研究生: |
歐思賢 Ou, Szu-Hsien |
---|---|
論文名稱: |
遲獲確診輕度自閉症女學生學校生活經驗之探究 The exploration about the school experience of the females late diagnosed with Autism Spectrum Disorder |
指導教授: |
張正芬
Chang, Cheng-Fen |
口試委員: | 劉萌容 姜義村 張正芬 |
口試日期: | 2021/09/23 |
學位類別: |
碩士 Master |
系所名稱: |
特殊教育學系 Department of Special Education |
論文出版年: | 2021 |
畢業學年度: | 110 |
語文別: | 中文 |
論文頁數: | 274 |
中文關鍵詞: | 自閉症 、女性 、遲獲確診 、表現型 、生活經驗 、心理健康 |
英文關鍵詞: | autism spectrum disorder, female, late diagnosed, phenotype, experience, mental health |
研究方法: | 現象學 、 紮根理論法 、 半結構式訪談法 |
DOI URL: | http://doi.org/10.6345/NTNU202101622 |
論文種類: | 學術論文 |
相關次數: | 點閱:349 下載:0 |
分享至: |
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目前國內文獻或政府公開資料中,自閉症女性出現率與其他國家有極大落差,突顯我國醫療診斷和教育評估系統可能存在的不足。當前國外研究顯示遲獲診斷的自閉症女性在確診前,常歷經一連串壓力情境並獨自面對處理。為釐清她們在兒童時期適應困難未被辨識的原因,有必要從生活經驗中,透過其觀點瞭解女性在自閉症特徵上微妙的表現型(phenotype)。本研究旨在探索高中後首次確診為自閉症的女性,瞭解其從小到大在學校生活中所歷經的挑戰、未被發現的需求、尋求幫助的歷程,以及醫療診斷、特殊教育鑑定的意義與影響。研究設計採立意取樣,招募9位研究參與者,包含3位自閉症女性、主要照顧者與高中階段熟識教師各1位。參與者知情同意後,透過半結構式訪談與相關文件資料,以俗民方法論(ethnomethodological approaches)及紮根理論(grounded theory)進行研究資料分析。研究結果刻劃三位遲獲確診輕度自閉症女性與周遭環境互動之成長歷程,顯示出她們從小優異的認知能力與自閉症特質樣貌。結論指出三位女性共同經歷隱身、屏蔽、負荷、急墜與起伏五個狀態,諸多因素致使她們在前三個狀態時,自閉症特質或適應困難未能及時被辨識出來,終致跌入急墜狀態;待確診、穩定接受醫療處遇與特殊教育服務介入後,她們才逐漸進入起伏狀態。此外,她們在「非語言溝通困難」及「刻板、重複的舉動或言語」的表現,出現在更早期或更隱微而不易被察覺;基於融入同儕動機讓她們也有長期的友誼;這些有別於以往對於自閉症男性的樣貌,可能讓她們的自閉症特質更難被注意到。再者,三位輕度自閉症女性心理健康的急墜,與她們三種清楚的知覺有關:睡眠問題惡化、失真實感與自我概念貶損;而與之息息相關的三角系統──學校、家庭和心理專業人員──在面對三位女性的適應困難時,彼此採取的行動扮演著至關重要的角色;家長態度與優異能力可能致使輕度自閉症女性適應困難不被辨識;經歷長期偽裝後,對她們來說最重要的是感受自身觀點被理解。最後,確診自閉症讓她們認識更完整的自己,而遲獲診斷的風險包括與共病交織的複雜性,錯失特殊教育早期介入,建構牢不可破的信念好壞難料;另一個角度則是發現自閉症女性更多元的樣貌。最後討論研究對象與研究方法的限制,擴論本研究發現應謹慎看待;也提出對實務工作與未來研究的建議。
According to some literature or some papers from government for example, the prevalence of Autism Spectrum Disorder (ASD) in females is significantly lower in Taiwan than in other countries, which indicates that the system of medical diagnosis and educational assessments is inadequate. Previous studies have showed that many females had to cope with a series of stressful situations before late ASD diagnosis. To clarify why females with ASD weren’t identified in childhood, understanding the female’s subtle phenotype of ASD traits through their perspectives on their living experience would be essential.
