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Documenting and Understanding Parent’s Intervention Choices for Their Child with Autism Spectrum Disorder

  • S.I. : Parenting Children with ASD
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Abstract

Understanding why parents choose some interventions but not others for their child with autism is important for a number of reasons. Estimating the proportion of evidence-based interventions engaged, identifying the agencies influencing parental decisions, and elucidating the barriers or reasons leading to intervention rejection or discontinuation can result in better service provision. New Zealand parents (n = 570) of a child with autism reported what interventions were being engaged, and why some interventions were engaged but not others. Funding was a major determinant of intervention engagement, while medical professionals exerted the most influence. Sources of support were not related to intervention engagement, but parental perceptions of their child’s symptom severity were. Finally, non-engagement does not necessarily reflect parental opposition to an intervention, but rather the existence of barriers.

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References

  • Barak-Levy, Y., & Atzaba-Poria, N. (2013). Paternal versus maternal coping styles with child diagnosis of developmental delay. Research in Developmental Disabilities, 34(6), 2040–2046.

    Article  PubMed  Google Scholar 

  • Bowker, A., D’Angelo, N. M., Hicks, R., & Wells, K. (2011). Interventions for autism: Parental choices and perceptions of change. Journal of Autism and Developmental Disorders, 41, 1373–1382.

    Article  PubMed  Google Scholar 

  • Call, N. A., Delfs, C. H., & Reavis, A. R. (2015). Factors influencing treatment decisions by parents for their children with autism spectrum disorder. Research in Autism Spectrum Disorders, 15, 10–20.

    Article  Google Scholar 

  • 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, 369–381.

    Article  Google Scholar 

  • 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, 285–305.

    Article  Google Scholar 

  • 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 Education, 38(1), 63–90.

    Article  Google Scholar 

  • Christon, L. M., Mackintosh, V. H., & Myers, B. J. (2010). Use of complementary and alternative medicine (CAM) interventions by parents of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 4, 249–259.

    Article  Google Scholar 

  • Cohen, S., Mermelstein, R., Kamarck, T., & Hoberman, H. (1984). Measuring the functional components of social support. In I. G. Sarason & B. R. Sarason (Eds.), Social support: Theory, research and applications (pp. 73–94). The Hague: Martinus Nijhoff.

    Google Scholar 

  • Deyro, M. C., Simon, E. W., & Guay, J. (2016). Parental awareness of empirically established treatments for autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 3(3), 184–195.

    Article  Google Scholar 

  • Ekas, N. V., Lickenbrock, D. M., & Whitman, T. L. (2010). Optimism, social support, and well-being in mothers of children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 40, 1274–1284.

    Article  PubMed  Google Scholar 

  • Elder, J. H. (1994). Beliefs held by parents of autistic children. Journal of Child and Adolescent Psychiatric Nursing, 7, 9–16.

    Article  PubMed  Google Scholar 

  • Foxx, R. M., & Mulick, J. A. (2015). Controversial therapies for autism and intellectual disabilities (2nd edn.). New York: Taylor and Francis.

    Google Scholar 

  • 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, 195–209.

    Article  Google Scholar 

  • Goin-Kochel, R. P., Mackintosh, V. H., & Myers, B. J. (2009). Parental reports on the efficacy of interventions and therapies for their children with autism spectrum disorders. Research in Autism Spectrum Disorders, 3, 528–537.

    Article  Google Scholar 

  • Green, V. A. (2007). Parental experience with interventions for autism. Journal of Developmental Physical Disabilities, 19, 91–101.

    Article  Google Scholar 

  • Green, V. A., Pituch, K. A., Itchon, J., Choi, A., O’Reily, M., & Sigafoos, J. (2006). Internet survey of interventions used by parents of children with autism. Research in Developmental Disabilities, 27, 70–84.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • Hebert, E. B. (2014). Factors affecting parental decision-making regarding iInterventions for their child with autism. Focus on Autism and Other Developmental Disabilities, 29(2), 111–124.

    Article  Google Scholar 

  • Kanne, S. M., Mazurek, M. O., Sikora, D., Bellando, J., Branum-Martin, L., Handen, B., … Warren, Z. (2014). The autism impact measure (AIM): Initial development of a new tool for treatment outcome measurement. Journal of Autism and Developmental Disorders, 44, 168–179.

    Article  PubMed  Google Scholar 

  • Keenan, M., Dillenburger, K., Röttgers, H. R., et al. (2015). Autism and ABA: The gulf between North America and Europe. Review Journal of Autism and Developmental Disorders, 2(2), 167–183.

    Article  Google Scholar 

  • Levy, S. E., & Hyman, S. L. (2002). Alternative/complementary approaches to intervention of children with autism spectrum disorders. Infants and Young Children, 14, 33–42.

    Article  Google Scholar 

  • Ludlow, A., Skelly, C., & Rohleder, P. (2011). Challenges faced by parents of children diagnosed with autism spectrum disorder. Journal of Health Psychology, 17(5), 702–711.

    Article  PubMed  Google Scholar 

  • Lutz, H. R., Patterson, B. J., & Klein, J. (2012). Coping with autism: A journey toward adaptation. Journal of Pediatric Nursing, 27(3), 206–213.

    Article  PubMed  Google Scholar 

  • Mak, W. W. S., & Kwok, Y. T. Y. (2010). Internalization of stigma for parents of children with autism spectrum disorder in Hong Kong. Social Science Medicine, 70(12), 2045–2051.

