The Autism Strategy: implications for

people with autism and for service

development
Nick Walsh and Ian Hall

Nick Walsh and Ian Hall are Abstract

based at East London NHS Purpose – The aim of this article is to critically review the Autism Strategy and to discuss its implications.
Foundation Trust, Design/methodology/approach – This is a summary and critical review of the Autism Strategy and its
London, UK. implementation. This includes discussion of the political context, reactions to the strategy by
stakeholders, economic considerations, equity, integration across health and social care and the role of
diagnostic services and specialist interventions.
Findings – The Autism Strategy Fulfilling and Rewarding Lives was published in 2010. It aimed to
increase awareness of autism, establish clear pathways for diagnosis and needs assessment, promote
independent living and access to work, and help the development of local services. It focuses on
intended outcomes, is not prescriptive about how those aims are achieved, and relies on existing
legislation such as the Disability Discrimination Act. The emphasis on accessing mainstream services
may limit the development of appropriate specialist services, especially in the current economic climate.
Specialist interventions that may follow diagnosis are not prioritised, even though the economic case for
them has been well made by the Audit Commission. Although the Department of Health has produced
‘‘outcomes and ambitions’’ to measure implementation of the Strategy, local authorities are not required
to measure themselves against these targets or publish their results. However, organisations such as the
National Autistic Society have already developed training materials to help with implementation, and the
NICE guidelines for adults with autism due in 2012 may help the development of better services.
Originality/value – This article provides new insights into the implications of the strategy for service
users, service managers and healthcare professionals. Although the strategy applies to England only,
the principles are of interest to stakeholders in other countries.
Keywords Autism, Health policy, Service development, Health services, United Kingdom
Paper type General review

Introduction
The Autism Act 2009 was the first piece of legislation which addressed the needs of people
with a specific condition. The Act committed the government to ensuring that the needs of
adults with autism (autistic spectrum disorders) were specifically addressed across public
services. Fulfilling and Rewarding Lives (Department of Health, 2010a), was the then Labour
government’s response to the 2009 Act and laid out a three year strategy to begin the process
of changing public services. The statutory implementation guidance (Department of Health,
2010e) was published by the subsequent Coalition government. This places
greater emphasis upon local arrangements, third sector organisations, the ‘‘Big Society’’
(Conservative Party, 2010) and refers to the planned reorganisation of the NHS in England
(Department of Health, 2010c). In this article we will review the autism strategy and consider
its implications for people with autism as well as for health and social care services in England.

The Autism Strategy

All adults with autism are able to live fulfilling and rewarding lives within a society that accepts and
understands them. They can get a diagnosis and access support if they need it, and they can

DOI 10.1108/20441281211227166 VOL. 6 NO. 3 2012, pp. 113-120, Q Emerald Group Publishing Limited, ISSN 2044-1282 j ADVANCES IN MENTAL HEALTH AND INTELLECTUAL DISABILITIES j PAGE 113
 depend on mainstream public services to treat them fairly as individuals, helping them make the
most of their talents.

