Families with autistic children are raising urgent concerns about the lack of services available for adults with profound autism. Despite recent government pledges for a better understanding of autism spectrum disorder, many of these families feel overlooked and unsupported.
The Trump administration, under the leadership of Health Secretary Robert F. Kennedy Jr., has indicated potential links between autism and factors such as folate deficiencies and maternal use of acetaminophen. However, no scientific consensus exists regarding the causes of autism. Amid these discussions, families like the Quels are calling for attention to the inadequate support systems for adults living with severe autism.
Rebecca Quel, a physician from Pittsburgh, proudly describes her three adult sons—Jacob, 23; Andrew, 20; and Stephen, 17—all of whom are profoundly autistic and nonverbal. They require constant support, which has shaped the family’s daily life. Rebecca emphasizes that autism is only one aspect of her children’s identities. “There’s a preconception that because they can’t communicate they’re not smart,” she said.
Communication for the Quels is a nuanced process. Rebecca and her husband, David Quel, an educational consultant, interpret their sons’ needs through facial expressions, vocalizations, and basic sign language. For instance, Stephen shows distress by pulling at his hair, while Andrew expresses excitement by jumping. Despite the challenges, the family strives to create a nurturing environment.
The family’s situation became more complex when Jacob exhibited violent behavior at home around the age of 11, prompting the decision to place him in a specialized care facility. “It’s a struggle many people fail to comprehend if they haven’t experienced it themselves,” David noted. This decision illustrates the difficult choices that families face when balancing the quality of life for their children and themselves.
Political rhetoric surrounding autism causes has added to the stress for families. Rebecca expressed frustration with remarks made by President Trump regarding unproven links between acetaminophen use during pregnancy and autism. “The last thing we needed was an announcement that laid more guilt on parents of autistic children,” she said.
In their daily lives, the Quels prioritize their sons’ happiness and well-being. For example, maintaining a backyard trampoline is essential, as it serves as a source of joy and physical activity for Stephen. “For us, having their trampoline break is an emergency,” Rebecca remarked.
Routine and structure are crucial for their sons, particularly in a school setting. Stephen attends The Children’s Institute of Pittsburgh, and Andrew is enrolled at New Story School. These schools offer essential special education services, but both boys will age out of these programs when they turn 22. “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.
Once students reach the age limit, they lose access to vital support, making transitions particularly daunting. “It becomes a battle to get anything,” Rebecca stated. Educational supervisor Maggie McMahon noted that day programs for adults with autism are scarce, and many are closing due to funding issues.
State Representative Dan Miller highlighted the frustrations families face as they navigate the lack of consistent support. “Without the legal protections of an Individualized Education Program (IEP), it’s impossible to guarantee that same level of support,” he explained. He believes the state has a moral obligation to assist families in securing necessary services.
Many programs are funded through Medicaid, including the Intellectual Disability/Autism Waiver, which provides various forms of assistance. Unfortunately, long waiting lists plague these services. As of 2024, approximately 13,000 individuals were on waiting lists in Pennsylvania, according to the PA Waiting List Campaign, which advocates for improved services.
Miller pointed out that the urgency of a case is often determined by the likelihood of a family support system failing within a year. Families often find themselves piecing together resources while trying to navigate bureaucratic hurdles. “Parents are trying to play a game of chess to figure out which waiver is more likely to connect them to support services quicker,” he explained.
In response to these challenges, Miller organizes the annual Disability Summit, which connects families with resources and professionals. However, he acknowledges that a single event cannot address the systemic gaps in support for these families.
Recent efforts by Governor Josh Shapiro to enhance funding for disability services have shown some progress. In the past year, Pennsylvania allocated nearly $75 million to transition individuals from emergency waiting lists into services, along with an additional $280 million to increase wages for direct support professionals (DSPs). According to Shapiro’s office, these initiatives have reduced waiting lists by 28%.
Despite these advances, Rebecca and David stress that navigating the existing systems remains challenging and costly. They also emphasize the unique needs of each individual on the autism spectrum. “There’s a very distinct difference in someone who is very high-functioning and can hold down a job… and someone like Andrew, who requires significant support,” Rebecca stated.
The conversation around autism often highlights successful individuals, such as billionaires Elon Musk and Bill Gates, but Rebecca feels that those with profound needs are frequently overlooked. “Someone on the one end of the spectrum does not need a cure or hope for that. But on the other, we might want that,” she said, underscoring the diverse spectrum of needs among individuals with autism.
The challenges faced by families like the Quels reveal a pressing need for comprehensive support systems for adults living with autism. As discussions continue around the causes and treatment of autism, the voices of families seeking better services and understanding remain critical.
