Progress Report on Think Autism:

the updated strategy for adults

with autism in England.

January 2016

Title: Progress Report on Think Autism: the updated strategy for adults with
autism in England
Author: Social Care , Local Government and Care Partnership Directorate,
Department of Health
Document Purpose: Policy
Publication date: January 2016
Target audience: Local Authority CEs, Clinical Commissioning Group CEs,
NHS Trust CEs, Care Trust CEs, Foundation Trust CEs, Health and Wellbeing
Boards, Directors of Public Health, Medical Directors, Directors of Nursing,
Director of Adults Social Services, NHS Trust Board Chairs, Special Health
Authority CEs, Allied Health Professionals, GPs, Communications Leads,
Emergency Care Leads, Directors of Childrens Social Services, Youth
offending services, Police, NOMS and wider criminal justice system,
Coroners, Royal Colleges, Transport bodies, Third sector organisations,
Health Education England, Higher Education Institutions and Universities
Contact details:
Write to: Department of Health, Social Care, Local Government and Care
Partnership Directorate, Area 313A, 3rd Floor, Richmond House, London
SW1P 2NS
or
e-mail: [email protected]
This document can be accessed at www.Gov.UK

Crown copyright 2016

You may re-use this information (excluding
logos) free of charge in any format or
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To view this licence, visit
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open-government-licence/ or e-mail:
[email protected].
Where we have identified any third party
copyright information you will need to obtain
permission from the copyright holders
concerned.
This document is also available in easy read.

Contents
Foreword

Introduction

About autism

Sections
1. Delivering quality care to those
who need it and making a positive
impact on peoples health in an
efficient way
7
Progress and planning
8
Training
16
Transition from childhood to
adulthood
22
2. A core part of health and
care delivery
Diagnosis

37

3. Making sure that people have

good experience of care and services
Innovation, awareness and
technology
39
Transforming care for people who
have autism
45
4. Preventing people from having
episodes of crisis
Supporting people with autism
5. Joining up better the NHS, social
care and other local partners
Employment for adults with autism
Contact with the criminal justice
system

48

59
64

Appendix A
Actions from Think Autism (2014)

70

Appendix B
Autism Innovation Fund projects

75

Appendix C
Abbreviations

82

Appendix D
Autism information collected or planned 84
Appendix E
Progress Report on Think Autism:
Actions going forward

88

Foreword

Foreword

Just over 18 months ago you were asked

to Think Autism. And with over half a million
people in England estimated to have
autism this was done for a very good
reason. Your organisations and services
will be coming into contact with people on
the autistic spectrum on a daily basis. By
engaging with those people effectively you
can ensure that they do not miss out on
accessing services and support, and by
doing so you can have a positive influence
on their mental and physical health.
To help with local implementation and
planning it was right that many of the
actions in Think Autism were for
government departments and agencies to
play their part in policy development and
improving operational processes, and so
help you in your important work. Think
Autism followed the review of the 2010
autism strategy Fulfilling and Rewarding
Lives, and was published in April 2014. It
set out an updated programme of action to
deliver the aims of the Autism Act. This
report summarises progress since then
and looks at how this work will go forward
over the next 18 months with a number of
refreshed actions building on progress
made. A list of the original actions is found
at Appendix A.
Think Autism continued to highlight the role
that local authorities and NHS bodies
should have in planning services for adults
with autism. It placed greater emphasis on
involvement and awareness within the local
community and on ways to look differently
at support and engagement. It also moved
the original vision of the strategy on,
including an increased focus on areas such

as young people, criminal justice and

employment. The ethos of prevention,
personalisation and opportunity runs
through the revised strategy.
Local authorities and the NHS need to
work in collaboration with their partners to
continue to implement the autism strategy.
Crucially, at the core of Think Autism,
people with autism need to have access to
a clear pathway to diagnosis and know that
this pathway is aligned with care and
support assessments, and that there is
post-diagnostic support available even if
the person does not meet social care
support criteria. Commissioning decisions
need to be based on knowledge and
awareness of autism, the needs of the local
population, and informed by people with
autism and their families.
Government policy is assisting people with
autism on the journey to reach their
potential, to have full lives and to live as
independently as possible. It is also right
that we link work in autism to the
Governments key priorities, as after all the
mark of a civilised society is the support
that is offered to vulnerable people to
provide them with opportunities and
improve their lives.
The new actions that are set out include
those that:

underpin successful implementation of

the major reforms to the Special
Educational Needs and Disability
system in improving support for
children and young people, including a
greater focus on preparing for

Progress Report on Think Autism: the updated strategy for adults with autism in England

adulthood and extending support from

025 years old;

can better focus support to help with

employment opportunities, both to the
job applicant and the potential
employer, at interview and if successful
once in work;

achieve better awareness of autism

within the criminal justice system, if the
person who has autism is a victim, a
witness or an alleged perpetrator of a
crime;

will allow better reporting of progress

and the use of information, to help
commissioners plan services and for
people with autism and their families to
see what is happening in their local
areas.

Failure to provide adequate services or

make reasonable adjustments can have
costly consequences for people with
autism and for services. At worst it can
mean that individuals fall into crisis
situations and then require expensive

Alistair Burt
Minister for
Community and
Social Care

Justin Tomlinson
Minister for
Disabled People

mental health services or residential care,

do not fulfil their potential in employment, or
end up losing their liberty if they come into
contact with the police and the courts. A
number of studies have estimated the
costs of autism and the National Autism
Project supported by the Shirley
Foundation is currently looking at this issue.
The Department of Health is also working
with University College London to look at
evidence of cost-effective approaches for
supporting people with autism. Awareness
work by the Autism Alliance UK is also
doing much to increase understanding of
autism within parts of the public and private
sectors. Other autistic charities are also
playing their part with similar work. Our aim
is to support the better joining up of work in
this area.
The refreshing of the actions in Think Autism
should ensure that momentum is not lost
over the next 18 months. As we go forward
with national policy and local plans it is
important that we continue to Think Autism.

Edward Timpson
Minister for Children
and Families

Andrew Selous
Minister for Prisons,
Probation,
Rehabilitation and
Sentencing

Introduction

Introduction

The focus of the work outlined in Think

Autism,1 the update to the 2010 autism
strategy,2 was to improve outcomes for
people with autism by developing policies
that helped local implementation. It
crossed many government departments
and agencies: from health and social care
to employment, education and criminal
justice.
This progress report sets autism and the
aims of Think Autism in the context of
government reform to:

The report sets out progress against each

of the 33 Think Autism actions. They are
referred to within the text and linked to the
list of actions set out in Appendix A.
Where appropriate, further actions for the
coming 18 months have been agreed to
continue momentum and they are set out
in each section and at Appendix E.
Within each section, progress has also
been highlighted from the latest local
authority area autism self-assessment
exercise. Each section is introduced by
what people with autism said when the
autism strategy was being reviewed during
2013/14, to remind the Government and
local services that the views of the autism
community should be at the centre of all
that we do. Case studies, including
summaries of Autism Innovation Fund
projects, are also included to illustrate good
practice and innovative approaches.

deliver quality care to those who need it

and making a positive impact on
peoples health in an efficient way;

be a core part of health and care

delivery;

make sure that people have a good

experience of care and services;

prevent people from having episodes of

crisis;

join up better the NHS and social care,

and other local partners.

1.

Think Autism: Fulfilling and Rewarding Lives, the strategy for adults with autism in England: an update
(November 2014). Available at: www.gov.uk/government/publications/think-autism-an-update-to-the
government-adult-autism-strategy
Fulfilling and Rewarding Lives: The strategy for adults with autism in England (March 2010). Available at:
http://webarchive.nationalarchives.gov.uk/20130107105354/http:/www.dh.gov.uk/en/
Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_113369

2.

Progress Report on Think Autism: the updated strategy for adults with autism in England

About autism
Throughout this progress report, unless otherwise specified, the term autism is used
to refer to all diagnoses on the autism spectrum, including Asperger syndrome, highfunctioning autism, Kanner syndrome3 or classic autism.
Autism occurs early in a persons development. Someone with autism can show
marked difficulties with social communication, social interaction and social
imagination. They may be preoccupied with a particular subject or interest. Autism is
developmental in nature and is not a mental illnesses or a learning disability. However,
people with autism may have additional or related problems, which frequently include
anxiety. These may be related to social factors associated with frustration or
communication problems or to patterns of thought and behaviour that are focused or
literal in nature.
A person with autism may also have sensory and motor difficulties, including sensitivity
to light, sound, touch and balance. These difficulties may result in a range of regulatory
behaviours, including rocking, self-injury, and avoidance such as running away. Often
these are coping mechanisms. There can also be a repetitive or compulsive element to
much of the behaviour of people with autism. The person may appear to be choosing
to act in a particular way, but their behaviour may be distressing even to themselves.
However, these behaviours can also be an important self-calming mechanism and
should not be stopped or discouraged or seen as a deficit.
Autism is known as a spectrum condition, both because of the range of difficulties
that affect adults with autism, and the way that these present in different people. For
example, Asperger syndrome is a form of autism. People with Asperger syndrome
typically have fewer problems with speaking than others on the autism spectrum, but
they do still have significant difficulties with communication that can be masked by
their ability to speak fluently. They are also often of average or above average
intelligence.

3.

Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child 2:217250. Available at:
http://simonsfoundation.s3.amazonaws.com/share/071207-leo-kanner-autistic-affective-contact.pdf

1. Delivering quality care to those who need it and making a positive impact on peoples health in an efficient way

1. Delivering quality care to those who need it

and making a positive impact on peoples health

in an efficient way
1.1 Think Autism was about supporting
local authorities and the NHS to overcome
challenges and barriers to make a
difference for people with autism. This
section looks at progress made, the role of
planning at a local level and the importance
of staff being trained about and aware of
autism. The extensive reforms to the
Special Educational Needs and Disability
(SEND) system for 025-year-olds4 show
how resources, if used effectively, will make
a positive impact on people with autism
throughout their lives.

National Autism Programme Board

1.2 The cross-government National
Autism Programme Board has continued
to oversee progress on the strategy and will

4.
5.

continue to do so. New self-advocates and

family carer members have joined the
board and its full membership can be
viewed at [Think Autism Action 2].5
1.3 Going forward the board will be jointly
chaired by a person who has autism or is a
carer for a person with autism. The board
has received regular reports on progress
against the actions in Think Autism and this
report is a summary of progress so far
[Think Autism Action 3]. It is central to the
autism strategy that all actions, nationally
and locally, should be taken forward in a
co-productive way that involves and
engages people with autism and their
families and carers as partners, respecting
the insight and expertise that their
experience and lives bring.

Special Educational Needs and Disability Code of Practice: 0 to 25 years (January 2015). Available at:
www.gov.uk/government/publications/send-code-of-practice-0-to-25
Available at: www.gov.uk/government/groups/aapb#membership

Progress Report on Think Autism: the updated strategy for adults with autism in England

Progress and planning

What people with autism want (as
heard during the review of the 2010
strategy)

Data about people with autism

accessing health and social care
services Some 11 (7%) local
authorities reported that they
routinely collect and share data
about all health and social care use
by people with autism; while 123
(81%) reported that they were
working towards this.

A total of 125 (82%) local authorities

reported that they collect data on
the number of people with autism
eligible for social care.

Some 90 (59%) local authorities

reported that corresponding clinical
commissioning groups (CCGs)
were fully involved in planning and
implementation of the autism
strategy.

A total of 59 (39%) local authorities

gave themselves the highest rating
for engaging people with autism
and their carers fully in the planning
and implementation of the autism
strategy.

Some 12 (8%) local authorities

reported having a clear policy and
widely implemented policy for
making reasonable adjustments to
council-provided services to
improve access and support for
people with autism; while 19 (13%)
reported evidence of
implementation of reasonable
adjustments to other publicly or
commercially provided public
services.

I want my views and aspirations to be

taken into account when decisions are
made in my local area. I want to know
whether my local area is doing as well
as others.
I want autism to be included in local
strategic needs assessments so that
person-centred local health, care and
support services, based on good
information about local needs, are
available for people with autism.
Progress indicated in the 2014 selfassessment exercise

Joint Strategic Needs Assessment

(JSNA) A majority of local
authorities reported including
autism in their local JSNA (101;
66%) and commissioning plans
(117; 77%), with 92 (61%) reporting
that the needs of children and
young people with autism were
specifically considered. Public
Health Englands Learning
Disabilities Observatory team
analyse the content of JSNAs
annually to monitor inclusion of
people with learning disabilities.
This year they will also report on
coverage of adults and children
with autism.

1. Delivering quality care to those who need it and making a positive impact on peoples health in an efficient way

Autism statutory guidance

1.4 Updated autism statutory guidance
was issued in March 20156 following a
period of consultation during November
and December 2014.7 It supports Think
Autism by giving guidance to local
authorities and NHS bodies about the
exercise, respectively, of their social care
and health service functions, for the
purpose of securing the implementation of
the strategy and its update [Think Autism
Action 1]. The statutory guidance builds on
progress made over the last five years and
sets out the expectations for local areas so
they can continue to develop services and
support in ways that reflect the assessed
needs and priorities of their communities.
1.5 Additionally, as well as reflecting the
key legislation and health and social care
reforms since 2010, the guidance puts
greater emphasis on involvement and
awareness within local communities.

Wider legislative changes

1.6 Recent legislative changes will also
enable local services to support people
with autism and their families better, and
they are also outlined in this statutory
guidance. The Care Act 20148 places a
strong emphasis on preventing and
delaying needs for care and support by
6.

making sure that there is appropriate

information and advice for people, support
for carers, and promoting integration
between social care and health care
services. It also places a duty on local
authorities to promote a persons well
being when carrying out any of their care
and support functions in respect of that
person. This is explored in more detail in
section 4 of this report. The Children and
Families Act 20149 will help to support
young people in preparing for adulthood
and this is outlined in more detail later in
this section.

The national autism selfassessment exercise

1.7 There have been two previous selfassessment exercises undertaken by local
authorities and their social care, health and
other partners. A baseline assessment was
carried out in 2011,10 with a follow-up
assessment completed in 2013.11 The selfassessments enable adults with autism,
their families and carers, and autism
representative groups to hold services to
account and assess whether changes are
taking place. The self-assessment exercise
enables comparison and benchmarking
across local authority areas and supports
the identification and planning for areas
where further action is required.

Statutory Guidance for Local Authorities and NHS Organisations to Support Implementation of the Adult
Autism Strategy (March 2015). Available at: www.gov.uk/government/uploads/system/uploads/attachment_
data/file/422338/autism-guidance.pdf
7. The Government Response to the Consultation on Revised Statutory Guidance to Implement the Strategy for
Adults with Autism in England (March 2015). Available at: www.gov.uk/government/uploads/system/uploads/
attachment_data/file/417889/Government_Response.pdf
8. Care Act 2014. Available at: www.legislation.gov.uk/ukpga/2014/23/contents/enacted/data.htm
9. Children and Families Act 2014. Available at: www.legislation.gov.uk/ukpga/2014/6/contents/enacted/data.htm
10. Learning Disabilities Observatory (November 2012). Autism Self-Assessment 2011: Issues from local
authorities. Available at: www.improvinghealthandlives.org.uk/gsf.php5?f=16323&fv=17474
11. Public Health England (August 2014). Autism Self-Assessment Exercise 2013: Detailed report and thematic
analyses. Available at: www.improvinghealthandlives.org.uk/gsf.php5?f=312684&fv=20380

10

Progress Report on Think Autism: the updated strategy for adults with autism in England

1.8 The third self-assessment protocol

was published in December 2014 for
completion by March 2015 [Think Autism
Action 7].12 It included 70 substantive
questions, including questions about
people who care for people with autism
[Think Autism Action 22]. The principal
questions (24 of them) asked local
authorities to rate their progress as red,
amber or green (RAG) according to a set of
specified criteria. More evidence was
required to score green or amber this time.
A further 15 questions asked for numbers,
particularly about adults passing through
diagnostic services and the waiting times
for this. There was also an opportunity to
provide up to five accounts of personal
experiences to illustrate the answers. A
total of 21 RAG or yes/no questions were
either identical (10 questions) or very similar
(11 questions) to those in the 2013 selfassessment exercise. All but three local
authorities submitted returns.

1.10 Public Health England (PHE) has

also published:

a full report providing details of

responses to each question, with maps
and charts to show the patterns of
progress;

details of the personal experiences

submitted;

an online interactive display of the

results;

a full listing of all responses by all local

authorities;

a spreadsheet version of all the data to

facilitate comparisons.

1.11 The results are available on Autism

West Midlands Autism Connect website13
in an easily accessible format allowing
independent comments [Think Autism
Action 8].

1.9 The largest number of local authorities

rated themselves strong on care and
support issues followed by employment.
The largest number rated themselves weak
on housing and accommodation.
Section

Questions

Green

Amber

Red

Planning

29%

55%

11%

Training

28%

60%

12%

Diagnosis

30%

43%

25%

Care/support

45%

47%

7%

Housing/accommodation

8%

45%

45%

Employment

33%

59%

7%

Criminal justice system

16%

64%

17%

Some local authorities did not answer every question.

12. Available at: www.improvinghealthandlives.org.uk/projects/autsaf201415
13. See: https://autism-connect.org.uk/

1. Delivering quality care to those who need it and making a positive impact on peoples health in an efficient way

Autism Connect

autism-connect.org.uk

This website was originally developed

with funding from the Department for
Education and was expanded to have
a national focus with Autism Innovation
project funding. Through Autism
Connect it is possible to connect with
like-minded people, share experiences,
and ask and answer questions within
the autism community. Additionally,
users can find, rate and review local
services as well as autism friendly
venues. Also referenced are many free
information sheets on aspects of
autism. The events and calendar
section enables users to find and add
details of local events and activities.
1.12 Good approaches and practice
locally will also be promoted online, such
as that in Lincolnshire.
Rob Barber, Commissioning
Officer, Specialist Adult Services at
Lincolnshire County Council, sets
out recent developments:
In a collaboration between Lincolnshire
County Council, the four Lincolnshire
CCGs and members of the
Lincolnshire Autism Partnership, we
launched our All-Age Autism Strategy
for Lincolnshire on 2 April 2015, to
coincide with World Autism Awareness
Day. At the beginning of 2015 we
re-launched our Autism Partnership
Board in readiness for the release of
our strategy. This included the
introduction of reasonable
adjustments, such as communication
cards, to ensure that meetings are
more accessible for people with

autism. The partnership is key to

helping drive the strategy forward, so
we needed to ensure that we had
appropriate stakeholders on board
covering services for children and
young people, as well as adults. A
number of new working groups have
been established and we have had an
influx of people on the spectrum who
are now heavily involved in the work we
are doing, which is great.
Additionally, in December 2014, we
appointed an autism expert by
experience to work across health and
social care within our Joint
Commissioning Team. This has been a
crucial step to ensure that somebody
with lived experience of autism is at the
heart of our commissioning work and
can help inform and educate us, as
well as be directly involved in service
design and development.
For further information contact:

autism.partnership@lincolnshire.

gov.uk

Data
1.13 Good-quality data is integral to the
successful development and
implementation of autism strategies and
commissioning. Local authorities and their
health and wellbeing boards, CCGs and
other partners need to have access to as
comprehensive data as possible on
prevalence and need. But gathering data
on the number of people with autism and
their needs can be challenging. Health and
adult social care services are currently
likely to be aware of only a proportion of
people with autism.

11

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Progress Report on Think Autism: the updated strategy for adults with autism in England

1.14 Local estimates of prevalence can be

calculated from national data using PANSI14
(Projecting Adult Needs and Service
Information). This database enables
projections on the possible impact of
demography and certain conditions on
local populations, and allows local
authorities to estimate unmet need.
Estimates for children of school age were
produced by the Learning Disabilities
Observatory in 2011.15
1.15 Having agreed definitions of autism
will improve data capture and analysis. As
GPs are often the first point of contact for
adults with autism, both before and after
diagnosis, the Department of Health (DH) is
working with NHS England and with the
Royal College of General Practitioners
(RCGP) through their autism clinical priority
programme to explore the feasibility of
introducing a Read Code for Autism [Think
Autism Action 18].16 The introduction of a
Read Code for Autism may improve the
quality of gathered data and lead to more
effective local planning and commissioning
of services in relation to need. In addition,
the RCGP has developed a standard
format letter to be sent to GPs by
diagnostic services that has also been
approved by the Royal College of
Psychiatrists (RCP) and uses a limited
number of codes.

1.16 From April 2014, local authorities

started to collect Short and Long Term
(SALT)17 support data for users and carers
that records their primary reason for
support. Certain health conditions,
including autism, are recorded in parts of
the collection. This enhanced data set was
published for the first time in October 2015
and will enable DH to commence analysis
of the data to inform future data collections.
1.17 DH, in partnership with PHE,
established a data and information working
group that includes the Department for
Work and Pensions (DWP), the
Department for Education (DfE), the
Ministry of Justice (MoJ), the Health and
Social Care Information Centre (HSCIC)
and the National Autistic Society (NAS),
with a remit to compile a list of available
data sources on autism (at Appendix D)
for local authorities. The group will set out
its programme going forward by January
2016 [Think Autism Action 19]. As part of
this work, the HSCIC will consider the
longer-term case for producing a report on
autism in its Focus On series detailing
information and statistics on autism.

