ArticlePDF Available

Making the future together: Shaping autism research through meaningful participation

Authors:
  • Institute of Psychiatry, Psychology & Neuroscience, King's College London

Abstract and Figures

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.
Content may be subject to copyright.
https://doi.org/10.1177/1362361318786721
Autism
1 –11
© The Author(s) 2018
Reprints and permissions:
sagepub.co.uk/journalsPermissions.nav
DOI: 10.1177/1362361318786721
journals.sagepub.com/home/aut
Introduction
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
meaningful participation
Sue Fletcher-Watson1, Jon Adams2, Kabie Brook3,
Tony Charman4, Laura Crane5, James Cusack6, Susan Leekam7,
Damian Milton8,9, Jeremy R Parr10 and Elizabeth Pellicano11
Abstract
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.
Keywords
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
6Autistica, UK
7Cardiff University, UK
8Participatory Autism Research Collective, UK
9University of Kent, UK
10Newcastle University, UK
11Macquarie University, Australia
Corresponding author:
Sue Fletcher-Watson, Patrick Wild Centre, The University of Edinburgh,
Kennedy Tower, Morningside Terrace, Edinburgh EH10 5HF, UK.
Email: sue.fletcher-watson@ed.ac.uk
786721AUT0010.1177/1362361318786721AutismFletcher-Watson et al.
research-article2018
Original Article
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:
www.shapingautismresearch.co.uk.
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
Edinburgh
2 Public services Developing more effective health and social care services in
partnership with the autism community
Newcastle
3 Public services Developing more effective public services in partnership
with the autism community
Cardiff
4 Autism and society Doing autism research well – building a participatory
framework for autism research
London
5 Autism and society Autistic well-being London
6 Autism practice Learning and sharing lessons on how to conduct autism
research well
London
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-
priorities).
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
organisations
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
campaign
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
engagement
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
people involved
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
assumptions
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
non-autistic academics
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-
ple present.
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,
value-neutral.
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
proposals.
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
University procedures.
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
an outcome.
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
groups?
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.
Limitations
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).
Conclusion
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.
Acknowledgements
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
Susy Ridout.
Funding
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
Leverhulme Trust.
Notes
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
article.
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)
4. http://www.invo.org.uk/posttypepublication/involve-pol-
icy-on-payments-and-expenses-for-members-of-the-public-
including-involve-group-members-february-2016/
5. https://www.ecu.ac.uk/
6. http://www.ncl.ac.uk/diversity/assets/documents/equality_
strategy_2014-16-jh.pdf
7. http://www.invo.org.uk/
ORCID iDs
Sue Fletcher-Watson https://orcid.org/0000-0003-2688-1734
Laura Crane https://orcid.org/0000-0002-4161-3490
References
Alleva L (2006) Taking time to savour the rewards of slow sci-
ence. Nature 443(7109): 271.
Arnold L (2012) Introduction to Autonomy: The Critical Journal
of Interdisciplinary Autism Studies. Autonomy: The Critical
Journal of Interdisciplinary Autism Studies 1(1): 1.
Arnstein SR (1969) A ladder of citizen participation. Journal of
the American Institute of Planners 35(4): 216–224.
Beardon L (2017) Autism and Asperger Syndrome in Adults.
London, Sheldon Press.
Brett J, Staniszewska S, Mockford C, et al. (2014) Mapping the
impact of patient and public involvement on health and social
care research: a systematic review. Health Expectations
17(5): 637–650.
Carrington SJ, Uljarević M, Roberts A, et al. (2016) Knowledge
acquisition and research evidence in autism: researcher
and practitioner perspectives and engagement. Research in
Developmental Disabilities 51: 126–134.
Chown N, Robinson J, Beardon L, et al. (2017) Improving
research about us, with us: a draft framework for inclusive
autism research. Disability & Society 32: 1–15.
Collins HM and Evans R (2002) The third wave of science stud-
ies: studies of expertise and experience. Social Studies of
Science 32(2): 235–296.
Cornwall A and Jewkes R (1995) What is participatory research?
Social Science & Medicine 41(12): 1667–1676.