    Article  PubMed  Google Scholar 

  • Matson, J. L., & Wiliams, L. W. (2015). The curious selection process of treatments for autism spectrum disorders. Research in Autism Spectrum Disorders, 9, 21–25.

    Article  Google Scholar 

  • 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, 87–95.

    Article  Google Scholar 

  • Ministries of Health and Education. (2008). New Zealand autism spectrum disorder guideline. New Zealand: Wellington.

    Google Scholar 

  • Montes, G., & Cianca, M. (2014). Family burden of raising a child with ASD. In V. B. Patel, V. R. Preedy & C. R. Martin (Eds.), Comprehensive guide to autism (pp. 167–184). New York: Springer.

    Chapter  Google Scholar 

  • Murphy, N. A., Christia, B., Caplin, D. A., & Young, P. C. (2006). The health of caregivers for children with disabilities: Caregiver perspectives. Child: Care, Health and Development, 33(2), 180–187.

    Google Scholar 

  • O’Keefe, M., & Coat, S. (2010). Increasing health-care options: The perspective of parents who use complementary and alternative medicines. Journal of Paediatrics and Child Health 46, 296–300.

    Article  PubMed  Google Scholar 

  • Plant, K. M., & Sanders, M. R. (2007). Predictors of care-giver stress in families of preschool-aged children with developmental disabilities. Journal of Intellectual Disability Research, 51(2), 109–124.

    Article  PubMed  Google Scholar 

  • Pozo, P., & Sarriá, E. (2014). Prediction of Stress in mothers of children with autism spectrum disorders. Spanish Journal of Psychology, 17, 1–12.

    Article  Google Scholar 

  • Romanczyk, R. G., & Gillis, J. M. (2005). Intervention approaches for autism: Evaluating options and making informed choices. In D. Zager (Ed.), Autism spectrum disorders: Identification, education, and intervention (3rd edn., pp. 515–535). Mahwah, NJ: Lawrence Erlbaum.

    Google Scholar 

  • Searing, B. M. J., Graham, F., & Grainger, R. (2015). Support needs of families living with children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 45(11), 3693–3702.

    Article  PubMed  Google Scholar 

  • Shepherd, D., Landon, J., & Goedeke, S. (2017). Symptom severity, caregiver stress, and intervention helpfulness assessed using ratings from parents caring for a child with autism. Autism. https://doi.org/10.1177/1362361316688869.

    PubMed  Google Scholar 

  • Shyu, Y. I. L., Tsai, J. L., & Tsai, W. C. (2010). Explaining and selecting interventions for autism: Parental explanatory models in Taiwan. Journal of Autism and Developmental Disorders, 40, 1323–1331.

    Article  PubMed  Google Scholar 

  • Smith, T., & Antolovich, M. (2000). Parental perceptions of supplemental interventions received by young children with autism in intensive behavior analytic treatment. Behavioral Interventions, 15, 83–97.

    Article  Google Scholar 

  • Stephenson, J., Cater, M., & Kemp, C. (2012). Quality of the information on educational and therapy interventions provided on the web sites of national autism associations. Research in Autism Spectrum Disorders, 6, 11–18.

    Article  Google Scholar 

  • Unigwe, S., Buckley, C., Crane, L., Kenny, L., Remington, A., & Pellicano, E. (2017). GPs’ confidence in caring for their patients on the autism spectrum: An online self-report study. British Journal of General Practice. https://doi.org/10.3399/bjgp17X690449.

    PubMed  Google Scholar 

  • Valentine, K. (2010). A consideration of medicalisation: Choice, engagement and other responsibilities of parents of children with autism spectrum disorder. Social Science and Medicine, 71, 950–957.

    Article  PubMed  Google Scholar 

  • Warren, Z., McPheeters, M. L., Sathe, N., Foss-Feig, J. F., Glasser, A., & Veenstra-VanderWeele, J. (2011). A systematic review of early intensive intervention for autism spectrum disorders. Pediatrics, 127, e1303–e1311.

    Article  PubMed  Google Scholar 

  • Zablotsky, B., Bradshaw, C. P., & Stuart, E. A. (2013). The association between bullying and the psychological functioning of children with autism spectrum disorders. Journal of Developmental and Behavioral Pediatrics, 34(1), 1–8.

    Article  PubMed  Google Scholar 

  • Zaidman-Zait, A., Mirenda, P., Duku, E., Vaillancourt, T., Smith, I. M., Szatmari, P., Bryson, S., Fombonne, E., Volden, J., Waddell, C., Zwaigenbaum, L., Georgiades, S., Bennett, T., Elsabaggh, M., & Thompson, A. (2016). Impact of personal and social resources on parenting stress in mothers of children with autism spectrum disorder. Autism, 21(2), 155–166.

    Article  PubMed  Google Scholar 

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Acknowledgments

We thank the participants for generously giving up their time to respond to this survey. We also thank Autism New Zealand for supporting the recruitment of participants, and for their ‘consumer perspective’ review of early drafts of the survey.

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Contributions

DS, JL and SG conceptualized the study. RC and KT dsigned the study and collected the data. DS drafted the manuscript carried out the analyses. All authors reviewed the manuscript critically, and approved the final version.

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Correspondence to Daniel Shepherd.

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Shepherd, D., Csako, R., Landon, J. et al. Documenting and Understanding Parent’s Intervention Choices for Their Child with Autism Spectrum Disorder. J Autism Dev Disord 48, 988–1001 (2018). https://doi.org/10.1007/s10803-017-3395-7

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  • DOI: https://doi.org/10.1007/s10803-017-3395-7

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