14. See: www.pansi.org.uk/

15. Learning Disabilities Observatory (May 2012). People with Learning Disabilities in England 2011. Available at:
www.improvinghealthandlives.org.uk/publications/1063/People_with_Learning_Disabilities_in_England_2011
16. NHS Information Centre (February 2010). Access to Healthcare for People with Learning Disabilities.
Available at: www.hscic.gov.uk/catalogue/PUB08591/acc-heal-care-peop-lear-disa-rep.pdf
17. HSCIC (September 2014). Short and Long Term (SALT) Return: Guidance. Available at:
www.hscic.gov.uk/media/12020/Guidance-supporting-SALT-collection/pdf/SALT_Guidance_v1_5.pdf

1. Delivering quality care to those who need it and making a positive impact on peoples health in an efficient way

Good practice on types of data to collect

To achieve the most accurate local information about the numbers of adults with
autism and their needs, good practice suggests including the number of people with
autism:

from Black Asian Minority Ethnic communities;

living at home on their own, or with family members, or with older family carers
and not receiving health or social care services.

by gender (men, women or other), including transgender;

in employment;
likely to need employment support to gain or stay in work;
placed in the area (and funded) by other local authorities;
placed out of area by local authorities and/or NHS bodies;
in hospital or living in other NHS-funded accommodation;
resettled from long-stay beds or NHS residential campuses to community
provision;

Key professionals to engage in this evidence gathering are:

social care professionals;

Jobcentre managers;

GPs (who could identify numbers of people on their practice list who have an
autism diagnosis and could also follow up with diagnostic services to find out
whether their patients have been given an autism diagnosis if this information has
not come back after referral);
employment support providers;
local autism groups and branches of national autism third-sector organisations.

13

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Progress Report on Think Autism: the updated strategy for adults with autism in England

Information-sharing agreement Leicester, Leicestershire and Rutland

Jane Forte, Commissioning Manager for Mental Health, Learning Disabilities
and Autism at Leicester City Council, outlines arrangements put in place
locally:
As three local authorities, three CCGs, two local hospital trusts and specialised
commissioning services, we already work closely on Transforming Care and the
Learning Disability and Autism self-assessment exercises. We also have joint delivery
action plans that link with Better Care Together.
The weak link in this work was the sourcing and gathering of accurate data, having
conversations when you knew who you were talking about but could not mention the
name, or two people with the same initials get mixed up. We therefore looked at what
information was required, why and from whom, so we could justify the reasoning
behind sharing personal data. These are the questions, which with their answers are
the basis for the agreement:

What is the legal basis the laws that let you to share this information?

What happens if there is a major security breach?

Who are the responsible people in each organisation?

Is there consent?
Can Information be shared without consent?
Are there issues concerning a lack of capacity to give consent?
Are there issues under the Data Protection Act 1998?
Do we need to consider the Human Rights Act 1998?
What information does each signatory need to share?
Who is the data controller for this information?
Indemnity required?
How are we going to keep information accurate?
How long will the information be kept?
How will we share and keep information secure?
What if we want to use the information for something else?
What do we do if information is lost, disclosed or misused?
How will we check whether our colleagues are complying with this agreement and
if it is still current?
What do we do if we are asked to disclose information that we receive under this
information-sharing agreement?

1. Delivering quality care to those who need it and making a positive impact on peoples health in an efficient way

The practical issues of sharing and destruction methods, and security requirements,
were also to be agreed.
We are fortunate in the local authorities having coterminous boundaries with the three
CCGs and the two hospital trusts. One of the CCGs takes the lead in collating the
Transforming Care data. In the City of Leicester, GP data is on one system that is
accessible to the CCG, whereas Leicestershire County and Rutland have different
systems, which do not link. Childrens services are included in the agreement but,
again, have different systems and information streams. These are some of the
ongoing issues, currently being worked on. Work is still being undertaken with the
police, prisons and probation service, as they are not yet signed up. The agreement
is currently under review and will be amended to reflect changes since it was drawn
up e.g. Winterbourne View changing to Transforming Care. There are gaps in
information in both the Learning Disabilities and Autism self- assessments where we
need more robust data and potentially need to work with partners to ensure that they
are collecting data in a way that is useful to all parties involved.
The information-sharing agreement has made a tremendous difference in our ability to
gather and cross reference data for the most recent self-assessment exercises and
therefore provide evidence to support the development of services.
For further information contact: [email protected]

Actions going forward

Progress Report (PR) Action 1. Public Health Englands Learning Disabilities
Observatory team to undertake an analysis of Joint Strategic Needs Assessments to
identify the information they include about adults and children with autism and issue a
report. By end of January 2016.
Progress Report (PR) Action 2. The Autism Programme Board to be jointly chaired
by a person who has autism or is a carer for a person with autism. By February 2016.
Progress Report (PR) Action 3. DH to work with partners so that regional
workshops can be held with local authorities, the NHS and other key stakeholders to
support the implementation of the new statutory guidance, consider progress made
and encourage regular network meetings to promote best practice and share
information. From December 2015 to March 2016.
Progress Report (PR) Action 4. The next Autism self-assessment exercise to be
undertaken by PHE from April 2016.
Progress Report (PR) Action 5. The PHE and DH led data and information working
group to set out its work programme for going forward by end of January 2016.

15

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Progress Report on Think Autism: the updated strategy for adults with autism in England

Training
What people with autism want
I want staff in health and social care
services to understand that I have
autism and how this affects me.
Progress indicated in the 2014 selfassessment exercise
A total of 82 (54%) local authorities
reported having a multi-agency
autism training plan, with 60 (39%)
reporting that CCGs, primary and
secondary care practitioners are
involved in this.
A total of 109 (72%) local authorities
reported involvement of the police
in autism training.
Some 38 (25%) local authorities
reported involvement of local court
services, and 69 (45%) reported
involvement of the local probation
service.
A total of 44 (29%) local authorities
scored themselves as green on
whether autism awareness training
has been made available to all staff
working in health and social care,
including staff in childrens services.
This included having a
comprehensive range of local autism
training that meets NICE (National
Institute for Health and Care
Excellence) guidelines and having a
published autism training plan.
Some 38 (25%) local authority
areas reported that at least three
quarters of their staff who carry out
statutory assessments have
attended specialist autism training.

Local authorities and the NHS

1.18 In line with the 2010 and 2015
statutory guidance, local authorities and
the NHS should be providing general
autism awareness training to all frontline
staff in contact with adults with autism, so
that staff are able to identify potential signs
of autism and understand how to make
reasonable adjustments in their behaviour
and communication. In addition to this,
local authorities are expected to have
made good progress on developing and
providing specialist training for those in
roles that have a direct impact on, and
make decisions about, the lives of adults
with autism, including those conducting
needs assessments.
1.19 The regulations supporting the
Care Act 2014 require those undertaking
an assessment to have suitable skills,
knowledge and competence in the
assessment they are undertaking, such
as autism. Where assessors do not
have relevant experience of the
condition, they should contact someone
who does.
1.20 Health Education Englands
(HEE) role is to ensure that the NHS
workforce has the right numbers, skills,
values and behaviours to meet the NHSs
needs of today and tomorrow. As part of its
2014/15 mandate with the Government,18
HEE has been required to work with the
Royal Colleges and other stakeholders to
focus on supporting autism awareness
training.
1.21 In partnership with Skills for Health
(SFH) and Skills for Care (SFC), HEE has
scoped, reviewed and collated a suite of

18. Department of Health (May 2014). Delivering High Quality, Effective, Compassionate Care: Developing the
right people with the right skills and the right values a mandate from the Government to Health Education
England: April 2014 to March 2015. Available at: www.gov.uk/government/uploads/system/uploads/
attachment_data/file/310170/DH_HEE_Mandate.pdf

1. Delivering quality care to those who need it and making a positive impact on peoples health in an efficient way

existing autism awareness resources.19

These resources will enable the workforce
to understand the needs of adults with
autism, to respond appropriately or to make
necessary adjustments. The resources
were made available via the HEE website in
June 2015 and launched at a national
learning disability awareness-raising event
in July 2015. A programme wide
communication strategy has also been
completed.
1.22 Funding from DH has been made
available for HEE to work in partnership
with SFC and SFH to develop positive
behavioural support and autism training to
health and social care providers. Funding
has also been made available to facilitate
the discharge from and help avoid
admission into inappropriate hospital
settings of individuals with a learning
disability, autism, and behaviour that
challenges. This will, for instance, include
funding a unique approach to positive
behaviour support involving people who
work with, or are carers for, an individual
with a learning disability, autism, and
behaviour that challenges. It will be
implemented across Transforming Care
fast-track sites early in 2016.
1.23 The mental health and learning
disability programme is taking forward
parity of practice that focuses on physical
health, mental health and intellectual
disability. At times, individuals with autism
display challenging behaviour. Education
and training materials are being developed
to ensure that the workforce is able to
apply mindfulness approaches safely and

reflectively, and make adjustments in

practice where clinically indicated. A
revised learning disability skills and
competency framework will address the
needs of adults with autism. This will be
complete by March 2016.
1.24 A long-term piece of work for HEE is
to work with the Royal Colleges to develop
and incorporate awareness, knowledge
and skills for NHS health professionals in
recognised areas of health, including
autism, mental illness, physical illness and
social support needs across all
programmes. Work will commence in
December 2015 and continue into 2018.
1.25 The Health and Care Professions
Council (HCPC, formerly the Health
Professions Council) is a statutory regulator
of health and care professionals in the UK.
It does this by setting and maintaining
standards of proficiency and conduct for
the professions it regulates. Its key
functions include approving education and
training programmes that health and care
professionals including chiropodists,
podiatrists, dietitians, hearing aid
dispensers, occupational therapists,
paramedics and physiotherapists should
complete before they can register with the
HCPC; and maintaining and publishing a
register of health and care providers who
meet predetermined professional
requirements and standards of practice.
DH will discuss with the HCPC to
determine the element of autism
awareness training that health and care
professionals should meet within the
education and training programmes.

19. Available at: https://hee.nhs.uk/work-programmes/mental-health-and-learning-disability/learning-disability/

education-and-training-for-the-whole-workforce/autism-awareness-learning-resources/

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Progress Report on Think Autism: the updated strategy for adults with autism in England

Raising the level of autism

awareness across government
1.26 Guidance and e-learning products
developed as a result of the original autism
strategy were publicised across other
government departments by Una OBrien,
the DHs most senior civil servant [Think
Autism Action 12]. Other government
departments shared their autism activity.
Some 16 valued the importance of autism
awareness, welcomed the work that had
been undertaken to raise awareness across
government, and shared the guidance and
e-learning products with their departments
disability network groups. In addition, some
made available the links to online training
resources via their intranets to raise
awareness among staff.
1.27 Departments have put in place
support for their staff who are on the
autism spectrum along with wider staff
awareness training. Some have run staff
awareness sessions on the themes of
neurodiversity, the autistic spectrum and
attention deficit hyperactivity disorder
(ADHD); have provided additional training
for managers of staff with autism; or have
an autism buddy group as part of their
disability support network. Other
departments have requested support from
DH to disseminate and promote autism
awareness training and to be made aware
of developments with e-learning training
products.

Work experience case study

The Office for National Statistics was
approached by a third-sector autism
charity who asked if they would
consider providing an eight-week work
experience placement for a young man
with autism who had expressed a
specific interest in working for the
organisation. This individual had
achieved a degree in Mathematics and
was keen to gain some experience
within the research/statistics field in the
hope that it would stand him in good
stead for permanent employment. The
placement was very successful and
paved the way to employment, which
was obtained through fair and open
competition. The exercise was also an
important learning experience for those
involved with managing, mentoring and
working alongside someone with
autism.

Upgrades of autism e-learning

training and awareness tools
1.28 Following a review by John Simpson
then a self-advocate member of the
Autism Programme Board of the
e-learning training funded by DH under the
original 2010 autism strategy, funding was
made available to update the e-learning
training [Think Autism Action 21] to eight
organisations that had developed their
training packages in 2010/11.
1.29 These organisations were the British
Psychological Society, University of Oxford,
Royal College of GPs, Royal College of
Nursing, Skills for Health, Skills for Care,
Social Care Institute for Excellence, and the
National Autistic Society.

1. Delivering quality care to those who need it and making a positive impact on peoples health in an efficient way

1.30 Earlier in 2015, the organisations all

submitted plans for updating their
e-learning and awareness tools to enable
professionals using them for training and
awareness purposes to follow the most
up-to-date approaches. Each of the
organisations set out how it would update
its e-learning materials, including sharing
work between organisations. The
organisations have followed a best value
approach to assist GPs, social workers,
clinicians and nurses to update their autism
learning. This will have a direct impact on
the quality and effectiveness of the
services they provide. By building staff
capabilities on autism awareness, there will
be better outcomes for people with autism
and their families and a better use of public
resources. On completion they will be
accessible via https://www.gov.uk/
government/news/autism-training
resources
1.31 Some of the proposals, for example,
will develop e-learning modules on autism
that appeal to a range of learners by
delivering knowledge and understanding
from introductory to specialised levels. This
includes developing and updating video
clips of people with autism, and carers
recounting their experiences. The work by
the RCGP, for instance, will be linked to the
GP curriculum, and can be used by over
50,000 RCGP members and their local
faculties and other relevant networks.
1.32 The e-learning content updates will
include clearly defined objectives,
educational material and self-assessments
to facilitate engagement and reflection. All
the organisations are currently in the
process of undertaking their updates.

Department of Health staff autism

awareness training
1.33 Work is ongoing so that staff in DH
and its arms-length bodies (organisations
that deliver public services but are not
government departments) have access to
training on autism as part of their equality
and diversity training [Think Autism
Action 11]. DH wants to lead the way and
is working towards delivering good-quality
autism awareness training to its staff in
partnership with people who have autism.
1.34 The interactive sessions will raise
awareness on the issues facing people with
autism and provide practical help, advice
and shared experience on developing
policy, communications, hosting meetings
involving people with autism, and how
these approaches can benefit everyone.
The sessions will be made available to all
policy-makers and staff who communicate
with the public, to those who want to
increase their awareness of the issues
around autism, and to those who may work
with people on the spectrum. Following the
sessions, DH will provide links and signpost
staff to resources for continued learning. In
addition, DH will explore whether autism
could be included in a new policy training
programme that has been established for
staff, and through the Connecting
Programme will discuss the possibility of
promoting autism-related placements for
staff as part of their ongoing learning and
development. DH will encourage its arms
length bodies to follow a similar approach
within the equality and diversity training for
their staff.

Social work training

1.35 DH worked with the then College
of Social Work to commission the
development of a comprehensive continuing

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Progress Report on Think Autism: the updated strategy for adults with autism in England

professional development (CPD) framework

for social workers. This was issued in
October 2015. A guide to improve the
knowledge and skills of social workers
working with people with autism [Think
Autism Action 20] has also been
published. Both are available at https://
www.gov.uk/government/publications/
learning-resources-for-social-work-with
adults-who-have-autism.

Transport-related issues
1.36 The Department for Transport (DfT)
reviewed the use of a derogation applied
under EU Regulation 181/201120 exempting
bus and coach drivers from undertaking
mandatory disability awareness training in
2014, a year after its introduction [Think
Autism Action 14]. This review was
informed by an informal consultation with
bus industry representatives, disability
stakeholders, and charities with an interest
to determine whether drivers are receiving
adequate disability awareness training under
the current voluntary arrangement. A
summary of responses to this review
was published on the Gov.uk website in
January 2015.21
1.37 The findings of the review led to
discussions with the Disabled Persons
Transport Advisory Committee (DPTAC),
the Governments statutory advisers on
accessible transport, about undertaking a
research project on the quality and impact
of disability equality awareness training for
bus and coach drivers. The aim being that
this will then result in the development of
good practice guidance on disability
awareness training packages for these
drivers and will be made available to
operators to assist them in the

development and delivery of training in the

run up to it becoming compulsory in 2018.
The work will begin this January and will
conclude fully in the autumn. DfT is also
conducting research into the impact of a
persons impairment when accessing
transport and the social and economic
losses as a result of restricted access. The
overall aim of this project is to identify what
evidence exists on the impact of a range of
impairments on an individuals ability to
access transport (the sampling includes
autism) and what evidence exists on the
social, economic and commercial costs
(and benefits) of a fully accessible transport
system. The evidence review report was
received in October 2015 and is currently
being considered by DfT officials and will
be published this January on the GOV.UK
website.

National bus concession

application forms
1.38 The national bus concession
provides almost a million disabled people
with free off-peak bus travel throughout
England. Eligibility for the disabled persons
concession is governed by seven legal
criteria, against which local authorities,
which administer the concession, are
responsible for assessing applicants. DfT
provides authorities with guidance to help
them understand the criteria and
implement them in a fair and consistent
manner. Ultimately, however, local
authorities remain legally responsible for
administering the concession consistent
with relevant legislation.
1.39 Sometimes it can be more difficult
for people with certain categories of
disability to demonstrate their entitlement to

20. Available at: http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2011:055:0001:0012:EN:PDF

21. See: www.gov.uk/government/publications/bus-and-coach-drivers-summary-of-disability-awareness
training-review

1. Delivering quality care to those who need it and making a positive impact on peoples health in an efficient way

the concession than it is for others. DfT is

currently updating a technical guidance
document that provides advice on
accessible communications and application
processes. DfT also expects to review the
eligibility guidance soon, and will consider
how it can help local authorities to ensure
that everyone entitled to use the concession
is helped to access it. This might include
recommendations regarding the information
requested on application forms. Any future

changes to eligibility guidance will also be

consulted on with DPTAC.
1.40 At present DfT does not have legal
powers to require authorities to use a
specific application form. However, by
amending its guidance DfT hopes to
influence authorities into making changes
that will help all potential users, including
people with autism, to apply for and use
the national bus concession.

Actions going forward

Progress Report (PR) Action 6. HEE to develop a revised learning disability skills
and competency framework that will address the needs of adults with autism by
March 2016.
Progress Report (PR) Action 7. HEE to develop and incorporate awareness,
knowledge and skills in recognised areas of health, including autism, mental illness,
physical illness and social support needs, across all programmes for NHS health
professionals by 2018.
Progress Report (PR) Action 8. DH to approach the HCPC to determine the level of
autism awareness included in its criteria covering education/training for those on its
register, by the end of February 2016. Further action to be considered following the
outcome of the discussions.
Progress Report (PR) Action 9. DH will look at feedback received from autism
awareness sessions to set out further actions and encourage other government
departments and arms-length bodies to review autism awareness for their staff by
the end of March 2016.
Progress Report (PR) Action 10. The DfT bus and coach driver disability awareness
training research to be split into two phases:

Phase 1 (by the summer 2016) to consist of research seeking to understand the
current level of disability awareness training on offer and the impact it has on
disabled customers.

Phase 2 (by the summer 2016) to develop good practice guidance on bus and
coach disability awareness training. The guidance will provide a detailed
specification on the needs of disabled passengers and the expected conduct of
bus and coach drivers at all different stages of the journey. The guidance will also
include recommendations on evaluation schemes and provide detailed
information on the desired learning outcomes.

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Progress Report on Think Autism: the updated strategy for adults with autism in England

Transition from childhood to

adulthood
What people with autism want
I want the same opportunities as
everyone else to enhance my skills, to
be empowered by services and to be
as independent as possible.

Progress indicated in the 2014

self-assessment exercise

A total of 68 (45%) local authorities

rated themselves as green on
consideration of the particular
needs of young people with autism
in the transition process. This
included having training inclusive of
young peoples services, carrying
out analysis of the needs of young
people including those without
education, health and care plans,
having specialist commissioning
where necessary, and making
appropriate reasonable
adjustments.

The Children and Families Act 2014

1.41 The Children and Families Act 2014
introduced the most significant reforms to
the framework for children and young
people with special educational needs or
disabilities (SEND) for 30 years. Effective
implementation of the reforms set out in
Part 3 of the Act is improving the way
needs are identified and support is
provided. The aim is to secure better

outcomes for children and young people

with special educational needs or
disabilities from 0 to 25 years of age,
including those with autism, and their
families.
1.42 The Children and Families Act took
effect in September 2014, and the reforms
are currently being embedded. DfE is
monitoring national implementation,
working with the sector and gathering
feedback on how the transition is going,
and providing support to local authorities.
As the reforms bed in, it is expected that
children, parents and young people will
have better information about the support
available, and be more involved in
decisions about their support and in the
development of local services, while those
with more complex needs will have greater
control over their support through personal
budgets.
1.43 In March 2015, DfE published a
framework for SEND22 accountability that
provides the structure for improving
outcomes and experiences for children,
young people and their families. The new
framework will show how the system is
performing, hold partners to account and
support self-improvement. This includes
the Office for Standards in Education,
Childrens Services and Skills (Ofsted) and
the Care Quality Commission (CQC)
independent inspections of local areas
effectiveness in fulfilling their new duties.
1.44 An update on work in this area was
presented to the Autism Programme Board
at its March 2015 meeting [Think Autism
Action 23].