Crane L, Adams F, Harper G, et al. (2018) ‘Something needs to
change’: Mental health experiences of young autistic adults
in England. Autism. Epub ahead of print 7 February 2018.
DOI: 10.1177/1362361318757048.
Cusack J and Sterry R (2016) Your Questions: Shaping Future
Autism Research. London: Autistica.
Dawson M and Mottron L (2011) Do autistics have cognitive
strengths? Should ASC be defined as disorders? In: Bolte S
and Hallmayer J (eds) Autism Spectrum Conditions: FAQs on
Autism, Asperger Syndrome and Atypical Autism Answered
by International Experts. Gottingen: Hogrefe, pp.32–34.
Fletcher-Watson S, Apicella F, Auyeung B, et al. (2017a)
Attitudes of the autism community to early autism research.
Autism 21(1): 61–74.
Fletcher-Watson S, Larsen K, Salomone E, et al. (2017b) What
do parents of children with autism expect from participa-
tion in research? A community survey about early autism
studies. Autism. Epub ahead of print 1 November. DOI:
10.1177/1362361317728436.
Frauenberger C, Good J, Alcorn A, et al. (2013) Conversing
through and about technologies: design critique as an
opportunity to engage children with autism and broaden
research(er) perspectives. International Journal of Child-
Computer Interaction 1(2): 38–49.
Gaudion K, Hall A, Myerson J, et al. (2014) Design and wellbe-
ing: bridging the empathy gap between neurotypical design-
ers and autistic adults. Design for Sustainable Wellbeing
and Empowerment 2014: 61–77.
Gernsbacher MA (2017) Editorial perspective: the use of person-
first language in scholarly writing may accentuate stigma.
Journal of Child Psychology and Psychiatry 58(7): 859–861.
Gillespie-Lynch K, Kapp SK, Brooks PJ, et al. (2017) Whose
expertise is it? Evidence for autistic adults as critical autism
experts. Frontiers in Psychology 8: 438.
Grinker RR, Chambers N, Njongwe N, et al. (2012)
‘Communities’ in community engagement: lessons learned
from autism research in South Korea and South Africa.
Autism Research 5(3): 201–210.
Hart A, Davies C, Aumann K, et al. (2013) Mobilising knowl-
edge in community−university partnerships: what does a
community of practice approach contribute? Contemporary
Social Science 8(3): 278–291.
Interagency Autism Coordinating Committee (2012) IACC/
OARC autism spectrum disorder publications analysis: the
global landscape of autism research. Interagency Autism
Coordinating Committee, US Department of Health and
Human Services, Washington, DC, July.
Israel BA, Parker EA, Rowe Z, et al. (2005) Community-based
participatory research: lessons learned from the Centres for
Children’s Environmental Health and Disease Prevention
Research. Environmental Health Perspectives 113(10): 1463.
Kenny L, Hattersley C, Molins B, et al. (2016) Which terms
should be used to describe autism? Perspectives from the
UK autism community. Autism 20(4): 442–462.
Lawson W, Turner T, Wilkinson A, et al. (2017) Love,
Partnership, or Singleton on the Autism Spectrum. London:
Jessica Kingsley Publishers.
Long J and Clarkson A (2017) Towards meaningful participa-
tion in research and support practice: effecting change in
autism services. In: Milton D and Martin N (eds) Autism
and Intellectual Disability in Adults, vol. 2. Hove: Pavilion
Publishing, pp.41–45.
Long J, Panese J, Ferguson J, et al. (2017) Enabling voice and par-
ticipation in autism services: using practitioner research to
develop inclusive practice. Good Autism Practice 18(2): 6–14.
Lorenz T, Frischling C, Cuadros R, et al. (2016) Autism and
overcoming job barriers: comparing job-related barriers and
possible solutions in and outside of autism-specific employ-
ment. PLoS ONE 11(1): e0147040.
McDonald KE and Stack E (2016) You say you want a revo-
lution: an empirical study of community-based participa-
tory research with people with developmental disabilities.
Disability and Health Journal 9(2): 201–207.
