Services for Children with Autism and Their Families in Ethiopia: Service Providers' Perspectives

Background: Knowledge about autism in general, and service provision to children with autism and their families in particular, is extremely limited in Africa; there are no previous studies on autism in the horn of Africa (Elsabbagh et al., 2012). In Ethiopia, the prevalence of autism is unknown, but prevalence studies of general mental health problems and intellectual disabilities indicate that these problems are at least as prevalent as in high-income countries (WHO, 2008).

Objectives: To describe the current service provision for children with autism and their families in Ethiopia in order to assist advocacy for improved services and to inform development of future service interventions.

Methods: Audiotaped semi-structured qualitative interviews were conducted with all 10 service providers (n=10) for children with autism and their families in Ethiopia. Data were analysed using thematic analysis.

Results: Services for children with autism and their families are centralised in the capital city. There are four types of service providers: 1) two psychiatric clinics in government-run hospitals and a private clinic, 2) two centres run by parents of children with autism, 3) one government and two private schools which have inclusive education programmes for children with autism and 4) two community-based organisations. Autism diagnoses, in the minority of cases where these are available, are made in the psychiatric clinics, based on a clinical interview and observation following DSM-IV criteria. There are no standardised diagnostic instruments. The scope of Ethiopian service providers tends to be broader than typically seen in high-income countries, with the parent-run centres and community-based organisations also providing some informal diagnoses. Access to centres run by parents of children with autism is mostly restricted to well-educated and more affluent families; these centres also have long waiting lists. There are no diagnostic or educational services in the rural areas, where 85% of the population lives. In these areas autism usually remains undetected because of limited health care, low levels of awareness and stigma. Autism type symptoms are often seen as a punishment for wrongdoing from supernatural forces. Several interviewees said that parents hide children with such problems away from the community. Children with autism and their families experience social exclusion and negative attitudes/judgements from others. Awareness about autism among the general public and health professionals has increased recently mainly thanks to the efforts of centres run by parents. In recent years, they have organised a mass walk, fundraising events and conferences; given media interviews; produced documentary films and wrote newspaper articles.

Conclusions: Although knowledge about autism has improved in recent years, autism in Ethiopia is still surrounded by lack of awareness and stigma. There is a severe lack of diagnostic and educational services for individuals with autism and their families; facilities are non-existent in rural areas. Apart from a need for increase in service provision there is a clear need for culturally and contextually appropriate autism diagnostic instruments.