Doctors believe 12-year-old Patricia has autism spectrum disorder Credit: R. Joyclyn Wea
Having a child is a time of profound joy for most mothers, and so it was for Anita when told she had given birth to a girl who she named Maureen. But Anita’s dream of living happily together with her family fell apart when she learned that her child had autism spectrum disorder, a neurological condition that affects communication, social interactions, and behavior.
Maureen, now 14, spent her first week as a baby under emergency care. It was not until months later when she fell ill and was rushed to JFK Hospital that a doctor told her mother Maureen had a condition that affected her brain.
This was the beginning of Anita’s nightmare. Her husband walked away from the home, leaving her alone to care for their three children. Anita was forced to drop out of college to focus on her daughter. To support her children Anita now depends upon handouts from siblings and runs a charcoal business. (All the parents and children in this story are referred to by their first names to protect them from the stigma attached to the disorder in Liberia.)
Autism falls on a spectrum. Some people can function almost normally and most people would not know they had it. But when severe, it can take away the ability to speak and make it difficult to show emotion. It can delay mental development and cause social isolation and hyperactive behavior. Maureen’s case has been on the severe end of the spectrum.
“I can’t leave Maureen anywhere. I can’t even carry Maureen to church. When Maureen and I walk on the street, all eyes are on us. I feel bad,” Anita said. “When I carry Maureen among my friends, sometimes they will make fun like: ‘Is this your daughter? Is it you that bore this child?’”
Autism is often passed through genes meaning other family members can have it. Maureen, Anita’s youngest child, is the only one of her children who has the condition. Autism spectrum disorder (ASD), affects about 1 in 100 children globally, according to the World Health Organization. In Africa, limited access to support services can mean autism imposes significant emotional and financial burdens on families, leading to increased stress. Stigma, misconceptions, and restricted access to diagnostic services exacerbate these challenges. In some parts of West Africa, children with autism are considered products of witchcraft. Researchers have found that about 50 percent of mothers of autistic kids have symptoms of depression.
“Maureen’s father left me. He said I am witchcraft; I am the one who made the little girl like this,” Anita said, “It hurts a lot seeing a child without a father with this condition. We are in the same church. When the little girl runs to her pa, he will shame her. That’s the pain I am going through. It’s not easy.”
Anita says she feels this is her fate, and that she will never be able to have another relationship.
“I feel like if I gave birth again, maybe I may get a child like Maureen because I know what I am passing through—so my heart is not on man business again.”
Anita does everything for her 14-year-old daughter: bathing, clothing, and watching her movement is a daily routine. As a result of lifting her growing daughter, Anita underwent incisional hernia surgery in 2021. Her family paid her hospital bills. She needs more surgery for other medical problems but her family can’t help her at this time. She is scared.
“I am going through pain a lot,” Anita says. “I am not supposed to do hard work, but what will I do? Maureen is part of me; I can’t do anything.”
Doctors say autism is a very difficult disorder to manage due to its multiple signs and symptoms and the different disorders associated with it. Some children show signs of autism within the first 12 months of life. In others, autism may not show up until 24 months of age or later.
Another mother, Stephine, was also deeply affected when two of her children were diagnosed with autism. “It broke me. It’s very hard to accept when they give you the news at first and when someone like your husband rejects you and the child,” Stephine said. “There came a time I nearly killed myself.”
Two of Stephine’s four children are believed to be on the spectrum. She had no idea why they collapsed while trying to walk and crawl. She rushed them to JFK Hospital, where she was told by doctors her children had a condition that affected their brains. Stephine says she survived at the mercy of her mother and two siblings who are in Ghana.
Stephine sought help for her children but received no conclusive diagnosis. She spent a lot of money on drugs whenever the need arose, but none of that helped her kids.
“They said they have products for these children. Sometimes it costs $25, sometimes $50 for some products. Mostly JFK said I shouldn’t carry them anywhere, apart from churches where I can carry them for prayer.”
Not all fathers abandon their wives and children after an autism diagnosis. Solomon stayed and took care of his 11-year-old son, Thompson. Solomon left his work to help his wife look after him. Solomon said he refused to leave his wife. Now, they have three other children who are not on the spectrum. He said his major problem has been community reaction, which he attributed to the lack of awareness.
“Thompson does not play without parents or guidance to watch over him because when he goes a distance, he can always be the victim. He has been getting a lot of attacks whenever he goes to play with friends,” Solomon said. “The other day somebody kicked his stomach, and he came home crying. He could hardly walk, and we provided some physical things that we thought could help until we got money to take him to the hospital. We couldn’t trace the person because he cannot talk.”
