Leadership in the Autism Community
Values, Methods, Standards, and Goals
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 no personhood.
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 goals http://66.221.49.64/dawson/. 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.
A Letter
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 sustainable.
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 proposal:
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 differences.
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://66.221.49.64/dawson/ and the kind of leadership shown in the proposal written by Dr Gernsbacher and Dr Zeffiro, and in Dr Mottron's research group.
18 April 2005
