Experiences of families of people with Autism Spectrum Disorder in the Canterbury/West Coast area A thesis submitted in partial fulfilment of the requirements for the Degree of Master of Arts in Human Services in the University of Canterbury by Paul D. Rawdon University of Canterbury 2012 1 Table of Contents Abstract...............................................................................................................................7 Acknowledgments ............................................................................................................10 Glossary ............................................................................................................................12 Chapter 1 Introduction.....................................................................................................5 1.1 Aim of the thesis................................................................................................................. 6 1.1.1 Thesis summary.......................................................................................................................... 6 Chapter 2 Pervasive Developmental Disorders and Autistic Spectrum Disorders Explained..........................................................................................................................10 2.1 Characteristics of Autistic Spectrum Disorders........................................................... 11 2.1.1 History and development: Autism............................................................................................. 11 2.1.2 History and development: Asperger’s syndrome..................................................................... 11 2.2 Continuum or discrete diagnosis................................................................................... 12 2.2.1 Aetiology of Autism ................................................................................................................. 13 2.3 Characteristics of Autism and Asperger’s syndrome................................................. 13 2.3.1 Autism....................................................................................................................................... 13 2.3.2 Asperger’s syndrome................................................................................................................ 15 2.3.3 Pervasive Developmental Disorders ........................................................................................ 19 2.4 Summary .......................................................................................................................... 19 Chapter 3 ..........................................................................................................................21 Genesis of Autism Services in New Zealand..................................................................21 3.1 The Albury-Thomson case ............................................................................................. 21 3.2 The inquiry into Autism services in New Zealand ...................................................... 23 3.2.1 Additional barriers .................................................................................................................... 24 3.2.2 Recommendations..................................................................................................................... 24 3.2.3 Post inquiry environment.......................................................................................................... 26 3.3 Autistic Association of New Zealand research project (2001) ................................... 27 3.3.1 Diagnosis................................................................................................................................... 27 3.3.2 Needs assessment...................................................................................................................... 28 3.3.3 Respite care............................................................................................................................... 28 3.3.4 Carer support............................................................................................................................. 29 3.3.5 Family support .......................................................................................................................... 29 3.3.6 Satisfaction with public services .............................................................................................. 29 2.3.7 Work and Income ..................................................................................................................... 30 2.4 ‘Autism Spectrum Disorder Guideline’ (2008)............................................................ 30 3.5 Summary .......................................................................................................................... 32 Chapter 4 ..........................................................................................................................33 Family matters .................................................................................................................33 2 4.1 Impacts on parents.......................................................................................................... 33 4.1.1 Early diagnosis and intervention .............................................................................................. 34 4.1.2 Psychological impacts .............................................................................................................. 34 4.2 Impacts on the wider family........................................................................................... 39 4.2.1 Peer support groups .................................................................................................................. 41 4.3 Financial impacts............................................................................................................. 41 4.4 Coping strategies ............................................................................................................. 43 4.4.1 Family composition .................................................................................................................. 43 4.4.2 Coping strategies over time ...................................................................................................... 44 4.5 The ‘empty nest’ .............................................................................................................. 46 4.6 Summary .......................................................................................................................... 47 Chapter 5 ..........................................................................................................................49 Alternative Treatments and Fads ...................................................................................49 5.1 Early beliefs and historical treatment and fads........................................................... 50 5.1.1 ‘Refrigerator mothers’ .............................................................................................................. 50 5.1.2 Schizophrenia............................................................................................................................ 51 5.1.3 Electric shock treatment ........................................................................................................... 51 5.1.4 D-lysergic acid diethylamide (LSD) ........................................................................................ 52 5.2 Modern treatments and ‘fads’ ....................................................................................... 52 5.2.1 Elimination diets....................................................................................................................... 53 5.2.2 Sensory integration therapy...................................................................................................... 53 5.2.3 Dolphin-assisted therapy .......................................................................................................... 53 5.2.4 Mercury and the Measles, Mumps and Rubella (MMR) Vaccine........................................... 54 5.2.5 Chelation therapy...................................................................................................................... 55 5.2.6 Testosterone treatment............................................................................................................. 55 5.2.7 Dore Programme....................................................................................................................... 56 5.2.8 Applied behaviour analysis (ABA) .......................................................................................... 57 5.3 Summary .......................................................................................................................... 57 Chapter 6 ..........................................................................................................................59 Autistic Spectrum Disorder as a Disability: Social Policy Issue ..................................59 6.1 From ‘institutionalisation’ to ‘deinstitutionalisation’.................................................. 59 6.1.1 Institutional care........................................................................................................................ 59 6.1.2 Deinstitutionalisation...............................................................................................................