Three developments in the autism field
should put people with the condition at the centre of policy and
practice. Bob Hudson assesses a National Audit Office report, a
Department of Health consultation and the Autism Act 2009, passed
earlier this month
The Research
The National Audit Office (NAO) report, Supporting People with
Autism through Adulthood, examined the effectiveness of support
services to adults with autism and their carers. The study,
published in June, assessed the range of services that might be
needed by people with autism, including health and social care,
education, benefits and employment. A multi-dimensional approach to
data-gathering was used, with most of the fieldwork being
undertaken in late 2008 and early 2009. This included:
● A survey of local authorities requesting data from both
themselves and their NHS partners on identified need, strategy and
planning, expenditure and service provision for people with
autism.
● An online survey of 1,000 GPs in England covering the numbers
of patients presenting with symptoms of autism; referral pathways;
and the type of support available to them.
● A survey of disability support officers in further and higher
education institutions in England, covering their experiences of
supporting students with autism.
● Telephone interviews with third sector organisations in the UK
that provide services for adults with autism.
● Twelve focus groups exploring the views and experiences of
adults with autism and their carers, in partnership with the
National Autistic Society.
● Interviews with government officials to establish the position
on policy and strategy for people with autism.
Findings
The report found that available data covering the number of
people with autism using services was limited, so it was difficult
to draw conclusions. It suggested two key areas where service
effectiveness could be improved.
● Better strategy and planning. This would be based on
good information and raising levels of knowledge and awareness of
the nature of autism and the potential needs of people with the
condition. Achieving this could require significant changes to
existing service delivery arrangements, with the creation of new
roles and new ways of joint working between organisations.
● Better targeted support for people with high-functioning
autism/Asperger's syndrome. Such people may not be eligible for
the learning disability services available to people with
low-functioning autism, and may also be unable to access other
support services unless they have a physical disability or a mental
health problem.
The report recommended action to improve outcomes for adults
with autism in three main areas.
● Organisations responsible for supporting people with autism
need better awareness of the number of people with the condition in
order to plan services, and to measure how effectively services are
meeting needs.
● 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 targeted
services.
● Better targeted specialised provision for adults with
high-functioning autism/Asperger's syndrome, both diagnostic
services and post-diagnostic support. This could lead to improved
quality of life for people with autism and their carers and improve
the cost-effectiveness of service provision.
Analysis
The NAO report coincides with several other major developments
in the field of autism, notably the publication of good practice
guidelines by the Department of Health in April, and the DH's
consultation, A Better Future: A consultation on a future strategy
for adults with autistic spectrum conditions.
The latter closed in September 2009 and will inform the DH's
final strategy for adults with autism, due to be published next
spring.
Finally, the Autism Act, which has received royal assent, puts
the government's strategy on a statutory footing.
The best way to make sense of the NAO study is to place it
within this wider context. Looking across all these publications
and initiatives, recurring themes emerge which are central to
improved policy and practice:
● Professional and public misunderstanding: A key theme
of A Better Future was social inclusion with an aspiration to
ensure "all adults with autistic spectrum conditions are treated as
equal citizens, and are fully and appropriately supported to fulfil
their potential". However, understanding among the wider population
is low, leading to intolerance, discrimination and isolation. More
worryingly, professionals themselves were said to show limited
understanding.
● Poor policy focus and inadequate leadership: The DH's
consultation paper raised concerns over the lack in many areas of a
local lead individual or team to take responsibility for ensuring
that needs assessments are carried out, and for developing services
and support. This can result in people with an autistic spectrum
condition falling into the gap between mental health and learning
disability services. The NAO survey reveals that most local
organisations do not have a specific commissioning strategy for
adults with autism.
● Insufficient access to services and support: This was
probably the most documented concern, and covered most areas of
public policy. There is little statutory guidance that specifically
relates to the provision of services for people with autism, but
many general policies can apply. However, the government has
recognised that some people who need services fall through the gaps
created by traditional service boundaries.
● Poor experiences of transition to young adulthood: The
DH consultation paper noted "substantial concerns" about the
transition from children's to adult services, with a greater need
for person-centred planning that avoids "last-minute" transition.
The issue also figured prominently in the NAO report, where
incredulity was expressed at the failure to plan ahead.
● Failure to personalise support: The DH consultation
paper expressed concern that many adults with an autistic spectrum
condition do not have holistic support plans that meet their unique
needs. There were also concerns that assessment processes for the
allocation of personal budgets could be too inflexible to reflect
needs accurately, and that access to advocacy could be difficult.
The NAO was enthusiastic about the potential of personal budgets
for people with autistic spectrum conditions but said it would need
careful management, including advocacy, brokerage and mentoring
services.
● Inadequate data collecting and forward planning: There
is little agreement about the incidence of autism nationally or in
localities - a reflection of the fact that there is no specific
routine data collection across the country (by local authorities or
the NHS) on or about people with autistic spectrum conditions.
The way
forward
The government vision set out in the Better Future consultation
paper identifies several key themes: social inclusion, health,
choice and control, awareness raising and training, and access to
training and employment.
It is unwise to expect too much in the short term. The
consultation paper deliberately avoided setting out recommendations
about what needs to change and how those changes could be
achieved.
In the meantime there is the Autism Act which gained royal
assent on 12 November and commits the UK government to publishing a
national strategy for autistic adults in England by 1 April 2010.
This started off as a private member's bill, drafted by the
National Autistic Society and sponsored by Conservative MP Cheryl
Gillan, but in effect became a government bill when ministers
decided to amend it to incorporate its forthcoming strategy.
The Act requires government to produce guidance for local
authorities and the NHS covering the provision of diagnostic
services, the identification of adults with autism, assessments of
need, service planning, transition planning for young people, staff
training and leadership.
The strategy will have an impact assessment of costs, but the
danger is that it will be delayed and then overtaken by the general
election and the possible squeeze on public spending
afterwards.
For the first time the needs of people with autism are at the
centre of the policy and practice stage, but it is worrying that
this is happening at such a difficult time in the political and
economic cycle.
Bob Hudson is a professor at the School of Applied Social
Sciences, University of Durham
Resources
Supporting People
with Autism through Adulthood, National Audit Office, 2009
A Better Future: A
consultation on a future strategy for adults with autistic spectrum
conditions, DH, 2009
Good practice advice for PCT
and LA commissioners, DH, 2009
Autism Bill becomes
England's first law for specific disability, Community
Care
Practice implications; challenge to services
Employers: To ensure adults with autism are
treated as equal citizens, and fully supported to fulfil their
potential - one of the key objectives of the Department of Health's
autism strategy - managers need to ensure staff understand the
issues they are facing.
Service providers: Many people with autism fall
through the gaps created by traditional service boundaries, such as
mental health and learning disability. Providers must ensure
services are flexible enough to meet the unique needs of each
individual.
Local authorities: The Autism Act 2009 may lead
to requirements for councils to create a register of autistic
children in their area, while councils and NHS organisations must
record the number of adults with autism.
Senior managers: An individual or team in each
organisation should take responsibility for developing autism
services and ensuring that needs assessments are carried out.
This article is published in the 26 November issue of
Community Care magazine under the heading Autism support in
adulthood