Autistic Knowledge Development: Working to improve the life opportunities of autistic people

The aim of Autistic Knowledge Development is to bring more autistic people to the forefront of anything that is related to them.

Autistic Knowledge Development is an autism think tank, led entirely by autistic people, working to improve the life opportunities of autistic people. They have big ideas and are working on innovative new projects. Both Leila and Sean, the drivers behind Autistic Knowledge Development, strongly believe “it’s not about us, without us” and their general premise is to bring more autistic people to the forefront of anything that is related to them.

Sean remarks that, if a project aimed at women was entirely designed and delivered by men, no matter how well intentioned it was, people would quite rightly have something to say about it. “But somehow,” he says, “it’s okay in the autism sector.” We need to remove the misconception that the only reason they are at the table, is because they are autistic. It’s not about finding any autistic person and making them a CEO, it’s about finding the right people who are incredibly talented but have reached unfair blockages and opening the door for them and enabling them to apply their wealth of knowledge and experience through an autistic lens.

To do this, they aim to create partnerships where at all possible and are fully integrated with the people they work with. All of the work they do is developed in conjunction with, and led by, the community they support and they are very clear that their work is all iterative. “Nothing we do is ever finished, and action research is embedded in everything we do.” The community ranges from children and young people to people in their seventies and all they want to know is – has the support they have provided made a difference to how they feel about being autistic? They can’t change being autistic, and they wouldn’t even if they could, but they can change how people feel about it. Sean quoted that “less than a quarter of autistic people are employed, but almost three quarters of the autistic community want to be,” and this has a huge impact on their mental health. Prior to accessing their support service, which runs across Scotland in partnership with the National Autistic Society Scotland, one in four people felt they had nothing to offer society, but this dropped to one in ten following the programme. Sean and Leila both believe that “being born autistic, shouldn’t mean that you automatically are signed up to a lifetime of clinical anxiety and depression.” They can evidence that people feel better about being autistic if you help them find a sense of purpose and show them what they have to offer society and that this can help tackle depression and anxiety in people that are autistic.

The best thing they are doing is “growing a community in a safe place, providing the opportunity for people to make connections, to build and to grow and have conversations.” They are building, what they call “a silent scaffolding” around the people they work with, giving them a structure to rely on if they hit a problem or need advice.

Sean says that he has had to learn a degree of tolerance for how the system currently is but that “it’s better to be in the tent than outside shouting into the darkness.” They are asking organisations to work with them to ensure things are different for those that come after them. The training they deliver has been designed and is facilitated by autistic people and through this, they want to set a standard of best practice, work with organisations to shift the power dynamic and ask them to consider reasonable adjustments to their employment structure.

But they know that no one organisation can stand as an island on its own and they think it would be brilliant if organisations across Scotland, collaborated and shared more, Leila says, “evidence based learning should be shared. If you know something works, why should someone have to go through the hassle of trying to figure it out when you have it there? If only there was the ability to share projects that work, so that people can replicate them – like train the trainer.”

They work closely with the Scottish Government Policy team and Self-Directed Support Scotland but they would welcome more relationships. They are always open to any organisation willing to evaluate and change. They want everyone to feel comfortable enough to make mistakes and say the wrong thing because they believe that if everyone is too nervous to say or do anything then nothing changes. As Leila says, “if you always do what you’ve always done, you always get what you’ve always got.” There is change needed, but it doesn’t have to be drastic, it just has to be best practice.    

The work Autism Knowledge Development are doing to support the autism community is based on changing the experience of autistic people in ten or fifteen years from now. Leila says “we’re trying to leave a bit of a legacy for future generations, so that as they understand that they’re autistic or they actually get an autism diagnosis they land in a safer place and they have more resources specifically from autistic voices to be able to support them and they see being autistic in a more positive way.”

Learn more about the work of Autistic Knowledge Development.

You can read all Connected Communities case studies here: https://www.alliance-scotland.org.uk/blog/case_studies/?projects=connected-communities