By the time Sawyer started school, most of my anxieties were fuelled by a fear that he would be misunderstood.
He had not long since turned 4 years old when he went in to reception class, and had been verbal for only a few short weeks. Sawyer’s inability to keep still remained his overarching characteristic, and despite a significantly increased vocabulary, actual conversations were off the table, and an attention span of any kind was virtually non-existent. I remember being particularly worried that he would be unable to do something as simple as sit with the other children. I knew there was no hope of him joining for assembly, and little hope of him sitting on a carpet for story time. I was scared that Sawyer would be seen as disobedient, naughty and spiteful, when in fact he was simply unable to follow instructions, unable to stay still, and unable to distinguish between people and objects.
I used to think that once Sawyer had his label – his official diagnosis of autism – that his behaviour would make more sense to people, and that they would begin to understand. What I failed to comprehend was that many people simply don’t have a grasp on how autism affects individual children. And it was never anybody’s fault – why would you know, unless you had a reason to find out? Nonetheless, by the time Sawyer went in to his second year of school, there were many things I wanted to scream to world about his behaviour. I was desperate to explain that actually, that ‘tantrum’ that was a sensory meltdown. I wanted to show people that he was clever, despite the fact he was unable to tell you what he had for lunch. I wanted to explain that he was sensitive, even though he couldn’t express his emotions in a way that most people could recognise.
I suppose if I am completely honest with myself, my anxieties are still fuelled by a fear that Sawyer will be misunderstood, and it is partially why I decided to start writing this blog.
Writing is therapy to me. It always has been. At the darkest points of my life I have turned to writing to make sense of things, and I suppose as a way to take back control of situations I’d lost sight of. As I continued to write my blog posts I realised that not only were other people responding to my thoughts and feelings, but that I was actually processing many of them for the very first time myself. I began to understand things that hadn’t ever occurred to me before, and I slowly started to feel like it was all going to be okay. The more I wrote, the more people responded. Parents of children with additional needs started to feel part of a community – finally they didn’t feel alone anymore. Friends of mine who have known Sawyer since the day he was born began to understand what our life is like behind closed doors, and even our close family members started to get a better understanding of how Sawyer operates. Readers started to ask me questions, and I started asking questions in return. Suddenly, none of us were alone anymore. We were all joined together by autism. We were all joined together by Sawyer.
Recently I saw an article called ‘10 ways to help the parent of a child with autism’ and at first sight I knew I was going to have a hard time reading it. I have seen countless articles that detail in neat, numbered points, what people should and shouldn’t say to parents of autistic children, and that concept in itself makes no sense to me at all. How can those 10 neat and tidy points possibly apply to all parents of autistic children? My husband and I are parents of the same autistic child and even we aren’t affected in the same way by the same things. Why should we be? We have our own thoughts and emotions, our own way of brushing things under the carpet dealing with things, and our own way of communicating our needs with others. Similarly, I have friends who have autistic children, and they are far more sensitive about some related issues than I am, where I feel completely delicate about situations they don’t even consider more than once. I worry that those ‘what not to do’ articles only block communication, rather than encourage it. I would hate to think that people around me might feel nervous to have a conversation with me about Sawyer, or about the fact that he is autistic. I would rather that someone could approach me and ask me a question even at the risk of triggering my feelings, because I want us to have the opportunity to discuss it. Freely. Without a silent blacklist dictating where the conversation is allowed to go.
Autism is not a dirty word, and autistic isn’t a word we should quieten our voices for, and say beneath our breath. I am not ashamed of the fact my son is autistic, and I certainly don’t ever want him to be. So let’s be progressive, even though the current political climate is trying to make us take a step back. Let’s keep lowering the barriers of communication, and let’s give ourselves the opportunity to understand and empathise with each other, and more importantly than that, to give our children the opportunity to speak out too. If Sawyer is able to express himself as he grows older, then he stands a much better chance of forming good friendships, positive relationships, and surrounding himself with understanding people. Sawyer will never grow up to think that autism is taboo, or that his sensory issues are wrong. He will grow up knowing that he is autistic, and that he is loved FOR it, not despite it. As he gets older I will try to encourage him to rely on himself to ensure he is not misunderstood – to be able to tell people when he feels uncomfortable, and why. And to educate those around him about how autism affects him.
Six months ago I took Sawyer to the dentist, and she asked him if he could try to sit really still for her while she counted his teeth.
“I can’t sit still very easily” he said. “I have some autism!”
You tell them baby boy. You tell them.