Families with autistic children are calling for increased support services, particularly for adults with profound autism, as the national conversation shifts towards understanding the condition. The Trump administration, under Health Secretary Robert F. Kennedy Jr., has proposed potential links between autism spectrum disorder and factors such as folate deficiencies and maternal use of acetaminophen. Yet, no scientific consensus exists on the disorder’s causes. As these discussions unfold, families like that of Rebecca Quel are urging lawmakers to prioritize essential services for their loved ones.
Rebecca Quel, a physician from Irwin, Pennsylvania, describes her three adult sons with pride. Each son—Jacob, 23, Andrew, 20, and Stephen, 17—faces unique challenges with profound autism. They are nonverbal and require constant support. “There’s a preconception that because they can’t communicate, they’re not smart,” she noted, emphasizing that her sons communicate through facial expressions, vocalizations, and basic sign language.
While Andrew and Stephen live at home, Jacob resides in a care facility due to escalating violence at home starting around age 11. The decision to place Jacob in care highlights the difficult choices families face to ensure safety and quality of life. David Quel, Rebecca’s husband and an educational consultant, remarked on the lack of understanding from those who do not experience these challenges firsthand.
The Quel family also grapples with the emotional toll of societal perceptions surrounding autism. Rebecca cited a recent press conference by President Trump, promoting an unproven link between acetaminophen during pregnancy and autism, as an additional source of guilt for parents. “It’s just a terrible burden that they placed on this population without one shred of scientific evidence,” she said.
Activities at home illustrate the family’s commitment to maintaining a supportive environment. The upkeep of a backyard trampoline has become essential; for the Quels, a broken trampoline constitutes an emergency. Stephen frequents the trampoline after school, where sensory activities can help manage his mood.
Routine plays a critical role in the lives of the Quels. David emphasized that structure is vital, particularly in the classroom setting, where both Andrew and Stephen receive tailored education. They attend The Children’s Institute of Pittsburgh and New Story School, two of the 37 licensed Approved Private Schools in Pennsylvania. These institutions provide essential therapies aimed at enhancing communication and motor skills, leading to meaningful progress and social interactions.
However, upon turning 22, students lose access to these critical 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. Families face a daunting transition as they seek to navigate the complexities of adult support services, which often feel inaccessible once educational rights expire.
Maggie McMahon, an educational supervisor at The Children’s Institute, aids in the transition for older students, aiming for them to enter day programs that encourage community engagement. Unfortunately, options are limited. Many programs are closing due to funding shortages, forcing families into a “game of chess” to secure the support they need.
State Representative Dan Miller, who represents Pittsburgh’s southern suburbs, acknowledges the difficulties families face after graduation. Without the legal protections of an Individualized Education Program (IEP), many find themselves without guaranteed support. “There’s a degree of safety and positive progress that they’re able to monitor routinely,” he stated.
While some services are funded through Medicaid, many families remain on lengthy waiting lists. In 2024, approximately 13,000 individuals in Pennsylvania were waiting for support, as reported by The PA Waiting List Campaign. Miller explained that the urgency of a case often determines how quickly assistance is provided. Families are left to piece together care, hoping they can navigate the system before support becomes critical.
Amid these challenges, Miller organizes an annual “Disability Summit” to connect families with service resources. Yet, he acknowledges that a single event cannot address the systemic issues at play. Recent improvements under Governor Josh Shapiro include nearly $75 million invested to transition 1,500 individuals from the emergency waiting list to services and an additional $280 million to increase wages for direct support professionals (DSPs).
Despite these advancements, the Quels highlight the ongoing difficulties in securing appropriate services for their sons. Each individual on the autism spectrum is unique, and the support required varies significantly. “There’s a very distinct difference in someone who is very high-functioning and can hold down a job,” Rebecca explained, contrasting this with the needs of her son Andrew, who faces serious health challenges.
As the national dialogue continues to evolve, families like the Quels stress the importance of comprehensive support tailored to the unique needs of each individual on the autism spectrum. The complexities of autism require a multifaceted approach, ensuring that all individuals, regardless of their level of functioning, receive the care and understanding they deserve.