22. Department for Education (March 2015). Special Educational Needs and Disability: Supporting local and
national accountability. Available at: www.gov.uk/government/uploads/system/uploads/attachment_data/
file/416347/Accountability_Publication.pdf

1. Delivering quality care to those who need it and making a positive impact on peoples health in an efficient way

The views of children and young

people
1.45 The Act places much greater
emphasis on local authorities taking
account of the views, wishes and feelings
of children and young people, including
those with autism, and parents when
carrying out their SEND duties.

Better information and advice

1.46 Local authorities have to provide
information for parents and young people
through a local offer on the education,
health, care and other services that are
available locally. Children, young people
and parents must be consulted by local
authorities when developing the local offer
and this is an opportunity to highlight the
need for development in local services,
including local autism services.
1.47 Young people with autism and their
parents will be better informed about the
options available to them. The local offer
must include advice and information to
help young people make the transition from
school and from post-16 provision to adult
life, about independent living, and the
arrangements for supporting young people
moving from child to adult social care
services.
1.48 Under grant funding from DfE,
National Autistic Society has worked with
young people and local authorities to
ensure that the voice of young people with
autism is heard in the development of local
offers and it has published Local Voices,
Local Choices, which gives local authorities
guidance on involving young people with
autism in developing their local offers23
[Think Autism Action 6].

1.49 Every local authority has a duty to

provide impartial information, advice and
support for children, young people and their
parents. The Government is also investing
30m (20142016) to provide independent
supporters who can support parents and
young people with education, health and care
(EHC) plans, needs assessments and plans,
including the transition from learning
difficulty assessments (LDAs) and
statements. Independent supporters explain
how the process works, including the legal
requirements, and how families are able to
engage with it, and then help them to engage.
1.50 There is an independent supporters
service in every local authority area. An
ongoing survey commissioned by the
Council for Disabled Children, based on
the first 900 responses from parents and
young people, found that 90% felt the work
with independent supporters was very or
extremely useful 87% saying the support
they received had a positive impact. In
2015/16, independent supporters services
anticipated providing support to more than
35,000 families.

Education, health and care plans

1.51 A key change within the Act is that it
replaces SEND statements and Learning
Difficulty Assessments (LDAs) with more
coordinated EHC plans for children and
young people aged 025 with the most
complex needs. EHC plans are drawn up
following a more participative and
coordinated assessment than the
assessments for SEND statements and
LDAs. They are more person-centred,
reflecting the wishes and aspirations of the
children and young people themselves.

23. National Autistic Society (2014). Local Voices, Local Choices: A guide to consulting young people with autism
on your local offer. Available at: www.autism.org.uk/~/media/NAS/eCommerce/G-M/Local Voices Local
Choices.ashx

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Progress Report on Think Autism: the updated strategy for adults with autism in England

1.52 At January 2015, 60% of children

identified by schools and local authorities
whose primary need was an autistic
spectrum disorder had SEND statements or
EHC plans, with extra support being
arranged by the local authority. This is a
higher percentage than for most other types
of need. DfE expects that no children and
young people with statements of SEND will
lose their statement and not have it replaced
by an EHC plan just because the system is
changing. It is expected that those who
would have continued to have a statement
under the old system will be transferred to
EHC plans following a transfer review. In
future it is expected that many children and
young people with autism will benefit from
the extra and more coordinated support
that comes with EHC plans.

Children and young people with

autism without SEND statements/
EHC plans
1.53 Support for those with autism but
without EHC plans will also be improving
under the new arrangements. The Special
Educational Needs and Disability Code of
Practice: 0 to 25 years, the statutory
guidance that accompanies the new
legislation24 sets out clearer guidance on
identifying children and young peoples
needs.
1.54 The guidance makes it clear that
children with autism can have difficulties
across all four main areas of need:

communication and interaction;

cognition and learning;

social, emotional and mental health

difficulties;

sensory and/or physical needs.

1.55 The autism statutory guidance

highlights that local authorities, NHS
bodies and NHS Foundation Trusts need to
recognise that not all young people with
autism will have EHC plans. Receiving
support in making the transition to
adulthood, and accessing appropriate
services as an adult, should not be
dependent on having an EHC plan.
1.56 Under the care and support
statutory guidance, issued under the Care
Act,25 local authorities should consider how
they can identify young people who are not
receiving childrens services and are likely
to have care and support needs as adults.
The guidance identifies young people with
autism whose needs have been largely met
by their educational institution as an
example.

Joint commissioning and working

1.57 Local authorities are required to jointly
commission, with health bodies, services for
children and young people with SEND and
to integrate services to improve outcomes.
Joint commissioning arrangements will build
on local JSNAs and be a key part of local
health and wellbeing strategies. The NHS
England Mandate has a specific objective
on children and young people with SEND,
and health bodies must have regard to the
Special Educational Needs and Disability
Code of Practice. A separate guide on the
SEND reforms has been produced for
health and wellbeing boards. Children with

24. Special Educational Needs and Disability Code of Practice: 0 to 25 years (January 2015). Available at:
www.gov.uk/government/publications/send-code-of-practice-0-to-25
25. Care and Support Statutory Guidance: Issued under the Care Act 2014 (October 2014). Available at:
www.gov.uk/government/uploads/system/uploads/attachment_data/file/366104/43380_23902777_Care_
Act_Book.pdf

1. Delivering quality care to those who need it and making a positive impact on peoples health in an efficient way

autism often require multi-agency

assessment and intervention, and the
reforms strengthen this. Already there is
evidence of some local authorities having
developed new integrated assessment

pathways for children with autism, for

instance in Doncaster, St Helens,
Manchester and Leicestershire
(http://www.leics.gov.uk/autuism_
spectrum_disorder_pathway.pdf)

Case study: an effective multi-agency assessment pathway in Doncaster

In 2011 Doncaster CCG identified some real concerns about the autism pathway in
their area, with over 400 children and young people waiting up to two years for an
assessment. To tackle this problem, the CCG appointed a lead commissioner, while
partner agencies agreed to set up a steering group with high-level representation,
including consultants, psychologists, parents and education and early years
professionals who brought a wealth of experience to the group.
The steering group worked together to look at solutions based around NICE guidance
and input from stakeholders, in particular parents and carers. It explored family
experiences in detail and identified what support families wanted. From these
discussions the themes that emerged were the importance of early identification,
services talking to each other and post-diagnosis support. Families explained that
support from professionals who could offer real coping mechanisms to help build
their resilience was often the most helpful intervention.
As a result of this work with families and between professionals, from August 2014 a
new NICE compliant autism pathway has been in place which significantly increases
capacity and expertise from a range of partners, including consultants, speech and
language therapists, clinical psychologists, educational psychologists and early
years professionals. This core team works together to carry out a comprehensive
assessment of each child or young person.
The post-diagnosis landscape is also much improved. Families are able to access
support directly from highly skilled family practitioners, an outreach education team,
coordinated parent programmes, increased specialist nursery provision, a short
breaks service and an integrated Children with Disabilities Team. Most importantly,
there is a commitment to embed these services so they are sustainable in the
longer term.
The steering group has now evolved into Doncasters Autism Strategy Group and will
continue to oversee these services. Parents and carers are fundamental to this group
and it has been a real driver in getting to where Doncaster is now with the autism
pathway, which means there are no longer any children younger than 5 waiting for an
autism assessment and the waiting list for those aged over 5 has been cut by twothirds. Doncaster CCG is confident that, from May 2016, all children and young
people will have a diagnosis within 18 weeks of referral a remarkable achievement
considering the starting point in 2011.
Feedback from parents and carers who have been through the new pathway is
extremely positive across all services, and is the result of the commitment and
dedication of many stakeholders.

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Progress Report on Think Autism: the updated strategy for adults with autism in England

Addressing the adversarial nature

of the system
1.58 One of the difficulties with the former
SEND framework was that parents felt they
had to fight for the right support for their
children, too often having to register
appeals at the First-tier Tribunal (SEND). Of
the 3,147 SEND appeals registered at the
Tribunal in 2014/15, 1,094 (nearly 35%)
were in relation to children with autism.
This was the largest number for any one
type of need.
1.59 In order to address the adversarial
nature of the former system, the 2014
Children and Families Act and the Code of
Practice encourage closer working
between parents, young people and local
authorities. Together with the information,
advice and guidance services for parents
and young people, these provisions
should help to avoid and reduce disputes
between young people, parents and local
authorities.
1.60 The legislation also maintains the
duty on local authorities to have
disagreement resolution services available
and introduces a mediation stage in the
Tribunal appeal process. Parents and
young people who are intending to appeal
to the Tribunal now have to contact an
independent mediation adviser and say
whether they want to go to mediation
before appealing to the Tribunal. The local
authority has to attend the mediation and
this provides the opportunity for disputes
to be resolved earlier.
1.61 A joint review of arrangements for
disagreement resolution under the new
SEND system is under way by DfE and
MoJ. This includes the operation of
disagreement resolution and mediation
services, the impact of EHC plans in

promoting early agreement, and health and

social care avenues for complaints.
There is also a SEND Tribunal pilot, which
extends Tribunal powers to make
recommendations on health and social
care issues as well as educational ones.
Ministers are required to report back
to Parliament following the review, by
31 March 2017.

School and further education

legislation joined up
1.62 The Children and Families Act has
ended the divide between the legislation
which applied to children with SEND in
schools and those with learning difficulties
and disabilities in further education (FE),
which too often led to young people falling
off a cliff edge at 16. Under the Act there is
now a coherent 025 years system,
bringing parity of rights for those at school
and at college. There will also be continuity
of support beyond 18 and up to 25 for a
young person if they need it to achieve their
desired education and training outcomes
and to help them prepare for adulthood.
EHC plans will provide a much greater
focus on these long-term outcomes, which
will be identified through discussion
between the young people and the other
parties involved.
1.63 The Act places FE colleges under
new duties, including the duty to use [their]
best endeavours to secure the special
educational provision that all young people
need, not just those with EHC plans. This is
a significant area of the reforms for those
approaching the transition to adulthood.
FE colleges must have regard to the
Code of Practice and cooperate with local
authorities.
1.64 Chapter 7 of the Code of Practice is
devoted to the FE sector, and sets out what

1. Delivering quality care to those who need it and making a positive impact on peoples health in an efficient way

FE providers should be delivering for young

people with SEND, including the
expectation that they will be providing
tailored and stretching study programmes
designed to help prepare young people for
adulthood. Funding for learners aged
1618 in FE with special educational needs
or disabilities (and those up to age 25 if
they have an LDA/EHC plan) is provided
by DfE through the Education Funding
Agency.
1.65 DfE is working closely with the
sector to provide support on implementing
the reforms, producing a guide to the
Code to help the sector prepare for
implementation, running ongoing
workshops for colleges and local
authorities on EHC plans and how good
study programmes can help young people
achieve the outcomes in their EHC plans,
and running a SEN FE Implementation
Group to address issues.
1.66 FE colleges and other training
providers across England have the
freedom to respond to the needs of
learners in their local communities. Many
have developed innovative ways of
responding to the needs of learners with
SEND and are working with a wide range
of partners.

Provision for the 19 years+ age

group without plans
1.67 Education providers are required
under the Equality Act 201026 to provide
reasonable adjustments for learners with
learning difficulties and/or disabilities, and

the Equality Act Further and Higher

Education providers guidance27 includes a
wide range of examples of what might
constitute reasonable adjustments in FE.
The Department for Business, Innovation
and Skills (BIS) provides learning support
funding to colleges and training providers
through the Skills Funding Agency. This is
to help them meet the additional needs of
learners with learning difficulties and/or
disabilities who are aged 19 or over and
who do not have an LDA or EHC plan.
This includes those on a traineeship or
apprenticeship, so that they can participate
fully in education and training. This funding
also helps providers to meet the cost of
reasonable adjustments as set out in the
Equality Act 2010. BIS have also funded
Disability Rights UK28 to work with key
organisations to produce a new best
practice toolkit, bringing together and
augmenting good practice resources for
colleges on support for disabled learners,
including those with autism.
1.68 The Office of Qualifications and
Examinations Regulation (Ofqual) places
General Conditions of Recognition on the
awarding organisations they regulate in
relation to reasonable adjustments so as to
enable a disabled learner to demonstrate
his or her knowledge, skills and
understanding to the levels of attainment
required; these are published. NAS is
involved with ongoing work with Ofqual to
consider how exam papers can be
designed to be more accessible to autistic
students.

26. See: www.legislation.gov.uk/ukpga/2010/15/contents/enacted/data.htm

27. See: www.equalityhumanrights.com/advice-and-guidance/further-and-higher-education-providers-guidance
28. See: www.disabilityrightsuk.org

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Case study: Askham Bryan Colleges autism champions

Askham Bryan College has experienced a significant increase in the number of
students with autism. Over a five-year period, the number of young people with autism
attending the college trebled, from 31 in 2008/09 to approximately 90 in 2013/14. The
college already had a dedicated autism coordinator in place, but she was struggling to
meet the demand posed by these increasing numbers. In response, the college
decided to create an autism champion for each department. The aim was to increase
learners access to staff trained in working with young people with autism.
Achievement and progression data suggested that, while many young people with
autism were able to move from entry level to level one, and in some cases from level
one to level two, progression from level two to level three was less effective. As a
result, the college prioritised training for staff working at levels two and three.
By training an autism champion in each department, the college ensured that young
people with autism could access specialist support from a member of staff with an
understanding of their autism and the subject matter, expectations, delivery style and
examination requirements of their course. The autism champion was well placed to
provide support and guidance to individual learners and their tutors about appropriate
adjustments, including adaptations and strategies for support. The autism champion
is the first point of contact for a learner with autism; the person they can go to if they
are having any problems. The autism champion will liaise with departmental staff and,
where additional support is required, refer the young person to the autism coordinator.
There are currently 20 autism champions across the college, all of whom have
undertaken a specialist level two accredited qualification. In rolling out the training, the
college prioritised the departments which had the highest numbers of young people
with autism. It also trained the level two course manager and a senior manager as
autism champions. The level two course manager has an overview of all level two
provision. As such, she is well placed to understand the implications of level two
course entry requirements, methods of assessment and accreditation. Being trained
as an autism champion has enabled her both to identify potential barriers for young
people with autism and work with department staff to develop and implement
solutions to support progression for individual learners and across subject disciplines.
Training a senior manager as an autism champion has also proved very effective.
Learning about autism has enabled her to better understand the reasons for any
challenging behaviours shown by young people with autism, and to make an
appropriate judgement about the best ways to address them. In making these
judgements, the college can also draw on the relevant autism champion, someone
who knows the individual concerned and has an understanding of autism and the
way it affects them. This approach has not only led to a significant reduction in the
number of young people with autism being subject to the colleges disciplinary
process, but it has also enabled the college to put in place more appropriate

1. Delivering quality care to those who need it and making a positive impact on peoples health in an efficient way

strategies to effectively manage behaviours which challenge and, in some cases, to

eliminate them altogether.
The autism champions have proved so effective that the college aims to train another
20 staff, and to extend the role to others such as receptionists, librarians and catering
staff. Moreover, the adaptations made to the college curriculum and environment as a
result of the autism champions have significantly reduced the levels of anxiety and
stress experienced by some of the young people with autism, enabling them to
access learning more effectively.

Case study: learner with autism

Miss E. Burgess, Head of Learning Support at Heathfield Community College,
talks about the colleges facility for students with high functioning autism.
When Steve joined us in year 9, we were almost six months into our first year as a
specialist autistic spectrum condition facility. While we had staffing, enthusiasm and
many plans in place, we were still often working on a batten down the hatches and
get through the day basis. Our strategy was born out of a recognition of our success
with challenging students and a highly inclusive ethos, and we had the clear vision
and strategy to ensure that our facility would provide expertise, awareness and a
flexible environment so that students who might otherwise be catered for in specialist
provision could attend and be ultimately successful in a mainstream environment.
Steve was the epitome of this. Having been unsuccessful in his previous secondary
setting, he had spent the best part of a year out of education and was described as
academically able but lazy and aggressive. However, what we were in fact presented
with was a boy who was so highly anxious that he could not bear coming into the
school building if he was in sight of others and who winced every time the bell rang.
We started with a flexible timetable, which built up over the course of six weeks from
one hour a day to the full week in school, each day holding our breath in case it all
went terribly wrong and he refused to come in, but he never did. It was not all plain
sailing, of course. There were a number of incidents where the stress and anxiety of a
busy school took their toll several mock exam papers ripped into pieces and an
unmovable garden table which did not live up to its description when he managed to
upend it. When these incidents occurred we were fortunate that the leadership at the
college shared our flexible approach and that procedures could be established to
accommodate someone whose behaviour was clearly a result of anxiety, sensory
issues and very real difficulties with social understanding.
Steve is no longer at our college having achieved GCSEs and A Levels he is now
living and working abroad with a long-term partner. Since he left weve had many
other Steves in our facility, each just as unique but all with a range of complex
needs. In 2010 we were proud to be awarded accreditation by NAS. Our college

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Progress Report on Think Autism: the updated strategy for adults with autism in England

provision has developed through these experiences and, while we still have days
when it feels like we are firefighting, in reality we have well-established provision that
starts with every member of the college staff being aware of autistic needs and ends
with individual packages for students, wherever possible. We continue to promote an
inclusive philosophy and many of those who ask to visit the facility are met with the
reply that there is really nothing physical to see here. There is no separate unit with
students being taught outside the classroom. Instead we have the opportunity for
withdrawal, if needed, and teaching staff who are equipped to meet the needs of the
most anxious or exceptional. We feel that this is the greatest illustration of what we are
aiming to achieve a parity of school experience for all students, autistic or otherwise,
where the curriculum and school environment are accessible to all and where
reasonable adjustments are made on an individual basis rather than a one
adjustment fits all model.
For our part we will continue to welcome the Steves of this world to our college. We
are pretty sure there are a few in this years cohort, with whom we look forward to
working. And so we recommence the necessary cycle of staff awareness training,
communication, preparation and winning the hearts and minds of students and
parents, who are understandably wary of the mainstream system.

Case study: Brain in Hand

Brain in Hand is one form of an assistive technology for people on the autism
spectrum. NAS ran a small trial of Brain in Hand as part of its support for higher
education (HE) students in London, funded by DH as an Autism Innovation Fund
project. Thirty organisations in the UK have now introduced the system into their
services, including eight local authority social services teams, autism service
providers and schools and colleges.
More and more people on the autism spectrum are entering HE. The Higher
Education Statistical Agency recorded over 2,400 students with autism spectrum
conditions in UK universities in 2013/14, a 300% rise in three years. These students
require appropriate support and adjustments to really thrive. For young adults, moving
from further education to university can be overwhelming and worrying.
The results were encouraging: overall, 53% of students rated the impact of Brain in
Hand as positive or extremely positive, while the same number felt more able to
implement strategies and half reported feeling more confident.
Brain in Hand is a web-based mobile assistive technology. It uses a secure, cloudbased service that synchronises with a smartphone or tablet, giving students access
to their coping strategies when they need them, and allowing them to report their
mood and feelings.

1. Delivering quality care to those who need it and making a positive impact on peoples health in an efficient way

The key features are:

A diary feature creates a structured routine and recipes for difficult-to-remember

tasks.

Users can build pre-planned coping strategies into the system to help them deal
with difficult situations. These strategies are instantly accessible in a simple format
on their smartphone.

A traffic light system alerts a facilitator when a user reports high anxiety, enabling a
timely intervention.

Data is recorded in real time and displayed on a timeline, allowing users and
support team members to track and understand situations or issues.

Brain in Hand is now available to students on the autism spectrum at universities

across the UK through Disabled Students Allowances, supported by NAS who
provide facilitation in response to the traffic light alerts.
You can get more information and case studies from Matt Daniel:
email [email protected] or visit www.braininhand.co.uk

Provision for students in higher

education

Students Allowances study assessor to

help inform discussions, if they wish.