The current study aimed to explore the school experience of females who were late diagnosed with Autism Spectrum Disorder (ASD) after entering high school, including their challenges, unseen needs, help-seeking process, as well as the meaning and effects of the identification on their lives. Purposive sampling was conducted in the qualitative designed study, and the participants(N=9), including three females with ASD, their caregivers and high school teachers, were all informed about the all aspects of the study. Semi-structured interviews and documents were analyzed with ethnomethodological approaches and grounded theory. The results were depicted by stories of the three ASD females’ experience and interactions with the environment in order to reveal their excellent intelligence, phenotypes. Findings indicated that the late-diagnosed females (1)would experience five conditions: “Hidden”, “Shielding”, “Burdened”, “Falling” and “Undulated”; (2) might hardly meet the diagnostic criteria of “deficits in nonverbal communicative behaviors” and “stereotyped or repetitive motor movements”, and their social difficulties were ignored because of their motivation in building friendships in peers; and (3) had insomnia, felt they were not their true selves and faced the challenges to their self-concept while having mental health problems resulted from the interaction between school staffs, family and the mental health workers. The diagnosis of ASD brought these females a better recognition of themselves; however, the late diagnosis may cause them to run the risk of facing comorbidity, missing early intervention, or building fixed beliefs. Finally, the limitation of the study and suggestions for the practices and future studies were discussed.
1. 于曉平(2018):自閉症學生的心智理論與教學。載於王欣宜主編:自閉症學生的教育輔導:理論與實務(181-228頁)。臺北:心理。
2. 于曉平(2018):自閉症學生的鑑定與診斷。載於王欣宜主編:自閉症學生的教育輔導:理論與實務(39-72頁)。臺北:心理。
3. 方永泉(2000):符號互動論(symbolic Interactionism)。國家教育研究院雙語詞彙、學術名詞暨辭書資訊網。https://terms.naer.edu.tw/detail/1310670/
4. 宋維村(2013):DSM-5自閉症最新診斷準則及其影響。健康世界,334,16-22。
5. 李芳森(2005):教育社會學。新北市:群英。
6. 吳心楷、辛靜婷(2011):數位學習研究中質性資料的管理與分析:以NVivo 軟體的使用為例。載於宋曜廷主編:數位學習研究方法。臺北:高等教育。
7. 周月清、張家寧、呂思嫺(2017):身心「障礙」與「性別」統計跨國比較:CEDAW暨CRPD檢視觀點。載於黃淑玲主編:性別主流化:臺灣經驗與國際比較,67-107。臺北市,五南。
8. 邱大昕(2012):為什麼需要女性主義身心障礙研究?。婦女縱橫,96,16-24。臺灣大學婦女研究室。
9. 邱芳妤(2016):大專校院自閉症學師學校適應之研究(未出版)。國立臺灣師範大學特殊教育學系碩士論文,臺北。
10. 姜義村(2011):「不想成為班上的小白兔!」:以符號詮釋自閉症學童在融合教育中友誼建立之挑戰。特殊教育研究學刊,36(3),87-114。
11. 洪森豐、吳柱龍(2018):泛自閉症學生之認識。載於王欣宜主編:自閉症學生的教育輔導:理論與實務,1-38。臺北;心理。
12. 胡幼慧、姚美華(1996):一些質性方法上的思考。載於胡幼慧編:質性研究:理論、方法及本土女性研究實例,141-157。台北:巨流。
13. 國科會(2011):教育學門保護研究對象倫理信條。
