Support and Enable: An Independent Guide to Quality Care for Autistic People
Dr Yo Dunn, Consultant, National Autistic Taskforce
Earlier this year, the ground-breaking ‘Independent Guide to Quality Care for Autistic People’ was published by the National Autistic Taskforce which is wholly run and managed by autistic people. This vital new guide is designed for those who commission or provide care and support to autistic people and those who inspect such services right across the UK. It is also of interest to autistic people, families and friends and to policy makers as an aid in identifying high quality services. The guide sets out an independent view of what constitutes good quality care and support for autistic people. It is relevant and applicable to the whole autism spectrum (with and without learning disabilities), to both children and adults and to a range of care and support settings.
The guide sets out 10 key elements of quality care, relates these to generic Health and Social Care Standards used by regulatory bodies, and provides a detailed autism-specific vision of what ‘good’ care looks like. A brief summary is set out here, but you can download the full guide at: www.nationalautistictaskforce.org.uk. Some of the recommendations pose significant challenges and many involve system-wide changes to fully realise. However, each organisation can meaningfully contribute to improving care by striving for and promoting these principles.
The 10 key elements are:
1. Respect and promote autonomy
This means focussing on supporting autistic people (including those with learning disabilities and those who may be deemed to lack mental capacity) effectively to make more of our own decisions, especially about major issues like where we live. To do this, services should make and advocate for reasonable adjustments, such as providing information in alternative formats and ensuring the person has time to process information. It also means seeking to increase our skills and experience at decision making.
2. Support communication effectively throughout the lifespan
This means routinely using, offering and being receptive to alternative forms of communication throughout services at all levels. For example, using pictures, photographs, diagrams or symbols; objects; apps and technology; switches/buttons; sensory items; writing, text messages, email or other text-based communication, as appropriate to the individual. It also means developing a specialist Communication Support Worker role, to be responsible for exploration based on observations and trials to find the most appropriate communication systems for individuals. This must include continuous assessment and review of each services users’ preferred form(s) of communication, including the development of functional communication (the ability to communicate needs) and the introduction of assistive technology.
3. Provide care which is autistic person-centred
To achieve this, services need to ensure that person-centred care genuinely promotes the autonomy of the autistic person (as distinct from the views of their family members, care providers and care commissioners) and reflects their individual needs. This includes needs for downtime, limiting social interaction and detailed preparation for changes. We encourage services to minimise staff changes and match staff to autistic people on the basis of shared interests and mutual compatibility whenever possible. Being autistic person-centred, also means questioning the focus, not just the effectiveness, of programmes and approaches including those designed to manage behaviour. This means ensuring the goals are to maximise the autistic person’s well-being and functioning and reduce distress, rather than trying to make an autistic person more ‘normal’ or training them to stop displaying distress.
4. Tackle environmental and other stressors
To achieve this, services should carry out regular sensory reviews of environments where autistic clients spend time, utilising the expertise of autistic people to identify sensory issues, and ensure all staff respect individual sensory preferences (e.g. for touch). Provide or ensure provision of regular and frequent access to safe, appropriate ways to meet sensory needs: from protective adaptations (such as noise-cancelling headphones), through opportunities to gain strong sensory feedback (such as trampolines or access to open outdoor spaces), to facilitating and accepting sensory stimulation behaviours (‘stimming’). This also means prioritising autistic needs for
• accurate, honest and specific information; • routine, structure and predictability; • preparation for transitions/changes.
Finally, a good quality service is one which recognises ‘challenging’ behaviour as an indication of distress and focuses on the removal of environmental and other stressors as a priority over modification of the behaviour.
5. Remove barriers to access
This requires consideration of advocacy and the full involvement of autistic people in all areas of our lives. Particular emphasis is placed on health inequalities and the importance of actively facilitating access to healthcare and promoting reasonable adjustments to remove barriers and increase accessibility. This also means facilitating access to rewarding and meaningful activities, to mainstream services and enabling autistic people to exercise the full rights of adult citizens. This must include equality of access to up-to-date technology and the internet.
6. Fight stigma and discrimination
This means committing to the principle that no autistic person requires long-term institutional care and making real, effective and measurable progress towards all autistic people living in the community, actively supporting the right of autistic people to choose where and with whom they live on an equal basis with others in society. Services are encouraged to create and sustain a rights-based approach to care, providing ongoing support, training and development for staff which effectively embeds rights-based thinking and positive risk taking in day-to-day practice. This also means discouraging beliefs and assumptions about any individual’s capabilities and supporting lifelong learning, development and meaningful contribution to society.
7. Recognise behaviour as distress
This means recognise ‘challenging’ behaviour as an indication of distress and focussing on the removal of environmental and other stressors as a priority over modification of the behaviour. To do this, we recommend treating the use of any physical intervention, pharmaceutical control of behaviour or any other form of restraint as a failure and seeking to create a zero-restraint service. To achieve this, it is vital to challenge assumptions and recognise that ‘challenging’ behaviours are not an inevitable consequence of autism and avoid labels such as ‘complex’. It means seeking to understand and empathise with an autistic person’s perspective, focussing on meeting needs and supporting them to manage stress and recover from distress.
8. Ensure better transitions
This means recognising that uncertainty and unpredictability cause stress and taking a ‘whole life’ approach: recognising and planning well in advance for transitions throughout the lifespan.
9. Ensure ongoing, practical, autism-specific staff training
This means ensure that staff training promotes empathy for autistic perspectives. Services should provide regular access to advanced practical training in working with autistic people for all staff who are or may be working with autistic people, ensuring that such training is autistic-led and/or autistic designed.
10. Accept difference and support positive autistic identity
This means recognising when someone may have undiagnosed autism. It also means avoiding imposing ideas of what is ‘normal’ and accepting atypical choices such as to withdraw from a social interaction or to prefer sameness over variety. Services should also facilitate access, for autistic people right across the spectrum, to autistic-controlled space and the wider autistic community.
Care and support services can use the guide to develop or review their provision, ensuring that they not only provide support to autistic people, but also enable and empower autistic people within an environment consistent with developing and maintaining a positive autistic identity. The guide is illustrated throughout with good practice examples which demonstrate how each element can be effectively realised in a variety of care and support contexts. This brief article can only outline the contents of the guide and readers are encouraged to read the guide in full.
Providing this specific and detailed picture defining high quality care for autistic people empowers service users to evaluate the quality of support they receive, enables providers to demonstrate the quality of their provision and empowers care commissioners to identify elements of quality in their commissioning decisions.