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Autism spectrum disorders in young children: effect of changes in diagnostic practices
Abstract
BACKGROUND: It is unclear whether the increase in autism over the past two decades is a real increase or due to changes in diagnosis and ascertainment of autism spectrum disorders (ASDs), which include autism, Asperger syndrome and pervasive developmental disorder not otherwise specified (PDD-NOS). The aim of this study was to examine the trends in ASD over time in Western Australia (WA) and the possible effects and contribution of changes in diagnostic criteria, age at diagnosis, eligibility for service provision based on ASD diagnoses and changes in diagnostic practices. METHODS: A population-based study was conducted among the cohort of children born in WA between 1983 and 1999 and diagnosed with ASD between the age of 2 and 8 years up to December 31, 2004. The trend in ASD diagnosis over the study period was assessed by investigating birth cohort and period effects, and examining whether these were modified by age of diagnosis. ASD diagnosis corresponding with changes in diagnostic criteria, funding and service provision over time were also investigated. A subgroup analysis of children aged <or=5 years was also conducted to examine trends in the incidence and age of diagnosis of ASD and intellectual disability (ID) and to investigate the role of changes in diagnostic practices. RESULTS: The overall prevalence of ASD among children born between 1983 and 1999 and diagnosed by age 8 was 30 per 10,000 births with the prevalence of autism comprising 21 per 10,000 births. The prevalence of ASD increased by 11.9% per annum, from 8 cases per 10,000 births in 1983 to 46 cases per 10,000 births in 1999. The annual incidence of ASD, based on newly diagnosed ASD cases in each year from 1985 to 2002, increased over the study period. The increase in incidence of ASD appeared to coincide with changes in diagnostic criteria and availability of funding and services in WA, particularly for children aged <5 years. The age-specific rates of autism and PDD-NOS increased over time and the median age of diagnosis for autism decreased from 4 to 3 years of age throughout the 1990s. For children aged <or=5 years the incidence of ASD diagnosis increased significantly from 1992, with an average annual increase of 22%. Similar findings were found for autism. In the corresponding years the incidence of diagnosis of severe ID fell by 10% per annum and mild-moderate ID increased by 3% per annum. CONCLUSIONS: The rise in incidence of all types of ASDs by year of diagnosis appears to be related to changes in diagnostic and service provision practices in WA. In children aged
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“A change in the way records are coded (e.g., upcoding or changes in coding systems, as described above) may alter the study population [63,75,76].”
From The Reporting of Studies Conducted Using Observational Routinely-Collected Health Data (RECORD) statement. (2015) · cites this paper as [75]
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ResultTrends in the Diagnosis of Rett Syndrome in Australia
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“Investigators have noted that prevalence of ASD has risen dramatically over last decade and a half and most increase in rates has been reported in the developed countries [12, 28].”
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InfluentialA Comparison of Autism Prevalence Trends in Denmark and Western Australia
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“The DNPR records all inpatient admissions to psychiatric hospitals and psychiatric wards in general hospitals in Denmark since 1969, and also all outpatient contacts since 1995 ( Munk-Jorgensen and Mortensen 1997 ).”
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“These fi ndings have implications for future policy, particularly with regard to establishing a national standard in ASD diagnosis, to ensure an equitable process for families and individuals with ASD.”
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“Most studies estimate that the increased dual diagnosis of ID and ASD accounts for a small proportion of the increased prevalence, with the majority accounted for by broadening criteria to include “higher-functioning” individuals (King and Bearman, 2009; Lundström et al., 2015; Nassar et al., 2009).”
Trends in the Prevalence of Autism on the Basis of Special Education Data
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Stability of Autism Spectrum Disorders Symptoms over Time
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“Furthermore, other diagnoses such as developmental language delay can also be prognostic of resistance to symptom remission ( Mouridsen and Hauschild 2009 ).”
BackgroundLow but Increasing Prevalence of Autism Spectrum Disorders in a French Area from Register-Based Data
van Bakel, M. M. E., Delobel-Ayoub, M., Cans, C., Assouline, B., Jouk, P.-S., Raynaud, J.-P., & Arnaud, C. (2015) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-015-2486-6 · Cited by 56
“2008) or accretion (King and Bearman 2009), earlier diagnosis (Nassar et al. 2009), and possibly true rises in incidence due to changes in the risk factors in the society (Hultman et al.”
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“The prevalence of autistic disorder reported in many studies in the last decade has been estimated to be about 20 in 10,000 (Gillberg et al., 2006; Nassar et al., 2009), and the estimated rate for all the autism spectrum disorders (ASD) is about 1 in 88 (Centers for Disease Control and Prevention…”
BackgroundCE: From the CDC: Understanding Autism Spectrum Disorder
Christensen, D., & Zubler, J. M. (2020) · AJN American Journal of Nursing · doi:10.1097/01.naj.0000718628.09065.1b · Cited by 56
The incidence, prevalence and clinical features ofMECP2duplication syndrome in Australian children
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Self-citationRecent update of autism spectrum disorders
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“In the service/benefits-based registry systems there are potential sources of variation due to changes in the reporting process over time, or by age of child or specific ASD diagnoses that are tied to service/benefits (Nassar et al. 2009).”
