Helens Dissertation - Copy1

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Transition, Standing on the Cliff Edge:
A study of the role support plays in determining a successful outcome,
during transition to adult services, for young men (aged 16-25yrs) with
High functioning autism orAsperger Syndrome.
Treatpeopleasiftheywerewhattheyoughttobeandyouhelpthemtobecome what they
are capable of being. ~ Goethe
Helen Abbott BA Hons Heath & Social Care

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CONTENTS
PERMISSION.......................................................................................................................................................4
ACKNOWLEDGEMENTS..............................................................................................................................5
ABSTRACT ...........................................................................................................................................................6
INTRODUCTION ...............................................................................................................................................7
LITERATURE REVIEW..................................................................................................................................9
1.1 TRANSITION.....................................................................................................................................9
1.2 ASPERGERS SYNDROME........................................................................................................11
1.3 POLICIES AND FRAMEWORK.............................................................................................12
1.4 OUTCOMES.....................................................................................................................................14
METHODOLOGY ............................................................................................................................................16
INTRODUCTION...................................................................................................................................16
2.1 PRIMARY RESEARCH...............................................................................................................17
2.3 SECONDARY RESEARCH........................................................................................................18
2.3 QUESTIONNAIRE - (PRIMARY RESEARCH A)...........................................................19
2.4 FOCUS GROUP - ( PRIMARY RESEARCH B)................................................................20
2.5 ETHICAL CONSIDERATIONS ..............................................................................................21
2.6 IMPACT.............................................................................................................................................21
FINDINGS...........................................................................................................................................................22
3.1 INTRODUCTION. .........................................................................................................................22
3.2 RESULTS OF THE STUDY GROUP/QUESTIONNAIRES ........................................23
3.3 ANALYSIS AND FINDINGS.....................................................................................................24
3.4 DISCUSSION...................................................................................................................................34
3.5 CONCLUSION.................................................................................................................................35
3.6 RECOMMENDATIONS..............................................................................................................37
BIBLIOGRAPHY....................................................................................................................................39
BOOKS…....................................................................................................................................................44
GLOSSARY OF TERMS......................................................................................................................46
APPENDICES....................................................................................................................................................47
5.1 APPENDIX 1 – EVALUATION OF THE LEVELS OF PROVISION QUESTIONNAIRE 47

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5.2 ETHICS FORM...............................................................................................................................50
5.3 DATA COLLATION......................................................................................................................52
5.4 CORRESPONDENCE. .................................................................................... 53

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PERMISSION
Permission to Copy: Helen Abbott
The author of this work hereby grants permission to copy for educational purposes, subject to the
normal conditions of acknowledgement.
Signed: Date:

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ACKNOWLEDGEMENTS
The author of this report would like to thank all those people who, during the course of my final
year, have offered their continued support, encouragement and guidance. I would like to thank my
course tutors, and my dissertation tutor. Without their support this project would not have been
possible.
I would also like to acknowledge all those who participated in the study and kindly gave up their
time to assist me with my research.
Some people inspire you, others encourage. I would like to pay special thanks to my friend and
mentor Karen Cash. She has been unstinting in her support and encouragement and I will miss
our Monday sessions discussing the many varying aspects of autism and autism strategies. She
has inspired me to look so much further than I had at first dared to look and given me the confi-
dence to pursue new horizons.
I would like also to thank my husband and children for their tremendous support and understand-
ing, and for often taking over my role at home to give me the time and space to work. But I would
like to especially thank my eldest son Frazer, who has Asperger Syndrome. He has been the in-
spiration for this work. His enduring determination to succeed and realise his ambitions regardless
of the difficulties he encounters, has been humbling.

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ABSTRACT
A Youth Cohort Study showed that, despite the statutory support and transition planning available
to them, by the age of 19 a quarter of young people who were identified as having SEN and
disabilities at school were not in education, employment or training (NEET). Their failure to
achieve satisfactory outcomes emphasised the need for appropriate support, during the years of
compulsory schooling, which helps them face the challenges of the transition to adult life (DfES
2003).
This study proposes to explore the complex issues surrounding the role that support plays in
determining a successful transition to adult services for young adult males (16-25) with a diagnosis
of Asperger’s Syndrome and Autistic Spectrum disorder and examine the reasons why many
individuals fail to gain access to appropriate provision despite government investment into the
transition programme.

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INTRODUCTION
"I see people with Asperger’s syndrome as a bright thread in the rich tapestry of life" –
Tony Attwood.
The period of transition from school to adulthood is embraced by most young adolescents with ex-
citement and an eagerness to explore the next phase of their lives. Whilst some individuals with
autistic spectrum disorders are able to make this transition successfully, for many adolescents with
Asperger’s syndrome (AS) or autistic spectrum disorders (ASD) this can be a particularly difficult
and challenging time.
Analysis of recent research literature has shown that poor adult outcome in autism is related to a
failure to understand the individuals needs and the challenges of daily living (Howlin, 2004; Eaves
& Ho 2006;) and that a well-planned transition, sensitive to underlying needs, improves health, ed-
ucational and social outcomes for these individuals (NAS 2007).
Acknowledging the scale of the problem, in 2007, the Treasury announced an investment of nine-
teen million pounds into the transition support programme for young disabled people after a
committee of MP’s concluded that post- 16 provisions were failing to meet the needs of young
people with disabilities and special educational needs (HCESC 2006).
Yet despite government investment, studies have shown that there is still a failure to provide ade-
quate access to adult support services, leaving many to fall between the gaps created by service
boundaries as they are often not considered eligible for support (NAS 2009).
Although their transitions may be characterised by risk and uncertainty, in general, little is still
known about the relationship between variable influential factors, such as educational attainment
and family characteristics and the influence they have on the outcome of an individual with AS
(Rydzewska 2012). However, evidence supports the hypothesis that the outcome of an individual
is directly related to the access of age appropriate support during this critical stage of develop-
ment. Both the quality care commission (QCC) and the Department for Health (DH) concur in their
findings that services are often organised in a way that prevents people with autism from being
able to access the support they need.

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Influenced by their personal experiences in supporting a young adult male with Asperger’s Syn-
drome (AS) through this problematic process, the researcher has chosen to investigate the
process of transition. Leading them to ask, what are the influencing factors and the role they play
in determining the outcome of a successful transition to adult services? Focusing specifically on
the challenges faced by young males (aged 16-25) with AS or autistic spectrum disorder (ASD).
An examination of the literature available has highlighted the shortfall of research into the role of
transition and the need for further on-going studies. An issue that both professor Howlin and
Dr.Luke Beardon have concluded in some of their recent research findings (Howlin et al 2011,
Beardon 2007).
This study intends to add to that existing body of knowledge through findings gathered from a tex-
tual analysis of literature and quantifiable data gathered from the researcher’s primary research
project.
The introduction of the Autism Act (2009) has shown the government’s commitment to address the
issues and problems that many people with autism face and has set out a new autism strategy.
With the introduction of statutory guidelines designed to drive future change in the delivery and
quality of provision and the recognition that a holistic approach is needed in meeting the needs of
the individual, the problems experienced by many during transition should become a thing of the
past.

