ASD Service Delivery in South Africa

Background:

The availability of Autism Spectrum Disorder (ASD) services in low-middle income countries (LAMICs) is poorly documented. Typically, research has focused on high-income countries (HICs) from the global north with a lack of research focusing on LAMICs, like South Africa. This situation is problematic given the likelihood that individuals in LAMICs might, for instance, face comparatively heavy socioeconomic burdens, and that healthcare systems in those countries might bear comparatively heavy burdens of disease. Thus, data from HICs regarding service delivery and quality of life in ASD may not be useful in the LAMIC context. Within South Africa, as in much of Africa, there is no published research concerning service delivery. The lack of service delivery data makes identifying the shortfalls of the services challenging, and hinders calls for improved ASD care in South Africa.

Objectives:

This study addressed the paucity of information on care pathways in LAMICs by examining parents’ perspectives of ASD service delivery adequacy and availability.

Methods:

We recruited two hundred parents of ASD children and adults, from various sociodemographic and cultural backgrounds from three different provinces within South Africa. A detailed service delivery questionnaire was administered with each parent. Additionally, six parent focus groups were held to obtain in-depth perspectives on service delivery obstacles and strengths. Various areas of service delivery were examined, including the diagnostic process, current health care, access to and quality of education, and the impact of the ASD diagnosis on the family.

Results:

The majority of children were typically diagnosed later (i.e., after 2 years old) than the age parents first noticed behavioural and developmental difficulties (age = 26 months). Overall, most of the children were diagnosed before 6 years old. Furthermore, some families had to consult multiple professionals before receiving a diagnosis, with most of the families reporting that ASD was not mentioned at their first consultation with the professional. However, most of the parents reported receiving referrals to various services while waiting for the diagnostic assessment. A range of different therapies/interventions were utilised, with speech therapy being the most common. School attendance was predominantly in autism-specific schools, followed by public special needs schools. Furthermore, most parents reported that their child does not receive interventions or any form of therapy at their school. Additionally, most parents reported a lack of, and in turn a need for, community-funded therapies, community organisations, and career and employment assistance for autistic adults. Families reported that their child’s ASD diagnosis negatively impacted their financial situation and for some their ability to maintain employment. Additionally, only 28% of parents reported receiving government assistance. Other challenges included services being expensive and far from the parent’s home, as well as long waiting lists for services.

Conclusions:

This study provides key information regarding the limitations of the services provided to individuals with ASD and their families within a LAMIC context. It highlights the need for better integration of services, earlier identification and treatment of ASD in South Africa, and greater financial, social and educational support for families.