Abstract
Objectives
Despite the increasing prevalence of autism spectrum disorder (ASD), the professional literature provides evidence to suggest disproportionality regarding the demographic characteristics (e.g., racial, ethnic, socioeconomic status) among individuals who receive ASD diagnoses. Individuals who receive inaccurate diagnoses, or late identification of ASD, likely have decreased opportunities to receive early, evidence-based interventions within school, community, and clinical settings. This article presents an exploration of current issues regarding ASD assessments from a multicultural perspective, including a review of the literature and critical examination of commonly used assessment tools.
Methods
Authors reviewed best practice guidelines for conducting assessments through a culturally sensitive lens and provide guidance and recommendations for best practices in research and practitioner-based settings. This article presents researchers, clinical practitioners, and school-based professionals with considerations and actionable steps to better inform ASD evaluations from a culturally sensitive perspective.
Results
Despite the growth of research surrounding ASD diagnosis, there remains a dearth of unknown information regarding the approach of assessment from a culturally sensitive perspective. Most of the current research underscores disparities and discrepancies in the diagnosis of ASD, yet the causes and maintenance of such issues are neglected in the research.
Conclusions
Further research is needed to understand the causes and maintenance of the disparities in ASD assessment. Research advancement will aid practitioners in addressing barriers and work to reduce disparities in the field. Considerations for completing culturally sensitive assessments include close evaluation of the gold standard assessment tools, caregiver comfortability in reporting symptoms, and caregiver knowledge of ASD symptoms.
Similar content being viewed by others
References
Aiello, R., Ruble, L., & Esler, A. (2017). National study of school psychologists’ use of evidence-based assessment in autism spectrum disorder. Journal of Applied School Psychology, 33(1), 67–88. https://doi.org/10.1080/15377903.2016.1236307
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). American Psychiatric Publishing.
Baio, J., Wiggins, L., Christensen, D. L., Maenner, M. J., Daniels, J., Warren, Z., Kurzius-Spencer, M., Zahorodny, W., Rosenberg, C. R., White, T., Durkin, M. S., Imm, P., Nikolaou, L., Yeargin-Allsopp, M., Lee, L., Harrington, R., Lopez, M., Fitzgerald, R.T., Hewitt, A., … Dowling, N.F. (2018). Prevalence of autism spectrum disorder among children aged 8 years - autism and developmental disabilities monitoring network. Morbidity and Mortality Weekly Report MMWR Surveillance Summaries, 67(6), 1–23. https://doi.org/10.15585/mmwr.ss6706a1
Becerra, T. A., von Ehrenstein, O. S., Heck, J. E., Olsen, J., Arah, O. A., Jeste, S. S., Rodriguez, M., & Ritz, B. (2014). Autism spectrum disorders and race, ethnicity, and nativity: A population-based study. Pediatrics, 134(1), e63–e71. https://doi.org/10.1542/peds.2013-3928
Benson, N. F., Floyd, R. G., Kranzler, J. H., Eckert, T. L., Fefer, S. A., & Morgan, G. B. (2019). Test use and assessment practices of school psychologists in the United States: Findings from the 2017 national survey. Journal of School Psychology, 72, 29–48. https://doi.org/10.1016/j.jsp.2018.12.004
Bernier, R., Mao, A., & Yen, J. (2010). Psychopathology, families, and culture: Autism. Child and Adolescent Psychiatric Clinics of North America, 19(4), 855–867. https://doi.org/10.1016/j.chc.2010.07.005
Bishop-Fitzpatrick, L., & Kind, A. J. H. (2017). A scoping review of health disparities in autism spectrum disorder. Journal of Autism and Developmental Disorders, 47(11), 3380–3391. https://doi.org/10.1007/s10803-017-3251-9
Blacher, J., Cohen, S., & Azad, G. (2014). In the eye of the beholder: Reports of autism symptoms by Anglo and Latino mothers. Research in Autism Spectrum Disorders, 8(12), 1648–1656. https://doi.org/10.1016/j.rasd.2014.08.017
Bodfish, J. W., Symons, F. J., Parker, D. E., & Lewis, M. H. (2000). Varieties of repetitive behavior in autism: Comparisons to mental retardation. Journal of Autism and Developmental Disorders, 30(3), 237–243. https://doi.org/10.1023/A:1005596502855
Centers for Disease Control and Prevention (CDC). (2020a). Autism data visualization tool. U.S. Department of Health and Human Services.
