Hidden isolation: When autism can make leaving the house impossible

Tania's note: Welcome to new SNJ team members Willow, and SEND blogger CrossandGinger. Both are parents of children with disabilities and answered my recent call for help 🙂  ! Today CrossandGinger introduces a post for Autism Awareness...

Hidden isolation- when autism can make leaving the house impossible

How do you feel when your train or bus is suddenly diverted, delayed or cancelled? For most people, it's incredibly frustrating or even aggravating. But for autistic people, unexpected change can feel like the end of the world. The impact can be devastating.

It's World Autism Awareness Week and, with more than 1 in 100 people in the UK on the autistic spectrum,  NAS chief executive, Mark Lever, has written for SNJ about their powerful new film, "Diverted", that reveals the hidden isolation many autistic people experience.

Overwhelming and isolating: How autism makes the world an uncomfortable place by Mark Lever

Saskia, 21, is autistic and stars in our latest film. She plays an autistic woman who is so anxious about her train journey to work that she feels unable to leave the house at all. She becomes completely overwhelmed as she imagines all the things that could go wrong: delays, diversions and cancellations, loud crowds and the tuts and stares that come when her discomfort becomes visible.

It was a very personal project for Saskia, as her own experiences reflect the story closely, so much so, that she felt very emotional when she first watched the film. She told us: “Being autistic can feel very lonely and isolating. Even if you are surrounded by a group of people, you feel alone because you feel different and it takes up a lot of energy trying to keep up with social cues."

Saskia is not alone feeling like this. We surveyed over 2,000 autistic people or parents responding on their behalf. Nine in 10 told us that unexpected changes make them feel anxious and 67% said the public react negatively (stare, tut, make comments, roll their eyes) when they try to calm themselves down (flapping their hands or rocking back and forth) to unexpected changes. We know that people don’t set out to be judgmental towards autistic people. The problem is that they often don’t see the autism, they just see somebody acting in a way that isn’t familiar to them.

The impact on autistic people can be devastating. Over half of the autistic people we spoke to said that a fear of unexpected changes has stopped them getting on a bus or train. 

We won't accept a world where autistic people feel shut away. Unexpected changes are part of everyday life. But we can all help this World Autism Awareness Week, by finding out more about autism and the small things we can do to make the world more autism friendly. For instance, if you see someone having a hard time, just like Saskia’s character in our film, you can help by understanding that the person could be autistic and not staring or giving them a bit of space. We’ve got lots of ideas on our website and would encourage everyone to take a look.

It's not just the public that can help either. Travel organisations must do their bit too, by finding out about the needs of autistic passengers or following in the footsteps of Gatwick Airport by achieving an Autism Friendly Award.

The Department for Transport (DfT) is developing an Accessibility Action Plan. We’ve responded to their consultation and are also contributing by collecting stories of autistic people’s experiences on public transport. We plan to share these with the Government, bus and train companies across the country to help them understand the steps they can take to become more autism friendly. If you have a good or bad story about public transport, please visit our website and tell us about your experiences.

Mark Lever, Chief Executive, National Autistic Society. For more information, please go to http://www.autism.org.uk

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CrossAndGinger
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CrossAndGinger

Rambling ginger harridan, agitator and tea connoisseur, I spend my days cogitating on the world of additional needs, and trying to get on top of the laundry.
CrossAndGinger
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