Autism Diagnosis Often Delayed Despite Parental Concerns

Troy Brown, RN

April 23, 2015

Many children with autism spectrum disorder (ASD) were not diagnosed until they were approximately 5 years of age, despite the fact that parents had expressed concern to physicians as much as 3 years earlier, according to a new study.

Katharine Elizabeth Zuckerman, MD, MPH, from the Division of General Pediatrics, Doernbecher Children's Hospital Oregon Health & Science University, Portland, and colleagues report their findings in an article published online April 14 in the Journal of Pediatrics.

"Previous research shows that parents experience long delays between initial evaluation and ASD diagnosis, and that providers often inappropriately reassure families who need ASD specialty consultation," the authors write. "However, to date no studies have examined how provider responses to parental developmental concerns relates to the age at ASD diagnosis."

They continue, "Furthermore, no studies have examined whether provider responses differ among children with ASD compared with children with other early developmental conditions, such as [developmental disability] DD or intellectual disability (ID), which are more common and may have similar presenting symptoms."

The researchers used nationally representative data from the 2011 Survey of Pathways to Diagnosis and Services ("Pathways Survey"). The parent-reported survey includes children who were ever diagnosed with ASD, ID, or DD and who also qualified as children with special health care needs (CSHCN), as assessed by the CSHCN Screener, a non-condition-specific screening tool.

The researchers included 1420 children with ASD and 2098 children with ID/DD. Of the children with ASD, 924 (65.1%) had coexisting ID/DD and 496 (34.9%) had ASD only.

They found that, on average, parents first discussed concerns with healthcare providers about their child having ASD when the child was aged about 2.3 years compared with parents of children with ID/DD, who expressed concern when their child was aged approximately 3.2 years. The authors adjusted their analyses for a variety of cofactors including household income level, health insurance type, and region of residence.

Parents of children with ASD received 14% fewer proactive responses to their concerns than children with ID/DD. This means these providers were less likely to conduct developmental tests or refer the child to a specialist, the authors explain. Providers were also more likely to reassure parents of children with ASD that their child would "grow out of it," the authors write.

When the investigators compared children with more passive and reassuring providers with children whose providers were more proactive, those with passive providers waited longer, in some cases as long as 2 years or more, to be diagnosed with ASD.

"This study implies that the behavior of healthcare providers is likely a very important factor in delayed autism identification," Dr Zuckerman noted in a journal news release.

More education and training may help providers respond to parental concerns, especially for ASD. In addition, care coordination in the primary care setting may help children with ASD receive a timely diagnosis and early therapeutic services.

"These findings highlight the need for stakeholders and policyholders to provide more support to front-line healthcare providers, so that children with ASD receive early access to evidence-based care," the authors conclude.

The study was funded by the Medical Research Foundation of Oregon. Dr Zuckerman was funded by the National Institute of Mental Health. The authors have disclosed no relevant financial relationships.

J Pediatr. Published online April 14, 2015. Full text

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