Barnsley's All-Age Autism Strategy 2025- 2030

The Barnsley All-Age Autism Strategy 2025-2030 has been developed in partnership with the following: 

• Barnsley Autism Stakeholder Group
• NHS South Yorkshire Integrated Care Board
• Barnsley Council
• Southwest Yorkshire NHS Foundation Trust
• Barnsley Hospital NHS Foundation Trust
• Voluntary, Community and Social Enterprise groups including Barnardo’s
• South Yorkshire Police
• Crown Prosecution Service
• Youth and Criminal Justice Service
• Community & Voluntary Sector

We would like to thank all members of the Barnsley Autism Stakeholder Group. We could never have got to where we are without your input.

Barnsley Autism Partnership Delivery Group. Thanks for your contributions and helping to steer the development of the strategy.

Members of the Barnsley Autism Partnership Delivery Group and Stakeholder group, want Barnsley to be an Autism Friendly Town and be a place of possibilities where people feel included in their communities, are prepared for adult life, and can take advantage of all the local opportunities.

We want autistic people living and working in Barnsley to live happy, thriving lives.

This all-age strategy is based on the National Strategy for Autistic Children, Young People and Adults: 2021 – 2026 and mirrors the six national themes:

1. Improving understanding and acceptance of autism within society
2. Improving autistic children and young people’s access to education and supporting positive transition
3. Supporting more autistic people into employment
4. Tackling health and care inequalities for autistic people
5. Building the right support in the community
6. Improving support within the criminal and youth justice systems

The National Strategy replaces the previous adult autism strategy ‘Think Autism’ (April 2014) and now includes children and young people, emphasising the significance of early diagnosis and lifelong support.

This strategy has been co-produced by the Barnsley Autism Partnership Delivery Group alongside the Barnsley Autism Stakeholder group.

We will set measures of success for each of the six themes of this strategy. This will be set out in a delivery action plan.

Autism is 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.

Co-Production has been central to the development of this strategy. A stakeholder group has taken the lead throughout all stages.

The Barnsley Autism Stakeholder Group was made up of:

• young people and adults with lived experience of autism
• parents and carers with lived experience of autism 
• professionals from organisations who provide support services for autistic children, young people and adults, and their families.

The Barnsley Autism Stakeholder Group planned a comprehensive consultation and engagement programme to enable as many people as possible to share their views and experiences. This included:

• drop-in events and sessions across the borough
• a local survey - accessible on-line as well as in paper forms from community setting such as libraries.
• a 1:1 feedback form
• young person friendly worksheet

The Barnsley Autism Stakeholder Group played a vital role in shaping the inclusive approach gathering feedback from across the community to inform this Local Strategy.

A summary overview of all the engagement carried out to support the strategy development can be accessed via here.

The Barnsley All-Age Autism Strategy presents:

• an overview of the Themes
• our Commitments

There is a significant gap between the life outcomes experienced by Autistic people and the rest of the population. With the rates of autism assessment and diagnosis increasing, the gap will widen as autism rates continue to climb.

This strategy, along with a delivery plan, aims to:

• work towards a plan to reduce the current inequalities.
• ensure future services are co-produced and designed with the involvement of people who use those services.
• ensure that autistic people have improved outcomes and a better quality of life.

National Picture [1]

• There are around 700,000 adults and children with an autism diagnosis in the UK.
• More than 1:100 people have autism.
• Due to masking and late diagnosis, the current ration of autistic males to females is 3:1.
• 3 in 10 autistic people of working age are in employment.
• Whilst autism is not a learning disability, 4 in 10 autistic people do have a learning disability.
• There are over 100,000 people waiting for an autism assessment in England.

[1] National Autism Strategy 2021 -2026, National Autistic Society, Buckland review of autism employment report and recommendations

Local Picture

Children and Young People

There are currently 2751 children and young people, aged between 0 and 25 years, in Barnsley, with an Education Health Care Plan (Jan 2024). 1122 of those children and young people have a primary need of Autism.

The January 2024 School Census for school age pupils, aged between 5 and 16 years, in Barnsley maintained schools, reported 4335 Children and Young People were on Special Educational Needs Support, with 403 of these with Autism. This doesn’t include Children and Young People awaiting a diagnosis.

