THE AUTISM DIVIDEND Reaping the Rewards of Better Investment
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THE AUTISM DIVIDEND Reaping the rewards of better investment By Valentina Iemmi, Martin Knapp and Ian Ragan on behalf of the National Autism Project 2 CONTENTS January 2017 CONTENTS 4 FROM PROFESSOR SIR MICHAEL RUTTER 40 RESEARCH RECOMMENDATIONS 5 FOREWORD 44 CONCLUSION 6 EASY READ SUMMARY 47 APPENDIX A – RESEARCH METHODS 10 EXECUTIVE SUMMARY 50 APPENDIX B – CASE STUDIES 14 THE NATIONAL AUTISM PROJECT 52 Screening and diagnostic assessment 17 WHY THE PROJECT IS NEEDED 56 Early interventions 22 METHOD OF WORKING 62 Social skills interventions 23 THE MEANING OF EVIDENCE 66 Parent training and support programmes 26 POLICY RECOMMENDATIONS 72 Cognitive behaviorial therapy for 26 Recommendation 1. anxiety Ensure timely identification and diagnosis 79 Employment support 28 Recommendation 2. 83 Health checks Provide evidence-supported interventions 88 Personalised care and support 30 Recommendation 3. 94 Assistive devices and technologies Make the economic case 101 Anti-stigma campaigns and 32 Recommendation 4. anti-bullying interventions Remove barriers to access 107 Pharmacological interventions 34 Recommendation 5. Tackle environmental and 109 APPENDIX C – NATIONAL other stressors WORKSHOPS 35 Recommendation 6. 117 APPENDIX D – PEOPLE Fight stigma and discrimination 118 APPENDIX E – ENDORSEMENTS 36 Recommendation 7. Ensure better transitions 37 Recommendation 8. Coordinate action across sectors 38 Recommendation 9. Build better information systems 3 From Professor Sir Michael Rutter The National Autism Project is to be Quite rightly, the report recognises that it has warmly congratulated in producing this to be based on currently available findings, highly informative and broad-ranging, but whilst noting that basic science advances in the years ahead are very likely to lead to easily accessible, report. Bravely, it highlights changes in treatment recommendations based the fact that most policy and practice is not on a better understanding of the mechanisms supported by evaluation of effectiveness underlying the biology. (let alone cost-effectiveness) by studies of Most of all, the Project has admirably good quality. Rightly, this leads to a call for succeeded in achieving a balance much greater research funding, but further between hope and caution on what we discussion is needed on both the level of really know. That was no easy matter research expertise that is available and the given that some of the findings and types of research that are most needed. conclusions are bound to be somewhat Whereas far too many reviews shy away from controversial. Overall, it is clear that recommending that some treatments should this is much the best review of the be dropped because of the evidence indicating field that has been undertaken to date. that they do not work, this report points out that drug trials have mainly failed to show any effects Researchers, clinicians and policy makers of medication on core symptoms. The report will all find much to think about in this notes some of the ineffective treatments (such excellent report. as secretin) and those where there are harms as well as benefits – such as the antipsychotics (for Professor Sir Michael Rutter example, risperidone) that carry a substantial risk Professor of Developmental of metabolic ill-effects. Psychopathology, Social, Genetic, Early screening is advocated but it is unfortunate and Developmental Psychiatry Centre, that there was no discussion of the fact that few Institute of Psychiatry, Psychology and of the measures covered the broader phenotype. Neuroscience, King’s College London 4 FOREWORD FOREWORD From Dr Elizabeth Vallance JP PhD Chair, National Autism Project Strategy Board Some 700,000 people in the UK Autism Dividend, which would be the result of are autistic – more than the entire properly evidenced practice not only improving population of Sheffield. And although the lives of autistic people but making sure that society’s resources are allocated in the the social cost of autism is reckoned to most cost-effective ways. be a staggering £32 billion a year, annual research funding is a mere £4 million. This NAP has benefitted from the help and support of many people. We have been able to draw clear asymmetry was the starting point on the experience of many experts, from of the National Autism Project (NAP) diverse backgrounds, who have worked and our report is its response. together always putting the interests of the project and of the autistic community first. Our We are hugely grateful to the Shirley report has been immeasurably strengthened, Foundation for financing the project in its too, by the participation at every stage in the entirety, which has meant we have not had to project of autistic people who in contributing seek funding out of the area’s limited existing their time and expertise have helped us to financial cake. Indeed, as I said