1.69 As previously indicated, HE providers

have specific legal duties under the Equality
Act 2010 to provide reasonable adjustments
for disabled students. In addition to the
support available through HE providers, the
Government also provides individual
support for disabled students in the form of
Disabled Students Allowances. Disabled
Students Allowances are non-repayable
grants that are not means tested and are
available for a range of support, including
non-medical help (i.e. human support such
as note-taking), funding for items of
specialist equipment and assistive
technology, and accommodation. Students
wishing to apply for Disabled Students
Allowances will undergo a study needs
assessment, during which their particular
needs will be discussed within the context of
their course of study. Students with an EHC
plan may ask the local authority to provide a
copy of the EHC plan to the Disabled

1.70 For undergraduate students

studying full time the maximum allowances
are 20,725 annually for non-medical help
and up to 5,212 for specialist equipment.
Funding is also available for disabled
students studying part time and at
postgraduate level. BIS has been working
with experts in the sector on how to make
applying for Disabled Students Allowances
easier for students with autism, and some
changes to guidance documents are
under way.
1.71 The Government has recently
consulted on how Disabled Students
Allowances will be provided in the future,
and a response will be published in due
course. The consultation considered how
institutions might work towards a more
consistent, more inclusive learning
environment for all students, including
disabled students.

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Progress Report on Think Autism: the updated strategy for adults with autism in England

Guidance on the transition to

adulthood and employment
1.72 A new chapter in the SEND Code of
Practice is devoted to preparing for
adulthood, giving advice on planning for
the transition to adulthood from an early
age and focusing on aspirations and
outcomes to ensure that there are
pathways into employment, independent
living, participation in society and good
health. The National Development Team for
Inclusion is being funded by DfE to support
local areas in developing their approach to
preparation for adulthood.

Support for work-based learning

into employment
1.73 We know that too many adults with
autism are not in employment, and that
79% of those with autism on out of work
benefits want to work. This means that the
increasing emphasis on pathways to
employment for young people with SEND
should be particularly beneficial for those
with autism. Work-based learning is
available through personalised study
programmes for all young people aged
1619, or up to age 25 if the young person
has an EHC plan.
1.74 Traineeships and supported
internships are two study programmes
which are specifically designed to prepare
young people for employment.
Traineeships are a mainstream study
programme for those who are almost ready
to start paid employment or an
apprenticeship. Supported internships
enable young people aged 1624 with a
statement of SEND, an LDA or an EHC
plan to achieve sustainable paid
employment by equipping them with the
skills they need for work, through learning

in the workplace. They are based primarily

at an employers premises and, wherever
possible, they support the young person to
move into paid employment [Think Autism
Action 24]. In addition to these study
programmes, apprenticeships allow young
people or adult learners to earn while they
learn in a real job, while also gaining a
qualification. Thousands of disabled
people have already benefited from
apprenticeships. In 2013/14, the most
recent year for data, over 38,000 of those
starting an apprenticeship declared a
disability of learning difficulty.
1.75 The Government is supporting local
authorities to improve pathways to
employment for young people with SEND
through the national delivery support
contract, Delivering Better Outcomes
Together. Delivery partners support local
areas and promote best practice. In March
2015 an additional 5m was made
available for local authorities to fund
preparation for employment for young
people with SEND. Local authorities are
targeting funding to:

significantly increase the numbers of

supported internships offered by FE
colleges and schools, leading to more
young people with SEND entering paid
employment and improving the low
current employment rate of just 7% for
those with moderate and severe
learning difficulties;

build strong relationships with

employers of all sizes and strategically
coordinate activity at a local and
regional level on behalf of schools and
colleges. Employer engagement can be
a barrier for schools and colleges and
this should increase work experience
for young people with SEND, including
supported internship work placements;

1. Delivering quality care to those who need it and making a positive impact on peoples health in an efficient way

enable schools and colleges to improve

the preparation for employment
activities they offer through
personalised study programmes for all
young people with SEND, not just those
with EHC plans, resulting in more
young people finding paid employment.

Supported internship case study: Taurai at National Grid

Taurai is 19 years old. He is autistic and had a statement of SEND at his special
school. He had been bullied throughout his life for his label, which made him hate
himself and his condition. When Taurai was 17, he had very few options for his future.
Then his school told him about Employability, Lets Work Together, a supported
internship programme they were setting up with National Grid.
Through this programme, Taurai worked in three placements throughout the year
while continuing to study English and Maths. At the end of the year he could apply for
any available roles, just like any other prospective employee.
Taurais first placement was in the Safety, Sustainability and Resilience department.
He was asked to create a presentation linking sustainability performance with financial
performance. He had never done anything like that before, and it required a lot of
research, planning and coordination. At first, Taurai thought there was no way he
could do it. But he carried on reading and analysed the text, and realised he could.
For the first time, he did something that was beyond what he thought were his
abilities. Both he and his mentor were proud and deeply impressed by this
achievement. Over the course of the year, Taurai worked hard and did extremely well
in his other placements.
At the end of his supported internship, Taurai was offered a permanent paid job. He
was delighted that National Grid had noticed how much hard work he had put in to
succeed. He accepted the job and began getting ready for the rest of his career.
Taurai says: Being in Employability, Lets Work Together made me realise that
anything is possible and that I can do things I never thought I could. If there were more
companies using models like this, then a lot of us would be so much better off.
Employability has shown me that it doesnt matter if you have autism or disabilities
you can still do it. Now, I dare to have an ambition, the skys the limit and I will keep on
working hard until I can say Ive reached my goal!

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Progress Report on Think Autism: the updated strategy for adults with autism in England

Supporting the transition to adult

health services

Support for voluntary sector

projects

1.76 Under the Children and Families Act

2014, CCGs must cooperate with local
authorities to jointly commission services
that will help meet the outcomes in EHC
plans. This should include supporting the
transition between paediatric and adult
services.

1.79 DfE is funding a programme of

support in 2015/16 to voluntary
organisations to encourage better provision
and ensure successful implementation of
the reforms through:

the Autism Education Trust, which

provides three-tiered training in autism
to early years providers, schools and FE
colleges. Since the spring of 2012
almost 80,000 education staff have
received training;

Ambitious about Autisms Succeeding

at College project,29 which identified
good practice to help students settle
well after making the transition from
school to college. This builds on their
Finished at School programme,30 which
looked at innovative ways of supporting
young people with autism, particularly
those towards the more severe end of
the spectrum, to make the transition
from school to FE;

NAS, which improves understanding of,

and provides families with information
and advice on, exclusions, disability
discrimination claims and alternative
provision; advises professionals on
early intervention; maps alternative
provision, identifying gaps and good
practice; and trains teachers in the use
of autism-friendly online teaching as a
form of alternative provision. This builds
on earlier work to improve
understanding of and participation in
the reforms of the SEND system and to
provide advice on exclusions.

Supporting ongoing social care

needs
1.77 Under the Care Act 2014, from April
2015 local authorities must carry out a
transition assessment if it appears to them
that a young person under 18 years of age,
whether or not they have an EHC plan, is
likely to have care and support needs after
turning 18 and the local authority is
satisfied that it would be of significant
benefit to that young person to do so. Care
and support statutory guidance highlights
young people with autism as a group who
may not have received support as children
but who might have care needs as adults.
1.78 The SEND Code of Practice makes it
clear that, under statutory guidance
accompanying the autism strategy, SEND
coordinators in schools should inform
young people with autism of their right to a
community care assessment and their
parents of the right to a carers
assessment. This should be built into the
preparing for adulthood review meetings of
EHC plans.

29. Ambitious about Autism. Funding Awarded for New Succeeding at College Project (press release, 26 June
2015). Available at: www.ambitiousaboutautism.org.uk/understanding-autism/funding-awarded-for-new
succeeding-at-college-project
30. Ambitious about Autism. Finished at School: Supporting young people with autism to move from school to
college. Available at: www.ambitiousaboutautism.org.uk/sites/default/files/Finished_at_School_guide.pdf

1. Delivering quality care to those who need it and making a positive impact on peoples health in an efficient way

Case study: the Autism Education Trusts post-16 training programme

The DfE-funded Autism Education Trusts (AET) training hubs programme 201315
represents a widening and deepening of the AET (school age) programme 201113.
The 201315 programme involved the development of new early years (EY) and post-16
(P-16) training materials for workforces and settings supporting EY and P-16 children
and young people with autism, and this has been extended in the current DfE-funded
2015/16 programme. The P-16 strand of the programme consists of three stages of
training, which are delivered via seven P-16 training hubs linked to two improvement
frameworks: the AET National Standards and the AET Competency Framework.
An independent evaluation of the AET programme by Warwick University highlights
initial examples of the successful use of the P-16 programme to train a range of FE
college staff, in order to provide better autism support for college students.
A head of transitions at one college said: The training has enabled staff to have a
better awareness and understanding of the challenges students with autism may
face, along with the practical strategies that they are able to apply when supporting
students with autism.
A CPD trainer from another college trained the entire student services staff in Tier 1
(basic training) and briefed them about the role they had in supporting young people
with autism to access the curriculum. The evaluation found that target numbers for
Tier 1 had been exceeded, with significant levels of interest from delegates in a range
of P-16 settings. However, the evaluation highlighted some challenges with take up of
the more in-depth Tier 2 and Tier 3 training.
Steve Huggett, Director of the AET, reports that the organisation is currently reviewing
options to increase the take-up of its Tier 2 and 3 training for colleges. A number of
approaches are being considered, but an important one is looking at how to engage
with senior management teams in P-16 settings. The size and complexity of FE
colleges and the differences in funding compared with schools will need to be
addressed if this challenge is to be met.

New school provision for children

with autism

NAS Church Lawton School in Cheshire

and Thames Valley School in Reading.

1.80 School provision for children with

autism over the years has developed across
the local authority maintained, academy
and independent sectors. Under DfEs free
schools programme, there are now 19
special free schools open across the
country, six of which specialise in provision
for children with autism. These include the

1.81 There are a further 11 special free

schools due to open in the future, five of
which will specialise in provision for children
with autism. These include the Heartlands
free school in Haringey and a second NAS
free school, the Vanguard free school in
Lambeth. The other six schools will offer
some places to children with autism.

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Progress Report on Think Autism: the updated strategy for adults with autism in England

Actions going forward

Progress Report (PR) Action 11. DfE to monitor the effective implementation of the
SEND reform programme. In March 2015 DfE published a framework for SEND which
will show how the system is performing, hold partners to account and support selfimprovement. This includes inspections by Ofsted and the CQC of local areas
effectiveness in fulfilling their duties in relation to children and young people with SEND.
Ofsted and the CQC launched a public consultation on the proposed inspection
framework in October 2015, with the first inspections planned for May 2016.
Progress Report (PR) Action 12. DfE to review arrangements for disagreement
resolution in 201517, including a Tribunal pilot. The pilot will investigate the case for a
single point of access to the Tribunal on education, health and social care issues. DfE
and MoJ ministers must report back to Parliament on the outcome of the review by
the end of March 2017.
Progress Report (PR) Action 13. DfE has funded Autism Education Trust, Ambitious
about Autism and NAS projects in 2015/16 to support children and young people with
autism through training education staff, exploring good practice in the transition to FE
colleges, and offering support related to exclusion and alternative provision.
Resources from these projects will be made available by the end of March 2016.

2. A core part of health and care delivery

2. A core part of health and care delivery

2.1 The NHS, working with local

authorities, has a responsibility to provide
autism diagnostic services.

Diagnosis

(17%) rating themselves as green

for accessing speech and language
therapy assessments.

A total of 27 local authority areas

(18%) rated themselves as green
on whether post-diagnostic autismspecific or reasonably adjusted
occupational therapy assessments
can be accessed.

There was a large improvement

nationally in the number of
diagnostic pathways established
since the 2013 self-assessment.
Some 23 partnership boards
reported that they had established
a pathway since that year, while
three partnership boards reported
that no local diagnostic service had
been planned or established. A
total of 63 (41%) reported that
implementation of a pathway was
currently in progress. Local
authority areas commonly reported
that there were different pathways
in place for adults with and without
learning disabilities.

The reported average wait between

referral and assessment was similar
to that in the previous years
framework, ranging from 27.9
weeks to 29.6 weeks. The NICE
recommendation is 30 weeks. This
question had been slightly modified
from the previous self-assessment
exercise, and this had the effect of
producing wider variation in the
waiting times reported.

What people with autism want

I want a timely diagnosis from a trained
professional. I want relevant
information and support throughout
the diagnostic process.
Progress indicated in the 2014 selfassessment exercise

In total, 83 local authorities (55%)

rated their performance as green
for the establishment of a local
diagnostic pathway. This required a
pathway to be in place and
accessible, GPs to be involved in
the process, and the wait for
referral to the diagnostic service to
be less than three months.

A total of 95 (63%) reported that

they offered a specialist autismspecific service.

A total of 82 (54%) reported that

diagnosis triggered an automatic
offer of a community care
assessment.

Some 45 local authority areas

(30%) rated themselves as green
on whether people with autism can
access post-diagnostic autismspecific or reasonably adjusted
psychology assessments, with 26

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Progress Report on Think Autism: the updated strategy for adults with autism in England

2.2 Diagnosis can be particularly

important for adults who did not have their
condition recognised as children. Their life
to date may have been affected by a sense
of not fitting in, and of not understanding
the way they respond to situations or why
they find social settings difficult. They may
also have been users of learning disability
or mental health services where their
autism was not recognised or supported.
A diagnosis can be an important step in
ensuring that support takes account of
how a persons autism affects them and
their whole family.
2.3 In every local area, health services
should have a pathway to diagnosis, just as
the local authority should have a clear
framework for assessing the care and
support needs of children and adults with
autism. Local areas will continue to be
asked to assess their progress on this
through the local area self-assessment
exercise. It is recommended that the NICE
guidelines are followed.
2.4 While local authorities lead
commissioning for care and support
services for people with autism, CCGs take
the lead responsibility for commissioning
diagnostic services and work with local
authorities to provide post-diagnostic
support, regardless of whether the person
has an accompanying learning disability,
other hidden impairments or a
co-occurring mental health problem. Some
people with suspected autism may not
need further support. However, this does
not mean that they should not have access
to a diagnosis. For some people, simply
having a diagnosis of autism confirmed can
be incredibly important, and can help them
avoid needing more intensive support at a
later stage, for example if they have a crisis.

2.5 The autism statutory guidance states

that NHS England local audit teams will
assess the quality of autism diagnostic
pathways and peoples experiences of
using them [Think Autism Action 17], and
this work will continue over the coming
months (see Actions going forward).
2.6 DH has supported the work of the
Joint Commissioning Panel (JCP) for
Mental Health, a collaboration between
17 leading organisations co-chaired by the
RCP and the RCGP. They have been
developing a guide to encourage
commissioners to use a values-based
commissioning model when planning
diagnostic services [Think Autism
Action 16]. The JCP will now issue the
practical guide on autism by April 2016, in
order to include learning from work by NHS
England (see action below).

Action going forward

Progress Report (PR) Action 14.
NHS England, working with the
Association of Directors of Adult Social
Services and advice from PHE and
DH, will use data from the autism selfassessment exercise to work with a
sample of local authority areas to
identify the barriers that are stopping
them having fully established
diagnostic pathways, and share the
learning from this exercise with all local
authorities and CCGs. Initial work to
take place in January and February
2016.

3. Making sure that people have a good experience of care and services

3. Making sure that people have a good

experience of care and services
3.1 Innovation, awareness and a better
use of technology can all improve support
for people with autism.

Innovation, awareness and

technology
What people with autism want
I want to be accepted as who I am
within my local community. I want
people and organisations in my
community to have opportunities to
raise their awareness and acceptance
of autism.
I want the everyday services that I
come into contact with to know how to
make reasonable adjustments to
include me and accept me as I am. I
want the staff who work in them to be
aware and accepting of autism.

The Autism Innovation Fund

3.2 Think Autism wanted people with
autism to really be included as part of the
community. This meant looking beyond
statutory services at how communities can
be more aware of and accessible to the
needs of people with autism. The
successful approach taken on dementia in
response to the Prime Ministers Dementia
Challenge provided an innovative model
from which to learn. Think Autism also

wanted to promote innovative local ideas,

services or projects which could help
people in their communities through new
models of care, particularly for lower level
support for those not meeting eligibility
criteria for statutory support. This included
models which would support early
intervention or crisis prevention or which
would support people to gain and grow
their independence, or to find employment.
It was hoped that this would also improve
understanding of the cost-effectiveness
involved and help local authorities get more
for their local populations.
3.3 A 1m Autism Innovation Fund was
launched to help drive creative and costeffective solutions, and identify new models
of good practice that could be replicated in
other areas [Think Autism Action 4].
A total of 360 bids were received and
ultimately 42 were successful; these are
listed at Appendix B. Examples are given
as case studies in this report.
3.4 As the projects end and are
evaluated, reports will be placed on the
Autism Connect website by the end of
January 2016 and can be accessed at:
www.autism-connect.org.uk.

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Progress Report on Think Autism: the updated strategy for adults with autism in England

Living with Autism project

Manar Matusiak summarises the Living with Autism project, which was a
partnership project assisting people with autism and their families in order to
improve their quality of life.
The aim was to develop practical early intervention strategies to prevent crises and
enhance wellbeing. The partnership comprised one private company and three
charities in North Yorkshire, Cheshire and Warwickshire. The partnership
organisations were Living Autism, a national online and offline hub for those seeking
support, advice, information and connections to specialist autism services;
Independent Advocacy, a Warwickshire charity working with young people;
Space4Autism, a Cheshire charity providing an autism support network for families;
and Time Together, a support group for adults with autism.
The project has taken innovative ideas from various sources to develop a range of
practical autism strategies for use nationally a helpline for all, practical workshops for
families, coaching for young people, and enabling adults to access leisure activities.
Through partnership, the project has provided preventative strategies and techniques
to adolescents and adults of all ages. Project partners were in daily contact with
people with autism and their families in a variety of situations and have addressed
different issues.
Projects undertaken were:

expanding the Living Autism national helpline service;

supporting the needs of young adults with autism in transition from secondary
education in Warwickshire, and working with North Warwickshire College and
local schools to raise awareness of issues facing these young people;

practical workshops for families in Cheshire, covering issues they face every day
and developing materials to enable lessons learned to be used nationally;

facilitating a group of adults with autism to organise and access leisure activities in
North Yorkshire.

developing the Coach in My Pocket software application for daily use by people
with autism;

The underlying message is that there is much knowledge already in the public domain
of benefit to people with autism in their daily lives. Collaborative projects involving
independent, charitable and user-led organisations can collate guidance of value
nationally using structured projects such as this.

3. Making sure that people have a good experience of care and services

Some themes that emerged have been:

There is a strong appetite for workshops providing sensible, practical strategies,

delivered in an expert and accessible manner.

Appropriate, unobtrusive support can help people with autism improve their
confidence, social interaction and independence skills as part of a group.

Initial pilot studies show that a software tool to help people with autism organise
their lives can be of benefit to some.

Raising awareness within education of issues surrounding autism can improve

young adults success in accessing further education or work.

Effective use of online publicity attracts more people needing help with issues
surrounding autism.

Evidence of projects working:

repeat uptake of practical workshops and sourcing of new funding to continue

workshops;

positive initial user reaction to the pilot app;

a 20% increase in requests to the helpline during the project;
high enthusiasm of those taking part in organising their own activities;
greater understanding of young people in transition to adult life by education staff
following awareness-raising.

For further information contact: www.livingautism.co.uk

3.5 Capital funding of 3m was also

made available and 18,500 was allocated
to every local authority as the Autism
Capital Fund. The use of innovative
technology was encouraged to help
increase and maintain independence.
Equipment could also be purchased to help
people who have problems with speaking,
hearing, sight, moving about, getting out
and about, socialising, memory, cognition
(thought processes and understanding)
and daily living activities such as dressing
and preparing meals. Details of how funding
was used were asked for in the autism selfassessment exercise.

3.6 All service providers have an Equality

Act duty to make reasonable adjustments
and should think about technological
enablers as part of this. Providers of
specific specialist services to people with
autism should be exploring the use of
assistive technologies with the people they
support to help develop their confidence,
sense of achievement and independence.

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Progress Report on Think Autism: the updated strategy for adults with autism in England

Karen Kime, Change Manager at Stockport Council, outlines how the 18,500
was used there.
In Stockport, we were keen to invest the grant in projects that would:

add value or extend existing and planned projects;

encourage local groups to work collaboratively;
focus on building social and communication skills in ways that would help people
with autism find and retain employment.

