Today I attended the first meeting with the wider NHS England Autism team, which I would describe as small but perfectly formed. I had already spoken to Sarah Jackson on Twitter, and also met Aaron Oxford after speaking at Skipton House in London but this was my chance to meet the rest of their colleagues and learn more about the work that is being undertaken in NHS England from the perspectives of both awareness within the organisation and also maintaining a progressive agenda within the wider healthcare provision for those of us on the spectrum in England.
Three individuals, Carl, Aaron and myself contributed from a lived experience perspective to a number of different threads to the team’s work including information posters, a informational video that was being produced and also more generally about how the process of making a complaint or giving feedback could be improved, based upon our own past experiences.
Making contact, like I did today. with more individuals who are passionate about the work I am dedicated to makes the hardship of moving forwards when there seems little hope of success worthwhile. It gives me the chance to place my own life in the context of that of my community of fellow autistics and also understand the links within the greater disability, neurodiverse and mental health communities in which we are connected to.
Although I have accepted the fact that I am unable to have more children because of the potential impact of my son’s and my health, the joy of creativity is still something that I can explore and embrace, perhaps in a more fundamentally autistic fashion by organising this around the creation of new knowledge and new ideas, rather than the production of flesh and bones.
I am lucky to have the best of all my worlds.