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A 6-Year Trend Survey from a Childhood Autism Surveillance Program in Lagos, Nigeria
The increased need for research to determine the burden of Autism in Africa also draws attention to the need to address the service gap and related challenges in autism care in many African countries. Stakeholder Collaboration can play roles at varying levels, a strategy which may herald the discovery of sustainable solutions which will evolve to address this challenge.
Objectives:
The report aims to describe some of the findings, processes and strengths of a stakeholder driven, community surveillance program over a period of 6 years (2013 to 2018).
Methods:
Clinical evaluation sessions held over 4-5 day periods each year. The evaluations were conducted by a multidisciplinary team of volunteers from different agencies/sectors. Assessments were made based on the DSM 5 Criteria for Autism.
Results:
The collaborative team drawn from the private sector (GTBank & NGO’s), public sector and educational sector (University and other skilled volunteers) comprised multidisciplinary professionals committed to autism care. The 6-year experience had over 1050 attendees in total with varied neurodevelopmental disorders. Majorities were males with age range between 1 and 40 years
About a third were clearly not ASD (who were referred out) or had incomplete data. More than half proceeded for further evaluations each year being: 58, 94, 134, 101, 72 & 104 consecutively.
For Majority this consultation was their first contact with formal orthodox care. Repeat attendees were noted from 2014 to 2018. This ranged between 7 and 35%. Caregiver burden was clearly evident each year amongst caregivers.
Conclusions:
This program highlights that much can be achieved through team work. In the face of scarce resources, a collaborative effort is a useful strategy to ensuring service delivery in Africa where there are little or no ASD relevant services. Monitoring, evaluation and quality assurance processes need to be continually included and reviewed in such programs going forward.