Abstract
We estimated autism spectrum disorder (ASD) prevalence in 7–9 year-old children in 2015 using data from three nationwide health registry systems (Denmark, Finland, Iceland) and two French population-based regional registries. Prevalence ranged from 0.48% in South-East France to 3.13% in Iceland (South-West France: 0.73%, Finland: 0.77%, Denmark: 1.26%). Male/female ratios ranged from 3.3 in Finland to 5.4 in South-West France. Between 12% (Denmark) and 39% (South-West France) of cases were diagnosed with intellectual disability. The variations in population-based ASD prevalence across four European countries with universal health care practices likely reflect variation in detection, referral and diagnosis practices and autism awareness across these areas. Using established population-based data systems is an efficient approach to monitor ASD prevalence trends over time.
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References
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (DSM-5) (5th ed.). Washington, DC: American Psychiatric Publishing.
Arvidsson, O., Gillberg, C., Lichtenstein, P., & Lundstrom, S. (2018). Secular changes in the symptom level of clinically diagnosed autism. Journal of Child Psychology and Psychiatry,59(7), 744–751. https://doi.org/10.1111/jcpp.12864.
Atladottir, H. O., Gyllenberg, D., Langridge, A., Sandin, S., Hansen, S. N., Leonard, H., et al. (2015). The increasing prevalence of reported diagnoses of childhood psychiatric disorders: A descriptive multinational comparison. European Child and Adolescent Psychiatry,24(2), 173–183. https://doi.org/10.1007/s00787-014-0553-8.
Baio, J., Wiggins, L., Christensen, D. L., Maenner, M. J., Daniels, J., Warren, Z., et al. (2018). Prevalence of autism spectrum disorder among children aged 8 years: Autism and developmental disabilities monitoring network, 11 Sites, United States, 2014. Morbidity and Mortality Weekly Report Surveillance Summaries,67(6), 1–23. https://doi.org/10.15585/mmwr.ss6706a1.
Cauvet, E., Van’t Westeinde, A., Toro, R., Kuja-Halkola, R., Neufeld, J., Mevel, K., et al. (2019). Sex differences along the autism continuum: A twin study of brain structure. Cerebral Cortex,29(3), 1342–1350. https://doi.org/10.1093/cercor/bhy3035253193.
Centers for Disease Control and Prevention. (2009). Prevalence of autism spectrum disorders: Autism and developmental disabilities monitoring network, United States, 2006. Morbidity and Mortality Weekly Report Surveillance Summaries,58, 1–20.
Dean, M., Harwood, R., & Kasari, C. (2017). The art of camouflage: Gender differences in the social behaviors of girls and boys with autism spectrum disorder. Autism,21(6), 678–689. https://doi.org/10.1177/13623613166718451362361316671845.
Fombonne, E. (2018). Editorial: The rising prevalence of autism. Journal of Child Psychology and Psychiatry,59(7), 717–720. https://doi.org/10.1111/jcpp.12941.
Hinkka-Yli-Salomaki, S., Banerjee, P. N., Gissler, M., Lampi, K. M., Vanhala, R., Brown, A. S., et al. (2014). The incidence of diagnosed autism spectrum disorders in Finland. Nordic Journal of Psychiatry,68(7), 472–480. https://doi.org/10.3109/08039488.2013.861017.
Idring, S., Lundberg, M., Sturm, H., Dalman, C., Gumpert, C., Rai, D., et al. (2015). Changes in prevalence of autism spectrum disorders in 2001–2011: Findings from the Stockholm youth cohort. Journal of Autism and Developmental Disorders,45(6), 1766–1773. https://doi.org/10.1007/s10803-014-2336-y.
Kogan, M. D., Vladutiu, C. J., Schieve, L. A., Ghandour, R. M., Blumberg, S. J., Zablotsky, B., et al. (2018). The prevalence of parent-reported autism spectrum disorder among US children. Pediatrics. https://doi.org/10.1542/peds.2017-4161.
Kulage, K. M., Goldberg, J., Usseglio, J., Romero, D., Bain, J. M., & Smaldone, A. M. (2019). How has DSM-5 affected autism diagnosis? A 5-year follow-up systematic literature review and meta-analysis. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-019-03967-5.
Lampi, K. M., Sourander, A., Gissler, M., Niemela, S., Rehnstrom, K., Pulkkinen, E., et al. (2010). Brief report: Validity of Finnish registry-based diagnoses of autism with the ADI-R. Acta Pediatrica,99(9), 1425–1428. https://doi.org/10.1111/j.1651-2227.2010.01835.x.
Lauritsen, M. B., Jorgensen, M., Madsen, K. M., Lemcke, S., Toft, S., Grove, J., et al. (2010). Validity of childhood autism in the Danish Psychiatric Central Register: Findings from a cohort sample born 1990–1999. Journal of Autism and Developmental Disorders,40(2), 139–148. https://doi.org/10.1007/s10803-009-0818-0.
Lundstrom, S., Reichenberg, A., Anckarsater, H., Lichtenstein, P., & Gillberg, C. (2015). Autism phenotype versus registered diagnosis in Swedish children: Prevalence trends over 10 years in general population samples. British Medical Journal,350, h1961. https://doi.org/10.1136/bmj.h1961.
Lyall, K., Croen, L., Daniels, J., Fallin, M. D., Ladd-Acosta, C., Lee, B. K., et al. (2017). The changing epidemiology of autism spectrum disorders. Annual Review of Public Health,38, 81–102. https://doi.org/10.1146/annurev-publhealth-031816-044318.
