Adult autism advocacy in the UK: a policy review

Watts, G. (2017). Adult autism advocacy in the UK: a policy review. Tizard Learning Disability Review, 22(4), 185-192. https://doi.org/10.1108/tldr-10-2016-0029

Publication date: 8 Aug 2017 Added to AutiHub: 7 Jul 2026 Type: Article Article language: English

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Publication authors
1
Publication authors identified as autistic
1 / 1 (100.0%)

Abstract

Purpose The need for advocacy for autistic adults is emphasised in many government policy and good practice guidelines. The purpose of this paper is to investigate legislation and policy relevant to advocacy for autistic adults in England and explore whether this translates into practice. It also seeks to clarify which policies can be enforced under current legislation and highlight the gaps in legislative power to ensure implementation of good practice. Design/methodology/approach This paper aims to define what is meant by autism advocacy. Relevant legislation, including human rights, disability and autism-specific guidelines, are discussed in respect to autistic adults in England. Findings Implementation of autism advocacy policy appears to vary greatly according to local and individual resources. Originality/value Autistic adults, and services that support them, may be unaware of the policies and guidelines relevant to advocacy, they may also be confused by the plethora of different guidelines or unsure how to implement these. Further research is needed to review obstacles to the practical application of autism advocacy policy.

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These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:31.

