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What should autism research focus upon? Community views and priorities from the United Kingdom

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  • Institute of Psychiatry, Psychology & Neuroscience, King's College London
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What should autism research focus upon? Community views and priorities from the United Kingdom

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The rise in the measured prevalence of autism has been accompanied by much new research and research investment internationally. This study sought to establish whether the pattern of current UK autism research funding maps on to the concerns of the autism community. Interviews and focus groups were conducted with autistic adults, family members, practitioners and researchers to identify their priorities for research. We also captured the views of a large number of stakeholders via an online survey. There was a clear disparity between the United Kingdom's pattern of funding for autism research and the priorities articulated by the majority of participants. There was general consensus that future priorities for autism research should lie in those areas that make a difference to people's day-to-day lives. There needs to be greater involvement of the autism community both in priority setting and in research more broadly to ensure that resources reach where they are most needed and can make the most impact.
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Autism
2014, Vol. 18(7) 756 –770
© The Author(s) 2014
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DOI: 10.1177/1362361314529627
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Introduction
The last few decades have witnessed a dramatic increase in the
recorded prevalence of autism. Recent figures estimate that
approximately 1% of the population in the United Kingdom
(UK) has an autism spectrum condition (Baird et al., 2006;
Brugha et al., 2011) – more than a 20-fold increase from the
results of the first epidemiological study (Lotter, 1966) – and
such estimates are similar in other parts of the world (e.g.
Elsabbagh et al., 2012). This significant rise in recorded preva-
lence means that the need for a better understanding of autism
and for evidence-based practice has never been greater.
The response to this ever-growing need, particularly in
the United States (US), has been unprecedented (Dawson,
2013). In the US, the Combating Autism Act authorised
US$950 million to autism research over 5 years and pro-
vided grant programmes for states to develop autism
screening, early diagnosis and intervention programmes for
children (Insel and Daniels, 2011; Singh et al., 2009). In
2010 alone, federal and private foundation funding for
autism research in the US exceeded US$400 million (Office
of Autism Research Coordination, National Institute of
Mental Health, on behalf of the Interagency Autism
Coordinating Committee (IACC), 2012).
In the UK, public and private funding organisations
invested almost £21 million into autism research between
2007 and 2011 (Pellicano et al., 2013). Although this fig-
ure is well below that of the US, even when adjusted for
population size, it nevertheless represents a significant
increase in investment relative to the findings of a review
of UK funding conducted 10 years earlier (Charman and
Clare, 2004).
The expressed hope is that the surge in investment in
autism research might lead to translational benefits that
will, in time, enhance the life chances of autistic1 people
and their families (Insel and Daniels, 2011). Yet, it can
only achieve this goal if such research is directed towards
those areas where it is most needed and can make the
most impact. This issue raises two key questions: What is
the current focus of autism research? And is it commen-
surate with the needs and priorities of the autism
What should autism research focus
upon? Community views and priorities
from the United Kingdom
Elizabeth Pellicano1,2, Adam Dinsmore1,3 and Tony Charman4
Abstract
The rise in the measured prevalence of autism has been accompanied by much new research and research investment
internationally. This study sought to establish whether the pattern of current UK autism research funding maps on to the
concerns of the autism community. Interviews and focus groups were conducted with autistic adults, family members,
practitioners and researchers to identify their priorities for research. We also captured the views of a large number
of stakeholders via an online survey. There was a clear disparity between the United Kingdom’s pattern of funding for
autism research and the priorities articulated by the majority of participants. There was general consensus that future
priorities for autism research should lie in those areas that make a difference to people’s day-to-day lives. There needs
to be greater involvement of the autism community both in priority setting and in research more broadly to ensure that
resources reach where they are most needed and can make the most impact.
Keywords
autism community, autism research, decision-making, priority setting
1Institute of Education, University of London, UK
2University of Western Australia, Australia
3Wellcome Trust, London, UK
4King’s College London, Institute of Psychiatry, UK
Corresponding author:
Liz Pellicano, Centre for Research in Autism and Education (CRAE),
Department of Psychology and Human Development, Institute of
Education, University of London, 25 Woburn Square, London WC1H
0AA, UK.
Email: l.pellicano@ioe.ac.uk
529627AUT0010.1177/1362361314529627Autism X(X)Pellicano et al.
research-article2014
Special Issue Article
Pellicano et al. 757
communities it serves? Much is now known about the
first of these questions, at least in the UK and the US.
Comparatively little is understood, however, about the
second of these questions, that is, about what type of
research autistic people, their parents and carers and
practitioners actually want and value, and whether the
current funding landscape in the UK matches up to their
stated priorities.
This article begins by providing an overview of what
type of research is being funded. We then report the find-
ings of a study that sought the views of a wide range of
individuals from the UK autism community2 regarding
their priorities for future research.
Current funding landscape for autism research
Analysis of the funding priorities of government and non-
government organisations in the past two decades shows
that the majority of funded projects focus on ‘basic science’
– on neural and cognitive systems, genetics and other risk
factors (Charman and Clare, 2004; Krahn and Fenton, 2012;
Office of Autism Research Coordination, National Institute
of Mental Health, on behalf of the IACC, 2012; Singh et al.,
2009). This dominance in basic science may reflect the fact
that relatively little is known about autism – its causes, its
correlates or its consequences. While Singh et al.’s exami-
nation of US-funded research between 1997 and 2006 found
an increase in research that aims to ‘translate’ basic science
discoveries into clinical practice, including especially the
pursuit of novel therapeutic interventions, their analysis
showed that the amount of research funding dedicated to
improving the immediate circumstances in which autistic
people find themselves remained very low, with few studies
being funded to understand and promote family functioning
and services – a pattern that has been heavily criticised by
some members of the autism community (e.g. Milton and
Bracher, 2013; Ne’eman, 2011).
Recent efforts to guide the federal research agenda in
the US have actively tried to address this imbalance in
research. The IACC, which was established through The
Children’s Health Act of 2000, is responsible for establish-
ing priorities, communicating trends, monitoring autism-
related activities and making recommendations for autism
research funding to the US federal government. Following
an extensive consultation process with federal agencies,
scientific experts and public stakeholders, IACC published
a Strategic Plan in 2009, which sought to ‘focus, coordi-
nate, and accelerate high quality research and scientific
discovery in partnership with stakeholders to answer
urgent questions and needs of people on the autism spec-
trum and their families’ (IACC, 2009: 3). From the consul-
tation, IACC identified six critical research questions in
the areas of (1) diagnosis, (2) underlying biology, (3)
genetic and environmental risk factors, (4) treatments and
interventions, (5) services and implementation science and
(6) lifespan services and supports. A revised plan has since
included a seventh critical question on surveillance and
infrastructure (IACC, 2010).
