Fathers of children with neurodiversity face complex and often hidden struggles, from the emotional and financial strains of care to the social challenges of stigma and misunderstanding. In many communities, these fathers lack support systems, exacerbating feelings of isolation, anxiety, and helplessness, which can hinder their ability to care for both themselves and their families.

Recognising this need, the University of Johannesburg (UJ) hosted a unique Fathers of Children with Neurodiversity (FCN) Retreat from 25-27 October 2024. This gathering on UJ Island served as a sanctuary for fathers to come together, share their experiences, and strengthen their resolve to support their neurodivergent children and families.

Addressing isolation and building resilience together

Organised by UJ’s Centre for Neurodiversity, the retreat provided a safe, nurturing space for fathers from diverse backgrounds to connect and confront the unique challenges of raising neurodivergent children. The event’s opening session featured Prof. MM Sefotho’s presentation on Internal Cohesion Psychotherapy, where he encouraged fathers to cultivate resilience through introspection and community. This interactive session allowed participants to openly voice their experiences and frustrations, an opportunity many had not previously encountered.

The theme of shared humanity was underscored by a quote from Nelson Mandela: “The greatest glory in living lies not in never falling, but in rising every time we fall,” a reminder of the courage it takes to navigate the parenting journey alongside neurodivergent children.

A path to self-care and unity

The second day offered practical workshops on managing stress, mental health, and well-being, led by guest speakers, including Mr. Setagwa Mahlo from the University of Pretoria, Dr. Neo Pule from UJ, and Dr. Aaron Majuta from the University of Botswana. These sessions created a supportive environment for fathers to discuss the psychological impacts of their experiences, reinforced by insights into self-care and positive self-talk as essential tools for resilience. Just as Liverpool FC’s motto, “You’ll Never Walk Alone,” resonates with the power of community, the retreat became a testament to the strength and unity found in shared experiences. The fathers’ sense of camaraderie grew, with many expressing relief in discovering they were not alone in their journey.

By connecting with each other, these fathers found emotional empowerment, realising they could lean on one another to advocate more effectively for their children’s needs. The primary purpose of this gathering was a battle with oneself, confronting inner frustrations, and acknowledging the weight of supporting neurodivergent children. In this setting, their “weapon” was simply giving voice to their experiences—a powerful act that transformed isolation into shared understanding and hope. Prof. Sefotho highlighted this as the beginning of a profound journey toward a more inclusive neurodiverse community, reinforced by the African proverb, “When you pray, move your feet,” emphasising the need for both reflection and action.

Defining a future of advocacy and community

On the final day, the retreat focused on defining the FCN Tribe’s collective identity, vision, and goals. Fathers worked together to outline a mission that would support not only each other but also neurodivergent children across South Africa. They committed to raising visibility and awareness for the neurodiverse community, advocating for better understanding and acceptance. Prof. Sefotho introduced the Project ECHO® model, which facilitates collaborative learning and ongoing knowledge-sharing, allowing the group to become a dynamic support network. Inspired by Aristotle’s words, “We are what we repeatedly do. Excellence, then, is not an act, but a habit,” the FCN Tribe adopted a philosophy of continuous learning and empowerment, driven by Ubuntu, the African ethos of shared humanity.

The fathers left the retreat with a renewed sense of purpose, determined to create a supportive community that prioritises inclusion and equity for their children. The experience reinforced the notion that their struggles, while personal, are part of a larger movement towards acceptance and advocacy. By sharing their stories and insights, these fathers strengthened each other, pledging to support one another and to advocate for neurodiversity in their communities. Prof. Sefotho proposed documenting their journeys as part of a collective body of work, aiming to empower the fathers and shift societal perspectives on their roles.

About the FCN Tribe

The FCN Tribe was conceptualised on 27 July 2024, during a book launch at the University of Johannesburg, where Prof. Sefotho invited fathers of neurodivergent children to form a supportive community. Since then, the FCN Tribe has grown into a structure that seeks to empower and advocate for fathers, neurodivergent children, and their families through psychosocial programmes and subsistence initiatives like hephapreneurship. Embracing the values of Ubuntu, the FCN Tribe champions diversity, equity, and inclusion, with a vision of a world where people with neurodiversity are respected, integrated, and heard.

FCN Motto: Re-imagining the future for the neurodiverse community
FCN Vision: To create a world where neurodiverse people are integrated, seen, and heard
FCN Mission: To advocate, support, and empower the neurodiverse community
FCN Philosophy: Ubuntu – embracing shared humanity
FCN Values: Diversity, Equity, Inclusion

For more information or to join the FCN Tribe, please contact Prof. MM Sefotho at neuroadmin@uj.ac.za.