People with autistic spectrum conditions
This page is part of the Joint Strategic Needs Assessment (JSNA)
Index of information on this page:
- 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
- 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
- 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:
- 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
- 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
• 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.
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
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
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%)
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
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
In a Northumberland Care Trust Survey
- 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
- 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:
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
The Way We Are: Autism in 2012 (National Autistic Society, May
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.
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
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
• increasing awareness and understanding of autism
• developing a clear and consistent pathway for
• improving access to the services and support people need to
live independently within the community
• 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
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.
briefing (SCIE 2010) examines the implications of the
personalisation agenda for people with autistic spectrum
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
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 disabilites 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.
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,
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
Outcomes Frameworks for the NHS, Public Health and Adult Social
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
Mental Capacity Act 2005 includes Deprivation of Liberty
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
• 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
Telephone: 01670 536 400
Email address: Socialcare@northumbria.nhs.uk