Information, Advocacy and Signposting as a Low-Level Support for Adults with High-Functioning Autism Spectrum Disorder: An Example from the UK
Information, Advocacy and Signposting as a Low-Level Support for Adults with High-Functioning Autism Spectrum Disorder: An Example from the UK
Kris Southby 0 1
Olivia Robinson 0 1
0 Institute for Health and Wellbeing, Leeds Beckett University , Leeds , UK
1 Centre for Health Promotion Research, Leeds Beckett University , Rm. 512 Calverley Building, City Campus, Leeds LS1 3HE , UK
2 Kris Southby
'Low-level' support is championed to support adults with high functioning autism spectrum disorder (HFASD) to achieve good quality health and social care, yet research in the area is sparse. Drawing on semi-structured interview data, this paper considers the efficacy of an intervention to provide low-level support to adults with HFASD with little or no funded support. The intervention led to a number of perceived positive outcomes for adults with HFASD, their families, and service providers in the city, including increased access to education, volunteering, support and information, socialising, improved health and wellbeing, and managing day-to-day. Although many of life's difficulties still persisted, the intervention helped service users overcome barriers to availing further support, possibly leading to beneficial outcomes down the line.
Autism spectrum disorder; Adults; High functioning; Health and social care; Support
Adults with autism spectrum disorder (ASD) who do not
have an associated learning disability—so called ‘high
(Lorenc et al. 2016)
—are at risk of
experiencing negative outcomes across a number of domains
of life and to “function well below the potential implied by
their normal range intellect”
(Marriage et al. 2009)
with high functioning autism spectrum disorder (HFASD)
have been found to experience poor and comorbid physical
and mental health issues
(Mazurek and Kanne 2010;
Hofvander et al. 2009; Howlin and Moss 2012; Lake et al. 2014;
Lugnegård et al. 2011; Mattila et al. 2010; Gotham et al.
; high unemployment, underemployment, and
(Baldwin and Costley 2016; Gotham
et al. 2015; Howlin and Moss 2012; Smith et al. 2012;
Taylor and Seltzer 2011; Lake et al. 2014)
; limited meaningful
social and romantic relationships
Wheelwright 2003; Farley et al. 2009; Jennes-Coussens et al. 2006;
Tobin et al. 2014)
; and struggle to gain autonomy and
independence in their lives
(Renty and Roeyers 2006; Lake et al.
2014; Howlin and Moss 2012)
. Considering that just over 1%
(and rising) of populations in the United Kingdom (UK) and
the United States of America (US) are thought to have ASD
(Autism and Developmental Disabilities Monitoring
Network Surveillance 2010; Brugha et al. 2012)
and that around
50% of these people are ‘high functioning’
Autistic Society 2016)
, the negative outcomes experienced
by adults with HFASD are likely to occur in large numbers
with significant costs to individuals and society
et al. 2013; Vogan et al. 2016)
and need to be addressed.
There is a need for appropriate support to be in place to
improve the quality of life for adults with HFASD
(Baldwin and Costley 2016; Engström et al. 2003)
. Indeed, the
availability of suitable support has been found to be a better
predictor of quality of life for adults with HFASD than
(Kamio et al. 2013; Renty and Roeyers
. Policy aims in Western countries to provide good
quality health and social care for adults with HFASD
Mental Health Commission of Canada 2012; National
Institute of Mental Health 2016; The Westminster Commission
on Autism 2016)
are therefore to be welcomed. In the UK,
the Autism Strategy for England
(Department of Health
, the Autism Act 2009, and the Care Act 2014 purport
to move services away from just crisis management towards
preventative services and support for adults with ASD
living in their communities. The most recent iteration of the
(Department of Health 2014)
importance of ‘low-level’ support services based around
interpersonal support networks and advice and information.
Such support should be available to all adults with ASD
“regardless of whether they are eligible for social care” or
(Department of Health 2015)
The aim of this paper is to consider the efficacy of
providing low-level support in the form of information and
signposting, advocacy, and mentoring to adults with HFASD.
The paper adds to a limited body of existing research
reporting the positive outcomes associated with low-level support
for adults with HFASD. Such interventions would appear
useful in fulfilling government aspirations of providing good
quality health and social care for all adults with ASD.
