Otizm Spektrum Bozukluğu Olan Çocuklarda İhmal ve İstismar: Ebeveynlerin Görüş ve Deneyimleri

Yıl 2025, Cilt: 58 Sayı: 1, 381 - 435, 15.04.2025

Gözde Şakar , Özlem Haskan Avcı

Öz

Bu çalışma, otizm spektrum bozukluğu tanısı almış çocukların ebeveynlerinin çocuk istismarı ve ihmaline ilişkin yaşantılarını derinlemesine incelemeyi amaçlayan nitel desende bir çalışmadır. Çalışma kapsamında katılımcıların ebeveynlik deneyimlerinde karşılaştıkları çocuk istismarı ve ihmaline yönelik risk faktörleri ve koruyucu faktörler belirlenmeye çalışılmış ve bu konudaki ihtiyaçları anlaşılmaya çalışılmıştır. Araştırma, fenomenolojik yaklaşıma dayalı olarak gerçekleştirilmiştir. Araştırma kapsamında 9 ebeveyn ile 2024 Haziran-Ekim ayları arasında bireysel görüşmeler yapılmıştır. Katılımcıların yaşları 28 ile 46 arasında değişmekte olup, 8'i (%89) kadın, 1'i (%11) ise erkektir. Çocukların yaşları ise 3-12 aralığında değişiklik göstermekte ve çoğunluğunda (%67) otizm dışında ek bir tanı bulunmamaktadır. Ebeveynlerden toplanan veriler tematik analizle incelenerek 5 temaya ve 18 alt temaya ulaşılmıştır. Araştırmada ortaya çıkan temalar şu şekildedir: 1. Çocuğun istismar ve ihmal açısından risk grubunda yer alması, 2. Sistemsel eksiklikler, 3. Risk faktörü olarak ebeveynin yaşadığı zorlanmalar, 4. İstismar ve ihmale karşı alınan önlemler, 5. Destekleyici faktörler. Çalışmanın bulguları, ilgili literatür ışığında tartışılarak açıklanmaya çalışılmıştır. Bulgular doğrultusunda, otizm spektrum bozukluğu (OSB) tanısı olan çocuklara yönelik devlet eğitim desteğinin arttırılması, özel eğitim kurumlarının denetlenmesi, OSB’nin daha fazla tanıtılması ve ebeveynlere yasal haklar ve yönetmelikler konusunda aile eğitimleri yoluyla bilgi verilmesi önerilmektedir.

Anahtar Kelimeler

Çocuk istismarı ve ihmali, otizm, otizm spektrum bozukluğu, ebeveynlik, aile

Neglect and Abuse in Children with Autism Spectrum Disorder: Parents' Perspectives and Experiences

Öz

This qualitative study aims to investigate in depth the experiences of parents of children diagnosed with autism spectrum disorder concerning child abuse and neglect. As part of the study, risk and protective factors associated with child abuse and neglect within participants' parenting experiences were identified, and their needs in this area were addressed. The research followed a phenomenological approach, and individual interviews were conducted with 9 parents between June and October 2024. Participants' ages ranged from 28 to 46, with eight being female and one male. The children’s ages ranged from 3 to 12, with the majority (67%) presenting no additional diagnoses beyond autism. Data collected from the parents were thematically analyzed, resulting in five main themes and 18 sub-themes. The themes emerging from the research are as follows: 1. The child’s risk status in terms of abuse and neglect, 2. Systemic deficiencies, 3. Parental challenges as a risk factor, 4. Preventive measures against abuse and neglect, and 5. Supportive factors. The findings were discussed and interpreted in relation to the existing literature. Based on the findings, recommendations include increasing state support for children diagnosed with autism spectrum disorder (ASD), monitoring special education institutions, enhancing ASD awareness, and providing family training sessions to inform parents about their legal rights and relevant regulations.

