At a local clinic in Accra, Maame Appiah sat on a bench with her 3-year-old toddler. She had noticed something unusual about her child a few weeks after he was born.

Breastfeeding was a challenge, she said. “He couldn’t even suckle. He had breathing issues,” she explained. Each feeding took up to an hour, she said.

Doctors later diagnosed her son with cerebral palsy — a condition that affects a child’s brain and impacts the ability to control muscles in the body. He was also diagnosed with autism spectrum, a complex neurobehavioral disorder.

Appiah sought help — including prayer camps — to no avail.

“Life has been so difficult. First I had depression and lost a lot of weight. I didn’t even know how I was going to handle a brain damaged boy,” she said.

Brain developmental disorders are rarely discussed in Ghana. Experts say it is one of the most neglected health issues in the country.

The lack of adequate awareness and facilities for early diagnosis makes it tough to manage neurodevelopmental disorders in children. Those with special needs often face stigma and discrimination including inadequate healthcare, education and social engagement in their communities.

Appiah has since moved past her grief and seeks help for her child through various therapies once a week including eye therapy, physiotherapy, occupational therapy and speech therapy.

But Maame is not alone. There are thousands more stories like hers in homes across Ghana.

Ama Boatemaa lives with her 19- year-old autistic child in Obom-Kojontor, a suburb on the outskirts of Accra. She said she had to defy her husband just to keep her daughter alive.

“My husband kept insisting that he’s been to so many spiritual homes where he’s been told that our daughter is a marine spirit. He once suggested we poison or kill the child. When I refused, he got very  angry and abandoned us,” she said.

Boatemaa has single-handedly fended for her daughter by managing a small water business. She said that transporting her daughter to hospital or school has been most challenging. Some drivers refused to pick her up because she drools profusely. In fact, her child dropped out of school due to these challenges.

“Sometimes it feels like the whole world is against you,” Boatemaa said. “But I know that the God that gave me this girl will take care of us,” she said.

In Ghana children with autism are highly vulnerable to abandonment, abuse, exploitation, injury and death.

In early 2022, in the central region of Ghana, a 2-year-old boy with autism was buried alive by his grandfather who insisted the child was possessed by  a spirit. If residents and police had not intervened, the child would have died.

Similar incidents may go unreported particularly in rural areas where superstition is widespread.

Supporting children and youth with autism

Mary Amoah Kufour is determined to change the narrative for children with special needs and their caregivers. Her 20-year-old daughter is also on the autism spectrum.

Like many parents of autistic children, Kufour said she was in denial for years when she learned her daughter had autism. She already had two boys without any disabilities.

In 2016, Kufour founded Klicks Africa Foundation, a center for early intervention and support for children under the age of 5, as well as young adults on the autism spectrum.

“Sometimes I see myself as somebody who gave birth in the past 20 years and the child never grows,” she said. Her daughter needs 24/7 support, from bathing and eating to directing her on daily tasks. “Even when she’s hungry, she’s looking at me,” she said.

The number of people with autism has increased worldwide. Their abilities can vary and evolve over time. Some can live independently while others have severe disabilities that require lifelong care and support.

Kufour encourages parents and caregivers to focus on creating opportunities for children with autism to thrive.

“It is OK to cry. It is OK to ask God why this happened to you but you don’t need to wallow in your own pity for long. Because the more time you spend, the more you are wasting this child’s opportunity to thrive and become useful to society,” she said.

According to UNICEF, nearly 240 million children with disabilities face barriers to basic needs including nutrition, health and education.

The country’s 2016 inclusive education policy aims to increase access for children with disabilities in public schools. But the government has yet to fully implement it.

Instead, parents must enroll their children with special needs in learning centers that can cost more than $3,000 per year — a cost-prohibitive fee for most families.

Kufour is able to accommodate families with highly subsidized rates through donations and personal funds.

She said she’s on a mission to demystify autism and advocate for all children with disabilities. The majority at her center have autism while others have Down syndrome or have undiagnosed developmental delays.

At the center, instructors use everyday routines to teach communication and social skills. Students attend daily therapy sessions and visit with a neurodevelopmental pediatrician.

Instructor Akua Amoako Yeboah said that early intervention is critical for achieving certain milestones. Some children who began with various challenges are now seeing improvements.

Elyse Aba Acquah, 16, is on the autism spectrum. Her instructors said she has shown significant improvement with her communication and comprehension skills.

“They teach me how to write. I can write my name, alphabets and subtraction, numbers and we do addition and subtraction, too,” she said.

Children with special needs are routinely left out of mainstream education. The COVID-19 pandemic has only exacerbated the education gap.

A 2021 UNICEF report reveals that children with disabilities are 24% less likely to receive early stimulation and responsive care, and have 42% fewer chances of achieving foundational reading and numeracy skills.

The probability of never attending school is 49% higher for them.

Children with disabilities are also 51% more likely to feel unhappy in their day-to-day lives.  Severe corporal punishment is also 32% greater than for children without disabilities.

Kufour spreads awareness about these challenges by livestreaming with her 400,000 Facebook followers. She said she is already seeing a mindshift among parents and caretakers.

“We’ve made a lot of impact out there,” she said, “But we have a long way to go.”

Visibility and representation

From left, Afi Antonio with winners of 2022 Mr and Miss Autism Ghana Pageant

Kufour is not alone in her advocacy efforts for children with autism.

Model and actor Afi Antonio created “Mr. & Miss Autism Ghana,” a pageant initiative that promotes social inclusion for neurodivergent people.

After doing make-up once for girls with special needs, parents called Antonio to say that their children really enjoyed it.

She said she wanted to be able to model the best of what children with disabilities can do. The project boosts the confidence of parents to showcase their children’s gifts. And she hopes that their participation will open doors to more opportunities for them.

“It’s been my prayer that corporate institutions or someone will use them as brand ambassadors so that people can see them on billboards and [on TV],” she said.

Kufuor said that with increased awareness and support, all children with special needs can lead full lives. Her daughter has already started showing interest in fashion and hopes to pursue a career in modeling.

“Inclusive education cannot be preserved for those who can afford it,” adding that all children deserve to reach their full potential.

Source: Ghana/ Ridwan Karim Dini-Osman