The 2008 US funding portfolio analysis (IACC, 2010)
showed that the largest portion of funding was targeted
towards identifying risk factors for autism (37%), with 24%
devoted to treatments and interventions, 18% on the underly-
ing biology and 13% on diagnosis. Research on lifespan
issues and services were the least well-funded research areas
(5% and 1%, respectively). A subsequent analysis on 2010
funding portfolio (Office of Autism Research Coordination,
National Institute of Mental Health, on behalf of the IACC,
2012) reported significant change to the pattern of US fund-
ing activity. Autism research funding in 2010 was more
evenly distributed among the seven critical research areas
than in previous years, a pattern that was attributed to better
reporting of autism-related funded projects and to the influx
of funds from the American Recovery and Reinvestment Act
(ARRA), which allowed additional funding to be applied to
the perceived gaps in autism research as specified in the
IACC Strategic Plan. Overall, the pattern is suggestive of a
diverse portfolio of autism research.
The same cannot be said, however, for the current fund-
ing landscape in the UK. Analysis of 106 funding awards
made between 2007 and 2011 showed that projects in the
areas of biology, brain and cognition far outstripped all other
areas of autism research – both in terms of number of awards
made and money spent (Pellicano et al., 2013). More than
half (56%) of the UK grant expenditure went towards such
grants, totalling £11.6 million spread across 60 research pro-
jects (see Figure 1). Comparatively little research in the UK
during this period was targeted towards identifying effective
services for autistic people and their families (5% of fund-
ing), on diagnosis (5%) and interventions (18%) or on soci-
etal issues (1%). These figures suggest that research funding
in the UK is much less evenly distributed across the differ-
ent research areas than in the US.
Priority setting in research
Unlike in the US, for UK autism research, there is cur-
rently no high-level systematic process for identifying and
coordinating autism research across organisations to
ensure that funds are directed to areas of greatest need.
How, then, are research priorities determined?
One approach to priority setting often adopted by fund-
ing organisations is a so-called technical approach, incor-
porating quantifiable (epidemiologically derived)
measures such as prevalence, morbidity and costs.
Estimates of the ‘costs of autism’ have been reported
(Knapp et al., 2009; Wang and Leslie, 2010) but are not
uncontroversial. Defining the value of a human life in
monetary terms is obviously far from straightforward
(Gross et al., 1999), often involving multiple and value-
laden assumptions.
758 Autism 18(7)
The second approach to priority setting, which is said to
overcome some of the challenges inherent in the technical
approach, is an interpretive approach. Such approaches
actively seek out the views of ‘consumers’ or stakeholders
to make informed decisions about how resources are
invested to address societal needs and to steer researchers
towards priority topics (Lenaway et al., 2006).
Priority-setting exercises involving key stakeholders
are increasingly performed in health-related research (e.g.
Lloyd and White, 2011; Oliver et al., 2004), yet rarely
have they been conducted in the field of autism.
Consequently, for the most part, research priorities for UK
autism research are set within individual organisations and
are most likely influenced by researchers’ interests,
funders’ interests and the amount of research capacity in a
particular area rather than by the interests of other key
stakeholders, including autistic people, their family mem-
bers and the practitioners who work with them.
The current study
Without a dialogue about research priorities between
researchers and the UK autism community, there is a risk
that the research conducted will fail to have its intended
effects, that is, to make a difference to the lives of those
affected by autism. The aim of this study therefore was to
ascertain the UK autism community’s views and priorities
for autism research.
To address this aim, we used a combination of qualita-
tive and quantitative methods with four main groups of
stakeholders, including autistic adults, their family mem-
bers, practitioners and researchers. Focus groups and
semi-structured interviews were conducted both to elicit
in-depth discussion of priorities with key stakeholders
and to inform the design of a large-scale online survey.
Embedded within the focus groups, interviews and online
survey were the results of a systematic review of UK
funding for autism research over the past 5 years (2007–
2011) (Pellicano et al., 2013; Figure 1). These results pro-
vided participants with up-to-date knowledge of the state
of current UK autism research (1) to gain their views and
perspectives on the pattern of UK funding activity and (2)
to make informed decisions about priorities for future
research.
We also compared researchers’ and non-researchers’
(autistic adults, family members, practitioners) views on
current autism research and their interests and priorities for
future research to determine the extent to which different
stakeholder groups share research priorities.
Method
Participants
In-depth focus groups and interviews. We conducted 11
focus groups and 10 interviews with 72 people, who were
recruited via community and personal contacts of the
research team. There were 14 autistic adults (2 female), 27
parents of autistic children (all mothers), 20 practitioners
(18 female; 2 speech and language therapists; 16 teachers,
2 educational psychologists) and 11 autism researchers (5
female; 6 early career researchers) representing 10 UK
universities. The participating mothers had children who
ranged in age from 5 to 19 years and also ranged in ability
from those who had limited spoken language (n = 10) to
those who they considered to be cognitively able or ‘high
functioning’ (n = 27).
Online survey. A total of 1929 people completed the
online survey. Community members were recruited via
community contacts, including autistic organisations,
parent advocacy groups and practitioner networks in
and around the UK. We used a convenience sample
method – snowball sampling – that relied on referral
from initial participants (through word-of-mouth, email,
social media) to generate additional participants. We
recruited UK autism researchers by extracting the con-
tact details of those who had published a scholarly arti-
cle on autism between 2011 and 2012 (n = 334)
according to online academic databases and inviting
them to participate.
56%
18%
15%
5%
5%
1%
Biology, Brain & Cognion
Treatments & Intervenons
Causes
Diagnosis, Symptoms & Behaviour
Services
Societal Issues
Figure 1. Pie chart showing the breakdown of UK autism
research grant funding between 2007 and 2011 (see Pellicano
etal., 2013, for details; also see Office of Autism Research
Coordination, National Institute of Mental Health, on behalf
of the IACC, 2012). Diagnosis, symptoms and behaviour
included projects on diagnostic and screening tools, early
signs and biomarkers, subtypes, symptomatology and
epidemiology. Biology, brain and cognition included projects
on cognition, sensory and motor function, computational
science, co-occurring conditions, longitudinal studies,
immune/metabolic/molecular pathways, neural systems
and neuropathology. Causes included projects on genetic
risk factors, environmental risk factors and epigenetics.
Treatments and interventions included behavioural and
developmental, complementary and alternative, educational,
medical, occupational and technology-based interventions and
supports. Services included projects on community inclusion
programmes, effective service delivery, family well-being
and safety, practitioner training and service utilisation and
access. Societal issues included projects on the economics of
autism, research policy, social, ethical and legal issues, and
biographical, sociological and ethnographical work.
