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.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
REFERENCES
Abu-Heija, A. T., Jallad, M. F., & Abukteish, F. (2000). Maternal and perinatal outcome of pregnancies after the age of 45. J Obstet Gynaecol Res, 26(1), 27–30.
American Psychiatric Association (1994). Diagnostic and statistical manual of mental disorders (DSM-IV). Washington, DC: American Psychiatric Association.
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.
Bolton, P. F., Pickles, A., Murphy, M., & Rutter, M. (1998). Autism, affective and other psychiatric disorders: Patterns of familial aggregation. Psychol Med, 28, 385–395.
Bryson, S. E., Clark, B. S., & Smith, I. M. (1988). First report of a Canadian epidemiological study of autistic syndromes. J. Child Psychol Psychiatry, 29, 433–445.
Comi, A. M., Zimmerman, A. W., Frye, V. H., Law, P. A., & Peeden, J. N. (1999). Familial clustering of autoimmune disorders and evaluation of medical risk factors in Autism. J Child Neurol, 14, 388–394.
Croen, L. A., Grether, J. K., & Selvin, S. (2002). Descriptive epidemiology of autism in a California population: Who is at risk? J Autism Dev Disord, 32(3), 217–24.
Dawson, G., Webb, S., Schellenberg, G. D., Dager, S., Friedman, S., Aylward, E., & Richards, T. (2002). Defining the broader phenotype of autism: Genetic, brain, and behavioral perspectives. Dev Psychopathol, 14(3), 581–611.
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.
Elder, J. H. (1994). Beliefs held by parents of autistic children. J Child Adolesc Psychiatr Nurs, 7(1), 9–16.
Folstein, S. E., Santangelo, S. L., Gilman, S. E., Piven, J., Landa, R., Lainhart, J., Hein, J., & Wzorek, M. (1999). Predictors of cognitive test patterns in autism families. J Child Psychol Psychiatry, 40(7), 1117–1128.
Fombonne, E. (1999). The epidemiology of autism: A review. Psychol Med, 29, 769–786.
Gillberg, C., & Wing, L.(1999). Autism: Not an extremely rare disorder. Acta Psychiatr Scand, 99, 399–406.
Gillberg, C., Gillberg, I. C., & Steffenburg, S. (1992). Siblings and parents of children with autism: A controlled population-based study. Dev Med Child Neurol, 34(5), 389–398.
Gray, D. E. (1995). Lay Conceptions of autism: Parents’ explanatory models. Med Anthropo, 16, 99–118.
Honda, H., Shimizu, Y., & Rutter, M. (2005). No effect of MMR withdrawal on the incidence of autism: A total population study. J Child Psychol Psychiatry, 16(6), 572–579.
Hviid, A., Stellfelf, M., Wohlfahrt, J., & Melbye, M. (2003). Association between thimerosal-containing vaccine and autism. JAMA, 290(13), 1763–1766.
Juul-Dam, N., Townsend, H., & Courchesne, E. (2001). Prenatal, perinatal, and neonatal factors in autism, pervasive developmental disorder-not otherwise specified, and the general population. Pediatrics, 107(4), E63.
Kaye, J. A., Del Mar Melero-Montes, M., & Jick, H. (2001). Mumps, measles, and rubella vaccine and the incidence of autism recorded by general practitioners: A time trend analysis. BMJ, 322, 460–463.
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.
Knivsberg, A. M., Reichelt, K. L., Hoien, T., & Nodland, M. (2002). A randomized, controlled study of dietary intervention in autistic syndromes. Nutr Neurosci, 5(4), 251–261.
Lewis, M. E. Suzanne (2002). Refining the spectrum of genes in autism spectrum disorder. Clin Genet, 61(1), 7–12.
Lippman-Hand, A., & Fraser, F. C. (1979). Genetic counseling—the postcounseling period. I. Parents’ perceptions of uncertainty. Am J Med Genet, 4, 51–71.
