Introduction and background
1. Introduction to the strategy
1.1 This is a joint Autism Strategy for adults, children and young people across Coventry and Warwickshire and is owned by the following organisations and partnership boards:
- Warwickshire County Council
- Coventry City Council
- NHS Coventry and Warwickshire Clinical Commissioning Group
- The Warwickshire Autism Partnership Board
1.2 All partners to this strategy are committed to commissioning high quality autism services and support and will work with partner organisations to improve the lives and opportunities for autistic children, young people and adults. This 5-year local strategy has been coproduced with support from a wide range of people, including autistic people and their families and people working in services and organisations that support autistic people.
1.3 The 2021-2026 Strategy builds on the achievements of the previous Warwickshire All Age Autism Strategy (2014 -2017) ‘Fulfilling & Rewarding Lives’ and the joint commissioning plan developed by Warwickshire County Council and Coventry City Council with the Warwickshire Autism Partnership Board in 2017.
1.4 It is recognised that not all autistic people require support, and that many lead independent and fulfilled lives without any help from specialist statutory or community services. The strategy is aimed at building a strengths-based approach and focusing on what people can do for themselves and where they want to get in life. Where they do need support, we will target it in the way that enables them achieve their goals.
1.5 There are many local schemes and services to support autistic people to achieve their goals, educate others about autism and make the community more accessible and welcoming to autistic people. The dedicated work of national charities and organisations and the many smaller local and national organisations and groups who work tirelessly to raise awareness day in and day out makes a real difference.
1.6 However, we know there is much more to be done. We still hear too many stories of autistic people struggling to cope with the stresses of daily life as well as navigating significant events such as moving schools, loss of friends or family and moving to a new house. We also hear about the huge amount of effort it takes (often over years) for individuals, their family members and professionals trying to understand how pathways work and how to access the support they need and are entitled to. We have heard stories about the years wasted while people wait to access support and, in the meantime, lose opportunities to achieve qualifications at school, the chance to live in a place they choose, work in a job that fulfils them and have fun with their friends and family.
1.7 It is recognised that autism sits on a spectrum and although autism is not a learning disability or a mental health condition, autistic people may also have these conditions. Equally, they may also have other physical conditions. This strategy focusses on principles that should be applied to everyone on the autistic spectrum. For those people with additional needs, this strategy should be read in conjunction with local strategies and action plans for:
- People with learning disabilities
- Special Educational Needs and Disabilities (SEND) and Inclusion
- Parenting, family and carer support
- Coventry and Warwickshire health and care partnership system plan
- Mental Health Transformation Plans for adults and CAMHS
1.8 Place based delivery plans will underpin this strategy, recognising different solutions may be required in different geographical locations across Warwickshire and Coventry. The delivery plans will describe specific commissioning activity to achieve the objectives outlined in this strategy to deliver services and support for autistic people and their carers between 2021 - 2026.
2. Co-production and strategy development
2.1 This strategy is informed by a range of co-production and mapping activity which was completed in 2019 and 2020 which was undertaken to build our shared understanding of the experience of autistic people of all ages and their families in accessing support appropriate to their needs and getting a formal diagnosis of autism. A number of new services for autistic people have been piloted since 2018 and the learning from those pilots has contributed to the strategy.
2.2 Working with Grapevine, a local advocacy organisation, people with lived experience of autism, their families, as well as professionals, service providers and commissioners, we built a shared understanding of the challenges and opportunities across the system to in supporting people with autism to stay live and remain well. Honest conversations were had around limited resources and challenges related to waiting for an assessment for a diagnosis, identifying what pre and post diagnostic support was available and whether it was meeting everyone’s needs, what could be done to make things better and what could prevent needs escalating to the point where statutory services have to get involved.
3. What is Autism?
3.1 Being autistic does not mean you have an illness or a disease. It means your brain works in a different way from other people. Autism is not a medical condition with treatments or a “cure”, but some people need support to help them with certain things. Autism is also referred to as Autism Spectrum Disorder (ASD), Autism Spectrum Condition (ASC) or Aspergers (used to describe people with above average intelligence). Autistic people often have other conditions, like Attention Deficit Hyperactivity Disorder (ADHD), anxiety or depression or epilepsy.
3.2 Think Autism, the National Adults Autism Strategy defines autism as a lifelong neurodevelopmental condition that affects how a person communicates with and relates to other people. Autism also affects how a person makes sense of the world around them. Autism is often described as a ‘spectrum disorder’ because the condition affects individuals in many different ways and to varying degrees. Autistic people have difficulty to a greater or lesser extent with four main areas. The Autism Education Trust highlights the importance for staff in schools and educational settings to understand and pay attention to this as most pupils with autism will have individual educational needs and a range of abilities across these areas:
- Social communication: for example, problems using and understanding verbal and non-verbal language, such as gestures, facial expressions and tone of voice.
- Social interaction: for example, problems in recognising and understanding other people’s feelings and managing their own feelings.
- Social imagination: for example, problems with predicting other people’s intentions and behaviour and imagining situations outside their own routine.
- Sensory differences: Many autistic people experience some form of sensory oversensitivity (hypersensitivity) or undersensitivity (hyposensitivity) for example to sounds, touch, tastes, smells, light or colours.
3.3 It is important to recognise there are positive aspects of autism, which underlines the importance of a strengths-based approach to this strategy. This includes attention to detail; an ability to focus deeply and avoid distractions; keen observation skills; an ability to absorb and retain facts, linked to high levels of expertise in particular topic areas; unique thought processes and creativity leading to innovative solutions; tenacity and resilience; and integrity and honesty.