Pellicano et al. 759
A total of 305 individuals were excluded from analysis
either because (1) they were not residing in the UK or (2)
they did not complete all survey items. Of the 1624
respondents initially included in the analysis, 122 identi-
fied themselves as autistic; 825 as a parent or carer of a
child with autism; 24 as a son daughter or sibling of an
individual with autism; 426 as a practitioner working with
autistic people (as a teacher, speech and language thera-
pist, support worker, clinical psychologist, paediatrician,
general practitioner, psychiatrist) and 120 as an autism
researcher. A further 107 respondents labelled themselves
as ‘other’ (e.g. student, ‘interested in autism’ etc.). Due to
the heterogeneity in the background of this group and the
fact that their interest in autism research was not speci-
fied, these respondents were excluded from subsequent
analyses.
For parents and carers, the mean age of their child with
autism was 13.4 years (standard deviation (SD) = 9.0;
range = 2–57; 142 females), and, for sons, daughters or
siblings, the mean age of their autistic family member was
27.1 years (SD = 16.3; range = 4–65; 6 females). Given the
small number of sons, daughters or siblings of an autistic
individual, they were combined with parents/carers to
form an ‘immediate family member’ group. Analysis
therefore focused upon 1517 participants divided into four
key stakeholder groups (see Table 1).
Procedure
Focus groups/interviews. The focus groups and semi-struc-
tured interviews were designed to gain an understanding of
(1) participants’ knowledge of current UK autism research,
(2) their views on the pattern of UK funding and (3) their
priorities for future UK autism research.
Discussion first centred on participants’ views on the
current agenda for UK autism research, particularly with
regard to which areas of autism research attracted the most
funding. Towards the end of this discussion, we presented
participants with the provisional findings (in graphical
form) of a systematic review of the funding portfolios of
20 UK government and non-government organisations
between 2007 and 2011 (Pellicano et al., 2013) and asked
for their views on the current research effort (see Tallon
et al., 2000, for similar methodology). Each funding award
was classified according to a protocol adapted from the
2010 IACC ASD Research Portfolio Analysis Report
(Office of Autism Research Coordination, National
Institute of Mental Health, on behalf of the IACC, 2012)
and included six overarching research categories: (1) diag-
nosis, symptoms and behaviour; (2) biology, brain and
cognition; (3) causes; (4) treatments and interventions; (5)
services and (6) societal issues (see Figure 1).
Once participants had an opportunity to consider the
findings, we then asked them to reflect on whether UK
autism research funding currently matched up to their
stated priorities, and those of the autism community, and to
highlight any perceived gaps in research.
All focus groups were conducted face-to-face in a loca-
tion convenient for participants. Each group was kept
exclusive (e.g. researchers only, autistic adults only) to
avoid potential disagreement between groups limiting the
information we gained. They were led by a facilitator,
who, at key points during the discussion, fed the main
points back to the group to confirm the interpretation of
comments and to seek agreement on the main themes of
the discussion. Notably, the aim was not to reach a general
consensus about the themes raised in the groups. A note-
taker was also present but did not contribute to the discus-
sion. The length of focus groups ranged from 44 to 124
min (M = 93 min).
For interviews, participants were given the option of a
face-to-face discussion (n = 4) or one conducted over
Skype (n = 2) or telephone (n = 4). Interviews lasted
between 32 and 104 min (M = 51 min). Where possible,
focus groups/interviews were audiotaped and subsequently
transcribed. The resulting data were analysed using the-
matic analysis (Braun and Clarke, 2006).
Online survey. The online survey aimed to elicit both quan-
titative and qualitative responses from large numbers of
the UK’s autism community regarding their views on
autism research. The items differed slightly between stake-
holder groups (e.g. family members were also asked to
provide details of their autistic relative), but, for the most
Table 1. Descriptives for respondents to the online survey for each of the four key stakeholder groups (total n = 1517).
Autistic person
(n = 122)
Immediate family
member (n = 849)
Professional
(n = 426)
Researcher
(n = 120)
Chronological age
M (SD) 39.4 (12.9) 45.1 (9.8) 42.2 (11.8) 40.6 (13.8)
Range 18–72 18–83 21–70 22–87
Gender
Female 56 765 350 81
Male 60 83 74 38
Other/would rather not say 6 1 2 1
SD: standard deviation.
760 Autism 18(7)
part, each participant responded to the same set of 11 ques-
tions (available from the authors on request). Like the
focus groups/interviews, the first part of the survey asked
participants a series of background questions followed by
key questions about their priorities for research. Specifi-
cally, we asked participants to rate the importance of 13
research questions (see Table 2) on a 5-point scale (1 =
‘not important at all’; 2 = ‘of little importance’; 3 = ‘mod-
erately important’; 4 = ‘important’; 5 = ‘very important’)
and, subsequently, to state which 3 of the 13 questions
were most important to them. These 13 questions were
derived from the six key research areas (Pellicano et al.,
2013). The order of presentation of the 13 questions was
randomised for each respondent. Participants were also
given the opportunity to specify research questions not
covered by the 13 questions they thought should be inves-
tigated by researchers.
In the second part of the survey, participants were then
shown the findings of the systematic review of UK research
funding for autism research (see Figure 1) and then asked
to rate how satisfied they were with the pattern of UK
funding and the extent to which they felt it represented
their own priorities. Next, there were two ‘open questions’
in which they were given opportunities to provide com-
ments on perceived gaps in the pattern of funding and to
identify ‘the one thing about autism they would like to see
researched in the coming decade’. The final series of ques-
tions related to the degree of engagement in research
between the autism/research communities, the results of
which are reported elsewhere (Pellicano et al. submitted).
The survey took approximately 10–15 min to complete
and was hosted by SurveyMonkey between December
2012 and February 2013. Ethical approval for this study
was granted by the Faculty’s Research Ethics Committee
at the Institute of Education, University of London (FPS
395). All participants gave informed consent prior to
participation.
Results
Focus groups/interviews
Knowledge about current UK autism research. The broad
consensus from all stakeholder groups on current UK
autism research was that the majority of the research is
biomedical in nature (e.g. on ‘causes’, ‘genetic research’,
‘risk factors’, ‘brain scans’ and ‘more on the neurological
side’). One exception to this pattern came from the focus
groups with parents, many of whom believed instead that
current autism research focuses on ‘behaviour, looking at
how the environment affects [autism], and the educational
side of it’, and ‘dietary interventions’, also noting that
‘there needs to be some thought given to risk factors’. The
disparity between parents’ and other stakeholders’ percep-
tions of autism research might be related to differences in
the way that participants accessed information about
autism research. Unlike autistic adults and practitioners,
who noted that they sourced their information from the
Internet, academic papers, professional special interest
groups and research bulletins, parents tended to rely on
word-of-mouth (from other parents), information from
websites and emails from advocacy groups.
There was unanimous agreement from all stakeholder
groups that most research seems to focus upon children,
rather than older adolescents and adults – a view that was
particularly endorsed by autistic adults and researchers.
Indeed, one researcher commented, ‘as far as research is
concerned, it pretends that kids on the spectrum don’t exist
after the age of 7’. Several parents also reported that to
their knowledge the research seemed to focus on more able
or so-called high-functioning individuals and was there-
fore not applicable to their children.
