Autism

Autism is a lifelong neuro-developmental difference in how an individual thinks, feels, communicates, and experiences the world around them. Sometimes these differences can cause difficulties and distress for an individual or their family. This often comes from living in a world that does not accommodate or make reasonable adjustments for the Autistic person, their families or carers at school or at work. Occasionally, difficulties are related to specific differences an individual may experience.  

Some people view autism as a developmental disability, although it is important to recognise that there are differing opinions on this and not all autistic people see themselves as disabled. With an estimated 700,000 autistic adults and children in the UK – approximately 1% of the population – most people probably know someone who is autistic. In addition, there are an estimated 3 million family members and carers of autistic people in the UK (Source: Department of Health & Social Care).  

Autism affects the way a person communicates and how they experience the world around them. While autistic people share some similar characteristics, they are also all unique. Autism is considered a spectrum condition, however, this isn’t linear from high to low but varies, as one person varies from another. Some autistic people are able to live relatively independent lives, but others may face additional challenges. Some autistic people have learning disabilities, meaning their support needs are different (Source: Ambitious About Autism). Others may have specific learning difficulties such as dyscalculia, dyslexia, or other neurodevelopmental conditions such as dyspraxia or developmental language disorder (DLD). 

It is estimated that a quarter of autistic people are non-verbal. This means they cannot functionally communicate with others vocally. This also includes people who have the ability to speak but lack the ability to use language in a meaningful way. And others, who cannot use spoken language at all, but who are able to communicate with written language, signed, typed, picture cards or digital communication devices. Non-verbal communication needs can present without any learning disability or learning difficulty. Autism can present as a disconnect between verbal ability and other skills and abilities; e.g. cognitive skills, or emotional intelligence, amongst other competencies. 

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. While autism is not a learning disability, around 4 in 10 autistic people have a learning disability (Source: Autistica). 

It is estimated that around 1 in 10 people across the UK are neurodivergent, meaning that the brain functions, learns and processes information differently (Embracing Complexity Coalition, 2019). Some autistic people will need little or no support in their everyday lives while others may need high levels of care, even 24-hour residential support. Help covers a wide range of subjects; forming friendships; coping at school; managing at work; or being able to get out and about in the community. 

A report by the National Autistic Taskforce indicates social exclusion of autistic people and their family carers costs the country at least £32 billion per year in treatment, lost earnings and in the care and support of autistic children and adults. This is more than the estimated cost to this country of heart disease, cancer and strokes combined. 

Autistic people find many everyday experiences stressful, making mental health problems more likely. It is widely recognised that when autistic people experience mental health problems, the problem is often diagnosed much later, as the symptoms may be masked by the autism or present differently to a non-autistic presentation, resulting in a misdiagnosis and / or diagnostic overshadowing. 

Individuals who don’t have opportunities to socialise, find it difficult to socialise, feel misunderstood, or unable to be themselves, may experience loneliness. “Research suggests that autistic people are more likely to experience feelings of loneliness compared to non-autistic people. This can be due to lack of acceptance or understanding by society, making them feel excluded” (Source: National Autistic Society). “Adults with autism, who desire friendships but do not have them may be especially vulnerable to depression and lower self-esteem” (Source: Interactive Autism Network). 

The autism employment gap report (2016) suggests that only 16% of working age autistic people are in full time paid employment. Autistic people are also likely to have a life expectancy that is 16 years less than the general population, with a particularly high incidence of death from epilepsy and suicide, or other causes of mortality associated with economic and social disadvantage. (Source: The British Journal of Psychiatry, 2018) Autism is a pervasive development difference and so is neither a mental health condition nor a learning disability. However, from a budgetary perspective, autism is usually associated with either mental health or learning disability. 

In light of the inequalities faced by autistic people, the Autism Act 2009 was introduced. This was the first ever act to address the needs of one specific impairment group in England and was introduced to make sure that autistic people get the help that they need. The National autism strategy for adults in England was subsequently published following this, with statutory guidance advising local authorities and NHS bodies of their requirements to meet the needs of autistic people. The All Parliamentary Group on Autism have reported on the progress made since the introduction of the Autism Act. 

