Families of children with autism spectrum disorder (ASD) face complex and often overwhelming challenges—understanding how the condition impacts their child, accessing support services, and coping with the financial strain of therapies and interventions that health insurance may not cover. Birmingham business owner and CEO Sheila Benson and her family experienced many of these struggles when her grandson, now 16, was diagnosed with ASD at age 2. “It was difficult for my son’s family to access the appropriate resources and therapies that my grandson, who is nonverbal, needed after his ASD diagnosis,” she explained. “Waiting lists sometimes caused a two-year gap in obtaining a therapy that he needed, which caused stress and frustration for our family. Also, insurance didn’t pay for his therapies at that time.” Benson said several friends and their families have also struggled to cope with the challenges of a child’s ASD diagnosis. “Seeing these difficulties within my own family, as well as those experienced by others, made me more aware of what individuals with ASD and their families need,” she said.
ASD is a lifelong neurological and developmental disorder that affects how people interact with others, communicate, learn, and behave. Statistics from the Centers for Disease Control and Prevention show the prevalence of ASD is significant and increasing, with one in 36 children diagnosed in 2023 compared to one in 44 only two years earlier.
Benson explained that her desire to support individuals in the ASD community was the catalyst for establishing a philanthropic partnership with the UAB Civitan-Sparks Clinics, which provide evaluation and intervention services for those with physical, developmental, learning, and behavioral challenges. The clinics, including the UAB Autism Spectrum Disorders Clinic, are part of the Civitan International Research Center (CIRC), an interdisciplinary hub focused on service, education, and research for neurodevelopmental disorders. “Through my partnership with UAB, I’m focused on helping other families of children with ASD connect with the resources they need and advancing research that can help those with ASD have the best possible future,” said Benson. “If we can get people with ASD diagnosed early and connect them to resources and effective therapies, they can live more functional lives and reach their full potential.”
Laura McGuinn, M.D., clinical director of the UAB Civitan-Sparks Clinics and director of the UAB Division of Developmental and Behavioral Pediatrics, said research shows that early intervention for children with ASD leads to greater improvements in communication, behavior, and mental health when compared to children who begin interventions later. “Ms. Benson’s generous partnership has been invaluable in helping us to enhance our care coordination support infrastructure to connect newly diagnosed patients to resources and interventions more quickly,” she explained. “Bridging this gap from diagnosis to intervention helps give children with ASD the best chance to achieve optimal outcomes and reduces the stress and uncertainty many families feel after a diagnosis.”
As part of the clinic’s care coordination, social workers conduct regular check-in calls with families after diagnosis to ensure connection to therapies and referrals to community-based resources. “Ms. Benson’s support has allowed us to add social work personnel, who have made more than 3,000 check-in calls with newly diagnosed families during the past year,” said McGuinn, holder of the Thomas H. Lowder Endowed Chair in Developmental and Behavioral Pediatrics. “Much of our previous follow-up was done by a physician or psychologist, which displaced the time we could spend diagnosing patients. We now can complete more diagnostic evaluations because of the additional social work personnel.”
The additional personnel also has enabled the clinic to collect vital data that identify outcomes related to the needs addressed during check-in calls and to document the impact of these efforts for hospital administrators, state policy-making agencies, and other stakeholders. “These data will help to define and shape a standard of care for the future,” said McGuinn. Benson’s gift also has funded the development of an upcoming interactive website that will streamline statewide resources into an accessible, time-saving source for families and referring providers. “Many of these resources are fragmented, so developing a user-friendly source of this information can improve access to care and lower stress for families,” McGuinn explained.
Benson’s philanthropic partnership also has been instrumental in advancing critical research focused on identifying effective interventions to improve the lives of people with ASD and their families. “Philanthropic partners like Ms. Benson are essential to driving new ideas and bold experimentation in ASD and other neurodevelopmental disorders,” explained Craig Powell, M.D., Ph.D., director of the Civitan International Research Center and the Virginia B. Spencer Endowed Chair in the UAB Department of Neurobiology. Powell said more than 100 scientists in the UAB Civitan International Research Center for Neurodevelopmental Disorders are engaged in research to develop evidence-driven therapies for ASD-related symptoms, including sleep challenges, with a goal to study all symptom domains, such as anxiety and obsessive-compulsive disorder (OCD)-like behaviors. “Early-stage therapeutic research often is not funded by traditional mechanisms such as the National Institutes of Health,” Powell said. “Philanthropic support allows our scientists the freedom to explore novel ideas and approaches, generating data that can be leveraged to obtain larger grant funds to bring these ideas across the finish line—impacting patients and their families for decades to come.”
“The work Dr. McGuinn, Dr. Powell, and other UAB clinicians and researchers are doing is priceless,” said Benson. “They give so much of themselves and understand the challenges for people with ASD and their families.” Benson’s grandson, now in high school, recently attended the prom for special needs students and is learning life skills. “We’re grateful for his progress, understanding that ASD is a lifelong condition with continued challenges,” she said. “I want people with ASD and their families to know they’re not walking this road alone—there are resources available with compassionate experts to provide support and help as they navigate this unfamiliar journey.”
-Yolanda Heiberger