The fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V), the main source of psychiatric information for American doctors, officially codified Autism Spectrum Disorder (ASD) in 2013. The creation of ASD was a response to the growing medical consensus that autism was a disorder encompassing a variety of conditions that affected individuals with varying degrees of severity. ASD gave practitioners a new framework in which to diagnose autism patients. There were no longer distinct modes of autism from Asperger’s to childhood disintegrative disorder — but the severity of autism was measured “on the spectrum.”
In the five years since the release of the DSM-V, “on the spectrum” has been taken up by the public and used to speak to socially, culturally, and, mentally divergent behavior. In other words, it’s been co-opted by non-professionals to explain away behavior considered odd. It’s wrong, yes, but also potentially damaging to people living with ASD whose disorder is increasingly misunderstood as it is weaponized.
Autism Spectrum Disorder wouldn’t be the first term to become weaponized slang. Look at the term “retarded.” Mental retardation was a common diagnosis used to label people with intellectual disabilities in the early twentieth century. Mental retardation was considered the more nuanced diagnosis, replacing “moron” and “idiot” in medical parlance. But as those terms fell out of medical usage, they remained a rhetorical cudgel for labeling people who scored low on IQ tests.
Broad deinstitutionalization in the 1970s meant that the public started to have greater contact with people affected by intellectual disabilities. At that time, the word “retarded” was still used as a medical diagnosis for anyone in the neurologically divergent community. But the term was quickly turned into an insult. Everyone knew what it meant — it meant being different, helpless, childlike and intellectually deficient in an intractable way. But more importantly, it meant that being perceived as having any of those qualities was a terrible thing.
The use of the r-word has become strictly taboo. That makes sense because people affected by intellectual and developmental disabilities are more integral parts of our communities. More exposure to neurologically diversity has created a progressive movement to recognize the abilities of all people. More care has been taken to understand people as individuals.
Like the term “mentally retarded,” the term “on the spectrum” is a refinement of a diagnosis. But where mental retardation was adopted because the previous words had become insulting, ASD came from doctors understanding there were no distinct genetic marker for specific autism disorders like “Asperger’s” and “Rett” syndrome. A generalized cause for similar behavior traits required an inclusive diagnosis that captured them all.
And that’s why the use of “on the spectrum” by laypeople to cast shade on weird behavior is all the more harmful. It harkens back the the bastardization of the term “retarded” as a way to demean people with a diagnosis while simultaneously demeaning people without a diagnosis. All of it stems from a deep lack of understanding about the lived experience of individuals with intellectual disabilities. “On the spectrum” may feel more harmless because it’s the more scientifically current term but instead, it’s warping a diagnosis and spreading disinformation in an aggressive manner.
As armchair diagnoses’ go, “on the spectrum” is more likely than not to be incorrect. A person who has trouble socializing should not be called “on the spectrum” — they might have generalized anxiety or depression or may simply be introverted. Someone who is process-oriented to a wild degree, like Sheldon on Big Bang Theory, is not necessarily on the spectrum. They might just be, well, process-oriented.
That’s why occupational therapist Diana Fitts, founder of The SensoryToobox.com notes that the pejorative use of “on the spectrum” is so hurtful. Fitts notes that aside from erasing the experience of people who actually live with ASD, using the term “on the spectrum” for people displaying any kind of atypical behavior can obscure real awareness of what ASD actually is. “This can make it really challenging for people with ASD to have their needs taken seriously,” says Fitts. It also undermines a public empathetic gesture as to what it means to live with autism.
She worries that “on the spectrum” might become the norm, much in the way other words have, like moron and idiot. She suggests the only real way to combat is through genuine questions that lead people, and particularly children, to real understanding about what it means to live with ASD.
But in the end, the real danger of using the term “on the spectrum” outside of a clinical context is that it erases the personhood not just of the person being labeled, but all the people who live with ASD too. It means that their unique perspectives and lives are placed behind the mask of a diagnosis and are therefore rendered beyond our concern.
“It’s ok to ask genuine, good-hearted questions and to let children do the same,” says Fitts. “Open up a space for learning and people will realize that, when using the term ‘on the spectrum,’ it may be more hurtful than they intend.”