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At Cheshire and Wirral Partnership NHS Foundation Trust (CWP), we have a vision for autistic people, including those with autism and intellectual disability.
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Our Vision is to deliver a positive experience for all autistic people whether they are accessing our services or working in our organisation. We will do this by:
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This animation has been developed to help illustrate how we can improve experiences for autistic people when accessing health and care services.
The National Strategy for autistic children, young people and adults: 2021 to 2026 (referred to as National Strategy throughout this document), describes autism as
“.. a lifelong developmental disability that affects how people perceive, communicate and interact with others, although it is important to recognise that there are differing opinions on this and not all autistic people see themselves as disabled.
.. Autistic people see, hear and feel the world differently to other people. Autism varies widely and is often referred to as a spectrum condition, because of the range of ways it can impact on people and the different level of support they may need across their lives.
“…Some autistic people will need very little or no support in their everyday lives while others may need high levels of care, such as 24-hour support in residential care. People may need help with a range of things, from forming friendships, coping at school, managing at work, or being able to get out and about in the community.”
As a health care provider, our clinical services work to implement the guidance set out by the National Institute for Clinical Effectiveness, which describes autism as:
“… a lifelong neurodevelopmental condition, the core features of which are persistent difficulties in social interaction and communication and the presence of stereotypic (rigid and repetitive) behaviours, resistance to change or restricted interests. The way that autism is expressed in individual people differs at different stages of life, in response to interventions, and with the presence of coexisting conditions such as learning disabilities (also called 'intellectual disability'). Autistic people often experience difficulty with cognitive and behavioural flexibility, altered sensory sensitivity, sensory processing and emotional regulation. The features of autism may range from mild to severe and may fluctuate over time or in response to changes in circumstances.”
(NICE Clinical Guideline 142, Autism spectrum disorder in adults: diagnosis and management)
In their guidance relating to Autism in under 19s, NICE also recognises that
“… autistic children and young people frequently experience a range of cognitive, learning, language, medical, emotional and behavioural problems, including: a need for routine; difficulty in understanding other people, including their intentions, feelings and perspectives; sleeping and eating disturbances; and mental health problems such as anxiety, depression, problems with attention, self-injurious behaviour and other challenging, sometimes aggressive behaviour. These features may substantially impact on the quality of life of the individual, and their family or carer, and lead to social vulnerability.”
Across all our services, we recognise that autism is a broad-spectrum condition and that the needs of autistic people will vary considerably between individuals, regardless of their intellectual ability.
For this reason, we have chosen not to separate people with co-morbid Intellectual Disability as a distinct group in this Strategy. This is because the principles of our approach to any autistic person need to be the same across every service and all ages, but we must vary the skills and interventions we use to deliver care depending on the individual, their needs and preferences.
At CWP, our first Autism Strategy was published in 2020 and we have been working to progress our vision since then, bringing together key clinical and corporate leads in our Trust Autism Strategy Implementation Group.
Following the publication of the National Strategy, we felt it was important to review our Strategy and to directly link it to the themes within the National Strategy.
The National Strategy states that
‘There must be no limit to the ambitions of autistic people; they should have the same opportunities as everyone else in society’.
In line with the National Strategy, our goal must be to make sure autistic people from all backgrounds, ethnicities, genders, sexualities and ages, in all parts of our footprint, get the support they need to live full, happy and rewarding lives.
Our review has been co-produced and we sought input, involvement and views from
- autistic people who access our services already, and their families and carers
- people in local communities (for example parent / carer forums)
- staff in our organisation
- people from other organisations who deliver health or care services for autistic people
- commissioners of health and social care services
We have described the process we used to do this review in Appendix 1 and included some of the more detailed comments received, and how we have addressed them in this Strategy in Appendix 2. We have been grateful for the contributions of everyone involved – they have shaped our strategic aims and our implementation plan.
Autistic people have reminded us of the importance of co-design and co-production, and the need to ensure that we ‘get it right’ and do not misinterpret or assume. We feel this feedback, which we received from an autistic person accessing services, sums up this point well for us.
“Anything that will stop or at least ease discrimination against autistic people is a thing worth debate, fighting for and ensuring it is done correctly. Autistic people are just people. We all have the same right to live and to have an equitable quality of life. Improving quality of life and educating all mental health services staff about the reality of autism and how diverse everyone on the spectrum is, is to be lauded and will most definitely be of great benefit to everyone, not just those who are autistic. Understanding is always better than being unsure and making assumptions”
Stephen William Steele
Artwork by Helen’s Artsy Creations