Whose Agenda? Who Knows Best? Whose Voice?' Co-Creating A Technology Research Roadmap With Autism Stakeholders

Disability & Society
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‘Whose agenda? Who knows best? Whose voice?’

Co-creating a technology research roadmap with
autism stakeholders
Sarah Parsons, Nicola Yuill, Judith Good & Mark Brosnan
To cite this article: Sarah Parsons, Nicola Yuill, Judith Good & Mark Brosnan (2019): ‘Whose
agenda? Who knows best? Whose voice?’ Co-creating a technology research roadmap with autism
stakeholders, Disability & Society, DOI: 10.1080/09687599.2019.1624152
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DISABILITY & SOCIETY
https://doi.org/10.1080/09687599.2019.1624152
‘Whose agenda? Who knows best? Whose voice?’

Co-creating a technology research roadmap
with autism stakeholders
Sarah Parsonsa, Nicola Yuillb, Judith Goodc and Mark Brosnand
a
Centre for Research in Inclusion, Southampton Education School, University of Southampton,
Southampton, UK; bCentre for Research in Cognitive Science, School of Psychology, University
of Sussex, Brighton, UK; cSchool of Engineering and Informatics, University of Sussex,
Brighton, UK; dCentre for Applied Autism Research (CAAR), Department of Psychology,
University of Bath, Bath, UK
ABSTRACT ARTICLE HISTORY

Technologies play vital roles in the learning and participa- Received 1 October 2018
tion of autistic people and yet have mostly been concep- Accepted 23 May 2019
tualised according to a medical model of disability. In this
KEYWORDS
stakeholder review, the comments of 240 participants from
Autism; technology;
a two-year seminar series focusing on autism and technol- participatory research;
ogy were analysed to co-construct an understanding of co-construction;
how research could develop more inclusively. Our socio-cul- stakeholders
tural analysis shows that stakeholders were very positive
about the roles that technologies can play in many areas of
life, but that these technologies need to be developed and
evaluated according to the needs and preferences of autistic
people and their families. We propose an inclusive common
social framework for research based on the core themes of
social inclusion, perspectives, and participation and agency.
Such a framework requires the field to recognise that some
current practices are exclusionary and that a commitment
to action is needed in order to make positive changes.
Points of interest
This article presents a new way of reviewing and producing evidence
about autism and technology research.
Over 240 people took part in a series of seminars over two years. The
participants included autistic people, parents and families, teachers,
business leaders, research students, research funders, and academics.
This review is based on the comments of participants gathered using
post-it notes at each of the seminars.
CONTACT Sarah Parsons [email protected]

ß 2019 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group
This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://
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provided the original work is properly cited.
2 S. PARSONS ET AL.
The analysis of the comments was done in a very careful and

detailed way.
Research in autism and technology needs to think differently by recog-
nising and respecting a range of views from people with different per-
spectives and experiences.
Thinking differently means doing research differently to work in more
inclusive and participatory ways.
Introduction
With computers a newly autism-compatible environment has emerged in the late
twentieth century. People on the autistic spectrum have as much to contribute in
this new environment as anyone. (Murray and Lesser 1999, n.p. as quoted in
Davidson 2008, 801)
This quote encapsulates three big themes relating to the use of technology
by children and adults on the autism spectrum, which contextualise the
rationale for this article. The first big theme is the emergence of a field of
research and practice that is interested in the uses and application of tech-
nologies by and with autistic people,1 which really started to gain traction
from the late 1990s onwards. Ploog et al.’s (2013, 302) review of computer-
assisted technologies for supporting social communication in children on the
autism spectrum shows that while there was some emergent interest in this
area in the 1980s as personal computers first entered more mainstream use,
there was an exponential increase in published research papers in the late
1990s/early 2000s focusing on ‘autism þ computers’. This strong trend shows
no sign of diminishing, not least in the context of new and emerging tech-
nologies (Kientz et al. 2013). Against this backdrop, we reflect on what we
have learned from the application of various technologies over the past few
decades in order to understand how the field has evolved and the opportu-
nities this affords for where it could develop next.
The second big theme is the notion that computers might be ‘autism
compatible’. This claim gives rise to legitimate questions about whether and
why such compatibility might exist, and what this means for individuals, fam-
ilies, practice, and research. Certainly, and related to the strong surge in
research interest identified by Ploog et al. (2013), there are often-repeated
claims in the literature that some people on the autism spectrum have an
‘affinity’ for computers (and technology more broadly) (for example, Durkin
2010; Mineo et al. 2009), mainly because computers respond predictably to
inputs in comparison to the unpredictability of human responses (for
example, Swettenham 1996; Silver and Oakes 2001). Researchers in the aut-
ism field have regularly used this reported affinity as the basis for justifying
technology as an appropriate medium through which to design and
DISABILITY & SOCIETY 3
implement targeted psychosocial and behavioural interventions (for over-

view, see Kientz et al. 2013). In other words, technology is typically construed
as a tool that can be applied to ameliorate or reduce the problematic behav-
iours of some autistic participants (for example, Boucenna et al. 2014), or for
addressing ‘core deficits’ related to diagnostic criteria; for example, social
behaviours (for example, Grynszpan et al. 2014) and communication (for
example, Boyd, Hart Barnett, and More 2015). It is important to examine
whether this focus in research remains appropriate given the extensive litera-
ture available in the field, the evolution of technologies over time, and the
more recent focus on neurodiversity and strengths rather than deficits in aut-
ism research (see later ‘Digital bubbles’ section).
Most of the many literature reviews tend to focus either on specific tech-
nologies, such as tablets, assistive devices, Virtual Reality, or social robots (for
example, Schlosser and Koul 2015; Lorah et al. 2015; Parsons 2016; Pennisi
et al. 2016), and/or on the rehabilitative efficacy or effectiveness of using
technology to target specific areas of difficulty (for example, Den Brok and
Sterkenburg 2015). In short, there tends to be a compartmentalised
approach emphasising the technology itself or the kinds of skills that the
technology is argued to support, rather than research that closely examines
and critiques the integration of the two. Commonly, such reviews report that
the applications of technology for addressing core difficulties in the social-
communicative domains of autism show promise, but that there are meth-
odological weaknesses in the evidence base (e.g. small samples, lack of com-
parison or control groups) and more research is required (for example, Wass
and Porayska-Pomsta 2014; Kientz et al. 2013). Consequently, findings from
the aforementioned reviews reveal that the field tends to be rather piece-
meal, with a lack of follow-up studies or consideration of how emerging
themes might be integrated. Therefore, rather than adding yet another
review reporting similar findings and outcomes, our aim is to step back and
reflect, with stakeholders, on ways to enable research to be more cumulative,
integrated, and mutually informing of practice.
Following directly from this point is the third big theme introduced in the
opening quote, which is that people on the autism spectrum have an equal
role to play in the development of the autism and technology field. This is a
very interesting and powerful proposition but, perhaps because of the
rehabilitative focus on technology use and application highlighted earlier,
one that has not yet been pursued to the same extent. In other words, the
dominant approach is one in which research has been typically done ‘on’
autistic participants, rather than ‘with’ them (cf. Oliver 1992, 2013). This is a
traditional knowledge transfer model of research (Guldberg 2017), which pri-
oritises and values particular and formalised ‘ways of knowing’ from the aca-
demic community (Parsons et al. 2015). Consequently, the research evidence
4 S. PARSONS ET AL.
base on the role and uses of technologies for autistic people is rather narrow
and instrumental in nature, focusing mostly on improvements in skill acquisi-
tion or development based on positivist or post-positivist paradigms, and
positioning technology mainly as a cognitive or behavioural prosthesis in
mainstream contexts (Spiel, Frauenberger, and Fitzpatrick 2017). This is prob-
lematic because it means that there is a high risk of excluding the voices
and experiences of those who, by definition, experience the world differently
from those without autism (i.e. ‘neurotypicals’; Silberman 2015). As
Davidson notes:
Performance in mainstream environments is restricted and restrictive by definition,
and autistics have long felt pressure to study and copy majority social skills they do
not ‘naturally’ possess. (2008, 795)
Indeed, Davidson (2008) discusses how communication online has created

