Parental Concerns, Provider Response, and Timeliness of Autism Spectrum Disorder Diagnosis
Open accessAbstract
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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In autism and other developmental conditions, children who screen positive may face long wait times, geographic inaccessibility, and shortages of specialists trained in early childhood diagnostics.
“This issue is well-documented in the context of autism and other developmental conditions, where children who screen positive may face long wait times, geographic inaccessibility, and shortages of specialists trained in early childhood diagnostics.”
From Navigating the Challenges: A Commentary on Barriers to Autism Screening in Childcare Centers (2026) · cites this paper as Zuckerman et al., 2015
The Discussion reports substantial ASD diagnostic delays after parents first raised concerns and says providers may lack screening, referral, or diagnostic resources or face delays accessing them (page not provided). The paper does not establish geographic inaccessibility or shortages of specialists trained in early childhood diagnostics, and its findings concern parental concerns rather than children who screened positive. (LLM, conf=0.87)
Experimental — accuracy not yet measuredAfter a positive autism screen, families-especially those from low-income or rural communities-often experience significant delays in accessing follow-up assessments and services.
“For example, research has shown that after a positive autism screen, families—especially those from low-income or rural communities—often experience significant delays in accessing follow-up assessments and services (Karp et al., 2018; Zuckerman et al., 2015).”
From Navigating the Challenges: A Commentary on Barriers to Autism Screening in Childcare Centers (2026) · cites this paper as Zuckerman et al., 2015
The Discussion (page unavailable) reports that ASD diagnosis was delayed by nearly three years after parents first discussed developmental concerns with a provider. The study measures delay after that conversation, not after a positive autism screen, and does not establish delays in accessing follow-up assessments or services specifically for rural families. Its background notes later diagnosis among poor children, but does not establish the full low-income-or-rural claim. (LLM, conf=0.88)
Experimental — accuracy not yet measuredMany adults with ASD do not receive adequate services and support, but their receipt can improve outcomes across a number of domains.
“although many adults with ASD do not receive adequate services and support 198 , their receipt can improve outcomes across a number of domains 158 .”
From Autism spectrum disorder (2020) · cites this paper as [158]
The Results and Discussion address children’s diagnostic delays and access to early care, not whether adults with ASD receive adequate services. The introduction associates early identification in children with better long-term outcomes, but does not assess outcomes from adults’ receipt of services. Searches for adult services, support, and outcomes found no passage addressing the attributed claim; page numbers were not available in our copy. (LLM, conf=0.75)
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References 55 · Cited by 215
- Authors
- Zuckerman, K. E., Lindly, O. J., & Sinche, B. K.
- Affiliations
- Oregon Health & Science University (US)
- Oregon State University (US)
- Corresponding author
- Zuckerman, Katharine Elizabeth
- Venue
- The Journal of Pediatrics
- Publisher
- Elsevier BV
- Published
- 2015-06
- Volume
- 166
- Issue
- 6
- Pages
- 1431-1439.e1
- ISSN
- 0022-3476 (ISSN-L)
- PMC
- PMC4446243
- OpenAlex
- W2084885420
- Cited by
- 215
- References
- 55
- Citations by year
- 2026: 18 · 2025: 18 · 2024: 14 · 2023: 16 · 2022: 22 · 2021: 29 · 2020: 30 · 2019: 20 · 2018: 19 · 2017: 11 · 2016: 15 · 2015: 3
- FWCI
- 9.63
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- The Journal of Pediatrics (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- Centers for Disease Control and Prevention
- Center for Depression Research and Clinical Care, University of Texas Southwestern Medical Center
- National Institute of Mental Health (K23MH095828)
- Topics
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Health Sciences › Medicine › Psychiatry and Mental health › Child Nutrition and Feeding Issues
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Keywords
- autism spectrum disorder, delayed diagnosis, parental concerns, intellectual disability, developmental delay, primary care, provider communication
- MeSH terms
- Adolescent, Attitude to Health, Child, Developmental Disabilities, Child Development Disorders, Pervasive, Female, Health Personnel, Humans, Male, Parents, Time Factors
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