This is the stated aim of Fulfilling and Rewarding Lives, the government’s Autism Strategy,
developed from the Autism Act 2009. The statutory implementation guidance specifically
relates to health and social care in England and is therefore narrower in focus than the
strategy itself, which has implications for the criminal justice system and the Department of
Work and Pensions, for example.
As well as having broad aims, the strategy focuses on intended outcomes over the three year
period to 2013. The government is explicit about seeking to transform the provision of public
services through an agenda of ‘‘personalisation’’ and work choice, underpinned by local
commissioning. This is expected to accompany a cultural shift in society so that people with
autism have equal opportunity of education and employment support, are able to choose where
they live and to participate in social networks, have their health needs met appropriately and have
access to a social care needs assessment, can live free from discrimination in a society which
respects and understands difference and where they can be supported to live independent lives.
The specific aims of the strategy relate to:
B increasing awareness of autism amongst professionals;
B establishing clear, consistent pathways for diagnosis in all areas;
B enabling access to a personalised needs assessment;
B improving access to services needed to promote independent living;
B helping adults with autism into work; and
B assisting local organisations to plan and develop services.
Crucially, the intention is to produce the desired outcomes by implementing existing policies
more effectively, without new investment, and by adapting mainstream services, as required by
the Equality Act (HMG, 2010), which superseded the Disability Discrimination Act (HMG, 1995).
The first stated aim, to increase awareness and understanding of autism, is expected to
reduce barriers to care experienced by adults with autism, as well as increasing referral for
diagnosis. The strategy recommends that autism awareness training is incorporated into
general equality and diversity training across the public sector, and thus reflects the
requirements of the Equality Act. Emphasis is placed on understanding how autism affects
people and how staff can respond appropriately and make reasonable adjustments to the
service they offer. In health and social care, specialist training is recommended and
organisations are expected to prioritise those people who are most likely to come into
contact with adults with autism. Specifically, autism awareness should be essential training
for staff conducting community care needs assessments, or for clinicians whose role may
impact on access to services, such as GPs referring for diagnosis.
The strategy highlights the difficulties currently faced by adults with autism in obtaining a
diagnosis, recognising the work that has been done in children’s services to improve early
diagnosis and support. One particular intention of developing clear diagnostic pathways is to
enable access to community care assessments and carers’ assessments (Box 1). The
statutory guidance reinforces that the duty to provide such assessments under the National
Health Service (NHS) and Community Care Act (HMG, 1990) applies to autism. The statutory
guidance also makes it clear that assessments cannot be denied on the grounds of IQ. As part
of this process of improving early diagnosis and support, National Institute for Health and
Clinical Excellence (NICE) guidelines for adults with autism are due to be published in 2012.
Local Authorities and NHS bodies are expected to provide relevant information around autism
and to signpost people to organisations which may be able to provide non-statutory support,
such as charities. The strategy states that although there is no expectation that each area will
have a diagnostic service, one should be easily accessible in each area. However, it is
acknowledged that not all people want a diagnostic assessment and that adults are entitled to
a needs assessment without a diagnosis of autism. Assessment and diagnosis is considered
further elsewhere in this issue (Carpenter, 2012).

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 Box 1. Needs assessment process
NHS organisation making a diagnosis of autism informs Local Authority, with consent.
Healthcare professionals inform patient of right to community care assessment and carers’
assessment.
Local Authority Social Services contacts person and informs them of their right to community care
assessment and carers’ assessment.

In terms of supporting independent living, the strategy heavily relies upon existing duties
under the Equality Act. The eligibility of adults with autism for personal budgets is reiterated
and greater personalisation of services is emphasised as a way of achieving outcomes.
‘‘Personalisation’’ refers to giving people choice about the way social care is provided to
them and includes use of personal budgets and a greater emphasis on early intervention
and prevention (Department of Health, 2010d). The strategy also refers to work already
underway to improve transition planning for young people.
A further chapter deals with increasing employment rates among adults with autism as a way
of promoting social inclusion and reducing poverty. This relies upon expanding and
adapting existing programmes for disabled people, as well as training for Job Centre Plus
staff.
The final chapter focuses on ‘‘enabling local partners to develop relevant services for adults
with autism to meet identified needs and priorities’’. To do this, data will be made available on
the prevalence of adults with autism in order to estimate levels of unmet need. Adult Social
Services departments will be expected to appoint a Joint Commissioner/Senior Manager
with responsibility for autism, as specified in Department of Health guidelines. The statutory
guidance states that a ‘‘lead professional’’ should be appointed in each Local Authority to
develop diagnostic and assessment services for adults with autism. However, the strategy
does not guarantee a right to services which in fact depends on existing eligibility fair access
to care services (FACS) criteria. The statutory guidance recommends that Local Authorities
and NHS bodies develop local commissioning plans which are reviewed annually, and
suggests that this work may be undertaken by planned health and wellbeing boards.
In planning and delivering services, organisations have a duty to take into account the views
of adults with autism and their carers.

Initial reaction
The Autism Strategy was broadly welcomed by members of the government’s External
Reference Group that advised on the strategy’s development, and which included, for
example, the National Autistic Society (NAS) and the Disabilities Trust. The main concern
raised by the Disabilities Trust was the lack of new investment accompanying the strategy
(The Disabilities Trust, 2011). However, the NAS highlighted the £500,000 committed by the
Department of Health to develop training for health and social care professionals (NAS,
2010). Dimensions, the biggest provider of support for adults with autism in England and
Wales, criticised the lack of provision of specialist services given the current gaps in
services (Communitycare.co.uk, 2010). Concern was also expressed that while the strategy
promotes innovation and joint working, it is not clear that the guidance itself is mandatory
(Learning Disability Today, 2011).

