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

Ou, Szu-Hsien
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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.
自閉症, 女性, 遲獲確診, 表現型, 生活經驗, 心理健康, autism spectrum disorder, female, late diagnosed, phenotype, experience, mental health