Abstract
Social communication, like all inter-human behaviors, are highly affected by an individual’s intersectional identities and memberships of diverse communities. The current systematic literature review investigated the reporting practices of participant demographics and the extent to which under-represented autistic groups were included in social communication intervention studies in the 2020 National Clearinghouse on Autism Evidence and Practice report. Results show inconsistencies and gaps in reporting participant variables as well as a general lack of representation of diverse autistic communities in social communication intervention research. The results highlight the limitations of current racial categories and considerations for complex intersectional identities. Recommendations for future researchers are also discussed.
Similar content being viewed by others
Data Availability
All data analysed in this review are included in this published article as supplementary materials.
References
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). American Psychiatric Association. https://doi.org/10.1176/appi.books.9780890425596
American Speech-Language-Hearing Association. (2023). Components of social communication. https://www.asha.org/practice-portal/clinical-topics/social-communication-disorder/components-of-social-communication/
Appelbaum, M., Cooper, H., Kline, R. B., Mayo-Wilson, E., Nezu, A. M., & Rao, S. M. (2018). Journal article reporting standards for quantitative research in psychology: The APA Publications and Communications Board task force report. American Psychologist, 73, 3–25. https://doi.org/10.1037/amp000019
Ault, S., Breitenstein, S. M., Tucker, S., Havercamp, S. M., & Ford, J. L. (2021). Caregivers of children with autism spectrum disorder in rural areas: A literature review of mental health and social support. Journal of Pediatric Nursing, 61, 229–239. https://doi.org/10.1016/j.pedn.2021.06.009
Aylward, B. S., Gal-Szabo, D. E., & Taraman, S. (2021). Racial, ethnic, and sociodemographic disparities in diagnosis of children with autism spectrum disorder. Journal of Developmental and Behavioral Pediatrics, 42, 682–689. https://doi.org/10.1097/DBP.0000000000000996
Bak, M. Y. S., Dueñas, A. D., Avendaño, S. M., Stanley, T., & Graham, A. C. (2021). Tact instruction for children with autism spectrum disorder: A review. Autism and Developmental Language Impairments, 6, 1–22. https://doi.org/10.1177/2396941521999010
Baumann, A. A., & Cabassa, L. J. (2020). Reframing implementation science to address inequities in healthcare delivery. BMC Health Services Research, 20, 190. https://doi.org/10.1186/s12913-020-4975-3
Bernal, G., Jiménez-Chafey, M. I., & Domenech Rodríguez, M. M. (2009). Cultural adaptation of treatments: A resource for considering culture in evidence-based practice. Professional Psychology: Research and Practice, 40, 361–368. https://doi.org/10.1037/a0016401
Bogdan, R., & Biklen, S. K. (1998). Qualitative research for education: An introduction to theory and methods (3rd ed.) Allyn and Bacon.
Boroditsky, L., Ham, W., & Ramscar, M. (2002). What is universal event perception? Comparing English and Indonesian speakers. Proceedings of the Annual Meeting of the Cognitive Science Society, 24. Retrieved from https://escholarship.org/uc/item/5jd5w5c8
Buchanan, N. T., Perez, M., Prinstein, M. J., & Thurston, I. B. (2021). Upending racism in psychological science: Strategies to change how science is conducted, reported, reviewed, and disseminated. American Psychologist, 76, 1097–1112. https://doi.org/10.1037/amp0000905
Burrows, C. A., Grzadzinski, R. L., Donovan, K., Stallworthy, I. C., Rutsohn, J., St. John, T., Marrus, N., Parish-Morris, J., MacIntyre, L., Hampton, J., Pandey, J., Shen, M. D., Botteron, K. N., Estes, A. M., Dager, S. R., Hazlett, H. C., Pruett, J. R., Schultz, R. T., Zwaigenbaum, L., Truong, K. N., Piven, P. & Elison, J. T. (2022). A data driven approach in an unbiased sample reveals equivalent sex ratio of autism spectrum disorder associated impairment in early childhood. Biological Psychiatry, 92(8), 654–662. https://doi.org/10.1016/j.biopsych.2022.05.027
Cartledge, G., & Loe, S. A. (2001). Cultural diversity and social skill instruction. Exceptionality, 9, 33–46. https://doi.org/10.1080/09362835.2001.9666990
Cascio, M. A., Weiss, J. A., & Racine, E. (2021). Making autism research inclusive by attending to intersectionality: A review of the research ethics literature. Review Journal of Autism and Developmental Disorders, 8, 22–36. https://doi.org/10.1007/s40489-020-00204-z
Catrone, R. G., Baires, N. A., Martin, M. R., & Brown-Hollie, J. P. (2023). An intersectional examination of disability and race models in behavior-analytic practice. Behavior and Social Issues, 32, 152–181. https://doi.org/10.1007/s42822-022-00116-z
Chkhaidze, A., Buyruk, P., & Boroditsky, L. (2019). Linguistic metaphors shape attitudes towards immigration. Proceedings of the Annual Meeting of the Cognitive Science Society, 43. Retrieved from https://escholarship.org/uc/item/1xf1t3vv
Cohen, L., Manion, L., & Morrison, K. (2007). Research methods in education (6th ed.). Routledge. https://doi.org/10.4324/9780203029053
Crenshaw, K. (1991). Mapping the margins: Intersectionality, identity politics, and violence against women of color. Stanford Law Review, 43, 1241–1299.
