Autistic expertise: a critical reflection on the production of knowledge in autism studies.
Autistic people must help create the research that shapes their lives.
01Research in Context
What this study did
Milton (2014) wrote a think-piece, not an experiment.
The author asked: who gets to decide what autism research looks like?
The paper says autistic people must be co-researchers, not just subjects.
What they found
The study found no numbers. It found a problem.
Research about autistic people is mostly run by non-autistic scientists.
This outsider view can hurt trust and produce weak knowledge.
How this fits with other research
Fradet et al. (2025) later counted how many autism studies actually use autistic co-researchers. Only about one in three even use identity-first language.
Diemer et al. (2023) showed the idea can work. They let autistic scholars co-build a one-hour teacher training. Professors learned more and kept the gains one month later.
Veneziano et al. (2023) took the same plea into ABA. They told behavior analysts to drop "indistinguishability" goals because autistic self-advocates reject them.
Together these papers move from critique to action. Milton (2014) shouted "include us." The newer studies show it is possible and worth it.
Why it matters
You run assessments or programs for autistic clients. Ask yourself: did anyone autistic help design this tool or goal? If not, pause. Bring in an autistic colleague or advisor. Your data will be richer and your clients will feel seen. Start with one project and share the credit.
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02At a glance
03Original abstract
The field of autism studies is a highly disputed territory within which competing contradictory discourses abound. In this field, it is the voices and claims of autistic people regarding their own expertise in knowledge production concerning autism that is most recent in the debate, and traditionally the least attended to. In this article, I utilise the theories of Harry Collins and colleagues in order to reflect upon and conceptualise the various claims to knowledge production and expertise within the field of autism studies, from the perspective of an author who has been diagnosed as being on the autism spectrum. The notion that autistic people lack sociality is problematised, with the suggestion that autistic people are not well described by notions such as the 'social brain', or as possessing 'zero degrees of cognitive empathy'. I then argue, however, that there is a qualitative difference in autistic sociality, and question to what extent such differences are of a biological or cultural nature, and to what extent interactional expertise can be gained by both parties in interactions between autistic and non-autistic people. In conclusion, I argue that autistic people have often become distrustful of researchers and their aims, and are frequently frozen out of the processes of knowledge production. Such a context results in a negative feedback spiral with further damage to the growth of interactional expertise between researchers and autistic people, and a breakdown in trust and communication leading to an increase in tension between stakeholder groups. The involvement of autistic scholars in research and improvements in participatory methods can thus be seen as a requirement, if social research in the field of autism is to claim ethical and epistemological integrity.
Autism : the international journal of research and practice, 2014 · doi:10.1177/1362361314525281