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Wiltshire Autism Strategy 2022 to 2027

Our priorities

The six areas we will prioritise in this strategy are drawn first and foremost from what autistic people in Wiltshire have said is important to them. These priorities also align with the roadmap across BSW and the national autism strategy, which was published in 2021. This section describes those priorities and the things we will do to achieve the vision set out at the beginning of the strategy.

Across BSW, we have had to revise our NHS-funded investment proposals in 2021/22 to align with available funding from NHS England. In 2021/22, the following investment is being made to improve health outcomes for people with learning disabilities and/or autism spectrum conditions:

  • £194,000 to transform the diagnostic pathway for children and young people
  • £84,000 to level up the Swindon adult autism diagnosis services
  • £70,000 into infrastructure and enablers for the delivery of the BSW LDA strategy
  • £47,250 to develop community forensic assessment and treatment services
  • £45,000 to create autism-friendly health and social care environments

Improve the health of autistic people and reduce health inequalities

NICE guidance states that nobody should wait more than 13 weeks between referrals and initial assessment. Diagnostic services are seeing increasing demand for assessments, and this is believed to be for various reasons: better public awareness of autism, a build-up of people on the waiting list during the pandemic, pathways which do not differentiate between different levels of need and different types of presentation.

There is also an understanding amongst some parents that a diagnosis of autism spectrum disorder (like an Education, Health and Care Plan) will enable them to access support. This creates a perverse incentive for parents to get a diagnosis and we need to move away from support which is diagnosis-led to that which is needs-led.

One of the central planks of the BSW LDA roadmap is to transform diagnostic pathways for children and young people. Waiting times and lists for children and young people vary across BSW; this is a national problem, and in Wiltshire at the beginning of 2021/22 there were nearly 1,700 children and young people waiting for a diagnosis. However, in Wiltshire all parents will have contact with the diagnostic team early in the process. This initial contact will consist of a robust triage, initial interview, and formulation to determine the appropriate diagnostic pathway, depending on complexity.

The autism Waiting List Initiative (WLI) is a collaboration across autism assessment services in BSW. The aims of the initiative were to provide additional assessment capacity to reduce the numbers of CYP waiting, to enhance joined-up working, increase efficiency by ensuring each child or young people is on the most appropriate pathway for their needs, and to increase accessibility for children, young people and parents. This has involved creating a differentiated assessment pathway to increase efficiency (meaning that young people undergo the minimum required assessment elements for a comprehensive autism assessment); using digital methods of assessment initiated during the pandemic to increase efficiency in service delivery; and creating a truly multi-disciplinary team of professionals with different expertise and experience of local service.

During Wave 1 of the WLI, families of children and young people who had been waiting for longest were invited to opt into the new initiative. Of those who accepted the invitation in Wiltshire, the gender ratio was around 60% male / 40% female, the average age at referral was approximately eight-and-a-half years old (with a range between three-and-a-half and 14-and-a-half), and about two thirds received a diagnosis of autism spectrum conditions (with the remaining third either being signposted to alternative diagnostic pathways or having an inconclusive diagnosis).

These new ways of working have been evaluated to develop a sustainable neurodevelopmental assessment pathway which is consistent with NICE guidance. A single point of access for referrals is being scoped and will be launched in the next 18 months. This neurodevelopmental transformation programme also includes the development of an ADHD pathway, improving support for parents both pre- and post-diagnosis, and working with referrers (particularly schools and GPs) to improve the quality of referrals. The objective is to roll out best practice and ensure an equitable offer across BSW. There is also a programme of work across BSW to address waiting times for adults on the diagnostic pathway.

Leaders in education settings also report that education staff need better support to be able to identify possible indicators of autism early, so the child can get a timely assessment, diagnosis and post diagnostic support. The further development and refinement of NICE-compliant assessment pathways should be done in conjunction with early years and school providers - for example, through joint working between paediatricians and District Specialist Services.

Research collated by Autistica14 also shows that autistic people experience poor health outcomes in other areas, for example:

  • approximately 1 in 5 women with anorexia in eating disorder services are autistic. However, research is beginning to explore how anorexia and other eating disorders may differ autistic and non-autistic people
  • it is believed that up to 11% of people who die by suicide each year are autistic, compared to 1% of the general population. Factors known to increase risk of suicide (for example, social isolation, unemployment, trauma, abuse and other social and biological factors) are more common amongst autistic people. However, many autistic people say they struggle to access appropriate support for mental health problems or suicidal thoughts
  • 7 in 10 autistic children have a mental health condition. 4 in 10 autistic children have more than one. There is a developing body of evidence around the need to adapt therapies such as cognitive behaviour therapy and the increased effectiveness of these therapies when adaptations are made
  • almost 8 in 10 autistic adults experience a mental health problem and up to 10% of adults in inpatient mental health settings are autistic. National research by Autistica suggests that the number one research priority for autistic people, families and researchers is finding and adapting interventions to improve mental health
  • autistic people face substantial health inequalities, and the available evidence indicates that autistic people die on average 16 years earlier than the general population (there is a health inequalities sub-group of the LDA Programme which is tasked with tackling these challenges)
  • some autistic people are less likely to interpret signs of ill-health and many face barriers to accessing NHS services. Health checks can help proactively focus support towards groups facing health inequalities
  • between 15% and 40% of people with epilepsies are autistic, compared to just 1% of the general population. Epilepsies are particularly prevalent amongst autistic people with a learning disability
  • many autistic people are prescribed psychotropic medication, such as antipsychotics, for long periods, even if they haven't been diagnosed with the conditions those drugs are intended to treat. The long-term use of psychotropics is associated with a range of health problems
  • between two thirds and three quarters of adults wait longer than the recommended 12 weeks in NICE guidelines for an assessment, with one third waiting longer than 18 months. Nationally and locally, Services are often not commissioned or funded to support people after diagnosis
  • women and girls tend to be diagnosed later and are less likely to receive a diagnosis than men and boys with similar levels of autistic traits

We need to improve the quality of community support - including housing, social care and mental healthcare - so that autistic people are supported earlier and prevented from reaching a crisis. For the small number of autistic people who do need inpatient care, that care should be high quality, therapeutic and tailored to their needs, and as close to home as possible.

We will take action to improve the accessibility of mental health services for autistic people, via the BSW Community Mental Health Service Framework. We have funding in 2022 and 2023 to audit psychiatric inpatient settings, to ensure they are autism friendly. We will use this funding to train experts by experience to undertake onsite audits, report back to the provider of the ward, and recommend adjustments to make the physical and sensory environment more conducive to recovery. We will also share this learning with other organisations, for example, providers of supported living, GP practices etc.

We will also work with our children, adolescent and adult mental health service providers to make sure that autistic people can access support which is tailored to their needs. We will promote access to talking therapies and evaluate how accessible these services are for autistic people.

The inequalities and poorer health outcomes experienced by autistic people will be reduced by raising professional awareness of autism. For example, research shows that some of the barriers faced by autistic people are because differences in identifying one's own emotions and responding to pain are not always understood and recognised by professionals, which can lead to mutual miscommunication. The Oliver McGowan Mandatory Training is undergoing national evaluation, and once this is complete it will be rolled out to all NHS and care staff to help them learn and share the best ways of working with people with a learning disability and/or autism. In Wiltshire we want all social care staff (including those employed by voluntary or private sector organisations working in the County) to benefit from this training too.

Annual health checks are also critical to identifying and meeting autistic people's health needs. Wiltshire has prioritised annual health checks for people with learning disabilities and autistic people. Clinics are offered in GP practices and community settings, and health practitioners are working with special schools to promote annual health checks for young people aged 14 to 25. Performance is monitored by the BSW LDA Programme Board, and provision will be evaluated by the University of Bristol.

For the first time in 2021, NHSE/I's Learning from Lives and Deaths - People with a Learning Disability and Autistic People programme (LeDeR) includes autistic people. This means that any person aged 4 or over, with a diagnosis of a learning disability or autism spectrum disorder, is eligible for a LeDeR review. In 2021, the BSW Partnership also published its three-year LeDeR strategy which will raise professional awareness of how to report a death, sets out a process for system learning and action, and provides clear governance and quality assurance.

Autistic people should also be given support to move from one health service to another - for example, transferring from Child and Adolescent Mental Health Services (CAMHS) to adult mental health services. Services should work with the young person to prepare them for such a move, introduce them (or support the person to introduce themselves) to their new worker, and ensure they know how to get support. All professionals should work with the young person, parents and others in the person's network to ensure they have a plan after they leave school.

Support children and young people with autism to play, learn and move into adult life

There are approximately 7,000 children in early years settings in Wiltshire15. There are 12 children's centres in Wiltshire, offering a range of play, activities and support (including sensory spaces); pathways into midwifery, health visitors, the Special Educational Needs and Disabilities (SEND) service and ASC diagnostic pathway. Parents can also access parenting programmes and advice about local childcare, up to 15 hours of term-time childcare for some two-year-olds with an EHCP, and all three and four-years-olds.

There are approximately 70,000 children and young people in Wiltshire's schools. Around half of CYP with an education, health and care plan (EHCP) are in a mainstream school, resource base or enhanced learning provision. Nationally, we know that 1.5% of school-aged children and young people are autistic but account for 2.5% of exclusions. In Wiltshire, whilst the rate of autistic students with fixed term exclusions is reducing, the overall number is increasing (this is mainly because the overall number of students with a diagnosis of autism is increasing). Three quarters of autistic students with an education, health and care plan (EHCP) or SEN support go to a mainstream school, and national research indicates that many autistic students don't feel supported but feel that having a teacher who understands autism is the most important thing in terms of their experience of school.