Anahtar Kelimeler

Child abuse and neglect, autism spectrum disorder, autism, parenting, family

Kaynakça

• Aktu, Y. (2021). Bilişsel davranışçı terapi odaklı psikoeğitim uygulamasının ebeveynlerin çocuk istismarı farkındalıklarına etkisinin karma yöntemle incelenmesi belirlenmesi (Tez No. 685530) [Doktora tezi, Atatürk Üniversitesi]. Yükseköğretim Kurulu Ulusal Tez Merkezi. [https://tez.yok.gov.tr/UlusalTezMerkezi/tezSorguSonucYeni.jsp]
• American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders (5th ed.). American Psychiatric Association.
• Baio, J., Wiggins, L., Christensen, D. L., et al. (2018). Prevalence of autism spectrum disorder among children aged 8 years—Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2014. MMWR Surveillance Summaries, 67(SS-6), 1–23. https://doi.org/10.15585/mmwr.ss6706a1
• Bayraklı, H., & Sucuoğlu, B. (2017). Okul öncesinde kaynaştırma: Aile eğitimi (3. baskı). Pegem Atıf İndeksi.
• Bentley, H., Fellowes, A., Glenister, S., Mussen, N., Ruschen, H., Slater, B., Turnbull, M., Vine, T., Wilson, P., & Witcombe Hayes, S. (2020). How safe are our children? An overview of data on adolescent abuse. NSPCC.
• Berg, K. L., Shiu, C. S., Acharya, K., Stolbach, B. C., & Msall, M. E. (2016). Disparities in adversity among children with autism spectrum disorder: A population-based study. Developmental Medicine & Child Neurology, 58(11), 1124–1131. https://doi.org/10.1111/dmcn.13161
• Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
• Brenner, J., Pan, Z., Mazefsky, C., Smith, K. A., & Gabriels, R. (2017). Behavioral symptoms of reported abuse in children and adolescents with autism spectrum disorder in inpatient settings. Journal of Autism and Developmental Disorders, 48(11), 3727–3735. https://doi.org/10.1007/s10803-017-3183-4
• Breslau, N. (1982). Siblings of disabled children: Birth order and age-spacing effects. Journal of Abnormal Child Psychology, 10(1), 85–95. https://doi.org/10.1007/BF00912633
• Büyüköztürk, Ş., Çakmak, E. K., Akgün, Ö. E., Karadeniz, Ş. ve Demirel, F. (2016). Bilimsel araştırma yöntemleri (20. baskı). Pegem Akademi.
• Bywaters, P., Scourfield, J., Jones, C., Sparks, T., Elliott, M., Hooper, J., McCartan, C., Shapira, M., Bunting, L., & Daniel, B. (2020). Child welfare inequalities in the four nations of the UK. Journal of Social Work, 20(2), 193–215. https://doi.org/10.1177/1468017318793479
• Carlson, J. S., Yohannan, J., Darr, C. L., Turley, M. R., Larez, N. A., & Perfect, M. M. (2020). Prevalence of adverse childhood experiences in school-aged youth: A systematic review (1990–2015). International Journal of School & Educational Psychology, 8(1), 2–23. https://doi.org/10.1080/21683603.2018.1548397
• Creswell, J. W., & Creswell, J. D. (2018). Research design: Qualitative, quantitative, and mixed methods approaches (5th ed.). SAGE Publications.
• Currie, J., & Tekin, E. (2012). Understanding the cycle: Childhood maltreatment and future crime. Journal of Human Resources, 47(2), 509-549. https://doi.org/10.3368/jhr.47.2.509
• Çakıcı, A. (2020). Otizm spektrum bozukluğu olan çocukların kaynaştırma/bütünleştirme yoluyla eğitim sorunlarına genel bir bakış [An overview of educational challenges of children with autism spectrum disorder through inclusion/integration]. Boğaziçi Üniversitesi Eğitim Dergisi, 37(2), 81- 105.
• Çopuroğlu, Y., & Mengi, A. (2014). Toplumsal dışlanma ve otizm [Social exclusion and autism]. Turkish Studies, 9(5), 607-626. http://dx.doi.org/10.7827/TurkishStudies.6993
• Dalkılıç, M., & Güloğlu, B. (2016). Marriage satisfaction of couples having autistic children: An examination of marriage satisfaction, anxiety, relational resilience, and attitudes toward seeking psychological help. Istanbul Aydın University Journal of the Faculty of Education, 2(2), 29-54.
