I left school early and at 16 had two basic qualifications, considered dim, and on return to England in secondary school I was absent a lot due to illness and or interest in education nor they in me. Previously I moved to 6 different primary/elementary schools due to my father’s job. I always felt I was different.
Fast forward at 37, I divorced and became a single sole parent of two children. My eldest had severe medical issues after a difficult birth and both had extreme allergies. My eldest was diagnosed autistic, ADHD, and dyspraxic very young at around 3 years old.
I decided to study psychology as a carer, as had no money and there were no benefits or supports that I was aware of then, with the Open University. I wanted to be an educational psychologist as I felt I could help in a better practical way that the interaction I had had with them. I knew in some way I was also autistic but also knew that it wasn’t possible as a grown up woman with children. Although I won awards for my work, teaching and learning even planning the first autism session for my PGCE cohort ever I could not go on to do my Doctorate degree which had been my aim as I was too ill. I still looked after my children and worked long hours plus studying. I continued with my advanced degrees and I know now I am not dim or stupid.
I had a career in education directly as a teacher then became advisory teacher for autism in the county where I still live, then lead for autism social model of education and national lead for NAS, and eventually as an assistant head teacher.
I still wasn’t believed to be autistic despite my asking to be accepted as such; I was not given supports or for my various injured joints or illnesses. I was not masking, which I don’t believe in, I was simply told it wasn’t possible to be autistic as I was a professional and middle aged, by key people. As I am somewhat literal, if I am told I can’t be ill or injured, even though just been put together by A&E or an osteopath I naturally tended to believe them. Also I couldn’t prove I had all the pain I was experiencing and therefore thought maybe I was being a hypochondriac again. So I tried to continue. I was not masking being autistic, I was just not believed by educators, health practitioners, researchers, colleagues and sadly even the autistic stakeholders who still had the belief that ‘it’ only affected young boys. I behave or present the same way before my late diagnosis at age 54 as after diagnosis. I do mask, however, in pain as I don’t feel after all these years of being told I’m making a mountain out of a molehil.
In 2015, it led to complete physical burnout and mental burnout. I couldn’t really move for two years off sofa bed. I actually became more sick, unable to eat for nearly three months due to reflux and pain and, my adult children wondered if I was dying as there was no answer. Only then I received my hypermobility EDS diagnosis and then my autism one which I insisted on getting from the NHS. Sadly, I was still left with absolutely no support. I looked for a group to support what I needed and even started social media, but I couldn’t’ find it. So, I decided to do it myself starting SEDS as a village group in mid 2018.
Fast forward. I now advocate and run the multi award winning SEDS Sussex EDSHSD voluntary group. Helping save lives all ages. During covid 2020 we designed cards that were put on the Dept. of health and social care as no other charities could do this. My aim is to help raise attainment and attendance at schools particularly for autistic neurodivergent children and young people and improve health understanding by professionals. This has been a challenging barrier as even autistic communities do not understand it and educators believe autism is mental or sensory only. Many hypermobility groups did not like the association with autism. Quoting my Patron, it is a ‘brain body interaction’. So that others did not suffer like I did and miss opportunities or even survive, I had a passion to do an education hypermobility autism training and created and led the content for the UK’s first ever school toolkit for EDS and JHS by two large national charities, which has been downloaded 18,000 times since June. Free to use , and created during Covid while my little team I had disappeared. I do this voluntary.
I now advocate, mainly behind the scenes, for health changes in autism health, education and social care, employment and transport accessibility. I speak nationally and internationally and publish articles regularly and with my groups try to empower others like myself who have been silenced and disempowered for years. My first manuscript was submitted last autumn with researchers on this area. We now have evidence of the link that neurodivergent people, autistic, ADHD and TS in this case are two times more likely to be hypermobile in joints and experience more pain, recently published and led by SEDS Patron Dr Eccles.
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