My first blog article for a long time, and this is something I feel extremely passionate about – and my language here tends to reflect that. It goes a bit Billy Connolly – Stephen Fry.
Hmmm …. Well, I’m not sure.
What I would say is this – that autistic people can become experts on autism, but we’re not experts purely because we’re autistic. Expertise is more than just being autistic or dyslexic or whatever. There’s serious marshalling of skills involved in developing expertise. Wasn’t until I started my studies that I found this out…. how little I actually understood compared to what I understand now.
As for autistic people being the ONLY experts on autism – fuck, no.
That’s just fucking arrogant and potentially Dunning-Krugerish. If someone diagnosed with cancer said ‘Well, I have this cancer so I am the only sort of person who could be called an expert’, we’d look at them and think ‘Fuck off!’.
I’m autistic. I’m also a psychologist who has specialised in autism issues across the life span. Before I started my studies, was I any sort of expert on autism, purely by virtue of being autistic? Fuck no. When I finished my B. A. Sc.-equivalence – was I an expert then, purely by virtue of being autistic? Again, no. Did my studies help? A bit. What about having gone through postgraduate training? Am I an expert on autism? Someone thinks so – I’m an associate editor for a journal dealing with autism practice. Does my being autistic make me that expert? Yet again – not a chance. Does my training make me an expert? Well, it gives me some level of expertise, but I don’t bloody feel like I’m an expert. I feel less of an expert NOW than I ever felt before I started my studies. At this point, I should refer people to Dunning & Kruger and their paper: https://www.ncbi.nlm.nih.gov/pubmed/10626367
J Pers Soc Psychol. 1999 Dec;77(6):1121-34.
Unskilled and unaware of it: how difficulties in recognizing one’s own incompetence lead to inflated self-assessments.
Kruger J!, Dunning D.
¹ Department of Psychology, Cornell University, Ithaca, New York 14853-7601, USA.
People tend to hold overly favorable views of their abilities in many social and intellectual domains. The authors suggest that this overestimation occurs, in part, because people who are unskilled in these domains suffer a dual burden: Not only do these people reach erroneous conclusions and make unfortunate choices, but their incompetence robs them of the metacognitive ability to realize it. Across 4 studies, the authors found that participants scoring in the bottom quartile on tests of humor, grammar, and logic grossly overestimated their test performance and ability. Although their test scores put them in the 12th percentile, they estimated themselves to be in the 62nd. Several analyses linked this miscalibration to deficits in metacognitive skill, or the capacity to distinguish accuracy from error. Paradoxically, improving the skills of participants, and thus increasing their metacognitive competence, helped them recognize the limitations of their abilities.
There is nothing about being autistic that protects any of us on the spectrum from metacognitive deficits – indeed, there is sound research that shows that we, too, are as prone to this problem as non-autistics – maybe even more prone. This doesn’t mean that we’re inferior: it just means that we are bloody human, too. Whilst ever we are, outwith any educational interventions, prone to metacognitive deficits in the same way as non-autistic people are … we cannot seriously expect (nor should we!) to be taken seriously when we make stupid statements like “the only autism experts are autistic people”. Because – given what ‘expert’ means – we are not ever going to be experts without having any bloody education or training that helps us to put our experiences into some kind of proper epistemological framework.
Know who else says “We’re the only experts because of our experiences”? Antivaccinationists.
And we know how ‘credible’ _they_ are.
No. We are not experts ‘purely by experience’; and we are not the only experts on autism. And, whilst ever any of us go around making that sort of statement, nobody is ever going to take us seriously. I cannot in all honesty get behind that sort of crass statement.