Facing stigma, finding glimmers of hope : Goats and Soda : NPR

Mary Gachoki had learned about autism spectrum disorder from a caregiving course she’d taken in college. When her son was 2 years old, she recognized that he was displaying traits associated with this neurological condition. He wasn’t making eye contact, he stopped talking and he began flapping his fingers – a common behavior for people with autism as they seek to calm themselves.

Deep down, the 34-year-old single mom knew he likely had autism. But, she says, she was in denial.

When she did get a diagnosis, she says, the news “felt burdensome because I am a single mother. I am not strong mentally. I need support and reassurance that [my son] will be okay someday.” (Editor’s note: We are not naming the children in this story to protect their privacy as we discuss their condition.)

Challenges for parents

Around the world, parents like Gachoki often struggle to find reliable information and affordable support for a child with autism. The challenges in Africa – and in Kenya, where she lives – are daunting.

A review of current literature on autism in Africa, published in 2023 in The Annals of Medicine & Surgery, found that “diagnosis and treatment access remains limited due to various challenges.”

An article in The Journal of Pediatrics, Perinatology and Child Health published in 2022 points to “limited access to resources and trained professionals” for children in Africa with autism spectrum disorder. The authors are now conducting a review of existing studies on the issue to “inform health-care policies direction and facilitate the creation of early interventions.”

One result of this shortage of local services is that many children with autism don’t get a diagnosis in their first years of life. Research has shown that early interventions make a huge difference in outcomes for children with autism, so delays in diagnosis can have a lifelong impact.

And even as caregivers struggle to find help they must cope with misconceptions and stigma about the condition.

When Gachoki’s relatives learned of Mary’s son’s diagnosis, they blamed witchcraft.

“Preachers and traditional healers [in Kenya often] believe that autism is caused by witchcraft,” says Dr. Lillian Kerubo of Kiambu County Hospital, a pediatrician and behavioral therapist who has for years worked with children who have autism. These preachers and healers tell parents that therapeutic intervention is not needed. Instead they might offer an herbal concoction with a promise that it will help the child or they’ll advise the parents to pray and fast.

Other misbeliefs and myths circulate: Some families believe that if a mother eats eggs during pregnancy that can bring on autism, and that boys typically miss developmental milestones so there shouldn’t be a need to consult a physician in such cases.

“Many parents, especially in the rural areas, need to know that an autistic child is a normal child. They should accept them for who they are and support them in life, but most importantly, they need to learn more about autism, understand autism, and manage their expectations,” says Kerubo.

For this story, we interviewed parents from several families who had made the decision to seek support – with mixed results.

A struggle to get help for her son

Mary Gachoki lives with her son in a tiny single room in an informal settlement on the outskirts of Nairobi. She finally decided to seek a diagnosis last year. She visited a doctor at the Kenyatta National Hospital in Kenya, who referred her to the Kenya Institute of Special Education for assessment.

The staff tested her son and informed her that he had autism. There was no charge for the assessment but the Institute does charge for its therapeutic services. Gachoki, who earns money by doing day work for local families, signed her son up for a session of heated pool therapy; studies have found it helpful in improving behaviors and social interactions in children with autism. It cost 1,500 Kenyan shillings – about $10. She says she didn’t have the money to pay for follow-up sessions.

Nor are there any programs for children with autism at the small, unheated public school that her son attends – and where, she says, the teacher points a cane at her son if he’s restless (but doesn’t administer physical punishment, which is prohibited in Kenyan schools).

Mary Gachoki’s dilemma is common, says Luke Laari, a lecturer at the University of Ghana in the Department of Public Health and lead author of the The Journal of Pediatrics, Perinatology and Child Health article on autism in Africa. He says that in cities, most of the parents he surveyed said they were unable to afford fees charged for therapies and services.

Specialists who provide therapy for children with autism are in “limited in supply” in Africa – and inaccessible to the rural poor, he adds.

