AN INVESTIGATION INTO THE COPING RESOURCES OF PARENTS WITH AUTISTIC CHILDREN. BIANCA KATZ A dissertation submitted to the School of Psychology, University of the Witwatersrand, Johannesburg, in partial fulfillment of the requirements of the Degree of Bachelor of Arts with Masters. October 2005 They think I?m perfect when they see me. I cry on cue. I move my arms and legs. My fingers and toes both add up to ten. Their specialists tick all the columns on their rating scale. They won?t find out. None of the tests they run will show my secret. My subtle imperfection will complicate the lives of everyone who loves me. From Kaleidoscope By Barbara Erasmus ABSTRACT The diagnosis of a serious disability brings many changes to the family of the newly diagnosed member. Each type of disability and each child is unique. The characteristics of autism make raising an autistic child challenging and places great stress on the family. The diagnosis of autism therefore presents the family with a great deal of unique challenges. Coping is necessary for the maintenance of the family and for the quality of life to remain intact for the individual family members. Traditionally the emphasis has been on treating the autistic child. However, recently more attention has been devoted to providing supportive and counselling services to the families of autistic children. Research has shifted its focus towards identifying those resources that enable the family to cope successfully in the face of chronic stress. The present study used the process model of stress and coping (Folkman & Lazarus , 1984) to examine the variables that may alleviate parental stress. These variables include both personal and socio-ecological coping resources, for example, personality variables, parenting skills, previous coping skills, social support and support from formal agencies. The sample selected consisted of 31 parents of autistic children. The parent s were recruited through schools that cater specifically to autistic children and the parents were all volunteer participants. The results indicated that intervention and parent education levels are associated with the level of stress experienced by parents of autistic children. These results highlight the need for family-based intervention programmes that are specifically tailored to suit the needs of the family being helped. Without adequate se rvices, it is unlikely that any amount of psychosocial support will be able to prevent family stress. DECLARATION I hereby declare that this dissertation is my own work, and has not been submitted to any other institution in fulfillment of any other degree. ________________________ ___________________ Bianca Katz Date ACKNOWLEDGEMENTS I would like to thank the following people for their contributions towards this research: Megan Hooper for her encouragemen t, support and valuable help, Sumaya Laher and Lauren Singer for their assistance with my statistical analysis and interpretation of the results, All the parents who took the time to answer the questionnaires and support my research, The principals at The Key school, and Unica for supporting my research and giving me permission to send out questionnaires, And finally to Greg Cohen for his support, patience and love. TABLE OF CONTENTS Page Abstract Declaration Acknowledgements Table of contents List of tables Chapter one: Introduction 1 Chapter two: Literature Review 1. Autism: An overview 4 1.1 Kanner?s infantile autism 4 1.2 The autistic spectrum 6 1.3 Subgroups of autistic individuals 8 1.3.1 The aloof group 8 1.3.2 The passive group 9 1.3.3 The active but odd group 9 1.3.4 The loners 10 1.4 Diagnosis of autistic disorder 11 1.5 Causes of autistic disorder 13 1.6 Education, management and treatment 16 2. Autism and the family 18 2.1 Child effects on the parents 18 2.1.1 Social and emotional functioning of parents 20 2.1.2 Marital relationship of parents 26 2.2 Child effects on siblings 27 3. Stress 29 4. Coping resources 33 5. Coping resources and su ccessful adaptation 35 5.1 Personal coping resources 36 5.2 Socio-ecological resources 38 6. Implications for intervention 43 7. Conclusion 45 8. Rationale 47 9. Research questions 48 10. Hypotheses 48 Chapter three: Methods 1. Research design 49 2. Sample 51 3. Materials 52 3.1 Biographical questionnaire 52 3.2 The Coping Resources Inventory 53 4. Procedure 56 5. Ethical issues 57 Chapter four: Results 1. Descriptive statistics 58 2. Descriptive statistics of the CRI scales 62 3. Males and females use different coping resources 64 4. What are the mediating variables of perceived stress? 65 5. Conclusion 68 Chapter five: Discussion 6 9 1. Limitations of the research 77 2. Implications of the research 81 3. Suggestions for further research 83 Reference List 8 5 Appendices Appendix A: DSM IV criteria for Autism Appendix B: Letter of informed consent and covering letter Appendix C: Coping resources Inventory Appendix D: Demographic information Appendix E: Letter from The Key School principal LIST OF TABLES Page Table 1.1 Descriptive statistics for the sample of the present study 59 Table 1.2 Descriptive statistics of the autistic children in the present study 62 Table 2.1 Descriptive statistics of the CRI scales 63 Table 3.1 Mean scores for Coping Resources Inventory 64 Table 4.1 Chi-squared statistic for support group by stress 67 Table 4.2 Chi-squared statistic for edu cational level by stress 67 Table 4.3 Chi-squared statistic for marital status by stress 67 Table 4.4 Chi-squared statistic for intervention group by stress 67