Lived Experience & Expert Knowledge

This blog post is based on thoughts I initially teased out for a talk (titled “Double Vision – My experience of autism from both personal & professional perspectives”) which I gave at the AUsome Training 2020 Conference (https://ausometraining.com/product/ausome-conference-2020/).

A common controversy in the area of autism (and of neurodiversity & disability in general) focuses on the relative importance/validity of “lived experience” versus “expert knowledge”. The experiences of actual autistic people were largely ignored by most psychiatrists, psychologists and researchers until the internet provided an accessible platform for their voices to be heard, so the history of the “ownership” of the autism narrative by professional experts is not reassuring. And even in recent years many of us (including myself) have had experiences that give us good reason to mistrust professional experts. On the other hand, as well as being autistic myself, I’m also reasonably expert in some professional areas potentially relevant to the experiences/struggles autistic people often have (Cognitive-Behavioural psychology and therapy; addictive/compulsive/problematic behaviours; anxiety disorders, etc).

There is a well-known saying by Michael J. Fox, originally in relation to 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 some 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 practice - but I don’t think that that’s the end of the matter. Theoretical speculation, 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”. There are strengths and dangers in the over-objective approach (it can be disconnected, disrespectful, etc…), but also in the over-subjective approach (there can be over-generalisation, sample bias, etc…).

Helpful approaches need to be fed from both perspectives - neither has the full picture. 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. Sometime this is described as combining subjective and objective perspectives, but perhaps a more useful set of terms, which I came across in the work of the anthropologist Marvin Harris, is “Emic”/“Etic” (from inside/from outside). These terms are used to describe the two perspectives an anthropologist can take when studying a particular culture or subculture: the insider perspective of those who inhabit the culture, who know it in detail (possibly from birth), but who also may take it for granted; and the outsider perspective of the trained anthropologist, who can compare the patterns they find with those found in other cultures, and be awake to the inconsistencies that insiders may not see, but who also may be partially blinded by their own deeply ingrained cultural perspectives.

Both perspectives have advantages and disadvantages, and the fullest picture possible emerges from a combination of both. To get the fullest understanding of Irish culture, for instance, it might be thought that the only people with any valid perspective on the matter would be those with the lived experience of being Irish. But, while that is certainly one vital perspective that shouldn’t be left out, I’d also want to hear the perspective of expert historians, sociologists, etc who have studied Irish culture “from the outside”. Both perspectives will have their biases, but the picture we get will be larger, and some of the biases might even balance each other out.

Another example is depression. Again, experiential and professional perspectives combined will give us a fuller picture of this complex issue than either on its own.

This also applies, in my opinion, to the area of assessment/diagnosis (of depression, anxiety disorders etc; but also of autism, ADHD etc) – the inner experience of the individual needs to be added to the expertise of the professional in order to get the clearest picture (I’ll return to the topic of assessment/diagnosis in a future blog post).

Of course, one person can have both lived experience and professional expertise in relation to autism, or other areas. In the addiction counselling field, for instance, where I have 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).

I certainly depend on both perspectives in my own work. I work increasingly with autistic adult clients and the issues arising from their experiences, and while I make enthusiastic use of my individual, subjective, intimate acquaintance with being autistic (as well as the experience of many other autistic people who have helped me so much through meeting them or reading their writings), I also still feed my intensely curious autistic brain with as much reading of the scientific, psychological, philosophical, and clinical research literature as I can.

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.