Mary Gachoki learned about autism spectrum disorder during a nursing course she took in college. When her son was two years old, she noticed that her son was exhibiting features associated with this neurological condition. He didn’t make eye contact, stopped talking and started flapping his fingers. This is a common behavior seen when people with autism try to calm down.
Deep down, the 34-year-old single mother knew she might have autism. But she was in denial, she says.
When she was diagnosed, the news “felt like a burden because I’m a single mom. I’m not mentally strong and I need support and reassurance,” she says. [my son] Someday, you’ll be okay.” (Editor’s note: The children are not named in this story to discuss their condition and to protect their privacy.)
Challenges for parents
Around the world, parents like Gachoki often struggle to find reliable information and affordable support for their children with autism. The challenges in Africa, and in Kenya, where she lives, are daunting.
A review of the latest literature on autism in Africa.published in 2023 Annals of Medicine and Surgery, It found that “access to diagnosis and treatment remains limited due to a variety of challenges.”
Article Journal of Pediatrics, Perinatology and Child Health A paper published in 2022 found that children with autism spectrum disorders in Africa have “limited access to resources and trained professionals.” The authors are currently conducting a review of existing research on this issue to “inform the direction of health policy and facilitate the creation of early interventions.”
One consequence of this lack of community services is that many children with autism are not diagnosed in the first years of life. According to research, Early intervention can make a huge difference in outcomes for children with autism, so delaying diagnosis can have lifelong consequences.
And caregivers must deal with misconceptions and stigma surrounding the condition while struggling to find help.
When Gachocki’s relatives learned of Mary’s son’s diagnosis, they accused witchcraft.
“Preachers and Traditional Healers [in Kenya often] “We believe that autism is caused by witchcraft,” says Dr. Lillian Kerbo of Kiambu County Hospital, a pediatrician and behavioral therapist who has been working with autistic children for many years. These preachers and therapists tell parents that therapeutic intervention is not necessary. They may recommend a concoction of herbs that promise to help the child, or encourage parents to pray and fast.
Other misconceptions and superstitions are widespread. Some families believe that eating eggs during pregnancy can cause autism, and boys usually miss developmental milestones, so there is no need to consult a doctor in such cases. , I believe.
“Many parents, especially in rural areas, need to know that their autistic child is a normal child. They need to accept them for who they are and support them in life, but most importantly, they need to know that their autistic child is a normal child. “We need to learn more about the disorder, understand autism, and manage their expectations,” Kerbo says.
For this article, we interviewed parents from several families who had made the decision to seek help, with mixed results.
struggles to get help for son
Mary Gachoki lives with her son in a small room in an informal settlement on the outskirts of Nairobi. She finally decided to get diagnosed last year. She visited a doctor at Kenyatta National Hospital in Kenya and was referred by her doctor. Kenya Institute of Special Education for evaluation.
Staff examined the boy and told him he was autistic. There was no fee for the evaluation, but the institute charges a fee for treatment services. Gachoki, who earns money by working day jobs for local families, signed his son up for a heated session. pool therapy; research has shown that it can help improve behavior and social interactions in children with autism. The price was 1,500 Kenyan shillings, or about $10. She says she didn’t have the money to pay for follow-up sessions.
Additionally, her son’s small, unheated public school does not have a program for children with autism, and when her son gets restless, his teacher uses a cane (though corporal punishment, which is prohibited, is prohibited). she says. at a school in Kenya).
Mary Gachoki says her dilemma is common. luke larryis a lecturer at the School of Public Health, University of Ghana. Journal of Pediatrics, Perinatology and Child Health Articles about autism in Africa. She said most parents surveyed in urban areas said they could not afford treatment and services.
Specialists who provide therapy to children with autism are in “limited supply” in Africa and inaccessible to poor people in rural areas, he added.
“Parents of children with autism must have realistic expectations regarding their child’s development,” Lari said, adding that in addition to financial support for parents of children with autism, teachers and It calls on governments to provide specialized teaching materials to students.
jump for treatment
In a middle-class residential area of Nairobi, two young siblings jump and laugh with their father on an indoor trampoline. Their younger sister is also jumping. Her mother, Caroline Ndebu, sits on the couch, cheering them on as she records them on her phone.
Her two sons, ages 5 and 3, have been diagnosed with autism spectrum disorder and are receiving physical and behavioral therapy. Jumping activities are aimed at improving balance and motor skills.
My oldest son is working with a therapist on color identification and other visual tasks. His parents say his eye contact has improved and he now looks into the therapist’s eyes.
After he started regressing at age 2, his parents took him for diagnostic tests. He was speechless and showed signs of antisocial behavior and hyperactivity, as well as behaviors associated with autism, such as pulling his ears. Ndebu said his brothers advised him to see a doctor.
Although it was less pronounced in my younger brother’s case, he also began to regress in language around the age of 2, stopped pointing, and became antisocial. A trained evaluator at his school examined the child and said he also had autism.
Ndebu said the family immediately enrolled their second son in occupational and speech therapy to improve his cognitive abilities. “He’s getting his energy back and we’re doing therapy together,” she says. Fortunately, she says her family has the wherewithal to pay for these services.
“It can be overwhelming. Some days are tough and some days are easy. We have to put in a lot of effort for the boys, so it doesn’t just end with treatment,” she says with a smile. .
She joined Autism Mums KE, a WhatsApp group for carers with more than 700 members, for support.
“We encourage each other, especially if we’ve had a tough day,” she says.
She founded her own nonprofit group to help parents and caregivers. A gift of jewelry. Her goal is to raise awareness about autism, build a repository of online information, train caregivers, and provide a support system. The title of the next Zoom session is “Accepting and Accepting the Diagnosis.”
“The problems that keep caregivers up at night can be solved by filling the knowledge gap, especially in rural areas,” he says. peter muschel, a speech therapist at Tower Valley School, where many students have autism. He believes that both the WhatsApp group and Gifted Gems are good examples of programs that educate parents.
Even with support, parents face many challenges. Evelyn Kearley’s 4-year-old son started showing signs of autism a week before his third birthday. His speech regressed, he avoided eye contact, and did not interact with others.
The change confused Kiary. “I didn’t know anything about autism, and neither did her husband,” she says. “You know, we don’t talk much about autism in this country.”
Her husband’s brother, a doctor, saw the signs and advised her to seek support from her parents. Since then, therapy, like swimming lessons, has helped the child develop social skills, her mother says.
“It can be overwhelming. Sometimes a person just wants to rest. I imagine what his future will be and wonder if he will be independent,” added Keary. Ta.
hope for a better future
It’s not just parents who need more awareness, Dr. Kerbo says. She emphasizes that medical professionals also need to learn more about autistic children, understand them and empathize rather than pity them.
And society may be changing to provide more support for families.
The Kenya Institute of Special Education plans to roll out online classes for caregivers, its director, an educator, said. Norman Kiogora. “Currently, there are no scholarship programs for children with autism,” he says, but hopes private partners can make this possible.
Even without financial support now, Mary Gachoki hopes to one day be able to offer more therapy sessions to her children.
“He’s a good son, very smart, and I love him,” she says. For now, he says, he just smiles, moans and cries. “I want to hear his story.”
Based in Kenya, Scobian Lillian is a freelance science and health journalist focusing on Africa. She covers higher education, women’s empowerment, human rights, people with disabilities, climate change, and the environment.Her articles are published by continent, nature africa, democracy in africa, talk about africa, The Mail & Guardian, SciDev.net (Sub-Saharan Africa), Technology and innovation and University World News.
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