Identifying the Educational Needs of Parents of Children Diagnosed with Autism Spectrum Disorder in Early Childhood
DOI:
https://doi.org/10.33308/26674874.2024382607Keywords:
Parent, Educational need, Autism Spectrum Disorder , Special educationAbstract
Educational competencies for parents include the ability to acquire skills related to activities that aid in the social and emotional development of their children as well as the ability to manage problem behaviour and monitor their children’s behaviour. Additionally, the aim is to enable children to acquire communication and interaction skills, self-care skills, psychomotor and cognitive skills, and to facilitate their children’s social interaction. The aim of this study is to determine the educational needs of parents having a child diagnosed with autism spectrum disorder in early childhood. The semi-structured interview, which is part of the qualitative research technique, was used in the present study. Data were gathered through a semi-structured interview form. The participants of this research consisted of 20 parents having a child diagnosed with autism spectrum disorder in early childhood and living in Konya. The obtained data were analyzed using a descriptive analysis technique. The results of the study have revealed that parents having a child diagnosed with autism spectrum disorder in early childhood feel inadequate about helping their children acquire social and emotional skills, cognitive skills, language and communication skills, self-care skills, fine and gross motor skills, and dealing with the problem behaviors exhibited by their children diagnosed with autism spectrum disorder. Parents reported that they need training programs on these issues. It is suggested that parent training programs should be effectively implemented and school administrators play a supportive role in parental education by cooperating with school counseling services and teachers.
Downloads
References
Abidin, R. R. (1995). Parenting Stress Index (PSI) manual (3rd ed.). Pediatric Psychology Press.
Ahmadi, A., Zalani, H. A., & Amrai, K. (2011). The needs of Iranian families of children with autism spectrum disorder, cross-cultural study. Procedia-Social and Behavioral Sciences, 15, 321-326. https://doi.org/10.1016/j.sbspro.2011.03.094 DOI: https://doi.org/10.1016/j.sbspro.2011.03.094
Aktaş, B. (2015). Aile eğitiminin otizmli çocuğa sahip ailelerin milieu öğretim tekniklerinden tepki isteme–model olmayı kullanmalarındaki etkililiği [Yayınlanmamış yüksek lisans tezi]. Abant İzzet Baysal Üniversitesi.
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (DSM-V®). American Psychiatric Pub. DOI: https://doi.org/10.1176/appi.books.9780890425596
Anderson, S. R., Jablonski, A. L., Thomeer, M. L., & Knapp, V. M. (2007). Self-help skills for people with autism: A systematic teaching approach. Woodbine House.
Bailey, D. B., & Simeonsson, R. J. (1988). Assessing needs of families with handicapped infants. Journal of Special Education, 22, 117–127. https://doi.org/10.1177/002246698802200113 DOI: https://doi.org/10.1177/002246698802200113
Bailey, D., Skinner, D., Correa, V., Arcia, E., Reyes-Blanes, M., Rodriguez, P., Vazquez- Montilla, E., & Skinner, M. (1999). Needs and supports reported by Latino families of young children with developmental disabilities. American Journal on Mental Retardation. 5, 437-445. https://doi.org/10.1352/0895-8017(1999)104%3C0437:nasrbl%3E2.0.co;2 DOI: https://doi.org/10.1352/0895-8017(1999)104<0437:NASRBL>2.0.CO;2
