Autistic at a Wedding, the Doctors and a Gig

Autism is Not a Thing

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.

Autism Influences What You Pay Attention To

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).

If You’re Less Able to Pay Attention to People, It Takes Longer to Learn How to Communicate With (or Like) Them

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.

1. Weddings

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.

2. At the Doctors

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.

3. On Stage

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.

Emotions continue to be a mystery, often an inconvenience and something that can both divide us from, and connect us to other people. I realised I haven’t covered anxiety or anger at all. Perhaps that’s for another blog in the week I have impulsively committed myself to…

2 thoughts on “Autistic at a Wedding, the Doctors and a Gig”

  1. Thank you for this series. I relate so much to what you are writing.

    Pet peeve is the drs seeing something different than what I’m saying. Conflict shuts me down, so it’s no-win, really. I take time to find a good Dr, and then hope they stick around…

    A little over a year ago, I spent 5 months chasing my tail with a very quiet 12-yo daughter in severe pain. Series of issues all the way back to an incompetent ultrasound, but without fail everyone we saw dismissed her pain because she internalises. “She (we) are getting maybe 2 hours sleep a night” just didn’t register with anyone. People consistently downgraded pain scores and their perception of pain relief effectiveness and we just weren’t believed.

    Seriously. How bad does pain have to be before you’re only sleeping a couple of hours a night from sheer exhaustion?

  2. I’m going to try to remember the ‘person brain ping’ thing. Definitely find animals easier to relate to than babies. And have only recently become moderately good at working out (some of) what’s going on inside my body.

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