Abstract
The U.S. Preventive Services Task Force (USPSTF) report on screening for Autism Spectrum Disorder (ASD) highlighted the need for research that examines the harms potentially associated with screening so as to assess the overall net benefit of universal screening. In response, this study engages qualitative, semi-structured interviews to generate a taxonomy outlining potential harms reported by parents and providers (pediatricians and Early Intervention providers) with experience in screening young children for ASD. Potential harms emerged including: physical, psychological, social, logistical/financial, opportunity cost, attrition, and exacerbation of non-targeted disparities. Respondents reported harms being experienced by the toddlers, parents, and providers. The harms reported highlight opportunities for providers to offer resources that mitigate the potential for these unintended consequences.
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Acknowledgments
The authors wish to thank our Early Intervention collaborators for their enduring partnership and the pediatricians and parents who participated in this study for so generously sharing both their time and their experiences with us.
Funding
This research was supported by a Health Resources Services Administration grant to Drs. Eisenhower and Carter as Multiple Principal Investigators (MPI; R40MC26195) and a National Institute of Mental Health grant (R01MH104400) to Drs. Sheldrick and Carter as MPIs and an associated supplement to examine the harms associated with ASD screening awarded to Drs. Mackie and Carter. This study design, data collection, data analysis and interpretation of this data are those of the authors and do not represent the official position or policy of, nor should any endorsements be inferred by HRSA, HHS, NIMH, or the U.S. Government.
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MP, LR and TIM participated in the conceptualization of the manuscript, directed and performed data analysis and interpretation, drafted sections of the manuscript, and edited the final manuscript. TIM provided ongoing guidance in the collection, analysis, and publication of this article as senior author. AJS performed data management, data collection and analysis, assisted with data analysis and interpretation and edited the final manuscript. RCS participated in the original design of the study, assisted with data analysis and interpretation, drafted sections of the manuscript, and contributed to revising the final manuscript. ASC and AE conceptualized the original study design, contributed to data analysis and interpretation, and contributed to revising the final manuscript. SB-F assisted with data analysis and interpretation and contributed to revising the final manuscript.
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Dr. Sheldrick is the co-creator of the POSI, which is one of the two first-stage screeners used in this study. He conducts research related to this instrument but receives no royalties. Dr. Carter is the cocreator of the POSI but receives no royalties. She is also co-creator of the BITSEA, which is one of the two first-stage screeners used in this study. Dr. Carter receives royalties on the sale of the BITSEA, which is distributed by MAPI Research Trust. The remaining co-authors report no conflicts of interest.
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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
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Petruccelli, M., Ramella, L., Schaefer, A.J. et al. A Taxonomy of Reported Harms in Pediatric Autism Spectrum Disorder Screening: Provider and Parent Perspectives. J Autism Dev Disord 52, 647–673 (2022). https://doi.org/10.1007/s10803-021-04964-3
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DOI: https://doi.org/10.1007/s10803-021-04964-3