Skip to main content
Top
Gepubliceerd in: Journal of Autism and Developmental Disorders 8/2017

08-05-2017 | Original Paper

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

Auteurs: Amy M. Daniels, Ariel Como, Sabri Hergüner, Krasimira Kostadinova, Jasmina Stosic, Andy Shih

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 8/2017

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail

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.
Literatuur
go back to reference Benjak, T. (2011). Subjective quality of life for parents of children with autism spectrum disorders in Croatia. Applied Research in Quality of Life, 6(1), 91–102.CrossRef Benjak, T. (2011). Subjective quality of life for parents of children with autism spectrum disorders in Croatia. Applied Research in Quality of Life, 6(1), 91–102.CrossRef
go back to reference Benjak, T., Vuletic Mavrinac, G., & Pavic Simetin, P. (2009). Comparative study on self-perceived health of parents of children with autism spectrum disorders and parents of non-disabled children in Croatia. Croatia Medical Journal, 50, 403–409.CrossRef Benjak, T., Vuletic Mavrinac, G., & Pavic Simetin, P. (2009). Comparative study on self-perceived health of parents of children with autism spectrum disorders and parents of non-disabled children in Croatia. Croatia Medical Journal, 50, 403–409.CrossRef
go back to reference Bilgin, H., & Kucuk, L. (2010). Raising an autistic child: Perspectives from Turkish mothers. Journal of Child and Adolescent Psychiatric Nursing, 23(2), 92–99.CrossRefPubMed Bilgin, H., & Kucuk, L. (2010). Raising an autistic child: Perspectives from Turkish mothers. Journal of Child and Adolescent Psychiatric Nursing, 23(2), 92–99.CrossRefPubMed
go back to reference Brennan, L., Fein, D., Como, A., Rathwell, I. C., & Chen, C. (2016). Use of the modified checklist for autism, revised, with follow-up-Albanian to screen for ASD in Albania. Journal of Autism and Developmental Disorders, 46, 3392–3407.CrossRefPubMed Brennan, L., Fein, D., Como, A., Rathwell, I. C., & Chen, C. (2016). Use of the modified checklist for autism, revised, with follow-up-Albanian to screen for ASD in Albania. Journal of Autism and Developmental Disorders, 46, 3392–3407.CrossRefPubMed
go back to reference Buljevac, M., Majdak, M., & Leutar, Z. (2012). The stigma of disability: Croatian experience. Disability and Rehabilitation, 34(9), 725–732.CrossRefPubMed Buljevac, M., Majdak, M., & Leutar, Z. (2012). The stigma of disability: Croatian experience. Disability and Rehabilitation, 34(9), 725–732.CrossRefPubMed
go back to reference Elsabbagh, M., Divan, G., Koh, Y., Kim, Y. S., Kauchali, S., Marcin, C., et al. (2012). Global prevalence of autism and other pervasive developmental disorders. Autism Research, 5, 160–179.CrossRefPubMedPubMedCentral Elsabbagh, M., Divan, G., Koh, Y., Kim, Y. S., Kauchali, S., Marcin, C., et al. (2012). Global prevalence of autism and other pervasive developmental disorders. Autism Research, 5, 160–179.CrossRefPubMedPubMedCentral
go back to reference Frenette, P., Dodds, L., MacPherson, K., Flowerdew, G., Hennen, B., & Bryson, S. (2013). Factors affecting the age at diagnosis of autism spectrum disorders in Nova Scotia, Canada. Autism: The International Journal of Research and Practice, 17, 184–195.CrossRef Frenette, P., Dodds, L., MacPherson, K., Flowerdew, G., Hennen, B., & Bryson, S. (2013). Factors affecting the age at diagnosis of autism spectrum disorders in Nova Scotia, Canada. Autism: The International Journal of Research and Practice, 17, 184–195.CrossRef
