The BBC series, The A Word, about an autistic young man called Joe, has led to a lot of questions from friends of ours.
"Why did he do that, Ann?"
Joe is, of course, a fictional character, so there is no one answer that is certain to be true. But, in Joe, I recognised so much of my own childhood, and learning styles.
Let's have a look at some of things we saw in the series:
Joe and his music. We learn that Joe is nearly always listening to music, often through headphones. He sings along to the songs, word-perfect.
Two main possibilities here. Firstly, headphones cut out most of the background noise. Many autistic people have brains that take in every bit of background noise, and cannot filter it out. The recent National Autistic Society short film shows a bit of our sensory world http://www.autism.org.uk/get-involved/tmi/film.aspx You'll need the sound turned up.
Secondly, going back to my own childhood, I learned words through music and musicals. One of my first words was 'supercalafragalisticexpealidocious'. I had listened over and over to the musical, and I could detect words that were sung. Somehow the 'music channel' in my brain was working, but the usual speech-channel was not. It was a huge and painful struggle to say spoken words. I could sing some, though. We can see some good research happening around this. It won't apply to all autistic children. We all have our own way of accessing the world.
Joe focusing through a ring-pull off a can, to look at a landscape. Many of us have brains that take in huge amounts of visual information at once. Having some way to focus on just a part of it...perhaps through looking at just one part at a time - well, that can really help.
Joe and the shutdown on the floor at the party. Lots of people who were astonished that we didn't see a 'proper meltdown like real autistic people have'. 70% of autistic people report that it's usual to 'shut down', not have a 'meltdown'. Both are brain events, not a temper tantrum. Brain wiring that overheats from too much social input at parties, for example...well, it can either get an electrical storm which causes wild erratic behaviour (meltdown), or it can switch itself off to allow brain cooling (shutdown). He was starting to go into emergency brain-cooling. Onto the mat, where he could feel where his body was. Knowing where we are in a space, in a room filled with fast moving noisy people...well, it's very hard. Having physical pressure on our bodies can help us at least know where we are. He knew where he was; on the floor. Phew. But unable to speak or interact with the others. It's a horrible, scary feeling when it starts to happen. Parties are not a good sensory environment from brains that take in too much information. They are often the ambition of parents, not the child.
Most autistic children do not 'look autistic'. It is not about meltdowns, for a good number. And those are, arguably, the children most at risk of being missed from diagnosis and support. The quiet ones who appear to be 'coping'. We're not. We're often terrified, but can't show it.
Joe and the running away. He'd been taken to a party filled with cooking smells, noise, social interaction. Then his grandfather took him to a strange house and left him with people he didn't know. Yikes. His brain must have been on absolute painful superheat of anxiety and overload. No wonder he did a sensible thing and took himself off to somewhere safe, away from this weird family doing painful scary things.
Joe and the lift service in the mornings. He takes himself for a walk. Each morning, a van drives up the road and gives him a lift back again. In one scene, we see how unfocussed that scene looks to Joe. He has no idea who the people are. So many of us are faceblind; unable to recognise who is who from their faces. We have to learn to trust 'total strangers' all the time....and of course, many then have scary experiences and learn not to trust anyone at all as a result.
Joe's behaviour makes wonderful sense to me, as an autistic adult. So beautifully played by the young actor, Max Vento. Very much hoping there will be a series 2 along soon.