Today is April 2nd which is also known as World Autism Awareness Day. I didn’t realise until very recently how conflicted I feel about it or how many emotions it stirs up for me. Thurston was diagnosed as being severely Autistic in March 2010 when he was 21 months old. We did not push for the diagnosis or suspect that he had Autism. Thurston had a range of special needs, the most concerning being a feeding disorder and he was severely delayed in meeting all of his gross motor and fine motor skills milestones. Autism was never something that had crossed our minds. We walked into a multi-disciplinary appointment and walked out an hour later with a diagnosis.
The day itself falls on April 2nd and so the month following Thurston’s diagnosis was filled with articles and documentaries everywhere about Autism. It was overwhelming and terrifying, and just plain bad timing. I felt obligated to sit through some of these documentaries to inform myself as a responsible parent for what was to come. The first one was about older autistic children and the one that stuck in my mind involved a child who was obsessed with poo, and smeared faeces on any surface he could find. All I could think was that this was my future and I needed to get used to it! The other documentary I remember was the Louis Theroux piece about over-medicating kids with ASD in America. It was piercingly sad and the message was so negative. I was overly saturated with information that I now realise was very specific individual stories and actually had no relevance to us at all.
In some ways I consider Thurston to be very lucky because he has no awareness of himself which makes life as an Autistic person much more straightforward. He has no clue that he is any different to anyone else and therefore he has the same dreams and aspirations as anyone would expect from a 6 year old boy. This is something I’m keen to reinforce with him and although I have to explain to his siblings sometimes that he needs different care to them, he is never aware that he is anything other than one of the kids, same as Louis, Indigo and Zeke.
To this day, it still gives me a knot in the pit of my stomach to read or watch anything relating to ASD. I don’t consider it to be relevant to me as I only know Thurston and I can only do what’s best for him. Sometimes these things spring up on me when I’m not expecting them though. I recently went to see Simon Amstell’s “To Be Free” show which included a huge piece about his visit to an Autistic school and how he felt about that. For the first time, I felt like someone had vocalised the way that I feel about Thurston’s condition. He said that he felt there was a pure freedom in Autism, that these children are unrestrained by society’s norms and conventions, and that they just do whatever feels good for them in that moment. Simon Amstell suggested that it is other people who cause the stress and anxiety around Autism by trying to make people fit into the rules and regulations that we would expect. Obviously, this view is simplified and utopian, however, it was the closest perspective to my own philosophy on Autism that I have heard. For the most part, I want Thurston to do whatever makes him feel good, as long as it isn’t a danger to others. Of course, I have to stop him if the thing he wants to do is splash in a puddle in front of oncoming traffic or throw a puppy at his brother.
Currently, Thurston identifies himself as Barry Hedges. Barry is a lovely guy who tidies up, plays with his little sister and eats his dinner. It is a constant source of amusement for us that Thurston’s idea of role play is to invent a character who is completely average. That’s obviously a fantasy to him! His school has been so pleased with the work ‘Barry’ has been doing and he has been a complete joy at home!
Another thing that really excites Thurston/Barry and makes him feel good is music. He likes to play music on the guitar and is actually a natural with it. We must teach him some technical stuff soon because I really think he might have a talent for it. He creates his own songs, his most recent being “italian men, italian ladies, they have all the feelings”. He also loves to sing along to his favourite music loudly and it’s surprisingly in tune! His current favourites are both Sleater-Kinney songs; Price Tag and Oh!, which he sings on the way home from school every day.
So every year when World Autism Awareness Day rolls around, I am filled with all these feelings. There are the memories of fear and grief from that first year where we had a name for what was wrong with him. Yet with every year, I am filled with more and more pride for what an incredible free spirit he has become. Thurston is so much more than just autistic; he is bright, hilarious, rude, bossy, loud, beautiful, book loving, kind, musical, thoughtful, and above all, a massive pain in the arse! I love him.
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