Why does AANE use the term “Asperger’s” when it is no longer an official diagnosis? Should “Asperger’s” continue to be used given what historians have learned about Hans Asperger?
These are just a couple of the many language-related questions AANE frequently fields from long-time and new community members. While exploring the AANE website and our other communications, you will see terms and phrases like autistic, Asperger profile, Aspie, on the spectrum, Autism Spectrum Disorder (ASD), Asperger Syndrome (AS), neurodivergent, and/or neurodiverse. We recognize that language surrounding autism has evolved and changed since our inception in the mid 90s. We would like to respond to these questions with some of our rationale.
The Origin of the AANE Name
In 1994, the diagnosis of Asperger Syndrome (AS) was introduced as an official diagnostic category in the Diagnostic and Statistical Manual, Fourth Edition (DSM-IV) by the American Psychiatric Association. The diagnostic criteria included a lack of speech delay, no pronounced cognitive or intellectual disability, and social communication challenges. Prior to the DSM-IV, people who had this profile were misunderstood and unrecognized as a group with unique needs. AANE was founded in 1996 and was originally named the Asperger Association of New England to represent the population the organization served.
AANE soon made efforts to replace the word “syndrome” with “profile” because “syndrome” failed to acknowledge that:
- Many people with Asperger profiles also have striking abilities, talents, and positive traits.
- Traits are not fixed or static. With education and support, people’s brains, behaviors, and skills can change over time.
- Judgments about people’s abilities are subjective. What seems like a challenge in one environment may be an asset in another context.
In 2015, the DSM-5 officially folded Asperger Syndrome into the umbrella diagnosis of Autism Spectrum Disorder (ASD). The organization felt it was appropriate to alter its name at that time to the “Asperger/Autism Network” to reflect this development and also to recognize its reach had expanded beyond New England. Knowing that AANE’s services addressed the very unique needs of people with Asperger profiles, we did not change who we served and kept “Asperger” in our name.
Many feel pride for and connection to their Asperger identity.
Numerous individuals who were diagnosed prior to the elimination of Asperger Syndrome from the DSM still refer to their diagnosis in this way, and colloquially may still refer to themselves as “Aspies.” Many people across the world, with and without diagnoses, continue to resonate with the term “Asperger,” and we wish to affirm this choice. Moreover, by keeping Asperger in our name, people searching for services that fit their specific needs and those from other countries where the term is still used as a diagnosis can find us.
We do not ascribe to the terms “high functioning” and “low functioning.”
We intentionally chose not to use the terms “high functioning” and “low functioning” to differentiate autistic people. We believe that people across the spectrum live with differences that cannot and should not be described as greater than or less than. Using terms such as “high” or “low” inevitably diminishes the needs of one group while ignoring the abilities of the other. Personalities, aptitudes, and sensitivities exist along many spectrums on multiple dimensions.
AANE celebrates neurodiversity.
Diagnostic labels, by nature, define disorders and tend to ignore the strengths, gifts, and adaptive benefits of the individuals diagnosed. In contrast to this, the Asperger constellation of traits can be described as one of many natural variations in human neurology that lead to differences in individual experiences, sensitivities, and perceptions. These variations are not neurological “dysfunctions,” rather, evidence of “differently” functioning neurology that often defies clear categorization. At AANE, we celebrate neurodiversity.
Official diagnosis is a pathway to support.
Neurodivergent people, including those with Asperger profiles, often face very real challenges navigating environments and systems predominantly designed by, and for, neurotypical people. Accommodations can provide significant improvements to well-being and quality of life and often require an official diagnosis. Current clinical convention is to diagnose people with Asperger profiles with an Autism Spectrum Disorder. Frequently clinicians make reference to Asperger’s as a qualifying term in their diagnostic reports, as it continues to be a relevant term to describe a specific constellation of needs.
We believe in critically examining, understanding, and sharing the historical implications of the term “Asperger.”
Hans Asperger was a clinician in the 1930s who described a population of children who had clinical presentation similar to what was defined in 1994 as Asperger Syndrome. More recently, a book has suggested that Hans Asperger was affiliated with Nazism in Germany, and that he attempted to save the children he worked with from perishing in the holocaust by distinguishing them from the autistic children identified by Dr. Kanner who had more intensive needs. If Dr. Asperger tried to save the children he diagnosed and made no attempts to save others, many could debate whether it was a commendable or condemnable act.
Dr. Frith (the woman who proposed the name Asperger Syndrome in the 90s (based on readings of Asperger’s historical writings) may not have had the full context of Asperger’s involvement with the Nazi’s. She recognized that he was describing a clinically relevant population (though we have learned he was not the first) that could benefit from deeper understanding, care, and compassion. Whether or not to continue using his name as a descriptor has sparked hours of discussion and contemplation for our organization, and it is an issue we and many others have not yet resolved.
We are committed to listening to our community.
We are following closely the landscape surrounding the use of the word Asperger to describe the population we serve. We have continued to engage our staff, clinicians, and our autistic community in a dialogue about whether or not to change our name, our mission statement, or other materials. We continue to evaluate and self-reflect on this issue. Every autistic individual has unique needs, and though not every organization can meet all of those needs, we firmly believe that every autistic individual deserves community and connection. Now more than ever, people are reaching out to us for our clinical expertise and our commitment to acceptance. However you identify, with an official diagnosis or not, we are here for you!