Self-Determination and Quality of Life: Young Adults with Autism Spectrum Disorders

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.

Anahtar Kelimeler

• autism spectrum disorder
• quality of life
• self-determination
• independent life
• adulthood

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

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.

Anahtar Kelimeler

• Otizm spektrum bozukluğu
• yaşam kalitesi
• öz-belirleme
• bağımsız yaşam
• yetişkinlik

Kaynakça

1. 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
2. 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
3. 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
4. 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
5. 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
6. 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.
7. 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.
8. 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

9. Brolin, D. E. (1997). Life centered career education: A competency-based approach. Council for Exceptional Children, Reston: VA
10. 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
11. 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
12. Caouette, M., Lachapelle, Y., Moreau, J., & Lussier‐Desrochers, D. (2018). Descriptive study of caseworkers’ practices to support the development of self‐determination of adults with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 15(1), 4-11. https://doi.org/10.1111/jppi.12217
13. Carlile, K. A., Reeve, S. A., Reeve, K. F., & DeBar, R. M. (2013). Using activity schedules on the iPod touch to teach leisure skills to children with autism. Education and Treatment of Children, 36(2), 33-57. https://www.jstor.org/stable/42900199
14. Carter, E. W., Lane, K. L., Pierson, M. R., & Stang, K. K. (2008). Promoting self-determination for transition-age youth: Views of high school general and special educators. Exceptional Children, 75(1), 55-70. https://doi.org/10.1177/001440290807500103
15. Chambers, C. R., Wehmeyer, M. L., Saito, Y., Lida, K. M., Lee, Y., & Singh, V. (2007). Self-determination: What do we know? Where do we go? Exceptionality, 15(1), 3-15. https://doi.org/10.1080/09362830709336922
16. Cheak-Zamora, N. C., Teti, M., Maurer-Batjer, A., O’Connor, K. V., & Randolph, J. K. (2019). Sexual and relationship interest, knowledge, and experiences among adolescents and young adults with autism spectrum disorder. Archives of Sexual Behavior, 48(8), 2605-2615. https://doi.org/10.1007/s10508-019-1445-2
17. Chou, Y. C. (2020). Navigation of social engagement (NOSE) project: Using a self-directed problem-solving model to enhance social problem-solving and self-determination in youth with autism spectrum disorders. Education and Training in Autism and Developmental Disabilities, 55(1), 101-114. https://www.jstor.org/stable/26898717
18. Chao, P. C., Chou, Y. C., & Cheng, S. F. (2019). Self-determination and transition outcomes of youth with disabilities: Findings from the special needs education longitudinal study. Advances in Neurodevelopmental Disorders, 2019(3), 129-137. https://doi.org/10.1007/s41252-019-00105-1
19. Correale, C., Borgi, M., Cirulli, F., Laghi, F., Trimarco, B., Ferraro, M., & Venerosi, A. (2022). The impact of health and social services on the quality of life in families of adults with autism spectrum disorder (ASD): A focus group study. Brain Sciences, 12(2), 177-189. https://doi.org/10.3390/brainsci12020177
20. Deci, E. L. (1975). Intrinsic motivation. Oxford Press.
21. Deci, E. L., & Ryan, R. M. (2016). Optimizing students’ motivation in the era of testing and pressure: A self-determination theory perspective. In W. Chia Liu, J. C. Keng Wang, & R. M. Ryan (Eds.), Building autonomous learners: Perspectives from research and practice using self-determination theory (pp. 9-29). Singapore: Springer.
22. Deci, E. L., & Ryan, R. M. (2002). Overview of self-determination theory: An organismic dialectical perspective. In E. L. Deci & M. R. Ryan (Eds.), Handbook of self-determination research (pp. 3-33). Rochester Press.
23. DePape, A. M., & Lindsay, S. (2016). Lived experiences from the perspective of individuals with autism spectrum disorder: A qualitative meta-synthesis. Focus on Autism and Other Developmental Disabilities, 31(1), 60-71. https://doi.org/10.1177/108835761558750
24. Doll, B., Sands, D., Wehmeyer, M. L., & Palmer, S. (1996). Promoting the development and acquisition of self-determined behavior: Self-determination across the life span. Independence and Choice for People with Disabilities, 14(3), 65-90. https://doi.org/10.1037/0003-066X.55.1.34
25. Farid, R. F., Indianti, W., & Singgih, E. E. (2020). The effectiveness of self-determination learning model of instruction in improving social problem-solving skills on slow-learner students. Jurnal Psikologi Malahayati, 2(1), 1-14. https://doi.org/10.33024/jpm.v2i1.2422
26. Griffin, M. M., McMillan, E. D., & Hodapp, R. M. (2010). Family perspectives on post-secondary education for students with intellectual disabilities. Education and Training in Autism and Developmental Disabilities, 45(3), 339-346. https://www.jstor.org/stable/23880108
