“Sometimes I Feel Grateful…”: Experiences of the Adolescent Siblings of Children with Autism Spectrum Disorder in Malaysia

Chu, Shin Ying; Kassim, Siti Nur Zafirah Binti; Gan, Chun Hong; Fierro, Veronica; Chan, Caryn Mei Hsien; Hersh, Deborah

doi:10.1007/s10803-021-05184-5

Cited by 7 publications

(2 citation statements)

References 55 publications

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“…Instead, almost all typically developing kids, regardless of their position in the family, work with their parents to manage, care for, and safeguard their ASD siblings together (Hanvey et al, 2022). However, some research has indicated positive findings regarding sibling relationships, adopted coping, and typically developing child psychosocial adjustment while growing up with ASD individuals, where maturity, empathy, a sense of responsibility, and higher tolerance exist in this typically developing child because their parents have exposed them to the ASD issue that their siblings have experienced since childhood (Chu et al, 2021;Gorgy et al, 2017;Costa and Pereira, 2019;Mahbot & Alias, 2022). Most respondents in Singh and colleagues' study (2021) acknowledge that it can be challenging to manage their ASD siblings' behaviour and deal with difficulties, but they also concur that they grow to be more appreciative, independent, and grateful.…”

Section: Introductionmentioning

confidence: 99%

Psychosocial Adjustment Strategies among Typically Developing Adolescents of Siblings with Autism Spectrum Disorder

Mas'ut¹,

Ali²

2023

IJARBSS

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A neurodevelopmental disability known as Autism Spectrum Disorder (ASD) is characterised by complex neurological symptoms involving the structure and function of the individual's brain and nervous system. Since ASD in an individual lasts throughout life, it is not surprising that living with an ASD individual presents unique challenges not only to the parents but also to the siblings of the ASD individual himself, where it can leave a great impact on the typically developing individual's functioning, psychological, educational and social, or in the family economy from the beginning of the process of obtaining a diagnosis until the ASD individual steps into adulthood. Previous research findings on the experiences and perspectives of typically developing siblings growing up with individuals with ASD have been mixed. Thus, a qualitative approach with a case study design was used to explore the psychosocial adjustment strategies taken by typically developing adolescents when dealing with ASD siblings. Six participants who matched the study's criteria and were recruited through snowball and purposive sampling had semi-structured interviews with an average duration of 30 minutes. The results of semi-structured interviews were analysed using thematic analysis. Two main themes that emerged are active coping strategy and passive coping strategy. Typically developing adolescents are observed to employ both types of coping strategies depending on the situation. The results of this study offer valuable insights into how society and medical professionals can support the psychosocial development of typical adolescents who have siblings with ASD.

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Section: Introductionmentioning

confidence: 99%

Psychosocial Adjustment Strategies among Typically Developing Adolescents of Siblings with Autism Spectrum Disorder

Mas'ut¹,

Ali²

2023

IJARBSS

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“…In addition, problem behaviours adversely affect caregivers financially, psychologically, and physically (15)(16)(17)(18)(19). Prior research has demonstrated that siblings of children with ASD often undergo emotional distress due to problem behaviours, affecting their upbringing and their relationship with their siblings with ASD (20,21).…”

Section: Introductionmentioning

confidence: 99%

Problem behaviours and caregiver burden among children with Autism Spectrum Disorder in Kuching, Sarawak

Chua,

Abd Rahman,

Ratnasingam

2023

Front. Psychiatry

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ObjectiveCaregivers of children with Autism Spectrum Disorder (ASD) often experience emotional and psychological distress, as well as disruptions to family life and employment due to the challenges of caring for children with ASD. This study examines the relationship between problem behaviours and caregiver burden among children with ASD.MethodA cross-sectional study using convenience sampling recruited 230 caregivers of children with ASD aged 4 to 18 years from selected autism centres in Kuching, Sarawak. The caregivers completed the Aberrant Behaviour Checklist-2 and the Zarit Burden Interview.ResultsUnivariate analysis revealed a significant difference in caregiver burden for children with ASD receiving medications (p = 0.013), registered with the Social Welfare Department (p = 0.036), and having siblings with ASD (p = 0.046). About 40% of the children exhibited at least one domain of problem behaviour. More than half of the caregivers (53.9%) experienced burden, with the majority experiencing mild burden. Positive associations were seen between irritability (r = 0.458, p < 0.01), social withdrawal (r = 0.439, p < 0.01), stereotypic behaviour (r = 0.392, p < 0.01), hyperactivity/non-compliance (r = 0.467, p < 0.01), and caregiver burden. Child factors, including the duration of problem behaviour (r = 0.182, p = 0.007), medication use (eta = 0.187, p = 0.005), Social Welfare Department registration (eta = 0.138, p = 0.036), and the presence of siblings with ASD (eta = 0.130, p = 0.046) were associated with caregiver burden. Multiple linear regression showed that hyperactivity/noncompliance significantly predicted caregiver burden.ConclusionSpecific problem behaviours in children with ASD were associated with caregiver burden. These results highlight the need for interventions for the child with ASD and their caregivers.

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Close Relationships Despite the Challenges: Sibling Relationships and Autism

Trew

2024

J Autism Dev Disord

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This study explores the experiences of siblings of autistic adolescents within families. Without the novel insights generated from engaging with siblings of autistic adolescents within a qualitative framework, it can be challenging to develop strategies for practicing effectively with this group or structuring interventions with these families. Using a social constructivist approach and qualitative participatory methodology, the exploratory study was conducted using in-depth interviews with ten non-autistic siblings, analyzed via a thematic analysis method. The results reveal a common feeling of uncertainty and apprehension in the relationships, leading siblings to physical and emotional detachment from their autistic brothers or sisters. The research emphasizes the caregiving roles predominantly taken up by sisters, especially when the autistic sibling is a brother with intellectual disability. These roles exert substantial demands, with unclear boundaries suggesting potential role confusion. The findings have important implications for family practice, necessitating the need to address role conflict and promote role clarity. They also underscore the gendered nature of caregiving, advocating for support to sister-siblings in these roles. This study revealed the complexities of sibling relationships in families with a member who is an autistic adolescent sibling. The study suggests interventions that promote open family dialogues for a balanced approach to family roles, providing valuable guidance to practitioners to enhance siblings and family well-being.

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“Sometimes I Feel Grateful…”: Experiences of the Adolescent Siblings of Children with Autism Spectrum Disorder in Malaysia

Cited by 7 publications

References 55 publications

Psychosocial Adjustment Strategies among Typically Developing Adolescents of Siblings with Autism Spectrum Disorder

Psychosocial Adjustment Strategies among Typically Developing Adolescents of Siblings with Autism Spectrum Disorder

Problem behaviours and caregiver burden among children with Autism Spectrum Disorder in Kuching, Sarawak

Close Relationships Despite the Challenges: Sibling Relationships and Autism

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