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Topic on a Page - Autism

Data
Sources:

Autism - Supplementary Information
Published Dec 2016

Autism Data for Lincolnshire

Child and Maternal Health Intelligence Network (CHIMAT): Autistic spectrum disorder (ASD) audit tool

Public Health Outcomes Framework

Public Health England (PHE):

Improving Health and Lives Local Variation of Children with learning disabilities

Autism self-assessment framework June 2019

Further Data Sources:

Scroll to the bottom of the page to view and compare further datasets

Supporting Information:

National Institute for Care and Health Excellence (NICE):

Pathway: Autism Spectrum Disorder Overview

Guidance: Autism spectrum disorder in under 19s: recognition, referral and diagnosis [CG128] 2017

Guidance: Autism spectrum disorder in under 19s: support and management [CG170] 2013

Guidance: Autism spectrum disorder in adults: diagnosis and management [CG142] 2016

Quality Standard; Autism [QS51] 2014

NICE: Learning disabilities and behaviour that challenges: service design and delivery [NG93] Published: March 2018

Conduct disorders in children and young people

NHS Evidence:

Autism

Autism in Children

Autism in Adults

Autism Spectrum Disorder

Asperger's Syndrome

Developing support and services for children and young people with a learning disability, autism or both

Social Care Institute for Excellence (SCIE):

Autism resources and services

Department of Health and Social Care:

Think Autism strategy governance refresh 2018

House of Commons Library Briefing Papers:

Autism: Overview of UK policy and services

ESA and PIP Reassessments

Troubled Families Programme (England)

Local Government Association (LGA):

Ordinary residence guide: Determining local authority responsibilities under the Care Act and the Mental Health Act

Autistica:

Building Happier Healthier Longer Lives: Briefings to improve autism policy and research Published: 2019

Linked Topics:

Topic last reviewed: Dec-17

JSNA Topic: Autism

Background

Autism is a lifelong condition that can be very disabling. It is a spectrum disorder; this means that despite there being a shared core of symptoms, everyone who has autism experiences it differently and is affected in different ways. Autistic people have difficulties with social communication, social interaction and social imagination. Autistic people often experience sensory difficulties, such as over- or under-sensitivity to sounds, touch, tastes, smells, light or colours.

A study cited by the National Autistic Society suggests there are over 700,000 autistic people in the UK – more than 1 in every 100 individuals. Based on this prevalence, it is estimated that there are approximately 7,500 autistic people living in Lincolnshire. The London School of Economics and Political Science (LSE) indicate that autism is the most costly medical condition in the UK; more than the estimated cost to this country of heart disease, cancer and strokes combined. It estimates that autism costs the country at least £32 billion per year in treatment, lost earnings, care and support for autistic children and adults. As it is a lifelong condition, autistic people and their families are often adversely impacted in terms of their health and wellbeing, social integration and their quality of life.

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 they are 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.

Approximately 50% of autistic people also have a learning disability. This means that many autistic people will require access to Learning Disability and/or Social Care Services at some point in their lives.

It is estimated that a quarter of autistic people are non-verbal. This means they cannot functionally communicate with others vocally, and 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 or typed language, sign language, picture cards or digital communication devices.

The autism employment gap,a 2016 report by the National Autistic Society, 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, as well as other causes of mortality associated with economic disadvantage. (Source: The British Journal of Psychiatry).

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. A 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.

Autism is a pervasive development disorder 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 disabilities and there has previously been disagreement, both nationally and locally, as to which it more closely aligns.

Context

National Strategies, Policies & Guidance

Fulfilling and Rewarding Lives was the first national autism strategy and was published by the government in 2010, following the introduction of the Autism Act 2009. It sets out a clear framework for all mainstream services in the public sector to adhere to. The ethos behind the strategy is that public services should improve support for individuals to enable them, where possible, to find employment and lead more independent lives. The key aims of the strategy are to:

  • Help autistic adults access services easily without being subjected to discrimination
  • Improve diagnosis
  • Increase awareness of autism across health, care and community services

This strategy, along with the statutory guidance produced in 2010 to accompany it, provide requirements for local authorities and NHS bodies to follow to help develop their own services and provide support that reflects the needs of autistic people. It aims to encourage improvement in the way that services are delivered.