go back to reference Herlihy, L., Knoch, K., Vibert, B., & Fein, D. (2015). Parents’ first concern about toddlers with autism spectrum disorder: Effect of sibling status. Autism: The International Journal of Research and Practice, 19(1), 20–28.CrossRef Herlihy, L., Knoch, K., Vibert, B., & Fein, D. (2015). Parents’ first concern about toddlers with autism spectrum disorder: Effect of sibling status. Autism: The International Journal of Research and Practice, 19(1), 20–28.CrossRef
go back to reference Hoffman, L., Marquis, J., Poston, D., Summers, J. A., & Turnbull, A. (2006). Assessing family outcomes: Psychometric evaluation of the beach center family quality of life scale. Journal of Marriage and Family, 68(4), 1069–1083.CrossRef Hoffman, L., Marquis, J., Poston, D., Summers, J. A., & Turnbull, A. (2006). Assessing family outcomes: Psychometric evaluation of the beach center family quality of life scale. Journal of Marriage and Family, 68(4), 1069–1083.CrossRef
go back to reference Kinnear, S. H., Link, B. G., Ballan, M. S., & Fischbach, R. L. (2016). Understanding the experience of stigma for parents of children with autism spectrum disorder and the role stigma plays in families’ lives. Journal of Autism and Developmental Disorders, 46(3), 942–953.CrossRefPubMed Kinnear, S. H., Link, B. G., Ballan, M. S., & Fischbach, R. L. (2016). Understanding the experience of stigma for parents of children with autism spectrum disorder and the role stigma plays in families’ lives. Journal of Autism and Developmental Disorders, 46(3), 942–953.CrossRefPubMed
go back to reference Levterova, D. (2009). Social services for autistic children. Trakia Journal of Sciences, 8(3), 406–410. Levterova, D. (2009). Social services for autistic children. Trakia Journal of Sciences, 8(3), 406–410.
go back to reference Link, B. G., Cullen, F. T., Struening, E., Shrout, P. E., & Dohrenwend, B. P. (1989). A modified labeling approach to mental disorders: An empirical assessment. American Sociological Review, 54, 400–423.CrossRef Link, B. G., Cullen, F. T., Struening, E., Shrout, P. E., & Dohrenwend, B. P. (1989). A modified labeling approach to mental disorders: An empirical assessment. American Sociological Review, 54, 400–423.CrossRef
go back to reference Lisak, N. (2014). The integrative analysis of social factors in the life course of families with disabilities; The Croatian society context and disability. Sociolno Delo, 53(3), 255–264. Lisak, N. (2014). The integrative analysis of social factors in the life course of families with disabilities; The Croatian society context and disability. Sociolno Delo, 53(3), 255–264.
go back to reference Mak, W.W.S., & Cheung, R.Y.M. (2008). Affiliate stigma among caregivers of people with intellectual disabilities or mental illness. Journal of Applied Research in Intellectual Disabilities, 21(6), 532–545.CrossRef Mak, W.W.S., & Cheung, R.Y.M. (2008). Affiliate stigma among caregivers of people with intellectual disabilities or mental illness. Journal of Applied Research in Intellectual Disabilities, 21(6), 532–545.CrossRef
go back to reference Matheis, M., Matson, J.L., Burns, C.O., Jian, X., Peters, J., et al. (2016). Factors related to parental age of first concern in toddlers with autism spectrum disorder. Developmental Neurorehabilitation, 20(4), 228–235.CrossRefPubMed Matheis, M., Matson, J.L., Burns, C.O., Jian, X., Peters, J., et al. (2016). Factors related to parental age of first concern in toddlers with autism spectrum disorder. Developmental Neurorehabilitation, 20(4), 228–235.CrossRefPubMed
go back to reference McConachie, H., Fletcher-Watson, S., Working Group 4, COST Action ‘Enhancing Scientific Study of Early Autism’. (2015). Building capacity for rigorous controlled trials in autism: The importance of measuring treatment adherence. Child: Care, Health and Development, 41(2), 169–177. McConachie, H., Fletcher-Watson, S., Working Group 4, COST Action ‘Enhancing Scientific Study of Early Autism’. (2015). Building capacity for rigorous controlled trials in autism: The importance of measuring treatment adherence. Child: Care, Health and Development, 41(2), 169–177.