new opportunities and valuable spaces for the social inclusion and cultural
expression and representation of at least some autistic people, thereby chal-
lenging the dominant rehabilitative or clinical thinking in relation to technol-
ogy applications.
Within this context, we therefore sought to provide a different kind of
review for the field, based on the participation and knowledge of a range of
stakeholders, including autistic people, families, practitioners, and academic
researchers from different disciplines. This knowledge was co-constructed
through a seminar series that took place over two years in the United
Kingdom and aimed to explore, and critically reflect on, the idea of ‘digital
bubbles’ relating to the development, application and investigation of tech-
nology use for, and by, children, young people and adults on the autism
spectrum. What is meant by ‘digital bubbles’ is discussed next, followed by
our foci for the seminars where we addressed different ‘bubbles’ in turn. This
article analyses the stakeholder perspectives on these ‘bubbles’ to provide a
basis for future directions for the field.
‘Digital bubbles’
We use the term ‘digital bubbles’ to describe the tendency for digital tech-
nology to become, or be perceived as, an isolating bubble that separates
people from reality (consider the use of smartphones in everyday public
spaces). We apply it here to refer to the ideas and practices that we have
played roles in or witnessed as autism and technology researchers over
many years (see Table 1 for a summary). First, media headlines have raised
concerns about children’s use of personal technologies including tablet PCs,
smartphones, and games – for example:
The five signs your child is addicted to their iPad – and how to give them a ‘digital
detox’. (Mail Online 2013)
Table 1. Summary of the seven seminars in the series ‘Innovative Technologies for Autism:
Critical Reflections on Digital Bubbles’.
Date and Main focus or Related
Seminar location question(s) addressed publication
Seminar 1: The University of Whether technologies create a social bubble Parsons
Social Bubble Southampton, and, if so, do they increase social et al. (2015)
November 2014 isolation, or provide helpful ways of
engaging with other people in a
remote way?
Seminar 2: The University of Sussex, How can developmental psychology inform Yuill
Developmental March 2015 approaches to understanding of autism et al. (2015)
Bubble (and approaches to intervention)?
Seminar 3: The University of Bath, What are the useful strategies as well as Brosnan
Methodological July 2015 challenges that have been found in et al. (2016)
Bubble developing, researching, and evaluating
technologies for autism?
Seminar 4: The University of How do different kinds of technology Good
Technology Bubble Southampton, support interaction and communication? et al. (2016)
November 2015 What are the benefits and costs of the
development and use of different types
of innovative technologies (e.g. virtual
reality; tangible devices;
augmented reality)?
Seminar 5: The University of Sussex, What is it that we are trying to achieve with Parsons
Disciplinary Bubble March 2016 technology and how can we collaborate et al. (2017b)
constructively across these disciplines to
realise our goals?
Seminar 6: The University of Bath, What can we learn from research being Brosnan
Diversity Bubble July 2016 conducted with other groups of users and et al. (2017)
how might awareness of such diversity
inform a wider agenda of social inclusion?
Cumberland Lodge, What are the key messages arising from Parsons
Seminar 7: The November 2016 across the previous seminars? What have et al. (2017a)
Cauldron of we learned? What research should we be
Many Bubbles doing in the field of autism and
technology, and how should we be
doing it?
Smartphones making children borderline autistic, warns expert. (The

Telegraph 2015)
Similar concerns about a ‘social bubble’ were raised 20 years ago when
researchers started to investigate the potential of technologies for support-
ing the learning of children on the autism spectrum, suggesting that there
was a danger of children becoming addicted (Howlin 1998) and being ‘ …
reluctant to re-enter the real world’ (Latash 1998, 105). Thus, the accusation
– then and now – is that technologies can create ‘digital bubbles’ which sur-
round the user, such that the person is then less engaged with the real
world with potentially detrimental effects. For autistic children who are diag-
nosed based on the existence of profound social and communication difficul-
ties, the implied accusation is even stronger: that by using technologies for
supporting learning we are somehow ‘colluding’ with children’s disability
(Parsons and Mitchell 2002).
However, given the claimed affinity with technologies noted earlier, as
well as cognitive strengths in systemising (the drive to analyse or construct
6 S. PARSONS ET AL.
physical systems) that make technology attractive and motivating for some
autistic people (Baron-Cohen 2012), technology has made possible supports
for some autistic people to engage socially in ways that might otherwise not
be accessible (Benford and Standen 2009; Stendal, Balandin, and Molka-
Danielsen 2011; Brosnan and Gavin 2015). As highlighted by Davidson
(2008), the use of technology by some people on the autism spectrum has
extended beyond the idea of technology as an assistive or augmentative
device, even though the latter still dominates the research literature.
Specifically, the neurodiversity movement has developed almost entirely
online, and mostly comprises autistic self-advocates who propose, support,
and defend the value and importance of autistic identities (Kapp et al. 2013).
Thus, for some, the ‘digital bubble’ that is created through online interaction
is essential and positive through enabling and empowering voice, advocacy,
and participation in ways that would not have been possible without it
(Blume 1997; Davidson 2008; Brosnan and Gavin 2015). Such positivity can
also shade into hyperbole, however; for example, there are many claims that
appear in the media, usually unsupported by research evidence, about the
positive (sometimes miraculous) impacts of technology in the autism field,
creating a sense of ‘mythical practices that are not empirically based’
(Knight, McKissick, and Saunders 2013, 2629):
Minneapolis autism teachers ‘blown away’ by new classroom technology. (Twin
Cities Daily Planet 2012)
Autistic Teen uses Tech to break silence: ‘I escaped my prison’. (NBC Los
Angeles 2013)
Consequently, it is important to provide some balance and to critically

reflect on and evaluate what the technology bubble really means from the
perspectives of stakeholders.
The field of autism and technology irreducibly crosses disciplines, and this
can lead to methodological bubbles, whereby research is multi-disciplinary
and comprises, broadly speaking, the technology domain or the evaluation
domain based within the context of interest (e.g. education, clinical practice,
employment, therapy). Each discipline brings particular theories, practices,
and assumptions to the research, which can be difficult to share and recon-
cile (for example, Zancanaro 2012). However, this means that there is a ten-
dency for researchers to work within their own disciplinary and
methodological ‘bubbles’. In our experience, the field is limited generally by
a lack of communication between the different academic disciplines involved
(e.g. psychology, education, computer science, engineering) and between
academics and the ‘user community’ (Pellicano, Dinsmore, and Charman
2013; Parsons et al. 2009). There is also a tendency for researchers to focus
only on autism research in terms of developmental disability, or only a small
part of the age range of children on the spectrum (for example, Edwards
et al. 2012). Hence, there is limited consideration of wider perspectives and