14. 曾亜妮(2017):如她(未出版)。國立臺灣師範大學特殊教育學系碩士論文,臺北。
15. 陳劍涵(譯)(2017):質性研究設計 : 互動取向的方法(J. A. Maxwell著:Qualitative research design : an interactive approach, 3rd ed.)。新北:心理。
16. 陳豐偉(2018):我與世界格格不入─成人的亞斯覺醒。新北,遠足文化。
17. 程巍 (譯)(2012):疾病的隱喻。(Susan Sontag著:Illness as Metaphor and AIDS and Its Metaphors)。臺北:麥田出版。
18. 鈕文英(2013):美國精神醫學協會《心理異常診斷與統計手冊》第五版之修訂內涵。中華民國特殊教育學會年刊,2013,1-14。
19. 張正芬(1996):自閉症診斷標的演變。特殊教育季刊,59,1-9。
20. 張正芬、吳佑佑(2006):亞斯柏格症與高功能自閉症早期發展與目前症狀之初探。特殊教育研究學刊,31,139-164。http://dx.doi.org/10.6172/BSE200609.3101007
21. 張正芬主編(2014):自閉症學生鑑定辦法說明。載於張正芬主編:身心障礙及資賦優異學生鑑定辦法說明手冊(12-1~12-26頁)。教育部。
22. 楊孟麗、謝水南(譯)(2016):質性研究方法導論。載於:教育研究法─研究設計實務(第二版)(562-564頁)(Fraenkel, J., Wallen, N., & Hyun, H.著:How to Design and Evaluate Research in Education, 8th ed.)。臺北:心理。
23. 黃浥暐(2018):從DSM看自閉症診斷標準演變史。月旦醫事法網─醫事技術。取自http://www.angle.com.tw/ahlr/discovery/post.aspx?ipost=2817#note0
24. 鄒長志(譯)(2018): 神經發展障礙症。載於曾念生監修:DSM-5精神疾病診斷與統計(第五版)(American Psychiatric Association著:Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition)。臺北,合記圖書。
25. 潘淑滿(2017):質性研究:理論與應用。臺北,心理。
26. 衛福部統計處(2020):身心障礙者人數按季(2020年,第二季)。
27. 劉萌容(2008):自閉症光譜量表─Autism-Spectrum Quotient中文成人版之預測效度及相關因素分析。特殊教育研究學刊,33(1),73-92。
28. 賴孟泉、高淑芬(2010):自閉症類群。臺灣醫學,14(4),401-411。
29. 蕭雁文、趙家琛(2017):一位輕症自閉症女性成人的同理心經驗與觀點。中華心理衛生學刊,30(2),169-194。
30. 蕭瑞麟(2017):不用數字的研究:質性研究的思辯脈絡=Research without numbers(三版)。臺北:五南。
31. Baldwin, S. & Costley, D. (2016). The experiences and needs of female adults with high-functioning autism spectrum disorder. Autism : the international journal of research and practice, 20(4), 20 (4), 483-495. https://doi.org/10.1177/1362361315590805
32. Bargiela, S., Steward, R. & Mandy, W. (2016). The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype. Journal of Autism Development Disorders, 46, 3281–3294. https://doi.org/10.1007/s10803-016-2872-8
33. Baron-Cohen, S. (2002). The extreme male brain theory of autism. Trends in cognitive sciences, 6(6), 248-254. https://doi.org/10.1016/s1364-6613(02)01904-6
34. Baron-Cohen, S., Auyeung, B., Ashwin, E., Knickmeyer, R., Lombardo, M. & Chakrabarti, B. (2011). The Extreme Male Brain Theory of Autism: The Role of Fetal Androgens. In D. Amaral, D. Geschwind, & G. Dawson (Eds.), Autism Spectrum Disorders(pp.991-997). Oxford, England: Oxford University. https://doi.org/10.1093/med/9780195371826.003.0062
35. Beck, J. S., Lundwall, R. A., Gabrielsen, T., Cox, J. C., & South, M. (2020). Looking Good but Feeling Bad: “Camouflaging” Behaviors and Mental Health in Women with Autistic Traits. Autism: The International Journal of Research and Practice, 24(4), 809–821.
