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October 2012 


In This Issue
Winning Bidder will Support ARI & Walk the Red Carpet at Twilight Premiere
Top Speakers Set to Convene at Fall Conference Next Week
Temple Grandin Meets with ARI's AGI Team
ARI Think Tanks - Sidney M. Baker, M.D.
Join Us Next Week
Fall 2012 Conference
Orange County, CA
Oct. 11-14 
General, Science, Adult Services 
& Practitioner Sessions

Want to see what happens at the Conference?
View free lectures from past conferences online - including the latest lectures from our Spring 2012 conference in Newark.
Support ARI & Walk the Red Carpet at the L.A. Premiere of Twilight: Breaking Dawn Part 2 November 12th

Be the first to see the world premiere of the highly anticipated final installment in the Twilight
series (premieres nationwide Nov 16).

Bid to win two tickets to the exclusive screening of the premiere being held at the Nokia Theater at LA Live on November 12, 2012. You and a friend will live it up like a celebrity, walking the red carpet before the movie, sitting in assigned VIP seats for the premiere, and attending the private after-party! 

All proceeds from this auction will benefit the Autism Research Institute. Our sincere thanks to Lionsgate Films for this generous donation to help support research that makes a difference.

Live in Southern California?
Print this Flier and Help Us Spread the Word about next Week's Fall Conference
Live in Southern California? Print this flier and help us spread the word about the conference ARI is pleased that Ken Cook - president and co-founder of the Environmental Working Group (EWG) - has joined our speaker lineup, and will be on stage Oct. 12th to provide a special presentation titled "Ten Americans." 
Stories in a Snapshot - see them all in person at our Networking Party Saturday, Oct. 12th

Last summer, we invited ARI families to submit images of their loved ones with ASD for our 'Stories in a Snapshot' contest. We received hundreds of beautiful Images and will be suing them in the months and years to come on the ARI website and in printed materials.  


In the meantime, we have been sharing them daily on our Facebook page and will be featuring many more at our Networking Party at the Fall 2012 ARI Conference at the Hyatt Regency Orange County next week. Please join us for this very special event to connect with parents and professionals and get an exclusive first look at the photos. Register Now 


We will share this presentation online after the event for those who are unable to attend.   


Have a photo you'd like to share and didn't get to submit for the contest? Email it to us in .jpg format

Creating Awareness & Funding Research That Makes a Difference: ARI's Million Dollar Puzzle Project  

puzzle pieces 

Launch your Puzzle Piece campaign today to promote autism awareness in your community. The colorful pieces cost only a dollar, and all proceeds go to the Autism Research Institute. It's easy: we send you a kit with everything you need - you simply pass it around the office, take it to local stores, or sell pieces at meetings and events. Just about everyone will give a dollar to help this great work.    

Autism Puzzle Pieces have been distributed in 601 cities, and we have forwarded more than $140,000 to ARI!

Join Our Mailing List
From the Director:  

Our big Fall conference is literally around the corner (next week), and we are very excited about the new speakers and all of the presentations. As many of you know, we are constantly assessing and responding to the needs of the autism community. Learn more about the conference below. In addition, Dr. Bernard Rimland's son, Mark, will attend the conference on Saturday, and we will be unveiling several of his new note cards.


Last month many of the people associated with the Autistic Global Initiative (AGI) and I met with Temple Grandin; it was a very productive and enlightening meeting. (Note: AGI is a program of ARI, run by adults on the spectrum who are collaborating on many adult-related initiatives and projects.)


Last week ARI released a new version of its smart-phone app for Apple (iPhone, iPad, iTouch) devices. The app contains a revised edition of the paper titled "Advice for Parents of Young Autistic Children," written by James Adams, Temple Grandin, Bernard Rimland, Jane Johnson, and me. The app also includes ARI's popular Autism Treatment Evaluation Checklist (ATEC). (Note: the portion of the app that used to charge a fee is now free.)


Looking forward to seeing you in Garden Grove next week.

Steve Edelson, Ph.D., Executive Director

Autism Research Institute  

Top Speakers Convene in Orange County for the Fall ARI Conference Next Week - Join Us!

cs2 ARI's Conference has the reputation of providing the latest information, the kind that reduces roadblocks in individuals with autism and pries open the door of possibility and hope. That's why thousands of parents and professionals have attended our conferences over the past 16 years and why many will be joining us next week at our Fall 2012 Conference. We hope you can join us too. 


With more than 40 leading experts from around the world, hands-on learning opportunities, continuing education opportunities for professionals and CME-approved seminars for licensed healthcare providers and nutritionists, these must-attend events should be on your calendar. Register with confidence: presenters are invited to our conference only after their presentation has been reviewed by doctors and scientists at one of our annual think tanks. 

But the presentations are only part of the reason to attend--time with others who are engaged in the same struggle as you is invaluable. 


Pre-register online for Buddy Discounts and Angel Fund Rates (discounts aren't available onsite).  

Pictured presenters include (top to bottom): Martha Herbert, MD, PhD; Nancy O'Hara, M.D.; Ali Carine, D.O.; Robert Hendren, D.O.; Suruchi Chandra, M.D.