Adults

There are an estimated 2000 autistic adults living in Barnsley with a dual diagnosis of Learning disability and autism (based on PANSI (Projecting Adult Needs and Service Information) and POPPI (Projecting Older People Population Information). Additionally, Adult Social Care data shows that there are 125 people accessing Adult Social Care services with autism as the primary need.  There is no further information available relating to individuals with autism only or other neuro-developmental needs.

We have limited data that enables us to understand the number of Autistic people living in Barnsley.

Based on local intelligence, we believe there are more autistic people living in Barnsley than the national estimated prevalence of  1% of the population. There is a significant amount of work to be done in terms of understanding how many autistic people live in Barnsley.

We need to look at collating information from all partners to move towards having more accurate data.

At present there is no central location for gathering all data concerning the population of autistic people living in Barnsley.

The existing data predominantly focuses on school- aged children and young people with Special Educational Needs.

We can also access data regarding Autistic adults receiving social care services.

We acknowledge individuals not in contact with these services will not be included in the current data we hold. These groups include:

• Autistic adults with additional diagnoses other than Learning Disability
• Individuals on waiting lists.
• Under 5’s with a diagnosis or undiagnosed
• Autistic adults not in services
• Autistic children/ young people electively home educated.  
• Autistic people accessing further/higher education.
• Autistic adults in employment
• Autistic children and young people who do not have an Education Health Care Plan or receive Special Educational Needs and Disabilities support.

There will be an action around data sharing and inclusion within the delivery plan.

This strategy is ambitious in its vision towards a widespread change. The rate of referrals for an assessment and diagnosis has increased year on year, with no additional resources. Late diagnosis can lead to lifetime consequence impacting on their health, economic wellbeing social integration and quality of life and this can come at an additional cost to individuals and services.

The success of this strategy is based upon having a well-supported staffing resource with the capacity to support the ongoing needs and development of stakeholder group members.

Additional investment may be required to achieve the strategy’s ambitious vision, however there are limited resources, so all stakeholders will need to work creatively together to achieve the vision of this strategy.

‘People often forget that autistic children grow up into autistic adults and there is a lack of support out there. Especially girls/women who tend to mask a lot more and are perceived as ‘higher functioning’.’

‘The people who have tried to understand, even when it has been new to them, have had a huge positive impact on my life. I am now on the final year of a degree course.’

‘The activities are just not accessible for my children for various reasons, mainly sensory overwhelm. Then reasonable adjustments not being available or refusal of organisers to make reasonable adjustments because ASD isn’t a “physical” disability.’

‘Negativity and ignorance linked to lack of training, understanding and an assumption that what works for one autistic child should work for all children.’

‘Businesses, shops, restaurants, play areas etc are improving the experience by their staff having an improved understanding of autism, we have often been pleasantly surprised.’

We know from national data that although autism awareness is growing, there is still much more to be done to increase societal understanding of autism. Autistic people continue to experience some of the biggest inequities of any group in society. We recognise the need for training from health, social care and the voluntary sector to increase the understanding of autism and how it impacts on the individual, and their families and friends across all areas. Concurrently, there is a need to coordinate and expand access to autism-specific training for individuals with lived experience, parents / carers, wider family members, professionals and support providers.

Our engagement work has told us that many individuals have a basic awareness of autism. However, the lack of understanding can hinder the inclusion of autistic individuals into social and economic settings.

Lived experience shared with us highlighted challenges around intersectionality and autism. Although gender has been considered in the discussion around autism, other types of intersectionality, such as race are less well known and studied.  More work is required to understand how intersectionality affects Autistic people in Barnsley [1]

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. Autistic people may also present with varying behaviours that are neuro-diverse in nature.

We need to improve the understanding and acceptance of autism within the local community. Although there are pockets of good practice, it is important that co-ordinated work takes place with organisations and the public.

[1] Intersectionality is the combination of different identities that make up a whole individual. Just like a puzzle, each person is made up of lots of different pieces, like their race, gender, and religion. It’s impossible to understand the full picture until you put all the pieces together.

• We will improve awareness and understanding of autism - including the lived experience of children, young people, and adults - across Barnsley.
• We will continue to develop our training resources with local people, who have lived experience of Autism including those with and awaiting diagnosis, their families, and carers.
• We will make best use of opportunities to increase public understanding and acceptance of autism.

‘Being undiagnosed, I did what I was asked to do. If I was interested, I would put all my focus on it. If I wasn't interested, I did the minimum to scrape by. I found it difficult socially moving into adulthood, and always felt awkward and different.’