Cycyk, L. M., De Anda, S., Moore, H., & Huerta, L. (2021). Cultural and linguistic adaptations of early language interventions: Recommendations for advancing research and practice. American Journal of Speech-Language Pathology, 30, 1224–1246. https://doi.org/10.1044/2020_AJSLP-20-00101
de Vries, P. J. (2016). Thinking globally to meet local needs: Autism spectrum disorders in Africa and other low-resource environments. Current Opinion in Neurology, 29, 130–136. https://doi.org/10.1097/WCO.0000000000000297
DeLucia-Waack, J. L., and Donigian, J. (2004). The practice of multicultural group work: Visions and perspectives from the field. Thomson Brooks/Cole.
Dingfelder, H. E., & Mandell, D. S. (2011). Bridging the research-to-practice gap in autism intervention: An application of diffusion of innovation theory. Journal of Autism and Developmental Disorders, 41, 597–609. https://doi.org/10.1007/s10803-010-1081-0
Dunn, K., Rydzewska, E., MacIntyre, C., Rintoul, J., & Cooper, S.-A. (2019). The prevalence and general health status of people with intellectual disabilities and autism co-occurring together: A total population study: Co-occurring intellectual disabilities and autism. Journal of Intellectual Disability Research, 63, 277–285. https://doi.org/10.1111/jir.12573
Dynia, J. M., Walton, K. M., Brock, M. E., & Tiede, G. (2020). Early childhood special education teachers’ use of evidence-based practices with children with autism spectrum disorder. Research in Autism Spectrum Disorders, 77, 101606. https://doi.org/10.1016/j.rasd.2020.101606
Fuller, E. A., & Kaiser, A. P. (2020). The effects of early intervention on social communication outcomes for children with autism spectrum disorder: A meta-analysis. Journal of Autism and Developmental Disorders, 50, 1683–1700. https://doi.org/10.1007/s10803-019-03927-z
Garcia, N. M., López, N., & Vélez, V. N. (2018). QuantCrit: Rectifying quantitative methods through critical race theory. Race Ethnicity and Education, 21, 149–157. https://doi.org/10.1080/13613324.2017.1377675
Gena, A. (2006). The effects of prompting and social reinforcement on establishing social interactions with peers during the inclusion of four children with autism in preschool. International Journal of Psychology, 41, 541–554. https://doi.org/10.1080/00207590500492658
Ghasemi, E., Majdzadeh, R., Rajabi, F., Vedadhir, A., Negarandeh, R., Jamshidi, J., Takian, A., & Faraji, Z. (2021). Applying intersectionality in designing and implementing health interventions: A scoping review. BMC Public Health, 21,1407. https://doi.org/10.1186/s12889-021-11449-6
Gross, M. C., & Tager-Flusberg, H. (2022). Expanding contexts for exploring the intersection of autism and bilingualism. Linguistic Approaches to Bilingualism, 12(1), 48–53. https://doi.org/10.1075/lab.21047.gro
Gunning, C., Holloway, J., Fee, B., Breathnach, Ó., Bergin, C. M., Greene, I., & Ní Bheoláin, R. (2019). A systematic review of generalization and maintenance outcomes of social skills intervention for preschool children with autism spectrum disorder. Review Journal of Autism and Developmental Disorders, 6, 172–199. https://doi.org/10.1007/s40489-019-00162-1
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, 2770–2782. https://doi.org/10.1007/s10803-017-3176-3
