Otizmli çocuğa sahip olan ebeveynlerin görüşleri: otizm tanımlamaları ve otizmin nedenleri

Year 2014, Volume: 15 Issue: 01, 1 - 17, 01.02.2014

Gökhan Töret Selda Özdemir Ömür Gürel Selimoğlu Ufuk Özkubat

https://doi.org/10.1501/Ozlegt_0000000189

Abstract

Keywords

-

Otizmli Çocuğa Sahip Olan Ebeveynlerin Görüşleri: Otizm Tanımlamaları ve Otizmin Nedenleri

Abstract

Bu araştırmada, otizmli çocuğa sahip olan ebeveynlerin, otizmin nedenlerine ilişkin algıları, otizm tanımlamaları ve çocuklarının otizmin yaygın tanımı ile uyumlu olduğunu veya olmadığını düşündükleri özelliklerine ilişkin görüşlerinin belirlenmesi amaçlanmıştır. Araştırmada, otizmli çocuğa sahip olan birincil bakım veren durumundaki 50 ebeveyn ile yarı-yapılandırılmış görüşmeler gerçekleştirilmiştir. Ebeveyn görüşlerinin yazıya dökülmesi ile ebeveyn görüşlerini yansıtan ön temaların oluşturulması sonrası temalar üzerinden yapılan betimsel analiz sonucunda, otizm ile ilişkili olarak ebeveynlerin çoğunluğunun çocuklarının sahip olduğu otizmin nedeni konusunda bilinmezlik yaşadıkları, otizmi, sosyal-iletişimsel davranışlarda bozukluk olarak tanımladıkları, otizmin tanımı ile uyumlu olduğunu düşündükleri en sık problemin, çocuklarında gözledikleri dil-konuşma ve iletişim bozukluğu olduğu ve çocuklarında otizmin tanımı ile uyumlu olmayan bir öğrenme veya davranış özelliği gözlemedikleri belirlenmiştir. Bu araştırmada ilgili temalar altında derinlemesine elde edilen ebeveyn görüşleri, ilgili nitel araştırmalar doğrultusunda tartışılmış ve gelecekte yapılacak araştırmalara ve uygulamalara yönelik önerilere yer verilmiştir

