Defining care:

Every morning before leaving for work, Harriet Nassuna prepares her daughter Maria’s meals, arranges her clothes, and ensures that she is safe before beginning another day of work.  

For many parents, preparing a meal for a 20-year-old child looks odd. However, this is the routine Nassuna has known since she realized that her daughter needs specialized care because she lives with autism.

leaving home for work means trusting that their children are in safe hands. But for Mrs. Harriet, that choice does not exist. Maria, her 20-year-old daughter who lives with autism, has no caregiver, specialised centre, or support facility where she can spend the day.

“It is not what I wanted for my daughter, but I have no other option,” Mrs. Harriet explains. “I have to work so that we can have food, but I also worry about leaving her alone,” she explains.

Maria’s story represents a much larger challenge facing many families raising children with autism in Uganda. While awareness about autism has increased in recent years, many parents continue to afford care. It is mostly a struggle to access affordable therapy, inclusive education, healthcare services, and social support, according to Autism Care Uganda, one of the charity groups that supports the autism community.

Nassuna noticed early signs that Maria was developing differently from other children. She observed challenges in communication, interaction, and behaviour that made her seek answers.

After medical assessment, Maria was identified as living with autism. However, the diagnosis did not come with the support the family needed. Nassuna discovered that understanding autism was only the first step. The bigger challenge was finding affordable services that could help her daughter develop.

Autism care often requires different forms of support, including speech therapy, occupational therapy, behavioural support, medical follow-up, and specialised education. However, many of these services remain expensive and concentrated in urban areas.

Maria attended school for three years. During that period, she had an opportunity to interact with other children and participate in learning. However, maintaining her education became difficult because she required additional attention and specialised support.

The costs associated with her education became too much for Nassuna to manage.

The question facing policymakers, educators, health providers, and communities is whether Uganda’s current support systems are reaching the families who need them most.

For families surviving on limited incomes, accessing such services becomes a constant struggle.

Nassuna says financial difficulties prevented Maria from receiving continuous therapy and educational support.

“The support is available, but many parents cannot afford it,” she says.

Her experience raises broader questions about whether autism services in Uganda are accessible to ordinary families, especially those living on low incomes.

Education remains one of the biggest challenges facing children with autism in Uganda.

Her situation reflects the experiences of many children with autism who leave school because families cannot afford specialised education.

Unlike traditional classrooms, children with autism may require trained teachers, individual learning plans, smaller classes, and additional learning materials. These requirements often increase the cost of education.

However, school owners and administrators working with autistic learners say providing inclusive education is possible but requires more resources and support.

A special needs education administrator explains that schools supporting children with autism often face challenges such as limited trained teachers, inadequate learning materials, and financial constraints.

“Teaching children with autism requires patience, specialised skills, and resources. Schools want to support these learners, but they also need investment and training,” the administrator says.

Some schools have introduced inclusive education programmes where children with autism learn alongside other students or receive specialised assistance. However, demand continues to exceed available spaces.

Educators argue that supporting children with autism should not be left only to private schools and individual organisations. They say government involvement is necessary to expand access.

Therapists working with children living with autism say the need for services in Uganda is increasing, but available resources remain limited.

According to professionals in the field, early intervention can help children improve communication, social skills, and independence. However, many families discontinue therapy because they cannot afford regular sessions.

A therapist working with autistic children explains that consistency is important.

“Therapy works best when children receive continuous support. The challenge is that many families start the journey but stop because of financial pressure,” the therapist says.

Therapists also face their own challenges, including limited numbers of trained professionals, high demand from families, and inadequate facilities.

Many families travel long distances to access therapy centres, adding transport costs to already expensive treatment.

For parents like Mrs. Harriet, the challenge is not a lack of willingness to support their children. It is the absence of affordable and accessible systems.

Caring for a child with autism can place significant financial pressure on households.

Expenses may include school fees, transport, therapy sessions, medical consultations, communication tools, and specialised learning materials.

For single caregivers or families with unstable incomes, these costs can become impossible to sustain.

Nassuna’s  experience demonstrates how financial struggles can affect every part of a child’s life, from education opportunities to access to therapy.

The situation also highlights the importance of social protection systems for families caring for children with disabilities.

Without financial assistance or affordable public services, many caregivers are forced to make difficult decisions between basic household needs and specialised care.

Beyond money, families raising children with autism also face social challenges.

In some communities, autism is still misunderstood. Some parents experience judgement, discrimination, or isolation because people do not understand the condition.

Mrs. Harriet says Maria’s father abandoned responsibility after rejecting her condition.

“He said he could not have a child like that,” she recalls.

The rejection increased the burden on Mrs. Harriet, leaving her responsible for Maria’s care alone.

Advocates say such experiences show why public education about autism is important.

They argue that autism should not be associated with shame or blame. Instead, communities need better understanding of developmental differences and the support required by families.

The challenges faced by families like Mrs. Harriet’s raise important accountability questions.

Government institutions have a responsibility to ensure that children living with disabilities have access to education, healthcare, and protection. This includes strengthening special needs education, training more professionals, and supporting affordable therapy services.

Schools also play an important role. While many educators are making efforts to include autistic learners, they require adequate resources, trained staff, and sustainable funding.

Healthcare providers and therapy centres must continue expanding services while ensuring families receive accurate information and guidance.

Communities also have a role in creating acceptance and reducing stigma.

Autism advocates argue that improving care requires cooperation between government, schools, health professionals, parents, and organisations supporting children with disabilities.

Despite the challenges, there are examples of progress.

Some schools are developing inclusive learning approaches. Therapists continue supporting families despite limited resources. Advocacy organisations are increasing awareness and encouraging communities to understand autism better.

However, many families remain excluded from these opportunities because of financial barriers.

For Mrs. Harriet, the hope is simple: that Maria can be accepted, supported, and given opportunities to live a meaningful life.

“Children with autism also have dreams and abilities,” she says. “They need people to believe in them.”

Maria’s story is not only about one family. It represents thousands of Ugandan families searching for affordable care, education, and acceptance.

The growing number of children needing autism support requires a stronger response from institutions responsible for healthcare, education, and social welfare.

Until affordable services become widely available, many parents will continue carrying the responsibility alone.

Uganda’s children living with autism do not only need sympathy. They need systems that work, institutions that are accountable, and communities that understand their rights.

For families like Mrs. Harriet’s, the struggle continues every day. But their voices are also a call for change — a call for a future where every child, regardless of disability, has access to education, care, and the opportunity to thrive.