Abstract
We investigated parent reports of use of special education and support services, use of evidence-based practices (EBPs), use of past and current complementary and alternative medicine (CAM) treatments, non-use of CAM treatments, willingness, and unwillingness to use CAM treatments, reasons for use and non-use of CAM treatments, and perceptions of EBPs and CAM treatments in their children’s functioning. We collected data from a total of 166 parents of children with autism spectrum disorder (ASD) through a web-based survey. 94% of the parents reported lifetime use of at least one CAM treatment. Parents weighed on a wide variety of factors in decision-making. CAM treatments use was positively associated with parental educational level, length of time since ASD diagnosis, and child’s ASD severity.
Similar content being viewed by others
References
Akins, C. R. S., Krakowiak, P., Angkustsiri, K., Hertz-Picciotto, I., & Hansen, R. L. (2014). Utilization patterns of conventional and complementary/alternative treatments in children with autism spectrum disorders and developmental disabilities in a population-based study. Journal of Developmental and Behavioral Pediatrics: JDBP, 35(1), 1–10. https://doi.org/10.1097/DBP.0000000000000013
Alnemary, F. M., Aldhalaan, H. M., Simon-Cereijido, G., & Alnemary, F. M. (2017). Services for children with autism in the Kingdom of Saudi Arabia. Autism, 21(5), 592–602. https://doi.org/10.1177/1362361316664868
An, S., Kanderzhanova, A., Akhmetova, A., Foster, F., & Chan, C. K. (2020). “Chasing hope”: Parents’ perspectives on complementary and alternative interventions for children with autism in Kazakhstan. Autism, 24(7), 1817–1828. https://doi.org/10.1177/1362361320923494
Ataş, B., Özsandıkcı, İ., Saral, D., & Olçay, S. (2021). Özel Eğitim Öğretmenlerinin Bilimsel Dayanaklı Uygulamalara Yönelik Görüşlerinin İncelenmesi [Opinions of Special Education Teachers Toward Evidence-Based Practices]. Paper presented at the National Special Education Congress, İzmir, Turkey.
Barton, E. E., Reichow, B., Schnitz, A., Smith, I. C., & Sherlock, D. (2015). A systematic review of sensory-based treatments for children with disabilities. Research in Developmental Disabilities, 37, 64–80. https://doi.org/10.1016/j.ridd.2014.11.0060891-4222/
Bilgic, A., Cöngöloğlu, A., Hergüner, S., Türkoğlu, S., Bahali, K., Gürkan, K., Durukan, I., & Türkbay, T. (2013). Use of complementary and alternative medicine in children with autism spectrum disorders: A multicenter study. Nöro Psikiyatri Arşivi, 50(3), 237–243. https://doi.org/10.4274/npa.y6389
Bowker, A., D’Angelo, N. M., Hicks, R., & Wells, K. (2011). Treatments for autism: Parental choices and perceptions of change. Journal of Autism and Developmental Disorders, 41(10), 1373–1382. https://doi.org/10.1007/s10803-010-1164-y
Büyüköztürk, Ş., Kılıç, Ç. E., Akgün, Ö. E., Karadeniz, Ş., & Demirel, F. (2019). Scientific research methods (27th edition). Pegem Academy Press.
