Abstract
There presently exists limited information or studies on means to support immigrant families as they attempt to access quality services for children with autism spectrum disorder (ASD). An ASD diagnosis is the gateway to support services and adapted interventions. Yet, studies show that immigrant families typically experience longer delays in obtaining a diagnosis and more challenges in gaining access to services. Twenty-four families who immigrated to Québec (Canada) participated in semi-structured interviews in which they listed the obstacles and facilitators encountered in their service trajectory to obtain a diagnosis for their child. Families’ attitudes toward ASD, as a function of native culture, and their advice to other families in a similar situation are were also reported. Obstacles most often mentioned by participants were the waiting period for diagnostic services, feelings of social isolation, and a lack of professionals’ knowledge about ASD. Parental advocacy, the competency and expertise of the professionals who conducted the evaluation, and parental education and awareness of ASD were the most frequently named facilitators. Finally, the most common recommendations made to other parents were to be persistent and proactive. In light of these reported experiences and perceptions, a series of clinical recommendations are provided to guide ASD evaluation practices in multicultural communities.
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Notes
In contrast to Québec’s rehabilitation centers, which are public agencies that provide specialized services to individuals with ASD or intellectual and developmental disabilities and their families, community health centers are primary care clinics that provide general (non-specialized) health care and social services to any person residing within its territory, at no cost.
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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. The protocol for this study was reviewed and approved by the Joint Research Ethics Board for Public Rehabilitation Centers for Persons with Intellectual Disabilities and ASD in Québec and by the Research Ethics Board of the Université du Québec à Montréal.
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Rivard, M., Millau, M., Magnan, C. et al. Snakes and Ladders: Barriers and Facilitators Experienced by Immigrant Families when Accessing an Autism Spectrum Disorder Diagnosis. J Dev Phys Disabil 31, 519–539 (2019). https://doi.org/10.1007/s10882-018-9653-6
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DOI: https://doi.org/10.1007/s10882-018-9653-6