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LITERATURE REVIEW
‘If you have a camel which is finding it hard to walk under the weight of all the straws on its back,
the easiest way to make it easier for the camel to walk is to take as many straws of its back as
possible’, and not to train ‘….the camel to walk or appear to walk whilst carrying the straws. To
take the straws off the camel’s back you have to do two things. One is to identify them and second
is to know how to remove them’. ~ Williams 1996 (pg.87)
1.1 TRANSITION
“transition is most often defined as the movement from childhood into adulthood and is a time of
considerable psychological and social change” (Sloper et al 2010).
For many young autistic people transition can be made more difficult because it is often
accompanied by significant changes in their care needs and in the level of service provision as
they transfer from children’s to adult services. According to the SEN code of practice (DfES 2001),
transition planning should start for young people at the age of 14, at their annual review, and
include social services, connexions, health and other appropriate related services such as
housing. Studies have shown that for many this is not the case with as little as 33% of children on
statements at mainstream school receiving any transition planning at all (NAS 2007).
The confusion for many AS individuals, and their families, lies in the transition process itself where
an individual crosses over from one specialist service provider, to another. How successful
individuals are at dealing with their own challenges depends greatly on the support and
understanding they encounter in their own social worlds (Ridout et al 2012). However, despite
recognition and early intervention now becoming the norm, studies conducted in the last decade
indicate that those assessed as having a good to very good outcome still remains below 20%
(Howlin et al 2012).
For many individuals with AS, entitlement services are lost once they leave school, or go into
further education or training, leaving the responsibility for coordination and access to services to
fall on their parents (Lawrence et al 2010). Young adults with a diagnosis of AS or ASD often fail
to access adult services as they fail to meet the Fair Access to Care Services (FACS) criteria set
by local councils in relation to social care (Ridout, et al 2012). Despite Fulfilling and rewarding
lives: The Strategy for Adults with Autism in England (DoH2010) mainstream services lack
awareness and understanding of these disorders leaving young people at risk, with needs unmet,
as a consequence they suffer poorer outcomes (Ridout 2012).

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It has also been observed that many adolescents with AS suffer from higher levels of anxiety and
depression than the normative population, even if there is no previous co-morbid diagnosis
(Robinson, Curwen & Ryan 2012). It is often during the process of transition that many individuals
with AS and ASD suffer from mental health problems which are anxiety and depression related
(Kim et al 2000, Coussens et al 2006).
Whilst research studies consistently indicate that the process of transition plays a significant role in
determining the outcome of these individuals, it acknowledges that poorly planned transitions
contribute to the later exclusion from social services and life opportunities and can have a
devastating effect on the individual (Kaehne & Beyer, 2009).
Service provision tends to be organised around age bands or life stages rather than centred on the
needs of the individual at critical stages in their lives, with young adults with autistic spectrum
disorders being identified as having significant needs. As highlighted in a report by ECOTEC
(2010) on behalf of the Big Lottery Fund.
Recent studies carried out by the National Autistic Society (NAS), Autism centre for education and
research (ACER) and Sheffield Hallam Autism Research Centre (SHARE) concur in their findings
that there is a lack of clarity over whose responsibility it is to provide support for adults with autism
and that all agencies need to develop plans that meet the individual’s needs.
These problems are by no means unique to the UK, research in Australia and America also
indicates similar problems, including fragmentation of services and limited involvement of young
people and parents in transition planning (Ankeny et al., 2009; Winn and Hay, 2009; Powers et al.,
2007).
The government’s strategy (DoH 2010) admits that change will be a long-term process. However,
some action has already been taken; Five hundred thousand pounds has been committed by the
department of health to the training of front line health care professional on autism and autism
awareness. Another issue that is being addressed is the move to help people with autism into
employment. Some of these were initiatives that preceded the publication of the strategy (DoH
2010).
In response to the government’s strategy (2009) Warwickshire County Council have introduced a
successful brokerage model to the delivery of services for adults on the autistic spectrum who fail
to meet FACS. It’s success is due mainly to its low level service being provided by personnel
experienced in dealing with autism and the understanding of the needs of each individual ( NCB
2011).

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1.2 ASPERGERS SYNDROME
Autism is often referred to as an ‘invisible disability’ and its invisible nature is reflected in local
service provision (Rydzewska 2012). Despite advances in research and knowledge, autism
remains a pervasive developmental disorder which can effect greatly day to day functioning
(Billstedt & Gillberg, 2005). The term Autistic spectrum disorder (ASD) is used because while all
people with autism share three main areas of difficulty, their condition affects them in different
ways. Some can live relatively independently – in some cases without any additional support –
while others require a lifetime of specialist care (NAO 2009).
In 1981 Dr. Lorna Wing first used the term ‘Asperger’s syndrome’ to classify the diagnosis of a
group of young females with high functioning autism (Lawrence et al 2010), blurring the
boundaries between Leo Kanners first diagnosis of autism (1943) and those recognised by Hans
Asperger (1944). Asperger Syndrome (AS) is a lifelong developmental disorder that is considered
to fall at the higher functioning end of the autistic spectrum disorder (ASD) continuum (Frith, 2004;
Wing 1996, 2000). AS is characterised by a triad of impairments in social interaction, social
imagination and communication (Rydzewska, 2012), these symptoms are especially apparent
during the transition process (Jennes-Coussens et al, 2006).
It was not until 1992 that AS became a distinct disease and diagnosis, when it was included in the
tenth published edition of the World Health Organization’s diagnostic manual, International
Classification of Diseases (ICD-10) and was not recognised by the American Psychiatric
association as a separate pervasive developmental disorder until 1994 (Barnhill, 2007).
Due to the relatively recent recognition of AS there is a scarcity of longitudinal outcome studies on
adults with AS (Barnhill, 2007; Howlin et al 2012). Much of the research conducted has been
based on child studies with statistics showing a steady increase in the prevalence of ASD from 4
per 10 000 in the 1970’s, to 100 per 10 000 (1% of the child population) in studies from the mid
1990’s onward (Baird, Simonoff, Pickles et al 2006), with an increased prevalence amongst males
(1.8%) as opposed to (0.2%) in women (Brugha et al 2011). This is also congruent with the
findings from the study conducted by Shattuck, Roux et al (2011).
It is suggested that the diagnosis bias towards males is because ASD is an extreme form of the
male brain (EMB); males have a stronger drive to systemise. Whilst diagnosis in females is more
difficult due to the natural female drive to empathise. Research has shown that on the Systemizing
quotient individuals with ASD score higher than neurotypical males (Baron- Cohen et al 2011).
The increase in diagnosis is believed to be due to an increased awareness of the condition and
broadening of the definition of ASD (Fombonne 2003). This has significant implications for the

