Autistic Community and the Neurodiversity Movement: Stories from the Frontline

335 Pages·2020·4.368 MB·English

by  Steven K. Kapp

Autistic Community
and the Neurodiversity
Movement
Stories from the Frontline
Edited by Steven K. Kapp
Autistic Community and the Neurodiversity
Movement
Steven K. Kapp
Editor
Autistic Community
and the
Neurodiversity
Movement
Stories from the Frontline
Editor
Steven K. Kapp
College of Social Sciences
and International Studies
University of Exeter
Exeter, UK
Department of Psychology
University of Portsmouth
Portsmouth, UK
ISBN 978-981-13-8436-3 ISBN 978-981-13-8437-0 (eBook)
https://doi.org/10.1007/978-981-13-8437-0
© The Editor(s) (if applicable) and The Author(s) 2020. This book is an open access publication.
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Foreword
This book describes some of the key actions that have defined the autism
rights branch of the neurodiversity movement since it organized into a
unique community over 20 years ago. The actions covered are legend-
ary in the autism community and range from “The Autistic Genocide
Clock” through to the “Institute for the Study of the Neurologically
Typical”, and famous pieces of work like “Don’t Mourn for Us”.
These acts have forged new thinking on autism and established the neu-
rodiversity movement as a key force in promoting social change for autistic
people. It is primarily autistic activists who have been at the vanguard of
the neurodiversity movement. All but two of the 21 contributors to this
volume identify as autistic. The collection describes the biographies and
rationale of key activists in their own words, thus the motto of disability
rights activism “nothing about us without us” is a guiding tenet for the
book. The phrase (and this volume) are rooted in the concept of standpoint
epistemology. A standpoint position claims that authority over knowledge is
created through direct experience of a condition or situation. Standpoint
epistemology is related to the idea of lay expertise, which is discussed
extensively in the sociological literature. So, the book values the experi-
ence of autistic people as a source of knowledge about their own plight.
v
vi Foreword
The volume acknowledges that individual contributions are shaped by
contributors’ political and social experience as well as their lived under-
standing of autism. Standpoint theory suggests inequalities foster particu-
lar standpoints, and that the perspectives of marginalized and oppressed
groups can generate a fairer account of the world. Individuals from such
groups are in a distinctive position to call out forms of behavior and prac-
tices of the dominant group, hopefully leading to social change. This col-
lection illustrates the perspective of each contributor’s unique voice. But
together, the chapters powerfully illustrate the sense of a group with a
shared point of view, united in a common movement.
Enormous credit goes to the Editor, Steven K. Kapp, who bought
this volume together and was able to simultaneously command the
trust of the autism activist community and the respect of the academic
community—not an easy balance to get right!
The hope is this book will provide a reference text for readers inter-
ested in the history and ideas of the neurodiversity movement and how
these ideas have shaped production of expert and especially lay knowl-
edge about autism. However, the neurodiversity movement has been
problematized by both parents and academics for being unrepresenta-
tive and divisive, and the book also addresses some of these critiques.
The target academic audience is primarily undergraduates and schol-
ars in sociology, history of medicine, and psychiatry. This collection
of activists’ stories should act as a reference text useful as a source for
further academic debate and analysis. Another important set of readers
are parents wishing to learn more, and of course autistic persons them-
selves. Our generous funder, the UK’s Wellcome Trust, has supported
the publication of this volume on an open access platform to make it
available for free online.
The book is not a complex analysis or a “celebratory” piece; instead
it offers raw first-person accounts, relating how and why activists have
contributed. It aims to preserve and document the stories of some of
the original activists whose voices helped shape and inspire the fledgling
neurodiversity movement.
Enjoy!
Exeter, UK Ginny Russell
Preface
This book has emerged from a postdoctoral research fellowship within
sociology in the U.K. as part of the Wellcome Trust-funded project
Exploring Diagnosis: Autism and the Neurodiversity Movement, which
includes academic engagement with the movement as well as criti-
cal analysis of its position. The following chapters provide an overview
of the neurodiversity movement, describing the key actions of autistic
activists in the movement between 1992 and the present day, in their
own words. Although previous books have provided coverage of the his-
tory of autism inclusive of the neurodiversity movement as narrated by
a journalist or researcher [10, 12] or featured anthologies of contribu-
tors from autistic people published within the movement [1, 3, 9], this
edited collection provides the first history of the movement from first-
hand accounts of members of the autistic community and both autistic
and non-autistic parent movement activists. Following my introduction
to the movement and contributions, the book contains 19 chapters by
21 authors organized into parts about the forming of the autistic com-
munity and neurodiversity movement, progress in their influence on the
broader autism community and field, and their possible threshold of the
vii
viii Preface
advocacy establishment. This is followed by a description of some cri-
tiques of the movement, and I follow with the conclusion.
