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Parent-Reported Severity and Health/Educational Services Use Among US Children with Autism

Results from a National Survey

Zuckerman, Katharine E. MD, MPH*,†; Friedman, Nora D. B. MD; Chavez, Alison E. BA*; Shui, Amy M. MA§; Kuhlthau, Karen A. PhD‖,¶

Journal of Developmental & Behavioral Pediatrics: May 2017 - Volume 38 - Issue 4 - p 260–268
doi: 10.1097/DBP.0000000000000437
Original Articles
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Objective: Little national data exist regarding service use patterns for children with autism spectrum disorder (ASD) of varying severity. This study aimed to assess the relationship between parent-reported severity and use of educational and health care services.

Methods: Data from the 2011 Survey of Pathways to Diagnosis and Services were used to examine a nationally representative sample of 1420 US children aged 6 to 17 years with ASD, with or without developmental delay and intellectual disability. Weighted multivariable logistic regression assessed associations of parent-reported ASD severity and child sociodemographic characteristics with school-based therapy, non-school-based therapy, behavioral interventions, and specialty provider visits.

Results: Higher parent-reported ASD severity was associated with increased likelihood of current use of school-based therapy (adjusted odds ratio [AOR] = 4.08, 95% confidence interval =1.85–8.98), non-school-based therapy (AOR = 3.60 [1.95–6.66]), and behavioral interventions (AOR = 2.30 [1.22–4.34]), as well as regular specialty provider visits (AOR = 2.99 [1.38–6.46]). Although rates of service use were generally highest among children with severe ASD, non-school-based therapy and behavioral interventions were only used by about half of children with severe ASD, and about 1 in 4 children with mild ASD were using none of the therapies asked about.

Conclusion: Parent-reported severity is associated with increased therapy and specialty provider service use among children with ASD. However, substantial variability exists in service use across levels of severity.

*Division of General Pediatrics, Doernbecher Children's Hospital, Oregon Health & Science University, Portland, OR;

Portland State University School of Public Health, Portland, Oregon;

Lurie Center for Autism, Massachusetts General Hospital for Children, Boston, MA;

§Biostatistics Center, Massachusetts General Hospital, Boston, MA;

Division of General Pediatrics, Massachusetts General Hospital for Children, Boston, MA;

Department of Pediatrics, Harvard Medical School, Boston, MA.

Address for reprints: Katharine E. Zuckerman, MD, MPH, Division of General Pediatrics, Oregon Health & Science University, CDRCP 707 SW Gaines St, Portland, OR 97239; e-mail: zuckerma@ohsu.edu.

N. D. B. Friedman's effort was funded by the Nancy Lurie Marks Family Foundation. K. E. Zuckerman's and A. E. Chavez's efforts were funded by the National Institute of Mental Health, award number K23MH095828.

Disclosure: The authors declare no conflict of interest.

See the video abstract from the authors at JDBP.org.

Received September , 2016

Accepted February , 2017

Copyright © 2017 Wolters Kluwer Health, Inc. All rights reserved.