I realise not everyone knows that autism isn't a thing. So I'll just reiterate that. You can't isolate it under a microscope and go "Aha! There's some autism!". It's a way of being in the world and processing the world, which is why most autistic adults polled (by the National Autistic Society) prefer to say they're an autistic person, rather than a person with autism. It's part of our very identity.
Here's an analogy for autism which is sometimes not just an analogy. Most people, if confronted with a line-up featuring an avocado, a trombone, a bicycle, a snowdrop, a person and a game of Battleships, would be inexorably drawn towards noticing and interacting with the person first. Bits of their brain would be pinging "Person, person, person". Autistic people don't have such a strong automatic brain-ping just because it's a person.
In addition, other bits of their brain and body may be registering strong signals which average people would filter. Maybe things like "Ooh, it's hot in here…my wrist feels funny….what are those shapes in the light…my retina is fuzzy" which further dampens down the "It's a person, take special notice!" signal. It doesn't even necessarily mean they prefer, say, snowdrops, to people. It's partly that people move around, make noise, change, shift and can be over-stimulating and confusing. If your brain filters less stuff, then you're not necessarily going to seek out things which would overwhelm it (although you might do, as a sort of "high").
As an example; I tend to notice dogs more quickly than babies, partly because I feel more comfortable with dogs and know how to read them. If both a baby and a dog are coming towards me at the same time, then I'll "see" the dog first because it lights my brain up more, as well as being less scary. I am aware nowadays that this is technically a social faux pas, and most people, especially women because of the social conventions that require women to be more nurturing, would notice the baby first. Then make baby noises and want to hold it. I expect however, if the apocalypse had finally happened, then I might notice the baby first because I'd be thinking "Phew, a baby, we may be able to continue the human race" (as I am quite invested in humanity really, despite our flaws).
To cut a lot of long stories short, the lack of an automatic "Person Brain Ping" tends to mean that instead of easily, unconsciously embedding loads of learning about social relationships and how to express them (including emotional displays) from a young age, autistic people learn about lots of other stuff too. Surely an evolutionary advantage to have some people keeping their eye on other balls- but it does mean that in a world which increasingly requires people to display an unassisted, socially orientated sort of "normal", then autistic people can be at a disadvantage.
The consequent relative difficulty identifying, describing and feeling emotions is known as alexithymia. Now, technically, everybody is born alexithymic. Babies don't emerge going "I'm actually feeling rather low as it goes, with a temporary slight element of euphoria now you've given me that milk". They learn emotions in conjunction with others, who might reflect their own bodily sensations back to them. They also learn the ways to display emotions which are "appropriate" to the time and contexts they find themselves in. (Which are ever-changing. Think of the "stiff upper lip" that Second World War pilots were supposed to display, whilst it was de rigeur for Gulf War Pilots to express anxiety and fear in news interviews; if they didn't people would have judged them as emotionally dysfunctional as beliefs about emotions had changed so much, even in fifty years).
Many autistic people have some degree of alexithymia. Not displaying emotions can often be taken as not having any. In my experience, and that of many others, it can be that there is a degree of "cut-off" from one's own feelings and sensations, but this is quite likely to be due to experiencing yourself and the world as a sort of roiling mass of confusing sensations, affects and perceptions which don't bear easy relation to words (or to the gestures and expressions that other people use to display them). I'm wanting to keep these blogs medium-length, so I'm now just going to sketch a few contexts in which I've moved from pretty alexithymic, to reasonably emotionally expressive over the years. I'm not saying that this move is necessarily always a good thing either, but it has embedded me more in the social world. It also means I'm very alert to people expressing emotions in a way that feels "true", versus ways that feel "false" and thus confusing.
So, weddings did not used to be occasions of high feeling for me. There was often nice food but awkward conversations and music that was too loud. The rote performance of things people seemed to do just for the sake of tradition, like photograph set ups that took ages or wedding vows that were the same as everyone else's or particular (usually uncomfortable) dress codes didn't make sense to me. I think this was a mixture of the very conventional weddings I went to in my twenties, and the fact I wasn't as connected with my own feelings. In my early thirties I went to the homemade, intimate pub wedding of a poet friend and enjoyed that more but remember asking another poet friend, in quite a Mr Spock-like way "Why are people crying?". He said it was because they were happy. I just didn't get it.
