I was pleased to get to respond to Suzanne O’Sullivan’s The Age of Diagnosis for Fairer Disputations. She wrote a compassionate, curious book on a highly charged issue:
O’Sullivan isn’t against inclusion tout court, but she’s very attentive to who gains and who loses. When a diagnosis expands, people with milder versions of the disorder can quickly become the vast majority of patients nested under this definition. People who consider themselves “on the spectrum” vastly outnumber people with nonverbal autism. When the definition of Ehlers-Danlos syndrome was broadened to include people without a known genetic variant, the new population of patients quickly made up eighty to ninety percent of all cases. O’Sullivan is attentive to cases where the prevalence of the disorder (as originally described) is not increasing, but more and more people with mild or variant versions are identifying with the diagnosis.
A growing community of people clustered around a disorder has some real benefits. The more people there are, the more advocates to lobby for research or to raise awareness of accommodations or to offer solidarity to each other. But if the needs of the people described by the original diagnosis are different than the people who now make up the vast majority of people under the new umbrella, the people with the most severe needs may be crowded out of the conversation.