Getting from 'you can’t speak for my child' to 'nothing about us without us': A brief history of diagnostic denial, misuse and misunderstanding in autism

During the modern history of autism, a common thread throughout has been the use of diagnosis, lack of diagnosis, or diagnosis-based stereotypes or misunderstandings to bar, discredit or promote individuals with particular views on autism. In cases like that of researcher Michelle Dawson, the presence of a diagnosis has often been used to discredit the bearer of unwelcome truths. In cases like that of self-advocacy pioneer Ari Ne’Emen, it has been used to accuse the bearer of a privileged state that makes him or her unable to represent the needs of ‘less able’ individuals. In many cases, diagnostic information has been weaponized: used to discredit or demean, or conversely, to claim (sometimes questionably) lived expertise. And when an individual lacks a formal diagnosis but self-identifies as autistic or neurodiverse, what then? In this presentation I will discuss the history of diagnostic denial, misuse and misunderstanding, and suggest some ways that researchers, rights campaigners and self-advocates can manage the risks and pitfalls.