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People with Autism a Life Less Ordinary New Philanthropy Capital (NPC) Helps Donors Understand How to Make the Greatest Difference to People’S Lives

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People with Autism a Life Less Ordinary New Philanthropy Capital (NPC) Helps Donors Understand How to Make the Greatest Difference to People’S Lives 2180 Autism cover:On Your Marks Cover# 13/9/07 12:41 Page 1 A life less ordinary: People with autism People A life less ordinary New Philanthropy Capital (NPC) helps donors understand how to make the greatest difference to people’s lives. We provide September 2007 independent research and tailored advice on the most effective and rewarding ways to support charities. Adrian Fradd Our research guides donors on how best to support causes People with autism Iona Joy such as cancer, education and mental health. As well as highlighting the areas of greatest need, we identify charities that A guide for donors and funders could use donations to best effect. Using this research, we advise clients (including individuals, foundations and businesses) on issues such as: • Where is my support most needed, and what results could it achieve? • Which organisation could make the best use of my money? • What is the best way to support these organisations? New Philanthropy Capital 3 Downstream 1 London Bridge London SE1 9BG New Philanthropy Capital t: +44 (0)20 7785 6300 f: +44 (0)20 7785 6301 w: www.philanthropycapital.org e: [email protected] A company limited by guarantee Registered in England and Wales Registered charity number 1091450 • Published by New Philanthropy Capital All rights reserved September 2007 ISBN 978-0-9553148-8-9 Designed by Falconbury Ltd Printed by CGI Europe which is a ISO14001 accredited company which uses green energy generated from 100% renewable sources. This document is printed on Revive 75 Silk which is a 75% recovered fibre product. 2180 Autism cover:On Your Marks Cover# 13/9/07 12:41 Page 2 Other publications Community A life less • Not seen and not heard: Child abuse, a guide for donors and funders (2007) • A long way to go: Young refugees and asylum seekers in the UK (2007) • Home truths: Adult refugees and asylum seekers (2006) • Inside and out: People in prison and life after release (2005) ordinary • Grey matters: Growing older in deprived areas (2004) • Side by side: Young people in divided communities (2004) People with autism • Local action changing lives: Community organisations tackling poverty and social exclusion (2004) • Charity begins at home: Domestic violence (2003) A guide for donors and funders Education • Misspent youth: The costs of truancy and exclusion (2007) • Read on: Literacy skills of young people (2007) • On your marks: Young people in education (2006) • What next?: Careers education and guidance for young people (2005) • School’s out?: Truancy and exclusion (2005) • Making sense of SEN: Special educational needs (2004) Health and disability • Don’t mind me: Adults with mental health problems (2006) • Valuing short lives: Children with terminal conditions (2005) • Ordinary lives: Disabled children and their families (2005) • Out of the shadows: HIV/AIDS in Burundi, Democratic Republic of Congo and Rwanda (2005) • The hidden assassin: Cancer in the UK (2004) • Caring about dying: Palliative care and support for the terminally ill (2004) • Rhetoric to action: HIV/AIDS in South Africa (2003) Cross-cutting research • Striking a chord: Using music to change lives (2006) Improving the voluntary sector • Going global: a review of international development funding by UK Trusts and Foundations (2007) • Funding success: NPC’s approach to analysing charities (2005) • Surer Funding: Improving government funding of the voluntary sector (2004, published by acevo) • Full cost recovery: A guide and toolkit on cost allocation (2004, published by NPC and acevo) • Just the ticket: Understanding charity fundraising events (2003) • Funding our future II: A manual to understand and allocate costs (2002, published by acevo) Forthcoming Research Violence against women (2007) How to fund (2007) Out of school hours (2007) Environment overview (2007) Financial exclusion (2007-2008) Advocacy and systemic change (2007-08) Homelessness and housing (2007-08) Child mental health (2007-2008) Young offenders (2008) Substance abuse (2008) Degenerative diseases (2008) This report is available to download free of charge from our website www.philanthropycapital.org. To purchase a hard copy, please call Central Books: 0845 4589910 Notice and Disclaimer This report has been supported by: Lloyds TSB Foundation Scotland; The Shirley Foundation; • The content of this report is the copyright of New Philanthropy Capital ("NPC"). The Mercers’ Company; The Oyster Foundation; Mr and Mrs Roderick Jack; and an anonymous individual. • You may copy this report for your personal use and or for that of your firm or company and you may also republish, retransmit, redistribute or otherwise make the report available to any other party provided that you acknowledge NPC's copyright in and authorship of this report. Cover Photograph supplied by Prior’s Court • To the extent permitted by law, NPC shall not be liable for loss or damage arising out of or in