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One of the most difficult things about autism is the judgment of other people. That has been my experience of having a son on the spectrum. Throughout his life, from trips to the park as a toddler to restaurant visits now as an 11-year-old, it has been the reactions of strangers that have really hurt. Sometimes Zac finds social situations very difficult. If things are noisy, if there is something he wants that he can’t have, he finds it tough to process those emotions. He may cry, he may become angry, he may have what is commonly termed “a complete meltdown”. As parents, my wife and I have developed ways to foresee and manage these situations, but if we are in a public place, or if my son is with other adults, everything becomes far more fraught and complicated. You get used to the disapproving looks. You get used to being judged.
Because autism is now such a huge part of my life, when I first encountered the National Autistic Society’s Pledges initiative, which offers neurotypical people 18 ways to alter their behaviour in order to help friends and colleagues on the spectrum, they seemed really obvious. Making firm arrangements and sticking to them, giving people time to process information, and taking an interest in the things they like are vital elements of being a parent to my son. And to be honest, they also sound like good ways to behave in general, whoever you are speaking to. But when I watch people interact with Zac – in shops, at children’s parties, in the park – they often fall short. I have seen parents get angry with him when he didn’t understand pass-the-parcel, or when he kept picking up and keeping the ball during a game of football – even after I have explained that he has autism and the rules of social games can be incomprehensible to him.
I have come to understand over the past decade that empathy is a learned skill – the ability to understand the viewpoint of another human being is not natural for a lot of people – so the NAS pledges, which are based around taking a few moments to assess the fear or discomfort of another person, are very valuable. Making sure there is a quiet space at parties, making sure you keep to plans, making sure you offer help to someone who looks confused rather than gawping at them really are things that we have to think about; they don’t come naturally to a lot of us.
There are several moments in my novel A Boy Made of Blocks – which is about the relationship between a father, Alex, and his autistic son Sam – that have come directly out of my own experience with other people reacting to Zac. There is a moment early on when Sam is scared by a dog in the park, which has been let off its lead and charges at him. Terrified, he runs to his dad, and the dog’s owner is visibly annoyed at the child’s perceived cowardice and over-reaction. I have since spoken to a lot of parents of autistic people who have had similar experiences: that combination of thoughtlessness followed by defensive anger; that sense that the child is not living up to expected behavioural norms. It is heart-breaking to see.
When I talked to Zac about the NAS pledges and asked what he wanted the world to be like to make it easier for him, he just said “the beach”. I laughed at first, but it makes a lot of sense. Zac loves water and finds swimming very calming (a lot of children on the spectrum do, apparently), and we tend to go to the beach on holidays or at weekends so it is relaxing for him. But it is not just that. He likes the beach because it is a peaceful permissive space – people act differently there. People are generally calm, they are relaxed; they give each other space and respect boundaries, but there is also more of an open, sociable mood. Collective play is a bit more welcoming when it revolves around buckets, spades and beach balls. We go to the beach as much as we can because of all this. I genuinely think the world would be a better place if we behaved in every public space how we do on the beach. Obviously, I am not advocating swimwear in the office – that would be really awkward – I just mean that sense of benevolent calm that the beach fosters would be a healthy way to live. Maybe they should pipe the sound of breaking waves into shopping malls, waiting rooms and airport departure lounges. Actually, Gatwick airport currently has a sensual exhibition along its Skybridge which leads to the airplane gates – there are speakers playing sounds from around the the Yangtze River in China, including rain falling onto the water. It’s actually very beautiful and calming.
Right now, we are just grateful for any moments of understanding and kindness from other people. We are pathetically grateful when the staff don’t stare at Zac when he has a meltdown in a shop; we are pathetically grateful when another parent asks if Zac wants to go round and play with their child, and checks what food he likes and what specific things make him comfortable – and uncomfortable. We often eat together as a family at the local Beefeater restaurant in Frome, not because we are fans of 1970s dining chains, but because the staff there treat Zac so well. They remember that he likes a bag of crisps for his starter, and he likes beans on toast (on plain white bread), and they serve it with no fuss, no weird looks. They treat him like a customer rather than a problem. We are pathetically grateful for that.
I read through the Pledges with Zac and he nodded along. They all made sense to him. He, too, felt that they seemed obvious, but then he appears to quickly forget moments when adults have made him feel stupid or weird. I asked if there was anything he wanted to add, if there was a simple message he would add. He thought for a second and just said: “Be nice.” That’s really it, I think: amid the intensity of modern life; amid the bustle of city streets and crowded shops; amid the sheer intensity of existence in the 21st century, it is incredibly worthwhile to notice other people, to see people who may be struggling and to make an effort to help, or even just make a space where they can help themselves. I just feel that empathy is a skill we all have to spend time learning. A better world for people on the autistic spectrum is a better world for us all.