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

Delobel-Ayoub, M.; Saemundsen, E.; Gissler, M.; Ego, A.; Moilanen, I.; Ebeling, H.; Rafnsson, V.; Klapouszczak, D.; Thorsteinsson, E.; Arnaldsdóttir, K. M.; Roge, B.; Arnaud, C.; Schendel, D.

doi:10.1007/s10803-019-04328-y

Original Paper
Published: 07 December 2019

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

M. Delobel-Ayoub ORCID: orcid.org/0000-0002-0090-8313^1,2,3,18,
E. Saemundsen^4,5,
M. Gissler^6,7,8,
A. Ego^9,10,
I. Moilanen^11,12,
H. Ebeling^11,12,
V. Rafnsson⁵,
D. Klapouszczak^1,2,3,
E. Thorsteinsson^13,14,
K. M. Arnaldsdóttir¹⁵,
B. Roge¹⁶,
C. Arnaud^1,2,3 &
D. Schendel^13,14,17

Journal of Autism and Developmental Disorders volume 50, pages 949–959 (2020)Cite this article

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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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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).

Author information

Authors and Affiliations

Inserm UMR 1027, Toulouse, France
M. Delobel-Ayoub, D. Klapouszczak & C. Arnaud
Université de Toulouse III, Toulouse, France
M. Delobel-Ayoub, D. Klapouszczak & C. Arnaud
CHU Toulouse, Registre des Handicaps de l’Enfant en Haute-Garonne, Toulouse, France
M. Delobel-Ayoub, D. Klapouszczak & C. Arnaud
State Diagnostic and Counselling Centre, Kópavogur, Iceland
E. Saemundsen
Faculty of Medicine, University of Iceland, Reykjavík, Iceland
E. Saemundsen & V. Rafnsson
Information Services Department, THL Finnish Institute for Health and Welfare, Helsinki, Finland
M. Gissler
Research Centre for Child Psychiatry, University of Turku, Turku, Finland
M. Gissler
Department of Neurobiology, Care Sciences and Society, Karolinska Institute, Stockholm, Sweden
M. Gissler
Public Health Department of University Hospital of Grenoble, University of Grenoble Alpes, CNRS, Grenoble, France
A. Ego
Inserm CIC U1406, Grenoble, France
A. Ego
University of Oulu, Oulu, Finland
I. Moilanen & H. Ebeling
Oulu University Hospital, Oulu, Finland
I. Moilanen & H. Ebeling
iPSYCH, The Lundbeck Foundation Initiative for Integrative Psychiatric Research, Aarhus, Denmark
E. Thorsteinsson & D. Schendel
National Centre for Register-Based Research, Department of Economics and Business, Aarhus University, Aarhus, Denmark
E. Thorsteinsson & D. Schendel
Breidholt Service Centre, Reykjavík, Iceland
K. M. Arnaldsdóttir
CERPPS, Université Toulouse Jean-Jaurès, Toulouse, France
B. Roge
Department of Public Health, Aarhus University, Aarhus, Denmark
D. Schendel
Registre des Handicaps de l’Enfant en Haute-Garonne, CHU Toulouse-Inserm U1027, Hôpital Paule de Viguier, 330 Av. de Grande Bretagne, 31059, Toulouse Cedex 9, France
M. Delobel-Ayoub

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M. Delobel-Ayoub
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E. Saemundsen
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M. Gissler
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A. Ego
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I. Moilanen
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H. Ebeling
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V. Rafnsson
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D. Klapouszczak
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E. Thorsteinsson
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K. M. Arnaldsdóttir
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B. Roge
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C. Arnaud
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D. Schendel
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Contributions

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.

Corresponding author

Correspondence to M. Delobel-Ayoub.

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Conflict of interest

The authors declare that they have no conflict of interest.

Ethical Approval

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.

Informed Consent

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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Published: 07 December 2019
Issue Date: March 2020
DOI: https://doi.org/10.1007/s10803-019-04328-y

Keywords

Autism
Prevalence
Epidemiology
Registries
Health information systems