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A Qualitative Study of Indian Mothers and Their Perceptions of Autism

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A Qualitative Study of Indian Mothers and Their Perceptions of Autism Philadelphia College of Osteopathic Medicine DigitalCommons@PCOM PCOM Psychology Dissertations Student Dissertations, Theses and Papers 2011 Through Our Eyes: A Qualitative Study of Indian Mothers and Their eP rceptions of Autism Jessy Sara Jacob Pathappillil Philadelphia College of Osteopathic Medicine, [email protected] Follow this and additional works at: http://digitalcommons.pcom.edu/psychology_dissertations Recommended Citation Pathappillil, Jessy Sara Jacob, "Through Our Eyes: A Qualitative Study of Indian Mothers and Their eP rceptions of Autism" (2011). PCOM Psychology Dissertations. Paper 195. This Dissertation is brought to you for free and open access by the Student Dissertations, Theses and Papers at DigitalCommons@PCOM. It has been accepted for inclusion in PCOM Psychology Dissertations by an authorized administrator of DigitalCommons@PCOM. For more information, please contact [email protected]. Philadelphia College of Osteopathic Medicine Department of Psychology THROUGH OUR EYES: A QUALITATIVE STUDY ON INDIAN MOTHERS AND THEIR PERCEPTIONS OF AUTISM By Jessy Sara Jacob Pathappillil Submitted in Partial Fulfillment of the Requirements of the Degree of Doctor of Psychology July 2011 INDIAN MOTHERS ii Philadelphia College of Osteopathic Medicine Department of Psychology Dissertation Approval This is to certify that the thesis presented to us by Jessy Sara Jacob Pathappillil on the 17th day of May, 2011, in partial fulfillment of the requirements for the degree of Doctor of Psychology, has been examined and is acceptable in both scholarship and literary quality. Committee Members‟ Signatures: Rosemary Mennuti, Ed.D., Chairperson Yuma I. Tomes, Ph.D. Emily Chernicoff, Psy.D. Robert A. DiTomasso, Ph.D., ABPP, Chair, Department of Psychology INDIAN MOTHERS iii Acknowledgements I would like to take this opportunity to express my sincere gratitude to everyone who encouraged and supported me through the journey of completing this dissertation. It has truly been quite a journey! First and foremost, I thank God for the innumerable and abundant blessings that He has showered upon me. Also, this study would not have even been possible without the brave mothers of this study who were willing to come forward and let their voices be heard. I thank them for giving me the esteemed honor of sharing their stories. I would also like to extend heartfelt gratitude to the members of my dissertation committee for their continuous guidance, expertise, and wisdom. Dr. Mennuti‟s support and encouragement is what provided me the confidence to continue in the right direction. Her nurturance was always a calming factor during frantic and stressful periods. Dr. Yuma I. Tomes and Dr. Emily Chernicoff‟s support, willingness to read and re-read my dissertation several times and providing me with insightful feedback is greatly appreciated. The ideas and participation of Dr. Emily Chernicoff, Dr. Lucilia Hernandez and Dr. Anice Thomas as members of my validation team were of great value to this study and very much appreciated. Thank you for taking the time out of your own busy schedules to help me. INDIAN MOTHERS iv Finally, and most importantly, I would like to thank my amazing family for their unconditional love and unwavering support. To my wonderful husband, Jobin, words cannot express the love that I have for you. We have been through so many challenging and difficult times. You have truly been my strength when I was weak, my courage when I was scared and my hope when I felt hopeless. Despite everything, you never once allowed my educational aspirations to falter, but rather my goals became our goals. I looked forward to accomplishing many, many more goals with you! To my three incredible children – Anjali, Xavier and Liya, the three of you have made me truly understand what it means to be a mother. The experience of being your mother is the inspiration for this study. When my journey at Philadelphia College of Osteopathic Medicine began, I was a young married woman and now I am the blessed mother to the three of you. Each of you has literally sat with me during classes – invisible to others, but you made your presence known to me! The three of you have accompanied me throughout this entire process. It was your smiles, tears and laughter that constantly put things into perspective for me! You have made me realize that the most important job that I will ever have is being your mother! INDIAN MOTHERS v Abstract This qualitative study focuses on the awareness and perceptions of autism among Indian mothers residing in the United States. Through a semi-structure interview, the author examined the responses of Indian mothers regarding what life would be like for an Indian mother who has a child with autism. The results indicated that there continues to be a lack of awareness regarding autism because of the high levels of stigma associated with any form of mental illness. Mothers felt that the lives of an Indian mother and her child who has autism would be difficult because of complex cultural expectations and traditions. In addition, the lack of awareness and acceptance ultimately results in the child not gaining the appropriate access to crucial early interventions and to social interactions that are needed in order to achieve his or her maximum potential in life. INDIAN MOTHERS vi Table of Contents Chapter 1 – Introduction………..