Is It Asperger’s or Level 1 ASD?

May 14, 2021 — When billionaire Tesla founder Elon Musk revealed he has Asperger’s syndrome on his recent Saturday Night Live hosting gig, many applauded his transparency and the ability to speak about a condition that’s often stigmatized.

Others, while still appreciating the honesty, point out that Asperger’s is outdated terminology. It is no longer viewed as a diagnosis in the Diagnostic and Statistical Manual of Mental Disorders, the “bible” used by mental health professionals to diagnose conditions. Instead, it falls under the umbrella of autism spectrum disorder (ASD). The DSM was last updated in 2013.

ASD is now defined by the American Psychiatric Association as “a complex developmental condition that involves persistent challenges in social interaction, speech and nonverbal communication, and restricted/repetitive behaviors.” The association emphasizes that there is a wide range of abilities and characteristics in those who have the condition.

Asperger’s and several other similar disorders that were previously diagnosed separately are now termed ASD, says Matthew Siegel, MD, vice president of medical affairs for the developmental disorders service line at Maine Behavioral Healthcare in Portland, who specializes in the treatment of autism spectrum disorders. The primary reason the change was made was because doctors were unable to make reliable diagnoses of Asperger’s and several other autism-like conditions based on patients’ symptoms and presentation, which vary greatly, Siegel says. Researchers couldn’t reliably duplicate those different categories of autism in their studies, either, he says.

“So the decision was made to treat it as a spectrum disorder and try to encompass the significant differences across people who have autism,” Siegel says. The change in name recognizes this difference in severity among those with ASD, says Siegel, who’s also an associate professor of psychiatry and pediatrics at Tufts University School of Medicine. “We are rating the severity of symptoms instead of trying to parse that into different diagnoses.” Now, doctors diagnose ASD as level 1, 2, or 3, Siegel says, with level 1 the diagnosis for high-functioning patients with less severe issues. “The treatment should match the severity,” he says.

The new term is less derogatory, says Victor M. Fornari, MD, vice chair of child and adolescent psychiatry at Zucker Hillside Hospital in Glen Oaks, NY. “‘Autistic person’ sounds pejorative, rather than ASD, which reflects a broader spectrum. ASD reflects a more cohesive understanding of the disorder occurring along a continuum.”

As to why people hang onto the outdated term, Siegel says it may be the term used when they were first diagnosed.

“I think the thing that is exciting is that if Elon Musk is reporting he has autism — whether using an outdated term or not — is for the public to see a person lift the stigma about diagnoses like autism, by whatever name it is called,” he says. “And people can see that individuals with autism, some, can be quite successful and part of our society.”