From a very early age, Scarlett Adams spent a lot of time in what her parents called “Scarlett World,” where she would not speak and rarely made eye contact. When someone called her name, she wouldn’t respond, and she resisted being hugged or held, even by her parents.
“She wouldn’t really play with toys,” her mom, Taylor Ruvolo, recalled. “She would just throw them around. She would rather play with a water bottle.”
When Ruvolo and Scarlett’s father, Andrew Adams, tried to break into their daughter’s world, they found little success. At age 18 months, Scarlett was diagnosed with autism spectrum disorder, a neurological and developmental disorder that can profoundly affect communication, learning, behavior, and interactions with others.
One of Scarlett’s therapists suggested trying a program called Project ImPACT, which teaches parents and caregivers proven strategies to help improve their child’s communication, social skills, and behavior.
Scarlett’s parents agreed without hesitation.
Supporting children and their parents
While families of young children with autism typically spend countless hours with a multidisciplinary care team of physicians, therapists, behavioral specialists, teachers, and social workers, parents are often the ones who have the greatest influence throughout their child’s life. However, most parents have no special training or expertise in how to support their child.
Melanie Pellecchia, PhD, BCBA, NCSP, an assistant professor of Psychology in Psychiatry at the Perelman School of Medicine, works with the Penn Center for Mental Health to expand access to caregiver coaching, an approach that is shown to support learning and growth in children with autism, while also empowering their parents.
“Parents are children’s primary teachers—forever,” she said. “For parents to be able to learn skills when their child is young to help support and empower their independence throughout their life is really powerful.”
Pellecchia serves as principal investigator for a research study that recently secured a $3.8 million grant to bring caregiver coaching to hundreds of Philadelphia children and families. The five-year study is something Pellecchia believes has the potential to transform the services that are available to young children with autism in Philadelphia.
The importance of early intervention
Living with autism can be challenging for any family, no matter where they live. However, many families from an urban setting like Philadelphia face additional barriers that can limit their ability to access services.
In Philadelphia, the Department of Behavioral Health and Intellectual disAbility Services’ Infant Toddler Early Intervention (ITEI) administers these services to children from birth to age three. Families transition to preschool Early Intervention, administered by Elwyn Early Learning Services, if their child continues to need special education at age three and beyond.
Each year, an estimated 1,700 Philadelphia children, from infants to age five, receive services under an autism spectrum disorder category. ITEI Associate Director Jeannette Newman, PhD, said access to services in those early years is critical. Research shows that early intervention improves long-term outcomes, including cognitive function, language skills, challenging behavior, and success in school.
“As soon as we establish that a child has or is at risk for autism, we want to get started on an evidence-based intervention,” she said. “Research into early brain development shows that there are lots of connections made in those early years. We try to maximize that learning time.”
Interventions that are led by parents or other caregivers are shown to improve outcomes for both children and parents, Pellecchia added. Caregiver coaching is a key component of those interventions, but for a number of reasons, it can be challenging to implement within a publicly funded Early Intervention program.
In 2016, ITEI and Penn established a partnership with the goal of improving large-scale implementation of evidence-based interventions, including caregiver coaching, for children and families in Philadelphia, eventually choosing Project ImPACT.
“Our commitment is that all families in Infant Toddler Early Intervention will have access to high-quality, evidence-based interventions,” Newman said. “The strategies that are part of Project ImPACT have been found to be the most effective for young children who have or are at risk for autism spectrum disorder.”
While Project ImPACT utilizes what are considered gold standard interventions for young children with autism, much of the research evaluating those interventions was conducted in tightly controlled, randomized trials, Pellecchia said. The characteristics of the participants in those trials differ significantly from most families who receive publicly funded services in Philadelphia.
She and the team expected that implementing Project ImPACT in the “real world” would come with some additional challenges.
In 2020, Penn and ITEI began a pilot study of 61 children and their families, funded by a grant from the Eagles Autism Foundation. The pilot study involved training 18 Early Interventionists in Project ImPACT, so they could then share those strategies with caregivers through in-home coaching sessions over a period of six months.
Project ImPACT focuses on teaching caregivers how to support children during regular daily activities. Interventionists, who can be teachers, speech or occupational therapists, or other professionals, follow a collaborative approach, taking care to understand each family’s unique challenges and goals.
When Project ImPACT was delivered as described in the intervention manual, the program’s successes were clear, Pellecchia said. When interventionists implemented the program as it was designed, children in the pilot study showed improvements in social and communication skills. Parents reported that coaching helped them to better understand and support their child, with more than one calling it “life-changing.”
However, there was a great deal of variability in how interventionists used the approach. Pellecchia and the team identified a number of barriers to success, ranging from training needs to implicit bias on the part of those selecting families for the program.
Even so, the team was encouraged by the positive results, and motivated to implement the successful strategies on a larger scale. They began to explore how to bring Project ImPACT to a greater number of Philadelphia children.
“We know this approach leads to better outcomes for kids,” Pellechia said. “We want to make it accessible to all families.”
Building bridges for children and families
Pellecchia’s study will enroll 200 Early Interventionists and 400 families, with a goal of improved implementation of caregiver coaching and improved outcomes for children.
The team developed a toolkit, Parent Empowerment and Coaching in Early Intervention (PEACE), to help interventionists working in public service systems to implement the program. Interventionists in the study will randomly receive different levels of training and support.
In addition to continuing to study outcomes for children and families, Pellecchia hopes to determine how much support is necessary for interventionists to successfully use caregiver coaching. Then, by coming up with ways to make the approach more cost-effective, they can eventually help more children and families.
The grant will also help to create a first-of-its-kind service bridge between ITEI and Elwyn. Project ImPACT can be used for children ages up to five years old, improving continuity of care and easing the transition for families once the child turns three.
“What we learn from this study will further our efforts to ensure that all children have access to the same high-quality services,” Pellecchia said. “There is the potential to create significant, lasting change in the care that is offered publicly for children with autism in Philadelphia.”
Making her own impact
Scarlett, now five years old and in kindergarten, spends a lot less time in Scarlett World these days. Ruvolo credits what the family learned through the Project ImPACT pilot for much of her daughter’s progress.
The program has changed Ruvolo’s life too, inspiring her to enroll in college and become an occupational therapist. She hopes to one day make her own impact on children like her daughter.
“They taught us all these techniques that really helped us,” she said. “I feel like the lessons we learned will always stick with us.”
The family, and especially Scarlett, determined how the sessions unfolded. The interventionist started by giving her a box of toys to explore. If she put the blocks on her head, that was okay. They made a silly game out of imitating her, which subtly encouraged her to make eye contact.
Scarlett’s parents also learned to resist the temptation to avoid a meltdown by giving in. Often, they found that if they waited a few minutes, she would do what was asked of her.
When Scarlett began the program, she could sit still for less than a minute. Now she can focus on an activity for up to 10 minutes, especially if it’s a puzzle. While she remains nonverbal, she shows more emotions—and when her parents walk into a room, she definitely notices.