National Autistic Taskforce
Bolder Voices, Better Practice
An independent guide to
quality care for autistic people
National Autistic Taskforce
Bolder Voices, Better Practice
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.
Key elements of quality care:
1. Respect and promote autonomy 5Principle 2, National Autism Project, The Autism Dividend (2017); S2, E7, C2 & 3 CQC Key Lines of Enquiry; Principle 2 Health & Social Care Standards, S6.3.2 (d) Department of Health, Social Services and Public Safety The Quality Standards for Health and Social Care; Standard 4.2, 6.1, Welsh Government, Health and Care Standards
2. Support communication effectively throughout the lifespan 6R1.5, W3.4, C1 CQC Key Lines of Enquiry; Principle 2.10 Health & Social Care Standards; Royal College of Speech and Language Therapists (2013) Five good communication standards. London: RCSLT. S8, Department of Health, Social Services and Public Safety The Quality Standards for Health and Social Care; Standard 3.2, Welsh Government, Health and Care Standards
3. Provide care which is autistic person-centred 7Principle 1, National Autism Project, The Autism Dividend (2017); R1 + W1 CQC Key Lines of Enquiry; Principles 1 & 2 Health & Social Care Standards, S5, S8, Department of Health, Social Services and Public Safety The Quality Standards for Health and Social Care; Standard 6.1, 6.2 Welsh Government, Health and Care Standards
4. Tackle environmental and other stressors 8Recommendation 5, National Autism Project, The Autism Dividend (2017); E6 CQC Key Lines of Enquiry; Principle 5 Health & Social Care Standards; S5, Department of Health, Social Services and Public Safety The Quality Standards for Health and Social Care; Standard 2.1, 6.1 Welsh Government, Health and Care Standards
5. Remove barriers to access 95 Recommendation 4, National Autism Project, The Autism Dividend (2017), Strategic Priority 9, Northern Ireland Executive (2013) Autism Strategy and Action Plan; S6, Department of Health, Social Services and Public Safety The Quality Standards for Health and Social Care; Standard 2.1, Welsh Government, Health and Care Standards
6. Fight stigma and discrimination 106 Recommendation 6, National Autism Project, The Autism Dividend (2017); Principle 1 & 4.1, 4.2 Health & Social Care Standards; S7, Department of Health, Social Services and Public Safety The Quality Standards for Health and Social Care; Standard 6.2, Welsh Government, Health and Care Standards
7. Recognise behaviour as distress 117 S2.7 CQC Key Lines of Enquiry; 3.2.2 MacDonald, A (2018) Coming Home: A Report on Out-of-Area Placements and Delayed Discharge for People with Learning Disabilities and Complex Needs. Scottish Government
8. Ensure better transitions 128 Recommendation 7, National Autism Project, The Autism Dividend (2017), E4 & W5 CQC Key Lines of Enquiry; Strategic Priority 9, Northern Ireland Executive (2013) Autism Strategy and Action Plan, Standard 6.1, Welsh Government, Health and Care Standards
9. Ensure ongoing, practical, autism-specific staff training 139 E2 CQC Key Lines of Enquiry; Principle 3.14 Health & Social Care Standards, S8.3(g), S4 Department of Health, Social Services and Public Safety The Quality Standards for Health and Social Care; Standard 7.1, Welsh Government, Health and Care Standards
10. Accept difference 1410 Principle 3, National Autism Project, The Autism Dividend (2017) , W1 CQC Key Lines of Enquiry and support positive autistic identity 1511 Recommendation 1, National Autism Project, The Autism Dividend (2017), Chapter 2 Welsh Government (2016) Refreshed ASD Strategic Plan, S2.2 Department of Health, Social Services and Public Safety The Quality Standards for Health and Social Care: value of equality and diversity
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.
“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.” 2420 P.19 National Autism Project, The Autism Dividend (2017)
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.” 2521 P.20 National Autism Project, The Autism Dividend (2017) citing Mental Capacity Act principles
A good service for autistic adults is one in which their rights to be adults and have control of their own lives are 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. 2622 For a discussion on practical measurement of autonomy, see Centre for Analysis of Social Exclusion, (2010) Measuring Inequality: Autonomy, The degree of empowerment in decisions about one’s own life
A good service for autistic people recognises that the ability to not comply is vital to effective safeguarding 2824 Hingsburger, D. (1994). Just say know! Understanding and reducing the risk of sexual victimization of people with developmental disabilities. Eastman, PQ: Diverse City Press of both adults and children and actively encourages and respects genuine choices while ensuring that barriers to access are addressed.
“Proxy decision makers, 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.” 2925 P.19 National Autism Project, The Autism Dividend (2017)
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:
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.