‘Very poor when my daughter transitioned, especially secondary to college.  Support at university was brilliant, schools could learn from this’.

‘I was bullied throughout school, my classmates believed I was ‘weird’, but I could never understand why as I always felt that I was just being myself. I struggled to make and maintain friendships so I would have meltdowns before leaving my home or on the way to school and would have to take the day off because I was so distressed it would make me physically sick.’

‘I was failed by the education system which has resulted in me getting dropped through the net, endless misdiagnosis and negative impact on mental health. I also struggle with day-to-day tasks like banking, money management and organising life. Getting overwhelmed in public places or getting overwhelmed at work.’

‘Negative experiences and transition in education is a nightmare full stop I feel my son’s school doesn't believe he has autism. He is meant to have a support plan in place, and this continues to get lost or not be followed and he is aware. Consistently having to repeat myself when it is a new teacher and explain his needs.’

We know there are an increasing number of children and young people receiving an autism diagnosis in Barnsley; some autistic children and young people face challenges in education settings and encounter difficulties around transitions, affecting their ability to achieve their full potential.

Our ambition in Barnsley is for education settings to provide better and more inclusive support to autistic children and young people particularly through each transition stage from home to pre-school, to primary, secondary school etc. We would like to strengthen our training offer to staff in these settings, working collaboratively with families with lived experience.

We need to review specialist school placements, and the alternative provision offer, to support autistic children and young people to be educated closer to home, in their communities. This will be done as part of our sufficiency planning.

In Barnsley we recognise that autistic people require additional support in managing change where there might be a disruption to activities, settings or routines. More needs to be done to ensure that there are services in place across all age groups to support transition and to ensure that there is clarity in relation to their personal progression and the support available to them.

• We will work closely with education providers at all key transition points, ensuring that children and young people’s voice and aspiration shapes decision making and planning.
• We will support all Barnsley schools and education settings to be autism friendly.
• We will continue to work with education providers to reduce the barriers to school attendance.
• We will continue to ensure opportunities for autistic children and young people to be taught within their local community through our sufficiency strategy, including special school placements as necessary.
• We will work with young people in equipping and preparing them for adulthood.

‘I had to change jobs as my boss wasn’t understanding of me having to leave to pick up my child from private nursery as he was always in trouble or hurt. My new place of work has been fantastic in helping me go to appointments and parent classes and understand as one of the director’s children have autism and ADHD.’

‘That when people take a chance on my child she shines and is able to show how capable she is.’

‘Young people are overwhelmed about where to go to for advice after leaving school/ college.  They fear acceptance and often struggle with a lack of qualifications.’

‘Meeting new people through work has been a very good independent way for me to make friends.’

‘Interviews aren't nice for anyone, but for someone with autism they are a thousand times worse. The stress caused by the thought of an interview is enough to make you want to commit suicide.  There is no employment support. When mentioned to management they laughed and said, "I think everyone is a bit autistic.’

Our engagement work has told us that there is currently a significant employment gap for autistic people in Barnsley. There are several factors contributing to this. It is not always clear to individuals what the support offer is in Barnsley. There are opportunities following Barnsley’s Pathways to Work initiative and the Government’s Get Britain Working White Paper to address these issues locally. There is also a need to look at recruitment processes not being autism-friendly and more generally the difficulty accessing the support people might need to get into work or stay in work.

Employer awareness plays a crucial role in improving the employment experience of individuals, both in enabling them to make the recruitment process more accessible or identifying the adjustments their employees might need.

We will work together to improve local employers’ awareness of the challenges faced by autistic people and how recruitment processes and ongoing support could be provided, to better support autistic people to thrive in their workplace.

• We will improve knowledge, understanding and awareness of autism across the workforce.
• We will increase training and support for employers in borough, engaging and supporting them to implement inclusive practices.
• We will work towards creating an accessible, inclusive, and welcoming public sector where Autistic people can thrive.
• We will develop and increase awareness to ensure autistic people know how to access employment services and understand the support available to obtain and maintain employment.
• We will consider alternative employment initiatives for transition from education to employment.

‘Talking to some doctors, nurses, health care assistants and other staff at my doctor’s surgery can be easy due to them knowing I have SEND.’

‘I struggle to advocate for myself or describe what I am feeling.’

