NOTE: Those comments I make using [ ] represent elements relating directly to ASD.
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I am 32-years-of-age.
I am working toward a PhD in social psychology.
I have a younger sister, who has my little niece, who’s far too smart for a five-year-old.
My Gramps is a lovely man who brought me and my sister up since I was two-years-old: such a good man [accepts me for who I am, I think he might be on the spectrum].
I am autistic
– arguably I have Asperger’s, which is a disputed diagnosis, or outdated term –
I am on the autistic spectrum.
Actually, I’m on the waiting list for a diagnosis…at 32, hence the anonymous entry(ies): I feel it’s not appropriate to say I have autism until diagnosed as such [this is a part of my need for logic and correctness].
Yet, I’m writing this because I need to.
The lady who talked to me about getting on the waiting list said she’d be very surprised if I didn’t get the diagnosis – although it will surprise and confuse a lot of people who don’t know me well, and explain EVERYTHING about my behaviour for those who do know me.
I am a woman.
I wear make-up [meticulously].
At the moment I wear 1940’s-style dresses – sometimes with biker boots (weather-dependent) [‘at the moment’ due to mimicking, and camouflaging – terms I’ve learnt that explain my continuous change in style].
I’m slim. I’m told I’m pretty, petite, doll-like, some say beautiful – this description belies the air of confidence I apparently exude [an issue that means people don’t approach me – I’m ‘stand-offish’, ‘intimidating’, ‘stuck-up-looking’ –this is said once people get to know me and become my friend!].
I practice yoga, cycle, attempt to play squash with my hunky, 6 ft 3 inch boyfriend L (who was diagnosed with Asperger’s and Attention Deficit Disorder in his mid-thirties).
I didn’t think I could be autistic – my behaviour is not similar to his.
So why did I seek a diagnosis? – It wasn’t because of my partner.
An interlude: For one reason or another [maybe discussed in another blog] I studied psychology at undergraduate, and now postgraduate, level. I learnt about ‘abnormal’ psychology: what I would later (but before thinking that I am autistic) come to call neuro-divergent experiences (after reading Susanne Antonetta’s A Mind Apart: Travels in a Neurodiverse World).
I learnt about ‘male’ child autism: the lack of eye contact, locked in their own world, an ‘inability’ to understand others (the theory of mind ability ‘neuro-typical’ children develop), lacking in empathy and so on [cognitive empathy perhaps, emotional empathy autistics can have in abundance].
I didn’t hear, read, or consequently learn about female autism – these women were/are rare – they don’t exist.
It seems, however, that in the last year all I’ve seen in blogs, videos, articles etc. is the autistic woman.
I couldn’t tell you exactly why I started writing a list, but I started thinking that these women’s experiences were so inherently similar to my own that I began making notes on my own experiences.
I’m still compiling this list. Whenever a behaviour I’ve done for-evvvver seems salient, I write it down, I think about how it affects my interactions with others, how it affects me. After a few entries I did the two main online ASD assessments – Autism Spectrum Quotient (AQ) and the longer Rdos Aspie Quiz. But, being the logical person I am, or having done psychological experiments over the years, I needed people to compare my scores with – maybe everyone scores as autistic on these things?
Enter my ex and friend A and my BFF K stage left (I already knew what my partner L’s scores would be – and at this point I hadn’t told him I was considering that I was autistic myself: what if I was not?).
I scored high…on both tests…even though the ambiguity of some questions meant I left them out (what did they mean by ‘Do you notice patterns in things all the time?’ – did they mean numbers? Carpet threads? – I make connections between disparate psychological theories, does that count?). My ex and BFF scored as neuro-typical – oh.
Stage right: the GP. I was emotional, I was struggling with other things in my life at this point – my PhD, my Gramps diagnosed with terminal cancer, my relationship with L was difficult at this point, I was still learning how to be with him – and now the very real possibility that I was autistic.
This in itself did and does not upset me. The having to re-evaluate my whole bloody life does. It was and is exhausting, when most things for me already are. I was reading an unofficial female autism checklist in the waiting room, trying not to cry with relief at finding something that explained my ‘oddness’, my ‘weirdness’. It was a relief to understand [although I have more questions than answers right now], to feel a fit.
So, what do I do that makes me autistic?
Eye contact: I don’t make it. Simple. I still can’t tell you why I don’t, or why it makes me so unbelievably self-conscious, uncomfortable, awkward and downright invaded. I learnt to look at the bridge of the nose, the nose itself, the mouth, that interesting lopsided grin this particular person has [“don’t comment, don’t comment, don’t comment” – I commented]. I’ve done this a long time.
I have to know: I have an overwhelming need to know myself and understand everything. I explained away my inability to look people in the eye on an abusive boyfriend I had when I was seventeen. He was jealous. Of everyone. He also smoked weed – a lot (I have never done drugs, I have never been a smoker – it’s wrong, it messes people up, it’s illogical). I lost friends, he would be angry if I smiled and said thankyou when served food by a guy in a fast-food restaurant. This was why I didn’t look people in the eye! Except it’s not. I always did this. I still do this having broken-up with him thirteen years ago!