Cited references
52
Total cited references integrated for this publication.
Cited references with an identified autistic author
1 / 52 (1.9%)
Cited author occurrences identified as autistic
1 / 43 (2.3%)
Among occurrences linked to AutiHub author records: 1 / 9 (11.1%). Distinct cited authors identified as autistic: 1 / 42 (2.4%).
Cited author occurrences linked to AutiHub author records
9 / 43 (20.9%)
Distinct linked cited authors: 8 / 42 (19.0%)
Linked cited-author occurrences not identified as autistic
8 / 9 (88.9%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 8 / 43 (18.6%). Distinct linked cited authors not identified as autistic: 7 / 8 (87.5%).
  1. Kate Blamires (2015). A summary of government initiatives relating to employment for people with learning disabilities in England . Tizard Learning Disability Review, 20(3), 151-165. Emerald.
    Crossref OpenAlex OpenCitations
  2. Action for Advocacy (2002), “The advocacy charter”, available at: www.advocacyproject.org.uk/advocacy/what-is-advocacy/the-advocacy-charter/ (accessed 29 September 2016).
    Type: Other
    Crossref
  3. K. McClintock , S. Hall , C. Oliver (2003). Risk markers associated with challenging behaviours in people with intellectual disabilities: a meta‐analytic study . Journal of Intellectual Disability Research, 47(6), 405-416. Wiley.
    Crossref OpenAlex OpenCitations
  4. Patricia Howlin (2005). Outcomes in Autism Spectrum Disorders . In Handbook of Autism and Pervasive Developmental Disorders (pp. 201-220). Wiley.
    Crossref OpenAlex OpenCitations
  5. González Moreno, Andrés Santiago (2013). Diagnostic and Statistical Manual of Mental Disorders . American Psychiatric Association.
    Crossref OpenAlex OpenCitations
  6. Tiina Itkonen , Robert Ream (2013). Autism Advocacy: A Network Striving for Equity . Peabody Journal of Education, 88(1), 48-59. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  7. C. Gillberg and , E. Billstedt (2000). Autism and Asperger syndrome: coexistence with other clinical disorders . Acta Psychiatrica Scandinavica, 102(5), 321-330. Wiley.
    Crossref OpenAlex OpenCitations
  8. André Venter , Catherine Lord , Eric Schopler (1992). A Follow‐Up Study of High‐Functioning Autistic Children . Journal of Child Psychology and Psychiatry, 33(3), 489-597. Wiley.
    Crossref OpenAlex OpenCitations
  9. British Institute of Human Rights (2008), “The Human Rights Act – changing lives”, available at: www.bihr.org.uk/changing-lives (accessed 29 September 2016).
    Type: Other
    Crossref
  10. Joan Rapaport , Jill Manthorpe , Jo Moriarty , Shereen Hussein , Jean Collins (2005). Advocacy and people with learning disabilities in the UK . Journal of Intellectual Disabilities, 9(4), 299-319. SAGE Publications.
    Crossref OpenAlex OpenCitations
  11. Julian Candy , Eric Crouch (1985). Mental Health Act . BMJ, 290(6464), 324.2-324. BMJ.
    OpenAlex
  12. Challenging Behaviour Foundation (2013), “A guide for advocates: supporting people with learning disabilities who are described as having challenging behaviour”, Challenging Behaviour Foundation, Chatham.
    Type: Other
    Crossref
  13. Lisa Richardson , Julie Beadle-Brown , Jill Bradshaw , Colin Guest , Aida Malovic , Julian Himmerich (2016). “I felt that I deserved it” – experiences and implications of disability hate crime . Tizard Learning Disability Review, 21(2), 80-88. Emerald.
    Crossref OpenAlex OpenCitations
  14. Challenging Behaviour Foundation (2016), “Commissioning advocacy services for individuals with severe learning disabilities”, Challenging Behaviour Foundation, Chatham.
    Type: Other
    Crossref
  15. Department for Constitutional Affairs (2005), “Mental Capacity Act 2005 Code of Practice”, The Stationery Office, London.
    Type: Other
    Crossref
  16. Simon Whitaker , Joanne Porter (2002). Valuing people: a New Strategy for Learning Disability for the 21st Century . British Journal of Learning Disabilities, 30(3), 133-133. Wiley.
    OpenAlex
  17. Department for Education and Skills and Department of Health (2007), “Good practice guidance on working with parents with a learning disability”, The Stationery Office, London.
    Type: Other
    Crossref
  18. Michael Hearn (2010). A Guide for Advocates Supporting People with Learning Disabilities who are Described as Having Challenging Behaviour . Advances in Mental Health and Intellectual Disabilities, 4(4), 53-54. Emerald.
    OpenAlex
  19. Department for Work and Pensions (2012), “Fulfilling potential next steps: working together to enable disabled people to fulfil their potential and have opportunities to play a full role in society”, The Stationery Office, London.
    Type: Other
    Crossref
  20. Lorcan Kenny , Caroline Hattersley , Bonnie Molins , Carole Buckley , Carol Povey , Elizabeth Pellicano (2016). Which terms should be used to describe autism? Perspectives from the UK autism community . Autism, 20(4), 442-462. SAGE Publications.
    Crossref OpenAlex OpenCitations
  21. Department for Work and Pensions (2013a), “An independent review of equality 2025”, available at: www.gov.uk/government/uploads/system/uploads/attachment_data/file/320800/independent-review-of-equality-2025.pdf (accessed 29 September 2016).
    Type: Other
    Crossref
  22. Department for Work and Pensions (2013b), “The disability and health employment strategy”, The Stationery Office, London.
    Type: Other
    Crossref
  23. Department for Work and Pensions (2014), “Better working with disabled people: the way forward”, The Stationery Office, London.
    Type: Other
    Crossref
  24. (2014). Mental Health Act 1983 as Amended by the Mental Health Act 2007 . In Forensic Psychiatry (pp. 735-784). CRC Press.
    Type: Book chapter DOI: 10.1201/b15462-31 OpenAlex: https://openalex.org/W2480651615
    OpenAlex
