Of course I love my autistic son – but sometimes it’s easier to leave him at home
It’s no exaggeration to say that having an autistic child has changed the dynamic of our family completely – in the words of a friend whose son is also autistic: “It can be a pain in the a***.”
We are always only moments away from a potential meltdown and permanently on high alert. The slightest thing – a queue into the car park; a café not having his favourite sandwich; a friend cancelling at the last minute – can set him off. Whereas “neurotypical” children, including our other two, would take these sorts of setbacks in their stride, a “neurodiverse” boy like Rory would be completely thrown.
We can’t do anything spontaneous. I have to show Rory, who is eight, pictures of where we are going beforehand and talk him through the day’s plans in detail so he knows what to expect.
Despite the fact he is very sensitive and thoughtful at times, he doesn’t have any sort of filter – which can make going anywhere rather fraught. He still hasn’t grasped the need to whisper at the cinema, for example. And saying: “I hate this place; it’s so boring. When can we go?” at full volume at the local museum/ café/friend’s house doesn’t exactly endear us to other families.
He cannot manage after-school clubs and hates sport, while play dates are very limited. He also has a very keen sense of fairness, so if his brother or sister has a friend over, he quite rightly wants to invite someone over too. But the fact he mainly talks about one topic at length – known as a “special interest” – makes it harder for him to make friends and he rarely gets asked back anywhere, which I find heartbreaking.
Unlike our other two children (one younger, one older), he cannot tolerate crowds or loud noise and hates going to new places.
At school, he wears noise cancelling headphones in assembly, but due to his prescriptive way of thinking about things, he now refuses to wear them anywhere else. The last time we tried to go and see a show in the West End he got very upset and demanded to leave half an hour in as the loud singing got too much. My husband took him home while I stayed with our other two children. The stares of disapproval from other families were crushing. The next time, I took him to an autism-friendly screening with just the two of us while the other two were at school.
Last August, for the first time, when we went to a family music festival I decided to leave Rory with my father. He is still at an age where he considers a night with Grandpa to be a treat and didn’t mind missing out.
As I looked over the crowd of swaying bodies clutching pints of cider in their hands and moving to the music, I sighed with contentment. A music festival, especially after almost two years of Covid confinement, is my idea of heaven, but for my son it’s more akin to a nightmare.
Our other two children are both pretty sociable and outgoing. They, like me, love exploring new places, going to parks, restaurants and, best of all, festivals. So having a child who hates these sorts of things can be very difficult at times.
Obviously I love all three of my children. I wouldn’t change anything about Rory, but I realised that day that sometimes the kindest thing for all of us is for him to do his own thing and for the rest of us to do ours.
Him saying, ‘I hate this place, it’s so boring… When can we go?’ at full volume doesn’t endear us to other families