Journal of Autism and Developmental Disorders

Gepubliceerd in:

21-11-2020 | Original Paper

Autism Spectrum Disorder and Genetic Testing: Parents’ Attitudes-Data from Turkish Sample

Auteurs: Aynur Bütün Ayhan, Utku Beyazıt, Şenay Topuz, Çağla Zeynep Tunay, Maryam Nazhad Abbas, Serkan Yılmaz

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 9/2021

Abstract

We aimed to examine the opinions of parents’ having a child with ASD, on genetic testing, in a Turkish sample. 951 parents’ attitudes towards genetic testing were included. 89.1% of the parents did not take a genetic test during pregnancy. 87.6% of the parents agreed to take a genetic test if it could explain the cause of ASDs. 93% agreed to take a genetic test, if it would help to have a better treatment in the future. 63.8% of the participants would approve the storage of their DNA samples for the future studies. 94.8% considered being informed about the purpose of taking DNA material for the early diagnosis and 84.2% considered being suggested genetic tests for early diagnosis as important.

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Alford, S. H., McBride, C. M., Reid, R. J., Larson, E. B., Baxevnis, A. D., & Brody, L. C. (2011). Participation in genetic testing research varies by social group. Public Health Genomics, 14, 85–93.CrossRef

Aslan, M. & Şeker, S. (2011) [Social perception and isolation of disabled people: A case of Siirt]. Proceedings of Symposium on Social Rights, pp. 449–463. [in Turkish]

Autism Consortium (2013). Ask an expert: The who, what, how and whys of genetic testing. Retrieved from 06.07.2015, from http://www.autismconsortium.org/blog/detail/ask-an-expert-the -who-what-how-and-whys-of-genetic- testing.

Bearss, K., Johnson, C., Smith, T., Lecavalier, L., Swiezy, N., Aman, M., et al. (2015). Effect of parent training vs parent education on behavioral problems in children with autism spectrum disorder. A randomized clinical trial. JAMA, 313(15), 1524–1533.PubMed

Beresford, B., Rabiee, P., & Sloper, P. (2007). Outcomes for parents with disabled children. Research Works, 3, 1–4.

Besterman, A. D., Sadik, J., Enenbach, M. J., Quintero-Rivera, F., DeAntonio, M., & Martinez-Agosto, J. A. (2020). The feasibility and outcomes of genetic testing for autism and neurodevelopmental disorders on an inpatient child and adolescent psychiatry service. Autism Research, 13, 1450–1464.PubMedCrossRef

Calderon, C., Gomez-Lopez, L., Martinez Costa, C., Borraz, S., Moreno-Villarez, J. M., & Pedron-Giner, C. (2011). Feeling of burden, psychological distress, and anxiety among primary caregivers of children with home enteral nutrition. Journal of Pediatric Psychology, 36(2), 188–195.PubMedCrossRef

Chen, L. S., Xu, L., Huang, T. Y., & Dhar, S. U. (2013). Autism genetic testing: a qualitative study of awareness, attitudes, and experiences among parents of children with autism spectrum disorders. Genetics in Medicine, 15(4), 274–281.PubMedCrossRef

Cohen, D., Pichard, N., Tordjman, S., Baumann, C., Burglen, L., et al. (2005). Specific genetic disorders and autism: clinical contribution towards their identification. Journal of Autism and Developmental Disorders, 35, 103–116.PubMedCrossRef

Cuccaro, M. L., Czape, K., Lee, M. A. J., Rupchock, A., Bendik, D. E., Dueker, N., et al. (2014). Genetic testing and corresponding services among individuals with autism spectrum disorder (ASD). American Journal of Medical Genetics, 164(10), 2592–2600.CrossRef

Dawson-Squibb, J. J., Davids, E. L., & De Vries, P. J. (2019). Scoping the evidence for Early Bird and Early Bird Plus, two United Kingdom-developed parent education training programmes for autism spectrum disorder. Autism, 23(3), 542–555.PubMedCrossRef

Dykens, E. M., Sutcliffe, J. S., & Levitt, P. (2004). Autism and 15q11-q13 disorders: behavioral, genetic, and pathophysiological issues. Mental Retardation and Developmental Disabilities, 10, 284–291.CrossRef

Fernańdez-Alcántara, M., García-Carob, P., Pérez-Marfil, N., Hueso-Montoro, C., & Laynez-Rubio., L., & Cruz-Quintana, F. . (2016). Feelings of loss and grief in parents of children diagnosed with autism spectrum disorder (ASD). Research in Developmental Disabilities, 55, 312–321.PubMedCrossRef

