Families with autistic children are calling for increased support and services as they navigate a complex landscape of care. While the Trump administration has promised to investigate potential causes and treatments for autism spectrum disorder (ASD), many parents feel that the focus should instead be on the lack of services available for adults with profound autism.
Under Health Secretary Robert F. Kennedy Jr., officials have suggested that factors such as folate deficiencies and acetaminophen use during pregnancy may contribute to ASD. However, no scientific consensus currently supports these claims. Families like the Quels are urging lawmakers to prioritize the needs of adults who require substantial support.
Rebecca Quel, a physician from Irwin, Pennsylvania, describes her three adult sons—Jacob, 23, Andrew, 20, and Stephen, 17—all of whom are profoundly autistic and nonverbal. Despite their challenges, Rebecca emphasizes that their condition is just one part of who they are. “There’s a preconception that because they can’t communicate that they’re not smart,” she explained.
The Quels have developed their own methods to communicate with their sons, interpreting facial expressions and vocalizations. For instance, Stephen often reacts to overwhelming situations by putting his hands in his hair, while Andrew expresses excitement by jumping up and down. Their eldest son, Jacob, resides in a care facility after becoming violent at home, a difficult decision made to safeguard the family’s well-being.
Rebecca expressed frustration with political rhetoric surrounding autism, particularly a recent statement from President Trump linking acetaminophen use during pregnancy to autism. “The last thing we needed was an announcement that laid more guilt on parents of autistic children,” she stated.
For families like the Quels, daily life revolves around ensuring their children’s needs are met. Maintaining a backyard trampoline has become essential, as it serves as a source of exercise and sensory regulation for Stephen. “For us, having their trampoline break is an emergency,” Rebecca noted. A structured routine, particularly in educational settings, is also vital for their sons’ well-being.
Both Andrew and Stephen attend specialized schools—The Children’s Institute of Pittsburgh and New Story School, respectively—where they receive therapies aimed at enhancing communication and motor skills. Yet, once they turn 22, they will lose access to these services. “Many of our parents will say it feels like falling off a cliff,” said Kristen Stackiewicz, associate chief school administrator at The Children’s Institute.
The transition to adulthood is fraught with uncertainty for families like the Quels. “Once they age out of school services, it becomes a battle to get anything,” Rebecca explained. “You’re on your own, basically.” Educational supervisor Maggie McMahon acknowledged the limited availability of day programs for adults, noting that many have shut down due to funding issues. “Sitting at home doing nothing is the worst-case scenario because our students thrive off socialization,” she said.
State Representative Dan Miller highlighted the moral obligation to support families with disabled loved ones. He emphasized that the legal protections afforded by an Individualized Education Program (IEP) vanish once students graduate, leaving families without a safety net. “They’re used to having these rights that are enforceable in court,” he noted.
Many services for individuals with autism are funded through Medicaid, specifically the Intellectual Disability/Autism Waiver. However, numerous families remain on lengthy waiting lists for assistance. In 2024, approximately 13,000 individuals were waiting for services, according to data from The PA Waiting List Campaign, which advocates for improved support. Miller stated that the urgency of a family’s situation often dictates how quickly they receive assistance.
Advocates like Miller are striving to connect families with available services through events like the annual “Disability Summit,” but he recognizes that one event cannot address the systemic issues at play. “It’s incredibly embarrassing for a state that has as much capability as we do here in Pennsylvania to allow this system to continue,” he remarked.
Some progress has been made under Governor Josh Shapiro, who has increased funding to reduce waiting lists for services. In the previous year, the state invested nearly $75 million to transition individuals from emergency waiting lists to support services, along with an additional $280 million to boost wages for direct support professionals. This funding has reportedly decreased waiting lists by 28%.
Despite these efforts, the Quels emphasize that the current system remains complex and costly. They face unique challenges that require tailored approaches. “There’s a very distinct difference in someone who is very high-functioning and can hold down a job,” Rebecca said, highlighting the diverse needs within the autism community.
As discussions continue about autism and its treatment, families like the Quels remind society that those with profound autism often require significant support and understanding. “Someone on one end of the spectrum does not need a cure or hope for that,” she said. “But on the other end, we might want that.”