• Deniz, İ., & Göller, L. (2017). The relationship between family functioning and the satisfaction in marriage of the parents who have handicapped children. Journal of Education, Theory and Practical Research, 3(1), 53-69.
• Doğru, S. S. Y., & Arslan, E. (2008). Engelli çocuğu olan annelerin sürekli kaygı düzeyi ile durumluk kaygı düzeylerinin karşılaştırılması [Comparison of trait anxiety level and state anxiety level of mothers with disabled children]. Selçuk Üniversitesi Sosyal Bilimler Enstitüsü Dergisi, 19, 543-553.
• Ekiz, D. (2013). Bilimsel araştırma yöntemleri: Yaklaşım, yöntem ve teknikler (3. baskı). Anı Yayıncılık.
• Er-Sabuncuoğlu, D. M. (2016). Autism knowledge; Preschool educators. Hacettepe University Faculty of Health Sciences Journal, 3(1), 28-52. https://doi.org/10.21020/husbfd.259140
• Felitti, V. J., Anda, R. F., Nordenberg, D., Williamson, D. F., Spitz, A. M., Edwards, V., & Marks, J. S. (1998). Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults: The adverse childhood experiences (ACE) study. American Journal of Preventive Medicine, 14(4), 245–258. https://doi.org/10.1016/s0749-3797(98)00017-8
• Fisher, M. H., Epstein, R. A., Urbano, R. C., Vehorn, A., Cull, M. J., & Warren, Z. (2019). A population-based examination of maltreatment referrals and substantiation for children with autism spectrum disorder. Autism, 23(5), 1335- 1340. https://doi: 10.1177/1362361318813998
• Gardner, M. J., Thomas, H. J., & Erskine, H. E. (2019). The association between five forms of child maltreatment and depressive and anxiety disorders: A systematic review and meta-analysis. Child Abuse & Neglect, 96, 104082. https://doi.org/10.1016/j.chiabu.2019.104082
• Garrad, T.-A., Rayner, C., & Pedersen, S. (2019). Attitudes of Australian primary school teachers towards the inclusion of students with autism spectrum disorders. Journal of Research in Special Educational Needs, 19, 58-67. https://doi.org/10.1111/1471-3802.12424
• Gerstein, E. D., Crnic, K. A., Blacher, J., & Baker, B. L. (2009). Resilience and the course of daily parenting stress in families of young children with intellectual disabilities. Journal of Intellectual Disability Research, 53, 981–997. https://doi.org/10.1111/j.1365-2788.2009.01217.x
• Gönen, A., Yıkmış, A., & Diken, İ. (2014). The relationship between autism spectrum disorder and the depression levels of the parents of individuals with autism spectrum disorder. PESA International Journal of Social Studies, 6(3), 232-243.
• Guest, G., Bunce, A., & Johnson, L. (2006). How many interviews are enough? An experiment with data saturation and variability. Field Methods, 18(1), 59–82. https://doi.org/10.1177/1525822X05279903
• Güler, A., Halıcıoğlu, M. B., & Taşgın, S. (2015). Sosyal bilimlerde nitel araştırma yöntemleri: Teorik çerçeve, pratik öneriler, 7 farklı nitel araştırma yaklaşımı, kalite ve etik hususlar (2. baskı). Seçkin Yayıncılık.
• Güller, B., & Yaylacı, F. (2022). Quality of life, anxiety, depression levels and related factors in parents of children with autism spectrum disorder. Journal of Uludag University Medical Faculty, 48(2), 217-224.
• Hacıibrahimoğlu, B., & Ustaoğlu, A. (2019). Okul öncesi öğretmen adaylarının otizm spektrum bozukluğu olan çocuklara ilişkin bilgi ve tutumlarının incelenmesi [An investigation of preservice preschool teachers' knowledge and attitudes toward children with autism spectrum disorders]. İnönü Üniversitesi Eğitim Fakültesi Dergisi, 20(2), 491-506. https://doi.org/10.17679/inuefd.441184
• Hamilton‐Giachritsis, C., & Pellai, A. (2017). Child abuse and neglect: Ecological perspectives. The Wiley Handbook of What Works in Child Maltreatment: An Evidence‐Based Approach to Assessment and Intervention in Child Protection, 29-47.