Grove, J., Ripke, S., Als, T. D., Mattheisen, M., Walters, R. K., Won, H., et al. (2019). Identification of common genetic risk variants for autism spectrum disorder. Nature Genetics, 51, 431–444.PubMedPubMedCentralCrossRef

Haga, B., Barry, W. T., Mills, R., Ginsburg, G. S., Svetkey, L., Sullivan, J., et al. (2013). Public knowledge of and attitudes toward genetics and genetic testing. Genetic Testing and Molecular Biomarkers, 17(4), 327–335.PubMedPubMedCentralCrossRef

Harrington, J. W., Emuren, L., Restaino, K., & Schrier Vergano, S. (2018). Parental perception and participation in genetic testing among children with autism spectrum disorders. Clinical Pediatrics, 57(14), 1642–1655.PubMedCrossRef

Hayes, S. A., & Watson, S. L. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43, 629–642.PubMedCrossRef

Heil, K. M., & Schaaf, C. P. (2013). The genetics of autism spectrum disorders–a guide for clinicians. Current Psychiatry Reports, 15, 334.PubMedCrossRef

Hendel, Y., Meiri, G., Flusser, H., Michaelovski, A., Dinstein, I., & Menashe, I. (2020). Factors affecting family compliance with genetic testing of children diagnosed with autism spectrum disorder. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-020-04589-y.CrossRef

Johanessen, J., Naerland, T., Hope, S., Torske, T., Hoyland, A. L., Strohmaier, J., et al. (2017). Parents’ attitudes toward clinical genetic testing for autism spectrum disorder—Data from a Norwegian sample. International Journal of Molecular Sciences, 18(5), 1078.CrossRef

Johnson, H. M., Gaitanis, J., & Morrow, E. M. (2011). Genetics in autism diagnosis: adding molecular subtypes to neurobehavioral diagnoses. Medicine & Health Rhode Island, 94, 124–126.

Jones, L., Gold, E., Totsika, V., Hastings, R. P., Jones, M., Griffiths, A., et al. (2018). A mindfulness parent well-being course: Evaluation of outcomes for parents of children with autism and related disabilities recruited through special schools. European Journal of Special Needs Education, 33(1), 16–30.CrossRef

Kandolkar, A. C., & Kenchappanavar, R. N. (2014). Burden of care and parent-child relationship of parents of autistic children. Journal of Psychosocial Research, 9(2), 309–317.

Kiely, B., Vettam, S., & Adesman, A. (2016). Utilization of genetic testing among children with developmental disabilities in the United States. The Application of Clinical Genetics, 9(1), 93–100.PubMedPubMedCentralCrossRef

Knight, A. (2007). A straightforward guide to caring for a disabled child: The comprehensive guide to child disability. U.K.: Straightforward Publishing.

Lavelle, T. A., Weinstein, M. C., Newhouse, J. P., Munir, K., Kuhlthau, K. A., & Prosser, L. A. (2014). Economic burden of childhood autism spectrum disorders. Pediatrics, 133, 520–529.CrossRef

Li, M., Amuta, A., Xu, L., Dhar, S. U., Talwar, D., Jung, E., et al. (2016). Autism genetic testing information needs among parents of affected children: A qualitative study. Patient Education and Counseling, 99(6), 1011–1016.PubMedCrossRef

Marchant, G. E., & Robert, J. S. (2009). Genetic testing for autism predisposition: ethical, legal, and social challenges. Houston Journal of Health Law & Policy, 9, 203–235.

Marsack-Topolewski, C. N., & Church, H. L. (2019). Impact of caregiver burden on quality of life for parents of adult children with autism spectrum disorder. Am J Intellect Dev Disabil, 124(2), 145–156.PubMedCrossRef

Martins, C. D., Walker, S. P., & Fouche, P. (2013). Fathering a child with autism spectrum disorder: An interpretive phenomenological analysis. The Indo-Pacific Journal of Phenomenology, 13(1), 1–19.CrossRef

Narcisa, V., Discenza, M., Vaccari, E., Rosen-Sheidley, B., Hardan, A. Y., & Couchon, E. (2013). Parental interest in a genetic risk assessment test for autism spectrum disorders. Clin Pediatr (Phila), 52(2), 139–146.CrossRef

Önder, A., & Gülay, H. (2010). Comparing acceptance and rejection levels of mentally handicapped children’s parents and normally developed children’s parents. New World Sciences Academy, 5(3), 1–9.

