Autism 2011_Layout 1 08/09/2011 17:40 Page 1 The Autism Act 2009: developing specialist skills in autism practice RCN PUBLISHING ESSENTIAL GUIDE RCN PUBLISHING This guide has been supported by Autism 2011_Layout 1 08/09/2011 17:40 Page 2 ESSENTIAL GUIDE This guide has been written by Jill Aylott, Centre for Professional and Organisation Development, Faculty of Wellbeing, Sheffield Hallam University Contents 3 Introduction 5 A note about terminology 5 Defining autism to guide best practice Environments and sensory issues Autism as a sensory perceptual impairment Barriers in the environment Use of reasonable adjustments to enable access to the environment Communication, information and processing Understanding behaviour Use of reasonable adjustments to change personal behaviour Attitudinal barriers 16 Diagnosis and services Transition 18 References 19 Summary RCN Publishing Company Ltd To subscribe call 0345 772 6100 The Heights, 59-65 Lowlands Road www.learningdisabilitypractice.co.uk Harrow, Middlesex HA1 3AW www.mentalhealthpractice.co.uk For further information contact: ISBN: 1873853858 [email protected] Cover photograph: Science Photo Library © Copyright RCN Publishing Company Ltd 2011. All rights reserved. No part of this book may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without prior permission of the publisher. 2 october :: 2011 Autism 2011_Layout 1 08/09/2011 17:40 Page 3 Introduction People with autism are ‘falling through gaps in services’ (Loynes 2001, Department of Health (DH) 2006, National Autistic Society 2010). The All Party Parliamentary Group for Autism (APPGA) was formed in 2000 to work with the main political parties to raise awareness of the difficulties that people with autism and their families face, and to campaign and lobby for legislation change. The National Autistic Society drafted the Autism Act, which was taken forward by Cheryl Gillan as a private member’s bill in November 2009. The bill was supported by a coalition of 16 autism organisations and had all-party support. The bill was passed and required the publication of an autism strategy paper Fulfilling and Rewarding Lives in March 2010 (DH 2010a); this was followed by the publication of a three-year delivery plan in April 2010 (DH 2010b) and statutory guidance to implement Fulfilling and Rewarding Lives in December 2010 (DH 2010c). The Autism Act 2009 seeks to give health and social care organisations specific legislative responsibility to: 4Provide all staff with statutory training in autism, with front line staff required to have more specialist training in meeting the specific needs of adults with an autism spectrum disorder. 4Ensure that the diagnosis of autism is accompanied by an assessment of need. Before the act, few more able people with autism were accessing community care assessments, and of those who did only 45 per cent were receiving services specified in the assessment (Loynes 2001). 4Provide all children with a statement of an autism spectrum disorder with a drawn-up 'transition plan' for progression into adult services. Before the act, an inquiry into ‘transition’ found that: ‘Transition services are still failing most young people on the autism spectrum’, and that: ‘Getting it wrong for a young person on the autism spectrum can have catastrophic consequences that may be irredeemable because of their inherent difficulty with new situations’ (Allard 2009). 4Ensure that adults with autism are involved in local service planning. Local authorities are not aware of the number of people with an autism spectrum disorder living in their locality, which ESSENTIAL GUIDE RCN PUBLISHING they need to be to identify and adequately plan ways to work with people with autism. The Equality Act 2010 replaced most of the Disability Discrimination Act 1995. The Equality Act requires ‘reasonable adjustments’ to the way things are done in public services – for example, changing a policy, changing the structure of the building or providing information in an accessible format. It is not appropriate to wait until a person with a disability seeks to use a service – the act requires public sector organisations be proactive in identifying the needs of disabled people. This guide will explore how services might anticipate the needs of people with autism. Its aims are to: 4Explore an understanding of autism in adulthood (or transition to adulthood) that helps practitioners to provide a positive experience for people with autism seeking to access services in health and social care. 4Review how this knowledge might help to identify and plan to meet the needs of adults with autism, while making ‘reasonable adjustments’ to the services to enable this to occur. october :: 2011 3 Autism 2011_Layout 1 08/09/2011 17:40 Page 4 4Provide a clear pathway for the can be enabling, while others can be disabling development of leaders in the field of (Swain et al 1993). A social model of autism in health and social care who will understanding autism is needed to understand ‘champion’ the implementation of the how barriers in health and social care can have Autism Act 2009. a disabling and distressing effect on the person This guide is aimed at people in a specialist role with autism if service providers lack knowledge who will lead the planning, development and of autism and fail to make some level of commissioning of services with local authorities reasonable adjustment. and GP consortia. A report from the National People with autism are sometimes referred to Audit Office (2009) stated that ‘80 per cent of as having an ‘invisible’ impairment, and GPs feel they need additional guidance and identifying how reasonable adjustments can be training to manage patients with autism more made to make services more accessible may not effectively’. Although the employment, police be easy. But, reasonable adjustments need to be and probation services are not legally required made to: to respond to the Autism Act 2009, the Autism 4Premises – by exploring how the Strategy (DH 2010a) and Statutory Guidance environment can be better accessed by (DH 2010c) could help improve the services in people with autism. these areas. The vision of the act is that: 4Processes – by exploring how appointments ‘All adults with autism are able to live fulfilling can be scheduled better. and rewarding lives within a society that accepts 4Communication – by exploring how and understands them. They can get a diagnosis documents can be presented in a way that and access support if they need it and they can can be better processed by people with depend on mainstream public services to treat autism. them fairly as individuals, helping them make the This guide also discusses the development of skills most of their talents.’ and knowledge in autism practice to explore: The Autism Strategy (DH 2010a) outlines the 4Autism as an impairment of sensory need for staff to have training in autism. But, perception. unless training helps staff to develop their skills 4The use of an environmental audit to ensure in making reasonable adjustments under the organisation-friendly access for people Equality Act 2010, little will change in the lives with autism. of people with autism and their families. Simply 4The use of a communication profile to providing training using a medical model is develop a personalised pathway through insufficient, because this will only provide health and social care and to make information about the condition of autism in reasonable adjustments as part of the isolation from the environment that defines the person’s care plan. characteristic behaviours that are part of the 4A systematic approach to understanding autism spectrum condition. Some environments the meaning of behaviour. 4 october :: 2011 Autism 2011_Layout 1 08/09/2011 17:40 Page 5 A note about terminology people with autism and their families. This Many websites and autobiographical accounts section of the guide will explain the likely written by people with autism are available. barriers raised by: Some of these suggest that people with autism 4Environments and sensory issues. are dissatisfied with the term ‘autistic spectrum 4Communication and information, and disorder’ (Gerland 2000, Jackson 2002, Lawson cognitive processing issues. 2000). A movement away from the medical 4Attitudes from health and social care model of defining autism as a disorder towards workers. an understanding that it is a condition It will identify possible 'reasonable adjustments' characterised by certain behaviours (some that could give people on the autism spectrum idiosyncratic) that may be seen and evidenced in greater access to health and social care services. some environments but not in others has Environments and sensory issues Autism can emerged. This suggests that people with an cause people to experience high levels of stress autism spectrum condition are disabled by and distress, particularly when they are in highly factors external to themselves, recognising stimulating and demanding environments autism as an impairment, which will have (Williams 1998a, 1998b, 1998c). This is the area positive and negative aspects depending on the in which 'reasonable adjustments' might most stimuli present in particular environments. The improve access to services for people on the official diagnostic criteria (Diagnostic Statistical autism spectrum. People with autism show Manual [DSM-IV], International Classification of excessive physiological