An independent guide to quality care for autistic people

An independent guide to quality care for autistic people

Introduction

The National Autistic Taskforce is wholly run and managed by autistic people and is funded through an open grant from The Shirley Foundation. This guide is authored entirely by autistic people with extensive collective knowledge and experience of social care provision to autistic people.

This guide is intended to apply to the whole autism spectrum and to both children and adults. We explicitly include autistic people with and without learning disabilities; those considered to have complex needs; those who do and don’t use speech to communicate; those considered to display “challenging behaviour”; those with dual and additional diagnoses of all kinds; those with and without ‘forensic’ history. The guide covers all care settings, including: conventional housing options, whether alone, with others or with family members; those who are homeless; shared lives and similar arrangements; all forms of supported living; residential care environments and (whilst we believe that all care can and should be delivered in community settings) institutional environments such as Assessment and Treatment Units, Psychiatric Units, Secure Psychiatric Hospitals and Units, Secure accommodation, prisons, Young Offender’s Institutions and any other environment in which an autistic person lives. This guide has been written primarily with Care Providers, Care Commissioners and Inspectorates as the target readership. However, readers from other care contexts are encouraged to creatively consider how these recommendations can be implemented in their unique circumstances.

This guide places a heavy emphasis on the development of autonomy. The more autonomy a person has, the less support services need to rely on external authorities such as good practice guides, instead looking to the person themselves as the primary source of information, instruction and guidance. The intention is to move beyond co-production towards autistic leadership. This guide sets out some of the practical details involved in achieving self-determination for autistic people.

April 2019

 

 

Executive Summary

Key elements of quality care:

1. Respect and promote autonomy1

  • Make the protection of service users’ autonomy a core priority.
  • Facilitate choice and control over major life decisions and not just everyday
    choices, seeking to increase capacity.
  • Make reasonable adjustments to support decision making.

2. Support communication effectively throughout the lifespan2

  • Routinely use, offer and be receptive to alternative forms of communication.
  • Meet the Accessible Information Standard.
  • Provide, facilitate and/or advocate for each service user’s personal ownership
    of and routine access to assistive technology.
  • Have a designated member of staff (preferably a Communication Support Worker) responsible for finding the most appropriate communication systems for individuals.

3. Provide care which is autistic person-centred3

  • Ensure that person-centred care genuinely promotes autonomy.
  • Ensure a minimum of staff variation and match staff to autistic people on
    the basis of shared interests and mutual compatibility whenever possible.
  • Question the intended outcome of programmes and approaches.
  • Plan changes in advance whenever possible.
  • Support and facilitate the development of autistic identity.

4. Tackle environmental and other stressors4

  • Conduct regular sensory reviews of environments focussed on the removal of
    environmental and other stressors as a priority.
  • Provide appropriate sensory adaptation equipment.
  • Prioritise autistic sensory needs including access to safe, appropriate ways
    to meet sensory needs.
  • Facilitate and accept sensory stimulation behaviours (‘stimming’).

5. Remove barriers to access5

  • Ensure prompt and effective access to advocacy.
  • Ensure full involvement in best interests decision-making processes.
  • Recognise the risks of barriers to healthcare, ensure access to
    preventive health checks and screening.
  • Challenge discriminatory treatment of autistic people in health, social
    care and community environments.
  • Facilitate access for autistic people to the full rights of citizenship and rewarding activities to
    contribute to society in ways which are meaningful to them.
  • Ensure equality of access for all autistic people to technology and the internet.

6. Fight stigma and discrimination6

  • Create and sustain a rights-based approach to care.
  • Actively support the right of autistic people to choose where and with whom they live on an equal basis with others in society.
  • Commit to the principle that no autistic person requires long-term institutional care and make real, effective and measurable progress towards all autistic people living in the community.
  • Encourage and promote positive risk taking.
  • Promote a positive and accepting attitude to autistic identity and differences.
  • Discourage assumptions.
  • Recognise and challenge bullying.

7. Recognise behaviour as distress7

  • Treat the use of all forms of restraint as failures and aim for zero restraints.
  • Don’t blame autism. ‘Challenging’ behaviours are not an inevitable consequence of autism.
  • Don’t label people as ‘complex’, seek to understand and empathise with their perspective.
  • Do not remove choice and control from an autistic person.
  • Challenge proposals/decisions to remove an autistic person from their local community.
  • Modify the environment to meet needs, look for underlying causes not just triggers.
  • Work with not against the autistic person – supporting them to manage stress and recover from distress.
  • Avoid focussing on behaviour ‘management’ at the expense of meeting needs.
  • Support autistic people to find practical ways to meet their needs which minimise overall harm to themselves and respect the rights of others.
  • Recognise when service policies, placement environments or particular staff are not the right match for an individual.
  • Identify when stretched public resources are leading to short term decisions which are unlikely to be cost effective in the long term.

