Poor public understanding of autism is pushing autistic people and their families into isolation, in some cases leaving them feeling trapped in their own homes, a new survey has revealed.
In response, the National Autistic Society (NAS) has called for better understanding of autism, and has launched a new campaign to help the public to learn more about the condition.
The NAS’ report, Too Much Information: why the public needs to understand autism better, surveyed more than 7,000 autistic people, their family members and friends, and professionals and found some stark conclusions.
For example, 87% of families said people stare and 74% said people tut or make disapproving noises about behaviour associated with their child’s autism, while 84% of autistic people reported that others judge them as strange.
This is driving many autistic people and their families into social isolation: 79% of autistic people and 70% of family members feel socially isolated. In addition, 50% of autistic people and family members sometimes or often don’t go out because they’re worried about how people will react to their autism.
Yet awareness of autism is at an all-time high, with more than 99% of the public saying they’ve heard of it. But only 16% of parents and carers of autistic people told the NAS that the public understand how autism affects the way they may behave in public.
More than 1 in 100 people are on the autism spectrum. This means that someone sees, hears and feels the world in a different, often more intense, way to other people. Autistic people often find social situations difficult and struggle to filter out the sounds, smells, sights and information they experience, which means they feel overwhelmed by ‘too much information’ when out in public.
In response, the NAS has launched a new campaign, also called Too Much Information, to raise awareness of autism and what it means to have the condition. As part of this, the NAS has worked with autistic people to create 3 easy-to-remember tips for the public, asking them to remember ‘TMI’:
• Take time – sometimes autistic people need extra time to process information or to recover from becoming overloaded
• Make space – if autistic people become overloaded by the things around them, crowding will just make things worse. Step back or help them find somewhere quiet where they can relax
• Imagine – put yourself in the shoes of autistic people so you can try to understand what it’s like to be in a world where you’re bombarded with too much information.
Mark Lever, chief executive of the NAS, said: “Our research reveals shocking levels of isolation among autistic people and their families and indicates that hundreds of thousands of people feel so misunderstood that they sometimes can’t leave their homes. We will not accept a world where autistic people have to shut themselves away.
“It isn’t that the public sets out to be judgemental towards autistic people. They tell us that they want to be understanding but often just don’t ‘see’ the autism. They see a ‘strange’ man pacing back and forth in a shopping centre, or a ‘naughty’ girl having a tantrum on a bus, and don’t know how to respond.
“So, we’re launching our Too Much Information campaign to help everyone in the UK to learn a little bit more about autism.
“Autism is complex and autistic people and their families don’t expect or want people to be experts. But our research shows that when people recognise that someone is autistic, and understand the difficulties they face, they’re more likely to respond with empathy and understanding.
“A basic understanding could transform the lives of the more than 1 in 100 autistic people in the UK, and their families, allowing them to go to shops, the cinema, and work in the way other people take for granted.”
Jo Wincup and her autistic son Ben, 15, have almost grown used to strangers staring, tutting and making disapproving comments – but they also know how much difference it makes when someone does understand. “We’ve had to grow thick skins to cope over the years. But we’ve also seen the difference that public understanding can have,” said Jo.
“Four years ago, my son had a meltdown in a shopping centre, after becoming overloaded by the crowds, bright lights and smells. He started kicking me, shouting and swearing.
“We tried to get him outside to help him calm down but the people queuing for buses just stared, some even said really hurtful things. This upset Ben even more, he ran off into the bushes and refused to come out. I just wanted to cry, for the ground to swallow us up.
“Then I heard another voice from the crowds, saying something along the lines of 'what are you doing, do you not understand, have you not heard of autism?' The stranger made her way to us and knelt down before Ben. Remarkably, she managed to calm him down and helped us back to the car. I was so grateful that I was in floods of tears and wasn't really following what was going on but I remember her saying she worked with autistic children. Still in a daze, I thanked her and must have driven off. It's still one of my biggest regrets that I didn't ask for her name and stay in touch.”
Find out more about the NAS’ Too Much Information campaign and see the campaign film go to: www.autism.org.uk