Call, N. A., Delfs, C. H., Reavis, A. R., & Mevers, J. L. (2015). Factors influencing treatment decisions by parents for their children with autism spectrum disorder. Research in Autism Spectrum Disorders, 15–16, 10–20. https://doi.org/10.1016/j.rasd.2015.04.001
Carlon, S., Carter, M., & Stephenson, J. (2015). Decision-making regarding early intervention by parents of children with autism spectrum disorder. Journal of Developmental and Physical Disabilities, 27(3), 285–305. https://doi.org/10.1007/s10882-014-9415-z
Carlon, S., Carter, M., & Stephenson, J. (2013). A review of declared factors identified by parents of children with autism spectrum disorders (ASD) in making intervention decisions. Research in Autism Spectrum Disorders, 7(2), 369–381. https://doi.org/10.1016/j.rasd.2012.10.009
Carlon, S., Stephenson, J., & Carter, M. (2014). Parent reports of treatments and interventions used with children with autism spectrum disorders (ASD): A review of the literature. Australasian Journal of Special and Inclusive Education, 38(1), 63-90. https://doi.org/10.1017/jse.2014.4
Centers for Disease Control and Prevention. (2020). National diabetes statistics report, 2020. Atlanta, GA: Centers for Disease Control and Prevention, US Department of Health and Human Services, https://www.cdc.gov/diabetes/pdfs/data/statistics/national-diabetes-statisticsreport.pdf
Christon, L. M., Mackintosh, V. H., & Myers, B. J. (2010). Use of complementary and alternative medicine (CAM) treatments by parents of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 4(2), 249–259. https://doi.org/10.1016/j.rasd.2009.09.013
Cook, B. G., & Odom, S. L. (2013). Evidence-based practices and implementation science in special education. Exceptional children, 79(2), 135–144. https://doi.org/10.1177/001440291307900201
Dawson, G., & Watling, R. (2000). Interventions to facilitate auditory, visual, and motor integration in autism: A review of the evidence. Journal of Autism and Developmental Disorders, 30(5), 415–421.
Dube, A. (2020). Reviewing the role of play therapy in the behavioural management of children with ASD. Int j of Social Science and Economic Research, 5(6), 1643–1650. https://doi.org/10.46609/IJSSER.2020.v05i06.021
Eldevik, S., Hastings, R. P., Hughes, J. C., Jahr, E., Eikeseth, S., & Cross, S. (2009). Meta-analysis of early intensive behavioral intervention for children with autism. Journal of Clinical Child & Adolescent Psychology, 38(3), 439–450. https://doi.org/10.1080/15374410902851739
Fantino, E., Stolarz-Fantino, S., & Navarro, A. (2003). Logical fallacies: A behavioral approach to reasoning. The Behavior Analyst Today, 4(1), 109-117. https://doi.org/10.1037/h0100014
Finke, E., Drager, K., & Serpentine, E. C. (2015). It’s not humanly possible to do everything: Perspectives on intervention decision-making processes of parents of children with autism spectrum disorders. Perspectives on Language Learning and Education, 22(1), 13–21. https://doi.org/10.1044/lle22.1.13
Gibbard, W. B. (2005). The use of complementary and alternative medicine by children and adolescents with autistic spectrum disorders. Master’s thesis, Department of Community and Health Sciences, The University of Calgary. https://doi.org/10.11575/PRISM/14978
Goin-Kochel, R. P., Myers, B. J., & Mackintosh, V. H. (2007). Parental reports on the use of treatments and therapies for children with autism spectrum disorders. Research in Autism Spectrum Disorders, 1(3), 195–209. https://doi.org/10.1016/j.rasd.2006.08.006
Granich, J., Hunt, A., Ravine, D., Wray, J., & Whitehouse, A. J. (2014). High use of complementary and alternative medication among children with autism is not associated with the severity of core symptoms. Journal of Autism, 1(4), 1–8. https://doi.org/10.7243/2054-992X-1-4
Green, V. A., Pituch, K. A., Itchon, J., Choi, A., O’Reilly, M., & Sigafoos, J. (2006). Internet survey of treatments used by parents of children with autism. Research in Developmental Disabilities, 27(1), 70–84. https://doi.org/10.1016/j.ridd.2004.12.002
Guner, U. C., Günay, U., & Acar, M. D. (2021). Opinions of Turkish parents of children with autism spectrum disorder on use of complementary and alternative medicine methods. Research in Autism Spectrum Disorders, 88, 1–10. https://doi.org/10.1016/j.rasd.2021.101847
Hall, S. E., & Riccio, C. A. (2012). Complementary and alternative treatment use for autism spectrum disorders. Complementary Therapies in Clinical Practice, 18(3), 159–163. https://doi.org/10.1016/j.ctcp.2012.03.004
Hanson, E., Kalish, L. A., Bunce, E., Curtis, C., McDaniel, S., Ware, J., & Petry, J. (2007). Use of complementary and alternative medicine among children diagnosed with autism spectrum disorder. Journal of Autism and Developmental Disorders, 37(4), 628–636. https://doi.org/10.1007/s10803-006-0192-0
Harrington, J. W., Rosen, L., Garnecho, A., & Patrick, P. A. (2006). Parental perceptions and use of complementary and alternative medicine practices for children with autistic spectrum disorders in private practice. Journal of Developmental & Behavioral Pediatrics, 27(2), 156–161.
