Community-Driven Autism Research: Insights from Kenya


Community-Driven Autism Research: Insights from Kenya

Q&A with Mandy Rispoli
Mandy Rispoli Headshot

andy Rispoli leads projects in western Kenya to enhance care access for children with Autism Spectrum Disorder (ASD). Through a community-based approach, Rispoli collaborates with families and stakeholders to co-create solutions tailored to local needs. Her experiences in Kenya also inform her work in Charlottesville, highlighting shared challenges encountered by caregivers and educators across different cultural contexts. Alongside her interdisciplinary team and students, Rispoli actively adapts interventions that facilitate a two-way exchange of knowledge and practices between the US and Kenya.


Tell us about your research.

Rispoli: I'm involved in several projects aimed at improving access to care for children with Autism Spectrum Disorder (ASD) and their families in western Kenya. Our interdisciplinary team includes Kenyan and North American researchers and clinicians from the fields of medicine, special education, psychology, and social work. We recently completed a pilot study to develop and evaluate a caregiver-training program called Pepea. Pepea was named by our Kenyan colleagues and in Swahili means to flutter or to float up upon a breeze. Our partners believed this name would represent the hope families have for their children. Our preliminary findings show that the ten-week program leads to improvement in caregiver well-being and decreases in child challenging behavior.

We're also conducting a qualitative study funded by UVA’s Center for Global Inquiry + Innovation to understand the experiences of families, teachers, and diagnostic professionals caring for and educating children with autism in Eldoret, Kenya. With support from the Spencer Foundation, we plan to expand this work to develop a thorough understanding education for children with autism and other developmental disabilities in Kenya. This portfolio of work is affiliated with UVA’s pan-university Supporting Transformative Autism Research (STAR) initiative, which aims to improve the lives of individuals with autism through interdisciplinary research, community engagement, and innovative intervention and training models, and UVA’s membership in the AMPATH consortium.

I am consistently amazed and inspired by families of children with disabilities both in the US and abroad. Professionals can bring expertise in a variety of domains, but caregivers are the experts on their children.

One of your priorities is having a community-based participatory action research approach. What does that mean and how does it play out in your work?

Rispoli: Having a community-based participatory action research approach means that we co-create research questions and solutions with community members directly affected by the issues or phenomena we're studying. This practice, although intuitive, has not been traditionally common but has seen growing attention and adoption in recent years. This approach ensures that our work is driven by the community's priorities, strengths, and needs. For example, the content, structure, and delivery of the Pepea program were co-developed based on input from caregivers, parents, and service providers in Kenya who expressed a need for building community support and accessing strategies to improve their child's social-communication skills and decrease challenging behaviors. We are now gathering insights from participating Kenyan families to enhance and refine the program for future participants.

Our exploration of educational services for children with autism and other disabilities also originated from conversations with Kenyan families and educators, who highlighted challenges in assessments, school admission, and quality of education and care in schools. In engaging with Kenyan special education teachers, we are hearing their perspectives on the aims of education, strengths of the education system for children with disabilities, and priority areas for improvement. These findings will drive our future collaborations and efforts.

You recently returned from a trip to Kenya, tell us about your accomplishments there.

Rispoli: In February 2024, I returned to Kenya for two weeks. During that time our team basically ran nonstop! Leading up to that visit we worked with our Kenyan partners to culturally adapt an autism diagnostic instrument from the US to Kenya. During our visit, our Kenyan colleagues conducted twelve autism assessments, and we conducted nine training sessions, including ones for students at the Kenya Institute for Special Education, special education professionals and administrators, medical professionals involved in diagnosing autism, and families. Additionally, we had the privilege of visiting four schools catering to students with disabilities and conducted one treatment consultation for a mother and her child. Overall, our efforts reached 197 individuals through assessments, training sessions, and consultations.

Professor Mandy Rispoli with Kenyan Family Stakeholders in February 2024
Rispoli with Kenyan Family Stakeholders

How does your work in Kenya impact your efforts in Charlottesville? Do you encounter similar issues, or do the different cultural contexts bring up unique challenges?

Rispoli: I am consistently amazed and inspired by families of children with disabilities both in the US and abroad. Professionals can bring expertise in a variety of domains, but caregivers are the experts on their children. The need to support and celebrate caregivers is universal. The same goes for teachers. Lifting teachers up, valuing their expertise and experiences, and partnering with them to continue to learn and grow together is the only way to improve educational outcomes for children, whether in Charlottesville, Virginia or Eldoret, Kenya.

To that end, one of the foundational principles of AMPATH is a focus on reciprocal innovation, challenging the idea that high-income countries are the holders of knowledge, expertise and innovation. Instead, the focus is on bidirectional flow of knowledge and expertise that then leads to innovation. Currently, with funding from the Indiana Clinical and Translational Sciences Institute, we are developing and piloting a caregiver-training program for US families informed by the program in Kenya.

Our original US caregiver training program focused on communication intervention strategies families could incorporate into home routines, delivered via one-on-one facilitator and caregiver telehealth sessions. In Kenya, we adapted it to build upon Kenyan cultural values and strengths, integrating storytelling, community-building among caregivers, and caregiver coping strategies. We then brought these elements back to the US to reciprocally innovate a new and improved US caregiver training program, called CAST (Caregiver Autism Support and Training), which emphasizes group sessions over one-on-one training, to foster community among caregivers, and increases the focus on caregiver well-being and coping strategies. This reciprocal innovation approach has allowed both sites (Kenya and the US) to build collaborative solutions neither would have developed without the other, leading to promising results that suggest potential positive impacts on caregiver well-being and child social-communication and behavioral outcomes in both settings.