Poor support for communication risks:
“Good communication reduces these risks. It enables inclusive relationships, supporting individuals to have choice, control, greater independence and improved health outcomes. Sustainable improvements in communication can only be achieved through a ‘whole systems approach’ to reasonable adjustments.” 3935 P.7 Royal College of Speech and Language Therapists (2013) Five good communication standards. London: RCSLT
A good service for autistic people is one which actively and effectively supports and enables communication throughout the lifespan.4036 6.3.2 MacDonald, A (2018) Coming Home: A Report on Out-of-Area Placements and Delayed Discharge for People with Learning Disabilities and Complex Needs. Scottish Government Staff need the skills, confidence and support to use and respect alternative forms of communication. Ownership of tablets/smart devices and routine internet access offers significant benefits and should be as normal amongst autistic people with needs for care and support as it is in the general population.4137 Murray, D & Aspinall, A (2006) Getting IT: Using Information Technology to empower people with communication difficulties. London: Jessica Kingsley Practice experience suggests significant inequality in reality and a good service for autistic people is one which actively challenges and seeks to eliminate this inequality. The development of a specialist role of Communication Support Worker (CSW)4238 Murray, D (2018) A positive proposal for further details of the CSW role within a service further supports and demonstrates commitment to this key element of good quality care.
Surrey and Borders Partnership NHS Trust
Surrey and Borders Partnership NHS Trust run an Augmentative and Assistive Communication Project whose aim is to engage and interact with service users who are autistic and have moderate to severe learning difficulties using low and high tech assistive technology, Augmentative and Assistive Communication, sensory and/or intensive interaction. The aim is to build and embed use of individualised communication systems throughout the daily lives of the people participating and routine practice of the staff working with them. Led by a dedicated AAC project lead, the project initially started working with just one service user, but now involves 25 people living in four houses.
The project has at its core the wish to find out people’s choices, dreams, desires and preferences through meaningful interactions. Most of the participants have lived in large hospital institutions for many years and have missed opportunities to converse and make choices. Interventions are regularly reviewed and adjusted as necessary to suit each individual.
The technology used in the project includes iPads, touch screen PC’s and interactive whiteboards. Tactile key ring sized objects are being designed and 3D printed to assist people who process information that way. Paper based communication books have been built and are being developed for individuals to support a visual schedule and communication.
The project lead is working to make information accessible to all, including people with complex needs. The onus is on the project lead and staff to find what works for the person – not for the person to fit some unreachable criteria.
“Autistic people are as diverse a group as any other, characterised by atypical and very uneven interests and skills. It is therefore essential for them to have support tailored to their individual needs, strengths and preferences …
The vast range of autistic individuals’ capacities and responses indicates that ‘one size’ clearly cannot fit all. Poorly adjusted intervention, and lack of timely, tailored social support, may have huge repercussions in terms of life expectancy, risk of depression, anxiety and suicide …
Coproduction requires active collaboration to achieve a mutually desirable result. The diverse nature of autism can lead to disagreement between autistic people, family members and practitioners over what constitutes benefit to the autistic individual (particularly … individuals lacking capacity) and what kinds of intervention are acceptable and effective. Ideally, a range of possibilities should be made available to suit people across the autism spectrum, and that reflect the wide variety of co-occurring conditions such as learning disability, epilepsy, anxiety or depression.”4642 P.18-19 National Autism Project, The Autism Dividend (2017)
Autistic people may have wholly different priorities, values and needs to those of nonautistic people. Even well-meaning approaches to care may be negative experiences for some autistic people when these do not respect an autistic perspective. For example:
Contrary to common advice in the care sector, it is not respectful or person-centred to speak for an autistic adult in ‘their’ voice. Do not use ‘I’ statements in care plans unless you are actually quoting the person’s own words.5046 Smull, M. (2004) Guidelines for using 1st person in writing a person centered plan, The Learning Community for Person Centered Practices
We invest a significant amount of our annual budget on staff training in autism. Teachers are given the freedom to set very personal and unique targets without the constraint of another assessment framework that isn’t sensitive to the condition of autism. Equally, where children and young people have special interests and abilities, these are incorporated so that they are motivating and engaging. All staff, while highly trained, are also placed with children according to the quality of their relationships with them as individuals.
“The very nature of autism leaves people exposed to much higher risk of stress from external demands, and a more frequent and severe experience of it. … Stresses of that intensity greatly increase the risk of anxiety and behaviour that could challenge autistic individuals themselves, their families or others.”5450 P.34 National Autism Project, The Autism Dividend (2017)
A good service for autistic people recognises the important role of managing and reducing stress in a good quality of life for autistic people and that stress levels, capacities and needs can change, even during the course of a day. All sources of stress and all times of day are regularly considered and reviewed including:
Interaction and communication
A good service for autistic people is one in which the cumulative effects of stress are recognised and autistic people are enabled to balance demands in a way which is healthy for them and maximises their ability to function and exercise autonomy.
We are privileged to occupy state-of-the art purpose-built premises, highly adapted to limit the impact of sensory and other environmental stimuli. Our Occupational Therapists monitor and evaluate the effectiveness of supports that might replace or reduce challenging or inappropriate self-stimulatory behaviours but equally, where those ‘stimming’ behaviours do not intrude or disrupt, and are in fact selfsoothing for children and young people (CYP), we teach staff to allow and respect them.
