Abstract
Amid calls for inclusion of autistic people in research, we present findings from our community-engaged study on the experiences of families of autistic girls, who experience disparities in autism identification, and show how the Autistic Lived Experience Collaborators (ALEC) in the Disparity Reduction and Equity in Autism Services (DREAmS) Lab influenced our findings. In Part 1 of our multimethod study, 21 caregivers completed interviews and survey questions. In Part 2, 10 Hispanic/Latino caregivers from Part 1 completed 1 to 3 interviews. Analysis used descriptive statistics and a narrative thematic approach. We also drew from analysis meeting notes. Girls from Spanish-speaking families had later ages of autism identification, which informed our qualitative themes: Survival Explains Stigma, a view of Hispanic/Latino culture that clarified the "stigma" that impacted the diagnostic process; and Intergenerational Influences on staying safe, which could include masking autistic traits. ALEC quotes show their contributions. Our community-engaged approach contributed to our findings and a more complex view of culture.