Views on pattern of UK funding. Next, participants were
shown the pattern of current funding for UK autism
research (Figure 1) and asked for their perspectives. With
the exception of one researcher, all stakeholder groups
expressed disappointment with the emphasis on biomedi-
cal research, although researchers did so to a lesser extent.
Some autistic adults noted that the priorities as illustrated
by the pattern of funding represented ‘neurotypical priori-
ties regarding us – not autistic people’s priorities’. Other
stakeholders emphasised that the research bias towards
basic science meant that there was ‘not a lot about what
actually helps’ and that research failed to speak to the real-
ity of their lives in the here-and-now (parent: ‘You know
that’s all researchers are interested in, what causes it, what
causes it? Doesn’t say much for the kids that have already
got it, does it?’). In this regard, one specialist autism prac-
titioner said, ‘If I were a family [with a child with autism],
I would probably be asking questions like “so what?”
What does that mean for us? How does this research
impact on the services that we receive?’
Many people suggested that research funding in the UK
should be more evenly distributed or ‘balanced’ among the
primary research areas. Researchers, too, were aware that
research should be more responsive to the immediate
needs of autistic people and their families, even if this
more applied research was not their area of expertise.
Indeed, one senior autism researcher suggested that per-
haps ‘the pendulum has swung too far’ towards basic
science.
Participants’ priorities for future UK autism research. We
identified one overarching theme from subsequent discus-
sions on people’s priorities for future research. All stake-
holders, especially autistic adults, parents and practitioners,
prioritised research into issues of immediate practical con-
cern. They wanted ‘to see real change and real things hap-
pening’ for themselves, their families and for the people
they work with. This theme was divided into three
Pellicano et al. 761
sub-themes: (1) services and supports, (2) knowledge
about autism and (3) research logistics (see Figure 2).
With regard to sub-theme (1) services and supports, all
stakeholder groups agreed that more research was needed
to identify effective services and supports for autistic peo-
ple and their families. Autistic adults and parents in par-
ticular highlighted the importance of developing skills to
manage in day-to-day life. Autistic adults emphasised
acquiring knowledge about helping people ‘manage them-
selves with whatever difficulties they have’, especially
dealing with sensory difficulties, multi-tasking and anxi-
ety. Parents explained that they wanted research to provide
ways to promote independence and ‘to help children lead,
not even productive, but safe lives’. The precise skills to be
targeted depended on the nature of their child’s autism. For
some parents, whose children had little or no spoken lan-
guage, ‘it is literally about getting up, being able to dress
yourself, you know, wash yourself. It’s not even anything
complicated’. For others, whose children were more able,
they wanted to know ‘how can you get your child on a
train that they’ve never been on by themselves or how can
you do all these things that we do’.
Autistic adults and parents of children with autism
identified employment as a priority area for research.
Several participants noted that the employment figures for
autistic people were very bleak – despite the fact that autis-
tic people can be very productive – and called for ‘more
research into how to get people [with autism] into the
workplace and to keep them there’. Lack of post-diagnos-
tic support was also a common theme for parents and prac-
titioners. Several parents recounted their frustrations with
getting their child a diagnosis and once they had it, ‘it was
out the door and I was on my own’. They called for more
assistance following a diagnosis (‘when you first come in
contact with a professional, they should have that informa-
tion to say, whether it’s look at this website, or meet this
individual, or look at this organisation – at least you’ve got
one place to start, just somewhere to start really’).
All stakeholders prioritised the need for evidence-based
services and interventions. Specific interventions were
rarely specified. Instead, practitioners spoke of the limited
‘knowledge base regarding educating kids on the autism
spectrum’, particularly with regard to models of inclusion
in education. Others felt frustrated by the fact that ‘there
isn’t enough research to show that what we’re doing thera-
peutically or educationally actually works’. Researchers,
too, spoke of the need to ‘bridge the gap in terms of inter-
ventions research’. They commented that it is not enough
to demonstrate that an intervention ‘worked there’ (i.e. in a
country other than the UK) but that evidence is required to
show that ‘it will work here’. They also noted the chal-
lenges inherent in such research – that successful interven-
tion research requires a large investment of time, effort and
funding and sustained engagement with the people
involved, making sure that they stay on board until the
research is complete. Autistic adults, parents and practi-
tioners were especially concerned about the lack of ser-
vices and interventions for adults (‘All the services stop
when you are eighteen, don’t they? Everything stops’).
Despite this stated need, autistic adults nevertheless
warned against interventions that espouse (implicitly or
explicitly) to ‘make people normal’, instead encouraging
‘more mutual understanding’.
Regarding sub-theme (2) knowledge about autism,
autistic adults, parents and practitioners were all concerned
that there is insufficient understanding about
Figure 2. Participants’ priorities for future autism research in the UK: theme and sub-themes.
762 Autism 18(7)
Table 2. Participants’ mean ratings for each of the 13 questions according to stakeholder group (1 = ‘not important at all’; 2 = ‘of little importance’; 3 = ‘moderately important’; 4
= ‘important’; 5 = ‘very important’).
Autistic adults Immediate family
members
Practitioners Researchers Group effect Tukey’s HSD
M (SD) M (SD) M (SD) M (SD) F(3, 1513) pEffect size η2
p
1. How can we better recognise
the signs and symptoms of
autism?
4.28 (0.9) 4.37 (0.8) 4.25 (0.9) 4.07 (0.9) 5.21 0.001 0.01 Family members >
researchers* (p = 0.003)
2. Are there different types of
autism?
3.80 (1.1) 3.8 (1.1) 3.72 (1.0) 3.59 (1.1) 1.33 0.26 0.00
3. How common is autism? 3.37 (1.2) 3.58 (1.0) 3.38 (1.0) 3.27 (1.0) 5.60 0.001 0.01
4. How do autistic people think
and learn?
4.28 (0.9) 4.7 (0.6) 4.69 (0.6) 4.49 (0.8) 17.45 <0.001 0.03 Family members > adults**
5. How are autistic people’s brains
different from the brains of
non-autistic people?
3.87 (1.1) 4.19 (0.9) 4.02 (0.9) 3.78 (1.2) 9.49 <0.001 0.02 Family members >
researchers**; family members
> adults*
6. To what extent is autism caused
by environmental factors?
3.22 (1.3) 3.78 (1.2) 3.66 (1.1) 3.33 (1.2) 11.34 <0.001 0.02 Family members, practitioners
> adults, researchers**
7. To what extent is autism caused
by genetic factors?
3.45 (1.2) 3.71 (1.2) 3.62 (1.0) 3.46 (1.2) 4.36 0.005 0.01
8. What are the best ways to treat
the core symptoms of autism?