Following a period of consultation, it was agreed that some of the funding would be
used to enable Pure Innovations to build additional soundproof radio studio space so
they could extend their National Open College Network-accredited Media Work Skills
course to people with high-functioning autism. The course started in April 2015 and
runs for two days a week for 48 weeks. It is designed to help students gain
transferable communication skills and to improve the employment rate for people with
autism. The course is supported by staff and volunteers from the in-house radio
station Pure 107.8FM (see: www.pure-radio.org/home/4587844803).
Most of the funding has contributed to the creation of an autism-friendly space in the
new premises that Stockport Advocacy (www.stockportadvocacy.org.uk/) have
recently acquired. Careful consideration has been given to soundproofing, decor and
lighting. Stockport Advocacy already host a group of young adults with autism
(Group 48) and they are involved in designing the space, which includes a small quiet
room as well as a larger ground floor meeting and activity space.
The purchase of 3DNovations software and laptops from Hao2 (www.hao2.eu/) has
enabled software designed by people with autism to be used for people with autism.
It enables people with autism to gain valuable 3D technology skills, and to use avatars
to begin to develop confidence to deal with a range of social and workplace
situations. People have been trained and supported to use the software and laptops.
Building on the individual projects that the Innovation Fund has funded, Pure
Innovations and Stockport Advocacy have worked together to enable people with
autism to develop skills and confidence in ways that suit them best. People can start
to use the Hao2 software at home, then meet up and use it alongside other people;
perhaps they can graduate to a media course, and maybe attend a town centre social
group where they can start to develop a support network of friends, as well as
professionals and other people who are active in their communities. The aim is for
people to move between organisations and projects at their own pace, and to build
sustainable relationships along the way. By working together, and in partnership with
adults with autism, the two organisations can facilitate and develop a much wider
range of experiences and options by pooling resources and expertise.

3. Making sure that people have a good experience of care and services

Both Pure Innovations and Stockport Advocacy are also applying for further funding
to extend the work that has already begun. The Autism Capital Fund has provided
seed funding to demonstrate what is possible and how future funding can add further
value in terms of developing services.
For further information contact: [email protected]

Autism Innovation Project at Dorset HealthCare

Dorset HealthCare wished to increase its ability to recognise and treat all service
users with sensory processing disorder and autism through the development of an
integrated care pathway, sensory therapy room and increased provision of Ayres
Sensory Integration Therapy.
Kate Hardy, Improvement and Experience Manager at Dorset HealthCare
University NHS Foundation Trust, sets out what they did.
The funding allocated from the Autism Innovation Fund has enabled a sensory therapy
suite to be installed at Dorset HealthCare University NHS Foundation Trust. The
existing physiotherapy gym has been converted at one of our community hospital
locations, Alderney Hospital, Poole, to provide a versatile room for Sensory Integration
Therapy. This room was identified as being suitable and will enable additional use to
be gained for physiotherapy as well as sensory therapy due to the installation of the
weight-bearing beam for hoists and swings. A usage plan was developed to ensure
that the room is utilised for the maximum time, allowing additional sensory therapy to
be provided across Dorset. Care pathways were reviewed to develop awareness of
the availability of Sensory Integration Therapy and to support speedy assessment and
intervention for new referrals.
Case study
E is a female in her 40s, married with a family and a full-time job. She was recently
diagnosed with Asperger syndrome. She was referred to the occupational therapy
team for management of sensory overload and development of strategies for
organisation. E had applied for a care package to manage some of her domestic
tasks due to disorganisation. She also feared losing her job due to her inability to
perform certain tasks.
The occupational therapy team intervention consisted of the formulation of a sensory
diet and some education to support her, as well as four sessions in the sensory
therapy room for direct therapy. The occupational therapist looked at dyspraxia and
retrained Es brain to be more organised, to perform simple planning tasks and to be
more coordinated.

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Progress Report on Think Autism: the updated strategy for adults with autism in England

The outcomes of the intervention were:

E cancelled the care package for domestic tasks as she was able to plan,
organise and complete tasks independently and without struggle.

Provision of in-work support and intervention resulted in E keeping her job and
having appropriate support in place to sustain employment.

Sensory diet and organisational strategies helped her in not feeling overwhelmed
and feeling able to cope with daily sensory input.

For further information contact: [email protected]

Autism awareness and

champions project
3.7 National charities and organisations
like Ambitious about Autism, the Autism
Alliance UK, Autism Plus, NAS and the
many smaller local and national
organisations and groups work to raise
awareness day in and day out. This makes
a real difference. The awareness and
champions project was an opportunity to
test out ways of working, and the Autism
Alliance UK were successful with their bid
[Think Autism Action 5].
3.8 The Autism Alliance UK Connect to
Autism project has:

worked across eight geographical

areas with national and local services,
venues and activities to provide people
who work in retail, leisure and public
services with information about how
they can make their buildings and
services autism friendly through
reasonable adjustments and providing
a supportive approach;
focused on developing partnerships in
some local areas to join up local
authorities, other partners, local
services, businesses, retailers and
people with autism;

worked with people with autism to

design an Autism Charter which
employers, retailers and service
providers can sign up to;

set up a Champions Network of people

who are committed to promoting
awareness both publicly and in
activities in their spheres of interest and
influence.

3.9 Progress achieved in Phase 1 of the

project can be found at www.autism
connect.org.uk. Phase 2 is subject to
approval but includes the development of
plans to support the autism third sector to
work on specific issues in partnership.
Details can also be found at the above link.

Action going forward

Progress Report (PR) Action 15.
Subject to approval, the Autism
Alliance UK to complete Phase 2 of the
autism awareness project, including
the development of plans to support
the autism third sector to work on
specific issues in partnership, by
March 2016.

3. Making sure that people have a good experience of care and services

Transforming care for people who

have autism
What people with autism want
I want people to recognise my autism
and adapt the support they give me if I
have additional needs such as a mental
health problem, a learning disability or
if I sometimes communicate through
behaviours which others may find
challenging.
3.10 From April 2015, the Health and
Social Care Act 2008 (Regulated Activities)
Regulations 201431 state that service users
must be treated with dignity and respect,
and in particular that a registered person
must have due regard to any relevant
protected characteristic (such as disability)
of the service user. These regulations also
state that care or treatment for a service
user must not be provided in a way that
includes discrimination against them on
grounds of any protected characteristic,
such as the disability of that service user.
3.11 People with autism or learning
disabilities who also have mental health
conditions or behaviours that challenge are
entitled to get safe, good quality care,
whether at home, in the community or in
hospital. However, studies and
investigations have found that too many
people with autism including those who
may have behaviours that challenge, or
complex needs continue to be placed in
hospital settings, including specialist
hospitals, for assessment and treatment. In

some cases they can be in hospital for

many years, often far from their home
community, and may receive poor quality
care.
3.12 Often a hospital environment is not
conducive to the needs of someone on the
autistic spectrum, where the environment
is a critical factor in meeting their needs.
Wherever possible, individuals should
receive the appropriate assessment,
treatment and support in a community
setting, and certainly in the least restrictive
setting possible. Having autism and/or
complex needs does not mean that long
term inpatient residential care or
assessment and treatment centres should
be used inappropriately or indefinitely.
No Voice Unheard, No Right Ignored
3.13 The previous government launched
this consultation in March 2015. It
concerned people with learning disabilities,
autism and mental health conditions, and
sought views on a range of proposals for
potential new primary legislation, changes
to existing primary and secondary
legislation, statutory guidance and other
non-legislative proposals. It was a wideranging consultation covering rights and
responsibilities across health, social care
and justice. The Government has
responded to the consultation by setting
out an ambitious programme that includes
some immediate actions, as well as a
commitment to tackling some of the more
complex issues over a longer timeframe.
The response32 is a statement of future
ambition and is part of an ongoing

31. See: www.cqc.org.uk/content/regulation-10-dignity-and-respect

32. Government Response to No Voice Unheard, No Right Ignored A consultation for people with learning
disabilities, autism and mental health conditions (November 2015). Available at: www.gov.uk/government/
uploads/system/uploads/attachment_data/file/475155/Gvt_Resp_Acc.pdf

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Progress Report on Think Autism: the updated strategy for adults with autism in England

programme. The Government will keep the

impact of guidance/proposals under
review, with a view to making further, more
binding, changes if the planned impact is
not being achieved.

3.16 Progress in recent months includes:

developing and undertaking care

reviews for people with learning
disabilities to support them moving out
of inpatient hospital settings and
prevent unnecessary hospital
admissions and lengthy hospital stays;

launching the Fast-Track programme in

five areas to test and accelerate service
redesign;

testing a new competency framework

for staff, to ensure that staff with the
right skills are in the right place;

ensuring more robust collection and

sharing of data to track progress.

Transforming Care
3.14 NHS England has set out a clear
programme of work with other national
partners, outlined in Transforming Care
Next Steps,33 to improve services for
people with learning disabilities and/or
autism, and drive system-wide change.
This will enable more people to live in the
community, with the right support, ideally
close to home. The Transforming Care
programme is jointly led by NHS England,
the Association of Directors of Adult Social
Services (ADASS), the CQC, the Local
Government Association (LGA), HEE and
DH, and focuses on the five key areas of
empowering individuals; right care, right
place; workforce; regulation; and data.
3.15 A progress report was published in
July 2015 outlining what has already been
delivered and setting out important
milestones for 2015/16. The report
acknowledges that, while progress has
been made, there is still much more to do
to ensure that, where appropriate, people
are cared for in the community and close to
home.

3.17 A national transformation plan was

published by NHS England, the LGA and
ADASS in October 2015 called Building the
Right Support: A national plan to develop
community services and close inpatient
facilities for people with a learning disability
and/or autism who display behaviour that
challenges, including those with a mental
health condition.34 A service model setting
out the key expectations and requirements
for local services was also published. All
local areas have been asked to reflect this
service model in their business plans for
2016/17.

33. Transforming Care for People with Learning Disabilities Next Steps (January 2015).
Available at: www.england.nhs.uk/wp-content/uploads/2015/01/transform-care-nxt-stps.pdf
34. Building the Right Support: A national plan to develop community services and close inpatient facilities for
people with a learning disability and/or autism who display behaviour that challenges, including those with a
mental health condition (October 2015). Available at: www.england.nhs.uk/wp-content/uploads/2015/10/
ld-net-plan-er.pdf

3. Making sure that people have a good experience of care and services

Mental Health Act Code of Practice

3.18 A revised Mental Health Act Code of
Practice35 came into force in April 2015. It
was prepared in accordance with section
118 of the Mental Health Act 1983. Chapter
20 of the Code addresses the key issues
from the Act and the Mental Capacity Act
2005;36 these are relevant to people with
autistic spectrum conditions in that they
require professionals to ensure the
independence and dignity of those they
treat and assess, and to show them
respect.

Action going forward

Progress Report (PR) Action 16.
The Government will keep the impact
of guidance/proposals in response to
No Voice Unheard, No Right Ignored
under review to ensure significant
progress is made between now and
March 2020.

3.19 Many people with autism who have

been detained under specific sections of
the Mental Health Act 1983 will require, and
be entitled to, aftercare. Discharge planning
for people with autism should begin when
the person is admitted, and should involve
health and local authorities working
together in the interests of the individual to
ensure appropriate community-based
support is in place before discharge. This
will require assessment by a practitioner
with expertise in autism.

35. Mental Health Act 1983: Code of Practice (January 2015). Available at: www.gov.uk/government/uploads/
system/uploads/attachment_data/file/435512/MHA_Code_of_Practice.pdf
36. See: www.legislation.gov.uk/ukpga/2005/9/contents/enacted/data.htm

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Progress Report on Think Autism: the updated strategy for adults with autism in England

4. Preventing people from having episodes

ofcrisis

4.1 Preventative support can do much to

give people with autism confidence and
reduce their levels of anxiety, allow them
independence and avoid crisis situations
linked to events in their lives. Such support
can be more cost-effective in relation to
more expensive interventions should a
crisis develop.

Supporting people with autism

What people with autism want
I want to know how to connect with
other people. I want to be able to find
local autism peer groups, family
groups and low level support.
I want to be seen as me and for my
gender, sexual orientation and race to
be taken into account.
I want to know that my family can get
help and support when they need it.
I want people to recognise my autism
and adapt the support they give me if I
have additional needs such as a
mental health problem, a learning
disability or if I sometimes
communicate through behaviours
which others may find challenging.

Care and support

4.2 Many people with autism do not meet
the criteria for social care support.
However, from April 2015 section 2 of the
Care Act placed a duty on local authorities
to provide or arrange preventative services
for people within their communities. In
discharging their duties on prevention, local
authorities should, in particular, ensure that
they are considering the needs of their local
adult population who have autism,
including those who do not meet the
eligibility threshold for care and support.
4.3 Preventative support can be provided
in many different ways. Many adults with
autism find it difficult to make friends. Userled and voluntary support groups help
adults with autism build relationships with
peers, friends, partners and colleagues
and also support independent living and
being part of the community. Such
provision should form part of a
comprehensive range of preventative
support and should be accessible and
provide choice for example, by ensuring
there are a number of support options
across a geographical area. Preventative
support and advocacy are also important
themes in the Care Act statutory guidance.

4. Preventing people from having episodes of crisis

Progress indicated in the 2014 selfassessment exercise

In total, 34 local authorities (22%)

reported having a single identifiable
point of contact where people with
autism could find autism-friendly
entry points to a wide range of local
services.
A total of 132 (87%) reported
having a recognised pathway for
people with autism but without a
learning disability to access a
community care assessment.
A total of 54 (36%) reported that
there was a programme in place
which ensured that all advocates
working with people with autism
have training in the specific
requirements of their role.
Some 73 local authorities (48%)
reported that adults with autism
have access to appropriately trained
advocates who can participate in
needs assessments, care and
support planning, appeals, reviews
and safeguarding processes.
A total of 141 local authorities (93%)
reported that people with autism
who are not eligible under Fair
Access criteria or not eligible for
statutory services for other reasons
can access support.
In total, 102 (67%) rated themselves as
green on offering assessments to
carers of people with autism who are
eligible for social care support. This
requires carers to be routinely identified
and offered an assessment themselves
following the assessment of anyone
needing support for autism who they
care for. They should also have the
option of requesting a carers
assessment, and information about
obtaining a carers assessment should
be clearly available.

4.4 If a person with autism is eligible for

adult care and support, personalised
approaches should be used to help them
identify their support needs, give them
greater choice and control and increase
their independence. Under the Care Act
adults have statutory rights to direct
payments and personal budgets as part of
their care and support plan, which can be
very useful for people with autism across
the spectrum to engage support, although
they may need help to manage this and to
access what they need.
4.5 DH has funded a three-year NAS
brokerage/personalisation project from
April 2013 to March 2016 under the
Innovation, Excellence and Strategic
Development Fund to help support people
with autism to get more personalised
support and develop a self-sustaining
model for the future. DH has engaged with
NAS throughout the project to ensure that
there is learning from the emerging
findings. [Think Autism Action 31]

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Progress Report on Think Autism: the updated strategy for adults with autism in England

Lesley Waugh NAS National Brokerage Coordinator, tells us about the National
Brokerage Project.
The project is based in Plymouth, Northants, Leicestershire, Newcastle, Greater

Manchester and their surrounding areas.

Support brokerage is about making sure that people with autism and their families get
support to plan and make choices. It enables people to get the life they choose and
get good support to meet their assessed needs. Support brokers develop plans with
the person, help in negotiations with local authorities and assist in the implementation
of the plan. Support brokers can also support the reviewing process.
The key aims of brokerage are:

to empower people who have autism and their families to understand social care
and health systems;

to share best practice;

to test and develop a sustainable model for the delivery of brokerage support.

to identify internal and external researchers and implement measures to quantify

satisfaction with brokerage support;

Outcomes include:

people with autism having increased self-esteem;

long-term cost savings for health and social care.

through community solutions, people get a life and not just a service;
people with autism having reduced social isolation and having choice and control
over support planning and processes;

Case study
T has high support needs and this would normally have meant her moving into a
residential setting. After using the brokerage service, T chose to stay at home and be
supported by her mother and specialist support workers rather than move into a
residential setting. Her budget was 30,000 per year. Ts choice of support has saved
the health and social care system 42,000 a year.
For further information contact: [email protected]
4.6 It is important that all people with
autism, whatever their level of need, can
easily access information in their local area
about what support from peers, charities
or other community groups is available.
The establishment and maintenance of a

service for providing people in their area

with information relating to care and
support for adults is a duty which was
placed on local authorities from April 2015
(under section 4 of the Care Act 2014).

4. Preventing people from having episodes of crisis

Mandy Shrimpton of Rainbow Autism Company of Community Interest (CIC)

provides details of the Spectrum Hub.
Rainbow Autism CIC is a social enterprise and a professionally independent
supporters led specialist support service. We currently provide support in the
Worcestershire area but have begun to develop our service in Herefordshire. Over our
five years of business we have identified the need for a menu of support and services,
collaboration between different disciplines and multi-agency working. As a result we
have developed a spectrum hub model that provides the basis for a variety of
support and services and gives us the flexibility to meet the fluctuating and complex
needs of those with autism.
The Autism Innovation Fund has enabled introduction of the hub model to allow our
highly experienced specialist professionals (including social workers, a counsellor/
psychotherapist and diagnostic assessment practitioners) and experienced support
staff to deliver early intervention and crisis management support and introduce group
projects to improve, promote or maintain greater independence and wellbeing. We
have worked with many people in crisis, some feeling suicidal, self-harming and/or at
imminent risk of homelessness or unemployment or at risk of harm from others and
feeling socially isolated.
Our hub has provided the following outcomes in six months:

received referrals from 106 individuals in total, supporting 76 (the others merely
required information or appropriate signposting) on a one-to-one basis to meet a
variety of needs, including crisis management (many of our members are at
significant risk of harm to themselves or others);

assessments of individual needs; advocacy and support to individuals on the

spectrum (and other professionals requiring information/support to maximise their
ability to help the individuals they were working with) to introduce or enhance
access to support and services required; providing or enabling access to
diagnostic assessments where required; supporting individuals to access benefits
they are entitled to; enabling access to vital services required (such as mental
health services, housing, employment support, etc.); providing specialist
counselling/psychotherapy to those with an identified need; delivering autism
awareness presentations (for example as part of our female group to enable
greater understanding of self);

introduced a weekly workshop, Skills for Meaningful Occupation, and as a result

have so far successfully supported four people into voluntary placements and one
into paid employment);

introduced a weekly social group. Some of the group are working with us to
develop an Autism Service User Reviewing Team to champion, review and offer
suggestions for reasonable adjustments to local services;

introduced a female group that meets regularly to socialise;

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Progress Report on Think Autism: the updated strategy for adults with autism in England

introduced a craft group in response to some service users interests and skills in
this area;

promoted collaboration with other professionals/agencies to enable a sharing of

resources, experience and expertise for a more holistic approach to support. This
has resulted in access to a cooking group with one of our associates;

attended local panels/a meeting with MPs, commissioners and housing providers
with the intention of raising awareness and advocating for the general needs of
those with autism, in order to gain more appropriate services;

begun to develop Rainbow Autism CIC support and services in Herefordshire.

For further information contact: [email protected]

4.7 It is critical to the vision in the Care
Act that the care and support system
works to actively promote wellbeing and
independence, and does not just wait to
respond when people reach a crisis point.
It is vital that the care and support system
intervenes early to support individuals,
helps people retain or regain their skills and
confidence, and prevents care and support

needs developing (or delays deterioration in

such needs) wherever possible.
4.8 DH has commissioned University
College London to carry out research on
low level support for people with autism
[Think Autism Action 9]. The first phase
of this work will report by March 2016.

Melanie Howard from Autism East Midlands provides an overview of its Autism
Innovation Fund project Enterprise for Autism.
Project aims and design
The Enterprise for Autism six-month pilot project was designed by Autism East
Midlands to support seven adults with autism in Nottinghamshire who do not meet
the eligibility criteria for statutory support. The project operated out of Autism East
Midlands Enterprise Hub in Worksop. The projects aims were:

to help participants develop vocational and independence skills in order to enable

them to progress to work experience placements during the life of the project;

to equip participants with the skills and experience to secure employment in the
future.

The project was designed to guide participants through three phases of development:

a baseline assessment of an individuals skills, knowledge, experience, needs and

aspirations, followed by vocational skills development at the Enterprise Hub;

a volunteer placement in a not-for-profit organisation to achieve a specific goal,

supported by staff from Autism East Midlands;

4. Preventing people from having episodes of crisis

a work placement with a buddy provided by the employer and trained by Autism
East Midlands.

Outcomes and achievements

During the course of the project, participants demonstrated increased self-confidence
and growing levels of independence. For example, one participant began his work
experience placement requiring staff to plan his journey to Sheffield, purchase his train
tickets and accompany him on the journey. By the end of his work placement, he was
happily making the journey independently.
By the end of the project, the following outcomes had been achieved by the eight
participants:

all undertook voluntary placements in not-for-profit organisations;

three had their work experience placements extended;

all undertook work experience placements, five of whom secured positive

references to support their applications for future employment;
two secured paid employment.

Maxine Rawling, a Health and Safety Training Manager for DHL who was involved in
the project, said: Our experience has been truly positive. J is a hard-working young
man and working with him has helped to dispel the stereotype of autism. Like many
young people, J just needed a chance.
The Enterprise for Autism pilot project faced a number of challenges, including:

unmet mental health issues and a number of participants (and their families)
struggling to come to terms with a relatively recent diagnosis of autism. The
original project design did not include clinical input from the Autism East Midlands
Psychology Team, which at the start of the project had only recently been set up.
Although clinical input was identified as a need for several people as the project
progressed, participants struggled to engage with the additional support offered.
With hindsight, the project design should have factored in the involvement of the
Psychology Team in the very early stages of the project so that participants could
get to know team members and recognise them as an integral part of the project
support team;

the need to be less prescriptive in the design of the three project phases, which in
practice became very bespoke for each individual;

flexibility in the location of the base for the project. Part-way through the project, a
second base (Nottingham) was introduced as an alternative venue to
accommodate participants preferences and needs.

