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Autism research has seen tremendous growth over the last
decade (Interagency Autism Coordinating Committee
(IACC), 2013; Pellicano et al., 2013). This research has
the potential to transform the lives of autistic people1 and
their families, when it is relevant, valued and effectively
implemented. Yet, efforts to apply research findings in
public services and professional support have not always
been forthcoming, raising serious questions about the util-
ity of past and existing models of practice in autism
research (Milton and Bracher, 2013; Pellicano et al.,
2014b; Pellicano and Stears, 2011). Participatory research
enables meaningful input from autistic people in autism
research. It is one important way to overcome barriers to
effective translation and to ensure that research yields rel-
evant benefits (Long et al., 2017).
By participatory research, we mean incorporating the
views of autistic people and their allies about what research
gets done, how it is done and how it is implemented (Cornwall
and Jewkes, 1995). A key principle of participatory research
is the recognition, and undermining, of the traditional power
imbalance between researcher and participant (Nelson and
Wright, 1995). One way to conceptualise this power imbal-
ance is using Arnstein’s ladder of participation – a visual
Making the future together:
Shaping autism research through
Sue Fletcher-Watson1, Jon Adams2, Kabie Brook3,
Tony Charman4, Laura Crane5, James Cusack6, Susan Leekam7,
Damian Milton8,9, Jeremy R Parr10 and Elizabeth Pellicano11
Participatory research methods connect researchers with relevant communities to achieve shared goals. These methods
can deliver results that are relevant to people’s lives and thus likely to have a positive impact. In the context of a
large and growing body of autism research, with continued poor implementation, and some evidence of community
dissatisfaction, there is a powerful case for participatory autism research. In order to develop a framework for such
collaborative working, a UK seminar series was organised and co-produced by autistic and non-autistic people with
academic, practitioner and lived expertise. This article reports on the outcomes from the series, identifying five topics
relevant to building a community of practice in participatory research: Respect, Authenticity, Assumptions, Infrastructure
and Empathy. Each topic is connected to a specific example from within and beyond research, to inspire new practices
in the field. We call for the development of participatory research skills among the autism research community and the
facilitation of greater autistic leadership of, and partnership in, research. Such work, if delivered to a high standard, is
likely to lead to better translation into practice and improved outcomes for autistic people and those who support them.
autism, community, disability rights, involvement, methods, participatory research
1The University of Edinburgh, UK
2Flow Observatorium, UK
3Autism Rights Group Highland, UK
4King’s College London, UK
5University College London, UK
7Cardiff University, UK
8Participatory Autism Research Collective, UK
9University of Kent, UK
10Newcastle University, UK
11Macquarie University, Australia
Sue Fletcher-Watson, Patrick Wild Centre, The University of Edinburgh,
Kennedy Tower, Morningside Terrace, Edinburgh EH10 5HF, UK.
786721AUT0010.1177/1362361318786721AutismFletcher-Watson et al.
2 Autism 00(0)
metaphor which explicitly illustrates different types of par-
ticipation in terms of increasing power (Arnstein, 1969).
These range from no power (e.g. recipient of therapy),
through tokenism (e.g. informing and consultation), to
devolved power (e.g. partnership and citizen control). This
influential model has been critiqued, among others, for its
failure to recognise that participation itself can be a goal and
that process and diversity of experience matter as much as
outcome (Tritter and McCallum, 2006). While these com-
ments have clear relevance to autism, especially when con-
sidering ways to include autistic people with learning
disabilities, the ladder remains a useful shorthand. We would
currently conceptualise much of autism research as involving
no power, or only tokenistic forms of power, for the autistic
community and their allies (Nicolaidis et al., 2011).
Specific manifestations of participatory research might
include leadership by autistic researchers, partnership
with autistic people or allies as co-creators of knowledge,
engagement with the community in general (e.g. via social
media) and consultation with relevant individuals or com-
munity organisations. Another key feature of participatory
research is inclusiveness including adapting the research
environment, methodology and dissemination routes to
permit the widest and most accessible engagement, or
engagement from specific groups (e.g. non-speaking autis-
tic people and people with additional intellectual disabili-
ties – see Long and Clarkson, 2017). Participatory research
is ethically informed by the values of the community, for
example, in the selection of research questions and study
objectives. Moreover, input from this community can
improve the quality of research methods, contextualise
findings within real-world settings and thereby enhance
the translation of findings into practice (Carrington et al.,
2016; Grinker et al., 2012; Parr, 2016; Parsons and Cobb,
2013). However, there is evidence that this engagement is
not yet prevalent in the field.