Then, at my own wedding, which I'd unknowingly arranged to be as autism-friendly as possible, with an afternoon-tea theme, poems, fifty guests and a nice, quiet lighthouse setting, I felt a thing which I called "The magic cloud of love". It seemed to be something that the goodwill of the guests (who, under what seemed quite sensible criteria were all people that we liked) transmitted to me. It didn't come just from me, or my husband, it was shared. I expect things were going on with similar heart rates, neurotransmitters like oxytocin and May sunshine. Anyway, once sensitised to it, I've been able to feel it at other weddings. In fact, when asked to read a poem at a friends' wedding more recently, I felt the communal magic cloud of love and my own happiness for the couple so strongly, I choked up at a couple of points in the poem.
Part of the reason I'm now able to feel it is because I've named it, I think. Autistic people can struggle with proprioception (feeling where your body is in space, balance, touch etc) and interoception (being able to identify the sensations inside your body). Because I now know what the internal feelings for "There's a magic cloud of love going on in the vicinity" are, I can fully experience it.
So, talking of interoception. Doctors expect you to be able to name what's going on inside you. They also expect that if you are in pain, then you'll show them it on your face and in your gestures. You might have a special "pain" voice. I didn't really know this until very recently.
Autism aside, I grew up in a place and time where you were expected to get on with things without making a fuss. I recently read a memoir about a Lancashire farming family who "never spoke" and I thought, compared to our family they were positively garrulous. I sort of took it for granted that people didn't necessarily express negative feelings. I remember making a work call the day after my Mum died, and having to mention it to explain why I couldn't be somewhere. The woman on the other end of the phone said "But you sound so well and cheerful!". I thought to myself that it would have taken more effort to work out how to do "The voice you're supposed to have when your mother's just died" than "Normal voice I'd have on a work call".
I genuinely imagined that Doctors mainly took account of the symptoms you told them about, and any tests they did on you, not how distressed you seemed. But, post-diagnosis, having read other autistic people on the subject, I know that doctors do take account of that other stuff. Studies show they also consistently underestimate womens' pain, so there's a double whammy there. Anyway, I now wonder if that's why whenever I mentioned past eating disorder problems, I'd made it sound more like a bit of a bother, than a major trouble, so my bulimia was never treated or attended to (It may also be that things have moved on considerably in the past twenty years).
Last year I had an allergic reaction to anti-fog goggle mist and my eyes kept swelling up, made worse by drops that pharmacists prescribed. I was thoroughly fed up after a couple of weeks of this, and worried that I'd have to do another gig with red eyes. The doctor didn't seem to see it as very urgent, but then, remembering that expressing some actual feelings might be useful, I purposely told him how worried I was about the gig and even cried a bit. They weren't fake tears in any way, but they were tears I would usually have held in (or maybe, not bothered to let out?). It seemed to have a miraculous effect anyway, because he immediately rang the dermatologist and I got me an appointment for the next day.
And finally, talking of gigs, I have probably learned most about how non autistic people need to have me express emotions in my work as a professional poet and comedian on stage- but at the same time, it's also a context in which being fairly alexithymic has significant consequences (positive and negative). I do however get constant feedback about what works and doesn't work (sometimes instant feedback- in the form of laughter, or feedback afterwards when audiences come up and talk about their reactions to particular material or poems). I've learned that if I allow myself to connect to the feelings in my poems, without becoming overwhelmed by them they're more likely to "transmit" themselves to members of the audience. It's a form of the emotional self-regulation that usually happens when a primary carer contains and reflects back a baby's expressions and emotions to it.
Sometimes however, I forget that words can conjure up emotions a lot more quickly for many people than they can for me. A few months ago I did a small, intimate performance in a village hall. After a poem about being connected to your ancestors down your maternal line, which I know people can find emotional, I then moved on to one of my funniest poems about two women swimming breaststroke in the pool while talking and obstructing everybody else. One young woman had had to go out at the end of the ancestors poem because she was crying so much, and I said to her later, when she bought a book, that I'd planned my set so that people would immediately have something to laugh at after the emotional poem, so I wished she'd stayed for the funny poem (!).
