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A Mixed Methods Study of Barriers to Formal Diagnosis of Autism Spectrum Disorder in Adults

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Abstract

Delayed diagnosis of autism spectrum disorder (ASD) into adulthood is common, and self-diagnosis is a growing phenomenon. This mixed methods study aimed to explore barriers to formal diagnosis of ASD in adults. In a qualitative strand, secondary analysis of data on the experiences of 114 individuals who were self-diagnosed or formally diagnosed with ASD in adulthood was used to identify barriers. In a quantitative strand, 665 individuals who were self-diagnosed or formally diagnosed in adulthood were surveyed online to examine incidence and severity of barriers. Fear of not being believed by professionals was identified as the most frequently occurring and most severe barrier. Professionals must strategize to build trust with individuals with ASD, particularly when examining the accuracy of self-diagnosis.

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Acknowledgments

The researcher would like to thank the participants of this study for sharing their experiences.

Author Contributions

LFL conceived of the study, designed and implemented data collection and analysis, and drafted the manuscript.

Funding

This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

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Authors and Affiliations

  1. Department of Nursing, University of Vermont, 205 Rowell Building, 106 Carrigan Drive, Burlington, VT, 05405-0068, USA

    Laura Foran Lewis

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  1. Laura Foran Lewis
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Correspondence to Laura Foran Lewis.

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Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Informed consent was obtained from all individual participants included in the study.

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Lewis, L.F. A Mixed Methods Study of Barriers to Formal Diagnosis of Autism Spectrum Disorder in Adults. J Autism Dev Disord 47, 2410–2424 (2017). https://doi.org/10.1007/s10803-017-3168-3

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