3.4 Individuals with autism often prefer to have a fixed routine and can find change incredibly difficult to cope with. People who struggle to deal with change or an overload of information are likely to become stressed or anxious, and possibly feel physical pain. This can result in some people behaving in ways which are
4.1 Throughout this strategy, we will use the word autism and identity-first terminology (“autistic people” rather than “people with autism”) when referring to autistic people - children, young people and adults. This reflects research published in the Autism journal in 2015 (The National Autistic Society, the Royal College of GPs and the UCL Institute of Education) which looked at the preferences of UK autistic community members – autistic people, their families, friends and professionals around the language used to describe autism. Unless otherwise stated, reference to ‘autistic people’ or ‘an autistic person’ includes children, young people and adults of all ages across the autism spectrum at all levels of intellectual ability.
4.2 We recognise that some people prefer other terms and all workers should wherever possible find out the term(s) preferred by the person(s) they are working with and respect this.
5.1 Coventry and Warwickshire have adopted the vision within the national strategy Think Autism (2014) as follows:
“Autistic people and their families are able to live fulfilling and rewarding lives within a society that accepts and understands them. They can get a diagnosis and access support if they need it, and they can depend on mainstream public services to treat them fairly as individuals, helping them make the most of their talents.”
6.1 The purpose of this strategy is to provide a clear plan for support across Coventry and Warwickshire and identify priorities and objectives which reflect local need. The strategy aims to ensure autistic people and their families and carers in Coventry and Warwickshire have access to the support and information they need to enable them to Achieve their full potential in education;
- Maintain, develop and enhance meaningful connections with family, partners and spouses and others that support their health and wellbeing, including carrying out their caring responsibilities;
- Be employed in jobs, undertake volunteering roles and supported internships that maximise their strengths and feel meaningful and important to them;
- Feel safe and able to belong and contribute to their local community in a way that works for them;
- Have a comfortable home and live in a way that maximises their autonomy and independence;
- Enjoy the benefits of good health (especially mental health) and wellbeing;
- Be well informed about ways to help themselves, navigate support and access help when they need it;
7. Key Strategy Principles
7.1 This joint Strategy is aimed at reducing inequalities experienced by autistic people by delivering a range of activities which improve their overall health and wellbeing outcomes. Based on the evidence base gained through the coproduction activity, JSNA, service reviews and evidence of what works in other parts of the country, a number of key principles underpin the strategy.
7.2 The process of improvement is not within the gift of any one organisation, and requires joint ownership, commitment and leadership. All partners supporting this strategy are committed to reducing the gap between the support needed and the support currently available. This strategy outlines the areas of focus to make this happen.
7.3 Delivery of the strategy will continue to be driven through co-production with autistic people and their families to ensure solutions are accessible and meet needs. In the absence of national robust evidence detailing effective interventions and support for autistic people, there is commitment to testing approaches based on best practice and learning from experts by experience and professional experts. Partners will work together to develop our understanding about what works for autistic people and their families.
7.4 There is currently no specific budget for coordinated autism services and support. The strategy must therefore be delivered in a way that ensures existing resources are used in the most cost-effective way, including promoting prevention and early intervention and making all existing services and pathways of support more accessible and effective for autistic people.
7.5 Many people with autism can work and have shared that they want to work. It is therefore imperative to find out what people’s aspirations are and agree how we can help them achieve these, building on their existing skills and experience. Enabling more people with autism to access education and meaningful paid employment will contribute to their mental and social wellbeing, increasing confidence, self-esteem and friendship networks, as well as financial wellbeing
7.6 Parents and carers of autistic people will be recognised as expert partners in care and supported to deliver their caring responsibilities, acknowledging the importance of preventing carer breakdown and reducing the need for further services.
7.7 People will be enabled to develop their own solutions and networks of support through developing a better understanding of the third sector services people are using to effectively develop their own support networks and facilitate information sharing.
7.8 Mainstream and specialist services will be commissioned and delivered in a way which does not restrict access nor exclude people on the basis of an autism diagnosis. It is the responsibility of all services to ensure accessibility and appropriate support for autistic people within their service, acknowledging that this may require training and development for the workforce.
7.9 Closer partnership working between services involved in supporting autistic people and their parents and carers, such as Health Visiting service, School Nursing, Early Help support teams, education providers, diagnostic services, mental health support and community providers will be crucial to an improved experience for people with autism.
7.10 The wellbeing of autistic people depends on feeling accepted and understood in all aspects of their lives and the strategy includes a commitment to develop autism friendly local communities and services. The strategy aims to enable autistic people to access housing, employment, education and benefit from being involved in cultural, sport and leisure opportunities in an equal measure.
7.11 Equal opportunities and access to support that responds to the needs of autistic people from Black, Asian or minority ethnic backgrounds, as well as communities described as ‘seldom heard’ LGBTQ+ communities, recognising that some studies suggest a higher percentage of autistic people identify as lesbian, gay, bisexual transgender or queer.
7.12 The impact of Covid-19 on people’s ability to access care and support illustrated the need to commission differently, with a re-focus of provision, including digitalisation of practices and setting up new ways of working across all sectors. Robust infection prevention measures and social distancing rules mean that face to face contact can become restricted, and this Strategy will consider alternative but accessible ways of support.