I can also be out of step with people as a gig attendee. At a poetry festival not long ago, I went to a one-person show that had a lot of emotional content. Possibly because I was thinking about my own stuff and in very analytical mode, it didn't impact on my emotions at all. But when we came out, I was sat at a table of people I didn't know well and started analysing it a bit, and realised we were at complete odds. They were sort of shell shocked, and wanting to stay in the emotions they'd just experienced, to the point that I felt like cheery old me was being utterly insensitive to where they were. (Though at the same time I had a really strong urge to talk to someone who wasn't in the middle of feeling lots of feelings so we could just have a good old chat about it).
Conversely, the following day I was so tuned in to the emotions of the poets I was seeing, I kept streaming with actual tears in sets that other people didn't seem to find as emotional at all (particularly, I noticed, when it was poems about people holding their feelings back). I couldn't really work out why one day I'd had no emotions, and then next day loads and did wonder if it could be because the previous day I was very tired, whereas the next day I'd slept much better.
I'm giving myself permission to blog about autism every day this week. There is SO much I could say and usually I don't say it. There are other "messages" I'm supposed to transmit like- "Come see my show about Northern women" or "I'm really normal for a poet, honest" or "Do book me for that workshop, I'm great at running them". Anyway, this week I'm jamming my own signals. Starting by writing about the many undiagnosed autistic people I meet.
It's a bit taboo to diagnose people without being a psychologist or knowing someone's full developmental history. But myself and many autistic people can't help it. We notice, even if we don't say. We have autism-dar (like Gaydar). Sometimes it's so obvious to me it's distracting. I can see someone's brain and a body working and processing the world in a particular way. I want to say "Hello! We share a neurotype, but you possibly think autism is only Rainman or The A Word or Curious Incident of the Dog in the Night Time" or children locked up in padded rooms".
The arts can be a great environment for autistic people. Quirks and different ways of seeing the world are positively welcomed, there is less pressure to conform or fit into one particular working environment.
Autistic creatives are perhaps particularly less likely to be diagnosed because of the common misinterpretation of "lack of imagination" in the diagnostic criteria- which as Dr Lorna Wing, who came up with the concept of the autistic spectrum once told me- actually means a lack of SOCIAL imagination (and ALL the diagnostic traits will usually become less obvious as people mature and learn).
This is perhaps even more acute for creative men, who actually fit the "female" profile of autism more closely and thus will have their traits dismissed. The undiagnosed autistic creative person is often able to focus with brilliant precision on their craft- be it music, writing, visual arts or performing. Their enthusiasms and passions spark and arc and can be a way to communicate and share with others. They can be open, exploratory, warm and charismatic – all further confounding stereotypes about autism, making them less likely to be diagnosed by themselves or others.
The art that an autistic creative makes or facilitates can resonate universally, but also function as another sort of autism-dar. I've spoken to several fellow autistic women writers for example, who recognise Virginia Woolf as thinking, processing the world, writing and being in a way that fits our neurotype.
The fact that I'm an autistic creative myself and see so many others thriving in similar lines of work contributes to me sometimes feeling I'm "making a fuss" by having a diagnosis. They're proof positive that fulfilled lives without labels are perfectly possible- though I do sometimes think they might be a lot kinder to themselves in the context of a neoliberal capitalist system which can chew up and spit out flexible creatives if they knew more about the ways they experience the world differently.
I love to meet a maverick woman and recognise her as a fellow traveller in the autistic mode of being-in-the-world.
She's usually deeply honest and critical of the world around her, often in the interests of fighting causes for others. Learning hard lessons about what women are "supposed" to be and do and say and look like, she might ignore them entirely, conform to some degree whilst maintaining her independence, or cast them aside with relief at a certain point. She might be a loud maverick, whose voice carries above others or a quiet maverick who subtly, stubbornly goes her own way, often to the bewilderment and (possibly) eventual admiration of her peers.
