‘A blender without the lid on’: Mealtime experiences of caregivers with a child with autism spectrum disorder in South Africa

Abstract

Background: Evidence suggests that caregivers of children with autism spectrum disorder (ASD) and associated feeding difficulties have specific mealtime challenges in the home environment because of the limited interventions that are appropriate and responsive to the needs of the child as well as the family.Objectives: To describe: (1) common feeding difficulties in children with ASD, (2) mealtime challenges for the caregiver and (3) mealtime strategies used by the caregiver.Method: Forty caregivers were purposively sampled to participate in the study. Participants were recruited through ASD-specific schools in Johannesburg, South Africa. Participants completed an online questionnaire focusing on their mealtime experiences with their child with ASD.Results: Findings from the data after thematic analysis indicated the multitude of challenges caregivers have when feeding their child with ASD as well as their individualised way of dealing with these difficulties.Conclusion: The findings emphasised the importance of incorporating the family’s beliefs, values and needs into feeding management and highlight the importance of a holistic approach to intervention. The study also provided information about mealtime strategies that are being used in the home environment to support the child as well as the caregiver. This information can be used to inform management to improve therapeutic outcomes and feeding challenges in the home environment.

Feeding children with autism in South Africa: The teachers’ perspectives

“…When targeting feeding, teachers did not rely on one approach but used a combination to address either food-related behaviours or behavioural problems, with some of the strategies overlapping and addressing mealtime behaviours. Strategies used by the teachers were similar to those reported by caregivers (Adams et al 2020 ; Ausderau et al 2019 ; Farag et al 2022 ). However, how teachers implemented the different strategies were slightly different as teachers were required to focus on more than one child during mealtimes.…”

“…However, it is essential to consider food choices and the financial implications of fast food options in South Africa. Previous research has highlighted the increased costs of fast foods for parents of children with autism, who provide such options just to ensure their child eats (Adams et al 2020 ).…”

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

“…The stigma associated with autism, as expressed through judgments, rejection, isolation, and discrimination, originates predominantly from the community and society, and is to the detriment of the well‐being of both the child and the family (Turnock et al, 2022). These instances of stigma are often attributed to the lack of knowledge and awareness regarding the causes of ASD (Adams et al, 2020; Ayinla 2019; Joshua et al, 2019; Khabanyane, 2020; Mbamba & Ndemole, 2021; Mshengu, 2019; Schlebusch & Dada, 2018; Ulofoshio, 2017). To misconstrue ASD as witchcraft, and labelling the child as being possessed by an evil spirit, further result in isolation and exclusion from gatherings, exacerbating negative societal attitudes (Alli et al, 2015; Bishop, 2012; Cole et al, 2017; Gona et al, 2016; Olivier & Ah Hing, 2009; Reddy et al, 2019; Sumbane, 2021; Swanepoel, 2003; Wortmann, 2011; Zeleke et al, 2018).…”

“…The diagnosis of ASD in their children and the accompanying uncertainties caused many psychological challenges for families namely, grief, confusion, anxiety, stress, frustration, and denial, as supported by the global findings of Makino et al (2021), Rfat et al (2023) and Demšar and Bakracevic (2023). Moreover, families often witnessed changes in family roles, routines, co-parenting dynamics (e.g., disturbed marital, sibling, and family relationships), and alterations in community and work settings (Adams et al, 2020;Glinski & Valjee, 2019;Matenge, 2013;Schlebusch & Dada, 2018). Other global studies, including those from Africa, indicated these challenges affecting women more than men resulting in maternal stress and mental instability when caring for their ASD children (Asmare et al, 2023;Benrween et al, 2022;Di Renzo et al, 2022;Hosseini et al, 2022;Li et al, 2022).…”

The Unmasking of Autism in South Africa and Nigeria

“…35 Studies have also explored the experiences of caregivers feeding their child with autism in South Africa. 36,37 Children with autism are more likely to experience food selectivity and problematic mealtime behaviours compared to their neurotypical peers. 38,39 These difficulties encompass picky eating, limited independent feeding, longer feeding times, and a restricted food repertoire.…”