Autism in Africa: Cruelty and Ignorence

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In the 10 years since then, Yenus says she has encountered hundreds of children locked away or tied up. Like Demas, many parents resort to these extreme measures because they have no other choice. Others hide their children, fearing stigma, which is pervasive in many parts of Africa and casts any disability as the sign of a curse.

Many children with autism across Africa stay out of sight for another reason: Few clinicians have the skills or experience to identify the condition, if they are even aware that it exists. In all of Ethiopia, with its nearly 100 million inhabitants, there are about 60 psychiatrists, and only one who specializes in child psychiatry. Only two public clinics provide mental health services, and both are located in Addis Ababa, where a scant 15 percent of the population lives. In 2015, there were about 50 child and adolescent psychiatrists for the more than 1 billion inhabitants in all of Africa.

Yenus, whose adult son was diagnosed with autism in England, is a beautician by training, but she has made informal diagnoses for many children in her care, including Fikirte. She founded the Joy Center, the first of its kind, in 2002. She and other parents of children with autism have spent the past 15 years trying to raise awareness of autism in Africa. With little guidance available to them, they have also resorted to creating their own treatments to help children on the spectrum learn to communicate and master basic skills. None of these homegrown therapies have been validated, but these families simply cannot afford to wait. “I’m not saying we don’t need that, but that’s not what we need right now,” Yenus says. “What I need is to free those children.”

The help these families need has been slow to come, but researchers are beginning to pick up the pace. Some are tailoring diagnostic methods and treatments for African populations and devising ways to reach rural communities faster. In September, the International Society for Autism Research held a meeting in South Africa — the first of its kind on the continent — to highlight research there. Hundreds of researchers, therapists and family members met for the first time at the three-day event. “My hope is that this will not be a one-off event, but the start of an ongoing process of building networks and connections within Africa,” says conference co-organizer Petrus de Vries, Sue Struengmann Professor of Child and Adolescent Psychiatry at the University of Cape Town. Even the wealthiest parts of Africa have a long road ahead, however. “What we have here [in Cape Town] may probably be as good as it gets in Africa,” de Vries says. “And yet our services for people with autism are almost nonexistent.”

Last year, he and his colleagues laid out all of the peer-reviewed studies ever published about autism in the 46 countries of sub-Saharan Africa. They found only 53 analyses, from just nine countries. About 80 percent of the studies focused on South Africa and Nigeria, two of the wealthiest countries on the continent.

Their analysis did not support Lotter’s claim: The studies found that autism is fundamentally no different in Africa than it is anywhere else in the world. Researchers in Kenya had reached the same conclusion after a similar review the year before. “Personally, I have not come across any indication that there’s anything different about the presentation [of autism in Africa],” says Amina Abubakar, a research fellow at the Kenya Medical Research Institute in Kilifi, who led the Kenyan analysis.

The biggest differences are who gets diagnosed and when. Children with autism in Africa tend to be diagnosed around age 8, about four years later, on average, than their American counterparts. More than half of African children with autism are also diagnosed with intellectual disability, compared with about one-third of American children on the spectrum. This suggests that only the most severely affected children are being picked up: Those who are diagnosed often speak few or no words and require substantial help with everyday tasks such as eating or going to the bathroom. By contrast, in the U.S., the largest diagnostic increases over the past few decades have been on the milder end of the spectrum.

​Abubakar and de Vries are also part of a large international collaboration developing a free open-source diagnostic tool to be used instead of the ADOS or ADI-R. Once it’s ready, which they hope will be within the next five years, they plan to test it in several African countries. In the meantime, Abubakar’s collaborator, Charles Newton, is using the Kiswahili translation of the ADOS to lead Kenya’s first rigorous estimate of autism prevalence. Newton’s group has screened 11,000 children in Kilifi, aged 6 to 9. They selected the children randomly from a cohort of more than 250,000 people the researchers contact three times a year to track births, deaths and migrations in the general population. The hope is that these children represent the range of autism severity in Africa better than those in the earlier, clinic-based studies.

Their unpublished results suggest that about 1 percent of children in Kenya have the condition, in keeping with rates elsewhere. The results are preliminary, Newton says, but they make it clear that “autism is not rare in Africa.”

Both centers also lack documentation about what the treatments entail or formal assessments of children’s behaviors before and after receiving the therapies. Without this information, Zeleke says, it’s impossible to tell whether any of the treatments are effective. She’s working with staff at both schools to teach them how to assess and measure their methods rigorously.