Assessing prevalence and building awareness of Autism Spectrum Disorders (ASDs) in Mali

Summary

Autism Spectrum Disorders (ASDs) affect 1-2% of people in the world but, in Africa, it is still unclear exactly how many people they affect. In Mali, the prevalence of ASDs has yet to be fully determined, largely due to misconceptions and stigma that influence families to hide children living with these conditions or lead them to pursue informal traditional ‘healing’ systems. This study helped to identify factors that were a barrier to seeking diagnosis and treatment of these children, leading to the late age for the first medical visit.

Background

Autism Spectrum Disorders affect 1-2% of the world’s population, and 1 in 54 children in the U.S. Their prevalence remains unknown in Africa. This study found that 1 in 27 children (4.5%) that reported to the Department of Psychiatry of the Hôpital du Point G in Bamako, Mali were affected by ASDs. This is believed to significantly underrepresent the true burden of ASDs in Mali.

In Mali, autistic children used to be hidden in their homes in both rural and urban settings. Traditional Medical Practitioners (TMPs) were the first line of ASDs diagnosis and treatment; often TMP assessments and advice was marked by misinterpretation and stigma. For example, the presence of ASDs might be blamed on the mother’s infidelity, or an affluent parent of an autistic child may be told they sacrificed the wellbeing of their own child for their wealth. The influence of TMPs is reinforced by the absence of training in ASDs for medics in Mali. This ignorance also extends to the general population. For example, dozens of Malian families have travelled elsewhere in Africa or even Europe or the US to evaluate their child for deafness because they had no awareness that the cause of a language deficit could have been autism.

It is important, therefore, to address these challenges through stakeholder engagement strategies directed at training health workers in ASD management and encouraging the Malian public to seek proper medical diagnosis and case management, while disabusing harmful sociocultural conceptions of ASD. This study served as a starting point for estimating the prevalence of ASDs in Mali.  

Study description

To understand the impact of ASDs on the health and wellbeing of children in Mali, the prevalence of the disorders must be established. The study used as an estimation basis a sample mapping of the incidence of ASDs in patients at the paediatric psychiatric unit of Hôpital du Point G, a major hospital in Bamako. Researchers reviewed more than 12,000 medical charts to determine which patients exhibited known traits of autism. To understand the genetic risk factors for ASDs in Mali, the study recruited 116 autistic children in family groups of four with 29 families in total: the proband (i.e., the child with autism), the father, the mother and the healthy sibling of the proband. Participants were tested genetically using whole exome sequencing (WES). Samples taken from 29 families with autistic members are now being tested in Doha, Qatar, for information that will help identify the genetic variations related to autism-specific to Malian populations.

The study also sought to develop strategies for training healthcare professionals across the country on ASDs and how to implement a stepped-care model for ASD management. A seminar series was instituted in collaboration with the Regional Directorate of Health in Bamako, with 12 autism awareness seminars completed over three years. These covered autism screening and diagnostics, tools for autism management, and some principles of special education for autistic children. Additional seminars were organised for other audiences, including TMPs, journalists, physicians-in-chief, members of the Health Committee at the National House of Representatives, medical residents and senior medical students.

Study outcomes

• The study found a prevalence of health facility based ASDs of 4.5%, with the mean age of first medical visit for autistic children in Mali of 7-8 years
• The study helped to validate parent-reported autism screening questionnaires (M-CHAT-R and SCQ) in Mali
• As part of the study, medical treatment was provided for children with ASDs and/or epilepsy from all over the country.
• Genomic DNA and plasma from children with ASDs and epilepsy was stored for future studies and collaborations.

Lessons

Regional research programmes in Africa should fund such work to promote African-led research in Africa for the benefit of Africans. The WACCBIP DELTAS Fellowship has built a firm foundation for research careers, which has led to national recognition for successful awareness strategies for ASDs.

Public engagement is a necessary part of research, particularly for socially misunderstood conditions such as autism. A large aspect of the success of this study was a result of targeted public engagement.

Impact

The study helped to identify factors that were a barrier to seeking diagnosis and treatment of these children, leading to the late age for first medical visit.

170 physicians were trained in autism diagnosis and treatment in Bamako. Parents of autistic children organised a national association known as “Djiguiya”, which attracted the support of a former first lady of Mali in the form of 8,000 m2 of land in Bamako donated for the future construction of an autism centre. Such a centre is being discussed in collaboration with a French-Malian collaborator and a team of specialized educators from Quebec, Canada.

The successful awareness campaign also led the Office of the President of Mali to direct the Ministry of Higher Education and Scientific Research to model an HIV awareness campaign on the ASD campaign. The ASD campaign also reinforces the value of public awareness for AIDS directed to other high-risk populations (prostitutes, homosexuals, taxi drivers, high school pupils, military, gold miners) through dedicated interest group associations to promote a higher adherence to HIV screening and antiretroviral use.

About Modibo Sangare

Modibo Sangare is a Malian neuroscientist and an associate professor at the University of Sciences, Techniques and Technologies of Bamako, Mali. His research interest is in autism. He completed his postdoctoral training with the West African Centre for Cell Biology of Infectious Pathogens (WACCBIP). WACCBIP is one of the eleven Developing Excellence, Leadership and Training in Science in Africa (DELTAS Africa) programmes which fund Africa-based scientists to build world-class research and scientific leadership on the continent while strengthening African institutions. It is implemented through the Alliance for Accelerating Excellence in Science in Africa (AESA), a funding, agenda-setting, programme management initiative founded by the African Academy of Sciences (AAS), the African Union Development Agency (AUDA-NEPAD), founding and funding global partners, and through a resolution of the African Union Heads of Governments. DELTAS Africa is supported by Wellcome and the UK Foreign, Commonwealth and Development Office (FCDO, formerly DFID).