“We’ve got to fight; that’s the story of our lives”: advocacy experience of immigrant families of children with autism spectrum disorder

References

• Alper, S., P. J. Schloss, and C. N. Schloss. 1995. “Families of Children with Disabilities in Elementary and Middle School: Advocacy Models and Strategies.” Exceptional Children 62 (3): 261–270. doi:10.1177/001440299606200307.
   Web of Science ®Google Scholar
• Balcazar, F. E., C. B. Keys, J. F. Bertram, and T. Rizzo. 1996. “Advocate Development in the Field of Developmental Disabilities: A Data-based Conceptual Model.” Mental Retardation-Washington 34 (6): 341–351.
   PubMedGoogle Scholar
• Ben-Cheikh, I., and C. Rousseau. 2013. “Autisme et soutien social dans des familles d’immigration récente: L’expérience de parents originaires du Maghreb.” Santé mentale au Québec 38 (1): 189–205. doi:10.7202/1019192ar.
   PubMedGoogle Scholar
• Boshoff, K., D. Gibbs, R. L. Phillips, L. Wiles, and L. Porter. 2016. “Parents‘ Voices: ‘Why and How We Advocate’. A Meta-synthesis of Parents‘ Experiences of Advocating for Their Child with Autism Spectrum Disorder.” Child: Care, Health and Development 42 (6): 784–797. doi:10.1111/cch.12383.
   PubMed Web of Science ®Google Scholar
• Burke, M. M., M. K. Buren, K. Rios, M. Garcia, and S. Magaña. 2019a. “Examining the Short-term Follow-up Advocacy Activities among Latino Families of Children with Autism Spectrum Disorder.” Research and Practice in Intellectual and Developmental Disabilities 6 (1): 76–85. doi:10.1080/23297018.2018.1439767.
   Web of Science ®Google Scholar
• Burke, M. M., and R. M. Hodapp. 2014. “Relating Stress of Mothers of Children with Developmental Disabilities to Family-School Partnerships.” Intellectual and Developmental Disabilities 52 (1): 13–23. doi:10.1352/1934-9556-52.1.13.
   PubMed Web of Science ®Google Scholar
• Burke, M. M., and R. M. Hodapp. 2016. “The Nature, Correlates, and Conditions of Parental Advocacy in Special Education.” Exceptionality 24 (3): 137–150. doi:10.1080/09362835.2015.1064412.
   Web of Science ®Google Scholar
• Burke, M. M., S. Magaña, M. Garcia, and M. P. Mello. 2016. “Brief Report: The Feasibility and Effectiveness of an Advocacy Program for Latino Families of Children with Autism Spectrum Disorder.” Journal of Autism and Developmental Disorders 46 (7): 2532–2538. doi:10.1007/s10803-016-2765-x.
   PubMed Web of Science ®Google Scholar
• Burke, M. M., K. Rios, M. Garcia, L. Sandman, B. Lopez, and S. Magaña. 2019b. “Examining the Perspectives of Latino Families of Children with Autism Spectrum Disorder Towards Advocacy.” Exceptionality 27 (3): 201–214. doi:10.1080/09362835.2018.1433041.
   Web of Science ®Google Scholar
• Camard, S. 2020. “L’activité de défense des droits et des intérêts de son enfant (advocacy parentale): Enquête narrative auprès de la mère d’un enfant ayant un trouble du spectre de l’autisme.” In Accessibilité et participation sociale. Vers une mise en oeuvre de la CRDPH, edited by M. Masse, G. Piérart, and D. Wolf, 191–212. Genève: IES éditions.
   Google Scholar
• Chatenoud, C., D. Odier Guedj, S. Camard, M. Rivard, A. Heather, and A. P. Turnbull. 2019. “Advocacy de parents de jeunes enfants ayant un trouble du développement et mécanismes d’exclusion au préscolaire: étude de portée.” McGill Journal of Éducation\revue Des Sciences de L’éducation de McGill 54 (2): 388–406.
   Google Scholar
• Clot, Y. 2005. “Pourquoi et comment s’occuper du développement en clinique de l’activité.” Colloque ARTCO, Symposium International, Lyon, France, 4–5.
   Google Scholar
• Erwin, E. J., and L. C. Soodak. 1995. “I Never Knew I Could Stand up to the System: Families’ Perspectives on Pursuing Inclusive Education.” Research and Practice for Persons with Severe Disabilities 20 (2): 136–146.
   Google Scholar
• Fontil, L., and H. H. Pertrakos. 2015. “Transition to School: The Experiences of Canadian and Immigrant Families of Children with Autism Spectrum Disorders.” Psychology in the Schools 52 (8): 773–788. doi:10.1002/pits.21859.
   Web of Science ®Google Scholar
• Gardou, C. 2010. Le Handicap Au Risque Des Cultures: Variations Anthropologiques. Toulouse: Erès.
   Google Scholar
• Haines, S. J., G. L. Francis, T. G. Mueller, C.-Y. Chiu, M. M. Burke, K. Kyzar, K. G. Shepherd, N. Holdren, H. M. Aldersey, and A. P. Turnbull. 2017. “Reconceptualizing Family-professional Partnership for Inclusive Schools: A Call to Action.” Inclusion 5 (4): 234–247. doi:10.1352/2326-6988-5.4.234.
   Google Scholar
• Hess, R. S., A. Molina, and E. B. Kozleski. 2006. “Until Somebody Hears Me: Parental Voice and Advocacy in Special Education Decision-making.” British Journal of Special Education 33 (3): 148–157. doi:10.1111/j.1467-8578.2006.00430.x.