Critique
Equity
While few would deny that adults with autism face significant difficulties in accessing
mainstream services or in obtaining a diagnosis, there are many other groups of people who
are similarly disadvantaged or excluded from society. While there is a strategy for mental
health, there is no ‘‘Schizophrenia Act’’, for example. The question is made more pertinent by
the current financial situation in the public sector. Local Authorities and health services are

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 already facing difficulties in balancing the needs of diverse groups, for example patients with
cancer versus patients who require bariatric surgery, within reduced budgets. The Autism Act
places duties on services which, whilst specified in existing legislation or policies, may
demand additional resources from already stretched budgets. There is a possibility that other
groups, without such a powerful lobby, may lose out. This also runs contrary to the stated aim
of NHS reform (Department of Health, 2010a): to develop local commissioning and to liberate
health and social care services from central government control.

Integration
The strategy explicitly states the government’s intention to implement existing policies more
effectively and by adapting mainstream services, without new investment. While a move
to integrate people with autism into mainstream services may be laudable, there are
drawbacks to focusing on this approach exclusively. The strategy’s reliance upon existing
legislation, such as the Equality Act, may be insufficient to ensure that services are provided
for people with autism, given that the emphasis is placed on needs assessment and
consideration of the views of service users and carers, rather than on providing specific
services. Equally, the strategy states that it does not guarantee a right to services. This
depends upon existing (FACS) eligibility criteria (Box 2), which are becoming more strictly
applied, although this varies across different Local Authorities.
With regard to adults with autism, some impairments may be subtle and so appropriately
trained staff are needed to make these assessments. While this issue is addressed by the
Autism Strategy, there is no mechanism to ensure that this training is provided. The whole
strategy is therefore weakened if Local Authorities fail to meet this objective.

Diagnosis and specialist interventions

The most specific direction in the strategy is that each area should have access to a diagnostic
service. However, no further guidance is given as to who is expected to provide this service or
in what form. The strategy recommends that a lead professional is appointed to work with the
local specialised commissioning group, in order to develop local diagnostic and assessment
services. While a range of professionals might be involved in diagnosing autism, it seems
likely that most such services will be commissioned from local mental health services.
However, although there is an identified need for ‘‘post diagnostic support’’, there is a relative
lack of emphasis on specialist health services for people with autism in the strategy, including
mental health services. This would suggest that specialist health interventions such as
psychology or speech and language therapy may be hard to access for people with autism.

Implementation
The government’s recent strategy for mental health, No Health Without Mental Health
(Department of Health, 2011b), makes little reference to autism or intellectual disabilities,
instead referring back to the Autism Strategy. This reflects a lack of integration within the
Department of Health, and may hamper the ability of people with autism to access generic
mental health services.
In general the approach taken by the Autism Strategy is in stark contrast to the much more
directive approach in the Mental Health Policy Implementation Guide (Department of Health,
2001) which introduced functional teams such as assertive outreach and crisis teams into all
mental health services in England. This reflects a broader trend within recent government
policy to move from directive guidance towards outcome-focused guidance. Within health
services, this has provoked significant debate amongst clinicians and managers.
Regardless of the merits or otherwise of this shift, there is concern that outcomes may be
more difficult to measure than process-driven targets, such as the four hour Emergency
Department (A&E) waiting time or the level of activity of a crisis team. Coupled with the fact
that historically, health and social care services have been poor at measuring outcomes, this
leaves outcome-focused guidance open to the accusation that it is weaker than more
directive guidance.

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 Box 2. FACS eligibility criteria
FACS criteria are applied by Local Authorities when assessing an individual’s need for social care.
Local Authorities’ obligations to provide care are set out in various acts of parliament. Department of
Health guidance sets four bands of eligible need – critical, substantial, moderate and low. Councils
have to ensure that eligibility criteria for their services are applied fairly. In addition to the FACS
criteria, they should also consider whether an individual’s needs prevent them from achieving
certain outcomes such as exercising choice and achieving health and well-being, when deciding
whether to provide social care (Department of Health, 2010d).

Towards ‘‘Fulfilling and Rewarding Lives,’’ The First Year Delivery Plan for Adults with Autism
in England (Department of Health, 2010e), sets out how the strategy is being implemented
along with milestones for the following year. However, in relation to health services it is
difficult to see how outcomes will be measured. This partly reflects the lack of specific
direction in the strategy itself, although the Department of Health says it will publish
guidance indicating how mainstream services can make reasonable adjustments for adults
with autism. For Local Authorities, while the strategy clearly places duties on them, outcomes
for autism are currently not included in their Key Performance Indicators (Department of
Communities and Local Government, 2008). The question therefore arises of whether Local
Authorities will act on their duties, for example to provide specific training to people
providing community care assessments for people with autism. However, the Department of
Health has established the National Autism Programme Board to oversee implementation of
the strategy at a national level, co-chaired by the Minister of State for Care Services and the
Director General of Adult Social Care.

