A Collaborative Community Awareness Screening Program on Autism in Lagos Nigeria: Lessons Learnt

Background:  Community-based with need-tailored care has been pointed out as the preferred approach for children with neurodevelopmental disorders (CNDs) such as autism. Paucity of data on specific diagnoses, pattern of mental impairment and psychosocial needs in CNDs is a major constraint for development of policy and evidence based intervention programs in developing countries. Collaboration is needed among all sectors of any community in improving awareness and ensuring service development

Objectives:  To illustrate a collaborative effort between Guaranty Trust Bank (GTBank) Lagos, the College of Medicine University of Lagos (CMUL) and a non profit group from the USA,Blazing Trail International Centre, aimed at creating community awareness and ascertaining the diagnosis of autistic spectrum disorders in Lagos, Nigeria

Methods: Data was obtained during the 2014 annual 2 week GTBank / CMUL autism awareness program in partnership with Blazing TrailS, USA. All participants that attended the one-week consultation part of the program were enrolled into the study following their informed consent and that of their caregivers. Questionnaire-based assessments were done to collect relevant data on socio-demographic, clinical and psychosocial need parameters. In addition, screening with the MCHAT and CAST were carried out, and then a clinical evaluation using the DSM-V criteria was done. Data analyses were done using SPSS-18

Results:  A total of 95 participants, aged between 2- 28 years. Mean age of participants was 9.14 years (sd+/-6.2). Though majority were aged between 3-10 years being 57 (58.6%) in number. All were accompanied by their parents. While 78 (82.1%) were currently attending school, with 33(41.8%) in special schools and 45 (47.4%) attending normal schools. After an initial screening with the MCHAT and CAST, and a clinical evaluation using the DSM V criteria, 30 (31.7%) of the participants met the diagnosis of autistic spectrum disorder. Among those diagnosed with autism, 24 (80%) were male while 6 (20%) were female. Nine (42.9%) of which were first born children. Majority, 19(65.5%) were aged between 3-10 years. Most of them 17(70.8%) were attending regular schools, while 6(25.0%) were attending special schools. Seven (24.1%) had participated in the Gtb-CMUL autism consultation program in the past, while others were attending for the first time. The three main health concerns as elaborated by the parents during the consultation were poor language development in all of the children with autism (100%), out of which 11(40.7%) were completely non verbal; gaze avoidance in 14(46.7%) and challenging behaviour in 12 (41.4%). Comorbid seizure problems were reported in 5 (19.2%) and attention deficit hyperactivity in 2 (6.7%). Further clinical evaluation of areas of need provided direction for caregivers to the few scattered services within the community.

Conclusions:  There is need for large scale screening of children with developmental disorders in developing countries to clearly determine diagnosis.  Such innovative collaborative effort between financial, nonprofits and academia can be successful in providing awareness and improving diagnosis in resource poor settings. Parents of Children with autism must be encouraged to engage in services and should be guided based on need to available service options in their immediate communities.