Summary of Responses by Question

dialoguebydesign making consultation work Adult Autism Strategy consultation A summary of the submissions received in response to the online consultation Prepared for the Department of Health By Dialogue by Design Ltd January 2010 Adult autism consultation summary report – January 2010 Page 1 dialoguebydesign making consultation work Table of contents 1. Executive Summary ...............................................................................................3 2. Introduction ............................................................................................................5 2.1. Background..................................................................................................5 2.2. How the consultation process was managed...............................................5 2.3. Responses...................................................................................................5 2.4. Participation statistics ..................................................................................5 2.5 Reading this summary and interpreting the results......................................9 3. Consultation overview ..........................................................................................10 3.1. Summary of responses to this chapter.......................................................10 3.2. Standard consultation questions ................................................................11 3.7. Easy-read consultation questions ..............................................................26 4. Social inclusion ....................................................................................................35 4.1. Summary of responses to this chapter.......................................................35 4.2. Standard consultation questions ................................................................36 4.8. Easy-read consultation questions ..............................................................55 5. Health...................................................................................................................67 5.1. Summary of responses to this chapter.......................................................67 5.2. Standard consultation questions ................................................................68 5.8. Easy-read consultation questions ..............................................................88 6. Choice and control ...............................................................................................95 6.1. Summary of responses to this chapter.......................................................95 6.2. Standard consultation questions ................................................................96 6.8. Easy-read consultation questions ............................................................112 7. Access to employment and training....................................................................120 7.1. Summary of responses to this chapter.....................................................120 7.2. Standard consultation questions ..............................................................121 7.8. Easy-read consultation questions ............................................................138 8. Awareness raising and training ..........................................................................148 8.1. Summary of responses to this chapter.....................................................148 8.2. Standard consultation questions ..............................................................149 8.7. Easy-read consultation questions ............................................................163 9. Further comments ..............................................................................................169 9.1. Summary of responses to this chapter.....................................................169 Appendix 1 – Respondents ....................................................................................176 Appendix 2 – Group tables.....................................................................................181 1. Consultation overview and chapters ........................................................181 2. Social inclusion chapter ...........................................................................190 3. Health chapter..........................................................................................202 4. Choice and control chapter ......................................................................212 5. Access to employment and training chapter ............................................223 6. Awareness raising and training chapter ...................................................235 7. Further comments....................................................................................242 Appendix 3 – Glossary ...........................................................................................245 Appendix 4 – Autism Anglia Responses.................................................................247 Autism consultation summary report – January 2010 Page 2 dialoguebydesign making consultation work 1. Executive Summary The Department of Health’s A Better Future — A consultation on a future strategy for adults with autistic spectrum conditions has attracted responses from a wide range of people and institutions, including people with an autistic spectrum condition (ASC), their families and carers, professionals involved with people with an ASC, and campaigning organisations. Respondents to this consultation commented on some or all of the questions posed in the consultation either via the standard consultation, the easy-read version or sometimes both. Throughout the responses to all questions, respondents express frustration at the way people with an ASC are so little understood not only by the public at large, but often by the professionals who determine the care they receive and the quality of their lives in terms of housing, education and employment. A theme which emerges in response after response is a sense that there needs to be a concerted effort to raise awareness and understanding both of what it means to have an ASC, and what it means to be the carer of someone with an ASC. There is a strong sense in responses that this increase in understanding needs to include more differentiation between different types of ASC, in particular between high-functioning and low-functioning conditions; and that generalisations about people with an ASC need to be replaced by an appreciation of the abilities and needs of each individual with an ASC. This leads to the call for services that are designed for each individual, which in turn means developing well-funded and resourced local services that can be provided by specialist teams using multidisciplinary approaches within a national framework. Many people call for advocacy and training, or support for self-advocacy, as an empowering way of ensuring personalised services. There are particular problems expressed within the responses, such as the difficulty for adults to get an ASC diagnosis in the first place and thus enable them to access services and support. There is a suggestion that a national standard for such diagnoses is required, and that this standard should be recognised by bodies other than the National Health Service. There are also concerns that there need to be efforts to prevent adults with an ASC being labelled as having learning difficulties if their IQ is under 70, or having a mental health problem if it is over 70, or falling into the gap between the two – and being denied access to services as a result. Respondents argue that health professionals need to be aware of the other health problems, both physical and mental, to which an ASC can lead and that such problems can mask the underlying existence of an ASC. Once a diagnosis of an ASC has been achieved, respondents would like to pave the way to lifelong care and support for those with the most serious conditions. They would also like to see an appreciation of the difficulties many experience with crowded and noisy environments such as doctors’ surgeries, hospital waiting rooms, and public transport. Those with sensory sensitivities may need living, learning and Autism consultation summary report – January 2010 Page 3 dialoguebydesign making consultation work working environments that take careful account of these sensitivities if they are to avoid further problems and lead even approximately normal lives. A theme which is raised by a great many respondents across all the sections is the need for the provision of adequate and supported housing so that people with an ASC can live more independent lives. Respondents talk in detail about the need for trained professionals in many walks of life to be available to help explain and guide people with an ASC. Respondents provide examples from experience of the difficulties they have engaging with many aspects of life such as seeking employment, housing and benefits. There are few examples in the consultation responses of positive experiences with these services and correspondingly many people also talk of how easy it is for ASC behaviour to be misinterpreted and for them to fall foul of the criminal justice system. There are many calls for people working within the judicial system to be trained to deal with people with an ASC better. Another issue that recurs throughout the consultation is the need for improved transition planning: how the shifts from childhood through adolescence to adulthood are managed and the

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