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DH INFORMATION READER BOX

Policy EstatesHR/workforce CommissioningManagement IM&TPlanning/ FinanceClinical Social care/partnership working

Document purpose Policy

Gateway reference 13521

Title Fulfilling and rewarding lives The strategy for adultswith autism in England (2010)

Author Department of Health

Publication date 3 March 2010

Target audience PCT CEs, NHS Trust CEs, SHA CEs, Care Trust CEs,Foundation Trust CEs, Medical Directors, Directorsof PH, Directors of Nursing, Local Authority CEs,Directors of Adult SSs, PCT Chairs, NHS Trust BoardChairs, Special HA CEs, Directors of HR, Allied HealthProfessionals, GPs, Higher Education Institutions,Universities UK

Circulation list

Description Fulfilling and rewarding lives sets out the GovernmentsStrategy for adults with autism. It draws on thefindings of the National Audit Office report Supportingadults with autism through adulthood (2009) andthe recommendations from the Public AccountsCommittees report (2009) of the same title.

Cross reference N/A

Superseded documents N/A

Action required N/A

Timing N/A

Contact details Social Care Policy and InnovationDepartment of HealthUnit 124 Wellington House133-155 Waterloo RoadLondon SE1 8UG

For recipients use

Crown copyright 2010

First published March 2010

Published to DH website, in electronic PDF format only

www.dh.gov.uk/publications


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Contents

CONTENTS

Foreword by the Secretary of State for Health 2

Ministerial foreword 4

Executive summary 6

Terminology 10

1. Ful lling and rewarding lives: the strategy for adults with autism in England 13

2. Increasing awareness and understanding of autism 25

3. Developing a clear, consistent pathway for diagnosis of autism 334. Improving access for adults with autism to the services and support

they need to live independently within the community 41

5. Helping adults with autism into work 49

6. Enabling local partners to develop relevant services for adults with autismto meet identi ed needs and priorities 59Our next steps 67

7. Summary of actions 68

List of policies that apply to adults with autism 72

This document is also available in the following alternative formats:easy read, Braille, large print and audio.


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FOREWORD FROM THE

SECRETARY OF STATE FORHEALTH

It has taken time for society to understand autismand sadly, too many lives have not been asful lled as they might have been, as people havefallen between the cracks. This strategy is about

making faster progress in the future to improvethe lives of people with autism and their families.

This Governments ambition backed up by awealth of programmes and investments is tounlock aspiration and make a reality of genuineequality of opportunity for all. The publication ofthis rst national autism strategy for England is asigni cant and important step to delivering thatvision for adults with autism.

Autism is sometimes described as a hiddendisability, not only because it has no physicalsigns, but also because adults with autism aresome of the most excluded, and least visible,people in the UK.

We know profound change is long overdue.

Too many adults with autism are unemployed,struggling to get by on bene ts and reliant onthe care and support of their parents both

nancially and for practical help.

The Autism Act 2009, building on the Bill broughtby Cheryl Gillan MP, showed our collectivecommitment to improve the lives of people withautism and their families and it has been backed

by a range of actions across government to boostthe pro le of autism across public services.

But our long-term vision goes beyond this.Through this strategy, we want to capitaliseon the momentum already gathering in publicservices so that adults with autism experience real

improvements and more opportunities to leadful lling and rewarding lives. We want them toreceive the right diagnosis as early as possible andaccess support if they need it, and to know thatthey can depend on mainstream public services totreat them fairly as individuals.

And, crucially, we will also ensure there is moreeffective, more tangible support for the familiesand carers that do so much for adults withautism; they must not be allowed to struggleon without our help.

But real success will depend ultimately notonly on transforming services, but on changingattitudes across our society. We need to buildpublic and professional awareness and reducethe isolation and exclusion that people withautism too often face.

Achieving these ambitions wont be easy and willtake time. But this strategy is a bold and necessarystarting point on an absolutely vital journey toimprove the lives of adults with autism.

Rt Hon Andy Burnham,Secretary of State for Health


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Foreword from the SECRETARY OF STATE FOR HEALTH


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MINISTERIAL FOREWORD

The Autism Act 2009 was a unique andgroundbreaking piece of legislation. It signalleda new commitment across government totransforming the way public services supportadults with autism. But, more importantly, it isthe foundation stone for a wider programme ofactivity across the public sector, designed to drive

that change.

This national autism strategy the rst evercreated in England is the next major landmarkin this process. It represents a shared approachtowards a common goal: a society that not onlyaccepts and understands autism, but also providesreal opportunities for adults with autism to liveful lling and rewarding lives.

The strategy is built on a fundamental recognition:too many people with autism are missing out onthe chance of the quality of life that others enjoy.This is a denial of their potential, their personalaspirations, their hopes for the future. It placesa heavy burden on their families, and, as manyhave pointed out, a heavy burden on the UK

economy too.

We know that change will be a long-term process.While the Autism Act, and our vision, indicateour ambition, this strategy brings a practicalapproach. Building on the progress we have madein improving services for children with autism, itfocuses on laying the foundations for the changewe seek: raising awareness of autism, particularlyacross public services; increasing the availabilityand consistency of diagnosis; taking steps tomake services more accessible for adults with

autism, putting personalisation across all services at the core of our approach; and looking directlyat the challenges faced by adults with autism ingetting into work and keeping a job, as part ofour wider goal of achieving full employment.

Above all, the strategy seeks to put the needs ofadults with autism on the map in every area, sothat throughout England the right services can bedeveloped, commissioned and shaped to meetthose needs.

Together, these foundations can underpin a widerprocess of cultural and social change, which isessential to realising our vision. Equally essentialis the principle of collaboration across public

services, shaping those services around the needsof adults with autism, across the whole of theautistic spectrum. We know that there are alreadymany examples of outstanding services aroundthe country that provide the support adults withautism need. We need to learn from them, bothto support the direction we take in the futureand to further improve mainstream services, to

accelerate progress towards our goal.


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Ministerial foreword

David Lammy,Minister of State forHigher Education andIntellectual Property

Diana Johnson,Minister of Statefor Schools

David Hanson,Minister of StateHome Of ce

Jonathan Shaw,Minister for DisabledPeople

Rosie Winterton,Minister of State forLocal Government

Angela Smith, Ministerof State for the ThirdSector

Andrew Adonis,Secretary of State forTransport

Claire Ward,ParliamentaryUnder-Secretary ofState for Justice

Phil Hope,Minister of Statefor Care Services


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EXECUTIVE SUMMARY

1 The Governments vision is that All adultswith autism are able to live ful lling andrewarding lives within a society that acceptsand understands them. They can get adiagnosis and access support if they needit, and they can depend on mainstreampublic services to treat them fairly as

individuals, helping them make the mostof their talents.

2 Despite the signi cant strides made overthe last decade to reduce inequality acrossthe UK, we know that adults with autismremain socially and economically excluded.They, and the people who care for them,have often been badly let down by publicservices which have failed to recogniseor respond to their needs.

3 While we know that some adults withautism do live ful lling lives, makingsuccessful and important contributions totheir communities, the economy and theirown families, currently too many adultswith autism are not able to do this. Toomany are dependent on bene ts for theirincome and on the care and support oftheir families, not only for housing butsimply to cope with their everyday lives.For those without this support, the outlookis worse: the risk of severe health andmental health problems, homelessness, and

descent into crime or addiction. The costsin nancial terms to public services are

enormous: the costs in emotional terms forboth adults with autism and their familiesmore devastating still.

4 By improving the lives of adults with autism,by enabling them to live independently,supporting them into work and while at

work, and by identifying their health needsearlier, the impact will be immense.

5 The landmark Autism Act 2009 is a symbolof the Governments commitment toachieving our vision and delivering suchan impact within our society. The rst everpiece of legislation designed to address theneeds of one speci c impairment group adults with autism it has already triggereda response, across government and publicservices, that is beginning to drive change.This strategy builds on that, setting adirection for long-term change to realiseour vision but also identifying speci c areasfor action over the next three years. It alsodraws on the ndings of the National AuditOf ce (NAO) report Supporting people withautism through adulthood .1

6 The strategy is underpinned by thefundamental principles of equality andhuman rights. It takes as its starting pointthe breadth of government policy fromhealth to social care to employment to

justice to communities that alreadyshould support adults with autism,

1. National Audit Of ce (2009) Supporting people with autism through adulthood . Report by Comptroller and Auditor-General HC 556 Session 200809. Throughout therest of this document, this is referred to as the NAO report.