• Hartley, S. L., Barker, E. T., Seltzer, M. M., Floyd, F., Greenberg, J., Orsmond, G., & Bolt, D. (2010). The relative risk and timing of divorce in families of children with an autism spectrum disorder. Journal of Family Psychology, 24(4), 449- 457. https://doi.org/10.1037/a0019847
• Hartley, G., Sirois, F., Purrington, J., & Rabey, Y. (2024). Adverse childhood experiences and autism: A meta-analysis. Trauma, Violence, & Abuse, 25(3), 2297-2315. https://doi.org/10.1177/15248380231213314
• Hellström, L. (2019). A systematic review of polyvictimization among children with attention deficit hyperactivity or autism spectrum disorder. International Journal of Environmental Research and Public Health, 16(13), 2280. https://doi.org/10.3390/ijerph16132280
• Helton, J. J., & Bruhn, C. M. (2013). Prevalence of disabilities and abilities in children investigated for abuse and neglect. Journal of Public Child Welfare, 7(5), 480– 495. https://doi.org/10.1080/15548732.2013.843497
• Helton, J. J., Gochez-Kerr, T., & Gruber, E. (2018). Sexual abuse of children with learning disabilities. Child Maltreatment, 23(2), 157-165. https://doi.org/10.1177/1077559517733814
• Hibbard, R. A., & Desch, L. W. (2007). Maltreatment of children with disabilities. Pediatrics, 119(5), 1018–1025. https://doi.org/10.1542/peds.2007-0565.
• Hoover, D., & Kaufman, J. (2018). Adverse childhood experiences in children with autism spectrum disorder. Current Opinions in Psychiatry, 31(2), 128–132. https://doi.org/10.1097/YCO.0000000000000390
• Hughes, K., Bellis, M. A., Hardcastle, K. A., Sethi, D., Butchart, A., Mikton, C., Jones, L., & Dunne, M. P. (2017). The effect of multiple adverse childhood experiences on health: A systematic review and meta-analysis. The Lancet Public Health, 2(8), e356–e366. https://doi.org/10.1016/S2468-2667(17)30118- 4
• Kerns, C. M., Newschaffer, C. J., & Berkowitz, S. J. (2015). Traumatic childhood events and autism spectrum disorder. Journal of Autism and Developmental Disorders, 45(11), 3475–3486. https://doi.org/10.1007/s10803-015-2392-y
• Keser, F., & Cavkaytar, A. (2021). Effectiveness of the family training program for the teaching a leisure skill to children with special needs (LEP). Anadolu Journal of Educational Sciences International, 11(2), 505-528. https://doi.org/10.18039/ajesi.807138
• Kızılkaya, H. (2023). Ebeveynlerin BEP (Bireyselleştirilmiş Eğitim Programı) hazırlama sürecine katılımlarına ilişkin görüşlerinin değerlendirilmesi [Evaluation of the parents’ opinions on their participation in the preparation process of iep (individualized education program)]. EKEV Akademi Dergisi, 95, 109-121. https://doi.org/10.17753/sosekev.1269118
• Legano, L. A., Desch, L. W., Messner, S. A., Idzerda, S., Flaherty, E. G., Council on Child Abuse and Neglect, & Council on Children with Disabilities. (2021). Maltreatment of children with disabilities. Pediatrics, 147(5), e2021050920. https://doi.org/10.1542/peds.2021-050920
• MacKay, T., Knapp, M., Boyle, J. M., Iemmi, V., Connolly, M., & Rehill, A. (2017). The microsegmentation of the autism spectrum: Economic and research implications for Scotland. The Scottish Government.
• Mandell, D. S., Walrath, C. M., Manteuffel, B., Sgro, G., & Pinto-Martin, J. A. (2005). The prevalence and correlates of abuse among children with autism served in comprehensive community-based mental health settings. Child Abuse & Neglect, 29(12), 1359-1372. https://doi.org/10.1542/peds.2021-050920
