A thematic synthesis of siblings' lived experiences of autism: Distress, responsibilities, compassion and connection

• Published in: Research in developmental disabilities 2020-02, Vol.97, p.103547-103547, Article 103547
• Main Authors: Leedham, Alexandra T., Thompson, Andrew R., Freeth, Megan
• Format: Article
• Language: English
• Subjects: Autism; Lived experience; Qualitative research; Siblings; Systematic review; Thematic synthesis
• ISSN: 0891-4222; 1873-3379
• DOI: 10.1016/j.ridd.2019.103547

•Siblings experienced empathy and affection towards their autistic siblings.•Siblings felt that their own needs were often overlooked, negatively affecting their wellbeing.•Siblings reported undertaking caring roles which were different to those typically expected.•Some experienced fear and anxiety associated with their autistic sibling’s challenging behaviours. Despite increased understandings that the whole family system is influenced by a family member being diagnosed with an Autism Spectrum Condition (ASC), the experiences of siblings can be overlooked. However, recently understanding of siblings’ experiences has begun to develop via qualitative studies. This review aimed to systematically identify, appraise and review the qualitative literature investigating the lived experience of siblings of autistic people. Six databases were systematically searched for studies reporting empirical qualitative data on the lived experience of neurotypical siblings of autistic people. Eighteen studies met inclusion criteria and were analysed using Thematic Synthesis. Data synthesis revealed four superordinate themes; Roles and responsibilities, different to what may be expected typically; Impact of behaviours, particularly aggressive behaviours; Process of adjustment, including learning and developing empathy and acceptance; Interpersonal experiences with others and between siblings. A narrative of love and empathy was present throughout. However, several participants also experienced significant difficulties affecting their mental health. Findings suggest a sense of agency, understanding ASC, time spent alone with parents, supportive environments and the chance to relate to other siblings as protective factors in facilitating positive psychological wellbeing for siblings of autistic people.