Baker-Ericzen M.J., Brookman-Frazee, L., & Stahmer, A. (2005). Stress levels and adaptability in parents of toddlers with and without autism spectrum disorders. Research and Practice for Persons with Severe Disabilities, 30(4), 194–204. https://doi.org/10.2511/rpsd.30.4.194 DOI: https://doi.org/10.2511/rpsd.30.4.194
Bavin, J., & Bower, E. (2008). Parents’ problems. In E. Bower (Ed.), Finnie’s handling the young child with cerebral palsy at home (4th ed.) (pp.57*72). Butterworth Heinemann. DOI: https://doi.org/10.1016/B978-0-7506-8810-9.00006-X
Bayraklı, H., & Sucuoglu, B. (2018). Empowering mothers of children with special needs in early childhood inclusion. International Journal of Early Childhood Special Education, 10(2), 121-143. https://doi.org/10.20489/intjecse.512387 DOI: https://doi.org/10.20489/intjecse.512387
Beighton, C., & Wills, J. (2016). Are parents identifying positive aspects to parenting their child with an intellectual disability or are they just coping? A qualitative exploration. Journal of Intellectual Disabilities, 21(4), 325–345. https://doi.org/10.1177/174462951665607 DOI: https://doi.org/10.1177/1744629516656073
Beresford, B. (1995). Resources and strategies: How parents cope with the care of a disabled child. Journal of Child Psychology and Psychiatry, 35(1), 171–209. https://doi.org/10.1111/j.1469-7610.1994.tb01136.x DOI: https://doi.org/10.1111/j.1469-7610.1994.tb01136.x
Blair, C., Granger, D. A., Willoughby, M., Mills-Koonce, R., Cox, M., Greenberg, M. T., ... Fortunato, C. K. (2011). Salivary cortisol medi-ates effects of poverty and parenting on executive functions in early childhood. Child Development, 82, 1970–1984. https://doi.org/10.1111/j.1467-8624.2011.01643.x DOI: https://doi.org/10.1111/j.1467-8624.2011.01643.x
Blake, J. M., Rubenstein, E., Tsai, P. C., Rahman, H., Rieth, S. R., Ali, H., & Lee, L. C. (2017). Lessons learned while developing, adapting and implementing a pilot parent-mediated behavioural intervention for children with autism spectrum disorder in rural Bangladesh. Autism, 21(5), 611-621. https://doi.org/10.1177/136236131668389 DOI: https://doi.org/10.1177/1362361316683890
Bolat, E. Y., Gürsoy, F., & Strom, R. (2016). Öğretmen olarak anne baba envanteri: Geçerlik ve güvenirlik çalışması. Mersin Üniversitesi Eğitim Fakültesi Dergisi, 12(3), 961-970. https://doi.org/10.17860/mersinefd.282394 DOI: https://doi.org/10.17860/mersinefd.282394
Booth, T., & Booth, W. (1994) Parenting under pressure: mothers and fathers with learning difficulties. Open University Press.
Cavkaytar, A., Ceyhan, E., Adiguzel, O. C., Uysal, H., & Garan, O. (2012). Investigating education and support needs of families who have children with ıntellectual disabilities. Online Submission, 3(4), 79-99.
Cengiz, S., Yıldız, M. N., & Peker, A. (2021). Özel gereksinimli çocuğa sahip ebeveynler ile tipik gelişim gösteren çocuğa sahip ebeveynlerin stres ve yaşam doyum düzeylerinin incelenmesi. OPUS International Journal of Society Researches, 17(36), 2940-2956. https://doi.org/10.26466/opus.832440 DOI: https://doi.org/10.26466/opus.832440
Çetin, K. (2018). Engelli çocuklara sahip ailelerin çocuklarını kabul red düzeyleriyle sosyal destek düzeylerinin incelenmesi. Adnan Menderes Üniversitesi Eğitim Fakültesi Eğitim Bilimleri Dergisi, 9(2), 137-154.
Connolly, M., & Gersch, I. (2013). A support group for parents of children on a waiting list for an assessment for autism spectrum disorder. Theory, Research and Practice in Educational Psychology, 29, 293–308. https://doi.org/10.1080/02667363.2013.841128 DOI: https://doi.org/10.1080/02667363.2013.841128
Creswell, J. W. (2007). Research design: qualitative, quantitative and mixed method aproaches. SAGE Publications.