Center for Disease Control and Prevention (CDC). (2020b). Spotlight on: Racial and ethnic differences in children identified with autism spectrum disorder (ASD). U.S. Department of Health and Human Services.
Clark, E., Radley, K., & Phosaly, L. (2014). Best practices in assessment and intervention of children with high functioning autism spectrum disorders. In P. L. Harrison & A. Thomas (Eds.), Best practices in school psychology: Data-based and collaborative decision making (pp. 417–431). NASP Publications.
Colombi, C., Fish, A., & Ghaziuddin, M. (2019). Utility of the ADOS-2 in children with psychiatric disorders. European Child and Adolescent Psychiatry, 29, 989–992. https://doi.org/10.1007/s00787-019-01411-8
Cuccaro, M. L., Brinkley, J., Abramson, R. K., Hall, A., Wright, H. H., Hussman, J. P., Gilbert, J. R., & Pericak-Vance, M. A. (2007). Autism in African American families: Clinical-phenotypic findings. American Journal of Medical Genetics Part B: Neuropsychiatric Genetics, 144(8), 1022–1026. https://doi.org/10.1002/ajmg.b.30535
Daley, T. C. (2004). From symptom recognition to diagnosis: Children with autism in urban India. Social Science & Medicine, 58(7), 1323–1335. https://doi.org/10.1016/s0277-9536(03)00330-7
Danseco, E. R. (1997). Parental beliefs on childhood disability: Insights on culture, child development and intervention. International Journal of Disability, Development and Education, 44(1), 41–52. https://doi.org/10.1080/0156655970440104
Davenport, M., Mazurek, M., Brown, A., & McCollom, E. (2018). A systematic review of cultural considerations and adaptation of social skills interventions for individuals with autism spectrum disorder. Research in Autism Spectrum Disorders, 52, 23–33. https://doi.org/10.1016/j.rasd.2018.05.003
Dickerson, A. S., Rahbar, M. H., Pearson, D. A., Kirby, R. S., Bakian, A. V., Bilder, D. A., Harrington, R. A., Pettygrove, S., Zahorodny, W. M., Moyé, L. A., Durkin, M., & Slay Wingate, M. (2017). Autism spectrum disorder reporting in lower socioeconomic neighborhoods. Autism, 21(4), 470–480. https://doi.org/10.1177/1362361316650091
Donohue, M. R., Childs, A. W., Richards, M., & Robins, D. L. (2019). Race influences parent report of concerns about symptoms of autism spectrum disorder. Autism, 23(1), 100–111. https://doi.org/10.1177/1362361317722030
Durkin, M. S., Maenner, M. J., Baio, J., Christensen, D., Daniels, J., Fitzgerald, R., Imm, P., Lee, L., Schieve, L. A., Braun, K. V., Wingate, M. S., & Yeargin-Allsopp, M. (2017). Autism spectrum disorder among US children (2002–2010): Socioeconomic, racial, and ethnic disparities. American Journal of Public Health, 107(11), 1818–1826. https://doi.org/10.2105/AJPH.2017.304032
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(2), 211–222. https://doi.org/10.1023/b:jadd.0000022611.80478.73
El-Ghoroury, N. H., & Krackow, E. (2012). Enhancing the identification of autism spectrum disorders via a model of culturally sensitive childhood assessment. Professional Psychology: Research and Practice, 43(3), 249–255. https://doi.org/10.1037/a0027354
Ennis-Cole, D., Durodoye, B. A., & Harris, H. L. (2013). The impact of culture on autism diagnosis and treatment: Considerations for counselors and other professionals. The Family Journal, 21(3), 279–287. https://doi.org/10.1177/1066480713476834
Falkmer, T., Anderson, K., Falkmer, M., & Horlin, C. (2013). Diagnostic procedures in autism spectrum disorders: A systematic literature review. European Child and Adolescent Psychiatry, 22(6), 329–340. https://doi.org/10.1007/s00787-013-0375-0