  25. Department of Health (2001), “Valuing people: a new strategy for learning disability for the 21st century”, The Stationery Office, London.
    Type: Other
    Crossref
  26. Margaret Winzer , Kas Mazurek (2017). The Convention on the Rights of Persons with Disabilities . In The Wiley Handbook of Diversity in Special Education (pp. 1-22). Wiley.
    OpenAlex
  27. Department of Health (2007), “Mental Health Act (1983) (as amended by the Mental Health Act 2007)”, Her Majesty’s Stationery Office, London.
    Type: Other
    Crossref
  28. Catherine Lord , Susan Risi , Andrew Pickles (2004). Trajectory of Language Development in Autistic Spectrum Disorders . In Developmental Language Disorders (pp. 18-41). Psychology Press.
    Type: Book chapter DOI: 10.4324/9781410610881-7 OpenAlex: https://openalex.org/W2784561439
    OpenAlex
  29. Department of Health (2009), “Valuing people now”, The Stationery Office, London.
    Type: Other
    Crossref
  30. Department of Health (2010a), “Fulfilling and rewarding lives, the strategy for adults with autism in England”, The Stationery Office, London.
    Type: Other
    Crossref
  31. Department of Health (2010b), “Six lives: progress report”, The Stationery Office, London.
    Type: Other
    Crossref
  32. Department of Health (2014a), “The Care Act”, The Stationery Office, London.
    Type: Other
    Crossref
  33. Department of Health (2014b), “Think autism, fulfilling and rewarding lives, the strategy for adults with autism in England: an update”, The Stationery Office, London.
    Type: Other
    Crossref
  34. Department of Health (2015a), “A manual for good social work practice: supporting adults who have autism”, The Stationery Office, London.
    Type: Other
    Crossref
  35. Department of Health (2015b), “The statutory guidance for local authorities and NHS organisations to support implementation of the adult autism strategy”, The Stationery Office, London.
    Type: Other
    Crossref
  36. Emerson, E. and Hatton, C. (2008), “CEDR research report 2008: people with learning disabilities in England, working paper”, available at: http://eprints.lancs.ac.uk/9515/1/CeDR_2008-1_People_with_Learning_Disabilities_in_England.pdf (accessed 29 September 2016).
    Type: Other
    Crossref
  37. Heslop, P., Blair, P., Fleming, P., Hoghton, M., Marriott, A. and Russ, L. (2013), “Confidential enquiry into the premature deaths of people with learning disabilities (CIPOLD)”, available at: www.bristol.ac.uk/media-library/sites/cipold/migrated/documents/fullfinalreport.pdf (accessed 29 September 2016).
    Type: Other
    Crossref
  38. (2005). More than just a fad? Community Care, (1565), 28.
    Type: Other
    Crossref
  39. Lord, C. and Bailey, A. (2002), “Autism spectrum disorders”, in Rutter, M. and Taylor, E. (Eds), Child and Adolescent Psychiatry, Blackwell, Oxford, pp. 636-63.
    Type: Other
    Crossref
  40. Lord, C., Risi, S. and Pickles, A. (2004), “Trajectory of language development in autism spectrum disorders”, in Rice, M. and Warren, S. (Eds), Developmental Language Disorders: From Phenotypes to Etiologies, Erlbaum, Mahwah, NJ, pp. 7-29.
    Type: Other
    Crossref
  41. Mazars (2015), “Independent review of deaths of people with a learning disability or mental health problem in contact with Southern Health NHS Foundation Trust April 2011 to March 2015”, available at: www.england.nhs.uk/south/wp-content/uploads/sites/6/2015/12/mazars-rep.pdf (accessed 29 September 2016).
    Type: Other
    Crossref
  42. Melvin, C. (2015), “Medway advocacy project – evaluation report”, Tizard Centre/Challenging Behaviour Foundation, Canterbury and Chatham.
    Type: Other
    Crossref
  43. Mencap (2007), “Death by indifference: following up the Treat me Right! report”, available at: www.mencap.org.uk/sites/default/files/2016-06/DBIreport.pdf (accessed 29 September 2016).
    Type: Other
    Crossref
  44. Michael, J. (2008), “Healthcare for all: report of the independent inquiry into access to healthcare for people with learning disabilities”, available at: http://webarchive.nationalarchives.gov.uk/20130107105354/ www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_099255 (accessed 29 September 2016).
    Type: Other
    Crossref
  45. National Autistic Society (2013), “Advocacy and autism”, available at: www.autism.org.uk/about/adult-life/advocacy.aspx (accessed 29 September 2016).
    Type: Other
    Crossref
  46. Nyx, E.-S., Postgate, S., Green, A., Hallett, J. M., Singh, S. and Pavlinic, T. (n.d.), “Advocacy and autism”, available at: www.autism.org.uk/about/adult-life/advocacy.aspx (accessed 29 September 2016).
    Type: Other
    Crossref
  47. Office for Disability Issues and Department for Work and Pensions (2014), “Collection: strengthening disabled people’s user led organisations”, available at: www.gov.uk/government/collections/strengthening-disabled-peoples-user-led-organisations (accessed 29 September 2016).
    Type: Other
    Crossref
  48. Pring, J. (2016), “Disabled MP’s jobs warning to government: ‘do not under-estimate prejudice’”, available at: www.disabilitynewsservice.com/disabled-mps-jobs-warning-to-government-do-not-under-estimate-prejudice/ (accessed 29 September 2016).
    Type: Other
    Crossref
  49. Social Care Institute for Excellence (2014). Understanding Independent Mental Health Advocacy (IMHA) for People who Use Services . Understanding Independent Mental Health Advocacy (IMHA) for People who Use Services.
    Type: Other
    Crossref
  50. United Nations (2007), “Convention on the rights of persons with disabilities”, available at: www.un.org/disabilities/convention/conventionfull.shtml (accessed 29 September 2016).
    Type: Other
    Crossref
  51. Westminster Commission on Autism (2016). A Spectrum of Obstacles – An Inquiry into Access to Healthcare for Autistic People . A Spectrum of Obstacles – An Inquiry into Access to Healthcare for Autistic People.
    Type: Other
    Crossref