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Obtaining a First Diagnosis of Autism Spectrum Disorder: Process and Contributors from a National Study

MacKenzie, Kristen T (2021) Obtaining a First Diagnosis of Autism Spectrum Disorder: Process and Contributors from a National Study. Doctoral Dissertation, University of Pittsburgh. (Unpublished)

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This dissertation conducted the first comprehensive study of the process of obtaining an Autism Spectrum Disorder (ASD) diagnosis for parents in the United States. Parents frequently report that the process is challenging, yet the process is understudied, which has provided little in the way of guidance to ease burden on families. In addition to better describing the process, this dissertation sought to investigate three potential contributors to difficulty experienced in the process: patient-provider relationships, racial identification, and family income. A total of 406 parents of children with ASD were recruited from the SPARK research registry and administered a survey gathering information on 1) participant demographics, 2) the ASD diagnostic process, and 3) the quality of patient-provider relationships (i.e. trust and communication). Descriptive statistics were used to provide a detailed description of the process and its various steps. Continuous variables from the DPQ were used to develop a measure of diagnostic difficulty. A series of multiple linear regression models were used to assess the association between patient-provider relationships and difficulty. One-way analysis of covariance (ANCOVA) was used to evaluate whether race and income influenced difficulty. Results revealed invaluable descriptive information that concretized the steps of the ASD diagnostic process in the United States. Additionally, results revealed that poorer patient-provider relationships were associated with greater difficulty experienced obtaining an ASD diagnosis. There was some evidence to suggest that diagnostic difficulty varied by race, but no evidence that difficulty varied by family income. Results provide novel context that better illustrates what the ASD diagnostic process looks like for families in the United States. The identification of broader trends lays the necessary groundwork for future in-depth study and presents a wealth of opportunities for social workers to ease the burden on parents of children with ASD and their families.


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Item Type: University of Pittsburgh ETD
Status: Unpublished
CreatorsEmailPitt UsernameORCID
MacKenzie, Kristen Tmackenzi@pitt.edumackenzi0000-0002-7608-1295
ETD Committee:
TitleMemberEmail AddressPitt UsernameORCID
Committee ChairEack, Shaun
Committee MemberNewhill, Christina
Committee MemberGreeno, Catherine
Committee MemberMazefsky, Carla
Date: 25 May 2021
Date Type: Publication
Defense Date: 31 March 2021
Approval Date: 25 May 2021
Submission Date: 19 April 2021
Access Restriction: 2 year -- Restrict access to University of Pittsburgh for a period of 2 years.
Number of Pages: 174
Institution: University of Pittsburgh
Schools and Programs: School of Social Work > Social Work
Degree: PhD - Doctor of Philosophy
Thesis Type: Doctoral Dissertation
Refereed: Yes
Uncontrolled Keywords: autism spectrum disorder; children; parents; diagnosis
Additional Information: Alternate email:
Date Deposited: 25 May 2021 14:52
Last Modified: 25 May 2023 05:15


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