Why ‘Going Gold' for Autism acceptance is important in April

Featured article - 13 April 2022
By Jane Green, SCIE Trustee

As a Trustee, co-production and EDI (Equality, Diversity and Inclusion) member for SCIE and other organisations, sitting on Boards, panels nationally for both health and social care, my so far experience of being a carer, I thought I was aware of most of my rights as a carer and how to care.

I like to pass on my experience, skills and values in these areas where I can but also co-productively create new ways of approaches and support. Often they link to autism which was my professional status in education, care, health, employment and transport accessibility but increasingly everywhere as an autistic person myself.

I’ve been a carer for all my autistic eldest child’s life (J), now 30, also caring for my elderly mother, remotely. She lives independently but needs increasing support, albeit at her own pace. I liaise with her medical practitioners, hospitals, other agencies but with increasing concern especially with newly diagnosed health issues. I have Power of Attorney and appointed carer but, digitally, with one delay on a system or fault, I can be relegated as non-carer. This happened recently which meant I could not in time access the necessary support and meant serious delays for her, my eldest and increased anxiety for myself.

This scenario repeated with J when they became very unwell and I needed to intervene but the system with my own GP practice failed. Suddenly the computer system said ‘no’. I actually sit on their patient representative group, but no amount of having to force myself to talk, under stress this is more challenging for me, could it be accepted that after nearly a lifetime of caring and documented, I wasn’t carer. Systems and processes are good but they are not people. Automated phone systems or even weblinks to other practices are not fit for function for carers particularly autistic carers and we are many and come from all walks of life.

Autism acceptance means accepting our physical health issues and are also real. We need acceptance of autistic physical, multisystemic issues such as symptomatic hypermobility that affects many of us and our connective tissues throughout our bodies. This affects social care as often we need support or need to support others in our family with social care needs. New studies evidence that autistic and neurodivergent people are 2 x more likely to be hypermobile and experience more pain. Accessibility means using our preferred language, identity first language, infinity symbol and colour, gold, but also autism acceptance for our particular issues with autistic health, social care needs and support and the environment.

• Study: Neurogivergent people more likely to experience pain, due to hypermobility

I hope to connect the issues of physical health which impacts on social care but is so often disbelieved.

• Green, J. (2021). Why 'Going Gold' is important on Autism Acceptance Day - 2nd April

Jane Green, MA Ed. Chair SEDSconnective CSWS Trustee. Jane is a professional autism educationalist and champions advocacy in autism health, social care, education, transport accessibility and employment with SEDSconnective , a hypermobility and neurodivergent award winning group based in Sussex with growing reach and a Trustee at Carers Support WestSussex. @JGjanegreen @SEDS