In managing behaviour, we train staff extensively in appropriate de-escalating strategies that avoid restraint. Our policies all refer consistently to environmental, social and other factors that may contribute toward CYP stress. Our main building provides CYP with access to a suite of multi-sensory rooms where they might indulge and engage their senses in a fun, social, uninhibited way because we recognise the impact environmental stress can have on CYP and the time it takes to recover. These facilities also aim to prevent stress and enable expression of self-stimulation to maintain an optimum ‘calm-alert state.’ We place this approach at the very centre of our approach to managing our environment.
Sensory audit tools5652 For example: www.aettraininghubs.org.uk/wp-content/uploads/2012/05/37.1-Sensory-audit-tool-for-environments.pdf can be useful in carrying out environmental assessments. However, these should be supplemented by input from autistic people ourselves. Ideally these will be a care provider’s own service users, but, failing that, other autistic people. A good service for autistic people protects autistic people from sensory distress in the environment where they live and/or spend substantial amounts of time.
“It is critical to improve access to healthcare for autistic people of all ages. This population have increased health risks and reduced life expectancy, yet face multiple obstacles to accessing the same healthcare that other population groups enjoy. The knock-on effect of poor access to healthcare on physical and mental health, on employment and the economy, on quality of life and mortality, leads us to request positive action now.”6359 P.2 Westminster Commission on Autism (2016) A Spectrum of Obstacles: An inquiry into access to healthcare for autistic people
“Autistic people generally have more health problems than other people, and a higher risk of premature death, including a nine-times higher risk of suicide. (We stress though that the latter figure is from a Swedish study and may not translate directly to the UK.) There are many reasons … they include aboveaverage rates of co-occurring conditions such as epilepsy and anxiety; lack of understanding and awareness about autism among health and other professionals; difficulties faced by some autistic people in recognising symptoms and expressing their needs; poor information systems; and the fact that many autistic people are economically and socially disadvantaged.”6460 P.32 National Autism Project, The Autism Dividend (2017)
A good service for autistic people takes a proactive role in advocating for autistic people in accessing healthcare services, challenging discriminatory treatment and failures to make reasonable adjustments and consistently supporting autistic people to gain effective access to healthcare. Good social care commissioning recognises that, while healthcare itself is a health need, and reasonable adjustments must be made, additional support needed to access healthcare is a social care need which must be routinely met by social care services.6561 Care Act 2014, NICE Guidance, see also 4.101, 6.81 Care and Support Statutory Guidance
A good service for autistic people recognises and supports them to challenge the inequality, discrimination and barriers which autistic people face in fully exercising their citizenship. A good service for autistic people supports, empowers and enables them to self-advocate. A good service for autistic people looks for, identifies and seeks to eliminate barriers, inequalities and discrimination within and beyond its own service.
“There are also many barriers to opportunity. … gainful use of time is not just about paid work, and opportunities must also not be closed off to other rewarding activities such as volunteering and studying.”6763 P.33 National Autism Project, The Autism Dividend (2017)
Everyone is capable of making a contribution to their society6864 An aspect of “wellbeing” defined in s.1 Care Act 2014 and s.2 Social Services and Well-being (Wales) Act 2014 in a way which is not tokenistic but, rather, meaningful and worthwhile. “In the right environment, autistic people can demonstrate particular strengths such as intense focus and attention to detail, which can result in higher productivity when compared with the neurotypical population.”6965 P.80 National Autism Project, The Autism Dividend (2017)
A good service for autistic people seeks to identify and support individual interests, skills, and strengths and to provide or facilitate the provision of an environment in which each autistic person can thrive, develop and contribute. A good service for autistic people will provide or facilitate access to lifelong learning and acquisition of skills and knowledge. Sustaining such provision will require long-term ongoing support for at least some individuals and regular reviews of support and accessibility issues for all.
“Human rights are the basic rights and freedoms that belong to every person in the world. Based on core principles that include dignity, fairness, equality, respect and autonomy, human rights protect our freedoms to control our own lives. Taken together with Britain’s Equalities legislation – and the requirements of the Public Sector Equality Duty – human rights provide a powerful framework for change to which … public services must respond. The challenge is to make these rights a reality – to move beyond simple compliance and embrace the spirit of this legislation, so that human rights become active considerations for those who deliver public services and are at the forefront of every interaction.”7672 P.3 Health and Social Care Alliance Scotland (2017) Being Human: A human rights based approach to health and social care in Scotland
“Improvements in person-centred care and values-led cultures in services play a big part in advancing equality and inclusion … But overall progress is very slow and there is potential for much more improvement. For change to happen, leaders need to proactively tackle equality issues and engage with staff and people using services.”7773 p.106 Care Quality Commission (2018) The State of Care
In a good service for autistic people, family members, friends and staff throughout the service are supported to understand and use rights-based thinking. A good service for autistic people is one where staff throughout the service believe that everyone can be effectively supported to live safely in the community, whatever their disabilities. A good service for autistic people rejects assumptions about fixed or limited capacities and provides active support for learning and development throughout the lifespan.