go back to reference Milic Babic, M. (2012). Neke odrednice roditeljskog stresa u obiteljima djece s teskocama u razvoju. Hrvatska Revija za Rehabiliticijska Istrazivanja, 48(2), 66–75. Milic Babic, M. (2012). Neke odrednice roditeljskog stresa u obiteljima djece s teskocama u razvoju. Hrvatska Revija za Rehabiliticijska Istrazivanja, 48(2), 66–75.
go back to reference Morris, J., Belfer, M., Daniels, A., Flisher, A., Ville, L., Lora, A., & Saxena, S. (2011). Treated prevalence of and mental health services received by child and adolescents in 42 low- and middle-income countries. Journal of Child Psychology and Psychiatry, 52(12), 1239–1246.CrossRefPubMed Morris, J., Belfer, M., Daniels, A., Flisher, A., Ville, L., Lora, A., & Saxena, S. (2011). Treated prevalence of and mental health services received by child and adolescents in 42 low- and middle-income countries. Journal of Child Psychology and Psychiatry, 52(12), 1239–1246.CrossRefPubMed
go back to reference Preece, D., Symeou, L., Stosic, J., Troshanska, J., Mavrou, K., Theodororu, E., Frey Škrinjar, J. (2016). Accessing parental perspectives to inform the development of parent training in autism in south-eastern Europe. European Journal of Special Needs Education, 32(2), 252−269.CrossRef Preece, D., Symeou, L., Stosic, J., Troshanska, J., Mavrou, K., Theodororu, E., Frey Škrinjar, J. (2016). Accessing parental perspectives to inform the development of parent training in autism in south-eastern Europe. European Journal of Special Needs Education, 32(2), 252−269.CrossRef
go back to reference Salomone, E., Beranova, S., Bonnet-Brilhault, F., Lauritsen, M. B., Budisteanu, M., Buitelaar, J., et al. (2015b). Use of early intervention for you children with autism spectrum disorder across Europe. Autism: The International Journal of Research and Practice, 20(2), 233–249.CrossRef Salomone, E., Beranova, S., Bonnet-Brilhault, F., Lauritsen, M. B., Budisteanu, M., Buitelaar, J., et al. (2015b). Use of early intervention for you children with autism spectrum disorder across Europe. Autism: The International Journal of Research and Practice, 20(2), 233–249.CrossRef
go back to reference Salomone, E., Charman, T., McConachie, H., Warreyn, P. (2015a). 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. Salomone, E., Charman, T., McConachie, H., Warreyn, P. (2015a). 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.
go back to reference Salomone, E., Charman, T., McConachie, H., Warreyn, P., Working Group 4, COST Action ‘Enhancing the Scientific Study of Early Autism’. (2015c). Prevalence and correlates of use of complementary and alternative medicine in children with autism spectrum disorders in Europe. European Journal of Pediatrics, 174(10), 1277–1285.CrossRefPubMed Salomone, E., Charman, T., McConachie, H., Warreyn, P., Working Group 4, COST Action ‘Enhancing the Scientific Study of Early Autism’. (2015c). Prevalence and correlates of use of complementary and alternative medicine in children with autism spectrum disorders in Europe. European Journal of Pediatrics, 174(10), 1277–1285.CrossRefPubMed
go back to reference Sekušak-Galešev, S., Frey Škrinjar, J., & Masnjak, L. (2015). Examining social inclusion and quality of support in preschool, elementary and secondary educational institutions for children and students with autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD). Zagreb: Faculty of Education and Rehabilitation Sciences University of Zagreb. Sekušak-Galešev, S., Frey Škrinjar, J., & Masnjak, L. (2015). Examining social inclusion and quality of support in preschool, elementary and secondary educational institutions for children and students with autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD). Zagreb: Faculty of Education and Rehabilitation Sciences University of Zagreb.
