My son is sitting next to me as I type this. He is wearing a Thomas the Tank Engine top, holding his favourite Thomas the Tank Engine toy, whilst watching Thomas the Tank Engine tutorials on YouTube. For those of you unfamiliar with Thomas tutorials, basically they involve watching people open Thomas the Tank Engine toys and play with them in various ways, over and over again. Sawyer is mesmerized. If you are thinking that you have read the words Thomas the Tank Engine too many times for a paragraph this short, then you are currently viewing just a tiny glimpse of life as Sawyer’s Mummy. A world in which you hear the word Thomas well over 500 times a day.
Thomas has featured heavily in our lives since before Sawyer turned 2 years old. Our house became filled with all different types of Thomas paraphernalia – clothes, toys, towels, books, games, cups, plates, the list goes on. Now of course, it isn’t particularly unusual to find a boy of 2 years develop a fondness for Thomas the Tank Engine, so when his Thomas obsession began, we fully expected it to be a phase that would inevitably soon be overtaken by the next Big Thing. Sawyer will be turning 6 in July and Thomas features more heavily in our lives now than ever before. It is clear to us now that Thomas is more to Sawyer than just a fad; he is a constant in his life. He’s the thing that never changes, no matter how Sawyer is feeling or what challenges he has been faced with. Thomas the Tank Engine, for Sawyer and our family, is not just a passing phase, and we accept that wholeheartedly. Society, however, does not.
“Why don’t you give him some older toys to play with, he’ll soon forget about Thomas”. “He’s a bit old for that isn’t he?!”. “He’ll grow out of it”.
Growing out of it. I don’t think I had realised even until I typed that phrase out quite how badly it sits with me, and all the emotions I have tied up in it. With hindsight I knew there was something a bit different about Sawyer when he was 10 months old. As soon as he could cruise the furniture he became unstoppable to an extent that I somehow knew just wasn’t quite normal. “That’s just his age”, they said. When he was a little bit older and could walk, we couldn’t take him to parks unless they were completely gated because he didn’t play on the apparatus like other children his age – he simply ran. “All boys are like that”, they said. His third birthday was spent at a local softplay centre and instead of playing with friends he took his Thomas toy in to the ball pit and lost him, resulting in a meltdown of epic proportions and having to leave early. “He’ll grow out of it”, they said.
I think it’s important for me to say that I completely acknowledge that these phrases and ‘reassurances’ don’t come from a place of hate. I completely accept that people use these words to make me feel better about a situation I can’t control. Before Sawyer’s ASD diagnosis these words were used to try and reassure me that he was ‘normal’ and that I shouldn’t worry about him. And since diagnosis the words and phrases are used to try and reassure me that he ‘doesn’t seem autistic’ and that he will probably grow up to be completely normal. It’s amazing how many people suddenly choose to tell you about their Autistic cousin who was diagnosed with Asperger’s and has grown up to be a very successful something or other. And of course I’m bloody happy for them, because clearly that is what I hope for Sawyer. Yet telling me about said cousin is just not helpful to me, because I don’t need Sawyer to be normal in the way that other people seem to. I need him to be Sawyer, and for other people to just accept him as he is.
Being a Mum of a highly functioning Autistic child is challenging for many reasons. When we finally got Sawyer’s diagnosis he had just turned 3, and after struggling through the system for so long, was actually a relief. I already knew he had Autism, so I wasn’t sad. If anything, I felt like somebody had finally told me that I wasn’t imagining it. I was happy. Sawyer would always be Sawyer but suddenly I had a piece of paper explaining that he just doesn’t view the world the same way other people do. We finally had a diagnosis that explained why Sawyer sometimes called (still does) his Aunts and Uncles by the wrong name, and why he rubbed his forehead on the carpet when he was tired. I thought that the diagnosis would help people to understand Sawyer’s condition and make allowances for some of his strange behaviour. I was wrong.
Society wants my son to be normal, or abnormal. Society wants Sawyer to fit in to the Autism box a little bit more neatly. I mean come on, Sawyer, for Gods sake be a little bit weirder for the audience if you please!! I still have other parents in the playground insisting that his strange traits are just the same as their ‘normal’ child. I’m still ‘reassured’ that he will grow out of his Thomas obsession, and that I shouldn’t worry because he doesn’t seem Autistic. Even teachers make me feel like I’m imagining his Autism because he’s a well-behaved boy who isn’t underachieving. What I actually want is for people to accept Sawyer and his unusual mannerisms, and love him for them. I want people to accept that actually, he IS different and he DOES seem a bit weird, and he DOES need some allowances to be made. He DOES need just a little bit more help to understand the world, and he DOES need you to help him stay calm (even if that means carrying a Thomas toy in to the swimming pool).
Sometimes I wish that Sawyer’s anxieties and struggles manifested in ways that were more obvious to the naked eye, so that finally the people around us would accept that Sawyer is and always will be, just a little bit different. Sawyer needs to be allowed to be Autistic. He won’t magically grow out of Autism and it wont go away if we don’t look at it directly in the eye (Sawyer couldn’t anyway!).
To me, pretending my Autistic child isn’t Autistic is like pretending a disabled child doesn’t need a wheelchair. Sawyer needs a little bit of extra help and someone to fight his corner. Lucky for him, I’m just warming up.