Hays, P. A. (2022). Addressing cultural complexities in counseling and clinical practice: An intersectional approach. (4th ed.). American Psychological Association. https://doi.org/10.1037/0000277-001
Hume, K., Steinbrenner, J. R., Odom, S. L., Morin, K. L., Nowell, S. W., Tomaszewski, B., Szendrey, S., McIntyre, N. S., Yücesoy-Özkan, S., & Savage, M. N. (2021). Evidence-based practices for children, youth, and young adults with autism: Third generation review. Journal of Autism and Developmental Disorders, 51, 4013–4032. https://doi.org/10.1007/s10803-020-04844-2
Kaiser, K., Villalobos, M. E., Locke, J., Iruka, I. U., Proctor, C., & Boyd, B. (2022). A culturally grounded autism parent training program with Black parents. Autism, 26, 716–726. https://doi.org/10.1177/13623613211073373
Kasari, C., Kaiser, A., Goods, K., Nietfeld, J., Mathy, P., Landa, R., Murphy, S., & Almirall, D. (2014). Communication interventions for minimally verbal children with autism: A sequential multiple assignment randomized trial. Journal of the American Academy of Child & Adolescent Psychiatry, 53, 635–646. https://doi.org/10.1016/j.jaac.2014.01.019
Koegel, L. K., Bryan, K. M., Su, P. L., Vaidya, M., & Camarata, S. (2020). Definitions of nonverbal and minimally verbal in research for autism: A systematic review of the literature. Journal of Autism and Developmental Disorders, 50, 2957–2972. https://doi.org/10.1007/s10803-020-04402-w
Kuhn, T. S. (1996). The structure of scientific revolutions (3rd ed.). University of Chicago.
Lauritsen, M. B., Astrup, A., Pedersen, C. B., Obel, C., Schendel, D. E., Schieve, L., Yeargin-Allsopp, M., & Parner, E. T. (2014). Urbanicity and autism spectrum disorders. Journal of Autism and Developmental Disorders, 44, 394–404. https://doi.org/10.1007/s10803-013-1875-y
Lee, J. D., Meadan, H., Sands, M. M., Terol, A. K., Martin, M. R., & Yoon, C. D. (2023). The Cultural Adaptation Checklist (CAC): Quality indicators for cultural adaptation of intervention and practice. International Journal of Developmental Disabilities. Advance online publication. https://doi.org/10.1080/20473869.2023.2176966
Li, Z., Yang, L., Chen, H., Fang, Y., Zhang, T., Yin, X., Man, J., Yang, X., & Lu, M. (2022). Global, regional and national burden of autism spectrum disorder from 1990 to 2019: Results from the Global Burden of Disease Study 2019. Epidemiology and Psychiatric Sciences, 31, e33. https://doi.org/10.1017/S2045796022000178
Lorah, E. R., Tincani, M., Dodge, J., Gilroy, S., Hickey, A., & Hantula, D. (2013). Evaluating picture exchange and the iPadTM as a speech generating device to teach communication to young children with autism. Journal of Developmental and Physical Disabilities, 25, 637–649. https://doi.org/10.1007/s10882-013-9337-1
MacNaughton, G., Rolfe, S. A., & Siraj-Blatchford, I. (2001). Doing early childhood research: International perspectives on theory and practice (1st ed.). Routledge. https://doi.org/10.4324/9781003115397
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
Mallipeddi, N. V., & VanDaalen, R. A. (2022). Intersectionality within critical autism studies: A narrative review. Autism in Adulthood, 4, 281–289. https://doi.org/10.1089/aut.2021.0014
Manzo, R. D., Brazil-Cruz, L., Flores, Y. G., & Rivera-Lopez, H. (2020). Cultura y Corazón: A decolonial methodology for community engaged research. University of Arizona Press.
