I was first diagnosed with autism through my local CAMHS in my early teens. To describe the diagnosis as a relief would be an understatement.
It suddenly felt like that step away I seemed to be from my peers was no longer a source of confusion and frustration. Diagnosis went a long way in helping me to accept myself, and find people who shared the outlook on life that had for so long felt overwhelmingly isolating to me.
Between the ages of 21 and 22, I began to develop seizures whilst in the final year of my undergraduate degree. I met with a neurologist who assessed my seizures via video recordings and was able to identify them as due to temporal lobe epilepsy. The diagnosis was jarring at first and took a long while to come to terms with.
I came across Autistica through my work with the National Autistic Society and sought to promote it within my county’s branch, through support groups and on our website. My primary interests are in helping those with disabilities through both research and charity work. I am especially interested in neurodevelopmental and genetic conditions, their behaviour phenotypology and the development of assessment techniques related to these.
Autistica's epilepsy workshop
I participated in Autistica's epilepsy workshop, listening to experts in the field speak on topics that both interested and affected me. As I have both autism and epilepsy, I also hoped that I would be able to offer some insight into living with the conditions that others there would find valuable.
The workshop was fantastic! I learnt so much from so many different types of people and it was great to be in a room full of individuals all dedicated to using research to make a real difference in people’s lives. From clinical specialists, geneticists, neurologists, psychologists, neuroscientists, parents, autistic people, those with epilepsy and more, there were so many perspectives to draw on, which I think greatly contributed to the success of the research project ideas that came out of the workshop. I also came away with a lot of reading and new ideas for future areas of research!
Working side by side with researchers and seeing the expanse of important and interesting topics available to explore gave me a profound feeling of ‘This is what I want to do!’.
I came away rethinking my study options and began researching postgraduate psychology courses across the country. It has made me yearn to contribute to the word of research and have an impact on people’s lives, in the same way that my life has been impacted by previous research into both autism and epilepsy.
I strongly encourage more autistic people to get involved in the world of research.
Our insight is unique and enormously important. Researchers have also realised the importance of listening to us, and they want to hear what we have to say about research that would be most beneficial to our lives. Where we can speak for ourselves, I greatly believe we should.