3.77 (1.2) 4.53 (0.8) 4.30 (1.0) 4.19 (1.0) 31.02 <0.001 0.06 Family members > adults,
researchers, practitioners**;
practitioners, researchers >
adults**
9. How can public services best
meet the needs of autistic
people?
4.59 (0.7) 4.69 (0.6) 4.64 (0.6) 4.30 (0.9) 13.61 <0.001 0.03 Adults, family members,
practitioners > researchers**
10. What is the place of autistic
people in society today?
4.15 (1.1) 4.23 (1.0) 4.13 (0.9) 3.78 (1.0) 8.40 <0.001 0.02 Family members, practitioners
> researchers**
11. What are the best ways to
improve the life skills of autistic
people?
4.54 (0.8) 4.79 (0.5) 4.75 (0.5) 4.47 (0.7) 19.06 <0.001 0.04 Family members, practitioners
> adults, researchers**
12. What does the future hold for
autistic adults?
4.43 (0.9) 4.66 (0.7) 4.40 (0.8) 4.19 (0.9) 21.32 <0.001 0.04 Family members > adults,
practitioners, researchers**
13. Why do autistic people appear
to be more at risk from some
medical conditions than non-
autistic people?
4.05 (1.0) 4.20 (0.9) 3.90 (0.9) 3.81 (1.0) 14.16 <0.001 0.03 Family members >
practitioners, researchers**
SD: standard deviation; HSD: honest significant difference.
Post hoc tests are only reported if p < 0.01; *p < 0.005; **p < 0.001.
Pellicano et al. 763
autism – including both (1) limited expert knowledge from
practitioners and (2) a lack of accurate public awareness.
Autistic adults and parents in particular recounted negative
encounters with professionals, especially regarding diag-
nosis. Autistic adults reported seeing many professionals
before finally receiving a diagnosis, with many of them
blind to the signs of autism in adults and especially in
women (‘I’ve seen fourteen psychiatrists in the last four
years and thirteen of them didn’t pick this up. Why?
Because there’s no knowledge about this in adults’).
Parents sometimes spoke of the lengthy diagnostic process
but, more often than not, reported feeling left ‘in the dark’
after having received a diagnosis for their child
(‘Paediatricians don’t help. My paediatrician said “I’m
learning from you Mrs X” and she signed me off. You
learn from here’.). Both groups called for more training of
professionals working in health, education and social care.
Autistic adults, parents and practitioners also spoke in
detail about the challenges they face dealing with (often
skewed) public perceptions of autism. Many parents and
practitioners talked of the stereotypes and common per-
ceptions of autism – ‘the MMR, eye contact and Rain
Man’ and ‘we’re all a bit autistic’ – that perpetuate in the
media and in communities (‘the public has a great influ-
ence on society in a whole, so what they see on TV is what
they expect autism to be, but it’s not’). They called for
more efforts to enhance awareness about ‘the other side of
autism’ – the challenges associated with autism – by both
researchers and the public (‘you see on TV a lot if a child
is a savant or amazing at maths or can draw, but you don’t
see children who are severely autistic and how they are
going through daily life and how they are developing as
well. You don’t see research on anything like that’).
Autistic adults also described the challenges dealing with
‘people who aren’t educated about [autism]’ and trying to
fit into a ‘neurotypical world’. One man said, ‘The way to
maintain work and social situations, particularly for those
who are on the spectrum, is obviously to put on this façade
of pretending to be normal. But it’s very tiring and
exhausting’.
On sub-theme (3) research logistics, researchers’ dis-
cussions centred on the practicalities of obtaining research
funding, rather than identifying specific priorities. They all
agreed that the lack of funding for UK autism research
‘makes it hard for British researchers to be competitive’
and that greater investment in UK autism research should
be a priority. Many talked about the strengths of UK autism
research (particularly cognitive research), which they
believed should be maintained. They also expressed the
need for more UK-wide collaborations or consortia as a
means of conducting research on a large scale (with
increased power), of responding flexibly to funding calls
or knowledge gaps and of ensuring that findings are
translated into practice. Early career researchers
cautioned against UK autism research being made up
entirely of consortia, however, which they suggested could
potentially reduce innovation. They also felt that insist-
ence on explicitly translational research by funding bodies
is a hindrance to ‘blue sky’ science, and that funding bod-
ies should be prepared to fund research outside a narrow
biomedical model.
Online survey
Stakeholder priorities: ratings. Table 2 shows descriptive
statistics for respondents’ ratings of the 13 research ques-
tions. There was broad agreement among stakeholders that
all 13 research questions were of value. For each group,
the mode response was either 4 (‘important’) or 5 (‘very
important’) for each question with the exceptions of, ‘how
common is autism?’ for which the mode response across
stakeholder groups was a score of 3 (‘moderately impor-
tant’); ‘to what extent is autism caused by environmental
factors?’ for which the mode response was 2 (‘of little
importance’) for autistic adults and 3 for researchers and
‘to what extent is autism caused by genetic factors?’ for
which the mode response was 3 for autistic adults.
Despite such broad consensus, further analyses on par-
ticipants’ mean ratings (see Table 2) revealed subtle differ-
ences between stakeholder groups, albeit of small effect.
One-way analyses of variances (ANOVAs) with group as a
factor (autistic adults, family members, practitioners,
researchers) revealed significant main effects of group for
all but one research question (‘are there different types of
autism?’). The results of post hoc tests (Tukey’s honest
significant difference (HSD)) are reported in Table 2. Note
that because of the relatively large number of post hoc
comparisons conducted, results are not reported as signifi-
cant unless they reach a p value <0.01.
In general, family members’ ratings were significantly
higher than those of autistic adults, practitioners and
researchers for many research questions. There were, how-
ever, several deviations from this pattern. Autistic adults
rated the question ‘what are the best ways to treat the core
symptoms of autism?’ as less important than all other
stakeholder groups (ps < 0.001). Researchers’ ratings were
significantly lower than those of other stakeholders for two
research questions, ‘How can public services best meet the
needs of autistic people?’ and ‘What is the place of autistic
people in society today?’ (all ps < 0.001).
We then examined which of the 13 questions partici-
pants considered the most important. The top three
responses for each stakeholder group are provided in Table 3.
There was striking convergence across the four groups.
Autistic adults, family members, practitioners and
researchers all prioritised research into (1) improving the
life skills of autistic people and (2) identifying how public
services can best meet the needs of autistic people. The
question, ‘How do autistic people think and learn?’ was
within the top three research questions for family
764 Autism 18(7)
members, practitioners and researchers, while ‘What does
the future hold for autistic adults?’ was autistic adults’
third most frequently endorsed question.
