A Whole Life Strategic Plan for Portsmouth: Implementing Strategy and Guidance for People with an Autistic Spectrum Condition and Their Families ...
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A Whole Life Strategic Plan for Portsmouth:
Implementing Strategy and Guidance for People with an
Autistic Spectrum Condition and Their Families 2012 - 2015
Introduction
The barriers to opportunity for people with an autistic spectrum condition are
becoming much better understood since the introduction of the Autism Act
(2009) and the associated strategy “Fulfilling and Rewarding Lives”. Those
barriers are complex; some are arise from living with the condition, some from
public understanding of how someone may be affected. Other barriers are
created by common practices and approaches that have not been able to
adjust to accommodate the impact of this condition. Just under half of people
with an autistic spectrum condition have a learning disability and many have
mental health needs, it is not always possible to assume what works for one
person will work for the next. Establishing a strategy that will work for
everybody is a challenge and meeting this challenge will need everybody to
pull together. This strategic plan adopts the fundamental approach that no
one service, business, organisation or individual working to meet the
aspirations in “Fulfilling and Rewarding Lives” should have to plan and act
alone.
Many of Portsmouth’s public services have come together to help write this
document with their experience and expertise. It was clear from consultation
with people with autism and their families that only holistic approaches to
tackling barriers that cause inequity have a good chance of succeeding. In
Portsmouth although we have established a local diagnostic team, to identify
people with autism and how their diagnosis of autism will affect them it is not
until this information is linked to services that the full value of the diagnosis is
unlocked The national audit office gave evidence to the government that a
significant amount of money in every community was being spent on people
with an autistic spectrum condition with very poor outcomes. The challenge is
to make much better use of public money we already spend by linking service
development together, and in doing so for people with an autistic spectrum
benefit the whole community.
In the process of writing this strategy it has become clear there are people in
hospital, on probation, in prison, in mental health facilities and residential
services that may not have needed these facilities had they been diagnosed
and supported much earlier on. This strategy hopes to bring everyone
together around the aims and vision to work to overcome the barriers facing
people with an autistic spectrum condition that prevent them having a fulfilling
and rewarding lives. Whilst Portsmouth City Council and the Health Service
have a statutory responsibility to make the improvement in guidance issued in
2010, this strategic plan sets out how by working together we can achieve a
lot more for our community, which, prevalence figures suggests, includes
around two thousand one hundred people with an autistic spectrum condition
and many, many more siblings, mothers, fathers, husbands, wives, friends
and other family.
1Executive Summary
This strategic plan sets out the key objectives to fulfil this vision and aims,
which in turn reflect the aspirations of the government strategy “Fulfilling and
Rewarding Lives”. Some objectives can be achieved with the right
investment, however many require partnerships and services to become
established and better informed about autism
The key network driving this change is the Portsmouth Autism Board, which
achieves change by bringing together skills, knowledge and experience to
inform and persuade decision makers, budget holders and development
forums to address the barriers faced by people with autism. This strategic
plan sets out:
The facts and figures about prevalence of autistic spectrum conditions
in our community
What we know about the needs of people with autism and how that
affects their lives in Portsmouth
A summary of what we have found out from people with autism,
including some of their views on what would help them overcome
inequities they face
Useful knowledge from researchers, professionals and voluntary
groups that work with people with autism
What the people and organisations involved in writing this strategic
plan will do to make improvements
Portsmouth City Council and the NHS in Portsmouth have statutory duties in
relation to autism. These can be summarised as:
o Training staff that provide services to people with autism
o Developing a diagnostic pathway, which leads to assessment of need
for services
o Planning how young people with autism move smoothly from childrens
services into the adult world, with the necessary services
o Making sure a leadership network that delivers these duties exist
The aspirations in “Fulfilling and Rewarding Lives” range much further than
delivery of these statutory duties. Achieving those aspirations is what people
with autism and their families have told us is important in addressing barriers
to equality of opportunity. This Strategic Plan is the first opportunity the
Portsmouth community has had to work together around a shared vision.
2Vision
People with an autistic spectrum condition (ASC) and their families are able to
live fulfilling and rewarding lives.
Aims
To bring together specific plans and objectives, enabling statutory
services, researchers, business, voluntary sector and people with an
autistic spectrum condition and their families to work together to deliver
the vision in Portsmouth.
To ensure the whole community has the support it needs to understand
and act on the issues important to its members with an autistic spectrum
condition.
To improve understanding of the support and services family carers and
people with autistic spectrum conditions may need and work towards
making that support available from wherever it is needed.
1 People with Autism
An Autistic spectrum condition is:
“A lifelong condition that affects how a person communicates with and
relates to other people. ASC affects how a person makes sense of the
world around them…Autism is known as a spectrum condition because
of both the range of difficulties that affects adults with autism, and the
way they present in different people.” 1
There are three main areas of difficulty known as the “triad of
impairments”:
o Social communication (e.g. problems using and understanding
verbal and non-verbal language)
o Social interaction (e.g. problems in recognising and
understanding other people’s feelings and managing their own)
o Social imagination (e.g. problems in understanding and
predicting other people’s intentions and behaviours).2
Many people with ASC have no obvious disability and find they are
misunderstood. Many do not want to be diagnosed or indeed be
recognised as having autism and any support that is required falls to
1 Fulfilling and rewarding lives: the strategy for adults with autism in England, 2010.
Department of Health.