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government and the welfare system as demand for adult services increases over the coming
years, with current figures suggesting that the total cost of supporting adults, in the UK, with
autism is twenty-five billion pounds a year (Knapp, Romeo & Beecham 2007).
1.3 POLICIES AND FRAMEWORK
The problems in provision of appropriate services to support transition and in achieving positive
outcomes for young people have been repeatedly acknowledged in government policy and
guidance for a number of years (SPRU 2010). The SEN code of practice (DfEs 2001) set out
specific requirements for transition planning as well as the connexions service (DfEE 200) specific
remit to provide support to disabled young people through transition ( IBID).
The National Service Framework (NSF) for Children, Young People and Maternity Services
(DoH/DfeS, 2004), Standard 4 and 8 specifically address the need for age appropriate services
with particular attention on the need for support during transition. The Aiming High for Disabled
Children programme (DfES 2007) further highlighted the government’s commitment to improving
opportunities for disabled children, including supporting transition, resulting in the introduction of
the national transition support programme (TSP), the aim of which was to raise the standards of
transition across all local areas.
Building on the success of the strategy of Valuing people (HM Gov,2001), Valuing People Now
(HM Gov, 2009) acknowledged that improvements to services for disabled people had been made
though many services have not specifically addressed the needs of some groups of people with
learning disabilities, including those with Autism (SPRU 2010). A report from the Government’s
social exclusion unit (NAS 2007) has recognised that those with autism are more likely to
experience social exclusion than other people. This is partly due to the fact that many with ASD
demonstrate impaired social interaction, repetitive patterns of behaviour and have restricted
interests, thus making it essential that a person centred approach is used when considering a
systematic assessment of an individual’s comprehensive need (Lawrence et al 2010).

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In 2008, campaigning for the rights of disabled people; MP Cheryl Gillan was successful in putting
forward a private members bill on autism. After successful campaigning the bill was accepted and
in 2009 the Autism Act became the first disability specific law of its kind in England.
The Act did two key things. The first was to put a duty on the Government to produce a strategy
for adults with autism. The second was a duty on the Government to produce statutory guidance
for local councils and local health bodies on implementing the adult autism strategy by the end of
2010 (NAS 2012). This was followed in March 2010 with the strategy for adults with autism in
England ‘Towards fulfilling and rewarding lives’ with specific areas for action including enabling
local partners to plan and develop appropriate services for adults with autism in order to meet
identified needs and priorities (DoH 2010).

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1.4 OUTCOMES
The connexions service is responsible for overseeing the transition process for pupils with
statements and should provide young adults and their parents with information, counselling and
support to identify the most suitable provision (NAS 2007). However, a recent report highlighted
that only 29% of local authorities said training for Connexions advisors covered ASD (NAO 2009).
Critics of the connexions service have admitted that whilst there have been examples of good
practice in services working together, they found that the role was often not clear to disabled
young people and their families, and that the service needed to do more to include parents and
carers (SPRU 2010). Criticism included advisors with large caseloads and lack of time, along with
lack of training and skills in communication and training about autism (SPRU 2010).
Many of the difficulties experienced by young adults with AS and ASD are as a result of poor
understanding of autism by frontline professionals (Higgins 2009). Assessment criteria for adult
care services are more stringent; those with a co morbid diagnosis of mental health problems or
additional learning difficulties may be eligible for support whilst someone with AS or high
functioning autism will fail to meet the assessment criteria.
A lack of timely support can often lead to greater support needs and more intensive intervention in
the long term (Higgins 2009).This concurs with finding from the ‘I Exist’ (NAS 2008) campaign
which indicated that 60% of parents said that a lack of support has resulted in their son/daughter
having higher support needs in the long term and 63% of adults with autism have not enough
support to meet their needs (Le Couteur 2011).
This ‘catch 22’ situation means that those with a diagnosis of AS or ASD, without a co-morbid
diagnosis, fall between the gap created by the learning disability team and the mental health
support team (ECOTEC 2010). Young adults with AS appear to show higher levels of anxiety than
their peers, even when not diagnosed with an anxiety disorder (Robinson et al 2012) the effects of
which can have a negative impact on a successful outcome.
Findings published by White and Roberson-Nay (2009) indicated that 75% of respondents
diagnosed with AS or ASD, 25% were above the clinical cut off score for one or more anxiety
disorder even though they had no formal co morbid diagnosis
A report by Emerson and Hatton (2011) Estimating Future Need for Social Care among Adults
with Learning Disabilities in England: An Update, concludes that there will be a sustained growth
in the need for social care services for adults with learning disabilities over the time period 2011-

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2030. With estimates indicating a population increase, from between 49,000 to 116,000, of adults
with learning disabilities over the next ten years.
The consensus within research literature is that provision for people with AS or ASD should be
person centred, accessible, participative, engaging, flexible and relevant (Rydzewska 2012) and
that services need to be delivered by trained staff that understand the complexity of the disorder
and are aware of the wide range, and often hidden needs of an individual with autism.
This is echoed in the autism strategy Towards 'Fulfilling and rewarding lives' the first year delivery
plan which states that the goal of social care today is to deliver personalised services that give
each individual the right support to live a more fulfilling life (DoH 2010).
“Better outcomes for people across the whole autism spectrum could be achieved by greater
awareness in strategic planning and commissioning and better knowledge among those
responsible for assessing and meeting the needs of people with autism” (NAO 2009).
It is hoped that better outcomes can be achieved by investing in carefully targeted, low-cost, early
intervention services such as those provided by the Greater Manchester Consortium.
Collaboration between the ten local authorities allows a specialist autism team to intervene when
service users have a low level of need, thus making it possible to reduce the chances of mental
health problems and the need for high cost intervention services (Higgins 2009). The report
‘Supporting people with autism through adulthood’ (NAO 2009) underlines the potential costs and
benefits of providing more effective and appropriate services for adults with high-functioning
autism.
This sentiment is echoed throughout government reports emphasising the priority of the autism
agenda and the needs to provide a viable and sustainable approach to provision.

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METHODOLOGY
‘One goal of scientific research is to be self-policing through rigour and consistency of practice.
This is necessary if the conclusions drawn are to be valid and replicable’
(Black, T. 2000).
INTRODUCTION
For the purpose of this study, the researcher needed to engage the participation of young adult
males on the autistic spectrum. Having given their consent the participants were required to
complete an anonymous questionnaire with the option to take part in a focus group study.
As the parent of and AS young adult the researcher was aware of the potential difficulties in
engaging the participation of this identified group as many AS and ASD sufferers find it difficult to
engage in social and group activities.
The shortcoming of undertaking social science research is that the consideration of many different
variables, some often impossible to control, make it difficult to achieve a coherent approach to the
research than for other academic fields (Black 2000). Therefore a wide variety of research
instruments, tools and approaches are often employed to tackle the issues that need to be
addressed, within the restraints of resources available.
It tends to be a general rule that in quantitative research the larger the sample the more accurate
the results (Dawson, C 2011).
Initially consideration had been given to a research programme that included the participation of
both male and female AS and ASD sufferers, taking into account individuals who also had a co-
morbid diagnosis of anxiety and other mental health related problems. However, as time restraints
were a limiting factor for conducting research, the decision was made to narrow the field of focus
for the study.
This decision would reduce the number of respondents available to take part in the study. The
researcher was aware that such a small sample would not be representative of the population
study as a whole but findings could support the potential to conduct a more in depth study given a
greater timescale.
"It seems that for success in science or art, a dash of autism is essential" ~ Hans Asperger.

