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thehiddenself · 1 year

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Autistic traits - a lived experience

Perfectionism - this has been the bane of my life; it works its way into every aspect of my day to day experience. I tie myself in knots trying to achieve ‘full potential’ (the 100% outcome) and to be the best at everything and anything I put my mind to. My attention to detail, whilst well suited to certain aspects of life and work, means that some things take twice as long as they might otherwise - like writing the perfect email or the perfect letter (so often a handwritten letter making it as far as the postbox must be the third or fourth iteration. Similarly, with work projects the intensity of effort put in from the start can easily lead to exhaustion and burnout… and the work therefore being left incomplete, unfinished, and calling for attention

Black and white thinking - a bedfellow of the perfectionism. All or nothing. This often means my instinct is to give people only one chance - if they mess up “it’s over”; this is particularly true with those closest to me, as I have invested a deeper level of trust in them. Woe betide anyone who does not treat this open-hearted trust with care. All of this despite my having studied psychology and the notion of ‘good enough’ and the 80/20 approach. If my husband and I have a serious argument then it’s clearly “the end of our marriage” - luckily so far he has managed to talk me around from this extreme! He says I only have two gears… neutral and 6 (in bed or 100 mph)

Taking things at face value - to the point of gullibility. The school bully would tell me I had to sit in the cold changing room corridor until she called me back into the common room or I would have to explain myself to the headmaster for disobeying an older pupil, so out I would go… with laughter emanating from the other side of the door. I have a high IQ, but I trust others implicitly and cannot fathom someone being ill-intentioned; I am easily manipulated and taken advantage of

Executive function challenges - I am intelligent and highly capable of many things I put my mind to, and I am definitely one to call in a crisis (hyperfocus is my superpower). But I cannot for the life of me keep my home organised and the past four decades are littered with ‘the unfinished’ - higher education courses, work projects, baby books for my children, family photograph albums. My master to do list has 221 items on it. Some have languished there for years (even though they require attention and completion). I have 20 different to do lists in a bid to prioritise: today, ASAP, home, work - and so on. Anything with a deadline is assigned a date and automatically appears on the today list as this date arrives; then it just depends how my executive functioning is that day. Some afternoons I’ll exclaim “I am BOSSING life!” (I talk out loud to myself - another autistic trait apparently), others I need to leave the to do lists and reconnect with nature instead

Non-gender conformity - my childhood was marked by Corgi cars and Lego; I loved Sylvanian Families too, but more for exploring psychology and the interplay of family dynamics than for their cuteness. Not for me anything pink or fluffy. I am much more at home in trousers than a dress (I tend to wear the same clothes for days on end, usually a variation of jeans and a jumper), and I like nothing more than geeking out on cars (their aesthetic as important as their performance) and ski equipment. Perhaps unsurprisingly, I drive fast and ski fast. I love fixing things around the house - my one successful contribution to domesticity!

Obsessive interests - for me this has been intense focus on the human experience. The study (over several decades) of anthropology, philosophy, psychology, psychoanalysis, psychotherapy, and neuroscience; also an obsession with medical research and finding the flaws in potential misdiagnosis or malpractice (including cardiology, neurology, psychiatry)

Mental health challenges - I have a history of eating disorders and low level anxiety. The former began at 11 (my arrival at secondary school) and ended at 30. Incidentally, this was when my husband and I embarked on our relationship and was the first time I had felt truly seen, understood, and supported. I am able to be myself with my husband in a way I have not experienced with anyone else (not even my close family); no need for the masking or camouflaging of my true self. However, neither of us knew the full extent of what this actually involved until I was in my 40s and the burden of life demands led to burnout

History of sexual assault (as an adult) - again, I have no doubt that this has to do with taking people at face value, trust and pure faith in the goodness of humans, and being naive to others’ intentions. This has not been helped by my fight or flight response, which turns out to be “freeze” in stressful situations. This has happened on several occasions, and the first experience did not integrate itself into my conscious effectively enough to act as a warning for future occurrences

Direct honesty to the point of bluntness - I am aware of the social expectation to pad brutal truth with niceties, but it depends how I’m feeling on any given day as to whether I am able to offer these platitudes alongside an honest opinion; telling a white lie to avoid hurting someone’s feelings does not come naturally to me, but I can understand the social construct around such lies. Lying feels like swimming against the current, I’d rather be living a straightforward life of full truth

Exhaustion after social interaction - whilst I enjoy spending time with friends, I much prefer these interactions on a one-to-one basis; or at the most perhaps four of us enjoying lunch together. Large gatherings tend to set me on edge even weeks before the day itself, not helped by prosopagnosia which means it is unlikely I will recognise people who know we have met before. I have learnt that it is easier to act as though one has met someone (and confuse a stranger with this) than to offer an acquaintance a hand by way of introduction (to which they then take umbrage). An exception to my social angst - a room packed full of strangers - is a party at which I can dance; I lose myself in the music and it brings sheer joy