Fulceri, F., Narzisi, A., Apicella, F., Balboni, G., Baldini, S., Brocchini, J., Domenici, I., Cerullo, S., Igliozzi, R., Cosenza, A., Tancredi, R., Muratori, F., & Calderoni, S. (2016). Application of the RBS-R–Italian version in preschoolers with autism spectrum disorder. Research in Developmental Disabilities, 48, 43–52. https://doi.org/10.1016/j.ridd.2015.10.015
Fusar-Poli, L., Brondino, N., Politi, P., & Aguglia, E. (2020). Missed diagnoses and misdiagnoses of adults with autism spectrum disorder. European Archives of Psychiatry and Clinical Neuroscience, 1–12. https://doi.org/10.1007/s00406-020-01189-w
Gamliel-Seidman, I., & Yirmiya, N. (2018). DSM-5 diagnosis of autism spectrum disorder. In S. Goldstein & S. Ozonoff (Eds.), Assessment of autism spectrum disorder (2nd ed., pp. 146–178). The Guilford Press.
Georgiades, S., Papageorgiou, V., & Anagnostou, E. (2010). Brief report: Repetitive behaviours in Greek individuals with autism spectrum disorder. Journal of Autism and Developmental Disorders, 40(7), 903–906. https://doi.org/10.1007/s10803-009-0927-9
Gilliam, J. E. (2013). Gilliam Autism Rating Scale-Third Edition (GARS-3). Pro-Ed.
Grinker, R. R., Chambers, N., Njongwe, N., Lagman, A. E., Guthrie, W., Stronach, S., Richard, B. O., Kauchali, S., Killian, B., Chhagan, M., Yucel, F., Kudumu, M., Barker-Cummings, C., Greather, J., & Wetherby, A. M. (2012). “Communities” in community engagement: Lessons learned from autism research in South Korea and South Africa. Autism Research, 5(3), 201–210. https://doi.org/10.1002/aur.1229
Guercio, J. M., & Hahs, A. D. (2015). Applied behavior analysis and the autism diagnostic observation schedule (ADOS): A symbiotic relationship for advancements in services for individuals with autism spectrum disorders (ASDs). Behavior Analysis in Practice, 8(1), 62–65. https://doi.org/10.1007/s40617-014-0034-z
Harris, B., Barton, E. E., & Albert, C. (2014). Evaluating autism diagnostic and screening tools for cultural and linguistic responsiveness. Journal of Autism and Developmental Disorders, 44, 1275–1287. https://doi.org/10.1007/s10803-013-1991-8
Harris, B., McClain, M. B., Haverkamp, C. R., Cruz, R. A., Benallie, K. J., & Benney, C. M. (2019). School-based assessment of autism spectrum disorder among culturally and linguistically diverse children. Professional Psychology: Research and Practice, 50(5), 323–332. https://doi.org/10.1037/pro0000256
Harrison, A. J., Long, K. A., Tommet, D. C., & Jones, R. N. (2017). Examining the role of race, ethnicity, and gender on social and behavioral ratings within the Autism Diagnostic Observation Schedule. Journal of Autism and Developmental Disorders, 47(9), 2770–2782. https://doi.org/10.1007/s10803-017-3176-3
Herlihy, L. E., Brooks, B., Dumont-Mathieu, T., Barton, M. L., Fein, D., Chen, C. M., & Robins, D. L. (2014). Standardized screening facilitates timely diagnosis of autism spectrum disorders in a diverse sample of low-risk toddlers. Journal of Developmental and Behavioral Pediatrics, 35(2), 85–92. https://doi.org/10.1097/DBP.0000000000000014
Inada, N., Ito, H., Yasunaga, K., Kuroda, M., Iwanaga, R., Hagiwara, T., Tani, I., Yukihiro, R., Uchiyama, T., Ogasahara, K., Hara, K., Inoue, M., Murakami, T., Someki, F., Nakamura, K., Sugiyama, T., Uchida, H., Ichikawa, H., Kawakubo, Y., … Tsujii, M. (2015). Psychometric properties of the RBS-R for individuals with autism spectrum disorder in Japan. Research in Autism Spectrum Disorders, 15–16, 60–68. https://doi.org/10.1016/j.rasd.2015.01.002
Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2(3), 217–250.
