Copyright By Christie M. Brewton April 2017 PARENTAL PERCEPTIONS OF THE CAUSE OF THEIR CHILD’S AUTISM SPECTRUM DISORDER: INFLUENCE ON TREATMENT A Dissertation Presented to the Faculty of the College of Education University of Houston In Partial Fulfillment of the Requirements for the Degree Doctor of Philosophy by Christie M. Brewton April 2017 PARENTAL PERCEPTIONS OF THE CAUSE OF THEIR CHILD’S AUTISM SPECTRUM DISORDER: INFLUENCE ON TREATMENT A Dissertation Defense for the Degree Doctor of Philosophy by Christie M. Brewton Approved by Dissertation Committee: ________________________________________ Dr. Sarah Mire, Chairperson ________________________________________ Dr. Milena Keller-Margulis, Committee Member ________________________________________ Dr. Tammy Tolar, Committee Member ________________________________________ Dr. Kimberly Schoger, Committee Member ________________________________________ Dr. Robin Kochel, Committee Member ________________________________________________ Dr. Robert McPherson, Dean College of Education April 2017 Acknowledgements Completion of this project would not have been possible without support from numerous individuals. First, I would like to thank my dissertation committee – a truly fantastic and collaborative team. The committee consisted of Dr. Mire, Dr. Kochel, Dr. Keller-Margulis, Dr. Tolar, and Dr. Schoger. Everyone on this team provided me with much needed support that helped this project come to fruition. Dr. Mire, my dissertation chair and academic/research mentor, empowered me throughout the final years of my graduate studies and created the foundation by which I was able to complete this project. I cannot express in enough depth how much her guidance and support lifted me up throughout the years. I would also like to thank those who participated in the focus group for the current study. Honorable mentions go out to Dr. Leandra Berry, Dr. Audrey Carson, Dr. Robin Kochel, and Dr. Alton Bozeman. Also, I feel as if I would not have survived this doctoral program without the love and support from my cohort and family. I was fortunate to have the best cohort a girl could have asked for – special thanks goes to Allison Dovi, Natalie Raff, Sarah Ochs, Erika Gonzalez, Brittany McLelland, and Elizabeth Allain for being sources of support, comic relief, and sounding boards as we crawled through the coursework, practicums, and milestones together. A very special mention to Allison Dovi, my best friend, partner in crime, and sister from another mister. I cannot fully explain how much our friendship means to me. We survived this process side by side the whole way and I am so excited for all the new adventures to come. Additionally, much love and thanks to my family. First, to my mom and dad, who could not have been more supportive and have always worked so hard to provide a comfortable and loving home for my brother and myself. Also, to my loving extended family: Janie Christ, Angie Costabile, Kyle and Heather Costabile, Glenn and Donna Morris, Clint Drake, and Morgan Lasala. My only regret through this whole process has been having to sacrifice spending more time with you all. Finally, to my loving, supportive, and all around rock star of a husband, Evan Morris. Thank you for always being there for me in every possible way imaginable. We tied the knot my third year in the program and our relationship is stronger now more than ever. I am so excited to move forward with you by my side. Of course, these acknowledgements cannot possibly encompass everyone who has touched my life in a positive way. This has been an incredible journey and I am constantly filled with gratitude towards those who inspired and encouraged me. Thank you all, truly. v PARENTAL PERCEPTIONS OF THE CAUSE OF THEIR CHILD’S AUTISM SPECTRUM DISORDER: INFLUENCE ON TREATMENT An Abstract of a Dissertation Presented to the Faculty of the College of Education University of Houston In Partial Fulfillment of the Requirements for the Degree Doctor of Philosophy by Christie M. Brewton April 2017 Abstract Background: Parents are largely responsible for selecting treatments for their children with autism spectrum disorder (ASD) and may choose treatments that lack research support. Recent research has focused on how parental perceptions about the cause of their child’s ASD may influence subsequent treatment choices, although further investigation is needed. Additionally, some research has demonstrated an association between (a) age and (b) onset type (i.e., presence of developmental regression) of an individual with ASD, and treatments pursued by parents. Purpose: The current study used a large sample of parents of children with ASD (n = 326) to examine whether parental perceptions of the cause of their child’s ASD influences frequency of current treatment choices overall and within created categories, with child age and onset type examined as potential moderators. Methods: A principal components analysis (PCA) was run on the Cause subscale of the IPQ-RA. A focus group was conducted to methodically determine how to group together numerous ASD treatments used in the current study. Poisson Regressions were run to determine relationships between causal factors and treatment selection. Results: Results from regression analyses revealed that several parental beliefs about cause of ASD (e.g., environmental risk factors, metaphysical factors) predicted an increase (or decrease) in the frequency of current parental treatment choices overall and within the evidence-based categories. Onset type was found to moderate these relationships in several instances, while child age had a lesser impact. Conclusion: Professionals who work with children with ASD and their families should collaborate and strive to understand the factors that drive parental treatment selection. Through understanding, professionals can approach the task of treatment planning with parents in a more informed manner and promote treatments that will have a positive and meaningful impact in the functioning of children with ASD. Keywords: Autism Spectrum Disorder, parental perceptions, etiology, IPQ-RA, treatment, onset type viii Table of Contents Chapter Page I. Introduction ..................................................................................................................... 1 II. Review of Literature ....................................................................................................... 3 Prevalence of ASD ...................................................................................................... 5 Hypotheses about Causes of ASD .............................................................................. 6 Parent-related characteristics and relationships ................................................... 7 Organic brain damage .......................................................................................... 8 Language and perceptual abnormalities ............................................................... 8 Differences in brain structure ............................................................................... 9 Exposure to environmental toxins ..................................................................... 10 Prenatal factors ................................................................................................... 13 Perinatal and neonatal factors ............................................................................ 15 Genetic factors ................................................................................................... 16 Impact of ASD on the Individual and Family ........................................................... 18 Treatments for ASD .................................................................................................. 21 Behavioral treatments ........................................................................................ 23 Developmental treatments ................................................................................. 27 Communication and speech treatments ............................................................. 27 Sensory and motor skill deficit treatments ......................................................... 29 Social skills treatments ...................................................................................... 29 Other/miscellaneous treatments ......................................................................... 30 Pharmaceutical treatments ................................................................................. 30 Complementary and alternative medical treatments .......................................... 31 Factors Affecting Parental Treatment Choices ......................................................... 33 Child-specific characteristics ............................................................................. 35 Parental Perceptions and Treatment Choices ............................................................ 36 Parental perceptions of cause and impact on treatment ..................................... 37 Leventhal’s Model of Illness Representation ........................................................... 39 Measuring Parental Perceptions ................................................................................ 41 Current Research Questions ...................................................................................... 44 III. Method ........................................................................................................................ 47 Participants