THE AUTISM RESEARCH INSTITUTE (ARI)
The Autism Research Institute (ARI) is the hub of a worldwide network of parents and professionals concerned with autism. ARI was founded in 1967 to conduct and foster scientific research designed to improve the methods of diagnosing, treating, and preventing autism. ARI also disseminates research findings to parents and others worldwide seeking help. The ARI data bank, the world's largest, contains over 40,000 detailed case histories of autistic children from over 60 countries. ARI publishes the Autism Research Review International, a quarterly newsletter covering biomedical and educational advances in autism research.
THE AUTISM RESEARCH INSTITUTE AND DEFEAT AUTISM NOW (DAN)
Who We Are and What We Do
When the phone rings in our office, callers often ask two questions. The first is, â€œWhat is ARI?â€ The second is, â€œWhat is Defeat Autism Now!?â€
Now that Iâ€™m sometimes on the receiving end of those calls, I realize that the answers to these questions arenâ€™t so simple. If youâ€™re a parent whoâ€™s new to autism, or a parent or professional who is just discovering our Institute and its work, hereâ€™s a quick explanation of what ARI and Defeat Autism Now! are, and what both are doing to help children and adults with autism.
What is the Autism Research Institute (ARI)?
The story of ARI begins with Dr. Rimlandâ€™s son Mark, who was born in 1956 and diagnosed with autism at the age of two. At the time of Markâ€™s diagnosis, doctors blamed unfeeling â€œrefrigerator mothersâ€ for autism. Dr. Rimland immediately recognized that this theory was both wrong and terribly destructive. He dedicated the next several years to researching autism, an effort culminating in the publication of his 1964 book, Infantile Autism, which demonstrated conclusively that autism was a biological disorder and ended the era of parent-blaming.
In the course of his research, Dr. Rimland discovered that applied behavioral analysis (then called behavior modification) was an outstanding intervention for autism. He founded ARI in 1967 to spread the word about this then little-known intervention, as well as to foster the search for effective biomedical treatments.
From these beginnings, ARI grew into an international clearinghouse and research organization that now leads the way in finding safe, scientifically proven treatments designed to correct the root causes of autism. Today, our ever-expanding agenda includes:
* Conducting, funding, and facilitating cutting-edge research on effective treatments
* over one million dollars worth in the past 1-Â½ years (see Defeat Autism Now! below). ARI focuses on funding state-of-the-art treatments that can help autistic children today.
* Maintaining two websites, autism.com and autism.org, which are the Internetâ€™s largest resource for biomedical and educational information on autism. This material, nearly all of which is free, is also being translated into several languages.
* Collaborating with the National Institute of Child Health and Human Development/University of Maryland on a whole-body tissue bank to provide research material for scientists investigating the systemic causes and effects of autism.
* Compiling parent surveys to determine which treatments for autism are beneficial and which are ineffective or even harmful.
* Publishing an e-newsletter and quarterly research review newsletter.
* Conducting a rural outreach program to serve areas with few autism resources.
* Creating and â€œgrowingâ€ a powerful network of parents and professionals involved in identifying and exploring new treatment avenues.
* Signing formal agreements with other autism organizations to allow us to combine our resources and maximize our services.
* Running the Autism Resource Call Center (1-866-366-3361, toll-free). This service provides free information and support for parents.
* Offering logistical support for the Autism Network for Hearing and Visually Impaired Persons.
* Funding the distribution of a physician awareness handbook for all pediatricians west of the Mississippi (http://www.HelpAutismNow.com/).
This year marks ARIâ€™s 40th anniversary, and we are involved in more important projects than ever before. We also work hard to maximize the value of every dollar contributed to ARI. Charity Navigator gives ARI its highest rating for fiscal responsibility.
What is the Defeat Autism Now! Project?
As ARI grew, Dr. Rimland began to identify treatments that aided autistic childrenâ€”for example, high-dose vitamin B6 and magnesiumâ€”but the slow pace of these discoveries frustrated him. A turning point came in 1994, at a meeting with Sidney M. Baker, M.D., who described his own frustration in trying to pull the different threads of autism symptomsâ€”biochemical, immunologic, and gastroenterologicalâ€”into a unified whole that would point the way to new biomedical treatments.
Dr. Baker suggested a solution: a revolutionary project to bring together leaders in every area of autism research in order to share knowledge, spark new ideas, and jump-start progress into finding effective biomedical treatments and even cures for autism. Dr. Rimland immediately accepted this challenge, and with the help of Dr. Baker and Dr. Jon Pangborn, the Defeat Autism Now! Project was born.
Since that time, Defeat Autism Now! has brought together hundreds of experts in biannual think tanks that are accelerating the progress of autism research and taking it in exciting and rewarding directions. Defeat Autism Now! currently hosts two standing-room-only conferences each year, along with mini-conferences in the U.S. and elsewhere. (Video presentations from the large conferences can be watched free of charge on our website.) Other Defeat Autism Now! projects include:
Dr. Rimland believed that the greatest advances in the field of autism occur when professionals collaborate with parents, who are the true experts on what works and what doesnâ€™t. As a result, clinicians and researchers affiliated with Defeat Autism Now! do something remarkable: they listen to parents and to other health professionals who report success with investigational treatments or who offer ideas about possible interventions. They investigate the scientific basis for these treatments or ideas, often do clinical trials and analytical studies, discuss the results in think tank forums, and extensively evaluate each approachâ€™s safety, efficacy, and appropriateness. If a treatment or strategy passes muster, it is formally presented at a think tank and then at a general conference.
The goal of this rapid, intense study is to put information quickly into the hands of the parents and professionals who need it. Typically, Defeat Autism Now! participants can accumulate enough solid information about a new treatment within a year or two to know if it is both valuable and safe.
