|LEADERSHIP IN THE AUTISM COMMUNITY
Methods, Standards, and Goals
by Michelle Dawson
There are different ways to establish
leadership. One way is through accomplishment, innovation, generosity,
courage, or other qualities or contributions to society that encourage
others to follow by example.
A second way to establish leadership
is to create a scapegoat or similar target group, which, seen as an enemy
to be defeated, becomes the rallying point for those following the leader.
The existence of the target group is characterized as a threat to society
in various ways. For example, the group is dangerous, violent, and a catastrophic
burden on families and society. The target group may also be described
as lacking essential human qualities, and as not being persons or having
One way of discerning what kind of
leadership is being exercised is to examine how dissent and criticism are
dealt with. Positive leadership not only tolerates but craves criticism.
This tends to result in a flourishing of new and productive ideas, as well
as in a wide diversity of people and viewpoints contributing to goals which
will not be shamed by history.
Negative leadership responds to criticism
with derision and outrage. This criticism is then quelled by taunting,
threatening, demonizing, and defaming the critics. Negative leadership
strategies, while often immediately successful and certainly plentiful
in history, come to be recognized as reprehensible in retrospect, and by
those who have to endure and clean up after their destructive consequences.
The Canadian autism community is
predominantly defined by autism societies and FEAT groups, as well as by
actions such as the ABA petition campaign. Leadership in this community
has coalesced in the form of an anonymous website which has as its purpose
the assertion of the autism community’s values, methods, standards, and
. In the absence of objections to or protests against this action on the
part of prominent representatives of the Canadian autism community, this
website must be considered accurately to reflect the kind of leadership
this community welcomes and exercises.
While this kind of leadership prevails
unopposed in the self-defined Canadian autism community, other forms of
leadership exist in the broader worlds of autism research and ethics.
Researchers in Canada and the US
have both recognized the scientific and ethical poverty underlying the
negative and unsustainable tenets held to be unassailable by the recognized
leaders of the Canadian autism community, and proposed positive alternatives
in keeping with scientific approaches which have proved productive and
The following is a very short proposal
which has elicited interest from the member of Congress to whom it was
recently submitted by two highly regarded researchers. One is Morton Ann
Gernsbacher, PhD (Vilas Professor and Sir Frederic C. Bartlett Professor,
University of Wisconsin-Madison), considered one of the best experimental
psychologists in the US, who chose autism research as the subject of her
Presidential Address to the annual conference of the American Psychological
Association in 2002. The other is Thomas Zeffiro, MD, PhD (Associate Professor
of Neurology, Georgetown University), who directs the Center for Functional
and Molecular Imaging at the Georgetown University Medical Centre.
Here is Dr Gernsbacher and Dr Zeffiro's
The past decade has witnessed
an accelerated tempo in research on autism. However, without exception,
all research to date approaches autism from a perspective of pathology:
Autism is envisioned as a disease to be cured, and autistic individuals
are characterized solely by their deficits and impairments. Consider a
contrasting and highly successful model for scientific inquiry:
"Twenty years ago, most scientists
associated old age with decline and disability. Today, the concept of aging
has been transformed. An important root of this shift in thinking can be
traced to 1984, when the MacArthur Foundation brought together a group
of scientists from widely disparate fields - physicians, psychologists,
sociologists, cell biologists, and others - to mount an intensive, ten-year
study of aging. This group, the MacArthur Network on Successful Aging,
took a simple but radical approach to its research. Rather than focus on
the problems of disease and disability associated with aging, which was
the accepted approach of gerontological research at the time, the network
chose to study people who age well." (www.macfdn.org/anniv/fostering_new_knowledge/network_on_successful_aging.htm)
We propose to radically reorient
the scientific study of autism just as researchers have radically reoriented
the scientific study of aging. Rather than conceptualizing autism as a
disease, we conceptualize autism in the same human rights perspective as
Deafness (which up to 30 years ago was, like autism is now, considered
a gross deficit in neuroanatomy) or sexual orientation (which up to 30
years ago was, like autism is now, considered a severe psychiatric disorder).
Working from this perspective we propose to bring together leading scholars
in the fields of cognitive science, medicine, engineering and public policy
to work in a center without walls. Our goal will be to understand autism
as a neurological difference; to empirically identify the strengths and
competencies that autistic individuals possess; and to provide the scientific
answer to how autistic individuals can live successfully.
Research as envisioned in the above
proposal is in fact being conducted, and published, in Canada and elsewhere,
providing an excellent foundation for the direction being suggested.
I have the privilege of being involved
in this research. I am very aware that groups whose goal is to have autism
uniquely and permanently singled out and defined in federal law as a pathology
or disease have the evident public support of many MPs and senators in
Canada. These groups, which include autism societies and FEAT groups, promote
views of autism and autistic people which are inconsistent with the existing
science. They are also inconsistent with basic principles of ethics, and
with what are assumed to be Canadian values about how to deal with human
Legislating or otherwise imposing
one entirely negative, if not disrespectful and destructive, approach to
autism when there exist positive, scientifically- and ethically-sound approaches
which have repeatedly proven their long-term effectiveness, sustainability,
and success in equivalent populations, is unproductive if not harmful,
and will be costly in every conceivable way in the future.
A Choice in Leadership
The above is a slightly modified
version of a letter I sent to a handful of MPs, cabinet ministers, and
senators who have various levels of interest in autism. It is precisely
this kind of letter which the popular leadership of the Canadian autism
community describes, on its anonymous website and elsewhere, as threatening,
harassing, abusive, offensive, idiotic, and pernicious.
In contrast to this response to the
presentation of criticism accompanied by positive alternatives, the Canadian
researcher and clinician Laurent Mottron, MD, PhD, has shown how positive
leadership interacts with serious criticism. I have criticized Dr Mottron’s
work, and the area he works in, more directly and harshly than I have any
other individual, researcher or area of research.
Dr Mottron’s response was to scrutinize
this criticism for validity, then eventually to welcome it on its merits.
He offered me an affiliation with his research group, and challenged my
positions with a wide range of responsibilities, apart from what he has
called my role as merciless critic. In conference presentations from Beijing
to Belgium to Sacramento, in a series of widely distributed professionally-made
videos, in a groundbreaking book, and in peer-reviewed journal papers,
Dr Mottron takes and enacts the position that autistic people have much
more to contribute to autism research than our participation as study subjects,
and should long ago have been respected and taken seriously.
Dr Mottron is now in effect collaborating
with the uniquely autistic strengths which his work has empirically revealed.
Over the course of more than a decade, his work has shown that the extraordinary
abilities of savant autistics, by their measurable equivalent presence
in non-savant autistics, are not freakish exceptionalities in autism but
are consequent to strengths intrinsic to all autistics. This leads to proposals
about how autistics can live successfully that depart from the deficit-
and pathology-driven status quo.
There is a choice then, between the
kind of leadership which is manifested by the anonymous website http://126.96.36.199/dawson/
and the kind of leadership shown in the proposal written by Dr Gernsbacher
and Dr Zeffiro, and in Dr Mottron’s research group.