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2.1 PRIMARY RESEARCH
For this research project, primary research was conducted in two parts. The first part was carried
out in the form of a questionnaire with the second part taking the form of a focus group study.
As the study was examining the problems encountered by young adult males with ASD this
allowed the researcher to use a purposive sampling method. This sampling was done through the
distribution of a questionnaire amongst students, in a higher education establishment, that were
known to have learning difficulties within the autistic spectrum. Students who completed the
questionnaire also had the option to participate in a follow up group study.
This combination of purposive sampling is a method often employed by researchers in the field of
social science, for the purpose of gathering qualitative and quantitative data. This method was
used effectively by ECOTEC (2010) as part of their two year study on age appropriate services for
young people with neurodevelopmental disorders.
In following current research practices the researcher decided upon the use of both of these
methods as a means to increase the validity of their findings.
Careful consideration has been given to the appropriate methods which reflect the desire to
produce both valid and quantifiable results. Positivism, though challenged, is still the dominant
model for research, proponents of which include Comte, Mills and Durkheim (Bordeau 2011)
According to Hirschheim (1985) this approach “is so embedded in our society that knowledge
claims not grounded in positivist thought are simply dismissed as scientific and therefore invalid”

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2.3 SECONDARY RESEARCH
For the purpose of secondary research the researcher opted to conduct a scoping review of
current literature pertinent to the process of transition for adult males (16-25yrs) with a diagnosis
of AS or ASD. The purpose of which was to provide an overview of how research findings
correlate to legislative guidelines and current practices within the adult service sector.
As with the primary research, timescale restraints were a limiting factor. For that reason the study
was restricted to the examination of material from the year 2000 to the present date (2012).
This allowed the researcher to take into account current legislative changes and compare them
with the latest research findings.
Scoping reviews have been described as a process of mapping the existing literature or evidence
base (Arksey H, O’Malley L, 2005). This ‘Snapshot’ of existing literature provides the researcher
the basis on which to form their hypothesis. It can also help to identify a more specific research
question of interest, based on what was already known (Armstrong et al 2012).

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2.3 QUESTIONNAIRE - (PRIMARY RESEARCH A)
Questionnaire studies often fail to produce high quality; generalizable data yet can be effective in
producing quantifiable results when used within a mixed methodology study.
The questionnaire was designed to take into consideration the complexity of the needs of the
targeted audience. This included the possibility of a co-morbid diagnosis of Dyslexia and sensory
processing issues.
Accommodating potential underlying learning difficulties that could lead to anxiety issues over
engaging in a new activity were factors that were given some deliberation. Consideration was
therefore given to the presentation, font size and format together with the option of printing on
coloured paper.
With this in mind the resultant questionnaire consisted of both open and closed questions laid out
in an easy to read and answer format at the end of which participants could indicate their choice to
take part in a follow up group study.
Coloured acetate overlays were provided for any students who may experience sensory issues
such as visual stress or dyslexia. The use of overlays mitigates the difficulty that reading text on a
glaring white background can present.
The option to complete the questionnaire under the supervision of a HELM was also made
available to any participants who felt the need of additional support.
These measures were addressed as the researcher wanted to engage the participants in a
manner that made them feel comfortable and confident about their participation.
Limiting factors would include the number of students available and willing to participate in the
study as well as the number of completed questionnaires.

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2.4 FOCUS GROUP - ( PRIMARY RESEARCH B)
For the purpose of this ethnographical study the researcher has chosen to take a post- positivist
(Scientific) approach as it allows the researcher to assume a learning role rather than a testing
one, aware that conclusions may change over time. Many of the problems that we wish to
investigate do not lend themselves to ready answers (Ryan, A 2006).
The study group consisted of the respondents who had completed the questionnaire and indicated
their willingness to participate further in the research project. The researcher liaised with these
participants and agreed a venue and time that fitted in with their scheduling.
By engaging the participants in this manner and accommodating their different needs increases
the opportunity of productive dialogue, between each other and the researcher, and impacts on
the value of their participation in this type of study.
The results from the study provide quantitative data that can be used as a comparison against
findings gathered from other research studies, into the same field of autism, using similar
methodologies.
Limiting factors to the study included the withdrawal from the study of previously willing
participants, difficulty in arranging a time for the study that fitted in with all participants scheduling
and the cooperation of participants on the day of the study.

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2.5 ETHICAL CONSIDERATIONS
There is clear historical evidence of the abuse of people with learning disabilities within research
(Gustafsson et al. 1954; Krugman et al. 1962) and the potential for such violation within
contemporary learning disability research remains (SHARE 2011). Official definitions of learning
disabilities differ but for the purpose of this study the researcher has chosen the definition as used
by the government in their white paper “Valuing People” which sets out their strategy for dealing
with disabilities in the 21st Century.
The researcher has, in accordance with the British Educational Research Association (BERA)
ethical guidelines, article 16 - Children, Vulnerable Young People and Vulnerable Adults, given
consideration to the ethical issues in conducting research with a group identified as vulnerable
adults.
This was reflected in the consent form, drafted by the researcher, which gave priority to the
welfare of the participant at all times. All participants were made aware of the contents of the
consent form and confirmation of consent was sought before any further participation in the study
was considered.
2.6 IMPACT
The number of participants with a diagnosis of AS or ASD within the participating establishment
were unknown to the researcher prior to the undertaking of the study. Therefore the researcher
was aware of the potential for there to be a limited number of participants involved in the study and
the effect this could have on their findings.
Whilst the results may not be substantial enough to add to the existing body of evidence, they
could be used by the Higher education establishment to reflect upon their own practices in
supporting students with learning difficulties during the process of transition.

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FINDINGS
"Nobel prize-calibre geniuses often have certain core autistic features at their heart" Allan Snyder,
director of Sydney University's Centre for the Mind.
3.1 INTRODUCTION.
The transition to adult hood presents a complex array of challenges, unique to a young adults with
AS or ASD. As they experience biological, social and psychological changes their perceptions,
expectations and experiences of relevant services change too (RCN 2007). During this stressful
period, a comprehensive assessment of needs should be arranged in order to facilitate a
successful transition (Lawrence et al 2010).
“Greater awareness of the numbers of people with autism, as well as better understanding of
autism amongst those providing health, social care, benefits, education and employment services,
would lead to improved quality of life for those on the autistic spectrum (NAO, 2009). With the
introduction of the Autism Act 2009, specific legislative responsibility has been placed upon the
health and social care sector, and other organisations, to provide autism training for all staff with
particular emphasis of specialist training for all frontline staff.
“Specialist support and joint working across all areas – clinical, social and employment – could
improve the transition from childhood to adult services, make services more effective and improve
value for money" (NAO 2009). The autism strategy sets out a number of policies in relation to
transition including the development a ‘health Action Plan’ for all young adults, covering health
care, social skills and independent living (DoH 2010).

