2025 Pan African Congress on Autism: A Milestone for Autism and Epilepsy Awareness in Africa

The 2025 Pan African Congress on Autism, held in Nairobi, Kenya, was a transformative gathering that united advocates, caregivers, clinicians, and families from across the continent. This event not only highlighted the challenges faced by individuals with autism but also brought epilepsy into the conversation, recognizing the frequent intersection of these two conditions. The Congress aimed to create a comprehensive roadmap for better care, education, and support systems for people living with autism and epilepsy in Africa.

Key Highlights and Contributions

Jacqueline Mathaga

Founder, Arthur’s Dream Autism Trust

Jacqueline Mathaga, a founding trustee of the Pan African Congress on Autism and the Arthur’s Dream Autism Trust (ADAT), shared her deeply personal journey as a mother of a 19-year-old non-speaking autistic son. She emphasized the significant challenges of navigating Kenya's education system, particularly the lack of specialized programs and inadequate support for autistic individuals transitioning from childhood to adulthood. Jacqueline’s call to action focused on the urgent need for vocational schools, improved teacher training, and better transition policies for neurodivergent learners. Her advocacy work through ADAT empowers parents in Kenya to fight for access to justice, healthcare, and education for their children.

Frederick Bucha

Epilepsy Activist and Caregiver

Frederick Bucha, a passionate epilepsy advocate, discussed the critical role caregivers play in managing epilepsy, especially when combined with autism. His campaign, "Angaza Kifafa," aims to increase public awareness of epilepsy and equip healthcare workers and community leaders with the skills to support affected individuals. Frederick emphasized the need for more specialized care and the shortage of trained professionals, particularly in the field of epileptology. He also provided practical advice for caregivers, including the importance of regular medical follow-ups and adjusting medication dosages as children grow. His insights underscored the necessity of adhering to medical advice and the dynamic nature of managing epilepsy.

Tolu Olaniyan

CEO, Pretola Global Health & Consulting

Tolu Olaniyan addressed the intersection of autism and epilepsy, underlining the importance of integrated care models. Through her organization, Pretola Global Health & Consulting, Tolu works to empower families with resources and support systems, particularly in rural and underserved areas. She advocated for stronger international collaborations to improve care standards and address the gaps in African healthcare systems. Tolu's insights highlighted the need for a holistic approach that considers the unique challenges faced by individuals with both autism and epilepsy, emphasizing the importance of community-based solutions and international partnerships.

Fred Kiserem

Founder, Kiserem Epilepsy Foundation

Fred Kiserem provided practical advice for caregivers of epilepsy patients, including first aid tips during seizures. He also tackled common misconceptions about epilepsy, such as the stigma that it is contagious or caused by spiritual forces. His work focuses on debunking myths and promoting education about epilepsy, especially in culturally diverse communities. Fred's foundation is dedicated to raising awareness and providing support for individuals with epilepsy, aligning with the broader goals of the Congress. His contributions highlighted the importance of community engagement and education in reducing the stigma associated with epilepsy.

Challenges and Calls to Action

Educational Barriers

Jacqueline Mathaga’s presentation shed light on the systemic failures that leave many autistic children without access to specialized education. There’s a pressing need for inclusive schools, vocational programs, and comprehensive teacher training to equip educators to support neurodivergent students effectively. The lack of transition services for teenagers and the absence of spaces for young adults exiting high school were highlighted as significant gaps in the current education system. Jacqueline's personal experiences and advocacy efforts underscored the urgent need for policy changes and increased resources to support autistic individuals throughout their educational journey.

The Overlap of Autism and Epilepsy

With many individuals experiencing both conditions, the Congress emphasized the need for integrated care strategies. The lack of specialized clinics and trained professionals remains a significant challenge, particularly in countries with fewer resources. Tolu Olaniyan's call for international collaborations underscored the importance of sharing expertise and resources to bridge these gaps. The Congress highlighted the necessity of training healthcare providers on the intersection of autism and epilepsy to improve patient outcomes and provide comprehensive care.

Caregiver Challenges

Both Jacqueline and Frederick shared personal stories of the emotional and logistical challenges caregivers face. There’s a clear demand for support systems that can assist caregivers, from mental health resources to practical training in managing both autism and epilepsy. The Congress highlighted the need for regular medical follow-ups and the importance of adhering to medical advice to ensure the well-being of individuals with these conditions. Advocacy for better healthcare policies and access to resources is essential to support caregivers in their roles.

Public Awareness and Stigma

Fred Kiserem’s remarks about the stigma surrounding epilepsy were echoed throughout the Congress. Many participants shared personal stories of discrimination, underscoring the importance of public education campaigns that can change societal perceptions and reduce stigma. The Congress emphasized the need for community engagement and awareness initiatives to promote understanding and acceptance. These efforts are crucial in creating a more supportive environment for individuals with autism and epilepsy, fostering inclusivity and reducing social barriers.

Recommendations for Progress

Education and Vocational Training

Implement specialized schools and vocational programs designed for autistic individuals, with dedicated resources to help them transition into adulthood. Teacher training must also be enhanced to cater to the unique needs of neurodivergent students. Advocacy efforts should focus on policy changes that support inclusive education and better transition services. Governments and educational institutions must collaborate to create comprehensive programs that address the specific challenges faced by autistic individuals.

Healthcare Access

There is an urgent need to increase the number of specialists, particularly epileptologists, and to make care more accessible in underserved regions. Training healthcare providers on the intersection of autism and epilepsy is also essential to improving patient outcomes. Collaborations between international organizations and local healthcare systems can help address the shortage of trained professionals. Governments should invest in healthcare infrastructure and training programs to ensure that individuals with autism and epilepsy receive the specialized care they need.

Public Awareness Campaigns

Governments, NGOs, and healthcare providers must collaborate on large-scale awareness campaigns to combat the misconceptions surrounding autism and epilepsy. More education is needed to foster understanding and reduce societal stigma. Community engagement initiatives, such as Fred Kiserem's work, can play a crucial role in promoting awareness and debunking myths. These campaigns should be tailored to different cultural contexts to ensure their effectiveness in diverse communities across Africa.

Caregiver Support

Establishment of caregiver support networks, including mental health services and practical training programs, can help alleviate the burden on families and improve the quality of care provided to those with autism and epilepsy. Advocacy for better healthcare policies and access to resources is essential to support caregivers in their roles. Governments and NGOs should work together to create comprehensive support systems that address the unique challenges faced by caregivers.

A Shared Commitment to Change

The 2025 Pan African Congress on Autism provided a platform for stakeholders to engage in meaningful dialogue and develop solutions for the challenges faced by individuals with autism and epilepsy across Africa. The recommendations and insights shared are a step forward in creating a more inclusive, supportive, and informed Africa for those living with these conditions.