ESSENTIAL GUIDE Developing specialist skills in autism practice This guide has been supported by Autism_2015 01 ofc.indd 1 14/09/2015 11:40 ESSENTIAL GUIDE Developing specialist skills in autism practice This guide has been written by Jill Aylott, Centre for Leadership, Sheffield Hallam University Updated in October 2015 Contents 3 Introduction 5 A note about terminology 6 Defining autism to guide best practice 7 Environments and sensory issues Autism as a sensory perceptual impairment 9 Barriers in the environment 12 Access to the environment Communication and processing 13 Understanding behaviour 15 Changing personal behaviour Attitudinal barriers 16 Diagnosis and services Transition 17 Summary 18 References Facebook “f” Logo CMYK / .ai Facebook “f” Logo CMYK / .ai RCNi © Copyright 2015 RCNi The Heights, 59-65 Lowlands Road Nursing-Standard All rights reserved. No part of this Harrow-on-the-Hill publication may be reproduced, stored Middlesex HA1 3AW @EditorLDPandMHP in a retrieval system, or transmitted in any form or by any means electronic, Managing Director Rachel Armitage Editor in chief Graham Scott mechanical, photocopying, recording or Editor Colin Parish otherwise, without prior permission of Designer Sujata Aurora the publishers Head of Production Jennifer Oldfield Senior advertisement and sponsorship Cover image: Science Photo Library executive Julia Gomersall For further information contact Colin Parish at [email protected] Autism_2015 02-23.indd 2 14/09/2015 11:38 Developing specialist skills in autism practice Introduction the specific needs of adults with an autism The Autism Act 2009 was a remarkable spectrum disorder (ASD). outcome of a campaign to lobby for a change in Ensure that the diagnosis of autism is the way services are planned for, and delivered accompanied by an assessment of need. to, people with autism and their families. Before the act, ‘more able’ people with The act was drafted by the National Autistic autism were accessing community care Society supported by a coalition of 16 autism assessments, and of those who did only organisations and the All Party Parliamentary 45% were receiving services specified in the Group for Autism. A strategy paper, Fulfilling assessment (Loynes 2001). and Rewarding Lives (Department of Health Provide all children who have received a (DH) 2010a), was produced with a three-year diagnosis and thereby a statement of ASD delivery plan (DH 2010b) and guidance to with a ‘transition plan’ for progression into implement the strategy (DH 2010c). However, adult services. Before the act, an inquiry into a critique of the implementation of the Autism ‘transition’ found that: ‘Transition services Act 2009 to date suggests that local authorities are still failing most young people on the are not required to measure themselves autism spectrum’ and that: ‘Getting it wrong against the outcomes and ambitions in the for a young person on the autism spectrum implementation guidance, which may result can have catastrophic consequences that in varying levels of implementation of the act may be irredeemable because of their (Walsh and Hall 2012). inherent difficulty with new situations’ Walsh and Hall (2012) also question the (Allard 2009). level of integration across mental health and Ensure that adults with autism are involved intellectual disabilities services of the strategy in local service planning. Local authorities paper and of signposting to specialist services. were unaware of the number of people A review of Fulfilling and Rewarding with an ASD living in their locality, despite Lives (DH 2010a) was undertaken and The having to be able to identify them to plan to Strategy for Adults with Autism in England: meet their individual needs adequately. An Update (DH 2014) was produced. This The Equality Act 2010 replaced most of the report generated 15 priority challenges for Disability Discrimination Act 1995. The action that reflected a more personalised care Equality Act requires ‘reasonable adjustments’ and choice agenda. These priority challenges to the way things are done in public services were expected to deliver the specific legislative – for example, changing a policy, changing requirements of the Autism Act 2009, the structure of a building or providing which seeks to: information in an accessible format. It is Provide all staff with statutory training in inappropriate to wait until a person with a autism, with front line staff required to disability seeks to use a service because the have more specialist training in meeting act requires public sector organisations to be ©RCNi October :: 2015 3 Autism_2015 02-23.indd 3 14/09/2015 11:38 ESSENTIAL GUIDE Developing specialist skills in autism practice proactive in identifying the needs of disabled and rewarding lives within a society that people. This guide will explore how services accepts and understands them. They can get a might anticipate the needs of people with diagnosis and access support if they need it and autism. Its aims are to: they can depend on mainstream public services Explore an understanding of autism in to treat them fairly as individuals, helping adulthood (or transition to adulthood) that them make the most of their talents.’ helps practitioners to provide a positive The number of people diagnosed with autism experience for people with autism seeking to has increased globally and in one Scandinavian access services in health and social care. study has been found to have increased eightfold Review how this knowledge may help (Idring et al 2014) with the increase attributed professionals to identify and plan to meet the to diagnosis of ASD in people without needs of adults with autism, while making intellectual disabilities. There has been a ‘reasonable adjustments’ to the services. broadening of the diagnostic criteria for autism Provide a clear pathway for the (Idring et al 2014, Chamak and Bonniau 2013) development of leaders in the field of autism as well as an increase in the diagnosis of adults. in health and social care to ‘champion’ the The rise in the rate of diagnosis of autism implementation of the Autism Act 2009. in England has been influenced by increased This guide is intended for people in specialist awareness raising through the introduction of roles who will lead and influence the three National Institute for Health and Care planning, development and commissioning Excellence (NICE) guidelines (NICE 2011, of services with local authorities and clinical 2012, 2013) and one quality statement (NICE commissioning groups. Most GPs think that 2014) on autism. they need additional guidance and training to It is hoped that the guidelines and the quality manage patients with autism more effectively statement will reduce variations in clinical (National Audit Office 2009) and the Royal practice by requiring every district to set up College of General Practitioners (RCGP) has a multi-agency team with responsibility for identified autism as an area of clinical priority. providing an autism diagnostic service. A single The RCGP has various resources on its point of referral should be made to the team website shared and updated by champions and all team members should be clear about who share best practice in this area (www. the process. Diagnosis should start within three rcgp.org.uk). In addition, a comprehensive months of referral. In addition, the team should clinical text book has been produced for GPs provide training to professionals to ensure (Durand 2014) as well as more autism-specific that they are aware of the signs of autism. This resources to promote ‘well health’ among should include training for GPs. people with autism (Geslak 2014). The widening of the diagnostic criteria has Although the employment, police and generated some concern that the condition of probation services are not legally required to autism is still overwhelmingly defined through respond to the Autism Act 2009, the Autism the lens of a ‘medical model’. The medical Strategy (DH 2010a) and Statutory Guidance model has been critiqued for emphasising (DH 2010c) could help improve the services deficiencies, ‘pathologising difference’ and in these areas. The vision of the act is that: ignoring each person’s qualities (Mogensen ‘All adults with autism are able to live fulfilling and Mason 2015). 4 October :: 2015 ©RCNi Autism_2015 02-23.indd 4 14/09/2015 11:38 Mogensen and Mason (2015) also argue Processes, by exploring how appointments that the findings from their research suggest can be scheduled better. too much focus on the negative connotations Written communication, by exploring how attached to the diagnosis and they call for a this can be better presented to enable more minimising of stigma and marginalisation effective processing by people with autism. associated with the diagnosis of autism. This Verbal communication, by exploring how is supported by Dr Temple Grandin (Grandin this and non-verbal communication can be 1996), a woman with autism, who calls for a adapted to ensure better understanding by rejection of the stigma associated with autism the person with autism. and for the condition to be recognised as This guide also discusses the development ‘difference’ rather than ‘detriment’. If good of the skills in, and knowledge of, autism information is provided by professionals at an practice. These include: individual level, a diagnosis of autism can be Autism as a sensory perception impairment. positive and can help the person so diagnosed The use of an environmental audit to ensure form a better understanding of the condition organisation-friendly access for people (Mogenson and Mason 2015). with autism. The Autism Strategy (DH 2010a) outlines The use of a communication profile to develop the need for staff to have training in autism. But, a personalised pathway through health unless training helps staff to develop their skills and social care, and to make reasonable in making reasonable adjustments under the adjustments as part of the person’s care plan. Equality Act 2010, little will change in the lives A systematic approach to understanding of people with autism and their families.