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3.2 RESULTS OF THE STUDY GROUP/QUESTIONNAIRES
“It is one thing to control your own behaviour and quite something else to manage the behaviour of
others” (Rudestam 2001)
When considering the undertaking of this study, the researcher was aware of limiting factors that
could impact upon the quantity and quality of her findings. Comparative studies have revealed that
exact numbers of student in further and higher education, with AS or ASD, are often not known as
not all student with autism declare it as a disability (NAO 2009). This could account for the
relatively low uptake and participation in the study, though the number of respondents engaged in
the study can be considered proportionally representational of this purposive sample group.
Of the twenty questionnaires distributed throughout the learning support department only 30%
were returned completed. Reasons given for failing to return the completed forms ranged from
accidentally leaving them at college or home, forgetting to hand completed forms back or losing
them.
Of the respondents that completed the questionnaire, 50% agreed to participate in the follow up
study group. This was arranged at a time and venue that suited their scheduling.
For ease of reference findings from the study group have been collated to correspond with the
questions on the questionnaire. The results of which can be found collectively in the following
section.

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3.3 ANALYSIS AND FINDINGS
For the purpose of analysis, in this section, all questions will be referred to in the order they
appear on the questionnaire. A copy of which can be found in the appendices section of this
report.
Question 1 & 2.
The respondents were asked to identify which age group they belonged to. Results from the
questionnaire indicated that 50% of the respondents were in the 16-18 age categories, 17% were
in the 19-21 age category and the remaining 33% were over 21years of age.
They were also asked to confirm the diagnosis of their disability. 33% of respondents had a
diagnosis of autistic spectrum disorders (ASD) whilst the remaining 67% had a diagnosis of
Asperger’s Syndrome (AS).
Fig 1. This chart illustrates the respondent’s age range and diagnosis criteria.

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Fig 2. Represents the % of respondents diagnosed with AS and ASD.
The identified prevalence of ASD’s has been increasing steadily since the early 1990’s (Shattuck
et al 2012) Using the threshold of a score of 10 on the Autism Diagnostic Observation Schedule
(ADOS)*, statistics indicate that 1% of the adult population has autism (APMS 2007).
* This scale is recommended in ‘Autism: recognition, referral, diagnosis and management of adults
on the autism spectrum’ (NICE clinical guideline CG142.)
Question 3, 4 & 5.
The study revealed that the majority of respondents had an early diagnosis of their condition.
33% had an early pre-school diagnosis whilst 50% were identified and diagnosed at primary
school age. All respondents had learning support measures put into place at both primary and
secondary school with all respondents in agreement that they had benefitted from that support

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This concurs with the findings of Howlin et al (2012), that factors such as early intervention,
identifiable diagnostic criteria and the provision of specialist educational support have significantly
increased over the last two decades (APMS 2007 & Barnhill 2007).
One respondent indicated that whilst their learning difficulties had been accommodated at primary
and secondary school, a formal diagnosis of AS was not established until much later. Prior to this
the respondent had been diagnosed as having ASD. This respondent was unable to clarify why his
diagnosis had changed, though research suggests that often a diagnosis of AS is identified around
the time of adolescence (Howlin & Asgharian 1999),
The debate still continues over the definitive differences between a diagnosis of Asperger’s
syndrome and autism with some questioning at what point a person with Asperger’s has a
disability rather than an eccentric personality (Portway & Johnson, 2005).
The respondent was also unaware of the potential impact a change in diagnosis might have on his
ability to access future provision. Whilst identification of severe forms of autism is easier, despite
the ADOS, there is currently no mechanism for identifying those with or without mild intellectual
disabilities (Mills & Francis 2010).
Controversy currently surrounds the reclassification of ASD by the American Psychiatric
Association (APA) to DSM -5, one of the two main international sets of diagnostic criteria for
autism spectrum disorders. For diagnosis criteria the UK uses the ICD-10* standard, giving
diagnosis classification to groups such as higher function Autism and Asperger’s Syndrome.
The proposed changes by the APA alter the severity level of diagnosis and introduce a new
diagnosis of social and communication disorder. This will result in the non-recognition of sub group
conditions of autism such as Asperger’s syndrome. If the proposed changes are adopted by the
ICD, a new classification of the condition will be given in the revised edition ICD-11 due for
publication in 2015.
If the proposed changes occur, the implications for provision of services could have a devastating
impact on service users. The NAS regards the proposals, in their current form, as not fit for
purpose (NAS 2013).
* The ICD-10 is the International Classification of Diseases standard diagnostic tool for
epidemiology, health management and clinical purposes. This standard was endorsed by the 43rd
world health assembly and later adopted by the world health organisation (WHO) in 1994 (WHO
2013).

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Question 6.
Factors that determined the level of learning support given varied for each individual despite some
individuals having the same clinical diagnosis.
Respondents understanding of the amount of support they received varied according to their
perception of what constitutes a high or low level of support. For some respondents this perception
was based on previous experiences in a change of support combined with a lack of awareness
and understanding of the change in provision.
For other respondents there was awareness and understanding of a change in their provision,
however, there was some confusion and lack of clarity over what level of support they thought they
were entitled to.
Though all respondents are currently attending a further or higher education course, all but one
was in receipt of some level of learning support. Of the 67% of respondents that had a diagnosis
of AS, 33.5% were receiving a high level of support whilst 16.75% were receiving a minimal
amount of educational support.
The other 33% diagnosed with ASD were also receiving some level of educational support.
The respondent with a diagnosis of AS not receiving any support was in the age group 21+ and
was currently attending higher education.
Discussions in the study group revealed that whilst the respondents were happy for the provision
of learning support, some felt that the change from secondary provision to further education
provision was confusing and left them feeling insecure and struggling to cope with the demands of
their course. It is during the transition from secondary school to further education that the failings
by connexions and social services occur (NAS 2007). One participant felt that their needs had not
been understood as emphasis had been placed on academic ability and not social ability thus
leaving him feeling anxious and stressed about managing his college workload.
In 1999 the Joseph Rowntree foundation made recommendations that “a more integrated and
needs led approach to the commissioning and provision of services is required”, this compares
with findings by the Department of health that a well-planned transition should accommodate the
underlying needs of the individual (DoH 2008) and failure to identify those needs can lead to an
individual developing long term mental health problems due to increased levels of anxiety (APPGA
2009). Despite these recommendations confusion and lack of clarity over who should provide
support is still apparent today.