The UK report A Future Made Together (Pellicano
et al., 2013) sought the views of autistic people and their
families, researchers and practitioners (including people
identifying with multiple such categories) about their
experiences of being involved in research. One key finding
from the report was that research funding and output in the
United Kingdom does not align with the views of autistic
people, family members and practitioners on what research
questions should be prioritised – a clear barrier to transla-
tion. Views on the prevalence of participatory research
were contrasting – while researchers perceived themselves
to be engaged with the autism community in both dissemi-
nation and discussions about their research, community
members, most notably autistic people and their families,
did not share this view (Pellicano et al., 2014b).
Successful participatory research requires both cultural
and structural changes (Raymaker and Nicolaidis, 2013).
Cultural issues include the fact that non-autistic research-
ers and funders in the field have traditionally seen the
primary role of autistic people as participants in research
studies (the ‘subjects’ of research). Involving autistic peo-
ple in active and powerful research roles may be seen to
compromise the scientific integrity of the project.
Structural issues include the combined effect of general
barriers to autistic employment (Lorenz et al., 2016)
together with the competitive funding and job market of
academia. For example, skilled mentoring and support,
essential to post-graduate study and career development
for autistic researchers, may be in short supply (Ridout,
2018; Ridout and Edmondson, 2017). For autistic people
and family members who are not researchers, there are few
opportunities to have meaningful input into decisions
about what research gets funded. Put bluntly, the tradi-
tional autism research culture – in common with many
fields of scientific enquiry (Nicolaidis and Raymaker,
2015) – is inadequate regarding the extent to which autistic
people have been able to shape the research agenda, its
implementation and dissemination of its findings.
Fortunately, there has been increasing recognition inter-
nationally that this situation needs to change, with autistic
advocates, academics and activists being some of the
strongest voices to speak to these issues (Michael, 2016;
Milton, 2014; Nicolaidis et al., 2011; Pellicano et al.,
2011). There are signs of a much-needed improvement,
from openly discussing these issues (Wright et al., 2014),
to communities of researchers and autistic people begin-
ning to enact change (Stahmer et al., 2017). In this article,
we report on a seminar series, jointly developed and hosted
by people from the autistic and research communities,
which aimed to move the field forward by identifying bar-
riers to, and solutions for, participatory autism research.
The series itself also provided an opportunity to develop
models of good practice in co-creation of knowledge.
The shaping autism research seminar series
We received funding from the UK’s Economic and Social
Research Council (ESRC) to hold a series of seminars to
discuss these very issues and determine how autistic people
and their allies could shape the future of autism research
and practice (Table 1). Seminars were organised, hosted,
attended and led by a wide and diverse group. This included
researchers (autistic and non-autistic), stakeholders from
the autistic community (i.e. autistic people including those
with an autism spectrum diagnosis and those who self-iden-
tify) and their allies – the broader autism community –
including family members, education and healthcare
professionals; third-sector organisations, commissioners
and policy-makers; and autism research funders. Many
people fell into multiple categories: for example, autistic
parents of autistic children; autistic education, healthcare or
social care practitioners (Table 1).
During the series, our overarching goal was to examine
how autism research could become more participatory in
Fletcher-Watson et al. 3
nature (Israel et al., 2005). One result of participatory
research should be that research activities and findings are
more meaningful – that is, relevant to the community, con-
sistent with their values, and not tokenistic in delivery.
Thus, the seminars strove to identify, highlight and embody
models of best practice, sharing examples of real and
meaningful participatory research from which others could
learn. We also sought to identify both barriers to, and pos-
sibilities of, more inclusive models of working between
autistic people and researchers.
Across 3 years, we held six seminars on three overlap-
ping research areas: Autism Practice, Public Services and
Autism and Society (Table 1). These areas had been identi-
fied in A Future Made Together (Pellicano et al., 2013) as
needing further attention from the research community,
relative to more basic science areas and, critically, were
also highlighted as priorities for the autism community. At
each seminar, we included autistic people (researchers and
community leaders) in the planning, organisation and
delivery of the seminars, and featured a mixture of local,
national and international speakers. We also had a special
emphasis on the next generation of autistic and non-autis-
tic early career researchers with the aim of capacity build-
ing and improving the future research landscape in the
United Kingdom. In total, approximately 200 people were
involved in some way in the series with further reach
orchestrated via social media (#shapeARUK). Across the
seminars, there was remarkable consistency of opinion
among delegates about the need for, barriers to, and best
practice models for, participatory autism research. The
resulting key considerations in effective participatory
working for autism research are presented here, grouped
under five topic headings.
