Families with profoundly autistic children are facing a growing crisis as they navigate the complexities of care and support. While the current administration has promised to explore the causes and treatments of autism spectrum disorder (ASD), parents emphasize the urgent need for improved services for adults with significant disabilities. Under the leadership of Health Secretary Robert F. Kennedy Jr., health officials have pointed to potential links between folate deficiencies and acetaminophen use during pregnancy as contributing factors to ASD. However, a clear scientific consensus on the causes remains elusive.
Rebecca Quel, a physician from Pittsburgh, describes her three adult sons, all profoundly autistic, with pride. “Andrew is my artist… Stephen is my outdoor guy… [and] Jacob loves to eat,” she shares. At ages 23, 20, and 17, Jacob, Andrew, and Stephen are nonverbal and require constant support. Rebecca highlights the misconception that nonverbal individuals lack intelligence. “There’s a preconception that because they can’t communicate that they’re not smart,” she states. The Quels have developed their own ways of understanding their sons’ needs through facial expressions, vocalizations, and basic sign language.
Jacob’s care has been particularly challenging. After he became violent at home around age 11, he moved to a care facility, a decision that weighs heavily on Rebecca and her husband, David. “It’s a struggle many people fail to comprehend if they haven’t experienced it themselves,” David notes. Parenting children with profound autism often comes with a heavy emotional burden, exacerbated by political rhetoric surrounding autism. Rebecca criticizes President Trump’s earlier statements linking acetaminophen use during pregnancy to autism development, saying, “The last thing we needed was an announcement that laid more guilt on parents of autistic children.”
The family’s priorities revolve around ensuring the best quality of life for their sons. For example, maintaining a backyard trampoline has become essential. “For us having their trampoline break, that’s an emergency,” Rebecca explains. Stephen enjoys bouncing on the trampoline after school, benefiting from the sensory activity that can help regulate mood. Routine and structure are vital for the boys, with David noting, “The more structure they have, the more they like it.”
Stephen attends The Children’s Institute of Pittsburgh, while Andrew is enrolled at New Story School in Monroeville, both institutions providing specialized education services for children with disabilities. These schools offer therapies that promote communication and motor skills, encouraging independence in daily tasks. However, once students turn 22, they lose access to these vital services. Kristen Stackiewicz, associate chief school administrator with The Children’s Institute, describes the transition as feeling like “falling off a cliff” for many families.
Rebecca dreads this impending transition. “Once they age out of school services, it becomes a battle to get anything,” she points out. With the loss of educational support, families often find themselves adrift. Maggie McMahon, an educational supervisor at The Children’s Institute, emphasizes the importance of finding appropriate day programs for adults, which are increasingly scarce due to funding shortages. “Sitting at home doing nothing is the worst-case scenario because our students do thrive off of socialization,” she states.
Some lawmakers are beginning to recognize the gaps in adult services. State Representative Dan Miller notes that families often feel their support systems deteriorate once their children graduate. He highlights the lack of enforceable rights outside of Individualized Education Programs (IEPs), which can lead to uncertainty about continued support. “There’s a degree of safety and positive progress that they’re able to monitor routinely,” he says.
Many essential services are funded through Medicaid, including the Intellectual Disability/Autism Waiver, which offers personal assistance and community integration. Unfortunately, many families face long waiting lists for these services. In 2024, approximately 13,000 individuals were waiting for support, according to the PA Waiting List Campaign. Miller explains that the urgency of an individual’s situation often dictates their place on the waiting list. “The distinguishing factor … is how likely is their family support system going to die in the next 12 months,” he adds.
To address these issues, Miller organizes an annual “Disability Summit” aimed at connecting families with available resources. Yet, he acknowledges that a single event cannot fill the systemic gaps in support. “It’s incredibly embarrassing for a state that has as much capability as we do here in Pennsylvania, for us to morally allow this system to continue,” he states.
Progress has been made under Governor Josh Shapiro, who has increased funding to reduce waiting lists and improve services. Pennsylvania invested nearly $75 million last year to transition 1,500 individuals from emergency waiting lists. An additional $280 million was allocated to raise wages for direct support professionals (DSPs). According to the governor’s office, these efforts reduced waiting lists by 28%.
Despite these advancements, navigating the existing systems remains daunting for the Quels. Each person on the autism spectrum is unique, and a one-size-fits-all approach to care is ineffective. Rebecca articulates the stark differences between individuals with varying needs. “There’s a very distinct difference in someone who is very high-functioning and can hold down a job… [and] someone like Andrew who swallows magnets that form a fistula in his intestines,” she explains.
Rebecca believes that while some individuals on the spectrum gain recognition and success, those with profound needs often remain overlooked. “Someone on the one end of the spectrum does not need a cure or hope for that,” she asserts, “but on the other [end], we might want that.” As families like the Quels continue to advocate for better services and support, the need for systemic change in the treatment of adults with autism becomes increasingly urgent.
