Severe Childhood Autism: The Family Lived Experience

Gorlin, J.B. et al. Journal of Pediatric Nursing. Published online: October 6 2016

Highlights

  • Several themes were identified in families caring for a child with severe autism including: the families experienced autism as a mysterious and complex condition, they lived with severe autism-related behavior, and dealt with profound communication challenges, stress, and isolation.
  • Families reported developing compassion for others related to their experience of living with a child with severe autism.
  • Families formed ‘hybrid families’ to assist with raising the child with autism including nuclear and extended family members, and friends.

Abstract

This research examined the experiences of families living with a child with severe autism. There is limited literature on the experiences of families when a child has severe autism as distinct from milder autism and includes the voices of multiple family members.

Van Manen’s phenomenological approach was used for data collection and analysis. This approach allowed for the use of innovative data sources, including unstructured individual and family interviews, observations, and family lifelines (a pictorial, temporal picture with comments of the families lives).This study included 29 interviews with 22 participants from 11 families. All data were creatively triangulated and interpreted.

Six essential themes were identified. First, families experienced autism as mysterious and complex because it is an invisible and unpredictable condition with diagnostic challenges. Second, families described severe autism behaviors that often caused self-injury, harm to others and damaged homes. Third, profound communication deficits resulted in isolation between the family and child. Fourth, families discussed the unrelenting stress from lack of sleep, managing the child’s developmental delays, coordinating and financing services, and concern for the child’s future. Fifth, families described consequences of isolation from friends, school, the public, and health providers. Sixth, families portrayed their need for compassionate support and formed ‘hybrid families’ (nuclear, extended families and friends) to gain support.

Study results can be utilized to educate nurses/other providers about the unique needs of families with children with severe autism and could influence health care policies to improve the care for families caring for children with severe autism.

Read the abstract here

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