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Executive summary

and seeks ways to ensure that thispolicy framework addresses their realneeds. This policy framework is whollytransforming the way public services areplanned, commissioned and delivered. Inmany areas, the changes introduced arebeginning to have an impact on peopleslives, including the lives of adults withautism. We believe it is important thatthese changes form the basis of theimproved services and support available

to adults with autism.

7 This not only re ects the current economicsituation, where every public sectororganisation is facing budget restrictionsand is required to do more with less, but isalso in line with the Governments overallpolicy direction of reducing statutory

requirements and encouraging frontlinestaff to develop services and solutionsto meet local needs. While we recognisethat these factors make it a dif cult timefor public services to respond to a newstrategy, we can no longer ignore the moralimperative to address the unmet needs ofso many members of our society.

8 The rst and fundamental step of ourstrategy is to increase awareness andunderstanding of autism across all publicservices. If frontline staff know more aboutautism, they will be better able to recognisethe condition and respond to it. This isessential to making existing policies workfor adults with autism across the entireautistic spectrum.

9 Chapter 2 of the strategy focuses onways to increase awareness in healthand social care, employment advice andother frontline public services. It includesrecommendations to improve the autismawareness training given to staff acrossgovernment, working with relevant bodiesin each sector as well as drawing on theinput of adults with autism themselves tobuild awareness of autism across frontlinestaff. The goal is to develop and deliver

training and information resources thatenable staff to adapt the way they provideservices to an adult with autism fromtheir behaviour and communication tomore fundamental changes, such as thetreatments recommended in healthcareand the choices offered in social care oremployment support.

10 The chapter also recognises theopportunities that come from putting autismawareness on the agenda with employers,as part of the Department for Work andPensions (DWP) programme of engagementwith employers around recruitment andretention of disabled people.

11 The second strand of our strategy focuseson diagnosis and our goal of increasingcapacity around diagnosis of autism inevery area of the country. Chapter 3explains how we are working with theNational Institute for Health and ClinicalExcellence (NICE), which is producing aclinical guideline that will include diagnosticprocesses. This can then be used by localNational Health Service (NHS) bodies to


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develop a clear and consistent pathwayfor diagnosis.

12 Local commissioning of specialistautism teams can be an important wayto build capacity locally, particularly arounddiagnosis. Across the country, there area number of successful models of suchteams and some examples are includedin chapter 3.

13 Crucially, we will also ensure that diagnosisis not an end in itself, but rather thebeginning of improved support for an adultwho has been diagnosed with autism. Inparticular, we underline the duty under theNHS and Community Care Act 1990 forlocal authorities to assess a person whomay be in need of community care services.

Diagnosis of autism is already a reasonfor such an assessment and needs to berecognised as such.

14 An assessment of need is only valuable ifeffective services are available to supportadults with autism. That is why chapter 4sets out recommendations for improvingaccess for adults with autism to theservices and support they need. Like otherchanges, this is not something that canhappen overnight, but the strategy createsa strong platform for beginning and drivingforward the process of reform. In particular,it reiterates the requirement under theDisability Discrimination Act 2005 (DDA) forservices to make reasonable adjustmentsfor disabled adults: this includes adultswith autism.

15 The chapter then examines how we canmake personalisation of social care workfor adults with autism giving themgreater choice and control over the servicesand support they receive. A key part ofthis is ensuring a smooth and successfultransition to adult services for those peoplewho have been diagnosed with autismas children.

16 Over the last few years, the Government

has made it clear that work is the best formof welfare, the most effective route out ofpoverty and a vital part of social inclusion.However, adults with autism are currentlysigni cantly under-represented in thelabour market. That is why chapter 5 looksat how we will help adults with autisminto work. It explains changes underway

to the welfare system to better supportadults with autism, through effective workpreparation programmes and throughimprovements to our bene ts and taxcredit systems.

17 While these chapters explain our overalldirection, it is clear that the key tochange lies at the local level. In chapter 6,therefore, we focus on building capacityand capability at local level to enablelocal partners to develop relevant servicesfor adults with autism to meet identi edneeds and priorities. We set out somekey recommendations, rooted in effectivepractice around the country, that localpartners should consider in planning andcommissioning services. In particular, wemake it clear that we expect each local areato develop its own commissioning plan for


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Executive summary

services for adults with autism buildingon the outcomes of the Joint StrategicNeeds Assessment (JSNA). Such plans helpmake it clear to all local partners, and localrepresentative groups, how change willbe delivered in each area.

18 The strategy is designed to set overalldirection. It will be followed by a rst-year delivery plan by 31 March 2010, andthe publication of statutory guidance for

health and social care and a full deliveryplan by the end of 2010. It will be formallyreviewed in 2013. Progress on deliveringthe strategy will be led nationally by a newautism programme board, which will beco-chaired by the Minister for Care Servicesand the Director-General of Social Careat the Department of Health (DH).


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TERMINOLOGY

In producing this strategy, we recognise thatthere are a number of terms that differentindividuals and groups prefer to use, includingautistic spectrum disorder, autistic spectrumcondition, autistic spectrum difference andneuro-diversity. In this strategy, we use theterm autism as an umbrella term for all such

conditions, including Asperger syndrome. This isin line with the approach to terminology adoptedby key autism representative organisations,including the National Autistic Society (NAS),as well as the NAO and the Public AccountsCommittee (PAC) in their recent reports, and willhelp ensure the strategy is understood by andaccessible to the widest possible audience.

For the purposes of this strategy, autism isde ned as a lifelong condition that affects how aperson communicates with, and relates to, otherpeople. It also affects how a person makes senseof the world around them. The three main areasof dif culty, which all people with autism share,are known as the triad of impairments. They aredif culties with:

social communication (e.g. problems usingand understanding verbal and non-verballanguage, such as gestures, facial expressionsand tone of voice)

social interaction (e.g. problems in recognisingand understanding other peoples feelings and

managing their own)

social imagination (e.g. problems inunderstanding and predicting other peoplesintentions and behaviour and imaginingsituations outside their own routine).

Many people with autism may experience someform of sensory sensitivity or under-sensitivity, for

example to sounds, touch, tastes, smells, light orcolours. People with autism often prefer to havea xed routine and can nd change incrediblydif cult to cope with. Many people with autismmay also have other conditions such as attentionde cit hyperactivity disorder (ADHD), a learningdisability or dyspraxia.

Autism is known as a spectrum condition,both because of the range of dif culties thataffect adults with autism, and the way thatthese present in different people. For example,Asperger syndrome is a form of autism.People with Asperger syndrome typically havefewer problems with speaking than others onthe autism spectrum, but they do still havesigni cant dif culties with communication thatcan be masked by their ability to speak uently.They are also often of average or above averageintelligence.


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Terminology


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Ful lling and rewarding lives: the strategy for adults with autism in England

1. FULFILLING AND REWARDING LIVES:

THE STRATEGY FOR ADULTS WITHAUTISM IN ENGLAND

Our vision for adults with autisticspectrum conditions

1.1 The Governments vision for transformingthe lives of and outcomes for adults withautism is:

All adults with autism are able to liveful lling and rewarding lives within asociety that accepts and understandsthem. They can get a diagnosis andaccess support if they need it, and

they can depend on mainstreampublic services to treat them fairly asindividuals, helping them make themost of their talents.

1.2 For adults with autism, this means:

having a right to receive an assessment

of need from social services

getting the same opportunities foreducation and further education aseveryone else

being supported to get a job and stayin work

being able to choose where to live just like anyone else

having relationships and social networks

having their health needs properly met ina way which is appropriate for someone

with autism

being safe from hate crime anddiscrimination

living in a society where peopleunderstand, respect and accommodatedifference, and

receiving support to live independently,as appropriate.

