative mind but it can become maladaptive and escapist.
– Heightened sensory perception in vision: detail orientated, noticing small details others tend not to, heightened colour perception. Tunnel vision and myopia.
– Hyposensitivity (the opposite of hypersensitivity) to touch, processing light touch as feeling unpleasant and distressing. Firm touch is soothing (weighted blankets, tight hugs, hard thuds and freakishly firm massages! Yes!) – Super sensitive to textures of food. Was very fussy as a child and I often, on low executive function days, still gravitate towards plain, bland, simple and same foods.
– Good lateral thinking skills and creative problem solving if in special interest subject.
– Unusual sense of humour.
– Hyperfocus on special interests. Can paint all day. Will talk you ear off about theories on sexuality, psychology, clown and butoh.
– Hyper-systemising, my brain is always sorting different things into different filing systems and compartments but it’s pretty jumbled and complicated with arrows pointing back and forth and none of the drawers to the compartments ever seem to be closed.
– Sleep problems since childhood including sleepwalking and talking
– Echolalia. Repeating words over and over in my head and out loud.
– Stimming.
– OCD. Not keen to go into details about this one, for some reason it’s one of the few things I’m private about.
– Tendency towards “oversharing” and truthfulness due to either not understanding or respecting social norms. Have tended to be too trusting of people as it took me a long time to understand that people have hidden agendas.
– Struggles to make eye contact as it is painful.
– Social scripting, studying how people interact and planning how I will behave and what I will say in social situations.
– A hyper focused obsession with autism and realising I actually have tonnes of friends with autism!