It is World Autism Awareness Day and my autism is making itself known. One of the most frustrating parts of my being autistic is the exhaustion and headaches that follow big events.
All that processing, all that sensory bombardment, all that concentration on interactions, and no matter how wonderful and amazing the day, I shall be following it up with difficult days ahead.
My sleep is disrupted, my head aches, I am bothered by sound, I have no energy, my joints ache from the rigid, tense way I have held myself together. Three days later and it still weighs heavily upon me.
This isn’t a whinge. I don’t really see the point in complaining about something that I knew was coming. It was worth it. It was worth the pay off – it usually is.
On Saturday night I attended the opening of Neither Use Nor Ornament at Ovada Gallery, Oxford. I was honoured to be Poet in Residence for a fabulously neurodiverse exhibition put together by, and including, autistic artists as well as non-autistic. It was all about having an equal platform, and all about the art.
It’ll be on until the 28th of April 2019 and if you have the chance to go along then please do. You may have missed my reading, but you can still find my voice in a suitcase, endlessly circling round and around.
It was a brilliant day, but one that would inevitably lead to where I am now. That is a part of my autism. It may seem like an awful and terrible cost, but that same autism put together the words and the patterns of my poems. That same autism had me tapping my toes to the rhythm as I read them. That same autism had me lost in the beauty of others’ artwork, and fascinated by such a day of exchanging information.
Who am I to complain?
Autism awareness is the reason that I didn’t reveal my diagnosis until halfway through my performance. A little knowledge can be an obstacle to communication.
I was aware that if I introduced myself as autistic from the beginning, that my words could be filtered through an indulgent eye. I could be labelled as “inspiring” and “brave” and lose my artistry to my autistry.
It is an attempt at kindness that can hamstring an individual’s development. Criticism is always hard to hear, but without it we do not grow or develop. We become trapped by well-meaning kindness when we aren’t given the opportunity to improve.
A little awareness of autism can be a difficult thing to overcome. People are designed to make assumptions about people within seconds of meeting them. I find it fascinating that those who know I’m autistic before we meet will often make very different assumptions to those that don’t. I’m the same person either way.
Those with acceptance of autism – who understand what it means and how it may affect an individual – use that knowledge to avoid preconceptions; they may let a pause linger to allow time for an answer to formulate, they may note that what comes across as abruptness may just be a communication difference and not a sign of coldness, they may ensure more clarity in their speech to avoid misunderstandings. There are lots of ways that the information can be useful to enable successful first meetings, when the people involved are more than just ‘aware’ of autism.
My autism is not a secret but nor is it something I share with everyone. Mostly it’s not relevant to a situation.
If you do know that someone is autistic try to avoid assumptions based on stereotypes where you can. They’re never useful when dealing with any individual.
Just as I’d rather you didn’t make lazy xenophobic assumptions about my Welshness, it’s unlikely that you’ll be right about much if you assume who I am based on the way my brain functions. Autism is not my personality, it’s not my sense of humour, it’s not my favourite music, it’s the way my mind processes social information.
I mean, yes, now you come to mention it, I did grow up on a sheep farm, I do sing loudly after a couple of drinks, I have been known to wear an apron and a stove-pipe hat, and rugby is the best sport in the world, but I am so much more than that.
It’s Autism Awareness Day and the pain at my temples is throbbing to keep me fully aware of who I am and how I work.
I prefer the idea of Autism Acceptance Day. Let’s all work towards treating people with acceptance and respect for who they are.
Everyone has their own joys and difficulties in this world, everyone has their own path to tread, and we can make those paths easier by accepting differences, learning about each other and avoiding unhelpful stereotypes.
Autism and Expectations 
It took me a long time to accept that I was different from the “norm.” Once I had wanted to be “cured.” Now? I realise I wouldn’t be me if I was so-called “normal”. I’ve seen the way neurotypicals behave and that’s not how I want to be, bigoted and full of hatred and fear about difference. I’m disappointed that even in this day and age, those of us who are autistic are still waiting and longing for acceptance, that neurotypicals won’t make the effort to understand us.
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Many do, but there are more who have good intentions but not enough information. We have already come a long way. I am hopeful
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“Autism awareness is the reason that I didn’t reveal my diagnosis until halfway through my performance. A little knowledge can be an obstacle to communication.” And “My autism is not a secret but nor is it something I share with everyone. Mostly it’s not relevant to a situation.”
These 2 statements hit me on 2 different levels. They are exactly how I feel about my type 1 diabetes and how I am learning to view/respect my child’s diagnosis. It is theirs, not mine. Theirs to share or not share.
It’s challenging to evaluate who really “needs” to know. I hope that as they grow, they won’t have to deal with the sting of suddenly being outed as “other”. Yet at the same time, I fear that I will be the one to do the outing.
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It’s a tricky thing to balance – there are times when it definitely helps everyone to know, and there are times when it’s unnecessary information. I hope we will get to a time when I won’t have to worry that people will make incorrect assumptions, but for that we need to move forwards from autism awareness to acceptance.
I am happy to be autistic and not at all ashamed of the label, but I have to balance that with people’s assumptions. I love it when I’m amongst people who truly understand – it can make all the difference.
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Excellent writing Rhi! Love this post and love your blog.
On Tue, Apr 2, 2019 at 6:33 AM Autism and Expectations wrote:
> Rhi posted: “It is World Autism Awareness Day and my autism is making > itself known. One of the most frustrating parts of my being autistic is the > exhaustion and headaches that follow big events. All that processing, all > that sensory bombardment, all that concentratio” >
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Thank you! 💐
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I remember a facebook meme posted by Chris Bonnello of “Autistic Not Weird” that says “When you know one autistic person
You know one autistic person.”
His point is that you have to take each person as an individual, not assume you know everything about them simply because you know one thing that is similar to another and just equate the two as the same.
I substitute at the local high school. I’m open about being on the spectrum (and get a lot of ‘but you’re so social!’ when I tell adults). I want the students to see that it’s not something that they will grow out of and it isn’t something to be ashamed of. Nor should a diagnosis be used as an excuse for bad behaviour or slacking off.
It just is – a trait, like being creative or logical or tall or short.
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Absolutely. The more people realise they will see autistic people regularly throughout their lives, the more people will understand. We are all as individual as non-autistic people are.
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