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Family Experiences with the Diagnosis of Autism Spectrum Disorder: System Barriers and Facilitators of Efficient Diagnosis

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Abstract

This paper examines family experiences with the efficiency of ASD diagnosis. Children were age 8 or younger with ASD (n = 450). Outcomes were delay from first parent concern to diagnosis, shifting diagnoses, and being told child did not have ASD. Predictors were screening, travel distance, and problems finding providers. Logit models were used to examine associations. Screening was associated with reduced delay in diagnosis; problems finding providers were associated with greater delay. Screening, travel distance, and delay in diagnosis were associated with shifting diagnoses and being told child did not have ASD. Physician and parent training in communication and addressing mental health professional shortages and maldistribution may improve the diagnosis experiences of families of children with ASD.

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Funding

This project was funded by a Grant from the Health Resources and Services Administration (H6MMC26248-01). Dr. Martinez was supported by a National Research Service Award Postdoctoral Traineeship from AHRQ (T32-HS000032).

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Authors and Affiliations

  1. Cecil G Sheps Center for Health Services Research, University of North Carolina at Chapel Hill, 725 MLK Blvd, Chapel Hill, NC, 27599-7590, USA

    M. Martinez, K. C. Thomas & C. S. Williams

  2. Carolina Institute for Developmental Disabilities, University of North Carolina at Chapel Hill, 101 Renee Lynne Ct, Carrboro, NC, 27510, USA

    R. Christian & R. Pretzel

  3. Department of Allied Health Sciences, 321 S. Columbia Street, Bondurant Hall, CB#7190, Chapel Hill, NC, 27599-7190, USA

    E. Crais & S. R. Hooper

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  1. M. Martinez
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  2. K. C. Thomas
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  3. C. S. Williams
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  4. R. Christian
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  5. E. Crais
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Contributions

MM made substantial contributions to the analysis of the data, revised the manuscript critically for important intellectual content, and gave final approval of the version to be published. KT made substantial contributions to conception, design and interpretation of data, drafted the manuscript, and gave final approval of the version to be published. CW made substantial contributions to analysis and interpretation of the data, revised the manuscript critically for important intellectual content, and gave final approval of the version to be published. RC made substantial contributions to conception and design, acquisition of data and its interpretation, revised the manuscript critically for important intellectual content, and gave final approval of the version to be published. EC and RE made substantial contributions to conception and design, reviewed the manuscript critically for important intellectual content, and gave final approval for the version to be published. SRH made substantial contributions to conception and design, and interpretation of data, revised the manuscript critically for important intellectual content, and gave final approval of the version to be published.

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Correspondence to K. C. Thomas.

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Conflict of interest

Drs. Martinez, Thomas, Williams, Christian, Crais, Pretzel and Hooper declare that they have no conflict of interest.

Ethical Approval

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. This article does not contain any studies with animals performed by any of the authors.

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Informed consent was obtained from all individual participants included in the study.

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Martinez, M., Thomas, K.C., Williams, C.S. et al. Family Experiences with the Diagnosis of Autism Spectrum Disorder: System Barriers and Facilitators of Efficient Diagnosis. J Autism Dev Disord 48, 2368–2378 (2018). https://doi.org/10.1007/s10803-018-3493-1

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