• McDonnell, C. G., Boan, A. D., Bradley, C. C., Seay, K. D., Charles, J. M., & Carpenter, L. A. (2019). Child maltreatment in autism spectrum disorder and intellectual disability: Results from a population‐based sample. Journal of Child Psychology and Psychiatry, 60(5), 576-584. https://doi.org/10.1111/jcpp.12993
• McKenzie, R., & Dallos, R. (2017). Autism and attachment difficulties: Overlap of symptoms, implications and innovative solutions. Clinical Child Psychology and Psychiatry, 22(4), 632-648. https://doi:10.1177/1359104517707323
• Miles, M. B., & Huberman, A. M. (1994). Qualitative data analysis: An expanded sourcebook (2nd ed.). Sage Publications.
• Milot, T., St-Laurent, D., & Éthier, L. S. (2015). Intervening with severely and chronically neglected children and their families: The contribution of trauma- ınformed approaches. Child Abuse Review, 25(2), 89– 101. https://doi:10.1002/car.2376
• Miodrag, N., & Hodapp, R. M. (2010). Chronic stress and health among parents of children with intellectual and developmental disabilities. Current Opinion in Psychiatry, 23, 407–411. https://doi.org/10.1097/YCO.0b013e32833d8d3a
• 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(3), 187-201. https://doi.org/10.1080/10522158.2012.675624
• Öz, B., Yüksel, T., & Nasiroğlu, S. (2020). Depression-anxiety symptoms and stigma perception in mothers of children with autism spectrum disorder. Archives of Neuropsychiatry, 57(1), 50-55. https://doi.org/10.29399/npa.23655
• Özgönenel, S. Ö., & Girli, A. (2016). Otizmli kaynaştırma öğrencilerinin sınıflarında akran ilişkilerinin geliştirilmesine yönelik eğitim programının etkililiğinin incelenmesi [The examination of an education program to improve peer relationships of the autistic children integrated in classrooms]. İlköğretim Online, 15(1). https://doi.org/10.17051/io.2016.35667
• Öztürk, Y. (2011). Engelli çocuğa sahip ailelerin gereksinimlerinin ve aile yükünün belirlenmesi (Tez No. 297300) [Yüksek lisans tezi, Haliç Üniversitesi]. Yükseköğretim Kurulu Ulusal Tez Merkezi. [https://tez.yok.gov.tr/UlusalTezMerkezi/tezSorguSonucYeni.jsp]
• Padilla-Walker, L. M., & Nelson, L. J. (2012). Black Hawk down? Establishing helicopter parenting as a distinctconstruct from other forms of parental control during emerging adulthood. Journal of Adolescence, 35(5), 1177–1190. https://doi.org/10.1016/j.adolescence.2012.03.007
• Patton, M. Q. (2002). Qualitative research & evaluation methods (3rd ed.). Sage Publications.
• Peer, J. W., & Hillman, S. B. (2014). Stress and resilience for parents of children with intellectual and developmental disabilities: A review of key factors and recommendations for practitioners. Journal of Policy and Practice in Intellectual Disabilities, 11(2), 92-98. https://doi.org/10.1111/jppi.12062
• Rigles, B. (2017). The relationship between adverse childhood events, resiliency and health among children with autism. Journal of Autism and Developmental Disorders, 47(1), 187–202. https://doi.org/10.1007/s10803-016-2905-3
• Richa, S., Fahed, M., Khoury, E., & Mishara, B. (2014). Suicide in autism spectrum disorders. Archives of Suicide Research, 18(4), 327–339. https://doi.org/10.1080/13811118.2013.824834
• Roberts, P., & Priest, H. (2006). Reliability and validity in research. Nursing Standard, 20(44), 41-45. https://doi.org/10.7748/ns2006.07.20.44.41.c6560
• Sadıç, Ç. Ç., Coşkun, F., Katırcıoğlu, D. Ö., Özmutlu, A. G., & Selen, A. T. H. (2024). Evaluation of eating behavior, sleep problems, parental anxiety and depression levels of young children diagnosed with autism spectrum disorder and typically developing. Kocatepe Medical Journal, 25(4), 448-453.
• Sarı, H., Şentürk Barışık, C., Sarar Boyraz, D., & Özdemir, Ş. A. (2021). Otizm spektrum bozukluğu olan çocuğa sahip annelerin çocuklarına verilen destek eğitim hizmetleri ile ilgili görüşlerinin incelenmesi [Examining the views of mothers of children with autism spectrum disorder on the support education services provided to their children]. Turkish Special Education Journal: International, 3(1), 44-69.