Satisfaction with the pattern of current funding. In the second
part of the survey, participants were asked how satisfied
they were with the pattern of current funding for UK
autism research (see Figure 1). The mode response for all
stakeholder groups was dissatisfied (score of 2). Analysis
of mean ratings showed that researchers’ ratings were sig-
nificantly higher (reflecting greater satisfaction; M = 2.50;
SD = 0.91) than autistic adults (M = 2.11; SD = 0.95) and
family members (M = 2.19; SD = 0.93) (both ps < 0.01)
but not practitioners (M = 2.25; SD = 0.94). When asked to
what extent they thought this pattern mapped on to their
stated priorities, the mode response for autistic adults,
family members and practitioners was ‘not really’ (score
of 4) and for researchers, ‘somewhat’ (score of 3). There
was a main effect of group, F(3, 1512) = 5.24, p = 0.001,
η
p
2= 0.01; researchers’ ratings were significantly lower
(i.e. better alignment with their priorities) (M = 3.39; SD =
0.89) than autistic adults (M = 3.84; SD = 0.94), family
members (M = 3.65; SD = 0.90) and practitioners (M =
3.66; SD = 0.85) (all ps < 0.02).
Open questions. Survey respondents were also asked to
provide details on the one topic of research that they would
like to be researched in the coming decade (total of 1238
responses). A summary of the resulting themes and corre-
sponding quotes is presented in Table 4. There were many
common themes among stakeholders, with respondents
focusing largely on research that would make a difference
to their everyday lives. Among the eight emergent themes
(see Table 4), family members and practitioners stressed
the need to develop effective ways of teaching life skills to
individuals with autism and of promoting independence in
adulthood. There were also calls, particularly from autistic
adults, but also from other community members for
research on services, with many respondents expressing a
general dissatisfaction with the services currently availa-
ble to them. Certain groups nevertheless emphasised dis-
tinct types of services, including the development of
services (1) to support individuals at key transition points,
particularly from secondary school to adult services; (2) to
assist individuals and families post-diagnosis and (3) to
support autistic people into employment (see Table 4).
Family members and practitioners further emphasised
the need for more research on how children and young
people with autism think and learn, which could lead to
better interventions inside and outside the classroom.
Many autistic people, family members and researchers
also called for more research into co-occurring conditions.
Autistic people and researchers wanted better understand-
ing of sensory sensitivities, anxiety and depression, while
family members highlighted the need to understand co-
occurring medical conditions (e.g. gastrointestinal
problems).
All stakeholder groups called for research on under-
standing the place of autistic people in society either with
regard to how ‘neurotypical society’ might change to bet-
ter accommodate autistic people (including celebrating
difference) rather than research targeted towards identify-
ing ‘cures’ or ‘prevention’ of autism or to the need for
research to raise more accurate awareness of autism among
the general populations, especially in public services.
Family members, practitioners and researchers – but
not autistic adults – also prioritised treatments and inter-
ventions for autistic children, young people and adults,
although particular treatments were rarely specified.
Lifespan issues were identified by autistic adults, practi-
tioners and researchers, highlighting the need for more
research on autistic adults, particularly older adults.
Finally, autistic adults, family members and practitioners
identified the lack of knowledge of gender differences in
autism.
Discussion
This study investigated the views and perspectives of the
UK’s autism community on the nature of the research
currently conducted and priorities for future research.
The results from the focus groups/interviews and the
large-scale survey clearly suggest that members of the
UK autism community are generally dissatisfied by the
Table 3. Top three research questions endorsed by each stakeholder group.
Autistic adults (n = 122) Family members (n = 849) Practitioners (n = 426) Researchers (n = 120)
1. How can public services
best meet the needs of
autistic people? (61%)
1. What are the best ways
to improve the life skills of
autistic people? (61%)
1. What are the best ways
to improve the life skills of
autistic people? (48%)
1. What are the best ways
to improve the life skills of
autistic people? (66%)
2. What are the best ways
to improve the life skills of
autistic people? (43%)
2. How can public services
best meet the needs of
autistic people? (43%)
2. How do autistic people
think and learn? (48%)
2. How do autistic people
think and learn? (52%)
3. What does the future hold
for autistic adults? (39%)
3. How do autistic people
think and learn? (35%)
3. How can public services
best meet the needs of
autistic people? (37%)
3. How can public services
best meet the needs of
autistic people? (51%)
Pellicano et al. 765
Table 4. Themes identified from open questions in online survey.
Themes Stakeholder groups Example quotes
Developing life skills Family members; practitioners ‘I want to know how society is going to help them live as
independently as they possibly can’. Parent of twin girls with autism
‘Research needs to be carried out and put into ways to teach
life skills and social rules to create more independence for
adulthood’. Sister of an autistic person
‘How to we support people to achieve independent living in
terms of ensuring they get the right education through school to
reach their full potential; specialist careers advice, support with
life skills’. Professional
‘The most effective ways to educate autistic children and provide
life skills whilst respecting them as individuals’. Professional
Effective services Autistic adults; family members;
practitioners
‘We need to know how to work with the services to make sure
everyone has a chance of having a better life’. Autistic woman
‘Successful employment of people with autism. We have unique
skills which are being wasted. Most of us are desperate to work
but unable to find or retain a job due to the lack of awareness
of colleagues or/and the refusal to make small changes to the
environment’. Autistic man
‘We need to understand the impact on families supporting a child
with autism and how they can be further supported. An educated
and empowered parent actually reduces the need (and then cost)
on public services as they are less likely to need regular ongoing
outside help’. Mother of a young person with autism
‘One of the biggest issues is that you get the diagnosis and as a
parent, you are just left to deal with it’. Parent of adolescent boy
with autism
‘Transition from school to college to higher education and into
employment – how best to support people with autism in these
areas’. Professional
Thinking and
learning
Family members; practitioners ‘I want to understand more about how my child sees the world
so I can better understand his response to it’. Mother of a boy
with autism
‘We must try to understand how the autistic person thinks/
processes the world around them, so we are able to better
understand and support them’. Professional
Place of autistic
people in society
Autistic adults; family members;
practitioners
‘I would like to see work on how society can adapt to
incorporate autistics, rather than autistics having to change to
live in a neurotypically-driven world’. Autistic man
‘The need for social attitudes to change with regards to autism
so that people diagnosed live stable, happy and productive lives’.
Autistic man
‘How can we value, strengthen and celebrate areas of difference
that have a meaningful and positive impact on their lives (and on
others)’. Parent of a child with autism
‘Raising people’s awareness and understanding of autism, which
may help towards better integration within society and that
autistic people have strengths and ways to contribute in positive
ways’. Professional
‘How we can channel the strengths of students with autism to
enable them to lead purposeful, fulfilled lives’. Professional
Co-occurring
conditions
Autistic adults; family members;
researchers
‘We need to know how sensory issues can be mitigated’. Autistic
woman
‘Gut and bowel issues – how to treat them and what causes
them’. Parent of a young person with autism
‘If I had to choose, it would be how to help autistic people deal
with the co-occurring symptoms of other conditions, particularly
anxiety/panic and depression’. Early career researcher
766 Autism 18(7)
lack of breadth in current UK autism research and the
heavy bias towards basic science. Although all four
stakeholder groups valued basic research into genetics
and biological aspects of autism, autistic adults, family
members, practitioners and even researchers, all identi-
fied issues of more immediate concern, including the
management of practical, social and emotional issues, as
a higher priority. These findings suggest that there is a
clear mismatch between what is being researched and the
research that is preferred and prioritised by the UK’s
autism community.