1.3 This vision is grounded rmly within anequality and human rights approach. It isbased on the fundamental principle thatadults with autism have the same rights as

everyone else, and that they should be ableto access services and participate in societyon an equal basis.

1.4 We know that despite the signi cantstrides made over the last decade toincrease equality and tackle exclusion adults with autism are currently nottreated fairly. They, and the people whocare for them, have often been badly letdown by public services which have failed


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to recognise or respond to their needs.This must change.

Realising our vision

1.5 The vision set out above is a long-termgoal. Achieving it requires a cultural shift,where the complexities and challengesof autism are understood not only bypublic services but also more widelywithin society. It also requires many of the

changes currently underway within publicservices to be embedded: approaches suchas personalisation in care provision, Work Choice and integrated local commissioningare essential to giving adults with autismthe right support in the right way.

1.6 But the bene ts of achieving this vision

are huge. While we know that some adultswith autism do live ful lling lives, makingsuccessful and important contributions totheir communities, the economy and theirown families, currently too many adultswith autism are not able to do this. Toomany are dependent on bene ts for theirincome and on the care and support oftheir families, not only for housing butsimply to cope with their everyday lives.For those without this support, the outlookis worse: the risk of severe health andmental health problems, homelessness, anddescent into crime or addiction. The costsin nancial terms to public services areenormous: the costs in emotional terms forboth adults with autism and their familiesmore devastating still. By improving thelives of adults with autism, by enablingthem to live independently, supporting

them into work and while at work, and byidentifying their health needs earlier, theimpact will be immense.

1.7 This strategy is an essential step towardsrealising our vision. It builds on the workthat is already underway to transform theservices and support available to adultswith autism, in particular the Autism Act2009. While the strategy sets the directionfor this long-term change, its focus is on

the shorter term speci cally, the nextthree years after which we committo formally reviewing progress andrevising the strategy as necessary .During these three years, our strategyfocuses on:

increasing awareness and understanding

of autism among frontline professionals

developing a clear, consistent pathwayfor diagnosis in every area, which isfollowed by the offer of a personalisedneeds assessment

improving access for adults with autismto the services and support they need tolive independently within the community

helping adults with autism into work,and

enabling local partners to plan anddevelop appropriate services for adultswith autism to meet identi ed needs andpriorities.


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1.8 To oversee progress against thestrategy, and provide overall directionand governance, DH is now settingup a national autism programmeboard, which will be co-chaired bythe Minister for Care Services and theDirector-General of Social Care. Theboard will include representatives fromother government departments as wellas stakeholder groups.

The Autism Act 2009: a legislativelandmark

1.9 The Autism Act was created in responseto increasing evidence that a signi cantproportion of adults with autism, across thewhole autistic spectrum, are excluded bothsocially and economically. For example,

estimates suggest that only 15% of adultsdiagnosed with autism are in employment, 2 health outcomes are worse than for thepopulation at large, and a large numberof adults with autism continue to live withtheir families rather than independently intheir own homes. This is not acceptable,and it is clear that action needs to betaken locally, regionally and nationallyto lead change. While we recognise thatthe economic climate, and particularlythe budgetary constraints on all publicservices, which are compelled to do morewith less, make it a dif cult time for publicservices to respond to a new strategy, wecan no longer ignore the moral imperative

to address the unmet needs of so manymembers of our society.

1.10 Valuing People Now ,3 the Governmentsstrategy for people with learningdisabilities, recognised that adults withautism are some of the most excluded andleast heard people in society and thatservice providers, commissioners and policymakers were not speci cally addressingtheir needs. While action being taken

forward under Valuing People Now willbene t those adults with autism who alsohave learning disabilities approximatelyhalf of them the Government is clear thatmore must be done to support all adultsacross the whole autistic spectrum.

1.11 Building on the evidence set out in a series

of important and telling reports, includingI Exist (published by NAS), 4 the AutismAct 2009 sets out the Governmentscommitment to improve inclusion andensure adults with autism are able toparticipate fully in society.

The immediate impact of the

Autism Act

1.12 The Autism Act 2009 was the rst everpiece of legislation designed to address theneeds of one speci c impairment group:adults with autism. The publication ofthis unique and groundbreaking Act hasbrought the challenges faced by adultswith autism to the fore as never before.

2. NAS (2008) Think Differently Act Positively: Public perceptions of autism , p. 19(www.autism.org.uk/content/1/c6/01/47/21/think%20diff%20acrt%20pos.pdf)

3. DH (2009) Valuing People Now: A new three-year strategy for people with learning disabilities4. NAS (2008) I Exist: The message from adults with autism in England


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It has already helped raise awareness ofautism, generating widespread media andpublic discussion. It demonstrates thatthe Government recognises autism as alifelong condition that has a major impacton the lives of both those people with thecondition, and those who care for andsupport them.

1.13 The development of the Act, meanwhile,highlighted a range of issues and

challenges around support for adults withautism which government bodies havealready begun to address.

To further increase knowledge on theprevalence of autism in adults, DH isfunding a study to explore rates ofautism in a representative sample of

adults in England. This will report itsndings in 2011.

This comes in addition to the DHcommitment, set out in Valuing PeopleNow (2009), to establishing a newthree-year Public Health Observatory(PHO) in relation to people with learningdisabilities. The work of this new PHOwill include the collation of existing dataon the prevalence of people with autismwho also have a learning disability, whatservices they access, and the quality ofthose services.

To improve processes around diagnosis,referral and management of autism,NICE is developing two new clinicalguidelines one covering adults,

and one covering children andyoung people.

To help put the needs of adults withautism on the map in every area,estimates of numbers of adults withautism will be included in the revisedcore data set for JSNAs, due to bepublished in spring 2010.

To reinforce the requirement under

the DDA that services should makereasonable adjustments for adults withautism, the 2010/11 NHS StandardContract for Mental Health and LearningDisability Services includes, for the rsttime, speci c reference to adults withautism.

To help drive forward the personalisationagenda in social care for adults withautism, the Social Care Institute forExcellence (SCIE) is working with NAS toproduce an At a Glance PersonalisationBrie ng on Autism one of a series ofsuch brie ngs for different groups.

To accelerate the development ofeffective local services for adults withautism, DH is planning to extend itsprogramme of Payment by Results forMental Health to include adults withautism more effectively. The recentlypublished care clusters which act as anational currency (common contractingand payment unit) will be available foruse in 2010/11, but do not adequatelycapture the care requirements of adultswith autism. Therefore DH will work with


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autism experts during 2010 to considerhow this can be addressed.

As part of ongoing measures to informgood practice in services at transition,it will be important to explore throughresearch the speci c experiences ofyoung people with autism and theirfamilies of multi-agency transitionservices. That is why DH and theDepartment for Children, Schools and

Families (DCSF) are funding a study,which will report in January 2012.

In response to a PAC comment thatuniversity students with autismmay need to use Disabled StudentsAllowances (DSAs) to fund social, ratherthan course-related, support, 5 the

Department for Business, Innovationand Skills (BIS) will take steps to clarifythe types of support that students withautism can pay for with their DSA.

1.14 There are also emerging indicationsthat the needs of adults with autism arebecoming recognised more widely, andthat local services are beginning to evolveto meet those needs. The Care QualityCommission report The State of HealthCare and Adult Social Care in England 2009 found that 83% of local authoritiessurveyed were now considering theneeds of adults with autism in JSNAs,commissioning strategies and plans. 6 Wenow need to build on this momentum.

1.15 In developing the Act, Parliamentrecognised that much had already beendone to improve the lives of childrenand young people with autism. It alsoacknowledged that actions now underwaywould continue to support children andyoung people more effectively. As a result,the focus of the Act is on adults, and itspeci cally requires the development of astrategy for meeting the needs of adults inEngland with autistic spectrum conditions

by improving the provision of relevantservices to such adults by local authorities,NHS bodies and NHS foundation trusts. 7 This document provides that strategy.