Good service commissioning for autistic people recognises the right of autistic people to decide where and with whom they live on an equal basis to others in society. This means recognising that some autistic people may be unable or do not wish to live with others. It also means recognising that the sensory and other needs of some autistic people may require unusual housing and support options, such as remote or rural locations, living alone and/or support not always being provided in the presence of the individual supported. This also means not requiring individuals to live with others for efficiency or cost reasons when it is not the individual’s choice to do so and ensuring that, where an adult chooses to live with others, their choices of who that should be are not constrained by commissioning decisions.
“Few autistic people or families feel that the UK general public has a good understanding of autism or what it means to be autistic. Worryingly, professionals in key positions in health, education, housing, criminal justice and other systems often appear to be untrained and under-prepared for effective engagement with autistic people. This ignorance can manifest itself in many ways [including] poor access to appropriate health and social care … anti-bullying and similar interventions are needed to offer protection from what could be a lifetime of distress and damage.” 7874 P.35 National Autism Project, The Autism Dividend (2017)
In a good service for autistic people, all staff, service users, family and interested others feel able to challenge discriminatory or inappropriate attitudes and beliefs, whoever they may be expressed by, based on a firm grasp of key legal principles around capacity, rights and equality. A good service for autistic people recognises and identifies bullying and maintains a culture which prevents bullying effectively.
Autism Voice aims to end Autism related stigma and discrimination for autistic people and their families in BAME communities and wider society in the UK. Their 2018 Symposium brought together key stakeholders to raise awareness, highlight challenges and identify ways of addressing the challenges affecting people and families affected by Autism in the Black, Asian and Minority Ethnic Community in the United Kingdom.
“Far too many children and adults with a learning disability and/or autism who display behaviours that challenge either themselves or others (‘concerning behaviours’) find themselves accommodated for long periods in unsuitable inpatient settings. … More than a third of the 2600 people with learning disabilities in inpatient settings are autistic, but progress in moving them out of inpatient settings has been slow. There are many more people currently in the community thought to be at risk of being admitted to an inpatient setting.
Supporting people in community settings … may well require a different way of understanding and managing the concept of risk. Tackling misconceptions about autism, improving awareness of how environmental factors and aspects of the built environment can easily become major stressors and providing appropriate structures and support are all necessary responses. Discrimination and inequality are also both likely to contribute to heightened levels of anxiety, with the danger that someone might get trapped in a never-ending cycle of uncertainty, anxiety, and concerning behaviour. But doing more to avoid those environmental stressors in the first place would obviously be desirable. Autism at Kingwood has, for example, undertaken work in partnership with the Royal College of Art on adapting physical environments to reflect sensory challenges and preferences in autistic people with learning disabilities, suggesting that even low-cost adaptations may be able to reduce stress.”8480 P.34 National Autism Project, The Autism Dividend (2017)
“It is worth emphasising that challenging behaviour is understood as a communication from the individual and as a product of the environment they live in and of the support they receive. It is not a diagnosis, and although it is associated with certain conditions and syndromes, it is not innate to the individual, but rather an expression of their unmet need.”8581 MacDonald, A (2018) Coming Home: A Report on Out-of-Area Placements and Delayed Discharge for People with Learning Disabilities and Complex Needs. Scottish Government
“Although this report is focused on learning disability and is framed in a learning disability context, it is clear that coexisting autism is a significant factor. Data show that nearly half of the priority to return group, and over a third of the delayed discharge group were autistic, and that those who were autistic were more likely to have challenging behaviour, more likely to be placed out-of-area in crisis, and likely to be in more expensive placements. Individuals with both a learning disability and autism can therefore be regarded as those for whom there is the most pressing need to provide more effective support.”8682 P.49 MacDonald, A (2018) Coming Home: A Report on Out-of-Area Placements and Delayed Discharge for People with Learning Disabilities and Complex Needs. Scottish Government
A good service for autistic people is one where staff try to put themselves in an autistic person’s shoes, get to know each person as an individual, and maintain a relationship with the person based on trust and respect. A good service for autistic people works with them to modify their environment to meet their needs and minimise distress. A good service for autistic people offers regular opportunities for ‘quiet’ or downtime (but does not use this punitively) and offers regular opportunities to meet sensory stimulation needs.
“The discharge of people with learning disabilities and complex needs from hospital and their return from out-of-area placements is a complex issue that appears to defy simple solutions. It involves complex interrelated processes, agencies, and services, all of which must work together for better outcomes for individuals. Unless all stakeholders work together, no one specific element is likely to be successful or sustainable. A transformational change approach is therefore required to address this issue throughout the sector; this will require an overall change in culture and approach.”8783 MacDonald, A (2018) Coming Home: A Report on Out-of-Area Placements and Delayed Discharge for People with Learning Disabilities and Complex Needs. Scottish Government
Good service commissioning for autistic people is organised locally for one person at a time. Good service commissioning for autistic people requires working together for better long-term outcomes and proactively resists short-term decision making driven by the agendas and budgets of individual bodies.
