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Draft Code of Good Practice on Prevention of Violence Against Persons with Autism

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DRAFT CODE OF GOOD PRACTICE ON PREVENTION OF VIOLENCE AGAINST PERSONS WITH AUTISM September 1998 1 The European DAPHNE initiative, adopted in 1997, is aimed at supporting the activities of Non Governmental Organisations (NGOs) who are combating violence perpetrated against children, adolescents and women. We welcome the European Commission’s suggestion to implement a four to five year action programme of the Union to follow on the first initiative. Such mid-term action programme is most needed to meet the crucial needs identified during the implementation of the first phase and to promote a better co-ordination of actions of prevention at European level. (September 1998) 2 Acknowledgements On behalf of Autism-Europe, persons with autism and their families, I should like to single out for special thanks Yvette Dijkxhoorn of the University of Leiden (NL), André Foubert, director of a Maison d’Accueil Spécialisée (special residential care centre) (F), Dr. Paula Freitas, a child psychiatrist with APPDA of Porto (P), Bill Meldrum of the Scottish Society for Children with autism (UK), Dr. Donata Vivanti, President of ANGSA Lombardia (I) and Dr. Christopher Williams of the University of London (UK) for having accepted to draft this Code of Good Practice and thus share with us the fruits of their experience. Their task was on a par with the expectations voiced by many parents, that is, arduous and tricky. Despite some very short deadlines, the Experts Group accomplished its mission with the support of Anne- Sophie Parent, Autism-Europe Administrative Director and project co-ordinator, and I should like to thank them from the bottom of my heart for their enthusiastic support for our Code of Good Practice project. I should also like to thank the speakers who, through their presentations at the seminar, will give our project a broader dimension. Let me mention in particular Dr. Joaquim Fuentes, a psychiatrist working with children and teenagers at San Sebastian Hospital (E), Professor Ernesto Caffo, President of the Italian association to control violence against children, Telefono Azuro, Dr. Theo Peeters, Director of Opleiding Centrum Autisme in Antwerp (B), Dr. Rita Jordan, of the University of Birmingham (GB), and the "consortium" that worked on the unacceptable procedures project: Pat Matthews, Vice-President of Autism-Europe and Director of the Irish Society for Autism (IRL), Isabel Cottinelli-Telmo, Vice-President of Autism-Europe and President of the APPDA (P), Dr. Paul Shattock, Honorary Secretary of Autism-Europe, University of Sunderland (GB) and Gloria Laxer, a specialist in Education and Communication Sciences (F). Special thanks are also in order for all the participants in the seminar; their comments and contributions will help us greatly to forge ahead with this Code. Many thanks as well to the many individuals and associations who sent us their testimony and documents to help us with our work and without whom this project would never have seen the light of day. We took on this difficult task for them and their children and to respond to the urgent demand of the many parents who want to see an end to poor practices and the creation of the necessary foundations to guarantee all persons with autism a fitting future. We are all fully aware that this Code of Good Practice is only a step towards better recognition of the rights of persons with autism. It does not claim to lay down immutable grand principles once and for all. However, I hope that it will help lay the first foundations of European co-operation to improve the lives of the particularly vulnerable individuals who are struck by autism and spare them useless suffering. This Code of Good Practice comes in the wake of the Charter of Rights for Persons with autism that was presented at Autism-Europe's 4th International Congress in May 1992 and the European Parliament's written Declaration that was adopted on 9 May 1996. Each step we take in our action brings us a little closer to better respect for the rights of persons with autism. Finally, I would to thank the European Commission DAPHNE Initiative for its support to our project and I wish to thank in particular Mr Anthony Simpson and his team of the Task Force “Cooperation on Justice and Home Affairs” for their valuable help and friendly advise. Gilbert Huyberechts President of Autism-Europe 3 CONTENTS INTRODUCTION......................................................................................................................................5 CHAPTER 1 : GENERAL OVERVIEW Christopher Williams .............................................................................................................................7 CHAPTER 2: WHAT