Kästel, I. S., Vllasaliu, L., Wellnitz, S., Cholemkery, H., Freitag, C. M., & Bast, N. (2020). Repetitive behavior in children and adolescents: Psychometric properties of the German version of the Repetitive Behavior Scale-Revised. Journal of Autism and Developmental Disorders, 51(4), 1224–1237. https://doi.org/10.1007/s10803-020-04588-z
Kuriakose, S., & Shalev, R. (2016). Early diagnostic assessment. In R. Lang, T. B. Hancock, & N. N. Singh (Eds.), Early intervention for young children with autism spectrum disorder (pp. 15–46). Springer International Publishing. https://doi.org/10.1007/978-3-319-30925-5_2.
Lai, M. C., & Baron-Cohen, S. (2015). Identifying the lost generation of adults with autism spectrum conditions. The Lancet Psychiatry, 2(11), 1013–1027. https://doi.org/10.1016/S2215-0366(16)30301-7
La Roche, M. J., Bush, H. H., & D’Angelo, E. (2018). The assessment and treatment of autism spectrum disorder: A cultural examination. Practice Innovations, 3(2), 107. https://doi.org/10.1037/pri0000067
Levy, S. E., Giarelli, E., Lee, L. C., Schieve, L. A., Kirby, R. S., Cunniff, C., Joyce, N., Judy, R., & Rice, C. E. (2010). Autism spectrum disorder and co-occurring developmental, psychiatric, and medical conditions among children in multiple populations of the United States. Journal of Developmental and Behavioral Pediatrics, 31(4), 267–275. https://doi.org/10.1097/DBP.0b013e3181d5d03b
Liss, M., Harel, B., Fein, D., Allen, D., Dunn, M., Feinstein, C., Morris, R., Waterhouse, L., & Rapin, I. (2001). Predictors and correlates of adaptive functioning in children with developmental disorders. Journal of Autism and Developmental Disorders, 31(2), 219–230
Lopez, K., Magaña, S., Morales, M., & Iland, E. (2019). Parents taking action: Reducing disparities through a culturally informed intervention for Latinx parents of children with autism. Journal of Ethnic and Cultural Diversity in Social Work, 28(1), 31–49. https://doi.org/10.1080/15313204.2019.1570890
Lord, C., Rutter, M., DiLavore, P., Risi, S., Gotham, K., & Bishop, S. L. (2012). Autism Diagnostic Observation Schedule – Second Edition (ADOS-2). Western Psychological Services.
Maenner, M. J., Shaw, K. A., Baio, J., Washington, A., Patrick, M., DiRienzo, M., Christensen, L., Wiggins, L. D., Pettygrove, S., Andrews, J. G., Lopez, M., Hudson, A., Baroud, T., Schwenk, Y., White, T., Rosenberg, C. R., Lee, L., Harrington, R. A., Hutson, & Dietz, P. M. (2020). Prevalence of autism spectrum disorder among children aged 8 years — autism and developmental disabilities monitoring network. Morbidity and Mortality Weekly Report (MMWR) Surveillance Summaries, 69(4), 1–12
Magaña, S., & Smith, L. (2013). The use of the Autism Diagnostic Interview – Revised with a Latino population of adolescents and adults with autism. Journal of Autism and Developmental Disorders, 43(5), 1098–1105. https://doi.org/10.1007/s10803-012-1652-3
Malcolm, K. K. (2014). Review of the Childhood Autism Rating Scale, Second Edition. In J. F. Carlson, K. F. Geisinger, & J. L. Jonson (Eds.), The nineteenth mental measurements yearbook (pp. 143–146). Buros Center for Testing.