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Poorly planned transitions, insufficient communication between service providers and a lack of
expertise by frontline professionals are all contributing factors in preventing those with ASD
gaining access to adult services (Ecotec 2010, NAS 2007). Recommendations made by
government reports state that local authorities should ensure that all professionals supporting
young people with autism should have autism awareness training (APPGA 2009). The guidelines
issued by the National Institute for Health and Clinical Excellence (NICE), on staff training,
awareness and understanding of autism (BMJ 2012) go some way to addressing this issue.
Fig. 3. This chart indicates the level of support currently received by respondents.
In the age group 16-18yrs, the respondents diagnosed with AS receiving the highest level of
support displayed peculiarities of communication and disability (e.g., stimming) often associated
with autistic people. These external indicators often increase when the individual experiences
increased levels of stress (Goldman et al 2009). It was not made clear to the researcher if either of
these respondents had a co morbid diagnosis with anxiety, mental health or other prevailing
disorders.
Their severity of impairment suggested that they required a greater level of support within the
academic environment, as opposed to those respondents who did not display any impairment.

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The respondent in the same age category, receiving a minimal amount of support, was unsure
why this was the case as all through primary and secondary education a full statement of
educational needs with 1to1 support had been provided. He expressed his concerns in his ability
to cope with his studies and saw no obvious solution other than to manage himself.
He did not display any signs of impairment and was studying A levels with a view to going to
university.
With the government aiming to increase the compulsory schooling age to 18yrs, SEN provision up
to this age needs to be taken into account, without a specific strategy for supporting these young
adults, the government will not hit its target of full participation (APPGA 2012).
Throughout the group study it became clear that those diagnosed with AS and not displaying any
impairment, had varying levels of difficulty with the social use and comprehension of language.
One of the hallmarks of AS is impaired social awareness, interaction and use of language (Frith
2004).
Though as part of this study IQ tests were not conducted with the respondents’, there is evidence
to suggest that intellectual ability (IQ) of an individual is directly related to their outcome (Howlin
2000). Research supports the hypothesis that, those with an IQ >70 in general do better in adult
life and have improved outcomes compared to those with an IQ< 55 (Goode et al 1994).However,
results also indicated that outcomes varied according to the degree of support given by families,
employment and social services (Barnhill 2007). In contrast, studies indicated that those with an
IQ >70 and have no enduring mental illness often lose out on support as learning disability
services are structured to support those with a lower IQ (Rydzewska 2012).
Evidence to support the idea that IQ is a determinant factor to a successful outcome is
inconclusive, though studies suggest that those with an IQ < 55 remained highly dependent on
social services and family support throughout adulthood (Eaves 2006).
It is at the point in transition, from secondary education to further education, that the issues of
support become problematic. This could be because AS or ASD is classed as a developmental
disability. Those with a diagnosis of AS/ASD without an accompanying learning difficulty or mental
health need fail to meet the assessment criteria (FACS) for adult services and find themselves
facing significant changes in provision (Mohammadi 2011).

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Question 7 & 8.
The majority of respondents were aware that they (or their parents/carers) were in receipt of some
additional financial help as a result of their disability e.g., Disability living allowance (DLA),
disabled students allowance, direct payments or carer’s allowance.
Discussions with respondents revealed that few of them were aware of any other assistance they
might be entitled to, such as disability bus passes. All respondents agreed they were not aware,
nor could they recall, being given any information in relation to financial support or entitlement
during their transition review meetings. They all admitted that they would not know where to get
information from and assumed that if services were available to them then they would have been
told about it by either their parent/carer or student services.
The respondents in the age groups 16-18 and 19-21 all had a limited understanding of their
personal finances and lacked budgeting skills though most had access to their own bank
accounts. All respondents admitted they relied heavily on family, friends or student services for
financial advice and support.
Early into her discourse with the respondents, the researcher became aware of their collective lack
of social skills, or skills acquired through daily living (ADL’s). A lack of financial awareness and
social skills is one of the contributing factors of social exclusion for adults with ASD (National
Centre for Social Research 2009).
This was in contrast to the older respondents, in the 21+ age category, who managed their own
finances and family budgets successfully. These respondents were studying at higher education
with one respondent in full time employment.
This elucidates to research findings that despite having a diagnosis of AS or ASD, high functioning
autistic adults frequently achieve success in adult life despite a lack of adequate provision (Howlin,
2004).

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.Fig 4. Represents the % of respondents receiving financial support in comparison to those aware
of what extra financial support they might be entitled to.
Question 9.
In relation to their living arrangements the 50% of respondents still living at home and supported
by their families were all in the age category 16-18yrs.
16.5% lived alone in rented accommodation whilst the remaining 33.5% of respondents were living
independently with their partner/spouse and child/children.
A comparative study in Sweden on the outcomes of adults with ASD indicated that of those
diagnosed with AS 64% were living independently (Hendricks & Wehman 2009).
This concurs with similar findings that may individuals with autism want greater autonomy and
move towards independent living, away from home or institutionalised care (Howlin 2012). A
recent report indicates that with low intensity services many adults with autism can live

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independently within their community. Without access to such provisions there is an increased risk
for individuals to experience social exclusion and health related problems including mental illness
(NAO 2009).
Fig 5. This chart illustrates the living arrangements in relation to age category and diagnosis.
Whilst the sampling group displayed a normative range for the number of individuals living at
home or living independently, statistics indicate that 49% of adults with autism live at home with
their parents whilst 70% of parents of autistic adults feel their child would be unable to live
independently without support (Barnard et al 2001).

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Question 10 & 11.
50% of respondents were aware of receiving some level of support from social services. Though
33.5% expressed uncertainty as to what that support was or how much support they received.
These respondents still lived at home and admitted to relying heavily on the support of their
parents/carers in dealing with matters relating to welfare provision.
33% of respondents were not in receipt of any additional support with one respondent not in
receipt of any support or benefits despite having a confirmed diagnosis of AS.
When asked, would they have benefitted from additional support, had it been available, the
respondents gave a mixed and uncertain response. Discussion in the study group revealed that
the majority of respondents were aware of their different level of needs yet were unsure as to how
these would be accommodated, stating that their contact with services had been at best, poor and
confusing.
To be aware if any support would have benefitted them, the respondents would have needed to
understand what support might have been available to them. This appears not to have been the
case again highlighting the findings of the Commission for Social care Inspectorate (CSCI) that
services are often organised in a way that prevents people with autism being able to access them
(CSCI 2008).

