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

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.

This is a preview of subscription content, log in to check access.

Notes

  1. 1.

    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.

References

  1. American Psychological Association. (2017). Multicultural guidelines: An ecological approach to context, identity, and intersectionality. Retrieved from http://www.apa.org/about/policy/multicultural-guidelines.pdf

  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.

  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.

    Article  Google 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 : https://doi.org/10.1111/j.1741-1130.2009.00224.x.

  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. https://doi.org/10.1111/j.1471-6712.2009.00701.x.

    Article  PubMed  Google Scholar 

  6. Barrio, C. (2000). The cultural relevance of community support programs. Psychiatric Services, 51, 879–884. https://doi.org/10.1176/appi.ps.51.7.879.

    Article  PubMed  Google 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. https://doi.org/10.1111/j.1744-6171.2010.00228.x.

    Article  PubMed  Google 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. https://doi.org/10.1016/j.rasd.2014.08.017.

    Article  Google 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. https://doi.org/10.1542/peds.2012-3886.

    Article  PubMed  Google 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. https://doi.org/10.1007/s10803-016-2765-x.

    Article  PubMed  Google 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. https://doi.org/10.1111/j.1741-1130.2005.00002.x.

    Article  Google 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. https://doi.org/10.1007/s10803-017-3457-x.

    Article  PubMed  Google 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. https://doi.org/10.1371/journal.pone.0011551.

    Article  Google 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. https://doi.org/10.1023/B:JADD0000022611.80478.73.

    Article  PubMed  Google 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. https://doi.org/10.1111/j.1741-1130.2008.00151.x.

    Article  Google 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.

    Article  Google 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 https://www.ophq.gouv.qc.ca/fileadmin/documents/DD2084_Politique_ENG_V7.pdf

  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. https://doi.org/10.1016/j.acap.2013.03.010.

    Article  PubMed  Google 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.

  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. https://doi.org/10.1007/s10864-011-9138-5.

    Article  Google 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 https://doi.org/10.1007/s11469-017-9732-4

  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.

  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.

    Article  PubMed  Google 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. https://doi.org/10.1097/DBP.0b013e318165c7a0.

    Article  PubMed  PubMed Central  Google 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. https://doi.org/10.1352/1934-9556-51.3.141.

    Article  Google 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. https://doi.org/10.1002/mrdd.20061.

    Article  PubMed  PubMed Central  Google 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. https://doi.org/10.1542/peds.2010-2943.

    Article  PubMed  Google 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 www.iaccp.org

  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. https://doi.org/10.1007/s10826-018-1180-7

  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. https://doi.org/10.1542/peds.2009-1255L.

    Article  Google 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. https://doi.org/10.1007/s10826-011-9477-9.

    Article  Google 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. https://doi.org/10.1111/j.1365-2214.2006.00584.x.

    Article  Google 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.

  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.

  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.

  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. https://doi.org/10.1097/DBP.0000000000000261.

    Article  Google 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. https://doi.org/10.1007/BF00755222.

    Article  Google 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. https://doi.org/10.1080/03004430.2011.616931.

    Article  Google 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. https://doi.org/10.1177/1362361311435156.

    Article  PubMed  Google 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. https://doi.org/10.1177/001440299406000505.

    Article  Google 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. https://doi.org/10.1007/s10803-006-0323-7.

    Article  PubMed  PubMed Central  Google 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. https://doi.org/10.1016/j.jpeds.2012.05.012.

    Article  PubMed  Google Scholar 

  45. Welterlin, A., & LaRue, R. (2007). Serving the needs of immigrant families of children with autism. Disability & Society, 22, 747–3760. https://doi.org/10.1080/09687590701659600.

    Article  Google 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. https://doi.org/10.1023/A:1020598023809.

    Article  PubMed  Google Scholar 

Download references

Author information

Affiliations

Authors

Corresponding author

Correspondence to Mélina Rivard.

Ethics declarations

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.

Additional information

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

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

Download citation

Keywords

  • Obstacles
  • Facilitators
  • Immigrant families
  • Diagnosis trajectory
  • Autism spectrum disorder