410 - Beyond Tip Toeing: Illuminating the ‘Early Signs’ of Autism among Racially and Ethnically Diverse Families of Autistic Girls in Los Angeles County

Poster Number: 410
Publication Number: 410.516

Background: There is increasing evidence that girls are an under-studied, under-identified autism population. However, there is a dearth of research about girls with intersecting identities, despite documented differences in how families from different racial, ethnic, cultural, socioeconomic, etc., groups may recognize, interpret, and respond to early autism signs.

Objective: To address this gap in research, this qualitative study explores the early signs of autism as narrated by diverse families of autistic girls.

Design/Methods: We recruited 21 diverse caregivers and/or families of 18 girls (one family had twin girls) aged 3 to 11 from a Los Angeles area Regional Center. Our sample identified as Latine (67%), multiracial identity (28%), and Asian (5%). We conducted semi-narrative interviews between September 2021 and April 2022 (10 in English, 8 in Spanish). We used Braun and Clark’s (2006) thematic analysis to identify overarching themes related to early signs observed by parents or caregivers. At least two team members (diverse in race, ethnicity, and neurotype) coded each transcript in NVivo.

Results: We identified eight themes related to early signs: 1) Delayed language; 2) not responding to name; 3) ‘fussy babies;’ 4) early readers; 5) sleep challenges; 6) gastrointestinal and feeding challenges; 7) ‘stim’ behaviors (both common and less common); and 8) a need for sameness. Our analysis also identified the various ways that families interpreted and responded to these signs vis-à-vis family culture and gender expectations. For example, a need for sameness was interpreted as “perfectionism;” and ‘not responding to name’ as “she ignores me or sometimes laughs.” Families’ narratives also included ways that healthcare providers responded, e.g., ‘let’s wait and see’ or assuring parents that the child’s development was typical. Finally, we explore the ways in which intergenerational family dynamics and culture influenced the identification and interpretation of these early signs.

Conclusion(s): These qualitative findings illuminate the nuanced ways that diverse families of autistic girls experienced, interpreted, and responded to the early signs of autism in their daughters and granddaughters. These descriptive findings provide a useful starting point for clinicians to support efforts to reduce racial, ethnic, and sex/gender disparities in autism identification and diagnosis.