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Öz-Belirleme ve Yaşam Kalitesi: Otizm Spektrum Bozukluğu Olan Genç Yetişkinler

Yıl 2024, , 148 - 162, 22.08.2024
https://doi.org/10.17860/mersinefd.1444166

Öz

Bağımsızlık, bireyin kendisinden beklenen becerileri bir başkasına bağımlı olmadan sergileyerek toplumun aktif bir üyesi olmasıdır. Bireyin bağımsızlığını doğrudan etkileyen ve yetersizlikten kaynaklanan pek çok sınırlılığın erken çocukluk döneminden itibaren sağlanan eğitsel düzenlemeler ve uyarlamalarla azaltılabildiği bilinmektedir. Ancak bu desteklerin yalnızca erken çocukluk ve çocukluk dönemi için değil yetişkinlik ve sonrası için de bağımsız yaşama hazırlayıcı olması önemlidir. Bütün bireyler gibi otizm spektrum bozukluğu olan genç yetişkinlerin de kendi yaşamlarında söz sahibi olarak kendilerine ilişkin hedef belirleme ve bu hedefleri gerçekleştirmek için planlar yapma, bütün bunları nasıl yapacaklarını öğrenme ve bu şekilde yaşam kalitelerini arttırmaya gereksinimleri ve hakları vardır. Öz-belirleme, bireyin yaşamına ilişkin kararlarını yalnızca kendi inancı, iradesi ve değer yargıları doğrultusunda bağımsız olarak almasıdır. Çok boyutlu bir yapı olan yaşam kalitesi ise bireyin fiziksel, duygusal ve maddi refah, kişilerarası ilişkiler, sosyal katılım, haklar ve kişisel gelişim ve öz-belirleme dahil olmak üzere birçok alandaki refahını veya yaşamdan memnuniyetini ifade eden bir kavramdır. Otizm spektrum bozukluğu olan genç yetişkinlerle gerçekleştirilen araştırmaların bulguları öz-belirleme düzeyi yüksek olan bireylerin bağımsızlıklarının arttığını, kendilerinin ve ailelerinin yaşam kalitelerinin daha yüksek olduğunu göstermektedir. Bu araştırmada ulusal özel eğitim alanyazında henüz yeni bir kavram olduğu düşünülen öz-belirlemenin ne olduğu, otizm spektrum bozukluğu olan genç yetişkinlerin yaşamında öz-belirleyiciliğin önemi, yaşam kalitesi kavramı ve yaşam kalitesi ile öz-belirleme arasındaki ilişki açıklanmıştır.