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidanc
e/DH_113369 Accessed 16 September 2011 Fulfilling and rewarding lives: the strategy for
adults with autism
2
Department of Health, 2010. Ibid
3parents, relatives or friends. The person may also fall between services
and not get the right support and this can lead to further problems
(including but not limited to anxiety, depression, mental health issues
etc)3.
A local estimate of the prevalence of ASC in children and adults in
Portsmouth was produced using prevalence estimates derived from the Adult
Psychiatric Morbidity Survey, 2007.4 (Table 1). The Survey found 2.0% of
males and 0.3% of females have ASC. It is estimated that about 2,300 people
in Portsmouth have ASC and that by 2035 this will increase to about 2,500
people (or fewer than 40 additional people every five years).
Table 1
sources
(1) 2010-based subnational population projections by sex and quinary age. Office for National
Statistics. Published March 2012
(2) Estimating the prevalence of autism spectrum conditions in adults: extending the
2007 Adult Psychiatric Morbidity Survey. Department of Health. January 2012
http://www.ic.nhs.uk/statistics-and-data-collections/mental-health/mental-health-
surveys/estimating-the-prevalence-of-autism-spectrum-conditions-in-adults-extending-
the-2007-adult-psychiatric-morbidity-survey Accessed 22 May 2012
4.3 Males have a higher prevalence of ASC. Of the 2,300 people in
Portsmouth with such a condition, about 300 (rising to 340 by 2035) are
predicted to be female.
4.4 The National Autistic Society states that estimates of the proportion of
people with ASC who have a learning disability, (IQ less than 70) vary
considerably, and it is not possible to give an accurate figure. It is likely
that over 50% of those with ASC have an IQ in the average to high range,
and a proportion of these will be very able intellectually. Applying
prevalence estimates to the local population, predicts that about 80
children with ASC aged 0-17 years have an IQ of less than 70, and about
290 children with ASC aged 0-17 years have an IQ of more than 70. The
model predicts that 320 adults with ASC aged 18+ years will have an IQ of
3
Department of Health, 2010. Ibid
4
Brugha T, McManus S, Meltzer H, Smith J, Scott FJ, Purdon S, Harris J, and Bankart
J. Autism spectrum disorders in adults living in households throughout England –
report from the Adult Psychiatric Morbidity Survey, 2007
5
Department of Health, 2010. Ibid
4less than 70, and about 1,130 adults with ASC aged 18+ years will have
an IQ of more than 70.
4.4.1 Information available to statutory services about how many people
have a diagnosis of Autism in Portsmouth City is not yet robust.
Information from the previous two years has given very different figures
for incidence of autism amongst the population.
o Assuming that very few people have more than one of the
above diagnoses, there is a difference of about 1,700 people
who are predicted to have ASC but who have not been recorded
as such. Explanations include:
Some very able people with ASC may never come to the
attention of services as having special needs, because
they have learned strategies to overcome any difficulties
with communication and social interaction, found fulfilling
employment etc
People who would like a diagnosis but who do not know
how to obtain one or who feel that the process is too
complicated
It has also been suggested that some parents may resist
a formal diagnosis if they suspect their child has autism.
Difference in data collection methods which may have
impacted on the actual data collected.
2 Having a Fulfilling and Rewarding Life In Portsmouth
In order to understand how to implement “Fulfilling and Rewarding Lives” in
Portsmouth we needed to establish a much better picture of what was
working and not working for people with autism and their families. On behalf
of Portsmouth City Council and Portsmouth Clinical Commissioning Group
the Integrated Commissioning Unit asked people with an autistic spectrum
5condition and their families what needed to be included in a strategy. Initially
interviews and meetings people with autism, families and with staff working
with people with autism helped to focus on key areas for investigation.
Service providers in the NHS and also charities and social groups shared
their experience. Portsmouth Autism Board asked Dr Beatriz Lopez of
Portsmouth University’s Autism Research Network to compile a report on
issues relating to Employment, Co-morbidities and public spaces and provide
summaries of research in many other areas. The information gained from
visits, meetings and interviews with staff, carers and family members about
the experiences of supporting and diagnosing people, along with research
from Portsmouth University helped shape a questionnaire to obtain more
detailed information.
The questionnaire looked at areas of people’s lives where the City Council
and NHS might offer most help to cope with the impact of autism. The
questionnaire was developed with the help of carers, people with autism and
regional partners to try and make sure issues about living across
administrative boundaries were understood. Together with partners across
the Hampshire the important issues uncovered when speaking to people
locally were examined in more detail. The questionnaire was available on the
City Council website from August 8th until September 9th 2012. This
questionnaire was also discussed and filled in by hand by people with autism.
The responses received were as follows:
People with Autism 23
Professionals working with 42
Autism
Parents of Children with Autism 20
Parents of Adults with Autism 7
The issues recorded in the questionnaire were summarised and entered into
the JNSA briefing note here: http://www.portsmouth.gov.uk/living/19094.html .
This strategy is intended to address the responses we received about opportunities
and support in Portsmouth for people with autism and their families, good and bad, in
the context of implementing “Fulfilling and Rewarding Lives”.
Overall, the picture we gained of living with autism in Portsmouth suggested
everybody would need a personalised approach to getting the help,
information and support they needed. However, there were similar enough
needs across the whole population to suggest an overall pathway of support
might be a helpful framework in making plans for working towards a more
fulfilling and rewarding life for people with autism and their families.