For further information contact: [email protected]

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Autism Passports

Diversity

4.9 One of the things many people with

autism find both frustrating and distressing
is having to tell their story and explain what
adjustments make a difference to them
over and over again. Autism Passports are
a simple adjustment which allow people to
carry with them information about
themselves. They can play an important
role in enabling a person to share with
services what adjustments they need. DH
has worked with Baroness Angela
Browning and NAS, and an evaluation of
Autism Passports is currently taking place
[Think Autism Action 10]. From July 2014
to April 2015, the Autism Passport was
downloaded a total of 6,424 times by 4,959
users.37

4.10 More work will be taking place to

bring together groups and networks that
work on equality issues including race,
gender and sexuality with third sector
and other experts on autism to look at the
issues experienced by women, people who
are lesbian, gay, bisexual or transgender,
and members of Black, Asian and Minority
Ethnic (BAME) groups who have autism
[Think Autism Action 15]. Issues
discussed to date include GP
understanding, community awareness, the
use of inappropriate mental health
services, and sexuality across the
spectrum; these will be explored further in
three workshops to be held by March 2016.

Carol Povey from NAS outlines the Autism in Pink project.

The Autism in Pink project was an innovative project which aimed to understand and
improve the wellbeing of women on the autism spectrum across Europe. Funded
through the European Union Lifelong Learning Programme, the project focused on
the lived experiences of women from Portugal, Spain, Lithuania and the UK.
The women involved participated in structured workshops led by NAS, using the
Personal Wellbeing Index a standardised subjective quality of life framework with the
following domains:

37.

general satisfaction with life;

standard of living;
personal health;
achievements in life;
personal relationships;
personal safety;
community connectedness;
future security;
spirituality or religion.
Ford, S. Passport aims to help autistic patients communicate with nurses, Nursing Times (17 July 2014).
Available at: http://prod.nursingtimes.net/roles/learning-disability-nurses/passport-aims-to-help-autistic
patients-communicate-with-nurses/5073087.fullarticle

4. Preventing people from having episodes of crisis

The workshops also afforded the women the opportunity to develop a greater
understanding of themselves and their diagnosis in a supportive atmosphere. The
research indicated that these participants, when compared with their neurotypical
peers, scored lower across all domains; the overarching impact of anxiety and stress
was particularly highlighted. These results were used to develop an e-book, learning
materials and a documentary film.
The e-book and learning materials raise awareness of the challenges women with
autism face and offer potential strategies and solutions. They can be used and
contributed to by women with autism and anyone else who wishes to gain greater
understanding or provide support. This will be of interest to women and their families
and to educational, vocational, social and health care professionals.
Additionally, a study of prevalence in the four partner countries was undertaken,
showing the starkly contrasting rates of autism in those countries and highlighting the
importance of awareness and identification. In 2014, the women met with legislators in
each partner country and with members of the European Parliament in Brussels to
present findings on the ways in which the rights of women with autism are often
breached under current legislation and to propose solutions in terms of further work
and legislation. The project culminated in an international conference in Lisbon, which
attracted policy-makers, educators, family members and other autistic women in an
atmosphere of empowerment and celebration.
Since then, some of the women involved have presented the project findings across
the UK, including at the NASs women and girls conference. A number of them have
gone on to contribute to other initiatives, including research. The products produced
by the project are available in English, Lithuanian, Spanish and Portuguese on the
Autism in Pink website (www.autisminpink.net).
For further information contact: [email protected]

Older people
4.11 Older adults with autism are a
neglected group and have received less
attention through policy, research and
service provision. In part, this is because
autism was only identified in the 1940s and
the first generation of adults to be
diagnosed is only now moving into older
age. It is clear that approaches to older
people with autism will need to change and
develop. Older adults with autism
frequently rely solely on their families and

friends for support. Preventative services

will be particularly important for older
adults with autism who are not eligible for
social care support. Furthermore, special
consideration is needed when planning for
the transition into older age and the
increased likelihood of other health issues,
particularly when family may not be around
to support adults with autism.
4.12 A key challenge for many older
adults with autism is that they will have had
significant support from their families, but

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Progress Report on Think Autism: the updated strategy for adults with autism in England

as families age this becomes less possible.

The Care Act has put a duty on local
authorities to provide independent
advocacy where a person has substantial
difficulty in navigating the care system and
has nobody around to support them. This
will include some people with autism.
4.13 The House of Lords Autism and
Ageing Commission looked specifically at
the issues facing older people with autism
and, following this, in July 2013 NAS
published a policy report entitled Getting
On? Growing Older With Autism.38 Older
peoples issues were highlighted in the
autism statutory guidance [Think Autism
Action 25], with the key message for local

authorities and NHS bodies being that they

need to plan appropriate services for older
people with autism who live in the area,
and ensure that mainstream services used
by older people can be appropriately
accessed.

Black, Asian and Minority Ethnic

communities
4.14 People with autism from BAME
communities report the same issues with
accessing diagnoses and support, but
these issues can be compounded if their
local authorities find these communities
harder to reach. In July 2014 NAS issued

Lesley Waugh outlines work with the BAME community that is taking place as
part of the Calderdale Autism Development project.
We have attempted to engage the local mosques and community leaders. We have
held a number of drop-in sessions at mosques and GP surgeries and have also
worked with imams to raise awareness about autism through their Friday sermons.
Through the project lead we:

continue to meet regularly with BAME professionals at the working group;

explore other social support groups that are currently running;

liaise and work in partnership with Calderdale Council for Mosques;

liaise with all Calderdale mosques to raise awareness about autism after the Friday
sermon, including during World Autism Week;
liaise with mosques and health centres to arrange drop-in sessions;
set up a womens social support group;
liaise with the local NAS branch, Ravencliffe School, Calderdale College and
parents and carers.

For further information contact: [email protected]

38. National Autistic Society. Getting On? Growing Older with Autism: A policy report (July 2013). Available at:
www.autism.org.uk/~/media/NAS/Documents/Campaigns/Getting-on-Growing-older-with-autism/Getting
on - full policy report.ashx

4. Preventing people from having episodes of crisis

its report Diverse Perspectives,39 which

suggested ways that government and local
authorities can better meet the needs of
BAME families affected by autism.
4.15 In accordance with the autism
statutory guidance, local authorities, NHS
bodies and NHS Foundation Trusts should
be reaching out to BAME communities to
raise awareness of autism, for example
through champions in faith and other
community networks. The provision of
accessible information and consultation
with families are key. Local authorities,
NHS bodies and Foundation Trusts
should therefore ensure that information on
autism and support services is provided in
a range of languages, as appropriate, and
that translation and advocacy services are
available. Services should also be
available in appropriate locations and at
appropriate times.

Housing
Progress indicated in the 2014 selfassessment exercise

In total, 12 local authorities (8%)

reported that their local housing

strategies specifically referenced

people with autism and had

estimates of the numbers of

placements required in each

category.

A total of 25 local authorities (16%)

reported that they had at least one
staff member with training in autism
to help people make applications
and fill in necessary forms.

4.16 Housing can play a vital role in

supporting people with autism to maintain
good health and independence and improve
quality of life. From April 2015, section 2 of
the Care Act placed a duty on local
authorities to provide or arrange services,
facilities or resources (or take other steps) to
contribute towards preventing, delaying and
reducing the need for care and support of
adults in their areas. Sections 6 and 7 of the
Care Act require local authorities to ensure
the cooperation of their officers who
exercise care and support functions with
their officers who exercise housing
functions, both generally and in specific
cases, and provide for local authorities to
cooperate with other relevant partners or
persons, such as private registered
providers of social housing.
4.17 Further, local authorities will be
required to exercise their functions, under
section 3 of the Care Act, with a view to
ensuring integration between the provision
of care and support, health services, and
health-related services such as the provision
of housing, where they consider that doing
so would promote the wellbeing of adults in
their area with care and support needs,
contribute to the prevention or delay of the
development of such needs or improve the
quality of care and support for adults.

39. National Autistic Society. Diverse Perspectives: The challenges for families affected by autism from Black,
Asian and Minority Ethnic communities (July 2014). Available at: www.autism.org.uk/~/media/NAS/
Documents/Publications/NAS-Diverse-perspectives-report.ashx

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Progress Report on Think Autism: the updated strategy for adults with autism in England

Actions going forward

Progress Report (PR) Action 17. DH to take forward with University College London
phase 1 of research into low level support for people with autism, by April 2016.
Progress Report (PR) Action 18. DH and NAS to explore diversity issues further
and develop actions for going forward through three workshops to be held by March
2016.
Progress Report (PR) Action 19. NAS to issue the results of the Autism Passport
evaluation and next steps by June 2016.
Progress Report (PR) Action 20. DH and NAS to agree further action in relation to
the earlier NAS work on older people, involving other government departments and
public bodies as appropriate. By February 2016.
Progress Report (PR) Action 21. DH to agree with ADASS, the LGA and the
Department for Communities and Local Government (DCLG) how best to promote
the housing needs of people with autism, and best practice. By March 2016.

5. Joining up better the NHS, social care and other local partners

5. Joining up better the NHS, social care and

other local partners
5.1 It is crucial that, in meeting the needs
of people with autism, services and
agencies at a local level work together in
the best interests of such people.
Examples of this are in finding employment
and within the criminal justice system,
where a successful outcome is dependent
on autism being recognised and the
appropriate support given.

and intellectual ability to gain and maintain

employment if the necessary reasonable
adjustments are made in the workplace.
Progress indicated in the 2014 selfassessment exercise

In total, 40 local authorities (26%)

rated their performance on
promoting employment for people
with autism as green. These bodies
had included autism within their
local employment strategy or in a
disability employment strategy,
offering focused autism-trained
employment support, proactive
engagement with local employers
on the employment of people with
autism, and the engagement of the
local job centre in supporting
reasonable adjustments in the
workplace via Access to Work.

A further 92 local authorities (61%)

gave themselves the amber rating,
indicating that autism awareness is
delivered to employers on an
individual basis, local employment
support services include autism
and there is some contact with
local job centres in most areas.

Some 58 local authorities (38%)

made detailed reference to
employment in their guidance on
the transition to adult services.

Employment for adults with autism

What people with autism want
I want support to get a job and support
from my employer to help me keep it.
5.2 The 2010 autism strategy and Think
Autism included commitments aimed at
increasing the number of adults with autism
in work through the provision of guidance
and training to employers and employment
support services, and ensuring adults with
autism benefit from employment initiatives.
DWP has sought ways to improve access
to its services and has responded
positively to the commitments outlined in
Think Autism, undertaking a significant
amount of work to improve service
provision for people with autism, such as
those with Asperger syndrome and/or
associated hidden impairment conditions
including ADHD, dyslexia, dyspraxia,
dyscalculia and speech and language
difficulties. DWP recognises that many
people with autism have the skills, talent

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Progress Report on Think Autism: the updated strategy for adults with autism in England

DWP action plan

5.3 In March 2014, DWP hosted an event
prior to the publication of Think Autism in
partnership with DH and NAS which
involved disabled people, disability-specific
organisations and other interested
stakeholders. Discussions took place on
ways to improve DWP services for people
with autism and recommendations were
made which helped to develop an Autism
Strategy Action Plan, which became part of
Think Autism [Think Autism Action 33].
5.4 That plan focused on three strategic
areas:

autism awareness training for DWP

staff/managers;

promotion of the autism agenda to the

employment support provider
community to ensure that reasonable
adjustment solutions are identified/
implemented at the earliest possible
stage;

promotion of the autism agenda to the

business community, seeking to
increase work opportunities for people
with autism and associated hidden
impairment conditions.

5.5 DWP regularly reviews the action

plan, working with key stakeholders to
identify ways to make further progress and
build on achievements to date. DWP has
undertaken an internal survey to help
Jobcentre Plus managers assess their
local capacity to fully support people with
autism and associated hidden impairment
conditions. The survey, which was
completed by staff in varying job roles
across the UK, enabled DWP to capture
robust evaluation information that can be
used to better support the development of
improved services for claimants. Utilising
the findings from the survey, DWP is

working in collaboration with key

stakeholders to:

build an Autism Network across all

Jobcentre Plus offices, to be completed
during 2015/16 and 2016/17;

upskill the autism knowledge and

awareness of staff involved in the
Personalisation Pathfinder pilots, to be
completed during 2015/16;

develop an autism e-learning tool for

staff/managers, to be completed in
2016/17.

5.6 The training specification developed

by DWP has taken into account the
learning from the autism awareness pilot
initiatives delivered by NAS and Autism
Plus [Think Autism Action 32].

Other DWP work

5.7 DWP is working to ensure that Work
Choice providers receive timely, relevant
and pertinent information at the point of
referral, so that they may more accurately
identify individuals with autism. This will
enable them to recognise, prepare for and
provide the most effective support for job
seekers, putting in place reasonable
adjustment solutions as appropriate. The
referral process is based on voluntary selfdeclaration of disability. The improved
Work Choice referral process for people
with autism will be in place from
October 2015.
5.8 DWP is also keen to develop
opportunities for job shadowing and
internships. On the 2014 International Day
of Disabled Persons (3 December), DWP
announced the introduction of a job
shadowing work placement initiative for
young disabled people, specifically
encouraging the involvement of young

5. Joining up better the NHS, social care and other local partners

people with autism and learning disabilities.

In total, 100 work placement opportunities
were made available across the country, in
a variety of sectors and in workplaces
ranging in size from small firms to large
corporate organisations. The pilot will be
evaluated by DWP and decisions will be
made about future activity.
5.9 DWP is looking at ways to develop an
autism internship programme for people
with autism by December 2015, which will
encourage DWP staff to get more involved
in its work programme for people with
autism. A DWP official has been seconded
to Adviser Plus, based in North West
England. This arrangement, which
supports the upskilling of human resource
professionals, has enabled DWP to
promote the Disability Confident agenda to
the wider business community (including
small and medium-sized enterprises),
focusing on the positive promotion of
recruiting and retaining people with autism
and associated hidden impairment
conditions. DWP is also working in
partnership with Carillion plc, supporting
them to improve the retention rates of

young apprentices with autism and

associated hidden impairment conditions.
5.10 In June 2015, DWP and DH
co-hosted a meeting of eight of the Autism
Innovation Fund projects that have an
employment focus, in order to share their
outcomes and experiences with officials
from DfE and BIS. Practical suggestions
were made about initiatives such as
supported internships, applications for
Access to Work, and educational
qualification criteria being used to access
apprenticeships locally.

DH/DWP Joint Unit

5.11 In the summer of 2015, DWP and DH
established a new, innovative unit to
improve employment outcomes for people
with health conditions and who are
disabled, in order to contribute towards
halving the disability employment gap. This
Work and Health Joint Unit will explore how
best to support people with autism to find
and stay in work, while also improving their
health.

Dr Beatriz Lopez from the University of Portsmouth summarises the Autism

Centre for Employment project.
The grant awarded from the Autism Innovation Fund to the Department of Psychology
at the University of Portsmouth has been used to create an innovative service to help
people with autism into employment at the Autism Centre for Employment (ACE). The
team and I are working in partnership with Portsmouth, Hampshire, Southampton
and Isle of Wight Councils.
What is ACE?
ACE takes a unique approach to employment for people with autism. The service has
been designed to:

meet the latest NICE guidelines;

address the needs identified by carers, adults with autism and practitioners in a
wide-ranging consultation exercise carried out by our team in 2014;

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Progress Report on Think Autism: the updated strategy for adults with autism in England

apply our own research findings, which highlight the large heterogeneity of
cognitive profiles, and therefore individual needs, in this particular population.

Development of employment-specific assessment tools

We developed and piloted a set of quantitative and qualitative tools specifically
designed for work settings. The tools evaluate the individual employment profile
(career preferences and employability skills) and individual cognitive profile (social and
communication skills, sensory issues and flexibility) of each client. Both clients and
employers receive a summary report detailing the strengths of the client and
recommendations for minor adjustments.
Person-centred employer training
We piloted an innovative training protocol for employers. Employers offering work
placements have received person-centred training about their particular employee on
the basis of that employees individual employment profile.
Supported work placements
We have provided 18 eight-week placements, which are supported by mentors. Each
placement has been sought to match the preferences and strengths of the client with
autism. The originality of ACE is that, in the work programme, the employers are
trained to eventually become mentors of the employees.
Evaluation of the service
This innovative approach has demonstrated a cost-effective means of delivering work
placements. By week 3, the employees only needed, on average, one hour of support
a week from the mentors. This reduced support did not result in less satisfaction:
100% of employers and over 80% of employees were very satisfied with the scheme.
More importantly, there was a significant increase in self-esteem, confidence and
wellbeing.
What next?
An online assessment service is to be rolled out nationwide. We have secured further
funding from Research Autism to pilot an online version of the service so we can
deliver our services nationwide. This service will be offered to employers, employees
with autism, young adults with autism about to leave the education system, and local
authorities. We are currently discussing a collaboration with the City Deals
programme (Portsmouth and Southampton) to extend the service to people with
learning disabilities.
Research database
The website will include a searchable database of all research articles on employment
and autism from 1990 to date.
For further information contact: [email protected]

5. Joining up better the NHS, social care and other local partners

The Hidden Impairment National

Group
5.12 DWP developed the Hidden
Impairment National Group (HING) in
response to issues about DWP service
provision for people with autism and
associated hidden impairment conditions.
The group comprises disabled people with
autism and associated hidden impairment
conditions, medical professionals/
academics, and disability-specific
organisations such as Autism Plus, NAS,
the Discovery Centre, the Dyslexia
Foundation and Complex Minds.
5.13 HING originally focused on
improving DWP service provision for
people with autism, offering practical
advice and guidance. It has been reformed,
and going forward is being facilitated and
chaired by Philip Bartey (CEO of Autism
Plus), having a cross-government remit
that will support the development of
inclusive government policy. DWP will
remain closely involved with the group and
will continue to explore ways to improve
services and increase job opportunities for
people with autism.
5.14 In support of this agenda, HING has
undertaken a range of practical activities,
including:

development and implementation of a

comprehensive Hidden Impairment
Toolkit, available to all DWP staff to help
them better understand how they can
support people with autism and
associated hidden impairment
conditions. This learning and
development resource has been
shared with Autism Programme Board
members and has been promoted as
part of the Accessible Britain
campaign. It has also been shared with

Actions going forward

DWP will work co-productively with the
Autism Alliance UK and other partner
organisations to:
Progress Report (PR) Action 22.
Develop an Autism Network across all
Jobcentre Plus offices, providing
autism and associated hidden
impairment training to nominated staff
who will lead on this agenda. By April
2017.
Progress Report (PR) Action 23.
Deliver autism training to all staff
involved in the Personalisation
Pathfinder pilots in Greater Wessex,
South West Wales and Surrey and
Sussex. By October 2016.
Progress Report (PR) Action 24.
Develop an autism e-learning training
package for staff and managers that
will support a better understanding of
autism and how best to support
people with autism into work. By
December 2016.
Progress Report (PR) Action 25.
Continue to support the work of HING
and together explore ways to
encourage employers to recruit and
retain people with autism and
associated hidden impairment
conditions. Review at the end of 2016.
Progress Report (PR) Action 26.
Review the autism action plan by the
end of 2016 against the key priorities in
Think Autism, take action on
outstanding issues and provide
support to other government
departments.

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Work Choice providers and employers

at Disability Confidence employer
events, and is available to other
organisations via the HING website;

delivery of a number of employerfocused events aimed at promoting the

skills and talents of disabled people
and in particular individuals with autism
and associated hidden impairment
conditions;
development and implementation of the
HING website (http://hing.org.uk),
managed by Autism Plus, which offers
information to employers and other
organisations.

What adults with autism want

I want to be safe in my community and
free from the risk of discrimination, hate
crime and abuse.
If I break the law, I want the criminal
justice system to think about autism
and to know how to work well with
other services.
Progress indicated in the 2014 selfassessment exercise

In total, 17 local authorities (11%)

gave themselves a green rating for
work with the criminal justice
system. This was based on people
with autism being included in the
development of local criminal
justice diversion schemes:
representatives from criminal
justice system agencies regularly
attend meetings of the local autism
partnership board and there is
evidence of joint working.

A further 85 local authorities (56%)

gave themselves amber ratings,
indicating that discussions were
under way to improve criminal
justice system involvement in
planning for adults with autism.

A total of 32 local authorities (21%)

rated themselves as green on
whether access to an appropriate
adult service is available for people
on the autistic spectrum in custody
suites and nominated places of
safety, with staff who have had
autism awareness training. Some
107 local authority areas classed
themselves as amber, meaning that
appropriate adults have not
necessarily had autism
awareness training.