Solomon said he has helped his son, now 11, to gradually improve. Thompson now does things on his own like his other junior siblings. Speech remains a big challenge but he no longer shows other symptoms of autism.
“I saw this as a need to stand by the family God has blessed me with. That’s how we put our hands together to raise Thompson, but it has been challenging.”
Educating kids with Autism
Despite the Ministry of Education’s inclusive childhood policy, not a single classroom exists in Liberia for children with autism. The policy seeks to bridge the gaps of disparity among learners and ensure that education is provided to all. However, the school system lacks the resources to provide individualized learning plans tailored to Thompson and other autistic kids’ unique strengths and challenges.
“Every time he would fall off in the classroom, and then the school would send for me, and they would tell me to take him home to observe him,” said Solomon in an interview. “It went on until they had to take him from the school. I did this for two schools, so I decided to keep him home and teach him.”
Anita managed to put her daughter in a study class after all the schools in the neighborhood refused her.
“When Maureen sees the children going to school, she can be crying,” Anita said. “But which school will accept a child like this? I want Maureen to go to school. I want Maureen to learn.”
But Anita fears for the future.
“I don’t know what will become of me tomorrow. If anybody is willing to adopt Maureen to help her become somebody tomorrow, I am willing to give her out to the person.”
Maureen with her study class teacher. Credit: R. Joyclyn Wea
Not Enough Resources or Support
Data on autism in Africa is lacking, hindering development of effective programs. Liberia has almost no information on the number of autistic people. To better understand and address these challenges, Agnes Fallah Kamara, a former radio journalist in Liberia, opened the first autism classroom (Arthur and Zwannah Autism Classroom) in 2017 to help autistic children and their caregivers in Liberia. The classroom currently houses 24 kids, but raising funds to support the institution’s work has been challenging.
With the aid of Hidden Truth, a US-based institution that runs programs for children with autism spectrum disorder, Agnes saved a 10 percent tithe from her salary to help single mothers of children with autism and to get Liberian government support. It has been hard.
“It is difficult to get funding from outside and inside of Liberia for my program. I was so tired of going to Liberia to look for funding,” said Kamara, who lives in the United States, “I thought, if I continue to look for funding I will forget what I came here to do: to help those parents that have kids with autism and intellectual and developmental disorder.”
Kamara has three children–none on the spectrum –but as a single mother she feels the need to help autistic kids and caregivers in Liberia and Sierra Leone, where care and support are almost non-existent.
“I want to give opportunities to parents. Every day my heart is broken, bleeding when I see parents, grandparents, and fathers struggle with their kids,” she said.
Rejection in their Communities
These family’s stories are not unique in Liberia. Many children face similar challenges due to the limited understanding and support for autism. The stigma surrounding developmental disorders discourages families from seeking help. As a result many children miss out on crucial early interventions that could significantly improve their quality of life.
“I’m pleading that government, and partner should mobilize in the community to tell them (the community) that the fault is not from the parents or witchcraft,” Stephine said, “We should not reject them (autistic kids) because they are important too in society.”
A Call for Change
Determined to help autistic kids and their caregivers, Kamara’s organization ‘Straight from the Heart International’ will be conducting research in Liberia and Sierra Leone. Through this research, she aims to identify gaps in services, assess community needs, and develop effective strategies to promote inclusivity, accessibility, and empowerment for individuals with disabilities and their families. None of the kids in her program have been clinically diagnosed, but from her observation and years of working with people with such conditions, Madam Kamara believes seven of the 24 kids are on the spectrum.
Can Autism Be Treated?
There is no cure for autism spectrum disorder, and there’s currently no medication to treat it. Although scientists are still trying to understand why some people develop autism, they have determined that risk factors include family members with the disorder, and environmental events such as infection.
In Liberia, doctors have little knowledge of how to diagnose or treat autism.
“If you do pediatrics there will be lectures on autism spectrum disorder,” said Dr. Fokape Beyan Duyenku, OBGYN Specialist at JFK Hospital. “There are people who might specialize after and they may take an interest in working with these children, but in Liberia in medical school, I cannot say we have a special program for autism spectrum disorder.”
Whether someone with autism can live independently depends on their strengths and challenges and their available resources. With early intervention and support, Dr. Duyenku said, autistic children can be independent and not a liability to society or themselves.
“The government should be able to support free treatment programs for these children and support free care programs in schools for these children so that those schools that will carry out these programs will be specialized training for teachers to be able to pay attention to those children,” Dr. Duyenku said. “It’s high time that the government steps in and creates or supports most of the schools to be able to have programs to take care of children with special needs.”
This story was a collaboration with FrontPage Africa as part of the “Investigating Liberia” project. The Swedish Embassy provided funding. The funder had no say in the story’s content.