Elsevier

The Journal of Pediatrics

Volume 166, Issue 6, June 2015, Pages 1431-1439.e1
The Journal of Pediatrics

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

https://doi.org/10.1016/j.jpeds.2015.03.007Get rights and content

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.

Section snippets

Methods

Data came from the 2011 Survey of Pathways to Diagnosis and Services (“Pathways Survey”), a nationally representative, parent-reported survey of children ever diagnosed with ASD, ID, and/or DD and who also qualified as children with special health care needs (CSHCN) as assessed by the CSHCN Screener, a non–condition-specific measure.31 This study was deemed exempt from review by the Oregon Health & Sciences University Institutional Review Board. The Pathways Survey was a follow-up to the

Results

Of the 4032 CSHCN sampled in the Pathways Survey, 2098 (63.8% of the sample) were identified as having current ID/DD, and 1420 (36.2%) had current ASD. Of those with ASD, 924 (65.1%) had coexisting ID/DD, and 496 (34.9%) had ASD only. Compared with children with ID/DD only, children with ASD overall were more likely to be younger, male, have a higher household income, be privately insured, have more parental education, live in a 2-parent family, and have functional limitations. Among ASD

Discussion

In 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,43, 44, 45 more than one-half of children with either ASD or ID/DD had passive/reassuring provider responses to parental concerns. Finally, among

References (53)

  • S.J. Blumberg et al.

    Changes in prevalence of parent-reported autism spectrum disorder in school-aged US children: 2007 to 2011-12

  • Prevalence of autism spectrum disorders: Autism and Developmental Disabilities Monitoring Network, 14 sites, United States, 2008

    MMWR Surveill Summ

    (2012)
  • C.P. Johnson et al.

    Identification and evaluation of children with autism spectrum disorders

    Pediatrics

    (2007)
  • Committee on Children With Disabilities

    Technical report: the pediatrician's role in the diagnosis and management of autistic spectrum disorder in children

    Pediatrics

    (2001)
  • R.J. Landa et al.

    Long-term outcomes of toddlers with autism spectrum disorders exposed to short-term intervention

    Pediatrics

    (2012)
  • K.S. Wallace et al.

    Intervening in infancy: implications for autism spectrum disorders

    J Child Psychol Psychiatry

    (2010)
  • M.D. Kogan et al.

    A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005-2006

    Pediatrics

    (2008)
  • J.W. Jacobson et al.

    System and cost research issues in treatments for people with autistic disorders

    J Autism Dev Disord

    (2000)
  • A.V. Buescher et al.

    Costs of autism spectrum disorders in the United Kingdom and the United States

    JAMA Pediatr

    (2014)
  • G. Peacock et al.

    Autism spectrum disorders and health care expenditures: the effects of co-occurring conditions

    J Dev Behav Pediatr

    (2012)
  • D.S. Mandell et al.

    Age of diagnosis among Medicaid-enrolled children with autism, 2001-2004

    Psychiatr Serv

    (2010)
  • D.S. Mandell et al.

    Factors associated with age of diagnosis among children with autism spectrum disorders

    Pediatrics

    (2005)
  • J. Pinto-Martin et al.

    Early diagnosis of autism spectrum disorders

    Curr Treat Options Neurol

    (2004)
  • C. Bethell et al.

    Rates of parent-centered developmental screening: disparities and links to services access

    Pediatrics

    (2011)
  • D.S. Mandell et al.

    Racial/ethnic disparities in the identification of children with autism spectrum disorders

    Am J Public Health

    (2009)
  • L.D. Wiggins et al.

    Examination of the time between first evaluation and first autism spectrum diagnosis in a population-based sample

    J Dev Behav Pediatr

    (2006)
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    Funded by the Medical Research Foundation of Oregon. K.Z. was funded by the National Institute of Mental Health (1K23MH095828). The authors declare no conflicts of interest.

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