Living with autism in London

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Every morning James Sinclair arrives at his office two hours early. Every night he leaves two hours late. The 25-year-old digital marketer commutes from Streatham to Trafalgar Square, and like many Londoners he’s keen to miss the rush hour crush. But for James, avoiding crowds isn’t a preference – it’s a necessity. Bumping into someone on the Tube today could leave him struggling to get out of bed tomorrow. This is just one detail of life with autism in the capital city.

Each autistic person is different. Though it’s often described as a spectrum, James says it’s best to think of autism like a colour wheel – everyone has their own mix of traits. According to the National Autistic Society, there are five main characteristics: social anxiety; struggles with unexpected change; sensory overload; increased processing time; and meltdowns.

“I don’t think most people see the small elements with autism,” says James. “They get that you have meltdowns, or the genius like on TV. People finally understand that there’s positives and it’s just a different way of living – but I don’t think they see the whole spectrum.”

Living in London adds its own challenges to that spectrum – loud, crowded and fast-paced, the city seems like the worst imaginable place for autistic people. But with 88,000 living in the capital, the reality is more complex.

Leo Capella is 33 years old and autistic. He grew up in Islington and recently moved to Stratford. Like James, he works full-time – in his case, as an autism access specialist. Leo loves the Tube, rock concerts, and going to night clubs. “Yes, we are in the places you’d expect us to be,” he explains. “But we’re also in the places you’d least expect us to be, for better or worse.”

Sometimes it’s for worse. On London’s busy streets, sites, sounds and smells compete for space, creating sensory overload. Harsh realities can press in on autistic people more than most. “We have a strong sense of justice and we’re hyper aware of our surroundings,” James explains. “In the capital, you’re always hearing about crime or poverty. As bad as it is, when a lot of people are on the Underground and a homeless man comes past they put on their headphones and turn off. I can’t stop looking at it.”

James used to live in Manchester, a city of almost half a million people – but London is different, its problems unavoidable. Leo agrees: though anonymity can be a relief after more than a decade in a rural village he says, there’s no denying the intensity of the city. “In a sense it comes with the territory of what London is,” he admits.

So what can be done to make London more autism friendly? Last month, the National Autistic Society called for specialist support in councils across the country, and more government funding for social care and a public awareness campaign. A recent report from the London Assembly Conservatives focused on what the Mayor could do here in the capital – mandatory awareness training for police, fire fighters and TfL staff, and a London-wide autism strategy, bringing together health workers, councils, charities and businesses.

There could be subtle changes to the shape of the city too – in public spaces, better acoustics, shielded lighting, and quiet rooms or alcoves for a moment of retreat can all help autistic people. A map of calm spaces could help to navigate London as it is.

James sees small changes like this making a real difference. “I don’t think we need to make the whole of London an autism paradise,” he says. “It would be a nightmare for everyone else.”

And it’s not just about policies. “You can teach a member of staff a lot about autism but if you teach everyone else a tiny bit, that small nugget in the back of their head would do way more,” he adds. “As a community we don’t want people to see us as ruining the fun for everyone else. We just want people to know that if we are struggling it’s not our fault.”

Knowing how to help is important. For Leo, it’s about two key questions: can I help? and, if so how? “With autism in any city, whether it’s London, Sheffield or even Nottingham, it’s about the kindness of strangers,” he says. “A sympathetic person in a newsagent who has that basic understanding can make just as much difference as a doctor or an employer.”

Kindness might be as simple as noticing someone. It could be reserving judgement. It could be listening to what autism means to different people. For James, that’s the key. “The one thing I wish people were aware of – and it sounds really preachy – is there’s other people out there with their own problems,” he says. “Sometimes problems are big, but to autistic people it’s probably a small thing. It’s not just the problems you have, but how you interpret them that matters. Try to look at it through their eyes.”

Above all, kindness is about trying to understand. As Leo says: “Half the time I’m almost begging, ‘I’m autistic, do not be alarmed’. I may act a bit strangely but I’m harmless. I’m just trying to get on my way and be like everyone else.