Kaynakça

  • Alenazi, D. S., Hammad, S. M., & Mohamed, A. E. (2020). Effect of autism on parental quality of life in Arar City, Saudi Arabia. Journal of Family & Community Medicine, 27(1), 15-21. https://doi.org/10.4103%2Fjfcm.JFCM_157_19
  • Allen, K. D., Wallace, D. P., Renes, D., Bowen, S. L., & Burke, R. V. (2010). Use of video modeling to teach vocational skills to adolescents and young adults with autism spectrum disorders. Education and Treatment of Children, 33(3), 339-349. https://doi.org/10.1353/etc.0.0101
  • Altena, A. M., Boersma, S. N., Beijersbergen, M. D., & Wolf, J. R. (2018). Cognitive coping in relation to self-determination and quality of life in homeless young adults. Children and Youth Services Review, 94, 650-658. https://doi.org/10.1016/j.childyouth.2018.09.007
  • Aykut, Ç. (2021). Gelişimsel yetersizlikten etkilenmiş öğrencilerin eğitiminde öz-belirlemeli davranışları destekleme İçinde Ç. Aykut ve N. Karasu (Ed.), Gelişimsel yetersizlikten etkilenmiş öğrencilerin eğitiminde öz-belirlemeli davranışları destekleme (s. 1-10). Vize Yayıncılık
  • Azad, G. F., Dillon, E., Feuerstein, J., Kalb, L., Neely, J., & Landa, R. (2020). Quality of life in school-aged youth referred to an autism specialty clinic: A latent profile analysis. Journal of Autism and Developmental Disorders, 50, 1269-1280. https://doi.org/10.1007/s10803-019-04353-x
  • Baack B. N. Abad, N., Yankey, D. Kahn, K. E. Razzaghi, Brookmeyer H. K., Kolis, J.; Wilhelm, E.; Nguyen, K. H., & Singleton, J. A. (2021)."COVID-19 Vaccination Coverage and Intent Among Adults Aged 18-39 Years-United States, March-May 2021" Morbidity and Mortality Weekly Report. 70 (25), 928-933. doi:10.15585/mmwr.mm7025e2.
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  • Black, M. H., Greenwood, D. L., Hwa, J. C. C., Pivac, J., Tang, J., & Clarke, P. J. (2023). What Are You Worried About? Content and Extent of Worry in Autistic Adults. Journal of Autism and Developmental Disorders, 1-15. https://doi.org/10.1007/s10803-023-05963-2
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  • Burke, R. V., Allen, K. D., Howard, M. R., Downey, D., Matz, M. G., & Bowen, S. L. (2013). Tablet-based video modeling and prompting in the workplace for individuals with autism. Journal of Vocational Rehabilitation, 38(1), 1-14. https://doi.org/10.3233/JVR-120616
  • Camarena, P. M., & Sarigiani, P. A. (2009). Postsecondary educational aspirations of high-functioning adolescents with autism spectrum disorders and their parents. Focus on Autism and Other Developmental Disabilities, 24(2), 115-128. https://doi.org/10.1177/1088357609332675
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Self-Determination and Quality of Life: Young Adults with Autism Spectrum Disorders

Yıl 2024, , 148 - 162, 22.08.2024
https://doi.org/10.17860/mersinefd.1444166

Öz

Independence is the ability of an individual to be an active member of society by demonstrating the skills expected of him/her without being dependent on someone else. It is known that many limitations arising from disability that directly affect the independence of the individual can be reduced by educational arrangements and adaptations provided from early childhood. However, it is important that these supports prepare individuals for independent living not only in early childhood and childhood but also in adulthood and beyond. Like all individuals, young adults with autşsm spectrum disorder have the need and right to have a say in their own lives, to set goals for themselves, to make plans to realize these goals, to learn how to do all these things, and to improve their quality of life in this way. Self-determination is making decisions about one's life independently in line with one's own beliefs, will and value judgments. Quality of life, a multidimensional construct, is a concept that refers to an individual's well-being or satisfaction with life in many areas, including physical, emotional and material well-being, interpersonal relationships, social participation, rights and personal development and self-determination. The findings of studies conducted with young adults with autism spectrum disorder show that individuals with high levels of self-determination have increased independence and a higher quality of life for themselves and their families. In this study, the concept of self-determination, which is considered to be a new concept in the national special education literature, the importance of self-determination in the lives of young adults with autism spectrum disorder, the concept of quality of life and the relationship between quality of life and self-determination were explained.