Key topics in participatory autism research
The final seminar in the series was a 1-day meeting to dis-
cuss methods and forms of participatory working. While
the first five seminars were large open events, the final
seminar meeting was for a small group of seminar leaders,
and selected community representatives and academics. It
was attended by 12 people, including 5 who were autistic,
3 who were parents of autistic children, 3 who were work-
ing practitioners from clinical and community services and
10 who were academics – with substantial overlap between
categories in all combinations. The five topics described
below emerged from an iterative discussion process at the
meeting, supported by an additional three facilitators. A
sub-set of the original group, including autistic and non-
autistic people from within and outside academia, are now
co-authors on this article.
The discussion concentrated on complex issues in par-
ticipatory research, aiming to challenge the thinking even
of those who are already supportive of the participatory
research agenda. Thus, topics selected for elaboration
here (see Figure 1) aim to move the debate forward,
rather than repeating those (noted elsewhere) which
motivated the series (e.g. need for adapted sensory envi-
ronments; avoidance of deficit models and terminology
– see Nicolaidis et al. (2011) and Pellicano and Stears
(2011), for an expansion of these topics). Nevertheless,
we recognise that some researchers new to participatory
working may wish to read more around the background
debates that motivated us to propose the seminar series.
With such individuals in mind, many relevant resources
have been developed and collected at the series website:
Each topic section includes a single case study (Boxes 1
to 5) highlighting an example from research or practice rel-
evant to the point under discussion. While the first five
seminars themselves were organised around domains of
working relevant to research, such as practice and public
services, the headings emerging from this meeting were
based on discussion of ways of working which transcend
academic disciplines or research targets. Our goal is also to
share potential solutions to enable collaborative working,
not just to identify barriers. Thus, our chosen exemplars
describe methods of participatory working (e.g. autistic
leadership and supportive infrastructures) but not necessar-
ily research activities.
Table 1. The seminars.
Topic Title Location
1 Autism practice Developing and sharing approaches to research informed
practice for children and young people
2 Public services Developing more effective health and social care services in
partnership with the autism community
3 Public services Developing more effective public services in partnership
with the autism community
4 Autism and society Doing autism research well – building a participatory
framework for autism research
5 Autism and society Autistic well-being London
6 Autism practice Learning and sharing lessons on how to conduct autism
4 Autism 00(0)
Box 1. Respect – how to respectfully represent lived experience in research (www.knowyournormal.co.uk).
In the Know Your Normalproject, a team of autistic volunteers from the UK charity Ambitious about Autism approached
academics from the Centre for Research in Autism and Education, University College London, to co-produce research on a topic
that they identified as a priority issue – mental health in young autistic people. The team worked in partnership to design the study,
conduct the research, and analyse and interpret the data, and write-up and disseminate the results; with the academic researchers
ensuring that the research was methodologically and ethically sound, and the autistic volunteers ensuring that the research was
relevant and meaningful to the autistic community, representing their lived experience (Crane et al., 2018).
Strengths of this approach Limitations of this approach
Focus on a priority area for autistic people and involvement
of autistic co-researchers facilitated recruitment into the
study and engagement with findings
Autistic co-researchers obtained hands-on experience of
conducting a research project to completion
Autistic researchers limited from data collection due to time
constraints and personal relationships with participants
Relied on an approach from an autistic group to get the
project off the ground – project would not have happened
without their confidence and resourcefulness
Figure 1. Current topics in participatory autism research.
Box 2. Authenticity – how autism communities can shape a research agenda (www.autistica.co.uk/our-research/your-research-
Autistica and a consortium of partners launched a James Lind Alliance Priority Setting Partnership to define the top 10 autism
research questions. This was an independently facilitated and validated process, which surveyed a representative sample of autistic
people, caregivers and professionals before bringing them together to reach agreement on the top 10 through a final workshop.
Importantly, the process deliberately excluded researchers from the final workshop so that the top 10 is a genuinely community-
led, authentic list (Cusack and Sterry, 2016).
Strengths of this approach Limitations of this approach
Independent facilitation achieved consensus across groups
and ensured power balance between groups
Impact includes increased likelihood of major autism
research funding from government and charitable
Merging perspectives of a diverse group into homogeneous
outcomes can result in under-specified priority research topics
It remains challenging to fully include everyone on the
spectrum (e.g. those with additional intellectual disabilities
and limited spoken communication)
Topic 1: respect
One clear and consistent message from the autistic com-
munity and their allies was the need for autistic voices
(incorporating all types of communication) to be heard and
taken seriously at all stages of the research process.