8. Ensure better transitions8

  • Take a ‘whole life’ approach: recognising and planning well in advance for transitions throughout the lifespan.
  • Be honest with autistic people about transitions and prepare.
  • Recognise that uncertainty and unpredictability cause stress.

9. Ensure ongoing, practical, autism-specific staff training9

  • Provide regular access to advanced, practical training (‘awareness’ is not enough).
  • Ensure that training is autistic-led and/or autistic-designed rather than merely
    having tokenistic involvement of autistic people.
  • Provide ongoing support and development for staff which embeds relevant learning and encourages positive risk taking and focuses on human rights.
  • Embed respect, appropriate boundaries and empathy for autistic perspectives.

10. Accept difference10 and support positive autistic identity11

  • Avoid imposing ideas of what is ‘normal’.
  • Accept choices to refrain from or withdraw from social interaction and to maintain sameness and routines, while recognising difficulties/barriers to coping with changes.
  • Facilitate access to autistic-controlled space and the wider autistic community.
  • Recognise autism and facilitate access to diagnosis.

 

Background

The National Autistic Taskforce was established in January 2018 to give autistic adults a stronger voice in the decisions and directions of our own lives – especially those with highest support needs and, often, least autonomy. We draw on deep knowledge of rights and obligations, already enshrined in law but not reliably respected in practice, to increase autonomy in autistic lives. We seek to ensure autistic voices are included alongside those of families, policy makers and professionals. We seek to draw on the collective knowledge and experience of autistic adults to inform and improve care and support, especially for autistic adults whose own voices are rarely heard.

The National Autistic Taskforce is an innovative new body that aims to improve the chances for autistic people to have control over their own lives. It will look to challenge government and local communities to deliver the support, services and opportunities that autistic people are entitled to.

Why has the National Autistic Taskforce been established?

Over the past two decades, a number of new laws, policies and guidelines have been introduced to give autistic people more personal autonomy and choice. But autistic people and their families and carers know that too often the reality does not match the rhetoric. Many of the gaps in provision were highlighted in The Autism Dividend, a comprehensive study of the effectiveness and cost-effectiveness of autism interventions, undertaken by the National Autism Project and published in January 2017.

The report found that government policy, support and services are often not based on sufficient evidence, that research to find out what services work best is underfunded, and that decision makers often do not understand that providing better services could help save money. The report has been shared widely and formed the basis of a number of meetings and discussions with policy makers and research funders through 2017.

Critical to the success of the National Autism Project has been an advisory panel of autistic people who provided expert input and critique throughout.

To help build on the momentum of this positive experience, the National Autistic Taskforce has been established to enable the voices and knowledge of autistic people to continue to impact national policy and local delivery.

 

1. Respect and promote autonomy

Recommendations for Care Providers:

  • Make the protection of service users’ autonomy a core priority of your service12
  • Facilitate choice and control over major life decisions and not just everyday choices13
  • Provide training, development and support for autistic people to increase their capacity to make their own decisions and control their own support14
  • Recognise the difference (and potential conflict) between autonomy and independence
  • Actively support decision making and seek to increase each individual’s capacity to make their own decisions15
  • Ensure reasonable adjustments have been made to enable autistic people to make decisions – such as providing information in accessible formats and quiet time to think and process16
  • Actively support the development of self-advocacy skills and avoid encouraging unquestioning compliance
  • Respect an autistic person’s right to say ‘no’ and recognise the difference between this choice and difficulties/barriers with accessing options
  • Respect the rights of all people to privacy, dignity and the maximum possible control over their own lives
  • Respect the right to make unwise decisions17 and prioritise clients’ human rights over perceived risks to organisational or personal reputations
  • Recognise the rights of people to full, honest information about their own lives18 – including when they might react adversely to the information
  • Regularly review and question restrictions, seeking to minimise them19
  • Ensure that staff are familiar with and actually follow care plans in practice.

 

“Autistic people often express the wish for greater autonomy – more choice in the opportunities available to them and greater control over decisions that affect their lives” 20

Autonomy, a person’s control over their own life, is fundamental to being an adult member of society. With kindness and the best of intentions, those providing care to disabled people can very easily and without realising it undermine this important right. This can be challenging for care providers to prevent, but without personal autonomy, support staff and indeed entire health and social care systems are essentially guessing at the ‘right’ thing to do.