In 2021 the Government produced the first all age national strategy (2021-2026) for autistic children, young people and adults. This is in addition to the original national autism strategy and includes the following priority areas: 

• 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 

Co-design and co-production with individuals, families and carers with lived experience are core values of the local and national autism strategies. Care should be taken that these values are embedded in support and services working to achieve the aims of the strategy. 

The work within the all-age National Autism Strategy is underpinned by legal frameworks: 

• The Care Act 2014 provides a coherent approach to adult social care in England and sets out duties for local authorities and partners around the rights of service users and carers. Autistic people are entitled to a care act assessment of needs. Carers of autistic people can independently access a carers assessment, as a reflection of the support and recognition required for those with careing role. 
• The Equality Act 2010 provides legislated protection for autistic people (with or without a learning disability) and states that where an individual with a protected characteristic (such as a disability) is disadvantaged to those without the characteristic in accessing a provision, service or information, reasonable adjustments must be provided to allow equal access – in education, employment and healthcare. This allows employers to take positive action to recruit under-represented or disadvantaged groups (such as autistic people) ensuring appropriate representation within their organisation. 
• The Children and Families Act 2014 instigated a change in the way services for children, young people and those with Special Educational Needs and Disability (SEND) are delivered – looking at the best outcomes individuals. Local authorities and partner commissioning bodies must make arrangements for education, health and care provision to be secured for young people with SEND.  

There is a commitment towards promoting a greater understanding of the needs of everybody with learning disabilities and / or autism in the NHS Long Term Plan. 

The Health and Care Act 2022 introduced a requirement for CQC-registered service providers to ensure employees receive learning disability and autism training, as appropriate to their role. This will ensure the health and social care workforce have both skills and knowledge to provide safe, compassionate and informed care to people with autism or a learning disability. This will be known as the as the Oliver McGowan Mandatory Training for Learning Disabilities and Autism. 

Over the next five years, the NHS will implement national, learning disability improvement standards across all its services. The NHS will also work with the Department for Education and local authorities to improve support for CYP with learning disabilities and autism.  

In 2017, the National Institute for Health and Care Excellence (NICE) announced a new indicator, recommending the introduction of an Autism GP Register to help staff identify and adapt approaches to suit their patient’s needs. By 2023/24, a “digital flag” in patient records will signify to staff that someone is autistic and / or has a learning disability. 

In 2015, the Local Government Association, Directors of Adult Social Services, and NHS England published Building the Right Support. The report outlined a national plan to develop community services and close inpatient facilities for people with a learning disability and/or autism who display behaviour that challenges, including those with a mental health condition. The document set out the requirement for Clinical Commissioning Groups, Local Authorities and NHS England to work together to develop local Transforming Care Partnerships (TCP). Lincolnshire’s TCP has a three-year road map, that was reset in April 2022, to map the priorities in transforming care for autistic people and people with a learning disability. The road map includes priorities taken from the local autism strategy. 

Mechanisms for accurate recording of autism are not consistently available across health, education and social care systems meaning actual reliable figures are currently unavailable. For example, it may be documented that an individual is identified as having a disability within a particularly setting, but not specifically identified that they are Autistic.  

In 2021-22, approximately 156 adults (aged 18+) and 192 young people (aged under 16) in Lincolnshire were diagnosed as autistic, according to Lincolnshire NHS mental health data collection.  This does not include diagnosis given in private practice, by an out of area referral or by any process beyond the standard autism diagnostic pathways. 

Nationally autism is underdiagnosed amongst certain groups such as older people, those who identify as females and individuals from Black, Asian and minority ethnic groups. This is due to the assessment tools used in autism diagnosis and limited awareness of the ways in which autism can present in different groups. Estimated numbers of individuals living with autism in the local community are likely to increase, as improvements to diagnostic pathways and services are made. 

Prior to the publication of the 2021 all-age autism strategy, the Lincolnshire system was working towards the priorities in the Lincolnshire All-Age Autism Strategy 2019-2022 and the 5 priority areas which were incorporated into the three year TCP roadmap: 

• Getting a timely diagnosis and support throughout the diagnosis process  
• Everyday services make reasonable adjustments and staff are aware of autism  
• Support through transitions and other major life changes  
• Recognising an individual’s autism and adapting support for additional needs and distressed behaviour  
• Making sure family/carers get the help and support they need 

Lincolnshire Integrated Care System are committed to co-design and co-production of Autism services and provision, including some user-led elements. 