36. Begeer, S., Mandell, D., Wijnker-Holmes, B., Venderbosch, S., Rem, D., Stekelenburg, F., & Koot, H. M. (2013). Sex differences in the timing of identification among children and adults with autism spectrum disorders. Journal of Autism and Developmental Disorders,43(5), 1151-1156. https://doi.org/10.1007/s10803-012-1656-z
37. Chiarotti, F. & Venerosi, A. (2020). Epidemiology of Autism Spectrum Disorders: A Review of Worldwide Prevalence Estimates Since 2014. Brain Science, 10(5), 274-294. https://doi.org/10.3390/brainsci10050274
38. Cridland, E. K., Jones, S. C., Caputi, P., & Magee, C. A. (2014). Being a girl in a boys’ world: investigating the experiences of girls with autism spectrum disorders during adolescence. Journal of Autism and Developmental Disorders, 44, 1261-1274. https://doi.org/10.1007/s10803-013-1985-6
39. Dworzynski, K., Ronald, A., Bolton, P., & Happé, F. (2012). How Different Are Girls and Boys Above and Below the Diagnostic Threshold for Autism Spectrum Disorders? Journal of the American Academy of Child & Adolescent Psychiatry, 51(8), 788–797. https://doi.org/10.1016/j.jaac.2012.05.018
40. Fusch, P. I.,& Ness, L. R.(2015): Are we there yet? Data Saturation in qualitative research. The Qualitative Report, 20(9), 1408-1416. Retrieved from https://www.proquest.com/docview/1721368991?accountid=14228.
41. Gould, J. & Ashton-Smith, J. (2011). Missed diagnosis or misdiagnosis: Girls and women on the autism spectrum. Good Autism Practice, 12(1), 34–41.
42. Happé, F. & Frith, U. (2006). The weak coherence account: Detail focused cognitive style in autism spectrum disorders. Journal of Autism and Developmental Disorders, 36(1), 5–25.
43. Head, A. M., McGillivray, J. A., & Stokes, M. A. (2014). Gender differences in emotionality and sociability in children with autism spectrum disorders. Molecular Autism, 5(19), 2-9. https://doi.org/10.1186/2040-2392-5-19
44. Hill, A. P., Zuckerman, K. E., & Fombonne, E. (2014) Epidemiology of Autism Spectrum Disorders. In F. R. Volkmar, S. J. Rogers, R. Paul, & K. A. Pelphrey(Eds.), Handbook of Autism and Pervasive Developmental Disorders(4th ed.), 1, 57-96.
45. Hsiao, M.-N., Tseng, W.-L., Huang, H.-Y., & Gau, S. S.-F. (2013). Effects of autistic traits on social and school adjustment in children and adolescents: The moderating roles of age and gender. Research in Developmental Disabilities, 34(1), 254–265. https://doi.org/10.1016/j.ridd.2012.08.001
46. Hull, L., Petrides, K., Allison, C., Smith, P., Baron-Cohen, S., Lai, M.-C., & Mandy, W. (2017). “Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions. Journal of Autism and Developmental Disorders, 47(8), 2519–2534. https://doi.org/10.1007/s10803-017-3166-5
47. Keenan, E. G., Gotham, K., & Lerner, M. D. (2018). Hooked on a feeling: Repetitive cognition and internalizing symptomatology in relation to autism spectrum symptomatology. Autism : The International Journal of Research and Practice, 22(7), 814–824. https://doi.org/10.1177/1362361317709603
48. Kirkovski, M., Enticott, P. G., & Fitzgerald, P. B. (2013). A review of the role of female gender in autism spectrum disorders. Journal of Autism and Developmental Disorders,11, 2584-2063. https://doi.org/10.1007/s10803-013-1811-1
