Mike Penny

Lothian Autistic Society

The Lothian Autistic Society is a local family charity. Our links to the Festivals initially came through a community programme where tickets were made available for community organisations to attend Fringe festival events.

Last year as part of pilot programme I started a programme for young school age children with autism, where we dedicated a week to getting them involved in the Fringe.

We had artists come and visit young people in school during the holidays and also take them out to visit the festival. We’re trying to find ways of improving access for young people with autism to attend the Festivals, mainly through collaboration with the Fringe.

I’ve been an Edinburgh resident for some time and have a daughter with autism, so I do understand the challenges families with autistic children face attending the festivals – the business, the complete manic-ness of what goes on and how difficult it is for young people with autism to feel comfortable in that busy, busy setting.

So we decided to try and find ways to take away some of the anxiety the families face. The Fringe last year introduced its own initiative with ‘sensory backpacks’ (containing a fidget toy, earplugs, water bottle, stress reliever, ear defenders and a list of relaxed performances)

to give them some way of managing the ‘in-your-face’ stimulus that people experience. We try and manage that differently so the anxieties they face are reduced. A lot of what we do as an organisation is to help people with making their settings a lot easier to handle.

What do you enjoy most about working for the festivals?

For me it’s about giving young people with autism better access to the things everybody else can take for granted, to give them the confidence and opportunity to get out there and explore the world in a safe and comfortable way, so it’s not scary or difficult.

I’m keen to see the families we work with get access to the same things other families do, to take away some of the stresses and strains you feel as the parent of an autistic child. Families with autistic children tend to avoid going into these busy settings, because it’s easier that way. But by avoiding things for ease, you miss out on some of the quality things in life. We try and manage the situations so the fear and anxiety becomes less critical and doesn’t in itself become a barrier. For most autistic people the anxiety is, in the end, the most disabling feature of their condition. The stress and anxiety of doing something new means it’s easier to avoid it, they choose not to do it, and their anxiety becomes disabling.

It’s fabulous to see people enjoy themselves, this strong, clearly uninhibited expression of joy and pleasure, it’s great for everyone to see and feel. Sometimes it can look a little unnerving or uncomfortable to others, but seeing people get that joy, and pleasure from new experiences is wonderful. It’s something you tend to forget about when you look at people with disabilities. So finding and facilitating ways that they can experience the same excitement that other people have and express themselves, it’s a wonderful thing to see.

What is your favourite festival memory? 
Much of what we do know is about taking away the stress and anxiety of getting people into shows. But sometimes it’s the opposite. Some years ago, I was working with a social worker who was working with a young man who really loved a particular show – there was a particular moment where the performer disappeared from sight and then came out of a hidden trap door into the middle of the audience, a big surprise. This young man really loved that moment. Lots of people with autism have an episodic memory, so things are new to them every time they see it, even if they’ve seen it before. He used to sit and wait for this point when the artist came out of the floor. He was there every performance for a week and it began to make the performer quite anxious, probably slightly dreading seeing the young man in the audience. So, the anxiety was switched onto the performer, seeing this young man leap up in the air with joy every time he came out of the floor. Moments like that change the dynamic in how we look at autism in a particular setting and the impact they can have on others – I like that sense of switching things around.

What makes you proud to be a Festival City citizen? 

I think the Festivals bring an immense amount to Edinburgh, they bring a livelihood and a dynamic you don’t get in that many other places in the UK.

It brings a liveliness to the streets, a different buzz to the city. I think as it’s grown the city has become proud of it. I’m not one of the residents who think it’s a nightmare time of the year. I used to work on the high street and found that difficult, but other than that it brings a massive influx of a whole

range of cultures and ideas and thoughts to the city – I think it’s a wonderful benefit. I’m excited to see it again next year.