A particular challenge is that: “the rights of autistic adults to autonomy … includes the right to make decisions that others may consider unwise.” 21

A good service for autistic adults is one in which their right to be adults and have control of their own lives is deeply respected. A good service for autistic children is one in which their right to be treated in age appropriate ways, experience risk and develop decision making skills is respected and promoted. A good service will support autistic children to grow into adults who understand they have power and responsibility as well as rights. Staff, service users, family, friends and other interested people must feel confident and comfortable in recognising and
challenging policies, practices and assumptions which are risk averse or undermine autonomy.

Policies to encourage and enable positive risk taking in all areas of life must translate into day to day practice. Care planning and reviews should explicitly consider whether autonomy has increased and, if not, how care and support should change to increase autonomy.22

“Of particular concern are interventions that may train autistic people to be unquestioningly compliant, increasing their vulnerability.” 23

A good service for autistic people recognises that the ability to not comply is vital to effective safeguarding24 of both adults and children and actively encourages and respects genuine choices while ensuring that barriers to access are addressed.

“Proxy decisionmakers who are not usually autistic themselves tend to make decisions in terms of what autistic people lack. They are seldom told by autistic people what a good autistic life is like. An autistic person may not place a high value on a trait that non-autistic people consider essential, and may have, and value, abilities or affinities that have never occurred to non-autistic people.” 25

A good service for autistic people recognises and respects autistic norms and perspectives and does not assume that what is ‘normal’ for non-autistic people is necessarily best for autistic people. Care plans clearly reflect and respect individual needs and preferences, including for:

  • Meaningful contribution to society (and what the individual considers meaningful)
  • Communication and interaction with specific individuals and in general
  • Breaks, rest and downtime
  • Balance between repetition, sameness and familiarity versus change, variety and new experiences
  • Sensory needs
  • Principles to allow flexible and creative support, including individualised relationships with support workers based on mutual interests and strengths

 


Good Practice Example

Queensmill School

Beginning with purpose-built facilities, our aim is to provide an environment that is uniquely tailored to the sensory processing challenges we know, from evidence and research, that people on the spectrum experience.Our building operates under ‘low-arousal’ principles: muted colours, acoustic attenuation in the building fabric, reduced visual stimuli – all to ensure the children and young people (CYP) learn in an environment designed for them. We believe this is the absolute minimum respect we should give to those placed in our care. In making the curriculum accessible, we begin by addressing how CYP can communicate and access information. We employ a host of ‘transactional supports’ to facilitate meaningful engagement between staff and students and to enable CYP to access the curriculum and activities autonomously, both within school and out in the community. The aim is to ensure that CYP make significant gains in communicating independently, across a range of settings and contexts and therefore self-advocate. In parallel, where CYP become distressed or ‘dysregulated’, we encourage them to progress in their ability to seek appropriate help (mutual regulation) with adult support, or, self-regulate, ie seek to independently overcome stress, anxiety or sensory overload.

Our curriculum, approach and aspiration for each of our young people is to promote autonomy because we know this is integral to maintaining their well-being and a positive working relationship. We are committed therefore to enabling each CYP to make their own decisions whether these are right or wrong (as viewed by others). In the secondary phase, as young people transition to adulthood, our focus is to prepare students as fully as we can to become independent young adults.

It is essential that the CYP have the understanding, assertiveness and supports to say ‘No’ and to report when something wrong has happened. Within this context, where young people make choices that may be inadvisable or against what they have learned via the programme, we aim to educate and respect choices rather than deny their right to do so altogether. A case in point recently occurred with a young lady on our supported internship programme at West Middlesex Hospital. Being over 18 and working in an adult environment, she began interacting with colleagues at the hospital and shared her phone number quite indiscriminately. We did have some suggestions from the hospital and parent that we prevent her from ever doing so again, by banning her use of her phone, and prohibiting the sharing of her number in future. Our own view was that we provide further contextual education to enable her to make informed choices about the implications of her actions while honouring her right to make ‘wrong’ choices.

2. Support communication effectively throughout the lifespan

3. Provide care which is autistic person-centred

4. Tackle environmental and other stressors

5. Remove barriers to access

6. Fight stigma and discrimination

7. Recognise behaviour as distress

8. Ensure better transitions throughout the lifespan

9. Ensure ongoing, practical, autism-specific staff training

10. Accept difference and support positive autistic identity

Appendix A – People