Contact with the criminal justice

system
5.15 A Cross-Criminal Justice System
Government Group, chaired by the MoJ,
was set up in spring 2014 and now meets
quarterly to discuss work across the
criminal justice system to improve services
for people with autism, including progress
with commitments under the autism
strategy. Membership includes MoJ, the
Home Office, the Crown Prosecution
Service (CPS), the Youth Justice Board,
the National Offender Management
Service (NOMS), the National Police
Chiefs Council (NPCC) which was formerly
the Association of Chief Police Officers or
ACPO, DH and NHS England, as well as a
number of special interest bodies (including
NAS) and self-advocates. Meetings cover
issues such as training and awareness,
screening, reasonable adjustments, and
the use of IT systems to better support
people with autism [Think Autism
Action 26].

5. Joining up better the NHS, social care and other local partners

The Crown Prosecution Service

The Police National Computer

5.16 The CPS launched an autism guide

for prosecutors in April 2015. This provides
basic information and signposting in
relation to issues arising from a victims,
witnesss or defendants perspective. To
produce the guide, the CPS set up training
sessions and sought feedback from
prosecutors and further specialists,
including NAS [Think Autism Action 13].

5.19 The NPCC has agreed to use an

existing flag on the Police National
Computer (PNC) to identify people with
autism. Consideration is now being given
to what information should usefully be put
onto the PNC under the flag (given that
there is limited space and a finite number of
characters); this may include, for example,
risk assessment criteria and a simple
paragraph alerting the user to the fact that
the individual has autism and may need
additional support/adjustments. Once this
has been resolved, the NPCC aims to
circulate national guidance. There is also a
longer term plan to accommodate similar
details in relation to victims in a more
appropriate format in a new generation
PNC to be developed over the next
few years.

The College of Policing

5.17 The College of Policing is working
with the Home Office to deliver
recommendations for improvements to the
police curriculum, including developing a
new module of Authorised Professional
Practice for the Police Service [Think
Autism Action 27]. This product will be the
primary electronic resource for information
regarding the legal and appropriate
response to all incidents involving people
with mental health and learning disabilities
(including autism). This will fully replace and
supersede the 2010 ACPO guidance on
mental health and learning disabilities. It will
include some additional guidance on
vulnerability assessment and strategies for
interacting with individuals who may have
difficulties with communication and/or
processing information, and who require
reasonable adjustments. The guidance will
be issued by February 2016.
5.18 In addition, a new package of
training is being developed which includes
modules for all staff, first response officers,
specialists and leaders. This work has
highlighted the requirement to understand
the extent to which police training will need
to include condition-specific awareness,
and autism is part of this. Training products
will be ready for implementation nationally
by the end of June 2016.

The police
5.20 MoJ has been working with the
Home Office and the CPS to develop a
new Police Service guide to help officers
identify, at the first opportunity, people who
may need support or special measures to
give evidence. The aim is to issue this
guide by February 2016.
5.21 Support services are now
commissioned locally by police and crime
commissioners, rather than central
government. This means that they can join
with local commissioners of health and
social care to ensure a shared approach to
support provision for victims and witnesses;
the statutory guidance that supports Think
Autism outlines the importance of this.
There is guidance available through the Bar
Council and the Law Society about how to
question a witness. Specifically, the
Advocacy Training Council has produced
toolkits covering autism.

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Progress Report on Think Autism: the updated strategy for adults with autism in England

5.22 The NPCC lead for disability has set

up three new communities of practice to
spread learning across the police. One of
these covers autism, and Hampshire
Constabulary is leading on this work on
behalf of the national lead, Chief Constable
Simon Cole. Best practice approaches
being trialled include an autism alert card
and a mobile phone app that can hold
information about a person with autism,
including ways of helping them to deal with
difficult situations. The NPCC will consider
whether and how this best practice will be
rolled out nationally through the College of
Policing. Alongside this, Hampshire
Constabulary is looking to expand the use
of widget sheets, which are a set of Easy
Read forms designed to provide an
explanation of the legal paperwork used in
custody; see: https://widgit.com/.

Offender management
5.23 As a result of the probation reforms
undertaken in the last Parliament,
21 Community Rehabilitation Companies
(CRCs) were established to deliver
rehabilitation services in England and Wales
for low and medium risk offenders. A new
National Probation Service (NPS) was also
created to manage those offenders
assessed as being at high risk of serious
harm to the public, or those released from
custody who have committed the most
serious offences. The introduction of
payment by results and a clear focus on the
achievement of outcomes, coupled with
greater competition for offender services, is
intended to offer real solutions to some long
standing problems. We expect to see
innovative responses from the new providers
to help address some of the causes of
crime, with targeted support for offenders to
help with specific needs. Probation
providers are supported in this by the work
of the Probation Institute.

5.24 Staff from the Bristol,

Gloucestershire, Somerset and Wiltshire
CRC and their local colleagues in the NPS
have been working in conjunction with the
social enterprise group SEQOL and autism
experts to improve their services for people
with autism. The group won a national
autism award in May 2015 for this project.
5.25 Children under the age of 18 are
managed by youth offending teams based
within the local authority, and local
authorities can play an important role in
raising awareness of how to work with
autistic young people among these teams.

The Probation Institute

5.26 One of the Probation Institutes
earliest priorities was creating a broad
professional network for mental health
workers in the criminal justice system,
which included a commitment to providing
training and awareness-raising on lifelong
developmental conditions such as autism.
The Institute is now looking to extend
training days to Probation Institute
members, and several regional events have
taken place, delivered in partnership with
Key-Ring. In addition, the Institute held an
equality and diversity conference in Bristol
in March 2015, which featured a workshop
on addressing the needs of service users
with autism [Think Autism Action 30].
5.27 The Probation Institute will continue
to promote best practice relating to
addressing the needs of those with lifelong
developmental conditions, and will explore
funding opportunities to help it deliver
autism training and research to its
members. The Institute has also launched
the Probation Institute Register and the
professional networks functionality, which
are part of a new professional development
project. One of these networks is to focus

5. Joining up better the NHS, social care and other local partners

on health partnerships. Joining the

Probation Institute Register allows
members to demonstrate their
professionalism and provide evidence of
their qualifications and experience.

England. A revised liaison and diversion

specification, which includes autism, will be
issued by the end of January 2016.

5.28 A number of publications and links

concerning autism were placed in the
Institutes Data Room to inform CRCs
(private sector providers of probation
services) bidding for new contracts prior to
the submission of bids in 2014 [Think
Autism Action 30].

5.31 MoJ has continued to support the

spreading of best practice across both
private and public prisons. As an example
of examining and sharing good practice
[Think Autism Action 28], NAS has been
working with Feltham Young Offenders
Institute to develop Autism Accreditation
standards for prisons. This includes
standards for the education provider, the
primary care and mental health providers
and the prison itself. Feltham is aiming to
achieve accreditation in the first quarter of
2016. In addition, NAS extended the pilot
to take into account the adult prison estate
and started work with three other prisons
Parc, Wakefield and Dovegate in June
2015. All four parts of the prison (as
detailed above) are required to work
collectively to improve support for people
with autism and, if successful, will result in
the whole prison receiving accreditation.

Liaison and diversion

5.29 Liaison and diversion services have
been developed to provide early
interventions for all people identified as
having a range of vulnerabilities, including
autism, as they come to the attention of the
criminal justice system, with the aim of
referring them to appropriate treatment or
support. Liaison and diversion services
provide a prompt response to concerns
raised by the police, youth offending teams
and court staff, and provide critical realtime information to decision-makers in the
criminal justice system when it comes to
charging and sentencing these vulnerable
people. This may result in a diversion away
from the criminal justice system, or from a
prison sentence to a community order with
a treatment requirement.
5.30 NHS England is working with DH,
MoJ and the Home Office to trial a centrally
commissioned model and is submitting a
full business case to HM Treasury. In total,
10 trial sites were launched in April 2014
and another 15 went live in April 2015,
bringing coverage to over 50% of England.
The aim, subject to agreement of the full
business case, is for NHS England to roll
out the services to the whole population of

Prison and other forms of custody

5.32 The standards cover a number of

areas, including training on autism given to
staff and how it affects their practice;
looking at the admissions process to see if
it takes account of autism screening; and
the environment of the prison for
example, whether there can be flexibility in
the activities of an autistic prisoner, if
appropriate. It also looks at release. Three
National Probation Service/Community
Rehabilitation Companies and three police
forces are now working with NAS to
develop accreditation schemes based on
the prison scheme. The prison pilot is still
ongoing and lessons are being learned and
acted upon as work progresses.

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Progress Report on Think Autism: the updated strategy for adults with autism in England

5.33 The Minister for Prisons, Probation,

Rehabilitation and Sentencing, Andrew
Selous, visited Feltham in March 2015 and
subsequently wrote to all prison governors
and directors to encourage them to
consider working towards Autism
Accreditation status. By October 2015 NAS
had received over 20 enquiries from other
prisons interested in working towards
accreditation.
5.34 Autism and learning difficulties are
covered under the refreshed Young
Offender Institution training on working with
young people in custody. This includes
content on autism within the Youth Justice
Boards e-learning platform, Youth Justice
Interactive Learning Space. An assessment
of functional skills for all adult prisoners has
been mandatory since August 2014 [Think
Autism Action 29].
5.35 NOMS-funded work in 2013/14 to
improve outcomes for offenders with
learning disabilities has resulted in the
production of autism awareness pocket
guides for staff and a web-based toolkit.
Further work was commissioned in
2014/15, which has led to the development
and testing of a tool to help offender
managers identify specific communicationrelated needs and plan how to meet them.
This includes considering the
communication needs of offenders
with autism.

5.36 Further work is planned in 2015/16

to support the wider ambition of making
communication accessible. This includes
testing peer-led models to identify, adapt
and quality-assure written communications
in Easy Read format.
5.37 NOMS has designed a range of
accredited programmes for offenders
which aim to reduce reoffending.
A specially designed suite of programmes
has been developed for intellectually
disabled sexual offenders which are also
applicable to some people who have
autism. These programmes are available
for commissioning in both prisons and the
community. NOMS is extending its
provision of programmes for this group.
A new intervention which aims to reduce
reoffending by helping participants to
develop skills in the areas of problem
solving, self-control, positive relationships
and goal setting has recently been piloted
for general offenders. The programme was
piloted in three mens prisons (HMP
Whatton, HMP Wymott and HMP
Wakefield) and the intention is to deliver
further pilots and seek accreditation from
the Correctional Services Accreditation
Panel. The needs of high-functioning
autistic individuals would be determined on
a case by case basis. Adjustments would
be made to ensure that treatment provision
was responsive to individual needs.

5. Joining up better the NHS, social care and other local partners

Actions going forward

Progress Report (PR) Action 27. Development of a comprehensive package of
training by the College of Policing, to be implemented by the end of June 2016.
Progress Report (PR) Action 28. The NPCC is exploring the opportunities to create
a new vulnerability marker to be added to the Police National Computer to replace
the previous mental and ailment markers, which were created in the 1960s and
were subsequently outdated and inappropriate. The new marker will be used to
record many different vulnerabilities including an autism spectrum diagnosis and will
be developed within the upgrade to the PNC system due by June 2016.
Progress Report (PR) Action 29. MoJ has been working with the Home Office and
the CPS to develop a new Police Service guide to help officers identify people who
may need support or special measures to give evidence. The aim is to issue this
guide by February 2016.
Progress Report (PR) Action 30. A forum took place in November 2015 involving
the Disability communities of practice and the NPCC lead to discuss both the
progress of the (now widely available) autism phone app and widget sheets. It was
shared that Hertfordshire Police have developed their own version of easy-to-read
custody sheets. The projects will be presented to the NPCC custody lead with a view
to encouraging all police forces have easy-to-read sheets within their custody suites
by June 2016.
Progress Report (PR) Action 31. NHS England to issue a revised liaison and
diversion specification, to include autism, by end of January 2016.

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Appendix A

Actions from Think Autism (2014)

Number Action

Lead

Timescale

Issue statutory guidance to support the

updated strategy. [page 9]

DH

December
2014

Advertise for new members to join the Autism DH

Programme Board. [page 7]

By end of
Summer 2014

Publish a summary of progress. [page 7]

DH

August 2015

Provide further information on the Autism

Innovation Fund. [page 39]

DH

By end of
June 2014

Provide further information on the Autism

Awareness and Champions programme.
[page 44]

DH

By end of
June 2014

Issue a guide on how to include young

people with autism in the development of the
local offer. [page 23]

NAS (funded
by DfE)

Summer 2014

Issue the 3rd Autism self-assessment

exercise for local areas. [page 10]

November
Public Health
2014
England,
supported by
DH, NHS
England,
Association of
Directors of Adult
Social Services,
and the Local
Government
Association

Bring together information on progress locally

in a single place digitally so that it is easily
accessible and people with autism can rate
services, and to allow comparison. [page 10]

By end of
Public Health
March 2015
England, with
support from DH,
NHS England
and NAS

Actions from Think Autism (2014)

Number Action

Lead

Timescale

Explore the feasibility of research to review

the effectiveness of low level interventions
aimed at adults with autism who do not meet
Fair Access to Care Services (FACS) social
criteria. [page 52]

DH

By end of
March 2015

10

Assist with the promotion of Autism

Passports being developed by Baroness
Browning and NAS. [page 54]

DH

By end of
March 2015

11

Staff in DH to have access to training on

autism and work with DHs arms length
bodies on including autism in their equality
and diversity training. [page 19]

DH

By end of
December
2014

12

Guidance and e learning products developed DH

as a result of the strategy to be publicised
across government departments. [page 18]

June 2014

13

Develop an aide-memoire and support

material for prosecutors, highlighting key
issues, implications for the prosecution
process and sources of support for people
with autism. [page 65]

Autumn 2014

14

Report on their review of bus driver disability Department for

awareness training to the Autism Programme Transport
Board. [page 20]

March 2015

15

Bring together other equality groups and

networks with autism groups to (i) build
partnerships and (ii) gather case studies.
[page 54]

March 2015

16

Issue guide summarising recent guidelines on Joint

September
2014
autism diagnostic commissioning. [page 38] Commissioning
Panel of the
Royal Colleges of
Psychiatrists and
GPs

17

The Autism Programme Board to be updated NHS England

and Care Quality
by NHS England on how it is driving up
quality in autism diagnostic services, and by Commission
the CQC in its wider statutory role in primary
and secondary care in driving up quality.
[page 38]

CPS

DH

By end 2014

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Progress Report on Think Autism: the updated strategy for adults with autism in England

Number Action

Lead

Timescale

18

Through the RCGP autism clinical priority

programme look at the feasibility of
introducing a Read Code for Autism.
[page 12]

DH, NHS
England and the
Royal College of
GPs

March 2017

19

Establish a data and information working

DH and Public
group to include DWP, DfE and others to
Health England
report to the Autism Programme Board on
available data sources for LAs on people with
autism. [page 12]

November
2014

20

Commission the scoping and development of DH

a comprehensive Continuing Professional
Development (CPD) framework for social
workers, with an early priority being the
development of CPD materials to improve the
knowledge and skills of social workers
working with people with autism. [page 20]

December
2014

21

Provide support to update the e learning

training developed under the 2010 strategy.
[page 18]

DH

March 2015

22

Ensure that the LA autism self-evaluation

includes carers. [page 10]

DH

To be issued
in November
2014

23

Report to the Autism Programme Board on

the wider changes to the SEND reforms and
related issues for people with autism.
[page 22]

DfE

To agree
issues to be
reported back
on by end of
June 2014,
and to report
back by
March 2015

24

Seek feedback on the type of

apprenticeships being offered to people with
autism, and discuss the findings and issues
further with BIS. [page 32]

DH/ Department
for Business,
Innovation and
Skills

By September
2014

25

Work with NAS so the findings from their

DH
report Getting on? Growing older with autism
are embedded across future work. [page 56]

March 2015

Actions from Think Autism (2014)

Number Action

Lead

Timescale

26

Establish a cross-government group to

Ministry of
consider and take forward issues to do with
Justice
autism and the criminal justice system and
report on progress to the Autism Programme
Board, including issues such as training and
awareness, screening, reasonable
adjustments, and the use of IT systems to
better support people with autism. [page 64]

By the end of
2014/15

27

Work with the College of Policing to update

Home Office
and add to its mental health e learning
training which includes autism for new police
officers, look at evidence-based advice for
managing autism within justice settings, and
whether the markers on local police force
systems used for offenders with mental
health or learning difficulties can be extended
for those with autism. [page 65]

By end of
October 2014

28

Examine and share good practice in prisons

towards prisoners with autism. [page 67]

29

Report back to the Autism Programme Board National Offender During

on the impact that the mandatory
Management
2015/16
assessment of functional skills for all
Service
prisoners from August 2014 has had on
identifying prisoners with autism. [page 68]

30

Consider whether autism awareness training

can be built into the work of the new Institute
of Probation, and, where appropriate, look to
place relevant information in to the
Transforming Rehabilitation data room.
[pages 66 and 67]

Ministry of
Justice

End of March
2015 and end
of April 2014

31

Evaluate the NAS brokerage and

personalisation project with other
stakeholders in order to embed learning in
developing further models. [page 49]

DH and NAS

December
2016

32

Respond to the results of NAS pilot on new

training in autism for disability employment
advisers. [page 60]

DWP

May 2014

National Offender During

Management
2014/15
Service

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Progress Report on Think Autism: the updated strategy for adults with autism in England

Number Action

Lead

Timescale

33

DWP

November
2014

Produce an action plan based on the

outcomes from the DWP/DH/NAS autism
and employment event in March 2014 and
report back to the Autism Programme Board
on progress made in taking forward
operational changes and reasonable
adjustments to enable people with autism to
have better access to job opportunities.
[page 60]

Autism Innovation Fund projects

Appendix B
Autism Innovation Fund projects
Project name Organisation and Funding (k) Description
location
Autism Innovation Fund Projects (Third Sector)
Advice and information
Red2Green

In the Spectrum
Cambridge

12.9

30 young people will participate in

creating the content for 10 short
information films about autism and
Asperger syndrome to improve
awareness and help people get
support.

Leeds Autism
AIM

Leeds Advocacy

20

A new service providing advocacy,

information and mentoring for autistic
adults to enable them to better access
mainstream services.

Enabling
Autism

Taunton & District

Citizens Advice
Bureau

34

A facilitation service to improve access

to advice and information services for
people with autism and their families,
and bridging the gap between
specialist and mainstream services.

ALAG Peer
Support
Planning and
Brokerage
Project

Asperger London
Area Group
(ALAG)

17

To train six peer support brokers with

Asperger syndrome to help others plan
the support they need and to provide
advice and information.

Fulfilling
Futures, life
after school

Telford and Wrekin 19.7

Council for
Voluntary Service

Develop a transition outreach service

with local partners, offering targeted
preventive social welfare support
around life after school to young
people with autism.

Living with
Autism

Living Autism
UK wide

To produce practical information and

strategies to address daily difficulties
by people with autism, working
through a consortium of local and
national charity groups.

36.5

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Progress Report on Think Autism: the updated strategy for adults with autism in England

Project name Organisation and Funding (k) Description

location
Connecting
with Autism
Community

Autism West
Midlands

50

Updating and upgrading the existing

social network for Autism Connect so
it can provide more information and
advice across England. This website
will act as a digital platform for the
national self-assessment data.

Gaining and growing skills for independence

College
Without Walls

New Ideas
Advocacy Project
Warwickshire

14.7

Courses on helping people with autism

to be life resilient and manage their
own money.

NAS HelpTech NAS

for students
UK-wide
with autism

66

To use cloud-based services to allow

real-time users and mentors to track
and understand situations, issues and
anxiety levels for each day using
smartphones and tablets.

Luv2MeetU
Inclusion for
People with
Autism

Luv2MeetU
Bradford

13

A review of up to 40 social and active

based events that take place each
month so that a good practice model
is established to best help people with
autism develop confidence in social
situations.

Enterprise for
Autism

Autism East
Midlands

40

Pilot to support adults with autism who

do not meet the eligibility criteria for
statutory support and help with
vocational and independence skills.

3
Good Food for Asperger
the Soul
Syndrome Access
to Provision
Harrow

Two 3-hour sessions per month for

10 clients per session over six months
teaching basic nutrition, budgeting,
menu planning and the effects of poor
diet on health.

Independence Black & Minority

Support
Ethnic Carers
Support Service
London

25

Delivering culturally appropriate,

ethnically sensitive and flexible support
to meet the needs of people with
autism towards increasing life skills and
being independent.

Understanding Bury College

Autism

50

Accredited training for staff, more

tailored classes for people with autism
and awareness work.

Autism Innovation Fund projects

Project name Organisation and Funding (k) Description

location
Autism Angels Learning to Listen 15
and Autism Angels
Wetherby

Increasing the reach of a service using

horses as therapy.

