This module includes a video Dr. Lisa Fortuna, MD, MPH discussing cultural considerations and barriers to care.
VIDEO
Lucia Morales, LCSW, discusses barriers to care for Spanish speaking patients and families.
VIDEO
Resources:
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.
Trauma:
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.