We will:
Publish an Autism Pathway outlining how all the support for people
with autism in the city links together
Identify gaps in the pathway and work towards meeting those gaps
using the best research and guidance available
63 Diagnostic pathway – What “Fulfilling and Rewarding Lives” says
Rewarding and Fulfilling Lives sets out a key aim as: “Developing a
clear, consistent pathway for diagnosis in every area, which is followed
by the offer of a personalised needs assessment”
3.1. Diagnostic pathway – What we heard from people in Portsmouth
Most people felt that the experience of undergoing an autism
diagnostic assessment could be improved by better support and
information, in addition waiting times for assessment were thought too
long.
Waiting times for assessment varied from a few months to many years
in some cases, there appeared to be no pattern in how long people
waited for assessment. Those people who had to wait less than four
months for the diagnostic assessment were most satisfied. People also
said they preferred not to have to travel long distances to undergo the
diagnostic assessment. Those people who had to wait many years for
a diagnostic assessment had in many cases been wrongly diagnosed,
or treatment for other conditions had not taken into account an
undiagnosed autistic spectrum condition. Those same individuals
reported better personal well-being when their autistic spectrum
condition was finally diagnosed.
The diagnosis process itself was seen as a long-winded and
furthermore a lack of information and support throughout the process
disappointed many people. There were particular concerns that some
diagnostic assessments for children outside the city did not take a
holistic view. The approach to holistic assessment and multi-agency
working was seen as inconsistent and confused by those who
commented.
There was no typical reported experience of obtaining a diagnosis,
people did not know what to expect and often felt they were not sure
what might happen once the diagnostic process had been completed.
In some cases post diagnostic support and the potential for further
review to improve the information available about an individual’s
particular diagnosis was reported as a missing part of the diagnostic
procedure. Some people funded a diagnostic review themselves,
unaware of the local pathway for diagnosis. Everyone reported having
a diagnosis has made life much easier as it helped them to understand
their own behaviour and responses, or those of their sons and
daughters.
People who responded to the questionnaire told us they would like the
opportunity to share their experience of the process of undergoing a
diagnostic assessment, or would like to hear about someone else’s
experience. Having a clear diagnostic process with support and
information available throughout the process and help to deal with the
outcome of the diagnosis process was seen as essential by many
people.
This is what people told us they wished to be considered:
7“Practical, structured support and guidance on living with ASD”
“Clearer ways of achieving a diagnosis. Describing what happens at a
diagnosis. How to get a diagnosis, costs etc.”
“ why, when they are finally relieved to know what is ‘wrong’ with
them, were they not given any information on where to go for support”.
The autism diagnostic service for adults is currently being developed
with the local health community services provider Solent NHS Trust.
The diagnostic review process for children is currently provided from
Solent NHS Trust at locations in Portsmouth and Southampton. Work
is underway to develop the diagnostic review services to better meet
the aims of the strategy.
What we will do:
Commission a clear diagnosis pathway for children and adults
Developing Diagnostic Pathway for Adults
8Developing Pathway for Children
Integrated Care Pathway for Autism Spectrum Disorders (ASD)
Portsmouth City
Stage 1: Initial Concerns: Communication and Social Interaction
Gathering Information Stage
Parental concerns or professional concerns (with parental consent) directed to:-
Speech and Language Therapist/Health Early Years Setting/School
Visitor/GP/School Nurse
Developmental Assessment Special Educational Needs Co-
Provides advice/intervention/ refers to ordinator implements SEN Code of
other agencies (Child and Adolescent Practice
Mental Health Services (CAMHS), Refers to Teacher Support Services
Community Paediatrics) and/or Educational Psychologist
Refers to Community Paediatrics, or
Educational Psychologist may refer to
CAMHS
Professional involved advises parents of community, voluntary and independent
support services
Lead professional is identified
Stage 2: Referral for Health Assessment
(to consider and exclude any additional health needs or other diagnoses)
Notify GP if GP is not making the referral themselves
Referral to Community Paediatrics or CAMHs
Stage 3: Comprehensive Assessment
Supported by multi-agency information
Parents and all the professionals involved with child contribute to the assessment
A multi-agency meeting is held to share information. If this is not possible, then the
lead professional is to collate the information.
Stage 4: Outcome of Assessment
Stage 4a: ASD Identified Stage 4b: ASD Not Identified
Diagnosis and Information Pack ASD Excluded ASD Not Excluded
given to parent Alternatives Referral for community
Multi-agency working with ‘Team explored and Paediatrics or CAMHS for
around the Child’ continues appropriate handover/2nd opinion or
A care plan is prepared and support given joint assessment
implemented through the lead No multi-agency
Supported by lead professional professional consensus for ASD
Parents given information about
relevant ASD training, locally
available intervention approaches Case discussion with
and Support agencies multi-agency assessment
(community, voluntary and team
independent)
Multi-Agency Working Continues with Team Around the Child Facilitated by Lead
Professional
Stage 5: Transition
93.2. Getting on the pathway – What we heard from people in
Portsmouth
Getting access to a diagnostic assessment for an autistic spectrum
condition was identified and something that was difficult in very many,
but not all, people’s experience. For parents for young children getting
a diagnosis early was seen as particularly. This enabled the most
appropriate services to be put in place from an early age tackling the
negative impacts of an autistic spectrum condition more quickly;
however it was acknowledged that autism may not be suspected for
some time, in younger children. Along with Health Visitors and
professionals associated with schools, GP’s act as “gatekeeper’s” and
the range of experience and knowledge these professionals have
about autism has led to people experiencing different access to a
diagnostic review. Where people described themselves as having a
supportive GP they described themselves as lucky and their
experience as positive.
