This article sheds light on the reality of life for many individuals on the spectrum in Nigeria and other African countries.
Efforts to bring autism into the open are only just beginning in many parts of Africa. Such efforts are mainly championed by different organizations across the continent working to demystify and deepen understanding of autism, and most importantly, working to combat the cultural, religious, and traditional barriers families face daily. These organizations also tend to be the only “voice” challenging governments to do more for families in terms of education and support services.
Barriers to neurodevelopmental support in Africa
In Nigeria, the most populous nation in Africa with over 200 million people, there are no policies in place for neurodevelopmental disorders such as autism. One of the most probable causes for this is because autism, in many cases, presents as an “invisible disability”.
Unfortunately, many governments in Africa only see disability in terms of the physically, visually, or hearing-impaired. Even when governmental policy is favorable to such groups, the majority do not experience significant changes in their quality of life. Access to equal rights is not adequately addressed, nor are levels of community integration.
The role of family, parents, and cultural beliefs
Born to African parents and having grown up as a teenager in Nigeria, I understand the importance of family, culture, and religion. These play a central role in African society. They shape daily experiences, dictating how and where individuals live and how they interact with the people around them.
Children are highly valued. The way children “turn out” is seen as a direct reflection of the family. Many parents, regardless of their socioeconomic status, have high expectations of their children—backed by cultural expectations and religious beliefs. Parents want their children to be successful in top professions and push them to achieve this as far as they possibly can.
Bearing all this in mind, it explains why there are serious problems with parental and societal acceptance of children with learning and developmental disabilities including autism.
Stereotypes and stigma around disabilities
Unfortunately, there is a pervasive stereotype of autism in Nigeria (and across the rest of Africa). Many parents face stigmatization within their extended families and communities.
Parents also struggle to accept their child’s condition. Many are “ashamed” of their child’s condition, which usually results in them hiding him/her from the public.
Families are ostracized, with mothers almost always facing the blame for the autistic child’s condition. Sadly, many of these problems are deeply rooted in religious and cultural beliefs. Behaviors of children on the spectrum are sometimes considered demonic, forcing parents to desperately seek help from traditional healers and spiritualists.
Many neurotypical children from poor families do not attend school. Children on the spectrum from these families are even less likely to receive education. The availability and accessibility of screening and diagnostic tools needs to be attended to. Providing facilities and trained professionals to support families and their children with autism spectrum conditions should be a priority.
Lack of research in Africa
A lack of data also has a negative impact on any potential plans for support and services. Recent reviews of global prevalence of autism did not include reliable data from sub-Saharan Africa—even though this region has a population of nearly one billion, 40% of whom are children younger than the age of 14 years.
This can be attributed to stigma, lack of access to medical and therapeutic interventions, under-diagnosis, and cultural misperceptions. All these factors further highlight that studies on autism in Africa are urgently needed.
As mentioned earlier, different entities in Africa are slowly beginning to develop awareness of autism through the actions and influence of non-profit organizations, businesses with corporate social responsibility organizations (CSR), and passionate individuals.
In Nigeria, for instance, one of the country’s largest financial institutions—the Guaranty Trust bank—has a CSR focused on advocacy programs designed to support children on the autism spectrum and their families.
Some international organisations like Jesse’s Place Foundation (JPF), based in the United Kingdom, also work in collaboration with organizations in Nigeria to educate parents, caregivers, educators, and professionals by taking a holistic approach in tackling the challenges faced by families.
This is done through sensitization programs aimed at families, communities, and members of government. It also includes training of key professionals such as social workers, occupational therapists, speech and language therapists, and teachers.
There are also Nigerian “homegrown” organizations, such as Patrick Speech and Language Centre and the Autism Parents Association International, that are committed to advocacy and lobbying the government for improvement of services.
In Ghana, the Pan-African congress on autism has been held annually since 2018. This initiative aims to provide opportunities to build relationships, explore intervention strategies, learn about new research developments, celebrate experiences and achievements, and raise awareness about autism spectrum disorders in the African region.
It goes without saying that 2020 was a year of unchartered waters, as COVID-19 further laid bare the difficulties faced by families with children on the spectrum around the world. A positive aspect is that international virtual family support groups have sprung up across Africa, Europe, and America.
Autism-friendly organizations based in different parts of the world have also taken advantage of video conferencing, using this medium to reach out to interested parties in Africa. Through this, they have facilitated informational and educational forums addressing a range of topics, from mental health to creating enabling environments for autistic children during lockdown.
In addition, some more affluent families now employ the services of therapists in countries such as the United Kingdom and Dubai for teletherapy to support their children during these unprecedented times.
The good news is, Africa is “waking up” to the plight of parents and the lack of services for autistic children and their families. The journey is still a long one, however, the voices of advocates are becoming louder and campaigns are beginning to have some impact on the actions of governments. The mission definitely continues.
This article was featured in Issue 124 – Autism Around the World