The government agreed to review the national autism strategy and Think Autism, published in 2014, builds on the themes within the 2010 strategy and sets out a programme of action to improve the lives of autistic people. The updated strategy brings a renewed emphasis on involvement and awareness of autism within the local community and on ways to look differently at support and engagement. A series of fifteen priority challenges for action are identified within three key themes to support autistic people, as follows;

  • An equal part of my local community
  • The right support at the right time during my lifetime
  • Developing my skills and independence and working to the best of my ability

In 2015, updated statutory guidance was released by the government to sit alongside the revised national strategy.

The implementation of the Care Act 2014 provides a coherent approach to adult social care in England and sets out new duties for local authorities and partners and new rights of service users and carers. Some of the responsibilities placed on local authorities following the implementation of 'Fulfilling and Rewarding Lives' and 'Think Autism' are strengthened by the introduction of the Care Act. This is because the new legislation highlights the need for improvement of services and support for autistic people.

The Children and Families Act 2014 has a similar emphasis on personalisation, outcomes and integration of services as the Care Act 2014. However, it provides a change in the way services provide support for children, young people and those with Special Educational Needs and Disability (SEND) but, importantly, looking at the best outcomes for these individuals.

In December 2012 the Department of Health published the "Winterbourne View Review Concordat: programme of Action" following the shocking revelation of abuse at Winterbourne View. This document, aimed at providers of health and social care, local authorities and regulators, was a commitment by stakeholders to a programme of change to improve the quality of care of children, young people and adults with learning disabilities and/or autism and to ensure better outcomes for them.

In October 2015 the local Government Association, Directors of Adult Social Services and NHS England published " Building the Right Support: 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 sets out a requirement for Clinical Commissioning Groups, Local Authorities and NHS England to work together to develop local Transforming Care Partnerships. Lincolnshire's Local Transforming Care Plan outlines the responsibility for the planning, development and implementation of the changes by the end of 2018.

In July 2016 the Westminster Commission on Autism launched their first report, "A Spectrum of Obstacles - an Inquiry into Access to Healthcare for Autistic People". This is an independent cross-party, cross-sector group of Parliamentarians, autistic people, parents/carers, charities, academics and health professionals. Their report identified a number of issues around access to services, including inadequate training of health professionals and a poor understanding of autism and the problems that autistic people face in their daily lives. They recommend an annual health check for autistic people, better leadership on autism within NHS England and improved resources for research and support.

In January 2017, "The Autism Dividend: Reaping the rewards of better investment" was published by the National Autism Project. The report is endorsed by leading charities and experts in the field and calls for more to be done to shape policy and improve practice in autism. It highlights the economic impact of autism in the UK (estimated at £32 billion per annum) and the current inadequate investment in research of £4 million per annum, which is unacceptably low in comparison with other high-impact conditions.

The National Institute for Health and Care Excellence (NICE) released a new indicator in July 2017 recommending the introduction of an Autism GP Register. The intention is that this will help staff to identify and adapt approaches to suit their patient's needs, which will mean that autistic people receive the tailored care they need.

Local Strategies & Plans

In response to the national strategy, Lincolnshire's All-Age Autism Strategy 2015-2018 was launched in April 2015. The Lincolnshire Autism Partnership Board is responsible for the delivery of the action plan contained in the local strategy. The Autism Partnership consists of representation from health and social care, children's services, education, other mainstream public services, voluntary sector organisations, as well as autistic people and their families/carers. The Partnership Board has established a number of working groups to implement the strategy action plan, looking at specific themes, including Awareness and Training, Data and Information and Service Provision.

In light of issues around the current children's autism diagnostic pathway, a service review will be conducted during autumn 2017. The Women and Children's Joint Delivery Board, responsible for commissioning this service, have agreed to establish a Children's Autism Sub-Group, which will also report directly into the Lincolnshire Autism Partnership Board.

