Wiltshire Autism Strategy 2022 to 2027
Local and national context
What is autism
Autism is a spectrum condition1 which affects different people in different ways. Autistic people2 may experience difficulties with social communication and interaction, repetitive and restrictive behaviour, sensitivity to light, sound, taste or touch, highly focused interests or hobbies, and anxiety and depression.
The definition of autism continues to change as more is learned. Neurodiversity is a movement that challenges perceptions of autism. It rejects the idea that autism is a disorder and sees it instead as a neurological difference: one with a unique way of thinking and experiencing the world. The movement celebrates neurological diversity and champions the different world views and skills that people have.
Research shows that public understanding of autism has improved in recent years and that as a society we are becoming more open to neuro-divergence and different ways of being. However, the All-Party Parliamentary Group on Autism's 2019 report found that just 24% of autistic adults and 26% of family members think public understanding has improved since the introduction of the Autism Act in 20093.
This lack of understanding and acceptance can make it difficult for autistic people to live in a neuro-typical world. Statistics show that autistic people are more vulnerable to anxiety and depression, particularly in late adolescence and early adult life. Autism can also limit an individual's ability to work or find employment - often because society does not understand the experience of the autistic person. Data published by the Office for National Statistics for the first time in February 2021 shows that as of December 2020, 22% of autistic people aged 16 to 64 are in employment, in contrast to 52% of disabled people, 81% of non-disabled people4 and 5.1% of adults with a learning disability. The same report also found that 31% of employers surveyed said autistic employees would require too much support, and many reported needing more advice on how to support people.
There is some evidence to show a link between gender dysphoria (when a person's assigned sex is different from the gender they identify with) and autism. The reasons for this are not clear, and more research is needed on this subject, as well as how best to support autistic people with gender dysphoria. Anecdotally, we know that there are some young autistic people in Wiltshire who feel unease or distress because of a mismatch between their biological sex and their gender identity.
Local profile
Bath & North East Somerset, Swindon and Wiltshire (BSW) Partnership is an integrated care system (ICS) made up of NHS, local authority and voluntary sector organisations working together. Its objective is to improve the health and wellbeing of local people, tackle inequalities and achieve better outcomes and access for everyone, ensure that health and care services are high-quality and to make the most efficient use of finite resources.
Within the Partnership, Wiltshire integrated care alliance (ICA) has focused on supporting people to go home from hospital more easily, helping people with long term conditions get the care they need, and providing support for our ageing population and those with complex needs. Wiltshire ICA is moving away from a sole focus on service improvement and integration to improving the health and wellbeing of our population and working collaboratively with the interests of the Wiltshire population at the heart of all decisions. This autism strategy reflects these priorities.
Special educational needs and disabilities (SEND)
Autistic children, young people and their families in Wiltshire have shared their experiences and their vision and priorities for the future. Wiltshire has done well in working towards the goals within the Children & Families Act 2014, in 2018 we received a positive SEND local area inspection. This was an inspection of how we all work together, including education settings, the Council, WPC, the voluntary sector, and health5. Alongside a number of strengths, inspectors did identify some areas for improvement around children and young people with autism.
Areas for improvement around children and young people with autism
Identifying needs:
- parents and carers sometimes reported that when they raise concerns, they felt the local area does not always listen
- autism-related needs of children and young people were not always identified quickly enough
- lack of specialist placements may sometimes result in breakdown in school placement
Meeting needs:
- there were gaps in autism spectrum condition provision, especially across education and health services
- there was a lack of NICE-compliant autistic spectrum condition pathway
- some children had to travel significant distances to the appropriate specialist setting
- parents told inspectors of their anxiety while waiting for a formal diagnosis
Improving outcomes:
- there was a lack of specialist autism education provision in the local area. Strategic plans are currently being finalised to provide resource bases and specialist provision for ASD pupils in the south of the county
There has been significant work carried out since 2019 to improve support for children and young people with autism and their families, and this is described in Wiltshire's self-evaluation framework (SEF). This includes developing and enhancing NICE-compliant diagnostic pathways, seeking to reduce waiting times, commissioning post-diagnostic support, and significant engagement and co-production with parents.
Children, young people and their families tell us they want to remain living with their families, avoiding where possible the need for residential care both now and as they move into adulthood. Children and young people (especially those with special educational needs and disabilities) also tell us that they want to live independently, take risks and try new things - but sometimes feel held back by the worries and anxieties of their parents, or because they cannot access the right support.
Wiltshire System of Excellence
In response, Wiltshire is establishing itself as a System of Excellence for SEND. The vision for the System of Excellence is for Wiltshire to be a place where we are working together to empower children, young people and families to thrive in inclusive communities.
The programme brings together seven key strands of work:
- better outcomes for children and young people, supporting moves towards independence
- a vision for the whole-age pathway from 0 to 25 with good transitions, including health and social care input
- early help which is not driven by an EHCP or diagnosis
- easier pathways for families, with simpler processes and better information
- upskilled, confident mainstream settings and schools equipped with resources to support CYP effectively, leading to parent/carer confidence
- an equitable and consistent offer across Wiltshire
- partnership working across Wiltshire, including with parents and carers
Adults in Wiltshire say they want to live safely and independently in their own homes for as long as they can and enjoy the best possible quality of life. Our approach is based on people's strengths and focuses on what people can contribute. This includes supporting people to be ambitious and discover their potential.
Our vision is therefore for autistic people in Wiltshire to be able to live fulfilling and rewarding lives within a society that accepts and understands them. This means people can get a diagnosis and access support if they need it; can depend on mainstream public services to treat them fairly as individuals and help them make the most of their talents in an accessible physical environment; and can expect to play an equal part in the local community, get the right support at the right time throughout their lives and develop their skills and independence and work to the best of their abilities.
National strategy
This echoes the vision and objectives of the National Autism Strategy, published in 2021, which prioritises:
- improving understanding and acceptance of autism within society
- improving autistic children and young people's access to education, and supporting positive transitions into adulthood
- supporting more autistic people into employment
- tackling health and care inequalities for autistic people
- building the right support in the community and supporting people in inpatient care
- improving support within the criminal and youth justice systems
This plan is also informed by the NICE6 autism quality standard (QS51), and clinical guidelines: Guidance on Autism in under 19s (CG128 and CG170) and Autism in Adults (CG142). The national Learning disabilities and autism (LDA) programme aims to make health and care services better so that more people with a learning disability, autism or both can live in the community, with the right support, and close to home. The 2015 report Building the right support7 sets out how we will ensure that people get the right care, in the right place at the right time. Wiltshire is part of the Bath & North East Somerset, Swindon and Wiltshire (BSW) LDA programme, which has published a roadmap to improve outcomes for people with a learning disability, autism or both. Progress on delivering the roadmap is subject to rigorous reporting to and scrutiny by NHS England.
1 This strategy generally uses the term autism spectrum conditions (ASC) in preference to autism spectrum disorders, as research shows this is generally how autistic people prefer the condition to be described. However, the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) describes it as autism spectrum disorder, so this term is used when referring to the diagnosis.
2 This strategy uses the term "autistic people" over "people with autism," as research by the National Autistic Society nationally and by Wiltshire Parent Carer Council locally found this was generally the preferred description.
4 Outcomes for disabled people in the UK: 2020, Employment (www.ons.gov.uk) (opens new window)
6 National Institute for Health and Care Excellence
7 National plan – Building the right support, PDF 2MB (england.nhs.uk) (opens new window)