Snakes and Ladders: Barriers and Facilitators Experienced by Immigrant Families when Accessing an Autism Spectrum Disorder Diagnosis

  • Mélina RivardEmail author
  • Marie Millau
  • Charlotte Magnan
  • Catherine Mello
  • Mélina Boulé


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.


Obstacles Facilitators Immigrant families Diagnosis trajectory Autism spectrum disorder 


Compliance with Ethical Standards

Ethical Approval

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.

Informed Consent

All the participants were clearly informed and consent to participate to the project.

Conflict of Interest

The other authors do not report any conflicts of interest of any kind.


  1. American Psychological Association. (2017). Multicultural guidelines: An ecological approach to context, identity, and intersectionality. Retrieved from
  2. Bailey, D., Scarborough, A., Hebbeler, K., Spiker, D., & Mallik, S. (2004). National early intervention longitudinal l study: Family outcomes at the end of early intervention. Menlo Park: SRI International.Google Scholar
  3. Baio, J., Wiggins, L., Christensen, D. L., Maenner, M. J., Daniels, J., Warren, Z., et al. (2018). Prevalence of autism spectrum disorder among children aged 8 years—Autism and developmental disabilities monitoring network, 11 sites, United States, 2014. MMWR Surveillance Summaries, 67, 1–23.CrossRefGoogle Scholar
  4. Barelds, A., Van De Goor, I., Bos, M., Van Heck, G., & Schols, J. (2009). Care and service trajectories for people with intellectual disabilities: Defining its course and quality determinants from the client’s perspective. Journal of policy and practice in intellectual disability, 6, 163–172. doi :
  5. Barelds, A., Van De Goor, I., Van Heck, G., & Schols, J. (2010). Quality of care and service trajectories for people with intellectual disabilities: Defining the aspects of quality from the client’s perspective. Scandinavian Journal of Caring Sciences, 24, 164–174. Scholar
  6. Barrio, C. (2000). The cultural relevance of community support programs. Psychiatric Services, 51, 879–884. Scholar
  7. Bilgin, H., & Kucuk, L. (2010). Raising an autistic child: Perspectives from Turkish mothers. Journal of Child and Adolescent Psychiatric Nursing, 23, 92–99. Scholar
  8. Blacher, J., Cohen, S. R., & Azad, G. (2014). In the eye of the beholder: Reports of autism symptoms by Anglo and Latino mothers. Research in Autism Spectrum Disorders, 8, 1648–1656. Scholar
  9. Broder-Fingert, S., Shui, A., Pulcini, C. D., Kurowski, D., & Perrin, J. M. (2013). Racial and ethnic differences in subspecialty service use by children with autism. Pediatrics, 132, 94–100. Scholar
  10. Burke, M.-M., Magaña, S., Garcia, M., & Mello, M. P. (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, 2532–2538. Scholar
  11. Cho, S. J., & Gannotti, M. E. (2005). Korean-American mothers’ perception of professional support in early intervention and special education programs. Journal of Policy and Practice in Intellectual Disabilities, 2, 1–9. Scholar
  12. Cohen, S. R., & Miguel, J. (2018). Amor and social stigma: ASD beliefs among immigrant Mexican parents. Journal of Autism and Developmental Disorders, 48, 1995–2009. Scholar
  13. Durkin, M. S., Maenner, M. J., Meaney, F. J., Levy, S. E., DiGuiseppi, C., Nicholas, J. S., Kirby, R. S., Pinto-Martin, J. A., & Schieve, L. A. (2010). Socioeconomic inequality in the prevalence of autism spectrum disorder: Evidence from a U.S. cross-sectional study. PloSOne, 5, e11551. Scholar
  14. Dyches, T. T., Wilder, L. K., Sudweeks, R. R., Obiakor, F. E., & Algozzine, B. (2004). Multicultural issues in autism. Journal of Autism and Developmental Disorders, 34, 211–222. Scholar