27. Griffiths, S., Allison, C., Kenny, R., Holt, R., Smith, P., & Baron‐Cohen, S. (2019). The Vulnerability Experiences Quotient (VEQ): A study of vulnerability, mental health and life satisfaction in autistic adults. Autism Research, 12(10), 1516-1528. https://doi.org/10.1002/aur.2162
28. Hendricks, D. (2010). Employment and adults with autism spectrum disorders: Challenges and strategies for success. Journal of Vocational Rehabilitation, 32(2), 125-134. https://doi.org/10.3233/JVR-2010-0502
29. Hendricks, D. R., & Wehman, P. (2009). Transition from school to adulthood for youth with autism spectrum disorders: Review and recommendations. Focus on Autism and Other Developmental Disabilities, 24(2), 77-88. https://doi.org/10.1177/1088357608329827
30. Kellems, R. O., & Morningstar, M. E. (2012). Using video modeling delivered through iPods to teach vocational tasks to young adults with autism spectrum disorders. Career Development and Transition for Exceptional Individuals, 35(3), 155-167. https://doi.org/10.1177/0885728812443082
31. Kellems, R. O., Yakubova, G., Morris, J. R., Wheatley, A., & Chen, B. B. (2022). Using augmented and virtual reality to improve social, vocational, and academic outcomes of students with autism and other developmental disabilities. In M. Khosrow-Pour (Ed.), Research anthology on inclusive practices for educators and administrators in special education (pp. 737-756). IGI Global.
32. Kim, S. Y. (2019). The experiences of adults with autism spectrum disorder: Self-determination and quality of life. Research in Autism Spectrum Disorders, 60(2019), 1-15. https://doi.org/10.1016/j.rasd.2018.12.002
33. 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
34. 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
35. 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
36. 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
37. 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
38. 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]
39. 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
40. 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
41. 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.
42. McDonagh, J. E., Ambresin, A. E., Boisen, K. A., Fonseca, H., Kruse, P. J., Meynard, A., ... & Takeuchi, Y. L. (2018). The age of adolescence… and young adulthood. The Lancet Child & Adolescent Health, 2(4), 1-14. https://doi.org/10.1016/S2352-4642(18)30079-8
43. 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
44. 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
45. Nirje, B. (1972). Normalization: The principle of normalization. Newyork: Oxford Press.
46. 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
47. 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
48. 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
49. 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
50. 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
51. 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
52. Ryan, R. M., & Deci, E. L. (2017). Self-determination theory: Basic psychological needs in motivation, development, and wellness. Guilford Publications.
53. 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.
54. 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.
55. Shogren, K. A. (2017). Self-determination and transition planning, Baltimore: Paul Brookes Publication.
56. 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
57. 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
58. Shogren, K. A., Wehmeyer, M. L., Palmer, S. B., Rifenbark, G. G., & Little, T. D. (2015). Relationships between self-determination and postschool outcomes for youth with disabilities. The Journal of Special Education, 48(4), 256-267. https://doi.org/10.1177/0022466913489733
59. 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.
60. 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.
61. 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
62. Tomaszewski, B., Kraemer, B., Steinbrenner, J. R., Smith DaWalt, L., Hall, L. J., Hume, K., & Odom, S. (2020). Student, educator, and parent perspectives of self‐determination in high school students with autism spectrum disorder. Autism Research, 13(12), 2164-2176. https://doi.org/10.1002/aur.2337
63. 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
64. Ward, M. J., & Meyer, R. N. (1999). Self-determination for people with developmental disabilities and autism: Two self-advocates’ perspectives. Focus on Autism and Other Developmental Disabilities, 14(3), 133-139. https://doi.org/10.1177/108835769901400302
65. 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.
66. Wehmeyer M. L., Agran M., & Hughes, C. (1998) Teaching self-determination to students with disabilities: Basic skills for successful transition. Paul Brookes
67. 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
68. 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.
69. 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.
70. Wheeler, J. J., Mayton, M. R., & Carter, S. T. (2014). Methods for teaching students with autism spectrum disorders evidence-based practices. Pearson.
71. Milli Eğitim Bakanlığı (2024). Özel eğitim meslek okulu programları. https://orgm.meb.gov.tr/www/ozel-egitim-meslek-okulu-programlari/icerik/2613
72. 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.
73. 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.