Seminar delegates reported that the lived experiences of
autistic people – their ‘experiential expertise’ (Collins and
Evans, 2002) – is rarely apparent in the context of autism
research, though notable exceptions were identified (see
Box 1). Perhaps, related to this, non-autistic academics at
the seminars often had similar concerns about whether
their expertise and perspectives would be respected by
autistic delegates, especially those from outside academia.
Fletcher-Watson et al. 5
Indeed, a crucial component of engagement is to ensure
that community representatives understand the context in
which research (and indeed service delivery) takes place.
Setting expectations about the limitations and timelines of
research is essential to allow both partners work towards a
shared goal. During the series, through dialogue, listening
to one another’s viewpoints, recognising differences and
accepting that there was not always agreement, mutual
respect between autistic and non-autistic members grew
from meeting to meeting.
How was this achieved? During the series, members of
the autistic and autism communities played prominent roles
in every event, including as co-applicants for funding, co-
convenors, speakers, panellists and discussion group leaders.
Community representation was visible, and in sufficiently
high numbers (from about one-third to half of all in
attendance) to give confidence to delegates from these
groups. Moreover, substantial energy was put in to making
each seminar as autism-enabling as possible by creating a
suitable sensory environment and providing a quiet space.
We reduced power inequalities between autistic and non-
autistic contributors by including clear terms of reference for
participation in the seminar programme, so that all delegates
had a shared expectation of what the seminar would involve.2
In all seminar series materials, presentation titles and so on,
language was selected which characterised autism in neutral
terms – for example, we neither refer to autistic people as
patients nor to autism as a disease or misfortune.
In this way, respect was made overt, allowing seminar
delegates to move beyond traditional barriers and instead
focus on both a need and an opportunity for working
together to deliver benefits to autistic people and their
Box 3. Assumptions – best practice in autistic leadership and community advocacy (www.arghighland.co.uk).
Autism Rights Group Highland (ARGH) is a collective of Autistic Adults based in Scotland. They work together to lobby,
campaign and educate. Recent activities include a successful campaign to remove puzzle piece imagery from the journal Autism.
They are now focused on securing continued funding for a local service – the Highland One Stop Shop – providing support
to local autistic people and their families encompassing diagnosis and post-diagnostic support, social activities and clubs, and
guidance on benefits, housing and employment.
Strengths of this approach Limitations of this approach
Many voices working together add strength and weight to a
Elected spokespeople are responsible to, and scrutinised
by, the membership. They can be removed from post if the
membership so wish
Reaching consensus between diverse members is difficult
Communication between members is time consuming
and effortful: multiple methods are used and equal weight
must be given to all voices regardless of their method of
Box 5. Empathy – how to build effective working partnerships (www.artscatalyst.org/jon-adams-konfirm).
Konfirmation Systemisation: Rethinking Autistic Thinking was an artist residency within the ARC Cambridge in collaboration with
The Arts Catalyst, London and artist Jon Adams. Supported by Wellcome Trust funding, this residency led to poetry, image and a
series of musical compositions made from fMRI machine noise.
Strengths of this approach Limitations of this approach
Independent funding expands the range of opportunities for
The research group were influenced by the autistic artist’s
presence, leading to a reconsideration of their views of autism
To be successful, this requires investment of time on both
sides and a willingness to challenge existing ‘knowledge’ or
Independent funding may be hard to secure
Box 4. Infrastructure – how to support and encourage autistic academics and activists (participatoryautismresearch.wordpress.com/).
The Participatory Autism Research Collective (PARC) was set up to bring autistic people, including scholars and activists,
together with researchers and practitioners who work with autistic people. Their aim is to build a community network, where those
who wish to see more significant involvement of autistic people in autism research can share knowledge and expertise.
Strengths of this approach Limitations of this approach
While it is autistic-led, the group is inclusive of autistic and
The group specifically aims to support early career
researchers and practitioners
Autistic-led groups like PARC, operating independently of
a host institution, may struggle to secure funding
The membership is widely distributed across the United
Kingdom, making collaboration and collective action
difficult at times
6 Autism 00(0)
allies. The result was that the series itself had become an
example of participatory practice and the foundation for a
community of informed, mutually-engaged and respectful
stakeholders (within and beyond academia) building inter-
actional expertise for autism research (Collins and Evans,
2002; Milton, 2014; Pellicano and Stears, 2011). This
experience gave rise to three core principles of participa-
tory research, which have formed the basis of a starter
pack for researchers (Pellicano et al., 2017).
