THIS MUCH I KNOW
JAI BREITNAUER wasn’t surprised when her son Isaac was diagnosed with autism spectrum disorder. She talks about what a character her son is, and the colour that autism has brought into her life
Mum Jai shares her family’s journey with autism
As a new mum you spend a lot of time focussing on the milestones – and Isaac hit each one with speed and accuracy. First smile (at me pulling faces) at three weeks; first word (daddy) at nine months; first steps (in a café to get my cake) at 11 months. We revelled in those small triumphs, but in the background was a niggle. Isaac ticked all the boxes but there was something else going on too, and we couldn’t put our finger on it. Our washing machine, in our tiny terrace house in the UK, was under the stairs and Isaac would sit in his baby bouncer for a full cycle, just watching the washing spinning round. He would spend hours connecting things together, lining up boxes, cars, toy trains, you name it. And, although he had a healthy appetite and sweet tooth (cake was his second word) he never told us if he was hungry or thirsty, or even tired. It was like he didn’t really know until the options were on top of him. He fascinated me. As his speech developed, something very bizarre happened. He took on a very formal way of speaking, using words quite complicated for his age, and designed his own vocabulary around one central truth – that he was a steam train. At first, he called himself Thomas and we said, “Oh, well, he loves Thomas and Friends!” But later, the interest in Thomas the Tank Engine wore off, and other trains took over. For a long time, he would only answer to the name “Portbury” – a heritage steam engine we used to ride on. You might say that all kids have favourite things, and might pretend to be princesses, superheros or even villains from their favourite books and TV shows. But this was more. It was like he believed so completely he was a steam engine, you couldn’t break him out of it. I didn’t ask him what he wanted for dinner, I had to ask him, “What coal would you like in your boiler?” We didn’t walk to the shops, we ‘choo-chooed to the station’. Once, I picked him up from kindy and they told me he’d fallen backwards off a bench while eating a tomato. He said, “Mummy, I slipped off the station while filling up with coal, and bumped my boiler on the tracks.” He was two years old. This behaviour had huge upsides. For example, I could trust him implicitly when we went out – always dressed in a train bib with a station-master’s hat – because he walked in a dead straight line (on
Spending time with Isaac can feel like spending time with a classroom of children – but they’re some of the most intelligent and talented children you’ll ever meet, so why would we want that to change?
the tracks) and always stopped at the road (level crossings or lights). But it caused problems as well. Once the kindy called to say he had pushed a girl and screamed in her face. When we spoke to him we discovered he’d been ‘buffering up’ and sounding his whistle. Out in public too, while most people thought he was quite cute, some pedestrians got annoyed when he ‘peep-peeped’ behind them instead of saying excuse me. By the time Isaac was three he could draw a steam train accurately, in six different 3D perspectives and name every part of the engine. We thought this was both brilliant, and a little bit scary, so we began to seek advice from medical specialists. Eventually we were given a diagnosis – high functioning autism spectrum disorder, or what many people know as Aspergers syndrome. Now, if I said I didn’t cry when I got the diagnosis, I’d be lying. My husband Noah and I both blubbed – but not for long. A diagnosis meant we could begin to learn more about our beautiful boy, and understand him. We loved him dearly but he was, in many ways, a mystery to us. It also meant he could get the help he might need at kindy and later on at school, and in all honesty, it’s much easier to say to people, “He’s on the autism spectrum,” than it is to say, “He just really, really loves trains,” when they need a reason for his slightly odd behaviour. An autism diagnosis was, for us, a door opening and autism has taken us to some very exciting and interesting places. Apart from being steam train nerds – I mean, experts, we also know a lot about space. The questions our boy asks us about space exploration, time travel and other planets – and his level of understanding when he answers – are well beyond his years. Isaac is also a real adventure seeker, having been parasailing with his dad, learned to ski like a pro, rock climb and currently he’s learning guitar. Once he becomes invested in something, Isaac seems to have no limitations on his achievements. We will also never need to buy artwork or sculptures. The output from ‘the making area’ is so extensive, that it now warrants an entire room of its own with special drawers for all the different things – pipecleaners, googly eyes, glitter – he might need while creating. It’s magic to watch, especially when he dons his ‘lab jacket’ and glasses. It is true that autism is challenging. It can cause worry and stress. You make Isaac a cup of tea in the wrong mug, or forget to lay some clean socks out for him, and you know all about it. He’s a very particular young lad and that can sometimes stand in the way of making friends or feeling satisfied. But the incredible creativity, excitement and joy that comes with those challenges is worth the payoff. Spending time with Isaac can feel like spending time with a classroom of children – but they’re some of the most intelligent and talented children you’ll ever meet, so why would we want that to change? Our house is chaos – loud, messy, busy and wild, but never, ever dull, which is exactly what I dreamed parenting would be.
Jai and husband Noah discovered early on that son Isaac’s special interests made him stand out.
Isaac clockwise from left: His love of trains developed early on. Riding high with mum. A beaming guest of honour at his parents’ wedding.