A refresh of Lincolnshire's Autism Strategy is expected to be released in April 2018. Work is underway to review what has been achieved over the course of the current strategy period and to engage with stakeholders to identify the key priorities that need to be focused on over the next 3 years, through to 2021. Analysis of progress being made against the national autism strategy and statutory guidance will also be taken into account as an action plan for delivery is produced.

What is the picture in Lincolnshire?

What the data is telling us

Information about autistic people is poor nationally and the national autism strategy requires local authorities to improve data collection. In Lincolnshire we recognised the gaps around data and knowledge about autism and, in response, established a data and information working group as part of our local autism strategy. This has enabled us to begin identifying data sources where they exist and to analyse and evaluate information that we have been able to gather. An example of some of the data now available includes;

  • It is estimated that there are around 7,500 autistic individuals in Lincolnshire
  • Current available data shows that 3,822 autistic individuals are registered with their GP; of these, 72% are children and 80% are male
  • Local data shows that 33% of applications for additional inclusion funding to support pre-school children in Early Years settings were for children with either a diagnosis of Autism or who had 'social communication difficulties'
  • Based on school census data, there are 1,663 children in Lincolnshire recorded with a primary health condition of autism, equating to 1.6% of the total number of pupils in the county
  • 34% attend a specialist school and 66% attend mainstream schools
  • Of the 3,523 pupils in Lincolnshire with either an SEND Statement or Education, Health and Care (EHC) Plan, 21% are for pupils where autism is the primary health condition
  • As at 31 March 2016, there were 343 adults in receipt of adult social care support who are recorded as having autism as a health condition, which represents under 5% of the predicted number of autistic people in the county
  • Of the adults mentioned above, 92 are in long-term residential/nursing care, which equates to 26%, with 74% of people living and receiving their support in community based settings
  • Data on employment figures for autistic people in Lincolnshire is very limited but national figures suggest that only 15% of working age autistic adults are in full time employment

Further information and evidence is available in the Supplementary Data Document.

Information gathered from GP Practices in Lincolnshire in January 2015 found that there were 3,822 known cases of autism. However, this is not systematically recorded as there is currently no national read code for autism, so data recording is patchy and, therefore, it is difficult to compare against other national and regional figures. This indicates that it is unlikely that people are being diagnosed effectively. Those people who are undiagnosed are still likely to have unmet needs and may already be costing authorities money through the misdiagnosis of other conditions and being offered ineffective and inappropriate support and services.

In addition, there are a limited number of autistic people known to be in receipt of adult social care. This suggests that either autistic people are not meeting national eligibility criteria under the current assessment procedures in place or that they are uninterested, unsure or unaware of how to apply for and access support. Alternatively, it may be that their autism has not yet been formally diagnosed or, if it has been, that it is not being recorded properly within social care data systems.

In terms of Lincolnshire's Transforming Care Plan, around one-third of the transforming care inpatient cohort locally has autism and no learning disability. These individuals are often delayed transfers of care once they are well enough to leave hospital due to the limited services and provision available locally and nationally to reduce relapse.

The data from GP Practices reveals that 72% of those diagnosed in Lincolnshire are currently under 18 and the number of people diagnosed drops off with increasing age. Very few people over the age of 35 have a diagnosis. However, it is accepted that the prevalence of autism is not increasing like an epidemic. In fact, the proportion of older autistic people is similar to the proportion of children, but older generations have not been screened for autism and when those people were younger, only classic autism was recognised.

An analysis of the GP data has highlighted a significantly higher prevalence of autism cases within the Lincolnshire West CCG, particularly among younger people. The highest prevalence was found in males aged 14 – 17 in this area, which indicated that there were 68 individuals per 1000 in this cohort with a diagnosis of autism – considerably higher than the national average. If this is a true reflection then we need to consider the number of autistic people who will be transitioning into adulthood with little or no support.

