The Expression, Recognition and Reporting of Autism Symptoms in the Ethiopian Context

Background: To improve detection of autism worldwide a better understanding is needed of the cultural-specific expression of autism symptoms and the cultural-specific ways of recognising and reporting autism symptoms. A good understanding of these factors is essential for establishing a valid screening tool for use in low-income countries like Ethiopia, where autism is underdiagnosed.

Objectives: To explore the cultural-specific expression, recognition and reporting of autism symptoms in Ethiopia.

Methods: Audiotaped semi-structured interviews were conducted with 16 caregivers of children with autism, recruited through Yekatit 12 hospital’s child mental health clinic in Addis Ababa, and with 8 local clinical professionals with autism experience. Informants were asked to describe the child’s strengths and difficulties, and the main areas of concern for the caregiver. Probes included autism characteristics listed in international diagnostic criteria. Data were analysed using framework analysis.

Results: Most caregivers identified strengths of their children (‘He is so sweet… It is the kid you most like to live with’) and appreciated the opportunity to describe strengths alongside problems. Clinicians and caregivers both provided examples of all main diagnostic symptoms of autism. Informants described impaired social relationships, ranging from the child preferring to be alone to having difficulty making friends. Problems with social communication were prominent: most caregivers indicated they have difficulty understanding what their child wants or needs. Restricted repetitive behaviours and activities were reported too, including repetitive play (e.g. splitting grass), sensory sensitivity (e.g. disturbed by loud noises or strong odours), insistence on sameness (e.g. wearing the same clothes; dislike of new foods) and motor stereotypies (e.g. hand flapping or head movements). Both caregivers and clinicians most frequently mentioned lack of speech as the cause of first concern. When asked which characteristics were most challenging, the majority of caregivers raised the child’s inability to communicate, but several also mentioned severe behavioural problems or lack of self-help skills, especially toilet problems. While caregivers could easily describe their primary concerns, there was also evidence of lack of awareness of some core symptoms. One caregiver commented: ‘I only start thinking about this thing [non-verbal communication problems] now that you raised it. We never see him showing us signs for what he agrees or disagrees with. We never thought of that.’ Moreover, several interview comments suggested that symptom reporting may be affected by beliefs, especially the common belief that autism is due to the child being spoilt.

Conclusions: In this exploratory study from Ethiopia, there was no indication that the expression of core autism symptoms differs markedly from what is reported in Western countries. However, due to local belief systems, cultural norms and low levels of awareness it is likely that some core symptoms would be missed when using a standard Western autism screening tool. In a context of low awareness a broad question about e.g. toilet problems may hold high predictive power even when screening for a specific condition like autism. The findings of this study suggest that in order to avoid low sensitivity, existing caregiver-reported screening tools will require careful cultural adaptation.