Challenges and opportunities to improve autism services in low-income countries: lessons from a situational analysis in Ethiopia

Abstract

Background.Little has been reported about service provision for children with autism in low-income countries. This study explored the current service provision for children with autism and their families in Ethiopia, the existing challenges and urgent needs, and stakeholders’ views on the best approaches to further develop services.Methods.A situational analysis was conducted based on (i) qualitative interviews with existing service providers; (ii) consultation with a wider group of stakeholders through two stakeholder workshops; and (iii) information available in the public domain. Findings were triangulated where possible.Results.Existing diagnostic and educational services for children with autism are scarce and largely confined to Ethiopia's capital city, with little provision in rural areas. Families of children with autism experience practical and psychosocial challenges, including severe stigma. Informants further raised the lack of culturally and contextually appropriate autism instruments as an important problem to be addressed. The study informants and local stakeholders provided several approaches for future service provision expansion, including service decentralisation, mental health training and awareness raising initiatives.Conclusions.Services for children with autism in Ethiopia are extremely limited; appropriate care for these children is further impeded by stigma and lack of awareness. Ethiopia's plans to scale up mental healthcare integrated into primary care provide an opportunity to expand services for children with autism and other developmental disorders. These plans, together with the additional strategies outlined in this paper can help to address the current service provision gaps and may also inform service enhancement approaches in other low-income countries.

A Conceptual Framework for Understanding the Cultural and Contextual Factors on Autism Across the Globe

“…Although the conceptual framework has specifically been developed for application in LMIC, it will have relevance too in culturally diverse settings in high-income countries. To illustrate, a study amongst a Somali population living in the UK (Fox, Aabe, Turner, Redwood, & Rai, 2016) reported findings that echo reports from populations resident in the horn or East of Africa (Gona et al, 2016;Tekola et al, 2016;Tilahun et al, 2016) regarding the perceptions of autism, experiences of stigma and unmet needs. Ethnic minority groups in high-income countries tend to be under-diagnosed for ASD and under-represented in autism research populations (Decoteau, 2017;Kawa et al, 2016;Sandy Magaña & Vanegas, 2017).…”

“…Lack of diagnostic and intervention materials or instruments; poor quality or lack of experience of practicing clinicians; and long wait times for access to services have also been identified as barriers to receiving support (Durkin et al, 2015;Peters et al, 2008;Reardon et al, 2017). In Africa in particular, a shortage of basic knowledge about ASD amongst health professionals has been reported (Bakare & Munir, 2011;Eseigbe et al, 2015;Mitchell & Holdt, 2014;Ruparelia et al, 2016;Tekola et al, 2016;WHO, 2013), as well as a lack of appropriate diagnostic and screening tools (Abubakar, Ssewanyana, de Vries, et al, 2016;Ruparelia et al, 2016;Tekola et al, 2016). Moreover, lack of consistently implemented developmental monitoring in the health system contributes to developmental delays being missed or identified late (Engle et al, 2011).…”

“…Affiliate stigma can cause caregivers in various cultural settings to keep the child secret from the community. These caregivers hide the child's existence, keep the child at home, or send the child away to extended family living in more remote areas of the country (Hadidi & Khateeb, 2015;Tait et al, 2016;Tekola et al, 2016;Tilahun et al, 2016). This in turn may negatively influence the help-seeking behaviour and the awareness of ASD in these settings.…”

Adapting and pre-testing the World Health Organization’s Caregiver Skills Training programme for autism and other developmental disorders in a very low-resource setting: Findings from Ethiopia

“…working in the country and 20 clinical psychologists, none of whom are specialised in child mental health. Services for children with DD are mainly restricted to the country's capital city, Addis Ababa, and are therefore inaccessible to the majority (85%) of the population living in rural areas (Tekola et al, 2016;Zeleke, Hughes, & Chitiyo, 2018).…”

Sociocultural Perspective on Autism Intervention

“…In Ethiopia, many individuals believed that children who have autism were possessed by the devil due to their parent's sins and attribute largely to supernatural explanations as the cause of autism, and the families live with high levels of stigma [17]. However, nowadays, there are growing global health initiatives to enhance understanding for autism and its symptoms and to stimulate greater acceptance of those who are diagnosed with ASD by their community [18].…”