1.16 The Act also mandates the developmentof statutory guidance for health and socialcare to support the implementation of the

strategy. This will be published no laterthan 31 December 2010 and must includeguidance about:

(a) the provision of relevant servicesfor the purpose of diagnosing autisticspectrum conditions in adults;

(b) the identi cation of adults with suchconditions;

(c) the assessment of the needs of adultswith such conditions for relevant services;

(d) planning in relation to the provision ofrelevant services to persons with autisticspectrum conditions as they move frombeing children to adults;

5. House of Commons PAC (2009) Supporting people with autism through adulthood 6. Care Quality Commission (2009) The State of Health Care and Adult Social Care in England: Key themes and quality of services in 20097. Autism Act 2009, section 1 (1)


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(e) other planning in relation to theprovision of relevant services to adultswith autistic spectrum conditions;

(f) the training of staff who providerelevant services to adults with suchconditions;

(g) local arrangements for leadershipin relation to the provision of relevantservices to adults with such conditions. 8

The statutory guidance will build on thecore areas of activity set out in this strategy.

Implementing the strategy

1.17 We will also publish a rst yeardelivery plan by 31 March 2010 , setting

out our priority actions to make changehappen, including the developmentof regional delivery plans. This will befollowed by a further delivery plan, givingmore detailed plans for the longer term.

1.18 This strategy, along with the statutoryguidance and delivery plans, is also anintegral part of the Governments responseto the NAO report and the PAC report. TheGovernment agrees with the conclusionsset out in both of these important reports;the core themes of the NAO report betterstrategy and planning, based on goodinformation and raising levels of knowledgeand awareness of the nature of autism andthe potential needs of autistic people areat the heart of this strategy.

1.19 We have examined the recommendationsmade by both the NAO and PAC in depth,particularly in the light of the responses tothe consultation conducted during summer2009, and these are re ected in thisstrategy. Where we believe that existingmeasures and approaches will better meetthe objectives which NAO and PAC setout, we will make this clear. Further detailson the actions we propose to take will beincluded in the rst-year delivery plan, and

some speci c recommendations will betaken forward in that delivery plan and thestatutory guidance that will follow.

1.20 Of cials have also met NAO representativesto discuss ways to work together to buildon the data modelling and analysis theNAO set out in its report, to improve our

shared understanding of the costs andbene ts of interventions to improve thelives of adults with autism.

The focus of the strategy

1.21 The strategy focuses on ve core areasof activity:

increasing awareness and understandingof autism among frontline professionals

developing a clear, consistent pathwayfor diagnosis in every area, which isfollowed by the offer of a personalisedneeds assessment

improving access to the services andsupport which adults with autism

8. Autism Act 2009, section 1 (5)


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need to live independently within thecommunity

helping adults with autism into work,and

enabling local partners to plan anddevelop appropriate services for adultswith autism to meet identi ed needsand priorities.

These are important in themselves, butmore signi cantly they are the foundationsfor the further change needed to achieveour long-term goal.

1.22 The approach in this strategy is to identifyhow to make existing policies workbetter for adults with autism. It does not

depend on new investment vital in thecurrent economic context, where everypublic sector organisation is facing budgetrestrictions and is required to do more withless. It avoids putting increased burdenson frontline staff delivering public services,on businesses or on local planners withadditional statutory requirements. It reliesinstead on the more substantial approachof ensuring mainstream services activelyidentify and respond to the needs of adultswith autism.

Building on existing policy

1.23 This approach re ects the fact that thereis already a wealth of government policyand initiatives that should support adultswith autism. These together embody the

agenda to personalise public services andinclude Valuing People Now and ValuingEmployment Now , New Horizons , PuttingPeople First , High Quality Care for All ,World Class Commissioning , CreatingStrong, Safe and Prosperous Communities ,Transforming Adult Social Care , Accessto Work , Work Choice , Improving Health ,Supporting Justice , Lord Bradleys reviewof people with mental health problems orlearning dif culties in the criminal justice

system and Roadmap 2025 .9

1.24 These programmes are about whollytransforming the way public services areplanned, commissioned and delivered.In many areas, the changes introducedthrough these initiatives are beginning tohave an impact on peoples lives, including

the lives of adults with autism. Publicservices are adapting the way they workand building their skills and capacity. Webelieve it is important that these changesform the basis of the improved services andsupport available to adults with autism.We have heard the message that peopleare missing out because they dont fallinto either the learning disability or mentalhealth box. This is unacceptable.

1.25 Personalisation is about assessing theparticular needs of each individual andgiving them choice and control to buildthe right package of care based on thoseneeds. The goal of this strategy is to movefrom tting people into services to ttingservices to meet peoples needs.

9. See the list of policies that apply to adults with autism at the end of this document (p. 72).


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The core of our strategy

1.26 The rst, and fundamental, step towardsthis is to increase awareness andunderstanding of autism across all publicservices one of the NAOs core themes.If frontline staff know more about autismthey will be better able to recognise thecondition and respond effectively whenthey are working with adults with autism.This is essential to making the existing

policies work for adults with autism. Asa minimum, autism awareness should beincluded as part of general equality anddiversity training across the public sector.In certain professions particularly healthand social care more speci c trainingis required, both for those entering theprofession and those already working.

We therefore commit to workingwith Skills for Health, Skills for Care,professional bodies and the RoyalColleges to ensure that effectivetraining is developed.

1.27 Increased awareness goes hand in handwith improving access to diagnosis. Many

individuals and families have found thatgetting a diagnosis can be a dif cult,time-consuming and frustrating process.Diagnosis can be important not only toindividuals and families but also to thoseworking with adults with autism. It is likelythat staff will nd it easier to help someonewith autism if they know that this is theirdiagnosis.

1.28 Thats why the second strand of ourstrategy is to develop a clear, consistent

pathway for diagnosis of autism across the country. To support this, NICE isdeveloping a clinical guideline which willinclude diagnostic processes. Our aim is toincrease capacity around diagnosis so thatin every area of the country people haveeasier access to diagnosis if they want it.

1.29 Crucially, we will also ensure that diagnosisis not an end in itself. The NHS andCommunity Care Act 1990 places a duty

on local authorities to assess a person whomay be in need of community care services.Diagnosis of autism is a reason for such anassessment and needs to be recognisedas such.

1.30 An assessment of needs is a vital steptowards the third strand of our strategy:

to improve access for adults withautism to the services and supportthey need to live independently within thecommunity. For many, this simply meansbeing able to access mainstream servicesmore easily creating parity of access toservices across the whole public sector.Such services are designed to be availableto all: people with autism must be able tobene t from them.

1.31 Equality and human rights legislation,including the DDA, makes it clear thatservices are required to make reasonableadjustments for disabled adults: thisincludes adults with autism. We committo delivering guidance to indicatethe kinds of adjustments that mightusefully be made, from physicaladjustments to premises to improving


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Understanding the parameters of thestrategy

1.36 The strategy seeks to represent the needsof those across the entire autistic spectrum,and those who care for and support them.It has been developed using the coreprinciples of inclusivity and co-production,with extensive public consultation 11 andthe involvement of an External ReferenceGroup on autism. We have sought the

views of adults with autism themselves,and also their families and informalcarers, representative organisations andprofessionals working in any eld whocome into contact with adults with autism.

1.37 The consultation process also highlightedexamples from around the country of

effective ways to adjust and developservices to support adults with autism. Thestrategy and particularly the forthcomingguidance will share these examples, tohelp local commissioners and plannerslearn from what works.

1.38 We believe that, over the next three

years, many of these approaches willbecome more commonplace. Throughthis, we will gain a better understandingof best practice. Other ongoing activities,including the implementation of the autismstrategy in Wales, as well as drawing onthe evidence that we have and continueto gather about rates of autism, willalso inform our future direction whenthe strategy is reviewed in 2013. This

review will naturally involve the views ofstakeholders, and in particular the viewsof adults with autism and their families.

1.39 This strategy is a strong start to a long journey. Fundamental to delivering realinclusion and equality for people withautism is a change in culture, attitudes andbehaviours across the public sector. Thatcannot be achieved overnight. That is whywe commit to keeping progress under

review so that we can take furtheraction if the improvements we seekare not delivered .

1.40 Change will be a long-term process. Butthe actions and approach described belowwill deliver a real impetus and set a clearframework for development of local

partnerships and services to transformthe lives of people with autism.