Trend

Autism is a relatively newly recognised condition and historical and prevalence data is lacking. Also, until recently autism as a distinct condition was seldom supported by services, so there is little longitudinal data, both from Lincolnshire and elsewhere.

In 2015/16 new mandatory requirements were introduced for Councils with Adult Social Services Responsibilities (CASSRs) in England to record autism as a health condition as part of the Short and Long Term Support (SALT) annual submission. It is anticipated that this will provide an opportunity for comparative analysis with other local authorities and indications of trends regarding autistic people who are eligible for social care support.

From an analysis of PANSI and POPPI data for 2017, we can see a projected increase in the number of autistic adults in Lincolnshire of 1.9% by 2020. This increase is particularly apparent, amongst both males and females, for older people. The POPPI model predicts the current number of autistic people aged 65 and over in Lincolnshire to be 1655, rising to 1747 by 2020; an increase of 5.6%. It should be highlighted that for the vast majority of individuals of this age their autism will be undiagnosed. Based on the data gathered from Lincolnshire GP Practices in 2015, there is a huge problem of under- diagnosis for this age group.

Key Inequalities

Indications suggest that not only do autistic people have a shorter life expectancy compared to the rest of the population ( The British Journal of Psychiatry) but also their quality of life can be reduced due to the social and sensory difficulties they may face. The Autism Act brought about a breakthrough in the recognition that autistic people are often marginalised and their multifaceted (and often hidden) needs are not being met. Many people struggle through their life without knowing that autism is the root cause of their myriad difficulties. Areas of everyday life that can be affected include educational issues, relationship difficulties, problems with law enforcement, an inability to get a job and remain in employment, difficulties managing a household and finances, as well as mental health issues, such as anxiety.

In July 2016 the Westminster Commission on Autism published an inquiry report called A Spectrum of Obstacles outlining the difficulties autistic individuals faced in accessing mainstream healthcare. Many of those individuals cited did not have any help from social services because they ‘fell between the gaps’, neither having a learning disability nor a mental health condition. It should be noted that there are national eligibility criteria in place regarding the assessment of need for adult social services. However, despite a comprehensive review of practices through the introduction of the Care Act, this assessment still has an element of bias towards physical needs over social and personal needs.

A report by the London School of Economics and Political Science (LSE) states; 'More than 600,000 people in the UK have autism, a condition associated with poor social and communication skills and restricted, repetitive patterns of behaviour. A quarter of people with autism are unable to talk, and 85% do not work full time.'

The fact that only 16% of working age autistic people are thought to be in full-time paid employment emphasises a substantial inequality. Research from the National Autistic Society states that autistic people would like to work full time or part time if appropriately supported by their employer. In time, not only would this be beneficial to the country financially but being in employment would also improve individual's physical and mental health.

Another major concern is the difficulties that autistic people encounter accessing services. This can include mainstream public services, such as primary and secondary healthcare and education, as well as other general services in the business and community sector, including public transport, shops and leisure facilities. Until there is more appropriate recognition of autism, increased awareness and efforts to provide more autism-friendly environments, autistic people will continue to have lower standards of health and wellbeing. Additionally, some autistic people may have further barriers, such as physical and/or learning disabilities, or those who have English as a second language, which will only heighten the inequality and social disadvantages that they face.

The Adult Psychiatric Morbidity Survey (APMS) 2007, states; 'Perhaps most important of all is the finding that adults with autism are socially disadvantaged, less well educationally qualified, less able intellectually and possibly under-supported by services. Much of this could be alleviated with greater involvement of existing established social, educational, welfare and health care services.'

More males are diagnosed as autistic than females in Lincolnshire, which is replicated elsewhere in the country. The gender ratio is approximately 1:4 females to males, i.e. 80% of those diagnosed are male, although a higher proportion of those now being diagnosed in childhood are female. This is nationally recognised and currently being researched by the Lorna Wing Centre for Autism.. It is thought that the recent increase in diagnostic rates for women is due to better screening and an increased awareness of the female presentation of autism. However, early research and clinical opinion from experts in the field of Gender and Autism indicate that women on the spectrum continue to be significantly under diagnosed. Often women are diagnosed with a myriad of other conditions, particularly eating disorders and personality disorders, before their autism is recognised, leading to a much later diagnosis of autism. A BBC News Health Article on the subject from August 2016 highlighted this issue.

