Organisation gives autistic people ‘a platform to be heard’

“There’s a very common saying used among autistic-led organisations like ours, ‘nothing about us, without us’, and that is central to what we do,” said Ryan, who was diagnosed with Asperger syndrome, an autistic spectrum disorder, at the age of 13.

 “Autistic UK is entirely autistic-led – to my knowledge, we are the only autistic-led organisation in Northern Ireland. The entire committee is autistic, and is also quite diverse, in terms of age and gender. Our main priority is to campaign for the rights of autistic people in society, and to ensure autistic people are given a platform to be heard, and a seat at the table when issues that affect them are being discussed.”
Despite the work of advocacy groups like Autistic UK, there are some perceptions of autism which remain hard to dispel. “I find one of the most common misconceptions is that autism is still primarily seen as a ‘boys’ condition’,” Ryan added.

“Autistic women have found it very difficult to obtain a diagnosis, and there is still a perception that women cannot be autistic. This is starting to change, but when you look at any media portrayal of an autistic person, it is male every single time.”

Last week, Ryan participated in a radio debate on BBC Talkback with Dr Mike Shooter, a child psychiatrist who made the controversial claim that autism is a ‘badge of honour’ for some parents.

“I was quite happy to be asked to participate in that particular debate,” said Ryan. “However, it was tinged with sadness, because I was the only autistic person who was given a platform to challenge Dr Shooter on his claims. The likes of ‘This Morning’, for example, failed to bring in any experts and allowed Dr Shooter to make his claims completely unchallenged.”

And while representation for autistic people in the media has improved, there is still work to be done: “I think the media is starting to recognise that autistic people have a voice, but there is still a long way to go before we reach our destination. The narrative is still overwhelmingly controlled by the people surrounding the autistic person – parents, professionals, teachers etc. – and I feel at times that there’s a tendency to talk about autistic people, without ever actually talking to autistic people.”

It is a similar story within some autism charities and advocacy groups, Ryan added: “Some do not have a single autistic person on their board, or any autistic people employed by them.

“Part of what attracted me so much to Autistic UK was the chance to be working alongside a group of people who have the same mindset as me, and I have found working with the other members of Autistic UK one of the most enjoyable and rewarding experiences of my life.”

Ryan is currently seeking autistic adults to share their stories ahead of Autism Awareness Month in April. “There’s been a great response to my call so far, but we still need some more views, and I’d be delighted to get some more people involved to tell their stories,” he said.

“It’s vitally important that we give autistic people the opportunity to share their experiences, and Autistic UK is delighted to be able to assist in giving people a platform they may otherwise not be able to avail of.”

Ryan can be contacted by email at press@autisticuk.org

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