Harris, P. E., Cooper, K. L., Relton, C., & Thomas, K. J. (2012). Prevalence of complementary and alternative medicine (CAM) use by the general population: A systematic review and update. International journal of clinical practice, 66(10), 924–939. https://doi.org/10.1111/j.1742-1241.2012.02945.x
Hebert, E. B. (2014). Factors affecting parental decision-making regarding interventions for their child with autism. Focus on Autism and Other Developmental Disabilities, 29(2), 111–124. https://doi.org/10.1177/1088357614522291
Hocaoğlu, N., & Akkaş-Baysal, E. (2019). Quantitative research models-patterns. In G. Ocak (Ed.), Scientific research methods in education (pp. 66–119). Pegem Academy Press
Horner, R. H., Carr, E. G., Halle, J., McGee, G., Odom, S., & Wolery, M. (2005). The use of single-subject research to identify evidence-based practice in special education. Exceptional Children, 71(2), 165–179. https://doi.org/10.1177/001440290507100203
Howard, J. S., Sparkman, C. R., Cohen, H. G., Green, G., & Stanislaw, H. (2005). A comparison of intensive behavior analytic and eclectic treatments for young children with autism. Research in Developmental Disabilities, 26(4), 359–383. https://doi.org/10.1016/j.ridd.2004.09.005
Höfer, J., Bachmann, C., Kamp-Becker, I., Poustka, L., Roessner, V., Stroth, S., Wolff, N., & Hoffmann, F. (2019). Willingness to try and lifetime use of complementary and alternative medicine in children and adolescents with autism spectrum disorder in Germany: A survey of parents. Autism, 23(7), 1865–1870. https://doi.org/10.1186/s12888-019-2043-5
Hyman, S. L., & Levy, S. E. (2011). Dietary, complementary and alternative therapies. In B. Reichow, P. Doehring, D. V. Cicchetti, & F. R. Volkmar (Eds.), Evidence-based practices and treatments for children with autism (pp. 275–293). Springer.
Johnson, R. B., & Christensen, L. B. (2019). Educational Research (7th ed.). Sage.
Karadag, G., & Bilsin, E. (2016). Demographic characteristics and health problems related to disability of children with a disability and their families. The Journal of Pediatric Research, 3(1), 41–49. https://doi.org/10.4274/jpr.93063
Konuk-Sener, D., & Karaca, A. (2020). Use of complementary and alternative medicine treatments by mothers of children with developmental disabilities: a cross sectional study. Nursing & Health Sciences, 22(2), 328–338. https://doi.org/10.1111/nhs.12733
Köksal, M., & Erciyes, J. C. (2021). Evaluation of psycho-social problems in the families of children diagnosed with autism. Aydın Journal of Health, 7(3), 235–254. Retrieved from https://dergipark.org.tr/en/pub/asder/issue/65413/982922
Kurt, O., & Subaşı-Yurtçu, A. B. (2017). Comprehensive interventions for individuals with autism spectrum disorder. Sakarya University Journal of Education, 7(1), 155–182. https://doi.org/10.19126/suje.273808
Lainhart, J. E., & Folstein, S. E. (1994). Affective disorders in people with autism: A review of published cases. Journal of Autism and Developmental Disorders, 24(5), 587–601.
