At times, this has been a little bit uncomfortable because, as I always say, I cannot speak for all autistic people. At the same time, I feel I do have a pretty good understanding of autistic issues, including those affecting people with learning difficulties or non-speaking people. I know several such individuals personally and whenever I am with them I am struck by how well we understand one another, whereas I can often struggle to understand neurotypicals. This is the famous double empathy problem in action.
So much of what I do has been a process of translation: between lived experience and institutional practice, between neurodivergent insight and neurotypical assumptions, between urgent need and bureaucratic tempo. What began as a necessity - responding to the marginalisation and misunderstanding of autistic people - has developed into a more strategic form of engagement, helping organisations, companies, projects, universities, funding bodies and more navigate questions they didn’t always realise they needed to ask.
To make these translations requires understanding both myself and autism more generally, and being able to communicate those insights in a whole range of situations from formal meetings and consultancies through to casual encounters. This can be quite challenging and indeed tiring, but I measure success and satisfaction in terms of small victories. The most meaningful outcome is not structural change but a quiet moment of recognition, for example a person reconsidering a long-held assumption or an organisation rethinking its definitions of excellence.
At the heart of my work lies a deceptively simple proposition: autistic people should be involved in decisions that affect autistic people. Yet in many academic and cultural settings, this principle is still treated as novel.
My first steps were the monthly Propeller workshops at BOM (Birmingham Open Media). Fresh from diagnosis, I encountered a group of other autistic adults for the first time. It was a remarkable experience and really helped me to understand the commonalities between us. We came from very different backgrounds and had widely varying support needs, but found an immediate and very direct form of communication that was open, honest and very rewarding. Full marks to Chloe Lawson, who ran those workshops with care and insight.
Since then I have:
- served on disability panels at the University of Leicester, where I also founded the Staff Neurodiversity Group;
- worked with the NHS and the local council on the Leicester Autism Partnership board, where I have also helped to develop the Autism Space website;
- advised venues and organisations such as Leicester Railway Station, Phoenix Cinema, Attenborough Arts Centre, and many more, on interior design and accessibility;
- been part of disability consultancy groups such as All-In Leicester, the Phoenix Advisory Group and Life on the Level;
- worked as a consultant with large organisations such as Arup, Atkins Global and even the House of Lords;
contributed locally through advisory roles with MBD Ltd and Attenborough Arts centre and work with ArtReach on disability leadership in the Midlands;
- in artistic contexts have worked with the Percy Grainger Society, The Space, the BBC and Unlimited on various autism-driven arts projects, podcasts and web developments;
- worked with charities such as Mosaic, which aim to improve the lives of autistic people.
More important than all of this, however, are the many personal interactions I have had with both autistic and non-autistic people, during which I have tried to discuss and translate autistic issues as best I can. All the while I remain conscious that my very presence is itself the most powerful representation. To simply be autistic in professional and public contexts is to represent something that is still all too often invisible.
This work requires stamina, strategy and no small amount of patience. But it also brings a peculiar joy: the joy of working towards a world where autistic people are not just accommodated, but understood and valued.
That world is not yet here. But in every consultation, conversation or contribution, we help bring it closer.
