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Executive Summary
National Audit Office Report
- Autism is a lifelong developmental disability, sometimes
referred to as Autistic Spectrum Disorder (ASD) or Autistic
Spectrum Condition (ASC). Its causes are not fully understood,
although there is some evidence that genetic factors are involved.
The term ‘spectrum’ is used because, while all people with autism
share three main areas of difficulty (Box 1), their condition
affects them in different ways. Some can live relatively
independently – in some cases without any additional support –
while others require a lifetime of specialist care.
Box 1: The features of autism
The three main areas of difficulty experienced by all people
with autism are:
- Communicating socially, particularly using and understanding
facial expressions, tone of voice and abstract language
- Recognising or understanding other peoples' emotions and
feelings and expressing their own making it more difficult to fit
in socially
- Understanding and predicting others' behaviour, making sense of
abstract ideas and imagining situations outside their immediate
daily routine
Other related features can include: love of routines and rules,
aversion to change and sensory sensitivity (for example a dislike
of loud noises)
Around half of people with autism also have a learning
disability (sometimes known as 'low functioning'
autism) while the rest do not (so-called 'high
functioning' autism which includes Asperger
Syndrome).
Note: Current social care policy is based on a
'social' model of disability, which emphasises the need for
person-centred approaches focusing on individual needs rather than
diagnostic 'labels'. Where our report refers to the terms 'high-'
and 'low-functioning', this is to reflect differences in services
and eligibility criteria or to inform assumptions used in our
financial modelling [Appendix 2] rather than to suggest that people
with autism should be categorised as two distinct groups.
- Owing to variable identification rates and a general lack of
data, it is difficult to quantify with certainty the number of
people with autism. Recent estimates suggest that there are about
half a million people with autism in England, of whom around
400,000 are adults, [Footnote 1] and
that autism is three to four times more common in men than in
women. [Footnote 2] Uncertainty about
the prevalence of autism means that it is also difficult to
estimate its associated costs precisely. A recent study by
researchers at King’s College London estimated that autism costs
the UK economy around £28.2 billion per year (£25.5 billion for
adults, and £2.7 billion for children). Of the £25.5 billion cost
for adults, 59 per cent is accounted for by services, 36 per cent
by lost employment for the individual with autism, and the
remainder by family expenses. [Footnote
3]
- Although the needs of adults with autism vary between
individuals, in England the services they require will usually be
the responsibility of one of four government departments: the
Department of Health, the Department for Children, Schools and
Families, the Department for Work and Pensions, and the Department
for Innovation, Universities and Skills (Figure 1 overleaf).
[Figure 1 ("Main government departments with
responsibilities for young people and adults with autism") is
unavailable in this version of the executive summary]
Individual policy responsibilities of a number of other
departments may also be relevant to people with autism, for example
the Department for Communities and Local Government Supporting
People programme, which delivers housing-related support services
for vulnerable individuals.
- This report examines the range of services for adults with
autism and their carers in England, including health and social
care, education, benefits and employment support. It focuses on
services for adults rather than children because children’s
services are currently more developed than those for adults, and
have also been examined in depth in other recent investigations
such as The Bercow Review. [Footnote
4] There is, however, much evidence that the transition from
children’s to adult services can be difficult for people with
autism and their carers, and hence our study also covers
arrangements for transition planning, which starts formally at age
14.
Main findings
- People with autism may use a very wide range of public
services, as shown in Figure 1. The data available on the numbers
of people with autism using services is limited, so drawing
conclusions on the differential effectiveness of service provision
as a whole, by comparing outcomes for people with autism with
outcomes for people who do not have autism, is difficult.
Nevertheless, our analysis suggests that there are two key areas
where the effectiveness of existing services can be improved:
better strategy and planning, based on good
information and raising levels of knowledge and
awareness of the nature of autism and the potential needs of
autistic people. Addressing these two issues could improve
outcomes for this group by making better use of existing resources.
