In many parts of Kenya, an autism diagnosis can be challenging to receive because there are so few resources and clinicians equipped to recognize it. But the differences in the child’s development can be clear and socially devastating.  Neighbors whisper that a curse has fallen on the family. Fathers leave. Mothers are blamed. And the child is kept inside, out of sight. Schools refuse to enroll the child due to disability stigma, lack of knowledge of autism, and lack of trained personnel to teach autistic learners. As a result, many of these children simply disappear from public life. This is the reality that brought me to Kenya, and it’s the reality our international team of Kenyan and US researchers and clinicians have spent the last several years working to change.

A gap the world forgot

Autism affects roughly 1 in 100 children around the globe, but 95% of children with neurodevelopmental disabilities, like autism, live in low-and middle-income countries, like Kenya. Yet low-and-middle income countries have received almost none of the research attention or resources poured into autism in wealthier nations. This means that while we may have research-backed practices here in the US, those practices have not been evaluated in Kenya and may not be appropriate for Kenyan culture and contexts. Most Kenyan caregivers and teachers have no training in autism and often have nowhere to turn for guidance.

In collaboration with AMPATH, our team has been actively engaged in understanding and building local capacity to support autistic children and their families. This work is grounded in a concept called reciprocal innovation. Reciprocal innovation is the process by which high- and low- and middle-income countries work together toward a common goal that has mutual benefit and where each party learns from the other. Reciprocal innovation moves away from a one-directional model of global health, where solutions are designed in high income countries and simply exported elsewhere. Instead, it assumes that both low- and middle-income countries and high income countries have knowledge and expertise to teach the other. Together we can build something that neither could have achieved on their own. Our goal in this work is to engage in reciprocal innovation to build a pathway to autism support and intervention services in Kenya and in under-resourced areas here in the United States.

Listening first

The work begins with listening. Alongside Kenyan colleagues, we brought together an advisory board of village elders, teachers, families, and autistic self-advocates, and asked them to help us understand what was really happening on the ground. Their answers shaped everything that followed. We built and tested a new survey with our Kenyan advisors and colleagues to measure what Kenyan teachers and caregivers believe about autism, where their knowledge gaps are, and their views on the value of education for children with autism. Nearly 200 families and educators took part in that first round, and we’re now expanding the work into Nairobi with hundreds more.

What we heard, again and again, was heartbreak layered with hope: parents who loved their children fiercely but had never once been told how to support their child’s development and nurture their potential. Teachers who were passionate about teaching but felt helpless and unprepared to support learners with autism.

Teaching the teachers

Kenya doesn’t require teachers to pursue ongoing training once they’re in the classroom. This means a teacher may go their entire career without ever learning how to support a learner with autism. With our Kenyan partners, we built Wezesha Walimu, Swahili for “Empowering Teachers,” a continuing education program designed for Kenyan special education teachers to do two things at once: support teachers’ own wellbeing, and equip them with practical, evidence-based teaching practices for reaching autistic students. In our pilot with 33 teachers we watched something remarkable happen. Teachers who had once felt helpless in front of an autistic student began using visual supports and systematic teaching strategies with real confidence. They also reported improvements in their own wellbeing. Classroom observations revealed an increase in instruction and in student engagement. It is our hope that this program can be the seed of a county-wide, and eventually country-wide, effort to bring this training to far more classrooms.

What Kenya is teaching us: When we began this work by listening to Kenyan teachers, we assumed they’d ask us for instructional strategies. What they asked for first was help with their own mental health and wellbeing. As a result, Wezesha Walimu was built around teacher wellbeing as a core outcome in addition to instructional practices. That design choice came directly from what Kenyan teachers told us mattered most to them. We’re now working to ask a version of the same question in under-resourced US schools where educator burnout and lack of ongoing autism training are also common.

Giving families a community

But school is only part of the story. Most autistic children in Kenya never make it to a classroom, with many remaining at home, often alone, while their caregivers carry the full weight of raising them with little to no resources. In collaboration with our Kenyan partners, we built Pepea Pamoja, a 10-week program that brings small groups of Kenyan caregivers together to learn strategies from Kenyan facilitators for supporting their child’s communication and behavior, and to build connection and community with other caregivers of autistic children. In our pilot, caregivers reported improvements in their own well-being and their children showed measurable gains in behavior and communication. The connection among these caregivers persists well beyond the conclusion of the program with caregivers hosting their own group meet ups, sharing resources, and checking in on one another. Some of the caregivers who have completed Pepea Pamoja have gone on to support and teach other caregivers.

What Kenya is teaching us: Pepea Pamoja works in part because it combats caregiver isolation, supports caregiver well-being, and provides instruction in leveraging home routines to support child communication and social development. Those same challenges exist in the US for newly diagnosed families who often feel isolated from their communities, often have increased depression and burden, and may be unsure of how to support their child’s development.  Using the reciprocal innovation framework and learning from our Kenyan partners, we developed the Caregivers of Autism Support and Training (CAST) program at the University of Virginia. This fully online program combines content on caregiver wellbeing and routines-based child intervention with weekly online group meetings led by a facilitator with other caregivers. Over 20 families have completed CAST and preliminary results are similar to our Kenya program with caregiver reported improvements their wellbeing and in their child’s communication and behavior.

Building something that lasts

None of this works without infrastructure that lasts longer than a single research project. These programs and collaborations are built within our lasting partnerships with Moi Teaching and Referral Hospital through AMPATH. Recently we’ve established additional partnerships with two of Kenya’s leading institutions: the University of Eldoret, where we helped launch the county’s first master’s program in speech therapy, and the Kenya Institute of Special Education, where we’re building shared research, training, and outreach programs meant to train the next generation of Kenyan special education professionals.

Why this matters

Global health work is often slow and non-linear and change in a community’s deepest beliefs about disability doesn’t happen overnight. But every teacher who learns to recognize strengths and potential in children with autism, every caregiver who finds a community who understands, every child who gets to walk through a school door instead of staying behind a closed one, is a life changed.

Reciprocal innovation means these lessons don’t stay in Kenya. The same systems that too often leave American families, especially in rural or under-resourced communities, without answers, without training, and without support are not so different from what we’ve seen abroad. What we build together in Kenya is already starting to change how we build here too.

This work was supported by:

The Spencer Foundation

The University of Virginia

Indiana Clinical and Translational Sciences Institute

The Keck Foundation

 

Mandy J. Rispoli, PhD
Professor of Education
University of Virginia

2026

 

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The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.