  15. Emerson, E., McConkey, R., Walsh, P., & Felce, D. (2008). Intellectual disability in a global context. Journal of Policy and Practice in Intellectual Disability, 5, 79–80. Scholar
  16. Fombonne, E. (2003). Epidemiological surveys of autism and other pervasive developmental disorders: An update. Journal of Autism and Developmental Disorders, 33, 365–382.CrossRefGoogle Scholar
  17. Gardiner, E., & French, C. (2011). The relevance of cultural sensitivity in early intervention. Exceptionality Education International, 21, 34–49.Google Scholar
  18. Government of Québec (2009). Equals in every respect: Because rights are meant to be rxercised. Retrieved from
  19. Harstad, E., Huntington, N., Bacic, J., & Barbaresi, W. (2013). Disparity of care for children with parent reported autism spectrum disorders. Academic Pediatrics, 13, 334–339. Scholar
  20. IASSID Families Special Interest Research Group FSIRG (2012). Families supporting a child with intellectual or developmental disabilities: The current state of knowledge. Position paper.Google Scholar
  21. Jones, E. W., Hoerger, M., Hughes, J. C., Williams, B. M., Jones, B., Moseley, Y., Hughes, D. R., & Prys, D. (2011). ABA and diverse cultural and linguistic environments: A welsh perspective. Journal of Behavioral Education, 20, 297–305. Scholar
  22. Khanlou, N., Haque, N., Mustafa, N., Vazquez, L., Mantini, A. & Weiss, J. (2017). Access Barriers to Services by Immigrant Mothers of Children with Autism in Canada. Int J Ment Health Addiction. 15, 239–259
  23. Klingner, J. K., Blanchett, W. J., & Harry, B. (2009). Race, culture, and developmental disabilities. In S. L. Odom, R. H. Horner, M. Snell, & J. Blacher (Eds.), Handbook on developmental disabilities (pp. 55–75). New York: Guilford Press.Google Scholar
  24. L’Écuyer, R. (1990). Méthodologie de l'analyse développementale de contenu [Developmental content analysis methods]. Quebec: University of Quebec Press.Google Scholar
  25. Levy, S. E., Mandell, D. S., Merhar, S., Ittenbach, R. F., & Pinto-Martin, J. A. (2003). Use of complementary and alternative medicine among children recently diagnosed with autistic spectrum disorder. Journal of Developmental and Behavioral Pediatrics, 24, 418–423.CrossRefGoogle Scholar
  26. Liptak, G. S., Benzoni, L. B., Mruzek, D. W., Nolan, K. W., Thingvoll, M. A., Wade, C. M., & Fryer, G. E. (2008). Disparities in diagnosis and access to health service for children with autism: Data from the national survey of children’s health. Journal of Developmental and Behavioral Pediatrics, 29, 152–160. Scholar
  27. Magaña, S., Lopez, K., Aguinaga, A., & Morton, H. (2013). Access to diagnosis and treatment services among Latino children with autism spectrum disorders. Intellectual and Developmental Disabilities, 51, 141–153. Scholar
  28. Mandell, D. S., & Novak, M. (2005). The role of culture in families’ treatment decisions for children with autism spectrum disorders. Mental Retardation and Developmental Disabilities Research Reviews, 11, 110–115. Scholar
  29. Manning, S. E., Davin, C. A., Barfield, W. D., Kotelchuck, M., Clements, K., Diop, H., Osbahr, T., & Smith, L. A. (2011). Early diagnoses of autism spectrum disorders in Massachusetts birth cohorts, 2001–2005. Pediatrics, 127, 1043–1051. Scholar
  30. Millau, M., Rivard, M., Mercier, C., Mello, C. (2016). Parenting Stress in Immigrant Families of Children with an Autism Spectrum Disorder: A comparaison with Families from the Host Culture. In C. Roland-Lévy, P. Denoux, B. Voyer, P. Boski & W. K. Gabrenya Jr. (Eds.), Unity, diversity and culture: Research and Scholarship Selected from the 22nd Congress of the International Association for Cross-Cultural Psychology. Melbourne, Florida USA: International Association for Cross-Cultural Psychology. Accessed via
