協商理想親職：自閉症孩童家長的敘事與實作

Abstract

近年來，台灣自閉症患者人數不斷攀升，自閉症也逐漸引起社會大眾的廣泛關注，但關於台灣自閉症家庭病痛經驗的研究仍然相當缺乏。本研究以理想親職、醫療化與敘事分析的取徑，探討台灣自閉症孩童家長的親職敘事與實作：第一，家長如何發現孩子有自閉症，社會中關於兒童成長的觀點與親職敘事如何影響確診過程？第二，家長如何詮釋自閉症疾病意義與親職角色，醫療論述與父母敘事的關係為何？第三，家長如何進行自閉症孩童的親職實作？家長親職敘事與親職實作之關連為何？ 經由深度訪談十七個自閉症孩童家庭家長，以及分析家長網路討論區貼文與出版書籍等資料，本研究提出「（擬）病因（genesis）敘事」與「預後（prognosis）敘事」的概念探討自閉症孩童家長的敘事與實作。在「（擬）病因敘事」方面，台灣社會文化中常民的「自然成長論」與「病態親職論」傾向將孩子的發展解釋為「正常」，阻礙父母帶孩子求診的行動，或將孩子的異常解釋為父母的失職；醫療專業者的確診宣判孩子是「異常」的自閉症孩童，有效反駁上述常民敘事，自閉症「醫療疾病論」所支持的「（父系）遺傳」說法更能使家長擺脫教養使孩子致病的失職污名。 確診事件使父母敘事發生重大轉折，使父母無法再依循一般教養益品，轉而受到「自閉症理想親職」的束縛，盡力改善孩子的「預後」發展。父母依循醫療觀點發展「積極療育論」，但父母為了宣稱孩子價值、回應自閉症污名，也發展出反對純粹醫療觀點的「自閉文化論」、「自閉光譜論」與「障礙建構論」三種「社群反敘事」。雖然父母有多元的自閉症預後敘事，但理想自閉症孩童親職實作只有單一標準。「積極療育論」是引導親職實作的主流敘事，督促父母進行協助孩子「克服核心障礙」的親職實作，社群反敘事中「自閉文化論」指引的「發展優勢能力」僅是親職實作的次要目標。 在親職實作上，由於自閉症核心症狀為社交互動困難與固著，且自閉症孩童的個體差異極大，為了協助孩子克服障礙，理想的自閉症孩童家長除了要連結醫療系統的資源，更要成為孩子個人化的全方位治療師，建立與孩子的溝通橋樑，並協助孩子適當融入社會情境。然而，此種密集親職的標準甚高，造成許多父母陷入失職焦慮，亦擴大自閉症孩童家庭性別與階級的不平等現象。 由於自閉症「不易辨別」、「難以確立」與「可能進步」的「疾病界線模糊」特質，自閉症孩童父母更容易招致常民（擬）病因敘事的質疑與指責，因而更須仰賴醫療權威論述來反駁常民敘事；此外，家長有更多資源能發展自閉症社群反敘事，但理想親職實作的標準亦更高。 簡言之，本研究指出自閉症孩童家庭的病痛經驗與父母親職困境，分析自閉症理想親職的特質、探討醫療化對親職的影響、說明親職敘事與實作的動態關係，並依據本研究的發現提出政策建議。

The incidence of autism has been increasing rapidly in Taiwan, and this has raised a wide public concern. However, less attention has been paid to the illness experience of families with autistic children. With the concept of “ideal parenthood,” the theory of medicalization and narrative analysis, this paper investigates the narratives and practice of the parents of autistic children in Taiwan. The research questions are as follows: (1) How do the parents find out that their children have autism? How does the prevalent society’s viewpoint on children’s growth and parenting narratives affect the process of medical consultation and diagnosis? (2) How do parents interpret the meaning of autism and their roles as parents? What is the relationship between medical discourse and parents’ narratives? (3) How do parents do their parenting practice for autistic children? How do parenting narratives and parenting practice interact with each other? Based on in-depth interviews with 17 parents of autistic children, analysis of postings on parents’ online forums and published books by parents, this paper uses the concepts of “(quasi-) genesis narrative” and “prognosis narrative” to illustrate the parenting narratives and practice of parents of autistic children. In the (quasi-) genesis narrative, the folk’s narratives of “natural growth” and “abnormal parenting” interpret the children as “normal,” preventing the parents from seeking medical consultation or blaming the parents for children’s inappropriate behaviors. The medical professionals’ diagnosis confirms the children as autistic and helps the parents disprove folk narratives. Moreover, medical discourse suggests that (paternal) inherence may be one causal factor leading to autism, which defends the parents against “the stigma of being a bad parent.” Diagnosis makes parents unable to pursue general parenting “goods.” The parents turn to accept the standard of the “ideal parenthood of autism,” trying their best to improve the children’s prognosis. The parents follow medical instructions and develop an “active intervention narrative;” however, in order to claim the value of autistic children and respond to the stigma of autism, the parents also create three kinds of counter-narrative: the “autistic culture narrative,” the “autistic spectrum narrative” and the narrative of the “social construction of disability.” Although the parents develop multiple prognosis narratives of autism, there is only one standard of ideal parenting practice. In other words, “active intervention narrative” is the most dominant narrative leading the parents’ practice, and it encourages parents to help children conquer the disability of autism. Developing the children’ strength, which is led by the “autistic culture narrative,” is only a secondary goal of parents. Ideally, parents of autistic children should engage in intensive parenting to help their children overcome the disability. Due to the complexity in the symptoms of autism and individual differences among autistic children, the parents must “articulate” with medical professionals and they should also be the children’s personal and versatile therapists, striving to enter into the children’s world and help the children integrate into society. The standard of intensive parenthood is so high that it makes parents feel guilty, and it also widens the inequality of gender and class in autistic families. Autism is a disorder that is “difficult to distinguish,” “hard to establish” but “possible to improve.” The characteristic of autism, namely that of the “blurred boundary,” makes the parents more likely to be questioned and criticized by the folk’s (quasi-) genesis narrative, rely more on medical discourse against the folk’s narrative, and have more resources to develop the counter-narratives. Furthermore, the standard of ideal autistic parenting is higher due to these characteristics. In conclusion, this paper describes the illness experience of families with autistic children, analyzing the content of autistic children’s parenthood, the effect of medicalization on parenthood and the dynamic interaction between parents’ narratives and practice. Implications of the policy are also addressed.