New JSNA: This is the test site for the new Joint Strategic Needs Assessment

Autism

Introduction

Autism is a condition that affects people in a variety of different ways and degrees.  In 2015, Reading Borough Council (RBC) published the Reading's Autism Strategy for Children, Young People and Adults 2015-18, which outlines the commitments the organisation has made to improve the lives of people with autism in Reading.  The Strategy set out how RBC aims to achieve this through commissioning and delivery of services and close working with partners locally. As a part of the development of the Strategy, the Berkshire Autistic Society (BAS) carried out an assessment of needs of the people with autism in Reading and the services available.  The following is an overview of the outcomes of this very important piece of work.   

What do we know?

The term "autism" is often used as an umbrella description for all autism conditions, including Asperger's Syndrome, that fall under the headings of Autism Spectrum Disorder (ASD) or Autism Spectrum Condition (ASC).  Autism is a lifelong developmental disability that affects how a person communicates with and relates to others, how a person learns and makes sense of the work and processes information.  People who are on the autistic spectrum can sometimes share difficulties in one or more of the following three areas:

  • Social communication (e.g. understanding verbal and non-verbal language)
  • Social interaction (e.g. recognising and understanding other people's feelings)
  • Social imagination (e.g. restrictive repetitive patterns of behaviour)

As a spectrum condition, autism affects people in varying ways and requires differing level of support.  Some people with autism live independent lives, but others need a lifetime of specialist support.  Autistic people may have other co-existing conditions, such as a learning disability, or mental health needs, but autism is neither a learning disability nor a mental health problem (Brugha et al, 2012). We use the terms "people with autism" and "autistic people" in this chapter. 

Autism is often a "hidden disability", meaning that it is not always possible to tell that someone has the condition, this makes raising awareness of the condition even more important.  People with high-functioning autism may go for many years without a diagnosis, even if they experience less obvious difficulties. Regardless of how a person's autism affects their lives and the lives of their family and carers, locally we want to ensure there is appropriate awareness, support, information and advice available to help people live a fulfilling and rewarding life. 

The National Autistic Society estimates that around 1.1% of the UK population may be on the autistic spectrum, or around 700,000 people. This is a broad estimate, however, with the true proportion likely to fall between 0.3% and 1.9%. (National Autistic Society, Accessed 2016; Brugha et al, 2012) and local experts suggest that the proportion of people in Reading with autism may be higher, estimated to approximately 2000 people (roughly three quarters adults and one quarter children and young people).

The Projection of Adults Needs and Service Information (PANSI) suggests an increase of the number of working age adults (aged 18-64) with autism in Reading over the next twenty years, rising to 1,114 people by 2030 (PANSI). The increase is expected to be driven by children and young people with autism growing older; as well as people moving to Reading for jobs and education. This anticipated increase means that it is important that there are appropriate services and support in place to meet this need.

While there is no evidence that autism is more prevalent within any particular ethnic groups, growing ethnic diversity in Reading's population will mean that services and support will need to continue to be mindful of the need to provide a culturally competent and culturally sensitive service that is accessible and responsive to those that need it. Between 2001 and 2011, the proportion of residents identifying with an ethnicity other than White British increased from 13.2% to 33.1% (RBC, 2012) and applying estimated prevalence to census data suggests there are likely to be some 500 people from black and minority ethnic (BME) groups with autism in Reading, of whom around a quarter are likely to be aged 18 or younger.  

Comparing these prevalence estimates with the numbers known to Reading Borough Council services demonstrates that only a small proportion are likely to be receiving support and that many may not have had their condition diagnosed. The number of people known to social care services only represents a small proportion of the actual number of people with autism. 

Social Care

Reading Borough Council's statutory returns to the Health and Social Care Information Centre (HSCIC) record 156 people with autism in Reading receiving support in July 2015.  Figure 2 below shows that the numbers were highest for children and young people, with 40% (62 individuals) of those known to social care are aged 19 or younger. This reflects a trend for increasing numbers of diagnoses in younger age groups and suggests that those in older age groups are less likely to be receiving support.  

