Autism

Autism is a form of neurodivergence – a lifelong neurodevelopmental difference in how an individual thinks, feels, communicates, and experiences the world around them, which means each autistic person has a unique combination of characteristics, skills and challenges. The presence or visibility of characteristics can vary a lot between autistic people. This can also change over time, for example in different situations or if the person is masking. It is important not to make assumptions about an individual autistic person’s skills, abilities or support needs (Source: National Autistic Society What is autism). 

Around 700,000 people in the UK are diagnosed autistic, which represents about 1% of the population (Source: BMA Autism spectrum disorder). This is widely acknowledged to be an underestimation as many people with ADHD are undiagnosed, although diagnosis rates are increasing due to broader diagnostic criteria, improved awareness and screening, broader diagnostic criteria and improved awareness and screening (Source: Under diagnosis of autism in England: a population-based study and Around 90% of middle-aged and older autistic adults are undiagnosed in the UK, new review finds | King’s College London). When we look at evidence from other countries, such as the USA, we observe much higher prevalence rates in certain population groups (e.g. 3.2% of children; Source: Data and Statistics on Autism Spectrum Disorder | Autism Spectrum Disorder (ASD) | CDC). Underdiagnosis is especially common in older people (Source: https://www.kcl.ac.uk/news/up-to-90-of-middle-aged-and-older-autistic-adults-are-undiagnosed-in-the-uk-new-review-finds), women (Source: Autistic women and girls ) and certain ethnic groups (Source: Autism identification across ethnic groups: a narrative review | Advances in Autism | Emerald Publishing). When taking into account family, friends, and carers of autistic people, nearly 3 million people are part of the wider autism community (Source: The national strategy for autistic children, young people and adults: 2021 to 2026 – GOV.UK). Autism is classed as a disability under the Equality Act 2010 (Source: Equality Act 2010), although not all autistic people see themselves as disabled (Source: The autism predicament: models of autism and their impact on autistic identity: Disability & Society: Vol 37, No 8). 

Autism is not a learning disability or a mental health condition, but it can co-occur alongside these conditions. Current research suggests that 3 in 10 autistic people have a learning disability (Source: Learning disability and autism | Autistica). Autistic people are also more likely to experience mental health problems (Source: National Autistic Society What is autism). These mental health problems are often diagnosed much later than they are for neurotypical people (Perceived misdiagnosis of psychiatric conditions in autistic adults – PMC; NHS England » Meeting the needs of autistic adults in mental health services).    

Many autistic people share similar experiences with people who have other forms of neurodiversity, such as ADHD, dyslexia, dyspraxia and developmental language disorder. The co-occurrence of autism and ADHD, in particular, has been acknowledged. Current estimates suggest that 38.5% of autistic people also have ADHD (Source: Prevalence of attention-deficit/hyperactivity disorder in individuals with autism spectrum disorder: A meta-analysis – ScienceDirect). 

Autistic people bring unique strengths, insights and creativity to our communities, due to way they interact with the world. Some autistic people communicate orally, while around a quarter of autistic people are non-speaking or minimally speaking (Source: Communication interventions for autism spectrum disorder in minimally verbal children – Brignell, A – 2018 | Cochrane Library). Non-speaking people may communicate through writing, sign language, pictures, devices, sounds or physical gestures (Source: Autism and communication). Support needs also vary between autistic people; Some people need daily assistance, and/or constant supervision, while others live independently (Source: Varying support needs).  

Many autistic people are skilled in attention to detail, problem solving, memory and creativity (Source: Autistic strengths | Autistica) but, when systems do not adapt, autistic people can face unfair barriers. Based on data from the latest Labour Force Survey, 3 in 10 working age autistic people are currently employed (Source: The Buckland Review of Autism Employment: report and recommendations – GOV.UK). A study by the London School of Economics found that the economic impact of autism in the UK is at least £32 billion a year, which is higher than the cost of heart disease or cancer. [Source: https://nationalautistictaskforce.org.uk/national-autism-project/autism-dividend/). 

