When a parent learns that their child has been diagnosed with a disability or disorder, their protective instincts kick in. They reprioritize the role they play for their child and do all that they can to learn about this new reality. Juan E. Dipini, a U.S. Navy Veteran and cancer survivor, became such a parent when his son, Guarionex, was diagnosed with autism spectrum disorder at the age of 3.
That initial diagnosis was the first time Juan had heard of autism. Juan’s immediate reaction was a flood of questions: “What is autism? Will he be okay? How will this affect him? Will he be ‘normal’?” Guarionex also suffered from epilepsy, and Juan was daunted by his lack of experience and knowledge in the two subjects, but he relentlessly researched the meaning of these diagnoses to better understand the challenges ahead and become the best father he could for Guarionex. The complexity of autism and epilepsy led Juan to seek medical help at hospitals specializing in treating children with complex conditions. Juan engaged Guarionex in various early intervention strategies and has watched his son, once a nonverbal child with learning disabilities, flourish into an 11-year-old boy whose verbal ability is now above average ranking.
Juan admitted that the journey was difficult; he was challenged to understand and meet his son’s needs because Guarionex was unable to communicate to his father. With his son feeling isolated and ostracized, Juan searched for family support and resources as well as medical interventions. Through his search, he became involved in the organization Autism Speaks. Motivated by his own struggles, he made it his mission to make resources more accessible to and advocate for other families living with autism. Juan applied and was chosen to be an Autism Speaks Advocacy Ambassador in 2018, giving him the opportunity to lobby Congress for research and service funds for those living along the autism spectrum. In his words, “As a parent, it is disheartening to see how many families struggle daily when they lack resources, [and experience a] scarcity of medical services, support, or information. Through the Ambassador program, our efforts have provided a more effective way to access said needs.”
In 2021, Juan was nominated by the Autism Speaks Ambassador program to become a consumer peer reviewer for the Congressionally Directed Medical Research Programs Autism Research Program (ARP). Juan said, “As a parent, I find the ARP valuable because it not only involves parents and their input, but the fusion of the scientific community and ASD families.” As a parent advocate, he brought to discussions insights regarding patient diet, consumer experience, and access to service; as a minority representative, he provided insights regarding the variability of experience and access to care for minorities and those living in underserved communities compared to the majority population, making his voice invaluable. Additionally, the ARP review process involved him in the next steps following his lobbying efforts: from lobbying for funds to funding research to learning how research is conducted and understanding how that research yields treatment decision-making points and solutions that will ultimately provide services to patients. Seeing the full cycle and effect of advocacy efforts take place firsthand was rewarding to Juan and inspired him to continue his involvement in advocating for change for the autism community. Juan says, “Parents are the best advocates for their children. Our hands-on involvement and experience is a key component to the ASD community.”
In addition to his involvement with the Autism Speaks Ambassador program and the ARP, Juan is also a committee member on the Pennsylvania Development Disabilities Council, which advocates for individuals challenged by various disabilities by funding a number of organizations. He continues to passionately serve his local community of Lehigh Valley in Pennsylvania, providing advice and participating in various organizations, including Guarionex’s school.
Guarionex today is a thriving 11-year-old who can speak, read, and write in two languages and actively participates in a regular fifth-grade classroom, interacting with peers. Much like his father, Guarionex is also involved in his community—his school. He is a "Mustang Ambassador" for his school, welcoming new students into their new classroom environment.
Last updated Sunday, December 31, 1600