BackgroundSelf-citationCan Autism Be Diagnosed with Artificial Intelligence? A Narrative Review
Chaddad, A., Li, J., Lu, Q., Li, Y., Okuwobi, I. P., Tanougast, C., Desrosiers, C., & Niazi, T. M. (2021) · Diagnostics · doi:10.3390/diagnostics11112032 · Cited by 43
“As a result, the overgrowth of the temporal and frontal lobes is an indicator of ASD [8,43,44].”
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“Literature shows that the dramatically increase rate of ASD risen in developed countries most of the time [8].”
BackgroundImpact of DSM-5 on epidemiology of Autism Spectrum Disorder
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“To receive these resources, an ASD diagnosis may have been emphasized rather than other neurodevelopmental conditions or intellectual disability (Croen et al., 2002; Nassar et al., 2009; Shattuck, 2006).”
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“All rights reserved. doi:10.1016/j.rasd.2011.09.006 The observed prevalence of ASD has increased over the past few decades (Leonard et al., 2010; Lin, Hung, Lin, & Lai, 2011; Lin, Lin, & Wu, 2009; Lin, Sung, et al., 2011; Lingam et al., 2003; Matson & Kozlowski, 2011; Nassar et al., 2009).”
BackgroundInfluentialSelf‐reported impact of developmental stuttering across the lifespan
Boyce, J. O., Jackson, V. E., van Reyk, O., Parker, R., Vogel, A. P., Eising, E., Horton, S. E., Gillespie, N. A., Scheffer, I. E., Amor, D. J., et al. (2022) · Developmental Medicine & Child Neurology · doi:10.1111/dmcn.15211 · Cited by 40
“Rates of diagnoses for many of these conditions have also increased over time.(35) Neuropsychiatric diagnoses were reported in 22% of adults with stuttering.”
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BackgroundExamination of the prevalence of stimulus overselectivity in children with ASD
Rieth, S. R., Stahmer, A. C., Suhrheinrich, J., & Schreibman, L. (2014) · Journal of Applied Behavior Analysis · doi:10.1002/jaba.165 · Cited by 28
“The broadening of the definition of ASD has played a large role in altering the population of children who receive services for the disorder (Fombonne, 2001; Kabot, Masi, & Segal, 2003; Nassar et al., 2009; Steyaert & De la Marche, 2008; Wolff, 2004).”
Bourke, J., Wong, K., & Leonard, H. (2018) · BMJ Open · doi:10.1136/bmjopen-2017-019113 · Cited by 28
“17 24 25 The effect of removing these conditions from our HMDS search list would have been to slightly increase the sensitivity and positive predictive value of using HMDS to identify ID. Children with a cause of ID commonly known to be associated with ID, such as Down syndrome or Prader-Willi…”
MethodSelf-citationFairthorne, J., Hammond, G., Bourke, J., de Klerk, N. H., & Leonard, H. (2015) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-015-2594-3 · Cited by 26
“In Western Australia (WA), ASD affects 3 per 1000 (Nassar et al. 2009) and is less common than ID which affects 14 per 1000 (Leonard et al.”
Self-citationOral Health Status of Children with Autism in Central Italy
Bossù, M., Trottini, M., Corridore, D., Giorgio, G. D., Sfasciotti, G. L., Palaia, G., Ottolenghi, L., Polimeni, A., & Carlo, S. D. (2020) · Applied Sciences · doi:10.3390/app10072247 · Cited by 25
“While some people with ASD can live independently, others have severe disabilities and require life-long care and support [2].”
BackgroundEvidence of a reduction over time in the behavioral severity of autistic disorder diagnoses
Whitehouse, A., Cooper, M. N., Bebbington, K. R., Alvares, G. A., Lin, A. P., Wray, J. A., & Glasson, E. J. (2017) · Autism Research · doi:10.1002/aur.1740 · Cited by 27
“…greater awareness of ASD among clinicians and the community [Charman 2002; Leonard et al., 2010] and the introduction of Government funded services specific to individuals with a diagnosis of Autistic Disorder [Gurney et al., 2003; Leonard et al., 2010; Mandell & Palmer, 2005; Nassar et al., 2009].”