Figure 2. People with Autism known to Reading Borough Council social care by age group (July 2014). 

image1

Source: Reading Borough Council statutory return

Of those adults with autism who met the threshold for social care support, a majority (59%) also had a learning disability.  A smaller percentage (6%) of the autistic adults meeting the eligibility criteria also had a mental health problem.

Information on the diagnosis pathway for adults with autism shows high demand, with a waiting time of 28-30 weeks for assessment - an increase on the previous years.  Of those seen for assessment by the service between April 2013 and March 2014, 46% received a diagnosis of autism and 38% received a partial diagnosis of autistic traits. 

Education

Pupils with ASD as a primary need represent a significant proportion of those with a statement of special needs and a higher proportion than average appear to face exclusion. In the 2013-14 academic year, information collected by Reading schools for the Department of Education indicate that 105 pupils in Reading had a Statement of Special Education Needs that identified ASD as the primary need - 19% of all pupils with a statement.  Of those pupils who were excluded from school during the first two terms of the academic year (September 2013-April 2014), 19 children had ASD as the primary need on their statement. This represents 20% of all exclusions for pupils with a statement and around a fifth of all children with ASD as a primary need.  It also reflects a national trend, with considerable numbers of children with autistic spectrum disorder facing exclusion, including 'unofficial exclusion' where parents are asked to keep their children at home without officially excluding (National Autistic Society; Ambitious about Autism; Redman et al, 2009).

Absence rates also appear to be higher than average. For the first two terms of the 2013-14 academic year at Reading schools are recorded as 5.7% for pupils with ASD as the primary need, slightly higher than the 4.6% absence rate for all pupils, although lower than the 7.6% absence rate for all pupils with statement. 

It should be noted that these data reflect only those pupils with an autism diagnosis and a statement that identifies this as their primary need, and not those with a lower level of need or without a diagnosis.  Parents and carers have raised concerns about children with autism being "unofficially" excluded, although data isn't available to evidence this. 

National and Local Strategies

There are a number of government policies and guidance to support adults with ASD, details of these are generally published by the Department of Health and can be located on their website here. There are however, some very key publications and these are:

The 2009 Autism Act (HM Government, 2009) and the first national Autism Strategy in 2010, Fulfilling and Rewarding Lives (HM Government, 2014) set the national vision for improving the lives of adults with autism.  The Department of Health (DoH) published the updated Think Autism Strategy in 2014, reaffirming the importance of five areas for action in the original strategy:

1.    Increasing awareness and understanding of autism

2.    Developing clear, consistent pathways for the diagnosis of autism

3.    Improving access for adults with autism to services and support

4.    Helping adults with autism into work

5.    Enabling local partners to develop relevant services

The Care Act 2014 (HM Government) introduces a wide range of changes to care and support for adults, including a national eligibility criteria and updated rules for assessment and support planning.  It gives local authorities a new duty to ensure people can access preventative services and information and advice about care and support.  The Care Act gives carers the right to an assessment of their needs in their own right. 

Whilst there is no equivalent national strategy for children with autism, there are significant changes to the law for children and young people with special educational needs and disabilities (SEND)

through Children and Families Act 2014. This includes the introduction of Single Education Health (SEN) Care Plans (EHCPs) to replace SEN statements.  EHCPs last until a person turns 25 to allow for more seamless transition between children and adults services.  Carers of disabled children also gain similar rights to assessment of their needs as outlined in the Care Act6. 

The National Institute for Health & Care Excellence (NICE) regularly updates its clinical guidelines which advises on the standards of support for people with autism.  These are available on the NICE website here.

Reading's Autism Strategy for Children, Young People and Adults 2015-18 aims to align existing local plans and strategies across the wide range of areas that provide support for people with autism.  Some of the other key documents for Reading include:

Health

  • Reading's Health & Wellbeing Strategy

Children & Young People

  • Reading's Special Education Needs and/or Disability (SEND) Strategy
  • Reading's Early Help Strategy

Adults

  • Reading's Adult Learning Disability Partnership 'Big Voice' Workplan
  • Berkshire West's Joint Commissioning Plan for Services for People with Learning Disabilities and Challenging Behaviour
  • Reading's Market Position Statement for Adult Social Care
  • Reading's Prevention Framework and Reading's Adult Social Care Information & Advice Plan

What is this telling us?

