The neurodiversity movement posits that autism research, dominated by a deficit model, has for decades failed to improve lives. The movement advocates for an alternative model in which autistic stakeholders have a say in research initiatives, rather than being present as mere subjects of study. We agree with their premise and see tremendous value in the movement.
The benefits of a diversified approach to autism research are clear. What is less clear is what might be gained from the repression of certain avenues of inquiry through scientific gatekeeping. If this approach is taken too far, research could become entirely focused on certain topics at the expense of other questions.
In a brief report we recently published in the Journal of Autism and Developmental Disorders, we had a single question. Can non-verbal autistic children with severe impairments show improved performance, without any training, on an established emotion recognition task? We measured participants’ abilities to decode human versus animal-like faces. Our rationale came from past interviews and experiences working with autistic children, as well as grounding in previous studies. We showed that improvement is indeed possible. In doing so, we also showed that individuals with severe functional impairments, who are arguably the least represented in research, can be included.
The work attracted significant criticism from neurodiversity advocates online. A narrative that emerged was that autism research should not be carried out without the involvement of autistic stakeholders, and that these stakeholders should determine the topics of study. Some went as far as to suggest that non-autistic researchers and certain scholarly interests (such as emotion recognition) have no place in autism research. They called for issues deemed important by advocates (such as suicide and depression) to replace emotion-recognition studies.
Should a line of research be abandoned on the grounds that some advocates deem it less useful? We feel this difficult question highlights a potential problem in taking the mantra ‘nothing about us without us’ to its logical extreme.
This debate, which is ongoing within the neurodiversity movement, was exemplified when Woods, Milton, Arnold and Graby stated in the journal Disability & Society that ‘non-autistic academics are not respectfully or accurately critiquing the neurodiversity movement due to the lack of use of autistic scholarship in their work’. In the same journal issue, the autistic scholar Bolton described the developing disdain amongst some neurodiversity advocates towards scientific knowledge in favour of lived experience, and an increasing hostility towards non-autistic researchers. Bolton went on to say that elements of the community are moving away from progress and towards in-fighting and negativity, commenting, ‘I have observed an additional troubling trend whereby autistic individuals presume to limit the breadth of work in which researchers engage’.
This is a trend we, too, have observed. It is our contention that there should be a space for autistic and non-autistic individuals alike in research, combined with the freedom to pursue divergent topics of interest, whether they be applied or purely theoretical. But what is perhaps particularly important about the theoretical aspects of research is that they often lead to unexpectedly applicable findings. Some of humanity’s most practical innovations derive from questioning of a more abstract kind. Why not strive for both?
Liam Cross & Gray Atherton
Edge Hill University
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