Autism Research Consortium

Autism now appears to be a developmental disorder of the central nervous system. The refinement of the clinical evaluation of autism indicates that there may be many subtypes of autism with a spectrum of symptoms, in terms of both appearance and severity. However, the etiology of autism remains unknown. There is still no form of treatment to predictably improve the social, cognitive and behavioral impairments that limit the daily functioning of most autistic children and adults. Although recent advances have improved the characterization, care and treatment of individuals with autism, it remains a pervasive, devastating, and life-long disorder for most of those affected.

Over the past 12 years, a limited amount of brain tissue from autistic subjects has been donated to The Autism Research Foundation for research purposes. Initially, the tissue was used for the study of the neuropathology of autism. Since 1987, however, all autopsy material has been divided in half, one half being frozen and the other half used in the continuing studies of the neuropathology of autism. We have now accumulated a sufficient number of these frozen brains to begin studies by other techniques. This frozen tissue has been kept at the Harvard Brain Tissue Resource Center in Belmont, Massachusetts.

In June 1996, a group of investigators met in Boston to discuss how to best utilize this valuable and limited resource. It was decided that a multidisciplinary, integrated and coordinated approach would stand the best chance of maximizing the use of this tissue. To that end, The Autism Research Consortium (ARC) was formed. Current members of this research team include George M. Anderson, Ph.D (Yale University School of Medicine), Margaret L. Bauman, MD (Massachusetts General Hospital, Boston), Gene Blatt, Ph.D (Boston University School of Medicine), Edwin H. Cook, MD (University of Chicago), Jeanette JA Holden, Ph.D (Ongwanada Resource Center, Kingston, Ontario), Thomas L. Kemper, MD (Boston University School of Medicine), Marcie MacDonald, Ph.D (Massachusetts General Hospital), Francesca Persichetti, Ph.D (Massachusetts General Hospital), Jonathan LR Rubenstein, Ph.D (University of California at San Francisco), Stephen Vincent, Ph.D (Human Brain Tissue Resource Center, Belmont, MA), Gary L. Wenk, Ph.D (The University of Arizona), and Andrew Zimmerman, MD (Kennedy Krieger Institute and Johns Hopkins University).

The collaborative research effort has been funded by the generous support of the Stallone Fund for Autism Research, the Natalie Zinn Haar Foundation, the Herman Goldman Foundation, the Zalec Familian and Lilian Levinson Foundation as well as gifts from families and private individuals to The Autism Research Foundation (Dr. Margaret Bauman, principal investigator). The consortium’s current research focuses on the neurochemical, neuroimmunological, genetic, and neuroanatomical analysis of the frozen tissue, with a major emphasis on regions of the brain which have been found to be anatomically abnormal in autism. In addition, the ARC is now actively seeking additional research proposals from investigators whose work could supplement the studies already underway. ARC has formed a Tissue Resource Committee whose mission is to review any and all submitted proposals.

None of the planned or future studies would have been possible without the generosity and foresight of families, who during a very difficult time in their lives, made the decision to donate the brain of their autistic family member to research. The progress which has been made to date in our understanding of brain abnormalities in this disorder is, in large part, due to the availability of autopsy material for study and we are deeply grateful to these families for their substantial and very meaningful contribution to autism research.

Despite advances in our knowledge over the past decade, there is much work yet to be done and there continues to be a critical need for autopsy material from individuals with autism, PDD, and Asperger’s syndrome. Interested parents or guardians should contact Mr. Neel Madan, ARC coordinator at The Autism Research Foundation (617-414-5286). The process starts with a full and frank consideration of the emotional and practical aspects of brain donation. Registration of potential donors is encouraged, but not necessary. At the time of death, a 24-hour telephone number of the Harvard Brain Tissue Resource Center is available (1-800-BRAIN BANK) so that arrangements for donation can be made in as straightforward a manner as possible. Because the cost of autopsy is not covered by health care insurance, The Autism Research Foundation in Boston has agreed to cover pathology expenses related to the donation up to $300 (generally, fees do not exceed this amount).

To obtain further information in regard to the research projects being conducted by the ARC or the work of The Autism Research Foundation, please contact Mr. Neel Madan at the address or phone number listed below. Requests for research proposals are encouraged and should be directed to the Autism Research Consortium in care of Mr. Madan.

How to Contact Us:
The Autism Research Foundation
Suite W701, Moss-Rosene Lab
715 Albany Street
Boston, MA 02118

(617) 534-5286

e-mail: tarf@ladders.org