Keywords

Otizm, otizmin nedenleri, ebeveyn görüşleri

References

• Alqahtani, M. M. J. (2012). Understanding autism in Saudi Arabia: A qualitative analysis of the community and cultural context. Journal of Pediatric Neurology, 10, 15-22.
• Amerikan Psikiyatri Birliği (2007). DSM-IV-TR Tanı ölçütleri başvuru kitabı. Çeviren: Ertuğrul Köroğlu.Ankara: HYB Yayıncılık
• Bolton, P. F,, Golding, J,, Emond, A., & Steer, C.D. (2012). Autism spectrum disorder and autistic traits in the Avon Longitudinal Study of Parents and Children: precursors and early signs. Journal of American Academy of Child and Adolescent Psychiatry, 51, 249-260.
• Chawarska, K., Paul, R., Klin, A., Hannigen, S., Dichtel, L.E., & Volkmar, F. (2007). Parental recognition of developmental problems in toddlers with autism spectrum disorders. Journal of Autism and Developmental Disorders, 37, 62-72.
• Clopper, C. G., Rohrbeck, K. L., & Wagner, L. (2013). Perception of talker age by young adults with high- functioning autism. Journal of Autism and Developmental Disorders, 43, 134-146.
• Çarkoğlu, A., & Kalaycıoğlu, E. (2009). The Rising tide of conservatism in Turkey. Palgrave Macmillan, NY, US.
• Dale, E., Jahoda, A., & Knott, F. (2006). Mothers’ attributions following their child’s diagnosis of autistic spectrum disorder: Exploring links with maternal levels of stress, depression, and expectations about their child’s future. Autism, 10, 463–479.
• Davidovitch, M., Glick, L; Holtzman, G.; Tirosh, E., & Safir, M.(2000). Developmental Regression in Autism: Maternal Perception. Journal of Autism and Developmental Disorders, 30, 113-119.
• Diken, I. H., Ardıç, A., Diken, Ö., & Gilliam, E.J. (2012). Exploring the Validity and Reliability of Turkish Version of Gilliam Autism Rating Scale-2: Turkish Standardization Study. Eğitim ve Bilim, 37, 318-328.
• Dyches, T., Wilder, L., Sudweeks, R., Obiakor, F., & Algozzine, B. (2004). Multicultural issues in autism. Journal of Autism and Developmental Disorders, 34, 211-222.
• Glazzard, J., & Overall, K. (2012). Living with autistic spectrum disorder: parental experiences of raising a child with ASD. Support for Learning: British Journal of Learning Support, 27, 37-45.
• Goin-Kochel, R. P., & Myers, B.J. (2005). Congenital versus regressive onset of autism spectrum disorders: Parents’ beliefs about causes. Focus on Autism and Other Developmental Disabilities, 20, 169–179.
• Goldberg, W. A., Thorsen, K. L., Osann, K., & Spence, M.A. (2008). Use of home videotapes to confirm parental reports of regression in autism. Journal of Autism and Developmental Disorders, 38, 1136-1146.
• Gray, D. E. (1995). Lay conceptions of autism: Parents' explanatory models. Medical Anthropology, 16, 99-118.
• Gray, D. E. (2002). Ten years on: a longitudinal study of families of children with autism. Journal of Intellectual and Developmental Disability, 27, 215-222.
• Harrington, J. W., Patrick, P. A., Edwards, K. S., & Brand, D. A. (2006). Parental beliefs about autism: Implications for the treating physician. Autism, 10, 452–462.
• Hebert, E. B., & Koulouglioti, C. (2010). Parental beliefs about cause and course of their child’s autism and outcomes of their beliefs. Issues in Comprehensive Pediatric Nursing, 33, 149-163.
• Hoppe, S. E.(2005). Parent Perceptions: Communication, Interaction, and Behavior in Autism. Teaching Exceptional Children Plus, 1, 14-25.
• Jegatheesan, B. (2011). Multilingual Development in Children with Autism: Perspectives of South Asian Muslim Immigrant Parents on Raising a Child with a Communicative Disorder in Multilingual Contexts. Bilingual Research Journal, 34, 185-200.
• Jegatheesan, B., Miller, P. J., & Fowler, S. A. (2010). Autism From a Religious Perspective: A Study of Parental Beliefs in South Asian Muslim Immigrant Families. Focus on Autism and Other Developmental Disabilities, 25, 98-109.
• Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217–250
• Langan, M. (2011). Parental voices and controversies in autism. Disability & Society, 26, 193-205.
• Levy, S. E., & Hyman, S. L. (2003). Use of complementary and alternative treatments for children with autistic spectrum disorders is increasing. Pediatric Annals, 32, 685–691.
• Lord, C., Risi, S., Lambrecht, L., Cook, E. H., Leventhal, B. L., DiLavore, P., Pickles, A., & Rutter, M. (2000). The autism diagnostic observation schedule––Generic: A standard measure of social and communication deficits associated with the spectrum of autism. Journal of Autism & Developmental Disorders, 30,205– 223.