Darıca, N., Abioğlu, Ü., Abidoğlu, Ş., & Gümüşcü, Ş. (2005). Otizm ve otistik çocuklar. Özgür Yayınları
Demircan, H. Ö. (2018). Okul öncesi eğitimde sistemi genişletmek: aile-ebeveyn bağlılığı, işbirliği, katılımı ve eğitimi. Elementary Education Online, 17(4). 1-19. DOI: https://doi.org/10.17051/ilkonline.2019.507008
Dere Çiftçi, H. (2015). Determining the educational needs of parents of mentally deficient children. Journal of Human Sciences, 12(1), 36–54. DOI: https://doi.org/10.14687/ijhs.v12i1.2840
DuBay, M., Watson, L. R., & Zhang, W. (2018). In search of culturally appropriate autism interventions: perspectives of Latino caregivers. Journal of Autism and Developmental Disorders, 48, 1623–1639. https://doi.org/10.1007/s10803-017-3394-8. DOI: https://doi.org/10.1007/s10803-017-3394-8
Dunlap, K. (2019). Family empowerment: One outcome of parental participation in cooperative preschool education. Routledge. DOI: https://doi.org/10.4324/9781315790770
Dunn, M., Burbine, T., Bowers, C., & Tantleff-Dunn, S. (2001). Moderators of stress in parents of children with autism. Community Mental Health Journal, 37(1), 39–52. https://doi.org/10.1023/A:1026592305436 DOI: https://doi.org/10.1023/A:1026592305436
Ercan, F. Z., Kirlioğlu, M., & Kalaycı Kirlioğlu, H. İ. (2019). Engelli çocuğa sahip ailelerin bu durumu kabulleniş süreçleri ve bu duruma dair görüşleri. Sosyal Politika Çalışmaları Dergisi, 19(44), 597-628. https://doi.org/10.21560/spcd.v19i49119.459666 DOI: https://doi.org/10.21560/spcd.v19i49119.459666
Fox, F., Aabe, N., Turner, K., Redwood, S., & Rai, D. (2017). “It was like walking without knowing where I was going”: a qualitative study of autism in a UK Somali migrant community. Journal of Autism and Developmental Disorders, 47, 305–315. https://doi.org/10.1007/ s10803-016-2952-9. DOI: https://doi.org/10.1007/s10803-016-2952-9
Gaad, E., & Thabet, R. (2016). Behaviour support training for parents of children with autism spectrum disorder. Journal of Education and Learning, 5, 133–153.http://dx.doi.org/10.5539/jel.v5n1p133 DOI: https://doi.org/10.5539/jel.v5n1p133
Gökçe, S. (2017). Otizm Spektrum Bozukluğu olan çocuğa sahip ailelerin katıldıkları aile eğitimi programı sonrasındaki yaşam döngüsüne ilişkin görüşleri [Yayınlanmamış yüksek lisans tezi]. Anadolu Üniversitesi.
Grahame, V., Brett, D., Dixon, L., McConachie, H., Lowry, J., Rodgers, J., & Couteur, A. (2015). Managing repetitive behaviours in young children with autism spectrum disorder (ASD): A pilot randomised controlled trial of a new parent. group intervention. Journal of Autism and Developmental Disorders, 45, 3168–3182. https://doi.org/10.1007/s10803-015-2474-x DOI: https://doi.org/10.1007/s10803-015-2474-x
Hall, H. R., & Graff, J. C. (2010). Parenting challenges in families of children with autism: A pilot study. Issues in Comprehensive Pediatric Nursing, 33(4), 187-204. https://doi.org/10.3109/01460862.2010.528644 DOI: https://doi.org/10.3109/01460862.2010.528644
Hastings, R.P., & Johnson, E. (2001). Stress in UK families conducting intensive home-based behavioral intervention for their young child with autism. Journal of Autism and Developmental Disorders, 31(3), 62–83. https://doi.org/10.1023/A:1010799320795 DOI: https://doi.org/10.1023/A:1010799320795