needs, which could provide useful cross-fertilisation, application, and exten-
sion of ideas and knowledge.
Finally, there is a transformation taking shape within autism research
more widely, which mirrors the progress made through the self-advocacy
movement in the disability field over the past 30 years (Oliver 2013).
Specifically, there are critiques from autistic self-advocates and researchers
(for example, Milton 2014; Robertson 2009) regarding the dominance of the
research agenda by people without autism and, therefore, legitimate ques-
tions raised about the validity and ethical defensibility of such research
(Woods et al. 2018). In a large-scale survey of autistic people and their fami-
lies, as well as academic researchers, Pellicano, Dinsmore, and Charman
(2013) found that there was a mismatch between the kinds of research that
autistic people felt was needed (focusing on high-quality services, education,
and support) versus the focus of most research funding, which was targeted
at brain and biology research. In response, Autistica, a UK research funder,
has recently revised its entire funding strategy based on its own survey of
priorities from the autism community, and state that: ‘We believe that
research should answer questions raised by autistic people and their families’
(Autistica, n.d.).
This is a good example of how some areas of autism research are begin-
ning to move to a research agenda, and a set of research practices that are
more co-constructed and inclusive (Nind 2014). In such research, people who
have traditionally been the subjects of research become partners in the
research such that decision-making is more shared, and research agendas
are more strongly aligned with the needs, interests, and wishes of otherwise
marginalised groups (Chown et al. 2017). Such research requires adopting
different epistemological positions relative to the more traditional knowledge
transfer and exchange models of research (Guldberg 2017; Woods et al.
2018) because the ways in which knowledge is generated are different
(Parsons and Cobb 2014; Rose, Carr, and Beresford 2018), complex, and often
methodologically ‘messy’ (Seale, Nind, and Parsons 2014). Crucially, expertise
through experience is valued as much as formalised knowledge shared and
constructed via traditional research, and so individual perspectives, views,
and experiences are essential ingredients in co-construction (Nind 2014).
These considerations directly informed our ‘digital bubbles’ seminar series
and the curation of stakeholder perspectives that provide the data analysed
in this article.
What follows is an overview of the methodology of the seminars, includ-
ing how data were generated for analysis. We utilise a socio-cultural lens for
the analysis and discuss the findings within a Freireian (1970) conceptual
framework. Freire (1970) challenged the dominance of power in education,
8 S. PARSONS ET AL.
and the reification of practices that exert control and dominance over disad-
vantaged and marginalised people by those in power, to propose radically
different ways of enabling and empowering individuals to transform the
world through their own reflection and action. Specifically, he argued that
leadership in education should be ‘co-intentional’ (1970, 51), in which there
is a more shared understanding and investigation of reality between
‘teachers’ (those who hold more power) and ‘pupils’ (those who hold less
power) that avoids authoritarianism and conformity. The educational focus
adopted by Freire is relevant because we use it here to frame and inform
the learning that we propose would be transformative within this field.
Moreover, technologies offer a very flexible set of tools through which reflec-
tion and action can take place, thereby applying Freire’s analysis to contem-
porary debates.
Research process
We organised seven seminars over 24 months at intervals of roughly three or
four months between November 2014 and November 2016 in the United
Kingdom, each focusing on a digital bubble within the autism and technol-
ogy field. Each of the seminars has been summarised and published in short
papers and the references for these, as well as the main topic of each sem-
inar, are included in the overview presented in Table 1.
Seminars and participants

Participants were asked to sign up to attend the day and were made aware
that places were limited. Including the organisers, we restricted attendance
to a maximum of about 40 people for each seminar in order to facilitate
plenty of discussion on the day. Each seminar included four to five invited
speakers, who were academics, parents, autistic individuals, or practitioners
(and of course, they could have one, some, or all of these identities). Some
speakers, as well as some of the participants, were international (from
Europe, the United States, and Turkey). Other participants were local commu-
nity stakeholders (autistic people, families and carers, professionals, and prac-
titioners), from national and local autism organisations, representatives from
the technology industry, autism research funders, and academic researchers.
Thus, at each seminar there was a mix of people who self-selected for par-
ticipation and those who were invited by the organisers.
In total, 240 participants attended and we supported 50 travel bursaries
to enable postgraduate, early career researchers, and community stakehold-
ers to participate. A particular success of the series was the sustained
involvement of autism stakeholders, and early career and postgraduate
researchers throughout, enabling them to contribute to and participate in