“We were very lucky because we have a very supportive GP who sent
us to a centre in Kent because there is nothing in the Hampshire area”.
“I will never forget the feeling of desperation, of loneliness, of complete
helplessness. I had no one to turn to”.
There is a lot of evidence to suggest that intervention at the earliest
possible point significantly improves outcomes for children with an
Autistic Spectrum Condition. For many people a delay in receiving a
diagnosis is at best unhelpful and at the worst can lead to the provision
of expensive services that are not only inappropriate and ineffective,
especially in later life. The personal stories of some people
commenting on this plan suggested this might also mean more
expensive and intensive services are needed later on. Helping GP’s
and others to refer as early as possible will mean improving the
understanding of autism, making the pathway much clearer and
improving access to quick effective screening. Other professionals
acting as gatekeepers to assessment in early years could also be
supported with better screening tools. This may make it possible for
effective referral for a diagnostic assessment to come appropriately
from a number of sources, including individuals who suspect they may
have an autistic spectrum condition themselves.
4 Access to Health
What Rewarding and Fulfilling Lives Says:
“The end goal is that all NHS practitioners will be able to identify potential
signs of autism, so they can refer for clinical diagnosis if necessary .., but
more importantly so they can understand how to adapt their behaviour, and
particularly their communication, when a patient either has been diagnosed
with autism or displays these signs. This in turn will mean that adults with
10autism feel more comfortable seeking healthcare – not only reducing the
likelihood of challenging behaviour in healthcare settings, but more
significantly meaning their health needs will be identified and addressed
earlier.”
The role of GP’s and Primary Care in relation to suspected autism is defined
in the section on the diagnosis pathway.
4.1. Acute and Hospital Care
The Picture in Portsmouth
The review undertaken by Portsmouth University’s Department of Psychology
supported cited evidence of how adjustments to lighting, furniture,
background noise and odours might all reduce stress and facilitate better
outcomes for people with autism. Local feedback from people with an autistic
spectrum condition to hospital staff related to the physical care environment.
This led to a decision to explore how Portsmouth Hospital Trust could develop
simple, practical guidance for staff. A visit by a group of young people with
autism from the “Pirates Are Cooler Than Ninjas “ group provided an
opportunity for the review of the Medical Assessment Unit, Day Surgery Unit
and a medical ward which commonly cares for people with learning disability
and/or ASD.
This has resulted in:
o An outline for a specification for a “sensory friendly” room which
avoids overstimulation
o A plan for the repainting of a lift lobby to more muted tones
o The development of improved information for people attending day
surgery related to the steps in the process including the use of
lockers for personal belongings.
The Hampshire Autistic Society has developed an Alert Card to help
emergency services understand how to communicate better in difficult
situations. This initiative is a very welcome example of schemes that can help
people with autism if they need emergency care.
What we will do:
Support Portsmouth Hospital Trust to establish a rolling
programme of environmental review is undertaken across the
Trust.
4.2. Health Care in the Community
The Picture in Portsmouth
Around three quarters of people with an autistic spectrum condition and many
parents who responded to our survey told us they had used mental health
services or experienced anxiety and depression. Difficulties with social
11situations and social isolation were highlighted as a concern by many people
with an autistic spectrum condition, their families and by professional staff.
People also told us it was hard to get the right support with a mental health
need and an autistic spectrum condition as there was no specific support
available for an autistic spectrum condition. The review report produced by
the department of psychology identified very high instances of co-morbidities
associated with autism affecting people’s mental health.
This table is taken from the Portsmouth University Autism Research Network
Report “Employment schemes, design of public spaces and co-morbidity in
adults with ASC” 2012 by Dr Beatriz López, Emma Mason, Ceri Russell &
Ania Ryszkowska
Children Adults
High-functioning Low- High- Low-
functioning Functioning functioning
Anxiety 55.3 % ( 42% 25% 12%
disorders De Bruin et (Sim OCD (Mosel
al., 2007) onoff (Russell ey et
et al., al.,
43% et
2005) 2011)
(Sukhodols al.,
2008 50% 42%
ky et al., ) (Lugneg (Bradle
2008) ård, et y et al.,
84% (Muris al., 2004)
et al., 1998) 2011)
Mood 17% 37% 43%
disorders (Depression (Ghaziu Depre
) ddin et ssion
al., (Sterlin
(Kim et al.,
1998) g&
2000)
Dawso
36.4%
n,
(Munus
2008)
ue et
al.,2009 67%
) Mania
(Bradle
50% y et al.,
Depres
2004)
sion
(Lugneg 50%
ård,et Depre
al, ssion
2011) (Bradle
y et al.,
53% 2004)
(Ghaziu
ddin, et
al,
1998)
12Some people accessed the “Talking change” service and the Community
Mental Health Team, half of those people said the service had helped them.
Many people told us they felt they had struggled alone for many years with no
help and support from any community services. Parents and carers shared
this experience: they told us the opportunities to take a break from caring
available to them were insufficient, especially where the person they cared for
received no formal services. Many Carers had experienced relationship
break up and said they felt “vulnerable”, or “anxious and depressed”.
