ARI: Moving Forward (2011)
The Autism Research Institute (ARI) has been a leader in the autism field for over 40 years. Founding director Dr. Bernard Rimland paved the way for the field of autism research. Much of ARI’s success has been due to its effort to build a network among scientists, clinicians, and families, to distribute information, and to support forward-thinking, meaningful research. As Dr. Rimland would often say, we focus on “Research that makes a difference.”
With ARI, he established a tradition of careful focus on the needs of all aspects of the community, and we continue to follow his direction by modifying our plans and adapting to the changing landscape as the demographics of autism evolve. This coming year we will press on; when tough decisions need to be made, we will always ask the question “What is in the best interest of those with autism and their families?”
Since Dr. Rimland’s passing four years ago, we have sponsored biannual conferences, clinician seminars, and think tanks, and published our hardcopy quarterly science newsletter. We also established two toll-free call-in centers, one in English and one in Spanish; began a monthly enewsletter; developed a rural outreach program; started translating key articles; and began a formal network with other autism organizations.
The experiences and challenges between 2007 and 2009 were enlightening and instructive, and we were consequently able to build a solid foundation from which to move forward. We feel it is timely to describe some changes instituted this year, and our plans for the future.
Besides maintaining and expanding our ongoing programs, we've set out to establish new initiatives. We overhauled our popular website, autism.com, making it easier to navigate and to search for information. We translated more documents, and expanded to fifteen languages. Along with our “ARI Support” online discussion group, we established two more listservs, including one for parents of older children and adults (ARI-OKA; Older Kids and Adults), and one for parents of recovered children (ARI-Recovered).
We expanded our funding of tissue banks to three centers: the Brain and Tissue Bank for Developmental Disorders at the University of Maryland; the Digestive Function Laboratory Repository, for tissues from patients with and without autism at Mass General in Boston, Massachusetts; and a blood serum/plasma, blood cell, and urine bank of non-autistic healthy control specimens at The Health Research Center/ Pfeiffer Treatment Center.
ARI launched the Adults with ASD ARI E-Bulletin, a quarterly e-newsletter updating relevant information regarding adult issues. We also established an autism information app for smart phones (iPhone/iTouch/iPad and Droid).
Inspired by the success of a consensus report on gastrointestinal problems co-sponsored by ARI and published in Pediatrics (January 2010), this year we sponsored two more consensus meetings. One focused on early diagnosis and early intervention, and the second on seizures (co-sponsored by AutismOne). Reports for both consensus meetings will be submitted for publication in 2011.
And finally, ARI was instrumental in establishing the Global Autism Collaboration (GAC), along with several other autism organizations in the U.S. and abroad. The goal of the collaboration is to establish a network of as many autism organizations worldwide as possible, to communicate, share information, and support one another. The Global Autism Alliance (GAA) is another way ARI is working to build a network of autism organizations throughout the world. In contrast to GAC, which focuses on information-sharing and support, the aim of GAA is to foster partnerships on specific projects, such as international webinar conferences, professional trainings, the networking of clinics globally, and much more.
Changes in 2011
- Because the name “Defeat Autism Now!” does not accurately describe the medical approach to understanding and treating autism, and because some people have been offended by the phrase, ARI will no longer use the name. (As one person with ASD wrote, the name feels like a “personal affront, that I am not good enough as a human being, and that, because we are not neurotypical, people with autism need to be defeated.”) Furthermore, the Divers’ Alert Network owns the copyright for “DAN!,” and they have requested that we no longer use it. In the future, our biannual conferences will simply be called ARI Conferences.
- For the past several Conferences we set out to raise the level of presentations with improved integration of good research as our mission; the feedback from both scientists and parents has beenvery positive. We plan to add a one-day adult track at our next conference in Atlanta (April 28th-May 1st, 2011). In the past, our three-day general session focused mostly on biomedical issues.
- After extensive conversations with parents who have traveled this road and succeeded in recovering their children from autism, we have expanded the general session; our plan is to provide parents with a game plan/blue-print on how best to understand and treat their children. We will be adding information concerning sensory and behavioral interventions, in addition to a one-day diet-track for parents.
- Based on these same conversations with parents of recovered children, we determined that it’s time to remember our roots and focus more attention on nutrition and nutrients. Toward the endof his life, Dr. Rimland had some concern that we were losing sight of the core treatments, such as vitamin B6 and melatonin. We will continue to sponsor seminars for clinicians at our conferences; the presentations will concentrate more on nutrition-related treatments, while acknowledging that some conditions require medications that can only be provided with a prescription.
- We have resolved to “freeze” the clinician registry in 2011; at the end of the year, the list will be removed from our website. There are many reasons why we have chosen to do this: althoughclinicians receive similar and consistent information at the seminars, there is no uniform way patients are subsequently treated, even acknowledging individual differences; many perceive the clinician list as a list of recommended doctors--in reality, the list simply contains the names of professionals who attended our clinician seminars. We do not certify them, and as a result, we cannot assure people that every practitioner on the list always provides the highest quality service.
- We do know that families need a way to locate quality practitioners in their community, and we have added a page of advice on that process to our website. We’ve discussed these changes with two of the founding members of Defeat Autism Now!, Drs. Sidney Baker and Jon Pangborn, and they support this new direction. We would like to thank Maureen McDonnell, R.N. and Jaquelyn McCandless, M.D. for establishing the clinician seminar, and Drs. Elizabeth Mumper and Nancy O’Hara for developing and leading the seminar through 2009.
- Historically, little effort has been made to find solutions for adult issues, because for so many, adulthood seemed far-distant. However, the concern is now an immediate worry for many families. ARI will establish a new adult program during the first part of the year, made up entirely of adults on the spectrum. They will assist ARI in developing initiatives to help the adult community.
- And finally, we are very excited about the ongoing analyses of Dr. Rimland’s E-2 Diagnostic checklist. Since the mid-1960s, ARI has distributed the checklist to thousands of families throughout the world; the database contains over 40,000 cases. Bernie Rimland’s dream was to someday analyze the data to uncover subtypes or subgroups of autism. If this can be accomplished, researchers will finally need to acknowledge the variations within the autism population. It is hoped they will stop lumping everyone together when analyzing their data. It’s very likely that each group will have a different underlying cause, and possibly a unique set of effective treatments. Our initial findings are very encouraging, and we plan to focus much of our resources on this project.
At ARI we are committed to leaving no stone unturned, and to considering a variety of treatments that might help those on the autism spectrum. We so much appreciate everyone’s support throughout the years, and we hope that the changes within ARI will truly benefit people on the autism spectrum and their families.