Martin N (2010) Minimising the stress of the PhD viva for stu-
dents with Asperger syndrome. Good Autism Practice
11(1): 52–57.
Mason D, McConachie H, Garland D, et al. (2018) Predictors
of quality of life for autistic adults. Autism Research. Epub
ahead of print 7 May 2018. DOI: 10.1002/aur.1965.
McConachie H, Mason D, Parr JR, et al. (2018). Enhancing
the validity of a quality of life measure for autistic people.
Journal of Autism and Developmental Disorders 48(5):
1596–1611.
Fletcher-Watson et al. 11
Michael C (2016) Why we need research about autism and age-
ing. Autism 20: 515–516.
Milton D, Mills R and Pellicano L (2012) Ethics and autism: where
is the autistic voice? Commentary on Post et al. Journal of
Autism and Developmental Disorders 44(10): 2650–2651.
Milton DE (2012) On the ontological status of autism: the ‘dou-
ble empathy problem’. Disability & Society 27(6): 883–887.
Milton DE (2014) Autistic expertise: a critical reflection on the
production of knowledge in autism studies. Autism 18(7):
794–802.
Milton DE and Bracher M (2013) Autistics speak but are they
heard? Journal of the BSA Medsoc Group 7: 61–69.
Milton DEM (2016) Educational Discourse and the Autistic
Student: A Study Using Q-sort Methodology. PhD
Dissertation, University of Birmingham, Birmingham.
Murray D (Ed.) (2005) Coming Out Asperger. London: Jessica
Kingsley Publishers.
Nelson N and Wright S (1995) Power and Participatory
Development: Theory and Practice. London: ITDG
Publishing.
Nicolaidis C and Raymaker DM (2015) Community based
participatory research with communities defined by race,
ethnicity, and disability: translating theory to practice. In:
Bradbury H (ed.) The SAGE Handbook of Action Research.
Thousand Oaks, CA: SAGE, pp.167–179.
Nicolaidis C, Raymaker D, McDonald K, et al. (2011)
Collaboration strategies in non-traditional community-based
participatory research partnerships: lessons from an aca-
demic – community partnership with autistic self-advocates.
Progress in Community Health Partnerships 5(2): 143.
Nicolaidis C, Raymaker D, McDonald K, et al. (2013)
Comparison of healthcare experiences in autistic and non-
autistic adults: a cross-sectional online survey facilitated by
an academic-community partnership. Journal of General
Internal Medicine 28(6): 761–769.
Parr JR (2016) How can we learn more about the lives of adults on
the autism spectrum from across the age range, and their rela-
tives? In: Wright S (ed.) Autism Spectrum Disorder in Mid and
Later Life. London: Jessica Kingsley Publishers, pp.288–296.
Parsons S and Cobb S (2013) Who Chooses What I Need?
Child Voice and User-involvement in the Development of
Learning Technologies for Children with Autism. Swindon:
EPSRC Observatory for Responsible Innovation in ICT.
Parsons S, Charman T, Faulkner R, et al. (2013) Commentary –
bridging the research and practice gap in autism: the impor-
tance of creating research partnerships with schools. Autism
17(3): 268–280.
Pellicano E (2018) Engaging ‘seldom heard’ individuals in par-
ticipatory autism research. In: Milton D and Martin N (eds)
Autism and Learning Disability Annual, vol. 2. London:
Pavilion Publishing, pp.29–34.
Pellicano E and Stears M (2011) Bridging autism, science and
society: moving towards an ethically informed approach to
autism research. Autism Research 4(4): 271–282.
Pellicano E, Crane L, Gaudion K, et al. (2017) Participatory
Autism Research: A Starterpack. London: UCL Institute of
Education.
Pellicano E, Dinsmore A and Charman T (2014a) Views on
researcher-community engagement in autism research in
the United Kingdom: a mixed-methods study. PLoS ONE
9(10): e109946.
Pellicano E, Dinsmore A and Charman T (2014b) What should
autism research focus upon? Community views and priori-
ties from the United Kingdom. Autism 18(7): 756–770.
