Growing up with a Sibling with Autism: Schemas and Motivation

For the past few weeks, I have been writing about culture as the context that shapes human development and learning.  The value of understanding cultural context is to become more aware of the layers that influence the behaviors and attitudes of both us and others.  Culture offers a lens for the larger question, “why do people do the things they do?’ 

D’Andrade (1992) explored how cultural learning translates into action through the concepts of schemas and motivation.  Schemas were described as “a conceptual structure which makes possible the identification of objects and events” (p. 28).   Schemas guide a person’s interpretation of events, past memories, and potential future actions.  Motivation is the desire to act on the future actions or goals.  “Cultural representations about how schemas should serve as goals…can combine together to create cultural schemas that motivate the individual with great power” (p. 38). 

My dissertation research was focused on young adult siblings of individuals with autism spectrum disorders (ASD).  I interviewed people between the ages of 18-25 that had a brother or a sister with ASD.  I was interested in exploring how their sibling relationship, a significant part of their context, shaped their transitions into adulthood.  I was also interested in how the siblings experienced any feelings of grief. 

Throughout the interviews, the siblings often commented on not feeling that neither their family nor their sibling experience were normal.  The concept of “normal” appeared to come from comparing their family experience to those they saw around them. One woman claimed, “we don’t do things like other families do.”   The concept of normal extended to their relationships with their brothers or sisters with ASD.  Another participant stated, “I feel like I have a sister, but I don’t feel she’s a traditional sister.”  The participants compared their sibling to their schema of siblings and sibling relationships that came from socially constructed idea of what brothers and sisters do.

All of the siblings in my dissertation spoke lovingly about their siblings.  They also talked about the sense of strength that came from their relationship with their brothers and sisters.  Culture shaped their definitions of sibling and family relationships.  The contrast between their schemas for sibling relationships and their own experience created feelings of loss and guided their future goals.  Growing up with a sibling with ASD shaped their career choices, peer selection, and mate selection. 

The goal of my research was not to suggest any valuation of the experience of growing up with a sibling with a disability.  We are all impacted by the people we grow up with.  Our perceptions of those experiences are also shaped by constructed schemas of what relationships “should” be.  Our behaviors are then guided by these relationships and beliefs.