“Ever-tightening budgets and ever-present performance targets have a tendency to encourage short-termism and narrow horizons. The idea of spending now to save later or to save elsewhere – or indeed both (what is sometimes called ‘diagonal accounting’) – may be challenging for policy makers but is exactly the strategic approach needed to improve the life-chances and well-being of autistic people over the life-course.”8884 P.21 National Autism Project, The Autism Dividend (2017) see also Iemmi, V., Knapp, M., Gore, N. et al. (2016). What is standard care for people with learning disabilities and behaviour that challenges and what does it cost? British Journal of Learning Disabilities, 44, 309-31
“Transformational change involves a change of attitude and culture, a new belief in what is possible, resulting in significant changes in structures and systems. This type of change is what is required to address this problem; it will include a change in relationships and a shift in mindsets from all involved”8985 P.48 MacDonald, A (2018) Coming Home: A Report on Out-of-Area Placements and Delayed Discharge for People with Learning Disabilities and Complex Needs. Scottish Government
A good service for autistic people is located in the area in which they live and have connections.
Good service commissioning for autistic people recognises the cost effectiveness of good quality community-based support and does not allow short-term budgetary constraints to dictate decisions which are not in the long-term interests of autistic people and their local communities.
St. Clement’s School
St. Clement’s School is a Special School serving a rural catchment area in Highland, Scotland. Pupils range from 3-19 years and have a diverse range of needs. A substantial majority are autistic and many have complex needs. Under headteacher Toni Macartney, the school has undergone an improvement process which included rapid and sustained reduction in the use of restraint to zero.
At the start of the process the school needed to improve in a number of areas, particularly in the provision offered to autistic pupils, a view endorsed by Education Scotland inspectors. Highlighted weaknesses included:
Working with inspectors, the school set a goal to “identify learning needs accurately and implement appropriate strategies to overcome barriers to learning, especially for children and young people with autism spectrum disorders.”
The whole school community (staff, pupils and parents) were engaged with an autism knowledge and development programme, which focussed on supporting pupils to meet their communication, structure and sensory needs appropriately, reducing stress and distress. The school aims to maintain a zero restraints record.
“Transitions … can be stressful for anyone, but particularly so for an autistic person who seeks sameness. Instability can cause enormous anxiety, but this may not be recognised by others or responded to adequately. … Some transitions are certain to happen and their timing can be predicted …and so can be prepared for well in advance. Others are common but their timing is unknown, which requires a different kind of preparation. … There are also transitions that are always likely to be crises or emergencies such as the unexpected illness or death of the primary carer or supporter. It should now be possible to pre-empt such crises by ensuring that a full assessment of needs is in place but there is a widespread lack of implementation.”9288 P.36 National Autism Project, The Autism Dividend (2017) referring to Care Act 2014 assessment requirements
Good commissioning for autistic people requires a proactive ‘whole life’ approach, working across services and agencies to co-ordinate well-planned transitions.9389 Recommendation 4, MacDonald, A (2018) Coming Home: A Report on Out-of-Area Placements and Delayed Discharge for People with Learning Disabilities and Complex Needs. Scottish Government Good commissioning for autistic people recognises the importance of thorough preparation for transitions, works with the autistic person and others involved to ensuring planning begins early, is detailed and specific, continues consistently through and beyond the transition and that accurate, detailed and specific information is provided to the autistic person throughout.
A good service for autistic people works effectively at a strategic level to minimise uncertainty, changes and transitions within the service, including in staffing, facilities or schedules. A good service for autistic people plans well for necessary changes and transitions within and beyond the service, providing the resources and support needed to effectively prepare autistic people for transitions, including where there is limited information available. A good service for autistic people advocates for them beyond the service to maximise information and preparation for transitions.
“There needs to better awareness of the stress that any such transitions can cause autistic people: unpredictability is especially dangerous.”9490 P.36 National Autism Project, The Autism Dividend (2017)
Although often well-meant, responses from staff can make the problem worse rather than better. For example, avoiding preparing an autistic person or even lying to them about an upcoming transition, such as telling them that they are going to visit a new placement for ‘a cup of coffee’ and then leaving them there.9591 See for example p.6 Rees, K (2017) Safeguarding Adults Review: Mr. C, Hampshire Safeguarding Adults Board Such practices are usually intended to avoid upsetting the autistic person, but in reality increase distress and undermine trust.
A good service for autistic people creates and maintains relationships between autistic people and staff on the basis of honesty and trust. A good service for autistic people puts the principle “nothing about me without me” into day to day practice and staff question and challenge any withholding of information from service users. A good service for autistic people is proactive in obtaining and providing accessible information about changes and transitions, accepting and supporting autistic people with any resulting distress.
“Parents and other carers need information and support to help them to prepare, particularly when a young person with moderate or severe learning disabilities is facing the very difficult transition into the adult care system.”9692 P.36 National Autism Project, The Autism Dividend (2017)
Good service commissioning for autistic people works collaboratively with autistic people and (if they wish) their family and friends to create concrete, specific and funded plans for transitions, including crisis planning.
A good service for autistic people provides accurate, clear, specific and detailed information to and works collaboratively with the autistic person and (if they wish) their family and friends to plan and prepare for transitions.