• Lord, C., Rutter, M., & Le Couteur, A. (1994). The autism diagnostic interview–Revised: A revised version of a diagnostic interview for caregivers of individuals with possible pervasive developmental disorders. Journal of Autism & Developmental Disorders, 24, 659–685.
• Ludlow, A., Skelly, C., & Rohleder, P. (2011). Challenges faced by parents of children diagnosed with autism spectrum disorder. Journal of Health Psychology, 1-10.
• Mandell, D. & Novak, M. (2005). The role of culture in families’ treatment decisions for children with autism spectrum disorders. Mental Retardation and Developmental Disabilities Research Reviews, 11, 110-115.
• Meral, B. F., & Cavkaytar, A. (2012). A Study on Social Support Perception of Parents who Have Children with Autism. 3, 124-135.
• Mercer, L., Creighton, S., Holden, J. J. A., & Lewis, M. E. S. (2006). Parental perspectives on the causes of an autism spectrum disorder in their children. Journal of Genetic Counseling, 15, 41–50.
• Mickelson, K. D., Wroble, M., & Helgeson, V. S. (1999). “Why my child?”: Parental attributions for children’s special needs. Journal of Applied Social Psychology, 29, 1263–1292.
• Mundy, P., & Mastergeorge, A. (2011). The effects of autism on social learning and social attention, Chapter 1, In Mundy, P. & Mastergeorge, A. (Eds). Autism for Educators: Vol. 1, Translating Research to Schools and Classrooms (pp 3-34). San Francisco, CA: Jossey Bass.
• Nealy, C. E., O’Hare, L., Powers, J. D., & Swick, D. C. (2012). The impact of autism spectrum disorders on the family: a qualitative study of mothers’ perspectives. Journal of Family Social Work, 15, 187–201.
• Ozonoff, S., Williams, B., & Landa, R. (2005) Parental report of the early development of children with regressive autism. Autism, 9, 461-486.
• Özen, A., Çolak, A., & Acar, Ç. (2002). Zihin özürlü çocuğa sahip annelerin günlük yaşamda karşılaştıkları problem davranışlarla ilgili görüşleri. Özel Eğitim Dergisi, 3, 1-13.
• Özdemir, S., Gürel, Ö., Töret, G., & Özkubat, U. (2012). 2-12 Yaş Aralığında Bulunan Otizmli Çocuğa Sahip Ebeveynlerin Tanı Öncesi, Tanı Sırası ve Tanı Sonrasına İlişkin Görüşleri. 22. Ulusal Özel Eğitim Kongresi, Trabzon.
• Özsan, H. H. (2004). Ebeveynlerin Otistik Bozukluk Bulgularına Duyarlılığı ve Farkındalığı, Otizmde Erken Tanı ve Erken Müdahalenin Önemi. Yayınlanmamış Yüksek Lisans Tezi, İstanbul Üniversitesi Cerrahpaşa Tıp Fakültesi Çocuk Ruh Sağlığı ve Hastalıkları Ana Bilim Dalı, İstanbul.
• Patterson, S., Smith, V., & Jelen, M. (2009). Intervention practices for repetitive and stereotypic behaviour in individuals with autism spectrum disorder: A systematic review. Biennial Meeting of Society for Research in Child Development, Denver, Colorado, USA.
• Romski, M., Sevcik, R. A., Adamson, L. B., Smith, A., Cheslock, M., & Bakeman, R. (2011). Parent perceptions of the language development of toddlers with developmental delays before and after participation in parent- coached langauge interventions. American Journal of Speech Language Pathology, 20, 111-118.
• Selkirk, C. G., Veach, M. P., Lian, F., Schimmenti, L., & LeRoy, B. S. (2009). Parents’ perceptions of autism spectrum disorder etiology and recurrence risk and effects of their perceptions on family planning: Recommendations for genetic counselors. Journal of Genetic Counseling, 18, 507–519.
• Shaked, M., & Yoram, B. (2006). Grappling with affliction: autism in the Jewish Ultra Orthodox community in Israel. Culture, Medicine and Psychiatry, 30, 1-27.
• Skinner, D., Correa, V., Skinner, M., & Bailey, D. (2001). Role of religion in the lives of Latino families of young children with developmental delays. American Journal of Mental Retardation, 106, 297-313.
• Spiker, D., Boyce, G. C., & Boyce, L. K. (2002). Parent‐child interactions when young children have disabilities. International Review of Research in Mental Retardation, 25, 35‐70.
• Thomas, M. (2012). Examining Parental Beliefs on the Etiology of Autism Spectrum Disoreders and its Influence on Obtaining Genetic Evalutaion. Sarah Lawrence College, ProQuest Dissertations and Theses.
• Wimpory, D. C., Hobson, R. P., Williams, J. M. G., & Nash, S. (2000). Are infants with autism socially engaged? A study of recent retrospective parental reports. Journal of Autism and Developmental Disorders, 30, 525-536.