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
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.