Your child has been diagnosed with autism. In an ideal Africa, what should happen next?
Ntibinyane Ntibinyane | Tuesday December 9, 2025 09:07
In much of Africa, that question hangs in the air unanswered. Parents are left to search the internet late at night, ask neighbours for rumours, or turn to churches and traditional healers, while the formal system stands largely silent. I am not a therapist. I write as a journalist and educator, and this op-ed is not a clinical guide. It is a policy argument: a call for African governments, advocacy organisations and the African Union to rethink what should happen immediately after an autism diagnosis – and to design systems that make those steps possible. What usually happens in richer countries? In countries with stronger autism policies, the moment after diagnosis is still emotional, but it is not a policy vacuum. In the United Kingdom, for example, families are supposed to receive not only a diagnosis but information about follow-up support: a summary of the assessment, advice about social care assessments, entitlement to financial support, regular family visits, parent courses, and local community resources.
In Canada, public health guidance stresses that once autism is diagnosed, supports and services should begin as early as possible – including speech and language therapy, occupational therapy, behavioural support and training for parents, alongside school planning. In the United States and elsewhere, agencies like the CDC and research bodies such as the NICHD repeatedly emphasise that early diagnosis and intervention are associated with better long-term outcomes in communication, social skills and independence. The systems in these countries are far from perfect – many families still face long waiting lists, unequal access and underfunded services – but there is at least a recognised pathway: diagnosis, information, referral to early intervention, access (however flawed) to funding and school planning. Now ask yourself honestly: Can most African parents expect anything close to that? The African reality: Misdiagnosis, diagnosis, then... silence In too many African countries, including Botswana (based on my interactions with families), the pattern is painfully familiar. A child is diagnosed – often late, after years of confusion – and the family walks out of the clinic with a label, “Autism” but no roadmap.
There is no assigned person to guide them through the next steps. No clear explanation of what public services exist, if any. No structured link to the school system. No financial support beyond whatever disability grant might exist in name but not in practice. Governments often point to general disability laws or inclusive education policies and say, “We have covered this.” But we have not. Autism is not adequately addressed by broad statements about “special needs” or “learners with barriers.” It demands specific pathways, training, funding models and long-term planning. An inclusive education policy on paper does not tell a parent where to go tomorrow morning. It does not train the class teacher who will meet their child next year. It does not ensure that the clinic nurse (and sometimes therapists) know what to say (and what not to say) when giving the diagnosis. If parents, advocates and policy makers are serious about change, we need to start asking: In an ideal African context, what should happen, step by step, the moment a child is diagnosed? The six steps below are my own suggestions for how Africa can build a humane, culturally grounded post-diagnosis system. They are not exhaustive—but they offer a vision of what is possible.
Step 1: A respectful, clear explanation – in our languages The first thing parents need is not blame, but understanding. In an ideal African system, the health/social worker would explain in simple, culturally grounded language that autism is: • a different way of processing the world • not caused by witchcraft, curses or bad parenting • not something that needs a “cure,” but a condition that requires support, adaptation and respect. Parents would leave with a written summary in a language they understand, plus contact details of someone they can call. The conversation would highlight the child’s strengths, not just their challenges.
Step 2: No one walks alone – each family gets a guide Immediately after diagnosis, every family should be linked to a designated support person – a social worker, community health worker, or trained parent advocate attached to the clinic or district. Their job would be to: • explain the diagnosis again, slowly, over time • answer questions from parents and extended family • map options based on the family’s reality (rural/urban, income, language) • provide a simple “next three months” plan. In the West, versions of this exist in autism programmes and local councils. In Africa, we already deploy community health workers for HIV, TB and maternal health. We could train some of them to support families after an autism diagnosis.
Step 3: Early intervention as a public service, not a luxury Research is clear: early intervention can improve communication, social interaction and life skills. In our context, that does not mean every child must have expensive one-on-one therapy. It could mean: • basic speech and communication support through district clinics • low-cost group sessions where parents learn strategies and practise together • home-based activities using local materials, songs, games and storytelling • training for community-based rehabilitation workers and early childhood teachers. Crucially, governments must fund this, at least partially.
Parents cannot be expected to pay private fees that are higher than their monthly salary.
Step 4: Automatic link to the school system From a policy perspective, this is where inclusive education often fails autistic children. In an ideal African framework: • the clinic would send a short, practical summary to the local school or education office (with parental consent) • teachers would have basic autism training as part of pre-service or in-service programmes • school leadership would receive guidance on simple adaptations: visual schedules, quiet spaces, shorter instructions, and flexible discipline. This is why generic inclusion policies are not enough. Without autism-specific guidance, teachers are left to guess; parents are left to fight; children are left to struggle or drop out.
Step 5: Social protection and financial support Autism is expensive in Africa because the system is missing. Families pay for assessments, transport, therapy and sometimes private schooling. In an ideal setup: • disability grants or child support schemes would explicitly recognise autism • national health insurance (where it exists) would cover some therapies • rural families would receive transport subsidies • governments would work with NGOs to keep services affordable. No parent should have to choose between rent and therapy.
Step 6: A lifespan view – not just a childhood issue Autistic children become autistic adults. Yet most African policy thinking stops at primary school, if it gets that far.
An ideal framework would: • introduce transition planning in the teenage years • open pathways into vocational training, protected and open employment • provide mental-health support and housing options for adults. This is not charity – it is a labour, equity and human-rights issue. Why the African Union must step in Individual countries are moving slowly, if at all. It is time for the African Union to treat autism as a continental policy priority.
The AU could: • develop a framework on autism and neurodevelopmental conditions • set minimum standards for diagnosis, early support and school inclusion • encourage member states to draft national autism strategies, not just broad disability policies • promote research on autism in African contexts to close the data gap.
Such a framework would give advocates and parents a powerful tool when they sit down with ministers, MPs and budget committees: “This is not just my child’s issue. This is an African commitment.” Africa can build this system Your child has been diagnosed with autism. In too many African countries, that is where the system stops, and parental confusion begins. But it does not have to be this way. With intentional policy, clear pathways, and continental leadership, the moment after diagnosis can become the beginning of a supported journey—not a plunge into uncertainty. Africa can design autism systems rooted in our cultures, communities and values. Africa can choose dignity over confusion. Africa can choose clarity over silence. Africa can choose to support autistic children—not abandon them. The question is no longer “What caused autism?” It is “What will we do next?”