In Guinea and other parts of Africa, autism spectrum disorder (ASD) remains widely misunderstood, often leading to delayed diagnoses and social stigma for affected children and their families. Misconceptions, such as attributing the condition to evil spirits, are common in regions lacking reliable data, public awareness, and government support.
Kazaliou Balde’s parents in Fria, Guinea, first noticed his avoidance of eye contact and communication difficulties. Their initial recourse was a traditional healer who provided amulets. A subsequent hospital visit in the capital, Conakry, led to a diagnosis of autism, a term unfamiliar to the family and their community. Some neighbors reportedly suggested the child be abandoned.
Autism spectrum disorder is a complex developmental condition impacting individuals in various ways, including delays in language, learning, and social-emotional skills. While the World Health Organization estimated about one in 127 people globally had autism in 2021, prevalence in many low- and middle-income countries, including Guinea, is largely unknown. The Guinean government does not maintain specific records on autism.
Access to specialized education is extremely limited and expensive in Guinea, a nation of approximately 15 million people. A few schools catering to children with autism can cost up to $300 per month, a sum far beyond the reach of most families. The country's minimum wage is around $63 per month, with over 43% of the population living below the poverty line, according to the World Bank.
Dr. Alhassane Cherif, a psychologist in Conakry, described the care for autism in Guinea as "very poor," with private organizations and nonprofits bearing the responsibility for identifying children and training staff.
Balde’s mother, Kadiatou Diallo, a 55-year-old trader, refused to accept negative judgments about her son's educational prospects. Despite him not being introduced to reading and writing in previous schools, she insisted he remain enrolled. Her late husband had sought assistance for their son across the country before his death in a road accident.
A turning point came in 2023 when Balde enrolled at the Salim Foundation for Children with Autism, a newly opened, free school in their hometown. School representatives had learned of Balde through an outreach program and visited his family. The school, inspired by social worker and philanthropist Mariam Aisha Barry, whose own daughter has autism, educates 14 students with the help of three teachers. It operates without government funding, though it is registered with educational authorities.
The curriculum at the Salim Foundation focuses on basic skills like object identification and toy assembly, alongside everyday tasks. The school organized what it claimed was the country's first international seminar on autism last year, aiming to raise awareness, train families, and advocate for improved care. Barry stated, "Our mission is to break the stigma surrounding autism through awareness-raising, family training and advocacy for better care. These children deserve acceptance, understanding, education and unconditional love."
Despite these efforts, Balde, now 15, has faced ostracization from some community members who continue to associate his condition with "evil." His mother remains steadfast in her support, stating, "I categorically refused" to let such views dictate her son's life.
Research on autism has historically focused on high-income countries, with limited attention paid to regions like Guinea. This research gap hinders the identification of risk factors and the development of effective interventions. A 2023 study in the Review Journal of Autism and Developmental Disorders highlighted Sub-Saharan Africa as "critically understudied" in autism research, suggesting its genetic diversity could enhance global understanding of the disorder.
The lack of comprehensive data and local research contributes to parents’ reluctance to seek help. Hassanatou Diallo, an advocacy officer at the Salim school, noted that while 15 autistic children attend their school, hundreds more likely exist in the city, with some parents hiding them at home to avoid ridicule and stigma.
Balde's mother continues to advocate for her son's education, expressing her "most ardent wish is that he knows how to read and write."