Parental Perspectives on the Causes of an Autism Spectrum Disorder in their Children
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Autism Spectrum Disorders (ASDs) are complex neurodevelopmental disorders with many biological causes, including genetic, syndromic and environmental. Such etiologic heterogeneity impacts considerably upon parents’ needs for understanding their child's diagnosis. A descriptive survey was designed to investigate parental views on the cause(s) of ASD in their child. Among the 41 parents who replied to the questionnaire, genetic influences (90.2%), perinatal factors (68.3%), diet (51.2%), prenatal factors (43.9%) and vaccines (40.0%) were considered to be the most significant contributory factors. Parents reported inaccurately high recurrence risks, misperceptions of the contribution of various putative factors, feelings of guilt and blame regarding their child's diagnosis, as well as a lack of advocacy for genetic counseling by non-geneticist professionals. This study offers clinicians and researchers further insight into what parents believe contributed to their child's diagnosis of ASD and will help facilitate genetic counseling for these families.
KEY WORDS:autism spectrum disorder ASD autism pervasive developmental disorder PDD genetic counseling parental perspectives etiology genetics recurrence risk family history.
The authors would like to thank all the participants of the study. We wish to express special thanks to Anita Acheson and other members of the ASD-CARC Parent Advisory Group, and to participating ASD-CARC regional teams who assisted in the creation of the questionnaire and aided in its distribution. This work was supported by funds from the Canadian Institutes for Health Research (CIHR) through an Interdisciplinary Health Research Team grant (RT-43820) to the Autism Spectrum Disorders Canadian-American Research Consortium (ASD-CARC: www.autismresearch.ca) (JJAH, principal investigator). MESL is supported by a CIHR Institute of Genetics Clinician Investigator Award (2003–2005) and Michael Smith Foundation for Health Research Career Investigator (Scholar) Award.
- American Psychiatric Association (1994). Diagnostic and statistical manual of mental disorders (DSM-IV). Washington, DC: American Psychiatric Association.Google Scholar
- Bolton, P. F., Murphy, M., MacDonald, H., Whitlock, B., Pickles, A., & Michael, R. (1997). Obstetric complications in autism: Consequences or causes of the condition? J Am Acad Child Adolesc, 36(2), 272–281.Google Scholar
- DeWild, S., Carey, I. M., Richards, N., Hilton, S. R., & Cook, D. G. (2001). Do children who become autistic consult more often after MMR vaccination? Br J Gen Pract, 51, 226–227.Google Scholar
- Kelly, A. W., & Sime, A. M. (1990). Language as research data: Application of computer content analysis in nursing research. Adv Nurs Sci, 12(3), 32–40.Google Scholar
- Reichelt, K. L., Ekrem, J., & Scott, H. (1990). Gluten, Mild proteins and autism: Dietary intervention effects on behavior and peptide secretion. J Appl Nutr, 42(1), 1–11.Google Scholar
- Rosen, B., Wolpert, C., Donnelly, S., Pericak-Vance, M., & Folstein, S. (2000). Surveying parents of children with Autism: What is their understanding of the genetic basis for this disorder? In: Abstracts from the 19th Annual Education Conference of the NSGC (Savanah, Georgia, Nov 2000). J Genet Counsel, 9(6), 547.Google Scholar
- Rosen-Sheidley, B., Wolpert, C., Feigo-Schiffman, J., Palmer, C., Folstein, S., & Pericak-Vance, M. (2002). Web-based survey of families with autism: Reassessing the need for genetic education. In: Abstracts from the Twenty-First Annual Education Conference of the NSGC (Phoenix, Arizona, Nov 2002). J Genet Counsel, 11(6), 488.Google Scholar
- Strauss, S. S., & Munton, M. (1985). Common concerns of parents with disabled children. Ped Nurs 11, 371–375.Google Scholar
- Weil, J. (2000). Psychosocial genetic counseling. New York: Oxford University Press.Google Scholar