these discussions.
Data collection
Each seminar was scheduled to support group discussion throughout the
day; for example, a 30-minute talk followed by 15-minute discussion in small
groups, and then plenary feedback. During each group discussion, and at
any point during the day, participants (including ourselves as organisers)
were encouraged to write on post-it notes any main points, pertinent com-
ments, or burning questions or issues that arose. They/we would then put
these up on the wall so that a set of comments was generated during the
day and other participants could see what was being written (see Figure 1).
This was a very simple, yet effective, method for generating comments and
feedback as no-one had to contribute orally if they did not want to and no
judgement or prioritisation was made of any comments during the seminar.
Moreover, it was appropriate for our notes and comments to be included in
the mix since this was conceptualised from the beginning of the series as an
opportunity to co-construct our understanding and interpretations of the
field. In short, all contributions were welcome.
These post-it notes were collated at the end of each seminar, and shared
through summaries on the project website (www.digitalbubbles.org.uk),
although these summaries were not systematically organised or analysed.
The post-it notes were an important source of information since they pro-
vided evidence of scrutiny and reflection on the invited talks and ensured
that everyone who attended a digital bubbles seminar had the opportunity
to voice their views or queries, anonymously, if they wished.
Figure 1. Example of post-it notes used to collect comments and feedback during
the seminars.
10 S. PARSONS ET AL.
Analysis
Conceptual framework
Our approach to the analysis drew upon the socio-cultural activity theory
(AT) framework of Engestro €m (1987; extending from Leontiev 1978), which is
rooted in the traditions of Vygotskian social-constructivist understandings of
learning and development. AT considers the people and practices involved
in any system or form of activity as well as aspects of the environment and
culture. Put simply, the theory proposes that human consciousness is located
in everyday practices, which are located within social contexts. An activity is
given meaning by the social context in which it is carried out, and the con-
text comprises both people and artefacts/tools that make up activity systems
(Russell 2004). The AT framework gives prominence to the role of tools as
mediating artefacts that influence and shape thinking and practices. Tools
can be physical (e.g. textbooks, pens, documents) or psychological (e.g. lan-
guage), and the activities of their use are directed towards a particular object
of the activity (e.g. writing a letter, getting to the shops, making yourself
understood). In other words, there are motives that drive mediated activities,
and these activities may result in different outcomes, which in turn shape
thinking and practices. Thus, a particular activity comprises dynamic relation-
ships between people (Subject, Community, Division of Labour), the factors
that constrain or support the activity (Rules), the mediational tools (Tools),
and the Object(s) and Outcome(s) of the activity. These relationships are
depicted in Figure 2, from a conceptualisation by Engestro €m (1987).
Given our current focus, technology represents a very powerful range of
mediating tools that shape social processes in important ways and so AT is a
very useful framework to apply. The AT framework also provides a coherent
approach to analysing data according to the wider socio-cultural lens that
we were interested in through the seminars.
Figure 2. The core structure of a human activity system (Engestr€om 1987, 87).
Table 2. Summary of main findings and key questions and implications for research.
Activity theory Illustrative quotes Key questions Implications for Implications for social
category of analysis Main findings from stakeholders for research research practices and research policy
Subject: whose Much research and thinking ‘Getting the first person What does it mean for Starting point for framing The United Kingdom’s
perspective(s) do we about autism comes from perspective (from people everyone to be social in a research questions should industrial strategy
need to consider, and a ‘neurotypical’ with ASD) about what is technology-enabled world? come from the needs and (Department for Business,
what might those perspective, but we need appropriate to focus on is Where or what is the contexts of autistic people, Energy and Industrial
perspectives reveal to strive for a better really important’ ‘social deficit’ when using their families, and other Strategy 2017) is clear
or mean? understanding of the “’Neurotypical syndrome’ – technology? Where, and stakeholders, rather than about the grand
benefits and limitations of assuming their way is the for whom, is the social only from research challenges that it seeks to
technologies from the right way and that way is isolation? How can Consequently, much address in the United
perspectives of the people superior’ ‘Whose problem technologies be used to stronger collaborative Kingdom, including the
who use them There is a is it? If the person with help non-autistic people working between application of innovative
need to challenge ASD is happy to mainly understand the views, academics and the wider technologies to support
traditional, normative communicate online is this perspectives, and autism community is healthy ageing, and using
assumptions, and start a problem for them?’ ‘How experiences of autistic fundamental for moving artificial intelligence to
from a different place in far is society moving people? Or, what role the field forward (e.g. transform the global
our thinking The towards digital could technologies play in Parsons and economy. Including autistic
assumption that autistic communication and are addressing the ‘double Kovshoff 2019) perspectives and expertise
people may be especially we all within our own empathy problem’ in meeting the challenges
vulnerable or socially social bubble?’ (Milton 2012)? would be a major strength
disadvantaged by (e.g. through the new UK
engaging with Parliament Knowledge
technologies is important Exchange Unit)
to challenge. There are
many benefits reported
and, as for all users, there
should be appropriate and
balanced recognition of
pros and cons
Community: who The involvement of people ‘Users need to understand What are the wider cultural Avoid assumptions of mono- Existing limitations of narrow
is involved? across the diversity of the what academics do, implications for research culturalism, and over- cultural assumptions in the
autism spectrum can bring teachers þ parents should questions and findings generalisation of claims autism evidence base need
many strengths and understand about the with respect to Collaboration should not to be fully acknowledged
creativity to the design implementation’ geographical, linguistic, only recognise and include Actions must be taken to
technology design and ‘How can innovative social, and personal the diversity of the autism broaden representation of
development process technologies be used in diversity (including, age, spectrum, but also seek diverse voices and
11
(continued)
12
Table 2. Continued.
Challenges remain in how different cultures? Can all ethnicity and gender)? comparative, multi-cultural, experiences in research
such diversity can be these methods be What methods and and international and consultations that are
appropriately integrated transferred in a different practices can enable the perspectives Educational commissioned. For
and managed within language environment?’ participation and contexts, especially schools example, the 2019
technology-oriented ‘What does [the] school engagement of the most and teachers, should be consultation on the Autism
participatory design get? It’s not a zoo!’ marginalised and excluded involved as partners in Strategy in England only
S. PARSONS ET AL.
processes Schools and voices? In what ways are research rather than allowed for written
teachers as gatekeepers questions, methods, and positioned as passive responses to online or
and stakeholders require evaluations shaped testers and recipients of it print survey questions
particularly careful through the involvement Autistica.org.uk provides
consideration. Schools of educators from the start an example of how
should not simply be of technology different views are being
construed as testing sites development processes? sought and the under-
for technology developers representation of some
groups in autism research
is being tackled
Division of Labour: how is The diversity of the spectrum ‘Participatory design needs to In what ways can multi- Open, accurate, and reflective Research and project funders
or should the work be should be recognised be creative to include less disciplinary groups, identification of roles, in all sectors can actively
distributed? through acknowledging able children with autism including stakeholders, assumptions, and expertise promote and encourage
the differing perspectives in the process’ ‘Should/can work or interact together is needed Methods need participatory approaches to
that individuals will bring. HFA [high functioning to develop and use to respect a range of project design,
Advocating for, and autism] people advocate technologies for shared preferences, as not development, and
enabling, different for LFA [low functioning purposes? How can we everyone may wish to completion Policies for
perspectives (e.g. by autism] people?’ ‘How can more effectively enable comment or be involved in funding should recognise
parents, older, more we match those who see support, mediation, and everything, or be involved the value of a range of
verbally expressive people) solvable problems with participation through the in the same ways Clear inputs and methodologies
is important, but is not the those who can use of technologies as communication and for supporting wider
same as including first- engineer solutions?’ tools for engagement and clarification of project participation
person perspectives of communication within objectives from the outset,
autistic people Not participatory design? and throughout,
everyone wants to take an are essential
active role in research.
There are other ways of
supporting and
(continued)
Table 2. Continued.
encouraging engagement
and support that do not
pre-suppose or require
co-creation
Rules: what are the Everyone involved will have ‘Programmers as gatekeepers’ What are the needs and Value for money, and impact, The priorities for project
factors that support or different views about the ‘Personalised technology priorities of autistic relevance, and availability development and research
constrain issues that need to be might be excluding’ ‘The individuals and families in for individuals are vital set by funders should
participatory design? addressed All views matter technology clearly has a relation to technology use considerations These explicitly recognise the
and add value, but there role to play – but is it and development? How considerations need to be importance of agendas led
should be appropriate prohibitive due to cost? might these needs and balanced against the push by the autism community
recognition of the need to How can we make it priorities be met through towards innovation and
prioritise the needs and more available?’ the investigation and blue-sky thinking Research
views of autistic people development of existing innovation is important as
and families in deciding and/or readily available well as meeting everyday
research agendas Those technologies? In what needs, and so research
who may be gatekeepers ways can longer-term teams should plan for
within participatory design research horizons (blue-sky ways in which more
processes need to ensure thinking, new experimental (blue-sky)
inclusive, rather than technologies) enable these prototypical approaches
exclusive, approaches The needs and priorities to can be made more
overall cost, as well as the be met? available and accessible for
personalisation, of new everyday use
technologies might be
prohibitive and
exclusionary
Object of the activity: Participatory design of ‘Technology can open doors How can researchers and Participatory design (as a The importance and use of
what technology is technologies in the autism to communication’ practitioners take a wider range of approaches) technologies in everyday
being made, might be field is essential There are ‘Depending on the aim the view of what is happening should be an essential life for many people move
made, and what are many ways in which process may be more within and around the starting point for research beyond narrow economic
the assumptions about technologies can be important than the technology to support e- projects in this field. These interpretations of
what is made enabling, motivating, outcome’ ‘Real life is not inclusion (Abbott 2007)? approaches should intervention or assistance
(and how)? engaging and fun. necessarily distinct from How can technologies be document and value the (see Burch 2018). Fun,
Technologies can support digital life if it has similarly used to enable engagement and play, leisure, and
choice, agency, identity, meaningful experiences!’ connections and development of the friendship are all vital
13
(continued)
14
Table 2. Continued.
individual preferences, and ‘Are traditional scientific interactions with others in process of the design (and aspects of technology use
communication in a range methods such as a range of ways? How can the benefits/challenges that need to be fully
of ways The participation randomised controlled we enable fun, play, experienced therein) as recognised A more
in the process of trials of use here or not?’ creativity, lightness, and much as what is produced inclusive and expansive
technology design and subtlety through the and what the outcomes understanding of this
development may be as development, application, may be Research needs to could be recognised
S. PARSONS ET AL.
rewarding, if not more so, and exploration of more fully recognise and through special
for individuals than the technologies (new and explore the rich variety of educational needs and
more specific outcomes existing)? In what ways ways in which people are disability legislation (for
research teams may hope could broadening our using technologies in their example, Department for
to achieve There is a ideas of positive lives, and broaden out Education/Department of
fundamental engagement and indicators from the narrow focus on Health 2015) that guides
interconnectedness of success enable a more social communication and approaches to support
between uses and holistic understanding of interaction, and skills/ and learning
functions of technologies the person or child? behaviours Research
and the ‘real world’. designs that assume a
Maintaining artificial distinction between
distinctions between ‘digital’ and ‘real’ require
‘digital’ and ‘real’ is critical evaluation
outdated and likely to be
limiting for the field
Outcome: what does the It is important to reflect on ‘How can we better link the What does responsible Work with stakeholders to Commercialisation and
autism and technology whether and how we pool of talent that autistic innovation mean in the generate new frameworks innovation strategies for
field as a whole hope know that what we do people are with the autism and technology for participation and the development of new
to achieve? really makes a difference essential technical and field? How can we more evaluation Adopt and technologies need to be
to people’s lives and engineering roles that they appropriately define, develop more inclusive mindful of the need for
experiences. Those can so aptly fulfil?’ ‘“An identify, and characterise approaches to research responsible innovation and
experiences must be of inclusive common social ‘outcome’ measures that that move away from a ensure that intended
value to those taking part framework” as opposed to matter to individuals, dominance of outcomes for technology
This could be from the an “interventionist medical families, and other decontextualised, one-off use are in line with user
perspectives of individuals model”’ ‘Ethics and stakeholders? How can we experiments towards a needs and preferences.
with autism, parents and responsible innovation’ ensure that the processes more consultative and Commitments to these
families, and practitioners, and purpose of context-aware range of principles can be included
as well as from the participation are valued as methodologies in objectives for delivery
(continued)
Table 2. Continued.
perspectives of much as possible eventual plans (e.g. via Innovate UK
professionals who may ‘outcomes’? Through a [n.d.] strategy) to ensure
wish to use technologies focus on strengths, commitment to action
to support individuals and creativity, and talents,
families in a range of ways what and how could we
Focusing on strengths, design differently?
creativity, talents, and
positive flourishing is very
important for the field
There is a need to think
very carefully and ethically
about what it is that we
are really trying to achieve
with our work, and why
Tools: what technologies Online spaces, including ‘What [technologies] are In what ways are existing Co-design of projects using Policies for shaping the
are being or should be social media, can be people with ASC [autism technologies being used participatory methods is direction of research and
used, developed, powerful for enabling spectrum conditions] really by autistic people, and for vital for informing research innovation need to be
and tested? communication, using?’ ‘Social media – less what purposes? What agendas. These agendas sufficiently context and
friendships, agency, and information, asynchronous. technologies would autistic should consider what and user aware to prioritise
choices Online Face-2-Face people like to see how technologies are where new developments
communication and unpredictability, less developed, and for which currently being used, as are needed and avoid
interactions have value in control’ ‘Is modifying purposes? In what ways well as what is needed or unintended consequences
their own right, and can existing tech better than can technology-based desirable for development of technology withdrawal
also be stimuli for face-to- inventing new tools?’ ‘One interactions and activities Evaluation must be or lack of support (where
face initiation and of a box of tools that can support face-to-face amenable to the range of useful technologies are
interactions Digital and be useful depending on communication, and interactions and uses that already valued by users)
face-to-face individual need’ vice versa? occur within, through, and
communication and ‘Technology can never around the technologies in
interactions are important replace human contact order to really understand
There is a need to and learning. This must be needs, preferences,
consider the features and used carefully with ASD’ benefits, and challenges
uses of existing
technologies in order to
understand the value and
relevance for individuals
15
Practical steps
Following the end of each seminar, all post-it notes were collated and tran-
scribed as a list of individual comments in a single Word document. Each of
these documents was first printed as a hard copy and then uploaded as a
source document to NVivo qualitative data analysis software (QSR
International Pty Ltd. Version 10, 2012). The analysis proceeded according to
a series of steps, designed to be both a reliability and validity check as well
as a collective curation of views and interpretations between ourselves as
seminar organisers and co-authors. The latter was important to try to miti-
gate any dominant voices that may have arisen through the creation of the
post-it notes (including our own) and/or through the early stages of analysis.
The steps of the analysis are summarised in Appendix 1. We next present
the results according to the main AT categories, followed by a discussion of
the overarching interpretive themes from the data, drawing upon
Freire (1970).
Results
The activity system of interest here was the autism and technology field of
research and practice. The findings are summarised under each of the main
AT categories in the following and relate to this field. Some comments were
from autistic people and some not, but we do not and could not separate
these (unless the perspective is clear, as with the first comment). Table 2
provides a summary of the main findings alongside key questions and impli-
cations for research and practice.
Subject: whose perspective(s) do we need to consider, and what might

