I treated myself today: I visited the National Gallery at Trafalgar Square in London and spent several blissful hours wandering, lost in contemplation of the exceptional collection of paintings on show there.Read more
I had another sensory problem at work today: I was taking part in a video-conference meeting and had to leave because I couldn’t follow the spoken words of a participant from the US.
I found that I was concentrating so hard on recognising each word I couldn’t work out the overall meaning of what he was saying. The effort was tiring: after about 5 minutes I couldn’t handle any more and had to leave.
It left me shaking and I had to go for a walk outside to calm myself. I tried to make sense of why I now have such problems to a much greater degree than I ever used to, but ultimately failed: I just don’t have the answer.
For the time being I think I’ll simply have to avoid such meetings. I’m due to see somebody next week for an assessment of my working environment, and perhaps between us we can arrive either at some solution or an accommodation that mitigates my sensory problems.
It’s hard to describe an experience to somebody who has little to compare it against. What would it be like to sense magnetic fields, or see the polarisation of light? How would it feel to be a cat?
You might speculate but there is no way to know. All you can do is imagine, drawing parallels with things you’ve seen or felt yourself. And it’s the same when somebody neurotypical tries to understand the experience of being autistic.
The same applies going the other way, of course. An autistic person like myself can never experience being neurotypical either. There’s even a name for this: the Double Empathy problem.
The thing is, while most of us autistics are all too aware that we experience the world differently to neurotypicals and that neurotypical assumptions about us can sometimes be wildly inaccurate, few neurotypicals have the equivalent insight.
This leads to misinterpretation of autistic behaviour when it’s viewed through that neurotypical lens. When all you see of something is what’s on the outside, you have to guess what’s going on inside based on what you’re familiar with. In this case, assuming that the causes or triggers are the same for autistics as for NTs.
We autistics are a minority neurotype. The consequence of this is that while we encounter NTs frequently, they don’t meet us nearly as often and don’t have the same opportunity to become familiar with our differences. We aren’t well understood, and that can lead to fear.
Filling that gap in understanding is so important, but there’s a communication barrier. How can we describe our internal experience in a way that neurotypical people can relate to without making it seem like a minor variation? That’s how we end up with misunderstandings like, “We’re all a bit autistic.”
I don’t have the answer. I don’t even know if there is an answer but I keep searching. There certainly is such a thing as an autistic experience because so many of us can relate to each other in ways that don’t happen between us and neurotypical people.
I’m autistic: I know how that feels. I can describe how it feels in ways that other autistics can relate to, but there’s always a frustrating gap in understanding with a neurotypical audience. The shorthand that works fine with others who share my neurotype loses meaning with those who have a different neurology.
My belief is that science alone–psychology, neuroscience and so on–probably won’t arrive at an answer any time soon. It’s going to require fresh approaches that break down the traditional barriers between disciplines to approach it from new directions.
Because communication lies at the heart of the problem it will undoubtedly need to involve those who specialise in those fields. Not just linguistics but all manner of communication: the domain of artists.
An over-reliance on words and repetition of established patterns makes new directions and new shapes of thought much more difficult: a poet or painter can capture and convey the feeling of an experience in a transcendent way.
Think of a simple experience: perhaps eating a chocolate. While the mechanics are important–body heat melting it, the action of chewing and swallowing, the workings of the taste buds and digestive system–they don’t tell you how it feels. There’s a whole level of description missing.
Bridging the communication gap will take a combined effort, a multi-disciplinary effort. New thinking is needed to break out from the confining paradigms we find ourselves with right now.
Still waters run deep
If I had a penny for every time I heard that phrase growing up…
My school reports are year after year of consistently high academic performance and hopes that I might participate more and develop socially. I was lucky to have a natural inclination and ability for learning: it compensated for and allowed me to “get away with” being socially awkward.
…consistently impressing with her quiet, conscientious approach and with the high standard of all her work.Form Master, Midsummer Term 1989
A first-class report. […] She is very modest about her ability and must make sure she does not under-sell herself at interview next year.Form Master, Midsummer Term 1990
Her consistent performances are exceptional. If she can develop her inter-personal skills more fully she will do very well indeed.Headmaster, Midsummer Term 1991
You see, if I’d not been so capable academically my poor social skills would likely have been seen as more significant. As it was, doing well in my studies meant that my difficulties in other areas were overlooked or glossed over.
