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Journal of Child Psychology and Psychiatry 61:3 (2020), pp 233–235
Commentary: Broadening the research remit of
participatory methods in autism science – a
commentary on Happe
and Frith (2020)
Elizabeth Pellicano
Macquarie School of Education, Macquarie University, Sydney, NSW, Australia
Autism science has transformed beyond recognition
in the last two decades. International investment has
grown extensively and the number of papers pub-
lished on autism has increased 10-fold (Pellicano,
Dinsmore, & Charman, 2014), far surpassing pub-
lications on related topics. The sheer amount of
scientific research on autism has no doubt been
instrumental in many of the discoveries and insights
so eloquently described by Happ
e and Frith (2020).
But, as autistic scientist Michelle Dawson reminds
us, quality matters too and, for that reason, it is a
delight to recognise the contribution that both Happ
e crucial explanation lies in the way in which autism
and Frith have made, dramatically changing our
understanding of autism in a host of ways.
Perhaps primary among the many advances sur-
veyed in Happ
e and Frith’s review is that whereas
autism was once identified as a relatively ‘rare and
predominantly male disorder, usually accompanied
by intellectual and language disabilities’ (p. 36), it is
now seen as a relatively common set of cognitive and
neurobiological differences among a diversity of
minds. This shift has accompanied a move from a
crudely deterministic medical model to a broader
and more nuanced social model of disability (see den
Houting, 2019). It is also being driven both by
superb scholars like Frith and Happ
e, and by a
number of autistic scholars and community actors
who are committed to ensuring that autistic people
themselves are ‘at the centre of the autism conver-
sation’ (Ne’eman, 2011). Through their combined
efforts, our understanding of autistic life is richer
and more profound than ever.
Despite this hugely encouraging trend, however,
and as Happ
e and Frith acknowledge, the fruits of
this research are still not being felt anything like
directly enough by the broader autistic and autism
communities. The life outcomes of millions of autis-
tic people remain far too bleak. Autistic adults are far
less likely than nonautistic people to have a job, live
independently or to have friends and more intimate
relationships. Many also have co-occurring difficul-
ties with their physical and mental health, which can
require often-substantial ongoing support. Autistic
people die, on average, 16 years earlier than
nonautistic people. To community members, it
Read the full article at doi: 10.1111/jcpp.13176
Conflict of interest statement: No conflicts declared.
© 2020 Association for Child and Adolescent Mental Health
Published by John Wiley & Sons Ltd, 9600 Garsington Road, Oxford OX4 2DQ, UK and 350 Main St, Malden, MA 02148, USA
doi:10.1111/jcpp.13212
remains true that autism science is a powerful
instance of the broader phenomenon recently iden-
tified by a Nature (2018) editorial that ‘too much
research done in the name of society’ fails to be of
direct use to society.
There is, therefore, an urgent need to produce more
effective basic autism science that is capable of
generating tangible benefits for the wider community.
There are, no doubt, many complex reasons why the
impressive expansion in autism science described
above has not yet yielded those benefits. But one
research is conventionally designed and conducted.
The vast preponderance of autism research world-
wide still focuses on the underlying genetic causes
and biology of autism (see Pellicano et al., 2014). This
focus is in sharp contrast to the stated research
priorities of community members – autistic people,
their family members, educators, clinicians and other
professionals – who have consistently called for
research in areas of more immediate, practical con-
cern, including interventions, education, services
and supports (Pellicano et al., 2014).
As Happ
e and Frith note, one potential way to
address this concern is to involve autistic people and
their allies directly in the research process, including
in agenda-setting. Participatory, co-designed and co-
produced research has a long history outside of
autism – most notably with regard to HIV and
Aboriginal and First Nations communities. It is also
currently having sweeping effects on more basic
science, including agriculture and environmental
science, where it is widely reported that processes
which draw on the ‘practical wisdom’ of nonscien-
tists can have a dramatic effect on both the research
agenda and on the ability of research to identify
otherwise hidden explanatory factors (Nature, 2018).
Within autism research, this kind of participatory
research is growing steadily in some areas, including
in areas related to quality of life, health care and
mental health (see Fletcher-Watson et al., 2019, for
examples). Within clinical and educational settings,
genuinely co-produced techniques are also increas-
ingly established as new practices are shaped hand-
in-hand with community partners. It is vital, how-
ever, to insist that the potential contribution of such
a participatory approach should not stop there.