Muhle, R., Trentacoste, S. V., & Rapin, I. (2004). The Genetics of Autism. Pediatrics, 113, 472–486.
Peltola, H., Patja, A., Leinikki, P., Valle, M., Davidkin, I., & Paunio, M. (1998). No evidence for measles, mumps and rubella vaccine-associated inflammatory bowel disease or autism in a 14-year prospective study. Lancet, 351(9112), 1327–1328.
Piven, J., Gayle, J., Chase, G. A., Fink, B., Landa, R., Wzorek, M. M., & Folstein, S. (1990). A family history study of neuropsychiatric disorders in the adult siblings of autistic individuals. J Am Acad Child Adolesc Psychiatry, 29(2), 177–183.
Piven, J., & Palmer, P. (1999). Psychiatric disorder and the broad autism phenotype: Evidence from a family study of multiple-incidence autism families. Am J Psychiatry, 156, 557–563.
Piven, J., Palmer, P., Landa, R., Santangelo, S., Jacobi, D., & Childress, D. (1997). Personality and language characteristics in parents from multiple-incidence autism families. Am J Med Genet, 74(4), 398–411.
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.
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.
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.
Rosenthal, E. T., Biesecker, L. G., & Biesecker, B. B. (2001). Parental attitudes toward a diagnosis in children with unidentified multiple congenital anomaly syndromes. Am J Med Genet, 103, 106–114.
Smalley, S. L. (1991). Genetic influences in autism. Psychiatr Clin North Am, 14, 125–139.
Smalley, S. L., McCracken, J., & Tanguay, P. (1995). Autism, affective disorders, and social phobia. Am J Med Genet, 60(1), 19–26.
Sorenson, J. R., Swazey, J. P., & Scothch, N. A. (1981). Reproductive pasts, reproductive futures: Genetic counseling and its effectiveness. Birth Defects Orig Artic Ser, 17, 1–192.
Strauss, S. S., & Munton, M. (1985). Common concerns of parents with disabled children. Ped Nurs 11, 371–375.
Sweeten, T. L., Bowyer, S. L., Posey, D. J., Halberstadt, G. M., & McDougle, C. J. (2003). Increased prevalence of familial autoimmunity in probands with pervasive developmental disorders. Pediatrics, 112(5), 420–424.
Tsai, L. Y., & Stewart, M. A. (1983). Etiological implications of maternal age and birth order in infantile autism. J Autism Dev Dis, 13(1), 57–65.
Wakefield, A. J., Murch, S. H., Anthony, A., Linnell, J., Casson, D. M., Malik, M., et al. (1998). Ileal-lymphoid-nodular hyperplasia, non-specific colitis and pervasive developmental disorder in children. Lancet, 351, 637–641.
Weerasekera, D. S., & Udugama, S. G. (2003). Pregnancy at 40 and over: A case-control study in a developing country. J Obstet Gynaecol, 23(6), 625–627.
Weil, J. (2000). Psychosocial genetic counseling. New York: Oxford University Press.
Whiteley, P., Rodgers, J., Savery, D., & Shattock, P. (1999). A gluten-free diet as an intervention for autism and associated spectrum disorder: Preliminary findings. Autism, 3(1), 45–65.
Wing, L., & Potter, D. (2002). The epidemiology of autistic spectrum disorders: Is the prevalence rising? Ment Retard Dev Disabil Res Rev, 8(3), 151–161.
Zwaigenbaum, L., Szatmari, P., Jones, M., Bryson, S., MacLean, J., Mahoney, W., Bartolucci, G., & Tuff, L. (2002). Pregnancy and birth complications in Autism and liability to the broader autism phenotype. J Am Child Adolesc Psych, 41(5), 572–579.
ACKNOWLEDGMENTS
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.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Mercer, L., Creighton, S., Holden, J.J. et al. Parental Perspectives on the Causes of an Autism Spectrum Disorder in their Children. J Genet Counsel 15, 41–50 (2006). https://doi.org/10.1007/s10897-005-9002-7
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10897-005-9002-7