Experiences of having a sibling with autism spectrum disorder: a qualitative systematic review

OBJECTIVE: The aim of this systematic review was to explore the experiences of neurotypical (NT) individuals who have a sibling with autism spectrum disorder (ASD). INTRODUCTION: The presence of a child with ASD significantly impacts the life and functioning of the entire family. Support is typically associated with individuals with ASD and their parents, yet the needs of siblings of these individuals are often overlooked. Being a sibling of a person with ASD is linked to various challenges and complex situations that accompany them throughout their lives, influencing their health, personal development, and social integration. ELIGIBILITY CRITERIA: Qualitative studies involving neurotypical siblings of individuals with ASD who describe their experiences were eligible for inclusion. There were no limitations regarding age, gender, sex, or length of relationship with the sibling. We considered studies from all countries and contexts. METHODS: This study was conducted according to JBI methodology for qualitative reviews. A 3-step search strategy was used to find published and unpublished studies from the following sources: MEDLINE, CINAHL, APA PsycINFO, Scopus, SocINDEX, Web of Science, Embase, ERIC, ProQuest Dissertations and Theses, Open Dissertations, and Google Scholar (first 100 records). Screening, data extraction, and data synthesis were conducted by 2 independent reviewers. RESULTS: As a result of the search, 7445 records were detected and, after exclusion of 3737 duplicates, 3708 records were screened. Subsequently, 3546 records were excluded based on title and abstract screening, and 12 records were not retrieved. We assessed 150 reports: 66 did not meet the eligibility criteria and 59 were excluded due to quality as per the qualitative critical appraisal tool based on the dependability domain. A total of 34 studies met the eligibility criteria. The synthesis of the results led to the identification of 3 synthesized findings, based on 13 thematic categories, including 309 findings. The credibility was moderate for 2 synthetized findings (SF) and high for 1. CONCLUSIONS: Siblings of people with ASD need to develop an understanding of the disability in order to accept their siblings. They wish for a better understanding of ASD in society. In their relationships, neurotypical siblings experience moments of happiness and love as well as challenging situations caused by their siblings' disability and these experiences influence their identity; their private, family, and social lives; and impact their future choices. NT siblings may have a higher need for support. Practitioners working with individuals with ASD should consider including siblings in interventions whenever appropriate, and professional services addressing specific needs of NT siblings throughout their life should be developed, even in economically prosperous areas. Because of a low availability of research outside North America and Europe, transferability of these findings may be low considering the differences in sociocultural context.