In resource-constrained settings such as Kenya,autistic children face significant challenges due to stigma, limited resources, and a lack of awareness about the diagnosis. Caregivers often feel overwhelmed and isolated, which can lead to negative outcomes for both the child and the caregiver. Our project aims to improve access to education, health services, and support for autistic children in Kenya through the development of a peer-delivered caregiver upskilling program.
In June of 2024, I visited Eldoret , Kenya and hosted listening sessions with caregivers to better understand the specific needs of their community. These sessions highlighted the educational gaps among caregivers and helped shape the development of Takia. Takia is an evidence-based and culturally relevant educational program designed to address essential topics such as understanding autism, caregiver well-being, behavior management, and accessing local support services.
In February 2025, I will return to train 10 Kenyan caregivers to become Autism Information Navigators (AINs). AINs will receive comprehensive training on the Takia program and learn how to effectively deliver the modules. After the training, AINs will share the educational content with other caregivers and provide peer support through WhatsApp and in-person sessions. They will also engage with the broader community to raise awareness and reduce stigma.
Post-program, all caregivers will retain ongoing access to the Takia modules via a virtual or physical handbook, ensuring long-term access to valuable resources and support.
The target population for this project is Kenyan caregivers of autistic children. In Kenya, families of autistic children face several unique barriers to care. One of the most significant challenges is the lack of neurodevelopmental resources and support within the community. This scarcity means families often struggle to access essential services, such as diagnostic assessments, therapy, and support groups.
Additionally, there is a widespread lack of awareness and understanding about autism, which leads to misconceptions, stigma, and discrimination against autistic children and their families. This stigma can result in isolation, loss of employment, and even family separation, further discouraging caregivers from seeking the help and support they need.
By training caregivers to become AINs, this project empowers individuals within the community who share trusted, lived experiences of parenting autistic children. These community-based AINs will create an accessible, sustainable, and culturally relevant peer support system that helps families overcome isolation and connects them with evidence-informed resources and services.
This month, I traveled to Kenya to train caregivers as Autism Information Navigators (AIN) through Takia. I led the development of Takia and the AIN program with support from an American Academy of Pediatrics International Access to Children’s Health Grant and the Dox Foundations travel grant. Takia is a culturally grounded autism education and peer support program designed to empower caregivers of autistic children .Iteratively co-designed by our US-Kenya research team using a community participatory approach, Takia includes nine educational modules based on our team’s evidence-based caregiver well-being and behavioral intervention program developed for the western Kenya setting. 10 Caregivers who completed this intervention were trained as AINs and completed autism knowledge assessments. On February 7, we celebrated a major milestone—the graduation of our first cohort of 10 AINs. These dedicated caregivers are now providing peer support, educating other caregivers, and raising autism awareness in their communities. Seeing the passion and enthusiasm to serve as AINs was inspiring, and I am incredibly proud of what they will accomplished together. By the end of training many AINs already had community speaking engagements scheduled and identified other caregivers to autistic children ready to learn more.
This visit was also a continuation of the co-development process. Caregivers and community leaders shared outstanding needs within their communities, which helped shape our next project—evaluating safety concerns for children with disabilities in Kenya and identifying feasible, locally available solutions.
Beyond the AIN training, I had the opportunity to educate more than 50 individuals—including caregivers, medical students, teachers, and other medical professionals—on neurodevelopmental disabilities, tips to support autistic children or our teams work in Kenya. Many of these teachings took place with my amazing mentor, Dr. Rebecca McNally Keehn and the rest of our research team. I was blown away by the professionals, specifically the teachers, who sacrificed their personal time to attend caregiver sessions in order to learn more about supporting their autistic students. I was also touched by the communities willingness to help one another and offer advice to each other from their lived experiences.
During the trip, we visited Eldoret Special School to support one of our research team members, Dr. Mandy Rispoli, who is leading the development of a teacher training program for special education in Kenya. While there, we learned about their vocational program and had the privilege of purchasing jewelry and purses made by older students. Sharing in song and dance with them was a beautiful opportunity to share joy with the community.
This trip was deeply meaningful, showing the power of collaboration, community and the importance of listening to those we aim to support. I am grateful for the opportunity to continue this work and look forward to the next steps in making a lasting impact.
