‘I don't live with autism; I live with my sister’. Sisters’ accounts on growing up with their preverbal autistic siblings (original) (raw)
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This article reports on the lived experiences of 11 adolescents who have a brother or a sister with a diagnosis of autism spectrum condition. Through semistructured, in‐depth, in‐person interviews , these adolescents shared their experiences and perceptions. These exploratory findings can be used to inform the practice of social workers and other health professionals, and future research. Implications for practice focus on the importance of exploring experiences and perceptions of siblings of children diagnosed with autism spectrum condition to enhance support services for these siblings.
Experiences of Siblings of Individuals with Autism Spectrum Disorders
Autism Research and Treatment, 2012
The purpose of this study was to explore the experiences of siblings of individuals with autism spectrum disorders (ASDs) and identify their self-reported support needs. We conducted in-person semi-structured interviews with 12 siblings aged 7 to 15 of children aged 6 to 15 with ASDs. Employing a qualitative collective case study research method, we conducted cross-case analyses to address our research questions. Three major themes emerged: (a) descriptions of the sibling subsystem (b) cohesion between and among the siblings, and (c) adaptability of the participant siblings to having family members with ASDs. Discussion of these findings and recommendations for future research contributes to the existing literature on siblings of children with disabilities.
Growing up with autism : experiences and perceptions of neuro-typically developing sisters
2016
- an estimated 150,000 people aged 0-19 have a diagnosis of ASD in the UK. Atkinson and Crawforth (1995) found 80% of children with learning disabilities share their home with a NTD sibling. Assuming 80% of children and young people with ASD have just one NTD sibling, one can estimate at least 120,000 NTD children and young people live with a sibling of ASD in the UK. 1.1.1 Families and ASD Although ASD is defined as impairments in social communication, social interaction and social understanding and imagination (Wing & Gould, 1979), degree of impairment varies significantly between individuals. Cognitive ability, method of communication and co-morbid medical conditions such as epilepsy
Journal of Autism and Developmental Disorders
Sibling relationships remain understudied in typically developing adolescents who have siblings with autism spectrum disorder (ASD). This study explored the lived experiences and perceptions of adolescents who have a brother or a sister with a diagnosis of ASD using semi-structured interviews. Using thematic analysis, the participants reported having difficulties communicating with their siblings. Feeling a mixture of emotions was common when interacting with their siblings with ASD and emotional self-regulation was a typical coping strategy utilized by these adolescents. Despite the challenges, having a sibling with ASD led to closer relationships between the siblings. These findings offer insights into these adolescents' needs and how they may be best supported, informing the practice of speech-language pathology and other health professions.
Experiences of siblings to children with autism spectrum disorder
Frontiers in Psychiatry, 2022
Autism spectrum disorder (ASD) is prevalent globally resulting in increased awareness and understanding of the disorder internationally and to a lesser extent in Southern African countries. This understanding has predominantly been in relation to the impact of the disorder on the neurodivergent child and family relations. Internationally, limited research has explored the impact on neurotypical siblings who have been raised alongside children diagnosed with ASD, with a dearth of such studies emerging from the South African context. The importance of neurotypical siblings’ developmental experiences emerging from their immediate environment is significant within the traditionally collectivist nation of South Africa. For this reason, this study aimed to explore South African neurotypical siblings’ experiences of living with a brother or sister diagnosed with ASD; through a qualitative study adopting an interpretative phenomenological design. Semi-structured interviews, aimed at generating demographic data and exploring the experiences of being raised alongside a sibling diagnosed with ASD, were conducted with eight university students. The data generated were analyzed employing the five stages of interpretive phenomenological analysis approach. Themes of emotional burden, perceived family dynamics, acceptance, and identity development emerged through data analysis. The participants reported experiences of premature development, unfair treatment, and feelings of being overburdened, along with reported efforts toward acceptance of their sibling’s diagnosis, and support from community members. Consequently, an understanding that their neurodivergent sibling played a key role in the development of their identities and career trajectories emerged. The impact of being raised alongside a sibling diagnosed with ASD highlights the need for additional support for neurotypical individuals, supported by programs to enhance awareness about ASD in the general South African community. These interventions would be aimed at mitigating the impact of heightened childhood stress, stigmatization, and marginalization.