Can exemplar services be replicated?

The strategy itself describes several services which have been developed locally for adults
with autism. For example, the Liverpool Asperger Team offers not only diagnosis but health
and social interventions for adults with Asperger syndrome (Merseycare NHS Trust, 2011).
This involves providing a diagnostic service and coordinating interventions from other
services. The strategy also highlights the Glasgow Autism Resource Centre, which is a joint
venture between health, social care and third sector organisations (NHS Greater Glasgow
and Clyde, 2011). This service provides diagnosis but also support and information
regarding employment, training and housing. Although these are presented as innovative
local solutions which are promoted in the strategy, the strategy is mostly concerned with
diagnostic services, whereas the quoted service models also provide specialist
interventions, particularly specialist workers supporting people with autism to access
other services. Arguably, because of the focus on diagnosis, the Autism Strategy is unlikely
to lead to the creation of similar services in the rest of England. Local Authorities and NHS
Trusts may be reluctant to invest in such service models at a time of financial constraint even
though actually a strong economic case has been made for them.

Economics
In 2009, the Audit Commission produced a report, Supporting People with Autism through
Adulthood (National Audit Office, 2009), which looked at the services available for people
with autism in England, and informed the development of the Strategy. Some important
points were incorporated into the strategy:
B services could be improved by better planning of services, based on higher quality data;
and
B services could be improved by raising awareness of autism across public services.
The report estimated that increasing the identification rate of adult autism could lead to
financial savings from increased employment rates, for example. An identification rate of
4 per cent would be cost-neutral. Identifying 6 per cent of adults with high-functioning autism
would save £38 million per year. This does not include financial gains to individuals from
increased employment or reduced financial burden on carers.

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 The Audit Commission went further, however, and analysed the cost versus benefits of
specialist teams for high-functioning autism, taking the Liverpool Asperger Team as one
example. The report found that while investment in specialist teams across England might
cost £40 million, this investment would be cost-neutral initially and would reap savings over
time across the health and social care sector. For example, in one area with a specialised
service, 1 per cent of adults with high-functioning autism lived in residential care, but this
figure rose to around 7 per cent in areas without such a service. The Autism Strategy, while
taking forward some recommendations from the Audit Commission report, does not promote
the provision of such specialist services, which perhaps represents a lost opportunity to
reconfigure health and social care services in an evidence-based, cost-effective manner.

Recent developments
The NAS was commissioned to develop training materials to improve the awareness of
autism and the skills of health and social care professionals and has recently completed this
work. Furthermore, the NAS and the Centre for Public Scrutiny, an independent charity, have
developed a guide to enable Local Authority Overview and Scrutiny Committees to monitor
implementation of the Autism Strategy. Overview and Scrutiny Committees are separate
from the Local Authority executive and vary in function across Local Authorities, but
generally monitor implementation of policy and report back to the executive with
recommendations. This may enable more effective implementation of the strategy.
NICE clinical guidelines for adults with autism are due to be published in 2012. However, the
Autism Strategy requires services to be developed and commissioned based on the best
available evidence. Given the difficulty in evaluating service models from the limited
evidence available, it remains to be seen whether commissioners will commit resources
before the NICE guidelines are published.

Political context
In the current economic climate, there is a significant risk that the needs of people with
autism will be relatively neglected given competing demands within smaller Local Authority
budgets. Furthermore, there appears to be little sanction against Local Authorities who do
not meet the requirements of the strategy. Relying on existing policies means vulnerable
people and their carers may need to seek redress in a piecemeal fashion, with reference to
very specific policies and services. However, the guidance is statutory and therefore failure
to follow it potentially leaves Local Authorities and NHS organisations liable to Judicial
Review. It is certainly debatable whether it is appropriate to place the onus on vulnerable
individuals and carers to seek Judicial Review if they believe their Local Authority is failing to
meet the obligations set out in the Autism Strategy, which they may not even be aware of.
The statutory guidance also makes several references to the ‘‘Big Society’’. In health and
social care, third sector organisations are already involved in the provision of statutorily
funded services, particularly mental health services. It remains to be seen whether
non-statutory organisations will be able to develop and provide services that Local
Authorities do not fund.

