Spend five minutes with Andy Novis, and it’s clear he’s a man obsessed by his passions. Novis’ West Medford apartment is packed with marathon bibs—he’s run Boston alone a whopping 22 times—and the boldly colored, intricate paintings he creates en masse.
Back in 2012, Novis was diagnosed with Asperger syndrome. That helped him to understand his intense dedication to certain pursuits—and to make sense of other, more difficult parts of his life.
“When I was growing up, some of the idiosyncrasies I had drove my parents crazy—especially my father, who never understood why I was the way I was,” Novis recalls. “I’d wander around, kind of in my own little world, flap my hands and stuff. That’s an Asperger’s trait. That’s what kids with Asperger’s do.”
When he shared his new diagnosis with friends and family, Novis stressed that Asperger's isn’t a disability.
“We can work, we can get married, we can have kids,” Novis says. “We can do everything that neurotypical people do. There is no limit!”
But that optimism was shaken when the latest edition of the influential Diagnostic and Statistical Manual of Mental Disorders eliminated Asperger’s as a diagnosis—folding individuals like Novis into the new category of Autism Spectrum Disorder.
It’s a change Novis refuses to accept.
"Full-blown autism could be considered a disorder, because it prevents people who have it from fully functioning," he explained.
“Another thing is the medication factor,” Novis said. “There are medications for people with full-blown autism. Asperger’s, you can’t treat it with these chemical cocktails. So it’s not a disorder. It’s a different—different ability, is what I like to call it.”
But not everyone is so resistant to the new category.
Karen Lean Boyd was diagnosed with Asperger’s five years ago—but says that diagnosis didn’t capture her own struggle with sensory overload.
“I’m trying to talk to you, and the noises in environment are basically just as loud,” Boyd says. “Being in a park, it’s pretty easy to still focus. But if we were in a restaurant, I pretty much would not be able to sustain the conversation.”
In contrast, Boyd says, the DSM-5’s new diagnosis of Autism Spectrum Disorder acknowledges the difficulty that many individuals like her have processing sensory stimuli—which she considers key piece of her condition.
“From my perspective, a lot of the other communication and social difficulties I experience with autism come out of sensory processing,” Boyd says. “I’m overwhelmed by the environment so much of the time that it’s harder for me to pay attention to the nonverbal signals, or the subtexts of the conversation. That’s just an example of how I think they’re interlinked.
Boyd also contends that when people with Asperger’s balk at being called autistic, there’s a measure of elitism involved.
“I think the high-functioning, low-functioning dichotomy is just a false one,” Boyd said, noting that some nonverbal individuals with autism are highly intelligent.
“’I can dress myself,’ or ‘I can use the bathroom,’ or ‘I can speak’—I think those are really problematic, ableist ways of thinking,” she adds.
But for people like Novis, they’ve also been a source of comfort. Now, as Novis strives to achieve goals like marriage and fatherhood, that consolation is gone.
“I feel like I’m being undermined,” Novis said of DSM-5's elimination of Asperger's. “My case is being weakened. The rug is being pulled out from under me.”
And that’s a testament to just how powerful the DSM really is.