…………………………………………..……………..1 Statement of the Problem ………………..…………………………..…………....1 Purpose of the Study………………………………..……………………..……....3 Defining Autism: the Concept of Autism and a Brief History.…..……..………...4 What is Autism?.....…………………………………………………...…...4 Diagnostic Criteria for Autism …………………………………………....6 Communication……………………………………….……….......7 Repetitive Behaviors……………………………………….……...8 Sensory Issues……………………………………………………..9 Motor Difficulties…………………………………………………9 Other Symptoms…………………………………………..……..10 Etiology of Autism………………………………………………………..……...10 Pathophysiology………………………………………………………………….12 Diagnosis…………………………………………………………………………13 Cross-cultural identification of autism……………………………….......14 Prognosis…………………………………………………………………………15 Epidemiology…………………………………………………………………….17 Cross Cultural Perspective of Autism……………………………………………17 Concept of Culture……………………………………………………………….19 What is Culture?........................................................................................19 Concept of Asian Indian Culture………………………………………………...20 Brief History of India……………………………………………………20 Religions in India………………………………………………………..22 Languages in India……………………………………………………....23 INDIAN MOTHERS vii Family Life in India………………………………………………….......24 Child Rearing Practices…………………………………………………..25 Indian Immigrants in America…………………………………………...26 Perceived Stigma of Mental Disorders and Concept of Karma in the Indian Population………………………………………………………………………..28 Stigma……………………………………………………………………28 Karma…………………………………………………………………….29 Autism in India…………………………………………………………………..30 Awareness and Concept of Illness………………………………….........32 Help-Seeking Behavior…………………………………………………..33 Treatment………………………………………………………………...34 Community and Legal Issues……………………………………….........35 Family Functioning………………………………………………………35 Roles of the mother………………………………………………36 Chapter Two – Methods…………………………………………………………….........40 Participants……………………………………………………………….............30 Overview of Research Design……………………….………………...………...41 Measures……………………………………………………………........42 Procedures……………………………………………………………………….43 Data Analysis……………………………………………………………….........45 Chapter Three – Results…………………………………………………………….........48 Data Sources and Collection……………………………………………………..48 Data Analysis and Interpretation………………………………………………...49 Findings………………………………………………………………….............49 Discussion of Findings…………………………………………………..50 INDIAN MOTHERS viii Demographic Findings…………………………………………………...50 Descriptive Findings………………………………………………..........52 Motherhood in General……………………………………..........53 Personal Experiences in Motherhood……………………………54 Motherhood as an Indian Woman…………………………..........58 Passing of Culture and Tradition………………………...58 Division of Duties………………………………………..59 Concept of “We”…………………………………………61 Awareness of Indian Children with Autism……………………...64 Direct vs. Indirect Exposure to Indian Children with Autism…………………………………………………....64 Societal Awareness………………………………………66 Acceptance of Autism within the Indian Society………………..68 Generational Differences in Acceptance………………...70 Resistance to Seek Help………………………………………….71 Denial or Resistance to Admit…………………………...72 Shame…………………………………………………….75 Family Image…………………………………………….75 Social/Cultural Stigma…………………………………...77 Life for an Indian Mother who has a Child with Autism………..78 Personal Experience………………………………….......79 Difficulty and Struggles that Both Mother and Child Face……………………………………………………...81 Social Isolation…………………………………………..82 Social Comparison……………………………………….83 Marital Discord…………………………………………..86 INDIAN MOTHERS ix Familial Reactions and Interactions…………………...…89 Etiology of Autism……………………………………………….90 Vaccinations……………………………………………...90 Biological/Genetic Factors……………………………….92 Irrelevance of Causation…………………………………93 Notion of Karma…………………………………………94 Placing Blame……………………………………………97 Moving Forward………………………………………………..100 Increasing Tolerance and Acceptance………………….100 Providing Support to Mothers…………………………..102 Summary of Descriptive Findings……………………………...104 Chapter Four – Discussion……………………………………………………………...106 Coping with a Diagnosis of Autism…………………………………………….117 Ushering Indian Families into the Process of Receiving
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