Topic 2: authenticity
The seminars attracted many people who started from the
point of view that participatory research is both morally
right and practically beneficial. For this reason, much of
the discussion quickly moved from a focus on basic barri-
ers to participation (e.g. failure to provide an accessible
environment) to more complex dimensions of high-quality
engagement. The first key issue identified by delegates
was tokenistic involvement, in which people’s input does
not influence the outcomes. Engagement such as this,
which serves only the purpose of ‘ticking a box’ – for
example to meet a funder or ethics review board require-
ment – is not authentic engagement. At best, such
approaches may fail to deliver useful results; at worst, they
are insulting and excluding to autistic people and their
allies, damaging the relationship between autistic people
and researchers, and leading to non-participation in future
research. It was agreed that to avoid tokenism, researchers
should collaborate with community representatives who
have expertise and experiences relevant to the specific
topic under discussion; engage in open dialogue; listen and
be prepared to learn from this expertise, make changes in
response to feedback; and acknowledge the imbalance of
power in most research scenarios.
Addressing an unequal power balance was the second
key issue in quality engagement. Sometimes researchers
using quantitative methods incorporate qualitative compo-
nents into their project (to seek/reflect the views of autistic
people) and assume that this constitutes good engagement.
Yet, when conducting interviews or focus groups, the
researcher still has almost total control – selecting partici-
pants, scripting questions, hosting the meeting, pooling
data and drawing conclusions. Participatory working,
including engagement prior to designing a study or seek-
ing funding (see Box 2), is distinct from qualitative meth-
ods to answer a research question, in that it provides an
opportunity for community members to shape the focus of
the research itself. Continued consultation as research pro-
gresses can have a similar impact on research interpreta-
tion, dissemination and implementation.
A power imbalance may still apply when autistic and
non-autistic academics work together: a clear message
from the autistic academics at the seminar was about the
disadvantages they face working in a high-expectation
environment that often fails to recognise needs and
provide suitable support (see Infrastructure below). To
address power imbalances, people agreed that non-autistic
researchers should consider meeting autistic people in
places of their choosing, and opening up a dialogue that is
not constrained by specific research questions. By spend-
ing time with autistic people, without an agenda or specific
idea of what the researcher wants to do, we can build
research questions on autistic input from the very outset.
This argument aligns closely with the ‘slow science’ move-
ment (Alleva, 2006), which emphasises investment of time
and resources in the thoughtful consideration and selection
of ideas before data collection. Even without such invest-
ment, attending autistic-led events such as Autscape in the
United Kingdom or Autreat in the United States and read-
ing the work of autistic bloggers are both ways to engage
without imposing a priori assumptions and with only mod-
est resources required.
Topic 3: assumptions
The seminars addressed assumptions about autism that
need to be challenged. Diagnostic criteria for autism
include descriptions about ‘deficits’ of social-emotional
reciprocity, non-verbal communication and relationships.
Understanding of autism has largely moved on from
attempts to characterise autism in terms of a single, univer-
sal ‘deficit’ and now recognises the diverse pattern of fea-
tures. Nevertheless, in the context of community
engagement, a belief that autism is characterised by – for
example – an inability to understand others has been used
as an excuse not to engage with autistic people (Pellicano
et al., 2014a). Autistic delegates at the seminars reported
that often an autistic person may not be considered a legiti-
mate spokesperson for their wider community, even when
acting as an elected representative of a community group.
This phenomenon is probably exacerbated by the wide
variety of autistic dispositions: there is concern that ver-
bally and cognitively able autistic adults cannot speak on
behalf of those who have intellectual disabilities and/or
significant barriers to communication.
In contrast, our experience demonstrates the opposite.
The seminars heard from multiple examples of autistic peo-
ple supporting their peers, such as autistic advocates aiding
members of their community to access health and social
care (see Box 3). That said, some autistic people may
(understandably) object to being expected to advocate on
behalf of ‘their community’ – we should not mistake a drive
towards a participatory research agenda for a pressure on
individual autistic people to become advocates and activ-
ists. In addition, during the seminars, aspects such as recog-
nition of intersectionality (the overlapping disadvantageous
influence of multiple characteristics subject to discrimina-
tion – such as race, sexuality and neurodiversity3), and con-
sideration of the needs of other neurodivergent people (e.g.