  31. Millau, M., Rivard, M., Mello, C. (2018). Immigrant families’ perception of the causes, first manifestations, and treatment of autism spectrum disorder. Journal of Child and Family Studies.
  32. Montes, G., Halterman, & Magyar, C. I. (2009). Access to and satisfaction with school and community health services for US children with ASD. Pediatrics, 124(Supplement 4), 407–413. Scholar
  33. Ravindran, N., & Myers, B. J. (2012). Cultural influences on perceptions of health, illness, and disability: A review and focus on autism. Journal of Child and Family Studies, 21, 311–319. Scholar
  34. Renty, J., & Roeyers, H. (2006). Satisfaction with formal support and education for children with autism spectrum disorder: The voices of the parents. Child: Care, Health and Development, 32, 371–385. Scholar
  35. Rivard, M., Terroux, A., Parent-Boursier, C., & Mercier, C. (2014). Determinants of stress in parents of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 44(7), 1609-1620.Google Scholar
  36. Rivard, M., Lépine, A., Mercier, C., & Morin, M. (2015). Quality determinants of services for parents of young children with autism spectrum disorders. Journal of Child and Family Studies, 24 (5), 2388-2397.Google Scholar
  37. Rivard, M., Morin, D., Morin, M., Bolduc, M. & Mercier, C., avec la collaboration de Nadia Abouzeid et Malvina Klag (2018). Évaluer l'implantation d'un programme : exemple de l'évaluation d'une nouvelle clinique d'évaluation diagnostique en trouble du spectre de l'autisme et retards de développement. Dans l'ouvrage collectif Recherches qualitatives et quantitatives en sciences humaines et sociales (pp. 19-46). Montreal : Editions JFB.Google Scholar
  38. Roth, B. M., Kralovic, S., Roizen, N. J., Spannagel, S. C., Minich, N., & Knapp, J. (2016). Impact of autism navigator on access to services. Journal of Developmental & Behavioral Pediatrics, 37, 188–195. Scholar
  39. Ryan, A. S., & Smith, M. J. (1989). Parental reactions to developmental disabilities in Chinese American families. Child and Adolescent Social Work Journal, 6, 283–299. Scholar
  40. Samadi, S. A., McConkey, R., & Kelly, G. (2011). The information and support needs of Iranian parents of children with autism spectrum disorders. Early Child Development and Care, 182, 1439–1453. Scholar
  41. Samadi, S. A., McConkey, R., & Kelly, G. (2012). Enhancing parental well-being and coping through a family-centred short course for Iranian parents of children with an autism spectrum disorders. Autism, 17, 27–43. Scholar
  42. Sontag, J. C., & Schacht, R. (1994). An ethnic comparison of parent participation and information needs in early intervention. Exceptional Children, 60, 422–433. Scholar
  43. Thomas, K. C., Ellis, A. R., McLaurin, C., Daniels, J., & Morrissey, J. P. (2007). Access to care for autism-related services. Journal of Autism and Developmental Disorders, 37, 1902–1912. Scholar
  44. Valicenti-McDermott, M., Hottinger, K., Seijo, R., & Shulman, L. (2012). Age at diagnosis of autism spectrum disorders. The Journal of Pediatrics, 161, 554–556. Scholar
  45. Welterlin, A., & LaRue, R. (2007). Serving the needs of immigrant families of children with autism. Disability & Society, 22, 747–3760. Scholar
  46. Wolery, M., & Garfinkle, A. N. (2002). Measures in intervention research with young children who have autism. Journal of Autism and Developmental Disorders, 32, 463–478. Scholar

Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  1. 1.Université du Québec à Montréal, Institut de santé mentale de MontréalMontréalCanada
  2. 2.The Pennsylvania State University, BerksReadingUSA

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