İlhan, T. (2017). Özel gereksinimli 3-6 yaş çocuklarının ebeveynlerinin stres düzeyleri ile rolleri arasındaki ilişki. Ankara Üniversitesi Eğitim Bilimleri Fakültesi Özel Eğitim Dergisi, 18(03), 383-400. https://doi.org/10.21565/ozelegitimdergisi.286786 DOI: https://doi.org/10.21565/ozelegitimdergisi.286786
Johnson, C., & Mash, E. J. (1989). A measure of parenting satisfaction and efficacy. Journal of Clinical Child Psychology, 18(2), 167-175. https://doi.org/10.1207/s15374424jccp1802_8 DOI: https://doi.org/10.1207/s15374424jccp1802_8
Jones, T. L., & Prinz, R. J. (2005). Potential roles of parental self-efficacy in parent and child adjustment: a review. Clinical Psychology Review, 25, 341-363. https://doi.org/10.1016/j.cpr.2004.12.004 DOI: https://doi.org/10.1016/j.cpr.2004.12.004
Karaca, M. A. (2021). Ebeveyn eğitim programinin erken çocukluk dönemindeki otizmli çocuğa sahip ebeveynlerin eğitsel yeterliklerine etkisinin incelenmesi [Yayınlanmamış doktora tezi]. Necmettin Erbakan Üniversitesi.
Karasar, N. (2014). Bilimsel araştırma yöntemleri. Nobel Yayıncılık.
Keenan, M., Dillenburger, K., Doherty, A., Byrne, J., & Gallagher, S. (2007). Meeting the Needs of Families Living with Children Diagnosed with Autism Spectrum Disorder.University of Ulster.
Kenneth, W. P., Hodgson, J. L., McCammon, S. L., & Lamson, A. L. (2009). Caring for an individual with autism disorder: A qualitative analysis. Journal of Intellectual & Developmental Disability, 34, 27-35. https://doi.org/10.1080/13668250802690930 DOI: https://doi.org/10.1080/13668250802690930
Küçüker, S. (2001). Erken eğitimin gelişimsel geriliği olan çocukların anne-babalarının stres ve depresyon düzeyleri üzerindeki etkisinin incelenmesi. Ankara Üniversitesi Özel Eğitim Dergisi, 3(1) 1-11. https://doi.org/10.1501/Ozlegt_0000000055 DOI: https://doi.org/10.1501/Ozlegt_0000000055
Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Sage. DOI: https://doi.org/10.1016/0147-1767(85)90062-8
Matson, J. L., Hattier, M. A., & Belva, B. (2012). Treating adaptive living skills of persons with autism using applied behavior analysis: A review. Research in Autism Spectrum Disorders, 6(1), 271–276. https://doi.org/10.1016/j.rasd.2011.05.008 DOI: https://doi.org/10.1016/j.rasd.2011.05.008
Mattson, J. M. G., Roth, M., & Sevlever, M. (2016). Personal hygiene. In J. K. Luiselli (Ed.), Behavioral health promotion and intervention in intellectual and developmental disabilities (pp. 43–72). Springer. DOI: https://doi.org/10.1007/978-3-319-27297-9_3
McConnell, D., Savage, A., Sobsey, D. & Uditsky, B. (2015). Benefit finding or finding benefits: the positive impact of having a disabled child. Disability and Society, 30(1) 29–45. https://doi.org/10.1080/09687599.2014.984803 DOI: https://doi.org/10.1080/09687599.2014.984803
McDuffie, A., Machalicek, W., Oakes, A., Haebig, E., Weismer, S. E., & Abbeduto, L. (2013). Distance video-teleconferencing in early ıntervention: Pilot study of a naturalistic parent-ımplemented language ıntervention. Topics in Early Childhood Special Education, 33(3), 172–185. https://doi.org/10.1177/0271121413476348 DOI: https://doi.org/10.1177/0271121413476348
Merriam, S. B. (2009). Qualitative research: A guide to design and implementation. JosseyBass.
Merriam, S. B. (2013). Nitel araştırma desen ve uygulama için bir rehber (Çev. S. Turan). Nobel Akademik Yayıncılık.