people with attention-deficit hyperactivity disorder
(ADHD), depression, dyspraxia, epilepsy or non-speaking
Fletcher-Watson et al. 7
autistic people) was consistently flagged by autistic dele-
gates when sometimes overlooked by the non-autistic peo-
Topic 4: infrastructure
One of the key requirements for effective participatory
research is supportive infrastructure. Delegates from
within and outside academia at the seminars were united in
their perception that the basic infrastructure of research –
especially scientific research – is not conducive to partici-
patory working. For example, some academics, working
from a traditional notion of objectivity, were concerned
that the scientific endeavour could be biased by engage-
ment with autistic partners. To those, we offer that serious
biases – for example, towards maintenance of the status
quo – can occur when research takes place without com-
munity influence. One example might be the interpretation
of both increased and decreased activation of brain regions
in an functional magnetic resonance imaging (fMRI) study
as reflecting autistic ‘deficits’ (Dawson and Mottron,
2011). Critical reflection on the meaning of experimental
tasks used in research, and involvement of autistic people
in interpretation of data, can help to avoid the automatic
attribution of deficits to data that are, in and of themselves,
One manifestation of this culture is that funder priori-
ties do not normally include community participation, or if
they do, this is rarely more than tokenistic. Funding strate-
gies are highly influential on the direction of research and
the methods used. Engaged funders could help to effect
culture change by requiring evidence of relevant commu-
nity consultation on all submitted proposals, incorporating
lay reviewers into their evaluation process, and following
up on researcher ‘Impact’ statements to check that pro-
posed dissemination and implementation plans have been
delivered. These measures require academic and non-aca-
demic reviewers to be sufficiently skilled to evaluate the
quality of proposed participatory activities. Without funder
endorsement, individual researchers attempting to build in
high-quality engagement may be demotivated to do so. It
is true that quality engagement takes time and costs money,
which may make proposals less competitive if the engage-
ment component is not valued by the funding body.
Researchers may be able to influence funder attitudes by
persistently incorporating participatory methods into their
proposals and by requiring these when asked to review
Where engagement is supported by funders, researchers
need to ensure that they cost consultancy fees for individu-
als and/or contributions to autistic-led organisations into
their proposals. Suitable payment, recognising the profes-
sional and personal expertise required for the role, and the
associated level of responsibility in relation to project
aims, is a key way to demonstrate respect and address the
power imbalance. However, we also note that even when
the funding is available the administrative logistics of
making a payment to a ‘lay consultant’ can be very chal-
lenging. Involve – a UK organisation for ‘patient and pub-
lic involvement’ in health research – has published useful
guidelines4 though in some cases, academics may find
these conflict with their grant reporting requirements or
Autistic researchers are significantly disadvantaged by
institutional and wider research infrastructure, which has
historically failed to recognise neurodiversity and often
serves to promote research by already privileged groups.
Current attempts to improve equality and diversity in the
United Kingdom higher education sector (e.g. Equality
Challenge Unit5) should be extended to incorporate the
issues faced by neurodivergent academics. Some universi-
ties are already making steps in this regard, since disability
is a protected characteristic under law in the United
Kingdom and many other countries 6. Nevertheless, part-
ners in the seminar series described ‘institutional ableism’
built into university systems and difficulty finding appro-
priate post-graduate supervision that recognised their
needs in relation to the work (Martin, 2010). Best practice
in this area has often been led by the neurodivergent com-
munity, as in the founding of the open-access journal
Autonomy (Arnold, 2012). Despite these strides, a change
to academic infrastructure is a necessary, but not suffi-
cient, step if we wish to achieve higher rates of autistic
leadership of research projects relating to autism.
Topic 5: empathy
The double empathy problem (Milton, 2012) highlights the
issue of ‘mutual incomprehension’ that exists between
some autistic and non-autistic people, in all walks of life.
Indeed, there is a growing body of evidence which demon-
strates empirically that non-autistic people may fail to com-
prehend autistic people (Sheppard et al., 2016), or
negatively judge them based on minimal evidence (Sasson
et al., 2017). If not addressed, this lack of shared under-
standing presents a significant barrier to effective research
collaboration. Thus, even those researchers who feel moti-
vated to engage with the autistic community may find
themselves unsure about where, or how, to start. In particu-
lar, autism researchers may be fearful that autistic people
will say something they disagree with or ask them to do
something in a project that they cannot easily do. The irony
of this should be obvious: researchers have been asking
autistic people to put up with both of these for decades.