Low Level Support
Low-level support broadly concerns any non-intensive
service aiming to provide general support, which is not directed
at treating a clinical problem or deficit, to people in their
(Lorenc et al. 2016)
. The focus of low-level
support can be wide ranging and can be delivered through
a variety of settings, such as health services, social care,
the community, and telephone and internet based services
(Lorenc et al. 2016)
Previous research has identified positive outcomes for
adults with HFASD from different low-level supports across
different domains. Supported employment schemes have
enabled individuals to find and maintain employment
(Mawhood and Howlin 1999; West et al. 2013; Burke et al. 2010;
Lawer et al. 2009)
. Both formal and informal support groups
have been shown to benefit adults with HFASD in terms of
increasing peer relationships, social skills, decision-making,
and problem solving
(Jantz 2011; Hillier et al. 2007; Howlin
and Yates 1999; Tobin et al. 2014)
. Social-skills training has
been found to increase knowledge of social skills and social
functioning, and decrease loneliness
(Tobin et al. 2014;
Gantman et al. 2012; Palmen et al. 2012; Turner-Brown
et al. 2008)
As well as low-level interventions that aim to support
adults with HFASD in one domain of life or to achieve one
specified outcome (i.e. employment, acquisition of a skill), a
smaller number of interventions aim to provide more
holistic support. The autism ‘one-stop-shops’ in Scotland, for
example, are staffed and accessible premises that house
services for adults with HFASD and provide information about,
and signposting to, further support and services available
elsewhere. Evaluation of sites in Edinburgh and Glasgow
demonstrates the positive impact of autism one-stop-shops,
“improving the social, physical and emotion wellbeing of
adults with autism and building their capacity to live full
and independent lives in the community”
(Tait et al. 2013;
National Centre for Autism Studies 2006, 2007)
A recent systematic review, however, of the current state
of knowledge concluded that there is little or no evidence
relating to many low-level strategies for supporting adults
(Lorenc et al. 2016)
. As such, this paper will
contribute to the existing literature regarding the efficacy of
low-level supports for adults with HFASD.
About the Intervention
The research is based around the Leeds Autism AIM
(Advocacy, Information, and Mentoring) service (‘the service’),
which provides low-level support to adults with HFASD
with little or no funded support, their families and carers,
and other autism services in Leeds, England. The service
consists of three overlapping core activities, all free at the
point of use. Firstly, two weekly drop-in ‘autism hubs’—
one in the city-centre, one in the south of the city—provide
access to a range of support and information, café areas,
quiet areas, computer rooms, and meeting rooms for adults
with HFASD, their families/carers, and service providers.
The drop-in hubs also host external support services,
including advisors from the Citizens Advise Bureau and
Department of Work and Pensions, which users can access.
Secondly, ‘autism mentoring’ pairs individual service users with
a specially trained volunteer for one-to-one support. Drop-in
hub staff and mentors also act as advocates on behalf of
adults with FHASD. Thirdly, ‘information and signposting’
provides information about, and signposts people to, other
services in the region. Information is available in print and
by speaking to staff at the drop-in hubs, on the Leeds Autism
Directory website, and via telephone and email
correspondence with the service.
A small staff team delivers the service. A project
coordinator/manager has overall responsibility. A part-time
volunteer coordinator oversees the recruitment and training of
volunteers, who themselves support at the drop-in hubs or
act as mentors. A part-time information officer is responsible
for producing written materials and managing the website.
Two support workers are also funded by the local authority
to staff the drop-in hubs. Adults with HFASD are involved
in the service steering-group and operationally involved as
drop-in hub volunteers, peer-mentors, or in the delivery of
group sessions at the drop-in hubs. The service was initially
established in January 2015 with one drop-in hub (city
centre), mentoring, and the information and advice service. The
second drop-in hub was set up in the south of the city in
Since inception, service use has gradually and
consistently increased. The mean weekly attendance at the city
centred drop-in hub has increased from 12.5 (including
2.5 new users) to 28.75 (including 4.5 new users) by
September 2016, and the mean weekly attendance to the south
Leeds hub has increased from 4 to 8.7 by September 2016.
Between May 2015 and October 2016, the Leeds Autism
Directory website had an average of 559 visits per month—
‘employment’ was the most viewed section of the website.
