Northumberland County Council > Health & social care > JSNA > People with Autistic Spectrum

People with Autistic Spectrum conditions

also known as: Autism, Autistic spectrum conditions.

Autistic spectrum conditions (ASC) are often associated with learning disability. However, on some estimates as many as three quarters of all people with an ASC do not have a learning disability.

  • Autistic spectrum conditions (ASC) are often associated with learning disability. However, on some estimates as many as three quarters of all people with an ASC do not have a learning disability.
  • Autism is a lifelong developmental disorder which affects the way people interact with the world around them. The three main areas of difficulty which all people with ASC share relate to 'social communication', 'social interaction' and 'social imagination'. Some people with ASC can live relatively independently, while others require a lifetime of specialist care.
  • There is a tendency to think of autism as a condition affecting only children, and it can be under-diagnosed in older people, as suggested in research by the National Autistic Society (NAS) charity, published in Getting on? Growing Older with Autism  (2013). Improvements to the diagnostic pathway for adults should take account of the needs of older people as well as those of working age adults.  Further research is required to improve understanding on how the condition develops in older age and the most appropriate forms of support required for older people with autism. 

What we know:

National

  • 400,000 people are estimated to have autistic spectrum conditions in the UK.  Of these 160,000 are estimated to have Asperger Syndrome.  70,000 are estimated to have a severe learning disability.
  • Adults with a more severe learning disability have a greater likelihood of having autism according to a report published in 2012 by the NHS Information Centre.  The report combines data from the Adult Psychiatric Morbidity Survey (APMS) 2007 with findings from a more recent study based on a sample of people with learning disabilities living in private households and communal care establishments.

The report estimates that the prevalence of autism:

  • Is 1 per cent in the general population
  • Is approximately 35 per cent among adults with severe learning disabilities living in private households
  • Is approximately 31 per cent among adults with mild or severe learning disabilities living in communal care establishments
  • Increases with greater severity of learning disability or lower verbal IQ

Whilst the study comprised a relatively small sample with limited geographical coverage (Leicestershire, Lambeth and Sheffield) and did not include the institutional population, it did include two distinct populations (people in communal care establishments and people with learning disabilities), which were not covered by the APMS 2007.

  • Information on the number and nature of autistic spectrum conditions is highlighted by specialist organisations as a serious issue in its own right.
  • A long-standing problem has been people with autism being refused support because they do not fit easily into mental health or learning disability services.
  • To improve access to and responsiveness of services, there needs to be:

- improved diagnostic services and clear pathways to care and support

- better access to mental health services where required, and the provision of adjustments to meet  individual needs

- greater awareness of autism among healthcare and social care professionals.

According to the NAS 'I Exist report' (2008), only 15% of adults with autism are in full-time paid employment and 49% of adults with autism still live at home with their parents. Of those adults who live on their own, 44% say that their families provide most of their support.

Northumberland (2012 data)

Based on national prevalence rates, it would be expected that approximately 3,120 Northumberland residents would have an ASD,  2,770 of whom would be aged 18 and over.

From local authority data, approximately 400 adults (over 18 years) are known to services (250 in Community Learning Disability teams and 150 known to Mental Health teams). This suggests that there are many more people living in the community with ASD who are not receiving formal help.

The number of adults in Northumberland who have a learning disability and ASD known to social care is 250.  149 of these people have a formal diagnosis of ASD, 105 of whom receive services in addition to a care manager.  Out of the 101 people who have suspected ASD but no formal diagnosis, only 19 have no other social care services other than a care manager.  The majority require additional services.

The number of children and young people (aged 16-20 years) in Northumberland with ASD completing the transition process to adult services is thought to be about 105.  The number going through transition is likely to increase in future years as the effect of consistent diagnostic guidelines is felt.

What people have told us:

People receiving social care services

People receiving social care services in Northumberland were surveyed as part of the Adult Social Care User Survey in England 2010-11. Overall views were very positive: overall satisfaction with the care and support people were receiving was 93% - either extremely (31%) satisfied, very satisfied (32%) or quite (30%) satisfied.