- There is also scope for better targeted support for
people with high-functioning autism/Asperger Syndrome.
Such people may not be eligible for the learning disability
services available to people with low-functioning autism, as well
as being unable to access other support services unless they have a
physical disability or a mental health problem.
- We explored the possible impacts of providing specialised
health, social care and employment support for adults with
high-functioning autism. Wider implementation of such services
would require additional expenditure, for example an estimated £40
million per year by Primary Care Trusts and Local Authorities to
provide specialised health and social care teams across the whole
of England. Evidence from existing specialised services does
however indicate that they can improve outcomes for service users,
and our model suggests that the costs could over time be outweighed
by overall public expenditure savings.
- A key factor would be the proportion of the local population
with high-functioning autism identified by specialised services and
given appropriate support, for example to live more independently
or to obtain and retain employment. We estimate that if such
services identified and supported around four per cent or more of
the adults with high-functioning autism in their local area, they
could become cost-neutral across public spending as a whole over
time, as well as resulting in additional earnings and reduced
expenses for individuals.
- Increasing the identification rate further could result in
greater financial benefits over time. On a number of key
assumptions, for example regarding housing settings and employment
rates, some of them based on limited data, our model suggests that
a six per cent identification rate could lead to potential savings
of £38 million per year, and an eight per cent rate to savings of
£67 million. Further work is needed to quantify the potential costs
and benefits more precisely, and to explore in more detail the
potential impacts of implementing such services.
Conclusion on Value for Money
- Better outcomes for people across the whole autism spectrum
could be achieved by greater awareness of autism in strategic
planning, and better knowledge amongst those responsible for
assessing and meeting the needs of people with autism. These
improvements, although difficult to quantify, would help to target
resources more effectively to meet the needs of this group.
- Providing specialised support to adults with high-functioning
autism can improve outcomes for this group, including additional
earnings and reduced expenses for the individuals concerned.
Achieving this improvement would potentially require significant
changes to existing service delivery arrangements, with the
creation of new roles and new ways of joint working between
organisations. There would be costs in implementing such services
more widely, but also savings, though the benefits may be realised
by delivery partners elsewhere in the system rather than by the
lead organisation funding the service. Local health and social care
organisations and Jobcentre Plus would therefore need to work
together in developing services, for example through pooled health
and social care budgets and joint commissioning arrangements.
Conclusions and Recommendations
- On the basis of our examination, we recommend that action needs
to be taken to improve outcomes for adults with autism in three
main areas.
a The organisations responsible for supporting people with
autism need better awareness of the number of people with autism,
both to plan and deliver services appropriately, and to measure how
effectively services are meeting the needs of this group.
- Most NHS organisations and Local Authorities lack
robust data on numbers of people with autism in their area, thus
limiting their ability to identify need, plan capacity and
commission appropriate services. Only 18 per cent of Local
Authorities and NHS partners responding to our survey were able to
give precise numbers of adults with low-functioning autism known to
services, while only 12 per cent could do so for the
high-functioning group.
NHS organisations and Local Authorities should
collate existing data from learning disability and mental health
services to identify and record all adults with autism known to
services in their area. Directors of Children’s and Adult
Services should forecast future demand for services by
collating and sharing routine Schools Census data, covering numbers
of pupils with Statements of Special Educational Needs and at
School Action Plus who have autism and are approaching
school-leaving age.
The Department of Health should build on the
results of its planned prevalence work to develop Local Authority
and NHS commissioning guidance, including tools for calculating
expected levels of prevalence. Local organisations should use these
tools to assess where they are at most risk of not identifying
autism or meeting the needs of people with autism and their
carers.
- Managing the transition of young people with autism from
childhood to adult services requires effective planning and joint
working between health, social care, education and employment
organisations. The Special Educational Needs code of practice
requires every child with a Statement of Special Educational Need
to have a transition plan prepared in year nine of compulsory
education. Only 45 per cent of Local Authorities responding to our
survey told us they knew how many children with autism and a
Statement of Special Educational Needs had a completed transition
plan. The Department for Children, Schools and Families has
recently contracted with the Council for Disabled Children and
partners to provide a National Transition Support Team to improve
the experience of disabled young people and their families at
transition.