ARI's AGI Team with Dr. Temple Grandin
Dr. Temple Grandin (front, center) met with members of ARI's Autistic Global Initiative (AGI) last month in Colorado.
Tanks for Thinking, Containers for Connecting, Havens for Heretics and Powwows for Professors - ARI's Think Tanks 1995-2012

By Sidney MacDonald Baker, MD



The tower and the trenches. The Autism Research Institute's first think tank was in response to the suggestion of Candace Byers, the mom of one of my patients. Soon thereafter, over lunch with Bernie Rimland at Cobb's Mill Inn in Weston, CT I said, "Bernie, I am finding all sorts of biochemical, immune, digestive, skin, and other problems in my autistic patients. Could we get some smart people together to help sort out questions that are over my head?" I suggested my biochemist friend Jon Pangborn PhD, and Bernie found about two dozen others to join us in Dallas in 1995 for what turned out to be the model for ARI's future think tanks and meetings. Thirty parents, researchers, and clinicians shared breakfast, lunch, and dinner over a three-day weekend. The conversations lasted from dawn to bedtime, and egos and preconceptions were left at the door. We found common ground among attendees with very different backgrounds, from the height of the ivory tower down to the trenches of clinical practice and parenting.


Connections: Among the options that would open to parents and practitioners, we hoped to find priorities for choosing laboratory tests to navigate the biochemical, immunological, and toxicological landscape of autism. A collective view was formed from our many vantage points, now that we had a safe container for forming friendships, for advocating safety for autistic adults and children, for thinking, and birthing a new consensus. We were sobered by a very different consensus, one that had placed full blame first on mothers, and then on genetics. We sought not to put a finger on autism's roots, but rather to examine the connections among the web of features that our conversations revealed. Meanwhile we established enduring connections among ourselves. That first meeting put the finger on Jon and me to write a report of our consensus, focusing on the relative values of lab tests to illuminate individual options for assessment. We sketched a collective picture of what was soon to be recognized as a dramatic increase in incidence, with biological elements predicted by Dr. Rimland in his 1964 book, Infantile Autism. Dr. Rimland came up with the name Defeat Autism Now! (DAN!). The word "biomedical" became attached to a clinical approach that focuses not on the disease, but the individual. The word "protocol" entered the title of the publication that Jon and I wrote and, unfortunately, became associated with further editions aimed at treatment considerations where "protocol" - with its implications of standardization - is inappropriate. We have since shed both the DAN! name and the use of "protocol" to describe clinical options described by ARI.


From bedside to bench: "Bench-to-bedside" describes the usual path from research to clinical application, as honored in modern medical innovation. The think tanks opened a door to a fruitful reverse in direction. The use of a form of vitamin B12, (MethylB12, or MeB12) provides an example: when Paul Cheney MD and I discussed the biochemical and immunological similarities among his chronic fatigue syndrome patients and my autism patients, he told me of the benefits of concentrated injections of vitamin B12. I found the shots too painful for children, but I later mentioned the idea in a think tank in Boston in 2002. Then Jim Neubrander came up with methyl B12 in a painless preparation compounded by Hopewell pharmacy. Richard Deth joined us in a subsequent think tank in Philadelphia and explained how high dose MeB12 helped break the vicious cycle of damage to detoxification chemistry by the very toxins (such as heavy metals) that such chemistry is supposed to take care of. He suggested that Jill James be invited to the next think tank to finish the job of explaining sulfation chemistry's role in the core issue of detoxification, oxidative stress and inflammation. Gifts from parents funded research with participation from some of the think tank clinicians, and soon Dr. James published the first of a series of papers explaining the science and validating the use of MeB12, folinic acid and betaine hydrochloride (TMG) in a large proportion of individuals with autism. So each think tank stood on its own, but they formed a stream of information to scientific research.  


Efficient trust: The interval between seed and flower, of a clinical observation becoming practice, is usually 20 years (for instance, as it was in the case of folic acid for prevention of certain birth defects). MeB12 for autism took a mere three years because the relationships that evolved in the think tanks brought the element of trust to the delicate process of birthing an idea. The treatment path of each individual within the spectrum begins with listening, which is the central theme of the think tanks. We have not created a powwow for professors--these think tanks have been more like a haven for heretics, where we could let down our guard against the barbs of those medical colleagues with a fundamental misunderstanding of what we are doing.


Tolerating the uncertainty of individuality: The clinicians in our think tanks are--or are on their way to becoming--practitioners of a heresy that is beginning to take root next to mainstream medicine. The basic metaphor of that mainstream springs from a confusion between name and cause, where "autism" is taken to be the cause of problems of speech, behavior and social interaction in children. Autism is only the name of the problem; the causes lie in a web of factors that catch different children in different ways, so that neither MeB12 nor any other treatment is helpful for every child. Tolerance of the uncertainty inherent in individuality is imposed by seeing each patient as unique, and each as deserving of therapeutic tailoring. That tailoring first requires grasping individual narrative and lab tests, and then trying on options until a proper fit is shown by each patient's response. That uncertainty produces a bond among clinicians who gain confidence from sharing stories with others of like mind and enquiring spirit.  


Questions to answer: The best think tanks over the past 17 years have been those where the eyes, ears and imagination of the researchers have witnessed our sharing of our stories and our questions. Those of us who had faced the chilly skepticism of academic colleagues found a warm embrace, heated critique, and affectionate consideration of raw clinical observation. We are forever grateful for the foundation built by Bernie Rimland and Steve Edelson, and to all who have supported ARI with funding for the think tanks that have been--and will continue to be--such a fertile nursery for options responsive to those two basic questions: "What is the next best step for this child?" and "Have we done everything we can for this child?"

A replay of Dr. Baker's Sept. 2012 webinar, "It's Not That Complicated: Maps for Navigating Paths for Healing," is available on the ARI website. Watch Now 

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