It s time to cast light on mental health. With your help, we can fund transformative research into the mental health issues that hide behind autism

Transcription

1 It s time to cast light on mental health With your help, we can fund transformative research into the mental health issues that hide behind autism

2 Three quarters of adults with autism told us dealing with stress and anxiety was their top priority. Autistica s One in a Hundred report (2013)

3 Challenges beyond autism 700,000 people in the UK are on the autism spectrum. In addition to their social and communication difficulties, 70% of individuals with autism suffer the distress of mental health disorders such as anxiety, depression and attention problems. When these issues appear alongside autism, mental health difficulties can go undiagnosed and untreated. These present a huge barrier to succeeding in education and employment, impacting on long-term quality of life. 70% of people with autism have at least one mental health condition such as anxiety, depression or behavioural problems, including obsessive compulsive disorders and self-harm. Autistica always responds to the needs of families. In our One in a Hundred report, three quarters of adults said they wanted interventions to help with poor mental health and, in a recent survey, parents told us that support with stress and anxiety was their number one priority. We are committed to help Autistica is launching an ambitious new programme of research. Within four years we will: provide tools to accurately diagnose mental health difficulties in people on the autism spectrum provide a better understanding of the biological features of mental health difficulties in autism produce research evidence for a range of treatment options for individuals across the autism spectrum improve professional knowledge and training It s time to cast light on this neglected but vitally important aspect of autism; and we urgently need your support. The thing that would make the biggest difference would be mental health. We are beginning to know what ordinary people need to be well and we need to know if that s different for people with autism. A mother of a child with autism 3

4 85% of adults with autism never find full time work Casting light on the problem Almost three quarters of individuals with autism meet the diagnostic criteria for one mental health condition and 40% meet criteria for two mental health conditions. Research tells us that the failure to meet the mental health needs of individuals with autism is one of the largest drivers of carer burden. This leads to levels of stress equivalent to those caring for someone with a serious brain injury. At the moment we know that only 15% of individuals with autism are ever able to work full time. Through research, mental health problems can be properly identified and effectively managed, allowing individuals to live fulfilling lives and contribute to wider society. This will ease the employment difficulties that individuals face and alleviate a significant proportion of the current economic impact of autism. Autism remains one of the UK s most expensive medical conditions, costing over 32 billion each year, largely in adult care and lost earnings. We must do more to fund research to improve individuals quality of life and mental well-being and help remove barriers to work and education such as anxiety and depression. Professor Martin Knapp, The London School of Economics and Political Science Research among children and young people with autism has shown that: 70 % meet diagnostic criteria for one mental health condition 40 % meet criteria for two mental health conditions Yet it is estimated that just one third have been diagnosed; and of this third, just one third are receiving treatment. 4

5 My son is not able to work and is not going to be able to sustain a family of his own but he could sustain a good quality of life in the community, look after himself, get out and about and engage in society. These are outcomes that he s not able to achieve at the moment but he might be able to achieve if his mental health problems were adequately addressed. Dr Michael Fitzpatrick, parent Responding to the needs of families Individuals with autism and their families have told us that they want to be able to access a range of interventions, both behavioural and pharmacological which are tailored to age and ability. The communication and interaction difficulties people on the autism spectrum experience can make them particularly vulnerable to mental health issues. With the right support in place, people with the condition can play an active part in their communities and have perfectly good mental health just like anybody else. Mental health issues should be taken seriously in people with autism and not seen as an inevitable part of the condition. Carol Povey, National Autistic Society I would like more interventions for anxiety and other common mental health problems as related to autism needs and strengths. Adult, Autistica s One in a Hundred report (2013) 60% of parents and adults on the autism spectrum told us that they have concerns about using medication to help with their or their child s autism. Typical concerns were adverse side effects and a lack of positive effects. Autistica s One in a Hundred report (2013) Autistica s programme of research into the mental health needs of individuals with autism will aim to develop a more person-centred approach to treatments using medication, whilst also offering a broader range of treatment options. 5