How does the boiler work? Then I can fix it. How does the human brain and behaviour work? Then I can work people out, make sense of things, make things better for those who struggle. How does my Gramps’ cancer manifest? Then I can figure out what is happening to him, I can sit with him and explain it simply, so that he doesn’t have to go through it alone.
I need you to know: I find it interesting, so you need to know it. It’s the truth, it’s a fact, it’s observable: you will hear about it. K’s male friend called me (playfully, apparently – this needs to be explicit, I’ll think you mean it) that I’m a bitch because one time I told him he was really sweaty. I tried to explain it was just a statement – I wasn’t judging him. That guy with the lopsided grin? He spent his whole life not knowing about it – go figure? Start talking about mental health, about a theory in psychology? I will tell you all I know and you won’t get a word in…plus, you’re probably wrong. Don’t feel bad, this is all I have, all I do.
Small talk: I can’t do it. I would rather you didn’t talk to me, I would rather sit awkwardly by myself in a crowded bar than try desperately to think of something to say. My mind is racing and blank at the same time. I am happy to sit and observe you: “look how happy that person is/I like that persons dress-sense/I feel for that person sitting alone…I should go see if they’re OK”. And please don’t tell me how pretty I am, how you like my dress, my hair…I don’t know how to feel about it, what to do with this. I’ll say thank you and wish the ground would swallow me.
Big talk: But, start talking about ‘big’ things, the important things, the things that interest me and I won’t shut up.
All the feels: I feel emotion. I feel everything. I am good at observing and seeing patterns in behaviour. But it means I understand how it must feel, and it hurts, it lights me up [dog butts! L could explain that one], it brings me down with you when I have a pretty good idea that you’re struggling with something. It annoyed L in the beginning, or he thought I was a mind-reader. The slightest move, the way of pecking me a kiss instead of a proper snog and I knew he wanted to get up, that he was thinking about cats, that the little peck meant the end of what we were doing and he’s on to something else now – all before he did those things. I guess my main problem is not understanding other people necessarily, but other people’s seeming inability to understand me. At all. I am constantly misinterpreted, told I’m stand-offish and unapproachable. When I care so much about people, why is this what people see time and time again?
I shut down. When my dad died suddenly I was 23. I shut down. I wrote lists. I, and I alone organised his funeral, his flat to be cleaned, to be emptied. My sister knew I was upset. My dad’s family didn’t. My sister told me that my aunt thought I was heartless, uncaring, because I wasn’t crying. They didn’t know how I was struggling, how I still do. The most important person in my life, my Gramps, is dying. I’m shut down. I rationalise and make all aspects of his health logical. I make lists about what the nurse says about his palliative care.
When people are yelling, or aggressive, I get scared. Even when I know it’s not directed at me. L is a big gamer. Sometimes he loses. Those times he swears, shouts, bangs his phone, his PC, crashes about the room (he’s a gentle giant – but this is how my brain interprets his behaviour). I feel petrified. It’s not directed at me. I know that.
Literally literal: I am a bad liar. I don’t do it, hardly ever. I am honest to the point it becomes a problem (remember the sweaty friend?). This makes for a gullible woman…I once rode the train to London, got on some tube trains and walked some way to an ‘audition’ for a dance video because a guy in a club said I was a great dancer and should come see him (I was 19, intelligent, but gullible). And Tinder? A bad experience for naive Aspie women…
“Not touching, can’t get mad, not touching, can’t get mad” (Chandler from ‘Friends’ reference): “Please don’t go to hug me, please, please, please?” What is with the last decade in the UK? Why are people I barely know trying to hug me? The only person I am comfortable hugging, with whom I actively seek it out, is my partner. I don’t even hug my best friend. Why would I hug you, Stranger? My lovely supervisor hugged me after she’d been away – I stood there like a statue, kind of rigid and patting her back.
The BFF: I have one, for twenty-plus years. This is apparently common for female Aspies. Just the one mind you. Too exhausting to have more, to keep up with more. I am fiercely loyal, I joke that she isn’t allowed other friends. She is, but one’s I choose, who I have managed, over months, to make friends with – and then I want them all to get along. I am the most ‘myself’ with K, I imagine. I still have to remind myself to stop talking and ask about her. It’s not that I am not interested, I genuinely am interested in her life. I just get carried away and forget to take turns sometimes. A guy she dated for a while, before I considered a diagnosis, said after one hour of meeting me that I’m like a ‘female lesbian Sheldon’ from The Big Bang Theory (I had a pixie haircut at the time and he was an idiot). Others could ‘see’ it, when I couldn’t.