People with a learning disability and autism do receive support from the
learning disability community health team. This includes clinical assessment
and intervention aimed at addressing communication, emotional,
psychological, occupational and sensory needs if appropriate. Increasingly,
people who use services and their families’ expectations of a modern service
are that people’s needs are treated holistically and with a person centred
approach; this is reflected in Department of Health guidance such as No
Health without Mental Health (2011), Valuing People Now (2009) and
Intermediate care – Halfway home: Updated guidance for the NHS and local
authorities. (2009)
The development of a team led by mental health practitioners to offer a
diagnostic assessment for autism will improve the opportunity to offer holistic
person centred plans for improving mental health and well-being. Services for
people with an autistic spectrum condition and a learning disability are
effective, but their reach is limited. For people with a common mental health
condition the “Talking Change” service can be effective. However for people
who do not have a learning disability there is currently no means of delivering
co-ordinated support outlined in person centred plans accompanying a
diagnosis. Also for people whose mental health need is deeply entwined with
the Autistic Spectrum condition there is currently no specific psychological
service.
“His experiences throughout his life has led to mental health
problems…he still suffers from depression and anxiety”.
”Mental Health Nurse was very helpful”
“Support (even if low level and relaxed)”
What we will do
Develop a network in health and social care service services to
work to bring about the aspirations described in "Fulfilling and
Rewarding Lives".
135 Education and Awareness
What “Rewarding and Fulfilling” Lives says
“…real success will depend ultimately not only on transforming services, but
on changing attitudes across our society. We need to build public and
professional awareness and reduce the isolation and exclusion that people
with autism too often face”.
5.1. Awareness
The Picture in Portsmouth
The need to improve understanding of autistic spectrum conditions in the
community was highlighted by a considerable proportion of those who
responded to consultation. The need for a public education campaign was
discussed in terms of the benefits from the perspective of family,
professionals and people with an autistic spectrum, by people who responded
to consultation. Impairments related to autism make social interaction very
difficult and parents told us this tends to be seen as ‘bad behaviour’ in
younger children or ‘playing up’. For young adults who responded to the
consultation they told us many of their anxieties and worries emerged from
interaction with people who had no idea they had an autistic spectrum
condition, or who had no idea about how having an autistic spectrum
condition might impact on behaviour. For many parents there are positive
impacts on their own personal development and they were keen to share the
positive impact an autistic spectrum condition might have.
Many people felt their employers could benefit from knowing a lot more about
how autism might impact in the work place and how to make reasonable
adjustments with this in mind. The view of people who are diagnosed in later
life is that their employment is at risk because of their autistic spectrum
condition. In fact, difficulties at home or work are often the prompt for a
diagnostic review. Many professionals who worked with people with an
autistic spectrum condition also felt the community and employers could be a
lot more supportive with clearer ideas of how autism might impact on the
person they support.
“I am extremely proud of my son and would not be doing the job I have today
without him”.
“Parents should be more educated about what their children, young people
are capable of because I feel a lot of them hold back because they say they
can’t travel alone”
“Educate employers about the benefits of employing someone with autism”;
14What we will do:
Support a campaign and awareness programme with our
partners to improve opportunities for people with autism in the
City
5.2. Lifelong Learning
The Picture in Portsmouth
There is a range of training and support available to parents, children and
young people with autism in Portsmouth. Some of this support is delivered
directly through schools with particular expertise in Mary Rose School,
Cliffdale School Milton Park Federated Primary School, Harbour School and
Redwood Park School, which have formed the SEN partnership. Parents
have also told us they have received support from Portage and the Willows
Nursery. In pre-school the PELICAN team helps children with autism at home
and during the transition to school; this service has slowly extended its reach
and is looking at how to augment its service. A variety of services aimed at
children and young people reach into schools, these include speech and
language therapy and services targeted at improving social and
communication skills associated with autism. There is also training and
support for schools to improve their skills and awareness, such as the autism
award currently offered by the Educational Psychology department.
People with autism who responded to our survey had a great deal to say
about their experience of education. In their responses were a wide range of
ideas about how their experience might be improved. One respondent
suggests most people describe a lack of understanding and awareness about
autistic spectrum conditions. Almost all respondents with an autistic spectrum
condition describe feeling anger and frustration because of their interaction
with the education system and many report bullying. About half of these
people did not receive their diagnosis until after they left school; however their
experiences were not different from those who did receive a diagnosis.
Respondents are very clear about asking for help, with many people able to
express exactly what would help. With the wide range of services that already
exist, ways to develop the support on offer to take account of those views is
underway.
Many of the staff that responded identified a lack of secondary school
provision for people with autism and complex needs. There was also a great
deal of concern that capacity in Portsmouth for children with complex needs
was under pressure. Support for teachers in mainstream education along with
resources to support children and young people with autism was highlighted
as another area where early progress could be built upon. In colleges and
mainstream settings the challenges of managing behaviour caused a lot of
anxiety. Many staff commented that responding to the needs presented by
children and young people holistically was important. Having a diagnosis of
autism could help equitably focus support, but a person centred approach and
15joined up planning should help match the right resources and skills needed to
improve outcomes for any child or young person. For a few children and
young people this will mean formal plans, but many others could benefit from
better co-ordination of the support already available to them.
“Somebody should be employed by the school who understands someone
with autism”
”I was bullied heavily at school for being different by pupils and teachers
alike”
“Someone you can talk to and speak up fro you, help you solve problems with
people.”
What we will do
Work to augment the support for children and young people with
autism for fulfilling their potential in education.
5.3. Transition
What “Rewarding and Fulfilling Lives” says:
Through school, children with autism and their families will usually have
access to support that helps them achieve and be included. It also provides a
focal point of activity in the day. Therefore one way of improving access to
services for adults with autism is by focusing on managing the transition to
adulthood so that young people have access to the services they need from
the start of their adult life.