The National Transition Support Team should use
its local area self-assessment work to identify good practice in
transition planning for young people with autism, as well as to
identify those local areas where this group is at risk of poor
transition. Its advice to the Department should include specific
reference to young people with autism and the improvements needed
locally to support them.
- The Connexions service, which supports young people
with a learning difficulty or disability through transition and
into further education, training and work up to the age of 25, did
not know the training, employment or education status of 31 per
cent of these clients as at December 2008. Only one quarter of
parents surveyed in 2006 felt that transition support was
coordinated, and one in three felt that Connexions’ knowledge of
autism was not adequate.
As part of their new role in providing Connexions services from
2008-09, Local Authorities could provide specific
training in autism to their Connexions personal advisors. The
Department for Children, Schools and Families
should require all Connexions services to provide complete and
comparable data from the Connexions Client Caseload Information
System (CCIS), and use this data to benchmark how well local
services are supporting people with autism up to the age of 25,
including those not in education, employment or training.
- Around 65 percent of Local Authorities and NHS bodies
responding to our survey have difficulty finding appropriate
residential placements and supported housing for adults with autism
within their area. Over 90 per cent were unable to give us figures
for expenditure on out-of-area inpatient services for adults with
autism, and over two thirds were not able to estimate their
expenditure on out-of-area residential care for adults with autism.
While a small number of people with particularly complex needs may
need specialised resources that cannot be provided in-area (for
example forensic mental health services), for others appropriate
support could often be provided locally at lower cost.
The Department of Health should draw up good
practice guidelines for commissioning support for adults with
autism out-of-area, and encourage Local
Authorities, Primary Care Trusts and NHS Mental
Health Trusts to review the appropriateness and
cost-effectiveness of their long-term out-of-area residential and
inpatient placements of people with autism. Strategic
Health Authorities should formulate strategic plans for
managing out-of-area provision commissioned across their regions,
including planning to develop the provider market, and drawing on
pooled information on the costs and outcomes of residential
services across geographical and sectoral boundaries.
- The current reconfiguration of health and social care
provision with greater emphasis on personalisation presents a good
opportunity to help people with autism obtain more appropriate
services. There are also risks to be managed, however, as people
with autism may need support to manage personal finances and
relationships with providers.
As part of its forthcoming autism strategy, the
Department of Health should provide guidance to
Local Authorities on: appropriate quality control of individual
services that people with autism may use; supporting people with
autism and their carers to manage their financial and contractual
arrangements, and providing people with autism and their carers
with sufficient information to make informed choices about
available services.
b Service providers need a better understanding of what
autism is and of the range of potential needs of people with
autism, to enable them to meet those needs more effectively with
better targeted, more appropriate services.
- Only 29 per cent of Local Authorities responding to our
survey said training for staff assessing eligibility for care
services covered high-functioning autism. Eighty per cent of GPs
feel they need additional guidance and training to manage patients
with autism more effectively.
The Department of Health should provide
guidance to Primary Care Trusts on how to improve knowledge and
awareness of autism amongst GPs and other primary care
practitioners. Local Authorities should provide specific training
in autism to all staff carrying out community care assessments.
Where staff have not yet received such training, Local Authorities
should identify appropriate local partners (such as third-sector
organisations) with autism expertise to assist with the assessment
process.
- People with autism and their carers report that
Department for Work and Pensions employment support services do not
always meet their needs. Although training for Disability
Employment Advisors now includes autism-specific content, the
initial training received by around 200 of the 500 Disability
Employment Advisors currently in post did not cover
autism.
The Department for Work and Pensions should
provide awareness training in autism for Disability Employment
Advisors whose initial training took place prior to November 2005,
including advice on how to communicate effectively with people with
autism and their carers to identify their needs, and work
effectively with specialist autism organisations to meet them.