Pellicano E, Ne’eman A and Stears M (2011) Engaging, not
excluding: a response to Walsh et al. Nature Reviews
Neuroscience 12(12): 769–769.
Pellicano L, Dinsmore A and Charman T (2013) A Future Made
Together: Shaping Autism Research in the UK. London:
Institute of Education.
Raymaker D and Nicolaidis C (2013) Participatory research with
autistic communities: shifting the system. In: Davidson J
and Orsini M (eds) Worlds of Autism: Across the Spectrum
of Neurological Difference. Minneapolis, MN: University
of Minnesota Press, pp.169–190.
Ridout S (2014) More than picture-making: reflecting on collage
as a narrative tool for opening discourse on the involve-
ment of autistics in autism research. Autonomy: The Critical
Journal of Interdisciplinary Autism Studies 1(3). Available
at: http://www.larry-arnold.net/Autonomy/index.php/auton-
omy/article/view/AR14/html
Ridout S (2018) Autism and Mental Well-being in Higher
Education: A Practical Resource for Students, Mentors and
Study Skills Support Workers. Hove: Pavilion Publishing
and Media.
Ridout S and Edmondson M (2017) Cygnet mentoring pro-
ject: combined experiences from a mentor and a mentee.
Autonomy: The Critical Journal of Interdisciplinary Autism
Studies 1(5). Available at: http://www.larry-arnold.net/
Autonomy/index.php/autonomy/article/view/AR20/html
Rose D (2003) Collaborative research between users and pro-
fessionals: peaks and pitfalls. The Psychiatrist 27(11):
404–406.
Sasson NJ, Faso DJ, Nugent J, et al. (2017) Neurotypical peers
are less willing to interact with those with autism based on
thin slice judgements. Scientific Reports 7: 40700.
Scott-Barrett J, Cebula K and Florian L (2018) Listening to
young people with autism: learning from researcher expe-
riences. International Journal of Research & Method in
Education. Epub ahead of print 16 April. DOI: 10.1080/
1743727X.2018.1462791.
Sheppard E, Pillai D, Wong GTL, et al. (2016) How easy is it to read
the minds of people with autism spectrum disorder? Journal of
Autism and Developmental Disorders 46(4): 1247–1254.
Silverman C and Brosco JP (2007) Understanding autism: par-
ents and paediatricians in historical perspective. Archives of
Paediatrics & Adolescent Medicine 161(4): 392–398.
Sinclair J (2013) Why I dislike ‘person first’ Language.
Autonomy, The Critical Journal Of Interdisciplinary Autism
Studies, 1(2). Retrieved from http://www.larry-arnold.net/
Autonomy/index.php/autonomy/article/view/OP1
Stahmer AC, Aranbarri A, Drahota A, et al. (2017) Towards a
more collaborative research culture: extending translational
science from research to community and back again. Autism
21: 259–261.
Tritter JQ and McCallum A (2006) The snakes and ladders of
user involvement: moving beyond Arnstein. Health Policy
76(2): 156–168.
Wright CA, Wright SD, Diener ML, et al. (2014) Autism spec-
trum disorder and the applied collaborative approach: a
review of community based participatory research and par-
ticipatory action research. Journal of Autism 1(1): 1–11.
... An important study in the UK showed that autistic people and their families did not perceive research outcomes as leading to concrete improvements in their lives (Pellicano, Dinsmore, and Charman, 2014). To address this issue, attempts have been made to develop research processes in which autistic people take a more active part (e.g., Fletcher-Watson et al., 2018). ...
Article
Autism is a neurodevelopmental condition characterized by difficulties in social perception, cognition, and interaction. Differences to non-autistic peers start appearing early in development and are associated with altered brain structure and functioning. This chapter begins with an overview of research on theory of mind and empathy, discussing how skills in these domains present in high-functioning autism. Findings indicate that, across development, a sizable portion of autistic people learns to compensate for specific difficulties. Yet, challenges in social interaction continue to impact their level of functioning in everyday life throughout adulthood. We describe how research has attempted to introduce more interactive experimental settings, and how this interactive turn has improved our understanding of autism in contexts closer related to real life. Finally, we discuss the Bayesian brain account of autism as a computational framework that explains social difficulties in terms of domain-general perceptual, cognitive, and biological mechanisms. We conclude by pointing to recent developments such as participatory research and the mining of larger longitudinal datasets as ways to make autism research more effective in improving autistic people’s lives.