those perspectives reveal or mean?
This theme explored the relationship between the perspectives, needs, and
experiences of autistic people and those of non-autistic people (i.e. those
who are ‘typically developing’ or ‘neurotypical’). The assumed differences are
keenly experienced by autistic individuals:
‘Neurotypical syndrome’ – assuming their way is the right way and that way
is superior.
However, many participants questioned the nature of this difference and

others considered the extent of such purported differences:
What is social isolation for people with autism? Is this different from social isolation
from neurotypical people?
How far is society moving towards digital communication and are we all within our
own social bubble?
Further, the tendency for there to be a unidirectional focus on who uses

what technology, and for what purposes, was questioned:
Rather than using technology to enhance individuals with ASCs’ [autism spectrum
conditions] understanding of us, can we use technology to enhance our
understanding of them?
When designing technology, it is crucial to consider the full range of

potential stakeholders. This is not simply to ensure that the technology
designed is appropriate; rather, there are much deeper implications in terms
of who sets the agenda for research and technology design in the area, and
who determines what goals we are trying to achieve as a community:
Who knows what is ‘best’ or most ‘appropriate’?
Getting the first person perspective (from people with ASD [autism spectrum
disorder]) about what is appropriate to focus on is really important.
Ensuring that the autistic voice is represented in design decisions was

noted as crucial due to potential sensory issues, as well as differences in
focus and/or motivation. For example, participants raised issues relating to
colour; sounds; preferences for focusing on different aspects of an image,
scene, or object; different ways and tempos of learning; and how anxiety
may influence responses. Thus, the heterogeneity of autism in conjunction
with the aspiration to meet individual needs was recognised as a
major challenge:
If everyone is different, can we make general statements?
The participatory nature of this challenge was further highlighted in relation

to the appropriateness of such a methodology for certain users, either because
of their age or limited interests:
What is it that children bring to the design problem that is so good that
adults don’t?
Community: who is involved?

Participants commented that involving members across the autistic commu-
nity (verbal and minimally verbal; children and adults) as well as the broader
autistic communities (parents, practitioners) within interdisciplinary research
and technology development practices brings many strengths – for example:
creativity of people with autism – ask them to solve problems.
Challenges were also mentioned, including managing constraints (such as

time and resources) across differing priorities from different stakeholders,
which entails careful management of expectation and compromise.
For example:
Users need to understand what academics do, teachers þ parents should

understand about the design implementation.
The complexities of integrating interdisciplinary perspectives can be chal-

lenging for some stakeholders, whose views may need to be represented by
advocates, without resorting to token involvement: ‘“Small steps” vs
“tokenism”?’ Ensuring cultural diversity (ethnicity, class, gender) within the
autistic and broader autism communities is also central to inclusion:
How can innovative technologies be used in different cultures? Can all these
methods be transferred in a different language environment?
Schools represent an environment within which inclusive design

approaches to digital technology are frequently attempted. Within this con-
text, teaching professionals are clearly major stakeholders as well as gate-
keepers. Clarity concerning the benefits that developing digital technology
may bring for learning is crucial for ensuring staff engagement:
How do we support teachers in learning about how different technologies may be
beneficial in supporting collaboration (& learning)?
What does [the] school get? It’s not a zoo!
The digital technologies developed should encourage and enhance inter-

action with the broader community, such as family, friends, and professio-
nals, and should reduce, not enhance, social isolation:
Social isolation can be improved by the use of technology AND someone to
share with.
Division of labour: how is or should the work be distributed?

The central theme was how best to ensure autistic voices are accurately rep-
resented within the design and development of digital technologies, such
that these voices are dominant in determining what is appropriate to focus
on. One intervention, intensive interaction (for example, Nind and Hewett
2012), was mentioned as a good example:
Intensive interaction is about following the lead of the child/person (i.e. the
impetus is the other way around).
Autistic adults relatively rarely engage in the design and development of

digital technologies, and this was noted explicitly:
We have talked a lot about children (þ adolescents) and not much on adults. What
issues from today are relevant in adult population?
Similarly, minimally verbal members of the autistic community rarely take

a direct role within participatory design: ‘PD [participatory design] needs to
be creative to include less able children with autism in the process’. This
raises questions about whether verbal members of the autistic community

are or should be potential advocates for minimally verbal members –
‘Should/can HFA [high functioning autism] people advocate for LFA [low
functioning autism] people?’ – or whether parents are in a better position to
be an advocate for their minimally verbal children. Identifying and communi-
cating what is possible is crucial, as well as drawing upon relevant expertise:
How can we match those who see solvable problems with those who can
engineer solutions?
One solution is to support key stakeholders or users of technology and

research (e.g. parents, teachers, and autistic people) to be active contribu-
tors, whilst also being sensitive that this may not be an aspiration, or desir-
able role, for some.
Rules: what are the factors that support or constrain participatory design?
A participatory design process enables ideas, suggestions, and perspectives
to be integrated, developed, and dropped. Typically, someone who has initi-
ated the process (such as a researcher who has been awarded funds though
a funder) will lead on the coordination of the process. The issues to be
addressed within projects are also often determined by researchers, rather
than the wider autistic community, leading to genuine questions about
appropriate representation and contribution. This includes acknowledgement
that parents, practitioners, clinicians, and researchers all have different rela-
tionships with members of the autistic community and may have different
perspectives on what issues need to be addressed. These, in turn, may differ
from the views of autistic people themselves:
Whose agenda? Who knows best? Whose voice?
Programmers as gatekeepers.
Tensions were also highlighted between the value of individual and