Morales-Hidalgo, P., Roige-Castellvi, J., Hernandez-Martinez, C., Voltas, N., & Canals, J. (2018). Prevalence and characteristics of autism spectrum disorder among Spanish school-age children. Journal of Autism and Developmental Disorders,48(9), 3176–3190. https://doi.org/10.1007/s10803-018-3581-210.1007/s10803-018-3581-2.
Myers, S. M., Voigt, R. G., Colligan, R. C., Weaver, A. L., Storlie, C. B., Stoeckel, R. E., et al. (2019). Autism spectrum disorder: Incidence and time trends over two decades in a population-based birth cohort. Journal of Autism and Developmental Disorders,49(4), 1455–1474. https://doi.org/10.1007/s10803-018-3834-010.1007/s10803-018-3834-0.
Narzisi, A., Posada, M., Barbieri, F., Chericoni, N., Ciuffolini, D., Pinzino, M., et al. (2018). Prevalence of autism spectrum disorder in a large Italian catchment area: A school-based population study within the ASDEU project. Epidemiology and Psychiatric Sciences. https://doi.org/10.1017/S2045796018000483S2045796018000483.
Saemundsen, E., Magnusson, P., Georgsdottir, I., Egilsson, E., & Rafnsson, V. (2013). Prevalence of autism spectrum disorders in an Icelandic birth cohort. British Medical Journal Open. https://doi.org/10.1136/bmjopen-2013-002748e002748.
Salomone, E., Charman, T., McConachie, H., & Warreyn, P. (2016). Child’s verbal ability and gender are associated with age at diagnosis in a sample of young children with ASD in Europe. Child: Care, Health and Development,42(1), 141–145. https://doi.org/10.1111/cch.12261.
Schendel, D. E., & Thorsteinsson, E. (2018). Cumulative incidence of autism into adulthood for birth cohorts in Denmark, 1980–2012. Journal of American Medical Association,320(17), 1811–1813. https://doi.org/10.1001/jama.2018.113282712532.
van Bakel, M. M., Delobel-Ayoub, M., Cans, C., Assouline, B., Jouk, P. S., Raynaud, J. P., et al. (2015). Low but increasing prevalence of autism spectrum disorders in a French area from register-based data. Journal of Autism and Developmental Disorders,45(10), 3255–3261. https://doi.org/10.1007/s10803-015-2486-610.1007/s10803-015-2486-6.
Xu, G., Strathearn, L., Liu, B., & Bao, W. (2018). Prevalence of autism spectrum disorder among US children and adolescents, 2014–2016. Journal of American Medical Association,319(1), 81–82. https://doi.org/10.1001/jama.2017.178122667712.
Xu, G., Strathearn, L., Liu, B., O’Brien, M., Kopelman, T. G., Zhu, J., et al. (2019). Prevalence and treatment patterns of autism spectrum disorder in the United States, 2016. Journal of American Medical Association Pediatrics,173(2), 153–159. https://doi.org/10.1001/jamapediatrics.2018.42082716402.
Acknowledgments
The Autism Spectrum Disorders in the European Union project (ASDEU) was supported by the European Parliament and managed by DG-SANTÉ, European Commission (Grant no. SANCO/2014/C2/035). The Icelandic team would like to thank the following specialists for their assistance in case finding: Haukur Orvar Palmason, Gyda Sigurlaug Haraldsdottir, Hafdis Bjorg Kjartansdottir, and Ingólfur Einarsson.
Funding
Funding for this project was provided by ASDEU [The Autism Spectrum Disorders in the European Union project ASDEU was supported by the European Parliament and managed by DG-SANTÉ, European Commission (Grant No. SANCO/2014/C2/035)] and, in Denmark, an unrestricted grant from the Lundbeck Foundation Initiative for Integrative Psychiatric Research (iPSYCH).
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MDA participated in the conception, design and coordination of the study and drafted the manuscript; ES, MG, AE, CA and DS participated in the conception, design and coordination of the study and helped to draft the manuscript; IM, HE, VR, DK, ET, KMA and BR participated in analysis and interpretation of the data and helped to draft the manuscript; All authors read and approved the final manuscript.
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In each country, procedures have been performed in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. In Denmark, data approval for this project was established through iPSYCH (iPSYCH: Lundbeck Foundation Initiative for Integrative Psychiatric Research) which was approved by the Danish Scientific Ethics Committee, the Danish Health Data Authority, and the Danish Data Protection Agency. In Finland, the register keepers (THL Finnish Institute for Health and Welfare and KELA National Social Insurance Institution) gave the permission to use their administrative register data in this study after consulting the data protection authority. The study received a positive statement from the Ethical Review Board Committee of the Hospital District of Northern Ostrobothnia. In France, both registers have obtained approval by the French national ethical committees (Commission Nationale de l’Informatique et des Libertés, CNIL) for the collection and processing of nominal data. In Iceland, the National Bioethics Committee (VSNb2015110005/03.1) and the Data Protection Authority approved the study.
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In Denmark, Finland and Iceland, since the study was based exclusively on register data and did not require contact with the registered persons, according to Danish, Finnish and Icelandic laws, no written informed consent was required. In France, according to the French regulation, registries require parental consent to access diagnostic records and informed consent was obtained from parents of all individual participants included in the study.
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Delobel-Ayoub, M., Saemundsen, E., Gissler, M. et al. Prevalence of Autism Spectrum Disorder in 7–9-Year-Old Children in Denmark, Finland, France and Iceland: A Population-Based Registries Approach Within the ASDEU Project. J Autism Dev Disord 50, 949–959 (2020). https://doi.org/10.1007/s10803-019-04328-y
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DOI: https://doi.org/10.1007/s10803-019-04328-y