All Age Autism Strategy 2021 to 2026 (HTML version)

Introduction

This strategy has been brought together by autistic children, young people, adults and family carers together with professionals from across Surrey's service system, to make our joint ambitions clear.

We want to achieve an autism friendly approach across the County in education, health, social care, work and communities. We want services to have a more joined-up, proactive, timely and autism-accessible offer so that autistic people have equality of access.

The Strategy will promote a cultural shift so that community and service settings are understanding and welcoming for autistic children, young people and adults.

The Strategy uses the term autistic people to refer to children, young people and adults on the autism spectrum. We have agreed to use identify-first language (e.g. "autistic person" rather than "person with autism") as this was the preference of most autistic people we spoke to.

The All-Age Autism Strategy presents our ambition, an overview of the workstreams we are putting in place to deliver the change that is needed, and our strategic priorities for Year 1 (September 2021 / August 2022)

Our vision

Our vision is for Surrey to be a place that offers opportunities for people to live healthy and fulfilling lives, where people's contributions to their local communities are welcomed, supported and valued, and no-one is left behind. These opportunities should extend to all autistic children, young people and adults in Surrey. All organisations involved in developing and implementing this strategy are committed to ensuring that the vision and aims will be delivered in full for autistic people.

The development of the strategy has been centred around involvement of autistic people and family carers. The implementation of the strategy will continue this, with a commitment to ongoing involvement and engagement with Surrey's community of autistic people and family carers

National Strategies

National strategy for autistic children, young people and adults 2021 to 2026

The Government has published a National Strategy in 2021 which replaced the previous Think Autism strategy for Adults. The strategy focuses on the following aims:

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 system

Our All Age Autism priorities in Surrey are well aligned with the Government's vision. The national strategy will help to raise awareness of the needs of children, young people and adults with autism and support the aims of Surrey County Council's strategy.

The All Age Autism strategy is grouped into the following workstreams based on the key areas identified in our public consultation:

Information, Awareness and Understanding of Autism
Education and Preparation for Adulthood
Health and Social Care
Employment
Housing and Independent Living

The members of these workstreams will continue to adapt and deliver change within the 5 year length of the strategy through co-production with autistic people, their families, and other experts.

National Disability Strategy

The government released a National Disability Strategy that aims to improve the everyday experiences of disabled children, young people, adults and family carers in these areas: while at home, while commuting, at work or in education, when shopping or getting about, when accessing public services online and in feeling connected to others.

Surrey County Council feels passionate about raising awareness of all disabilities so that no one is left behind. We will endeavour to make changes so that all people in Surrey can live fulfilling lives and this strategy makes a significant contribution to delivering this objective

Context

What is Autism?

Autism is a lifelong developmental disability which affects how people communicate and interact with the world. There are several names used to describe the autism spectrum, including Autistic Spectrum Disorder, Autism Spectrum Condition, and others which have been used to describe a part of the spectrum, such as Asperger Syndrome or Classic Autism. In this strategy we use the term 'autism' to refer to the whole autism spectrum and the strategy recognises that autism is one of a wider range of neurodiverse conditions.

The diagnostic criteria for autism include social communication and interaction challenges, and repetitive and restrictive patterns of behaviour or interests. However, the way that autistic people experience their environment can lead to areas of strength or difficulty that vary between individuals and may not be immediately obvious.

For example, autistic children, young people and adults can have:

Strong attention to detail
Above average technical or creative skills.
Character strengths, such as honesty and loyalty
Differences in sensory processing, including over- and under-sensitivity
Difficulty predicting what is going to happen next
Difficulty knowing or understanding what other people think or feel.

The autism spectrum is not linear - it is not possible to line autistic children, young people and adults up in order of being more or less autistic. Different features of autism vary from individual to individual, as well as over the lifespan. How an autistic person appears in a particular environment may not be representative of how they appear in other environments.

Babies, infants, children and adolescents all develop at different rates, and this does not always indicate a neurodevelopmental condition. This means autism can become evident in different individuals at different ages. When a child or young person has additional needs such as autism, it is important to identify this early, signpost to advice and support, and put the right interventions in place to support the child's ability to thrive. We know that not everyone who is autistic has had or would like a diagnostic assessment. Our aim is that changes promoted by this strategy will benefit autistic and other neurodivergent children, young people and adults whether or not they have a diagnosis

Co-occuring conditions

The National Institute for Health and Care Excellence (NICE) estimates that around 70% of autistic people have an additional condition, which is "often unrecognised". The main conditions that co-occur more frequently in autistic people compared with the general population include:

Mental health conditions

Research suggests that 70% of autistic people have a mental health condition, and that 40% have two or more. Autistic people are up to four times more likely to have anxiety disorder, and twice as likely to have depression. Research has shown that autistic people are more vulnerable to negative life experiences, which may also impact mental health. Compared to the general population, autistic people report having a lower quality of life. Research indicates that suicide is a major cause of early mortality in autistic people

Neurodevelopmental conditions

These are caused by differences in early brain development, and affect the way that a person processes information, thinks, or learns. Autism is one such condition, and it is common for autistic people to have other neurodevelopmental conditions. These include general learning disabilities (affecting between 15% and 30% of autistic people), specific learning difficulties (such as dyslexia and attention-deficit hyper-activity disorder), and other conditions such as epilepsy. Delays in language development are common in autism, and up to 30% of autistic people are non-speaking (completely, temporarily, or in certain contexts).

Autism affects people of all ages, ethnicities and genders. Inequalities experienced because of disability may interact with discrimination and barriers based on ethnicity, beliefs, sex, gender, sexual orientation, age, pregnancy and maternity, marital status and socio-economic disadvantage. We have completed an Equalities Impact Assessment that sits alongside this Strategy and summarises how we aim to address these issues.

Our Autistic Community

Surrey's population in 2021 is projected to be 1.23 million so, our best approximation of our autistic population is 12,300 people, made up of:

3,200 children aged 17 and under
900 young people aged 18-24
8,200 people aged 25 and over

Currently autism is thought to be three times more common in males than females. This ratio may change as understanding of the way autism presents in women and girls improves. Research has suggested that autism may be under-diagnosed in females, gender-fluid and non-binary people (UK Parliament Postnote #612, January 2020).

The total number of Education, Health and Care Plans (EHCPs) for young people up to the age of 25 in 2020 was 10,762. 3,653 or 34% of these had a primary need of autism as follows:

Male – 2,958
Female – 695

National data shows the number of autistic people aged 18 and over in Surrey in 2021 is about 9,100. In 2021, 20% of these people (1,834 people) are in receipt of a service from Adult Social Care (ASC), and a fifth of these are women.

Why we need a strategy

Autistic children, young people, adults and family carers have told us that there are significant barriers to achieving our vision across the service system and the wider community.

Addressing these barriers will require better understanding of autism, and culture change across Surrey's services and community.

These are not quick things to deliver, but we know that with focussed leadership across the system over time, autistic children, young people and adults in Surrey can be supported to achieve better outcomes.

The work of the strategy will need to be embedded in organisations and the wider community so that it is sustained and can be built on.

We want to identify autistic people's needs earlier and improve their physical and mental health. This will help better understanding of the inequalities autistic people face, such as the causes for the gap in life expectancy, so we can take the right actions to improve people's health outcomes.

We are committed to bringing the right people together to break down barriers to community access and use our resources effectively to deliver the support that people need. Our strategy is here to focus the action of all the partners across Surrey who will work together to make the changes we need to see.

Outcomes of our consultation

We carried out a public consultation in 2020. Autistic children, young people, adults, families, carers and professionals developed a set of questions to ask people about their experiences and how things could be improved in Surrey.

We received 1,165 detailed responses:

109 autistic people
756 family members, carers or partners of autistic people
237 professionals
and 63 'others'

We have worked with London South Bank University to analyse the responses and draw together the key themes. We have checked the themes with autistic young people and adults, families, carers and professionals through a series of online workshops.

Priorities identified by autistic people in order of most mentioned to least:

understanding autism
diagnosis
more support
training
employment
mental health
education
please for autistic people to meet
autism in women and girls
information and advice
addressing isolation

Priorities identified by family members and parent/carers of autistic people in order of most mentioned to least:

availability of services
diagnosis
training
education
joining up of services
EHCPs
funding
information and advice
understanding autism
transitions

Priorities identified by people whose job involves supporting autistic peoplein order of most mentioned to least:

availability of services
diagnosis
understanding autism
joined up services
education
funding
transitions
EHCPs
information and advice

Our principles

My voice

Work on developing and implementing the strategy will involve autistic people and family carers. Nothing About Us Without Us - We make fair and strong decisions together.

Partnership working

Many different agencies and organisations will be involved in delivering this strategy. We will work together towards the common goals outlined here.

Strengths-based approach

We intend to build on strengths of individuals, organisations and communities.

Closer to home

We aim for autistic children, young people and adults to be included and supported in their local communities as far as possible. When people require specialist support that cannot be delivered in every locality, we aim for support to be in-County wherever possible.

Efficient use of resources

We know that services have limited resources, and this strategy is ambitious in aiming for widespread change, but does not come with extra funding.