... In line with the collaborative approach, research which is participatory or co-produced may be in a better position to ensure people with intellectual disabilities contribute to the management of ethical issues. Within participatory approaches, the traditional power imbalances between researcher and researched are undermined as people with intellectual disabilities become involved in all stages of the research processtheir views incorporated into what research gets done, how it gets done and how it is implemented (Fletcher-Watson et al. 2019). Therefore, discussions with co-researchers with intellectual disabilities regarding how to manage the reporting of disclosures could take place both before the research commences and as any issues arise thus unsettling the power a researcher may otherwise hold over the situation. ...
Article
Full-text available
This article draws attention to the ethical complexity researchers may be confronted with during fieldwork should an adult participant with intellectual disabilities disclose that harm or an illegal activity is occurring or has occurred in the past. The need to gain ethical approval and the positioning of people with intellectual disabilities as vulnerable within ethics review procedures can result in the adoption of paternalistic approaches as researchers are encouraged to break confidentiality to report concerns to other professionals. Whilst this may fulfil a researcher’s duty to ensure no harm occurs to participants, if it takes place against the participant’s wishes it may also violate participant autonomy, reinforce unequal relations of power, and may unwittingly contribute to subsequent harm occurring. Whilst the article begins from our experience as two UK-based researchers working with people with intellectual disabilities, it draws on existing literature and guidelines to expose the ethical tensions which may be encountered. It is intended that the paper acts as a starting point for researchers wishing to reflect on their practice and ethical decision-making, whilst contributing to wider debates on the position of people with intellectual disabilities within society.
Article
Young adults with autism spectrum disorder (ASD) typically benefit from individually-designed interventions to engage in reciprocal conversation. We used a multiple baseline across participants design to evaluate the effects of a technology-based self-monitoring application (i.e., I-Connect) and visual supports to teach question asking skills to three males with ASD, ages 21–26. Participants selected community locations to participate in structured conversations with peers that were audio recorded. All participants demonstrated an immediate effect to increase their number of questions asked when using I-Connect to self-monitor. However, participant responding varied when visual supports were added. Maintenance also varied across participants. Findings indicated existing evidence-based practices for learners with ASD, such as self-monitoring and visual supports, can be combined in socially valid ways. Implications and suggestions for future research related to teaching conversation skills for young adults with ASD are discussed.
Article
Full-text available
Molecular autism research is evolving toward a biopsychosocial framework that is more informed by autistic experiences. In this context, research aims are moving away from correcting external autistic behaviors and toward alleviating internal distress. Autism Spectrum Conditions (ASCs) are associated with high rates of depression, suicidality and other comorbid psychopathologies, but this relationship is poorly understood. Here, we integrate emerging characterizations of internal autistic experiences within a molecular framework to yield insight into the prevalence of psychopathology in ASC. We demonstrate that descriptions of social camouflaging and autistic burnout resonate closely with the accepted definitions for early life stress (ELS) and chronic adolescent stress (CAS). We propose that social camouflaging could be considered a distinct form of CAS that contributes to allostatic overload, culminating in a pathophysiological state that is experienced as autistic burnout. Autistic burnout is thought to contribute to psychopathology via psychological and physiological mechanisms, but these remain largely unexplored by molecular researchers. Building on converging fields in molecular neuroscience, we discuss the substantial evidence implicating mitochondrial dysfunction in ASC to propose a novel role for mitochondrial allostatic load in the relationship between autism and psychopathology. An interplay between mitochondrial, neuroimmune and neuroendocrine signaling is increasingly implicated in stress-related psychopathologies, and these molecular players are also associated with neurodevelopmental, neurophysiological and neurochemical aspects of ASC. Together, this suggests an increased exposure and underlying molecular susceptibility to ELS that increases the risk of psychopathology in ASC. This article describes an integrative framework shaped by autistic experiences that highlights novel avenues for molecular research into mechanisms that directly affect the quality of life and wellbeing of autistic individuals. Moreover, this framework emphasizes the need for increased access to diagnoses, accommodations, and resources to improve mental health outcomes in autism.
