Severe Childhood Autism: The Family Lived Experience

Jocelyn Bessette Gorlin, Cynthia Peden McAlpine, Ann Garwick, Elizabeth Wieling

Research output: Contribution to journalArticlepeer-review

29 Scopus citations


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.

Original languageEnglish (US)
Pages (from-to)580-597
Number of pages18
JournalJournal of pediatric nursing
Issue number6
StatePublished - Nov 1 2016

Bibliographical note

Funding Information:
There are no conflicts of interest. This research was supported by a pre-doctoral fellowship through the University of Minnesota School of Nursing Center for Children with Special Heath Care Needs which was funded by the Maternal Child Health Bureau (MCHB), and the University of Minnesota Leadership Education in Neurodevelopment and Related Disabilities Fellowship (LEND), also funded by the MCHB.

Publisher Copyright:
© 2016 Elsevier Inc.


  • Childhood autism
  • Family
  • Phenomenology
  • Qualitative research
  • Severe autism


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