Autism Awareness In Africa

Autism Awareness In Africa

Like many African-born Africans living in western countries, I didn’t hear the word “autism”, until I immigrated to the United States in my late teens. When I first heard about it, I thought it must be a western thing, maybe due to all the genetically modified “mede-mede” (stuff) in the western food, but my ignorance was quickly corrected as I began to understand more about this disorder from living with my aunt whose son (my cousin) is autistic. Then the light bulb came on… like Ahhhhh… I get it! Where I grew up in Nigeria, kids like my cousin were branded as “Olodo” (dumb) or “possessed” or “ogbanjes” (under the influence of an evil spirit). These kids were often castigated and marginalized as second-class citizens in their families and in the society at large. I write this in past tense, but the sad truth is that the situation is not that different today than it was three decades ago when I grew up. Today, there are numerous accounts of children being maltreated and abandoned on the streets of Africa because they do not fit the “normal” mental and/or physical developmental expectations. The world reeled in anguish about the story that went viral of the 3 year old boy left on the streets of Akwa Ibom in Nigeria to fend for himself for 7 months until a good Samaritan came to his rescue. So many questions run through my mind concerning this heartbreaking situation; what characteristics did this poor boy exhibit to warrant such inhumane treatment by his own flesh and blood? Could he have been delayed in speech? Introverted? Lacking in understanding compared to other kids his age? Did he have unusual or repetitive movements? In a nutshell, could he have been autistic? Autism manifests in different ways in different kids, but the traits listed above in the questions are some of the signs and symptoms of autism.

Unfortunately, the average person living in low to middle income parts of the world, including Africa (you know, the continent with 54 fully recognized countries) is completely oblivious of autism. This brings me to another question that has bugged me immensely since the story of this little boy went viral, which I’m sure a lot of you have asked – How could adults, grown men and women, in the community watch this small boy and do nothing about it? In the video, I noticed as people stood around and watched this gracious lady rescue the little boy; so, clearly he wasn’t isolated in some far away bush (forest) away from “civilization”. After a few days of judging these bystanders, then I decided to “take a chill pill” and put myself in their shoes. I imagined that I live in a society where there is completely no public information regarding autism or other medically recognized mental disorders; where some trusted leaders from religious, traditional and the medical sectors posit that any child that behaves differently from “normal” must be suffering from supernatural causes, ancestral spirits, “enemies of progress” etc. By the end of this hypothetical thought process, I realized that I needed to apportion the blame to where it really belonged – Ignorance.

There’s a popular bible verse that says, my people perish due to ignorance (aka lack of knowledge) Hosea 4:6. The only way to overcome this is by increasing public awareness. Although autism awareness has improved in recent years in Africa, we still have a long way to go to ensure that children with autism in Africa are diagnosed early and given the necessary attention and care.

As we wrap up World’s autism day, I want to give a special shout out to all the fabulous autistic individuals out there striving to live their best life, and to all parents/guardians nurturing autistic children, I salute you!

By Ebere Sonoiki PhD
Ebere is a co-founder of The Truth Outreach and its subsidiaries which includes True Wellness International. She also serves as the director of public health operations. She was born and raised in Nigeria, where she completed her secondary school education before emigrating to the United States. She received her Bachelors in Science, with honors, in Molecular and Cellular Biology at the University of California Davis. She completed her PhD in Infectious Disease and Immunity at the University of California Berkeley in May 2014 where she led a large multidisciplinary team of scientists on multiple malaria drug discovery projects.

Kwali Settlements Survey

Kwali Settlements Survey

Our initial contact with Kwali local government was our response to an article in Leadership newspaper online about settlements in its jurisdiction in dire need of water, back in June 2015. During the project that resulted from this plea, Adadu WASH, the people of the settlement communicated several of their daily challenges. Most notable is the poor access to health facilities which meant that most of their pregnant women have their babies at home.

In January 2016, we decided to look further into this feedback by deploying a survey in the settlements. We found that 9 in 10 mothers had their last deliveries at home under the supervision of untrained and unequipped traditional birth attendants; leading to 1 in 4 newborn deaths. We also found out that, the distance to delivery facilities and the misperception that only weak women seek non-traditional help during childbirth deter pregnant women in these settlements from delivering their babies in health facilities.

Some of the other findings are:
● 33% of the people surveyed have radios
● 0% of the people surveyed have electricity in their homes
● 0% of the people surveyed have television in their homes
● 77% of the people surveyed have mobile phones
● 72% of the people surveyed can read in a language
● 67% of the people surveyed are farmers
● 23% of the people surveyed are herdsmen
● 43% of the people surveyed have primary school education
● 32% of the people surveyed have secondary (high) school education
● 7% of the people surveyed have higher (tertiary?) school education
● 30% of the people surveyed make use of the clinic
● 25% of the people surveyed do not go to the clinic because it is too far

A direct result of this survey is The Happy Birthday Project designed by True Wellness to leverage key features of this community, and address the behavioural and service delivery challenges.