The Experiences of Families Raising an Autistic Child: A Rapid Review

Abstract

Background: Autism is becoming more prominent in South Africa and in the rest of the world. A family raising an autistic child plays a key role in the treatment and lifelong management. This responsibility goes with demanding challenges, which are unique to every child and situation. A deeper understanding of the psychosocial experiences and impact of autism and its symptoms on the involved families is ultimately essential in the development of relevant and scientifically based interventions and support programmes. Objectives: The aim of this review was to conduct a rapid review to explore, synthesise, and integrate existing scientific literature on the pre- and post-diagnostic psychosocial experiences of families that raise an autistic child. Methods: A comprehensive and systematic keywords search were conducted, and 142 relevant studies were found. These studies were then screened for relevance with regard to inclusion and exclusion criteria. Nine articles, published between 2008 and 2018, were identified for final inclusion in the study. Data were analysed using a thematic synthesis approach. Results: The thematic synthesis revealed three main themes and ten sub-themes that were anchored on families’ psychosocial experiences of raising an autistic child, both pre- and post-diagnosis. The themes include psychological experiences (emotions experienced, grieving process, parenting, and family dynamics), social experiences (lack of support services, and social awareness), and psychosocial coping strategies (isolation, information seeking, meaning-making, and support system). Conclusion: The analyses and synthesis of the identified articles indicated that the identified psychosocial experiences of families raising an autistic child were multidimensional and fit well within a contextual and systemic perspective. The family quality of life (FQOL) framework provides a positive approach that seeks to improve and optimise the quality of life of families that raise a child with a disability. It is recommended that families need to be informed of services available for autism and psychosocially supported so that they feel empowered to deal with the challenges at hand.