5.3.1. Transition to Adulthood
The Picture in Portsmouth
There were positive and negative comments about accessing and using the
current range of support for young people with an autistic spectrum condition.
Some young people with autism are receiving education in settings outside of
the City and may need to grow their circle of friends and family A small
number of young people with autism will also have need complex support
needs and require formal plans, however many people believed they would
benefit from better help and support during the transition to adulthood. The
opportunity to build on good practice and effective support in education, whilst
maintaining an equitable service for people with autism was recognised by a
number of people in discussions about developing this strategy.
People with autism, their families and professionals told us a lot about their
experiences of young people moving into the adult world. Most shared the
view that transitions between school, college and work were very difficult for
most people because of their autistic spectrum condition. A significant
number of respondents to our survey felt a specialist team to work with young
16people in transition from age 13 would be helpful. In addition Portsmouth
University’s Autism research Network Issue 4 on Employment indicated early
support is likely help individuals make better progress towards achieving a
fulfilling and rewarding life. A whole range of services, employers and the
community have an important role to play in improving the access to
opportunity for young people with autism, and better co-ordination might
improve the impact of those services.
“Include individuals with autism!”
“The offer is inconsistent and not joined up enough”
“I feel strongly that child and adult pathway needs to be joined”
“Obtaining consistent support for youngsters aged 14-18 is difficult”
What we will do
Develop transition protocols between schools and services that are
based on person centred approaches
5.3.2. Transitions as an Adult
"Fulfilling and Rewarding Lives" does not mention other transitions
specifically, but local knowledge and expertise has identified other transitions
as needing careful attention also.
The Picture in Portsmouth
People with autism will also experience transitions, like most others, relating
to their employment and housing, and in particular, retirement. However for
people with an autistic spectrum condition the change to unfamiliar routines
and social interactions can be significantly stressful. Retirement is known to
bring about a significant change in the institutions and structures that
surround people and provide the framework within which they participate in
the community. The Health service consistently receives requests for
diagnostic assessments for people in later life who are finding it difficult to
cope whilst experiencing transitions.
Portsmouth City Council’s Adult Social Care workforce will regularly deal with
issues for people growing older and accompanying challenges to
independence. This expertise may well be difficult to deliver without the right
level of awareness of autism in the workforce. The workforce development
objectives detailed later in this document will help to ensure access to
services and support is not compromised simply because an individual has an
autistic spectrum condition.
What we will do
17 Support and Encourage the use of Person Centred Planning
techniques for people with autism
6 The Built Environment
What “Rewarding and Fulfilling Lives” says:
“Local authorities are already required under the DDA to take account of the
needs of disabled adults when considering housing provision. This includes
taking account of the needs of adults with autism and means that in allocating
homes to adults with autism, housing services should take account of
individuals’ needs, as identified through the needs assessment process, as
they should for any other vulnerable adult.”
6.1. Homes designed for people with autism
The Picture in Portsmouth:
The environment in which an adult with autism lives makes a significant
difference to the quality of their daily living experiences. Good building design
can make a significant impact on sensation, reducing the impact of people
with extreme sensitivity to sound or colour, alternatively stimulating those who
sensations are underdeveloped. For some people with autism good building
design can make the difference between living independently or in residential
service. When we asked people with autism whether sensory issues affected
them around half of those who replied said bright lights and loud noises
affected them badly. Of those people with autism who answered our survey
over 80% said crowds of people were an issue, making clear the importance
of home as a refuge which enables people to cope with everyday life.
“My house… gives me space to get away form everyone who isn't my family
in the evenings and weekend”.
6.2. Finding and maintaining an independent home
For many people with autism, despite their vulnerability and susceptibility to
sensory issues, they are unlikely to have social care needs significant enough
to become a priority for support with housing. Nevertheless people with
autism do need housing and can live very independently with the right
attention to environment and support. With the right sort of support and
reasonable adjustments to enable access to support the whole community
uses adults with autism will have increased opportunity to reduce their longer
term dependence on health and social care services and experience a
rewarding and fulfilling life in the Portsmouth Community.
For other people with autism they may have a learning disability, or their
autism increases their vulnerability to an extent where social care support is
necessary. Currently Supporting People and residential services support
many individuals with autism to remain independent in these settings. There
18should be continuous improvement in these services to better understand and
meet the needs of people with autism living in these settings.
What we will do:
Support housing teams to train staff appropriately to help them
work more effectively with people with autism and highlight gaps in
services to the housing department
7 Work
What “Rewarding and Fulfilling Lives” says:
The ability to get, and keep, a job and then to progress in work is the best
route out of poverty, and a central part of social inclusion. We know that
adults with autism are significantly underrepresented in the labour market and
we are committed to doing more to help adults with autism into work.
7.1. Getting ready for work
The Picture in Portsmouth
Many people with an autistic spectrum condition can work, however many do
not have the opportunity. Only 1 person who replied to our survey worked full
time hours, most people only worked between 0 and 7 hours, about a third of
people worked in a voluntary capacity; 1 person had never worked at all.
National research undertaken by M. Knapp, R. Romeo and J. Beecham in
2009 estimates the hours of work lost or disrupted for people with autism and
their families amounts annually to £19,785 for people with high functioning
autism and £22,383 for people with learning disabilities. They also estimate
the cost to the economy as a whole is £25 Billion, 59% of which is the cost of
public funded services.