11. The Overarching report of ndings from the Adult Autism Strategy consultation activities is available atwww.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_110923A summary of submissions received can be found at www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_111278


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Increasing awareness and understanding of autism

2. INCREASING AWARENESS AND

UNDERSTANDING OF AUTISMFrontline sta , rom GPs to beneftsadvisers, acknowledge that theirunderstanding o autism is limited. Whilemost pro essionals know somethingabout autism, they do not necessarily

understand how autism a ects people.This makes it hard or them to recogniseautism and communicate appropriately.It also means they may have little ideao how to adapt their behaviour andtheir services.

In this chapter, we set out our strategy to

increase understanding o autism by:

improving autism awareness trainingor all rontline public service sta , in

line with the needs o their job, and

developing specialist training or stain health and social care.

Awareness of autism today

2.1 Although most people have heard of autism, they do not actually understand thewhole spectrum and how it affects peopledifferently. Most will cite Rain Man and assume that all autistic people are the same

as the character in the lm. 12

2.2 As adults with autism, or their family andcarers would testify, this is simply not thecase and this stereotyping is one of thebiggest sources of frustration and causesof isolation.

2.3 While causing problems in all aspects ofeveryday life, a lack of understanding ismost damaging in public services.

It can mean adults with autism do nottrust public services, and creates a barrierto their wanting to use them.

A lack of understanding that autismis a spectrum condition can lead toinappropriate, stereotypical or narrowresponses. Adults with autism have toldus about employment advisers whohad recommended only certain types of

jobs to them, social workers who hadassumed that all people with autism have

a learning disability, and others who hadsimply directed all adults with autism toAsperger syndrome support groups.

If staff do not know about autism andhow it affects behaviour and responses,then they can have no idea of how toadjust the way they deliver services, their

12. This quotation comes from a consultation response. Throughout this strategy, we make frequent use of such responses, unedited. Any quotation in italics is a consultationresponse.


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approach to communication or theirexpectations.

Professionals have a habit of asking the person with an ASC [autism] for insight into their own problems e.g. why do

you think you are feeling like this? The person struggles to nd a reason and comes up with whatever they can think of at the time.

Service users [adults with autism] a reoften treated under general anaesthetic in hospital just to treat simple conditionsbecause the person wont keep still and alternative solutions for treatment havenot been explored.

In the criminal justice system, police

of cers, probation services andcourts may all be unaware of thecommunication challenges posed leading to overly heavy-handedresponses to incidents.

People think that autistic people arebeing rude or arrogant and ban themfrom cafes, pubs, cinemas etc. They call the police who also believe the autistic

person to be arrogant, rude etc and thenarrest them for a public order offence.

2.4 Many professionals recognise that this lackof understanding is a problem. The NAOreport found that eighty per cent of GPsfeel they need additional guidance andtraining to manage patients with autism

more effectively. 13 This refers not only toknowing more about how to communicatewith individual patients, but also to havingthe understanding to tailor treatmentprogrammes or interventions to re ectthe needs of patients with autism.

Improved understanding makesa big difference2.5 Where professionals do understand autism,

however, the impact on services and

on the lives of adults with autism isimmense. The consultation received severalexamples of this, with respondents citingGPs and dentists, colleges and universities,who have sought to understand autismand used that understanding to improveservices. Our goal is to ensure that suchunderstanding is more widespread. This

is wholly in line with the NAO report andrecommendations. However, increasingawareness and understanding of autismshould be considered as a starting pointand not a solution in itself.

2.6 Equally, there are many examples fromwithin the community, of individuals whohave informed themselves about autism tohelp them better respond to an adult theyknow or work with.

My sons cleaners are the most valuableof all his supporters. They have been onthe internet, looking up Aspergers and areable to talk with him effectively. They cleanhis house well and he knows what they are

13. NAO (2009) Supporting people with autism through adulthood , p. 19, para 2.3


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there for. They do not patronise, placateor criticise.

Increasing awareness andunderstanding of autism

Improving autism awareness training for allfrontline public service staff, in line with theneeds of their job2.7 When adults with autism use public

services, all too often the onus is on them

(or their carers) to explain to staff whathaving autism means. In some cases, thiscan affect their eligibility for nancialsupport; in others, it can make a majordifference to the advice they receive. Whenit comes to the criminal justice services, itcan change the way that police of cers orcourts view a situation.

2.8 To tackle this and increase understandingof autism among frontline staff, werecommend that autism awarenesstraining should be included withingeneral equality and diversity trainingprogrammes across all public services .For example, autism awareness could beincluded as an integral part of the trainingstrategy outlined in Improving Health,Supporting Justice .14 Extending equalityand diversity training programmes in thisway is not just good practice: it re ects theduty under the DDA to make reasonableadjustments for disabled adults includingadults with autism.

2.9 While it will be up to individualorganisations to decide how to provide

such training, the forthcoming statutoryguidance will provide examples of bestpractice for health and social care, andemphasise the importance of involvingadults with autism and their carers indeveloping and delivering training .

2.10 This training should focus less on thetheory of autism and more on giving staffan insight into how autism can affectpeople, drawing directly on the experiences

and input of adults with autism and theirfamilies. This will better enable staff tounderstand the potential behaviours ofadults with autism in different settings,so they can respond appropriately andmake reasonable adjustments to betteraccommodate adults with autism.

2.11 A particular area where adults withautism have highlighted the need forincreased awareness is among employmentand bene ts advisers. This reinforcedthe ndings of the NAO report. SinceNovember 2005, Jobcentre Plus hasincluded autism-speci c content as part ofits training for new Disability EmploymentAdvisers (DEAs). To enable existing DEAsto acquire and maintain their knowledgeof autism, Jobcentre Plus has supportedtwo autism tutorials held by the EmployersForum on Disability. Events such as thesehelp advisers, including DEAs, to developan even greater understanding of autismand the issues related to employment. Itwill now build on this by ensuring thatautism awareness training is providedto all DEAs who have not yet received

14. DH (2009) Improving Health, Supporting Justice: The National Delivery Plan of the Health and Criminal Justice Programme Board


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it , and reviewing ongoing learningprocesses to make sure DEAs maintainand update their knowledge.

2.12 Jobcentre Plus has also focused on ways toimprove the autism awareness of PersonalAdvisers and make sure they becomeaware of autism and the issues related toemployment earlier in the training processthan before. It has done this by speci callydirecting advisers, during their initial

training, to guidance on autism, developedin consultation with individuals andorganisations who understand autism andhave expertise in responding to those withthe condition.

2.13 Personal Advisers continue to have accessto online training modules covering autism,

as well as the advice of DEAs on speci cdisabilities.

2.14 We believe it is therefore essential thatautism awareness training is availableto all staff in the criminal justicesector. Currently, there is a programme ofawareness training for prison staff whichaims to raise awareness of the needs ofprisoners who have learning disabilities.This programme, which is supported by theDH National Learning Disability OffenderSteering Group, includes autism awareness.

Developing specialist training for staffin health and social care2.15 Health and social care are sectors where

the need for training is perhaps evengreater. Staff here come into contact withadults with autism most frequently, and can

be highly in uential in determining the kindof support adults with autism receive, boththrough needs assessment processes andin terms of the actual care and treatmentprescribed or provided.

2.16 We believe it is therefore essential thatautism awareness training is availableto everyone working in health or socialcare from specialist consultants to GPreceptionists, whose response to an adult

with autism in the waiting area or trying tobook an appointment may in uence theirwillingness to visit their doctor.

2.17 That training must lead not only toimproved knowledge and understandingbut also to changing the behaviour andattitudes of health and social care staff. To

do this, training should re ect the actualsituations staff work in.

2.18 We will therefore work with partnersto develop effective training modulesand approaches which can be used bylocal authorities and primary care trusts(PCTs) to create training programmeslocally. The statutory guidance to bepublished in 2010 will provide examplesof effective approaches, drawing on theexperience of previous programmes suchas the training provided around learningdisabilities to improve the knowledge offrontline practitioners. This may includee-training modules and half-day or full-day training courses from experts in thediagnosis and management of autism.


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2.19 DH has also recently commissioned thedevelopment of new online resourcesand information about autism forthose working in the health andsocial care sectors. These will providean instantly accessible resource forprofessionals and practitioners to refreshtheir knowledge and improve their abilityto understand and respond appropriatelyto people with autism.