Autistic people often experience loneliness due to social exclusion or feeling misunderstood. This can be due to lack of acceptance or understanding in society (Source: Loneliness). Autistic adults who desire friendships but struggle to develop and sustain them may be at increased risk of depression and low self-esteem (Source: Interactive Autism Network). 

Health inequality is a serious concern. Research involving people with a formal diagnosis of autism suggests that autistic people may have a life expectancy between 6 and 16 years shorter than average (Estimating life expectancy and years of life lost for autistic people in the UK: a matched cohort study – PubMed) (Premature mortality in autism spectrum disorder | The British Journal of Psychiatry | Cambridge Core). There are higher rates of premature death due to epilepsy or suicide in this population, as well as other causes of mortality associated with economic and social disadvantage (Source: The British Journal of Psychiatry, 2018). For suicide in particular, risk markers in autistic people include unmet support needs, camouflaging, having a thwarted sense of belonging and feeling a burden on people. (Source: Is Camouflaging Autistic Traits Associated with Suicidal Thoughts and Behaviours? Expanding the Interpersonal Psychological Theory of Suicide in an Undergraduate Student Sample | Journal of Autism and Developmental Disorders). These inequalities in life expectancy highlight the need for better healthcare, more inclusive systems and meaningful support. 

Inequalities experienced by autistic people led to the development of the Autism Act 2009 — the first law in England focused on the needs of one specific group. It aims to ensures autistic people receive the support they need. Following this, the National Autism Strategy for adults was created, with clear guidance for local authorities and the NHS. The All-Party Parliamentary Group on Autism regularly reviews progress. In 2021, the Government introduced a new all-age national strategy (2021-2026) for autistic children, young people, and adults. It builds on previous plans and focuses on: 

• 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

   

The strategy is supported by important laws: 

• The Care Act 2014 which ensures autistic adults and their cares are entitled to assessments and appropriate levels of support. 

• The Equality Act 2010 which protects autistic people from discrimination and requires reasonable adjustments in education, work, and healthcare. It also encourages employers to recruit from underrepresented groups including autistic people. 

• The Children and Families Act 2014 which aims to improve services for children and young people with special educational needs and disabilities (SEND), ensuring coordinated education, health, and care support. 

• The Health and Care Act 2022 requires health and social care workers in CQC registered settings to receive autism and learning disability training that is appropriate to their role.  This helps ensure care is safe, compassionate, and informed. Oliver McGowan Mandatory Training is the government preferred training.  

These laws underpin the NHS Long Term Plan which commits to better understanding and supporting people with learning disabilities and autism. Over the next five years, the NHS will apply national standards to improve learning disability and autism services. They will also work closely with education and local authorities to enhance support for children and young people. 

In 2017, NICE recommended creating an Autism GP Register so healthcare staff can identify autistic patients and tailor care. Patient records now include a “digital flag” showing if someone is autistic or has a learning disability. 

In 2015, Building the Right Support set a national plan to improve community services and reduce inpatient care for autistic people and people with learning disabilities, especially those displaying distressed behaviours. It called for collaboration between the NHS, local authorities and Clinical Commissioning Groups through Transforming Care Partnerships (TCPs). Lincolnshire’s TCP has a three-year plan, updated in 2022, reflecting priorities from the local autism strategy to transform care. 

In addition to working within the autism strategy, close links are being made with the Mental Health, Dementia, Learning Disability and Autism Inpatient Strategy to understand where the system can streamline to improve services and reduce length of stays. 

Autism is not recorded consistently across health, education and social care systems and this impacts on the accuracy and reliability of intelligence about the autistic population. For example, a setting may document that a person has a disability but not specifically identify that they are Autistic. Additionally, many children and adults in Lincolnshire may be awaiting a diagnosis or self-identify as autistic but not seek a diagnosis; both of these groups will be missing from local populations of autistic people in official statistics. 