Because there are no guarantees that any intervention can help a particular child, Defeat Autism Now! does not tell parents and doctors what approaches to use. Instead, we empower parents and physicians by giving them the information they need to make informed treatment choices. The result: growing numbers of autistic children who are making great strides, and many who are recovering.
The work of ARI and Defeat Autism Now! is leading to exponential advances in our ability to treat autism. As Dr. Rimland always said, â€œARI funds research that makes a difference!â€ We hope that you will join the vast network of peopleâ€”parents, physicians, researchers, and donorsâ€”who are investing in the future of autistic children and their families by participating in the work of ARI.
* Publishing Autism: Effective Biomedical Treatments (updated in 2007), by Dr. Baker and Dr. Pangborn.
* Spreading the word that recovery from autism is possible for many children. Hundreds of parents of recovered or nearly-recovered children are now actively helping us to overturn the myth that autism is untreatable and always incurable. This summer, I began touring the country to collect documentation of their childrenâ€™s remarkable recoveries.
* Publishing books on effective autism treatments, including Recovering Autistic Children (edited by Dr. Rimland and myself) and a book by Judith Chinitz and Dr. Sidney Baker on the Specific Carbohydrate Diet, We Band of Mothers.
Offering clinician training (we are the only organization providing this service).
LIST OF ACCOMPLISHMENTS IN 2010
The Autism Research Institute (ARI) has a 43-year track record of pioneering leadership in the autism field. We provide families and professionals with the information needed to make informed choices to support individuals on the autism spectrum of all ages. ARI accomplishes these goals by conducting and sponsoring cutting-edge research and disseminating these findings.
ï‚· Adults on the Autism Spectrum
o ARI continued to sponsor monthly conference calls attended by parents, professionals and people with autism to discuss housing issues and other concerns specific to adults with ASD.
o We also initiated a quarterly e-newsletter focused on topics related to adults.
o ARI sponsored a retreat, attended by over a dozen adults with autism spectrum conditions, to
discuss ways in which ARI can better serve the autism community.
o We filmed several round-table discussions on adult-related issues, featuring people on the spectrum, parents and professionals. The topics included health issues, housing, employment, and law enforcement.
ï‚· Parents and professionals can reach a live person for information and support at either of our two toll-free call centers, one for English speakers (866.366.3361) and one for Spanish speakers (877.644.1184, ext. 5). Callers can also reach ARI directly (619.281.7165).
ï‚· ARI continued to moderate its popular Yahoo Internet discussion group for parents, and we began two additional support groups including one for parents with older kids and adults and one for parents of recovered or near-recovered children.
ï‚· More than 550 professionals attended our clinician and nutritionist seminars.
More than 550 professionals attended our clinician and nutritionist seminars.
ï‚· We continue to translate our publications into 15 languages, including Spanish, French, Japanese, Italian, Chinese, Russian, Armenian, Hindi, Turkish and Arabic. One of the key papers translated was a review article on gastrointestinal problems in autism that appeared in the journal Pediatrics.
ï‚· ARI redesigned its poplar website, www.Autism.com.
ï‚· We published an app on autism for mobile phones, including iPhones and Droid.
ï‚· ARI awarded over $350,000 in grants to scientists whose work will have a direct impact on the lives of those on the autism spectrum.
ï‚· We sponsored a think tank, attended by approximately 60 researchers and experienced medical clinicians. In order to make considerable progress in the field, ARI feels it is critical for scientists and experienced physicians to meet and discuss issues related to treatment.
ï‚· We also support active dialogue among researchers and clinicians in a private Internet discussion group.
ï‚· ARI helped fund and promote a tissue bank for the National Institute of Child Health and Human Development at the University of Maryland, and more recently, at the Digestive Function Laboratory Repository at Massachusetts General Hospital in Boston. Additionally, this year we began funding a specimen bank for non-autistic individuals to provide proper comparison controls for researchers.
ï‚· ARI funded a major consensus meeting on early diagnosis and early intervention. In collaboration with Autism One, ARI also sponsored several consensus meetings on seizures. Reports for both consensus meetings will be submitted for publication in 2011.
ï‚· We also offered sponsorship to the annual International Meeting for Autism Research (IMFAR) conference, one of the top scientific conferences on autism.
ï‚· We continue to publish our quarterly newsletter, Autism Research Review International, which summarizes current biomedical and educational research.
ï‚· Dr. Edelson, ARIâ€™s director, began several research projects this year, including studies on sub-typing autism, self-injurious behavior, and diagnosing and treating ambient visual problems.
NETWORKING WITH OTHER AUTISM ORGANIZATIONS
ï‚· ARI was instrumental in establishing the Global Autism Collaboration with the help of several other autism organizations. The aim of this collaboration is to network and to provide support to autism organizations worldwide.
ï‚· Additionally, ARI sponsored monthly conference calls with representatives from over 15 countries worldwide, including Armenia, Australia, Barbados, Brazil, Canada, Chile, Dubai, France, Ghana, Hong Kong, India, Italy, Japan, Mexico, Nigeria and Puerto Rico.
The staff at ARI are dedicated to improving the quality of lives for families and individuals with autism spectrum disorders. We rely primarily on the generosity of its donors to continue helping individuals with autism spectrum disorders and to advance autism research. We need and appreciate your support.
ARI is a 501(C)(3) non-profit organization, Fed ID No. 95-2548452,
and donations are tax-deductible.
ARI's work relies on charitable contributions from concerned individuals and organizations. We have received a four-star (highest) rating by Charity Navigator for fiscal management (www.CharityNavigator.org). This is our sixth consecutive year to be honored this way
by the non-profit sector.