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Testing Sensory and Multisensory Function in Children with Autism Spectrum Disorder
Published on: April 22, 2015
Parental concerns, provider response, and timeliness of autism spectrum disorder diagnosis
Katharine Elizabeth Zuckerman1, Olivia Jasmine Lindly2, Brianna Kathleen Sinche1
1Division of General Pediatrics, Doernbecher Children's Hospital Oregon Health & Science University, Portland, OR.
Insights
Parents of children with autism spectrum disorder (ASD) voice concerns earlier, but passive provider responses can delay diagnosis. Early, proactive engagement is crucial for timely ASD diagnosis.
Area of Science:
- Developmental Pediatrics
- Child Neurology
- Healthcare Access and Equity
Background:
- Early identification of developmental concerns in children is critical for timely intervention.
- Autism spectrum disorder (ASD) and intellectual disability/developmental delay (ID/DD) often present with overlapping early signs, posing diagnostic challenges.
- Parental concerns are frequently the first indicator of potential developmental issues.
Purpose of the Study:
- To compare the age of initial parental concern and subsequent healthcare provider discussion between children with ASD and those with ID/DD.
- To investigate the association between healthcare provider response type and diagnostic delay in children with ASD.
Main Methods:
- Analysis of nationally representative data from the 2011 Survey of Pathways to Diagnosis and Treatment.
- Comparison of age at first parental concern and age at first provider discussion for 1420 children with ASD and 2098 with ID/DD.
- Categorization of provider responses as proactive or reassuring/passive, and assessment of their link to diagnostic delay in ASD.
Main Results:
- Children with ASD were identified with parental concerns and provider discussions at a younger age compared to children with ID/DD.
- Parents of children with ASD were less likely to receive proactive provider responses and more likely to receive reassuring/passive responses than parents of children with ID/DD.
- Proactive provider responses were associated with shorter diagnostic delays for children with ASD, while passive/reassuring responses correlated with longer delays.
Conclusions:
- Despite early parental concerns, diagnostic delays for ASD are prevalent, especially when healthcare providers offer passive or reassuring responses.
- Improvements in primary care are needed to ensure timely and accurate diagnosis of ASD.
- Healthcare provider communication and response strategies significantly impact the diagnostic trajectory for children with developmental disorders.
Objectives:
To assess differences between child age at first parental concern and age at first parental discussion of concerns with a health care provider among children with autism spectrum disorder (ASD) vs those with 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 or reassuring/passive, among 1420 children with ASD and 2098 children with ID/DD. In the 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 concerns with a provider. Compared with parents of children with ID/DD, parents of children with ASD were less likely to receive proactive responses to their concerns and more likely to receive reassuring/passive responses. Among children with ASD, those with more proactive provider responses to concerns had shorter delays in ASD diagnosis compared with those with passive/reassuring provider responses.
Conclusion:
Although parents of children with ASD have early concerns, delays in diagnosis are common, particularly when providers' responses are reassuring or passive, highlighting the need for targeted improvements in primary care.
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