“Essential in providing good support is having a skilled, motivated and enthusiastic staff team, who have a commitment to the work that they do, and who enjoy working with individuals with complex needs. The ability to see beyond any complex needs to the person themselves is essential, as is the ability to have a degree of empathy and understanding.
Staff are required to have an understanding that challenging behaviour serves a function for the individual and is communicating a need. Staff with knowledge about autism, particularly in terms of how it impacts people and the type of supports that might be required, would also be helpful.
Supporting people with learning disabilities and complex needs is a skilled role, which can be challenging; staff therefore need to be well trained and well supported, and pay scales should reflect the importance of the work they do.”9894 P.52 MacDonald, A (2018) Coming Home: A Report on Out-of-Area Placements and Delayed Discharge for People with Learning Disabilities and Complex Needs. Scottish Government
Most health and social care professionals and frontline care staff have had ‘Autism Awareness’ training. However, this is not sufficient to support staff to provide good care to autistic people. Issues include:
The involvement of autistic people ourselves in training is often tokenistic. Procurement requirements often insist on an autistic person or family member (usually and inappropriately treated as equivalent and interchangeable) being “involved” in the training. Often this is achieved by non-autistic professionals designing and controlling the content of training and then recruiting a token autistic person or family member to tell their personal story.
Good autism training is where autistic people have genuine input into and, preferably, leadership of the design and delivery of training.10298 See also Milton, D et al (2017) The development and evaluation of a mentor training programme for those working with autistic adults, Good Autism Practice, Volume 18, Number 1, May 2017, pp. 25-33(9) for evidence of benefits from the perspective of training participants Good autism training has content which is informed both by up to date research evidence and by drawing on knowledge from a variety of autistic people. A good service for autistic people ensures that staff in frontline care roles working with autistic people are provided with high-quality, face to face training10399 P.21 & 32 National Autism Project, The Autism Dividend (2017), 1.4 Department for Health and Social Care (2015) Statutory guidance for Local Authorities and NHS organisations to support implementation of the Adult Autism Strategy; p.11, Scottish Strategy for Autism: Outcomes and Priorities 2018-2021 (2018) in and ongoing support to maintain and develop skills in (at minimum):
A good service for autistic people ensures that staff in strategic decision-making roles (e.g. social care assessment, care planning, safeguarding) in relation to autistic people are provided with high-quality, face to face training in and ongoing support to maintain and develop skills in (at minimum):
Leicestershire Social Care Development Group (LSCDG)
The Leicestershire Social Care Development Group (LSCDG) is a partnership of private, voluntary and statutory sectors care providers. Its purpose is to provide funding, training and development for their workforce including Managers and workers across Leicester, Leicestershire and Rutland.
In 2016, the group ran a procurement exercise to commission autism training. The approach included grading proposals on a weighting of 90% quality to 10% price to ensure the commissioning of high quality, in depth, face to face training tailored to the needs of different staff groups. Particular priorities were ensuring that training focussed on giving staff practical insight into how autism can affect people and drew directly on the experiences and input of autistic people and their families. A number of the training providers considered were controlled and run by autistic people, including the provider awarded the contract. Regular training has been commissioned each year since and feedback from staff continues to be excellent.
“Assumptions that everyone wants, needs and values the same things must be confronted and reframed to determine their applicability to any individual. Infliction of conventional values may infringe individuals’ rights to self-determination.”104100 P.19 National Autism Project, The Autism Dividend (2017); Article 12 UN Convention on the Rights of Persons with Disabilities
A good service for autistic people recognises autistic identity and does not assume that what is ‘normal’ or ‘good’ for non-autistic people is necessarily right for an autistic person. A good service for autistic people accepts the validity of choices to withdraw from social interaction, to maintain sameness or routine and other unconventional life choices. However, a good service for autistic people does not allow ‘choice’ or ‘self-determination’ to be used to justify failing to provide effective support, access to services (including healthcare) and opportunities to explore new experiences.
“There is also the potential loss of connection to people who are ‘like them’ and the risk of ending up rejecting all that is autistic while not being able to pass well enough to succeed in non-autistic terms. And then, there are the adjusted expectations that the autistic person is now doing ‘so well’ that they can manage without support and have no excuse for continuing to have difficulty.”105101 P.19 National Autism Project, The Autism Dividend (2017)
A good service for autistic people facilitates access to autistic-controlled spaces and to the wider autistic community (including online). A good service for autistic people creates opportunities for autistic people to have ownership and genuine control of at least some spaces, activities or groups. Good commissioning for autistic people recognises when needs are being met well and does not mistake this for needs having gone away.
A good service for autistic people enables service-users to participate in and enjoy activities which are not therapy/interventions/ treatment. A good service for autistic people advocates for equality of access to mainstream community groups and activities and does not limit them to only accessing specifically targeted groups, services and activities.
Autscape107The Autscape Organisation is an autism conference with a difference. Rather than talking to a primarily non-autistic audience about autism, the annual conference (which has been running since 2005) is specifically by and for autistic people. The environment and content of the event are centred around autistic people’s needs, interests and sensitivities.
