University of Oulu

Guillon, Q., Baduel, S., Bejarano-Martín, Á., Canal-Bedia, R., MagÁn-Maganto, M., FernÁndez-Álvarez, C., Martín-Cilleros, M. V., SÁnchez-Gómez, M. C., García-Primo, P., Rose-Sweeney, M., Boilson, A., LinertovÁ, R., Roeyers, H., Van der Paelt, S., Schendel, D., Warberg, C. K., Cramer, S., Narzisi, A., Muratori, F., … Rogé, B. (2022). Determinants of satisfaction with the detection process of autism in Europe: Results from the ASDEU study. Autism, 26(8), 2136–2150.

Determinants of satisfaction with the detection process of autism in Europe : results from the ASDEU study

Saved in:
Author: Guillon, Quentin1; Baduel, Sophie1; Bejarano-Martín, Álvaro2;
Organizations: 1Université Toulouse Jean Jaurès, France
2Universidad de Salamanca, Spain
3Johannes Kepler University, Austria
4Dublin City University, Ireland
5Canary Island Foundation for Health Research (Fundación Canaria de Investigación Sanitaria/FUNCANIS) and Health Service Research Network for Chronic Diseases (Red de Investigación en Servicios de Salud en Enfermedades Crónicas/REDISSEC), Spain
6Ghent University, Belgium
7iPSYCH, The Lundbeck Foundation Initiative for Integrative Psychiatric Research, Denmark
8Aarhus University, Denmark
9Drexel University, USA
10IRCCS Stella Maris Foundation, Italy
11University of Pisa, Italy
12Istituto Superiore di Sanità, Italy
13University of Oulu, Finland
14Oulu University Hospital, Finland
15University of Tampere, Finland
16States Diagnostic and Counselling Centre, Iceland
17Victor Babes – National Institute of Pathology, Romania
18Instituto Nacional de Saúde Doutor Ricardo Jorge, Portugal
19Medical University of Vienna, Austria
20University Medical Centre Göttingen, Germany
21University of Warsaw, Poland
22National Autistic Society (NAS), UK
23Carlos III Institute of Health, Spain
Format: article
Version: accepted version
Access: open
Online Access: PDF Full Text (PDF, 2.3 MB)
Persistent link:
Language: English
Published: SAGE Publications, 2022
Publish Date: 2023-03-01


Satisfaction with the detection process of autism and its determinants was investigated using data from the Autism Spectrum Disorder in the European Union (2015–2018) network. A total of 1342 family members, including 1278 parents, completed an online survey collecting information about their experience and satisfaction with the early detection of autism in their child. Overall, the level of satisfaction varied considerably from one respondent to another. Difficulty in finding information about detection services, lack of professional guidance and support in response to first concerns, finding a diagnostic service on one’s own, and a delay of more than 4 months between the confirmation of concerns and the first appointment with a specialist were all experiences individually associated with greater odds of being less satisfied. Using a dominance analysis approach, we further identified professional guidance and support in response to first concerns as the most important predictor of the level of satisfaction. These findings highlight the aspects of the process that need to be improved to enhance the experience of the detection process and are therefore relevant to guide health administrations toward actions to be implemented to this effect.

see all

Series: Autism
ISSN: 1362-3613
ISSN-E: 1461-7005
ISSN-L: 1362-3613
Volume: 26
Issue: 8
Pages: 2136 - 2150
DOI: 10.1177/13623613221080318
Type of Publication: A1 Journal article – refereed
Field of Science: 3123 Gynaecology and paediatrics
3124 Neurology and psychiatry
Funding: This study was funded by the European Parliament and managed by the European Union, DGSANCO, (Ref: SANCO/2014/C2/035).
Copyright information: Guillon, Quentin; Baduel, Sophie; Bejarano-Martín, Álvaro; Canal-Bedia, Ricardo; Magán-Maganto, María; et al., Determinants of satisfaction with the detection process of autism in Europe : results from the ASDEU study, Autism (Volume 26, Issue 8) pp. 2136–2150. Copyright © 2022 The Author(s). DOI: 10.1177/13623613221080318.