The Jobcentre Plus works with people who are aged 18+ who are receiving
either Employment Support Allowance (ESA) or Jobseeker's Allowance (JSA)
because they have been assessed as either able to participate in work related
activities to assist them into the labour market - or fully able to work despite
having a health condition or disability. This should include many people with
an autistic spectrum condition and the team of health advisers already work
with a number who have Autism.
Consultation suggested taking a more joined up approach and developing
better awareness with health & social care professionals about who the
Jobcentre Plus service could be very effective. This could also help with
easing the transition to adult services when young people have to start
attending Jobcentres, after leaving education. In addition older customers
who may or may not be diagnosed could benefit from greater awareness of
autism within the service, which would also help improve how the service
works with people - e.g. using quiet rooms for meetings etc.
19When we consulted we heard only a few stories about the other sources
support people had to find work and achieve in the workplace. Many
employers are unaware of the Access to Work scheme which enables
individuals to ask for money to improve their support in the workplace. Some
support in employment came from Mencap, who visited to support a work
placement regularly, however the service ended after 3 months. Support for
people with autism to enter and maintain employment will help start to
address an estimated spend, on public services in Portsmouth, of around
£27,000,000, based on recent prevalence figures.
For people with autism in work, there is a great deal of support, including
financial support, available to employers. However respondents to
consultations express some frustration with employers around making
adjustments.
“I am allowed to work from home one day a month which is the same as
everybody else”.
“Autistic people have a wealth of qualities beneficial to the workplace but
many employers are ignorant and afraid to face the disability”
The most requested adjustment was a quiet environment.
Work of some nature is a key plank of community life and as required by
“Fulfilling and rewarding Lives” we will focus our energy on improving
community life here.
What We Will Do:
Encourage people with autism to develop aims, goals and skills around
how they would like to engage in community life and help improve
access to services to implement their plans
Identify gaps in the pathway for support with employment that stop
people getting a fair chance and develop plans to address them
8 Supporting Carers and Families
What "Fulfilling and Rewarding Lives" says:
“It is essential that the views of adults with autism and their carers are sought
and taken into account in the development and delivery of services locally, in
line with the duty to involve set out in Creating Strong, Safe and Prosperous
Communities.”
“It is best practice that diagnosis of autism is recognised as a catalyst for a
carer’s assessment.”
8.1. Caring for younger people with an autistic spectrum condition
20The Picture in Portsmouth
Family Carers of children with disabilities remain carers for most of their lives,
even when other services step in as their sons and daughters become adults.
Portsmouth City Council and the health service in Portsmouth have
developed a Carers Strategy to better meet the needs of all Carers in
Portsmouth, including those who have sons and daughters with an autistic
spectrum condition. This can be found at the web address below:
(http://www.portsmouth.gov.uk/media/Portsmouth_Carers_strategy_2011-
2015.pdf).
There were a number of issues specifically relating to caring for people with
autism that we learned about from consultation work:
Parents feel strongly that they would welcome more support following a
diagnosis for their child. For some parents the groups already offered in the
south west of the City were too difficult to access. Carers who faced this
difficulty had set up a “micro” group of between 2 to 4 carers who met locally
and helped them support each other. Parents also commented positively on
training experiences, although there was a call for training for parents to be
free of charge most training can already be accessed free of charge.
Some Parents believe people with autism have their own world view, different
from other people’s, but express this world through social stories which
highlight the stress and anxiety they face. This stress and anxiety is largely
related to social contact. In one parents opinion her son “has no
understanding of the impact he has on others around him” and in another’s
her son “Is unable to make friends”. A reluctance to initiate social contact is a
recurring theme, along with a view from parents that their sons and daughters
are happiest living in their own “bubble”. Families relayed stories of their son
or daughter autistic spectrum condition dominating the whole family’s life,
which gives insight to the extra pressures faced by families caring for a son or
daughter with an autistic spectrum condition.
“He has recorded his stories of these families, and the autistic young person
is always getting into trouble”
“We learned to live with his lists, timetables, holidays planned up to a year in
advance”.
A highly significant number of respondents commented on the impact of
having a child with autism on family life, including concerns about going out
as a family, doing typical family activities, accessing public events, eating as a
family etc. Some parents commented on how the difficulties of having a child
with autism have impacted on their own mental health and emotional well-
being and that of the child’s siblings.
A number of participants highlighted the positive contribution made by support
groups in the city, particularly Portsmouth Autism Support Network (PASN)
and “Pirates Are Cooler than Ninjas”, a support group for people with autism.
21The need to continue to have support groups for families, including some
requests for more family support, with a buddying system was requested by
many participants. Concerns were also raised about a perceived lack of short
break opportunities for families in the city, as well as organised social
opportunities for young people/ children with autism.
PASN has “allowed us to go out as a family without anxiety”
Pirates “allows me to go to a place where I feel normal”
“College has been difficult not the work but the other students being difficult”
8.2. Carers for Older people with an autistic spectrum condition
The Picture in Portsmouth
For many people with an autistic spectrum condition they do not receive their
diagnosis until they become an adult. For some people there is evidence they
are misdiagnosed and it is only when they receive a diagnosis of autism in
later life that their support really begins to work for them. For many older
people with an autistic spectrum condition their carers will have had little help
and support throughout their life and have substantial concerns for their sons
and daughters futures when they have passed on.