Involving people who draw on their own lived
234 Elizabeth Pellicano
experience to help us think outside the ‘normative’
box could also have far-reaching and disruptive
effects on basic autism science – work examining
the fundamental building-blocks of autism – as well
as on more straightforwardly translational work. To
give just one example: our cognitive models of
autism – the kind of work in which Happ
e and Frith
have excelled – must be up for regular interpretive
debate with autistic people themselves. The research
process should enable people to compare their own
lived experiences to the experiences that are pre-
dicted by the kind of laboratory-based experiments
that currently dominate the scientific process. Peer
review should mean nothing less.
Involving autistic people and their allies in this
kind of far-ranging research means that all involved
need to learn how best to appreciate people’s differ-
ent experience-based expertise (Collins & Evans,
2002). Scientists’ knowledge is represented by
empirical observation, theoretical argumentation
and ‘objective’ truths. Parents have unique experi-
ence about their child’s development and the type of
support they might need. And autistic people have
direct experience of what it is like to be autistic.
These different forms of expertise are not at odds
with each other; they are vital components of the
same endeavour.
I had a powerful reminder of this in my own work
four years ago when I began studying mental health
in autism. Working alongside a group of young
autistic adults, my research colleagues and I worked
to identify a crucial new research agenda by directly
contrasting the lived experience of autism of our
collaborators with the established conventions in the
autism literature. One issue that swiftly surfaced as
we did so was the widespread academic idea that
there is an autism-specific type of anxiety, an
‘atypical’ anxiety that is exacerbated by, and linked
to, the key features of autism. The majority of our
autistic collaborators felt this poorly represented
their own experience. They did not tend to locate the
root causes of their anxiety in their autism itself.
Rather, they suggested their anxiety emerged from
the often-hostile experience of other people’s inter-
actions with them. Having jointly set the research
agenda, we continued to share decision-making
power throughout the research process drawing
upon a wide range of co-productive techniques. The
resulting study itself was a genuine collaboration
between scientists and nonscientists in a way that
immeasurably enhanced the results (Crane, Adams,
Harper, Welch, & Pellicano, 2018).
Enabling such community involvement in more
basic science in this way is, of course, not without its
challenges. Outside the field of autism, researchers
have raised concerns regarding the perceived ‘scien-
tific literacy’ among community partners, particu-
larly with regard to highly specialised experimental
research, and sharing power and control in the
research process with nonscientists (Boaz, Biri, &
J Child Psychol Psychiatr 2020; 61(3): 233–5
McKevitt, 2016). They have also expressed deeper
concerns about the value of subjective experience to
the scientific research process, especially of poten-
tially introducing bias into otherwise rigorous scien-
tific methods. This scepticism has been exacerbated
in the case of autism, where it has sometimes been
suggested that autistic people do not possess the
requisite self-awareness to make a significant con-
tribution to the scientific process, or that their
‘black-and-white thinking style can be a challenge’
(Pellicano et al., 2014). Yet, we know that such
problems with perspective taking also go the other
way. A growing body of research shows that
nonautistic people have difficulties perceiving and
interpreting autistic people’s behaviours, suggesting
a lack of alignment between the minds of autistic
and nonautistic people, in line with Milton’s (2012)
so-called ‘double empathy’ problem. They further
imply that nonautistic researchers might not always
be best placed to understand autism without the
involvement of autistic people in scientific research.
Whatever the difficulties, there are clear substan-
tive, scientific reasons for developing new ways of
engaging autistic people in research. Put simply, we
should get more effective autism science if we
actively involve community members in our research
who can direct attention to aspects of the autistic
experience that are routinely missed without such
input (Bracic, 2018). Indeed, scientific break-
throughs on complex real-world issues like autism
call for diverse collaborations – those that combine
complementary forms of knowledge, views and val-
ues, approaches and levels of analysis (see Frith,
2020). The current scientific orthodoxy needs to
incorporate methods to enable such participation
which avoid potential difficulties while also enabling
both scientists and community members to develop a
capacity to appreciate different perspectives and
work flexibly together. It is that kind of work that
will allow the next stage in the transformation of
scientific understanding of autism.
Acknowledgements
The author has declared that they have no competing or
potential conflicts of interest.
Correspondence
Elizabeth Pellicano, Macquarie School of Education,
Macquarie University, 29 Wally’s Walk, Sydney 2109,
NSW, Australia; Email: liz.pellicano@mq.edu.au
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Accepted for publication: 10 January 2020