Conclusion
The Autism Strategy has the potential to improve services for adults with autism and
implements some of the recommendations made by the National Audit Office in 2009.
However, a clear weakness in the strategy lies in its failure to address the need for specialist
services, which some evidence suggests would both save money and improve the lives of
adults with autism. Furthermore, weaknesses also exist in measuring outcomes from the
Autism Strategy. While Overview and Scrutiny Committees provide some local monitoring, a
gap exists between Local Authorities and the National Autism Programme Board. The NAS
continues to monitor implementation of the strategy but Local Authorities themselves are not
required to publish data on their progress. Although the Department of Health has produced
‘‘outcomes and ambitions’’ to measure implementation in Fulfilling and Rewarding Lives:
Evaluating Progress (Department of Health, 2011a), Local Authorities are not required to

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measure themselves against these targets or publish their results. These outcomes are
mapped to existing, generic outcomes from outcome frameworks for public health, the NHS
and adult social care. Therefore, implementation of the Autism Strategy will be difficult to
measure, and may rely excessively on the work of third sector organisations, such as the
NAS.
In summary, the lack of focus on specialist services coupled with the lack of clear
measurement of outcomes means that despite the laudable aims of the strategy, there is a
significant risk that the needs of people with autism will not be prioritised in the current
climate of significant financial constraint across the public sector.

Summary
B The Autism Strategy aims to increase awareness of autism, establish clear pathways for
diagnosis and needs assessment, promote independent living and access to work, and
help the development of local services.
B The emphasis on accessing mainstream services, although important, may limit the
development of appropriate specialist services, especially in the current economic
climate.
B Specialist interventions that may follow diagnosis are not prioritised, even though the
economic case for them has been well made by the Audit Commission.
B Implementation of the strategy will be difficult to measure.
B NICE guidelines for adults with autism due in 2012 may help the development of better
services.

References
Carpenter, P. (2012), ‘‘Diagnosis and assessment in autism spectrum disorders’’, Advances in Mental
Health and Intellectual Disabilities, Vol. 6 No. 3.
Communitycare.co.uk (2010), ‘‘Autism strategy: no requirement to set up specialist teams’’, available at:
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Local Authority Partnerships: Handbook of Definitions, HMSO, London.
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Department of Health (2010d), Prioritising Need in the Context of Putting People First: A Whole System
Approach to Eligibility for Social Care, HMSO, London.

Department of Health (2010e), Towards ‘‘Fulfilling and Rewarding Lives’’: The First Year Delivery Plan for
Adults with Autism in England, HMSO, London.
Department of Health (2011a), Fulfilling and Rewarding Lives: Evaluating Progress, HMSO, London.
Department of Health (2011b), No Health Without Mental Health: A Cross-government Mental Health
Outcomes Strategy for People of All Ages, HMSO, London.

Her Majesty’s Government (1990), National Health Service and Community Care Act 1990, HMSO,
London.
Her Majesty’s Government (1995), Disability Discrimination Act 1995, HMSO, London.
Her Majesty’s Government (2010), Equality Act 2010, HMSO, London.
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of-autism-strategy (accessed 28 September 2011).

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 Merseycare NHS Trust (2011), ‘‘What services do we offer?’’, available at: www.merseycare.nhs.uk/What_
we_do/CBUs/Rebuild/Aspergers/What_services_do_we_offer.aspx (accessed 2 September 2011).
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Autistic Society, available at: www.autism.org.uk/news-and-events/media-centre/press-releases/press-
releases-mar-2010/3-march-government-announces-landmark-strategy-to-transform-adult-autism-
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NHS Greater Glasgow and Clyde (2011), ‘‘Facilities and services’’, available at: www.nhsggc.org.uk/
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Further reading
Conservative Party (2010), Invitation to Join the Government of Britain, Conservative Party, London.
Department of Health (2010b), ‘‘Fulfilling and Rewarding Lives’’: The Strategy for Adults with Autism in
England, HMSO, London.
Department of Health (2010c), Implementing ‘‘Fulfilling and Rewarding Lives’’, HMSO, London.

Her Majesty’s Government (2009), Autism Act 2009, HMSO, London.

Corresponding author
Ian Hall can be contacted at: ian.hall@eastlondon.nhs.uk

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