Applying Metascientific Principles to Autism Research

159 Pages·2023·5.257 MB·English

by  Matthew Bennett

Applying Metascientific
Principles to Autism
Research
Matthew Bennett
Applying Metascientific Principles to Autism
Research
Matthew Bennett
Applying
Metascientific
Principles to Autism
Research
Matthew Bennett
Independent Researcher
Adelaide, SA, Australia
ISBN 978-981-19-9239-1 ISBN 978-981-19-9240-7 (eBook)
https://doi.org/10.1007/978-981-19-9240-7
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This book is dedicated to future generations of scholars who will devote their
professional lives to the study of autism.
F
oreword
Having watched and been a part of the evolution of autism research over the
past two decades, I am excited by what the coming years will bring. Indeed,
things are changing rapidly. Our understanding of autism is changing, includ-
ing what it is, what it means in people’s lives, and what it means for people’s
identities. Our thinking about autism is changing. While slow, we are seeing
the gradual identification and erosion of ableist views and attitudes about
autistic people, including their way of understanding and interacting with
other people and the world. These changes have been driven largely by the
generous and selfless sharing of insights by autistic people about their lives,
views, preferences, and priorities. I see clear evidence of a growing desire,
understanding, and commitment from both the autistic and non-autistic
communities to work together to bring about positive change in society, as
the basis for upholding individual rights and supporting meaningful and val-
ued change in individual people’s lives in ways that they chose and desire.
But is autism research changing? After all, research can play an invalu-
able role in inspiring, informing, and supporting positive change, if done
correctly.
Few people are as qualified as Matthew Bennett to answer this ques-
tion. Bringing together his lived expertise as an autistic person, research
expertise, and professional expertise in roles that sit at the interface of
research, policy, and practice, Matthew is uniquely positioned to offer an
authoritative and insightful view.
Having read the chapters that follow, my impression is that the answer
to the question is yes, autism research is changing, but not enough, and not
fast enough.
vii
viii FOREWORD
This book sets out a roadmap for how autism research can be, and
should be, conducted. I say can be conducted because for many readers, it
will open their eyes to new ways of thinking about research itself, such as
in Chap. 6, which outlines how to create studies that are respectful of
autistic participants. I say should be conducted because the book also pro-
vides readers with a masterclass on how to engage in high-quality research,
and address the proliferation of low-quality research in a practical and
applied way.
Chapter 1 introduces the book and a concise summary of what metasci-
ence is, why it matters, and how the book aims to support readers in
designing, carrying out, interpreting, reporting, and applying high-quality
research and its findings. Chapter 2 addresses the issue of misleading
research and provides guidance to readers about recognising and avoiding
predatory publishers. Chapter 3 addresses the reproducibility crisis in
autism research. While not unique to this field, Matthew eloquently pres-
ents the challenges it poses, and how readers can help address these in
their research. Chapters 4 and 5 provide guidance on improving peer
review processes and avoiding questionable research practices respectively.
As noted, Chap. 6 provides an insightful explanation of how readers can
be partners in, and champions of, research that is respectful of autistic
participants.
In setting out a roadmap for change, Matthew presents a challenge. My
reading is that the challenges readers to embrace new and more appropri-
ate ways of conducting autism research and to do so in a principled man-
ner. This means being ethical and professional, but also humanistic and
individualised in our approach. Indeed, most striking to me in this book is
the constant connection between what needs to be done to improve
autism research, how as individuals we can contribute, and why it matters
so much to individual autistic people and those closest to them. To this
end, the book should be a valuable resource for anyone wanting to con-
tribute to positive change moving forward.
Menzies Health Institute Queensland David Trembath
Griffith University, Southport, QLD, Australia
CliniKids, Telethon Kids Institute, Subiaco, WA, Australia
P
reFace
In the decades after Leo Kanner published his seminal paper, titled
‘Autistic Disturbances of Affective Contact’, countless generations of aca-
demics have devoted their professional careers to improving our under-
standing of autism. Their efforts should be commended, since, among
other things, they have given us insights into what it is like to be autistic
and what can be done to support autistics in society. However, in their
unrelenting quest for new knowledge, academics rarely stop and self-
examine the integrity, robustness, and limitations of their actions as
researchers. For example, most do not preserve or even contemplate pre-
serving their datasets so that others can confirm their findings by repeating
an identical analysis of the dataset. One consequence of this practice is that
the truthfulness of findings, including some that have been used to pave
the way for newer research, will forever remain uncertain.
Most books focus on a particular aspect about autism. In contrast, rela-
tively few contain explanations about the shortcomings associated with
the creation of this knowledge. This authoritative book addresses this defi-
cit by giving readers the opportunity to contemplate how we have acquired
knowledge about autism instead of what has been discovered. Different
readers can obtain various benefits from this conceptual distinction.
Scholars can gain valuable insights about how they can improve the tech-
niques that they use to create research about autism. Alternatively, if the
reader is an editor of an academic journal, they can learn about some of
the shortcomings of the peer review process and some applicable solu-
tions. Equipped with this knowledge they can alter the peer review process
ix
x PREFACE
they oversee to ensure that the research that is published and disseminated
is more reliable.
There is an ongoing debate in the field of autism spectrum research, as
well as in the broader field of disability studies, as to what is the most
appropriate use of terminology to address members of the autistic com-
munity. Some prefer using person-first language (i.e., people on the autism
spectrum) while others prefer using identity-first language (i.e., autistic
person). Throughout this book I use identity-first language, since research
has shown that most autistics prefer this language convention. Furthermore,
it is my belief, as an autistic researcher, that since the autism spectrum is an
inseparable part of a person’s identity, the word autistic should be used
instead of person with autism or person on the autism spectrum.
Adelaide, SA, Australia Matthew Bennett
a b
bout the ook
There is a considerable amount of research about the autism spectrum
that has both improved our understanding of autism and created strategies
that can support autistics and their families. However, metascientific strat-
egies that can improve the production of this research have not been com-
prehensively applied to this field. Consequently, the quality and integrity
of research about the autism spectrum is lacking compared to other fields.
Several metascientific concepts and how they can be applied to the study
of autism are outlined in this book. Equipped with this knowledge, the
reader, regardless of their experience, will be able to produce high-quality
research about the autism spectrum that will withstand continual scrutiny.
xi