at NAP’s avoid mistakes of emphasis and direction we launch in April 2015, we hope substantially to might have made without their perceptive increase the size of that cake! input. Thanks, too, to the Strategy Board The original aim of the Project was for being the guiding light in this long and to map research in the area, identify complex piece of work. effective,evidence-based and cost-effective We hope that our report’s findings practice and then to be the authoritative voice for the dissemination of such interventions will usher in a new era in research and practice while advocating increased and practice, which will unequivocally research funding in areas where further improve the lives of all autistic people. evidence was required. It became clear from the research undertaken by the LSE, however, that the evidence base for much existing practice was not robust, so that policy and interventions are rarely supported by clear evidence of effectiveness. There is the opportunity, therefore, for what we call the 5 EASY READ SUMMARY EASY READ SUMMARY The National Autism Project We want autistic people and their families to get what they need to live happy and healthy lives. Most autistic people need extra support in their lives. But we don’t know very much about how good this support is. This report looks at lots of information about the services and activities that can be used by autistic people and their families. It has been written by autism experts and researchers. Our Autistic Advisory Panel made sure that the views of autistic people are included. It covers England, Northern Ireland, Scotland and Wales. 6 EASY READ SUMMARY This is what we did We looked at lots of services and activities used by autistic people. These services are used by people at different times in their lives, like at school, going to the doctor or getting a job. We tried to understand whether these services and activities are helpful. We have also tried to work out if they are good value for money. We found that often there is not enough evidence about services or activities. We want to see more evidence to help autistic people and local services choose the best option. 7 EASY READ SUMMARY We have 10 ideas to help make the situation better 1. People’s autism should be identified as early as possible. This will help them throughout their lives. They should then get access to good support. 2. There should be better evidence that services and activities are good and helpful. Things that we know are bad or dangerous should not be available. 3. People in charge of autism services should think about how much a service or activity that is helpful really costs. Sometimes services or activities for autistic people may cost a lot of money in the beginning. But they might also help to save money in the future. 4. More should be done to remove the things that stop autistic people from getting the services or activities that they want or would be good for them. It should be easier for autistic people to get a job and have regular health checks. 5. Lots of autistic people get very stressed or anxious. There should be support for them and their families in the community. Everyone should understand more about what can cause anxiety or stress for autistic people and the simple things they can do to help. 8 EASY READ SUMMARY 6. There should be a campaign to help everyone understand more about autism. A national campaign is helping to change people’s views about mental health. We want one for autism. 7. There should be better planning for when autistic people have to make big changes in their lives, like leaving school or moving house. Autistic people and parents and carers need good information to help them. 8. Services working with autistic people should work together better. They should think about how money to pay for autism services is best used. 9. We need to collect more information about autistic people. This would help services make better plans. 10. There should be much more money spent on autism research so we can understand better what makes different services and activities good or bad. For example, we need to know more about how to help autistic people get and keep jobs and how to prevent bullying. 9 EXECUTIVE SUMMARY EXECUTIVE SUMMARY Background In 2007, research led by Professor Martin The Shirley Foundation believes that a focus Knapp from the London School of Economics on actions that the evidence shows are and Political Science demonstrated that the both effective and cost-effective will benefit economic consequences of autism in the the autistic community and contribute to a UK totalled £28 billion per annum. The study, reduction in the huge impact of autism on the financed by The Shirley Foundation, stimulated UK economy. This is the Autism Dividend. other work such as the National Audit Office report in 2009, Supporting People with Autism The analysis of evidence was carried out over through Adulthood, which showed that a period of 21 months.