Current Activity & Services

Few services available in Lincolnshire are currently autism-specific. With the exception of a small number of providers in the independent sector and some support groups in the voluntary sector, the majority of services used by autistic people are aligned to dealing with learning disability and mental health needs. Without the introduction of services dedicated to autism, it is therefore crucial that mainstream services are adapted to meet the needs of autistic people.

The Learning Disability and Autism Health Service model, launched in May 2016, is provided by Lincolnshire Partnership NHS Foundation Trust. This ensures a NICE compliant autism diagnostic pathway for adults and health liaison for autistic adults regardless of whether they have a learning disability or not. An Autism Lead Nurse function has also been introduced. A 'Reasonable Adjustment Mark' has been developed by the Lincolnshire Autism Partnership to enable services to assess their effectiveness in making reasonable adjustments for autistic people to be able to access their services. Whilst this enhances access to mainstream health and care services for autistic people, specialist autism intervention for those who cannot access mainstream mental health services, despite reasonable adjustments, and for those requiring specialist intervention or care services due to their autism alone, are not currently commissioned locally. Furthermore, no post-diagnostic support is commissioned for any age-group.

Details of services currently commissioned by either Clinical Commissioning Groups or the local authority that are utilised by autistic people and/or their family members are provided in the Supplementary Data Document. Other information can be evidenced in the Adult Social Care Market Position Statement 2015-2018.

Unmet Needs & Gaps

There are a number of unmet needs and gaps relating to autism, including, but not limited to, the following;

  • The Autism Act is yet to be fully implemented (both nationally and locally)
  • There have been problems with the children's diagnostic pathway and provision is currently being reviewed
  • There is a shortage of highly skilled autism specialists in health and social care services. This means that difficulties go unresolved, leading to behavioural and mental health crises for the individuals, impacting on their families
  • Autism without a learning disability – there are no specialist health and care services or pathways for autistic people without a learning disability
  • Access to support from health and social care – it is hoped that the introduction of the Accessible Information Standards in health and social care will have a positive impact in this area
  • Clear post diagnostic pathways for children and adults – following a diagnosis, autistic people and their families currently have little guidance on what, if any, support is available to them
  • Children and young people transitioning into adulthood – there are unprecedented numbers in this cohort with a diagnosis, leading to a need for more adult services, such as supported tenancies, employment support, dietary support, etc.
  • Lack of awareness of autism in adults – there are very few people known to GP's with a diagnosis of autism beyond the age of 35 and better awareness is required to ensure services for older people are appropriately supported
  • Earlier recognition of autism and the provision of appropriate support – this will result in direct savings within health and social care and reduce ongoing costs in relation to care and support
  • Housing needs – there is limited housing provision in Lincolnshire for those people who are autistic but have no other known conditions
  • Autism awareness – increased training opportunities and provision required for staff in universal services and those who support autistic people, as well as for people in the wider community to help autistic people access general services
  • Family carers – there are likely to be autistic individuals supported by family members who are unknown to social services. They need to be identified to ensure that support is available if and when family members become unable (through old age/infirmity/illness, etc.) to provide a caring role
  • Criminal Justice System – autistic people are highly likely to encounter the Criminal Justice System; more information is needed regarding numbers entering the Criminal Justice System and the support that is provided to them
  • Five Year Forward View for Mental Health – this requires an 80% reduction in Out of Area Treatment (OATs) placements by 2021; for this to be realised consideration needs to be given to Mental Health services for autistic people, as prevalence of Mental Health is higher, assessment and treatment more complex and often recovery takes longer due to the duration left untreated in this client group.