49. Kristensen, Z, E. & Broome, M. R. (2015). Autistic Traits in an Internet Sample of Gender Variant UK Adults, International Journal of Transgenderism, 16(4), 234-245, https://doi.org/10.1080/15532739.2015.1094436
50. Kopp, S., & Gillberg, C. (2011). The Autism Spectrum Screening Questionnaire (ASSQ)-Revised Extended Version (ASSQ-REV): An instrument for better capturing the autism phenotype in girls? A preliminary study involving 191 clinical cases and community controls. Research in Developmental Disabilities, 32(6), 2875–2888. https://doi.org/10.1016/j.ridd.2011.05.017
51. Lai, M.-C., Lombardo, M. V., Pasco, G., Ruigrok, A. N. V., Wheelwright, S. J., Sadek, S. A., Chakrabarti, B., MRC AIMS Consortium, M. A., & Baron-Cohen, S. (2011). A Behavioral Comparison of Male and Female Adults with High Functioning Autism Spectrum Conditions. PLoS ONE, 6(6), e20835. https://doi.org/10.1371/journal.pone.0020835
52. Lai, M.-C., Lombardo, M. V., Auyeung, B., Chakrabarti, B., & Baron-Cohen, S. (2015). Sex/Gender Differences and Autism: Setting the Scene for Future Research. Journal of the American Academy of Child & Adolescent Psychiatry, 54(1), 11-24. https://doi.org/10.1016/j.jaac.2014.10.003
53. Lai, M-C., Lombardo, M. V., Ruigrok, A.N.V., Chakrabarti ,B., Wheelwright, S. J., Auyeung, B., Allison, C., MRC AIMS Consortium, & Baron-Cohen, S. (2012). Cognition in males and females with autism: similarities and differences. PLoS ONE, 7(10), e47198. https://doi.org/10.1371/journal.pone.0047198
54. Leedham, A., Thompson, A. R., Freeth M., & Smith, R(2020). 'I was exhausted trying to figure it out’: The experiences of females receiving an autism diagnosis in middle to late adulthood. Autism, 24(1), 135-146. https://doi.org/10.1177/1362361319853442
55. Lehnhardt, F.-G., Falter, C. M., Gawronski, A., Pfeiffer, K., Tepest, R., Franklin, J.,& Vogeley, K. (2016). Sex-Related Cognitive Profile in Autism Spectrum Disorders Diagnosed Late in Life: Implications for the Female Autistic Phenotype. Journal of Autism & Developmental Disorders, 46(1), 139–154. https://doi.org/10.1007/s10803-015-2558-7
56. Loomes, R., Hull L., & Mandy, W. P. L. (2017). What is the Male-to-Female Ratio in Autism Spectrum Disorder? A Systematic Review and Meta-Analysis. Journal of the American Academy of Child & Adolescent Psychiatry, 56(6), 466–474. https://doi.org/10.1016/j.jaac.2017.03.013
57. Lloyd, M. (2001). The Politics of Disability and Feminism: Discord or Synthesis? Sociology, 35(3), 715–728. https://doi.org/10.1017/S0038038501000360
58. Mademtzi, M., Singh, P., Shic, F., & Koenig, K. (2018). Challenges of Females with Autism: A Parental Perspective. Journal of Autism & Developmental Disorders, 48(4), 1301–1310. https://doi.org/10.1007/s10803-017-3341-8
59. Matsuyoshi, D., Kuraguchi, K., Tanaka, Y., Uchida, S., Ashida, H., & Watanabe, K. (2014). Individual differences in autistic traits predict the perception of direct gaze for males, but not for females. Molecular autism, 5(1), 12. https://doi.org/10.1186/2040-2392-5-12
60. Mertens, D. M. (2015). Research and evaluation in education and psychology: Integrating diversity with quantitative, qualitative, and mixed methods(4th ed.). Sage.
61. Myles, O., Boyle, C., & Richards, A. (2019). The social experiences and sense of belonging in adolescent females with Autism in mainstream school. Educational and Child Psychology, 36, 8-21.
