August 6, 2015
When it comes to autism, wealthy nations seem to have it all: the most advanced research, the highest prevalence rates, and the most money to diagnose and treat the disorder.
In less affluent countries, the opposite is true: Research is scant or nonexistent, reported prevalence rates are low, and little or no money is allocated to diagnose and treat autism.
The disparity is no coincidence. Countries that report the highest autism rates are those with the most researchers and doctors devoted to looking for and treating it.
The world’s poorest countries haven’t done enough research to determine how many of their citizens are autistic, and health officials who say autism is nonexistent in their regions likely don’t know how to identify it, experts on the disorder say.
“Culture affects many things, including how someone interprets symptoms and which symptoms they would decide to seek help from a medical doctor to alleviate,” says Dr. Carla Marienfeld, a psychiatrist with Yale Psychiatry Residency’s Global Mental Health Program, which aims to increase awareness of global mental health issues and social disparities.
The rate at which autism is recognized varies widely around the world. About one child in 160 has an autism-spectrum disorder, an umbrella term for a wide spectrum of neurobiological disorders, according to research by the World Health Organization conducted in high-income countries in the Americas and Europe.
Some studies conducted in those regions suggest the rate could be much higher. One in 68 U.S. children has autism, according to a March report by the U.S. Centers for Disease Control and Prevention.
Despite a lack of research in the world’s poorest countries, and even though some potential causes of autism are specific to postindustrial nations, experts say rates could be similarly high across the globe.
Detection of autism is simply better in developed countries, the Harvard College Global Health Review noted in 2013. Where little is known about autism, parents are apt to interpret children’s developmental delays in terms of religious beliefs and cultural myths.
“Some people believe it’s because of their sin in a previous birth,” says Suguna Fernando, a teacher at the Chitra Lane School for the Special Child in Sri Lanka. “It’s karma. Some parents blame themselves.”
In some countries, even top doctors and health officials aren’t familiar with autism.
“Autism is a very rare case in Zambia,” says Dr. Ndashi Chitalu, a senior pediatrician at the University Teaching Hospital at the University of Zambia. “Personally, I have not seen one case in my over 20 years of practicing.”
Zambia’s Ministry of Health spokesman, Dr. Kamoto Mbewe, says autism isn’t a problem in his country.
“It is one disease that I personally just watch in movies,” he says.
One movie in which Mbewe might view a depiction of the disorder is 2012’s “El Pozo” (“The Well”), an Argentine film about a family grappling with a grown daughter’s autism.
Argentine researchers and parents are making strides in educating the public about autism and developing effective ways to treat it.
“Music therapy is one of the best disciplines to treat autistic children,” says Horacio Joffre Galibert, president of the Argentine Association of Parents of Autistics.
“Music brings happiness to the family and allows autistics to communicate.”
Galibert’s association, a nationwide network, has 250 active members. It provides counseling, instruction in the psychology of autism, and legal advice. It also trains grandparents, aunts, uncles and other family members in the care of autistic children.
“We, the parents, are the ones who take the reins of the treatment of our children,” Galibert says.
In poorer countries, however, families struggling to survive lack the knowledge and resources to grab those reins.
“It is difficult to mobilize parents. They are busy trying to make ends meet,” says Ruth Owino, a parent working with Uganda Parents for Children with Autism.
There are no specialists to treat autistic children in Uganda, Owino says. Owino’s group formed more than a decade ago but has just 30 members.
Mulago National Referral Hospital in Uganda, a state-run facility with more than 1,500 beds, operates a weekly clinic for autistic children. The clinic diagnoses three to five autism cases each week, says Dr. Joyce Nalugya, a consulting psychiatrist at the hospital.
The clinic needs a multidisciplinary team that includes behavioral therapists, speech and language therapists, occupational therapists, psychologists and psychiatrists to treat autistic patients, Nalugya says. But it’s tough to assemble such a team because the government doesn’t employ specialists in all those fields.
Families in low-income countries frequently treat poorly understood psychiatric disorders with traditional folk practices.
Parents often bring mentally disabled children to the school where Fernando teaches in Sri Lanka after herbal medications, incantations and other approaches have failed, says Champika Mahapatuna, the school’s principal.
“We don’t laugh at these practices of the parents because it’s their desire to believe in something,” she says. “But after seeing their child in our school, all the parents have so far gradually dropped the faith healing and actively participate in doing the therapy at home.”
Sri Lanka needs to conduct more research on autism, says Hemamali Perera, a psychiatry professor at the University of Colombo.
Sri Lanka has only conducted one study on the prevalence of autism. A 2011 study by the university found that 1 in 93 children ages 18-24 months has the disorder. The university conducted that study in semi-urban areas; it didn’t survey the entire country. Perera was one of the study’s authors.
As long as awareness of the disorder is limited, early detection – a crucial step for good treatment, experts say – isn’t as common as it ought to be.
“Parents wait and wait and wait for their child to begin to talk,” Perera says. “They don’t see the delayed talking as something that can have implications for later learning and intellectual development.”
Because of cultural differences, some signs of autism that are red flags in Western countries don’t spur alarm in Asia.
For example, Sri Lankan parents don’t perceive a lack of eye contact from children as abnormal, even though parents in Western countries readily recognize it as a sign of developmental delay, Perera says.
Cultural beliefs also affect the way delays are perceived, she says. Some Sri Lankans believe that if a baby’s hair is cut too early – or at an inauspicious time – the child will not speak.
Screening tools developed in the West aren’t always effective in Sri Lanka, Perera adds, because mothers around the world don’t recognize symptoms in the same way.
Sri Lanka’s Ministry of Health is rolling out a program to help children with special needs called the National Program for Children with Special Developmental Needs, says Perera, who was part of the program’s development team. The community-based program is training primary health care providers to recognize signs of autism and refer those children for screenings at a specialty clinic.
In addition, the World Health Organization is implementing its Mental Health Gap Action Programme in Sri Lanka, among other countries. That’s a similar program that aims at scaling up services for mental and neurological disorders, and trains community health workers and primary health care providers to recognize signs of autism.
Perera stresses that an autism diagnosis is a cause for hope. Once a family recognizes and learns about the disorder, everyone involved can engage in effective treatment.
“There was a time when the prognosis was gloomy,” she says. “I dreaded telling a mother that her child had autism. But now I will boldly tell them, and then say, ‘Now let’s get going!’”
Apophia Agiresaasi in Kampala, Ivonne Jeannot Laens in Buenos Aires, Manori Wijesekera in Colombo and Prudence Phiri in Lusaka contributed to this report.
GPJ translated interviews from Sinhala and Spanish.