Levy, S. E., & Hyman, S. L. (2002). Alternative/complementary approaches to treatment of children with autistic spectrum disorders. Infants & Young Children, 14(3), 33–42.
Levy, S. E., Mandell, D. S., Merhar, S., Ittenbach, R. F., & Pinto-Martin, J. A. (2003). Use of complementary and alternative medicine among children recently diagnosed with autistic spectrum disorder. Journal of Developmental & Behavioral Pediatrics, 24(6), 418–423
Lindly, O. J., Thorburn, S., Heisler, K., Reyes, N. M., & Zuckerman, K. E. (2018). Parents’ use of complementary health approaches for young children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 48(5), 1803–1818. https://doi.org/10.1007/s10803-017-3432-6
Lucas, S., Kumar, S., Leach, M. J., & Phillips, A. C. (2020). Complementary and alternative medicine use in Australian children with acute respiratory tract infection-A cross-sectional survey of parents. Complementary Therapies in Clinical Practice, 39, 101171. https://doi.org/10.1016/j.ctcp.2020.101171
Masri, A. T., Khatib, F., Al Qudah, A., Nafi, O., Almomani, M., Bashtawi, M., Alomari, F., Qutifan, S., & Qutifan, A. (2020). Parental use of conventional and complementary therapy for autism in Jordan. Complementary Therapies in Medicine, 48, 1–6. https://doi.org/10.1016/j.ctim.2019.102275
Meral, B. F., & Cavkaytar, A. (2015). The perceptions of family quality of life of parents of children with autism. Kastamonu Education Journal, 23(3), 1363–1380.
Miller, V. A., Schreck, K. A., Mulick, J. A., & Butter, E. (2012). Factors related to parents’ choices of treatments for their children with autism spectrum disorders. Research in Autism Spectrum Disorders, 6(1), 87–95. https://doi.org/10.1016/j.rasd.2011.03.008
National Autism Center. (2009). Evidence-based practice and autism in the schools: A guide to providing appropriate interventions to students with autism spectrum disorder. Randolph, MA: National Autism Center.
Nickel, R. E. (1996). Controversial therapies for young children with developmental disabilities. Infants & Young Children, 8(4), 29–40.
Owen-Smith, A. A., Bent, S., Lynch, F. L., Coleman, K. J., Yau, V. M., Pearson, K. A., Massolo, M. L., Quinn, V., & Croen, L. A. (2015). Prevalence and predictors of complementary and alternative medicine use in a large insured sample of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 17, 40–51. https://doi.org/10.1016/j.rasd.2015.05.002
Perrin, J. M., Coury, D. L., Hyman, S. L., Cole, L., Reynolds, A. M., & Clemons, T. (2012). Complementary and alternative medicine use in a large pediatric autism sample. Pediatrics, 130(2), 77–82. https://doi.org/10.1542/peds.2012-0900E
Salomone, E., Charman, T., McConachie, H., & Warreyn, P. (2015). Prevalence and correlates of use of complementary and alternative medicine in children with autism spectrum disorder in Europe. European Journal of Pediatrics, 174(10), 1277–1285.
Senel, H. G. (2010). Parents’ views and experiences about complementary and alternative medicine treatments for their children with autistic spectrum disorder. Journal of Autism and Developmental Disorders, 40(4), 494–503. https://doi.org/10.1007/s10803-009-0891-4
Shepherd, D., Csako, R., Landon, J., Goedeke, S., & Ty, K. (2018). Documenting and understanding parent’s intervention choices for their child with autism spectrum disorder. Journal of Autism and Developmental Disorders, 48(4), 988–1001. https://doi.org/10.1007/s10803-017-3395-7
Smith, C. A., Parton, C., King, M., & Gallego, G. (2020). Parents’ experiences of information-seeking and decision-making regarding complementary medicine for children with autism spectrum disorder: a qualitative study. BMC Complementary Medicine and Therapies, 20(1), 1–13. https://doi.org/10.1186/s12906-019-2805-0
Steinbrenner, J. R., Hume, K., Odom, S. L., Morin, K. L., Nowell, S. W., Tomaszewski, B., Szendrey, S., McIntyre, N. S., Yücesoy-Özkan, S., & Savage, M. N. (2020). Evidence-Based Practices for Children, Youth, and Young Adults with Autism. FPG Child Development Institute.