Article
Full-text available
Introduction This study aims to investigate self-perceived quality of life, daily functioning, and the use of compensatory strategies in emerging adults with autism ¹ . Methods and analysis Participants will be recruited from the Lillehammer Neurodevelopmental 10-year follow-up study (LINEUP), with the aim of 15 individual in-depth interviews. Subsequently, two focus groups with clinicians will be invited to reflect on the themes found in the individual interviews. All interviews will be recorded and analyzed using reflexive thematic analysis. Ethics and dissemination The study is approved by the Regional Committee for Medical Research Ethics in South-East Norway. The findings will be disseminated to academic and clinical audiences through journal articles and conference presentations. To reach the broader autistic and autism communities, the findings will be shared with the Autism Society at national and local meetings, in their membership magazine, and on their social media channel.
Article
Full-text available
Introduction While not all autism research is ableism, autism researchers can be ableist, including by talking about autistic people in sub-human terms (dehumanization), treating autistic people like objects (objectification), and making othering statements which set autistic people apart from non-autistic people, and below in status (stigmatization). Method This mixed-method study aimed to investigate how autism researchers construct autistic people and autism research, and to investigate whether including autistic people more in research relates to lower ableism in narratives about autistic people. We used a survey with autism researchers ( N = 195) asking five open-ended questions about autism and autism research, as well as demographics, career length, contact with autistic people (familial and non-familial) and degree to which researchers involve autistic people in their research. We used content analysis to categorize narratives used by autism researchers and cues for ableism (dehumanization, objectification, and stigmatization). We then used binary-logistic regression to identify whether narrative or higher inclusion of autistic people predicted fewer ableist cues, controlling for career length and connections to autistic people. Results and discussion Using medicalized narratives of autism predicted higher odds of ableist cues compared to employing social model or neutral embodiment narratives. Greater inclusion of autistic people in research predicted significantly lower odds of ableist cues, while controlling for other contact with autistic people and career length. Next, we used reflexive thematic analysis to analyze researcher’s perceptions of autistic people and autism research. Narratives reflected core ideological disagreements of the field, such as whether researchers consider autism to be an intrinsic barrier to a good life, and whether researchers prioritize research which tackles “autism” versus barriers to societal inclusion for autistic people. Instrumentality (a form of objectification) was key to whether researchers considered a person to have social value with emphasis revolving around intellectual ability and independence. Lastly, language seemed to act as a tool of normalization of violence. Researchers relied on an amorphous idea of “autism” when talking about prevention or eradication, potentially because it sounds more palatable than talking about preventing “autistic people,” despite autism only existing within the context of autistic people.
Article
In this paper, I explore how autistic behaviors are rendered Othered transgressive acts in general research and in the figured world of occupation. I assess how the normalization agenda, which aims to condition autistic people into appearing abled, is associated with endemic disparities. I contend that occupational science has often countered anti-autistic stigma. However, I analyze how the field has perpetuated ableism by replicating normalization ideology and through its silence on the occupational significance of autistic behaviors. To contrast dominant assumptions, I examine autistic ways of being within occupational frameworks. I propose that the field can foster inclusion, rethink its figured worlds, and recognize autistic behaviors to promote social responsiveness. I argue these steps are ethically imperative as evidence on the harms of normalization accumulates.
Article
Communities have first-hand knowledge about community issues. This study aims to improve the efficiency of social-technical problem-solving by proposing the concept of "artificial process intelligence," based on the theories of socio-technical decision-making. The technical challenges addressed were channeling the communication between the internal-facing and external-facing 311 categorizations. Accordingly, deep learning models were trained on data from Kansas City's 311 system: (1) Bidirectional Encoder Representations from Transformers (BERT) based classification models that can predict the internal-facing 311 service categories and the city departments that handle the issue; (2) the Balanced Latent Dirichlet Allocation (LDA) and BERT clustering (BLBC) model that inductively summarizes residents' complaints and maps the main themes to the internal-facing 311 service categories; (3) a regression time series model that can predict response and completion time. Our case study demonstrated that these models could provide the information needed for reciprocal communication, city service planning, and community envisioning. Future studies should explore interface design like a chatbot and conduct more research on the acceptance and diffusion of AI-assisted 311 systems.
