Module 7: Addressing Barriers to Care

Learning Objectives for Module 7:

  1. Define and identify language-based barriers to care (e.g., non-verbal, English as a second language) when working with transition age youth diagnosed with ASD and their families.
  2. Promote the sociocultural competence of care providers working with transition age youth diagnosed with ASD and their families, including the intersectionality of gender, sexual, racial, ethnic, and religious identities when assessing and treating people with this diagnosis.
  3. Identify challenges to access to care for transition age youth diagnosed with ASD and their families from historically underrepresented cultural groups or under resourced communities.

Module 7 PowerPoint Slides:

    This module includes a video Dr. Lisa Fortuna, MD, MPH discussing cultural considerations and barriers to care.

    Lucia Morales, LCSW, discusses barriers to care for Spanish speaking patients and families.


    Read more about the role of culture in the services received for individuals diagnosed with ASD here – a nation-wide report by the University of Minnesota Leadership Education in Neurodevelopmental Disabilities.

    Articles on Barriers to Care for TAY diagnosed with ASD/ID:

    Cultural Identity:

    Freeth, M., Milne, E., Sheppard, E., & Ramachandran, R. (2014). Autism across cultures: Perspectives from non-Western cultures and implications for research. In F. R. Volkmar, S. J. Rogers, R. Paul, K. A. Pelphrey, F. R. Volkmar, S. J. Rogers, … K. A. Pelphrey (Eds.), Handbook of autism and pervasive developmental disorders: Assessment, interventions, and policy (pp. 997-1013). Hoboken, NJ, US: John Wiley & Sons Inc.

    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(2), 110-115.

    Manning, S. E., Davin, C. A., Barfield, W. D., Kotelchuck, M., Clements, K., Diop, H., … & Smith, L. A. (2011). Early diagnoses of autism spectrum disorders in Massachusetts birth cohorts, 2001–2005. Pediatrics, peds-2010.

    Ratto, A. B., Anthony, B. J., Pugliese, C., Mendez, R., Safer-Lichtenstein, J., Dudley, K. M., … & Anthony, L. G. (2016). Lessons learned: Engaging culturally diverse families in neurodevelopmental disorders intervention research. Autism, 21(5), 622 – 634.

    Ratto, A. B., Reznick, J. S., & Turner-Brown, L. (2016). Cultural effects on the diagnosis of autism spectrum disorder among Latinos. Focus on Autism and Other Developmental Disabilities, 31(4), 275-283.

    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(2), 311-319.

    Soto, S., Linas, K., Jacobstein, D., Biel, M., Migdal, T., & Anthony, B. J. (2015). A review of cultural adaptations of screening tools for autism spectrum disorders. Autism, 19(6), 646-661.

    Gender Identity:

    American Academy of Pediatrics. (2005). Caring for Your School-Age Child Ages 5 to 12. American Academy of Pediatrics.

    Dewinter, J., Van Parys, H., Vermeiren, R., & van Nieuwenhuizen, C. (2017). Adolescent boys with an autism spectrum disorder and their experience of sexuality: An interpretative phenomenological analysis. Autism, 21(1), 75-82.  

    Fernandes, L. C., Gillberg, C. I., Cederlund, M., Hagberg, B., Gillberg, C., & Billstedt, E. (2016). Aspects of sexuality in adolescents and adults diagnosed with autism spectrum disorders in childhood. Journal of autism and developmental disorders, 46(9), 3155-3165.

    Grant, J. M., Mottet, L. A., Tanis, J., Herman, J. L., Harrison, J., & Keisling, M. (2010). National transgender discrimination survey report on health and health care. Washington, DC: National Center for Transgender Equality and the National Gay and Lesbian Task Force.

    Koegel, L. K., Detar, W. J., Fox, A., & Koegel, R. L. (2014). Romantic relationships, sexuality, and autism spectrum disorders. In Adolescents and adults with autism spectrum disorders (pp. 87-104). Springer New York.

    Olson, K. R., Durwood, L., DeMeules, M., & McLaughlin, K. A. (2016). Mental health of transgender children who are supported in their identities. Pediatrics, peds-2015.

    Olson-Kennedy, J., & Forcier, M. (2015). Overview of the management of gender nonconformity in children and adolescents. UpToDate November, 4.

    Pecora, L. A., Mesibov, G. B., & Stokes, M. A. (2016). Sexuality in high-functioning autism: A systematic review and meta-analysis. Journal of Autism and Developmental Disorders, 46(11), 3519-3556.

    Strang, J. F., Meagher, H., Kenworthy, L., de Vries, A. L., Menvielle, E., Leibowitz, S., … & Pleak, R. R. (2016). Initial clinical guidelines for co-occurring autism spectrum disorder and gender dysphoria or incongruence in adolescents. Journal of Clinical Child & Adolescent Psychology, 47(1), 1-11.

    Van Der Miesen, A. I., Hurley, H., & De Vries, A. L. (2016). Gender dysphoria and autism spectrum disorder: A narrative review. International Review of Psychiatry, 28(1), 70-80.

    van Schalkwyk, G. I., Klingensmith, K., & Volkmar, F. R. (2015). Gender identity and autism spectrum disorders. The Yale Journal of Biology and Medicine, 88(1), 81.


    Im, David S. (2016). Trauma as a contributor to violence in autism spectrum disorder. Journal of the American Academy of Psychiatry and the Law Online, 44(2), 184-192.

    Kerns, C. M., Newschaffer, C. J., & Berkowitz, S. J. (2015). Traumatic childhood events and autism spectrum disorder. Journal Of Autism And Developmental Disorders, 45(11), 3475-3486.

    Pfeffer, R. D. (2016). Childhood victimization in a national sample of youth with Autism Spectrum Disorders. Journal of Policy and Practice in Intellectual Disabilities, 13(4), 311-319.

    Taylor, J. L., & Gotham, K. O. (2016). Cumulative life events, traumatic experiences, and psychiatric symptomatology in transition-aged youth with autism spectrum disorder. Journal of Neurodevelopmental Disorders, 8(1), 28.

    Valenti, M., Ciprietti, T., Di Egidio, C., Gabrielli, M., Masedu, F., Tomassini, A. R., & Sorge, G. (2012). Adaptive response of children and adolescents with autism to the 2009 earthquake in L’Aquila, Italy. Journal of Autism and Developmental Disorders, 42(6), 954-960.

    Westphal, Alexander. (2016). Trauma and violence in autism. Journal of the American Academy of Psychiatry and the Law Online, 44(2), 198-199.