Hypersensitivity (sensory processing issues) - I could not swallow lumpy food as a child, particularly if it was soft such as yogurt with fruit in it; the lumps had to be strained out or I would gag. Even the thought of rice pudding makes me anticipate the same sensation. Bright sunshine in my eyes makes me feel anxious and unwell, particularly in winter when the sun is low in the sky. Wrinkles in clothes; labels; certain fabrics; interruptive noise - the buzzing of a fly, the dripping of a tap, a radiator on full, the sound of chewing or swallowing, heavy breathing; there are many more - but all make me want to retreat (or run as fast as I can) to a quiet, darkened space!

Food - as a child I was referred to as being like a hamster; I would sit with food stored in my cheeks. I could not eat red meat and would be left at the table long after Sunday lunch had finished, with a cold slab of lamb or beef in front of me (I later learnt I lack the digestive enzyme for red meat, but I think it was also something about the texture as I could manage spaghetti bolognese and beef burgers. I lean towards crispy foods, and eating the same thing every day is quite usual for me. If left to my own devices I would subsist on a diet of cheese on gluten free crackers (I’m coeliac and have Hashimoto’s thyroiditis, so gluten is out)

Interoception - I can often reach the end of a day and realise I have forgotten to eat anything; it is highly likely that I will have forgotten to drink any water all day either. Even when I manage to eat, the drinking side of things seems to elude me. Due to chronic pain as a backdrop to my every day, I’m also seemingly unaware of certain pain signals (usually caused by acute injury). In the past this has meant continuing a sporting or daily activity with a fractured bone or torn ligaments until it is no longer possible to ignore the injury

Mimicry - perhaps harder to discern in a medical setting, but I will often wait for cues as to how to interact before mirroring the person I’m with; this will often result in my adopting their accent too, which I am fully aware of but can’t seem to curtail. I also often finish a movie and realise that I have assumed the characteristics of one of the fictional characters I have been watching; I need to sit still for 20 minutes to come back into my own space. The only “me” I trust as being truly myself is the one I find at home on a quiet weekend with just my husband, children and dog for company

Sleep issues - where do I begin?! I find it hard to transition from day to night; a natural night owl, I will stay up into the early hours regardless of what my body is trying to tell me (see interoception). I also have little sense of the passing of time; so I can put my children to bed and know that I should be in bed by 10pm or 11pm, but will find myself eventually climbing into bed at 2.30am with no real sense of where six hours have disappeared to. This means I am sleep deprived, often functioning on an average of only five hours sleep each night

A deep thinker and feeling ‘different’ - even when surrounded by loved ones, a sense of otherness prevailed throughout my childhood and into adulthood. I sought safe ground in the form of my journals, writing profusely day in and day out - words spilling onto the page; reams of thoughts on my theory of being. ‘Cogito ergo sum’ my anchor in a sea of uncertainty. Well-intentioned family would urge me to leave my journals and join them in conversation, but in those conversations I felt lost - as though I understood only half the language, grasping at the underlying meaning of it all. On a clear night I would often gaze up at the stars, tears streaming down my face; “I want to come home now, I want to come home” my sorrowful mantra. I had landed on the wrong planet; I was the same, but different

Time alone - no matter how much I love my family, I will always prefer to spend time alone. It is a basic need and how I recharge my batteries. In my mid-20s I was so overwhelmed by life that I booked a flight to Australia (I live in the UK) and moved around various rented beach cottages for a few months, spending day after day on my own, walking on the beach and playing my guitar. I found a small group of wonderful friends who, looking back, were almost certainly the same tribe as me. I would spend time with them, singing and dancing, then time alone - rinse and repeat; this worked for a while and I was genuinely the happiest I’ve ever been, but eventually I bought a 4x4 as an escape route ‘to drive the coast solo’

Emotional fluency - I found myself unable to engage with my emotions, and to understand what they were, until in my late 20s I embarked on an art therapy foundation course and ascertained that sorrow and sadness would pour forth when I listened to music or switched off my analytical brain and created some form of art. At the time I thought these modalities were the whole key and that I had finally discovered how to open the door to myself; the real me, my truth. Looking back with the perspective of hindsight I can see that this was only a glimpse through the keyhole

Social cues and nonverbal communication - to think about social cues brings back awkward memories of incredibly awkward moments. It is as though at birth most people were given an instruction manual for life and some of us missed out. I feel as though I have for the most part made it up as I go along, finding a way to navigate 21st century life with some level of effectiveness and success but often getting it very, very wrong; and then invariably spending far too much energy working out what I should have done differently and kicking myself for “not having known”. This extends to not having a very strong radar for facial expressions - I can see the obvious (rage, abject fear, grief etched on a face) but not the nuances