The Exploring Diagnosis project research inquires into how diagnosis
catalyzes mobilization, focusing on autistic adults and the neurodiver-
sity movement (NDM). The project aimed to assess what the under-
standings of neurodiversity are among autistic adults. Ginny Russell, the
project lead, and I conducted a thematic analysis [2] of autistic adults’
responses to the question “What is neurodiversity in your own words”
from a study I co-led with Kristen Gillespie Lynch et al. [4]. Russell and
I found that the data largely mapped onto definitions autistic adults in
the movement have given [5, 11] defining the NDM as encompassing
both human biological differences in cognition, brains, and genes while
also serving as an activist tool for change toward acceptance and inclu-
sion of autistic and other neurodivergent people. Responses described
neurodivergent people as socially oppressed and stigmatized, yet pos-
sessing valuable differences that should not be cured but instead sup-
ported with rights and accommodations. Considering that research
participants knew of but did not necessarily subscribe to the movement,
the consensus that emerged suggested clarity about the meaning of
(the) neurodiversity (movement) as understood by aware autistic adults.
Indeed, the descriptions of these terms from contributors to this book
who chose to put them forward, aligned well with those in both the
popular literature and aforementioned analysis.
As contributors (including myself) make clear, we think autism
involves strengths and weaknesses that amount to both a difference and
a disability, and do not consider autism an advantage overall but see
autistic people as socially disadvantaged. No one emphasized strengths
overall or highlighted particular strengths, but we take a “big-tent”
approach to autism that recognizes no one’s worth depends on having
particular talents or abilities. The Exploring Diagnosis project corrobo-
rated this further by interviewing autistic adults in the UK about the
strengths participants think autism confers, which almost everyone
identified, and yet they mentioned moderating influences that could
make these traits function as challenges [8].
Conversely, the book most addresses the question of what political
activities the NDM has taken part in, and how these have challenged
Preface ix
the notions of diagnosis and intervention for autism. The contributors
illustrate notable examples of the manifestos (both ideological and as
applied to policy), mailing lists, websites, conferences, issue campaigns,
academic projects and journals, books, organizations, and advisory roles
to parent- and professional-led bodies that constitute some of the range
of the neurodiversity movement’s political activities. These actions have
had widespread impacts toward an emerging view among families, prac-
titioners, researchers, and the public on autism as both a difference and
disability.
Positionality Brought to the Book
I am both an autism scholar and an autistic neurodiversity activist, so
while I seek to maintain high standards of rigor and fairness in edit-
ing this collection, it may reflect this positionality. In 2007 Scott
Robertson, the co-founder and then Vice President of the Autistic
Self Advocacy Network, reached out to me privately on Facebook and
undertook a mentorship role in which he introduced me to the neu-
rodiversity and disability rights movements. At that time, as an under-
graduate, I lived in my hometown of Los Angeles in the world’s region
(Southern California) most dominated by the mainstream medical
and alternative medical autism establishment. Groups like the Center
for Autism and Related Disorders (CARD) and the Lovaas Institute
anchored the provision of therapy based in applied behavioral analy-
sis designed to “recover” autistic children, alongside the parent-based
advocacy organization Cure Autism Now (which the similar organi-
zation Autism Speaks absorbed that year). Meanwhile, groups such as
Talking About Curing Autism (TACA) and Generation Rescue (both
represented around this time by Jenny McCarthy, “Ph.D. in Google
Research” [6]) spread potentially deadly disinformation including vac-
cine skepticism and chelation therapy. Amid this hostile climate, I
decided to earn an actual Ph.D. (in educational psychology) at the heart
of the medical model of autism research, the University of California
Los Angeles, to learn the thinking and language of mainstream sci-
ence to better critique them. Over this time I observed early autistic
x Preface
leaders (most prominently Jim Sinclair) become much less active, and
their products become increasingly difficult to access, such as websites
no longer hosted or archived. Leaders of autism’s cure movement took
down materials as well, but this more often happened to obscure their
more outrageous products in response to autistic-led resistance, as they
usually have the resources to continue displaying them (see Rosenblatt
[7] for examples). The need to preserve and document the history of the
autistic community and neurodiversity movement had become appar-
ent. Like my career, the book merges science and advocacy, intended for
both academia and the autism community.
Exeter, UK Steven K. Kapp
References
1. Bascom, J. (2012). Loud hands: Autistic people, speaking. Washington,
DC: Autistic Self Advocacy Network.
2. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology.
Qualitative Research in Psychology, 3(2), 77–101.
3. Brown, L. X., Ashkenazy, E., & Onaiwu, M. G. (2017). All the weight of
our dreams: On living racialized autism. Lincoln, NE: DragonBee Press.
4. Gillespie-Lynch, K., Kapp, S. K., Pickens, J., Brooks, P., &
Schwartzman, B. (2017). Whose expertise is it? Evidence for autistic
adults as critical autism experts. Frontiers in Psychology, 8, 438.
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