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Implications of Universal Autism Screening: Perspectives From Culturally Diverse Families With False-Positive Screens
Jenna Sandler Eilenberg1, Deniz Kizildag1, Ariel O Blakey1
1Department of Psychological and Brain Sciences, Boston University (JS Eilenberg, D Kizildag, AO Blakey, ND Cardona, A Oberoi, and KA Long), Boston, Mass.
Insights
Caregivers found benefits in autism spectrum disorder (ASD) screening, including early service connection and developmental knowledge, outweighing temporary distress. Parents support universal ASD screening, recommending its expansion beyond pediatricians.
Area of Science:
- Pediatric Health
- Developmental Psychology
- Public Health
Background:
- The American Academy of Pediatrics (AAP) recommends universal autism spectrum disorder (ASD) screening for young children.
- The US Preventive Services Task Force has identified insufficient evidence regarding the harms and benefits of universal ASD screening.
- This study addresses the evidence gap by exploring caregiver perceptions of universal ASD screening.
Purpose of the Study:
- To investigate caregiver experiences and perceptions of universal autism spectrum disorder (ASD) screening.
- To gather recommendations for improving the ASD screening and evaluation process from families who received a false-positive screen.
- To understand the perceived harms and benefits of universal ASD screening from a caregiver perspective.
Main Methods:
- Qualitative interviews were conducted with 26 culturally diverse caregivers of children with false-positive ASD screens.
- Interviews focused on parents' experiences with the screening and evaluation process and their recommendations for improvement.
- Data were analyzed using applied thematic analysis after verbatim transcription and coding.
Main Results:
- Caregivers reported increased knowledge of child development and validation of concerns through the ASD screening process.
- The screening process facilitated connection to services, leading to perceived improvements in children's developmental delays.
- Despite experiencing anxiety during wait times for formal assessment, all caregivers would repeat the screening and evaluation process.
Conclusions:
- The benefits of connecting children to developmental services and gaining developmental knowledge, as experienced through a false-positive ASD screen, outweighed temporary emotional distress.
- Caregivers' experiences support the AAP's recommendations for universal ASD screening.
- Caregivers recommended expanding ASD screening beyond pediatric settings to other community locations.
Objective:
The American Academy of Pediatrics (AAP) recommends that pediatricians screen all young children for autism spectrum disorder (ASD). However, the US Preventive Services Task Force stated that there is insufficient evidence about the potential harms and benefits of universal ASD screening. To address this gap, we conducted qualitative interviews with caregivers of children who received a false-positive ASD screen to learn about families' perceptions of the harms and benefits of universal ASD screening.
Methods:
Culturally diverse caregivers (N = 26) of children with false-positive ASD screens completed qualitative interviews focused on parents' experiences with and recommendations to improve the ASD screening and evaluation process. Interviews were transcribed verbatim, coded, and analyzed using applied thematic analysis.
Results:
Parents explained that the ASD screening and evaluation process increased their knowledge about child development and substantiated existing concerns. The ASD screening and evaluation process resulted in connecting their child to services, which parents felt led to improvements in their child's delays. Parents endorsed anxiety during wait times for the formal developmental assessment. However, all parents expressed that, if given the option, they would repeat the screening and evaluation process again. Caregivers recommended universal screening for ASD and suggested that screening extend beyond the pediatrician to other settings.
Conclusions:
From parents' perspectives, the connection to developmental services and increased knowledge of child development that resulted from the false-positive ASD screen outweighed the time-limited emotional distress triggered by a positive ASD screen. Overall, parents' preferences for universal ASD screening align with the AAP's recommendations.
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