Living with autism: Too Much Information

Toomuchinformationweb

Jenny Paterson introduces the Too Much Information campaign which aims to build awareness of what it's actually like to live with autism

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1st April 2016 by TFN Guest 1 Comment

There is a big difference between awareness and understanding. A massive 99.5% of people in Scotland have heard of autism – we know the A word – but just 15% of people living with the condition believe it is understood in a meaningful way.

This is causing huge problems for the 230,000 people in Scotland who are affected by autism. And it’s why The National Autistic Society Scotland is marking World Autism Awareness Week (2-9 April) by launching Too Much Information, a three-year public understanding campaign.

Almost half of autistic people told us that they sometimes don’t go out because they are worried about how others will respond. Ninety per cent of parents said people stare, 73% said they tut, and a devastating 27% of autistic people said they have been asked to leave a public place because of autistic behaviour.

Jenny Paterson

Jenny Paterson

That behaviour could be having a meltdown, a loss of behavioural control that can result in kicking, crying and screaming. To someone who doesn’t know any better a meltdown could look like a naughty child having a tantrum or an adult being a weirdo, but it is an extremely distressing – and often embarrassing – experience for autistic people and their families.

Staring, tutting and nasty comments from passers-by do not help, and we know that over time autistic people begin to retreat. In order to avoid public judgement, they avoid public places. Their worlds become smaller and smaller; more than two thirds told us that they feel socially isolated. That is simply unacceptable, and it’s something The National Autistic Society Scotland hopes to change through Too Much Information.

The campaign’s name describes the experience of being autistic. We want the public to understand the sensitivity to sights, smells and sounds that makes everyday places nightmarish. The feeling of there being no filter. The challenge of being very skilled in something that others aren’t, whilst really struggling with what seems to come naturally to everyone else.

Of course we do not expect everyone to become an autism expert. But we would like the public to understand five key things: sometimes autistic people need extra time to think and answer questions, they can have anxiety in social situations, unexpected changes can cause anxiety, they may have sensory sensitivities, and overload can lead to meltdown. Autistic people and their families have told us that a wide understanding of these facts would make their lives much easier.

Important steps forward are already being taken. We’ve just launched a new partnership with Aberdeenshire Council which seeks to make it Scotland’s first autism-friendly region. That’s exciting but I’m ambitious, and at our hustings  on Tuesday 5 April, I’ll be pressing politicians on what they will do to make Scotland an autism-friendly nation. I think it’s time for us all to get a little more information, and understand how it feels to have Too Much Information.

Find out more about Too Much Information.

Jenny Paterson is the director of the National Autistic Society Scotland

Comments

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1st April 2016 by John

As a parent/carer of a teenager with autism I rarely see my son represented. The classic media portrayal of a child that is a bit strange but at the age of 2 can complete 500 piece jigsaws is not I expect the experience of most people living with autism. It's not a helpful portrayal and has to change. Many people with autism also have significant development difficulties and are unable to carry out the most basic of everyday activities like washing, dressing etc. The 'A Word' is good drama but please don't think it in anyway represents autism more broadly, it doesn't. I've lived with autism for 17 years now and if I was to sum it up in 3 words it would be - complex, challenging and ....complex!