Since the mentoring scheme began, 29 people have been
trained as mentors and 24 mentoring matches made. The
mentoring services has been consistently oversubscribed.
The intention of data collection was to explore the perceived
outcomes and impact of the service as well as key delivery
mechanisms and areas of improvement. A qualitative
methodology was adopted; drawing on qualitative data allowed
a rich understanding of the lived experience of the service
Semi-structured interviews were the main data collection
tool and illuminated the ‘lived experience’
of the service. Interviews were conducted in a range of
different formats to suit the preferences of participants,
including face-to-face at the city centre drop-in hub, via email,
and over the telephone. Interviews lasted between 12 and
58 min (mean = 22 min). Participants were asked about their
experience of the service, what outcomes they had achieved
through their involvement with the service, and how the
service could be improved. With permission from participants,
interviews were audio recorded and transcribed.
Sample and Recruitment
Given that adults with ASD and their families are the
de facto experts of their needs, problems, and priorities
(Gotham et al. 2015)
interview recruitment was weighted
in favour of adults with HFASD. An invitation to
participate was emailed by the service manager to everyone on
the service’s mailing list and a member of the research team
attended the city-centre drop-in hub on four occasions,
inviting those in attendance to be interviewed. The research team
also purposively sampled relevant professionals connected
to the service, including service staff, commissioners, and
local authority Adult Social Care staff. Thirty interviews
were conducted in total, including with adults with HFASD
(n = 14), family members (n = 3), volunteer mentors (n = 2),
and ‘professionals’ (n = 11). Following Lorenc et al’s (2016)
call for research to reflect the diversity of ASD, the sample
of adults with HFASD involved was heterogeneous in terms
of age, employment status, involvement with the service,
living arrangements, relationship status, and degree of
impairment. There were also some areas of commonality
between participants. Six adults with HFASD disclosed that
they had received a diagnosis of ASD in adulthood, whilst
three had been diagnosed in childhood and five did not say.
Seven adults with HFASD said that they had received
support from services outside of Leeds AIM; predominantly
mainstream housing and employment support. Five adults
with HFASD said that they had experienced, or continue to
experience, mental health difficulties (i.e. depression,
anxiety). That none of the adults with HFASD were from a black,
Asian, or ethnic minority (BAME) backgrounds, and that
twelve out of fourteen adults with HFASD were male, may
bias and/or limit the findings.
Interview data were subject to an interpretive thematic
(Braun and Clarke 2006)
using Nvivo. Four
transcripts were initially randomly selected and analysed
independently by both researchers before coming together to
discuss their interpretation. This involved reading the
transcripts and coding text pertinent to the research questions.
Related codes were then brought together into a hierarchy as
themes and subthemes. Once a consensus was reached with
regard to an interpretation of the data and a thematic
framework agreed, the remaining 26 transcripts were analysed
by one researcher. The coding was ‘interpretive’, although
the analysis did not occur in a vacuum
(Braun and Clarke
and was, to a lesser or greater extent, influenced by a
priori knowledge from published literature and conducting
The emergent higher-order themes from the analysis
(employability and education; access to information and
support; reduced social isolation; health and wellbeing; and
managing day-to-day) are used in this paper as subheadings
to present the findings. Quotes from the interviews are
presented to highlight relevant points. Quotes are attributed to
individuals by a unique identifier consisting of two letters
and a number. The letters denote whether the interviewee
was an adult with HFASD (SU), a family member (FA), a
mentor (ME) or professional (ST).
Leeds Beckett University provided ethical approval for
the work. Given the potential vulnerability of adults with
HFASD in research, additional effort was made to ensure an
accessible research design
(Rios et al. 2016)
participants were given an accessible written information sheet
explaining the purpose of the project and their potential role.
The service manager, as a trusted ally, also briefly spoke to
adults with HFASD who expressed an interest in taking part
to ensure they understood what was being asked of them.
Moreover, the research was underpinned by a
participatory approach. A steering group made up of the research
team, service employees, and adults with HFASD guided
the scope of the research and fed into the design of research
instruments. The interviews with adults with HFASD were
conducted by a researcher with experience of carrying out
research with adults with ASD.