Mandell, D. S., Ittenbach, R. F., Levy, S. E., & Pinto-Martin, J. A. (2007). Disparities in diagnoses received prior to a diagnosis of autism spectrum disorder. Journal of Autism and Developmental Disorders, 37(9), 1795–1802. https://doi.org/10.1007/s10803-006-0314-8
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. https://doi.org/10.1002/mrdd.20061
Mandell, D. S., Wiggins, L. D., Carpenter, L. A., Daniels, J., DiGuiseppi, C., Durkin, M. S., Giarelli, E., Morrier, M. J., Nicholas, J. S., Pinto-Martin, J. A., Shattuck, P. T., Thomas, K. C., Yeargin-Allsopp, M., & Kirby, R. S. (2009). Racial/ethnic disparities in the identification of children with autism spectrum disorders. American Journal of Public Health, 99(3), 493–498. https://doi.org/10.2105/AJPH.2007.131243
Martínez-González, A. E., & Piqueras, J. A. (2018). Validation of RBS-R in Spanish-speakers participants with autism spectrum disorder. Journal of Autism and Developmental Disorders, 48(1), 198–208. https://doi.org/10.1007/s10803-017-3276-0
Matheis, M., Matson, J. L., Hong, E., & Cervantes, P. E. (2019). Gender differences and similarities: Autism symptomatology and developmental functioning in young children. Journal of Autism and Developmental Disorders, 49(3), 1219–1231. https://doi.org/10.1007/s10803-018-3819-z
McMahon, C. R., Malesa, E. E., Yoder, P. J., & Stone, W. L. (2007). Parents of children with autism spectrum disorders have merited concerns about their later-born infants. Research and Practice for Persons with Severe Disabilities, 32(2), 154–160
Noland, R. M., & Gabriels, R. L. (2004). Screening and identifying children with autism spectrum disorders in the public school system: The development of a model process. Journal of Autism and Developmental Disorders, 34(3), 265–277. https://doi.org/10.1023/B:JADD.0000029549.84385.44
Overton, T., Fielding, C., & Garcia de Alba, R. (2007). Differential diagnosis of Hispanic children referred for autism spectrum disorders: Complex issues. Journal of Autism and Developmental Disorders, 37(10), 1996–2007. https://doi.org/10.1007/s10803-006-0349-x
Ozonoff, S., Goodlin-Jones, B. L., & Solomon, M. (2005). Evidence-based assessment of autism spectrum disorders in children and adolescents. Journal of Clinical Child and Adolescent Psychology, 34(3), 523–540. https://doi.org/10.1207/s15374424jccp3403_8
Parke, R. D., & Buriel, R. (2006). Socialization in the family: Ethnic and ecological perspectives. In W. Damon, R. Lerner, & N. Eisenberg (Eds.), Handbook of child psychology: Social, emotional and personality development (pp. 429–504). Wiley.
Perepa, P. (2014). Cultural basis of social ‘deficits’ in autism spectrum disorders. European Journal of Special Needs Education, 29(3), 313–326. https://doi.org/10.1080/08856257.2014.908024
Post, D. M., Cegala, D. J., & Marinelli, T. M. (2001). Teaching patients to communicate with physicians: The impact of race. Journal of the National Medical Association, 93(1), 6
Ratto, A. B., Anthony, B. J., Kenworthy, L., Armour, A. C., Dudley, K., & Anthony, L. G. (2015). Are non-intellectually disabled black youth with ASD less impaired on parent report than their white peers? Journal of Autism and Developmental Disorders, 46(3), 773–781. https://doi.org/10.1007/s10803-015-2614-3
Raulston, T. J., & Machalicek, W. (2017). Early intervention for repetitive behavior in autism spectrum disorder: A conceptual model. Journal of Developmental and Physical Disabilities, 30(1), 89–109. https://doi.org/10.1007/s10882-017-9566-9
Rogers-Adkinson, D. L., Ochoa, T. A., & Delgado, B. (2003). Developing cross-cultural competence: Serving families of children with significant developmental needs. Focus on Autism and Other Developmental Disabilities, 18(1), 4–8. https://doi.org/10.1177/108835760301800102
Rutter, M., Le Couteur, A., & Lord, C. (2003). Autism Diagnostic Interview – Revised (ADI-R). Western Psychological Services.
