Abstract
Although the American Academy of Pediatrics has long recommended universal autism-specific screening at well-child pediatric visits, implementation challenges in primary care settings interfere with high-fidelity universal autism screening. These challenges delay autism identification for some children, leading to delays in needed services and supports. Prior findings indicate that new solutions must be developed to bridge the gap in access to autism screening for families, particularly among those who are under-resourced. One approach is expanding screening to other community settings, such as childcare centers, but there are barriers to this approach, which this commentary aims to address. We discuss challenges and barriers in childcare screening identified through our recently completed pilot study screening for autism in childcare centers, with suggested strategies to address them. These challenges include hesitation among childcare staff to guide conversations or concerns about autism, and stigma around autism diagnosis and presentation. Other challenges relate to emerging concerns regarding legal, ethical, and professional roles and responsibilities surrounding informed consent and data privacy, as well as the identification of children without timely follow-up evaluation and services. There is a need for increasing public awareness as an essential component of autism screening across settings. Our commentary discusses different considerations and practice strategies to meet these needs.
1. Lay Summary
Early identification of autism is critical to support learning, development, and positive outcomes for autistic children. One strategy to support early identification is to use screening tools during pediatric well-visits. However, many children—especially in under-resourced communities—face delays in early identification due to barriers they experience in primary care, for instance, during well-child check ups. This paper discusses the potential of expanding screening to other community settings, namely childcare centers, to help offset the barriers to early identification. We highlight challenges of childcare screening, such as staff discomfort, stigma, and privacy concerns, and offer strategies to address these issues. Increasing public awareness is emphasized as a key step in improving early identification of autism.
Author Contributions
Conceptualization, A.T.W., D.L.R., G.P.L., E.M.H., and E.K.; Methodology, A.T.W., D.L.R., E.M.H., and E.K.; Formal Analysis, A.T.W., G.P.L., and E.F.; Investigation, A.T.W., G.P.L., E.F., A.A., and D.L.R.; Data Curation, A.T.W. and E.F.; Writing—Original Draft Preparation, A.T.W., G.P.L., E.M.H., E.K., E.F., A.A., and D.L.R.; Writing—Review and Editing, A.T.W., G.P.L., E.M.H., E.K., E.F., A.A., and D.L.R.; Project Administration, A.T.W., and D.L.R.; Funding Acquisition, A.T.W., D.L.R., E.M.H., and E.K. All authors have read and agreed to the published version of the manuscript.
Funding
Research reported in this publication was supported by the Eunice Kennedy Shriver National Institute of Child Health & Human Development of the National Institutes of Health under Award Number R21HD108892. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Institutional Review Board Statement
The study presented in this manuscript was conducted in accordance with the Declaration of Helsinki and approved by the Institutional Review Board of Drexel University (protocol number 2208009421, approved on 8 September 2022).
Informed Consent Statement
Informed consent was obtained from all subjects involved in the pilot study.
Data Availability Statement
The data presented in this study are openly available in NIMH Data Archive at DOI: 10.15154/2h10-1053.
Acknowledgments
We thank the childcare center staff and directors, and the caregivers who participated in our study. We would also like to thank our consultant who facilitated engagement with the childcare centers, First Up, an early childhood education organization that provides training for teachers and families. We also thank Brightside Academy for engaging in this project.
Conflicts of Interest
Robins is a co-owner of M-CHAT LLC, which receives royalties from parties that license use of the M-CHAT in commercial products. No royalties were received for any of the data presented in the current study. Robins serves on the Board and the Program Quality Committee of Bancroft. All other authors indicate no conflicts of interest.
Abbreviations
| ASQ-3 | Ages & Stages Questionnaire |
| ASQ:SE:2 | Ages & Stages Questionnaire: Social Emotional |
| CBO | Community-based Organizations |
| CDC | Centers for Disease Control and Prevention |
| M-CHAT-R/F | Modified Checklist for Autism in Toddlers, Revised, with Follow-Up |
| NDBI | Naturalistic Developmental Behavioral Interventions |
| NAEYC | National Association for the Education of Young Children |
| US | United States |
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