Paper
Thursday, July 14, 2005
Accessing a Diagnosis for a Child With an Autistic Spectrum Disorder (ASD):
Joan Bloch, PhD, CRNP, School of Nursing, The College of New Jersey, Ewing, NJ, USA, M. Souders, MSN, RN, CRNP, Regional Autism Center, The Children's Hospital of Philadelphia, Philadelphia, PA, USA, Marcia Gardner, MA, CPNP, PNP, College of Nursing and Health Professions, Drexel University, Philadelphia, PA, USA, and Ellen Giarelli, RN, EdD, CS, CRNP, School of Nursing, University of Pennsylvania, Philadelphia, PA, USA.
While the number of children with autistic spectrum disorder (ASD) is unknown, it is increasing. The literature provides limited guidelines to help healthcare professionals and policy makers to fully appreciate caregivers' experiences and the impact on families. Further exploration of issues associated with parenting a child with ASD is needed to establish a foundation for the development of the most effective health care delivery strategies for this specialized population. The first responsibility of a parent is to assure an accurate diagnosis is made in a timely manner. Purpose: The purpose of this study is to explore caregiver difficulties associated with accessing diagnostic services for the child's ASD. Design: Thematic content analysis to describe parents' experiences. Sample: mothers (n=4) of a child with ASD, living within 90 minutes from Philadelphia. Methods: Data collection, analysis, and verification of the development of theoretical explanations occurred simultaneously. Written informed consent obtained from all subjects before minimally structured interviews were conducted. All interviews audiotaped and transcribed during 13 months (2002-2003). Findings: This presentation will focus on the specific experiences of the mothers of children diagnosed with ASD as they attempted to find out what was wrong with their children. The journey for a diagnosis of an ASD involved frustration, time delays, and visits to multiple health care providers; it often took several years before a definitive diagnosis was obtained. Mothers reported they were frequently blamed for their children's poor behavior by professionals, friends and family. Confusion selecting proper ‘specialists' qualified to diagnose ASD was common. Personal costs were excessive. Conclusions: Families struggle to access services even for a diagnosis. In this study, the caregivers had the psychological, cognitive, and financial resources to persist. What about children with caregivers without resources? Improved services are needed to ameliorate the burden to families, even in obtaining a diagnosis.