Montes, G., & Halterman, J.S. (2007). Psychological functioning and coping among mothers of children with autism. A population-based study. Pediatrics, 119(5), 1040–1046. https://doi.org/10.1542/peds.2006-2819 DOI: https://doi.org/10.1542/peds.2006-2819
Mukaddes, N. M., Kaynak, F. N., Kinnali, G., Besikci, H., & Issever, H. (2004). Psychoeducational treatment of children with autism and reactive attachment disorder. Autism, 8, 101–109. https://doi.org/10.1177/136236130404064 DOI: https://doi.org/10.1177/1362361304040642
Onyishi, C. N., Sefotho, M. M., & Victor-Aibodion, V. (2023). Psychological distress among parents of children with autism spectrum disorders: A randomized control trial of cognitive behavioural therapy. Research in Autism Spectrum Disorders, 100, 102070. https/10.1016/j.rasd.2022.102070 DOI: https://doi.org/10.1016/j.rasd.2022.102070
Özdemir, M. (2010). Nitel veri analizi: Sosyal bilimlerde yöntembilim sorunsalı üzerine bir çalışma. Eskişehir Osmangazi Üniversitesi Sosyal Bilimler Dergisi, 11(1), 323-343.
Preece, D., Symeou, L., Stošić, J., Troshanska, J., Mavrou, K., Theodorou, E., & Frey Škrinjar, J. (2017). 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. https://doi.org/10.1080/08856257.2016.1223399 DOI: https://doi.org/10.1080/08856257.2016.1223399
Şahin, F. T., & Özbey, B. U. S. (2007). Aile eğitim programlarına niçin gereksinim duyulmuştur? Aile eğitim programları neden önemlidir? Sosyal Politika Çalışmaları Dergisi, 12(12), 7-12.
Sander, J. L., & Morgan, S. B. (1997). Family stress and adjustment as perceived by parents of children with autism or Down syndrome: Implications for intervention. Child and Family Behavior Therapy, 19, 15–32. https://doi.org/10.1300/J019v19n04_02 DOI: https://doi.org/10.1300/J019v19n04_02
Sanders, M. R., (2003). Triple P – Positive Parenting Program: A population approach to promoting competent parenting. Australian e-Journal for the Advancement of Mental Health, 2(3), 127-143. https://doi.org/10.5172/jamh.2.3.127 DOI: https://doi.org/10.5172/jamh.2.3.127
Sarı, H. (2003). Özel eğitime muhtaç öğrencilerin eğitimleriyle ilgili çağdaş öneriler. Pegem Yayıncılık.
Sarı, H., & Karaca, M.A. (2016, 12 05). Özel eğitim öğretmenlerinin uygulanan aile eğitim programları hakkındaki görüşlerinin değerlendirilmesi, Sarı, H. (Ed.), III. ELMIS Özel Eğitim Kongresi, Konya. https://www.konyaozelegitim.org/elmis2016/tr/index.php?page=1&lang=tr
Sarı, H., Atbaşı, Z., & Çitil, M. (2017). Özel eğitim ve rehabilitasyon merkezlerinde görev yapan öğretmenlerin aile eğitimi konusundaki yeterliliklerinin belirlenmesi. Kırşehir Eğitim Fakültesi Dergisi, 18(3), 668-684. DOI: https://doi.org/10.29299/kefad.2017.18.3.035
Schopler, E., & Reichler, R. (1971). Parents as co-therapists in the treatment of psychotic children. Journal of Autism and Childhood Schizophrenia, 1(1), 87–102. DOI: https://doi.org/10.1007/BF01537746
Seligman, M., & Darling, R. B. (2007). Ordinary families, special children, a systems approach to childhood disability (3rd ed.). Guilford Press.