All varieties of autistic people from all parts of the spectrum are welcome, whether diagnosed or not. Diversity enriches the experience for everyone. Non-autistic people are also welcome at Autscape, all that is asked is tolerance, respect for ‘autistic space’ and an open mind.
There is no requirement to socialise at all, and there is no implicit or explicit disapproval of those who choose not to interact with others. There is coloured badge system for indicating whether an individual would like to socialise or not. Participants are free to enter and leave presentations at any time as long they do their best not to be disruptive. Sensory issues, and mechanisms to reduce them, are totally acceptable. Stimming (repetitive movements), echolalia, distractibility, different or impaired conversation skills, avoidance of eye contact, perseveration (obsessiveness), are expected and accepted as part of an autistic conference. Appearing (or, indeed, being) completely neurotypical (NT) is also perfectly acceptable.
Further recommendations for Care Providers:
Understanding and identification of autism has been developing and changing significantly over many years. It is thought that about 1 in 100 of the population are autistic.108103 National Autistic Society www.autism.org.uk/about/what-is/myths-facts-stats.aspx This means that it is likely that there are adults receiving care services who are autistic but have not been diagnosed. Consequently, client groups such as older adults, adults with learning disabilities and adults with mental health issues may well include some undiagnosed autistic adults.
“There are … many adults whose autism has never been identified, in part because services a few decades ago were not geared up to do so. Those adults may therefore not have received the support that could help them and their families. In addition, we do not know whether current diagnostic processes serve women and men equally well; girls are diagnosed later than boys, on average, and there is a relative lack of research on the female presentation of autism.”109104 P.26 National Autism Project, The Autism Dividend (2017)
Even where someone is already receiving care on the basis of another diagnosis, accurately identifying them as autistic can be very helpful in improving understanding of their needs.
“Timely identification and diagnosis might also help to avoid crises which result in unwanted, distressing and costly admissions into hospital, psychiatric intensive care units or residential care settings.” 110105 P.27 National Autism Project, The Autism Dividend (2017)
Good health and social care services are aware of the prevalence of autism and of conditions which may co-occur with autism and are alert to the possibility of undiagnosed autism. Good health and social care services make and follow up appropriate referrals to diagnostic services for autism and provide support to facilitate access to diagnostic services.
The following organisations support the recommendations of this guide:
Autism at Kingwood
Autism Rights Group Highland (ARGH)
Autism Voice UK
Autistic Mutual Aid Society (AMASE)
Autistic Spectrum Finland
Centre for Adults’ Social Care – Advice, Information and Dispute Resolution (CASCAIDr)
Centre for Mental Health
Consult Yo Ltd.
National Autistic Society
Shared Lives Plus
The Autism Academy UK (TAAUK)
The Participatory Autism Research Collective (PARC)
“What does good care look like for autistic people? This question has never been more pressing. This report clearly demonstrates the need to listen to autistic voices in determining how care can be improved. We know from Autistica’s ongoing work with autistic people and families that improving care is a top priority. By combining the autistic perspective with high quality evidence, we can make real progress in supporting people to live the long, happy, healthy lives they deserve.”
Dr James Cusack, director of science, Autistica.
Autistic activist, mother & campaigner, Kabie has 30 years experience working paid and unpaid with and for Autistic people of all ages and perceived ability. Kabie has specialised in supporting people labelled as having ‘challenging behaviour’ and is passionate about educating people to understand the communication styles and self advocacy attempts that can often be ignored and labelled as ‘challenging’. Kabie is cofounder and current chairperson of ARGH – Autism Rights Group Highland, a collective advocacy, lobbying and campaigning group of Autistic adults whose projects include a UK wide alert card. Kabie sits on the national Scottish Government Autism Strategy review Group as well as being involved with other national and local organisations including, ASK (Autistic Space Kit), the Inverness Access Panel and also holds a community advisor role for Police Scotland.
Karen Leneh Buckle
Leneh approaches autism research from a hard science background with degrees in neuroscience, psychology and bioethics. Having previously been awarded a Nuffield undergraduate research bursary for sensory processing in autism, and Wellcome Trust funded MA in bioethics, she is currently undertaking a funded PhD at the University of Manchester looking at initiation impairments in autism. She is also a founder of Autscape, mother of 5, speaker and trainer when she gets the chance. She is currently a member of Autistica’s scientific review panel and project co-ordinator for the National Autistic Taskforce.
Dr Yo Dunn
Yo Dunn is an independent trainer and consultant (www.consultyo.com) who works across the public sector (primarily in social care and education) with specialisms in autism and law. She has expertise on the legal framework of adult social care in particular and on a range of areas of public law relevant to the lives of autistic people including Mental Capacity law; Deprivation of liberty; Care Act; Safeguarding; commissioning; Special Educational Needs and Disability Law; health law; data protection; equality and human rights law. She provides training and consults for many English local authorities and other clients. She has a background in social policy analysis and a thorough working knowledge of professional practice issues in both adult and children’s services. She is autistic, a parent of autistic children and is deeply involved in the adult self-advocate community, having retired after many years as company secretary of Autscape. Yo is currently serving as legal and policy consultant to the National Autistic Taskforce.