Parata, J., Lawson, W., & Coelho, R. (2018). Parent training for parents of children on the autism spectrum: A review. International Journal of Clinical Neurosciences and Mental Health, 5(3), 1–8.

Parish, S. L., Thomas, K. C., Williams, C. S., & Crossman, M. K. (2015). Autism and families’ financial burden: The association with health insurance coverage. Am J Intellect Dev Disabil, 120(2), 166–175.PubMedCrossRef

Picardi, A., Gigantesco, A., Tarolla, E., Stoppioni, V., Cerbo, R., Cremonte, M., et al. (2018). Parental burden and its correlates in families of children with autism spectrum disorder: A multicentre study with two comparison groups. Clin Pact Epidemiol Ment Health, 14, 143–176.CrossRef

Rabba, A. S., Dissanayake, C., & Barbaro, J. (2019). Parents’ experiences of an early autism diagnosis: Insights into their needs. Research in Autism Spectrum Disorders, 66, 101415.CrossRef

Reiff, M., Giarelli, E., Bernhardt, B. A., Easley, E., Spinner, N. B., Sankar, P. L., et al. (2015). Parents’ perceptions of the usefulness of chromosomal microarray analysis for children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 45, 3262–3275.PubMedPubMedCentralCrossRef

Sandin, S., Lichtenstein, P., Kuja-Halkola, R., Hultman, C., Larsson, H., & Reichenberg, A. (2017). The heritability of autism spectrum disorder. JAMA, 318(12), 1182–1184.PubMedPubMedCentralCrossRef

Santrock, W. (2014). Life span development (13th ed.). USA: McGraw Hill.

Satterstrom, F. K., Kosmicki, J. A., Wang, J., Breen, M. S., Rubies, S., An, J., et al. (2020). Large-scale exome sequencing study implicates both developmental and functional changes in the neurobiology of autism. Cell, 180, 1–17.CrossRef

Schultz, T., Schmidt, C., & Sticther, J. P. (2011). A review of parent education programs for parents of children with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 26(2), 96–104.CrossRef

Stessman, H., Xiong, B., Coe, B., Wang, T., Hoekzema, K., Fenckova, M., et al. (2017). Targeted sequencing identifies 91 neurodevelopmental-disorder risk genes with autism and developmental-disability biases. Nature Genetics, 49, 515–526.PubMedPubMedCentralCrossRef

Stewart, M., McGillivray, J. A., Forbes, D., & Austin, D. W. (2017). Parenting a child with an autism spectrum disorder: a review of parent mental health and its relationship to a trauma-based conceptualisation. Advances in Mental Health, 15(1), 4–14.CrossRef

Trottier, M., Roberts, W., Drmic, I., Scherer, S. W., Weksberg, R., Cytrynbaum, C., et al. (2013). Parents’ perspectives on participating in genetic research in autism. Journal of Autism and Developmental Disorders, 43, 556–568.PubMedCrossRef

Ünal, B., & Baran, G. (2010). The study of child rearing attitudes of the mothers with mentally retarded children. Contemporary Education, 35(375), 37–43. ([in Turkish]).

Volkmar, F. R., Riechow, B., Westphal, A., & Mandell, D. S. (2014). Autism and the autism spectrum: Diagnostic concepts. In F. R. Volkmar, S. J. Rogers, R. Paul, & K. A. Pelphrey (Eds.), Handbook of autism and pervasive developmental disorders. Assessment, interventions, and policy (pp. 3–28). USA: Wiley.

Waizbard-Bartov, E., Yehonatan-Schori, M., & Golan, O. (2019). Personal growth experiences of parents to children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 49, 1330–1341.PubMedCrossRef

Zebolsky, A., Vos, D., & Soares, N. (2020). Awareness of genetic testing for children with autism spectrum disorder among caregivers in an autism support group. Journal of Community Genetics, 11, 405–411.PubMedPubMedCentralCrossRef

Zhao, S., Chen, W. J., Dhar, S. U., Eble, T. N., Kwok, O. M., & Chen, L. S. (2019). Genetic testing experiences among parents of children with autism spectrum disorder in the United States. Journal of Autism and Developmental Disorders, 49(12), 4821–4833.PubMedCrossRef

Titel: Autism Spectrum Disorder and Genetic Testing: Parents’ Attitudes-Data from Turkish Sample
Auteurs: Aynur Bütün Ayhan
Utku Beyazıt
Şenay Topuz
Çağla Zeynep Tunay
Maryam Nazhad Abbas
Serkan Yılmaz
Publicatiedatum: 21-11-2020
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 9/2021
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-020-04798-5

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