Kaynakça

  • Alenazi, D. S., Hammad, S. M., & Mohamed, A. E. (2020). Effect of autism on parental quality of life in Arar City, Saudi Arabia. Journal of Family & Community Medicine, 27(1), 15-21. https://doi.org/10.4103%2Fjfcm.JFCM_157_19
  • Allen, K. D., Wallace, D. P., Renes, D., Bowen, S. L., & Burke, R. V. (2010). Use of video modeling to teach vocational skills to adolescents and young adults with autism spectrum disorders. Education and Treatment of Children, 33(3), 339-349. https://doi.org/10.1353/etc.0.0101
  • Altena, A. M., Boersma, S. N., Beijersbergen, M. D., & Wolf, J. R. (2018). Cognitive coping in relation to self-determination and quality of life in homeless young adults. Children and Youth Services Review, 94, 650-658. https://doi.org/10.1016/j.childyouth.2018.09.007
  • Aykut, Ç. (2021). Gelişimsel yetersizlikten etkilenmiş öğrencilerin eğitiminde öz-belirlemeli davranışları destekleme İçinde Ç. Aykut ve N. Karasu (Ed.), Gelişimsel yetersizlikten etkilenmiş öğrencilerin eğitiminde öz-belirlemeli davranışları destekleme (s. 1-10). Vize Yayıncılık
  • Azad, G. F., Dillon, E., Feuerstein, J., Kalb, L., Neely, J., & Landa, R. (2020). Quality of life in school-aged youth referred to an autism specialty clinic: A latent profile analysis. Journal of Autism and Developmental Disorders, 50, 1269-1280. https://doi.org/10.1007/s10803-019-04353-x
  • Baack B. N. Abad, N., Yankey, D. Kahn, K. E. Razzaghi, Brookmeyer H. K., Kolis, J.; Wilhelm, E.; Nguyen, K. H., & Singleton, J. A. (2021)."COVID-19 Vaccination Coverage and Intent Among Adults Aged 18-39 Years-United States, March-May 2021" Morbidity and Mortality Weekly Report. 70 (25), 928-933. doi:10.15585/mmwr.mm7025e2.
  • Billstedt, E., Gillberg, I. C., & Gillberg, C. (2011). Aspects of quality of life in adults diagnosed with autism in childhood: A population-based study. Autism, 15(1), 7-20. https://doi.org/10.1177/1362361309346066.
  • Black, M. H., Greenwood, D. L., Hwa, J. C. C., Pivac, J., Tang, J., & Clarke, P. J. (2023). What Are You Worried About? Content and Extent of Worry in Autistic Adults. Journal of Autism and Developmental Disorders, 1-15. https://doi.org/10.1007/s10803-023-05963-2
  • Brolin, D. E. (1997). Life centered career education: A competency-based approach. Council for Exceptional Children, Reston: VA
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  • Konrad, M., Clark, K. A., & Test, D. W. (2017). Effects of GO 4 IT... NOW! strategy instruction on expository writing skills for students with disabilities. Career Development and Transition for Exceptional Individuals, 40(1), 45-55. https://doi.org/10.1177/2165143416680884
  • Kuhlthau, K. A., McDonnell, E., Coury, D. L., Payakachat, N., & Macklin, E. (2018). Associations of quality of life with health-related characteristics among children with autism. Autism, 22(7), 804-813. https://doi.org/10.1177/1362361317704420
  • Lachapelle, Y., Wehmeyer, M. L., Haelewyck, M. C., Courbois, Y., Keith, K. D., Schalock, R., ... & Walsh, P. N. (2005). The relationship between quality of life and self‐determination: an international study. Journal of Intellectual Disability Research, 49(10), 740-744. https://doi.org/10.1111/j.1365-2788.2005.00743.x
  • Lamash, L., Sagie, D., Selanikyo, E., Meyer, S., & Gal, E. (2024). Autism identity in young adults and the relationships with participation, quality of life, and well-being. Research in Autism Spectrum Disorders, 111(-), 1-10. https://doi.org/10.1016/j.rasd.2023.102311
  • Levy, A., & Perry, A. (2011). Outcomes in adolescents and adults with autism: A review of the literature. Research in Autism Spectrum Disorders, 5(4), 1271-1282. https://doi.org/10.1016/j.rasd.2011.01.023
  • Lindholm, M. M. (2007). Stress, coping, and quality of life in families raising children with autism. [Unpublished Doctoral Dissertation. California School of Professional Psychology, Alliant International University]
