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Autism
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Parents’ experience of having a child with autism and learning disabilities living in a group home

A case study

Ylva Benderix

Lund University, Sweden, ylva.benderix{at}med.lu.se

Berit Nordström

Lund University, Sweden

Bengt Sivberg

Lund University, Sweden

Some children with autism and learning disabilities also have aberrant behaviours that are difficult to regulate and stressful for both the child and family members. This case study concerns experiences of 10 parents from five families before and 2 years after entrusting their 10- to 11-year-old child with autism to a group home. Hermeneutic phenomenological analysis of narrative interviews with the parents before the child’s moving showed them experiencing grief and sorrow, total exhaustion because of inability to regulate their child’s behaviours, social isolation, and negative effects on the child’s siblings, but experiencing themselves as more sympathetic than previously towards other people with problems. Two years later they experienced relief for the family due to the group home arrangement and the child’s improvement, but with an ethical dilemma which made them feel guilty, despite increased hope for the future. Some also felt unhappy with the staff situation at the group home.

Key Words: autism • exhaustion • group home • parents • respite • Sweden

Autism, Vol. 10, No. 6, 629-641 (2006)
DOI: 10.1177/1362361307070902
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