The 4-year-old Cote d’Ivoire boy couldn’t walk, speak or feed himself. He was so unlike most other kids that his grandparents hesitated to accept him. The slightly older Kenyan boy was so restless that his primary-school teachers beat him, until they discovered he was a star pupil.
The two children reveal different faces of autism — and how society sometimes reacts to the condition.
Videos of the boys appear in “Autism: Breaking the Silence,” a special edition of VOA’s weekly Straight Talk Africa TV program. It was recorded Wednesday before a small studio audience of people who live with the condition or deal with it professionally.
The program’s goal: to help demystify and deepen understanding of autism spectrum disorder. It affects the brain’s normal development, often compromising an individual’s ability to communicate, interact socially or control behavior. The condition can range from mild to severe.
New CDC findings
New findings released this week by the Centers for Disease Control and Prevention indicate an increase in autism’s prevalence in the United States.
The agency estimates it affects 1 in 59 children, up from 1 in 68 several years ago and 1 in 150 almost two decades ago. The research is based on studies of more than 300,000 8-year-olds in 11 U.S. states.
Globally, one out of every 160 children has an autism spectrum disorder, the World Health Organization reports. Rates of autism are harder to determine in low- and middle-income countries, including those in sub-Saharan Africa with limited access to clinicians.
Everywhere, “poor people get diagnosed later,” Scott Badesch, president of the Autism Society of America, said in a video overview that set the stage for discussion. “… There’s more services today than ever before but there’s nowhere near the services needed for all who need help.”
A complex condition
Stigma and superstition can heighten the challenges.
In parts of Africa, youngsters with autism “are labeled as devils and they’re not diagnosed and they are not given treatment,” Bernadette Kamara, a native of Sierra Leone who runs BK Behavioral Health Center in a Washington suburb, commented from the audience.
Some people believe the disorder is punishment for a parent’s bad behavior or an affliction that can be prayed away, said Mary Amoah, featured with 15-year-old daughter Renata in a related VOA video.
“They don’t understand this is purely a medical condition. It can happen to anyone regardless of your background,” said Amoah, coordinator at a treatment center in Accra, Ghana, for children with disabilities. “A lot needs to be done in our part of the world in terms of education, acceptance and understanding.”
Researchers haven’t determined the exact cause of autism, though they cite genetic and environmental factors.
Panelist Susan Daniels, who directs the office of autism research coordination for the National Institute of Mental Health, part of the U.S. National Institutes of Health, stressed that research supported by the NIH and CDC shows no link to childhood vaccines.
Though the condition has no cure, early intervention can improve the quality of life for people with autism and their families.
Parents need to observe their children closely from infancy, advised Dr. Usifo Edward Asikhia, clinical director of the International Training Center for Applied Behavior Analysis in Lagos, Nigeria.
“When you have a baby at the age of 12 [months] that cannot babble, that’s a signal,” he said. Another is an inability to grasp objects, a sign of low muscle tone common in autism.
Other hallmarks include lack of eye contact or sensitivity to sounds, Daniels said. She added that a definitive diagnosis “can’t really be done accurately until age 2. But most kids aren’t diagnosed by then.”
“Children with autism in Africa tend to be diagnosed around age 8, about four years later, on average, than their American counterparts,” the Spectrum Autism Research News site reported in December.
Call for cultural sensitivity
Some of those indicators could mislead when assessing African children, said panelist Morenike Giwa Onaiwu, a Texas-based member of the Autism Women’s Network.
“In a lot of African cultures, it’s customary not to make direct eye contact. That’s not a red flag,” said Onaiwu, whose parents came from Nigeria and who learned she was autistic only when two of her own six kids were positively identified with autism. “In terms of not babbling? We speak when we have something to say. … Certain things culturally may be missed because of the way diagnostic criteria are viewed through Western standards.”
While autism generally is associated with low IQ, the condition also affects people with high mental abilities.
If they can “express themselves in some way, they’re actually geniuses,” said panelist Tracy Freeman, a Washington-area physician who has an autistic child. “Their challenge is neurodiversity and getting people to recognize their intelligence.”
At one point in the discussion, moderator Linord Moudou noticed Onaiwu twisting a metal coil in her hands. Onaiwu explained that the repurposed Christmas ornament is a “stimming” device for repetitive motion that provides relaxing sensory stimulation.
“It helps to calm me,” Onaiwu said. She has other strategies: “Sometimes you might see me rocking. … This kind of helps me to navigate in the neurotypical world.”
Growing role for governments?
Asikhia said families dealing with autism had few public supports in Nigeria or elsewhere in Africa. Most schools lack training in developmental delays that should be flagged for physicians, he said.
“Those teachers just don’t know what to do,” he added.
Many African countries lack laws ensuring public education or health interventions for youngsters with autism or other developmental disorders.
But Chiara Servili, a child neuropsychiatrist and WHO technical adviser on mental health, sees rising interest. Representatives of more than 60 countries supported a 2014 WHO resolution urging member nations to develop policies and laws to ease “the global burden of mental disorders” and to devote “sufficient human, financial and technical resources.”
Many governments once focused just on improving child mortality rates, she said in a phone interview. Now, there’s “much more awareness not only that they survive but thrive. There is a new focus on early childhood development.”
The WHO is trying to improve supports for family caregivers as well as for teachers, social workers and other professionals in positions to encourage clinical evaluation, Servili said.
With international partners, the organization has developed a guide for caregivers, usually parents, to nurture children with developmental issues. For instance, “we teach them strategies so they can better engage children in play. Sit down at the level of the child. Provide some toys or some object from the house, observe what the child is doing and try to follow the lead,” Servili said. “… Reinforce any attempt to communicate.” (VOA)