‘I find communication with my GP/Nurses difficult because all of the information is given verbally, so by the time I leave the surgery I am unable to remember all of the information, and there is no opportunity to ask follow up questions once I have processed the information or if I need reminding of it.’

‘There is a long wait for a lot of services. We have had to wait for dietetic support, dental support, autism diagnosis, occupational therapy.’

Our engagement work indicated that Autistic children, young people, adults and their carers often struggle to access health, care, and support services. It is particularly difficult for Autistic people to access Mental Health Services; therefore, further work needs to be done to improve access to these services. 

It is not always possible for Autistic people and their families to make informed choice about their care and the service they access which is very often due to limited information. Currently information can be found across organisations. Better coordination across organisations would improve access to information and help individuals to have informed choice.

There is a need for more consistent efforts across health and social care systems regarding Reasonable adjustments. Reasonable adjustments are small changes that can help autistic children, young people or adults to have equal access to services and support. E.g. appointments being at a particular time of the day and consideration of the environment where the appointment will take place is considered, for example in a quiet place or a private room.  

We know that people wait too long for an autism assessment. We will work together to provide support whilst waiting and improve our pathways and the information available to people. We will prioritise the journey towards person-centred coordinated care.

There are several things in place to improve inpatient care. Inpatient Quality Transformation Programme (IPQT) which is a national initiative aimed at improving the quality and safety of care in mental health, learning disability and autism services working collaboratively together with those with lived experience, their families, clinicians and others.  

We want to provide appropriate support and services to prevent autistic people from reaching crisis point, due to mental ill health or increased anxiety, and to avoid hospital admission.

• We will review the Autism pathway to support families and autistic children, young people, and adults to know how to access support and have an assessment of their needs.
• We will ensure that our diagnostic pathway for children, young people and adults leads to accessing timely, appropriate diagnosis and support for individuals and their families.
• We will develop a range of support from pre to post diagnosis for autistic children, young people, adults, and their families.
• We will explore other models such as joint assessments, to improve the assessment and diagnosis experience of people with Autism and additional needs i.e. ADHD or Learning Disabilities.
• We will develop a clear and appropriate transition process between children’s and adult’s services. 
• We will ensure that in patient care is tailored to the individuals need and that appropriate discharge care is in place.
• We will ensure that information is available and accessible, enabling people to make informed choices about their care.

‘I am currently trying to find my way through all of the information that is out there. It is hard to know where to look for it. Again, needs to be in one place. Autism is a spectrum not every person on the spectrum will present the same, so support for one autistic person will be unlikely to be the same for another.’

‘The mixture of autism, and Mental Health problems, are not readily recognised, so holistic treatment is lacking as a result. Services need to link together to support Autistic people. 

‘More provision and fewer barriers to autistic children and young people accessing mental health support. Provision for supporting anxiety, depression, self-harm and other mental health issues instead of attributing these challenges to the diagnosis of autism and excluding these individuals from support. More specialist knowledge amongst staff in this service area to provide therapy in a personalised way to meet the needs of the autistic person.’

This is an all-age strategy that requires services to work collaboratively together in the provision of services that are integrated to improve the outcomes for autistic people.

The creation of family hubs has increased support for autistic children and young people with additional needs in Barnsley, improving their access to services and support. Additional funding has allowed services to address gaps, ensure equal access, and collaborate on early intervention and prevention.

We will work collaboratively with partners including health, social care, mental health services, housing support and community support services and where appropriate transport providers, to develop and improve the provision of community support services.

We will also improve support to individuals requiring a mental health intervention to enable them to remain in the community and avoid hospital admission. This requires access to suitable housing, access to various forms of transport to be able to fully access community facilities and health and social care.

• We will improve the experiences of Autistic people navigating and engaging in health and mental health services.
• We will work with autistic people to understand any gaps in the provision of health and social care services and feed this into commissioning intentions where and when possible.
• We will continue to support the development and implementation of the Dynamic Support Register for autistic people in Barnsley.
• We will continue to support children and young people with autism through Start for Life and our Family Hubs (up until age 25) where families will have access to relevant information, advice and support.
• We will begin to identify ways to improve the range and options for accessible transport.
• We will work with housing providers to promote understanding of autism and understand the importance of reasonable adjustments to support autistic people.  
• We will contribute to the development and implementation of the Learning Disability and Autism Housing Action plan to improve autistic people’s access to housing that meets their needs and increase the supply and range of quality supported housing.

