Parental Reports of the Development of Autism in Their Children: the Relevance of Regression, Comorbidity, and Genetics in the Detection Ofearly Characteristics
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Virginia Commonwealth University VCU Scholars Compass Theses and Dissertations Graduate School 2003 Parental Reports of the Development of Autism in Their Children: The Relevance of Regression, Comorbidity, and Genetics in the Detection ofEarly Characteristics Robin Page Goin Virginia Commonwealth University Follow this and additional works at: https://scholarscompass.vcu.edu/etd Part of the Psychology Commons © The Author Downloaded from https://scholarscompass.vcu.edu/etd/1076 This Dissertation is brought to you for free and open access by the Graduate School at VCU Scholars Compass. It has been accepted for inclusion in Theses and Dissertations by an authorized administrator of VCU Scholars Compass. For more information, please contact [email protected]. College of Humanities and Sciences Virginia Commonwealth University This is to certify that the dissertation prepared by Robin P. Goin entitled Parental Reports of the Development of Autism in Their Children: The Relevance of Regression, Comorbidity, and Genetics in the Detection of Early Characteristics has been approved by her committee as satisfactory completion of the dissertation requirement for the degree of Doctor of Philosophy. ________________________________________________________________________ Barbara J. Myers, Ph.D., Director of Dissertation Department of Psychology ________________________________________________________________________ Pamela W. Garner, Ph.D., Committee Member Department of Psychology ________________________________________________________________________ Clarissa S. Holmes, Ph.D., Committee Member Department of Psychology ________________________________________________________________________ Donald Oswald, Ph.D., Committee Member Department of Psychiatry ________________________________________________________________________ Jane I. Carlson, Ph.D., Committee Member Department of Psychiatry ________________________________________________________________________ Laura E. Plybon, Ph.D., Committee Member Department of Psychology ________________________________________________________________________ Donelson R. Forsyth, Ph.D., Director of Graduate Studies ________________________________________________________________________ Stephen D. Gottfredson, Ph.D., Dean, College of Humanities and Sciences ________________________________________________________________________ F. Douglas Boudinot, Ph.D., Dean, School of Graduate Studies ________________________________________________________________________ Date © Robin P. Goin, 2003 All Rights Reserved Parental Reports of the Development of Autism in Their Children: The Relevance of Regression, Comorbidity, and Genetics in the Detection of Early Characteristics A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy at Virginia Commonwealth University. by Robin P. Goin Master of Science, The University of Tennessee, Knoxville, May 2000 Bachelor of Arts, Texas Woman’s University, December 1995 Director: Barbara J. Myers, Ph.D. Associate Professor, Department of Psychology Virginia Commonwealth University Richmond, Virginia May, 2003 ii Acknowledgments First and foremost, I would like to thank my advisor and dissertation chair, Dr. Barbara Myers, not only for her contributions to this research project but for the outstanding mentorship that she has provided me and many other fortunate students. From the beginning of my academic career at VCU, she has been nothing but thoughtful, available, resourceful, supportive, encouraging, concerned, and entertaining. It is no wonder that she has earned the title of “mother hen” amongst her advisees. Barbara has always known both when to trust my independence and when to step in when I am lost; for that, I am expressly grateful, as it has truly fostered my professional growth. I would also like to thank my committee members, Dr. Donald Oswald, Dr. Pamela Garner, Dr. Clarissa Holmes, Dr. Jane Carlson, and Dr. Laura Plybon, for their alternative ideas and explanations, which have undoubtedly augmented this work, and for their timely flexibility. I also must add my appreciation for my boss and mentor at the Autism Registry, Dr. Robert Cohen, who has encouraged my thinking and growth in new directions as well as my love for writing. Secondly, I express gratitude toward the families who participated in this project. They have unselfishly shared their stories about their children with autism, hoping that their experiences may be helpful to others in similar situations. We cannot begin to understand this disorder without their unique perspectives and cooperation; I only hope that I do them justice both in this work and in future endeavors, as I am constantly amazed by their bravery, persistence, and faith. I am also thankful for my own family, both immediate and extended, who have been my most staunch supporters. From the time that I began school at age 3 until now, when I am 30, my parents, Jim and Angie, have fostered my goals without clouding them with their own desires for me. They have been incessantly curious about and encouraging of the directions I have taken. I am proud of their trust and belief in me, and, as I have said before, any courage that I may possess is born of their confidence in me. My sister, Randi, the dearest thing to my heart, has been my long-distance confidant. While I am so thankful for the many ways in which we connect, in light of this project, I feel especially glad that we both understand and enjoy very special children. Furthermore, I have been blessed with grandparents, aunts, uncles, and more cousins than I can count who have done nothing but love and cheer me on during my education away from home. They have supported me financially, emotionally, made sure that I had means home for the holidays, and even attended conferences with me. I am proud that I belong to them and that they belong to me; I love them all more than I have words to express. Additionally, I am wholeheartedly grateful for the friends and colleagues who have contributed either directly or indirectly to my progress in the program and this iii project. Heather, Kelli, and Kristine—you have always been there exactly as you said you would and as I needed you to be, performing a variety of professional and extracurricular roles, and I thank you for keeping my spirits on a perpetual high. I am also grateful to my friends at C.D. who have provided many a laugh, libation, and night of much-needed respite. Believe it or not, you, too, have contributed to my progress by helping to maintain my sanity. Finally, I would like to thank the many people who offered a myriad of unique assistance with this project—Brian for his web-building skills and patience with my endless questions and changes, Jessie for her knowledge of statistics and data-cleaning, David for organizing my online-data collection and for his patience with my infinite questions, the College of Humanities and Sciences’ IT guys (whom I affectionately refer to as the “computer gurus”) for helping me in many a technological pinch, Larry for his informational contributions in support of my desire to do online research, Jason for his knowledge of computer contacts on campus, and the folks at Alphagraphics, who clearly understood an emergency situation, for their professionalism and quality of product. I am very aware as I close this section that this work has been a group project in the truest sense of the concept. I could not have done this alone, and it would not be the same piece without the contributions and influences of all of the aforementioned parties. Thank you all. iv Table of Contents Page Acknowledgement .............................................................................................................. ii List of Tables .................................................................................................................... vii Abstract.............................................................................................................................. ix Chapter 1 Introduction........................................................................................................1 Incidence of Autism ......................................................................................2 Cultural and Family Influences on Autism ...................................................5 Earlier View That Autism Differed Across Racial and Economic Groups .....................................................................................................5 Cultural and Economic Concerns That Remain Relevant.......................7 Parents’ Construction of Beliefs About Their Children................................9 2 Review of the Literature ..................................................................................13 Value of Early Detection and Diagnosis .....................................................13 Research on Autism-Spectrum Traits in Infancy and Toddlerhood............15 Family Home Videos.............................................................................20 Early Screening Devices .......................................................................24 Parent Reports .......................................................................................29 Factors Influencing Early Detection............................................................34 v Autistic Regression................................................................................34 Comorbidity...........................................................................................37