The service was overwhelming described in positive terms
and thought to benefit adults with HFASD, family members,
and professionals and other services in the city. Engaging
with the service was thought to lead to positive outcomes
with regard to employability, education, volunteering, and
access to support, social isolation, health and wellbeing,
managing day-to-day, access to information,
communication skills, and autism awareness. Being free at the point
of use and aimed at people with little or no funded support,
the service was thought to be “plugging a gap” (SU13) for
adults with HFASD who had limited access to other forms of
support. If the service were not available, it was thought that
adults with HFASD and their families would be worse off.
[the service] is vital to so many people, be they autistic
people or carers or even partners because it provides
such an important service (SU14)
These institutions are absolutely vital if they’re
serious about helping people, and helping them to live
longer and helping them avoid the pitfalls of life that
one would normally go down without all these kind of
safety nets (SU9)
Employability, Education and Volunteering
The service was thought to have positively affected the
employment issues of adults with HFASD who used the
service and helped them improve access to education and
volunteering. Employability social skills training sessions
and an employment peer-support group enabled adults
with HFASD to feel more confident to enter the workplace.
Adults with HFASD had been supported to create new, or
improve existing, CVs or employment profiles.
The service facilitated opportunities to gain direct
experience. A number of interviewees described progressing
through different roles within the service—from service
users to peer support volunteer—which had benefited their
employability. Four adults with HFASD were currently
employed within the organisation overseeing the service,
having started out as volunteers.
The service also facilitated adults with HFASD to
improve access to education by providing opportunities
to consider and discuss their options in an appropriate
setting. One adult with HFASD said: “if I hadn’t of been
coming here…I wouldn’t of thought of going back to college”
Access to Information and Support
A significant outcome of the service was in enabling adults
with HFASD, family members, and professionals to improve
access to information and appropriate support. Interviewees
described being able to gain information about a plethora of
topics (i.e. housing, health, parental rights, debt
management, and employment) that otherwise would not have been
If it wasn’t for this place I wouldn’t have known I could
do a parenting plan to set ground rules on seeing my
boy…it’s been a great help that way (SU8)
The significance of making information more accessible
was in empowering service users to take appropriate action
to address a problem or need. A family member, for
example, described getting information about how her son with
HFASD could transfer jobs, making the family’s impending
relocation more manageable for all involved.
Those spoken to described gaining support with regard to
accessing an official autism diagnosis, employment, housing,
social skills training, access to computers, and legal support.
I’d probably still be struggling on how to fill in this
application form because no one would have time to
sit with me and explain things in more detail (SU8)
I’ve been able to speak to people who know about that
stuff in a confidential and supportive environment…
I’ve got the support I need (SU14)
Whilst the service primarily sought to signpost service
users on to other sources of support and information, staff
and volunteers also provide some short-term, direct support
to users (i.e. during times of crisis) and were available to
advocate on behalf of users in order for them to “get their
voices heard” (SU13).
Reduced Social Isolation
The social aspects of the service were substantial and
resulted in users feeling less socially isolated. For many
service users, the service provided a unique opportunity to
meet and interact with “likeminded people” (SU5).
I find it very easy to get on with other autistic people… it must simply be the case that are brains are so similar that we’re on the same wave length…I can walk in here
and I wouldn’t know they were autistic and start
chatting…maybe that’s something you can’t do here with
regular neuro-typicals (SU9)
I didn’t really have much by way of a social life or
many other autistic people…to share my experiences
with but since I’ve been involved in Leeds Autism
AIM things have really picked up for me…I’ve been
able to make more friends who are autistic…I actually
have a social life (SU14)
The drop-in hubs provided opportunities for new social
and, in one instance, romantic relationships for adults with
HFASD. The social impact extended beyond the drop-in
hub buildings as adults with HFASD described meeting up
with new made friends outside of the drop-in hubs and of
continuing relationships online. The service also supported
users to develop their communication skills and the
confidence to speak to others outside of the drop-in hubs or
Since I’ve been involved in [the service] I’ve found
I’ve become better at talking to people, become a
better listener (SU14)
Moreover, mentoring provided opportunities for more
indepth, one-to-one interaction with a trusted person.