‘People say I'm an offender and report me, but I don't understand what I've done wrong. No one supports me they just pass me about’. 

‘Responding officers made adjustments for my son's needs to ensure he was comfortable and supported.’

‘Police need to be more present in schools, working with young people to bridge the gap and they are there to help and support not just there for punishment.  More tailored victim support for those with ASD and additional needs.  This needs to be face to face and victims need to be well supported to access this.’ 

‘To stop people doing crime, help with more support and understanding of their needs and why they might do it in the first place’.

‘Support for those people in the system who need additional help due to being autistic.’

Our engagement work told us that some Autistic people have negative experiences with criminal and youth justice systems as victims, witnesses and defendants.

We will look to improve the experiences of autistic people who come into contact with the criminal justice system (as victims, witnesses and defendants) and increase knowledge and understanding across Criminal and youth justice system. This will include work to ensure that reasonable adjustments are put in place, and that victims, witnesses and defendants are able to access the necessary support and services.

A range of services will work together in partnership (including Safer Neighbourhood Teams, Social Care, Health and Criminal Justice Partners) to actively identify and protect Autistic people who are vulnerable to exploitation and to provide wrap around services that support their needs.

• We will improve the knowledge and understanding of autism across the criminal and youth justice systems.
• We will ensure that where possible, there is early identification of neurodiversity, including publicising the autism alert scheme from South Yorkshire Police.
• We will strengthen voice and influence within Youth Justice, developing peer advocates, fostering participation at every level and including young people with protected characteristics in our progression.
• We will aim to introduce the Autism Friendly Award across justice services in the region.
• We will review reports and guidance across the local Criminal Justice Systems to help in understanding the context, needs and reasons for offending, ensuring that sentences are proportionate, services are accessible and appropriate support is given.
• We will ask the police and justice services to produce and publish materials that are easy for autistic people to understand in relation to the Criminal Justice System.

Running alongside this Strategy will be a delivery plan which sets out how we will achieve the commitments in the strategy. The plan will be based on each of the six themes and developed to support each of the theme commitments. The plan will be reviewed and updated annually up to 2030 and monitored regularly throughout the year. Success indicators will be established for the six strategy themes to enable us to monitor progress effectively and have a clear understanding of achievable goals until 2030. Our aim is to bring about change in the lives of autistic people and their families in Barnsley by the end of 2030.

The Barnsley Autism Stakeholder Group will have a role in checking and challenging progress and will work collaboratively with the Barnsley Autism Partnership Delivery Group on facilitating an annual feedback event.

Barnsley Autism Partnership Delivery Group

Multi-agency group of professionals from health, care, education, Council, police, crown prosecution service, justice service and voluntary and community sector. This group intends to include people with lived experience of autism going forward.

Barnsley Autism Stakeholder group

Group of local people with lived experience of autism, including autistic young people and parents of autistic children and young adults, brought together to develop the Strategy.

Co-production 

Co-production is a way of working that involves people who use health and care services, carers and communities in equal partnership; and which engages groups of people at the earliest stages of service design, development and evaluation.

Co-production acknowledges that people with ‘lived experience’ of a particular condition are often best placed to advise on what support and services will make a positive difference to their lives.

Criminal Justice System

The criminal justice system is a group of public organisations that work together to help keep people safe and make sure laws are followed. This includes the police, the Crown Prosecution Service, the courts, HM Prison Service, and the Probation Service. They catch people who break the law, take them to court, and help protect innocent people.

Dynamic Support Register

The register a local area uses to identify individual children, young people and adults with a learning disability, autism or both who are at risk or may become at risk of admission to a mental health inpatient setting without specific and timely dynamic support.

Intersectionality

Intersectionality is the combination of different identities that make up a whole individual. Just like a puzzle, each person is made up of lots of different pieces, like their race, gender, and religion. It’s impossible to understand the full picture until you put all the pieces together.

Reasonable adjustments

Reasonable adjustments are small changes that can help autistic children, young people or adults to have equal access to services and support. E.g. appointments being at a particular time of the day and consideration of the environment where the appointment will take place, in a quiet place or a private room.

Sufficiency Planning

The Council has a statutory duty to ensure there is a sufficiency of school places available to meet the needs of all children and young people living within our authority. This includes the need to secure provision for children with special educational needs and disabilities (SEND).