It is essential that we have more information about autistic people and their families, the care and services they access and their outcomes. We need more information on the needs of diverse groups of autistic people to ensure there is equality of access, experience and outcomes. We also need improved data to ascertain costs. Currently local spend on autism is impossible to quantify so we are unable to assess whether or not we are using resources effectively and efficiently.

A key issue is the gap in terms of estimated numbers of autistic people and the capacity of the NHS to offer diagnosis. It is estimated that around 50% of autistic people do not have a Learning Disability and many of these are at present unknown to the NHS or to the local authority.

It is important that we identify key local priorities using the data and intelligence available relating to autism in Lincolnshire. We can use this information to improve outcomes for autistic people by targeting services that are being used and making sure that the necessary support is provided for them to be easily accessible and free of any discrimination. This will also have a beneficial impact on friends and family who may care for autistic people, as it will reduce the individual support that they may currently need to provide.

Local Views & Insights

A significant amount of consultation and engagement was undertaken with key stakeholders and autistic people in order to inform the local Autism Strategy. The key messages and themes arising from this are incorporated into and at the heart of the principles contained in the strategy.

A refresh of Lincolnshire's Autism Strategy is expected to be released in April 2018. Engagement work is underway with stakeholders to identify the key priorities that need to be focused on over the next 3 years, through to 2021.

The Lincolnshire Autistic Society, along with a number of more localised autism support groups established in the county, are key organisations involved within the Lincolnshire Autism Partnership. This enables us to engage with autistic people and their families to ensure that we hear about local views, concerns and support needs directly from people with a lived experience of autism.

The Lincolnshire Autism Partnership is the major forum for obtaining local views. It ensures that decisions about support and services for autistic people are co-produced by autistic people and their family members. As part of the attempts to strengthen the Partnership, the need to support autistic people to be involved has been a driving factor. Reasonable adjustments, such as the use of communication cards in meetings, have been introduced. An Involvement working group, known informally as the 'A-Team Network', was established, which predominantly consists of autistic people. An Autism Lived Experience Forum has also been set up, which meets to discuss particular themes and topics that may be of interest to autistic people and their family members. Issues raised at these meetings can then be fed back into the Autism Partnership to review and resolve as necessary.

Examples of key local views and feedback raised through these sources are as follows;

  • Many parents have had difficulty accessing diagnosis for their children
  • Post-diagnostic support needs to be commissioned both for children and adults
  • Increased awareness and understanding of autism is required amongst health and social care staff, especially front-line staff, such as receptionists in GP Practices
  • The transition from Children's Services to Adults Services is a major challenge and the process needs to be much more seamless
  • There is a lack of information and advice about autism and what services and support are currently available
  • Employment opportunities are extremely limited.

Risks of not doing something

Autistic people are often among the most vulnerable and under supported in society. This is in part due to an acknowledged lack of understanding and awareness amongst the general public but also due to lack of diagnosis of the condition and lack of autism-specific services and support being available. The nature of autism means that social situations and experiences are often confusing and difficult to manage, leaving many autistic people subject to or at high risk of abuse and being taken advantage of. Many autistic people have, and continue to experience, anxiety, trauma and other psychological conditions as a consequence of the difficulties they encounter in everyday life.

Average life expectancy for autistic people is much lower than the general population, due to a number of different causes, from a lack of self-care through to incidences of suicide. Mental health conditions are often a common factor for autistic people, but with a correct diagnosis and appropriate services this could be vastly reduced. There are numerous preventative low level support and early intervention measures that, if provided, would be substantially more cost-effective than the current use of public money. The study led by the London School of Economics and Political Science (LSE) states;

'What these figures show is a clear need for more effective interventions to treat autism, ideally in early life, making the best use of scarce resources' and;

'The economic impacts of autism include expenditure on hospital services, home health care, special education facilities and respite care, as well as lost earnings for both people with autism and their parents.'

The national autism strategy was introduced to highlight the unmet needs of autistic people and promote opportunities for them to live fulfilling and rewarding lives. However, statutory duties still remain that are yet to be implemented to the detriment of up to 1% of the population.

