Through their eyes: Sisters' experiences growing up with a sibling with Autism

Background: Over the past several decades most research studies have focused on parental experiences and coping strategies with children with Autism Spectrum Disorder (ASD). Siblings receive scant attention in the research... [ view full abstract ]

Background: Over the past several decades most research studies have focused on parental experiences and coping strategies with children with Autism Spectrum Disorder (ASD). Siblings receive scant attention in the research and in the clinical practice.

Objectives:The objective of this study was to explore typically developing (TD) sisters' experience on how is it to grow up with a brother or sister with ASD.

Methods: Sibling’s experiences can be complex and often difficult to capture using traditional methods. For that reason mentalizing techniques and photographs were employed combined this with interviews, which can provide deeper insight into multisensory experiences beyond verbal or written discourse.
Photo voice long interviews were conducted. 19 typically developing (TD) sisters aged 11–14 years took part in the study.Phenomenological Analysis (IPA) was employed.

Results: The overarching themes are environmental influences and copying in the life of sisters growing up with a brother or sister with Autism. The master themes include: (i) sisters’ interaction with their siblings, (ii) sisters’ interaction with their parents (iii), a family life centred to Autism which has an impact on every day sleep, study, social and leisure time for the TD siblings and (iv) inter-personal copying

Discussion: As experts of their own lived experience, sisters shed light on their day-to-day experiences. Their themes may help to draw attention to an appreciation of positive interactions and to the life that is possible while planning for the parts that remain a struggle when living with ASD. Photo voice, as a methodological choice, facilitated the expression of the participants' experiences by equalizing the research process and expose take for granted views on siblings’ experiences.

The study was approved by the UCL, Institute of Education Research Ethics Committee. Then, a flyer was sent to the families to give an opportunity to express their interest. Parents contacted the researcher by telephone to... [ view full abstract ]

The study was approved by the UCL, Institute of Education Research Ethics Committee. Then, a flyer was sent to the families to give an opportunity to express their interest. Parents contacted the researcher by telephone to arrange a suitable time to participate in the study. All parents were provided with full details of the study and gave written informed consent for their child to take part. Siblings were also asked for their assent. Typically developing siblings were interviewed individually in a quiet room. ASD siblings were tested in the Day centre where they attended therapies. Parents were also invited to complete demographics and sensory reports. During the interview session, the researcher started warm-up games with the voice recorder to familiarise the children with the equipment. Each interview was audio-recorded on a small digital recorder, positioned inconspicuously in the room. Code numbers were assigned to each interview and announced at the beginning of each recording. No real names were used.