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01-02-2006 | Original Paper

Parental Perspectives on the Causes of an Autism Spectrum Disorder in their Children

Authors: L. Mercer, S. Creighton, J. J. A. Holden, M. E. S. Lewis

Published in: Journal of Genetic Counseling | Issue 1/2006

Abstract

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.

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.PubMed

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

Fombonne, E. (1999). The epidemiology of autism: A review. Psychol Med, 29, 769–786.PubMedCrossRef

Gillberg, C., & Wing, L.(1999). Autism: Not an extremely rare disorder. Acta Psychiatr Scand, 99, 399–406.PubMedCrossRef

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.PubMedCrossRef

Gray, D. E. (1995). Lay Conceptions of autism: Parents’ explanatory models. Med Anthropo, 16, 99–118.CrossRef

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.CrossRef

Hviid, A., Stellfelf, M., Wohlfahrt, J., & Melbye, M. (2003). Association between thimerosal-containing vaccine and autism. JAMA, 290(13), 1763–1766.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

Lewis, M. E. Suzanne (2002). Refining the spectrum of genes in autism spectrum disorder. Clin Genet, 61(1), 7–12.PubMedCrossRef

Lippman-Hand, A., & Fraser, F. C. (1979). Genetic counseling—the postcounseling period. I. Parents’ perceptions of uncertainty. Am J Med Genet, 4, 51–71.PubMedCrossRef

Muhle, R., Trentacoste, S. V., & Rapin, I. (2004). The Genetics of Autism. Pediatrics, 113, 472–486.CrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMed

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.PubMedCrossRef

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.PubMedCrossRef

Smalley, S. L. (1991). Genetic influences in autism. Psychiatr Clin North Am, 14, 125–139.PubMed

Smalley, S. L., McCracken, J., & Tanguay, P. (1995). Autism, affective disorders, and social phobia. Am J Med Genet, 60(1), 19–26.PubMedCrossRef

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.PubMed

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.CrossRef

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.CrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.CrossRef

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.PubMedCrossRef

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.CrossRef

Title: Parental Perspectives on the Causes of an Autism Spectrum Disorder in their Children
Authors: L. Mercer
S. Creighton
J. J. A. Holden
M. E. S. Lewis
Publication date: 01-02-2006
Publisher: Springer US
Published in: Journal of Genetic Counseling / Issue 1/2006
Print ISSN: 1059-7700
Electronic ISSN: 1573-3599
DOI: https://doi.org/10.1007/s10897-005-9002-7

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