Original ArticleParental Concerns, Provider Response, and Timeliness of Autism Spectrum Disorder Diagnosis
Section snippets
Methods
Data came from the 2011 Survey of Pathways to Diagnosis and Services (“Pathways Survey”), a nationally representative, parent-reported survey of children ever diagnosed with ASD, ID, and/or DD and who also qualified as children with special health care needs (CSHCN) as assessed by the CSHCN Screener, a non–condition-specific measure.31 This study was deemed exempt from review by the Oregon Health & Sciences University Institutional Review Board. The Pathways Survey was a follow-up to the
Results
Of the 4032 CSHCN sampled in the Pathways Survey, 2098 (63.8% of the sample) were identified as having current ID/DD, and 1420 (36.2%) had current ASD. Of those with ASD, 924 (65.1%) had coexisting ID/DD, and 496 (34.9%) had ASD only. Compared with children with ID/DD only, children with ASD overall were more likely to be younger, male, have a higher household income, be privately insured, have more parental education, live in a 2-parent family, and have functional limitations. Among ASD
Discussion
In this nationally representative sample of children with ASD, we found that despite early parental concerns, ASD diagnosis was delayed by nearly 3 years after the first parental conversation with a provider. In addition, despite evidence suggesting that parental concerns strongly predict child developmental risk both overall and for ASD in particular,43, 44, 45 more than one-half of children with either ASD or ID/DD had passive/reassuring provider responses to parental concerns. Finally, among
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Funded by the Medical Research Foundation of Oregon. K.Z. was funded by the National Institute of Mental Health (1K23MH095828). The authors declare no conflicts of interest.