Autism remains widely misunderstood in parts of Africa. A mother in Guinea fights for her child

FRIA, Guinea (AP) — Kazaliou Balde’s parents became concerned about him as a young child because he avoided eye contact and had difficulty communicating.

First, the family in the West African country of Guinea consulted a traditional healer who recommended protective amulets. Later, when the boy was dragging himself on the ground instead of walking, they took him to a hospital in the capital Conakry, where he was diagnosed with autism, which the family had never heard of before.

They had no neighbors either. Some made rude comments about the child.

“Some people suggested I take him to the bush and throw him away,” said Kadiatou Diallo, the 55-year-old trader’s mother.

Misconceptions about children with autism are common in parts of Africa where reliable data, awareness and government support are lacking. Some mistakenly attribute autism to evil spirits. Experts say misunderstandings often delay diagnosis and lead to stigma for children and their families.

Autism, now known as autism spectrum disorder, is a complex developmental condition that affects people in different ways. It may include delays in language, learning, or social and emotional skills. For some people, profound autism means being nonverbal and mentally disabled, but the majority of people experience milder effects.

The Guinean government does not keep records on autism. The World Health Organization says that approximately one in 127 people worldwide will have autism in 2021, but notes that the prevalence is unknown in many low- and middle-income countries.

Diallo decided to stand up for her son and ask for better care. He said he had four children but loved her especially because “I suffered so much with him.”

There is little support for autism in Guinea

In Guinea, a country with a population of approximately 15 million, only a few schools provide education for children with autism, and their costs can reach up to $300 per month. According to the World Bank, the minimum wage is 550,000 Guinean francs ($63) per month and many families cannot afford it in a country where 43.7 percent of citizens live below the poverty line.

Dr., a psychologist and clinician in Conakry. “Care for autism is very poor in Guinea,” said Alhassane Cherif. “Private organizations and non-profit organizations are the only organizations that address this disorder and train personnel to attempt to identify children.”

Balde first attended both private and public schools, but none of them suited him. His mother said his teachers did not introduce him to reading and writing, and she recalled their comments that her son “didn’t have any opportunities for school.”

“I refused to take these negative judgments into consideration. I refused to take him out of school,” Diallo said.

She said her late husband “went to every corner of the country” to find help for their son before he died in a car accident.

The solution emerged in their hometown.

In 2023, Balde enrolled in the newly opened Salim Foundation for Autistic Children, a rare free school for children with autism. He was conducting an outreach program when school officials learned of Balde and visited his family.

The school educates her and 14 other students in a large home with three teachers. There are brightly colored toys and animal pictures on the walls.

The school, which is registered with Guinea’s education authorities but receives no government funding, is the brainchild of social worker and philanthropist Mariam Aisha Barry, who says her autistic daughter is her inspiration.

At school, children are taught basics such as identifying objects and assembling toys, as well as everyday skills such as using the TV remote control.

Last year, the school held what it called the country’s first international seminar on autism.

“Our mission is to break the stigma surrounding autism through awareness, family education, and advocacy for better care. These children deserve acceptance, understanding, education, and unconditional love,” Barry said.

Yet Balde, now 15, has had to spend his life outside of school away from many community members because they attribute his condition to a still unknown “evil” and want him to be avoided.

“I categorically refused,” his mother said.

A teacher says many children are being kept secret

Studies of autism tend to be conducted in high-income countries, with less attention given to places like Guinea. Experts say this makes it difficult to identify risk factors or plan effective intervention strategies.

Sub-Saharan Africa is “critically understudied” in autism research, according to a 2023 study from the Review Journal of Autism and Developmental Disorders, which said the region’s “rich genetic diversity” could improve understanding of autism globally.

This gap has prevented many parents from seeking help.

“We have 15 autistic children here, but there are several hundred in this city. Some parents hide them at home to avoid ridicule and stigma,” said Hassanatou Diallo, Salim school’s advocacy officer.

Balde’s mother said that she would not give up on her son’s education despite the difficulties.

“My biggest wish is for him to be able to read and write,” he said. ___

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