Caregiver’s expectations of their non-verbal children who present with Autism Spectrum Disorder in rural KwaZulu-Natal.

Abstract

Caregiver expectations have been shown to have an effect on child outcomes. There is limited research regarding caregivers of individuals with non-verbal Autism Spectrum Disorder particularly in rural South Africa. The aim of this study was to explore caregivers’ expectations for their non-verbal child with Autism Spectrum Disorder in rural KwaZulu-Natal. Individuals with ASD form part of a larger environment, which they may influence and in turn impacts them. Caregivers form part of this environment. Bronfenbrenner’s ecological and bioecological systems theory framed the study and allowed these environments to be understood through implementing a qualitative study design. Eleven participants, who were caregivers of non-verbal children with ASD, aged from 5 to 7 were purposefully selected. Data were collected via semi-structured interviews and analysed thematically. Ten themes included caregivers, journey to diagnosis, feelings regarding diagnosis, caregivers understanding of ASD, caregivers’ experiences raising a child with ASD, communication, education, social participation and employment, therapy and societal responses. Caregivers had varied expectations of their non-verbal children with ASD. The microsystem was fluid and changed regularly with grandparents often being the primary caregivers. Relationships within the mesosystem (caregiver and therapists) impacted how caregivers understood the diagnosis, this in turn affected their feelings and expectations which also changed over time (chronosystem). Education was the predominant expectation for most caregivers, taking precedence over communication and social participation. However, limited resources within in the exosystem (limited schools) made viable schooling options difficult. Communication was less of a priority in comparison to education and toileting. There is need for caregiver counselling regarding non-verbal ASD in rural South Africa, a need for more (special) education options and caregiver support groups. No participant who had a child with ASD in the 8-18 year old age-range was a study limitation.