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DEFORMATION TO USERS This manuscript has been reproduced from the microfrhn master. UMI films the text directly firom the original or copy submitted. Thus, some thesis and dissertation copies are in typewriter face, while others may be from any type of computer printer. The quality of this reproduction is dependent upon the quality of the copy submitted. Broken or indistinct print, colored or poor quality illustrations and photographs, print bleedthrough, substandard marginc^ and inq)roper alignment can adversety affect reproduction. In the unlikely event that the author did not send UMI a complete manuscript and there are missing pages, these will be noted. Also, if unauthorized copyright material had to be removed, a note wiD indicate the deletion. Oversize materials (e.g., maps, drawings, charts) are reproduced by sectioning the original, begmning at the upper left-hand corner and continuing from left to right in equal sections withsmall overl^s. Each original is also photographed in one exposure and is included in reduced form at the back of the book. Photogr^hs included in the original manuscript have been reproduced xerographically in this copy. Higher quality 6" x 9" black and white photographic prints are available for ary photographs or illustrations appearing in this copy for an additional charge. Contact UMI directty to order. UMI A Bell & Howell Information Company 300 North Z eeb Road. Ann Arbor. Ml 48106-1346 USA 313.'761-4700 800/521-0600 Understanding "El autismo" ; A qualitative study of the parental interpretation of autism: A Hispanic perspective Dissertation Presented in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy in the Graduate School of The Ohio State University By Claudia Lucia Moreno, B.A., M.S.W. ****** The Ohio State University 1995 Dissertation Committee: Approved by James E. Lantz Virginia Richardson Henry Leland Adviser Allege of Social Work OMI Number: 9544647 Copyright 1995 by Moreno, Claudia Lucia All rights reserved. OMI Microform 9544647 Copyright 1995, by UMI Company. All rights reserved. This microform edition is protected against unauthorized copying under Title 17, United States Code. UMI 300 North Zeeb Road Ann Arbor, MI 48103 Copyright by Claudia L. Moreno 1995 To my mother and father: Imelda and Jorge To Joe D. who made it meaningftil "the wind beneath my wings". To the ten parents of children with autism: their voices will always be here! 11 ACKNOWLEDGEMENTS My deepest appreciation to my committee members who took me through the path and always stood by me. Dr. Lantz, my advisor who always gave me his time and was extremely supportive from the beginning. His knowledge, experience and understanding made it possible. To Dr. Leland whose brilliant mind always shared with me and took me through roads never traveled before. To Dr. Richardson who made distance only a keyboard away and gave me good insights and inspiration. To all my professors who from grammar school until now cultivated in me the gift of education and the yearning for knowledge. To the parents who participated in this research, when I sat to listen to their stories, I traveled and dreamed with them. I admire the way these parents rebuilt their life out of broken wings. They gave their own commitment to mend those wings to fly and always found hope. Thank you for taking the resolution to confess your journey with autism. My thanks go to the Council of Social Work Education (CSWE) National Institute of Mental Helath (NIMH) and to the College of Social Work at The Ohio State University for their financial support to complete this project. iii Thanks to Dr. Sophie Pierog for her initial assistance and for proving me the entrance to the Hospital. Thanks to all the staff who work there and who dedicate their time to the care of handicapped children and their families. Thank you for your help and for making me feel at home. I am grateful to all those who offered their assistance one way or the other in this project. To Linda Grabner for her wonderful translations and insights. To Oscar Cuyubamba for his translations. To Sharyn Talbert for the edition of this manuscript. To Stephanie Bruzuzy for her initial revisions. To my peer debriefer, dear friend and mentor; Donna Catlaw. To Ana Soto for her feedback about Hispanic families. To Dario and Costi who stood with me with good "arepas y chocolate" and their unconditional friendship. To the aerobic classes that helped me to reduce stress. To Joe D. goes my love and appreciation for being there when I needed him and never made me travel this road alone; your legacy will always live! Thanks go to my parents whose love and support have always been unlimited. To my brothers and sisters who believed in me. Thanks to so many friends and "amigos" whose names remain in my heart. And overall, thanks be to God for everything. Gracias! iv VITA January 28, 1962 ................................ Bom, Paz del Rio, Boyaca - Colombia 1982 ..........................................................Intern (WX-TV Channel 41), Secaucus, New Jersey. 1983-1984 ............................................... Research Assistant, Hispanic Research Center, Fordham University, Bronx, New York. 1984-1987 ............................................... Intake Coordinator, Rose Gross Children's Center, Jewish Home & Rehabilitation Center of NJ, Jersey City, New Jersey. 1985 ..........................................................B.A., Montclair State College, Upper Montclair, New Jersey. 1987-1989 ............................................... Clinical Coordinator, Rose Gross Children's Center, Jewish Home and Rehabilitation Home of NJ, Jersey City, New Jersey. 1989 ..........................................................M .S.W ., Rutgers, The State University of New Jersey, New Bmnswick, New Jersey. 1990-1991 ............................................... Patient Management Coordinator, Children's Center for Special Needs, Jersey City, Jersey City, New Jersey. 1991.........................................................Consultant (Psychotherapist), Mount Carmel Guild, Community Mental Health Center, Jersey City, New Jersey. 1993-1994 .............................................. Graduate Teaching Assistant, The Ohio State University, College of Social Work, Columbus, Ohio. 1994 ..................................................... Research Assistant, The Ohio State University, Hispanic Oversight Committee, Office of Academic Affairs, Columbus, Ohio. 1994- Present.................................... Grant Reviewer, Administration for Children, Youth and Families (ACYF), U.S. Department of Health and Human Services, Washington, D C. 1995-Presen t ......................................... Instructor, Columbia University, School of Social Work, New York. FIELD OF STUDY Major: Social Work Advisor: James E. Lantz Concentration: Developmental Disabilities VI LIST OF TABLES TABLE PAGE 1. Main Themes 64 2. Demographic characteristics of the parents 68 3. Demographic characteristics of the children 68 Vll TABLE OF CONTENTS DEDICATION......................................................................... ii ACKNOWLEDGEMENTS................................................. iii VITA ........................................................................................ V LIST OF TABLES................................................................. vii CHAPTER I: Page STATEMENT OF THE PROBLEM Introduction ................................................................. 1 Statement of the P roblem ...................................... 2 Significance of the Problem ...................................... 4 Purpose of the S tu d y ................................................. 5 Implications of this Study for Social W o r k ............... 5 CHAPTER H; REVIEW OF THE LITERATURE Introduction ................................................................. 8 Emergence of Autism as a L abel ................................. 8 Autism Prior to K aim er .................................. 9 Philosophical Influences of Kanner's W ork ................................................. 10 Theories of Causation .................................................. 11 The Nurture Polemic .......................................... 11 The Nature Polemic .......................................... 15 Autism as a Diagnostic Category ............................... 17 v iii Kanner's Initial Description: Autism or Schizophrenia?............................... 17 Diagnostic Classification of Autism ............................... 19 Is autism a Pervasive Developmental Disorder?............................................................. 23 The impact on Parents of children with Autism . 24 Is the Impact of Autism on the Parents the Same than any other Disability? ....................... 27 Autism in other Cultures ................................. 29 Hispanics and autism.......................................... 35 CHAPTER III: METHODOLOGY Introduction ...................................................... 37 Rationale for Naturalistic Approach to Inquiry . 37 Implications for Social Work Practice............ 38 Design: Emergent Design .............................................. 39 F o c u s ............................................................... 40 Gaining E n try ................................................................. 41 The Setting of Study ...................................................... 42 Sample and Population.................................................
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