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Early Detection, Diagnosis and Intervention Services for Young Children with Autism Spectrum Disorder in the European Union (ASDEU): Family and Professional Perspectives

  • Álvaro Bejarano-Martín
  • Ricardo Canal-BediaEmail author
  • María Magán-Maganto
  • Clara Fernández-Álvarez
  • María Victoria Cilleros-Martín
  • María Cruz Sánchez-Gómez
  • Patricia García-Primo
  • Mary Rose-Sweeney
  • Andrew Boilson
  • Renata Linertová
  • Herbert Roeyers
  • Sara Van der Paelt
  • Diana Schendel
  • Christine Warberg
  • Susanne Cramer
  • Antonio Narzisi
  • Filippo Muratori
  • María Luisa Scattoni
  • Irma Moilanen
  • Anneli Yliherva
  • Evald Saemundsen
  • Sigríður Loa Jónsdóttir
  • Magdalena Efrim-Budisteanu
  • Aurora Arghir
  • Sorina Mihaela Papuc
  • Astrid Vicente
  • Celia Rasga
  • Bernadette Rogé
  • Quentin Guillon
  • Sophie Baduel
  • Johanna Xenia Kafka
  • Luise Poustka
  • Oswald D. Kothgassner
  • Rafal Kawa
  • Ewa Pisula
  • Tracey Sellers
  • Manuel Posada de la Paz
Original Paper

Abstract

Early services for ASD need to canvas the opinions of both parents and professionals. These opinions are seldom compared in the same research study. This study aims to ascertain the views of families and professionals on early detection, diagnosis and intervention services for young children with ASD. An online survey compiled and analysed data from 2032 respondents across 14 European countries (60.9% were parents; 39.1% professionals). Using an ordinal scale from 1 to 7, parents’ opinions were more negative (mean = 4.6; SD 2.2) compared to those of professionals (mean = 4.9; SD 1.5) when reporting satisfaction with services. The results suggest services should take into account child’s age, delays in accessing services, and active stakeholders’ participation when looking to improve services.

Keywords

Autism spectrum disorder Early detection Diagnosis Patient satisfaction Mental health services Survey 

Notes

Acknowledgments

The authors would like to thank all those who participated in this study, and express their gratitude for the European Parliament grant EC DG-SANTÉ 2014/C2/035.

Author Contributions

ABM, RCB, MMM and MP designed the study and wrote the manuscript; ABM, MP and RCB carried out the statistical analyses and interpreted the results; CFA and PGP collaborated in writing the manuscript. ABM, RCB, MMM, CJF and MP designed the surveys and MRS, AB, RL, HB, SVP, DS, CW, SC, AN, FM, MLS, IM, AY, ES, SLJ, MEB, AV, CR, BR, QG, SB, LP, JXK ODK, RK, EP and TS translated the surveys into their native languages and disseminated them in their respective countries. All authors have read and approved the final manuscript.

Funding

This study was funded by the Spanish Ministry of Economy and Competitiveness [Grant PSI2016-80575-R], the European Union, DGSANCO, [Ref.: SANCO/2014/C2/035], and the Spanish Ministry of Education, Culture and Sport [Ref.: BOE-B-2017-2646]. These funders had no role in the study design, the collection, analysis or interpretation of the data, the writing of the manuscript, or the decision to submit the paper for publication.

Compliance with Ethical Standards

Conflict of interest

The authors have no conflict of interest to declare.

Ethical Approval

Ethical approval was given by the Research Ethics Committee of the University of Salamanca, Spain (201700008785).

Supplementary material

10803_2019_4253_MOESM1_ESM.pdf (765 kb)
Supplementary material 1 (PDF 765 kb)
10803_2019_4253_MOESM2_ESM.pdf (777 kb)
Supplementary material 2 (PDF 777 kb)
10803_2019_4253_MOESM3_ESM.pdf (71 kb)
Supplementary material 3 (PDF 70 kb)

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Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2019

Authors and Affiliations

  • Álvaro Bejarano-Martín
    • 1
  • Ricardo Canal-Bedia
    • 1
    Email author
  • María Magán-Maganto
    • 1
  • Clara Fernández-Álvarez
    • 1
  • María Victoria Cilleros-Martín
    • 1
  • María Cruz Sánchez-Gómez
    • 1
  • Patricia García-Primo
    • 2
  • Mary Rose-Sweeney
    • 3
  • Andrew Boilson
    • 3
  • Renata Linertová
    • 4
  • Herbert Roeyers
    • 5
  • Sara Van der Paelt
    • 5
  • Diana Schendel
    • 6
    • 7
    • 8
  • Christine Warberg
    • 8
  • Susanne Cramer
    • 8
  • Antonio Narzisi
    • 9
    • 10
  • Filippo Muratori
    • 9
    • 10
  • María Luisa Scattoni
    • 11
  • Irma Moilanen
    • 12
    • 13
  • Anneli Yliherva
    • 14
  • Evald Saemundsen
    • 15
  • Sigríður Loa Jónsdóttir
    • 15
  • Magdalena Efrim-Budisteanu
    • 16
  • Aurora Arghir
    • 16
  • Sorina Mihaela Papuc
    • 16
  • Astrid Vicente
    • 17
  • Celia Rasga
    • 17
  • Bernadette Rogé
    • 18
  • Quentin Guillon
    • 18
  • Sophie Baduel
    • 18
  • Johanna Xenia Kafka
    • 19
  • Luise Poustka
    • 20
  • Oswald D. Kothgassner
    • 19
  • Rafal Kawa
    • 21
  • Ewa Pisula
    • 21
  • Tracey Sellers
    • 22
  • Manuel Posada de la Paz
    • 23
  1. 1.Centro de Atención Integral al Autismo (INFOAUTISMO), Facultad de Educación, Universidad de Salamanca, Centro de Atención Integral al Autismo (INFOAUTISMO), Facultad de EducaciónUniversidad de SalamancaSalamancaSpain
  2. 2.Research Institute for Developmental MedicineJohannes Kepler UniversityLinzAustria
  3. 3.School of Nursing and Human SciencesDublin City UniversityGlasnevin, DublinIreland
  4. 4.Canary 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)TenerifeSpain
  5. 5.Department of Experimental Clinical and Health PsychologyGhent UniversityGhentBelgium
  6. 6.iPSYCH, The Lundbeck Foundation Initiative for Integrative Psychiatric ResearchAarhusDenmark
  7. 7.Department of Economics and Business, National Centre for Register-Based ResearchAarhus UniversityAarhusDenmark
  8. 8.Department of Public HealthAarhus UniversityAarhusDenmark
  9. 9.Department of Clinical and Experimental MedicineUniversity of PisaPisaItaly
  10. 10.IRCCS Stella Maris FoundationPisaItaly
  11. 11.Research Co-ordination and Support ServiceIstituto Superiore di Sanità Viale Regina Elena 299RomeItaly
  12. 12.University of OuluOuluFinland
  13. 13.Oulu University HospitalOuluFinland
  14. 14.Child Language Research Center, Logopedics, Faculty of HumanitiesUniversity of OuluOuluFinland
  15. 15.State Diagnostic and Counselling CentreKópavogurIceland
  16. 16.Victor Babes - National Institute of PathologyBucharestRomania
  17. 17.Instituto Nacional de Saúde Doutor Ricardo JorgeLisbonPortugal
  18. 18.CERPPS, Université Toulouse Jean-JaurèsToulouseFrance
  19. 19.Department of Child and Adolescent PsychiatryMedical University of ViennaViennaAustria
  20. 20.Department of Child and Adolescent Psychiatry and PsychotherapyUniversity Medical Centre GöttingenGöttingenGermany
  21. 21.Faculty of PsychologyUniversity of WarsawWarsawPoland
  22. 22.National Autistic Society (NAS)LondonUK
  23. 23.Institute of Rare Diseases Research (Instituto de Investigación de Enfermedades Raras/IIER), & Consortium for Biomedical Research in Rare Diseases (Centro de Investigación Biomédica en Red de Enfermedades Raras/CIBERER), Carlos III Institute of Health (Instituto de Salud Carlos III)MadridSpain

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