Raising Jonah has been difficult, and perhaps the hardest part has been other people. When Jonah has a meltdown, and in his toddler years, these were frequent and epic, it was hard not to feel the acute sting of social judgement.
I felt the hot shame of embarrassment every time an incident happened in public, and they did so with monotonous regularity. I tried not to blame people for judging - as caring for him took its toll, my patience unravelled, too, and, at times, so did my parenting skills. I was depressed. Sometimes my self-control dissipated. I became withdrawn as social interactions became increasingly fraught and stressful.
Now I've had a chance to think about my feelings during that period, I've come to realise the reason I felt so judged was because I frequently judged others. Really, I felt that if people were calmer, more consistent, gave in less, and ensured their child had enough sleep, then they would have fewer problems with their children's behaviour. And yet, here was I doing all those supposedly ‘good’ things (as reliably as you can when you haven't had a good night's sleep in god knows how long), and my son's behaviour was spiralling out of control. It's hardly surprising I felt powerless and angry.
With Jonah, my reactions worked like a computer algorithm. If I got cross, his behaviour would get worse. Sometimes, on the odd occasion I shouted, he would appear to 'short circuit'. I remember losing it once when, as a toddler, he swiped a made-from-scratch meal off the table. The next week's meals were also eaten off the floor. Sometimes, it took the resolve of a saint to ignore regular bad behaviour.
We finally managed to get a diagnosis when Jonah was six, and it did much to alleviate my frustration. It absolved me from the judgement I felt I was under because my methods - routine, positive reinforcement, healthy food, plenty of sleep - which I truly believed in, weren't always as successful as I hoped.
Jonah is now a mostly charming nine-year-old, who takes the bus to school on his own in the morning, devours books, crafts impressive things in Minecraft and is top of his class in maths. At home, his behaviour, while not perfect, is pretty close. He engages with me before bedtime, remembers to say hello and goodbye, takes an interest in how my day has been and empties the dishwasher (although not always without a few grumbles).
But this comes with its own pitfalls. As his behaviour got ‘better’, I assumed I would feel more comfortable about his future - but actually, it's the opposite. Now I worry that a lot of people who don't know Jonah will struggle to see him as anything but normal. Which means, these days, he's often just labelled as ‘naughty’.
Over the past few terms, Jonah has increasingly been getting in trouble at school. A change to his routine can cause his behaviour to spiral, and his class are going through a raft of changes - new rules are being brought in, his teacher has left (along with the head) and he has had a steady flow of supply teachers. He finds it hard to interact with his peers, too, often talking ad nauseum about subjects that might not be all that interesting for the listener. He gets too close to people, and the conversation is often one sided. His bilateral coordination issues means he is not so great at football - but, where other kids are told “unlucky” by their peers if they fluff a pass, Jonah gets laughed at. He has not yet learned to ignore things he doesn't like, and he can give pretty spectacular reactions. Sometimes he sees red.
Jonah is being marked out as a troublemaker, and it bothers me. I see his frustration in the drawings he brings home - Jonah, drawn as a computer figure, armed to the teeth and battling his demons in pools of blood. These aren't the drawings of a happy child, I think. At nine, in his black and white logic, he has told me he would have preferred not to have been born, because he finds life so tough trying to be what others want. This is, understandably, hard for me to hear. I find myself worrying that perhaps I could have done more, and managed his behaviour differently when he was young. Sometimes, it's difficult not to feel like you're to blame.
But I try to remember to give myself a break - left to his own devices at home (and given time to do what he loves, too), he's a confident kid, who has learned to make working machines with circuits made from red stone on Minecraft, coding them with a circle of online friends with whom he interacts from the safety of Facetime and iMessenger. And I am proud of him - and proud of myself.
The real world isn't very understanding, though, and I worry about his future - what happens if he gets his wires crossed with a girl, refuses to sit an exam, or has a temper tantrum with his boss? In some ways, the more Jonah can “pass” as normal, the more likely it is that he will end up in trouble. I can think of countless social perils that await him. I will be there fighting his corner, just as I always have, in the knowledge that his behaviour can be entirely predictable, when he's given the right environment.
This is why Autism awareness is so important. Society needs to become kinder - not just to people with autism, but in understanding that all of us have challenges and our behaviour is often the result of a complex set of circumstances. But until the world understands that it is really is harder for him - to get the right end of the stick, deal with situations, smells, emotions, and conversations he finds uncomfortable - he will have to be ready to cope with whatever battles lie ahead.