All four groups agreed that the distribution of funding
across the different key research areas needs to be more
balanced than it is currently, with greater investment in
research that assists with the day-to-day living with autism
– for those who are autistic themselves, their family mem-
bers and those who work with them. In particular, they pri-
oritised research that will identify effective public services
and evidence-based interventions, develop programmes to
enhance individuals’ life skills, determine how autistic
people think and learn and understand the place of autistic
people in society. Participants also called for more research
on individuals from across the lifespan, particularly autis-
tic adults and older adults, as well as more research on
girls and women with autism. These priorities should
inform the path of future UK autism research.
It is perhaps not surprising that stakeholders prioritised
those areas of research that have the greatest hope of
enhancing the life chances of autistic people and their fam-
ilies. Autistic people are less likely to have a well-paying
job than non-autistic people; many have fewer social con-
tacts and connections outside their immediate family and
many also struggle with their mental health and material
well-being (e.g. Howlin et al., 2004, 2013; Howlin and
Moss, 2012). Recent public policy and service develop-
ment initiatives in the UK have sought to address the gap
between knowledge and practice. Legislation for England
in 2009 introduced the nation’s first ever disability-spe-
cific law, the Autism Act, which placed a duty on the
Secretary of State for Health to introduce a strategy for
improving outcomes for autistic adults. Similar initiatives
have been forged in Scotland, Wales and Northern Ireland.
The Department of Health’s Adult Autism Strategy was
announced in 2010 and the National Institute for Health
and Care Excellence (NICE) commissioned a suite of
guidelines on the identification, diagnosis and manage-
ment of autism in children, young people and adults
(NICE, 2011, 2012, 2013).
Themes Stakeholder groups Example quotes
Treatments Family members; practitioners;
researchers
‘The benefits of early intervention and ways of maximizing the
effects of specific early interventions’. Parent of a child with autism
‘Effective methods in early intervention, promoting quality
training and meaningful interventions by practitioners’.
Professional
‘Innovative treatments to help adults/young people with Asperger
syndrome – this area is really lacking’. Early career researcher
‘We need application of psychological research to treatment and
education’. Senior researcher
Lifespan issues Autistic adults; practitioners;
researchers
‘Autism in later life, it feels like support drops off once we’re out
of full-time education and we’re left guessing as to the future,
particularly after our parents (eventually) die and we no longer
have their support’. Autistic man
‘It must focus on practical issues around what can be done to
support people with autism and their families at ALL stages of
the life cycle’. Professional
‘We need research on quality of life and needs of grown-ups and
older adults with autism’. Researcher
Gender differences Autistic adults; family members;
practitioners
‘More research into why girls/women slip through the net of
diagnosis so often, leading to problems later in life’. Autistic
woman
‘What are the different experiences of girls/women with ASD?
What are the best approaches for working with girls?’ Parent of a
young person with autism
‘I think the profile of females on the spectrum needs greater
research. Do existing diagnostic measures truly meet their
needs? How can female adults be better supported?’ Professional
ASD: autism spectrum disorder.
Table 4. (Continued)
Pellicano et al. 767
These initiatives could suggest that policymakers are
more alert to the specific concerns and requirements of the
autism community. Yet, the fact that only a minority of UK
research funding is directed towards identifying effective
treatments, interventions and services for autism means
that the evidence base for responding to the needs of autis-
tic people and their families is not as advanced as it could
be. This disconnect should be a concern for those respon-
sible for commissioning local autism services, as well as
autistic people, their families and those working in such
services. In the absence of such research, it is difficult to
make evidence-based decisions related to education, health
and social care, as many of our participants attested.
This pattern is not unique to autism research. There is
substantial evidence of discrepancies between the research
that gets done and the research that stakeholders would
like to see done in other areas of health-related research,
including cancer and dementia (Corner et al., 2007; Law
et al., 2011; Tallon et al., 2000). Nonetheless, it is still
helpful to identify specific underlying reasons for this pat-
tern in autism. One explanation potentially relates to the
relative expertise of autism researchers in the UK. Analysis
of the UK’s research activity between 2007 and 2011
showed that cognition research had the greatest number
and proportion of publications, reflecting the UK’s strength
and leadership in this area (Pellicano et al., 2013). It is pos-
sible that the established expertise in this particular area of
autism research has been to the detriment of investment
and training of researchers in newer, more applied areas. In
order to reduce the gap between knowledge and practice,
considerable efforts might be made by funders to invest in
currently under-researched areas and with under-served
populations.
A second explanation relates to the nature of decision-
making in research. Researchers along with research
organisations, funding agencies and charities make deci-
sions every day regarding which areas are researched.
Autistic people, their family members and even practition-
ers, however, are rarely involved in the decision-making
processes that shape research and its application (though,
see Parsons et al., 2013, for an emergent example). This
situation is unlike research in other health-related areas
(e.g. Chalmers, 2004; Partridge and Scadding, 2004),
where there has been some steps towards reforming clini-
cal research decision-making. One notable example is the
involvement of key stakeholders (patients, carers and cli-
nicians) in setting priorities with policymakers and
research funders regarding the treatment uncertainties in
schizophrenia. On the basis of such a joint priority-setting
exercise, the Health Technology Assessment programme
of the UK’s National Institute for Health Research (NIHR;
INVOLVE: http://www.invo.org.uk) commissioned stud-
ies of 4 of the top 10 schizophrenia research questions
(Lloyd and White, 2011). It is time for UK autism research
to follow suit across all funding organisations (see
Pellicano et al., submitted, for more discussion of engage-
ment in research).
There are some challenges to greater involvement of
the autism community in making decisions about research.
First, one argument is that this very involvement goes
against the grain of the scientific method, with its empha-
sis on impartiality, falsifiability and rigorous independent
assessment. Some might argue that involving autistic peo-
ple in making decisions about research potentially intro-
duces bias or reduces objectivity. This, however, is
unconvincing. Not only does this account unpersuasively
imply that researchers are bias-free (which is not the case;
Moore, 2008), but it also suggests that the only people per-
mitted to shape the ongoing debate about autism research
and to direct the allocation of scarce resources are autism
researchers themselves. Clearly, there are other groups
who have an interest in the ‘what’ and the ‘how’ of autism
research and they need to be involved in the process itself.
Second, there are issues surrounding voice and involve-
ment (see Pellicano and Stears, 2011, for discussion).