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3.4 DISCUSSION
Whilst time and participant uptake had limited the scope and range of this study, the results from
the questionnaire and study group were consistent with findings gathered from current research
studies. The study also highlighted the point at which the change in the level of provision occurred,
coinciding with the transition from secondary education to further education.
Although research findings’ were critical of the lack of expertise by frontline users, and their failure
to adopt a person centred approach to provision, experiences by some of respondents in this
study indicated that little, if anything, has changed. For them the transition process appeared to be
focused on the move from one academic establishment to another with little or no explanation as
to the impact any potential changes in provision might have on their ability to stay in full time
education (NAS 2007). Lack of information as to what provision might be available was also a
common complaint amongst respondents.
It was evident that those with external indicators of disability were awarded a higher level of
provision and support from social services. This suggests that their diagnosis met with the criteria
required for provision from either the mental health or the learning support services.
Whilst the results of this study were comparative with similar studies in this field, it should be noted
that there is a wide variation in the quality and type of transition support available across the UK
(Kaehne & Beyer 2010), examples such as the Greater Manchester Autism Consortium and
Warwickshire county council have addressed measures concerning the needs of autistic people
and have implemented models of good practice that could be adapted by other regional
authorities.
The general recommendations are that local authorities and health services can provide a more
cost –effective service if all staff has some formal training in autism awareness in all areas of
service support (Ridout et al 2012) and develop effective communication across the range of
service providers that is consistent with the needs of the service users.

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3.5 CONCLUSION
At the beginning of this study the research objectives were to critically examine the influencing
factors, in conjunction with analysing the role that support plays in determining a successful
transition to adult services for young adults with AS or ASD.
During the process of this study it became apparent that it was impossible to identify all the factors
that influenced an individual’s outcome as influencing factors vary according to an individual’s
experience and circumstance at any given time during the transition to adulthood.
What did become apparent was that a successful outcome was more closely associated with the
quality of support provided rather than the quantity. Even though, as for many individuals, this
support was given by family and close friends that understood their condition.
A report issued by the National Audit Office (2009) criticised the Government departments for
health and social care on their lack of information about the numbers of adults with autism in the
UK and their inability to provide adequate services to this population due to lack of awareness and
understanding of the disorder by healthcare professionals.
If successful outcomes for individuals with AS or ASD are to be achieved then a greater
awareness of the condition needs to be established, not just in the health and social care sectors
but also in industry. Greater awareness and understanding of the condition amongst employers
could significantly improve the employment opportunities for many autistic individuals who struggle
to find sympathetic employers.
Taking into account the experiences of the respondents, along with the researcher’s personal
experience in dealing with autism, there is strong evidence to suggest that the process of
transition needs to be recognised amongst professionals as not being a ‘fixed’ process but one
that varies according to individual needs. The identification criterion that defines the transition to
adulthood may need to be re-defined in order to accommodate an individual’s ability to understand
what ‘transition’ means to them (Shattuck et al 2012).
For some it may mean a move towards greater autonomy and independent living, for others it
could just be the transitioning from one level of service to another. For all service users it is about
people understanding them and their condition and how it impacts on their daily lives. Support
should be developed using a holistic approach and assist towards greater social inclusion rather
than social isolation.
In a report published by the Autism education trust (AET), respondents to a questionnaire valued
personal qualities such as empathy and understanding as qualities that professionals working with

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autistic people should have. These responses have been used by the AET in conjunction with
Autism Centre for Education and Research (ACER) to develop the new competency framework for
professionals working with children and young people from 5-16yrs. The introduction of the Autism
Act has set out to address a similar strategy for young autistic adults through their statutory
guidelines that include competence in professionalism of service providers.
However ,if we are to develop a better understanding of what works for autistic people, further
studies are needed to examine the outcomes of adults, beyond transition and into later life (Howlin
et al 2012, Le Couter 2011, Beardon & Edmonds 2007) with an emphasis of listening to the voice
of autistic individuals.

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3.6 RECOMMENDATIONS
‘This is a once-in-a-generation opportunity to make sure that all children with autism have access
to the same opportunities as their peers: to continue their education, to acquire everyday skills,
and to live as independent a life as possible’ APPGA commission 2012.
The social care inspectorate recently described the process of moving to adult services as a
‘nightmare’ (CSCI 2007) with another government report describing it as a ‘Cliff-edge’ as support
suddenly falls off (PMSU 2005).
Only with and increased awareness and understanding of the condition can service providers pre-
vent those with Higher functioning Autism from falling through the gaps present in the current
system. Specialist knowledge and training in autism awareness should be a standard part of all
front line service users’ staff training.
A strategy for delivery of provision should be developed in collaboration with the families or carers
of an individual. The continuity of low level provision could be maintained through regular contact
with appropriate services allowing for any adjustments to support to be better anticipated. This
could alleviate the need for more expensive intervention strategies as individuals are not left to
cope until they get to crisis point.
Further and higher education establishments could address issues within the learning support de-
partment by ensuring that appropriately qualified staff are allocated to appropriately identified
students, ensuring the maximum benefit from the support given. Student services should have an
allocated information officer who can provide students with an information pack that includes
financial and practical information on what benefits or concessions might be available to them.
Social and life skills workshops should be included as part of the curriculum, with the emphasis on
developing independence and employability. This should form part of the learning support pro-
gramme for those individuals identified as benefitting from such a programme.
Autism is often referred to as the ‘invisible’ impairment (RCN 201) with improved awareness and
training; autism need not be an invisible disability but an accepted variation of an individual’s per-
sonality.

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“Think of it: a disability is usually defined in terms of
what is missing. … But autism … is as much about
what is abundant as what is missing, an over-
expression of the very traits that make our species
unique.”
― Paul Collins, Not Even Wrong: Adventures in Autism

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Davies, J. Children with autism: A booklet for brothers and sisters. Fine print, Nottingham.
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GLOSSARY OF TERMS
ACER – Autism Centre for Education and research.
ADOS – Autism Diagnostic Observation Schedule.
APPGA – The All-Party Parliamentary Group on Autism.
AS – Asperger’s Syndrome.
ASD – Autistic spectrum disorder.
BERA - British Educational research Association.
CSCI - Commission for Social care Inspectorate.
DoH – Department of health.
DSM - Diagnostic and Statistical Manual (American Psychiatric Association).
FACS – Fair Access to Care Services.
ICD – International classification of diseases.
NAO – National Audit Office.
NAS – National autistic Society.
NEET – Not in Education, Employment or Training.
NSF – National Service Framework.
QCC – quality care Commission.
SEN – Special Educational Needs.
SHARE – Sheffield Hallam Autism research Centre.
TSP – Transition Support Programme.

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APPENDICES
5.1 APPENDIX 1 – EVALUATION OF THE LEVELS OF PROVISION QUESTIONNAIRE
Before starting I would like to thank you for kindly agreeing to participate in this research
survey.
Please read through the questions first before completing this questionnaire. If you
are unable to answer a question leave it and go onto the next question. Additional space has
been provided at the end of the questionnaire for you to write any information that you
would like add for my consideration.
Q1) Please indicate which age group you belong to? 16-18 □ 19-21□ 21+ □
Q2) Please indicate any learning disability if any.
Asperger Syndrome □ Autism □ other □ None □
Q3) Which group best fits your approximate age of diagnosis
Pre School □ Primary □ Secondary □ Post 16 □
Q4) Did you receive any learning support at school? Yes □ No □ Don’t know □
Q5) If you received support do you feel you benefitted from it?
Yes □ No □ Don’t know □
Dissertation research project Questionnaire.
Evaluation of the level of provision provided for young men (16-25yrs)
with Aspergers Syndrome/ High Functioning Autism during transition to
adult services.
Mrs H Abbott. BA Hons Health & Social Care 2012/13.

