Negotiating Ideal Parenthood: The Narratives and Practice of Autistic Children’s Parents
Date Issued
2016
Date
2016
Author(s)
Lu, I-Ting
Abstract
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.
Subjects
autism
parents’ narratives
parents’ practice
ideal parenthood
medicalization
Type
thesis
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