go back to reference Shattuck, P. T., Durkin, M., Maenner, M., Newschaffer, C., Mandell, D. S., Wiggins, L., et al. (2009). Timing of identification among children with an autism spectrum disorder: Findings from a population-based surveillance study. Journal of the American Academy of Child and Adolescent Psychiatry, 48, 474–483.CrossRefPubMedPubMedCentral Shattuck, P. T., Durkin, M., Maenner, M., Newschaffer, C., Mandell, D. S., Wiggins, L., et al. (2009). Timing of identification among children with an autism spectrum disorder: Findings from a population-based surveillance study. Journal of the American Academy of Child and Adolescent Psychiatry, 48, 474–483.CrossRefPubMedPubMedCentral
go back to reference Sirin, N., & Tekin-Iftar, E. (2016). Opinions of Turkish parents and teachers about safety skills instruction to children with autism spectrum disorders: A preliminary investigation. Journal of Autism and Developmental Disorders, 46(8), 2653–2665.CrossRefPubMed Sirin, N., & Tekin-Iftar, E. (2016). Opinions of Turkish parents and teachers about safety skills instruction to children with autism spectrum disorders: A preliminary investigation. Journal of Autism and Developmental Disorders, 46(8), 2653–2665.CrossRefPubMed
go back to reference Tekinarslan, I. C. (2013). A comparison study of depression and quality of life in Turkish mothers of children with down syndrome, cerebral palsy, and autism spectrum disorder. Psychological Reports, 112(1), 266–287.CrossRefPubMed Tekinarslan, I. C. (2013). A comparison study of depression and quality of life in Turkish mothers of children with down syndrome, cerebral palsy, and autism spectrum disorder. Psychological Reports, 112(1), 266–287.CrossRefPubMed
go back to reference Valicenti-McDermott, M., Hottinger, K., Seijo, R., & Shulman, L. (2012). Age at diagnosis of autism spectrum disorders. The Journal of Pediatrics, 161(3), 554–556.CrossRefPubMed Valicenti-McDermott, M., Hottinger, K., Seijo, R., & Shulman, L. (2012). Age at diagnosis of autism spectrum disorders. The Journal of Pediatrics, 161(3), 554–556.CrossRefPubMed
go back to reference Vulchanova, M., Djalev, L., Stankova, M., Vulchanov, V., Allison, C., & Baron-Cohen, S. (2016). Factor structure of the Bulgarian CAST: (Childhood Autism Spectrum Test). Journal of Intellectual Disability-Diagnosis and Treatment, 4, 117–128.CrossRef Vulchanova, M., Djalev, L., Stankova, M., Vulchanov, V., Allison, C., & Baron-Cohen, S. (2016). Factor structure of the Bulgarian CAST: (Childhood Autism Spectrum Test). Journal of Intellectual Disability-Diagnosis and Treatment, 4, 117–128.CrossRef
go back to reference Wallace, S., Fein, D., Rosanoff, M., Dawson, G., Hossain, S., Brennan, L., et al. (2012). A global public health strategy for autism spectrum disorders. Autism Research, 5, 211–217.CrossRefPubMed Wallace, S., Fein, D., Rosanoff, M., Dawson, G., Hossain, S., Brennan, L., et al. (2012). A global public health strategy for autism spectrum disorders. Autism Research, 5, 211–217.CrossRefPubMed
Metagegevens
Titel
Autism in Southeast Europe: A Survey of Caregivers of Children with Autism Spectrum Disorders
Auteurs
Amy M. Daniels
Ariel Como
Sabri Hergüner
Krasimira Kostadinova
Jasmina Stosic
Andy Shih
Publicatiedatum
08-05-2017
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders / Uitgave 8/2017
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-017-3145-x

Andere artikelen Uitgave 8/2017

Journal of Autism and Developmental Disorders 8/2017 Naar de uitgave

Original Paper

Kafka and Autism