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Thursday, April 16, 2015

Providers, Diagnosis, and Reassuring/Passive Responses

As I point out in The Politics of Autism (forthcoming later in 2015 from Rowman and Litlefield), pediatricians have long been slow to react to parental suspicions of autism.  (Talk to autism parents, and you will hear of false reassurances about "late talkers," among other things).  At The Journal of Pediatrics, Katharine Elizabeth Zuckerman, Olivia Jasmine Lindly, and Brianna Kathleen Sinche have a study titled "Parental Concerns, Provider Response, and Timeliness of Autism Spectrum Disorder Diagnosis."  It confirms that the problem persists. From the article:
I n 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, more than one-half of children with either ASD or ID/DD had passive/reassuring provider responses to parental concerns. Finally, among children with ASD, diagnostic delays were longer when the child’s provider had a reassuring/passive response to parental early developmental concerns.

Although the literature suggests that early signs of ASD may be difficult for parents to detect, this analysis shows that compared with parents of children with ID/DD, parents of children with ASD reported concerns earlier and had earlier provider conversations about these concerns, but were more likely than to receive reassuring/passive provider responses to those concerns. This finding suggests that the particular presenting characteristics of ASD may predispose affected children to longer diagnostic delays. Because the longest delay between initial parental concerns and ASD diagnosis occurred after the first provider conversation about parental concerns, the health care system in general and health care providers specifically may play substantial roles in these delays.

Providers may have different reasons for not acting on parents’ developmental concerns; for example, they may not elicit these concerns in the first place, or may underestimate the importance of concerns that parents raise. Providers also may share parents’ concerns but lack screening, referral, or diagnostic resources overall, or may experience significant delays in attempting to access such resources. Although children with ASD were younger than those with ID/DD at the time of initial parental concerns, our analyses controlled for age, and so differential provider responses cannot be solely explained by age differences. However, children with ASD and those with ID/DD may have differed in content of parental concerns or in provider observations; for instance, some ID/DD-related conditions are apparent at or before birth, allowing providers and parents to enter into early conversations with more information.