However, to ensure the change can be as wide as possible we will work to use the resources available in the most effective way. Where available we will bid for funding that may become available through the national autism strategy, or other routes. Making the system more joined-up, inclusive and accessible will prevent crises for autistic children, young people and adults and their families and improve efficiency across the service system.

Our plan

The strategy sets out priorities based on the outcomes of a wider consultation in 2020. The priority themes have been structured into five workstreams as follows:

Information, awareness and understanding of autism
Education and preparation for adulthood
Health and social care support
Housing and independent living
Employment

All these priorities rely on the involvement of lived-experience voices at every stage. Each workstream has had an autistic person and/or a parent co-leading the work, with people with lived experience and partners across the service system shaping the proposed actions and recommendations for the 5-year delivery of the strategy.

To ensure that our principle of centering the voice of lived-experience is achieved, in year 1 we will:

Establish a Children's Autism Partnership Board to support involvement of autistic children and young people.
Develop a Reference Group of autistic young people / family carers to support development and implementation of the strategy
Maintain and build on autistic people and family carers' involvement in the Adults' Autism Partnership Board.
Develop the Reference Group of autistic adults to support development and implementation of the strategy.
Ensure involvement of experts by experience in each of the strategy workstreams

The work carried out to implement the plan will report back through the Children's and Adults' Autism Partnership Boards and the decision-making bodies for Surrey County Council and the NHS (National Health Service) in Surrey.

Our plan includes four underpinning pieces of work:

1. Quality Assurance

All workstreams will evaluate their work to demonstrate the quality of what they deliver.

2. Digital and Data

We need better data about autistic people in Surrey to inform service planning. We know that not all services currently collect good data about autism. Workstreams will seek to improve autism data collection, and to find ways to share data effectively while maintaining good information governance.

3. Pathways and linking of services

Autistic people have told us that they experience "falling through the gaps" between services. All workstreams will seek to address this disjointedness by partnership working, building links between services, understanding where gaps cause problems for autistic people, and working to make people's experience more joined up.

4. Finance and Funding Implications

Improving access for autistic people is the right thing to do and is also likely to be more cost effective for services and the support system. This strategy does not come with extra funding but is ambitious in making change across the system. All workstreams will seek to use the limited resources available in the most effective way. This may include bidding for external funding or making business cases to deliver services more efficiently

Workstream 1: Information, Awareness and Understanding of Autism

What we want to achieve:

Autistic children, young people and adults are supported to understand what their autism means for them, their strengths and skills and so that they can live fulfilling lives
Autistic people are understood, welcomed and can access community services, for example transport, leisure facilities, shops, youth clubs and community events.
To improve public understanding and acceptance of autism, and that autistic people feel more included in their communities and less lonely and/or isolated
Tackling stigma attached to autism in the community
Autistic people and family carers can live a fulfilling life in the community
Facilities available in the community make reasonable adjustments to be autism accessible. This means that there are services and supports available to autistic people whether or not they are eligible for statutory services
Information about where to find advice, signposting and support across education, health, care and the community is easily accessible to all.
Autistic people and family carers are able to find information and support which helps them to live an active life
Family carers will be able to access training at the right time, to enhance their understanding of how autism affects their family member and explore practical ways to support them
Specialist and mainstream services across the system, from Health, Social Care, Education, Housing, Leisure, Police, Criminal Justice and others are inclusive, accessible and helpful for autistic people and family carers

How will we do this - year 1 plans:

Develop options and approaches for an autism training offer across services and the community.

Engage with stakeholders to identify the need for training and understand the audience size and priority groups for training.
Co-design training with people who have lived experience and carers
Begin implementation of this training for priority groups
Monitor autism training delivered to priority groups

Develop and deliver autism training offer for autistic people and family carers

all training will be designed and where possible developed with autistic people

Work to promote "Autism-Friendly Communities"

Identify an appropriate location to pilot development of an Autism Friendly Community
Engage with community facilities, universal services and voluntary sector organisations to support reasonable adjustments
Start work on developing and evaluating this to inform adoption of approaches that work in other areas across the County

Review and revise current information and advice content held across agencies

Engage with autistic residents to understand the need for information in suitable formats.
Develop online and paper-based information that is accessible, reliable and designed in a way that is inclusive for autistic people

Workstream 2: Education and preparation for Adulthood

What we want to achieve:

Inclusive educational provision which enables children and young people to be taught within their local community.
All education settings will receive autism training
Autistic children and their family carers will know what they should expect from their education settings
More children will be able to go to school closer to their home
Children and young people will feel supported at school with a focus on anti-bullying policies
Autistic children have their additional and special educational needs met at the earliest time.
All education settings will be supported by their multi-agency Team around the School
All partners will understand the different pathways available to support early intervention
All partners will understand when a child might require an education health and care needs assessment
The child's voice, hopes and aspirations will influence all planning and decisions made about them
Family carers will be actively involved in all matters concerning their child and plans will be co-produced.
Children will be heard, listened to and supported to achieve their identified outcomes
Family carers will report increasing participation in, and satisfaction with planning processes and outcomes for their children
Autistic children young people and adults have good mental health and wellbeing, and access to universal or specialist Mental Health services as required
Deliver a dynamic programme of autism training to upskill the workforce.
Reasonable adjustments in universal Mental Health services
Review mental health pathways
In-patient accessibility
Autistic children and young people go on to live rich and fulfilling lives in their own communities
Pathway choices for young people will be outcome focused and appropriate for their level of need
There will be more choice for support focused on developing independence and life skills
Plans will be put in place in good time for young people in residential and education settings out of county that will return to Surrey as adults
We want education settings to provide better and more inclusive support to autistic children and young people.
We want transitions into adulthood to improve for autistic people

How will we do this - year 1 plans:

Co-design and roll out the delivery of a robust training programme for all education settings starting with schools.
Co-produce guidance explaining what support and adjustments should be made for autistic children to support early intervention and inclusion in education settings.
Commission a range of local provision so that children can go to school within their local community
Ensure that services work together, in partnership with family carers and the young person; providing early and additional support when needed.
Mapping activity to identify any gaps in provision ✓ Provide clear information and guidance on the Local Offer
Provide guidance and training for SENCOs
Co-design, implement, evaluate and roll out a new neurodevelopmental assessment and intervention pathway
Co-produce guidance for children, family carers and SENCOs to support participation
Ensure co-production is embedded in the SEND teams development programme
Establish a quality assurance framework and audit cycle to drive continuous improvement
Establish clear ways of working and protocols across health, social care and education to support effective planning
Strengthen collaborative commissioning arrangements to ensure children and young people are supported at the right level across education, social care and health
Pilot new ways of working in social care for the Children with Disabilities and Transition Team to plan with young people and their family carers at a much earlier age
Develop new mental health pathways across health, social care and education to ensure young people with a mental health need experience a smooth transition to adulthood

Workstream 3: Health and Social Care Support

Assessment and diagnosis

What we want to achieve:

To engage everyone involved to improve health and wellbeing for autistic children and adults
Families and autistic children, young people and adults will know how to access support, have an assessment of their needs, and be able to live a fulfilling life
To have robust and personalised neurodevelopmental assessment pathways for children, young people and adults
Diagnosis will happen at the time appropriate for the individual
Reduced waiting times and improved pre and post diagnostic support
Support for autistic children, young people and adults, whether they have a diagnosis or not

How we will do this - year 1 plans:

Submit bid for NHS England funding for Children's and Adults' services.
Develop a business case for investment to improve pre- and post- diagnostic support
Assessing needs earlier to signpost people to the right support
Peer support
Develop an Autism Navigator role
Peer Expert Network
Waiting times for assessment will be reduced and pre- and post- diagnostic support for children, young people, adults and their families will be available.
Mapping, Gap analysis and benchmarking

Forensic support: including police, prisons and criminal justice

What we want to achieve:

Surrey Police recognise the needs of autistic people and make reasonable adjustments.
The criminal justice system, including the courts and court liaison, and prisons recognise the needs of autistic people whether they are victims, witnesses, suspects or perpetrators of crime, and make reasonable adjustments.
When autistic people are at risk of being affected by criminal activity, they can get support from services that understand their autism (e.g Advocacy Services, Youth Offenders Service, Forensic Services).
Understanding of autism and reasonable adjustments throughout Surrey Police
Understanding of autism and reasonable adjustments in Advocacy Services, Youth Offending Services, Courts, Court Liaison, Probation and the criminal justice system

How we will do this - year 1 plans:

Build on the current Pegasus scheme and Police autism training to ensure autism accessibility and extend current good practice.
Mapping of services in the forensic system; of autistic children, young people and adults supported by services in the system
Work with prisons and youth offending services to develop and agree a best practice document reflecting planning leading up to release, improving multi-agency information sharing / what a good support package looks like

Market Management

What we want to achieve:

A suitable range of autism accessible health and social care support in Surrey that children, young people and adults can use. This includes:

Support when autistic people struggle with their mental health
Support for older autistic people
Low-level support for people to live in the community and avoid escalating levels of needs
Specialist support when things go wrong, to avoid unnecessary hospital admissions and facilitate timely discharge