Hustings 

by Tom Madders, Head of Campaigns

According to a YouGov poll from last year, 99% of people in the UK have heard of autism. This means that, more or less, we’re all aware of autism. ‘Autism Awareness’ has happened. We’ve won.

Except, of course we haven’t. We’re not even close. 87% of autistic people and their families still don’t think the public understand autism. That gulf between awareness and understanding remains enormous. And it’s my view that high levels of awareness mixed with low levels of understanding is pretty dangerous.

‘Awareness’ means you saw a film with an autistic savant character. ‘Awareness’ means you read a headline in the Mail about an autism epidemic. ‘Awareness’ means you heard about this autistic kid in your daughter’s class who bit the teacher.

Awareness means you think you understand – but you probably don’t. And the views of people who think they understand are a whole lot harder to shift than the views of people who know they don’t get it. For better or worse, that’s our starting point.

I’ve spent much of this year investigating this problem – and, at first, the research we conducted was causing me some confusion. We’d asked the autistic people and families participating to keep a log of recent incidents where they’d experienced difficulties dealing with members of the public. When participants arrived, many of the log sheets were sparsely populated to say the least. Some were blank.

My first thoughts were of relief that the public were better behaved than we’d realised. But also of concern – was The National Autistic Society gearing up to tackle a problem that didn’t really exist?

I was wrong on both counts: what was happening was far more shocking.

Our research participants weren’t encountering hostility simply because they’d learned to avoid it. They had learned to avoid the people and places that they know are going to be problematic: the supermarket where they were asked to ‘control your child’; the cinema they were asked to leave for being too noisy; the friends who won’t invite their children over any more.

One mum told us: “It’s like your world shrinks – we live in our autism bubble”.

No one should feel they have to stay at home because they’ll be judged just for being themselves in public. That’s why we need real autism understanding, so people stop seeing a strange man talking to himself in the park, or a naughty girl having a tantrum on a bus. They see autism. And they understand.

Our major public understanding campaign, launching next year, will be our biggest yet. It needs to be if we’re going to fix this – and I can’t wait to get started.