Our most complete source of information on autistic people is the Optum Population Health Management (PHM) dashboard, which brings together patient records from multiple parts of the local NHS to provide as comprehensive picture as possible of healthcare use in Lincolnshire. Between July 2024 and June 2025, the Optum PHM dashboard recorded 6,530 children aged 0-17 years-old with autism spectrum disorder and 8,277 adults (18+). The highest prevalence is found in those aged 10-19 years-old, with 6.0% of this cohort being diagnosed with autism (Source: Optum PHM Dashboard). Of the 14,807 people in Lincolnshire with autism 39% are between the ages of 10-19, while a total of 65% are aged 10-29 years old. Just 132 of the 65+ Lincolnshire population are diagnosed with autism. 

Individuals with autism experience notable health disparities throughout their lives, resulting in reduced life expectancy and a higher rate of preventable deaths compared to the general population. For example, in November 2023, the Learning Disability Mortality Review (LeDeR) published a report that found that the median age at death for autistic people with a learning disability was 55 years. This is considerably lower than the general population with a median age at death for females of 86.1 years and 82.6 years for males. 

The review revealed that 42% of deaths among individuals with a learning disability, including autistic people, were considered preventable, nearly double the 22% observed in the general population. Avoidable deaths are defined as “deaths where, if certain possible and reasonable steps were taken, then the death may not have happened in the way that it did, and it therefore can be classed as having been avoidable” (Source: Inequalities in healthcare and employment for people with a learning disability and autistic people – Women and Equalities Committee).  

Autistic people experience disproportionately high rates of avoidable premature mortality due to systemic barriers in healthcare access. A major contributor is diagnostic overshadowing, where clinicians misattribute physical or mental health symptoms to autism, delaying or preventing appropriate treatment. Studies show that autistic people often encounter communication difficulties, sensory overload in clinical environments, and rigid appointment systems, which lead to missed screenings and late diagnoses of treatable conditions (Hirvikoski et al., 2016). Coroners’ reviews in England found that over half of preventable deaths were linked to inadequate autism awareness among healthcare professionals (Norris et al. 2025). Commonly overlooked conditions include epilepsy, gastrointestinal disorders, and autoimmune diseases, which are frequently dismissed as behavioural issues rather than investigated medically. 

A greater proportion of people diagnosed with autism spectrum disorder live in the more deprived areas of Lincolnshire. Of those that live in the 10% most deprived areas (Index of Multiple Deprivation (IMD) 1), 2.8% have a diagnosis of autism while 2.6% of people who live in IMD 2 areas have a diagnosis of autism. Comparatively, those that live in the 20% least deprived areas (IMD 9 and 10) 1.3% have a diagnosis of autism (Source: Optum PHM Dashboard). Local data also highlights higher mental health medical activity in autistic people. Autistic people have on average 3 mental health contacts per person per year (PPPY) compared with the general population at 0.3 mental health contacts PPPY (Source: Optum PHM Dashboard).  

The number of people with an autism diagnosis is likely to increase as improvements to diagnostic pathways and services are made. 

To have a greater understanding of autism and the impact on education, please view SEND and School Achievements for more information. 

In 2023, following extensive engagement with autistic people across Lincolnshire, the Lincolnshire Integrated Care System (ICS) agreed an All-Age Autism Strategy 2023-2028. The strategy describes priorities for working collaboratively in Lincolnshire to embed the national autism priorities for residents of Lincolnshire. The six priorities are:  

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

The implementation of this strategy is supported by the Lincolnshire Autism Partnership Board. This Board brings together professionals working to support autistic people and their families and carers in Lincolnshire, and representatives from the autistic community, to improve health and care outcomes for autistic people. To learn more about the work of the Lincolnshire Autism Partnership Board please see the latest annual report. 

The Virtual Autism Hub is a non-clinical service that can support anyone with or without a diagnosis of Autism, empowering people to access services and supporting with individual needs.  Team members contact or meet in whatever way and place is convenient to those requiring support. 

The children and young person autism pathway is currently led by community paediatricians, and can be accessed through school, as well as the Virtual Autism Hub, GPs or other local children’s health professionals. 

