Remember Us: A Peek Into Childhood Autism in Ghana

Remember Us: A Peek Into Childhood Autism in Ghana

. 7 min read

Nana Yaa Kuffour runs around in circles and spins items around and around. She is not the biggest fan of interacting with others, and she prefers to stay by herself, looking at her hands or singing softly to herself at night. These behaviors—combined with the little girl’s lack of speech and eye contact—are why her mother, Mary Amoah, a teacher for many years, worried that there was truly something “wrong.” For a few years, doctors had told Mary that her daughter had delayed development, but that was where the guidance ended. They did not provide interventions or treatment. Mary eventually sought advice from a spiritual healer, but none of their witchcraft explanations added up. Then, when Nana Yaa was five, one of her mother’s friends from the United States suggested something: “Maybe the little girl has autism.”

Mary joined Facebook groups and started speaking to other mothers. She refused to allow her daughter to be ostracized, forgotten, or hidden from society. Mary started working in a support center for children with learning disabilities. Through a scholarship and additional fundraising, she was able to work with the Autism Treatment Center of America. With the skills learned through that program, Mary pushes other parents to refuse to accept autism as “a dead-end diagnosis” and or a result of witchcraft. Now, Nana Yaa has grown into a young adult who still likes to run around in circles and spin items around and around.

This story of Nana Yaa Kuffour, a young woman with Autism Spectrum Disorder (ASD) growing up in the West African country of Ghana, and Mary Amoah, her mother, is one of many. However, for a heartbreaking number of children and adults in Ghana, autism goes undiagnosed; resource centers remain underfunded; and witchcraft speculations persist, exacerbating societal stigmas.

What is Autism Spectrum Disorder (ASD)?

ASD is defined by the National Institute of Health as “a group of complex neurodevelopment disorders caused by differences in the brain that affect communication and behavior.” According to the DSM-5, a manual made to assist in defining and classifying mental disorders, individuals with ASD may struggle with communication or have a different communication style than others. These symptoms may also impact how the person functions in school, work, or other areas of life and invoke a negative societal view of the individual and their family. Autism is a spectrum disorder due to extensive variance in symptoms, levels of ability, and skills across different autistic individuals. It is visible across ethnic, racial, and socioeconomic groups, and there is no cure.

Research, Diagnosis, and Care in West Africa

Until about 40 years ago, ASD was believed to be a disorder primarily affecting children in Western countries. Now, more research is being done on occurrences in other regions of the world. However, to date, most of the research and literature still come from Western countries. This dearth of information on pediatric ASD in non-Western countries is incredibly concerning. The estimated prevalence of ASD among children under 14 in Ghana is 38.7 percent, which is much higher than the estimated prevalence of ASD globally: 6.2 percent. Yet, there have been few epidemiological studies that are concretely representative of the prevalence of ASD in African children.

This lack of research in Africa makes it incredibly difficult for centers—like Autism Awareness Care and Training Centers, the Hope Setters Autism Center, or individuals working in centers geared toward interventions for children with learning disabilities like speech therapist Mawuyrami Ocloo—to thrive. Like Mary Amoah, they have to navigate another hurdle of correlating programs and research done in Western countries, such as the United States in Mary’s case. Furthermore, these programs do not combat deep cultural stigmas regarding autism because they do not remedy the lack of education of everyday individuals and even some medical professionals.

This lack of awareness in the medical community suggests that it is ill-equipped to diagnose and treat children with ASD. A comparative study in Kumasi, Ghana found that psychiatric nurses had more knowledge of ASD than nurses in pediatrics. This finding is surprising because diagnosing at a young age is extremely beneficial in providing comprehensive care. Furthermore, when the nurses took the Knowledge about Childhood Autism among Health Workers (KCAHW) questionnaire—an assessment taken to understand healthcare workers' knowledge of childhood autism—both groups' knowledge had a considerably low mean score of 11.74 ± 2.82 out of 19.

This low knowledge contributes to a gap between the expected age of diagnosis that allows children to be provided an adequate amount of support and the actual age most children in Ghana and West Africa are diagnosed. For example, many mothers have concerns over behavioral traits associated with autism when the child is around two years old, but they usually do not receive an official ASD diagnosis for the child for years afterwards. Although a study in urban Ghana found an average diagnosis age of 37 months, this result does not account for the likely prospect of later diagnoses in rural areas –  the average diagnosis age in Africa is eight years old. Late diagnoses undermine the awareness of autism and hinder research on the possibility of differences in prevalence across geographical regions. At the same time, this lack of research and autism awareness in Ghana contributes to the lack of diagnoses present. This feedback loop causes a lack of funds and infrastructure to support individuals who have autism and their families.

Education for Children with ASD in Ghana

Special education programs were supposedly started in Ghana in 1936 by missionaries. In 1964, parents of children with disabilities unrelentingly advocated for the creation of the first “home for the mentally handicapped” in 1966, which was converted into a school in 1970. After increased recognition nationally, a Special Education Division (SpEd) was added to the Ghanaian Educational Service in 1985. In 2015, an inclusive education policy was developed to enable equitable access to education for all children, and in 2018, a new curriculum was instituted to appeal to children with diverse learning needs.  