personalised solutions and whether these could support inclusion:
Personalised technology might be excluding.
Everyone is an individual. Does 1:1 technology isolate individuals?
Thinking about how technology can be facilitative and enabling for autis-
tic people, there is limited value in designing and developing technologies
that are unaffordable. Cost is a major consideration to ensure that the autis-
tic community and related professions can access the technologies which
they have helped to design and develop:
The technology clearly has a role to play – but is it prohibitive due to cost? How
can we make it more available?
In addition, training to use technologies can also be a crucial determinant

of successful uptake of the technology:
Need of training for families and professionals to use tech to full potential not toys.
Object of the activity: what technology is being made, or might be made,

and what are the assumptions about what is made (and how)?
Reflecting many of the comments already noted, participants were clear that
one of the main objects of activity within the autism and technology field
should be participatory design itself. The importance of technology for
expression and engagement was also a very common thread. Comments
mentioned motivation and many related terms such as social communica-
tion, interaction, encouragement, wishes, opportunities, freedom, and choices
(including the choice not to engage). The power of technology to support
communication in a variety of ways featured strongly here:
Technology can open doors to communication.
Individuality was again highlighted as a key aspect that needs to

addressed by the field, with personal, individual, and differentiation being
mentioned in almost every comment coded within this category.
Comments also highlighted different aspects of participation and process;
for example, placing value on the experience of being involved in the
development and design of ideas and activities, rather than only on the
outcomes for learning that may or may not be supported by the techno-
logical tool:
Depending on the aim the process may be more important than the outcome.
One of the largest categories regarding the object of the autism and tech-
nology field raised questions about the validity of fundamental assumptions
that are typically drawn, notably the real/virtual distinction and its relevance
or redundancy:
Real life is not necessarily distinct from digital life if it has similarly meaningful
experiences!
How do we measure transfer of skills from the lab to the world?
Does communication transfer across all environments? Should we take our bubble
with us?
Comments also related to whether there is a ‘right’ way to interact, with

technology and with each other, and whether a ‘technology’ versus
‘everything else’ distinction can or should be made. Some questioned
whether technology can compensate for, facilitate, or replace ‘real’ interac-
tions: ‘Much more important as a tool for facilitating human – human inter-
action’. This category also included the difficulty of evaluating interventions
and designs, and how we know whether and why an intervention might
have helped: ‘are traditional scientific methods such as randomised con-
trolled trials of use here or not?’
Outcome: what does the autism and technology field as a whole hope
to achieve?
The need to respect and reflect autistic skills and strengths emerged as an
important issue. There is often a focus on the significant challenges inherent
in the field; for example, how to address the high unemployment rates and
underemployment of autistic people (for example, Baldwin, Costley, and
Warren 2014). Without denying these challenges, a focus on strengths con-
siders how to prioritise the invaluable contributions that autistic people can
make to the development of new technologies:
How can we better link the pool of talent that autistic people are with the essential
technical and engineering roles that they can so aptly fulfil?
When looking at ways in which technology use can become more wide-
spread, it is important to start at the design stage, considering how ideas
move from concepts to reality. Once developed, there should be a continued
focus on how these new technologies are adopted and appropriated by their
intended users, so as to try and avoid a situation of ‘technology left “on the
shelf”’. However, concern was expressed in relation to the extent to which
current funding mechanisms are able to support all stages of this process:
Practicalities: research funding may not cover the whole lifecycle of a project
through to ‘wild’ deployment. May not support follow up documentation support
for users.
Concurrent with maximising technology reach is the idea of how the field
can move forward in positive, innovative, and even disruptive ways.
Technology design can function as an iterative process, allowing researchers
to learn more about and better understand the nature of autism and, in
some cases, to challenge accepted methods for evaluating the effectiveness
and outcomes of research and intervention. At the same time, technology
development can facilitate changes in pedagogy and intervention, acting to
support the empowerment and self-determination of its users. It is import-
ant, however, that these initiatives do not, themselves, exist in their
own bubble:
How do we disseminate these positive notions of the functions of technologies to
the wider public society, to distil the notions/conceptions of ‘technology ¼ bad’?
Technology design does not exist in a vacuum, it is part of a broader con-

text which includes human contact and learning. Inherent in every design
decision are a number of ethical, social, and cultural assumptions which
need to be explicitly considered. Participants suggested that ‘ethics and

responsible innovation’ should be the guiding concepts with respect to tech-
nology development in this area, focusing on things ‘that really matter’. One
participant noted that this involves adopting ‘“an inclusive common social
framework” as opposed to an “interventionist medical model”’, which
respects the schools/centres/individuals involved, and values the participa-
tion of the autism community.
Tools: what technologies are being, or should be used, developed,

and tested?
Many comments related to online communication and interaction via social
media. Specifically, that autistic people can have more control over interac-
tions via online media, including its pace, and the impact of sensory experi-
ences, compared to face to face. In turn, having control over these aspects
can lead to a reduction in anxiety:
Social norms on social networks are more stable than face-to-face interactions.
Everything is on record and you can copy that norm e.g. you can go back to
instances of similar conversation, see the response and consequences, work out
the preferred or better responses and then decide what to do. You can’t do
that in real life. There is no time to record, no help in face-to-face settings.
Rather than seeing social networking sites as isolating individuals, many

felt that they had huge potential in allowing people to practice and learn
about social skills which they might later be able to apply in face to face
interactions:
… getting to know people through the Web first works well. You’ll know who is
likely to behave in a predictable way so it’s ‘safe’ to work with in real life. That’s
when you can leave the bubble.
Social networking sites were also seen as levelling the playing field, in
some sense: ‘Everybody’s autistic online!’ However, others cautioned against
broad-brush comparisons: ‘An online world is neither better nor worse than
a “real” world’. Participants talked about the role of technology in facilitating
simultaneous face-to-face communication, while still advising caution:
Really interesting to see how technology can promote social initiation (both robot
and Virtual Reality). I think it’s worth researching that aspect deeper.
(original emphasis)
Participants were also keen to identify the importance of function, the

purpose, of context of use:
In order to move forward as this field, we really need to move away from the
‘technology versus non-technology’ debate. It’s about the affordances of particular
objects, situations, activities, and whether they motivate engagement and
communication (and enjoyment!). It might be a high-tech environment, but it could

equally be a bubble wand.
Indeed, some participants acknowledged that many of the benefits of

social networking sites could apply to technology in general; for example,
providing more control over the pace of an interaction and/or activity, as
well as over sensory inputs. The question of which technology tools to use
and develop is key, not least because of the rate at which technology is
advancing. This suggests a careful consideration of the current landscape in
terms of technology usage, as well as a focus on both user needs and wants:
What are people with ASC really using?
What do autistic people actually want/prefer?
A number of different types of technology were mentioned:

Social media – less information, asynchronous. Face-2-Face – unpredictability,
less control.
Different needs or lack of literacy but can use symbol systems.