2.20 Clearly, training the millions of people whowork in the health and social care sectors isan enormous challenge and cannot happenovernight. We will work with PCTs andlocal authorities to identify prioritygroups for training many of whomwill be staff directly involved in providingresidential or day care or supported living

services.

2.21 The end goal is that all NHS practitionerswill be able to identify potential signsof autism, so they can refer for clinicaldiagnosis if necessary (see chapter 3), butmore importantly so they can understandhow to adapt their behaviour, andparticularly their communication, whena patient either has been diagnosed withautism or displays these signs. This in turnwill mean that adults with autism feel morecomfortable seeking healthcare not onlyreducing the likelihood of challengingbehaviour in healthcare settings, but moresigni cantly meaning their health needs willbe identi ed and addressed earlier.

2.22 We also want to see the developmentof specialist training in health and social

care so that staff from consultants tocommunity nurses who wish to specialisein autism or develop further knowledge cando so, supported by their local health andsocial care community. The end goal hereis that, within each area, there are somestaff who have clear expertise in autism.They can then be consulted as requiredby colleagues.

2.23 While in-house training and continuous

professional development (CPD) will raiseawareness of staff already working in thehealthcare sector, it is equally importantthat autism awareness is part of thetraining for those coming into healthcareprofessions. We believe that autismawareness should be part of the coretraining curricula for doctors, nurses

and other clinicians , and we committo working with the General MedicalCouncil, which sets expected outcomesand standards for medical schools, andthe Postgraduate Medical Education andTraining Board to determine how we candeliver this goal. We are also working withthe Royal College of General Practitioners,the Royal College of Nursing, the BritishPsychological Society and the Royal Collegeof Psychiatrists to improve the quality ofautism awareness training in their curricula.Finally, and crucially, we are also workingwith the sector skills councils (SSCs), Skillsfor Health and Skills for Care to developthe training materials, drawing on theirexpertise in how to build knowledgemost effectively.


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2.24 In social care, we recommend thatautism awareness should be anessential part of the training givento staff carrying out community careassessments , and all local authoritiesare expected to ensure that their staffhave had such training. Again, this is anapproach that the NAO report endorsed.The statutory guidance will provideuseful examples on how to do this, whileemphasising that assessment itself should

be conducted in line with the processesand principles adopted in the developmentof Working to Put People First: The Strategy for the Adult Social Care Workforce inEngland .15

2.25 There should also be more advancedtraining for those wishing to follow career

pathways that will focus on working withadults with autism such as becomingpersonal assistants, occupational therapistsor residential care workers. This wouldhelp increase the capacity of the social careworkforce to understand and meet theneeds of adults with autism.

Raising awareness among and throughemployers2.26 Engaging with employers has been a highly

successful strand of DWPs work to supportdisabled people into employment. DWP iscontinuing to work with key employers ata national level to better engage them withthe recruitment and retention of disabledpeople, including adults with autism.While this approach does not speci cally

target any one disability, its aim is toincrease opportunities for disabled peopleand overcome the barriers they face in

nding work.

2.27 During 20072009, the Employ Ability campaign, with support from JobcentrePlus, developed successful workshops toeducate employers about the potentialbene ts and obligations of employing staffwith all kinds of dif culties and disabilities.

Jobcentre Plus is continuing to use theknowledge gained from this event toeducate and positively in uence employers.

2.28 This has the potential to deliver a numberof bene ts for adults with autism. As wellas leading to more adults with autismbeing in work, it also provides a key means

of changing attitudes about autism acrossthe rest of the workforce. The knowledgethat comes from working in close contactwith adults with autism on a day-to-daybasis is invaluable.

2.29 In line with this approach, the PACrecommended that DWP work withemployer organisations to raise awarenessof the bene ts of employing people withautism, and the adjustments needed tosupport them. 16

2.30 In response to this recommendation,DWP is investigating whether existingcampaigns and programmes suchas Employ Ability can be extended

15. DH (2009) Working to Put People First: The Strategy for the Adult Social Care Workforce in England 16. House of Commons PAC (2009) Supporting people with autism through adulthood


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to include more examples of adultswith autism .

2.31 Under the DDA, employers are required tomake reasonable adjustments to workplaceconditions and organisational processesto better support adults with autism. Butas well as promoting the employment ofadults with autism, another vital aspectis to help build an understanding amongthe wider workforce of what working with

an adult with autism might mean. Thisneed not be limited to those who directlywork with an adult with autism, or theHR staff. Instead, as a family care grouprecommended, For large organisationsthe general staff training guidance should include autism awareness training to alevel where staff know the potentially

dif cult situations which could arise and feel con dent enough to manage them

successfully .

2.32 This can be easily integrated into diversityawareness training and like otheraspects of such training helps buildunderstanding, reduce con ict and aboveall improve working performance andculture. Government organisations canlead the way in this, and in future it willbe expected that autism awarenesstraining is included in the equality anddiversity planning and single equalityschemes of all central governmentdepartments .

Raising public awareness2.33 One of the bene ts of this approach

to raising awareness of autism through

public services and employers is thatit will also begin the process of raisingpublic awareness more generally, reducingstereotypes and misconceptions.

2.34 This kind of increased public awareness isessential to achieving our long-term visionof a society that accepts and understandsadults with autism.


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Developing a clear, consistent pathway for diagnosis of autism

3. DEVELOPING A CLEAR, CONSISTENT

PATHWAY FOR DIAGNOSIS OF AUTISMFor many adults, receiving a clinicaldiagnosis o autism is an important steptowards a ulflling li e. It can not onlyhelp them and their amilies understandtheir behaviour and responses, but

should also help with access to servicesand support, i they need them.

Currently, diagnosis can be a complexand lengthy process. Adults with autismtalk o having to battle hard sometimes

or years to get a diagnosis, and thenfnding that diagnosis is being challenged

when they try to access services.

This strategy makes recommendationsor changing that process to develop

a clear and consistent pathway ordiagnosis in every area, and:

increasing capacity around diagnosis

ensuring a diagnosis is recognisedas a reason or a community careassessment or reassessment, and

providing relevant in ormation toadults with autism and their amily orcarers at the point of diagnosis to helpthem understand the condition andaccess local support.

Diagnosis today

3.1 As with any condition, identi cation ofpossible autism is the essential rst stepto effective support. But for many adultswith autism, there is a need and a desirefor a formal clinical diagnosis somethingthat they can then refer to when seekingto access services. This can be as importanta step for parents or carers as for theindividual with autism.

3.2 Diagnosis is particularly important foradults who have not previously had theircondition recognised: their life to date mayhave been greatly affected by a sense ofnot tting in, of not understanding theway they respond to situations or whysocial settings, for example, are dif cult.It is equally important for their families orthose who care for and support them: inline with the Think Family agenda, it can be

an important step in ensuring that supporttakes account of how autism can affect thewhole family.

3.3 This is the case even for those who arealready receiving support for a learningdisability or mental ill-health: diagnosis ofautism can change the way they are treated

and supported.


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3.4 The majority of those diagnosed withautism received their diagnosis as children.DCSF and DH have worked closely overa number of years to encourage earlyidenti cation of potential autism and seekto link this with relevant support in schools.As these processes continue to strengthen,and are backed by improvements to thetransition process into adulthood, weshould see a reduction in the numbersof adults with autism who have not yet

received a diagnosis.

3.5 However, throughout the consultationprocess, respondents have repeatedlydescribed their problems in accessingdiagnostic services and in gaining relevantsupport if they are diagnosed.

Diagnosis in our case it took 46 years.I had tried and tried to get a diagnosisbecause we suspected Autism no onewould listen. One psychiatrist even said to me How could a diagnosis help? It wouldnt alter your situation .

I dont want other parents receiving an ASC [autism] diagnosis for their child beingtold to go away and nd out about it, nor do I want people to be continually told that they wont get an assessment or that youdont want to label them.

Local areas taking the initiative3.6 While these kinds of problems are

widespread, many local areas have takenthe initiative and developed diagnosisand assessment services, linked directlyto initial support.

