臺灣學齡期自閉症類群障礙兒童的家庭及社區參與表現與成年時之變化

Abstract

背景與目的：自閉症類群障礙（簡稱自閉症）為社交溝通與互動障礙、具有侷限且重複的興趣及行為，其核心症狀常伴隨生活中參與活動的困難，過去研究發現國外自閉症兒童在參與家庭及社區活動，相較正常兒童呈現低程度的參與表現，並且進入成年階段後，研究顯示低於30%自閉症成人有受雇經驗，使其社會參與低落。然而臺灣目前較少有針對自閉症在家庭及社區參與之相關研究，因此探討自閉症兒童及青少年的參與，以及探索影響自閉症參與的身體問題與環境因素，並且追蹤自閉症青少年至成年階段的參與表現，有助於了解自閉症參與樣態以及青少年轉銜至成年階段的社會適應狀況。本研究應用臺灣身心障礙鑑定資料庫中，以身心障礙鑑定功能量表兒童版（Functioning Disability Evaluation Scale-Child，FUNDES-Child）及成人版（FUNDES-Adult）評估臺灣自閉症個案的資料，進行以下研究目的之分析：（1）探索6-17歲自閉症兒童及青少年在家庭與社區參與樣態，並比較6-12歲國小自閉症兒童及13-17歲國高中自閉症青少年在參與頻率及獨立程度之差異，以及追蹤自閉症兒童至青少年時期的參與變化；（2）檢驗與自閉症兒童及青少年參與頻率及獨立程度有關聯之身體功能問題與環境因素；（3）以自閉症青少年參與頻率及獨立程度預測其成年階段表現及生活情境能力的參與困難程度。方法：研究先以雷達圖呈現自閉症兒童組（N = 5190）及青少年組（N = 3603）各個參與樣態，並以獨立樣本t檢定比較兩組參與分數差異，以及使用成對樣本t檢定追蹤自閉症兒童至青少年時期的參與變化，再以逐步迴歸分析與參與分數有關聯之因素，再者，追蹤組（N = 678）是以青少年參與頻率及獨立程度，使用多類別邏輯迴歸分析，預測其成年階段表現及生活情境能力參與困難之勝算比。結果：研究結果發現自閉症兒童及青少年在參與頻率及獨立程度總分、以及多個參與面向分數呈現相似的參與樣態，兒童組相較青少年組在日常生活、移動、學習及社區參與頻率呈現較低落的參與頻率（all p’s < 0.0001），但是自閉症兒童於社會參與反而較自閉症青少年有較好的參與獨立程度（p < 0.0001）；在影響參與的因素中，以心智/語言損傷與自閉症兒童及青少年的參與有較高的相關性，而身體功能問題與環境因素皆能預測自閉症兒童及青少年的參與頻率及獨立程度；同時，在追蹤組的參與變化結果發現，若自閉症青少年參與頻率或獨立程度總分每增加一分，自閉症成人的表現及生活情境能力為中度及重度參與困難，相較正常或輕微參與困難的勝算比為1.04倍（p < 0.0001）。結論：6-12歲自閉症兒童的整體參與較13-17歲的自閉症青少年低落，但自閉症青少年特別在社會活動的參與獨立程度較差，代表其社會活動需要更多協助，並且研究發現自閉症兒童及青少年的心智及語言損傷，與其參與頻率及獨立程度接近高度相關，另外，當自閉症青少年參與分數提高，其成年階段有較高的勝算比會是中度或重度參與困難。此研究為第一個提供臺灣自閉症兒童與青少年家庭與社區參與的統計資料，以及幫助擬定青少年至成年階段轉銜計畫之參考。

Background and Objective: Patients with Autism Spectrum Disorder (ASD) experience communication and interaction difficulties and tend to repeatedly engage in the same hobbies and behaviors. The core symptoms of ASD include difficulties in participation. Studies worldwide have discovered that, compared with typically developing children, those with ASD demonstrate lower levels of participation when partaking in family and community activities. After entering adulthood, less than 30% of individuals with ASD have employment experiences, signifying the low social participation of this demographic group. Few research focus on the participation of patients with ASD in Taiwan. Therefore, exploring the participation of Taiwanese children with ASD in family and community activities facilitates further insight into these children and the potential physical and environmental factors affecting their participation. Moreover, continual monitoring of changes in the participation of patients with ASD in Taiwan while they transition from adolescence to adulthood enables an understanding of how adolescents adapt to society when they become adults. This study employed the data collected using the Functioning Disability Evaluation Scale-Child (FUNDES-child) and FUNDES-Adult from the Taiwan Data Bank of Persons with Disability to (1) examine the patterns of 6–17 years-old children and adolescents with ASD participating in family and community activities and compare the difference between the participation scores of 6–12 years-old students and 13–17 years-old students, and monitor of changes in the patients with ASD while they transition from childhood to adolescence ; (2) explore the bodily function and environmental factors associated with the participation of children and adolescents with ASD ; and (3) analyze difficulty of patients with ASD while they transition from adolescence to adulthood. Methods: The participation patterns of the child (N=5190) and adolescent (N=3603) groups in family and community activities were examined. An independent sample t-test was conducted to compare the participation scores of the two groups, followed by using paired t test to monitor of changes while they transition from childhood to adolescence. And stepwise regression to analyze the bodily function and environmental factors related to participation scores. Moreover, monitoring group (N=678) use multinominal logistic regression to examine difficulty of adult group during their transition from adolescence to adulthood. Results: The results discovered that, the child and adolescent groups demonstrated similar participation pattern in total scores of participation frequency and independence, and six domains. However, participation frequency of Daily living, Mobility, and School and Community activities of the child group was also lower than that of adolescents (p < 0.0001). The level of independence experienced by children when participating in social activity was higher than that of adolescents (p < 0.0001). In addition, Mental/Speech Impairment belong to body functions have higher correlations with participation frequency and involvement. The scores of participation frequency and independence was increased by 1 point in the adolescent stage, the odds ratio of being categorized as having moderate and severe participation difficulty in adulthood became 1.04 times (p < 0.0001) that of being categorized as having no or mild participation difficulty in adulthood. Conclusions: The study results revealed that participation frequency of the child group was lower than those of the adolescent group. However, adolescents with ASD experienced lower independence when participating in social activities, indicating that they needed assistance during such activities. Bodily function factors were observed to exhibit higher correlation. When adolescents experienced moderate or severe participation difficulty, their participation behavior in adulthood could be predicted, and they exhibited a high odds ratio to experience moderate and severe participation difficulty when becoming adults. This study was the first in Taiwan to examine the participation of children and adolescents with ASD. The study results can provide a reference for the families of patients with ASD to adjust their strategies for participating in family and community activities. The results also facilitate the devising of plans for adolescents with ASD to transition to adulthood.