Meeting Me

Being in lockdown for well over a month has given me the chance to do many different things. I have been learning sign language, something I have been meaning to do for years and finally have the time and the attention span to deal with.

Sign language is great, so many of the signs are exactly what you think. Hello is a wave, good is thumbs up and anyone who has attended a kid’s party could correctly guess what monkey and lion would be.

Also, I have drunk nothing but water for the whole of April and it has made no difference at all. I keep hearing stories of virtuous people whose lives have been changed by the power of the H20 diet, but my energy, sleep and general wellbeing remain unchanged. I find this reassuring as water is so dull, I am quite pleased. What has been more interesting is what have learned about autistic me.

Firstly, the concept of ‘now’, ‘next’ and ‘future’. I need a task to do ‘now’, the thing at the top of the list. I cannot have a time where there is nothing to do, even if it is something really small like getting a drink. Then I need a ‘next’ task, what I will do after the ‘now’ thing is done. I find it extremely hard to change these two things once they are decided, anything else will need to wait until the ‘now’ and ‘next’ are completed. Everything else is ‘future’, this is a massively flexible jumble of stuff, sometimes as lists other times just floating around my brain. The most urgent of the ‘future’ tasks will be promoted into the ‘next’ space but never into ‘now’.

Secondly, ‘spoons’ and ‘stims’. I didn’t really understand this is so widely used in the autistic community, but it is a way of self-measuring. Spoons are energy, making sure there is enough energy to complete whatever tasks need doing, knowing what I can cope with. Too much sensory input can lead me to run out of spoons and shutdown. Stims are the repetitive movements I do, foot tapping, playing with bits of Sellotape or stroking my neck are three classics for me. The more stressed I get, the more I stim. I hadn’t known this was a classic autistic trait until this week and it has been so interesting to learn more about myself.

There are so many things I still want to do before the end of lockdown. Now, I can do anything I plan for, I am completely self-contained, there is nothing from the outside trying to change my ‘now’ and ‘next’. I don’t want to shout it too loud but I am very happy right now.

Not so Dyer

“I know today’s been strange, everyone asking you things, I’ve got some good news, well you know all those doctors asking you questions, they told us you’ve got a special power, and there is a special word for it, autism”

This is a quote from an episode of EastEnders broadcast on Thursday 14th November which I must have watched that clip at least a dozen times.

It was a Dad talking to his child about a something that I never recall being discussed in such a mainstream way. During the last few years people with autism have replaced ‘dangerous loner’ as the new boogieman and it being described as having a ‘superpower’ to the millions of soap viewers feels like a watershed moment. I can’t imagine how different my life would have been if this had happened twenty years ago and somebody described me as having a superpower.

               As an autistic man in his late 30s, I am not sure how much I can relate to the term ‘superpower’ but have heard it used before and can understand how for kids must be amazing.

               The National Autistic Society writes

  • ‘Autistic people have a unique and individual view of the world which lots of people who aren’t autistic can find interesting, refreshing and valuable’
  • ‘Autistic people have distinctive vision and are able to notice detail others would miss. They also have a strong drive towards finding explanations’
  • ‘Autistic people are likely to better remember information, routine or processes that they have learned’

Perhaps these things could be considered superpowers, I am often complimented on my research and organisation, and I think these might be more useful in the real world than some powers the heroes Marvel invent.

I really hope this is the start of a campaign of understanding that autism doesn’t have to be a negative and that people like me can not only contribute to society but enhance it.

Better For Greta

The internet tells me of many people in the public eye who may have been autistic

  • Isaac Newton
  • Stanley Kubrick
  • Steve Jobs
  • Albert Einstein

However, this week we have all been following the adventures of another autistic person, Greta Thunberg.

To be clear, I have no connection with Greta, or anyone in her circle but I have been struck by the vitriol of the commentary around her recent speeches.

This morning Michael Knowles, a journalist from US website ‘Daily Wire’ during a live TV appearance, described Ms Thunberg as a ‘mentally ill Swedish child’. A couple of weeks ago Australian newspaper Herald Sun columnist Andrew Bolt wrote she was ‘deeply disturbed’.

Regardless of the opinions of the lady involved, it strikes me, as a fellow autistic person that Greta’s views are being undermined by people who misunderstand her ‘condition’.

According to an article in the Guardian ‘She said she had not been open about her diagnosis of being on the autism spectrum in order to “hide” behind it, but because she knew “many ignorant people still see it as an ‘illness’, or something negative. When haters go after your looks and differences, it means they have nowhere left to go. And then you know you’re winning!” she wrote, using the hashtag #aspiepower.’

One in 69 people are estimated to be on the autistic spectrum yet often we are looked on as mad or dangerous. According to the National Autistic Society, autism is a ‘lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them’.

Something I have seen a few times in the commentary around Thunberg is that people must be taking advantage of her or she is being manipulated. As I am unable to speak for any autistic person other than myself but having spent a lot of time researching since my diagnosis, it seems clear that autistic people are very hard to manipulate. We see things as either black or white, we don’t notice the emotions of others and are very good at research. We form firm opinions and stick to them. We don’t take directions easily, we do what we want to do.

Going back to the National Autistic Society ‘Many autistic people have intense and highly-focused interests, often from a fairly young age. These can change over time or be lifelong. It can be art, music, trains, computers, car registration numbers, bus or train timetables, postcodes, table tennis, traffic lights, numbers, shapes or body parts such as feet or elbows. For many younger children it’s Thomas the Tank Engine, dinosaurs or particular cartoon characters. Autistic people might also become attached to objects (or parts of objects), such as toys, figurines or model cars – or more unusual objects like milk bottle tops, stones or shoes. An interest in collecting is also quite common’

It may well be that for Greta Thunberg, her ‘highly focused interest’ is the environment. She has probably spent huge amounts of time researching the topic and, as such, is very capable of presenting her research.

Personally, I have no problem with people disagreeing with her points or not liking her cause but to make out that Greta is not in control because she is autistic is a fundamental misunderstanding of what autism is.

We are now 10 years after the implementation of the autism act and a recent review found there is ‘not enough understanding, not enough services, not enough progress’. I couldn’t agree more.