The Experience of Parents in the Diagnosis of Autism A Pilot Study

• Published in: Autism : the international journal of research and practice Vol. 3; no. 3; pp. 273 - 285
• Main Authors: Midence, Kenny, O’neill, Meena
• Format: Journal Article
• Language: English
• Published: Thousand Oaks, CA Sage Publications 01.09.1999; Sage; SAGE PUBLICATIONS, INC
• Subjects: Autism; Autistic children; Biological and medical sciences; Cognition. Intelligence; Confusion; Creativity; Families & family life; Fundamental and applied biological sciences. Psychology; Grounded theory; Medical diagnosis; Parents & parenting; Psychology. Psychoanalysis. Psychiatry; Psychology. Psychophysiology; diagnosis; autism; grounded theory; parents; Human; Autism; Progeny; Personal experience; Parent; Developmental disorder; Diagnosis
• ISSN: 1362-3613; 1461-7005
• DOI: 10.1177/1362361399003003005

Research literature on experiences of parents seeking a diagnosis of autism for their child is scarce. In order to explore this, a pilot study was conducted with four parents of children with autism in North Wales. Semi-structured interviews were conducted to elicit parents’ experiences, and the responses analysed using a grounded theory approach. Six core categories emerged. These included parents’ difficulties in understanding their child’s behaviours and the confusion that resulted from their inability to make sense of these behaviours, and problems in obtaining a diagnosis. The findings also reflect parents’ experience of relief after the correct diagnosis was made. This appeared to enable them to understand and accept autism and the limitations imposed on their child; to improve adaptation to the condition within the family life; and to foster more realistic expectations of their child’s future.