Opportunities for volunteering within the service (i.e. as a hub
volunteer or peer-mentor) provided occasions to develop
more formal communication skills.
As well as facilitating new social relationships, the
service was also thought to help maintain existing relationships.
For example, one adult with HFASD suggested support from
the service had “saved my marriage” (SU4). Another adult
with HFASD had been able to maintain his relationship
with his mother with whom he lived because of the support
received from the service.
Health and Wellbeing
Interviewees thought the service positively affected their
health and wellbeing; to be “less miserable” and more
confident (SU14). In the most extreme, the service was thought to
have prevented adults with FHASD from attempting suicide
or harming themselves and others.
It’s easy to say ‘I don’t know whether I’d be here now’,
but I don’t…thinking about killing myself is a constant
Interviewees described not having another outlet to
discuss personal issues and ‘bottling up’ things that were
causing them problems. The service, via the mentoring and
dropin hubs, provided opportunities to air feelings and concerns
in a confidential environment; “somewhere to get it off your
head” (SU1). Adults with HFASD reported that this helped
reduce their anxieties and associated negative behaviours,
such as aggression and/or self-harm.
Usually I don’t talk about personal things in my life
that go wrong but I’m able to here, I’m happy to…I
wouldn’t have had that without this place (SU5)
Another example of how the service has led to improved
health outcomes is supporting adults with HFASD to
develop hospital passports and health action plans.
The positive health and wellbeing benefits of the service
also extended to the families of adults with HFASD who use
the service. The service provided support directly to family
members, whilst the indirect effect of adults with HFASD
attending the drop-in hub or mentoring was to provide
respite to family members.
I get three hours to myself a week. So having that extra
support gives me the help I need so that I can focus
on me and get my health back to where it was (FA1)
Without the autism hub to be there as that extra
support…I think my mother and I would be very ill by
now…it just eases the pressure tremendously on her
because if there’s an issue I can come here and she’s
not having to deal with it in such a way that she’s being
Whilst adults with HFASD may struggle with “everyday
things that normal people take for granted” (SU4), such as
paying bills and debt management, travelling around the city,
being in social situations, and accessing support, the service
appeared to have a positive impact on their ability to cope
with such activities. The service was thought to help service
users “[live] less chaotic lives” (SU13).
To go into a city centre on a hot day was unimagi
nable to me. Now I can do it—I may have to put my
headphones on and get my head down and just walk to
where I need to go—but I can if I’m with someone just
stroll through and relax a bit more (SU8).
As well as supporting service users to effectively
manage specific tasks, the service provided adults with HFASD
with more general support about managing their autism. In
reference to how they felt when their autism ‘flares up’, one
interviewee said the service had helped them to develop
strategies to “contain that explosion” (SU4), preventing or
lessening some of the negative consequences they would
have previously faced.
Through peer mentoring and interaction at the drop-in
hubs, the service supported adults with HFASD to
understand—and, in some cases, come to terms with—their
conditions better. This enabled them to be more tolerant of
themselves and other people with and without ASD.
Members of staff like **** might signpost [service
users] to me and then I can talk to them and share my
experience and show them that there are a lot of
positives about being autistic and it is possible for us to
achieve something (SU13)
The service also influenced autism awareness within other
organisations by providing autism awareness training and
information to other organisations. Specifically, the service
raised awareness around the needs of adults with HFASD as
opposed to children and their families.
That low-level, preventative support is needed for adults with
high functioning autism spectrum disorder (HFASD) at risk
of experiencing poor physical and mental health,
employment, and social outcomes is championed in both academic
literature and policy. This paper has explored the efficacy of
a low-level support service for adults with HFASD, adding
to a relatively small pool of existing research.
Providing advocacy, information, and mentoring was
overwhelmingly described in positive terms and thought to
benefit adults with HFASD, family members, and
professionals and other services in the city. The employability,
education, volunteering, accessing support and
information, social isolation, health and wellbeing, and managing
day-to-day of adults with HFASD were all thought to be
improved through engaging with the service. At the drop-in
hubs, adults with HFASD had an opportunity to feel
welcome and understood, to socialise with peers, and to receive
help and support that may not otherwise be accessible. The
mentoring service provided a source of social interaction
as well as helping mentees achieve specific outcomes, such
as increased confidence and employability. The
information and signposting service enabled service users to access
appropriate support in a friendly and low stress
environment. The service was “plugging a gap” (SU13) for adults
with HFASD and their families with limited or no access to
other forms of support and who would be worse off if the
service was not available. In this sense, the service provided
appropriate support to adults with HFASD, their families
and services in the city to potentially mitigated against many
of the poor health and wellbeing and social outcomes that
adults with HFASD risk.
