Parent Developmental Concerns, Provider Response to Concerns, and Delayed Autism Spectrum Disorder Diagnosis
Objectives: Our objective was to assess whether age of first parent concern and first parent discussion of concerns with a provider differs in children with ASD versus intellectual disability/developmental delay (ID/DD), and to assess whether provider response to first parent concerns is associated with delayed ASD diagnosis.
Methods: Using data from the 2011 Survey of Pathways to Diagnosis and Services, we analyzed diagnostic experiences of 1420 children with ASD and 2098 children with ID/DD. We assessed three time points in the child’s diagnostic experience: child age at first concerns, age at first conversation with a provider, and age at ASD diagnosis (for ASD group only). We also assessed how health care providers responded to parents’ first concerns, via yes/no report of six provider actions, categorized into two domains (proactive vs. reassuring/passive). Using t-tests, we compared age of first parent concern, age of first provider conversation, and type of provider response in ASD versus ID/DD groups. Among children with ASD, we used logistic regression to test the association between provider response type with experience of diagnostic delay ≥3 years.
Results: Compared to children with ID/DD, children with ASD had lower mean age of first parent concern (2.12 vs. 2.99 years, p<0.001) and first discussion of concerns with a provider (2.33 vs. 3.24 years, p <0.001). Time between first parent concerns and first discussion of concerns with provider was similar in both groups (0.27 vs. 0.31 years, p = 0.61). Children with ASD were diagnosed at a mean age of 5.18 years (4.91–5.45) and experienced a mean delay of 3.05 years (2.79-3.30) from age at first concerns to age of diagnosis. Children with ASD were less likely than children with ID/DD to experience ≥2 proactive provider responses to parent concerns (AOR: 0.68 [0.50-0.90]) and were more likely to experience ≥1 reassuring/passive responses (AOR: 1.44 [1.09-1.91]). Among children with ASD, those with ≥2 proactive responses to parent developmental concerns were less likely to have a ≥3 year delay between first parent concern and ASD diagnosis (AOR: 0.53 [0.35-0.82]), or between first discussion with provider and ASD diagnosis (AOR: 0.43 [0.28 - 0.65]). In contrast, CSHCN with ASD having ≥1 passive/reassuring responses had higher odds of both these delays (AOR: 2.45 [1.62 - 3.69] and AOR: 2.53 [1.66 - 3.85]).
Conclusions: In this nationally-representative U.S. sample, children with ASD experienced significant diagnostic delays. Despite early parent concerns, children with ASD had less proactive and more passive provider responses to first parent concerns than children with ID/DD. Less proactive/more passive provider responses were associated with diagnostic delays in ASD. Findings highlight the need for stakeholders and policyholders to provide more support to front-line health care providers, so that children with ASD receive early access to evidence-based care.
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