Importance of hardware as part of context (and embodiment).
Given these factors, it is important to consider whether the focus should

be on new technology tools at all: ‘Is modifying existing tech better than
inventing new tools?’ One possible solution focuses on giving users the abil-
ity to create their own environments: ‘authoring of environments is key!’
Discussion
The seminars, and the stakeholder comments generated therein, provide
important, co-constructed perspectives on the autism and technology field
of research and practice. The socio-cultural analysis utilised reflects and com-
municates a much wider, as well as more nuanced, understanding of the
drivers, activities, and motivations in the field than typically reported else-
where in the literature. Crucially, participants indicated that the processes
and experiences of engagement and participation were valued as much as
(if not more than) any possible, more formalised, indications of ‘outcomes’. It
was also evident that participatory design as a core focus for action was
taken as a given; that is, autistic people should be more involved in deci-
sion-making and design of technology in the autism and technology field.
However, stakeholders were also clear that challenges remain in how repre-
sentative such involvement can or should be and, therefore, who should be
involved in such decision-making and development. The lack of representa-
tion of autistic people who do not communicate via speech, and the import-
ance of recognising the variety of ways in which communication takes place,
were regularly raised issues. Relatedly, responsible innovation was high-
lighted both in terms of which technology tools should be the focus of
research and how the places and participants of research are involved and
respected. Especially pertinent here were comments relating to schools not
being ‘zoos’ and the rejection of an ‘interventionist medical model’ approach
to research, including the idea of whether randomised controlled trials are
appropriate for determining what ‘really matters’ to autistic people
and families.
Our participants questioned fundamental assumptions that underpin
approaches to research in the field, not least what was commonly per-
ceived as the perpetuation of an inappropriate and unhelpful dichotomy
between technology on the one hand and the real world on the other. In
line with other commentators (for example, Eklund 2015), the validity of
this distinction was strongly critiqued. Notwithstanding the power and
value of such a critique ipso facto, there are also important ramifications for
the nature of research questions posed in the field and the methods and
research designs used to address them. Specifically, if there is questionable
validity regarding the dichotomy between real and digital, then a research
paradigm premised on training skills in the digital with the aim of general-
ising or transferring to the real becomes problematic if the sole basis for
judging value lies only on eventual ‘performance’ in the real world. Such
assumptions may limit the otherwise numerous available opportunities for
learning and development that occur through, within, and around technol-
ogy use; as emphasised in Abbott’s (2007) conceptualisation of ‘e-inclusion’,
for example.
Our data from 240 participants suggest there are three main overarching
themes that characterise the discussions which took place (as recorded via
the post-it notes) and the findings that emerged from the socio-cultural ana-
lysis. These main themes challenge researchers to think (at least in some
cases) differently about the nature and direction of research and practice
regarding: social inclusion, perspectives, and participation and agency. We
suggest that these three themes could underpin an ‘inclusive common social
framework’ for advancing the field, as envisaged by one of our participants.
These themes chime very loudly with Freire’s (1970) seminal work Pedagogy
of the Oppressed in which he challenged the dominance of power in educa-
tion to propose a more shared, co-intentional, approach to enabling learning
and transformation. Applying Freire’s lens to the autism and technology field,
autistic people have been, and in many ways continue to be, the oppressed
in Freireian terms, not least because (usually non-autistic) researchers have
traditionally held all the power and autistic people have not always been
involved in ways that move beyond the role of passive participant. This is
beginning to change in some areas (for example, Beck 2018; Chown et al.
2017; Fletcher-Watson et al. 2018) but such approaches represent the excep-
tion rather than the norm.
Social inclusion
Social inclusion as a core concept for the autism and technology field is
informed by Freire’s (1970) emphasis that the world is not a given reality to
which adjustments are made but, rather, something which human beings act
upon and transform (ontologically, of course, this argument also has an
extensive mirror in research philosophy). Specifically, Freire argued that an
individual’s reflection on action (praxis) is central for human development,
flourishing, and the generation of knowledge:
For apart from inquiry, apart from the praxis, individuals cannot be truly human.
Knowledge emerges only through invention and re-invention, through the restless,
impatient, continuing, hopeful inquiry human beings pursue in the world, with the
world, and with each other. (1970, 53)
Similarly, AT explicitly posits that human behaviour in the world is medi-

ated via physical and psychological tools that are of human invention.
Technologies are particular kinds of tools that mediate human behaviours
and, as such, cannot be considered separate or distinct from human actions
upon the world. From our own data, autism stakeholders emphasised that
technology is a part of everyday (‘real’) life, not separate from it, and often
does function as a means for shared interaction and/or initiation of commu-
nication in valuable ways. Technology-mediated spaces, especially online,
were considered places that recognise and respect autistic strengths and
preferences, and technological tools were agreed to be important for the
many varied and different means of expression, engagement, and empower-
ment across a diverse range of needs.
Important questions were raised about who is defined as having the
‘problem’; whether this should be characterised as a ‘problem’ in any case
and, therefore, where and for whom does the ‘problem’ lie? Such questions
are also represented in Milton’s (2012) characterisation of the ‘double-
empathy problem’, which discusses that the ‘problem’ (and, therefore,
answers provided by research) is generally identified as being located within
the autistic individual; that is, as the person having difficulties in understand-
ing and communicating within neurotypical assumptions and contexts (Beck
2018). However, as one of our stakeholders said: ‘Rather than using technol-
ogy to enhance individuals with ASCs’ understanding of us, can we use tech-
nology to enhance our understanding of them?’
Perspectives
This point links strongly to the second main theme of ‘perspectives’, which
relates to where the dominant agendas and voices in the autism and tech-
nology field lie and who contributes, or not, to those. Freire conceptualised
the dominance of perspective as ‘cultural invasion’, namely:
One cannot expect positive results from an educational or political action program
which fails to respect the particular view of the world held by the people. Such a
program constitutes cultural invasion, good intentions notwithstanding. (1970, 76)
Seminar stakeholders highlighted how important it is to critically examine

the cultural assumptions embedded in the field; for example, questioning ‘is
there only one right way to communicate?’ and whether there should be
‘Theories of mind’ rather than a dominant ‘Theory of Mind’ (see also Beck
2018). Mark Bushby, an autistic self-advocate who presented at the second
seminar (see Yuill et al. 2015), cautioned about the danger of ‘neurotypical
syndrome’, which is ‘assuming their way is the right way and that way is
superior’ (http://digitalbubbles.org.uk/?page_id=904). This position also aligns
with Davidson’s (2008) analysis of online representation and inclusion of aut-
istic people as noted earlier, and challenges the idea that utilising technol-
ogy to support and enable communication and interaction is inevitably a
‘collusion’ with the social difficulties that individuals experience (see Parsons
and Mitchell 2002). As one of the stakeholders from the first seminar
queried: ‘Collusion vs. alternative channel [for communication]?’
Agency and participation

As a corollary to recognising a socially inclusive approach that equally values
a range of different perspectives and voices comes the importance of
respecting the agency and participation of individuals; our third and final
overarching theme. Again, Freire recognised that for a field to revolutionise
there needs to be co-construction of knowledge between those who have
traditionally held power and those who have not:
Teachers and students (leadership and people), co-intent on reality, are both
Subjects, not only in the task of unveiling that reality, and thereby coming to know
it critically, but in the task of re-creating that knowledge. As they attain this
knowledge of reality through common reflection and action, they discover
themselves as its permanent re-creators. (1970, 51; emphases added)
This stance is reflected in the views from the stakeholders that autistic
individuals should have the agency to choose what is right for them, and to
make decisions about this. There was also recognition of the need to
embrace and support the strengths, creativity, and skills of individuals in
relation to the ways in which autistic people may (or may not) want to par-
ticipate in technology design, development, use, and evaluation.
Collaboration was also mentioned frequently by stakeholders, and it was
acknowledged that skills and understanding are needed from all sides to
enable successful collaboration, including between researchers and practi-
tioners, and between those who are autistic and non-autistic (see also Bolton
2018). The joint construction of knowledge is critical here since co-
construction recognises and respects that all stakeholders bring different

