"E lē ma’i, o le malosi!" = (He’s not sick, he’s strong!) : Pacific parents’ journey of raising autistic children in Aotearoa : a thesis presented in partial fulfilment of the requirements for the degree of Doctor of Clinical Psychology at Massey University, Albany, Aotearoa New Zealand

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Ministry of Health data estimates there are 4,000 Pacific children in Aotearoa New Zealand officially diagnosed with an Autism Spectrum Disorder. This figure is likely underestimating the true prevalence of autism within Aotearoa Pacific communities, due to diagnostic disproportionality, and a lack of autism assessments completed since the COVID-19 pandemic. Children of Indigenous and ethnic minority populations globally tend to be diagnosed later, incorrectly diagnosed, or are not referred for autism diagnosis. Indigenous and ethnic minority parents regularly have their concerns dismissed by health professionals, face lengthy delays, and endure multiple attempts at diagnostic referral. Despite the growing autistic community globally, and Pacific peoples being the fastest-growing youth population in Aotearoa, Pacific peoples’ perspectives and experiences have not been included in autism research. Consequently, no reliable data exist on Pacific autistic people, and just six percent (6%) of eligible Pacific families are accessing Disability Support Services within Aotearoa. This first Pacific-led study (based on three Pacific-Indigenous research frameworks) focuses on Pacific parents’ expert knowledge from lived experience raising their autistic children, revealing key differences from a Pacific-Indigenous context in autism conceptualisation, support access, and language and culture maintenance. Fifteen Pacific parents of autistic children from the Pasifika Autism Support Group and Pacific community in Auckland Aotearoa, participated in eight research talanoa. Findings revealed parents sought an overall state of Diasporic Adaptation to Neurodiversity which involved acceptance, adaptation, and unlearning for Pacific parents. Four subthemes together explained the experience of Pacific parents of autistic children in Aotearoa: 1) Uncharted Islands: Understanding Autism; 2) Encountering Stormy Seas: Challenges; 3) Collective Unity through Relational Resilience; and, 4) Autism Support. Pacific-Indigenous knowledge and knowledge gained from Pacific parents was woven together to create the Tapasā a Tagata Sa’ilimalo (compass for people in search of success), which can be used for navigating the experiences of Pacific parents of autistic children within Aotearoa. Together with clinical implications provided, the Tapasā a Tagata Sa’ilimalo can guide clinicians, educators, and practitioners working with Pacific families of autistic children in Aotearoa to provide culturally appropriate, family-centred care and support prior to, during, and following autism diagnosis.
Figures in this thesis are re-used with permission. Permission for Figure 2 has been requested, but not yet obtained.
Autism spectrum disorders in children, Parents of autistic children, Pacific Islanders, New Zealand, Pacific, clinical psychology, autism, language and culture, indigenous research methodology