NEAS CEO John Phillipson reflects on how far the Society has come over the past 42 years, as well as how far we still have left to go…

For 17 years I have been at the helm of the North East Autism Society, and in that time the charity has made great strides in the way we support autistic children, young people and adults.

NEAS was born out of the desire of a group of parents to provide a better standard of care and education for their autistic children, however, when the charity was founded in 1980, there was very limited understanding around autism and terms such as neurodiversity were still unheard of.

Back then it was widely believed that autistic children displayed behaviours that were learned, and, if you broke those habits, you would be able to transform the child. These beliefs were reflected within our services at the time and many practices or strategies that we then deemed acceptable would be considered extreme, unethical or even illegal nowadays.

One such practice was the use of duvets to restrain children when they became dysregulated. I can only assume the intention was that the soft duvet might provide some tactile comfort and help to calm the child – but in reality, most institutions had these filthy old duvets that they wrapped children in, and the practice would lead to further distress.

During my first few weeks here, I remember opening a cupboard in one of our services and seeing a duvet in there. I said immediately: "I don’t know what it’s doing there, but I want it gone, I want it out with the bins."

That kind of thing was prevalent, not only within the Society but across a whole network of autism schools and services at the time. People would regularly say to me, “If you understood autism John, you’d know that this is why we do these things”, but I just couldn’t accept it. 

That’s why, when I joined what was then the Tyne and Wear Autistic Society in 2005 as CEO, I challenged myself to learn as much as I could about autism. I started visiting other organisations and coming back and challenging the things that we were doing here.

I have always felt strongly that, as an organisation, we must recognise the importance of expanding and evolving our knowledge and understanding. That’s why, particularly since I’ve been here, we have made a conscious effort to challenge the misconceptions that society has about autism.

One key commitment we have made is to listen to the very people we exist to serve, which led to the establishment of our Autism and Neurodiversity Think Tank in 2019.

Made up of autistic individuals, the Think Tank provides input into everything from the training we deliver to our staff to the language we use and our annual Autism Acceptance campaigns.

They sometimes come at things from an angle I would never have thought of, and I am endlessly grateful to its members for sharing their lived experiences with us.

It was under their guidance that we made the decision to move away from using the colour blue in our campaigns, and you won’t ever see a jigsaw piece in any of our promotional materials.

This was due to the focus that some organisations around the world placed on deficits and cures for autism. And those types of ideas totally contradict our mission statement as charity, in which we vow to inspire, support, celebrate and equip autistic individuals.

That’s why since 2019 we’ve encouraged the local community to ‘go for gold’ throughout Autism Acceptance Week in April. And this year we’re asking you all to join us as we continue our journey to acceptance.

While we appreciate every pound that is so generously donated in support of our services, I’d challenge you all to get involved with our campaign and perhaps challenge your own understanding of autism

After all, we can only appreciate what life is really like for people who are different to us when we walk a mile in their shoes. So I’d ask you to consider the discrimination that the autistic community is faced with, or the difficulties that can arise simply due to how we structure and order the world.

We might still have a way to go before we achieve acceptance, but if we all work together – autistic or not - we can continue to make a big difference to the lives of autistic and neurodiverse children, young people and adults, as well as their families, across the entire North-east.

Join us on the journey to acceptance