She's less likely to be diagnosed because there is still a lack of recognition in the diagnostic criteria that autism is just as common in women as in men, and a lack of understanding about how the different ways women are socialised can mean their traits are "masked". She's expected to do emotional labour so often learns how to do so, and gets on and does it.
This is in deep contrast to the nerdy man, who is most likely to be picked out as "Weird", "Probably Aspergers", though cruelly often not actually diagnosed due to being from the wrong generation or read as just a quiet introvert.
They're the Dad or the husband who is much castigated for having no clue about social or relationship rules, because people are less likely to take the time to explain them to men than to the women they're trying to get to do their emotional labour.
As people less likely to absorb gender schemas, there is a high correlation between being trans and autistic. But, due to the huge challenges in recognition for trans people, it may often be difficult to recognise or seek the possibility of an autism diagnosis too.
Ditto a strong correlation between anorexia and autism in young women- to the point that there are calls for anorexic women to be automatically screened for autism. (But we really are still in the early days of recognising this). Hence also why many autistic women are misdiagnosed with depression, anxiety or particularly Borderline Personality Disorder. That's apart from the fact that these things (and associated trauma) can commonly be co-morbid with autism.
I haven't been diagnosed with anything else personally, though did occasionally try to interest doctors in me having an eating disorder in my twenties (bulimia) without much success. I suspect my inability to adequately "perform distress" or articulate symptoms clearly wouldn't have helped.
Anyway, this is in no way a definitive list or attempt to describe the complexities of autistic being. It's some observations of the categories of people I meet who are likely to be unrecognised as autistic. It can be hard work pretending not to see them.
Maybe nearly everything in my life is because I have a lower boredom threshold than most people.
I will not talk about the neurotransmitters norepinephrine or dopamine next, interesting though I find them. I will not talk about running around a classroom as a little girl because I didn't do that. I sat quietly. Running about from boredom was for my twin brother and we divided roles up with an instinct for balance we wouldn't be credited for.
When English lessons became the reading aloud of set texts and Cider With Rosie, Measure for Measure and Juno and the Paycock were rendered in a babel of uncertain voices, I read ahead to stave off the overwhelming feeling I would die if I had to hear words at this speed any more. This was fine until it was my turn, or I got more than a book ahead.
Me holding off a feeling of boredom similar to the relentless needling ache which made the hummingbird tattoo on my upper arm one November afternoon in Newcastle usually looks like me reading a book, or a phone screen. Sometimes it sounds like me talking very fast and interrupting my own thoughts to disagree with them. Sometimes it looks and sounds like me saying words under a spotlight with an energy that means dopamine and norepinephrine fire in other people's brains and they think they like me.
Society seems to be worried that the internet means it's attention span is too short, but it could reassure itself by hearing most people speak on a platform, or by standing in a post office queue and seeing how many people are not tapping their toes or each other.
In a college room that would look the same now, on a playback device that would look very different now, I heard a three minute BBC local radio news bulletin and a one minute commercial radio news bulletin. The BBC bulletin contained some unnecessary detail about a council bin collection problem. Time slowed down even more while I heard it, though perhaps I should reflect on the fact that I can't remember anything that was in the commercial radio bulletin. I went to work for it anyway. Commercial radio. Even though the level of pay and job security was about half of that of the BBC. But I could read the news without tapping my toes impatient for my own voice to be over.
I went out into a new world in a succession of radio cars, mostly Audis and VWs, until they took them away from the news room and gave them to the advert people. So then I stopped going to press conferences and recording accents I didn't grow up with and lived more for nights of poetry and interpersonal conflict and cigarette burns in the back of my wrap dresses before the smoking ban.
Sitting in a staffroom with trays of Cadburys Fingers and copies of the TES on low coffee tables I zoned out while I was telling a teacher about the poems I would get her Year 5s to write and woke myself up by suggesting instead that we get them to imagine they were in the "Poetry Idol House". A couple of projects with loud and joyous finales and banners in the school hall later, I worked out how to get them to write poems about things other than the thrill of imagining we were in the Poetry Idol House.