Dr Damian Milton
Damian works part-time for the Tizard Centre, University of Kent as a Lecturer in Intellectual and Developmental Disabilities and for the National Autistic Society (NAS) as Autism Knowledge and Expertise Consultant. Damian also teaches on the MA Education (Autism) programme at London South Bank University and has been a consultant for the Transform Autism Education (TAE) project and a number of projects for the Autism Education Trust (AET). Damian’s interest in autism began when his son was diagnosed in 2005 as autistic at the age of two. Damian was also diagnosed with Asperger’s in 2009 at the age of thirty-six. Damian’s primary focus is on increasing the meaningful participation of autistic people and people with learning disabilities in the research process and chairs the Participatory Autism Research Collective (PARC). In January 2018, Damian also took up the role of Project Leader on the National Autistic Taskforce (NAT).
Dr Larry Arnold
Larry Arnold has a long record in disability advocacy going back more than thirty years. He was extensively involved in information provision in the 1980’s and 90’s having authored guides to service provision and designed research projects investigating the prevalence of disability in Coventry. His association with autism has included 9 years service on the board of the National Autistic Society as well as continuing involvement peer advocacy and support. More recently he has been concerned with the ethical aspects of autism research and what the implications are for the autistic community. His academic interests and qualifications span Education, Disability Studies and Media Studies. He is a Fellow of the Royal Society of Arts.
Dr James Cusack
James Cusack is Director of Science for Autistica, having joined Autistica in September 2015 following a career in autism research at the University of Aberdeen. From a young age James has also worked directly with families affected by autism, as well as having experience in clinical, educational and social care settings. James has sat on a number of advisory panels discussing the role of research in autism, and was vocal in the production of the report, ‘A Future Made Together’. He was part of a core stakeholder group which successfully campaigned for Scotland’s first ever autism strategy. James has also been a member of Autistica’s Science Review Panel since January 2014. He is proud to lead on Autistica’s strong, community-driven research strategy.
Ann Harber has lived in NHS services for most of her life. Now middle aged, she is interested in using technology, swimming and socialising; Ann is autistic with learning disabilities.
In 2012, Ryan set up awareness group Holding out a Hand in his native Northern Ireland to raise awareness of Autism amongst the general population, and particularly in teenagers. He studied Law and Politics at Queen’s University Belfast. He was diagnosed with autism in primary school, and also has ADHD. He joined Autistic UK in May 2017 and currently serves as Press Officer.
Josh is autistic and has worked as a support worker for autistic people (and people with other disabilities) for ten years. He has been a committee member of Autism Rights Group Highland for two years. He is interested in mental capacity law and supporting service users on all parts of the spectrum to develop autonomy. He has an autistic son. His academic background is in philosophy.
Willow is an independent learner and researcher with an interest in social history, disability rights and how disability has been viewed by society throughout our history. Living in North Wales, Willow is an elected Director of Disability Wales in the role of vice chair.
Previously a key worker for adults with autism and learning difficulties, and a mum to four, Willow has vast experience in supporting disabled children and adults, driving her concerns that disabled people’s rights are being overlooked.
In addition to her lived experiences as a disabled person and in advocating for her children, Willow has great insight into the barriers that society can create. With her passion for equality and diversity and desire to engage disabled people and carers with understanding their rights, Willow always aims to create positive change for others.
In Jan 2014 Willow founded The Autistic Women’s Empowerment Project. This is a user-led network for women with social and communication challenges including Autism and is currently campaigning for an Autism Act for Wales.
Katie Nurse is Ann Haber’s support person; she has worked with people on the autism spectrum for 18 years and has a Masters degree in Autism.
Dr Dinah Murray
Dinah Murray is an independent researcher and campaigner, former tutor for Birmingham University’s distance learning courses on autism (adults) and former support worker for people with varied learning disabilities, including autism. Tutoring involved reading and critiquing hundreds of practitioner research projects. Her work has been published in Autism, in Good Autism Practice, in a number of books and on-line; she has presented at numerous conferences (world-wide) on varied themes related to autism, including several years of Autscape, an annual conference cum retreat run by and for autistic people. Her autism-related research interests have included: medication and its impact on quality of life; information technology for people who don’t use speech; the ethics of autism research; the nature of the human being, with a particular focus on interests. She has been assessed as on the autism spectrum, and if growing up today would certainly have attracted an autism diagnosis.
Dr Catriona Stewart
Catriona Stewart chairs SWAN (Scottish Women’s Autism Network) which offers peer-support and advice and is committed to increasing knowledge and understanding. Currently Academic Advisor to Scottish Autism’s Right Click programme, she is conducting ongoing research into women and girls. She gives talks and training, and has had input into a range of consultations, publications and reports, including presenting to a committee of UN Women. Findings from her study on girls with Asperger’s were published in GAP, 2012. In 2015 SWAN delivered two ground-breaking Learning Events for autistic women/girls, families/carers and practitioners at Strathclyde University with Autism Network Scotland. Catriona is working towards her 2nd MSc, an applied research degree in Gender Studies at Stirling University.