Nevertheless, it is true that sometimes autistic people
will be very frank in their judgements about research plans
and processes, and fail to conform to social norms. This
can be challenging for non-autistic researchers, but should
also be viewed as an opportunity. Open dialogue about the
focus and methods of research, with autistic people and
8 Autism 00(0)
their allies who are not researchers, can not only help to
contextualise the work but also educate communities about
the realities of the research process. This is true knowledge
exchange, in which both parties gain new insights from the
interaction. While consensus will not always be achieved,
the process of dialogue and engagement remains valuable
as a source of mutual learning. Building up trusting profes-
sional relationships between researchers and community
members makes this learning more direct and easier for
both parties. Over the course of the seminar series, we
have been able to facilitate such relationships, leading to
the beginnings of a new, engaged ‘community of practice’
in autism research in the United Kingdom (Hart et al.,
2013). Crucially, such dialogue will not necessarily result
in consensus, but mutual learning is a process rather than
Next steps for participatory autism research
This report of themes emerging from the Shaping Autism
Research seminar series aimed to focus on solutions rather
than barriers to participatory research. Nonetheless, there
is still much work to be done. We characterise this work as
falling into two categories: supportive environments and
methodological challenges. The first category describes
various activities already touched on above, which are
necessary to build a culture where autistic people and their
allies can take on active, meaningful roles in research.
These include: changing the language we use to describe
autism (Gernsbacher, 2017; Kenny et al., 2016); modify-
ing or identifying physical spaces to enable autistic partici-
pation; and adapting the structures and bureaucracy of
academia to facilitate autistic involvement and leadership
in research. In so doing, we should draw on the experi-
ences of pioneers within (Frauenberger et al., 2013;
Gillespie-Lynch et al., 2017; Mason et al., submitted;
McConachie et al., 2018; Nicolaidis et al., 2013; Parsons
et al., 2013) and outside (Brett et al., 2014; Rose, 2003)
autism research. Showcasing these examples may help to
draw in community representatives who are sceptical
about the capacity for improvement in the research estab-
lishment. Another way to create a supportive environment
is to improve the research literacy of the community by
sharing insights into the research process and enabling
access to the scientific literature.
Supportive environments can also be applied to making
a space in which to welcome those academics who may
feel that the participatory research agenda does not recog-
nise the constraints and priorities of their research. Some
– such as those engaged in basic biological research – may
feel that their laboratory-based projects are far removed
from community concerns and thus that engagement is not
required. Early career researchers may identify with the
agenda, but lack the skills, resources or support to develop
this aspect of their work. Expanding our scientific
ideologies to make room for participation is a challenge,
but we must reach beyond the small, but growing, network
of autism researchers who do incorporate engagement as a
matter of course in their research.
Methodological challenges encompass those issues
which are not addressed by current roadmaps for participa-
tory research. A prominent example is the question of how
to capture the voices of autistic people who are not easily
integrated into even the fledgling participatory research
structures available at this time. This includes autistic chil-
dren, those with intellectual disabilities and those who do
not speak. While innovative practices are being developed
(Gaudion et al., 2014; McDonald and Stack, 2016; Ridout,
2014 see also Pellicano, 2018), we remain far from achiev-
ing meaningful, let alone routine, integration of these
voices into research.
Another difficulty, not restricted to the autism field, is
how to balance individual and collective opinion, includ-
ing how to respond to disagreements within and between
groups (Fletcher-Watson et al., 2017a; Milton, 2016).
Historically, parents of autistic children have been listened
to somewhat (Silverman and Brosco, 2007), and autistic
people less so. Parents, like practitioners and third-sector
workers, can advocate on behalf of their children and may
often be stakeholders in research themselves – they should
be included in the participatory agenda (Fletcher-Watson
et al., 2017b). For this reason, we have referred throughout
to engagement with both the autistic and the broader
autism community. Nevertheless, consultation with par-
ents of children on the autism spectrum should not happen
to the exclusion of autistic people themselves. Moreover,
when consulting with, for example, both autistic adults and
parents regarding a study with pre-schoolers, how should
researchers handle any conflicting advice from these
Even within a stakeholder category – for example,
among autistic people – there will be a broad diversity of
views. A particular challenge may be the case when an
individual from within the autistic community is advocat-
ing for a position which reflects their own view, but is not
well supported by a broader constituency of autistic peo-
ple. That said, it is misleading to suggest that consultation
with members of the autistic community gives non-autistic
researchers access to a consistent ‘community view’. One
way to address this is to ensure that any focused consulta-
tion with a specific individual is complemented by wider
engagement – perhaps via social media or at events (while
recognising the bias that can arise from these engagement
methods too). Ultimately, despite the challenges described
here, it is hoped that the growing autistic rights movement
and increasing prevalence of participatory research will
enable people to recognise and respect differences rather
than attempting to force a consensus (Milton et al., 2012).
