NHS England ‘Act, Listen, Do’ event – March 19th 2018

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.

A number of points were raised. The lack of general healthcare support like is available for those with severe mental illness and also intellectual challenges. The need for a consistent marker of adjustments in healthcare records for individuals with autism and/or intellectual differences. The importance of making the process of feedback, concern raising and complaint making to be as easily as possible and to offer appropriate support or advocacy if and when required.

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.

The day was really really enjoyable. We all had the chance to speak at length and individual communication styles were honoured which is so important when you are working in a mixed group. I was challenged on several points which was exciting and stimulating as these are the interactions that make me consider my worldview from the perspective of others and really refine my understanding of my own 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.

The construct of my life, as I understand it is moving further away from the socially according labels that I have had to organise my existence around. I don’t actually have the words to describe what I think I might be. I’m not really sure if they even exist in verbal language yet. What i do know though is the excitement of feeling I am walking on untrodden territory before. The definition of what we understand as autistic as given by those whose experience is within this remit is in a embryonic stage of development.

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 not excluding the challenges and joys of parenthood as outside the desires of autistic individuals but rather suggest that the learning and knowledge might be an equally fulfilling life purpose for autistic women.

I am lucky to have the best of all my worlds.