UVA’s Mandy Rispoli, fourth standing from the left, and colleagues worked with Kenyans to develop programs to help children with autism and their parents to better support them. Some aspects of the program made it into a similar one here in the U.S. (Contributed photo)
When Univerity of Virginia professor Mandy Rispoli and her Kenyan partners organized a workshop for families of children with autism in the growing city of Eldoret, they carved out two hours for the event.
It was not nearly enough.
“We had 20 families show up and they stayed for 7½ hours,” said Rispoli, Quantitative Foundation Bicentennial Professor at the UVA School of Education and Human Development. “And they did not want to leave. It was amazing.”
Rispoli is a faculty affiliate with UVA’s Supporting Transformative Autism Research initiative, or STAR. She is co-leading two projects aimed at supporting children with autism and their families, one in Kenya and the other in the United States. The projects are part of the University of Virginia’s work with AMPATH, a longstanding collaboration between North American-based colleges and universities and health care professionals in Kenya.
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.
UVA professor Mandy Rispoli and colleagues hosted listening sessions with Kenyans followed by training for pediatricians and psychiatry medical residents on autism diagnosis and referral for care. (Contributed photo)
“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.
Dr. Saina Chelagat, a psychiatrist at Kenya’s Moi University and Moi Teaching and Referral Hospital, co-led training sessions for schools serving children with autism spectrum disorder. (Contributed photo)
With the information they gain, paired with what they gleaned during the June visit, they will start to build solutions with their Kenyan partners through teacher and caregiver trainings, young ambassador training, and developing new, culturally sensitive special education curricula.
From the U.S. to Kenya, and Back Again
The second project Rispoli is co-leading is developing hands-on training for caregivers of children with autism. The team developed and piloted a 10-week program in Kenya to support parents and other caregivers.
The program did not stay in Kenya.
“Reciprocal innovation is this idea that we start with something, maybe in North America,” Rispoli explained. “We adapt it to make sure that it’s appropriate and effective in another context like Kenya. Then, after we’ve run the program there, we take what that new model looks like and we bring it back to United States, taking elements that we’ve learned there that might also be helpful here.
“The idea is that we end up with solutions we would not have had if we did not have that cross-cultural piece.”
The team took a program originally designed by Rispoli in the U.S. and piloted it in Kenya in the fall of 2022. It is currently analyzing the results from Kenya and making changes to the program’s U.S. implementation.
“All of our team’s parent training in the U.S. was done one-on-one, in an individualized, telehealth format,” Rispoli said. “In Kenya, it is all about community. So, the idea of an individual session just makes no sense.”
The team took this community-focused, group training model and adjusted the program when they ran it in Indiana in the spring of 2023 instead of conducting sessions one-on-one.
“Anecdotally – we’re still analyzing the data – having another mom or dad to talk to, I think, was really powerful for these families,” Rispoli said.
Other changes to the program came from what the team learned in Kenya.
In the United States, interventions for children are often measured by student outcomes. The team’s partners in Kenya wanted a greater focus on the caregiver, including support, mental health and well-being. So, the team structured sessions in Kenya that included coping strategies and allowed for time to kind of check in emotionally with one another in the group format.
“We took that and pulled it into the North America program as well. And that was really powerful for families, I think,” Rispoli said.
This fall, the team will run the revised training program again in the U.S., this time in Virginia. And they will continue to include the lessons they learned from their colleagues and partners in Kenya.
