From the preface to The Politics of Autism.
A major theme of this book is that just about everything concerning autism is subject to argument. There is not even any consensus on what one should call people who have autism and other disabilities. “In the autism community, many self-advocates and their allies prefer terms such as `Autistic,’ `Autistic person,’ or `Autistic individual’ because we understand autism as an inherent part of an individual’s identity,” writes blogger Lydia Brown.[i] Other writers prefer “people-first” language (e.g., “persons with autism”) since it puts the persons ahead of the disability and describes what they have, not who they are.[ii] For the sake of stylistic variety, this book uses both kinds of language, even though this approach will satisfy neither side. I can only say that I mean no offense.
Autistic Not Weird’s [Chris] Bonnello periodically surveys the autistic community on a range of autism-related issues (his 2022 survey had more than 11,000 respondents, mostly from the UK and US, about two-thirds of whom were autistic). While in 2018 about 51% said they used Asperger’s syndrome in relation to their own personal situation or when discussing autism, in 2022 it had plummeted to under 19%. The Hans Asperger revelations occurred between the surveys, notes Bonnello, and while it isn’t personally why he moved away from Asperger’s, it was likely a big driver.
Yet while many self-advocates now embrace life on the spectrum, there are different views among experts about whether things are working quite as they should, and how to fix them. One issue is whether people who would have been diagnosed with Asperger’s previously are falling through the cracks under the new system. Fred Volkmar, a professor of child psychiatry at Yale University, led the group that first introduced Asperger’s under DSM-IV. (He was originally on the DSM-5 group but resigned over process issues.) A specific problem Volkmar still sees a decade on is that the definition of ASD was effectively made more stringent under DSM-5 – and people at the margins, who might have qualified for Asperger’s or atypical autism, are missing out on a diagnosis as a result. Those people need identifying too so they can get support. The reduction rate in diagnosis under DSM-5 for those with Asperger profiles was recently estimated, based on a meta-analysis of studies, to amount to about 23% – though Volkmar thinks the number is likely to be higher.
Yet Catherine Lord, a professor of psychiatry at UCLA, who was on the DSM-5 group, disputes that a significant minority of people are getting lost. The reality of DSM-5, she says, is that it simply just isn’t very specific. Symptoms, for example, don’t even have to be current (they can be historic). “Almost all of us, by history, would meet some of the criteria for autism,” she says.
“If people are slipping through the cracks, then other people are slipping in,” says Francesca Happé. Diagnosis rates have increased exponentially over the past 20 years in the UK, she says, with the biggest increases in women and people over the age of 19. And the best interpretation isn’t that DSM-5 has necessarily changed much but that diagnosis is being more widely applied and there’s a historical backlog (in the past, adult diagnosis was uncommon and it was seldom considered that women could have Asperger’s or autism)