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

Background

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.

Aims

This review aimed to systematically identify, appraise and review the qualitative literature investigating the lived experience of siblings of autistic people.

Methods and procedures

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.

Outcomes and results

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.

Conclusions and implications

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.