Parenting Work and Trajectories of Care – How Parents Develop a Sense of Personhood and Future Possibilities for Children with Autism

Background:  

Caring for and loving a child with autism can be an emotional journey for parents due to the many ambiguities and uncertainties tied to the diagnosis and potential for long-term care. There is also a limited understanding of the causes and no clear consensus on the most effective treatments and developmental outcomes. In the face of these many unknowns, parents must proactively adjust to an alternative destination, lead by love and determination, as well as hope for themselves, their family, and their child’s future. 

Objectives:  

The purpose of this study is to investigate the ways in which parents rearticulate the meaning of autism to establish a sense of personhood for their child and possibilities for their future.

Methods:  

This study is based on in-depth interviews with parents who have a child diagnosed with autism in the U.S. Twenty-three families were interviewed from May 2009 – October 2012. Nineteen family interviews consisted of the mother only and four family interviews consisted of both the father and mother. The data was analyzed using grounded theory methods in order to develop and refine ideas based on responses to questions that addressed parents’ experiences of raising a child with autism and how they adjusted to limits place on their child and the uncertainties of the future.

Results:  

Parents conducted a range of biographical work in order to maintain a positive identity of their child who does not fit the normative expectations of our society. At the diagnostic phase, parents had to first resist the narrow boundaries of what to expect in a child with autism. They did this by creating a range of positive expectations and opportunities for their children to grow mentally and emotionally. Second, these parents challenged and shaped their child’s sense of personhood beyond the clinical diagnostic boundaries of autism by emphasizing various qualities and skills embodied by their child. As their children grew older, parents also described how they had to readjust their own expectations by focusing on ways to help their children be happy and able to care for themselves in the future.

Conclusions:  

The experiences of how parents manage the daily and life long expectations of their child with autism are important perspectives, especially as the number of children diagnosed with ASD continues to increase. In the U.S., there are limited services once children with autism reach adulthood, making the impact on parents and caregivers of people with autism an important health policy issue. The data presented in this study offers a glimpse of the invisible work conducted by parents who challenge and negotiate the limits placed on their child and the types of work they conduct to create futures that only they can imagine. Parents are integral to the daily life and futures of children with autism and this study begins to acknowledge how specialized and important this type of work is toward shaping autism trajectories.