Diagnosis of Autism Spectrum Disorder After Age 5 in Children Evaluated Longitudinally Since Infancy
Open accessAbstract
Objective The diagnosis of autism spectrum disorder (ASD) has been found to be remarkably stable but few studies have followed children not initially diagnosed with ASD beyond 3 years of age to examine late or delayed diagnoses. The present study used a prospective familial-risk design to identify children who had undergone multiple comprehensive assessments in preschool and were determined to be negative for ASD only to meet criteria for ASD when tested in middle childhood.Method Data were pooled across 3 research teams studying later-born siblings of children with ASD. Fourteen children met inclusion criteria for the late-diagnosed group and were compared with a large sample of high- and low-risk siblings from the same sites who had ASD or typical development (TD) outcomes at 3 years of age.Results As a group, the late-diagnosed children scored between the TD and ASD groups on most measures administered at 3 years and differed significantly from the ASD group on most measures. However, there was significant heterogeneity among the late-diagnosed cases. Seven showed very little evidence of ASD in preschool, whereas 7 demonstrated subtle, subthreshold symptomatology.Conclusion Some children with ASD might present with a subtle phenotype early in life or show a prolonged time course of symptom development. This emphasizes the need for screening and surveillance schedules that extend past 36 months and continued evaluation of any child who presents with atypical early development and/or high-risk status. The findings also shed light on reasons why the mean age of ASD diagnosis remains older than 4 years.
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Challenges to widespread adoption of the best validated instruments, the Autism Diagnostic Interview-Revised (ADI-R) and the Autism Diagnostic Observation Schedule-2nd Edition (ADOS-2), include the cost of the instruments and training, the time required to complete them, and the need for substantial training to use them reliably.
“These challenges include the cost of the instruments and training, the time required to complete them and the need for substantial training to use them reliably 132”
From Autism spectrum disorder (2020) · cites this paper as [132]
The Method > Measures section says that clinical examiners administering the ADOS were trained to research-reliability standards. It does not say that substantial training is required, or discuss instrument and training costs, completion time, or barriers to widespread adoption of the ADI-R and ADOS-2. No page number is available in our copy. (LLM, conf=0.78)
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- Authors
- Ozonoff, S., Young, G. S., Brian, J., Charman, T., Shephard, E., Solish, A., & Zwaigenbaum, L.
- Affiliations
- University of California, Davis (US)
- University of Toronto (CA)
- King's College London (GB)
- Bloorview Research Institute (CA)
- University of Alberta (CA)
- Corresponding author
- Ozonoff, Sally
- ORCID
- Venue
- Journal of the American Academy of Child & Adolescent Psychiatry
- Publisher
- Elsevier BV
- Published
- 2018-11
- Volume
- 57
- Issue
- 11
- Pages
- 849-857.e2
- ISSN
- 0890-8567 (ISSN-L)
- PMC
- PMC6235445
- OpenAlex
- W2890969706
- Cited by
- 113
- References
- 28
- Citations by year
- 2026: 7 · 2025: 15 · 2024: 11 · 2023: 13 · 2022: 18 · 2021: 19 · 2020: 18 · 2019: 10 · 2018: 2
- FWCI
- 7.30
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Journal of the American Academy of Child & Adolescent Psychiatry (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- eScholarship (California Digital Library) (submittedVersion)
- Research Portal (King's College London) (submittedVersion, cc-by-nc-nd)
- Funders
- National Institutes of Health (R01s MH068398, MH109541)
- Canadian Institutes of Health Research
- Kids Brain Health Network
- Ontario Mental Health Foundation
- UK Medical Research Council (G0701484, MR/K021389/1)
- Topics
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Health Sciences › Medicine › Psychiatry and Mental health › Child Nutrition and Feeding Issues
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Genetics and Neurodevelopmental Disorders
- Keywords
- autism spectrum disorder, delayed diagnosis, diagnostic stability, symptom onset, child development monitoring, screening schedules, siblings of autistic children, vulnerable children, preschool assessment, longitudinal follow-up
- MeSH terms
- Autism Spectrum Disorder, Child, Female, Humans, Male, Phenotype, Population Surveillance, Prospective Studies, Risk, Prevalence, Siblings
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