Top

Journal of Autism and Developmental Disorders

Gepubliceerd in:

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

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.

vorige artikel Dose-Response Effects of Long-Acting Liquid Methylphenidate in Children with Attention Deficit/Hyperactivity Disorder (ADHD) and Autism Spectrum Disorder (ASD): A Pilot Study

volgende artikel The Physiological and Psychological Effects of Ostracism in Adults with ASD

Autism Speaks. (2016). Autism Speaks Global Public Health Initiative website. Accessed June 11, 2016 from https://www.autismspeaks.org/science/research-initiatives/global-autism-public-health..

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., 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

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

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

Buljevac, M., Majdak, M., & Leutar, Z. (2012). The stigma of disability: Croatian experience. Disability and Rehabilitation, 34(9), 725–732.CrossRefPubMed

Centers for Disease Control and Prevention. National Survey of Children with Special Health Care Needs website. November 10, 2014. Accessed June 11, 2016 from http://www.cdc.gov/nchs/slaits/cshcn.htm

Centers for Disease Control and Prevention. Services to Pathways to Diagnosis and Services website. July 9, 2015. Accessed June 11, 2016 from http://www.cdc.gov/nchs/slaits/spds.htm

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

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

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

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

IAN Community website. Child with ASD Questionnaire. https://iancommunity.org/cs/ian_research_questions/child_with_asd_questionnaire August 24, 2009. Accessed June 11, 2016.

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

Levterova, D. (2009). Social services for autistic children. Trakia Journal of Sciences, 8(3), 406–410.

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

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.

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

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

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.

Milic Babic, M. (2012). Neke odrednice roditeljskog stresa u obiteljima djece s teskocama u razvoju. Hrvatska Revija za Rehabiliticijska Istrazivanja, 48(2), 66–75.

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

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

Republic of Bulgaria National Statistical Institute. (2016). Students in Special Schools by Type [data file]. Retrieved from http://www.nsi.bg/en/content/4815/students-special-schools-type.

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., 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., 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

Save the Children. (2014). Albania Country Spotlight. Retrieved from: https://campaigns.savethechildren.net/sites/campaigns.savethechildren.net/files/Albania_Proof_Fonal.pdf.

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.

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

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

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

UNICEF. (2014). Situational Analysis of Children with Disabilities in Albania. Retrieved from: https://www.unicef.org/albania/2014-Situational_Analysis_of_CwD.pdf.

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

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

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

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

Bohn Stafleu van Loghum

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Log in om toegang te krijgen

Andere artikelen Uitgave 8/2017

“Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions

Brief Report: Is Impaired Classification of Subtle Facial Expressions in Children with Autism Spectrum Disorders Related to Atypical Emotion Category Boundaries?

Multisensory Integration of Low-level Information in Autism Spectrum Disorder: Measuring Susceptibility to the Flash-Beep Illusion

Brief Report: Autism in the Courtroom: Experiences of Legal Professionals and the Autism Community

Can Youth with Autism Spectrum Disorder Use Virtual Reality Driving Simulation Training to Evaluate and Improve Driving Performance? An Exploratory Study

Dose-Response Effects of Long-Acting Liquid Methylphenidate in Children with Attention Deficit/Hyperactivity Disorder (ADHD) and Autism Spectrum Disorder (ASD): A Pilot Study