I haven’t posted since November. A combination of a very busy period at work, and some personal circumstances that meant I just didn’t have the mental space to devote to blog post writing. There was also a touch of feeling that there wasn’t much point because no-one is reading these posts anyway! A small dose of rejection sensitive dysphoria (RSD) perhaps?! However, no-one will read this blog if there aren’t regular posts, so I have to keep plodding on to generate the content that may possibly generate interest in the future. Besides, I’m writing primarily for me and to help me process my late diagnosis of autism and ADHD. If I see this as my open journal then there is always a purpose to writing. On I go!
I came across an interesting article today, “Whose Expertise Is It? Evidence for Autistic Adults as Critical Autism Experts”. The article is open access and available for all to read from Frontiers in Psychology. Experts by experience is not a new concept by any means but autistic individuals are still often absent from expert discourse about autism, and particularly from autism research. It is my belief that these omissions are created by conscious or unconscious ableism and a neurotypical approach to ‘fixing’ the autistic person or remedying the autistic experience. The double empathy problem* works both ways:
*…the theory of the double empathy problem suggests that when people with very different experiences of the world interact with one another, they will struggle to empathise with each other.
Milton (2018)
Assumptions, stereotypes, and stigma can bias and negatively influence research approaches and interpretations of outcomes. Of course autistic people are not immune from making these same mistakes and having these biases themselves. We all exist in a society that is built on norms, allistic (non-autistic) expectations, and in an ableist environment. However, the autistic lived experience, and the common special interest of autistic people in their own autism, are key attributes that autistic people can offer to research about autism.
My own experience of becoming aware of the potential I was autistic resulted in a period of intense research into autism and neurodivergency. I read many books, research articles, blogs; watched many YouTube videos, Instagram reels, and documentaries; and listened to countless podcasts and audiobooks. Even the most ardent neurotypical researcher would be unlikely to have invested this amount of time in understanding autism from so many different perspectives, and would not have been able to compare the information being digested to ones own internal lived experience.
Autistic involvement in research should be meaningfully extended to all aspects of it: from the design, operation, analysis, and finally through to the dissemination of the research. Involvement of autistics as real experts, and not only experts by experience, but experts as researchers, should be both encouraged and expected as best practice. Demonstrating real value in the autistic experience, and the autistic characteristics as deep researchers into autism as a special interest would begin to erode the pervasive stigma associated with autism and perpetuation of the medical model of autism, and build the recognition of the value of autism as a difference not a disability.