Being a Parent of a Child with Autism and/or Developmental Delay in Urban Ethiopia: Their Experience of Stigma, Perceived Autism Causes, Needs and Coping Strategies

Background: Ethiopia is a low-income African country of 84 million people with limited health care facilities. The prevalence of autism in Ethiopia is unknown, but prevalence studies of general mental health problems and intellectual disabilities in other low-income countries suggest that these problems are at least as prevalent as in high-income countries [WHO, 2008]. There are only two trained child psychiatrists in Ethiopia and specialized child mental health clinics are limited to the capital Addis Ababa. The detection of, and appropriate care for, children with autism is further impeded by stigma and misconceptions of the causes of developmental disability and mental health problems. This project constitutes the first study of the experience of parents of a child with autism and/or developmental delay in Ethiopia.

Objectives: To examine 1) the level of stigma experienced by families with a child with autism/developmental delay; 2) the explanatory models of parents about their child’s condition;  3) what kinds of intervention parents have used and perceive are most needed; 4) the coping strategies used by the families.

Methods: Parents of consecutive attendees to the Yekatit 12 child psychiatric out-patient unit and the St Paul’s clinic, Addis Ababa, who are diagnosed with autism and/or intellectual disability, are invited to take part. In a face-to-face structured interview, parents are asked questions on their social demographic background, their experience of stigma in the community (using an adapted version of the Family Interview Schedule), the perceived causes of their child’s condition, the types of interventions they have tried and perceive are needed, and their coping mechanisms.

Results: Preliminary data collection and analyses suggest that parents with a child with autism/developmental delay experience some level of stigma in the community. All parents indicated they often need to explain to others that their child isn’t like their picture of “crazy people”, some parents experience embarrassment of their child’s condition, but most parents do not try to hide their child’s condition from others. Parents cited a mix of biological (e.g. meningitis infection or obstetric complications) and religious or supernatural factors as causes for their child’s condition. Most families had tried both religious (e.g. attending the holy water, church or mosque) and medical treatment for their child. Some parents also beat or chained their child to attempt improving their difficulties. Parents expressed that adequate schooling and support for their child were most needed. Most families talked to family, friends and professionals, and engaged in prayer to cope with their child’s difficulties.

Conclusions: This study highlights the stigma experienced by Ethiopian families living with a child with autism/developmental delay and their unmet needs. It is important to note that this study was conducted in parents of a child with a formal diagnosis, i.e. in families who had found their way to the clinic in the capital. The levels of stigma and unmet needs are likely to be higher in rural Ethiopia, and in families of children with similar problems who remain undiagnosed. A larger data collection including families living in rural Ethiopia is planned.