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Q6) Do you receive any learning support now? Yes □ No □ Don’t know □
Q7) Do you or your family/main carer receive any financial benefits because of your
disability? (E.g Carer’s Allowance or Disability Living Allowance).
Yes □ No □ Don’t Know □
Q8) Has anyone, at any time, explained what support you might be entitled to and how you
would apply for it? Yes □ No □ Don’t know □
Q9) Are you currently living at home with your parents/family? Yes □ No □
If you answered No, please can you give some information as to your living arrangements
(e.g., Living in own flat or living in student accommodation etc).
Q10) Do you or your family/carer receive any support from other agencies or organisations?
(E.g. Social services, Disability support groups).
Yes □ No □ Not sure □

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Q11) If you didn’t receive any support, do you feel you would have benefitted from it had it
been available to you?
Yes □ No □ Not sure □
Please write any comments that you would like me to consider, in relation to any of the
questions you have just answered, in the space provided.
THANK YOU FOR YOU TIME AND COOPERATION.

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5.2 ETHICS FORM
Instructions: Before filling out the survey questionnaire please, first read carefully
and sign this “Informed Consent” Form. If you have difficulty in understanding
this consent form then please ask someone responsible for you trust to read it and
explain it to you so that you fully understand what you are consenting to take part in.
This form must be returned with the questionnaire in order for me to include your
comments in my study. In compliance with the Ethical guidelines for Educational
Research(BERA) all information will be kept confidentialand no personal details will
be used for the purpose of my research.
Title of Research Project:
Evaluation of the level of provision provided for young men (16-26yrs) with
Aspergers Syndrome/ High Functioning Autism during transition to adult services.
1. You are invited to participate in a research study conducted by Mrs Helen Abbott.
Your participation is strictly voluntary. Before agreeing to participate, you should
know enough about it to make an informed decision. If you have any questions,
please ask and be sure you are satisfied with the answers before participating.
2 The purpose of the study is to learn what the level of provision, if any, was
provided to an individual during their transition to adult services and did this
influence their outcome.
3. Participation in this study involves the following:
A) The completion of a short questionnaire.
B) Take part in a focus group, led by the researcher, to share and discuss their
experiences with other individuals in the same situation (optional)
4. There are no known risks associated with this research project other than
possible discomfort with the following:
• You will be asked to be completely honest about yourself when completing the
form.
• You will be asked questions about personal experiences during the focus group
session.
5. Possible benefits from participation in this project are:
• You will have an opportunity to reflect on your experiences.
• You will contribute to the growing body of knowledge about the subject area.
INFORMED CONSENT FORM
FOR PARTICIPANTS IN HELEN ABBOTT’S BA HONS RESEARCH
PROJECT.

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• You will help to improve the program for future focus group participation.
6. Participation is voluntary. You may choose not to participate, and you may
withdraw at any time during the research project. In addition, you may choose not to
answer any questions with which you are not comfortable. You will NOT be
penalized in any way should you choose not to participate or to withdraw.
7. As part of this effort, your identity will not be revealed in any publications that may
result from this study. The information in the study records will be kept strictly
confidential. Individual data will be stored securely and will be made available only
to persons conducting the study. No reference will be made in oral or written reports
that could link you to the study.
8. If you have questions or concerns at any time about the study or the procedures,
you may
Contact the researcher Mrs Helen Abbott (Ba Hons Student) on 07718652297 or via
email at helenabbott@live.co.uk
===============================================================
A. I have read this consent form and have been given the opportunity to ask
questions. I hereby grant permission to use the information I provide as data in Mrs
Abbott’s research project, knowing that it will be kept confidential and without use of
my name. I will also retain a signed copy of this consent form for my own personal
records.
B. Participant’s Signature: Date:
C. I am willing to take part in a focus group (of about one hour) to discuss my
Experience’s further:
Yes □ No □
Please leave contact details if you are willing to participate in the focus group
activity.
Name:-
Contact Number:-
D. please indicate if you would like a copy of the findings at the end of the study?
Yes □ No □

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5.3 DATA COLLATION
Data Collation from Questionnaire
RESPONDENTS A B C D E F
Q1: age group 21+ 18 16-18 19-21 16-18 21+
Q2: Diagnosis ASD
+
selective
mutism
AS AS Autism AS AS
Q3: Diagnosis age primary Primary 16-18 16-18 Pre-
school
Pre-
school
Q4: Learning support at school? yes Yes yes yes yes yes
Q5: Benefitted from support? yes Yes yes yes yes yes
Q6: Receiving Learning support now? yes yes yes yes yes no
Q7: receiving any benefits? Direct
payments
DLA Yes
Not
known.
Yes
Not
disclosed.
Yes
Not
disclosed.
no
Q8: anyone explained what
Benefits entitled to?
yes yes no yes yes no
Q9: living at home? no yes yes no yes no
Q10: any additional support/ outside
Agencies?
Social
services
re: direct
payments
no Yes
( not
disclosed)
Not sure yes no
Q11: would you have benefitted from
support if not
Receiving any?
n/a Not sure N/a Not sure N/A Not sure
Additional comments Living in
rented
home
With
wife &
family.
Learning
support at
college
structured
differently
To
secondary
school. I
feel not
benefitting
from it.
Found
transition
at each
stage
most
difficult
to cope
with.
Living in
a rented
room.
Live in
own
home
with
fiancée
and
daughter.

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5.4 CORRESPONDENCE.
Mrs Helen Abbott,
30 Commonside,
Lytham, Lancs. FY84E
Tel: 01253 731527
helenabbott@live.co.uk
10/10/2012.
Dear Professor Howlin,
I am a mature University student currently in her third and final year of a BA Hons in Health &
Social Care. As part of my final year I am required to undertake a research project for my
dissertation.
My chosen area of study is the transition into adult services for young men (16-25) with Aspergers
syndrome/ High functioning autism. Critically examining the level of provision provided and the role
it plays in determining a successful transition into adulthood.
My interest in this area is partly due to the fact that my eldest son is currently going through this
transition process at the moment. He has Aspergers Syndrome.
I recently came across your study on the Research Autism website; Adult Life for People with
Autism and Asperger Syndrome: Achievements, Challenges and Needs and was interested in
finding out more about the study.
I would be extremely grateful for any information you might be able to provide me with that may be
of use for my research project. But more importantly, as a mother of a high functioning autistic
adult I am interested in what longitudinal studies have to say about what has worked and what
hasn’t in relation to provision and whether there is a direct correlation between the level of
provision provided and the successful outcome of an individual.
I hope you can help my enquiry and should you require any informational input from someone in
my situation, I would be more than happy to oblige.
Kind Regards,
Helen Abbott.

Helens Dissertation - Copy1

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