• Seppälä, P., Vornanen, R., & Toikko, T. (2021). Multimorbidity and polyvictimization in children—An analysis on the association of children's disabilities and long-term illnesses with mental violence and physical violence. Child Abuse & Neglect, 122, 105350. https://doi.org/10.1016/j.chiabu.2021.105350
• Sheperis, C. J., Daniels, M. H., & Young, J. S. (2009). Counseling research: Quantitative, qualitative, and mixed methods. Pearson Education.
• Stoltenborgh, M., Bakermans‐Kranenburg, M. J., Alink, L. R., & van IJzendoorn, M. H. (2015). The prevalence of child maltreatment across the globe: Review of a series of meta‐analyses. Child Abuse Review, 24(1), 37-50. https://doi.org/10.1002/car.2353
• Strathearn, L., Giannotti, M., Mills, R., Kisely, S., Najman, J., & Abajobir, A. (2020). Long-term cognitive, psychological, and health outcomes associated with child abuse and neglect. Pediatrics, 146(4). https://doi.org/10.1542/peds.2020-0438
• Teague, S. J., Gray, K. M., Tonge, B. J., & Newman, L. K. (2017). Attachment in children with autism spectrum disorder: A systematic review. Research in Autism Spectrum Disorders, 35, 35-50. https://doi.org/10.1016/j.rasd.2016.12.002
• Tok, M., Sarı, S., & Tüfek, G. (2016). Otizm bilinci ve otizmli çocuğu olan ailelerin yaşadığı problemler (Anadolu Otizm Vakfında eğitim gören öğrenci aileleri örneği). https://www.academia.edu/31377938
• Trundle, G., Jones, K. A., Ropar, D., & Egan, V. (2023). Prevalence of victimisation in autistic individuals: A systematic review and meta-analysis. Trauma, Violence, & Abuse, 24(4), 2282–2296. https://doi.org/10.1177/15248380221093689
• Tümlü, C. (2021). Kabul ve Kararlılık Terapisi'ne dayalı psiko-eğitim programının Otizm Spektrum Bozukluğu olan çocuk (3-6 yaş) anneleri ve babalarının psikolojik uyumlarına etkisi (Tez No. 667060) [Doktora tezi, Anadolu Üniversitesi]. Yükseköğretim Kurulu Ulusal Tez Merkezi. [https://tez.yok.gov.tr/UlusalTezMerkezi/tezSorguSonucYeni.jsp]
• Vivanti, G., & Nuske, H. J. (2017). Autism, attachment, and social learning: Three challenges and a way forward. Behavioural brain research, 325, 251-259. https://doi.org/10.1016/j.bbr.2016.10.025
• Walsh, C., O’Connor, P., Walsh, E., et al. (2023). A systematic review of interventions to improve healthcare experiences and access in autism. Review Journal of Autism and Developmental Disorders, 10(2), 185–202. https://doi.org/10.1007/s40489-021-00279-2
• World Health Organization. (1999). Report of the consultation on child abuse prevention. World Health Organisation. https://apps.who.int/iris/handle/10665/65900.
• World Health Organization. (2018). Adverse childhood experiences international questionnaire (ACE-IQ). World Health Organisation. https://www.who.int/publications/m/item/adverse-childhood-experiences- international-questionnaire-(ace-iq)
• World Health Organisation. (2020). Global status report on preventing violence against children 2020. World Health Organisation. https://www.unicef.org/sites/default/files/2020-06/Global-status-report-on- preventing-violence-against-children-2020.pdf
• Yavuz, M., & Gümüşkaya, Ö. (2021). An analysis on the life satisfaction and resilience levels of parents of individuals with autism spectrum disorder and intellectual disabilities. Ankara University Faculty of Educational Sciences Journal of Special Education, 22(4), 799-825. https://doi.org/10.21565/ozelegitimdergisi.726030
• Yıldırım, A., & Şimşek, H. (2018). Sosyal bilimlerde nitel araştırma yöntemleri (11. baskı). Seçkin Yayıncılık.