International Meeting for Autism Research: Parental Experience of Caring for Young Adults with Asperger Syndrome

Parental Experience of Caring for Young Adults with Asperger Syndrome

Saturday, May 22, 2010
Franklin Hall B Level 4 (Philadelphia Marriott Downtown)
11:00 AM
I. Fisher , Department of Psychology, Tel-Aviv University, Tel-Aviv, Israel
H. Omer , Department of Psychology, Tel-Aviv University, Tel-Aviv, Israel
O. Golan , Department of Psychology, Bar-Ilan University, Ramat-Gan, Israel
H. Shilo , Department of Psychology, Bar-Ilan University, Ramat-Gan, Israel
Background: Asperger Syndrome (AS) is a neuro-developmental condition that has profound effects on individuals' socio-emotional functioning and, as a consequence, on their ability to cope independently. Since the condition is lifelong, continuous care and support for individuals with AS may be needed, alas, support systems for adults with AS are not widely available. Hence, parents of young adults with AS often serve as mediators between their son/daughter and society. Parents may be burdened with great feelings of responsibility and invest heavily in their children’s welfare, attempting to prepare them to adulthood and promote their independence. The constant parental care required may have grave emotional and practical effects on parents' quality of life. Previous attempts to study the effects of parenting a son/daughter with AS have focused on the parenting of children.
Objectives: This study aims to describe the experience of parents of adults with AS. We studied the emotional impact supporting an adult son/daughter with AS may have on the parents, as well as the price paid for a disrupted marital and family life. The study explored the acceptance of the situation by the parents, their struggles to bring up their adult son/daughter with AS and their worries and hopes for the future. The study sheds light on the parents’ differing perspectives and their varied ways of coping with their situation. Additionally, this study aims to lay the foundation for an intervention intended to help parents of adults with AS.
Methods: Parents of 10 adults (7 males and 3 females), aged 20-30, who were diagnosed with AS, were interviewed by the first author. The interview was semi-structured and lasted about 90 minutes. After completing the interviews, transcripts were analyzed using a qualitative method, according to the principles of grounded based theory.
Results: Analysis of the interviews revealed several themes which were common to the parents' experience.  Among the themes that were most prevalent: (1) The experience of harsh feelings such as frustration, anger, embarrassment, and anxiety. These were directed towards the adult son/daughter, towards the other parent, and towards support workers (2) Different styles of coping with the situation, both emotionally and practically. (3) Differences between fathers’ and mothers’ perspectives and coping styles and (4) varied attitudes relating to the adult son/daughter’s dependence on the parents, as well as parents’ ability to set demands and limits to their son/daughter.
Conclusions: AS has profound effects not only on the diagnosed individual but also on his/her parents and family. Parents report of difficulties in a wide range of aspects of life. The identification of the specific experience of parents of adults with AS can lay the foundation for an intervention, aimed to help the parents deal in a more effective manner with their son/daughter's condition.
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