Tekin-İftar, E. (2018). Özel eğitimde bilimsel-dayanaklı uygulamalar: Tarihçe, tanım ve öneriler [Evidence-based practices in special education: History, definition, and recommendations]. Araştırmadan Uygulamaya Özel Eğitim Dergisi, 1(1), 15–20.
Tekinarslan, İ. Ç., Arı, A., Bozak, B., Çay, E., & Çiçek, M. (2018). Special education teacher candidates’ views on evidence-based practices. Journal of Human Sciences, 15(3), 1756–1772. https://doi.org/10.14687/jhs.v15i3.5373
Travers, J. C. (2017). Evaluating claims to avoid pseudoscientific and unproven practices in special education. Intervention in School and Clinic, 52(4), 195–203. https://doi.org/10.1177/1053451216659466
Turkish Statistical Institute (2020). Turkey statistic for 2020. http://www.turkstat.gov.tr/PreTablo.do?alt_id=1002. Accessed 1 September 2021
Yıldırım, A., & Şimşek, H. (2016). Sosyal Bilimlerde Nitel Araştırma Yöntemleri [Qualitative Research in the Social Sciences]. Seçkin Press
Wong, H. H., & Smith, R. G. (2006). Patterns of complementary and alternative medical therapy use in children diagnosed with autism spectrum disorders. Journal of Autism and Developmental Disorders, 36(7), 901–909. https://doi.org/10.1007/s10803-006-0131-0
Wong, V. (2009). Use of complementary and alternative medicine (CAM) in autism spectrum disorder (ASD): Comparison of Chinese and western culture (Part A). Journal of Autism and Developmental Disorders, 39(3), 454–463. https://doi.org/10.1007/s10803-008-0644-9
World Health Organization. (2019). WHO global report on traditional and complementary medicine 2019. World Health Organization.
Acknowledgements
We wish to gratefully acknowledge assistance provided by Avsar Ardic and Muharrem Koc. We are also grateful to all the respondents who participated in the study.
Funding
No funding was received for conducting this study.
Correspondence concerning this article should be addressed to Dincer Saral, Hacettepe University, Beytepe Campus, Special Education Department, Ankara, Turkey, 06800. Electronic mail may be sent to [dincersaral@hacettepe.edu.tr].
Author information
Authors and Affiliations
Contributions
All authors contributed to the study conception and design. Material preparation and analyses were performed by Dincer Saral and Seray Olcay. Data collection was performed by all authors. The first draft of the manuscript was written by all authors and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.
Corresponding author
Ethics declarations
Compliance with Ethical Standards
None.
Conflict of Interest
The authors have no relevant financial or non-financial interests to disclose.
Ethical Approval
Approval was obtained from the ethics committee of Hacettepe University (Ethics approval number: 2020/20–40). All procedures performed in this study involving human participants were in accordance with the ethical standards of the institutional and/ or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Informed Consent
Informed consent was obtained from all parents included in the study.
Additional information
Publisher’s Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Rights and permissions
Springer Nature or its licensor holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.
About this article
Cite this article
Saral, D., Olcay, S. & Ozturk, H. Autism Spectrum Disorder: When There is no Cure, There are Countless of Treatments. J Autism Dev Disord 53, 4901–4916 (2023). https://doi.org/10.1007/s10803-022-05745-2
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10803-022-05745-2