Reading's Autism Strategy has helped identify 6 clear local priorities which are aimed at improving the health, wellbeing and support for people with autism in Reading.  These are:

  • Priority 1 - Increasing awareness and understanding of autism
  • Priority 2 -  Improving access to diagnosis and beyond
  • Priority 3 - Support better life outcomes for people with autism
  • Priority 4 - Support people with autism to live safely and independently as possible
  • Priority 5 - Support families and carers of people with autism
  • Priority 6 -  Improve how we plan and manage support

These are generally consistent with the key areas of action identified in the National Autism Strategy Fulfilling and rewarding lives (HM Government, 2014). Reading's local Strategy forms the basis for a local action plan, which is overseen by Reading's Health and Wellbeing Board.

What are the key inequalities?

Autism is a serious and often disabling condition and without the right diagnosis and support, can often result in disparities in someone life. These inequalities can be educational, health, social and employment for example there is national evidence that shows that only 15% of people diagnosed with autism in the UK are in full-time paid employment.  A high proportion of students excluded from school have been diagnosed with autism (Redman et al, 2009). One in three adults report experiencing severe mental health difficulties due to the lack of appropriate support.  It is also reasonable to conclude that many people with autism are socially isolated from parts or all of the mainstream communities in which they live and, not necessarily by choice. 

Nationally it is estimated that a high number of people with autism remain undiagnosed and evidence suggests that more awareness of the condition is needed in order to reduce inequalities experienced by those without a diagnosis and support to manage their condition. 

This section links to the following sections in the JSNA:

Learning Disabilities

General Wellbeing

Mental health

Housing and Homelessness

Employment

Carers

References

Ambitious about Autism. Available at: https://www.ambitiousaboutautism.org.uk/understanding-autism/about-autism/stats-and-facts (Accessed 29th February 2016)

Brugha, T, Cooper, SA, McManus, S, Purdon, S, Smith, J, Scott, FJ, Spiers, N and Tyner, F. (2012). Estimating the Prevalence of Autism Spectrum Conditions in Adults: Extending the 2007 Adult Psychiatric Morbidity Survey. The NHS Health and Social Care Information Centre.

HM Government (2009) Autism Act 2009. Available at: http://www.legislation.gov.uk/ukpga/2009/15/pdfs/ukpga_20090015_en.pdf  (Accessed 9th February 2016)

HM Government (2014) Care Act 2014, Available at: http://www.legislation.gov.uk/ukpga/2014/23/contents/enacted  (Accessed 9th February 2016).

HM Government (2014) Children and Families Act 2014. Available at: http://www.legislation.gov.uk/ukpga/2014/6/pdfs/ukpga_20140006_en.pdf  (Accessed 9th February 2016).

HM Government (2014) Think Autism: Fulfilling and Rewarding Lives, the strategy for adults with autism in England: an update. Department of Health, Social Care, Local Government and Care Partnership Directorate.  Available at: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/299866/Autism_Strategy.pdf  (Accessed 9th February 2016).

National Autistic Society. Myths, Facts and Statistics. Available at: http://www.autism.org.uk/About/What-is/Myths-facts-stats [Accessed 29th February 2016].

National Autistic Society. Fixed Period Exclusion in the UK. Available at: http://www.autism.org.uk/about/student-life/exclusion/permanent-england.aspx [Accessed 29th February 2016].

PANSI. People aged 18-64 predicted to have autism spectrum disorder, by age and gender, projected to 2030. Downloaded from: www.pansi.org.uk (Accessed 29th February 2016)

Reading Borough Council (2012). Census 2011 - Summary for Reading.  Available at: http://www.reading.gov.uk/media/1292/Reading-Census-2011-Results/pdf/Reading-Census-2011-Results.pdf (Accessed 29th February 2016).

Redman, S et al. (2009). Don't write me off: Make the system fair for people with autism.  London: The National Autistic Society, p8.

Switch To High Contrast Mode