Parental Concerns, Provider Response, and Timeliness of Autism Spectrum Disorder Diagnosis

Abstract

Objective To assess age differences between first parental concern and first parental discussion of concerns with a health care provider, among children with autism spectrum disorder (ASD) versus intellectual disability/developmental delay (ID/DD), and to assess whether provider response to parental concerns is associated with delays in ASD diagnosis. Study design Using nationally-representative data from the 2011 Survey of Pathways to Diagnosis and Treatment, we compared child age at parent’s first developmental concern with age at first discussion of concerns with a provider, and categorized provider response as proactive vs. reassuring/passive, among 1420 children with ASD and 2098 children with ID/DD. Among children with ASD, we tested the association between provider response type and years of diagnostic delay. Results Compared with children with ID/DD, children with ASD were younger when parents first had concerns and first discussed those with a provider. Parents of children with ASD were less likely than parents of children with ID/DD to experience proactive responses to their concerns and were more likely to experience reassuring/passive responses. Among children with ASD, those with more proactive provider responses to concerns had shorter delays in ASD diagnosis. In contrast, children with ASD having passive/reassuring provider responses had longer delays. Conclusions Although parents of children with ASD have early concerns, delays in diagnosis are common, particularly when providers’ responses are reassuring or passive, highlighting needs for targeted improvements in primary care.

Timeliness of Autism Spectrum Disorder Diagnosis and Use of Services Among U.S. Elementary School–Aged Children

“…Previous research has indicated most parents delay only a few months before talking to providers about developmental concerns; however, substantial delays occur after initial provider conversations (10). This study adds to the literature by suggesting ASD diagnostic delays are also associated with long-term treatment differences.…”

“…Nonetheless, some PCPs give false reassurance (9) or fail to direct families to diagnostic resources when valid parental concerns exist (10, 11). Although major pediatric organizations recommend routine ASD screening (12, 13), only around half of PCPs screen for ASD (14–16).…”

The Diagnostic Odyssey of Autism Spectrum Disorder

“…However, research suggests that some pediatricians were more likely to respond passively to parental concerns when children had ASD compared with an intellectual or developmental disability, suggesting that the child might “grow out of it” or expressing that it was “too early” to indicate the need for a formal assessment. 23 These passive responses were associated with increases in diagnostic delays, while more proactive responses were associated with a decrease in diagnostic delays. 23 …”

“…23 These passive responses were associated with increases in diagnostic delays, while more proactive responses were associated with a decrease in diagnostic delays. 23 …”

Should all young children be screened for autism spectrum disorder?

“…Screening rarely leads directly to treatment. It leads to a referral for a specialized evaluation, often with a wait of a year or more (Zuckerman et al, 2015). Once the diagnosis is confirmed, families then may have to wait again until treatment is initiated.…”