Create and
Sell, Autism
Manchester
Initiative

Alice Darlington
10.8
Funding to be held
by Trafford
Housing

User-led by a person who has autism,

with professional support, to offer
creative sessions and business start
up advice at easily accessible
community centres in Greater
Manchester on a rotating basis.

Connect Up

Balance
Stockport and
Kingston

Creating a hub whereby individuals

with autism will be supported via a 3D
virtual world with the aim of reducing
isolation and promoting emotional
wellbeing.

Postdiagnostic
psycho
educational
courses and
therapeutic
support for
people with
autism

Care & Support

12
Partnership
Community
Interest Company
trading as SEQOL
in Swindon

33.2

Widening post-diagnostic support,

developing supportive tools and
providing clear outcomes to local
commissioners.

Early intervention and crisis prevention

Autism Peer
Advocacy

Autism Plus
Sheffield

25.5

Early
Intervention
addressing
sexually
harmful
behaviour in
young people
and adults
with autism

Circles South East 27

Didcot

Providing training to professionals/

families of individuals with autism in
Hampshire, Berkshire and Oxfordshire
who display sexually harmful
behaviour.

Somerset
Adult Autism
Respite
Service

NAS

Provides an alternative respite service

for adults with autism in Somerset,
based around two yurts.

85

Supporting people with autism through

a programme of peer advocacy to give
them skills to support their peers.

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Progress Report on Think Autism: the updated strategy for adults with autism in England

Project name Organisation and Funding (k) Description

location
The Spectrum Rainbow Autism
Hub
CIC
Worcestershire

40

Social work-led support for crisis

prevention.

Employment
Employment
and Autism
Unlocking
Untapped
Potential

Derbyshire Autism 23
Services Group

A focus on employers adapting their

recruiting process/procedures in order
to make them more autism friendly.

Autism Centre University of

for
Portsmouth
Employment

65

Providing up to 40 adults with the

confidence and employment skills to
access the job market and take part in
a work placement scheme, changing
employer attitudes and designing a
tool to identify individual employment
skills.

Increasing
positive
employment
outcomes for
young people
with autism

Daisy Chain
Project Teesside

48.2

Providing a wide range of employment

opportunities and work experience
and volunteering for up to 30 people
with autism in the charitys superstore.

Employment
opportunities

Caretrade
Charitable Trust
London

53

To help 16 young people with autism

gain paid employment or an
apprenticeship.

Specialisterne
work and
wellbeing
project

Specialisterne
Foundation UK

45

Providing work opportunities,

assessment and work experience to
lead to employment for up to 20
people.

Linkage STAR
employability
project

Linkage
Community Trust
Lincoln

15

Deliver an employability support

service to help 12 adults with autism
into work opportunities.

Autism Innovation Fund Projects (Local Authorities)

Advice and information
Reaching
Communities

South
Gloucestershire
Council

8.3

Extending the reach of an existing

advice and information service by
taking it into the semi-rural community,
including through the use of mobile
libraries.

Autism Innovation Fund projects

Project name Organisation and Funding (k) Description

location
Gaining and growing skills for independence
Slough Autism Slough Borough
Connect
Council

11

Fund the travel training for travel

trainers element of the proposal.

Autism
Nottinghamshire
Training Works County Council

22.1

Creating a social enterprise to enable

people with autism to gain skills
around training and presenting,
creating employment opportunities
and enabling autism awareness
training to reach a wider audience.

Developing
arts skills and
related work
experience
opportunities
for young
people with
autism

Croydon Council

16.5

Building on pilot work to have a more

focused programme for young people
with autism between the years of
1619 and providing programmes
such as work experience.

Spectrum:
personal
development
courses

East Sussex
County Council

12.5

A series of 12 six-week skill-building

programmes that enable young people
with autism to explore, discuss,
prepare for and practice life skills.

Early intervention and crisis prevention

Autism Peer
and Mentor
Support
Network

Lancashire
County Council

30

Development of a peer and mentor

support network within central
Lancashire and to be part of the wider
Connect 4 Life Agenda.

Focus on
Autism York

City of York
Council

25

Establishing an Autism Friends

programme.

Knowsley
Autism
Innovation
Programme

Knowsley
Metropolitan
Borough Council

16

Gaining and growing skills for

independence, along with an intensive
music programme for six people with
the Liverpool Philharmonic Orchestra,
with the opportunity to gain an arts
award qualification.

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Progress Report on Think Autism: the updated strategy for adults with autism in England

Project name Organisation and Funding (k) Description

location
Employment
Employment
Works for
Autism

Surrey County
Council

36.8

Focus on social skills and work

experience for 12 people in a real
workplace along with job coaching and
support.

Autism
Employment
Challenge

Royal Borough of
Windsor and
Maidenhead

37.6

Securing 10 employers as Autism

Employment Champions and 10 young
people with autism securing
apprenticeships.

Building an
London Borough 23.7
interactive
of Richmond upon
online learning Thames
and peer
support
community to
support
access to
employment

To enable people with autism to gain

skills and confidence to access
employment opportunities.

The
improvement
of the local
authoritysupported
employment
service in St
Helens

Providing supported employment to

assist people with autism to secure
work placements through job
coaching.

St Helens Council

Autism Innovation Fund Projects (NHS)

Advice and information
People with
autism
spectrum
conditions in
the criminal
justice and
mental health
systems in
south London

South London and 36

Maudsley NHS
Foundation Trust

Aims to improve recognition of autism

in the criminal justice system, including
developing guidelines.

Autism Innovation Fund projects

Project name Organisation and Funding (k) Description

location
Gaining and growing skills for independence
Pan Dorset
Sensory
Integration
Therapy

Dorset Healthcare 56
University NHS
Foundation Trust

Increase the Trusts ability to recognise

and treat all service users with sensory
processing disorder and autism,
through the development of an
integrated care pathway, sensory
therapy room and increased provision
of sensory integration therapy.

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Appendix C

Abbreviations

ACE

Autism Centre for Employment (University of Portsmouth)

ACPO

Association of Chief Police Officers (replaced by NPCC)

ADASS

Association of Directors of Adult Social Services

ADHD

attention deficit hyperactivity disorder

AET

Autism Education Trust

BAME

Black, Asian and Minority Ethnic

BIS

Department for Business, Innovation and Skills

CCG

clinical commissioning group

CJS

Criminal Justice System

CPS

Crown Prosecution Service

CQC

Care Quality Commission

CRC

Community Rehabilitation Company

DfE

Department for Education

DH

Department of Health

DPTAC

Disabled Persons Transport Advisory Committee

DWP

Department for Work and Pensions

EHC plans

education, health and care plans

EY

early years

FE

further education

HCPC

Health and Care Professions Council

HEE

Health Education England

HING

Hidden Impairment National Group

HSCIC

Health and Social Care Information Centre

IS

independent supporter

JCP

Joint Commissioning Panel for Mental Health

JSNA

Joint Strategic Needs Assessment

LDA

learning difficulty assessment

LGA

Local Government Association

Abbreviations

MoJ

Ministry of Justice

NAS

National Autistic Society

NICE

National Institute for Health and Care Excellence

NOMS

National Offender Management Service

NPCC

National Police Chiefs Council

NPS

National Probation Service

Ofsted

Office for Standards in Education, Childrens Services and Skills

Ofqual

Office of Qualifications and Examinations Regulation

P-16

post-16

PANSI

Projecting Adult Needs and Service Information

PNC

Police National Computer

PHE

Public Health England

RCGP

Royal College of General Practitioners

RCP

Royal College of Psychiatrists

SALT

Short and Long Term support data

SEND

Speciality Educational Needs and Disability

SFC

Skills for Care

SFH

Skills for Health

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Appendix D
Autism information collected or planned
Department/
Agency

Description of current and anticipated data

collection and publications

Health and
Social Care
Information
Centre
(HSCIC)

Numbers of people with autism in the

January 2012
population are studied as part of the adult
psychiatric morbidity survey. A major report on
this topic, based on the 2007 morbidity survey,
was published in 2012.
http://www.hscic.gov.uk/pubs/autism11
The survey was repeated in 2014.
The prevalence of autism in children and
young people is studied in the child psychiatric
morbidity survey, most recently in August
2005.
http://www.hscic.gov.uk/catalogue/PUB06116

Status: Current
publication/
Forthcoming new
publication/Possible
area currently being
explored

Findings are expected in

2016.

A new child survey has been awarded.

Numbers of people receiving psychiatric
inpatient care who have autism have been
studied and reported as part of the learning
disabilities inpatient census in 2013 and 2014.
This survey will be repeated in 2015. It is
anticipated that it will be subsumed into the
Mental Health and Learning Disabilities
minimum dataset.
2014:
http://www.hscic.gov.uk/catalogue/PUB16760
and
http://www.hscic.gov.uk/catalogue/PUB17469

Being collected at
present. First reported
data (2015/16 year)
anticipated mid-2016.

Autism information collected or planned

Department/
Agency

Description of current and anticipated data

collection and publications

2013:
http://www.hscic.gov.uk/catalogue/PUB13149
and
http://www.hscic.gov.uk/catalogue/PUB14046
In addition to data about inpatient psychiatric
care collected from providers, clinical
commissioning groups and NHS England
specialist commissioners report quarterly to the
HSCIC about numbers of psychiatric inpatients
with autism for whom they are financially
responsible. These figures are published
regularly as the Assuring Transformation
dataset.
http://www.hscic.gov.uk/article/6328/Reports
from-Assuring-Transformation-Collection
The HSCIC collects data at individual case level
about clinical events (admissions, outpatient
attendances, accident and emergency
attendances, and mental health care) in Hospital
Episode Statistics and, in relation to mental
health care, in the Mental Health and Learning
Disabilities minimum dataset. Where individuals
are identified by diagnosis records as having
autism, activity relating to them in these areas
can be reported in fully flexible ways.
Where individuals have records in other clinical
settings, these can be linked by their NHS
number and other fields. This allows reporting
about people who have been identified as
having autism in at least one setting. If
successful, the work (described above) with the
Royal College of GPs to improve the
consistency of recording autism in general
practice notes should substantially improve the
potential completeness of this. The Data and
Information Working Group is exploring the
potential value of this approach.

Status: Current
publication/
Forthcoming new
publication/
Possible area
currently being
explored

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Department/
Agency

Description of current and anticipated data

collection and publications

Status: Current
publication/
Forthcoming new
publication/
Possible area
currently being
explored

The HSCIC also collects data from local

authorities about local authority social care
services. To date, statistics collected have not
identified autism as a distinct reason for using
services. A new social care return (introduced in
April 2015) asks about the numbers receiving a
range of long-term support options at the yearend by reported health condition. Categories
include autism, Asperger syndrome and
learning disabilities.
Department for
Education

Special Educational Needs in England (January

2014) School census data showing numbers
of pupils with specific types of SEN, including
autism (Tables 10A and 10B).
https://www.gov.uk/government/statistics/
special-educational-needs in-england
january-2014

Published annually in
January

Children with Special Educational Needs: An

analysis (2014). Prevalence and attainment
data.
https://www.gov.uk/government/statistics/
children-with-special-educational-needs-an
analysis-2014

Published annually in
September

Autism information collected or planned

Department/
Agency

Description of current and anticipated data

collection and publications

Ministry of
Justice (MoJ)

Currently there is no published data on the

numbers of people within the criminal justice
system who are on the autistic spectrum.

Status: Current
publication/
Forthcoming new
publication/
Possible area
currently being
explored

MoJ is working with its partners in a number of

areas to develop understanding of the levels of
health needs of offenders, including those with
autism.
The Governments Liaison and Diversion
Programme, currently being trialled in 12 sites in
England, assesses people coming into contact
with the justice system for a range of health and
care needs, including autism. This assessment
is carried out by staff commissioned by NHS
England.
MoJ is also working with the Department for
Education to develop a new data share. This
should enable better understanding of the
Special Educational Needs status and
educational outcomes of a cohort of offenders,
to help the MoJ to develop programmes to
reduce reoffending.

An evaluation of the
trial sites is due in
late 2015.

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Department/
Agency

Description of current and anticipated data

collection and publications

Status: Current
publication/
Forthcoming new
publication/
Possible area
currently being
explored

Department for
Work and
Pensions (DWP)

The Access to Work programme provides

financial assistance for people who require
equipment, adaptations, support workers or a
communication assistant at interview. Regular
statistics from this programme include details of
breakdowns by type of disability of the person
receiving assistance.

Statistics currently
published as
described. There are
plans for
enhancements to
data to identify
people with autism.

Work Choice is the programme through which

DWP helps disabled people whose needs in
obtaining jobs cannot be met through simple
workplace adjustments. Referral information of
people to the Work Choice programme and
their passage through it to jobs is collected for
the Work Choice official statistics. These record
the nature of clients disabilities and the
geographical area in which they are based.
DWP is adapting the referral process to ensure
that people with autism receive the support they
need as quickly as possible. Geographically the
programme is organised in 28 Contract
Package Areas comprising groups of local
authorities.
DWP is working to enhance both statistical data
sources to identify people with autism as a
distinct category.
Public Health
England

The Learning Disabilities team in Public Health

England collects and publishes data about
services for people with autism in the annual
local authority autism self-assessment.
Publications from the 2013 survey are at:
http://www.ihal.org.uk/projects/autism2013

Published 2014

Reports from the 2014 survey are due to be

published by January 2016.

Published 2016

Progress Report (PR) on Think Autism: Actions going forward

Appendix E
Progress Report (PR) on Think Autism:
Actions going forward
Number Action

Lead

Timescale

Progress and planning

PR1

Public Health Englands Learning Disabilities PHE

Observatory team to undertake an analysis of
Joint Strategic Needs Assessments to
identify the information they include about
adults and children with autism and issue a
report.

By end of
January 2016

PR2

The Autism Programme Board to be jointly

chaired by a person who has autism or is a
carer for a person with autism.

By February
2016

PR3

DH, NHS, LAs,

DH to work with partners so that regional
workshops can be held with local authorities key stakeholders
(LAs), the NHS and other key stakeholders to
support the implementation of the new
statutory guidance, consider progress made
and encourage regular network meetings to
promote best practice and share information.

From
December
2015 to March
2016

PR4

The next Autism self- assessment exercise to PHE

be undertaken by PHE.

From April
2016

PR5

The PHE and DH led data and information

PHE and DH
working group to set out its work programme
for 2016.

By end of
January 2016

PR6

HEE to develop a revised learning disability

skills and competency framework that will
address the needs of adults with autism.

HEE

By March
2016

PR7

HEE to develop and incorporate awareness,

knowledge and skills in recognised areas of
health including autism, mental illness,
physical illness and social support needs
across all programmes for NHS health
professionals.

HEE

By 2018

DH

Training

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Progress Report on Think Autism: the updated strategy for adults with autism in England

Number Action

Lead

Timescale

PR8

DH to approach the HCPC to determine the

level of autism awareness included in its
criteria covering education/training for those
on its register. Further action to be
considered following the outcome of the
discussions.

DH and HCPC

By the end of
February 2016

PR9

DH will look at feedback received from autism DH

awareness sessions to set out further actions
and encourage other government
departments and arms length bodies to
review autism awareness for their staff.

PR10

The DfT bus and coach driver disability

awareness training research to be split into
two phases:

PR11

By the end of
March 2016

DfT

Phase 1 to consist of research seeking

to understand the current level of
disability awareness training on offer and
the impact it has on disabled customers.

By the
summer
2016

Phase 2 to develop good practice

guidance on bus and coach disability
awareness training. The guidance will
provide a detailed specification on the
needs of disabled passengers and the
expected conduct of bus and coach
drivers at all different stages of the
journey. The guidance will also include
recommendations on evaluation schemes
and provide detailed information on the
desired learning outcomes.

By the
summer
2016

DfE to monitor the effective implementation of DfE

the SEND reform programme. In March 2015
DfE published a framework for SEND which
will show how the system is performing, hold
partners to account and support selfimprovement. This includes inspections by
Ofsted and the CQC of local areas
effectiveness in fulfilling their duties in relation
to children and young people with SEND.
Ofsted and the CQC launched a public
consultation on the proposed inspection
framework in October 2015, with first
inspections planned for May 2016.

May 2016

Progress Report (PR) on Think Autism: Actions going forward

Number Action

Lead

Timescale

PR12

DfE to review arrangements for disagreement DfE and MoJ

resolution 201517, including a Tribunal pilot.
The pilot will investigate the case for a single
point of access to the Tribunal on education,
health and social care issues. DfE and MoJ
ministers must report back to Parliament on
the outcome of the review by the end of
March 2017.

End of March
2017

PR13

DfE has funded Autism Education Trust,

Ambitious about Autism and NAS projects in
2015/16 to support children and young
people with autism through training education
staff, exploring good practice in transition to
FE colleges, and support related to exclusion
and alternative provision. Resources from
these projects will be made available by the
end of March 2016.

End of March
2016

DfE, Autism
Education Trust,
Ambitious about
Autism and NAS

Diagnosis
PR14

NHS England, working with the Association

NHS England,
of Directors of Adult Social Services and
ADASS, PHE and
advice from PHE and DH, will use data from DH
the autism self-assessment exercise to work
with a sample of local authority areas to
identify the barriers that are stopping them
having fully established diagnostic pathways,
and share the learning from this exercise with
all local authorities and CCGs.

Initial work
to be
undertaken
by the end
of February
2016

Awareness
PR15

Autism Alliance
Subject to approval, the Autism Alliance UK
to complete Phase 2 of the autism awareness UK
project, including the development of plans to
support the autism third sector to work on
specific issues in partnership.

March 2016

Transforming care for people who have autism

PR16

The Government will keep the impact of

guidance/proposals in response to No Voice
Unheard, No Right Ignored under review to
ensure significant progress is made between
now and March 2020.

HMG

March 2020

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Progress Report on Think Autism: the updated strategy for adults with autism in England

Number Action

Lead

Timescale

DH and
University
College London

By April 2016

Care and support

PR17

DH to take forward with University College

London phase 1 of research into low level
support for people with autism.

PR18

DH and NAS to explore diversity issues

DH and NAS
further and develop actions for going forward
through three workshops.

By March
2016

PR19

NAS to issue the results of the Autism

Passport evaluation and next steps.

By June 2016

PR20

DH and NAS to agree further action in relation DH and NAS

to the earlier NAS work on older people,
involving other government departments and
public bodies as appropriate.

PR21

DH to agree with ADASS, LGA and the

Department for Communities and Local
Government (DCLG) how to best promote
the housing needs of people with autism and
best practice.

NAS

By February
2016

DH, ADASS, LGA By March

and DCLG
2016

Employment for adults with autism

PR22

Develop an Autism Network across all

Jobcentre Plus offices, providing autism and
associated hidden impairment training to
nominated staff who will lead on this agenda.

DWP

By April 2017

PR23

Deliver autism training to all staff involved in

the Personalisation Pathfinder pilots in
Greater Wessex, South West Wales and
Surrey and Sussex.

DWP

By October
2016

PR24

DWP
Develop an autism e learning training
package for staff and managers that will
support a better understanding of autism and
how best to support people with autism into
work.

By December
2016

PR25

Continue to support the work of HING and

together explore ways to encourage
employers to recruit and retain people with
autism and associated hidden impairment
conditions.

DWP

Review at the
end of 2016

Progress Report (PR) on Think Autism: Actions going forward

Number Action
PR26

Lead

Review the autism action plan against the key DWP

priorities in Think Autism, take action on
outstanding issues and provide support to
other government departments.

Timescale
By end of
2016

Contact with the criminal justice system

PR27

Development of a comprehensive package of MoJ and College To be

training by the College of Policing.
of Policing
implemented
by the end of
June 2016

PR28

The NPCC is exploring the opportunities to NPCC

create a new vulnerability marker to be
added to the Police National Computer to
replace the previous mental and ailment
markers, which were created in the 1960s
and were subsequently outdated and
inappropriate. The new marker will be used
to record many different vulnerabilities
including an autism spectrum diagnosis
and will be developed within the upgrade to
the PNC system due by June 2016.

By end of
June 2016

PR29

MoJ has been working with the Home Office MoJ, Home
and the CPS to develop a new Police Service Office and CPS
guide to help officers identify people who
may need support or special measures to
give evidence. The aim is to issue this guide
by the end of January 2016.

By February
2016

PR30

Hampshire
A forum took place in November 2015
communities of
involving the Disability communities of
practice, NPCC
practice and the NPCC lead to discuss
both the progress of the (now widely
available) autism phone app and widget
sheets. It was shared that Hertfordshire
Police have developed their own version of
easy-to-read custody sheets. The projects
will be presented to the NPCC custody lead
with a view to encouraging all police forces
have easy-to-read sheets within their
custody suites by June 2016.

June 2016

PR31

NHS England to issue a revised liaison and

diversion specification to include autism.

By end of
January 2016

NHS England

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2904633 January 2016

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