This is reflected in the view that some key aspects of quality of life were mostly in place:

  • People described their personal care positively: 53% feeling able to present themselves in the way that they liked; 41% feeling adequately clean and presentable.
  • 64% of people felt they got all the food and drink they liked when they wanted it; 30% felt their food and drink adequate.
  • 60% felt their home was as clean and comfortable as they wanted; 35% felt it was adequate.
  • 62% of people felt as safe as they wanted; 30% felt adequately safe.

However, views on overall quality of life suggested that people would like to see improvement: 47% of people felt extremely, very or quite satisfied. Possible issues include:

  • 72% of people felt they had as much control as they wanted over daily life and 47% felt they had adequate control.
  • 39% felt they had as much social contact as they would like, and 36% had adequate social contact.
  • 61% of people thought information and advice very easy or fairly easy to find, 20% found it fairly difficult or very difficult to find.
  • Perhaps understandably in a county such as Northumberland, satisfaction with getting around outside the home was an issue: with 30% of people feeling able to get to all the places in their area that they want; 27% acknowledging that at times this was a challenge; 24% unable to get to the places they want and 19% unable to leave their home.

 

People with autism and family carers representative within the Northumberland Autism Strategy Development Group (ASDG) and the Learning Disability Partnership Board and User Forum have contributed to a Charter and an outcomes framework, which outline shared person-centred outcomes and issues that are important to people with autism.  

 

In a  Northumberland Care Trust Survey (2009)

  • Families indicated that there should be more specialist services offered locally
  • Within Further Education, people with autism access North Tyneside College, Newcastle College and Sunderland College
  • Local colleges in Northumberland have no specialist services available for people with autism
  • Some services established by care managers for individuals have been successful
  • Families struggle to see where services for people with autism fit into mental health or learning disability functions, and in some cases fit into neither.

Policy and Research:

Winterbourne View Hospital Final Report (DoH, Dec 2012)

The Government published a final report following investigations into the institutional abuse at an independent hospital for people with learning disabilities, autism, mental health conditions and challenging behaviour.  The report includes a programme of action to transform services so that vulnerable people no longer live inappropriately in hospitals and are cared for in their community near to family and friends in line with best practice.  

Progress in Implementing the 2010 Adult Autism Strategy (National Audit Office, July 2012). This memorandum outlines the progress made in the two years following publication of the Strategy for adults with autism in England, within which time 24 of the 56 commitments in the Strategy had been implemented.  Less progress was being made with improving access to social care assessments, personal budgets and diagnostic services.

The Way We Are: Autism in 2012 (National Autistic Society, May 2012)

To mark its 50th birthday, The National Autistic Society commissioned this survey into autism, in order to show what life is like in the UK for people affected by the condition. A total of 2,938 people with autism
completed the survey.

Autism Spectrum Disorder in Adults  (National Institute for Health and Clinical Excellence, April 2012).

Draft NICE Guidelines for the recognition, referral, diagnosis and management of adults on the autism spectrum.

No Health Without Mental Health: a cross government mental health outcomes strategy for people of all ages (HM Government  2011) sets out six shared objectives to improve the mental health and well-being of the nation, and to improve outcomes for people with mental health problems through high quality services. For people with learning disabilities and/or autism, this means including them in mainstream mental health services where necessary and providing adjustments to meet their individual needs. This relies on greater awareness and understanding of autism among health and social care professionals.

Implementing "Fulfilling and rewarding lives" (DoH, 2010)

This document gives statutory guidance on the implementation of the national autism strategy, focusing on local leadership, increasing understanding of autism and local planning, training staff, strengthening diagnosis and assessment, and improving transitions from childhood to adulthood.

 

Fulfilling and rewarding lives: the strategy for adults with autism in England (DoH, 2010)

This first national autism strategy was developed by the last government and included: a new National Autism Programme Board to lead change in public services; a programme to develop training with health and social care professional bodies) and a number of key actions and recommendations for central Government, local authorities, the NHS and Jobcentre Plus, focusing on five key areas:
• increasing awareness and understanding of autism
• developing a clear and consistent pathway for diagnosis
• improving access to the services and support people need to live independently within the community
• employment
• enabling local partners to develop relevant services to meet identified needs and priorities.