Following the publication of the all-age autism strategy in July 2021, a public engagement exercise took place via an online survey and five workshops. Intelligence from system partners’ user groups, regional (Informing autism service improvement through Lived Experience insight, NHSE Midlands Autism Workstream) and national guidance will also be incorporated into the next iteration of the strategy.  By March 2023, there will be a refreshed all-age autism strategy and a specific local action plan.   

The Lincolnshire Autism Partnership Board is responsible for the delivery of the local strategy’s action plan. The Autism Partnership comprises representatives of health and social care, children’s services, education, voluntary sector organisations, other mainstream public services, autistic people, and their families and carers. The Partnership Board will establish several working groups and ‘task and finish’ groups to implement the plan. 

See above 

Very limited data is available disaggregated for people with autism. This lack of data makes it very difficult to understand local needs and to design and develop services and support to meet that need.  

There have been difficulties in completing delivery of the children’s and adult’s diagnostic pathways.  Referrals currently exceed capacity for assessment. There is no current provision for diagnostics for 16-18-year-olds. Whilst interim measures have been taken in 2021 and 2022 to tackle long waiting lists and waiting times, the entire neurodevelopmental pathway is currently subject to review.  

There is a shortage of highly skilled autism specialists in health and social care services. At times, this means difficulties remain unresolved and can result in behavioural and mental health crises for individuals, with additional impact on families and carers. 

Specific and targeted support for individuals and families of autistic CYP who are school avoidant has, anecdotally, been an increasing concern since the COVID pandemic. Similarly, support for autistic CYP who are at risk of exclusion from school. 

Steps have been taken to increase capacity and expertise in mainstream mental health services for people with autism without a learning disability. However, there are still limited specialist health and care services or pathways for autistic people without a learning disability or for those who are in a mental health crisis. 

It is hoped the introduction of Accessible Information Standards in health and social care will have a positive impact  on access to support. 

Wellbeing and other Public Health related services – There is currently no specific offer for autistic people. Work is in progress to consider improved access to these services and for people who are awaiting a formal autism diagnosis. 

Clear post-diagnostic pathways for CYP and adults – A time-limited post diagnostic support offer is now available for adults who have received a diagnosis in local services within the last two years.  But there is no structured post-diagnostic support for CYP. Autistic people, their families and carers currently have little structured or clear guidance on what, if any, support is available to them. 

General autism awareness – increased training opportunities are required for staff in universal services; for those who support autistic people; and for people in the wider community. There are very few people aged 35+ with a diagnosis of autism and better awareness is required to ensure services for adults and older adults are appropriately supported. 

An earlier recognition of autism with provision of appropriate support will result in direct savings within health and social care and reduce on-going costs. 

An overall shortage of affordable housing for people with disabilities in Lincolnshire can be a challenge to autistic people. 

Family and carers supporting autistic people can only be ensured support if they are identified by the health and care system. This is especially true if they become unable to continue care due to age, infirmity, illness, etc. The reality that family carers may themselves be autistic should be taken into consideration. 

Autistic people may be more likely to encounter the Criminal Justice System (CJS). Most often this is as a victim, but possibly as an offender.  Access to justice is impeded for autistic people at every part of the CJS. More information is needed regarding numbers entering the CJS and the support provided to them. 

• Continued development of the Autism Partnership Board in Lincolnshire to support autistic people, their families, and carers. 
• Develop an autistic adult forum within Lincolnshire, co-led by autistic people, for autistic people, which will inform the Autism Partnership Board directly, ensuring autistic adults are well represented.  
• Refresh the 3-year autism strategy for Lincolnshire and develop a workplan and programme infrastructure to deliver this. 
• Complete a countywide service mapping exercise to create a comprehensive map of support services encompassing voluntary, third sector, social enterprise and statutory services. This will then be available in accessible formats to individuals, families, and carers. 
• Develop a co-produced, neurodevelopmental pathway review and redesign to address current priorities and identified gaps in services. This will include consideration of the all-age pre diagnostic and post-diagnostic support across all sections of the integrated care system.  
• Following review and redesign of services, a procurement process will follow. 
• Evaluate the impacts from the redesigned pathway using structured engagement to test performance against set outcomes. 

• 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