Adults with HFASD face many barriers to accessing
appropriate services; navigating health and care systems can
be challenging and hostile for adults with HFASD
et al. 2016)
. On the one hand, adults with HFASD can be
at risk of not meeting the eligibility criteria for specialist
(Berney 2007; Lake et al. 2014; Ward and
. That they may also not be the right age
and Russell 2007; Bruder et al. 2012; Shattuck et al. 2011;
Turcotte et al. 2016)
or have a late/missed ASD diagnosis
(García-Villamisar and Dattilo 2010; Mawhood and
Howlin 1999; Nicolaidis et al. 2013)
can be further barriers to
accessing support from ‘autism’ services. On the other hand,
the specific needs of adults with HFASD may not be
recognised or catered for within ‘mainstream’ services
(Lake et al.
2014; Ward and Russell 2007; The National Autistic Society
. This includes the location of services in off-putting or
inaccessible locations for people with HFASD (i.e. in town
centres), and staff and service procedures not being
accommodating to the needs of people with HFASD. A number
of the adults with ASD involved in this research described
being dissatisfied with the service they had received from,
for example, mainstream housing, employment, or mental
The low-level support provided by the service appears
to have a role in supporting adults with HFASD to
overcome some of these barriers. For example, whilst adults with
HFASD may have difficulties approaching ‘mainstream’
services independently, housing services within the
dropin hubs provided an accessible opportunity to engage with
these services and to speak in confidence to professionals
in a safe/secure environment. The signposting and
information element of the service made the health and social care
systems easier to navigate, enabling service users to access
health and social care as needed. Likewise, the advocacy
service supported adults to engage with services where
they may have previously had negative experiences. That
the service is free at the point of use and has no eligibility
criteria based on age or diagnosis appears significant for
those adults with HFASD and their families with little or
no other funded support
(Vogan et al. 2016)
. In particular,
the service is an opportunity for individuals who did not
receive an ASD diagnosis until later in life to begin to access
Whilst the service was thought to improve the lives of
adults with HFASD and their families, we cannot say that
service users’ issues were ever completely resolved. This
is not a criticism of the service per se. Firstly, the focus
of the service was not on achieving specific outcomes with
regard to, for example, employment or improved health—
although these improvements are welcome. Rather,
recognising that adults with HFASD are likely to experience
complex and interrelated issues in their lives
(Marriage et al.
2009; Gotham et al. 2015; Lake et al. 2014)
, the service
aimed to “provide a little bit of help for everything” (SU8).
Secondly, whilst the service provided some direct support
to adults with FHASD, their families, and professionals in
the city, the principal purpose was to provide advice,
information and signposting. The service is comparable to the
autism ‘one-stop-shops’ in Edinburgh and Glasgow
et al. 2013; National Centre for Autism Studies 2006, 2007)
in providing “a place, person or team, that can provide the
definitive repository of information about autism support
and autism services within a defined area”. Like the two sites
in Scotland, the strength of the service here is as a gateway
to further support. The service should be viewed, to
paraphrase Tait et al. (2013), as a ‘first stop shop’ that does not
principally house services but works to increase the
capacity of other services and service users. However, given the
ongoing austerity politics in the UK and the well-publicised
associated reduction in capacity across the broader statutory
and voluntary health and social care sectors, the extent to
which the Leeds AIM service is able to fulfil its function to
effectively direct users to further appropriate support is, at
best, unknown, and, at worst, diminished.
