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Parental Perceptions of a Comprehensive Diagnostic Evaluation for Toddlers at Risk for Autism Spectrum Disorder

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Abstract

Parent satisfaction with neurodevelopmental evaluations may influence the pursuit of intervention. Parent satisfaction with a neurodevelopmental evaluation for toddlers at risk for autism (n = 257; 128 with autism) was examined using the Post-Evaluation Satisfaction Questionnaire, which collected quantitative and qualitative information. Fewer ethnic/racial minority than non-minority parents returned the questionnaire. Factor analysis indicated a one-factor model, Total score, which did not differ significantly by diagnosis, autism severity, child’s cognitive or adaptive delay, family race/ethnicity, maternal education, family annual income, or parental stress. Examination of 24 individual items showed a race/ethnicity difference for only one item; minority parents scored the evaluation as meeting their needs less. Qualitative data stressed the importance of fully explaining diagnoses/recommendations and providing direct and clear feedback.

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Acknowledgments

This study was funded by the National Institute of Child Health and Human Development, (Grant Number R01HD039961). We would like to thank all the families who participated in our study, and the physicians, clinicians, medical staff, and graduate and undergraduate students who contributed to the study.

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Author notes

  1. Dasal Tenzin Jashar

    Present address: Kennedy Krieger Institute, 1750 E. Fairmount Avenue, Baltimore, MD, 21231, USA

Authors and Affiliations

  1. University of Minnesota, Minneapolis, MN, USA

    Dasal Tenzin Jashar

  2. Department of Psychology, University of Connecticut, 406 Babbidge Road, Unit 1020, Storrs, CT, 06269, USA

    Deborah Fein, Jeffrey D. Burke, Lauren E. Miller & Marianne L. Barton

  3. Department of Pediatrics, Baylor College of Medicine, 8080 North Stadium Drive, Suite 180, Houston, TX, 77054, USA

    Leandra N. Berry

  4. Connecticut Children’s Medical Center, 282 Washington Street, Hartford, CT, 06106, USA

    Thyde Dumont-Mathieu

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  1. Dasal Tenzin Jashar
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Contributions

Author DTJ was part of study design development, data collection, data analysis, and writing. Authors DF and TDM were part of study design development, data collection, and writing. Authors LNB, LEM, and MLB were part of study design development and data collection. Author JDB was part of data analysis.

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Correspondence to Dasal Tenzin Jashar.

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Conflict of interest

Authors DF and MLB are part owners of the Modified Checklist for Autism in Toddlers. This is provided free of charge to physicians. Royalties are charged when it is incorporated into a commercial system. Research into the MCHAT is currently supported by NICHD (Robins, PI). Authors DTJ, LNB, LEM, and TDM declare that they have no conflict 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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Informed consent was obtained from individual participants included in the study.

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Jashar, D.T., Fein, D., Berry, L.N. et al. Parental Perceptions of a Comprehensive Diagnostic Evaluation for Toddlers at Risk for Autism Spectrum Disorder. J Autism Dev Disord 49, 1763–1777 (2019). https://doi.org/10.1007/s10803-018-3851-z

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