A note on the use of “Asperger Syndrome”
What it means, why it's no longer used, and context on how it will and will not be used in this newsletter
Welcome to The Late Diagnosed Diaries, the bi-weekly-ish musings of a late-discovered autistic author and speaker, former journalist, and eternally curious human, featuring educational explanations, critical explorations, and vulnerable realizations, all seasoned with a teeny little dash of feminist rage.
Some of the resources linked to in The Late Diagnosed Diaries may refer to “Asperger Syndrome,” or “Asperger’s, although that has not been a recognized diagnosis since 2013 when it was absorbed into the diagnosis of “Autism” in the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5).
Some people who received an “Asperger Syndrome” diagnosis before 2013 continue to use it through the present day. Some feel it is core to their identity to continue to identify as an “Aspie,” and some still use it because they in some way take issue with the present-day use of “Autism” to refer to the same set of traits.
Still, I think it’s important to acknowledge the disturbing context of Hans Asberger’s work, much of which was conducted in WWII at the direction of the Third Reich.
Though there remains some debate about Asperger’s personal views and the level of sympathy he may have shown for his patients, there are also plenty of accepted facts that disturb, nonetheless:
Asperger was appointed by Nazis to serve as a doctor in Vienna during WWII, where he was tasked with assessing the mental fitness of children.
Asperger’s assessments were often used to inform decisions about euthanasia, forced sterilization, and other Nazi “race hygiene” actions and programs.
Asperger worked for, worked with, and was repeatedly promoted by vocal Nazi party members who advocated for eugenics and racial hygiene.
“The narrative of Asperger as a principled opponent of National Socialism and a courageous defender of his patients against Nazi ‘euthanasia’ and other race hygiene measures does not hold up in the face of the historical evidence. What emerges is a much more problematic role played by this pioneer of autism research. Future use of the eponym should reflect the troubling context of its origins in Nazi-era Vienna.“
Ethics, Collections, and History of Medicine, Medical University of Vienna, 2018
Given this context, there is plenty of valid criticism of the continued use of “Asperger Syndrome,” not least of which is the perception that its use is an ableist way to distinguish autistics with lower support needs (also called Level 1 Autism) from autistics with higher support needs (also called Level 2 or 3 Autism), despite the shared diagnosis.
Since Asperger’s has also been described as “mild Autism” or “Autism without intellectual disabilities,” it’s easy to see how the continued use of the term can be seen as contributing to the unnecessary and harmful separation and hierarchical ranking of Autistics.
So what does all this mean for The Late Diagnosed Diaries, and me?
I am Autistic. I am not an Aspie and I don’t have Asperger’s Syndrome. I do not consider it a compliment to be told that I do.
I don’t refer to individuals as Aspies or as having Asperger Syndrome unless I am respecting the explicit preference of someone who identifies that way.
When relevant, I may still refer to other media that use Aspergers or Aspies, or to media or organizations that use those terms in their name.
Here are some additional resources on this topic—from a variety of sources—if you’d like to explore it further:
“Asperger's Children: The Origins of Autism in Nazi Vienna,” By Edith Sheffer. (Here’s an overview and the author’s talk on the subject given at Google.)
“Hans Asperger, National Socialism, and ‘race hygiene’ in Nazi-era Vienna,“ Ethics, Collections, and History of Medicine, via National Library of Medicine
“The truth about Hans Asperger’s Nazi collusion,” Nature.com article
“DSM-5: What Happened to Asperger’s?“ Clay Center for Young Healthy Minds
“Why Asperger's Syndrome Is No Longer an Official Diagnosis,“ Very Well Health
“Understanding Why the Term ‘Asperger’s’ Is No Longer Used,” Healthline article
“We Need to Talk About Aspie Supremacists,“ Thinking Person’s Guide to Autism
“Binary Boys: Autism, Aspie Supremacy, and Post/Humanist Normativity,“ Disability Studies Quarterly