Current systems and processes in place across education, health and social care collect a wide range of data around individuals, or patients, however it appears this data is not collated and analysed to maximum benefit. Provision of services for autistic people of all ages can be fragmented from assessment to provision, resulting in delays and additional anxiety and stress for autistic people and their families and duplication of effort across organisations.

What is coming on the horizon?

From a national perspective, there are a series of requirements and targets that the government has set as part of the national strategy and statutory guidance that has been published. It is envisaged that a further review of the national autism strategy will be released in 2019 at the earliest.

At a local level, we are currently implementing Lincolnshire's All-Age Autism Strategy 2015-2018. The strategy includes an action plan to be delivered over the course of those three years. The local strategy is currently being reviewed and a refreshed strategy for 2018 – 2021 is due to be released in April 2018, taking into account national requirements and local opinion of the key priorities for Lincolnshire to progress.

Additionally, a service review of the current children's autism diagnostic pathway is due to be completed in late 2017. It is expected that the outcome of this, following an options appraisal, will be the introduction of a revised diagnostic pathway. As part of this piece of work, it has been agreed to establish a Children's Autism Sub-Group, which will have a duty to report into the Lincolnshire Autism Partnership Board. As well as having responsibilities regarding an impending new children's autism diagnostic pathway, the Sub-Group will also have a remit to review post-diagnostic support that is available.

The NICE recommendation for the introduction of an Autism GP Register should improve the quality of data on autism diagnosis available in summary form and, moreover, improve the primary care of autistic people.

What should we be doing next?

The main priority must be to implement the statutory provisions set out in the national autism strategy, Think Autism and the accompanying statutory guidance at a local level. There are a number of responsibilities set out for the local authority, Clinical Commissioning Groups and NHS bodies that must either be adhered to or progressed in specific areas, including;

  • Training of staff
  • Identification and diagnosis of autism
  • Transition from Childhood to Adulthood
  • Local planning and leadership in the provision of services
  • Preventative support and safeguarding in line with the Care Act
  • Reasonable adjustments and equality
  • Supporting people with complex needs and challenging behaviour
  • Employment for autistic people
  • Working with the Criminal Justice System

Implementation of Lincolnshire's Autism Strategy will continue to be progressed. This includes, but is not limited to, the following;

  • Ensuring that there are clear and appropriate pre and post diagnostic pathways for both children and adults
  • Introduction of Autism Champions across statutory health and social care services, schools, business sector, community services/settings
  • Introduction of an Autism Reasonable Adjustment Mark for health and social care services, businesses and public settings
  • Further improvements to the local Autism Information Hub to ensure that information and advice is available to assist autistic people and their families to get the support they need
  • Increased opportunities and signposting of appropriate autism training packages that are available for parents and professionals
  • Building community capacity to ensure that autistic people play an active role in the community and are supported to lead fulfilling and rewarding lives.

It should be noted that there is no specific budget currently set aside for autism, resulting in a heavy reliance, in most cases, on the goodwill of organisations and individuals connected to the Lincolnshire Autism Partnership to give their time and efforts to help deliver tasks and complete actions within the local strategy.

The Lincolnshire Autism Partnership will continue to work with and listen to autistic people, their families and other key stakeholders to improve services and support for autistic people in the county. It will identify gaps in information and attempt to collate and analyse data from different sources to gain a better understanding of support needs for autistic people in Lincolnshire. This will help commissioners to identify services that autistic people are either using or require and target the need for reasonable adjustments to be made to help people access support that they need.

Commissioning of services for children with special educational needs and disability has been identified as a priority area between the two main commissioners of services: South Lincolnshire CCG (on behalf of and in partnership with all Lincolnshire CCGs) and Lincolnshire County Council. Commissioners need to better understand the population's needs in order to procure the right services for them. A new project to run a children's integrated commissioning team (ICCT) over the next two years will begin a programme of work focusing on the needs of children and young people with SEND, reviewing and commissioning services in a different way.

 

If you need to contact us about this topic, please email JSNA@lincolnshire.gov.uk