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To answer this question, it’s essential to take a brief look at the history of autism. Often presented as a comical historical anecdote about its near-simultaneous discovery in the work of two researchers, autism has more of a darkly nuanced and complex past. The following summary may therefore be difficult to read, and is simplified for context only.
A brief history – The discovery of autism
Autism is a complex profile whose understanding has evolved thanks to the contributions of many people. The “discovery” of autism is often associated with researchers Hans Asperger and Leo Kanner. While Kanner published an article in 1943 profiling children with similar characteristics in communication, repetitive behavior and socialization (presenting them as “infantile autistics”), Asperger published an article in 1944 describing children with atypical communication, specific interests and exceptional talents. He referred to them as “autistic psychopaths”.
It is important to note that many other people have contributed to the advancement of our understanding of autism. With the Matilda effect creating a tendency to recognize the work of men and minimize the contribution of women, it’s important to name Lorna Wing, Uta Frith, Olga Bogdashina and Temple Grandin, among others, as contributors.
Medical terminology and the introduction of “Asperger’s syndrome
Asperger’s syndrome is a diagnosis that was introduced in 1994 in the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) in the “Pervasive Developmental Disorders Not Otherwise Specified” section. This diagnosis was withdrawn in 2013 with the publication of the fifth edition (DSM-V). This withdrawal is often associated with the controversy surrounding Asperger’s involvement in the Nazi party. It’s important to remember that the withdrawal of the medical diagnosis is primarily rooted in issues of validity and classification.
- The diagnostic criteria for Asperger’s syndrome were subjective.
- The distinction between Asperger’s syndrome and other autistic profiles lacked clarity.
- Research suggests a more nuanced understanding of autistic profiles. A classification under the label “Autistic Spectrum Disorder (ASD)” was proposed with a view to simplification and harmonization, avoiding, among other things, clinical silos.
The DSM-V diagnostic proposal has given rise to a number of controversies. Despite the controversy surrounding Asperger’s, the withdrawal of the diagnosis has been criticized by many autistic people with an identity attachment to the term, as well as by professionals. Moreover, categorization into “severity levels” and functioning labels is problematic on several levels, including :
- Capatist foundations
- Stigmatizing stereotypes
- Undermining of self-determination and autonomy
- Simplification of autistic profiles
- Invalidation of needs
- A polarizing split
A brief look back in history – The controversy
What about this historically rooted controversy leads us to answer the question “Is it still called Asperger?” constituting the theme of this article?
Although Asperger’s links with the National Socialist Party are more ambivalent than frank, the literature on the subject provides an understanding of the influence of the Nazi Party’s eugenic and sexist ideologies in Asperger’s work. Among others, his favorable view of autistic boys, his perception of autistic intellectual superiority as beneficial to genetics and his contribution to the identification of children sent to the Am Spiegelgrund “sanatorium”, infamous for the murder of hundreds of children. His remarks recognizing the specific strengths and talents of autistic children are seen as part of the eugenic ideology seeking to identify and select desirable hereditary characteristics for future generations.
Language of identity – Aspie – and community
So is it still acceptable today to say Asperger when talking about autism? No consensus has been reached on this question, although a trend is emerging. Elements fuelling the debate include:
- A question about recognizing the legacy of Hans Asperger’s work: Is there a risk of losing knowledge if we wish to distance ourselves from Asperger’s work? Does this mean no longer mobilizing some of Asperger’s clinical proposals?
- A moral and ethical dilemma regarding the idea of paying tribute to a person who participated in the Nazi regime:
Does using the term amount to invisibilizing or minimizing this participation and the suffering experienced? - The shared knowledge surrounding the diagnostic term now withdrawn:
The term is more familiar to the general public and sometimes allows for a common language. Does the fact that the term is better known encourage dialogue, or does it further crystallize stereotypes and the splitting up of autistic profiles? - Individual preferences and the language of identity: The term Asperger’s – and its shortened version, Aspie – has enabled many people to feel represented and to develop a sense of belonging to a community. For some people, the term provides a preferable identification than the word “autistic”. This preference may change over time.
In conclusion
Finally, to answer the question, we encourage respect for each person’s identity preferences. This coexists with the tendency present in autistic and neurodivergent communities to avoid using the term Asperger’s to talk about autism, i.e. unless a person informs us of their preference and self-identification with the term Asperger or Aspie, it’s best to simply talk about autism. This allows for a more nuanced and inclusive representation of autism, while moving away from the problematic origins of the term.
To add to this, neurominorities favor identity-first language, i.e. talking about being “autistic” or an “autistic person” rather than “person with autism” or “ASD person”. The aim is to talk about autism as a positive source of identity, rather than reducing it to a medical aspect or deficit. It’s important to reiterate here that great variability exists within neurodivergent communities (as within any identity group). As a result, the individual is your reference point when it comes to identity preferences and the language you use to talk about yourself.
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References
Czech, H. Hans Asperger, National Socialism, and “race hygiene” in Nazi-era Vienna. Molecular Autism 9, 29 (2018). https://doi.org/10.1186/s13229-018-0208-6
Czech H. Response to ‘Non-complicit: Revisiting Hans Asperger’s Career in Nazi-era Vienna’. J Autism Dev Disord. 2019 Sep;49(9):3883-3887. doi: 10.1007/s10803-019-04106-w. PMID: 31197636; PMCID: PMC6667397.
Elkin, R. (2022). Higher or Lower? Why using functional labels to describe autism is problematic. https://psychiatry-uk.com/higher-or-lower-why-using-functional-labels-to-describe-autism-is-problematic/
Maher, E. C. (2021). Review of Asperger’s Children: The Origins of Autism in Nazi Vienna by Edith Sheffer. Disability Studies Quarterly, 41(1).
McPartland, J. C., Reichow, B., & Volkmar, F. R. (2012). Sensitivity and specificity of proposed DSM-5 diagnostic criteria for autism spectrum disorder. Journal of the American Academy of Child & Adolescent Psychiatry, 51(4), 368-383.
Sheffer, E. (2018). Asperger’s children: The origins of autism in Nazi Vienna. WW Norton & Company.
Taboas A, Doepke K, Zimmerman C. Preferences for identity-first versus person-first language in a US sample of autism stakeholders. Autism. 2023 Feb;27(2):565-570. doi: 10.1177/13623613221130845. Epub 2022 Oct 13. PMID: 36237135.
Williams, K. (2019). The Fallacy of Functioning Labels. https://www.ncmh.info/2019/04/04/fallacy-functioning-labels/
