Evidence-Based Practice in Teaching for Best Possible Understanding of Autism.
There is a well-known saying by the actor Michael J. Fox, originally made in connection with Parkinson’s Disease, but often quoted in other areas where people experience disempowerment in relation to medical, psychological and scientific experts: “The message is so simple, yet it gets forgotten. The people living with the condition are the experts.”
I do think there is an important truth here in relation to our growing understanding of autism, but only up to a point. The true piece is that lived experience is the ultimate bottom line in determining what’s relevant, what’s important, what’s true in daily practice - but I don’t think that that’s the end of the matter. Scholarly/scientific research and clinical experience also make essential contributions to our quest to gain the fullest possible understanding of the wondrously complex phenomenon we call “being autistic”.
Helpful approaches need to be fed from all three perspectives, taking evidence from lived experience, academic research and clinical experience, an approach sometimes known as Evidence-Based Practice x3 (EBP3 for short). The concept comes from the context of healthcare, especially nursing, see for example the following two written pieces:
Physiopedia article Evidence-Based Practice (EBP)
We need to know about individual experiences of growing up autistic, of living life as an autistic adult, of being in relationship as an autistic person, and so on; but we also need information on all these topics which is less individual and more general, describing larger systematic patterns of psychology, behaviour, social interaction etc. All three perspectives in the EBP3 way of thinking have advantages and disadvantages, and the fullest possible picture (whether we are exploring autism, or addiction, or gender diversity, or any important and complex human issue) emerges from combining useful information from all perspectives. In the addiction counselling field, for instance, where I worked for a good deal of my career, personal experiences of addiction & recovery are combined with scientific theory & clinical experience in designing treatment approaches, and there is cooperation (along with some mutual suspicion!) between professionals & recovering addicts (some of whom train as professionals).
We certainly look to all three perspectives in creating our courses at Vanguard Neurodiversity Training. No perspective has all the answers, or even all the good questions. Multiple perspectives can help keep us in an appropriately humble position of healthy uncertainty as we grow in our understanding of what it is to be human, in all its (neuro)diversity.