  • Lubin, J. (2020). Self-determination skills of college students with autism spectrum disorder (ASD). SACAD: John Heinrichs Scholarly and Creative Activity Days. 2020(40) Kansas, United States. https://scholars.fhsu.edu/sacad/vol2020/iss2020/55
  • Marcotte, J., Grandisson, M., & Milot, É. (2023). What makes home environments favorable to independence: Perspectives of autistic people and their parents. Disability and Rehabilitation, 45(10), 1684-1695. https://doi.org/10.1080/09638288.2022.2074153
  • McClelland, M., Geldhof, J., Morrison, F., Gestsdóttir, S., Cameron, C., Bowers, E., ... & Grammer, J. (2018). Self-regulation. In. N. Halfon, C.B. Forrest, R. M. Lerner, E. M. Faustman (Eds.), Handbook of life course health development (pp.275-298). Springer.
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  • Milton, D. E. (2014). Autistic expertise: A critical reflection on the production of knowledge in autism studies. Autism, 18(7), 794-802. https://doi.org/10.1177/1362361314525281
  • Muniandy, M., Richdale, A. L., & Lawson, L. P. (2023). Stress and well‐being in autistic adults: Exploring the moderating role of coping. Autism Research, 2023(16), 2220-2233. https://doi.org/10.1002/aur.3028
  • Nirje, B. (1972). Normalization: The principle of normalization. Newyork: Oxford Press.
  • Nota, L., Ferrari, L., Soresi, S., & Wehmeyer, M. (2007). Self‐determination, social abilities, and the quality of life of people with intellectual disability. Journal of Intellectual Disability Research, 51(11), 850-865. Doi: https://doi.org/10.1111/j.1365-2788.2006.00939.x
  • Orum-Çattık, E., & Ergenekon, Y. (2019). Otizm spektrum bozukluğu olan bireylere bağımsız yaşam becerilerinin öğretildiği araştırmaların incelenmesi. Anadolu Journal of Educational Sciences International, 9(2), 572-607. https://doi.org/10.18039/ajesi.577594
  • Powers, L. E., Geenen, S., Powers, J., Pommier-Satya, S., Turner, A., Dalton, L. D., ... & Swank, P. (2012). My life: Effects of a longitudinal, randomized study of self-determination enhancement on the transition outcomes of youth in foster care and special education. Children and Youth Services Review, 34(11), 2179-2187. https://doi.org/10.1016/j.childyouth.2012.07.018
  • Renty, J. O., & Roeyers, H. (2006). Quality of life in high-functioning adults with autism spectrum disorder: The predictive value of disability and support characteristics. Autism, 10(5), 511-524. https://doi.org/10.1177/1362361306066604
  • Robertson, S. M. (2009). Neurodiversity, quality of life, and autistic adults: Shifting research and professional focuses onto real-life challenges. Disability Studies Quarterly, 30(1), 1-15. https://doi.org/10.18061/dsq.v30i1.1069 Robins, R. W., Fraley, R. C., Roberts, B. W., & Trzesniewski, K. H. (2001). A longitudinal study of personality change in young adulthood. Journal of Personality, 69(4), 617-640. https://doi.org/10.1111/1467-6494.694157
  • Robson, D. A., Allen, M. S., & Howard, S. J. (2020). Self-regulation in childhood as a predictor of future outcomes: A meta-analytic review. Psychological Bulletin, 146(4), 324-354. https://doi.org/10.1037/bul0000227
  • Ryan, R. M., & Deci, E. L. (2017). Self-determination theory: Basic psychological needs in motivation, development, and wellness. Guilford Publications.
  • Ryan, R. M., & Deci, E. L. (2019). Supporting autonomy, competence, and relatedness: The coaching process from a self-determination theory perspective. In S. English, J. M. Sabatine, & P. Brownell (Eds.), Professional coaching: Principles and practice (pp. 231–245). Springer Publishing Company.
  • Schall, C. M., & McDonough, J. T. (2010). Autism spectrum disorders in adolescence and early adulthood: Characteristics and issues. Journal of Vocational Rehabilitation, 32(2), 81-88. doi: 10.3233/JVR-2010-0503.
  • Shogren, K. A. (2017). Self-determination and transition planning, Baltimore: Paul Brookes Publication.
  • Shogren, K. A., Palmer, S. B., Wehmeyer, M. L., Williams-Diehm, K., & Little, T. D. (2012). Effect of intervention with the self-determined learning model of instruction on access and goal attainment. Remedial and Special Education, 33(5), 320-330. https://doi.org/10.1177/001440291207800201