Autistic adults report feeling that their voices are not often
heard (Milton and Bracher, 2013; Pellicano et al., submit-
ted). In fact, autistic adults in one of our focus groups and
parents in another raised precisely this issue. Efforts
towards greater involvement in making decisions about
research must ensure therefore that such involvement is
genuine, not tokenistic, and that care is taken to reduce the
power inequalities that might exist between researchers
and the autism community. Furthermore, there is no single
voice for the autism community, making it likely that disa-
greement between autistic people and between members
of other stakeholder groups will be inevitable. These dif-
ferences might not easily be resolved, but there is clearly
room for more dialogue on how decisions are made about
research funding.
On the issue of stakeholder (dis)agreement, we were
interested to see whether the views of the autism commu-
nity accorded with those of the researcher community. For
the most part, there was striking agreement between these
communities. In the survey in particular, researchers pri-
oritised very similar research questions to all other stake-
holder groups – research into service development, life
skills and how autistic people think and learn. These find-
ings could be attributable to the demand characteristics of
the survey, wherein researchers in particular were simply
responding in a socially desirable way, although similar
views were also expressed by junior and senior autism
researchers in focus groups and interviews that included a
range of views and discussions. Yet, there were some note-
worthy differences in the views and perspectives of stake-
holder groups. Autistic adults prioritised research on
services, interventions and supports but, unlike other
stakeholder groups, they did not support those that adopt a
normalising approach – that is, that treat the core symp-
toms of the condition. They argue that such an approach
768 Autism 18(7)
can not only be damaging to an individual’s self-worth but
is also challenging because it views the difficulties that
autistics face as straightforwardly emanating from their
own ‘condition’, rather from the changeable nature of the
world around them (e.g. Bagatell, 2010). Many autistic
adults therefore advocate approaches that seek both to help
individuals themselves deal with the neurotypical world
and to accommodate the needs of autistic people by modi-
fying the surrounding environment. This view contrasts
with many parents, who reported wanting support to help
their child develop competencies as well as to negotiate or
manage the environment.
One priority identified by stakeholders – autistic adults
and parents in particular – did not focus on research as
such, but on awareness of autism by professionals and the
broader public. These stakeholders called for more knowl-
edge exchange between researchers and professionals and
between researchers and the public. Recent UK practice
initiatives, such as the NICE guidance on the recognition,
referral, diagnosis and management of children and adults
on the autism spectrum (NICE, 2011, 2012, 2013) and the
NICE Quality Standards for the delivery of health and
social care services, should go some way to improving the
training that professionals receive and to enhancing the
care and support for those with the condition. Research is
needed, however, into how such guidance is implemented
and whether it does in fact enhance services for autistic
children, adults and their families. Autism has dramati-
cally captured public attention in the last decade (Pellicano
and Stears, 2011). Although some might suggest this
greater awareness to be a good thing, for our parent partici-
pants at least, the common (mis)perceptions of autism
(like the savant stereotype and the ‘in a sense we’re all
autistic’ stereotype (Draaisma, 2009; see also Jones and
Harwood, 2009)) undermined the everyday realities and
complexities of living with autism. More needs to be done
to communicate accurate information about autism to the
wider public.
Limitations
Our questionnaire data were gathered via a self-selected
Internet sample, not a population representative sample.
The snowball sampling technique we used has advantages
(of accessing previously ‘hidden’ populations; Atkinson
and Flint, 2001) but is potentially biased towards the inclu-
sion of individuals with greater inter-connections (e.g.
female autistics) and may well miss those who are not con-
nected to any network that we tapped into. We also did not
measure participants’ ethnicity or their socioeconomic sta-
tus – two factors that might affect views on research priori-
ties. We therefore cannot be certain that the priorities
identified by our self-selected sample are representative of
all the views of the autism community, particularly of the
full range of professionals that work with autistic people,
especially adults, of those autistic people who cannot com-
municate well enough to advocate for themselves and of
‘hard-to-reach’ populations (e.g. socially disadvantaged,
ethnic/racial minorities).
Nevertheless, our community members both in the
focus groups/interviews and the survey prioritised research
that could help them, their families or those they work with
in the here-and-now. If there was a sampling bias in which
certain subgroups of the community (e.g. ethnic minorities
and people from lower income households) were system-
atically excluded from participating, one might expect that
the pattern of results should be qualitatively similar to the
ones reported here but more pronounced by degree, given
that these subgroups are even less likely to be accessing
critical available services (Shattuck et al., 2012).
Another limitation is that stakeholders held varying
degrees of knowledge about what is currently happening
in UK autism research. We attempted to overcome this
limitation by presenting all stakeholders with the find-
ings of a recent review of autism research funding
(Pellicano et al., 2013), but it is still possible that partici-
pants’ prior knowledge may have influenced their per-
ceptions of gaps in current research and their priorities
for future research.
Conclusion
To our knowledge, this is the first attempt to investigate
the views of a wide stakeholder group about UK autism
research. The results suggest that there is a large discrep-
ancy between the research priorities identified by partici-
pants and the current UK research portfolio. This research
activity should be broadened to reflect the priorities of the
UK autism community, focusing in particular on research
that helps people live with autism. Our results suggest the
importance of making autism research more democratic
(Pellicano et al., 2011; Pellicano and Stears, 2011), includ-
ing greater involvement of the autism community in prior-
ity-setting exercises. Research funders are encouraged to
use these and new priority-setting exercises to steer
research in specific areas (e.g. to delineate precisely which
interventions and treatments should be prioritised) to
ensure that the research being done makes the most impact
on the lives of the people who need it most.
Acknowledgements
We thank our partners, Deepa Korea, Richard Mills and Helen
Finch at Research Autism and members of the Advisory Group
for their support, Janina Brede and Rebecca McMillin for assis-
tance coding the research, Erica Salomone and Mark Taylor for
help during the focus groups, Dan Sinclair for production of fig-
ures and Simon Baron-Cohen, Virginia Bovell, Patricia Howlin,
Jane Lewis and Marc Stears for helpful discussion. We are also
grateful to all those who took part in the survey, focus groups or
interviews and to the schools and community groups who helped
us recruit participants, including ADHD and Autism Support
Pellicano et al. 769
Harrow, London Borough of Barnet Autism Advisory Team,
Merton Mencap, the National Autistic Society’s West London
Branch, Phoenix School, Queensmill School and the Pan London
Autism Schools Network (PLASN).
Funding
This work was funded by the Inge Wakehurst Foundation, the
Charles Wolfson Foundation and The Waterloo Foundation.
Notes
1. The term ‘autistic person’ is the preferred language of many
people on the spectrum (e.g. Sinclair, 1999). In this article,
we use this term as well as person-first language to respect
the wishes of all individuals on the spectrum.
2. We use the term ‘autism community’ to reflect the varied
nature of this group, which includes those who are autistic
themselves and those who care for, or who work with, autis-
tic children, young people and adults.
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