Marsh, A. A., Elfenbein, H. A., & Ambady, N. (2003). Nonverbal “accents”: Cultural differences in facial expressions of emotion. Psychological Science, 14, 373–376. https://doi.org/10.1111/1467-9280.24461
Maye, M., Boyd, B. A., Martínez-Pedraza, F., Halladay, A., Thurm, A., & Mandell, D. S. (2022). Biases, barriers, and possible solutions: Steps towards addressing autism researchers’ under-engagement with racially, ethnically, and socioeconomically diverse communities. Journal of Autism and Developmental Disorders, 52, 4206–4211. https://doi.org/10.1007/s10803-021-05250-y
Morgan, E. H., Rodgers, R., & Tschida, J. (2022). Addressing the intersectionality of race and disability to improve autism care. Pediatrics, 149(s4), e2020049437M. https://doi.org/10.1542/peds.2020-049437M
Neely, L. C., Ganz, J. B., Davis, J. L., Boles, M. B., Hong, E. R., Ninci, J., & Gilliland, W. D. (2016). Generalization and maintenance of functional living skills for individuals with autism spectrum disorder: A review and meta-analysis. Review Journal of Autism and Developmental Disorders, 3, 37–47. https://doi.org/10.1007/s40489-015-0064-7
Nicolaidis, C., Raymaker, D., McDonald, K. M., Dern, S., Asgkenazy, E., Boisclair, C., Robertson, S., & Baggs, A. (2011). Collaboration strategies in nontraditional community-based participatory research partnerships: Lessons from an academic-community partnership with autistic self-advocates. Progress in Community Health Partnerships: Research, Education, and Action, 5, 143–150. https://doi.org/10.1353/cpr.2011.0022
Papoudi, D., Jørgensen, C. R., Guldberg, K., & Meadan, H. (2021). Perceptions, experiences, and needs of parents of culturally and linguistically diverse children with autism: A scoping review. Review Journal of Autism and Developmental Disorders, 8, 195–212. https://doi.org/10.1007/s40489-020-00210-1
Patton, M. Q. (1999). Enhancing the quality and credibility of qualitative analysis. Health Services Research, 34(5 Pt 2), 1189.
Paynter, J. M., & Keen, D. (2015). Knowledge and use of intervention practices by community-based early intervention service providers. Journal of Autism and Developmental Disorders, 45, 1614–1623. https://doi.org/10.1007/s10803-014-2316-2
Prizant, B. M., & Wetherby, A. M. (2005). Critical issues in enhancing communication abilities for persons with autism spectrum disorders. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders: Assessment, interventions, and policy (pp. 925–945). John Wiley & Sons. https://doi.org/10.1002/9780470939352.ch10
Rice, C. E., Carpenter, L. A., Morrier, M. J., Lord, C., DiRienzo, M., Boan, A., Skowya, C., Fusco, A., Baio, J., Esler, A., Zahorodny, W., Hobson, N., Mars, A., Thurm, A., Bishop, S., & Wiggins, L. D. (2022). Defining in detail and evaluating reliability of DSM-5 criteria for autism spectrum disorder (ASD) among children. Journal of Autism Developmental Disorders, 52, 5308–5320. https://doi.org/10.1007/s10803-021-05377-y
Roux, A. M., Shattuck, P. T., Rast, J. E., Rava, J. A., & Anderson, K. (2015). National autism indicators report: Transition into young adulthood. Life Course Outcomes Research Program, A. J. Drexel Autism Institute, Drexel University. https://drexel.edu/~/media/Files/autismoutcomes/publications/National Autism Indicators Report - July 2015.ashx
Santhanam, S. P., & Hewitt, L. E. (2021). Perspectives of adults with autism on social communication intervention. Communication Disorders Quarterly, 42, 156–165. https://doi.org/10.1177/1525740120905501
Sassu, K. A., & Volkmar, F. R. (2023). Autism and intersectionality: Considerations for school-based practitioners. Psychology in the Schools, 60, 408–418. https://doi.org/10.1002/pits.22757
Shyman, E. (2016). The reinforcement of ableism: Normality, the medical model of disability, and humanism in applied behavior analysis and ASD. Intellectual and Developmental Disabilities, 54, 366–376. https://doi.org/10.1352/1934-9556-54.5.366
Smedley, A., & Smedley, B. D. (2005). Race as biology is fiction, racism as a social problem is real: Anthropological and historical perspectives on the social construction of race. American Psychologist, 60, 16–26. https://doi.org/10.1037/0003-066X.60.1.16
Stedman, A., Taylor, B., Erard, M., Peura, C., & Siegel, M. (2019). Are children severely affected by autism spectrum disorder underrepresented in treatment studies? An analysis of the literature. Journal of Autism and Developmental Disorders, 49, 1378–1390. https://doi.org/10.1007/s10803-018-3844-y
Stein, G. L., & Guzman, L. E. (2015). Prevention and intervention research with Latino families: A translational approach. Family Process, 54, 280–292. https://doi.org/10.1111/famp.12143