  • Shogren, K. A., Raley, S. K., Wehmeyer, M. L., Grandfield, E., Jones, J., & Shaw, L. A. (2019). Exploring the relationships among basic psychological needs satisfaction and frustration, agentic engagement, motivation, and self-determination in adolescents with disabilities. Advances in Neurodevelopmental Disorders, 3(2), 119-128. https://doi.org/10.1007/s41252-018-0093-1
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  • Sosnowy, C., Silverman, C., & Shattuck, P. (2018). Parents’ and young adults’ perspectives on transition outcomes for young adults with autism. Autism, 22(1), 29-39.
  • Tanner, J. L., & Arnett, J. J. (2016). The emergence of emerging adulthood: The new life stage between adolescence and young adulthood. In Routledge handbook of youth and young adulthood (pp. 50-56). Routledge.
  • Test, D. W., Mazzotti, V. L., Mustian, A. L., Fowler, C. H., Kortering, L., & Kohler, P. (2009). Evidence-based secondary transition predictors for improving postschool outcomes for students with disabilities. Career Development for Exceptional Individuals, 32(3), 160-181. https://doi.org/10.1177/0885728809346960
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  • Ünal-Karagüven, M. H., Karaman-Ekşioğlu, M., & Gül, Ç. (2020). Özerklik teorisi ve sosyal ilişki gereksinimi ölçeğinin Türkçe’ye adaptasyonu. IBAD Sosyal Bilimler Dergisi, 2020(6), 366-377. https://doi.org/10.21733/ibad.656251
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  • Warter, E. H. (2009). Promoting resiliency in families of individuals diagnosed with an autism spectrum disorder: The relationship between parental beliefs and family adaptation. Boston: Boston College.
  • Wehmeyer M. L., Agran M., & Hughes, C. (1998) Teaching self-determination to students with disabilities: Basic skills for successful transition. Paul Brookes
  • Wehmeyer, M. L. (2020). The importance of self-determination to the quality of life of people with intellectual disability: A perspective. International Journal of Environmental Research and Public Health, 17(19), 1-7. https://doi.org/10.3390/ijerph17197121
  • Wehmeyer, M. L., & Schalock, R. L. (2001). Self-determination and quality of life: Implications for special education services and supports. Focus on Exceptional Children, 33(8), 1-16.
  • Wehmeyer, M. L., & Shogren, K. A. (2016). Self-determination and choice. In N. Singh (Ed.), Handbook of evidence-based practices in intellectual and developmental disabilities (pp. 561-584). Springer.
  • Wheeler, J. J., Mayton, M. R., & Carter, S. T. (2014). Methods for teaching students with autism spectrum disorders evidence-based practices. Pearson.
  • Milli Eğitim Bakanlığı (2024). Özel eğitim meslek okulu programları. https://orgm.meb.gov.tr/www/ozel-egitim-meslek-okulu-programlari/icerik/2613
  • Yazıcı, K. U. (2020). Otizm spektrum bozukluğu tanılı olguların tipik gelişim gösteren kardeşlerinde depresif özellikler ve yaşam kalitesinin değerlendirilmesi: Tedavinin kardeşlerdeki bulgular üzerine etkisi. Fırat Tıp Dergisi, 25(1), 23-33.
  • Zablotsky, B., Bradshaw, C. P., & Stuart, E. A. (2013). The association between mental health, stress, and coping supports in mothers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(6), 1380-1393.
Toplam 73 adet kaynakça vardır.

Ayrıntılar

Birincil Dil Türkçe
Konular Otizm ve Spekrum Bozukluğu Eğitimi
Bölüm Makaleler
Yazarlar

Esra Orum Çattık 0000-0002-9080-3311

Yasemin Ergenekon 0000-0003-2443-0884

Yayımlanma Tarihi 22 Ağustos 2024
Gönderilme Tarihi 28 Şubat 2024
Kabul Tarihi 29 Nisan 2024
Yayımlandığı Sayı Yıl 2024

Kaynak Göster

APA Orum Çattık, E., & Ergenekon, Y. (2024). Öz-Belirleme ve Yaşam Kalitesi: Otizm Spektrum Bozukluğu Olan Genç Yetişkinler. Mersin Üniversitesi Eğitim Fakültesi Dergisi, 20(2), 148-162. https://doi.org/10.17860/mersinefd.1444166

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