Early years leaders report more openness and acceptance in talking to parents about autism. Wiltshire's SWAPP courses are invaluable for providing parents with information and reflective support, which is tailored depending on the child or young person's age. A member of staff from the child or young person's setting/school is encouraged to attend whenever possible in order to develop a consistent approach around the child or young person.

However, whilst we have made significant progress as a system, further improvements are needed in the support that children and parents get, especially if they are waiting for a diagnosis. Parents should be able to access both professional and peer support, and some children in early years settings would benefit from specialist behavioural support.

We will continue to roll out awareness-raising and good practice training and will look at ways to expand this so that all education staff and leaders can benefit. Our aim is to improve staff confidence; make mainstream education inclusive; enable self-advocacy; improve attendance & engagement, reduce exclusions - and we will measure our effectiveness against these.

We want children and young people to be in the setting that best meets their needs, and for many with autism this will be a mainstream school. Inclusive schools can lead the way in celebrating difference and diversity and encouraging a more inclusive society. The SEND System of Excellence will aim to create a positive culture which all of Wiltshire's settings and schools sign up to and feel confident practising. This culture change means removing barriers to inclusion - for example, thresholds that require an autism diagnosis before a young person can access support. Physical space, both outside and indoors, needs to be designed in a way that takes account of students' differing sensory needs.

We need to develop a continuity of provision, so that education is flexible enough to adapt to a student's changing needs, rather than expecting children and young people to fit into boxes. There also needs to be flexibility in the system to allow students to move out of specialist provision into mainstream if that is right for them. This flexibility already exists in early years settings, where children can have a dual placement between District Specialist Centre and mainstream, with flexible outreach and in-reach.

Whilst there needs to be sufficient supply of special school places to meet needs, we also need to recognise that until we have mainstream education provision that is genuinely inclusive, our need for special school places will inevitably increase. Inclusive mainstream provision is crucial in ensuring we use our specialist education provision most effectively. To this end, we aim to become an Autism Education Trust partner.

Wiltshire has recently launched its Growing up and moving on guide, which provides young people and their families with information around education, employment and training, independent living, being part of their local community, and health.

As well as transitions from education into adulthood, there is also a need to ensure that changing year groups and moving schools is personalised around the pupil. Pupils should have the opportunity to visit their new school or classroom, meet their new teacher, and teachers should be aware of any individual needs and strategies in advance. Usually, a good transition hinges on good preparation and strong communication between settings. Early years and school settings should meet regularly to review recent transitions, identify strengths and areas for improvement, and apply these lessons.

Support autistic young people and adults to access work

National research shows that unemployment rates are exceptionally high amongst autistic people, even compared to other disability groups. Autistic people also face high rates of underemployment. For those who do find work, it is disproportionately part-time, temporary, casual, or roles for which they are overqualified16. This may be partly due to ways of recruitment - for example, interview processes, tests of social ability, abstract questions - which inadvertently discriminate against autistic people. The result is that autistic people are often excluded from the workplace, and employers miss out on the skills and experience that autistic people can bring.

The national autism strategy recommends that each local area develops a Supported Employment Forum which brings together employers, job centres, education providers, local authorities, young people and families to help young people to develop the skills which will enable them to find work. Education and training must be aligned to employment gaps in Wiltshire.

Supported Employment Forums can also promote awareness-raising amongst employers and job centres and provide guidance to help create autism-friendly environments. The Autism Centre for Research on Employment (ACRE) is funded by the University of Portsmouth to provide free profiling assessments to help autistic people to find work. These tools also help job centres to signpost and provide support to autistic people who don't have a learning disability. These tools should be promoted and used across Wiltshire.

The national strategy also aims to increase the number of autistic people who can access and succeed in apprenticeships, as well as Supported Internships and Traineeships.

Support autistic people to live independently in the community wherever possible

Wiltshire has a range of community assets. These assets should be accessible and inclusive to everyone who lives, works or learns in the County. Every autistic person has a range of strengths, aspirations and abilities. We want to support these strengths and help autistic people realise their aspirations.

All services and activities in Wiltshire should be as inclusive as possible for autistic people. We want to see children and young people with autism flourishing in mainstream education, with good quality specialist provision for those with the most complex needs. We want pathways to provide young autistic people with opportunities beyond education, which enable people to transition smoothly into an adult life of independence. We want to support and challenge universal services (both public and private sector) to be autism-friendly, so that autistic people have the same opportunities as their peers.