Journal of Intellectual Disability Research, 2011
Background The concept of family quality of life is becoming increasingly important in family support programmes. This concept describes the quality of life of all family members and the family system as a whole, but only the opinion of the parents has been included. The opinion of the siblings has been incorporated in the opinions of the parents, although research has shown that there is discordance between parents' and siblings' reports. The principal goal of this study is to investigate how young siblings of children with intellectual disability define their quality of life as a sibling. Method As we were more concerned with understanding the experience of being a sibling from the siblings' own frame of reference, we opted for a qualitative research design and more specifically used in-depth, phenomenology-based interviews. Data were sorted by means of a process of continuously comparing the codes according to the principles of grounded theory. Results Siblings described the following nine domains as domains of sibling quality of life: joint activities, mutual understanding, private time, acceptance, forbearance, trust in well-being, exchanging experiences, social support and dealing with the outside world. Conclusions This study shows not only that siblings can define their quality of life, but also that this definition of sibling quality of life differs from the family quality of life concept. Therefore, it may be not only a valuable addition to the family quality of life concept but also an appropriate concept to describe siblings' experience.
Journal of Population and Social Studies, 2019
This study adopts a qualitative descriptive phenomenological approach to explore, analyze and document the experiences of mothers raising and living with autistic children. In doing so, the study recruited seven mothers of autistic children in Myanmar using a non-probability, purposive sampling method. Data was obtained through in-depth interviews and focus group discussion, and it was analyzed using Giorgi's method. Six major themes emerged: loss of parental hopes and childhood significances, initial recognition and diagnosis, misunderstanding and assumptions about autism, mixtures of emotions experienced by the mothers, challenges in nurturing autistic children, and the mothers' expectations about the future of their children. Raising and caring for an autistic child was challenging for the mothers as their children required constant care round the clock and for the entire span of their lives. Therefore, a comprehensive training in nursing is vital for these mothers. The findings of the study contribute to the literature on autism and forms as a basis for future research on this topic, especially on how living with an autistic child can have an effect on their siblings and other caregivers of autistic children using different approaches.
‘ Outcomes ’ for Siblings of Children with Autism — What Do We Know ?
2017
Purpose of Review A range of interacting factors/mechanisms at the individual, family, and wider systems levels influences siblings living in families where one sibling has autism. We introduce the Sibling Embedded Systems Framework which aims to contextualise siblings’ experience and characterise the multiple and interacting factors influencing family and, in particular, sibling outcomes. Recent Findings Findings from studies that have reported outcomes for siblings of children with autism are equivocal, ranging from negative impact, no difference, to positive experience. This is likely due to the complex nature of understanding the sibling experience. We focus on particular elements of the framework and review recent novel literature to help guide future directions for research and practice including the influence of culture, methodological considerations, and wider participatory methods. Summary The Siblings Embedded System Framework can be used to understand interactive factors ...
The Psychosocial Effects of Having a Sibling with Autism Spectrum Disorder
Exceptionality Education International, 2020
Siblings play an important role in one another’s overall development; thus, the sibling relationship is an important subsystem within the family unit. However, in families where one child has an autism spectrum disorder diagnosis, the dynamics between siblings may be different than in families with typically developing children due to the associated deficits in communication. Therefore, this mixed-method study examined the perceptions of six typically developing children regarding their relationship with a sibling with autism. Parents were heterosexual couples, and families were white and mostly middle class. Semi-structured interviews and questionnaires regarding the sibling relationship were administered to the typically developing child. Identification of major themes followed by focused coding was conducted to capture the essence of what was said and to categorize the most frequent themes. Overall, typically developing children highlighted both positive and negative features of ...