早年完整評估自閉症個案成年後之追蹤研究

Abstract

前言：自閉症屬於一種神經心理發展障礙，大多數個案往往終其一生都有相當明顯的功能缺損。對於自閉症個案的長期結果可以針對各種不同層面來衡量，例如其教育成就、職業、社交友誼、獨立生活能力、整體社會結果、自閉症相關問題、認知及語言能力、生活品質等等。 目的及方法：本研究以一群自1986年起至1997年於台大醫院兒童心理衛生中心開設之自閉症特別門診，以前瞻性設計收集資料，經診斷確定為自閉症，而目前已成年之個案為研究對象，總共549名，早期評估資料包括個人基本資料 (性別、台大兒童心理衛生中心初診及自閉症特別門診評估之年齡、評估年代、父母教育程度)、心理行為特徵(學齡前兒童行為發展量表、兒童氣質量表、兒童活動量量表)、與自閉症症狀(克氏行為量表及自閉症評量表)。主要經由郵寄問卷追蹤，現在資料則包括其教育、職業、社交、生活獨立狀況、以及整體社會功能。經由統計分析上述資料，本研究對於此一族群有縱貫性的描述，並測試追蹤結果與早期評估資料之相關性。 結果：早期資料的跨年比較顯示隨著評估年代，愈晚期者初診年齡愈低、評估年齡愈高、母親教育程度愈高、自閉症症狀愈輕、心理發展商愈高。這些改變來自診斷概念與政府政策的進步，以及民眾與專業人員對自閉症障礙的認識瞭解增加。追蹤資料回覆者61名，男性52名（85.2％），平均年齡23.94 ± 3.12歲，結果顯示這些成人的整體社會功能不佳：能繼續就讀大專以上的有限（24.6％）；就業比例相當低，且多數為不穩定、非技術性、甚至僅屬庇護性質之工作；社交關係上，大多數沒有家庭以外的朋友（61.7％），也沒有人結婚或生育兒女；絕大多數部分獨立仍住在家裡（90.2％）。自評與家人評的功能程度為「差」及「極差」分別占35.3%及45.8 % ，而以客觀分數評定的整體社會功能評為「差」及「極差」的共占一半。早期資料對於追蹤資料的預測上，發現只有代表早期自閉症症狀的兩份量表分數是整體社會功能的最佳預測因子，其他項目皆未達到統計上顯著意義。 結論：由於收集時極為審慎且保存長久，忠實反應了台灣本土兒童精神醫療實務的蹤跡，也與國際同步見證了自閉症疾患相關概念的進展與趨勢，長期追蹤結果的資料則延續過去的努力成果，呈現自閉症患者在成年時的各方現況及需求，建議醫療社福單位應在家屬及治療相關專業人員配合下，在自閉症成年後的就業、社交、及生活功能各方面有充分及適當的政策及介入策略，以免早期療育及特殊教育之功無以之為繼。

Introduction: Autism is a kind of neurodevelopmental disorder, and most of its victims suffer from lifelong functional disabilities. Long-term outcomes of these cases may be measured through many dimensions, including their educational, occupational status, social function, independency, general social outcome, autism-related problems, cognitive or language abilities or quality of life. Objectives and methods: The sample of this study are autistic children previously comprehensively assessed at Children’s Mental Health Center of National Taiwan University Hospital from 1986 to 1997, who were older than 18 years of age as of 2010. The early data collected in their childhood included demographic and personal information (gender, ages at time of first visit and assessment, dates of the assessment, parental educational level), psychological and behavioral profiles (Temperament and Activity Scales, Chinese Childhood Developmental Inventory), and autistic symptoms (Clancy Behavioral Rating Scale and Childhood Autism Rating Scale). Current status of these participants regarding education, occupation, independency, social function and general social outcome was followed up on. Results: For the early data during the years of the study period, we observed trends in decreasing age at first visit, increasing age at assessment, rising maternal educational level, lessening autistic disorder symptomatology, and increasing developmental quotients. These changes may have been due to improved diagnostic criteria, government policy, and healthcare professionals’ and parents’ increased awareness of autistic disorder. Follow-up data revealed these participants’ social outcome was poor. Only 24.6% of the participants went to college and above. 36.1% of the participants had work experience, but most jobs were unstable, non-skilled, supervised, and sheltered. Regarding social relationships, 61.7% of the participants had no friends outside of the family, and none had been married or had children. Most (90.2%) lived with their parents with partial independence. At subjectively rated functional levels, 35.3% and 45.8 % of the participants were rated as “poor” and “very poor” by self and family, respectively. Half of the participants’ social outcome was rated as “poor” and “very poor” (49.2 %) according to the objective rating. Autistic symptomatology in childhood predicts outcome most strongly. Overall adult outcome was significantly correlated with ages of first visit and assessment, the scores of CARS, CBRS, and expressive language, conceptual comprehension, self help, and general development of CCDI. Multiple regression indicated that CARS was the strongest predictor of outcome, followed by the score of CBRS. Conclusion: Our study reveals the enormous needs of adults with autism and families in Taiwan. Lack of adequate occupational and social intervention and support after special education in the schools, accompanied with an increasing population of autism diagnosed in the society, indicates many more missions remained in the future. If comprehensive treatment programs for the population with autism extend from early childhood to late adulthood, children currently growing up with autism will enjoy a brighter future.