Limitations and Future Research
Limitations in the research design mean that the findings,
whilst still valid and in line with previous research, may not
be generalizable. Firstly, data collected concerns only one
service, in one city in England, and so the results may not be
representative of other settings within different social,
political, cultural, or economic contexts. Whilst the sample was
sufficient to assess broad themes relating to the impact of the
service, it would be useful to explore the impact for specific
groups. For example, the sample was limited in terms of
ethnic diversity and it was not clear at what age all participants
received an ASD diagnosis. Secondly, relying on qualitative
data, individuals’ perceived experience has been placed at
the centre of the research. Some quantitative data
concerning the efficacy of the service was planned to be extracted
from feedback forms routinely administered to service users,
including adults with HFASD, family members, and
professionals, as part of the service. However, only 28 feedback
forms were available for use in this research. Given that the
small sample prevented reliable inferential statistics being
produced, this data has been omitted. Thirdly, the data was
collected at one point in time rather than longitudinally to
Future research should not only look to address the
identified limitations of this research but the broader deficits in
the literature. That adults with HFASD can achieve positive
outcomes through low-level support has been consistently
demonstrated using qualitative data. Quantitative measures
that policy makers and commissioners are more likely to
be receptive to need to be taken
(Lorenc et al. 2016)
includes longitudinal measures of individual outcomes
and broader impacts of low-level interventions on health
and social care. Providing insight into the economic costs
and dividends of low-level support through, for example,
social return on investment methodologies, are paramount,
particularly in the context of austerity. Given the negative
association between engaging with support services and
ethnicity and socio-economic status
(Shattuck et al. 2011)
future research should also look to include more
representative samples. If certain demographic groups are found to
not engage with low-level support services than the
question as to ‘why?’ needs to be answered. Moreover, given the
apparent efficacy of the service on supporting people who
did not receive an ASD diagnosis until adulthood, it would
be beneficial to further explore these peoples’ experiences
An ongoing failure to address the health and social care
needs of adults with high functioning autism spectrum
disorder (HFASD) is likely to result in greater unmet health
needs, higher use of emergency departments at times of
crisis, and lower utilisation of some preventative services
(Nicolaidis et al. 2013; Vogan et al. 2016)
. Without external
services, the burden of support around adults with HFASD
typically falls to families (where available), which can have
negative consequences for those individuals (Engström et al.
2003). Despite the policy emphasis, there is concern about
whether appropriate preventative services are accessible
(Lorenc et al. 2016)
. This paper has explored the efficacy
of an advocacy, information and mentoring service, adding
to the existing literature in support of low-level
interventions for adults with HFASD; there are strong indicators
that the service is leading to a number of positive outcomes
for adults with HFASD with little or no funded support,
their families, and associated services in the city. The service
delivers an ‘autism friendly’ environment where adults with
HFASD are empowered to take control of the support they
need. Evaluating the preventative effect of the service with
regard to reducing demand on health and social care
services is beyond the remit of this paper, although the service
did support users to not fall under the radar or between the
gaps of support structures
(Baldwin and Costley 2016; The
National Autistic Society 2001)
. Whilst such interventions
would appear useful in fulfilling UK government aspirations
of providing good quality health and social care for all adults
with ASD, their effectiveness in the context of ongoing
austerity is, at best, unknown, and, at worse, diminished.
Acknowledgments The authors wish to thank Wendy Cork from
Leeds Autism AIM for her support during the research process. The
work was funded by Advonet, the parent organisation of Leeds Autism
AIM. Whilst this may be a source of bias, the researchers are
independent of the organisation and conducted the work independently,
presenting an accurate and balanced account of the findings. The findings of
this paper where produced as a report for Advonet in the first instance.
Author Contributions KS conceived the study, designed the data
collection procedures, took part in data collection and analysis, and
led the write up. OR took part in the data collection, led the analysis
of qualitative data, and contributed in drafting outputs.
Compliance with Ethical Standards
Conflict of interest The authors declare no conflict of interest.
Ethical Approval Ethical approval for this research was granted by
Leeds Beckett University’s ethics committee. All procedures performed
in studies involving human participants were in accordance with the
ethical standards of the institutional and/or national research
committee and with the 1964 Helsinki declaration and its later amendments
or comparable ethical standards.
Informed Consent Informed consent was obtained from all
individual participants included in the study.
Open Access This article is distributed under the terms of the
Creative Commons Attribution 4.0 International License
(http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use,
distribution, and reproduction in any medium, provided you give
appropriate credit to the original author(s) and the source, provide a link to
the Creative Commons license, and indicate if changes were made.
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