Living with Autism: Parents of Adults with Autism Who Live In a Residential Home Tell Their Life Narratives

Background: Data is strikingly lacking regarding the coping process of parents of adults with autism (ASD).  As the number of children with autism continues to increase, so will the number of adults with the condition and the lifelong challenges parents will be facing.

Objectives: We explore the coping process of parents to adults with autism as seen through personal narratives, retrospectively and future-oriented  

Methods: The study involved 15 parents: nine mothers and five fathers. In-depth interviews were conducted with each one to extract qualitative data that could not otherwise be derived from experiments, questionnaires, or observations. The narratives were analyzed along two dimensions: a) Holistic vs. categorical, and b) Content vs. form.  The analysis defined three broad categories.  I: Temporal (perception of time, internally and externally).  II: Coping styles (A. emotions, B. actions, C. cognition, D. attitudes and moral values.)  III: Ecological ( reciprocal influence between parents and social circles). 

Results:

In general, results suggest that the basic and inherent attitude to life influenced the longitudinal coping process. The narratives revealed a uniformly painful experience which evolved and developed through a lifelong process as parents sought to find meaning in their situation.

Axis I: Most parents described seven “meaningful” periods: 'life before parenthood', 'baby comes to the world', 'time of anxiety', 'the diagnosis', 'early and late childhood’ , 'present time', 'the future'  Deepest concerns related to a future in which they won’t be around to care for their children. 

Axis II:  Coping styles evolved and followed a predictable developmental process: reacting emotionally to the new situation; facing the child’s special needs; regaining a sense of control through actions. These steps mirrored a cognitive evolution accompanied by change in their moral attitudes and re-defining the meaningfulness of their lives.

Axis III: Cultural and social constructs affected parental practice significantly. Mothers tended to accept the traditional role as the child's main caregiver, though many coped by engaging in private and public advocacy. Fathers also acted conventionally, but both parents showed the same interest and affection to the child. The mothers’ narratives made use of more affectionate language and ‘motherhood’ played a big role. The fathers used more factual language giving much more space to their career and outer world. 

The general societal attitude toward their child as 'the other' had a dominant effect on family and parental practices. The parents' ethnic origin and educational level were heterogenic and no significant differences were found based on socio-demographic data. The parents’ narratives were highly reflective of Israeli societal influences.

Conclusions: Exploring parents’ perspectives through their life narratives enables us to better understand complex developmental and social milestones in parents’ lives. The experience of Israeli parents is likely similar to what parents in other countries and cultures encounter. This study highlights the need to identify and adopt appropriate interventions to present and future needs of families. This segment of the population must not be "lost in the shuffle" and must not be ignored in data collection involving autism-related studies.