   Google Scholar
• Lopez, K., J. Reed, and S. Magaña. 2019. “Associations among Family Burden, Optimism, Services Received and Unmet Need within Families of Children with ASD.” Children and Youth Services Review 98: 105–112. doi:10.1016/j.childyouth.2018.12.027.
   Web of Science ®Google Scholar
• Luelmo, P., and C. Kasari. 2021. “Randomized Pilot Study of a Special Education Advocacy Program for Latinx/minority Parents of Children with Autism Spectrum Disorder.” Autism 25 (6): 1809–1815. doi:10.1177/1362361321998561.
   PubMed Web of Science ®Google Scholar
• Magaña, S., K. Lopez, and W. Machalicek. 2017. “Parents Taking Action: A Psycho-educational Intervention for Latino Parents of Children with ASD.” Family Process 56 (1): 59–74. doi:10.1111/famp.12169.
   PubMed Web of Science ®Google Scholar
• Magaña, S., S. L. Parish, R. A. Rose, M. E. S. Timberlake, and J. G. 2012. “Racial and Ethnic Disparities in Quality of Health Care among Children with Autism and Other Developmental Disabilities.” Intellectual and Developmental Disabilities 50 (4): 287–299. doi:10.1352/1934-9556-50.4.287.
   PubMed Web of Science ®Google Scholar
• Nuske, H. J., E. McGhee Hassrick, B. Bronstein, L. Hauptman, C. Aponte, L. Levato, A. Stahmer, et al. 2019. “Broken Bridges—new School Transitions for Students with Autism Spectrum Disorder: A Systematic Review on Difficulties and Strategies for Success.” Autism 23 (2): 306–325. doi:10.1177/1362361318754529.
   PubMed Web of Science ®Google Scholar
• Paillé, P., and A. Mucchielli. 2016. L’analyse Qualitative En Sciences Humaines Et Sociales. 4th ed. Malakoff (France): Armand Colin.
   Google Scholar
• Rivard, M., A. Lépine, C. Mercier, and M. Morin. 2015. “Quality Determinants of Services for Parents of Young Children with Autism Spectrum Disorders.” Journal of Child and Family Studies 24 (8): 2388–2397. doi:10.1007/s10826-014-0041-2.
   Web of Science ®Google Scholar
• Rivard, M., C. Magnan, C. Chatenoud, C. Millau, C. Mejia-Cardenas, and M. Boulé. 2020. “Parents’ Perspectives on the Transition from Early Intensive Behavioural Intervention to School: Barriers, Facilitators, and Experience of Partnership.” Exceptionality Education International 30 (3). doi:10.5206/eei.v30i3.13380.
   Google Scholar
• Rivard, M., M. Millau, C. Magnan, C. Mello, and M. Boulé. 2019. “Snakes and Ladders: Barriers and Facilitators Experienced by Immigrant Families When Accessing an Autism Spectrum Disorder Diagnosis.” Journal of Developmental and Physical Disabilities 31 (4): 519–539. doi:10.1007/s10882-018-9653-6.
   Web of Science ®Google Scholar
• Shepherd, C. A., and C. Waddell. 2015. “A Qualitative Study of Autism Policy in Canada: Seeking Consensus on Children’s Services.” Journal of Autism and Developmental Disorders 45 (11): 3550–3564. doi:10.1007/s10803-015-2502-x.
   PubMed Web of Science ®Google Scholar
• Sritharan, B., and M. M. Koola. 2019. “Barriers Faced by Immigrant Families of Children with Autism: A Program to Address the Challenges.” Asian Journal of Psychiatry 39: 53–57. doi:10.1016/j.ajp.2018.11.017.
   PubMed Web of Science ®Google Scholar
• Stahmer, A. C., S. Vejnoska, S. Iadarola, D. Straiton, F. R. Segovia, P. Luelmo, E. H. Morgan, et al. 2019. “Caregiver Voices: Cross-Cultural Input on Improving Access to Autism Services.” Journal of Racial and Ethnic Health Disparities 6 (4): 752–773. doi:10.1007/s40615-019-00575-y.
   PubMed Web of Science ®Google Scholar
• Trainor, A. A. 2010. “Diverse Approaches to Parent Advocacy during Special Education Home—School Interactions Identification and Use of Cultural and Social Capital.” Remedial and Special Education 31 (1): 34–47. doi:10.1177/0741932508324401.
   Web of Science ®Google Scholar
• Turnbull, A. A., H. R. Turnbull, E. J. Erwin, L. C. Soodak, and K. A. Shogren. 2015. Families, Professionals, and Exceptionality: Positive Outcomes through Partnerships and Trust. 7th ed. Upper Saddle River, N.J.: Pearson.
   Google Scholar
• Valicenti-mcdermott, M., K. Hottinger, R. Seijo, and L. Shulman. 2012. “Age at Diagnosis of Autism Spectrum Disorders.” The Journal of Pediatrics 161 (3): 554–556. doi:10.1016/j.jpeds.2012.05.012.
   PubMed Web of Science ®Google Scholar
• Wang, M., H. Mannan, D. Poston, A. P. Turnbull, and J. A. Summers. 2004. “Parents’ Perceptions of Advocacy Activities and Their Impact on Family Quality of Life.” Research and Practice for Persons with Severe Disabilities 29 (2): 115–144. doi:10.2511/rpsd.29.2.144.
   Web of Science ®Google Scholar
• Wright, A. C., and S. Taylor. 2014. “Advocacy by Parents of Young Children with Special Needs: Activities, Processes, and Perceived Effectiveness.” Journal of Social Service Research 40 (5): 591–605. doi:10.1080/01488376.2014.896850.
   Web of Science ®Google Scholar