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Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Monday, January 08, 2007

 

NIH Steering Committee Petition

This has been prepared by a group of individuals and put online for your signature:

Statement
The past decade has witnessed an accelerated tempo of NIH funded research into the causes and character of autism. However, without exception, NIH funded research has approached autism from a perspective of pathology: Autism is envisioned as a disease to be cured and autistic citizens 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."1

We believe that the scientific study of autism needs to be radically reoriented, just as researchers in the MacArthur Network on Successful Aging radically reoriented the scientific study of aging. Rather than continuing to conceptualize autism as a disease, we believe that NIH must begin to conceptualize autism in the same human rights perspective as it conceptualizes sexual orientation (which up to 30 years ago was, as autism is now, considered a severe psychiatric disorder). Rather than continuing to support studies aimed only at investigating autistic deficits, we believe that NIH must begin to support research that investigates autistics' unique strengths. And rather than pathologizing the biological and behavioral differences between autistic and non-autistic citizens (many of which are no greater than those between males and females), we believe that NIH must begin to embrace the diversity that autistic citizens embody.

We admonish NIH to meet these goal for future autism research:

to understand autism as a neurological difference that results in atypical modes of perceiving, thinking, and acting;
to identify empirically the strengths and competencies that autistic individuals possess; and
to provide the scientific answer to how autistic individuals can develop and live successfully – as autistic individuals.
There can be little doubt that such a re-conceptualization will result in autistics leading more fulfilling and respected lives and non-autistics living more harmoniously among autistics.

Please sign by clicking here.

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