Families raising children attending autism-specific government-funded schools in South Africa

Abstract

Limited research is available about the financial costs incurred by families of children with ASD in low-andmiddle-income countries (LMICs). This article describes socio-demographic characteristics of and financial costs encountered by families whose children attend autism-specific government-funded schools in South Africa (SA). Survey questionnaires were completed by 234 caregivers (representing 28.4% of the caregivers involved in the six autism-specific schools around the country). The distribution of population group, nationality, household size, marital status, and average combined monthly household income closely reflect the national majority of families in SA. Families are living on a relatively low monthly household income and spending a significant amount on school fees, transportation, medical insurance payments, and extracurricular therapeutic services. Monthly social assistance government grants were accessed by 46.6% of families only and 57% do not own their own dwelling. Certain factors were associated with higher monthly income: higher qualification of the father and mother, school fees, medical insurance scheme payments and extracurricular therapy services. Key differences between our data and data from other LMICs are that our sample showed higher monthly household income, lower parental education, and more single mothers. LMICs families receive limited social assistance grants from governments. Country-specific research on families of children with ASD is needed.

A narrative review on the prevalence of autism in a South African context

“…Resiliency in caregiving becomes worn out when there are no adaptive coping mechanisms in place to replenish strength. Fatigue is defined as an overwhelming, persistent weakness and exhaustion that manifests mentally and physically [51,52] , which is not relieved by resting and can affect the daily function and cognition of an individual [53] . Moreover, mothers of children living with ASD reported significantly higher levels of fatigue associated with stress, anxiety, and depression symptoms [42] .…”

The Unmasking of Autism in South Africa and Nigeria

“… 30 Additionally, it is important to acknowledge the financial strain for many families in these contexts, particularly those form lower socioeconomic backgrounds and those living in remote or rural areas regarding the types of support required for these families. 57 , 58 Reduced support and access to services will continue to result in limited or inadequate treatment and increased caregiver burden. Research has also indicted the financial strain placed on families and their autistic children regarding access to services, resources and treatment.…”

Experiences of families with children diagnosed with Autism Spectrum Disorder in World Health Organization Afro‐Regions: A scoping review

“…In Africa, similarly, high expenses for diagnostic procedures, screening measures, treatment, and specialized education increase the burden on family caregivers (Eze, 2018). In Africa, limited available resources from government and non‐governmental organizations, as well as low monthly incomes for many families aggravate the situation (Erasmus et al, 2019; Guler et al, 2018). As a result, families may withdraw and endure silently (Kamau, 2017), while facing significant challenges including anxiety, isolation, stress, depression, and the burden on the family (Voulgarakis et al, 2023; Yaacob et al, 2021).…”