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Although parents of children who turn out to have a diagnosis of autism spectrum disorder (ASD) often express concerns about their child’s development early on, providers are far less likely to respond proactively to these concerns-instead delivering a reassuring/passive response-than to address parental concerns about intellectual disability/developmental delay (ID/DD).
Although parents of children who turn out to have a diagnosis of autism spectrum disorder (ASD) often express concerns about their child’s development early on, providers are far less likely to respond proactively to these concerns-instead delivering a reassuring/passive response-than to address parental concerns about intellectual disability/developmental delay (ID/DD). Further, according to an analysis of data from the 2011 Survey of Pathways to Diagnosis and Treatment, passive/reassuring responses rather than proactive responses are associated with delays in ASD diagnosis.
Investigators deemed 3 possible actions as proactive responses to parental concerns: conducting developmental tests, making a referral to a specialist, or discussing concerns with the child’s school. Passive responses were indicating that nothing was wrong with the child, that it was too early to tell if anything was amiss, or suggesting that “the child might grow out of it.”
Of the 1420 children with ASD and the 2098 children with ID/DD whose diagnostic histories investigators reviewed, those with ASD (with or without coexisting ID/DD) were younger (mean age, 2.1 years) when their parents first developed concerns than those with ID/DD (mean age, 3.0 years). Similarly, for children with ASD, parents initially discussed their concerns with a provider when the child had a mean age of 2.3 years compared with 3.2 years for children with ID/DD.
Finally, children with ASD (with or without ID/DD) were diagnosed at mean age 5.2 years, whereas children with ASD and coexisting ID/DD were diagnosed at 4.8 years and those with ASD only at 6.0 years. The mean delay between the first conversation with a provider and a diagnosis of ASD was 2.7 years, whether or not the child had coexisting ID/DD. Overall, 44% of children with ASD experienced at least a 3-year delay between the first conversation and diagnosis (Zuckerman KE, et al. J Pediatr. 2015;166:1431.e1-1439.e1).
Commentary: This is a retrospective study of children ultimately diagnosed with ASD, an intellectual disability, or developmental delay. As such, the results may be subject to recall bias. Also, we don’t know how many times parents of children without these conditions expressed concerns that were correctly put aside by medical providers. Nonetheless, these results highlight the valuable role that pediatricians and other primary care providers can take in attaining the useful goal of early identification of ASD. The American Academy of Pediatrics published a helpful clinical report titled “Identification and evaluation of children with autism spectrum disorders.” This document gives specific advice on surveillance and screening for ASD and directly addresses what actions to take when a parent, other caregiver, or medical provider expresses concerns about a child having autism. You should have this clinical report available for easy reference in your office (Pediatrics. 2007;120:1183-1215). -Michael G Burke, MD
Ms Freedman is a freelance medical editor and writer in New Jersey. Dr Burke, section editor for Journal Club, is chairman of the Department of Pediatrics at Saint Agnes Hospital, Baltimore, Maryland. The editors have nothing to disclose in regard to affiliations with or financial interests in any organizations that may have an interest in any part of this article.