Yonder is one of those words that I love for the memories and feelings it evokes. For me it has ties to childhood and family, to places heavy with significance, and to lost loved ones.Read more
The past twelve months seem to have passed quickly as I sit here looking back over them. I’ve been places both real and figurative, seen amazing sights and met some lovely people. There have been highs I could scarcely have dreamed of, and lows I would rather not dwell on.
In January I travelled to Sweden for the first time to visit my daughter who had moved there the previous summer. We had a lovely time hanging out together and I got to indulge my tea habit.
Leaving her to return home again was a bit of a wrench, but then later in January I went to my first spider show (SEAS–South East Arachnid Show) with dear friends Gemma and Dom. I didn’t indulge myself but did help a certain person acquire four tarantulas.
Fast forward to March and, wearing my Autistic Inclusive Meets director hat, a trip to Parliament with Emma for the launch of the Westminster Commission on Autism’s report into harmful fake autism cures. As you can see we were completely in awe of our surroundings and took it all very seriously.
May brought a visit to the British Tarantula Society’s annual show in Warwickshire and the acquisition of my first tarantula. Not bad for a woman who used to be afraid to get into bed if she saw a spider on the bedroom wall or ceiling.
By the end of June I was counting down days, eagerly anticipating my upcoming visit to Canada and the opportunity to meet and hang out with my beloved friend Patricia in person.
We had an amazing time over the two weeks I was there, getting to travel across the Maritime provinces, visit some wonderful places and meet lovely fellow-neurodivergent people. I completely fell in love with Canada.
It almost broke my heart to leave and come back home: how I cried. But I’d not even been back two days when my daughter arrived from Sweden for a visit with her boyfriend. It was fantastic seeing her again and we got to do some fun things together including visits to Stonehenge and the Natural History Museum.
Unfortunately, after her visit burnout hit me hard along with PTSD from the relationship I talked about in my previous post: I ended up being off work for the best part of two months before starting to recover towards the end of the year. It was a difficult time with several episodes of self-harm.
In the middle of September, while I was off work, I got to visit Stroud and meet up with my dear friend Sonia before going to see the fabulous play The Duck by Rhi Lloyd-Williams. (Note to readers: the play will be touring at some point in 2019 and I highly recommend going to see it.)
I’d been having something of a midlife crisis in the midst of my mental illness, and realised that I needed to make space in my life for artistic expression. I bought myself a copy of Neil Gaiman’s Art Matters, illustrated by Chris Riddell, and found it truly inspiring.
It didn’t hurt one bit to get these encouraging words from Neil himself either. Feeling inspired, I got an additional boost when invited to be part of the launch event for close friend Jon Adams’ charity, Flow Observatorium.
I was also deeply honoured when Sonia asked if I would read a message from her since she wouldn’t be able to attend. That month, September, also saw me turn forty five and was a turning point in my mental illness as I began to recover.
October saw me teaming up with Gemma to welcome the newest regeneration of our favourite Time Lord: we were both agreed that we loved the Thirteenth Doctor as portrayed by Jodie Whittaker.
Less than a week later and I was meeting another lovely friend, Naomi, in a field down in Sussex for the re-enactment of the Battle of Hastings at Battle Abbey. Great day out that would be hard to top.
Having said that, November excelled itself as I went to the O2 Arena to see Florence + The Machine live in concert. Wow! Utterly breathtaking, and an experience I won’t forget in a hurry. The atmosphere was so positive that I was buzzing for days.
Rounding off the month, I got to visit Tate Modern and experience some exceptional works of modern art, including some de Stijl paintings by van Doesburg and Mondrian, a whole room of Mark Rothko, and so much more. That day was completed wonderfully with a meal in the company of Emma and Amy, fellow directors of AIM.
Into December now, as a couple of weeks later I was back up in London for a meeting with a PhD research student from France, following which I bumped into dear friend Jon. We had a good chat before I left to explore the National Gallery, just off Trafalgar Square.
It’s no exaggeration to say I was in heaven! Over the course of nearly four hours I wandered the galleries, lost in a kind of rapture. It’s hard to single out individual works, but the four van Gogh paintings on display were beyond comparison! I stood in front of each of them, examining the brushwork, feeling the emotion laid onto the canvas along with the oil paint.
And so at last, with no little conceit, I finish up my review of the year by placing a painting of my own alongside the genius of Vincent. Not for comparison, not for any other reason than this: 2018 was the year I finally felt comfortable calling myself an artist. And that makes it a good year.
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.
Day 29 of 30 Days of Poetry
Across the fields they fly,
Fleet shadow wraiths unseen
By stolid human eye.
Yet keener souls divine:
Dogs bark a herald cry
Then cower with a whine.
Foul spirits of the night
Round my lost soul entwine,
All summoned to my plight.
The candle flame burns lean,
Its feeble dying light
Faint hope to stand between.
Day 23 of 30 Days of Poetry
This well-trod path, how well is known
What lies beyond its every turn.
How small it feels to legs age-grown,
When once the distance caused concern.
In days of youth it carried knights
To boldly rescue maidens fair
And hosted bright-imagined flights
That thrilled the children playing there.
And yet this world of fun and play
All lay within restricted bounds:
Stout ramparts circled, tall and grey,
To seal the limits of the grounds.
The gate stayed barred although I'd strain,
Pulled by its enigmatic thrall,
The burning question in my brain:
What marvels lay outside the wall?
Day 3 of 30 Days of Poetry
Hair needs brushing
Time is crushing
Life's too frantic
You pay your bills
You take your pills
Still look for thrills
Run to the hills
Find what's missing
All that's wrong
Take a long
Look at life
Cut the strife
Wield that knife
Quell the shakes
Soothe the aches
Hit those brakes!
Sit and chill
Life is best
When it's still.