Providing early detection and early intervention for autism spectrum disorder in South Africa: stakeholder perspectives from the Western Cape province

Abstract

We set out to examine key stakeholder perspectives on early detection and intervention for autism spectrum disorder (ASD) in South Africa. Early detection and intervention improves child and family outcomes and lessens long-term costs. We focused on stakeholders in the Western Cape province, one of the better-resourced in terms of healthcare. Eight senior management level stakeholders, two each from government’s Health, Education, and Social Development, and the non-profit sector were identified using purposive sampling. In-depth interviews focused on key implementation-related themes. The National Integrated Early Childhood Development Policy was the most relevant to early detection and intervention. This policy, however, is not ASD specific. This lack of specificity is in keeping with an emerging theme: ASD was only seen within the context of other developmental disabilities, particularly by Health and Social Development. Specific ASD early detection and intervention may not currently align with Health and Social Development departmental goals. These departments are primarily responsible for identifying and providing services and financial support to young children with ASD. Increased ASD knowledge and local South African statistics on prevalence, burden and associated costs may alter this approach. At this time, ASD early intervention may be more closely aligned with Education department goals.

Caregiver descriptions of joint activity routines with young children with autism spectrum disorder in South Africa

“…The Western Cape Province is relatively well-resourced in terms of healthcare (43,44). Despite this, access to ASD diagnostic and intervention services is extremely limited (4). In 2016 the Western Cape Education Department Provincial ASD waiting list for special school placement included the names of 940 children, 646 of whom were younger than seven years of age (45).…”

“…South Africa, which has a population of over 50 million, has nine ASD-specific schools, the majority of which do not provide early ASD intervention services or support, given that mandatory school entry age is seven years. The majority of families of young children with ASD are seen in the public health care sector, once every 4–6 weeks by either an occupational or speech therapist for a 30-minute session (4,46).…”

“…Additionally, there are few publications on ASD intervention on the African continent (3). Furthermore, few policies and systems of care exist to provide early detection and intervention for ASD in sub-Saharan Africa, where the number of children with developmental challenges has increased by 70% over the past three decades (2,4).…”

Sustainable implementation of early intervention for autism spectrum disorder through caregiver coaching: South African perspectives on barriers and facilitators

“…Despite South Africa being an upper middle income country (24), it has the highest GINI coefficient making it the world’s most unequal country (25). The needs of the vast majority of the population requiring early ASD intervention go unmet (23,26). This is true across the country, including in the Western Cape Province which is thought of as one of the better-resourced in terms of healthcare and education (26,27).…”

“…The needs of the vast majority of the population requiring early ASD intervention go unmet (23,26). This is true across the country, including in the Western Cape Province which is thought of as one of the better-resourced in terms of healthcare and education (26,27). This is due to a combination of factors, including: (I) limited ASD government services, for example, there are nine government funded ASD schools in South Africa for a population of over 52 million people; (II) most people live in poverty.…”