Diagnostic change and the increased prevalence of autism
Open accessAbstract
BACKGROUND: Increased autism prevalence rates have generated considerable concern. However, the contribution of changes in diagnostic practices to increased prevalence rates has not been thoroughly examined. Debates over the role of diagnostic substitution also continue. California has been an important test case in these controversies. The objective of this study was to determine the extent to which the increased prevalence of autism in California has been driven by changes in diagnostic practices, diagnostic substitution and diagnostic accretion. METHODS: Retrospective case record examination of 7003 patients born before 1987 with autism who were enrolled with the California Department of Developmental Services between 1992 and 2005 was carried out. Of principal interest were 631 patients with a sole diagnosis of mental retardation (MR) who subsequently acquired a diagnosis of autism. The outcome of interest was the probability of acquiring a diagnosis of autism as a result of changes in diagnostic practices was calculated. The probability of diagnostic change is then used to model the proportion of the autism caseload arising from changing diagnostic practices. RESULTS: The odds of a patient acquiring an autism diagnosis were elevated in periods in which the practices for diagnosing autism changed. The odds of change in years in which diagnostic practices changed were 1.68 [95% confidence interval (CI) 1.11-2.54], 1.55 (95% CI 1.03-2.34), 1.58 (95% CI 1.05-2.39), 1.82 (95% CI 1.23-2.7) and 1.61 (95% CI 1.09-2.39). Using the probability of change between 1992 and 2005 to generalize to the population with autism, it is estimated that 26.4% (95% CI 16.25-36.48) of the increased autism caseload in California is uniquely associated with diagnostic change through a single pathway--individuals previously diagnosed with MR. CONCLUSION: Changes in practices for diagnosing autism have had a substantial effect on autism caseloads, accounting for one-quarter of the observed increase in prevalence in California between 1992 and 2005.
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The increase in the number of children reported to have ASD is due to the broadening of diagnostic criteria, first in DSM-IIIR and then in DSM-IV, particularly for PDD-NOS.
“it has been suggested that the increase in the number of children reported to have ASD is due to the broadening of diagnostic criteria (King & Bearman 2009), first in DSM-IIIR (Am. Psychiatr. Assoc. 1987) and then in DSM-IV (Am. Psychiatr. Assoc. 1994), particularly for the subtype of pervasive developmental disorders-not otherwise specified (PDD-NOS).”
From Recent Advances in Autism Research as Reflected in DSM-5 Criteria for Autism Spectrum Disorder (2015) · cites this paper as King & Bearman 2009
The Discussion (p. 10) attributes 26.4% of the increased California autism caseload to changing diagnostic practices, substitution and accretion—not the entire increase to broadened criteria. The Introduction (p. 3) discusses DSM revisions, but the Discussion (p. 9) says the study could not adequately estimate effects for people with PDD-NOS alone. The source therefore supports a contribution from diagnostic change, not the claim’s full explanation or its PDD-NOS emphasis. (LLM, conf=0.88)
Experimental — accuracy not yet measuredFactors other than diagnostic drift likely account for more than one-half of new ASD cases.
“In fact, these studies suggest that factors other than diagnostic drift likely account for more than one-half of new cases.”
From DNA methylation: a mechanism linking environmental chemical exposures to risk of autism spectrum disorders? (2016) · cites this paper as [7]
Independent studies have concluded that the increasing incidence of ASD cannot be explained entirely by increased awareness, broadening of diagnostic criteria, or improved detection.
“Independent studies have reached the common conclusion that this trend cannot be explained in its entirety by increased awareness, broadening of diagnostic criteria, or improved detection of ASD [ 5–8 ].”
From DNA methylation: a mechanism linking environmental chemical exposures to risk of autism spectrum disorders? (2016) · cites this paper as [7]
Another study suggested that diagnostic substitution and better ascertainment explain only a part of the linear increase observed in the California registry.
“another study suggested that diagnostic substitution, especially for the most severe cases, and better ascertainment, especially for children at the less severe end of the spectrum, explain only a part of the linear increase observed in the California registry”
From Autism risk factors: genes, environment, and gene-environment interactions (2012) · cites this paper as [62]
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Research works printed but not linked: 16
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Self-citation
- Authors
- King, M., & Bearman, P.
- Affiliations
- Columbia University (US)
- Corresponding author
- Bearman, Peter
- Venue
- International Journal of Epidemiology
- Publisher
- Oxford University Press (OUP)
- Published
- 2009-09-07
- Volume
- 38
- Issue
- 5
- Pages
- 1224-1234
- ISSN
- 0300-5771 (ISSN-L)
- 1464-3685
- PMC
- PMC2800781
- OpenAlex
- W2164883603
- Cited by
- 481
- References
- 0
- Citations by year
- 2026: 18 · 2025: 20 · 2024: 6 · 2023: 11 · 2022: 20 · 2021: 33 · 2020: 33 · 2019: 25 · 2018: 34 · 2017: 32 · 2016: 28 · 2015: 44 · 2014: 38 · 2013: 27 · 2012: 50
- FWCI
- 18.07
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- International Journal of Epidemiology (publishedVersion)
- Europe PMC (PubMed Central) (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- Columbia Academic Commons (Columbia University)
- Funders
- National Institutes of Health (DP1OD003635)
- Topics
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Down syndrome and intellectual disability research
- Health Sciences › Medicine › Psychiatry and Mental health › Child Nutrition and Feeding Issues
- Keywords
- autism spectrum disorder, autism prevalence, diagnostic change, intellectual disability, California, developmental services
- MeSH terms
- Adolescent, Autistic Disorder, California, Child, Diagnosis, Differential, Female, Humans, Male, Intellectual Disability, Retrospective Studies, Prevalence, Confidence Intervals, Practice Guidelines as Topic
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