While other children packed for school on the second term’s first day, Beatrice Muhawenimana juggled preparing two of her children for school and caring for one staying home.

Currently, a resident of Bumbogo Sector, Gasabo District, Muhawenimana needs to stay home to take care of her 11-year-old autistic son, who struggles to be integrated into school due to the absence of specialized education for autistic children.

"It is a full-time job to take care of an autistic child. I am the only one who is responsible for him, as I can’t pass on this duty to another person. When we tried to enrol him in school, he couldn’t comprehend, catch up with others or understand what the teacher was teaching. At the time I was living in Nyagatare District,” she said.

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Muhawenimana, who was promised support in Kigali, is now hopeful that her son will soon be able to access special needs education. However, this would not be the case for other autistic children she knows back in her rural community in Tabagwe.

Escaping stigma

Her decision to move to Kigali was not just because of the support she was going to get, but also to flee from the stigma that she and her child were facing due to the misunderstandings and stereotypes surrounding autism. Their journey has been far from easy.

"Ever since it became obvious that my child exhibited unusual behaviours, I became the talk of the village. Many related it to witchcraft,” she told The New Times.

"They used to refer to my son with derogatory terms. It would hurt me a lot,” Muhawenimana, 45, said.

She said many people in rural areas do not consider the condition medically known as Autism Spectrum Disorder (ASD), a mental health disease.

The neurological and developmental disorder that affects how children interact with others, communicate, learn, and behave is barely treated in rural areas mainly due to myths surrounding it, leaving children with autism isolated and uncared for.

Much as sensitisation and awareness of autism have increased over the past decade or so, the understanding of the condition, especially in rural parts, remains very low and shrouded in a sea of cultural beliefs and misconceptions that hamper efforts to treat it.

Similarly, the number of schools and centres for treatment remains low, with more efforts needed to meet the demand for education and support for children with autism.

A wake-up call

Rosine Duquesne Kamagaju, the director and co-founder of Autisme Rwanda, who has been raising awareness on autism through her organisation founded in 2014, said autistic children continue to face many challenges, especially when it comes to education.

"This is mainly because many schools or even teachers don’t know what autism is, let alone know how to deal with autistic children or support them. There’s a need for more sensitisation so that people in our country can understand what autism is because most people don’t know, others have been subjected to lies by people who claim it is witchcraft, while others promise to cure the condition,” Kamagaju said.

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She pointed out that when parents or teachers do not know that a child has autism, it is the child that suffers because they will not be accorded their right to education and their other rights will also be denied.

"My request to leaders and decision-makers is that they should pay attention to this challenge of autism because it concerns all of us as Rwandans. It affects the child’s well-being and education and it affects the family too,” she added.

Her sentiments are shared by Alice Higiro, co-founder of Shenge Children Organisation (SCO), a faith-based humanitarian organisation, dedicated to supporting children with disabilities, including children with autism, who also says a lot more has to be done.

A holistic approach needed

Higiro said few schools can offer special needs education while other challenges go back to the families that don’t play their part.

"The education that they receive in schools has to be complemented by what continues at home. There is a need to also continuously educate even the parents, that’s what we tend to do at Shenge.

"We educate children but then we also have time to spend with the parents and tell them this is how you take care of this child; this is how you can support them at home, this is the kind of environment they need to be able to thrive at home,” Higiro said.

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She added: "Capacity-building and awareness is needed not only for the families but also the communities within which these children exist because when they go out, they are treated in a certain way and they are marginalised.”

This would go a long way in reducing the stigma and discrimination autistic people face, especially in rural areas where the condition is shrouded in beliefs that contribute to the same.

Higiro said when it comes to autism as a disability, the level and learning pace of each child is different, much as the disabilities or diagnosis can be the same, but ASD affects each child differently—something many people do not know.

"Also, depending on their personality, age, background, even the family, all that requires customisation from child to child,” she said, emphasising that taking care of an autistic child goes beyond classroom education.

Noel Nizeyimana, trained to teach autistic children at Shenge Children’s Organisation, said that children with autism have things they like. For example, it can be a colour or a certain object and that is what you focus on when teaching them.

"Autistic children focus on what they love. To be able to teach them, dwell on that thing and also behave like a child. You try to walk with them along this journey and eventually, they can trust you and then you start teaching them.

"The biggest challenge at the moment is the lack of enough schools that can offer special needs education for autistic children. They are few and too expensive for many,” said Nizeyimana, adding that there is also a lack of trained teachers as well as educational materials that are specific for autistic children.

Way forward

Last year in May, the National Council of Persons with Disabilities (NCPD) highlighted the high cost of education for children with autism, emphasising the need for government intervention to ensure accessibility for economically disadvantaged families.

NCPD Executive Secretary, Emmanuel Ndayisaba, told a Senate Committee on Social Affairs and Human Rights that the private nature of schools and centres providing specialised education for children with autism makes them unaffordable for most economically challenged families.

Average tuition for specialised education for autistic children ranges between Rwf500,000 to Rwf2 million per term, depending on the needs of the child and the choice of the school.

In the same month, the then Minister of Education, Valentine Uwamariya, informed the Parliamentary Committee on National Budget and Patrimony that the ministry had sought Rwf650 million from the Ministry of Finance and Economic Planning to support special needs schools this fiscal year, but the amount was yet to be disbursed.

She also noted that the government was looking to establish its own schools and centres to offer special needs education to children, especially those from less privileged backgrounds.

Jean Damascène Nsengiyumva, Executive Secretary of the National Union of People with Disabilities (NUDOR), said there is a need to consider autism as a special disability with its own specific needs.

"People with autism are considered persons with disabilities in general, which means their issues are not given special attention. When we talk about inclusive education, there is no particular attention given to autistic children.

"It is assumed that autism is a mental health condition like any other, but a closer look shows that the challenges autistic people face are different from those faced by people with any other disability,” Nsengiyumva said.

Globally, about 1 in 100 children have autism, according to the World Health Organisation (WHO). Characteristics may be detected in early childhood, but autism is often not diagnosed until much later. The abilities and needs of autistic people vary and can evolve.