Rutter, M., & Lockyer, L. (1967). A five-to-fifteen-year follow-up study of infantile psychosis: I. Description of sample. The British Journal of Psychiatry, 113(504), 1169–1182
Schopler, E., Van Bourgondien, M. E., Wellman, G. J., & Love, S. R. (2010). The Childhood Autism Rating Scale, Second Edition (CARS2). Western Psychological Services.
Schwartz, I. S., & Davis, C. A. (2014). Best practices in early identification and services for children with autism spectrum disorders. In P. L. Harrison & A. Thomas (Eds.), Best practices in school psychology: Data-based and collaborative decision making (pp. 405–416). NASP Publications.
Sell, N. K., Giarelli, E., Blum, N., Hanlon, A. L., & Levy, S. E. (2012). A comparison of autism spectrum disorder DSM-IV criteria and associated features among African American and white children in Philadelphia County. Disability and Health Journal, 5(1), 9–17. https://doi.org/10.1016/j.dhjo.2011.08.002
Simek, A. N., & Wahlberg, A. C. (2011). Test review: Autism spectrum rating scales. Journal of Psychoeducational Assessment, 29(2), 191–195. https://doi.org/10.1177/0734282910375408
Tek, S., & Landa, R. J. (2012). Differences in autism symptoms between minority and non-minority toddlers. Journal of Autism and Developmental Disorders, 42(9), 1967–1973. https://doi.org/10.1007/s10803-012-1445-8
Tincani, M., Travers, J., & Boutot, A. (2009). Race, culture, and autism spectrum disorder: Understanding the role of diversity in successful educational interventions. Research and Practice for Persons with Severe Disabilities, 34(3–4), 81–90
Travers, J. C., Tincani, M., & Krezmien, M. P. (2013). A multiyear national profile of racial disparity in autism identification. The Journal of Special Education, 47(1), 41–49. https://doi.org/10.1177/0022466911416247
Vaughan, C. A. (2011). Review of Childhood Autism Rating Scale (2nd ed.). Journal of Psychoeducational Assessment, 29(5), 489–493. https://doi.org/10.1177/0734282911400873
Welterlin, A., & LaRue, R. H. (2007). Serving the needs of immigrant families of children with autism. Disability & Society, 22(7), 747–760. https://doi.org/10.1080/09687590701659600
Wilder, L. K., Dyches, T. T., Obiakor, F. E., & Algozzine, B. (2004). Multicultural perspectives on teaching students with autism. Focus on Autism and Other Developmental Disabilities, 19(2), 105–113. https://doi.org/10.1177/10883576040190020601
Wing, L. (1980). Childhood autism and social class: A question of selection? The British Journal of Psychiatry, 137(5), 410–417. https://doi.org/10.1192/bjp.137.5.410
Zhang, J., Wheeler, J. J., & Richey, D. (2006). Cultural validity in assessment instruments for children with autism from a Chinese cultural perspective. International Journal of Special Education, 21(1), 109–114
Author information
Authors and Affiliations
Contributions
MMS was the primary author who designed and wrote the paper. NB collaborated writing the paper and conducted additional research specifically pertaining to caregiver understanding of ASD symptomology. KGR collaborated with organization, structure of the paper, and editing the final manuscript.
Corresponding author
Ethics declarations
Conflict of Interest
The authors declare no competing interests.
Additional information
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Rights and permissions
About this article
Cite this article
Stoll, M.M., Bergamo, N. & Rossetti, K.G. Analyzing Modes of Assessment for Children with Autism Spectrum Disorder (ASD) Using a Culturally Sensitive Lens. Adv Neurodev Disord 5, 233–244 (2021). https://doi.org/10.1007/s41252-021-00210-0
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s41252-021-00210-0