However, despite an international call by UNESCO and advocacy for the acceptance of children with disabilities in the classroom, the outlook for these children in education systems remains very grim. Consequently, the Government of Ghana has identified several agents preventing persons with disabilities from attending school, including physical obstacles, the lack of adequate facilities for assessment, and the negative societal perception of individuals with disabilities. Therefore, a substantial aspect of the reformed 2018 Bachelor of Education (B.Ed.) curriculum for future teachers emphasizes reflecting on individual biases and preconceptions about disabled students to counteract these societal prejudices. This approach assists general education institutions in providing a more holistic and accepting educational framework for students with disabilities.

Societal Perspective: How Does Ghanaian Society Perceive Children with ASD?

A common thread throughout this article is the social stigma associated with mental disabilities in Ghana. For changes to be made, this stigma needs to be eradicated. Many children and adults with autism are continually degraded and judged because of their ASD symptoms. Many are also told that they are influenced by demonic forces; they may even be labeled as demon-possessed or witches or wizards, which is mentally and emotionally distressing.

Parents of autistic children also face social stigmas. An article in the Journal of the International Child Neurology Association focused on Ghana found that parents of autistic children were very unhappy with how they were treated and viewed by the public due to the child’s condition. One parent highlighted the experience of being stared at for no reason at all. Therefore, the prejudiced perception of parents with autistic children, in addition to that of the children themselves, needs to be combatted. Notably, this prejudice disproportionately impacts mothers; many women are forced to blame themselves as they are frequently the primary caregivers of the child, causing considerable psychological strain. For example, a study conducted by researchers from the University of Ghana found that some mothers believed that their child’s condition was due to a transgression they committed against someone else. Furthermore, with about 71 percent of Ghanaians being Christian, many mothers believed that their child’s condition was a result of a fault against God. Therefore, a societal change in how autistic individuals and their families are perceived is incredibly needed.

Needed Changes in Ghana

Ghana currently implements some programs and policies. However, more could be done. Education about the lived experiences of autistic individuals could be improved and expanded by giving the microphone to these individuals in schools. Additionally, to ensure that individuals with ASD are not solely responsible for educating others, the Ghanaian curriculum could incorporate lessons on ASD and other neurodivergent conditions. This approach could lead to fewer individuals believing that ASD is caused by supernatural forces, an increase in the diagnosis of ASD in children, and, therefore, a decrease in the severity of ASD symptoms as the child grows. As stated earlier, changes in societal perspectives are a monumental prerequisite for other positive changes.

In addition, more training about ASD could be added to all medical professionals’ education, not just professionals in psychiatry and pediatrics. General pediatric practitioners could also screen for ASD symptoms at regular check-ups to further increase diagnoses. This combination of improved medical training and more stringent requirements mandating regular ASD screenings would increase the knowledge of professionals and lead to earlier and more accurate diagnoses.

Furthermore, more autism research could be conducted in Africa whether by external or internal organizations. That said, outside organizations doing research in Africa should collaborate with local medical organizations to boost local professionals’ awareness of ASD and ensure that outside research organizations respect local practices and customs. Increased findings focused on Africa are crucial for supporting earlier and more accurate diagnoses, which would foster more awareness of ASD in the general public and boost societal acceptance of affected individuals.

Lastly, in terms of education, an Inclusive Policy has been legislated by the government. However, this Policy could be more student-oriented. Most importantly, an empathetic aspect for students with diverse learning needs is needed. To ensure that students with ASD feel safe and understood, adults with ASD could be involved in creating and teaching lesson plans. All of these changes necessitate increased research in Ghana and increased efforts to spread autism awareness via media campaigns. Educating the public, combatting societal stigmas, reforming education policies, and increasing investments in disability support centers would dramatically improve the lives of children with ASD in Ghana.

Looking Ahead: The Future of Pediatric ASD in Ghana

Ghanaian culture emphasizes supporting others and sticking together. These changes in mentalities and social and educational infrastructures will not change overnight, but incremental actions—such as combating demonic labeling and advocating for increased investments in research and support centers—will help all people feel more accepted and supported. More can be done to build upon the work of Autism Awareness Care and Training Centers, the Hope Setters Autism Center, and individuals like speech therapist Mawuyrami Ocloo and activist Mary Amoah Kuffour. Furthermore, as this article does not provide a comprehensive view of the socioeconomic and educational limitations of people with autism, continual education about this topic is pivotal. This can be done by reading articles from the Ghana Special Education Department and articles by and about Mary Amoah Kuffour and other autism acceptance activists.

Let's not forget our brothers and sisters, sons and daughters. Kae yen.

Emefa Dake

Emefa, a staff writer for HIR, is studying Economics and Global Health. She is interested in the intersection of international development and global health in Sub-Saharan Africa and Latin America.