To increase access to diagnosis, theTees, Esk and Wear NHS FoundationTrust has piloted a multi-disciplinaryteam consisting of a consultant clinicalpsychologist, a consultant psychiatristand a speech and language therapist.The team takes referrals from across theTrust area of over-18s who are thoughtto have autism, irrespective of theircognitive ability. Anyone referred willhave already been assessed for mental

health needs: the focus here is onidentifying autism. In just over a year,the team received over 100 referrals.

In Glasgow, an autism resource centreprovides a range of services for adultswith autism and their families or carers,starting with diagnosis. From there,

it offers support and informationabout education, training, housing,employment, leisure and socialopportunities and what support isavailable from health and social care.

In the London Borough of Newhamthe approach is built around providingtraining to partners in the area,including colleges, voluntary groups andcommunity groups, to help identify thosewho may bene t from an assessment.Assessment is made easier to access,with anyone meeting certain criteriaentitled to individual assessment tounderstand their needs. While theassessment is carried out by healthcarepractitioners, much of the signpostingand support is provided by the partners.


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One of the most widely known services isthe Liverpool Asperger Team, funded bythe Liverpool PCT. It was established in2003 in response to ndings from a localsteering group that people with Aspergersyndrome were most likely to fall throughthe gaps in service provision. The multi-disciplinary team of ten staff providesdiagnosis of Asperger syndrome, as wellas direct support through its managedcare pathway. It also works with other

local services, providing direct advice andsupport as well as promoting awarenessof Asperger syndrome.

3.7 We want to build on approaches such asthese to ensure diagnosis is more easilyaccessible, no matter where an individuallives, and that it leads to valuable support

for adults with autism.

Developing a clear, consistentpathway for diagnosis

Building on increased awareness to increasereferrals3.8 We believe the underlying issue around

diagnosis is a lack of awareness of autismamong health and social care staff inparticular. The steps set out in chapter 2,covering training for all health and socialcare staff, will therefore make a signi cantdifference to the likelihood of beingreferred for diagnosis: if staff are moreaware of autism, they will be more likelyto identify potential cases and feel betterequipped to refer.

3.9 However, there also needs to be a cost-effective referral pathway for autismavailable in every area, which GPs, mentalhealth practitioners and those working inthe voluntary sector are aware of and canfollow. The forthcoming NICE guidelinewill set out a model care pathway(s),which will form the foundation forlocal commissioners to develop referraland care pathways in their areas,supported by their strategic health

authority where necessary.

3.10 Best practice shows that in areas where anautism lead is appointed, the pro le of thecondition is raised and services for adultswith autism improve. Because of this, werecommend that local areas appoint alead professional to develop diagnostic

and assessment services for adultswith autism . These professionals will needto work closely with the local specialisedcommissioning group, as specialisedservices for Asperger syndrome and autismare included in the de nition set forspecialised commissioning.

Increasing capacity around diagnosis3.11 By 2013, when this strategy will be

reviewed, we expect there to be a clearpathway to diagnosis in every area. Whilewe recognise that specialist diagnosticservices have proved a highly effectiveway of making diagnosis more accessiblein many areas, it is not expected that adiagnostic team or service will be located inall areas. Instead, the most important stepfor now is that a diagnostic service shouldbe easily accessible for all areas.


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3.12 To achieve this, we also need to examineways to increase capacity around theprocess. We recognise that diagnosis ofautism in adults is often highly complex,particularly where there is little or noinformation regarding early development.However, in other cases, diagnosis may bemore clear-cut: in such cases, a swifter, lessresource-intensive diagnostic process wouldbe of real value. Through the consultationprocess, a number of different models

were suggested, ranging from specialistservices to GP diagnosis to online toolkitsto enabling dedicated nurse practitioners such as those who already work with adultswith autism on a daily basis to diagnose.Future developments could also see theintroduction of a triage arrangementto identify people who need access to a

diagnostic service.

3.13 The feasibility of these different methods isbeing examined by NICE, with the help andinvolvement of NAS. While developingthe forthcoming clinical guideline,NICE will consider how to make thediagnostic process more accessible andconsistent .

Linking diagnosis to a rigorous assessmentof individual need3.14 Diagnosis alone is not enough: the

fundamental change we want to see isthat diagnosis leads to a person-centredassessment of need, in line with the NHSand Community Care Act 1990. Underthis Act, local authorities have a duty toassess a person who may be in need ofcommunity care services either at the

individuals request, or in certain situationswhere the local authority believes careservices may be necessary. Diagnosisof autism should be recognised as areason for assessment.

3.15 Such an assessment, carried out by trainedpractitioners and taking account of thecommunication needs of adults withautism, will be the key to unlocking careservices throughout a persons lifetime.

It will provide a comprehensive view ofthe persons condition and how it affectsthem drawing on the experiences andviews of the person themselves, their familyand carers. This will then be an importantpart of their records in the future, and canbe referred to when necessary to informcare decisions or support applications for

additional services.

3.16 Where the needs assessment showsthat there is a greater requirement forimmediate support ranging from healthor social care to advocacy or skills training there will be a clear description of suchneeds, making it easier for the person ortheir carers to access that support. Forexample, those with additional mentalhealth needs may require further supportfrom local mental health services: theassessment can act as a trigger for this.

3.17 Where the persons needs are low-level, itmay lead to no extra support or servicesat that time. But because the assessmenthas been completed, if the personscircumstances change for example, ifthey become unemployed, experience


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bereavement or come into contact with thecriminal justice system they will be able toseek a reassessment and be better able toaccess support when they need it.

3.18 Equally, where someone has previously hada needs assessment, and is then diagnosedas having autism, this should be recognisedas a potential reason for reassessment.

3.19 It is best practice that diagnosis of

autism is recognised as a catalyst for acarers assessment. Though anyone whoprovides a regular and substantial amountof care for someone aged 18 or over isentitled to request a carers assessment, itshould be offered to them speci cally afterdiagnosis. This is in line with the duty onlocal authorities under the Carers (Equal

Opportunities) Act 2004 to inform carers,in certain circumstances, of their right toan assessment of their needs.

3.20 Linking diagnosis so clearly with assessmentof needs is an important cultural change,reducing the emphasis on diagnosisitself. This should help professionals tofeel con dent in referring someone fordiagnosis, as instead of pathologisingthe condition, the focus is on diagnosisas a step towards needs assessment andproviding the right level of help to the adultwith autism.

3.21 Diagnosis and early assessment can alsoplay a vital role in preventative approaches.Currently, too many adults with autismonly come to the attention of serviceswhen they reach crisis point: a severe

mental health problem, physical illness,homelessness or coming into contact withthe criminal justice system. By recognisingtheir needs earlier, and responding tothem, we hope to prevent adults withautism reaching such crises somethingthat is bene cial not only to them and theirfamilies but also to wider society.

3.22 It must be reiterated that adults withsuspected autism do not need to wait

for diagnosis to request and receive acommunity care assessment: they or theircarers are already entitled to request one ifthey believe they require support. Similarly,local authorities are able to offer anassessment to adults with suspected autismwithout needing formal diagnosis.

Reviewing eligibility criteria for social care3.23 In response to concerns about the way in

which Fair Access to Care Services (FACS)guidance, issued by DH in 2003, has beenimplemented in some local authorities,and in recognition of the vital new policycontext articulated in Putting People First ,the Commission for Social Care Inspection(CSCI) was asked to review the applicationof eligibility criteria for social care and itsimpact on people.

3.24 Following their recommendations,FACS guidance has been revised andwill be published in February 2010. Thisaims to support fair and transparentimplementation of eligibility criteria, withinthe new policy context of personalisationand prevention, and will act as a bridgetowards wider social care reform. It also


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reiterates that people who do not meet theeligibility threshold should still be able toexpect adequate signposting to alternativesources of support.

3.25 Alongside the revised FACS guidance, SCIEis in the process of developing an onlinetraining resource for social care staff toensure that the criteria are applied moreconsistently across the country.

