Research Heroes: Empowering the Autism Community With Anthony and Andrea Solari

Anthony Solari at a Philadelphia Phillies game. (Image Credit: Andrea Solari)

By Jillian Rose Lim

Editor's Note: Without the generosity and dedication of families, patients, and members of the public who take the time to be a part of research, many of our scientific advances would not be possible. This occasional blog series, in partnership with the Recruitment Enhancement Core (REC) at CHOP, features the stories of our research heroes who have participated in studies or our Research Family Partners program.

Andrea Solari knows her son, 20-year-old Anthony, almost as well as she knows herself. She knows Anthony thrives on checklists and routines, finds passion in helping others with autism spectrum disorder (ASD), and has a unique way of connecting with people whether he's at camp, college, or the baseball field. Andrea knows Anthony's bright future includes exciting goals like visiting every Major League Baseball stadium, learning to drive, and coaching high school baseball. Twenty years ago, however, these facts and future dreams were unclear.

At 9-months-old in 2003, Anthony was failing to meet developmental milestones, did not make eye contact, and arched away when Andrea reached for him. As the months passed, he appeared to be nonverbal, prone to meltdowns, and combative with physical and speech therapists. Andrea suspected ASD but could not get Anthony the appropriate behavioral therapy without a diagnosis.

Nevertheless, she persisted. Working in CHOP's Pediatric Intensive Care Unit (PICU) for 18 years, Andrea learned about Susan Levy, MD, MPH, medical director of the Center for Autism Research (CAR). Dr. Levy studied the early identification of children with ASD, its epidemiology, and complementary and alternative medical treatments. After reaching out to Dr. Levy, the Solaris secured an appointment when Anthony turned 2 years old.

"I remember the nurse practitioner drew an arch [of the] autism spectrum, with mild ASD on one side and severe on the other," Andrea said. "And she put a line in between middle and severe, and I went into panic mode. The nurse said, 'We don't know how he's going to be. We don't know if he'll ever walk or talk or learn.' I just remember crying but then thinking to myself: At least I know. At least now we can do something."

That "something" turned out to be much more than showing up for appointments at CHOP's Wood Center or attending physical, behavioral, and speech therapy. In fact, Anthony's diagnosis marked the beginning of an upward trajectory in his and Andrea's life as the pair dove headfirst and heart first into participating in ASD research at CHOP.

Growing Through Research

Anthony and Andrea's first study involved a blood draw and questionnaires for genetics research in 2007. While she can't recall the specifics of how she heard about the opportunity, Andrea knew participation would have a multitude of benefits. She would gain valuable knowledge about ASD including the most current research on treatments and progression. Anthony would gain independence, experience, and empowerment. And generations of children would benefit from the scientific insights that their data provided. For example, genetic studies have enabled researchers to develop biomarkers predicting which children have ASD, which might develop the disorder, and who will respond well to different interventions.

Anthony in CHOP’s Main Campus Cafeteria. (Image Credit: Andrea Solari)

By the time Anthony turned 4, he was verbal. He had practiced Applied Behavioral Analysis (ABA) therapy five days a week for one year, attended a preschool program for children with ASD, and eventually transitioned into a regular school. He had built a working vocabulary to communicate and no longer came home with bruises from banging his head against surfaces.

Around the same time, Anthony also became enamored with maps. Andrea placed a map in his room illustrating the directions from their house to the Wood Center. She also played a DVD, provided by CHOP, that outlined what families of children with ASD could expect when participating in research, from walking to the Wood Center to entering an MRI scanner.

"He would trace the map with his finger," Andrea said. "And he watched the video over, and over again, and we would talk about it. He would really kind of prepare himself almost every day." 

As he grew older, Anthony participated in even more research with varying aims and activities. These involved computer games, sleep tracking, body measurements, IQ tests, magnetic resonance (MRI) imaging, electroencephalograms (EEG), magnetoencephalography (MEG), as well as research on vocal biomarkers, behavioral biomarkers for anxiety, social-motor functioning and more.

At 7 years old, Anthony began to receive small amounts of monetary compensation for a few studies and excited by this route toward independence, Andrea helped him open his own bank account.

"I taught him how to do a checking and savings account and how to write checks," Andrea said. "He would find a penny on the ground, write out a deposit slip, and walk to the bank himself. By the time he was 10, everyone knew him there because he would be the kid that deposited one penny into his savings account."

Anthony participates in an electroencephalogram test. (Image Credit: Andrea Solari)

Among more than a dozen studies, Anthony remembers one particular study well: a project led by Julia Parish-Morris, PhD, and Joseph McCleery, PhD examining how virtual reality can foster safer interactions between police and teenagers or young adults with ASD.

The study was later featured on 6ABC, and had individuals run through various scenarios with both virtual and actual Philadelphia Police officers. Studies like these seek to use gaming as an easy-to-access, affordable, and effective intervention for ASD. But they also teach participants how to develop awareness, agency, and empowerment when preparing to navigate the adult world.

"I am a firm believer in doing the research. It's made him feel valued," Andrea said. "It's made him feel important. And it's made him feel like his autism is important and not just something that makes him different. There were a few times when he was younger that he was embarrassed of his autism. And I always explained to him very early on why he does the things that he does, and why."

The Ripple Effect of Research Participation

The Solari's involvement in ASD research has had a profound ripple effect: Now a junior at Saint Joseph's University (SJU), Anthony majors in Autism Behavioral Studies, minors in Psychology, and works at SJU's Kinney Center for Autism Support. Recently, he was tasked with helping incoming freshmen with ASD get comfortable with the center's Autism Support Promoting Inclusive and Responsive Education (ASPIRE) Program. As a pitcher on his club baseball team, he shows autistic teenagers and adolescents that they, too, can get involved in different groups.

For the last few years, Anthony also worked as a counselor at Dragonfly Forest Summer Camp, a sleepaway program from the Camp Speers YMCA in partnership with CHOP for children with autism and other conditions such as 22q, sickle cell disease, hemophilia, and asthma.

Meanwhile, in May of 2023, Andrea delivered a presentation at the 10^th annual Clinical Research Coordinator (CRC) RE@CH Awards about the impact research staff have had on her family.

"Whenever I ask him about joining another study, he does it willingly," Andrea said during her speech. "The impact study coordinators have had on my son is amazing. He shares everything he learns with me, and being away from me builds his social skills. It makes him feel important to help conduct this research."

When asked why the mother-and-son pair continue to stay connected with the research community at CHOP, Andrea says participation has equally benefited Anthony and the community at large.

Anthony at Dragonfly Forest Summer Camp. (Image Credit: Andrea Solari)

"I think both of our 'whys' are the same," Solari said. "We do it because it's important for him. And I've always told him that by him participating [in research], somebody else will be able to get better treatment or a better diagnosis.

"So, we do research so that other children can be fortunate and thrive like Anthony thrived, and progress."

Are you interested in participating in CHOP research studies? Learn more with our Recruitment Enhancement Core (REC) or check out a list of studies through our Research Discovery Finder.