IS AUTISM Yvette Dijkxhorn...................................................................................................................................15 CHAPTER 3: THE RISK FACTORS OF MISTREATMENT IN THE FAMILY Donata Vivanti ......................................................................................................................................23 CHAPTER 4: RISK FACTORS INHERENT IN THE STRUCTURES OF INSTITUTIONS AND STAFF WORKING IN THEM André Foubert ......................................................................................................................................29 CHAPTER 5: PREVENTION OF VIOLENCE / INTERVENTION ON THE PERSON WITH AUTISM Paula Pinto de Freitas..........................................................................................................................37 CHAPTER 6: PREVENTING MISTREATMENT IN THE FAMILY Donata Vivanti ......................................................................................................................................43 CHAPTER 7: PREVENTION WITHIN AGENCIES & CARE SETTINGS Bill Meldrum..........................................................................................................................................51 CHAPTER 8 : THE IMPORTANCE OF TRAINEE IN THE PREVENTION OF VIOLENCE AND ABUSE AGAINST PEOPLE WITH AUTISM Theo Peeters & Rita Jordan ................................................................................................................57 CHAPTER 9: A CODE OF PRACTICE FOR THE APPROPRIATE USE OF MEDICATION FOR PEOPLE WITH AUTISM Paul Shattock .......................................................................................................................................75 CHAPTER 10 : EUROPEAN DIMENSION Dr Christopher Williams ......................................................................................................................81 CHAPTER 11 : POSSIBILITIES FOR CHANGE - A CASE STUDY OF THE UK Dr Christopher Williams ......................................................................................................................89 4 INTRODUCTION Concern about harm suffered by people with disabilities has increased in recent years.1 Lifestyle often creates particular vulnerabilities, and in some cases intellectual difficulties can make reporting and giving formal evidence problematic. Suffering is usually ‘invisible’ to the public, policy-makers and politicians.2 The documentation currently available is nationally based, because law is a central aspect and most of the relevant legislation is at the state level.3 So far there has not been a European perspective. In addition, most research considers people with learning disabilities as a single group, and there has not been any specific consideration of what might be unique in relation to people with autism. This Code has been drafted by an international team of experts composed of Yvette Dijkxhoorn of the University of Leiden (NL), André Foubert, director of a residential care centre (F), Dr. Paula Freitas, child psychiatrist with APPDA and lecturer at the University of Porto (P), Bill Meldrum of the Scottish Society for Children with autism (UK), Dr. Donata Vivanti, President of ANGSA Lombardia (I) and Dr. Christopher Williams of the University of London (UK). Other experts participated in the project : Dr Rita Jordan, University of Birmingham (UK), Dr Theo Peeters, Opleiding Centrum Autisme (B) and Paul Shattock, University of Sunderland (UK). The project was co-ordinated by Anne-Sophie Parent, Autism-Europe Administrative Director. Chapter One outlines the problem in general terms. Subsequent chapters identify the risk factors in relation to autism, measures of prevention and recommendations in terms of good practice. Finally, the concluding chapters give an overview of the areas in which a Europe- wide approach could add a new dimension and analyse an example of new legislation which will take on board the needs of vulnerable people. (A glossary and a bibliography will complete the final document). 11 Sobsey, D. (1994) Violence and abuse in the lives of people with disabilities - the end of silent acceptance, Paul H. Brookes Publishing: Baltimore. 2 Williams, C. (1995) Invisible victims: crime and abuse against people with learning disabilities, Jessica Kingsley: London. 3 For example: Brown,H. Stein, J. & Turk, V. (1995) ‘Report of a second two-year incidence survey on the reported sexual abuse of adults with learning disabilities: 1991-1992,’ Mental Handicap Research, 8, 1. 5 6 CHAPTER 1 : GENERAL OVERVIEW Christopher Williams Institute of Education, University of London 1.1 HARM AND SUFFERING - THE EUROPEAN DIMENSION Thinking on a European level about a problem that is usually identified in terms of state legislation, is not straightforward. Actions that are unlawful in
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