When Rosine Kamagaju set out in 2014 to start advocacy and awareness on autism in Rwanda, she knew she was venturing into an uncharted path that would require passion and commitment given the challenges ahead.

For many Rwandans, including herself, autism – also known as the autism spectrum disorder (ASD), a neurological and developmental disorder that affects how people interact with others, communicate, learn and behave – was largely unknown.

It is a condition that was, and is still looked at with cultural misconceptions, stereotypes and beliefs that do not only result in stigma and discrimination of children who are born with it, but also affects their lives.

There was little information at the time about autism. In most African societies, issues that lead to children being born with certain conditions such as autism or disabilities are linked to cultural beliefs.

When Kamagaju encountered autism and got to know about it, her memory ran back to her childhood back in Burundi, where she grew up as a refugee, and recalled how children they isolated or mocked during playtime were actually autistic children.

It is a developmental disorder that is diagnosed at an early age, because symptoms generally appear in the first two years of life. This means that without proper diagnosis, a child’s life can be ruined early on if they are not accorded proper care.

In an interview with The New Times, Kamagaju, the founder of Autisme Rwanda, narrates how she embarked on this journey to deal with a silent challenge of autism, which up until today remains committed to.

The organisation, which started in July 2014, pioneered advocacy and awareness on autism in Rwanda, and today continues to work with the government and partners to ensure that the condition gets the attention it deserves.

It is a calling she answered but did not anticipate. When her family returned to Rwanda in 1994, she worked with children who were separated from or lost their parents in the 1994 Genocide against the Tutsi and one year later, she went to France, where she got a job working with children with autism.

"When I got there, I was surprised. It was the first time I had encountered a condition known as ‘autism’. I immediately noticed that the traits of these children were similar to those of the children I saw growing up in Burundi and Rwanda,” she says.

It was shocking for her, recalling how these children were neglected and dejected.

After one year of dealing with children with autism, Kamagaju enrolled at the Université Claude Bernard Lyon 1 in France, where she pursued a course in behavioural analysis.

At this point, she had dived deep into the world of autism, aspiring to learn more and do more. As they say, opportunity meets the prepared. In 2010, Rwanda and Belgium initiated a programme which was known as MIDA des Grands Lacs or Migration for Development in Africa.

The project, which was implemented by the Ministry of Foreign Affairs and Belgian cooperation, gave her and other skilled people an opportunity to train people who work with children with different disabilities. It covered Rwanda, Burundi and Democratic Republic Congo (DRC).

Kamagaju’s choice was to return to Rwanda and train people working in different centres handling children with disabilities. She was surprised to find that the staff and teachers who were dealing with autistic children knew nothing about autism.

Even the care accorded to these children was not appropriate. She started with advocacy and awareness, so that people can understand what it is all about.

Luckily, the media helped, picking up her story and what she was here to do.

At the time, parents told her that they did not know what to do or where to take their children. It was a difficult situation because her own children were young and needed to be taken care of.

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"It was necessary for me to talk to my family to see if the choice I was making was possible, which is why I consider my family my partners in this process, because if they didn't accept it and support me, I wouldn't be able to do it,” says Kamagaju, whose family still lives between Rwanda and France.

While in Rwanda for the training, Kamagaju consulted with the late psychologist Dr Naasson Munyandamutsa, and Gasana Ndoba, founder of Tubiteho Association, with whom she sat down with and plotted ways of starting an organisation dealing with autism. In 2014 July the dream became reality, with the support of some friends.

Starting out

It was literally starting from scratch. "We started with only six children, and I remember when I raised the issue in the 2015 National Dialogue ‘Umushyikirano’, almost everyone told me that autism does not exist here,”

"It is a condition that was unknown,” she says, adding that the word ‘autism’ did not have a Kinyarwanda word for it.

Over the past 10 years of their existence, Kamagaju says they have to do whatever they can, within their means, and with the support of the media, they have been able to reach as many people as possible.

"Today we are receiving many children at the centre because people listen to the radio and we mention signs of autism in a child, which generally appear in the first two years of life, parents or guardians are able to identify these signs and they reach out to us or go to see a doctor,”

"There are many hospitals which refer children to us when they identify symptoms of autism, and recommend that the child is brought to Autisme Rwanda,” she says.

This is something that makes her happy because at least the advocacy and awareness has had an impact today many Rwandans are starting to understand what autism is.

Kamagaju says they also work with the Ministries of Health, Education and soon, Local Government, which show the government’s commitment to intervene in the fight against autism, much as gaps remain, especially in regard to special needs education for autistic children.

The other issue she points out is that caring for a child with autism requires a lot of resources, and the reason they are able to accept the children until today is because they have been able to find partners who pool resources to reduce the cost of caring for the children.

Her mission was to help ordinary Rwandans struggling with autistic children. However, today, people bring their children from abroad to seek treatment and support in Rwanda.

