What’s in a Name?

Dania Jekel, Executive Director of AANE
Blog Post

Within the last month or so, a number of well-known people and celebrities disclosed that they (or their spouse) are on the autism spectrum. Several of these stories received tremendous exposure and represented a positive step in increasing the understanding of autism and its varied manifestations. We love the disclosure, which has brought more awareness and (more importantly) acceptance to the world of autism, but the wide variety of terms to name it illuminated one of the struggles many of us are experiencing in the autism community as a whole in recent years.

  • Bill Gross, the founder of PIMCO, disclosed in his Bloomberg interview by saying, “I’m an Asperger,” and “I have Asperger’s.”
  • Amy Schumer revealed the diagnosis in her special Growing by saying, “My husband was diagnosed with what used to be called Asperger’s. He has Autism Spectrum Disorder. He is on the spectrum.”
  • Greta Thunberg of Sweden, the 16 year-old climate change advocate, disclosed using the words “Asperger Syndrome.”  
  • When we speak with members of our adult community at AANE, some use the word “Asperger’s,” some say they are “autistic,” and others say they are “on the spectrum.”

With all of these terms swirling around in our society, we are all left with a very hard question: How do we clearly and accurately describe a particular profile among the vast range of expressions of autism?

Some of the differences in language are influenced by when a person was diagnosed, cultural differences, diagnostic terminology from other countries, and personal identification. Some feel passionately about their particular choice of words and equally passionate about rejecting or taking offence to other terms. But while I completely respect how a person chooses to identify oneself, I think this unclear and inconsistent use of language creates an ambiguity that can lead to misunderstanding and in some cases unintended consequences and barriers to support. Organizations such as ours as well as individuals, news outlets, and professionals struggle to find the appropriate language to use to accurately and respectfully differentiate between the variety of autism profiles. 

This has been an on-going organizational struggle for AANE. Our supports and services are based on years of working with individuals with what was previously known as Asperger Syndrome under the DSM 4. We know from our personal and professional experience that the expertise we offer varies greatly from the type of intervention which might be helpful to someone with a different profile.

But how do we (and others) let the community know where our expertise lies and who we have the ability to support? How do we convey to those with a similar profile that this is a community where you will find your peers, where you will find parents facing the same issues, that the leaders in a program like LifeMAP understand things like anxiety, executive functioning, and pragmatic language difficulties?

At AANE, we know what words we don’t want to use: disorder, disease, and syndrome. We also reject terms like “mild/severe autism” and “high functioning” and “low functioning” as it creates an arbitrary and false hierarchy of challenges and abilities. These terms are either demeaning or dismissive.

But we honestly don’t quite know what words to use instead. While we believe in a neurodiverse world, the term “neurodivergent” is too expansive because it includes all kinds of brain differences. Describing a profile by enumerating each kind of support needed is cumbersome.

Given this confusion, some people are using “autism spectrum” or just “on the spectrum” to indicate they have an Asperger profile and the word autism for those with more functional limitations. Of course this coded language doesn’t make any sense, and since it’s not official, it continues to create confusion.

At AANE, we often use the term “Asperger profile,” but that also creates issues since children are now being diagnosed with Autism Spectrum Disorder. Further, we feel the term “Asperger’s” has become problematic as historians have evidence of Dr. Asperger’s collusion with the Nazis as well as the fact that the profile was first described decades before by a female Russian doctor.

We continue to grapple with this situation, but here is my hope:

  • We find a way to create positive, non hierarchical, non pathologizing, non-judgmental language.
  • We keep autism as an umbrella term, but we find language to name distinct profiles or subcategories within the autism spectrum.

Of course, we acknowledge that over a lifetime individuals may move between subcategories and also the profiles will be general descriptions rather than a list of set diagnostic criteria. But if we can find the words to describe rather than impose implicit judgement, it will be easier for everyone to find relevant information, the necessary support, peers, and a compatible community.