I thought doing a PhD would be as boring as filling out a form or conjuring a date from infinite possibilities suggested in an email, but it was a succession of new tasks and ideas and reading. It was like swimming rather than running for two hours with only endorphins flooding in, and no joint pain afterwards. It was a shiny, slim-fit jacket round all the intense brain activity that would otherwise disappear into Thirsk's mackerel sky and I am naked without it.
I told my husband that I think we're mainly together because he's not boring. Not because he runs restlessly round a field or gambles on dogs or reappears with hospital bracelets or bruises, but because his thoughts and words come from an alert brain and gut.
I am trying to do fewer things because I have been so very busy for years but my brain is buzzing like a trapped bluebottle and most options to keep it awake involve the short-term pain of more boredom. An email chain, a handbook, a contract. So, for now I'll write things like this and add them to the world's unsettling hum.
It's okay not to want what most other people want, in the way that they want it.
Applying the word "Failure" is a means for some people to stop other people doing certain things in a certain way.
Applying the word "Success" is a means for some people to keep other people doing certain things in a certain way.
Beware of any communication treating the concepts of "Independent" or "Dependent" as absolutely good or absolutely bad.
You probably do, and did, things earlier or later than other people. Time is relative. We're all sometimes tortoise or hare.
Your work may look like play and your play may look like work to other people. That's okay. The boundaries between the two aren't as rigid as society makes out. Working at play and playing at work is often the key to happiness.
You're right to be wary of the phrases; "It's always been done this way", "Just because" and "That's just the way things are".
You may never feel that you belong- but there are lots of places where you can belong by not belonging.
You exist in a place and a time- but there are lots of other places and times, past and future you could live by.
Learning doesn't only happen when other people tell you they're teaching you, often especially not then.
A community to value is one that values you.
Sometimes you might need to be helped to have help and supported to have support. (The rare) people and organisations which understand that, may well be your best help. It may take a lot of trial and error to find them.
a translation of any communication or piece of art is always an act of kindness.
it's okay to point out that some of these manifesto points sound like fridge magnet slogans or Instagram poems.
Comedy lets you say two contradictory things at once- and also doesn't.
it is just as important to learn how to be listened to as to learn how to not be listened to.
It is just as important to learn when and how not to listen as to learn when and how to listen.
If all you that you ever said, demonstrated, practiced, believed, lived, Tweeted, skated, swam, ate, painted, excreted was that there are multiple truths, then you would have been kinder to the world than most people in it.
The thing we call "you" and "not you" are only ever intersections of times and places, but this is one of the insights that is hardest to work into conversations about shopping, football and Love Island. Find the people who will have those conversations.
Two days of conferences. Or, as they're alternatively known, the prosopagnosiac's nightmare. (Person bad at remembering faces).
An answer of no usually seems to offend.
(Offended tone & still not giving your name) "But we met at – " (name event where there were lots of people, after which I've subsequently met a thousand more people. Give no clue what we talked about).
By turning your name tag towards me so I don't give into the urge to do this myself.
"Hello!" (Happy face and look of recognition). I'll probably work it out eventually.
Be visually distinctive and/or don't ever change what you look like. Particularly your hair.
Drop clues into the conversation early. Like "It was a nice day when we got married. At that lighthouse" etc.
Say mournfully "You probably don't remember me". This allows me to say "No, I don't remember anybody". Though you'll usually be happy to find I do remember you once you say who you are/where we met/what we talked about.
Look like lots of other people I know.
Say "I'm bad at remembering names too". Names and faces are a different thing. But this does make me feel a bit better.
Assume I'll recognise you because you just spoke on stage. This is a very fair assumption, but it turns out I often don't recognise people who've just spoken on a stage because then you were small and far away, and now you're big and nearby.
Be somewhere that I'm expecting to see people I know, but in another context. For example, I recognised both a comedian and a poet in Hull today but assumed I was just imagining I knew them because I was at an event which wasn't for comedians and poets. Also, be anywhere I wouldn't expect you to be. Another town, an event for people who aren't you, my bath etc.
If I've met you more than four or five times or seen your photo a lot then I'll probably recognise you anyway. Also if we're related/married. Maybe.