I am Brigitte Kobenan, founder of the Autism Community of Africa and a mother of a child with autism. I was born in Cote d’Ivoire (Ivory Coast) and moved to the United States over a decade ago to pursue my studies in finance.  I worked as a Business Development Officer and Financial Advisor for several years at a local bank in Washington, DC.

In 2004, my first child, Vinny was diagnosed with an autism spectrum disorder. Since that time, my husband and I have been fighting the uphill battle faced by every family with a child with autism. Despite a stable and well-established life in the DC region, we decided to move the family to Phoenix, Arizona as we were told to find better treatment options for autism. In Arizona, my son received the appropriate treatment for his condition, which helped him improve and live a better life. Although some challenges still remain for Vinny, his tremendous improvement has inspired me to share my experience with other families.

Back in Maryland in 2008, I founded the not-for-profit organization, Autism Community of Africa (ACA), to create a platform to share my experience and help African families in need by providing information and resources.

With the objective to make the voices of children with autism heard around the world, I decided to run for the Mrs. World 2008 pageant in Kaliningrad, Russia and used autism as my platform. I represented my native country Cote d’Ivoire (Ivory Coast), and was elected “Mrs. Congeniality World 2008” on June 29, 2008. This title has given me the opportunity to speak around the world about autism awareness in Africa.

 In 2007, after being invited on Voice of America (VOA) Television to talk about autism in Africa, I was contacted by a young lady from Nigeria. She asked for help because she was convinced that her brother had autism after hearing me talk about the symptoms of autism on the show. She was most alarmed by the treatment that he was receiving. He was tied to a tree and beaten with a stick to “chase the evil out of him!” A lady from Côte d’Ivoire contacted me because her sister was on the verge of depression. Her niece had a severe case of autism but had no help. With the cultural stigma labeling her daughter as a bad omen, and the constant challenge and lack of sleep from raising her daughter, the mother ended up in a mental institution.

We can say with caution that over the years, a great deal of awareness has been raised in Africa and around the world for diseases such as HIV/AIDS, malaria, and malnutrition compared to autism. A Minister of Health in an African country – which I will not name for privacy reasons- once asked me, “What is autism anyway? Why don’t you do malaria? Everybody knows malaria.” My point exactly! Everybody knows malaria!

Not to minimize these issues in anyway, but what do we do after children are feeling better from malaria, have recovered from malnutrition, or have received treatment for AIDS, but still have autism?

In Africa, children with autism are a burden to most families and societies due to the lack of awareness, education, and proper treatment. Individuals with autism need to be given the necessary tools to care for themselves. Autism can be treated.

Autism in Cote d’Ivoire

It is estimated that 30,000 people in Cote d’Ivoire suffer from autism and related disorders. Most of the children are under 15 years of age. But it is hard to be sure of the numbers because there is a lack of sufficient data in Africa.

Autism spectrum disorder is particularly heartbreaking in Cote d’Ivoire, where many people do not know what it is or how to help. In Cote d’Ivoire, like in many countries in Africa, a child with autism is associated with being evil. The mother is blamed as having done something bad that led her to be punished with a child with a “bad spirit,” so the child is mistreated, abused, hidden or beaten, because parents think that the child deserves to be treated that way. That’s how “evil” is dealt with.

Furthermore, poverty is a significant factor with autistic families in Cote d’Ivoire. Parents believe that there are far more “important and urgent” matters, like finding daily meals, than “wasting time on an evil child.” Most of the time, families are not educated. They have no access to the internet or any other major source of information besides the local media. Most of the children helped by ACA live below Cote d’Ivoire’s poverty line.

To date, ACA has instituted an autism awareness campaign to bring attention to the problems of autism in Cote d’Ivoire and elsewhere in Africa, but there is more to be done. Presently, ACA has a working partnership with the Yopougon Center for Children with Mental Disabilities. We are working with about 150 children with mental disability in Yopougon, a town in Cote d’Ivoire. This particular center is merely a “daycare center” where parents “just drop-off” their kids for the day. The small staff is overwhelmed as they do not have the resources to properly care for these children so they just “make do”. There are still more children with autism in the community, but they are not yet involved or are on the waiting list.

To better meet the needs of families dealing with autism in Cote d’Ivoire, a pilot center is needed in Abidjan, with a longer-term goal of opening a larger center that can do more, including research. The majority of families served will come from the immediate community and surrounding areas. Having a local source of information is extremely vital, because the information will be at the educational level of the families served and recognize the cultural/societal beliefs of the families. Outreach workers and volunteers will also take information to the families and villages, as they know where to go locally. The center will be marketed through those efforts, as well as word of mouth, the media, and an awareness campaign. Abidjan is on the south-east coast of the Gulf of Guinea and is the economic and former official capital of Cote d’Ivoire. Abidjan is the largest city and main port in the nation and in 2006 had 5,068,858 residents in the metropolitan area and 3,796,677 residents in the municipality.

Throughout my work and experience with ACA, I had the opportunity to meet families and children with autism as well as decision-makers in the United States and around the world. One of the main obstacles I observed with regards to the African continent is the lack of political will. For any program to be successful, leadership and ownership is required amongst other things. But the majority of the leaders and stakeholders on the local level in Africa are either misinformed or not interested in the subject. This is an indication of the need for a strong awareness campaign. If a Minister of Health did not know what autism was, imagine the level of autism awareness and knowledge amongst the general population.

In the past, often families and stakeholders concerned with addressing issues related to autism in remote rural locations could not afford transportation costs to attend conferences in the capital of a country. Now with the latest technology available in teleconferencing and mobile health (mHealth) they can either just go to their local health clinic to view these conferences on a large screen or receive autism training information via cell phone technology.  Imagine living in conflict and poverty, not knowing when and where your next meal would be coming from. Then try to imagine at the same time being a parent of a child with severe autism and try to grasp what that combined experience must feel like. We need to provide them with a lifeline of training and assistance. Now we can!

The Autism Community of Africa, along with the Foundation for Autism Support and Training and its collaborators (Center for Autism Support and Training, Pacific Institute for Research and Evaluation, Foundation for Africans with Disabilities and Neglect, Liberia Renaissance Foundation, and World Autism Foundation) are now providing a way forward to assess autism capacity in any country, whether advanced or developing.

Together, we are able to provide (with appropriate language translations and cultural considerations):

• Convening an initial stakeholder capacity assessment meeting
• Effective, user-friendly  autism trainings (train the trainer) for parents, family members, and caregivers
• Epidemiological studies
• Public information campaigns
• Education and disabilities policy development
• Technical assistance on diagnosis, early intervention, provision of direct therapeutic and rehabilitative services, employment and housing
• Technical assistance to expand technological platforms to provide autism training to families and professionals worldwide, even in remote locations.
• Program evaluation
• Lifespan planning
• Working to increase technology infrastructure to bring mHealth to the autism population in the developing and least-developed world.

Brigitte Kobenan
Founder, Executive Director
Autism Community of Africa
Mrs. Congeniality World 2008
Mrs. Cote d’Ivoire 2008
2012     

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The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.