"What is early intervention? I had no idea": Chinese parents' experiences of early supports for their autistic children in Australia

Jodie Smith, Alex Aulich,Catherine A. Bent, Christos Constantine,Kathleen Franks, Nilushi Goonetilleke,Cherie C. Green, Patricia Lee,Emily Ma, Helen Said,Rena Wang,Sarah Wood,Kristelle Hudry

Research in Autism Spectrum Disorders(2023)

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摘要
Background: Parents should be central to early supports for their autistic children, with parent involvement in and satisfaction with supports influencing child outcomes. Migrant parents likely experience different barriers to navigating and participating in early supports for their autistic children, but we have limited data here. Methods: Through a community-partnered participatory approach, we conducted semi-structured interviews with 19 migrant Chinese parents of autistic children about their experiences of the diagnosis and early intervention (EI) process. Interviews were conducted in home languages by other parents. We analysed data using reflexive thematic analysis.Results: Parents described myriad obstacles to accessing early supports with many related to being a Chinese migrant in Australia. Parents reported difficulties accepting their children's differences, faced language barriers, experienced stigmatisation/discrimination, and had limited knowledge of autism supports/systems. Funding issues, limited availability of supports and poorly coordi-nated services were additional challenges. Parents described having little choice and control over supports, often unable to access culturally-specific services. Nonetheless, parents explained how dedicated they were to their children and effectively utilised informal networks to better access supports for themselves and their children. Accessing EI gave parents hope, providing them with specific goals and strategies.Conclusion: It is recommended that professionals clearly communicate with migrant parents about autism and available post-diagnostic autism services/supports, including how to access these. Connecting parents with informal, community-specific services should especially be considered for migrant families. We recommend other potentially useful adaptations to better support migrant Chinese parents in navigating early supports for their autistic children.
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关键词
Autism,Participatory research,Migrants,Parent experiences,Early intervention
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