Before becoming a Community Interest Company (CIC) we had a wish to create an Autism friendly event. But as you may know, there are so many myths regarding Autism. Indeed, through ignorance (unknowingly) it can be easy to upset Autistic people.
In truth I made a mistake when interviewing Neil Cary Head of Trustees for Autism Bucks. I stated, “those suffering with Autism.” Rightly so, Neil corrected me: “We would never refer to someone ‘suffering with Autism;’ Autism is not a disease or a disability and shouldn’t be referred to as such.”
In the lead up to our next Catch22jams event on the 30th of September we had powerful meetings with Neil to create an Autism friendly environment. In the interview we discuss misconceptions, the myths of Autism and how to make an environment that is Autism friendly.
Talk to us a bit about Autism what it is and how it impacts people?
The whole conversation about Autism is rife with misconceptions. Autistic people must tolerate questions and assumptions like: “If you’re Autistic, what is your super-power?”, “You don’t look Autistic”, “Autism is a developmental disability,” “Autism only affects boys.”
Autistic people interpret the world in ways different to the ingrained, accepted, and standardised notions that so-called neurotypical people adopt. Evolution, religion-derived morality and received norms have brought us all to a place where we believe there is a “standard” code for life. This has been defined as “normal”, and anyone not following the code is “diverse”.
Therein lies the clue to Autism. Autistic people (“neurodiverse”) respond to situations in ways that defy normal practice. As a very light example, consider a standard greeting like: “Hi, how are you?” A neurotypical person will usually follow the convention, and respond: “Hi, I’m good thanks”. And from there the conversation moves on. However, an Autistic person will take a more literal approach and assume the question “how are you?” is a sincere enquiry that needs a full and detailed response describing their current state of health and frame of mind.
Can you discuss masking?
Autistic people understand (because they are told) that their reactions to certain situations are outside the norm; so, they suppress (or mask) their instinctive reactions, and replace them with what they believe the acceptable response is – this can be exhausting.
The relentless processing of information can become overwhelming in a situation where the senses are being over-stimulated. Bright flashing lights, loud noises, crowds, unexpected physical contact, relentless questioning … all of these can drive an Autistic person into a “meltdown”, or extreme emotional response. They will either simply avoid these situations (leading to accusations that they are withdrawn or anti-social) or protect themselves with devices like noise-cancelling headphones and dark glasses, again driving the assumption that they are distancing themselves from society.
This is relevant as I expect sometimes there is a misconception they don’t want to socialise.
Nothing could be further from the truth. Autistic people want the same things everyone else wants love, happiness, security, companionship, fun. The problem lies not with themselves, but with the way the neurotypical world reacts to their non-typical behaviour. A better-educated world would be accepting of their differences and learn to be inclusive. The reward would be an opportunity to hear Autistic points-of-view that may excite, challenge, stimulate and, who knows, even change the neurotypical view of the world.
Tell us a bit about Autism Bucks and how it supports Autistic people?
Autism Bucks is a charity that supports Autism, Autistic adults, and carers of Autistic children in Buckinghamshire; there are similar charities in other UK Counties. Our remit is broadly split into Support and Educate.
We currently have around 180 members for whom we provide opportunities to mix in a social environment with others like themselves. This covers online meetings, face-to-face meetings, and social outings, which in the past have included go-kart racing, farm visits, walking tours, boat trips, swimming, museum excursions and more.
Away from the social side, we also help our members deal with a world that’s not as sympathetic as it could be to their situations. As an example, 2 of our Trustees are trained to advise on PIP (Personal Independence Payments): they have been helping our members find their way through the bureaucratic labyrinth of support from the Government and local councils. Other help has included job hunting, sorting out accommodation, or simply being a friendly ear.
On the other side, we maintain our website which is regularly updated with the latest news and advice on this complex subject.
what mattered most to our members was knowing that Catch22 understood their situation and was trying to adapt the environment to their needs.
We were keen to find a way that Catch22jams can bring a safe night for Autistic people-what are the challenges for Autistic people who want to go out and enjoy music?
It’s wonderful that Catch22 wants to do this, and we are committed to helping you make a success of it. The challenge is not a small one – Jazz sessions include many of the sensory over-stimulation situations: loud music, lights, crowds and so on.
We started from the assumption that some of our members want to attend one of these sessions but were reluctant to do so for fear of their own reactions. We then worked with you to see what could be done to get around this. These included: reserving an area where they could be part of the audience but not right in the middle of it, turning down the recorded music between sets so they could have quieter recovery periods, providing quiet spaces where they could go to recharge, offering table service for the food and drink, and ensuring there would be an easy path to the outside for those who wanted to take themselves out the environment.
And here’s the thing … what mattered most to our members was knowing that Catch22 understood their situation and was trying to adapt the environment to their needs. Awareness of what they are getting themselves into reduces a lot of the stress when attending this session. They know there will be crowds and they know the music will be loud, but they also know this is being organised by people who care enough to try and make it work for them.
How do venues/nights out ultimately ensure they bring nights which are safe for Autistic people?
In truth, I don’t think there’s a set of “rules” that venues need to follow to attract an Autistic audience. Far better than rules are an awareness of Autism in those responsible for the organisation.
A few general suggestions: provide detailed information upfront so Autistic people can research the event, have staff trained to recognise the symbols of Autism (e.g., the Sunflower Lanyard) and be able to respond accordingly, create “quiet spaces” to which they can retire to recharge their batteries, and know how to help someone who becomes distressed and disoriented. If the event includes unexpected noises or lighting displays, find a way to signal these in advance.
Lastly what’s the best way people can get involved to support, add, or champion Autism Bucks or Autistic people?
As a charity, we get no financial support other than that we generate ourselves or receive from kind benefactors. I know everyone is bombarded with requests for money, which makes us especially grateful to those people and organisations who have donated to us in the past and continue to do so.
We are also thankful that Catch22 and others like them have put extra time and effort into making their environments suitable for our members.
We are always in need of volunteers. Autism Bucks has no paid staff – everything we’ve achieved is through the time given freely by the Trustees and Volunteers. We are looking for people who are dependable, giving with their time, and empathetic and understanding of Autism. All we ask is that you join our meetings and social activities, ready to help if the need arises. This could include anything from setting up the venue, making cups of tea, or simply talking to our members; Trustees from Autism Bucks will always be there to guide you and support you.
Anything to add?
Autism is a long journey of learning and understanding. Meet our members and hear their stories. We promise you will be amazed by the diverse spectrum of Autism.