Date Presented 03/21/24
Our qualitative study aimed to understand how families of autistic girls experienced the autism diagnostic odyssey, with a particular focus on families from minoritized racial and ethnic backgrounds.
Primary Author and Speaker: Amber M. Angell
Contributing Authors: Daniella Floríndez, Marshae Franklin, Jennifer Lopez, Alexis Rodriguez, Elinor Taylor, Jessica Rios, Melanie Guzman
PURPOSE: The purpose of this qualitative study is to understand how families of autistic girls experienced the ‘diagnostic odyssey’ (i.e., pathway to an autism diagnosis and services), including girls from minoritized racial and ethnic groups who are understudied in autism research.
DESIGN: We conducted an 8-month qualitative research study.
METHOD: We used purposive sampling to recruit 21 caregivers from 18 families of autistic girls. Although we did not seek to recruit any particular racial or ethnic groups, we recruited a diverse sample (i.e., largely non-white) from a Los Angeles county regional center. We conducted one semi-structured interview with each family (10 in English, 8 in Spanish) between September 2021 and April 2022. We used narrative and thematic analysis.
FINDINGS: Our analysis yielded four themes: 1) Information Gathering and Sharing was an important part of the process, but it appeared to be particularly important for Latine families, and even more so for Spanish speaking Latine families. 2) Systemic Barriers slowed or hindered the diagnostic process. 3) Family and Community Response to ‘Behaviors,’ including ‘bad’ and/or ‘odd’ behaviors, were impacted by culture and fear for the safety of the minoritized girls. 4) Intergenerational Experiences related to autistic traits, such as encouraging children to mask their autistic traits, were intended to be protective but may have contributed to masking and/or denial of autism in other family members.
CONCLUSION: Given the calls for increased surveillance of diversity, equity, and inclusion, this paper provides timely considerations for occupational therapy providers working with autistic girls and their families. Understanding barriers at multiple levels, and utilizing a family-centered, culturally-sensitive lens, is critical for helping to reduce autism disparities in girls, particularly those from minoritized racial and ethnic groups.
References
Lappé, M., Lau, L., Dudovitz, R. N., Nelson, B. B., Karp, E. A., & Kuo, A. A. (2018). The diagnostic odyssey of autism spectrum disorder. Pediatrics, 141, S272–S279. https://doi. org/10.1542/peds.2016-4300C
Driver, B., & Chester, V. (2021). The presentation, recognition and diagnosis of autism in women and girls. Advances in Autism, 7(3), 194–207. https://doi.org/10.1108/AIA-12-2019-0050
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
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(5). https://doi.org/10.1542/peds.2016-3010.e20163010.