A calling she answered

For Kamagaju, encountering autism was a life changing journey. When she met children with autism, it was an eye-opening experience, discovering that these children who were isolated as she grew up, are capable of learning, loving and can adapt well when given the right training.

Among other things, she says today they have been able to train autistic children to a point where they can safely go regular schools and adapt, including those who could not be able to help themselves with certain tasks such as hygiene.

Kamagaju says ASD comes in many forms, which is what is more confusing when it comes to dealing with it. Some children will not eat or be able to sleep, others can be agitated or aggressive – each case comes with its own characteristics.

She says they have been able to take children and parents out of difficult situations, where parents could not sleep or receive guests at home because of a child’s condition.

Perhaps this could be the reason many in the past related autism to witchcraft or disability, because they could not figure out how to help these children.

"I would say parents have an important role to play because when they work with us, it becomes easy to teach and follow up the child,” Kamagaju says, adding that it also helps them to accept and embrace the fact that their child has autism.

ALSO READ: Why support is crucial for parents of autistic children

From an accountant to a caregiver

Growing up in Burundi, Kamagaju wanted to be a judge or a lawyer but because of limited options, she was oriented into accounting but that was not her thing.

Her first job with Save the Children in 1994, working with children who were separated from or lost their parents in the genocide in a way played into her decision to support children encountering difficulties in life.

The one year she spent with the children, listening to their harrowing stories, what they went through and later an encounter with autism, which she knew was a neglected condition back home, made her ask herself what she could do to make a difference.

In France, through her husband’s family, she met Patrick Valentine, who was a director of an autism centre, who reasoned that since she had dealt with children who had gone through difficulties, she can equally deal with autistic children.

"I didn't know anything about autism at all,” she says, adding that she was given the training and skills she needed and it was love at first sight. She felt like she had known the children for a long time.

At the same time, she remembered how they used to discriminate against the children, side-lining them in games because they didn’t know how to play and it struck her.

"I said to myself, had those children been taken care of, they would be somewhere. The more I got exposed to autism, the more passionate I became. I continued to work, my director appreciated what I was doing,” she recalls.

"I remember one time I went for maternity leave and when I returned, I discovered that they failed to find someone to take up my role and the post and service had been dropped,” she says.

The children had been taken away to different places. She was hurt. It is at this point that she had the conviction to go and study more about autism and that is when she enrolled for further courses in autism management.

Before she could even complete the course, she was called back home to come and be part of efforts to combat the development disorder, which was now becoming increasingly prevalent in Rwanda, with improved diagnosis.

Indeed, when she got back to Rwanda, she found that autism posed a serious challenge that needed urgent intervention.

"It was pretty difficult at the time. We’re not where we want to be but things were much worse back then,” she recalls.

Autistic children exhibit unusual characteristics early on, including learning, speech difficulties and concentration. In developed countries, Kamagaju says they have more advanced methods to identify and treat.

One of the interesting traits of autistic people is that they do not lie, or cheat and when well trained, they improve in all aspects to lead normal lives. Some grow up to become geniuses and experts in different fields.

In this kind of work, each case is handled accordingly. They avoid comparing the children because each one of them is unique in their own way and they respond differently to treatment.

Today, they have 92 children on board and more than 300 who receive services from their homes. The time they spend at the centre depends on the severity of each case.

They are also working with Rwanda Biomedical Centre (RBC) to identify and report cases of autism for early intervention.

Their biggest challenges include lack of information, and enough resources to meet the demand of the services.

The majority of children at the centre are Rwandans, and some from Canada, Europe and US, among other countries. They also receive children from neighbouring countries.

Tuition can go up to Rwf1m, which in a way is also subsidised due to the support they get from different partners. Without that, it could be even four times costly, given the high cost of dealing with autism cases.

A holistic approach

Dealing with autism is a holistic approach that involves not just teachers, parents and caregivers, but also people with a wide range of psychosocial, all of which need to be hired.

ALSO READ: Care for autistic children requires a holistic approach

Kamagaju also relies on volunteers from Rwanda or abroad, people like Albert Gakwaya, who share a similar passion and dedication, who come to play their role at Autisme Rwanda, contributing with their skills and knowledge.

Gakwaya, a psychotherapist and sexologist, based in Belgium, says he makes time every year to come back to Rwanda.

"These are unique children and they have a unique way of handling them. Part of what we do is to make these people have an understanding of autism, the causes and how they can approach it,” he says.

This is a very important phase because embracing and understanding autism helps parents to adjust accordingly. This also helps to dismantle other believes and actions to encourage maltreatment of autistic people.

He provides training in psychotherapy to teachers and other caregivers because most of the work they do relates to psychological understanding of a child right from home to school and communities.

Gakwaya says that some parents take long to acknowledge that they have an autistic child or remain in denial, instead of focusing on seeking support for the child and identifying their abilities.

"It is a continuous journey. We are somewhere today, but there is a lot more to do to achieve a mindset change on autism,” Gakwaya says, adding that annually he finds time to travel back home and support Kamagaju’s efforts to treat and create more awareness on autism.