6 The power behind our projects world-leading research centres Autistica is collaborating with King s College London and The University of Warwick, both world-leading centres for research, ensuring that our investment builds on existing expertise and infrastructure. Three overarching aims define our project: to improve identification and research of the mental health conditions most commonly associated with autism to develop autism-specific treatments for those in need to produce practical outcomes that will benefit the autism community and advance clinical practice within a timeframe of just four years Inspiring a new generation of researchers In partnership with these research centres Autistica funding will allow the training of a core group of the next generation of leaders in autism and mental health research. This group of young minds will be encouraged to collaborate with each other and Autistica will provide additional training to broaden their knowledge and experience. We will also help them to work closely with individuals and families in the design and dissemination of their research. Translating research into practice All projects will use Autistica s networks and our partners networks to make sure that training and new approaches reach healthcare professionals, individuals and families to transform as many lives as possible. The projects At the heart of this research are three major projects, each one focused on a cornerstone of study that can lead us to real breakthroughs. Project 1. Mental health in autism: four fellowships at the Institute of Psychiatry, Psychology and Neuroscience (IoPPN) at King s College In partnership with King s College London, Autistica will co-fund four of the most talented young researchers in the UK over four years to explore the most common mental health conditions in autism and develop effective, individualised autism-appropriate interventions. The research fellows will be based at the IoPPN, Europe s largest centre for research and postgraduate education in psychiatry, psychology and neuroscience. The cost: Each fellowship is budgeted at a total cost of 100,000, with Autistica contributing 50,000 per fellow and additional matched funding being invested by the Sackler Institute, MRC and NIHR. Total: 200,000. 6

7 Meet the fellows: Isabel Yorke Why children with autism behave differently, including the role of family and wider environmental factors Using existing data and collecting additional, new information, this longitudinal study will examine how family and other environmental factors contribute to severe anxiety and related problems in early adolescence. This will involve examining factors that put a person with autism at risk of developing anxiety and how this anxiety changes over time. Hannah Pickard Social anxiety in autism This project will determine the underlying cognitive processes that cause and maintain anxiety in autism, and investigate whether psychological interventions (notably Cognitive Behavioural Therapy) that have shown good efficacy for social anxiety in the general population, need to be adapted for those with autism. My brother has autism and I can see the small things he battles with on a daily basis with his anxiety. Research into this area will really help alleviate a lot of these battles for him and for my parents. Hannah Pickard, research fellow Charlotte Pretzsch Identifying chemical imbalances to develop autism-specific mental health treatments This project will use brain scanning to understand the mental health difficulties caused by the chemical shifts of two brain chemicals: excitatory glutamate and inhibitory GABA, known to be imbalanced in autism. Dylan Ryan Identifying and treating sleep disturbance and epilepsy in autism Individuals with autism are also at very high risk of epilepsy and sleep problems. This project will use brain imaging to study brain inflammatory abnormalities in autism and aims to measure how the brain chemicals glutamate and GABA in autism respond to existing drugs. Training These four research fellows will be trained by some of the leading clinical researchers in the world investigating mental health and autism. The PhD training programme at the IoPPN is one of the strongest in the country and rated highly by the UK Medical Research Council. The IoPPN has the best research infrastructure in Europe to conduct psychiatric research and these research fellows will leave their training fully equipped to be independent and confident scientists. 7

8 The projects Project 2. Project 3. Fellowship at The University of Warwick The Anxiety Tool Charlotte Rowe This is a joint-funded three-year PhD fellowship with the Economic and Social Research Council (ESRC). The project will look at the rates and nature of mental health difficulties in people with autism and intellectual disability, and analyse how these change over time. It will use existing data from longitudinal studies to explore what factors may affect both positive and negative outcomes (e.g. parenting practices and parent-child relationships). The research fellow will be co-supervised by Autistica s Research Director and will work closely with the charity on their mental health communication and engagement. The cost: 2,500 per year over three years. Total: 7,500. Professor Emily Simonoff Head of the Department of Child and Adolescent Psychiatry at the IoPPN Autistica is partnering with Professor Emily Simonoff to develop an online tool which will enable families and individuals with autism to self-manage anxiety. It will support children and adults to understand their anxiety and use strategies to overcome these difficulties. A well-respected paper guide is currently available to patients in Professor Simonoff s clinic who have a diagnosis of autism and anxiety, but our aim is to produce the first easily accessible tool of its kind that can be rolled out nationally. The cost: 42, Mental health should be as respected as physical health, and research is key to understanding, diagnosing and treating mental illness like any other disorder. Autistica s latest project to develop effective tools for those on the autism spectrum is an extremely valuable one given the number of individuals with autism affected by mental health problems. We look forward to seeing the practical outcomes from this research initiative. Cynthia Joyce, CEO of MQ: Transforming Mental Health

