Should we use the term Autism?
I am a psychologist who specializes in working with kids on the Autism spectrum. This population is near and dear to my heart as Autism runs in my family, but I also want these young men and women who are wired differently to grow up confidently in their identity. I don’t want my clients to feel disordered as I do not view the spectrum as a disorder.
The centerpiece of my work and philosophy is the emphasis on a person finding and embracing their identity as being on the spectrum. This includes identifying as either an Aspie (Asperger’s) or Autistic. I don’t consider either of these terms to be a label but more an identity.
Having one’s identity rooted in the spectrum can be complicated when society can interpret the words “Aspie” or “Autistic” as demeaning or harmful. In the past the word “Autism” was equated with “Retarded.” A friend of mine, Lindsey Stewart, who is a professional costume player (Cosplay) as well as a TEDx speaker spoke to identity perfectly in her TEDx Talk. She notes Batgirl was given her name by someone else. She did not choose her own identity. She calls this the issue of agency. Batwoman, on the other hand, chose her name and chose her identity. The name of Batwoman is her and hers alone.
Will you be named by others, or will you name yourself?
A Troubled History
When considering an identity, I provide my clients with a thorough history of how the terms Autism and Asperger’s originated and how they have been used over the past century. I am disheartened and struggle with the news Dr. Hans Asperger, who identified the spectrum mind in 1930’s Austria, was involved with the Nazi war machine and eugenics.
In the book, Asperger’s Children: The Origins of Autism in Nazi Vienna, the author (Edith Sheffer) explains how Dr. Asperger was involved in sending some children to their deaths during the 1930s. This time period was cultural fodder for eugenics which was a subject being openly discussed and implemented in Europe and the United States. Eugenics was not just a German phenomenon. Conferences were held in the United States extolling the virtues of exterminating inferior people, including the “mentally unfit.” In fact, in Illinos in 1931the Illinois Homeopathic Medicine Association argued for the right to euthanize "imbeciles." The Euthanasia Society of America was founded in 1938. To blame eugenics just on the Nazis is to excuse many other countries of trying to cleanse and purify human DNA based on racism and mental illness.
Sheffer demonstrated how Dr. Asperger, in keeping with the times, would save children whom he considered gifted. However, he referred other children to Aktion T4, a killing hospital, for children he deemed would be too much of a burden on their families. Dr. Hans Asperger was aware of what was occurring to his students. He knew they would die.
And so now I struggle using the term “Asperger’s” and “Aspie.” To complicate matters, I have always struggled with the word “Autism.”
Autism was previously defined as a developmental disorder where a child’s speech was significantly delayed and an individual’s IQ was measured as below 70, which is mentally impaired. Also, the man who “discovered” this kind of brain, Dr. Leo Kanner, blamed Autism on “cold mothering” and further suggesting these children should be institutionalized.
Dr. Leo Kanner was unwilling and too prideful to fully examine all of the research on this mind and refused to acknowledge Dr. Asperger’s work. Not only did he hire Dr. Asperger’s co-workers during World War II, he knew of his work. And he did not utter the man’s name until the 70s. Dr. Kanner’s work shamed thousands if not tens of thousands of families into institutionalizing children who were wired differently. As an example, in the 1960’s, Daryl Hannah, the actress from Blade Runner, was almost institutionalized until her mother refused and took her home allowing her to develop at her own pace.
The Autism field remained largely the same until a pediatrician, Dr. Lorna Wing came to the rescue. She completed her research in the 1980s about Autism and debunked the idea that cold parenting causes autism. Based on her advocacy and research, she identified children who had special interests, struggled socially, and had average to above-average intelligence. She described these kids as having Asperger’s Syndrome and introduced the term into the Diagnostic and Statistical Manual 4th (DSM-IV) in the early 1990s. She was not privy to the knowledge that Dr. Asperger’s was involved with eugenics and the Nazis. And, based on her work, tens if not hundreds of thousands of people around the world gained a positive identification with the word Asperger’s.
In 2013, the committee completing the Diagnostic and Statistical Manual 5th edition (DSM-V) turned the Asperger’s and Autism community upside. The committee concluded that Asperger’s does not exist. The reasoning behind this change is severely flawed and is not backed up by research. Much of the decision-making was based upon social engineering and insurance reasons. One specific example the committee gave for why Asperger’s no longer exists was that minority children received a diagnosis of pervasive developmental disorder while wealthy white children received a diagnosis of Asperger’s. What was not acknowledged by the committee is that pervasive developmental disorder was covered by insurance, while Asperger’s was not. This was an insurance decision and not based on empirical research. Not only did they return the word “disorder,” they told an entire generation of Aspies that they need to now be considered disordered. Even the description in the DSM-V is abusive.
“Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to-and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful.”
Finding identity in the negative historical narrative of research into Autism and Asperger’s leaves my clients and me very conflicted. In light of this conflict, I offer an alternative to the terms Autism and Asperger’s which I call The Lemon Continuum. How much metaphorical lemon you have in the water determines where find yourself on the Lemon Continuum.
With the historical perspective in place, I encourage my clients to identify with any or none of these terms independently. These terms are about agency. And ultimately, the spectrum community will come together and coalesce around terms and identities with which they feel comfortable. And I celebrate their efforts. I do not celebrate medical doctors and scientists hoisting labels upon them against their will or through ignorance and stereotypes.
Personally, I will continue to use my analogy of the Lemon Continuum as most of my clients seem to relate to that terminology. Lemons add flavor to water just as people on the Lemon Continuum provide flavor to humanity. I find they make a world far more interesting.