expertise to research problems that should be valued. As Seale, Nind, and
Parsons suggest:
Sometimes, creating initial boundaries in (researcher-led) research, and clarifying
roles, can be helpful rather than compromising in relation to engagement and
participation. (2014, 349)
Conclusions
This point returns us to the critical aspect of power and how power is nego-
tiated (or not) within autism and technology research and practice. This is by
no means a unique challenge in the broader field of inclusive research (Islam
2014; Oliver 2013; Nind 2014; Rose, Carr, and Beresford 2018) and emerging
accounts and critiques of participation in autism research (Bolton 2018;
Chown et al. 2017; Fletcher-Watson et al. 2018; Woods et al. 2018). However,
as Parsons and Cobb (2014) highlight, co-construction within the technology
and autism field may create special challenges because it is not always clear
what the best answers or processes are and, therefore, who has the neces-
sary expertise: technology tools develop and change swiftly, as do the
expectations from the contexts of their use.
In addition, forming the conditions for the kind of critical consciousness
that Freire (1970) supports can be very challenging for those who may strug-
gle with more abstract uses of language (Islam 2014), as well as disciplinary
jargon. Thus, technologies as mediating tools can be both the method as
well as the substantive focus for promoting more equitable participation and
engagement since more accessible forms of communication are possible, for
example, through augmentative and alternative communication systems and
devices (Robertson 2009), including iPads (Cumming et al. 2014). This is also
the case for enabling families and practitioners, as well as autistic children
and adults, to participate in this construction of knowledge about the value
and importance of technologies in everyday life and to provide counter-nar-
ratives and examples of positive technology use that challenge the
‘conceptions of technology ¼ bad’ (as one of our participants said). Where
research agendas are co-constructed, the space for different voices and ideas
to contribute knowledge and share ideas and learning widens (Parsons and
Kovshoff 2019).
We argue that the key to moving the field forward is, therefore, the adop-
tion of an appropriately critical stance that starts in a different place from
where it tends to be now (Parsons et al. 2017a), such that social inclusion,
perspectives, and agency and participation become the conceptual and
methodological means for shaping research questions, designs, objectives,
and the eventual utilisation of outcomes. These ideas are in line with:
Fletcher-Watson et al. (2018), reporting on their seminar series focusing on

the meaningful participation of autistic people in research more generally;
Beck’s (2018) rethinking of what empathy means in autism research; and
Robertson’s (2009) analysis of quality of life and neurodiversity. Our roadmap
for research in the autism and technology field (Table 2) provides the basis
for thinking differently about research and, therefore, doing research differ-
ently. Both are needed. We argue that it is through the processes and out-
comes of such practice-relevant and participatory research where impacts on
practices and policy are more likely to materialise and begin to make differ-
ences to the lives of individuals and families.
Finally, we emphasise Freire’s (1970, 31) stance that it is insufficient to
simply recognise and reflect on the challenges inherent in a field of activity,
but rather one has to act differently in order to make meaningful changes –
in other words, make a commitment to action and dialogue: ‘Solidarity
requires that one enter into the situation of those with whom one is solidary;
it is a radical posture’. We very much hope that this article provides food for
thought about why a radical stance is needed and how the field could work
together more effectively in order to create more transformative and ena-
bling contexts for autistic people and their families.
Note
1. In line with the preferences of the UK autism community, the terms ‘on the autism
spectrum’ or ‘autistic person’ will be used rather than ‘person with autism’ to
represent identity-first language; for further discussion, see Kenny et al. (2016).
Direct quotes from other authors retain their original terminology.
Acknowledgements
The seminar series ‘Innovative Technologies for Autism: Critical Reflections on Digital
Bubbles’ was a collaboration between the Universities of Southampton, Sussex, and Bath
in the United Kingdom. The authors would like to thank everyone who took part in the
seminar series as well as those who provided invaluable support behind the scenes. The
data upon which this article is based are available from the first author.
Disclosure statement
No potential conflict of interest was reported by the authors.
Funding
The seminar series was funded by the Economic and Social Research Council [ES/
M002624/1].
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Appendix 1. Practical steps for analysing the data
1. A broad initial AT categorisation of each comment was undertaken by the first

author, reading and re-reading the hard-copy transcripts, in reverse seminar order,
and making annotations on the script. This was a top-down process that began with
the seven main orienting categories of the AT framework (Subject, Object,
Community, Rules, Division of Labour, Tools, Outcome), ascribing each comment to
one or more of these categories.
2. Within NVivo these initial categories were then applied to the comments, and each
category was then sub-divided to reflect specific features or aspects. For example,
the main category ‘Rules’ was sub-divided into: flexibility, funding, time, training,
what does ‘individual’ really mean, and who has the knowledge? This was the more
emergent, bottom-up part of the analysis because the sub-divisions were based
solely on the data rather than any pre-conceived ideas or groupings.
3. The first author then provided each co-author with a roughly equal sub-set of the
coded outputs:
a. author X received all coded comments for all sub-divisions of ‘Community’,
‘Division of Labour’, and ‘Rules’ (n ¼ 149 coded statements);
b. author Y received ‘Tools’, ‘Subject’, and ‘Outcome’ (n ¼ 143 coded statements);
c. author Z received ‘Object’, which was the single biggest category with 11 sub-
categories (n ¼ 156 coded statements).
Each co-author was asked to summarise the main themes arising from each
main category of codes and also propose any overarching themes that
spanned more than one category (if relevant or possible).
4. Each set of summaries from the co-authors was then swapped with one other team
member for further checking and sense-making. Authors were given feedback and
asked to check that the summaries made sense in relation to the raw data (post-it
note comments) that were provided to each person. Further details were added by
all three co-authors at this stage, especially specific quotes used to illustrate particu-
lar points. A small number of quotes were also moved to other categories as part of
ensuring there was a clear and coherent narrative.
5. Finally, the first author collated and read through all summaries, making notes about
the overarching themes that were helpful for characterising the data. This was an
interpretive step where knowledge of the literature, the field, and the seminars them-
selves was inevitably present. Each of these overarching themes was then discussed
and agreed between the team members before being presented in this article.

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‘Whose agenda? Who knows best? Whose voice?’

Sarah Parsons, Nicola Yuill, Judith Good & Mark Brosnan

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‘Whose agenda? Who knows best? Whose voice?’

ABSTRACT ARTICLE HISTORY

CONTACT Sarah Parsons [email protected]

The analysis of the comments was done in a very careful and

implement targeted psychosocial and behavioural interventions (for over-

Indeed, Davidson (2008) discusses how communication online has created

Smartphones making children borderline autistic, warns expert. (The

Consequently, it is important to provide some balance and to critically

et al. 2012). Hence, there is limited consideration of wider perspectives and

Seminars and participants

researchers throughout, enabling them to contribute to and participate in

Subject: whose perspective(s) do we need to consider, and what might

However, many participants questioned the nature of this difference and

Further, the tendency for there to be a unidirectional focus on who uses

When designing technology, it is crucial to consider the full range of

Ensuring that the autistic voice is represented in design decisions was

The participatory nature of this challenge was further highlighted in relation

Community: who is involved?

Challenges were also mentioned, including managing constraints (such as

Users need to understand what academics do, teachers þ parents should

The complexities of integrating interdisciplinary perspectives can be chal-

Schools represent an environment within which inclusive design

The digital technologies developed should encourage and enhance inter-

Division of labour: how is or should the work be distributed?

Autistic adults relatively rarely engage in the design and development of

Similarly, minimally verbal members of the autistic community rarely take

raises questions about whether verbal members of the autistic community

One solution is to support key stakeholders or users of technology and

Tensions were also highlighted between the value of individual and

In addition, training to use technologies can also be a crucial determinant

Object of the activity: what technology is being made, or might be made,

Individuality was again highlighted as a key aspect that needs to

Comments also related to whether there is a ‘right’ way to interact, with

Technology design does not exist in a vacuum, it is part of a broader con-

need to be explicitly considered. Participants suggested that ‘ethics and

Tools: what technologies are being, or should be used, developed,

Rather than seeing social networking sites as isolating individuals, many

Participants were also keen to identify the importance of function, the

communication (and enjoyment!). It might be a high-tech environment, but it could

Indeed, some participants acknowledged that many of the benefits of

A number of different types of technology were mentioned:

Different needs or lack of literacy but can use symbol systems.

Given these factors, it is important to consider whether the focus should

Similarly, AT explicitly posits that human behaviour in the world is medi-

Seminar stakeholders highlighted how important it is to critically examine

Agency and participation

construction recognises and respects that all stakeholders bring different

Fletcher-Watson et al. (2018), reporting on their seminar series focusing on