Inability to edit conversation - if I start talking about an experience, it is likely I will go into every possible detail (even when I try to check in and remind myself that this can bore people and to keep words to the bare minimum for the story being told). If I start talking about one of my favourite topics, good luck to the listener! I would like to think I provide them with fascinating facts they will feel enlightened by and which will prove life-changing for them; however, this rarely proves to be the case much to my bemusement. I find it really hard to understand that some subjects just aren’t as interesting to others as they are to me. Like the risks of anticholinergic medication in the elderly population and those with dementia. Or art therapy as one of the most effective modalities for being able to help children access their emotions. Or the genius of Leonardo Da Vinci. When I was 21, I attended a party and at the dinner sat next to someone who had requested this specific seating arrangement by the host… I figured this out and decided to dazzle him with how amazing Da Vinci was; at the end of the night he told me that it had been the most boring conversation he’d ever had)

Planning ahead - I drive my husband crazy (in general), but specifically because of my need to plan ahead, to manage my expectations of what will take place within the next hour or two; for example, “Ok when we get home I’ll do X, you do Y, and the children can do Z”. Whereas he just wants to… g o w i t h t h e f l o w! But he gets it. In an ideal world I would be appraised of the layout of any new building I need to visit (for work or other); another way to manage expectations and lessen the potential for anxiety. Literally “The main door is here, then you turn left, then you take the stairs, then you walk down the corridor…”

Stimming - these aren’t behaviours I’d ever really thought of as stimming, but in social situations (or the lead up to them) I will subconsciously pick my finger cuticles until one or more are bleeding; while driving long distances I bite at the inside of my lips, usually until they bleed; in moments of anxiety I find myself pacing and/or wringing my hands; I click my fingers repetitively; will always find something to fiddle with, usually a pen to twirl in my hand; repeat “Ok, ok, ok, ok” or “I can do this, I can do this, I can do this, I can do this”; one of my favourite ways to self-sooth is doodling

Selective mutism - at the age of 11, on starting secondary school, I lost my ability to speak to strangers. Which meant almost everyone I encountered on a daily basis. Looking back now I can see that I had gone into a deep state of shock. I stopped speaking and I stopped eating. I withdrew into a limited world of white/beige food (rice, bread, cheese) and silence. I folded my arms across my chest as a barrier. One girl I met recently reminded me of this - she had been in the sixth form when I arrived and remembered me for my huddled posture, crossed arms, and mutism. Only weeks before, I had excitedly asked my father to arrange saxophone and Italian lessons for me. The saxophone teacher turned out to have ulterior motives which sickened me to my core… another shock to the system. I was lost, cast adrift in a stormy sea on the darkest of nights, and I had no idea I could tell anyone. Any sense of self I had developed by then evaporated

Burnout - I look back now and can see the major moments of burnout; when I was in my mid-teens I left school with chronic fatigue and spent a great deal of time in bed; in my mid-20s I packed up and left for Australia for peace and quiet (I even changed my name when I arrived there, creating an entirely new persona); and 2022, approaching my mid-40s (which is what led me to embark on this particular journey). Interestingly, my mid-30s were a whole other level of exhausting, but at the time I had two tiny children depending on me not to drop any balls… somehow I pushed on through

Co-morbid ADHD traits - whilst my attention to detail is to the nth degree, there are times (not least in week four of my hormone cycle) when I make careless mistakes and chastise myself for these; I can be easily distracted - unless in hyperfocus mode on something of particular interest - and it can take me a while to settle back into full focus on what I was doing; I often fail to finish tasks as I forget about them (I describe this as jumping from lilypad to lilypad until the first few lilypads are a distant memory); I geek out on lists and systems, files and folders, creating order from chaos… however, unless a task is aligned with something I love or I’m excited about, I can be extremely disorganised; I will actively avoid things I don’t like doing (think tax return) until the absolute last minute - at which time it is like birthing a baby whale; I often lose things of significance - such as external drives with family photos, my wallet, phone, car keys, house keys

A few other things…

Synesthesia - I have sequence-space synesthesia (see my separate post; I envision the year laid out as an oval with the months at various points, and as time moves forwards I move along the oval)

Flat tone of voice - I have a monotone speaking voice, but I can sing with perfect pitch (and play pieces of music by ear having heard them briefly)

Numbers - I’m fascinated by numbers and patterns; I remember phone numbers, registration numbers, driving license numbers, credit card numbers, post codes, and birthdays with ease

Order - I love lists and plans and spreadsheets, and will spend hours working on data analyses

To be continued…

#women with autism #autism #autism awareness #actually autistic

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