Article
Lay abstract: Currently, our understanding of the adolescent period for autistic youth has relied on the expertise of researchers, clinicians, parents, and teachers, yet rarely involves their unique first-person experiences. Our study attempted to understand the experiences and perspectives of autistic adolescents in their home, school, and community environments using the Autism Voices protocol, a semi-structured interview specifically designed and tailored to engage with autistic youth with various language and intellectual levels. The analysis of the 31 interviews conducted with autistic adolescents aged 11-18 years highlighted six themes: (1) autistic identities, (2) thinking about the future, (3) seeking social connection on their own terms, (4) seeking autonomy, (5) school as both a stressor and social facilitator, and (6) experiences of stress and anxiety. These results highlight similarities and differences in the adolescent experiences of autistic youth compared to their typically developing peers. Our findings suggest that by removing assumptions about the experiences of autistic individuals and investing in inclusive interview methods, we can faithfully capture the experiences of autistic youth regardless of their communication and cognitive abilities. Being able to capture and amplify these diverse voices will facilitate the active involvement of autistic communities in research and clinical and policy decisions that impact them.
Article
Full-text available
In this article, we argue that the exclusion of autistic people from meaningful involvement in research is both ethically and epistemologically problematic, and constitutes a significant barrier to research impact. By the term 'meaningful', we refer to the inclusion of different autistic voices not merely as sources of empirical material, but as active participants in the production of knowledge on autism. We discuss two trends in research that are of concern: firstly, the failure to explore and engage fully with the lived experiences of participants in social research; secondly, imposition of problematic narratives on autistic experiences, linked to partial or complete absence of engagement with the diverse work of autistic authors. We conclude by pointing to some contemporary developments and intellectual exchanges that serve as exemplars which increase the ethical and epistemological integrity of research on the lived experiences of autistic people.
Article
Full-text available
Research with adults on the autism spectrum is as yet limited in scope and quality. The present study describes quality of life (QoL) of a large sample of autistic adults in the UK and investigates characteristics that may be predictive of QoL. A total of 370 autistic adults from the Adult Autism Spectrum Cohort‐UK (ASC‐UK) completed the WHOQoL‐BREF, and the Social Responsiveness Scale (SRS, autism symptom severity), along with the ASC‐UK registration questionnaire giving information on mental health and their life situation. QoL for autistic adults was lower than for the general population for each WHOQoL domain. Younger participants reported higher QoL than older participants in psychological and environment domains. Males reported higher physical QoL than females, and females reported higher social QoL than males. Significant positive predictors of QoL were: being employed (physical QoL), receiving support (social and environment QoL), and being in a relationship (social QoL). Having a mental health condition and higher SRS total score were negative predictors of QoL across all four domains. Autistic adults require access to effective mental health interventions, and informal and formal support for their social difficulties, to improve their quality of life. Autism Res 2018. © 2018 The Authors Autism Research published by International Society for Autism Research and Wiley Periodicals, Inc. Lay summary There has been limited research into the lived experience of autistic adults. Using the World Health Organization quality of life measure, we found that autistic people (370) in the UK reported their quality of life to be lower than that of the general population. Better quality of life was associated with being in a relationship; those with a mental health condition had poorer quality of life. This research suggests some ways in which autistic people can be helped to improve their quality of life.