Repetition and child-like: I like that voice you put on; that impression of a film character; that particular face you pull – so do it again…and again…and again…and months later, again. It doesn’t get old, it still makes me smile inside. I do the same. I repeat things I enjoy. I meow songs (drove A mad); I tell the same ‘don’t eat yellow snow’ joke every time I’m in a restaurant and we’re talking about leaving a tip. I have to say ‘I’m so funny’ to make it clear that I’m being funny.
Rituals of makeup application; when nervous I do a pattern with my fingers and nails; I write examples in threes – always (this is a good example!).
Lists. I love a good list. I rewrite lists. I have nightmares that I’m about to go on a plane on holiday and haven’t packed yet. I write packing lists.
I have a ‘squeaky’ voice. I talk fast, especially when nervous. I seem at least ten years younger than I am. Every. Single. Person who meets me and finds out I am thirty-two thought I was in my early twenties. It means I am often underestimated. I underestimate myself, I am full of self-doubt. This frustrates L, and it’s apparently the only thing, other than not drinking tea or coffee, which makes me weird, because he thinks I’m awesome – he’s also biased.
Noises: Especially at night, can be too much. I don’t think they hurt my brain the way they do L, it’s more I am so aware of them to distraction: I can’t do anything except hear that noise. I wear earplugs to bed. As a teenager I shared my room with my sister. Her normal breathing kept me awake. She would end up with all my [meticulously ordered by size] toys, and eventually my pillows, piled up on her where I’d thrown them at her. When I work I listen to music on low using noise-isolating earphones. L finds crowds and noise far worse than I do, it definitely effects me, but not to the same extent, but I’ve taken to carrying L‘s headphone splitter with me so we can share music and space together.
Smells: Again, to distraction. A had such weird-smelling feet, sweet almost, it bothered me. I hate doing the food bin, it makes me gag. Smells I like, such as specific people, are lovely, and make me happy.
Touch: I cut the labels out of my clothes. I notice clothes, constantly. If they’re tight, scratchy, sweaty. Some velvet-type fabrics make me produce an involuntary, almost turkey gobble-like, noise (L finds this hilarious, and has worked out I do it when he rubs my skin for too long). I rarely wear jewellery, and if I do I fiddle with it constantly, and in patterns.
Sight: Again, more a problem at night. The lights of other cars are distracting, oft-times almost blinding. Light can keep me awake. As a teenager I had to have complete black-out curtains. The red light of my digital clock added to my insomnia.
Taste: Like L, I don’t enjoy or cope well with hot spicy foods (although I like some black pepper, unlike L). Textures of foods can be problematic. Bananas are extremely squidgy and gross. I put salad cream on nearly everything bar ice-cream. I have a little stash of it in a cupboard. I never drink tea or coffee, I don’t like the taste. Or fizzy drinks. I have been drunk on many an occasion, but I’m not interested in the taste of alcohol. I will eat the same breakfast for months on end until I’m sick of it and need something new. It’s been any form of eggs for over a year now….scrambled, poached, in an omelette…
Anxiety, eating disorder, and depression: What’s known as comorbid experiences I seem to have had in spades.
- I have severe anxiety and have had depression in the past (although you wouldn’t know it to look at me, I’m good at camouflaging, remember?).
- As a teenager I had an eating problem. I had some puppy fat just before reaching my teens, and then boys happened. I severely restricted my food intake and was very thin. But I grew out of this in my late teens: it wasn’t logical, not healthy.
- I can seem obsessive: I have to tidy L‘s very messy room as soon as I get to his, I can’t concentrate in mess. My belongings in my room are straight and orderly.
- Apparently poor muscle tone is a thing (I am known to have ‘noodle’ arms).
- I am always tired (fatigued). I can sleep a couple of hours after having had a good eight, nine, ten hours sleep. It got to the point I would ask for a diabetes test yearly: a person shouldn’t be this tired all day, every day. Yet, when you consider the constant work my brain has to do to traverse the social mind-field it’s no wonder I’m exhausted.
- I have issues with lactose as an adult, and get tummy upset when I’ve had a tough time.
Things that need answers, things that niggle me: Did you know that it’s common for those on the spectrum to clear their throat repeatedly? I didn’t. But I do it. It bugs me. I do it a lot, to the extent I’d explained it away as a result of large tonsils, and if only they’d taken them out when I was younger? But why do I need to do it, why is that a thing for autistic’s?! Also, why is there a question in the Rdos Aspie Quiz that asks “Do you have odd hair (for example multiple whorls, standing up when short or other peculiarities)?” I do, but why is that a thing?!
Whilst this has been a very confusing time, and I have had to and continue to reassess who I am, who I thought I was, and my experiences in light of autism, it is a relief. It makes sense, and I don’t want to change who I am…I enjoy being me, even when in the past I’ve struggled with the fact I am not anything like other people and have been incredibly lonely, I still, even then, would rather be me and see the world as I do.
I still think maybe I’m wrong. Maybe I’m not autistic at all, just weird all along! We’ll see….