1/4 Full article: https://www.frontiersin.org/articles/10.3389/fpsyg.2017.00438/full
#AccessibleAcademia Nothing about us without us
Who: Gillespie-Lynch and colleagues
Where: Frontiers in Psychology
Title: Whose Expertise Is It? Evidence for Autistic Adults as Critical Autism Experts
Autistic Adults as Critical Autism Experts
This study wanted to see how knowledgeable autistic people are about autism, and the level of stigma they hold towards autistic people. The conclusion was drawn that autistic people should be considered autistic experts as they have insights from their lived experiences and also build upon these by systematically researching autism.
Traditionally, professionals who observe autism have been considered the experts on autism, even though they often lack lived experience of being autistic themselves.
Common Assumptions about Autism
Non-autistic people tend to conceptualise autism as solely related to socio-communicative difficulties, but autistic adults recognise sensorimotor challenges, such as sensory sensitivities, as both core to autism and as impacting their socio-communicative abilities. Autistic adults also identified societal factors which contributed to challenges associated with autism.
Behaviours associated with autism elicit stigma from non-autistic people, but this is reduced when the non-autistic people are aware that the other is autistic.
Autistic people with fewer visible characteristics of autism report more stigma, perhaps because they are interpreted as intentionally deviant rather than autistic. This stigma is perpetuated through the media, which pushes an autism-violence link, despite research finding that autistic people are less likely to commit any crime compared to non-autistic people.
Non-autistic people who had a high quality relationship with an autistic people were more likely to accept an autistic peer.
Knowledge of Autism
Autistic people had expert knowledge of autism, not just from their own lived experiences, but also through extensive research of autism and the diagnostic processes. Most autistic adults had strong opinions about the revision of the diagnostic criteria in the DSM-V, for example. They also tended not to see autism through a deficit-defined medical model, where non-autistic people did, instead seeing autism through a biopsychosocial model consistent with the neurodiversity movement.
Many autistic adults expressed that they had an excess of empathy which they struggled to express, and an explicit theory of mind
However, autistic adults felt they were still overlooked in favour of academics.
“Everyone is an expert bar the person with a diagnosis.”