“Parents of autistic children must be pragmatic in their expectations regarding their children’s development,” Laari says, urging governments to provide specialized materials for teachers and students as well as financial aid for parents of children with autism.

Jumping for therapy

In a middle-class residential neighborhood Nairobi, two young brothers are jumping and giggling with their dad on an indoor trampoline. Their little sister is jumping, too. Caroline Ndebu, their mom, is on the couch, recording them on her phone and cheering them on.

Her two sons, ages 5 and 3, were both diagnosed with autism spectrum disorder and are receiving physical and behavioral therapy. The jumping activity aims to improve balance and motor skills.

The older son works with his therapist on identifying colors and other visual tasks. His parents say his eye contact has improved – he now looks his therapist in the eye.

The parents brought him for diagnostic testing after he began regressing at age 2 – losing his speech, showing signs of antisocial behavior and hyperactivity and exhibiting behavior associated with autism, such as pulling his ears. Ndebu says her siblings had suggested the doctor’s visit.

The younger brother’s case was less pronounced than his brother’s, but he, too, around age 2, started regressing in speech, stopped pointing at things and became unsociable. Trained assessors at his school tested the child and said he also has autism.

Ndebu says that the family immediately put the younger son on occupational therapy and speech therapy to build his cognitive ability. “He picked up well and they do therapy together,” she says. Fortunately, she says, her family has the resources to pay for these services.

“It can get overwhelming. Some days are tough, and others are easy. It does not end with therapy as we have to put in a lot of work for the boys,” she says with a smile.

She has gone on to join Autism Mums KE, a caregivers’ WhatsApp group with over 700 members, for support.

“We encourage each other especially if one had an overwhelming day,” she says.

She has created her own nonprofit group to help parents and caregivers: Gifted Gems. Her goals are to raise awareness about autism, build a repository of online information, train caregivers and provide support systems for them. An upcoming zoom session is entitled “Accepting and Embracing the Diagnosis.”

“The worries that keep caregivers up at night can be resolved by bridging the knowledge gaps, especially in rural regions,” says Peter Mucheru, a speech and language therapist at Tower Valley School, where a number of the students have autism. He believes the WhatsApp group and Gifted Gems are both good examples of programs that educate parents.

Even with support, parents face many challenges. Evelyne Kiarie’s 4-year-old son began exhibiting signs of autism a week before his 3rd birthday. He regressed in speech, avoided eye contact, didn’t interact with others.

The changes confused Kiarie. “I didn’t know anything about autism, and neither did my husband,” she says. “You know, autism is not spoken about a lot in this country.”

Her husband’s brother, who is a doctor, saw the signs and advised the parents to seek support. Since then, therapy has helped the child build his social skills, says his mom – as have swimming lessons.

“It can be overwhelming. Sometimes one wishes to have a break. I envision what the future will be like for him, wondering if he will be independent,” Kiarie adds.

Hope for a better future

It is not just parents who need a greater awareness, says Dr. Kerubo. She emphasizes that health-care professionals need to learn more about autistic children as well – to understand them and to empathize with them rather than feeling sorry for them.

And society may be changing to provide more help for families.

The Kenya Institute of Special Education plans to roll out online classes for caregivers, says its director, educator Norman Kiogora. “We do not have any scholarship programs for children with autism currently,” he says, but he hopes private partners will make this possible.

At present, even without financial aid, Mary Gachoki is hopeful that someday she will be able to provide more therapy sessions for her child.

“He is a good son, very sharp and I love him,” she says. Right now, she says, he only smiles, grunts and cries. “I wish to hear him speak.”

Based in Kenya, Scovian Lillian is a science and health freelance journalist with a focus on Africa. She covers higher education, women’s empowerment, human rights, persons with disabilities, climate change and the environment. Her articles have been published by The Continent, Nature Africa, Democracy in Africa, Talk Africa, The Mail & Guardian, SciDev.net (Sub-Saharan Africa), Technology and Innovation and University World News.