9 Please support our ground-breaking research and double the value of your gift Autistica receives no government funding. We rely entirely on donations from people like you who share our vision of transforming the lives of those with autism through research. The impact of your donations can be huge. Through the partnerships we have developed with research funders, every pound you donate will be match-funded, at least doubling the value of your gift. You may feel strongly about a particular project and wish to support it in its entirety. But of course, even a small gift can make a big difference. Everything begins with a call to our team. Call or friends@autistica.org.uk to discuss your personal interests and priorities. Your support today promises to cast light on mental health and build brighter futures for those with autism. See the value your donations will bring. 50,000 will sponsor one of Autistica s fellows for the full four years of their project focusing on mental health in autism. You have the opportunity to choose which project you would like to fund and to name it. You can have annual update meetings with the fellow to keep abreast of their progress. 20,000 will sponsor the development and testing of Autistica s Anxiety Tool which will enable individuals to self-manage their anxiety. 12,500 will fund one of Autistica s fellows for a year of their studies. 1,000 pledged per year for three years or more will give you access to our select One in a Hundred Club. In return you will enjoy a calendar of exclusive events including ask the expert evenings with leading UK autism researchers, business breakfasts and gala events. 20 a month or whatever you can afford allows us to plan sustainably for the future. 9

10 Autistica. Our work. Our promises. Autistica transforms the lives of children and adults with autism through ground-breaking research. We fund scientists across the UK to understand autism better, improve diagnosis and develop the best ways to support people, so that everyone with autism can fulfil their potential. Funding for autism research is all too scarce. We believe that every penny donated is precious and we are determined that all gifts to Autistica will make as much impact as they possibly can. That s why we make these commitments to our supporters: We only fund the best Our science strategy is steered by our Science Advisory Group, with membership from leading scientists, family members, service charities and individuals with autism. All of our research projects are reviewed by experts before being assessed by an independent Scientific Review Panel which includes leading scientists in autism and neurology from the UK, Europe and the USA. We are a member of the Association of Medical Research Charities (AMRC), a kitemark of the quality of our scientific processes. The AMRC s rigorous standards ensure that the science we fund is relevant, competitive and does not unnecessarily duplicate effort. We always work in partnership We are committed to working collaboratively with all autism charities, including those which provide education and long-term care and support. We work closely with the National Autistic Society and are members of the Autism Alliance UK, an umbrella group bringing together the largest group of national and regional autism service charities nationwide. Autistica is also represented on the Advisory Board of the All Party Parliamentary Group on Autism, ensuring that research informs policy discussions to improve support for the autism community. We put families at the heart of our research Autistica is passionate about acting as the bridge between researchers and people with autism. We believe, and research tells us, that putting families at the heart of all that we do will result in better research outcomes. Family members and individuals with autism play a crucial part in our boards and committees, including our Science Advisory Group and our Scientific Review Panel. Our partnerships with all of the principal service charities enable us to reach the families these charities work with day by day. The majority of our researchers are clinical professionals alongside their academic work, so they are embedded in the community and at the front line of healthcare provision for autism. We make every donation go further We are committed to ensuring that every 1 we invest attracts at least 3 more from other funders. We achieve this because we consistently fund world-class research teams, who need vital seed funding to get their ideas off the ground, and all our research meets the highest standards of research governance. We fund research that will bring change The UK provides the ideal location for the translation of research into tangible support. Alongside the UK s strengths in neuroscience and neurodisability, one of the significant advantages for autism research in the UK is the close interface clinical researchers have with patients thanks to the NHS. This means that the findings from research can be tested and disseminated widely, improving people s lives quickly and in a cost-effective way. 10

11 Thank you Autistica would like to thank everyone, both businesses and individuals, who have contributed to this project so far. The printed materials and mental health in autism film were produced pro-bono, and the launch event venue provided free of charge, with hospitality covered by a generous donor. Bigdog Bray Leino The Chandler family Charlotte Pretzsch Charlotte Rowe David Braunsberg David Morgan Professor Declan Murphy Dylan Ryan Economic and Social Research Council (ESRC) Elli Morgan Professor Emily Simonoff Professor Francesca Happé Hannah Pickard Institute of Psychiatry, Psychology & Neuroscience (IoPPN) Isabel Yorke Lisa Wood Binks Medical Research Council Meryl and Francesco Caio Michael Fitzpatrick National Institute for Health Research Queensmill School children & staff Sackler Institute Susan Dunne The Frank Jackson Foundation The Mission The Rayne Foundation The Royal Society of Medicine The Shirley Foundation The Sylvia Waddilove Foundation UK The University of Warwick The Vandervell Foundation Timothy Bentinck Vasiliki Totsika Wave Studios William Binks

12 Join us today to change lives tomorrow. Find out more at Registered with the Charity Commission in England No Company No Mortimer Street, London W1W 7RB, United Kingdom. T: +44 (0) E: