During Rispoli’s recent Kenya visit, she saw firsthand the need for additional supports for children with autism in education and health care, as well as how critical her Kenyan and local partners are to this work. In that initial workshop, she could also see the universality of parents who love their children and want the best for them.
“They want the same outcomes for their kids that any parent wants for any kid: to be happy, to be loved, and to be a good citizen,” she said.
Autism and School
Rispoli and Kenyan colleagues planned the workshop after hearing some parents express concerns about their children’s experiences in school, and others who were wrestling with the inability to even get their children enrolled in school.
“We realized based on what they were telling us that we needed to learn more about the educational system and special education, specifically, in Kenya,” Rispoli said.
She and her team toured two schools that serve children with autism and other developmental disabilities. They met with teachers to learn about their work and challenges they face. The team also spent time with pediatricians and medical students in psychiatry – the physicians who are most likely to diagnose autism.
“The lack of consistency in terms of understanding and messaging, even within the hospital, was eye-opening,” Rispoli said. “So, families were walking away not necessarily getting accurate information about their child or about autism. And not for any malintent, just because people just don’t have access to accurate information, and so they share what they know.”
The lack of accurate information also contributes to the challenges families in Kenya face that are quite different from those in North America. Those challenges include stigma around disability and beliefs about where disability comes from. One detail Rispoli and her team clarified, for example, is that autism is not contagious.
For the Kenyan project leaders and Rispoli, the more they hear from these families and service providers and understand their challenges, the more they can serve. And they are optimistic about the leadership the families, educators and physicians – who began calling themselves “autism ambassadors” – can offer.
“They wanted to help spread the word,” Rispoli said. “In fact, one teacher said, ‘We want to spread the gospel of autism.’ I think people are really committed to getting rid of some of this misinformation and making sure that their kids have access to high-quality education.”
For the next few months, the research team will conduct focus groups and interviews with schools, families and professionals in Kenya. Funded by the UVA Center for Global Inquiry and Innovation, in partnership with the UVA Center for Global Health, the work will continue through November.