Stahmer, A. C., & Gist, K. (2001). The effects of an accelerated parent education program on technique mastery and child outcome. Journal of Positive Behavior Interventions, 3, 75-82. https://doi.org/10.1177/109830070100300203 DOI: https://doi.org/10.1177/109830070100300203
Stuttard, L., Beresford, B., Clarke, S., Beecham, J., Todd, S., & Bromley, J. (2014). Riding the rapids: Living with autism or disability - An evaluation of a parenting support intervention for parents of disabled children. Research in Developmental Disabilities, 35, 2371–2383. https://doi.org/10.1016/j.ridd.2014.05.021 DOI: https://doi.org/10.1016/j.ridd.2014.05.021
Türnüklü, A. (2000). Eğitim bilim araştırmalarında etkin olarak kullanılabilecek nitel bir araştırma tekniği: Görüşme. Kuram ve Uygulamada Eğitim Yönetimi, 6(24), 543- 559.
Ulaşanel, M. (1994). Anne babaların durumluk ve sürekli kaygı düzeyleri ile zihinsel engelli çocuğun kişisel uyum düzeyi arasındaki ilişkiler [Yayınlanmamış yüksek lisans tezi]. Anadolu Üniversitesi.
Ünlü, E. (2021). Özel eğitime gereksinim duyan çocuklar ve özel eğitim. İ.H. Diken (Eds.) Özel Eğitime Gereksinimi Olan Öğrenciler ve Özel Eğitim (3-29) In. Pegem Publication DOI: https://doi.org/10.14527/9786055885267.01
Wang, P. (2008). Effects of a parent training program on the interactive skills of parents of children with autism in China. Journal of Policy and Practice in Intellectual Disabilities, 5, 96–104. https://doi.org/10.1111/j.1741-1130.2008.00154.x DOI: https://doi.org/10.1111/j.1741-1130.2008.00154.x
White, C., Woodfield, K., & Ritchie, J. (2003). Reporting and presenting qualitative data. J. Ritchie, and J. Lewis, (Eds.), Qualitative research practice: A guide for social science students and researchers (287-315) In. Sage Publication
Woodgate, R. T., Ateah, C., & Secco, L. (2008). Living in world of our own: The experience of parents who have a child with autism. Qualitative Health Research, 18, 1075-1083. https://doi.org/10.1177/10497323083201 DOI: https://doi.org/10.1177/1049732308320112
Yeşil, R., Şahan, E., & Aslanderen, M. (2018). Ebeveynin çocuk eğitimi konusundaki yeterliklerinin bazı değişkenlere göre incelenmesi. Ahi Evran Üniversitesi Kırşehir Eğitim Fakültesi Dergisi, 19(3), 1828-1849. https://doi.org/10.29299/kefad.2018.19.03.002 DOI: https://doi.org/10.29299/kefad.2018.19.03.002
Yıldırım, A., & Şimşek, H. (2013). Sosyal bilimlerde nitel araştırma yöntemleri (6. Baskı). Seçkin Yayıncılık.
Yu, B. (2013). Issues in bilingualism and heritage language maintenance: perspectives of minority-language mothers of children with autism spectrum disorders. American Journal of Speech-Language Pathology, 22(1), 10–24. https://doi.org/10.1044/1058-0360(2012/10-0078) DOI: https://doi.org/10.1044/1058-0360(2012/10-0078)
Downloads
Published
How to Cite
Issue
Section
License
Copyright (c) 2024 Journal of Education for Life
![Creative Commons License](http://i.creativecommons.org/l/by-nc-nd/4.0/88x31.png)
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
I accept that the Owner of Journal of Education for Life, the Editor, Associate Editors, Reviewers and the Editorial Board cannot be hold responsible regarding the scope, the findings, the discussion and conclusion of the manuscript submitted.
I declare to the editorship of Journal of Education for Life that the manuscript is original and has not been published anywhere else or is not under evaluation process for any other journal.
I approve that I grant Journal of Education for Life as the sole and exclusive right and license to publish for the full legal term of copyright of my manuscript concurring with article 5846 / 22-23-25 while I retain copyright in the work.