The adult autism pathway is led by Lincolnshire Partnership Foundation Trust (LPFT) and can be accessed through the GP, the Virtual Autism Hub or any clinical professional working within LPFT. LPFT also provide an Enhanced Support and Liaison Service for autistic people, which seeks to prevent unnecessary and inappropriate admissions and or placement breakdown. And the Dynamic Support Register also seeks to improve community support for people with a learning disability or autism. 

An Autism and Learning Difficulty Outreach Service is provided by Gosberton House Academy and led by the Working Together Team, helping education settings in Lincolnshire to better support autistic children and young people and those with mild, moderate, and severe learning difficulties and social communication challenges which impact on cognitive development and learning potential. 

A CYP Keyworker Service is provided by LPFT to support young people up to 25 and the families who are autistic and/or have a learning disability and on the Lincolnshire Dynamic Support Register (DSR) at high-risk of being admitted or already admitted to hospital. 

Specialist Nursing for autistic (or suspected) children and young people is led by United Lincolnshire Teaching Hospitals Trust (ULTH) and provides support and education to health, care and education professionals who are working with autistic or suspected autistic individuals aged 0–19 years.  

Community and stakeholder views lie at the heart of the All-Age Autism Strategy and its implementation as demonstrated by: 

• The composition and terms of reference of the Lincolnshire Autism Partnership Board and the commitment of the Board to work in a coproduced manner.  

• The significant presence and active contribution of autistic people on all working groups. 

• The Virtual Autism Hub provides support for autistic people, their parents and carers. The hub was created to be largely staffed by people with lived experience and leads to represent the views of different cohorts of the autism community e.g. adults, children and young people. The hub works closely with community groups and service providers to support them to engage with the autistic community.  The hub has also provided community investment grants to local community groups supporting autistic people. This work also supports the waiting well and early support offer in Lincolnshire. 

The Lincolnshire Autism Partnership Board has identified several areas where support for autistic children, young people, adults, and their families/carers needs to be strengthened. We continuously work together to identify improvement opportunities and gaps in support and so this section reflects a snapshot in time. 

Improving Understanding of Autism

• Support for autistic adults and parents to better understand autism, recognising that needs may change over time. 
• Ensuring that we have the right training and support available to address gaps in professionals’ understanding of autism. This should reflect current levels of awareness and the nature of professional involvement, recognising that a one size fits all approach is not best practice.
  
  

Diagnostic Pathways

• Development and implementation of a new 0–18 autism diagnostic and support pathway, co-designed with autistic individuals and specialist clinicians. The new pathway will focus on support for the children/young people and their family, along with shorter waiting times and a simpler patient journey, it includes a dedicated access/navigation team and specialist support for sensory processing difficulties. 
• Pathway development should consider co-occurring neurodiversity and how these can interact.

Ongoing Support

• Pre- and peri-diagnostic support for children and families to promote “waiting well” through needs-led offers. This should consider increasing autonomy and plan for signposting to the most up to date information. 
• Post-diagnostic support for children, young people, and their families/carers, including: 
• Structured courses or comprehensive information packs for parents and carers to help process and understand a diagnosis.
• What good ongoing support for young people looks like as they transition through different life stages (e.g., adolescence to adulthood).  
• Ensuring that there is a diagnosis and support pathway for all ages, recognizing that recommendations and reasonable adjustments differ for children, teenagers, and adults.

Reasonable Adjustments

• Understanding the current use of initiatives that seek to make reasonable adjustments for autistic people in Lincolnshire. 
• Identification of good practice from other areas and exploration of how reasonable adjustments can be embedded locally.

The Lincolnshire Autism Partnership Board will continue to work together as system partners to deliver the Lincolnshire Autism Strategy, whilst individual partner organisations continue to deliver support for autistic people in line with their statutory responsibilities.

• Autistic Girls Network
• Autistica
• Ambitious About Autism
• Informing Autism Service Improvement Through Lived Experience Insight (NHSE/I Midlands 2021)
• National Autistic Society
• Social Care Institute for Excellence
• The Autism Act – 10 years on
• Think Autism