I said I was lucky, but the fact is that the highly-structured world of school masked the significant trouble I had navigating an environment like university that relied much more heavily on interactions with other people. My lack of a social network left me isolated and lacking the support I needed, and because I’d not been in any similar situations before I had no idea how to cope.
It left me with deep feelings of failure and shame: everyone had expected me to do well because that is what I had always done. I had tied my own measurement of my worth to that feedback, to those reports of how well I performed.
I let them all down.
I expected to face rejection: after all, I was valued for how well I did and I had just failed. It’s hard to explain how powerful the fear of rejection was, how ashamed I felt of failing.
How worthless I felt.
The echoes of that are still present, still affect me to this day. That was the point at which I shattered into the broken pieces that I work so hard to hold together.
I can mouth the empty words, say that I am worth something, but I don’t believe it. At heart I know I’m a failure: the proof’s there plain to see.
Those still waters, they really do run as deep as they say. And who knows what truly lies beneath that calm surface? For me it’s the wreck of the promise I once showed.
Overload is hard to describe to somebody who doesn’t experience it, because it’s not simply the physical pain from something being, say, too loud. Its effects run much deeper.Read more
“It’s not the end of the world,” my mum used to say as I cried inconsolably over something that most people would regard as trivial. Perhaps someone else took the particular cookie I’d fixed my eyes on, or the books I’d carefully lined up had been dusted and moved.
The thing is, when you’re autistic and you’ve got an idea in your head about the way things will be, anything which disrupts that expectation does feel calamitous. The certainty we were relying on has fallen in ruins. It literally is as if the world shattered under our feet.
When people try to console us by “putting things into perspective” it can actually make it much worse because they are demonstrating a lack of empathy: they’re projecting their perspective onto us, and it doesn’t match our experience.
For many autistics, having a predictable environment is very important. We need our routines so we can feel at ease, and when we go outside our usual bounds we like to know what to expect in advance: to be prepared. When I go to new places I research beforehand so I know the layout and how it looks.
I’ve learned to manage my expectations up to a point but I don’t always succeed, and when something doesn’t turn out the way I thought it would the blow can be crushing. The feeling is so intense that I can’t see past it and be objective. It might as well be the end of the world.
This month, December, always comes with a mixture of anticipation and dread. It seems that for everything I enjoy about it there’s something else that taxes my endurance.Read more
I never imagined when I used to see or hear about disabled people that one day it would include me. I don’t think anybody does: unless you are disabled yourself it’s always something that affects other people. Less fortunate people.
Be honest: that’s how you think of us, isn’t it? You feel glad–lucky–that you’re not disabled. Because that would be awful. Am I right?
That right there: that’s stigma. You feel sorry for us, pity us, hope you never become one of us. You see us as damaged people. You can’t believe it’d ever affect you, that you could ever become disabled yourself.
I know, because I used to feel that way. Disabled people were some other group, over there, not like me. There was a difference, a gulf that could never be crossed: that could never be me.
I had no instant of revelation, no light-bulb moment. The idea that I was disabled myself took time to sink in. I spoke the words long before I accepted the truth and believed them; I denied it to myself. I worked full-time, had my own home: how could I reconcile that with being disabled?
What I felt was internalised ableism: I had become accustomed to equating disability with failure. Really accepting that I was disabled meant confronting my own prejudice, admitting it existed, and then unlearning it.
That journey has been a hard one. It’s more than uncomfortable to admit that you don’t live up to your own moral standards, but faced with a choice between denial and change I realised I had to change if I was ever going to accept myself for who and what I am.
I am disabled: that means there are things I can’t do and situations I can’t handle. It doesn’t mean that I ought to be able to do those things, and it doesn’t mean I’m a failed human being: I’m not. And I accept that.
This is the first post in Autistic December, a daily series about the impact on my life of being autistic.