In most cases people who enter the diagnostic process later in life because
they encounter difficulties at work, or in their family life. Where people have
received a diagnosis this has given them and their families vital clues about
how to overcome these difficulties. People who we consulted cited the
support of friends being key, at this time, to them remaining in employment, or
in a relationship. These people expected they might need this sort of low level
support only irregularly and at points of great stress to help them to overcome
difficulties, as they present. Our consultation suggested many people may be
able to overcome the challenges living with autism presents without direct
support from the statutory sector, if they have a source of expertise and a
strong peer network.
“His autism has limited his life choices, and has created anxieties and
obsessions which prevent him doing activities which he clearly enjoys once
he can get to them.”
“Autism is lifelong. It does not get better but it morphs with maturity.”
“I have felt very alone in dealing with the difficulties autism brings, and have
had many fears about his future.”
What we will do:
Ensure the Carers Centre are aware of sources of support that will
enable carers and siblings of people with autism to keep caring
229 Citizenship and Community
What Rewarding and Fulfilling Lives says
“For adults with autism, many of the most effective advocacy and buddy
schemes are delivered through the third sector and volunteer groups, who
have a real insight into the challenges faced by adults with autism. However,
funding is often a significant issue for such groups which makes it hard for
them to increase their capacity. Given how valuable these services can be for
individuals, we believe that more should be done to support volunteer and
third sector groups to deliver these kinds of services.”
9.1. Advocacy
In this context advocacy is taken to relate to these areas:
Understanding appropriate behaviour
Learning to interact
getting help with relationship difficulties
family, friendship and support networks
Getting help with individual problems
The Picture in Portsmouth
Many respondents expressed frustration about their interactions with other
people and most had difficult socialising. The ability to withdraw to a quiet
environment or be away from social situation was talked about frequently.
Almost all respondents valued increased awareness amongst other people,
but also found it difficult to increase their own understanding of what autism
was and how it might affect them.
Day to day life is described as “anxiety provoking” by people who responded
reported. They also said they lacked confidence and parents reported their
sons and daughters were reluctant to initiate anything themselves. Almost all
people report that their experiences at school are where these feelings are
established. Around half the people who responded to the survey reported
difficulties in dealing with other people and socialising, this was an
overwhelming concern. In many respondents views voluntary sector
organisations are particularly helpful in helping people to cope with day to day
life. Just under half of the respondents say they have developed coping
mechanisms, although this has not been easy. Many people’s special
interests like music or anime helps them to cope with stress, but for some,
simply getting away from everyone at the weekends and evenings is what it
takes.
23“More info about support groups would have been helpful”.
“Someone you can talk to and speak up for you, help you solve problems with
people”
“He doesn’t get in touch himself because he says he ‘doesn’t like to instigate
things’”
What we will do:
Ensure people with autism and their family carers are involved in the
design of service response to people with autism from the community
health and social care services
Develop the opportunity for peer support networks to become
established
10 Developing the workforce
What “Rewarding and Fulfilling Lives” says:
“When adults with autism use public services, all too often the onus is on
them (or their carers) to explain to staff what having autism means. In some
cases, this can affect their eligibility for financial support; in others, it can
make a major difference to the advice they receive. When it comes to the
criminal justice services, it can change the way that police officers or courts
view a situation.
To tackle this and increase understanding of autism among frontline staff, we
Recommend that autism awareness training should be included within
general equality and diversity training programmes across all public
services.”
The Picture in Portsmouth
We heard about a lot of helpful training from people who responded to our
survey. It was recognised there was a considerable amount of helpful
specialist training related to autism including PAATHS, IDB, TEACCH,
PELICAN, PECs, graduate and post graduate education and training to use
social stories and for sensory integration. Multidisciplinary training was
highlighted as a useful approach, especially for front line staff and especially
around awareness level. Unfortunately there is no centrally held record of
who has accessed training and which training they have accessed. The
priority for training was front line staff, in the view of people who responding to
our survey.
The importance of parents and people with an autistic spectrum condition as
part of a training process, or to improve the effectiveness of staff was made
clear by many people who responded to our survey. Concerns were also
24raised about accessibility of training for parents, with several people
suggesting that training needed to be free of charge to parents.
The two most quoted sources of useful training were from the educational
psychology service and the training provided by the “Pirates Are Cooler than
Ninjas” group. In addition many respondents believed they had expertise
within their own teams, which was transferred amongst their teams during day
to day operational activity. Some people believed the quality of understanding
amongst school staff impacts, or have impacted on children’s experience of
school and their educational outcomes. A substantial number people
recommended more training for mainstream teachers.
A very high number of people commented on a need for more training for
front-line staff, e.g. school staff, police, social workers, housing officers, GPs
etc
“Training in which parents and professionals work together are also very
effective”
“We would like talks from people with autism about their experience”
“Training from the EP on autism was useful”
What we will do
Grow expertise in Autism in the city and ensure training
programmes that include people with autism are available free
of charge to families affected by autism
Encourage Health and Social Care organisations adopt a
training framework for autism based on Board recommendations
11 Accessing Services
What “rewarding and Fulfilling Lives” says:
Since December 2006, under the disability equality duty, all public sector
organisations are required to make reasonable adjustments to services to
ensure they are accessible for disabled people. This duty includes making
adjustments for people with autism. Too often, this aspect of the duty has
been overlooked, with the focus mostly on physical and sensory impairments.
11.1. What can be done help access services
Sharing the good and bad experiences of people trying to access services is
fundamental to improving to improving access. The Portsmouth Autism Board
will play a useful role in feeding back experience to appropriate places and
will be a central point for collecting people’s experiences.
11.2. What you should expect from mainstream services
What “rewarding and Fulfilling Lives” says:
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