Nationally, the number of autistic people being discharged from inpatient psychiatric settings is increasing; however, too many autistic young people and adults are being admitted to these settings because the right support is not available at the right time in the community. Wiltshire's Independent Living Strategy aims to:

  • change the way we commission accommodation and support through an increased focus on performance and outcomes, working with regional partners to develop a market of high-quality, specialist provision, and facilitating stronger partnerships between housing and social care providers. We will generally move away from commissioning residential care, towards supported living and other support which promotes independence.
  • implement recovery pathways for people with mental health conditions, including developing a "pipeline" of new supported living projects and improving crisis interventions.
  • create more housing choices for people which are designed around the physical, mental, cognitive and sensory needs of the individual.
  • ensure our pathways and processes are clear and that we improve our collection and use of data. The strategy also makes a commitment that all new packages of care will be reviewed after 12 weeks, with an expectation that many packages can be reduced as people's needs change.
  • provide the public with clear information about what is available, so that people can find the best housing, support and advice which meets their needs and aspirations.

We will also apply the recommendations within the Care Quality Commission's 2020 report 'Out of sight - who cares?' which found that too often difference (for example, neuro-divergence) is dealt with through restraint, seclusion and segregation - this is especially the case in hospital settings, but sometimes in the community too. The report recommends timely diagnosis, earlier intervention, better training (for example, around de-escalation, communication tools such as PECS and Makaton), review of psychotropic medication (which should only be used as a last resort), and a culture of openness whereby providers routinely tell commissioners/regulators about incidents of restraint and seclusion. As above, experts by experience will undertake onsite audits of ward settings, report back and recommend adjustments to make the physical and sensory environment more conducive to recovery.

In 2022, Wiltshire Council is also taking a new commissioning and procurement approach to transform how disabled young people, adults and older people (including autistic people) access daytime and evenings activities which meet their needs and aspirations in life. This includes a greater focus on goals and outcomes, the development of a service specification that is informed by the views of disabled and older people and the people who support them, and the procurement of an open framework arrangement.

These changes are likely to happen alongside changes to the Mental Health Act (1983) which will affect autistic people. The Government published its White Paper in 202117 which proposed, amongst other reforms, that autistic people should only be detained under the Act if there is a likely mental health need. This was in response to a review of the Mental Health Act which found that too many people with a learning disability and autistic people are admitted inappropriately to mental health wards and once admitted, stay in hospital too long. The White Paper also proposes putting any recommendations which arise from Care, Education and Treatment Reviews (CETRs) or Care & Treatment Reviews on a statutory footing.

Crisis pathways and services are also being mapped to determine what additional training needs there are for staff in both community and inpatient settings to enable them to better meet the needs of people with learning disabilities and autistic people who are experiencing a mental health crisis.

Raise awareness of autism and make Wiltshire an inclusive place to live, learn and work

Whilst public understanding of autism has improved in recent years, we know from listening to autistic people and their carers and allies that we still have some way to go before autistic people feel as included and accepted as non-autistic people.

Specifically, we need to encourage organisations and businesses to be autism-inclusive and/or autism-accredited. This means championing guidance to address the sensory impact of buildings and transport; using campaigns such as National Autism Awareness Week to educate and inform; and sharing best practice to encourage recognitions and behaviour change from non-autistic people.

Improve support for autistic people in the criminal justice system

The national autism strategy notes that autistic people are likely to be over-represented in criminal justice services, whether as victims, witnesses or defendants. However, their experiences are likely to be poor, due to poor understanding of autism amongst professionals and a lack of reasonable adjustments made. Prisons, police stations, Courts and other criminal justice services are often noisy, brightly lit and are likely to cause sensory distress to an autistic person.

Work is happening nationally with prison and probation staff, developing more autism-friendly environments and improving access to reasonable adjustments. NHSE/I are rolling out a new service called RECONNECT over the next 3 years, to provide care after custody for people leaving prison who have ongoing health vulnerabilities, including autistic people. The service starts working with people, including those who are autistic, before they leave prison and helps them to make the move to community-based health and care services that will provide the support that they need.

Locally, Wiltshire Police runs a scheme whereby an autistic or neurodivergent person carries an autism alert card so that police officers or other professionals or members of the community are advised that a person may have communication needs or need some extra time or help in certain situations.

One of the BSW roadmap priorities is to develop community forensic assessment and treatment services in Wiltshire and Swindon.

14 Autism Strategy recommendations, full compendium of briefings (autistica.org.uk) (opens new window)

15 Wiltshire SEND Inclusion Strategy 2020 to 2023

16 Autism Strategy recommendations, full compendium of briefings (autistica.org.uk) (opens new window)

17 Reforming the Mental Health Act (gov.uk) (opens new window)

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