In developing the Government’s autism strategy, the
Department of Health and Department for Work and
Pensions should work together to appraise the costs and
benefits of different models for providing specialised employment
support appropriate to the needs of adults with autism. They should
identify how these models could be integrated within local
structures developed to deliver the Valuing People Now strategy for
people with learning disabilities [Footnote 5] and the forthcoming
cross-government Public Service Agreement Target (PSA) 16 [Footnote 6] employment strategy.
- People with autism can have valuable skills to offer
employers, but employment rates for people with autism are low,
with many finding lack of understanding of autism amongst employers
a significant barrier to work. Recent estimates suggest that only
15 per cent of adults with autism are in full-time
employment. [Footnote 7]
Yet with appropriate awareness training and support, a
number of employers have successfully integrated people with autism
into their workforce.
The Department for Work and Pensions should
work at a national level with employer organisations such as
Employers’ Forum on Disability to raise awareness amongst employers
of the potential benefits of employing people with autism, and what
adjustments might be needed to support them.
- Robust routine data on retention and achievement rates
for students with autism has been limited to date, but evidence
from Disability Support Officers suggests that, with appropriately
targeted support, they can complete their courses with good
results. There is, however, some lack of
understanding amongst university disability advisors and students
as to whether Disabled Students’ Allowances can be used to fund the
social mentoring needed for students with autism.
The Department for Innovation, Universities and
Skills should make clear to Disabled Students’ Allowances
assessors and higher education disability advisors that a support
package for a student with autism can legitimately include social
mentoring as well as course-related support.
c Better-targeted specialised provision for adults with
high-functioning autism/Asperger Syndrome, both diagnostic services
and post-diagnostic support, has the potential to lead to improved
quality of life for people with autism and their carers, as well as
improving the cost-effectiveness of current service
provision.
- Adults with high-functioning autism and Asperger
Syndrome often struggle to obtain a diagnosis, and owing to
eligibility criteria or lack of provision, frequently fail to
access either learning disability or mental health services. Only
10 per cent of Local Authorities and NHS bodies responding to our
survey commission ongoing support for high-functioning autism from
specialist teams, yet the ‘preventative’ support which they provide
could enable more adults with autism to live relatively
independently in the community.
The Department of Health should build on our
modelling to show Local Authorities and NHS organisations the costs
and benefits of specialised diagnostic and support services for
high-functioning autism. Its forthcoming autism strategy should set
out good-practice examples of how to deliver such support, with
particular reference to reducing social isolation and mental health
difficulties, developing independent living skills and
relationships, providing appropriate housing, and offering
information and support for carers. The strategy should indicate
the sort of outcomes which Local Authorities and NHS bodies should
be aiming to achieve, and how performance in supporting adults with
autism should be assessed. It should also emphasise the need for
local bodies to co-ordinate the funding and development of such
services, for example through pooled budgets and
joint commissioning.
Footnotes
1 Knapp et al., The Economic Consequences of Autism in the UK
(Foundation for People with Learning Disabilities, 2007).
2 Baird, G, Simonoff, E, Pickles, A, et al., ‘Prevalence of
disorders of the autism spectrum in a population cohort of children
in South Thames: the Special Needs and Autism Project (SNAP)’ in
The Lancet 368 (2006), 210-215.
3 Knapp et al., The Economic Consequences of Autism in the
UK.
4 Department for Children, Schools and Families, The Bercow
Report: A Review of Services for Children and Young People (0–19)
with Speech, Language and Communication Needs (July 2008).
5
Department of Health, Valuing people now: a new three-year
strategy for people with learning disabilities (19 January
2009).
6
Cabinet Office, PSA Delivery Agreement 16: Increase the
proportion of socially excluded adults in settled accommodation and
employment, education or training (October 2007).
7
National Autistic Society, Think Differently, Act Positively –
Public Perceptions of Autism (2008), p. 19.