Providing relevant information to adultswith autism and their family or carers at the

point of diagnosis3.26 Diagnosis of autism can be a life-changing

moment for both the person diagnosedand their family. Support for both,therefore, needs to start at that point: notsome weeks after when they can next get

an appointment. In many circumstances,the immediate needs are:

information about autism what it isand how it affects those who have thecondition, and

information about sources of help forthe individual and their family fromtelephone helplines to local voluntarygroups.

3.27 While some adults diagnosed get thiskind of information particularly wherediagnosis is made by a specialist serviceprovider too many do not, and haveto search hard for support. We want tochange this situation and increase thequality and consistency of information

provided to newly diagnosed adults withautism and their families.

3.28 To help local authorities and PCTsdevelop the right kinds of information,the forthcoming statutory guidancewill provide more details of whatinformation adults with autism andtheir family or carers are likely toneed after diagnosis. Based on this,local organisations may wish to develop

shared templates for information. Clearly,it is essential that any such information isprovided in accessible ways, drawing onguidance such as the Of ce for DisabilityIssues (ODI) top tips for accessiblecommunication. 17

3.29 The NHS Choices website can also be a

valuable resource of information for adultswith autism and their families. Its sectionLiving with autism provides generalinformation about autism and diagnosis,as well as links to sources of help:www.nhs.uk/Livewell/Autism/Pages/ Autismhome.aspx

17. See www.odi.gov.uk for more information


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Improving access for adults with autism to the services and support they need to live independently within the community

4. IMPROVING ACCESS FOR ADULTS

WITH AUTISM TO THE SERVICESAND SUPPORT THEY NEED TOLIVE INDEPENDENTLY WITHINTHE COMMUNITY

Equality o access is a undamentalprinciple o UK public services. But itis clear that, too o ten, adults withautism are not currently able to accessthe services or support they need. Thisstrategy sets out to change this andensure that adults with autism are ableto beneft ully rom mainstream public

services by:

reiterating the DDA requirementor services to make reasonable

adjustments or adults with autism

enabling adults with autism to beneftrom personalisation o social care, and

improving transition planning to givepeople with autism the right start intheir adult li e.

Accessing services and support today

4.1 For many adults with autism, mainstream

public services can be largely orcompletely inaccessible. While someof this is due to a lack of understanding

among staff, there are also a number ofother factors. Many people with autism arehypersensitive to light and noise; they havesigni cant dif culties with communication;they struggle with the formats, languageand instructions of forms or standardletters from organisations such as banks orGPs. Therefore when they seek to accessmainstream services, from healthcare

to employment advice and bene ts toeducation, they struggle to cope with theway those services are offered.

Many people with autism experience problems with crowded and noisy environments such as doctors surgeriesand hospital waiting rooms.

4.2 The consequences of this can be seen in avariety of different outcomes.

In healthcare, it is clear that many adultswith autism have become reluctant tosee a GP or other professional. This canmean diagnosis and treatment of often

minor conditions can be delayed tothe point where they become far moredamaging.


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Educational settings which do not makeadjustments for people with autism canmake it harder for adults with autism tocomplete courses and gain quali cations,as well as missing out on the socialaspects of college life.

Dif culties with transport can makeit even harder for adults with autismto access other community servicesand activities, serving to increase their

exclusion.

4.3 While similar stories could be told of otherdisabilities, where people struggle to accessservices and support, it is clear that adultswith autism face particular challenges withusing mainstream public services.

How some services have responded4.4 There are excellent examples of how

services have responded to the needsof adults, making small adjustments tobecome far more accessible. For example,a dentist in Easington in County Durhamschedules appointments for adults withautism at either the beginning or very endof the day, depending on when it is bestfor them, and they dont have to wait inthe waiting room. Some adults with autismgo for a preliminary visit to be shown whata dental surgery is like and what noisesthey will hear. Individual doctors both GPsand in hospitals have come in for praise,as have some DEAs.

4.5 Many parents told the consultation of howcolleges had taken account of the needs ofstudents with autism:

Our local college South Downs inWaterlooville has been excellent. They havea disability committee organised by thedisability team, run by the students and even have an Asperger specialist. They havea quiet room for any disabled person touse when necessary. They have an excellent no bullying policy, and all the tutors my daughter has been taught by have beenwonderfully understanding and supportive.

A wonderful example for other colleges to

follow.

4.6 The challenge ahead is to ensure thatexamples like these become the norm.

Ensuring that adults with autism canaccess the services and support theyneed

Requiring services to make reasonableadjustments for adults with autism4.7 Since December 2006, under the disability

equality duty, all public sector organisationsare required to make reasonableadjustments to services to ensure theyare accessible for disabled people. Thisduty includes making adjustments forpeople with autism. Too often, this aspectof the duty has been overlooked, withthe focus mostly on physical and sensoryimpairments.

4.8 The Standard Contract for Mental Healthand Learning Disabilities explicitly requiresservice speci cations, and therefore serviceproviders, to demonstrate how reasonableadjustments for adults with autismare made.


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Improving access for adults with autism to the services and support they need to live independently within the community

4.9 While it will remain up to individualorganisations to decide on the adjustmentsthat they can make, potential areas include:

premises for example, taking accountof hypersensitivities and providing quietor lower-light areas within educationalor healthcare settings, prisons andpolice cells

processes such as scheduling

appointments at less busy times,allocating extra time to adults withautism and being exible aboutcommunication methods (i.e. lessreliance on telephone-based services)

communications including avoidingambiguous questions, not pressurising

adults with autism in conversation andbeing aware of sensitivity to touch,ensuring essential documents and formsare available in accessible formats inparticular, easy read and formats thattake account of sensory issues in theirchoice of colours, and

planning and preparation for example,offering opportunities for adults withautism to visit settings in advance tofamiliarise themselves with what toexpect, such as visiting a court priorto giving evidence.

4.10 DH has already committed to deliveringguidance for mental health andlearning disability services to indicatesome of the kinds of adjustments thatmight usefully be made, from physical

adjustments to premises to improvingthe ways those delivering servicescommunicate with adults with autism. This guidance will be available to allpublic services, and will draw on examplesof the kinds of adjustments that have beenmade in health and social care settings,as well as on guidance such as the ODIstop tips for accessible communication.We will also work with adults with autismand autism representative groups in

developing this guidance.

4.11 DWP has also underlined its commitmentto making adjustments for adults withautism using Jobcentre Plus services. Aswell as making any required reasonableadjustments such as making use of themost suitable environment or premises

for conducting work focused interviews DWP will also ensure Jobcentre Plusadvisers are aware both of the needto make suitable adjustments foradults with autism and of the kinds ofadjustments that may be bene cial .

4.12 Within the justice sector, one of the mostimportant steps is to make sure that adultswith autism have access to the supportthey need whether as victims, witnessesor perpetrators of crimes. Teams thatwork within criminal justice agencies,such as the Criminal Justice Liaison Teams,should ensure that they have access to theexpertise to support adults with autism.Developing pathways through the criminal

justice system for adults with autism willhelp identify key players locally who may


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be required to work alongside criminal justice staff.

Enabling adults with autism to bene t frompersonalisation of social care4.13 The goal of social care today is to deliver

personalised services that give eachindividual the right support to live a moreful lling life. We are committed to makingthis approach work for adults with autism.

4.14 As well as giving people more choice overthe care and support services they access,personalisation also encourages a culture ofinnovation in terms of service developmentand delivery. It acts as a catalyst for localpartners to work together to respondto individual needs, creating innovativepackages of care and support that often go

beyond traditional care services to includedifferent forms of support that make areal difference.

4.15 We recognise that adults with autism willneed additional support to make choicesabout their care, and that having choiceis only of value when there are suitableservices and support available to choosefrom within the local area. Therefore it willtake some time for personalisation to beof bene t to all adults with autism thatare eligible for social care. However, inmany areas the process is underway, andstatutory guidance will give examples ofhow this is working.

4.16 Personal budgets are an integral part ofpersonalisation, giving adults more control

over the care services they receive, in linewith their assessed needs.

4.17 Adults with autism are eligible forpersonal budgets and direct payments,but indications suggest that, in someareas, they are not being offered them.We therefore reiterate their eligibility, andrecommend that for those that need andwant them, adults with autism are ableto access personal budgets and direct

payments, in li

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