In addressing methodological challenges, and building
supportive environments, we encourage researchers and
Fletcher-Watson et al. 9
others with relative influence and power (e.g. senior prac-
titioners, policy-makers and funders) to work with autistic-
led organisations in the United Kingdom, such as the
Participatory Autism Research Collective, All Wales
People First and Autism Rights Group Highland (Chown
et al., 2017). Such groups may have elected representa-
tives who can reliably speak for a larger community.
Moreover, by raising their profile, we can provide a focus
for autistic individuals who wish to be heard. In fact, it is
worth noting the leadership role which has been played by
autistic advocates and activists in pioneering the neurodi-
versity movement. The number of autistic-led organisa-
tions, publications (e.g. Autonomy; Beardon, 2017;
Lawson et al., 2017; Murray, 2005), online communities
(e.g. wrongplanet.net) and events (e.g. Autistic Pride,
Autreat and Autscape) is a testament to the energy and
dedication of this community. Such initiatives provide
opportunities for researchers to make connections which
may yield significant benefit to all involved.
The report presented here should be viewed as a way to
open up further discussion about the role, and delivery, of
participatory methods in autism research. One limitation is
that this discussion focused often on social sciences and
psychological methods, rather than on biological and neu-
rological research. There may be specific barriers that
apply in this content, not discussed here, such as the tech-
nical knowledge required to engage in a productive part-
nership with members of the autistic community. In the
medical research field, the work of groups such as Involve7
could provide a model to follow, though the mapping
between engagement with patients and research with autis-
tic people may be inadequate.
We do not present a series of empirically-derived rec-
ommendations but instead report on the intensive consid-
erations of a small but diverse group, drawing on the
broader discussions across an entire seminar series. The
seminar series was not fully inclusive to people with a
learning disability, and no non-speaking autistic people
took part. These key demographics were not represented,
though parents and other allies of such individuals did take
part – including in co-authorship of this publication. While
there is guidance on how to start out in participatory
research (Pellicano et al., 2017), materials to enable this
burgeoning community of practice to extend and improve
their work, and specifically to include a wider diversity of
autistic perspectives, remain lacking (though see Scott-
Barrett et al., 2018).
While our seminar series was created around a series of
research areas, the topics which emerged from the six
events concern the why and how, more than the what of
research. Differing perspectives from the autism commu-
nity and research community were expressed, enabling
institutional assumptions to be challenged, and ultimately
articulating a common vision for mutual and equal
engagement. Our collective hope is that the foundations
laid throughout the Shaping Autism Research seminar
series will lead to a greater, co-created knowledge base
for the better integration of community perspectives in
research. This will not come easily and can only happen
with considerable effort from relevant communities and
stakeholders, as well as evaluation of the effectiveness of
participatory methods. The opportunity is to create a bur-
geoning, merged community of research practice, includ-
ing autistic and non-autistic people and other partners
who work collaboratively to create facilitative environ-
ments and resolve important, relevant questions. The
research evidence developed in this context should then
be implemented, providing structures to support autistic
people and their allies, and is more likely to achieve this
goal having been co-created. Meaningful participation in
autism research can help us make a better future for autis-
tic people, together.
This work was authored by a sub-set of the Shaping Autism
Research seminar series leaders, including the original co-appli-
cants for funding and those who played an active role in shaping
the text of this article. The content of the article, however, was
built on discussions between all seminar participants, and espe-
cially the small working group who met for Seminar 6. We are
particularly grateful to these additional working group members:
Melissa Bovis, Katie Gaudion, Lorcan Kenny, Joe Long and
The author(s) disclosed receipt of the following financial support
for the research, authorship, and/or publication of this article:
This work was supported by a grant from the UK’s Economic
and Social Research Council (ES/M00225X/1). E.P. was sup-
ported by a Philip Leverhulme Prize awarded by the UK’s
1. Identity-first language (e.g. autistic people) is the preferred
language of many people on the autism spectrum (see
Sinclair, 2013) and their parents (Kenny et al., 2016). It is
also the preferred language of the autistic co-authors of this
report. We, therefore, use identity-first terminology in this
2. A template programme for autism-enabling events is avail-
able on www.shapingautismresearch.co.uk.
3. Neurodiversity is defined as the range of differences in indi-
vidual brain function and behavioural traits, regarded as part
of normal variation in the human population, encompassing
diagnostic categories such as autism.
10 Autism 00(0)
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