62. Nichols, S., Moravcik, G. M., & Tetenbaum, S. P. (2009). Girls growing up on the autism spectrum. : What parents and professionals should know about the pre-teen and teenage years. London: Jessica Kingsley.
63. Pecora L. A., Hancock, G. I., Mesibov G. B., Stokes, M. A. (2019). Characterising the Sexuality and Sexual Experiences of Autistic Females. Journal of Autism and Developmental Disorders, 49, 4834–4846.
64. Pesonen, H. V., Kontu, E. K., & Pirttimaa, R. A. (2015). Sense of Belonging and Life Transitions for Two Females with Autism Spectrum Disorder in Finland. Journal of International Special Needs Education, 18(2), 73–86.
65. Ratto, A. B., Kenworthy, L., Yerys, B. E., Bascom, J., Wieckowski, A. T., White, S. W., Wallace, G. L., Pugliese, C., Schultz, R. T., Ollendick, T. H., Scarpa, A., Seese, S., Register-Brown, K., Martin, A., & Anthony, L. G. (2018). What About the Girls? Sex-Based Differences in Autistic Traits and Adaptive Skills. Journal of Autism & Developmental Disorders, 48(5), 1698–1711. https://doi.org/10.1007/s10803-017-3413-9
66. Rivet, T. T., & Matson, J. L. (2011). Review of gender differences in core symptomatology in autism spectrum disorders. Research in Autism Spectrum Disorders, 5(3), 957–976. https://doi.org/10.1016/j.rasd.2010.12.003
67. Robinson, E. B., Lichtenstein, P., Anckarsäter, H. 1966, Happe, F., & Ronald, A. (2013). Examining and interpreting the female protective effect against autistic behavior. Proceedings of the National Academy of Science of the United States of America, 110(13), 5258–5262. https://doi.org/10.1073/pnas.1211070110
68. Rynkiewicz, A., Schuller, B., Marchi, E., Piana, S., Camurri, A., Lassalle, A., & Baron-Cohen, S.(2016). An investigation of the “female camouflage effect” in autism using a computerized ADOS-2 and a test of sex/gender differences. Molecular Autism, 7(1). https://doi.org/10.1186/s13229-016-0073-0
69. Simon, R. (2010). Aspergirls: Empowering Females with Asperger. London: Jessica Kingsley.
70. Stroth S., Paye L., Kamp-Becker I., Wermter A-K., Krach S., Paulus, F.M., & Müller-Pinzler, L. (2019): Empathy in Females With Autism Spectrum Disorder. Front. Psychiatry, 10: 428. https://doi.org/10.3389/fpsyt.2019.00428
71. South, M., Beck, J. S., Lundwall, R., Christensen, M., Cutrer, E. A., Gabrielsen, T. P., Cox, J. C., & Lundwall, R. A. (2020). Unrelenting Depression and Suicidality in Women with Autistic Traits. Journal of Autism and Developmental Disorders, 50(10), 3606–3619.
72. Tierney, S., Burns, J., & Kilbey, E. (2016). Looking behind the mask: Social coping strategies of girls on the autistic spectrum. Research in Autism Spectrum Disorders, 23, 73–83. https://doi.org/10.1016/j.rasd.2015.11.013
73. Unruh, K. E., Bodfish, J. W., & Gotham, K. O. (2020). Adults with Autism and Adults with Depression Show Similar Attentional Biases to Social-Affective Images. Journal of Autism and Developmental Disorders, 50(7), 2336–2347. https://doi.org/10.1007/s10803-018-3627-5
74. Williams, Z. J., McKenney, E. E., & Gotham, K. O. (2021). Investigating the structure of trait rumination in autistic adults: A network analysis. Autism, 25(7), 2048–2063. https://doi.org/10.1177/13623613211012855
75. Wing, L. (1996). The autistic spectrum: A guide for parent and professionals. London, UK: Constable & Robinson Ltd.