Following on from the strategy, the Government published the first year delivery plan: Towards 'Fulfilling and rewarding lives' (DoH 2010), which set out the governance structure and the actions, with timescales and responsibilities.

Supporting people with autism through adulthood,Comptroller and Auditor General,  Session 2008-09, HC 556, National Audit Office, 5 June 2009. Recommendations from this report were incorporated into the adult autism strategy.

This Personalisation briefing (SCIE 2010) examines the implications of the personalisation agenda for people with autistic spectrum conditions.

Think differently - act positively: new report on public attitudes to autism (National Autistic Society, 2010)

A report into public attitudes to autism based on a survey of over 2,000 adults from across the UK showing that there is a lack of understanding about what it really means to live with the condition, which has a damaging impact on people affected by autism, who often experience discrimination, intolerance and isolation.

Equality Act 2010

The Act consolidates all the anti-discrimination law in Great Britain to ensure equal treatment in access to employment as well as private and public services, regardless of the protected characteristics of age, disability, gender reassignment, marriage and civil partnership, race, religion or belief, sex, and sexual orientation, with special provisions for pregnant women and transsexual people. Employers and service providers are under a duty to make reasonable adjustments to their workplaces to overcome barriers experienced by disabled people, including people with autism, learning disabilities and mental health difficulties.  In addition,  NHS bodies meet their duties regarding reducing health inequalities under the Health and Social Care Act.   

Click here to find out what we are doing to promote equality in Northumberland and how we are meeting our new duties under the Equality Act 2010.

 

Autism Act 2009

The Act made two key provisions, which resulted in the adult autism strategy and the statutory guidance for local authorities and local health bodies on supporting the needs of adults with autism.

“I exist: the message from adults with autism in England” (National Autistic Society, 2008)

Other relevant Health and Social Care policy and legislation:

  • Health and Social Care Act 2012
  • No Health Without Mental Health: a cross government mental health outcomes strategy for people of all ages (HM Government 2011).
  • Outcomes Frameworks for the NHS, Public Health and Adult Social Care.
  • A vision for Adult Social Care: Capable communities and Active Citizens (DH, 2010)
  • Commissioning for personalisation: a framework for local authority commissioners (DH, 2010)
  • Recognised, valued and supported: next steps for the carers’ strategy (HM Government, 2010)
  • Health and Social Care Act 2008 
  • Mental Health Act 2007 amends the Mental Health Act 1983 
  • Mental Capacity Act 2005 includes Deprivation of Liberty Safeguards.

Our plans for the future:

The Joint Social Care and Health Commissioning Plan 2012-15: Learning Disability Services and

the Joint Social Care and Health Commissioning Plan 2012- 15: Mental Health Services for Working Age adults  (Northumberland Care Trust, Northumberland County Council, and Northumberland Commissioning Group 2012) incorporate the needs of people with autism spectrum conditions and within the Learning Disability commissioning plan there is a specific goal to improve the quality, availability and responsiveness of services for people with autism. This includes the following actions:

• Introducing an Autism Diagnosis Service .
• Engaging with current out-of-county providers of large-scale services for people with autism to offer moves into individual tenancies in preferred localities.
• Continuing to work with the North East Autism Consortium to implement the National Autism Strategy in Northumberland.
• Continuing to commission work with colleges in Northumberland to provide educational opportunities specifically tailored to people with autism.

The North East Autism Consortium is supported by all 12 authorities in the area from Northumberland to Tees and involves health and social care commissioners and providers together with family members with support from the National Autistic Society.  

The Northumberland Autism Strategy Development Group (ASDG), which feeds into the North East Autism Consortium, is responsible for driving forward the local priorities for action, which are in line with the national adult autism strategy.  This multi-agency/stakeholder group coordinates a long term action plan, which prioritises work on the diagnostic pathway,  transitions between children and adults' services and an autism training strategy for health and social care professionals.  The group has also linked with other agencies such as the police, employment agencies and education to raise awareness of autism.

Contact Adult Social Care