I remember the first time I heard the term Autism actually being applied to someone: I was seventeen, it was 1997, and I was volunteering with a local respite care team during the Summer Holidays. There was a huge group of children with various disabilities and difficulties, and I was there to… well… play with them really!
There was one child who must have been around twelve, and one of the people running things told me he was autistic, wouldn’t talk or engage with me, and warned me not to touch him (a warning I didn’t need, and one I wished could be applied to me).
I remember we all went to the park, and all the children started playing. I watched the autistic boy twirling on his own in the middle of the swings and slides, and the first thing that struck me about him was just how bloody happy he was. He smiled and laughed and looked as though he was catching the sunlight as it fell through the leaves above us.
That was my first glimpse of pure autistic joy in someone else. He was completely at peace in that moment. He wasn’t distracted by the games of the children around him as they ran about giggling and he was really connected to whatever he was experiencing. I was a little envious that he was so completely him, here, out in public, with no fear of being found out. I had no idea that I was autistic at this point, but I knew how strange some people thought I was, and I knew how much effort I put into hiding that as best I could.
One of the other volunteers noticed me watching him and came over. ‘Isn’t it sad?’ she said conversationally. It was a leading question, and I’m a sucker for a leading question, because they tell me exactly what the person wants me to respond with. I don’t remember what I said, but I do remember that I agreed with her for the sake of ‘getting it right and fitting in’. In truth it was one more thing I was clearly getting wrong, but it didn’t feel wrong.
I guess it was sad really. It was sad that she couldn’t see how happy he was in that moment. It was sad that for her the fact that he wasn’t playing with other children meant that he must be lonely. It was sad that she couldn’t see how successfully he was communicating his happiness to everyone around him. It was sad that I was being told how to view autism by someone who didn’t have the communication skills to understand it. It was really sad, but he wasn’t.
I keep coming back to these failures of communication, and the difficulties are always caused by an individual whose communication is so rigid that they cannot imagine ways of communicating outside of their own – and that individual is so often not the autistic person.
That volunteer could only see a child who wasn’t playing in exactly the same way as the other children. She used her social imagination to place herself in his experience and knowing that she would feel miserable not joining in, she came to the conclusion that he must be sad and that we should pity him.
She ignored all the signals he was sending out loud and clear, because they didn’t fit with how she perceived the world. She ignored his laughter and smiles, because she knew he was autistic and cannot communicate his emotions successfully, so I can only imagine she heard his joyful squeals as just noise. It’s really sad that she did not have the communication abilities to share in his joy, because it was unutterably beautiful.
Perhaps that’s why the word autism never frightened me; my first experience of it was of its beauty. It felt like a real honour to be permitted to see the intimacy of someone else’s undiluted, uncensored happiness.
I have never pretended that being autistic doesn’t come with difficulties, there are undoubtedly challenges, but if you’ve ever spoken to or been around any autistic person when they get onto a topic that brings them their autistic joy, then you will have seen that sparkle that appears in their – in our – eyes.
The autistic speaker, Dean Beadle, who I had the absolute pleasure of meeting when he came to watch my play in London, talks a lot about this concept of autistic joy. Which makes me enormously happy to know that people who need to be told about it are getting that lesson.
When you see someone autistic light up with autistic joy it’s almost like a fire is lit within them – you mention a passion of theirs and ‘Whoosh’, their joy is ignited and burns so brightly it fills their whole bodies with it. I love seeing someone go from still and quiet, to a sudden burst of activity and verbosity as they let their joy fill every part of their body. It’s so perfect and beautiful.
And it’s sad.
It’s really sad when people lack the social imagination to share in that joy, because I can tell you now, with the right communication skills, that joy is blooming infectious, and we all need a bit more of it right now.
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With enormous thanks and absolutely no handshakes or hugs or obligations.