Travis Plakke doesn’t dawdle in the grocery store. There’s no perusing the aisles or bantering with the cashier. He aims to be in and out in 15 minutes. It’s not because Plakke has an aversion to picking out produce and canned goods. Rather, the space itself has a visceral effect on the 49-year-old: The flickering fluorescent lights are so distracting, he has to wear a hat pulled down low. When another shopper gets too close, Plakke’s skin begins to crawl, and his brain sometimes feels like it’s filled with static electricity. Just talking about the experience makes him sweaty and anxious.
“I always say, Do everything with intent. Everything I do, I’ve got a reason for. I’ve thought about it,” Plakke says. He applies this philosophy not just to the prosaic act of buying food, but to his entire life. It wasn’t until about seven years ago, however, that Plakke understood why his mind worked that way. That was when he was officially diagnosed with autism spectrum disorder.
Although autism has become more widely discussed in recent years, the term was only included in the Diagnostic and Statistical Manual of Mental Disorders, the authoritative handbook for health professionals in the United States, in 1980. Because the world’s understanding of autism is still emerging, much of the research since then has centered on children and early intervention, meaning adults with autism have been largely overlooked. However, in May 2020, the Centers for Disease Control and Prevention estimated that nearly 5.5 million American adults—or 2.21 percent of the country’s population, a significantly higher proportion of which are men—are on the autism spectrum. An additional 50,000 or so adolescents with autism age into adulthood every year.
One local organization is hoping to bring more attention to this growing demographic. In late 2020, Firefly Autism, an autism treatment center in Lakewood, launched a program to help adults with autism improve their social and emotional skill sets. “One of the biggest misconceptions out there…is that somehow children grow out of autism,” says executive director and CEO Jesse Ogas. “The fact of the matter is that when you have autism, you have autism for life.”
The remnants of an early season snowstorm melt from the trees outside of Firefly Autism’s two-tone brick exterior. On this September morning, children from 18 months to 21 years old are working with board-certified behavioral analysts and technicians—younger students on the ground floor, older students on the second. (The nonprofit moved into the retrofitted former school in late June.) Soon, the building will hum on some evenings too. Firefly’s Adult Social Groups program, which is designed to serve individuals 18 and older with high-functioning autism, will take over the education and research wing for an hour one night a week.
Autism spectrum disorder is a neurological and developmental disorder that presents early in childhood; it is referred to as a spectrum disorder because of the wide range of symptoms people experience, from severe verbal impairments and potentially aggressive behaviors (defined as Level 3) to atypical social skills requiring minimal support (Level 1). It’s common for adults with Level 1 autism to struggle with communication and social interactions; to become hyper-focused on specific topics or routines; and to experience sensory sensitivities. These indicators can be minor, or adults may have learned to adapt and cope with any so-called differences over the years, making diagnoses at older ages more difficult. As a result, services and treatments to help this population have been severely lacking. “Many autistic adults…probably slipped through the net because they weren’t as easily identifiable,” says Wenn Lawson, a psychologist and world-renowned adult autism expert based in Australia.
Firefly’s program is debuting with a focus on individuals who are considered high-functioning—they are able to communicate and may be in school or working full time but could still benefit from, for example, learning how to more successfully integrate into an office setting or strike up conversations with strangers. The weekly meetings focus on goal setting, social and emotional skills development, and practical tools like job readiness—all based around each person’s ambitions. “There are a lot of individuals who are suffering and a lot of caregivers who are suffering because they don’t really have anywhere to turn when their children become adults and those pieces are still problematic,” says Amanda Kelly, who conceived of and is leading the Adult Social Groups program in her role as director of clinical services at Firefly.
Initiatives like this are sparse not just because few providers are trained to work specifically with adults, but also for bureaucratic reasons: Funding is aimed at youth, and insurance companies rarely cover services for people with autism over the age of 21, particularly if their autism is less severe. (For now, Firefly is charging $10 per session to cover basic costs, and Kelly hopes the nonprofit will eventually secure grants to help the program expand to serve adults across the spectrum.)
Research on the efficacy of these sorts of interventions is limited. A U.S. Government Accountability Office report found that between 2008 and 2012, only one percent of more than $200 million in federal research funding for autism focused on adulthood. Yet the need for adult treatment seems to be growing, as improved awareness and better testing methods are helping more adults put a name to their experiences. In fact, Firefly recently launched a diagnostic center for children and adults to help identify the very people who could benefit from its services.
On a fall evening, Kelly met with a handful of adults (all wore masks and completed health checks prior to the session) ranging from 20 years old to their early 40s on Firefly’s second floor. They likely joined the Adult Social Groups program in the hopes of, say, improving their job interview skills or figuring out how to navigate a first date or developing tools to help them become less rigid in their routines. “Some of the primary concerns [are] more complex social interactions—really having an understanding of the perspectives and motivations of others and knowing what is socially appropriate versus not,” Kelly says. Her goal is to help teach participants adaptive alternative skills, or more constructive means of responding to their specific struggles.
Also at the core of efforts like Firefly’s is a mission to foster community and build peer groups. Research shows that nearly 70 percent of individuals with autism have at least one co-occurring mental health concern, such as depression or anxiety. These can lead to an increase in suicidal ideation and self-injury, disrupt sleep, cause a person to isolate himself, and generally reduce quality of life. Strong relationships can help counter some of these troubling effects. “Once my autism was understood and I began to connect to others, then it was like I found my tribe, I found my community,” says Lawson, who was diagnosed with autism at age 42. “I came home.”
Plakke, who works in commercial real estate and is on Firefly’s board, had a similar experience. “Understanding that, This is how I think, this is what I’m working with, has really allowed me to come into my own,” Plakke says. He hopes Firefly’s Adult Social Groups program will foster the same kind of outcomes for its participants. “We’re not trying to change anybody. We’re trying to give tools,” he says. “The biggest thing is knowing there’s a community out there—there are other people out there like you.”