Paper
Thursday, July 14, 2005
The Second Crisis: The experiences of parents of prepubescent children with autistic spectrum disorder
M. Souders, MSN, RN, CRNP1, S.E. Levy, MD1, Michelle Petrongolo, BA1, Jennifer Plumb, MSW1, Megan Carolan, BA1, Joan Bloch, PhD, CRNP2, and Ellen Giarelli, RN, EdD, CS, CRNP3. (1) Regional Autism Center, The Children's Hospital of Philadelphia, Philadelphia, PA, USA, (2) School of Nursing, The College of New Jersey, Ewing, NJ, USA, (3) School of Nursing, University of Pennsylvania, Philadelphia, PA, USA
Autistic Spectrum Disorders (ASD) are neurobiological disorders affecting the social communicative and behavioral streams of development. As children with ASD enter the prepubescent years, parents' have voiced feeling a resurgence of grief, devastation and isolation. The middle school years mark a time of emerging independence, development of abstract thought and a shift in social expectations and demands. Non-verbal learning difficulties and social judgement deficits in children with ASD can become more apparent. To date there is a lack of qualitative research with children and families with ASD at any age. The purpose of this hermeneutic phenomenological study is to understand the meaning of being a parent of a prepubescent child with ASD. Twenty–thirty parents of a child ,10-12 year old,with ASD will be interviewed by a pediatric nurse practitioner at a Regional Autism Center. The open-ended interviews will be audiotaped and transcribed. Narrative content will be analyzed first by level 1 and 2 coding to identify significant meanings and then grouped together into exemplars and paradigm cases. Data will be stored and managed using NUD*IST qualitative software program. Subsequent interviews will be coded and added to analysis. These findings will offer new insights to health care providers and educators and provide thoughtful anticipatory guidance and comfort for parents with children with ASD. Preliminary results from two interviews with mothers of 10 year old sons with ASD, 150 minutes of transcripts, identified that the demands of 4th grade and thoughts of future middle school responsibilities created a resurfacing of feeling of devastation and worry for both mothers. Mothers project into the future and struggle with the hope for their child's independence. After the first crisis of the initial diagnosis of ASD, these mothers are experiencing a second emotional crisis, the prepubescent years.