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Epidemiology of Autism Spectrum Disorders
Presmanes Hill, A., Zuckerman, K., & Fombonne, E. (2015) · Translational Approaches to Autism Spectrum Disorder · doi:10.1007/978-3-319-16321-5_2 · Cited by 94
Neonatal jaundice and autism spectrum disorder: a systematic review and meta-analysis
Kujabi, M. L., Petersen, J. P., Pedersen, M. V., Parner, E. T., & Henriksen, T. B. (2021) · Pediatric Research · doi:10.1038/s41390-020-01272-x · Cited by 23
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“5,5] 425 100 34,9 [31,7–38,4]”
InfluentialIntellectual disability and autism prevalence in Western Australia: impact of the NDIS
Bourke, J., Sanders, R., Jones, J., Ranjan, M., Wong, K., & Leonard, H. (2024) · Frontiers in Psychiatry · doi:10.3389/fpsyt.2024.1359505 · Cited by 20
“The prevalence of ASD worldwide has increased over time with considerable variability depending on methodology, geographical location, and sources of ascertainment (13 – 16).”
BackgroundInfluentialSelf-citationAbdullahi, I., Wong, K., Bebbington, K. R., Mutch, R. C., de Klerk, N. H., Cherian, S., Downs, J. A., Leonard, H., & Glasson, E. J. (2019) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-019-04068-z · Cited by 20
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The modified checklist for autism in Turkish toddlers: A different cultural adaptation sample
Kondolot, M., Özmert, E. N., Öztop, D. B., Mazıcıoğlu, M. M., Gümüş, H., & Elmalı, F. (2015) · Research in Autism · doi:10.1016/j.rasd.2015.10.006 · Cited by 20
Épidémiologie de l’autisme : où en sommes-nous ?
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“Since the 1980s, the prevalence of autism diagnosis has been increasing both internationally (Centers for Disease Control and Prevention, 2012) and in Australia (Nassar et al., 2009).”
BackgroundInfluentialSelf-citationReport of audit of disability research in Australia
Llewellyn, G. M. (2014) · Cited by 17
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“Receiving an AS diagnosis at a later age could represent a last resort diagnosis in individuals already presenting a complex psychiatric profile and/or reflect changes in diagnostic practices in the last decades (Nassar et al., 2009).”
BackgroundAutism Spectrum Disorders: The Role of Genetics in Diagnosis and Treatment
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Could head circumference be used to screen for autism in young males with developmental delay?
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“One interpretation for this result may be due to the increasing number of children or adolescents treated for autism spectrum disorder or attention-deficit/hyperactivity disorder that have their onset in childhood [13, 44].”
BackgroundAbd, S., Hameed, E., Ramadan, E., & Elshair, I. H. H. (2012) · Cited by 7
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“Though prevalence estimates continue to increase (Atladottir, 2007; Centers for Disease Control and Prevention, 2012, 2014; Kogan et al., 2009; Nassar et al., 2009) research efforts have largely focused on the younger population of individuals with autism spectrum disorder (ASD) (Hurlbutt &…”
Neonatal Jaundice and Autism: Precautionary Principle Invocation Overdue
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“Additionally, some data suggest a decrease in more severe and an increase in less severe cases [190]; this is consistent with Hansen et al.”
BackgroundResultEvolving Understanding of the Relationship Between Mercury Exposure and Autism
Lewandowski, T. A. (2010) · NATO science for peace and security series. C, Environmental security · doi:10.1007/978-94-007-0253-0_4 · Cited by 5
“A number of researchers have also suggested that a decrease in the stigma associated with autism, coupled with an increase in available special education services for autistic children and better screening programs for early detection, have lead to a greater willingness for psychiatrists and psychologists to diagnosis…”
Background
Metadata
- Authors
- Nassar, N., Dixon, G., Bourke, J., Bower, C., Glasson, E., de Klerk, N., & Leonard, H.
- Affiliations
- The Kids Research Institute Australia (AU)
- Corresponding author
- Leonard, H.
- Venue
- International Journal of Epidemiology
- Publisher
- Oxford University Press (OUP)
- Published
- 2009-09-07
- Volume
- 38
- Issue
- 5
- Pages
- 1245-1254
- ISSN
- 0300-5771 (ISSN-L)
- 1464-3685
- OpenAlex
- W2097406778
- Cited by
- 162
- References
- 34
- Citations by year
- 2026: 3 · 2025: 3 · 2024: 3 · 2023: 5 · 2022: 10 · 2021: 8 · 2020: 11 · 2019: 10 · 2018: 9 · 2017: 6 · 2016: 12 · 2015: 14 · 2014: 18 · 2013: 7 · 2012: 13
- FWCI
- 6.94
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- International Journal of Epidemiology (publishedVersion)
- PubMed (publishedVersion)
- UWA Profiles and Research Repository (UWA) (submittedVersion)
- 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, Asperger syndrome, pervasive developmental disorder not otherwise specified, age at diagnosis, diagnostic criteria revision, diagnostic practices, intellectual disability, service eligibility, Western Australia, young children
- MeSH terms
- Autistic Disorder, Child, Child, Preschool, Delivery of Health Care, Diagnosis, Differential, Female, Humans, Male, Medical Record Linkage, Western Australia, Prevalence, Practice Guidelines as Topic, Asperger Syndrome
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