Thanks to my children’s total openness about their autism they are able to constantly share some fascinating insights into how their brains work. Several recent conversations with them have thrown up some new, intriguing facets to how their brains differ from ours and just how incredibly difficult it must be to live with.
I’ll share a couple of examples with you which may enable all of us who live our lives alongside people on the spectrum to better understand the daily struggles they face.
Osborn was talking to me in the kitchen a couple of days ago and told me that he woke up one morning and decided to count how many steps he took that day. He can’t remember what prompted this but I would imagine he’d heard something about the ten thousand steps a day philosophy for keeping fit? Anyway, he decided to count his steps in multiples of 20 and tally them as the day went on. He was able to do this all in his head whilst still carrying on with his school work and everything else his day entailed.
He could, of course, have used a pedometer but probably didn’t think of that or more likely knowing Osborn, felt that a pedometer wouldn’t be accurate enough. All was fine but the next morning he decided he must do the same again that day….and the next…and the next…and the next etc…. he admits to the whole process becoming exhausting but it was fixated in his brain by this point and he couldn’t stop himself. He worked on various strategies to stop himself doing it and eventually found that if he stared at his feet all day he could control the counting. We did notice that he started looking at his feet when walking and did ask him why but at the time his only response was very matter of fact, ” I have to”. This was a few years ago but it only came out two days ago that it took him a whole year to overcome the compulsion to count his steps.
Lorie, who was there at the time, then told us about a similar situation she found herself in for years. Whenever she saw a word she would have to calculate the numbers related to the letters, add them up in her head, then add those number together etc…etc…She did this for years when she was young and she agreed with Osborn that the process was exhausting but she couldn’t stop herself.
All of the above sounds like classic OCD, and to an extent it is, but autistic peoples brains have a very OCD element to them. It’s why they instigate elaborate rituals into their lives as a kind of security blanket. However, imagine having to live constantly with these complicated mind games. It’s no wonder their stress levels are through the roof. There can also be numerous complex compulsions battling at any one time for brain space all of which HAVE to be followed through.
I know what it’s like to live with a brain that never rests as mine never, ever switches off but add to that all of the above and I believe that they actually cope incredibly well with the complexity of how their brains are wired. I have the greatest respect for these amazing people who mostly appear to have photographic memories to a greater or lesser degree. A talent I envy!
As research uncovers more and more about these genuinely incredible people my fascination with the subject increases and the more my own children are able to share, the greater my insight into how well they do to manage their daily lives as well as they do. Let’s all try harder to understand how debilitating having a brain that is constantly on overdrive must be and added to that the lack of sleep a lot of them have to cope with as a result. They all admit to often being in a state of physical exhaustion because of the constancy of their brains activity.
Hopefully, understanding this one little point gives us a better chance of being patient with our ‘auti’ people !! Hats off to them all!!