Steinbrenner, J. R., McIntyre, N., Rentschler, L. F., Pearson, J. N., Luelmo, P., Jaramillo, M. E., Boyd, B. A., Wong, C., Nowell, S. W., Odom, S. L., & Hume, K. A. (2022). Patterns in reporting and participant inclusion related to race and ethnicity in autism intervention literature: Data from a large-scale systematic review of evidence-based practices. Autism, 26, 2026–2040. https://doi.org/10.1177/13623613211072593
Steinbrenner, J. R., Hume, K., Odom, S. L., Morin, K. L., Nowell, S. W., Tomaszewski, B., Szendrey, S., McIntyre, N. S., Yücesoy-Özkan, S., & Savage, M. N. (2020). Evidence-based practices for children, youth, and young adults with autism. The University of North Carolina at Chapel Hill, Frank Porter Graham Child Development Institute, National Clearinghouse on Autism Evidence and Practice Review Team. https://fpg.unc.edu/publications/evidence-based-practices-children-youth-and-young-adults-autism-spectrum-disorder-1
Strang, J. F., van der Miesen, A. I., Caplan, R., Hughes, C., daVanport, S., & Lai, M. C. (2020). Both sex and gender-related factors should be considered in autism research and clinical practice. Autism, 24, 539–543. https://doi.org/10.1177/1362361320913192
Thapar, A., & Rutter, M. (2021). Genetic advances in autism. Journal of Autism and Developmental Disorders, 51, 4321–4332. https://doi.org/10.1007/s10803-020-04685-z
Vivanti, G. (2019). Towards a culturally informed approach to implementing autism early intervention: A commentary on Ramseur II et al., 2019. Pediatric Medicine, 2, 20–20. https://doi.org/10.21037/pm.2019.06.01
West, E. A., Travers, J. C., Kemper, T. D., Liberty, L. M., Cote, D. L., McCollow, M. M., & Stansberry Brusnahan, L. L. (2016). Racial and ethnic diversity of participants in research supporting evidence-based practices for learners with autism spectrum disorder. The Journal of Special Education, 50, 151–163. https://doi.org/10.1177/0022466916632495
Wetherby, A. M., Watt, N., Morgan, L., & Shumway, S. (2007). Social communication profiles of children with autism spectrum disorders late in the second year of life. Journal of Autism and Developmental Disorders, 37, 960–975. https://doi.org/10.1007/s10803-006-0237-4
Williams, D. R., Lavizzo-Mourey, R., & Warren, R. C. (1994). The concept of race and health status in America. Public Health Reports, 109, 26–41.
Wong, C., Odom, S. L., Hume, K. A., Cox, A. W., Fettig, A., Kucharczyk, S., Brock, M. E., Plavnick, J. B., Fleury, V. P., & Schultz, T. R. (2015). Evidence-based practices for children, youth, and young adults with autism spectrum disorder: A comprehensive review. Journal of Autism and Developmental Disorders, 45, 1951–1966. https://doi.org/10.1007/s10803-014-2351-z
Yuki, M., Maddux, W. W., & Masuda, T. (2007). Are the windows to the soul the same in the east and west? Cultural differences in using the eyes and mouth as cues to recognize emotions in Japan and the United States. Journal of Experimental Social Psychology, 43, 303–311. https://doi.org/10.1016/j.jesp.2006.02.004
Zebrowitz, L. A., Kikuchi, M., & Fellous, J.-M. (2010). Facial resemblance to emotions: Group differences, impression effects, and race stereotypes. Journal of Personality and Social Psychology, 98, 175–189. https://doi.org/10.1037/a0017990
Zeidan, J., Fombonne, E., Scorah, J., Ibrahim, A., Durkin, M. S., Saxena, S., Yusuf, A., Shih, A., & Elsabbagh, M. (2022). Global prevalence of autism: A systematic review update. Autism Research, 15, 778–790. https://doi.org/10.1002/aur.2696
Zuckerman, K. E., Lindly, O. J., Reyes, N. M., Chavez, A. E., Macias, K., Smith, K. N., & Reynolds, A. (2017). Disparities in diagnosis and treatment of autism in Latino and non-Latino White families. Pediatrics, 139, e20163010. https://doi.org/10.1542/peds.2016-3010
Acknowledgements
The authors would like to thank Sunny Yi Xin and Natalie Dumas for their contribution. The authors use identity-first language in this manuscript following recommendations from autistic communities and the American Psychological Association.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Ethical Approval
This study does not involve any human participants.
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.
Supplementary Information
Below is the link to the electronic supplementary material.
Rights and permissions
Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.
About this article
Cite this article
Bak, M.Y.S., Dueñas, A.D., Reilly, A.M. et al. The Demographics of Autistic Individuals in Social Communication Evidence-Based Practice: a Systematic Review. Rev J Autism Dev Disord (2023). https://doi.org/10.1007/s40489-023-00424-z
Received:
Accepted:
Published:
DOI: https://doi.org/10.1007/s40489-023-00424-z