connection with the use of this report. This limitation applies to all damages of any kind, including (without limitation) compensatory, direct, indirect or consequential damages, loss of data, loss of income or profit, loss of or damage to property and claims of third parties. Summary An estimated one in every hundred schools, training teachers, advising Addressing the wider picture people in the UK has autism. This means parents and lobbying government. Families: Although each family is roughly 540,000 people have problems Employment: Only 6% of adults with different, they all have to care for their communicating and interacting with autism are in full-time employment. relative with autism; fight for better other people. Some will have repetitive While for many people with autism work services and support; and deal with the behaviours and narrow interests. People will never be an option, there are others emotional impact. Parents of children with autism are more likely to have who are missing out. Lack of with autism are twice as likely to have sensory problems, learning difficulties, employment leaves people poor, mental health needs than parents in mental health problems and epilepsy. depressed and isolated. Charities are general. Charities help families to cope: providing information and advice; Autism and charities preparing people for employment and practical help and emotional support. Charities are increasing our helping them find and keep jobs. understanding of autism; helping Housing and support: Half of adults Government: Government plays a central individuals with autism; and improving with autism are unhappy with where role in people’s lives. It is responsible for their environment. Although 86% of they live. Either people with autism are people’s health, safety, education, housing the sector’s funding comes from deemed too capable to require support, and care. Autism does not fit easily into government, private donors can make or so incapable that they often have little existing government structures or funding contributions that add enormous value choice over how they live. More effort is streams and often falls through the gaps. to the sector. spent controlling their behaviour, rather Charities are making sure that than tackling the root of the problem. government does not overlook autism A role of a donor Charities are helping people to live how and has the necessary information and Donors have many opportunities to they want to, with the right support and commitment to provide better support improve the lives of people with autism. encouragement in place. and services. Finding the best options involves donors asking a number of questions: what type Friends and leisure: Taking part in Public attitudes: Poor public of activity they want to fund, which social and leisure activities helps people understanding adds to the challenges group they want to help, at what level with autism develop skills; enjoy that people with autism face. If doctors, they want to operate and what issue themselves; make friends and feel less police officers, or the general public have they want to tackle. Underlying all of this isolated. Many people with autism lack little awareness or knowledge of autism, it is the need to find effective charities the ability to take part in leisure activities makes it harder for people with autism to having real impact. to have a fulfilling social life. Charities are live their lives and be part of their local helping develop social skills, improve community. Charities educate people Helping the individual with existing social opportunities and run about autism, teaching police officers and autism specialist programmes. GPs about it and how to respond to it. Diagnosis: The earlier diagnosis occurs Research: Knowledge is power. the better. Children with autism need Research provides the knowledge to specialist help. Without this, they can Autism facts address the effects of autism, ranging get stuck in repetitive routines, lose their from genetic research to developing • 540,000 people in the UK are estimated skills and become depressed and practical strategies, eg, effective to have autism. anxious. Diagnosis helps people get education and employment schemes. their needs recognised so that they are • 40% of children with autism have no Charities not only raise money for eligible for support. Charities are friends. high-quality research, but also influence devising better diagnostic tools to • Only a fifth of teachers working with other funders. They improve capacity identify more people; they are working children with autism have had training. and communication between researchers with government to improve the and those affected by autism. process; and they are providing help • A quarter of children with autism are and advice to parents and individuals excluded from school. Conclusions: Arguments can be made for addressing many of the areas in along the way. • Half of adults with autism are unhappy someone’s life. However, NPC has where they live. Education: Education is the only identified four priorities where we feel that intervention commonly accepted as • Only 6% of adults with autism are in a donor can have the greatest impact: successful for autism.
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