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Autism in Southeast Europe: A Survey of Caregivers of Children with Autism Spectrum Disorders

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Abstract

The aim of this study was to understand the diagnostic, service and lived experiences of families affected by ASD in Southeast Europe. A total of 758 caregivers from Albania, Bulgaria, Croatia and Turkey were surveyed from 2013 to 2015 about characteristics of the child with ASD; service encounters; and caregiver perceptions. The average age at first concern was 24.4 months (SD 11.8) and at diagnosis, 40.0 months (SD 19.0). Psychiatrists were the most common diagnostician; most children received some ASD-related service, most frequently speech and language therapy. Caregivers endorsed challenges in access to care and perceived stigma. Despite country differences, findings relative to age at first concern, disparities in access and service utilization, and stigma speak to common regional needs.

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Acknowledgments

Thanks to Ayşe Kılınçaslan, Canan Tanıdır, Hilal Adaletli, Sezen Köse, Saliha Kılınç (Turkey) for their efforts in data collection. The authors wish to acknowledge the families who participated in this study, without whom this article would not have been possible.

Funding

This study was funded in part by Autism Speaks (grant number not applicable); minimal financial support was provided by Autism Speaks to some participating countries to facilitate survey translation and data collection.

Author Contributions

AMD conceived of the study, participated in its design and coordination, performed the statistical analysis, and drafted the manuscript; AS concieved of and coordinated the study; AC, SH, KK, and JS participated in the design and coordination of the study, performed the data collection and helped draft and review the manuscript. All authors read and approved the final manuscript.

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Authors and Affiliations

  1. Simons Foundation, 160, 5th Avenue, New York, NY, 10010, USA

    Amy M. Daniels

  2. Department of Psychiatry, University Hospital Center ‘Mother Teresa’, RR Dibres, 370, Tirana, Albania

    Ariel Como

  3. Meram Faculty of Medicine, Department of Child and Adolescent Psychiatry, Necmettin Erbakan University, Konya, Turkey

    Sabri Hergüner

  4. National Center of Public Health and Analyses, Boulevard “Akademik Ivan Evstratiev Geshov”, 15, 1431, Sofia, Bulgaria

    Krasimira Kostadinova

  5. Faculty of Education and Rehabilitation Sciences, University of Zagreb, Borongajska cesta, 83f, 10 000, Zagreb, Croatia

    Jasmina Stosic

  6. Autism Speaks, 1 E, 33rd street, New York, NY, 10016, USA

    Andy Shih

Authors
  1. Amy M. Daniels
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  2. Ariel Como
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  3. Sabri Hergüner
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  4. Krasimira Kostadinova
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  5. Jasmina Stosic
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  6. Andy Shih
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Corresponding author

Correspondence to Amy M. Daniels.

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Conflict of interest

From the start of the study through April 6, 2015, Dr. Daniels was an employee of Autism Speaks. Dr. Como declares that he has no no conflict of interest. Dr. Hergüner declares that he has no conflict of interest. Dr. Kostadinova received minimal financial assistance from Autism Speaks to conduct the study in Bulgaria. Dr. Stosic received minimal financial assistance from Autism Speaks to conduct the study in Croatia. Dr. Shih is an employee of Autism Speaks.

Ethical Approval

All procedures performed in studies involving human participants were 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.

Informed Consent

Informed consent was obtained from all individual participants included in the study.

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Daniels, A.M., Como, A., Hergüner, S. et al. Autism in Southeast Europe: A Survey of Caregivers of Children with Autism Spectrum Disorders. J Autism Dev Disord 47, 2314–2325 (2017). https://doi.org/10.1007/s10803-017-3145-x

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  • DOI: https://doi.org/10.1007/s10803-017-3145-x

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