"I often have to explain to school staff what she needs". School experiences of non-autistic siblings growing up with an autistic brother or sister

Georgia Pavlopoulou; Clare Burns; Rosie Cleghorn; Theodora Skyrla; Julia Avnon

doi:10.1016/j.ridd.2022.104323

"I often have to explain to school staff what she needs". School experiences of non-autistic siblings growing up with an autistic brother or sister

Res Dev Disabil. 2022 Oct:129:104323. doi: 10.1016/j.ridd.2022.104323. Epub 2022 Aug 18.

Authors

Georgia Pavlopoulou¹, Clare Burns², Rosie Cleghorn², Theodora Skyrla², Julia Avnon³

Affiliations

¹ Anna Freud National Centre for Children and Families, London N1 9JH, UK; UCL Institute of Education, Group for Research in Relationships and Neurodiversity-GRRAND, Department of Psychology and Human Development, London WC1H 0AA, UK. Electronic address: georgia.pavlopoulou@ucl.ac.uk.
² UCL Institute of Education, Group for Research in Relationships and Neurodiversity-GRRAND, Department of Psychology and Human Development, London WC1H 0AA, UK.
³ Anna Freud National Centre for Children and Families, London N1 9JH, UK.

PMID: 35988460
DOI: 10.1016/j.ridd.2022.104323

Abstract

Background: Recent autism research has evidenced a shift from psychological outcomes to contextualised approaches to understanding the varying needs of non autistic siblings of autistic children across different systems. Yet, there is limited research exploring the lived experiences of siblings in their school context.

Methods: First, a group of school aged sibling advisors worked with the first author to codesign research aims, methods and dissemination practices around the topic of the school experiences of siblings who grow up with an autistic brother or sister in the UK. Then, 28 school-aged siblings of autistic children completed adapted photo-elicitation interviews, to discuss their school experiences. A background questionnaire was also administered to their parents and carers.

Results: Thematic analysis was employed. The master themes included: (i) Impact of home experiences in schoolwork, including limited personal time and sleep disruptions (ii) Siblings' school interactions impact on overall school experience, including a wide range of both typical and difficult experiences such as school day disruptions, (iii) Varied perceived levels of support and understanding, including emotional and/or educational support by family members and a sense of connectedness with peers and teachers who are autistic themselves or connected to someone with a diagnosis of autism.

Implications: The results underline the ways home experiences can have an impact on school life of siblings, the positive contribution of the autistic school staff and/or staff who have an autistic family member and the need for an organisational culture of inclusivity and widespread acceptance and awareness around issues of neurodiversity. Our findings suggest several implications for school psychologists in core functions of the educational psychologists' role including training, consultation, assessment, and whole school support.

Data availability statement: The datasets generated for this study are not readily available because they include sensitive data (photos of siblings' houses, family members, personal objects, and school timetables). Requests to access the datasets should be directed to corresponding author.

Keywords: Autism; Educational psychology; School experiences; School mental health; Siblings.

MeSH terms

Adaptation, Psychological
Autistic Disorder* / psychology
Caregivers
Child
Family
Female
Humans
Male
Schools
Siblings* / psychology