Article
Full-text available
Accurate measurement of quality of life (QoL) is important for evaluation of autism services and trials of interventions. We undertook psychometric validation of the World Health Organisation measure—WHOQoL-BREF, examined construct validity of the WHO Disabilities module and developed nine additional autism-specific items (ASQoL) from extensive consultation with the autism community. The sample of 309 autistic people was recruited from the Adult Autism Spectrum Cohort-UK. The WHOQoL-BREF had good psychometric properties, including criterion, convergent, divergent and discriminant validity. The WHO Disabilities module showed adequate construct validity and reliability. The ASQoL items form a unitary factor of QoL, with one global item. Future studies can use the WHO measures alongside the ASQoL items to measure QoL of autistic people. Electronic supplementary material The online version of this article (10.1007/s10803-017-3402-z) contains supplementary material, which is available to authorized users.
Article
Full-text available
Engagement with stakeholders is an essential part of the research process. This is particularly the case for early autism research with infant cohorts and their families, where a range of ethical issues are pertinent. Here, we report on a large survey of parents who have a child on the autism spectrum (n = 1040) which specifically probed attitudes to early autism research. The large majority of parents showed positive attitudes overall, and these were associated with greater access to services, higher service quality ratings and higher rates of intellectual disability among their children. Parents valued the scientific goals of research, but half of parents also reported that an intervention component would be an essential prerequisite for them to participate in research. If enrolled in a study, parents were positive about most commonly used measures though less favourably disposed towards brain scans for children. They valued direct contact with the research team and openness in data sharing. We interpret our findings in terms of lessons for the early autism research community and for stakeholder engagement projects.
Article
Full-text available
Numerous style guides, including those issued by the American Psychological and the American Psychiatric Associations, prescribe that writers use only person-first language so that nouns referring to persons (e.g. children) always precede phrases referring to characteristics (e.g. children with typical development). Person-first language is based on the premise that everyone, regardless of whether they have a disability, is a person-first, and therefore everyone should be referred to with person-first language. However, my analysis of scholarly writing suggests that person-first language is used more frequently to refer to children with disabilities than to refer to children without disabilities; person-first language is more frequently used to refer to children with disabilities than adults with disabilities; and person-first language is most frequently used to refer to children with the most stigmatized disabilities. Therefore, the use of person-first language in scholarly writing may actually accentuate stigma rather than attenuate it. Recommendations are forwarded for language use that may reduce stigma.
Article
Full-text available
It is both epistemologically as well as ethically problematic if the autistic voice is not heard in relation to social scientific research seeking to further develop knowledge of autism. Ever since autism first emerged, it has remained medicalised and almost exclusively the preserve of non-autistic researchers. More recently, autistic individuals have begun to contribute to autism research. However, the vast majority of research in autism is still undertaken on autistic people, rather than with them, and is often not concerned with improving the day-to-day lives of people with autism. We discuss the concepts of participatory research and emancipatory research before presenting a draft framework for what we regard as truly inclusive research in autism. Our proposals are firmly based on ideas developed by the members of a university-based group of autistic adults (the Asperger’s Consultation Group) as well as the knowledge and experience of the other contributors.
Article
This study explores the opportunities and dilemmas that have been encountered by researchers seeking the views of young people with autism. Twelve researchers were interviewed about their experiences in this field. Through exploration of the complex methodological and ethical issues that they encountered, this study aims to better understand how researchers can improve the way they listen to, and engage with, the views of children and young people with autism. This article discusses four themes that emerged from the interviews: power dynamics; building rapport; communication; and meaningful processes and outputs.
Article
There is a high incidence and prevalence of mental health problems among young people, with several barriers to help-seeking noted in this group. High rates of mental health problems have also been reported in children and adults on the autism spectrum. Taken together, young autistic people may be a particularly vulnerable group when it comes to mental health. Yet, there has been remarkably little work on the mental health needs and experiences of young autistic adults (16–25 years). Adopting a community-based participatory research (CBPR) approach – in which academic researchers and young autistic adults collaborated in an equitable research partnership – we explored young autistic people’s experiences of mental health problems and their perspectives on the support they sought, if any, for these problems. A total of 130 young autistic adults took part in the research: 109 completed an online survey and 21 took part in detailed interviews. The results highlight how young autistic people find it difficult to evaluate their mental health, experience high levels of stigma and often face severe obstacles when trying to access mental health support. The findings also demonstrate how listening to – and learning from – young autistic people is crucial in ensuring that their mental health needs are met.