Roles and Experiences of Fathers of Children with Autism

Background: It is recognized that families tend to provide the majority of care for children and adolescents with autism.  However, what is not well understood is how family care unfolds over the course of development for children with autism and their families.  This gap is surprising given that (a) parents play a critical caregiving role, and (b) intervention programming for children with autism often takes place in the home. Addressing this gap is particularly important given that the well-being of parents is paramount if they are to be sustained in their crucial caregiving role. While another study by this team is examining maternal experiences, this study will examine the roles, tasks and experiences of fathers of children with autism and how couples negotiate care for the child.  With emerging literature that suggests one member of the family can integrally affect other family members, this study is crucial in understanding the impact of autism in family life.  Based on study findings, paternal and family-based supports and interventions can targeted to need and evaluated.

Objectives: To address these gaps, this study addresses the following research questions:

1. How do fathers perceive and experience autism in their children (up to age 25 years)?
   
2. How do fathers’ experience of autism change over time?
   
3. What are fathers’ roles in autism care, and what contributes to fathers’ wellbeing in the context of these roles?
   
4. How do mothers and fathers negotiate and give meaning to their children’s disorder and care?

Methods: The study will involve a theoretical sample of 20 fathers of a child with autism.  Fathers are participating in a single semi-structured interview.  Sample size permits variation in child age and diagnosis, cultural background, and family constellation. Sample selection is based on population databases of children (birth to 25 years) followed at the Autism Research Units at The Hospital for Sick Children, Toronto and the Glenrose Rehabilitation Hospital, Edmonton, both in Canada. 

Results: The presentation will address the following areas of study outcome:

• paternal roles and experiences associated with autism and how they change over time
  
• tasks that fathers fulfill in caring for their children with autism
  
• fathers’ perceptions of the challenges and blessings associated with childhood autism
  
• ways that fathers are supported/not supported
  
• supports that fathers would find helpful in managing their child’s care 
  
• ways that parents negotiate care, and ways that parents attribute meaning to their caregiving experience.

Conclusions: The study addresses an existing gap of knowledge and, as targeted resources are developed offering paternal support, practical benefits for fathers and families can result.  Based on the identification of paternal experiences and needs yielded in this study, it is anticipated that an ameliorative resource addressing these needs will be developed and tested in a future study within this research program.