Experiences of Neurotypical Siblings of Neurodiverse people with high and complex needs in Aotearoa, New Zealand

Abstract

This study aimed to explore the childhood and adolescent experiences of neurotypical siblings of neurodiverse people with high and complex needs. A review of literature in this area identified a range of gaps and limitations in current research, particularly a lack of contemporary studies within Aotearoa. Drawing on Doka’s theory of disenfranchised grief and trauma, this small-scale exploratory study adopted a qualitative interpretive design to sensitively inquire into people’s distressing or disturbing experiences of growing up with a neurodiverse sibling. Five participants were recruited across the Tāmaki Makaurau region, each with a sibling with high and complex needs relating to their neurodiversity. The interview data was transcribed and analysed through reflexive thematic analysis. The analysis provided four overarching themes of experience: 1) a socially nullified existence which was comprised of social invisibility, a cycle of silence and feeling boxed-in by shame; 2) the shaky pillars of growth such as chaos, defence, emotional turbulence, unpredictable development and enduring grief; 3) a yearning for connection through siblinghood, a need to be seen, and a need for understanding; 4) the ingredients needed for growth, such as protective factors and post-traumatic growth. The experience of siblings was marked by an undercurrent of anxiety, which was soothed by an overwhelming feeling of love towards the neurodiverse sibling and reverence and respect for the efforts of their parents to manage an, at times, unmanageable situation. Suggestions are made for community services, counsellors, and educators regarding this population.