"Even though I am autistic myself, I learn so much through these interactions about the different ways autism, pain and even research itself is experienced..."
Written by Bethany Donaghy - age 26yrs | SEDSConnective Pain Advisor
Given April is Autism Acceptance Month, I thought it would be fitting to write a blog post about my experiences as an autistic person, who researches autistic people’s experiences of pain.
I received my autism diagnosis when I was 22, before this I was not entirely aware of what autism was, or how it could influence experiences throughout life.
After my diagnosis, I began to learn more and more about autism and to understand why I did some things differently from others and some strategies I could use to manage anxious feelings from - for example, sensory inputs, and really how to accept who I truly am.
Now, 4 years on, I am an autistic person, who also researches autistic people’s experiences of pain.
I really love my work; I enjoy so much speaking to, and hearing from autistic adults and autistic children, and hope that they find these interactions useful, as truly, without them, this research would not exist.
I use a “Nothing About Us Without Us” approach throughout my research, which means I involve other autistic people through all stages; this includes designing a study, making sense of what we find, and putting our results out into the world.
Even though I am autistic myself, I learn so much through these interactions about the different ways autism, pain and even research itself is experienced.
After all, my autistic experiences differ greatly from another autistic person’s experiences, so it is important we work together involving these experiences to make sure everything we do is accessible to others.
This is so, SO important - to make sure that our research is actually relevant to autistic people’s lives, and means it really can make a positive difference.
I truly hope the position I am in as a researcher, and the work I am doing alongside some amazingly talented and smart people - including the people here at SEDSConnective - benefits at least one autistic person in their experiences of pain.
I hope this blog post has provided some in sight into autism research; if anyone would like another post about pain research in general I would be happy to write one!
Bethany Donaghy is a PhD candidate at Liverpool John Moores University, UK. Her research looks at autistic children and young people’s experiences of pain and some of the things which may be important to these experiences.
Bethany is also a pain advisor here at SEDSConnective & first author on the Co-occurring Physical Health Challenges in Neurodivergent Children and Young People : A topical review and recommendation