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February 2009

Logo July 2008

In This Issue
Join our New ARI/Defeat Autism Now! Listserv
Take ARI's Treatment Effectiveness Survey
A Letter From Thoughtful House Center for Children
Grandma Extraordinaire: Defeat Autism Now! Outreach Coordinator Nancy Cale
Latest Research Findings ... No Surprise to Us
Join Us for an Introduction to the Defeat Autism Now! Approach April 17
Sidney MacDonald Baker, MD Sheds Light on Autism this May

shield

2009 Defeat Autism Now! Conferences
Registration is Open!
 
Spring Defeat Autism Now! Conference
April 16-19
Atlanta, GA

 
Level I Clinician Seminar at Autism One
May 21 - 22, 2009
Chicago
Register
 
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SAVE THE DATE:

Defeat Autism Now! Mini-conference
June 13 - 14, 2009
Oklahoma City, OK

Defeat Autism Now! Mini-conference
Sep. 12 - 13, 2009
St Paul, MN

Fall Defeat Autism Now! Conference
Oct 8 - 11, Dallas, TX
New ARI/Defeat Autism Now! Listserv Online Now
Join the Discussion Online
 
ARI has started a parent-support listserv, intended as a forum where parents can compare notes, laugh, cry, and share recipes and resources--for anybody interested in or committed to the Defeat Autism Now! approach to treatment for autism spectrum disorders.  For more information, click here.
Take ARI's Treatment Effectiveness Survey
 
Please take a moment to fill out the Autism Research Institute's "Parent Ratings of Behavioral Effects of Biomedical Interventions." To include your responses in the next release of the Treatment Effectiveness Survey please respond by February 8.

Here's why: for 30 years, ARI has collected and tabulated parent ratings on the usefulness of treatments. More than 25,000 parents before us have helped make this survey the premier information exchange of what works and what doesn't in treating autism.

Results are posted online as a general guide; the survey is also instrumental in developing research initiatives, so it's of incalculable value to both parents and scientists. Thank you for adding your piece of the puzzle to this impressive resource.
 
Submit treatment ratings online
 
View parent ratings:
- Autism
- Asperger Syndrome

Gear Up for Autism Awareness Month - Order Your Puzzle Piece Kits Now   
Now's the perfect time to order your free Puzzle Piece kits and prepare to launch a campaign in your community. Each colorful piece is just a dollar, and all proceeds go to the Autism Research Institute.  
 
Treatment Ratings
Our Partners
Autism Society of America 
 
Generation Rescue
 
Medigenesis: A New Beginning in Medicine
 
mindd
 
NAA
 
safeminds
 
Schaefer Autism Report
 
TACA
 
Treating Autism
 
Unlocking Autism
 
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The Autism Research Institute is also collaborating with the following international autism groups:

Defeat Autism Now! - Europe
(headquarters in Bologna, Italy)
 
Canada
 
France
France
 
 
Mexico
Mexico
 
About the ARI E-Newsletter:
This newsletter is compiled, written, and edited by ARI parents, and we welcome your input. If you have questions you would like answered, a story you would like to submit, or an idea for something you would like to see discussed or explained, please contact us.
 
Contributing Editor:
Jane Johnson
 
Technical Support:
Denise Fulton
 
Additional Assistance:
ARI maintains a toll-free line with information, contacts, and access to resources available through the Autism Research Institute. Call: 866.366.3361  
Join Our Mailing List
From the Director:
 
dr. edelsonDr. Rimland's spirit guides us still. Over the past two years, I have assembled a group of professionals and parents from around the country to help me run The Autism Research Institute (ARI) and our Defeat Autism Now! program. I would like to thank each of them personally for their hard work and dedication to the autism community. And it just so happens that almost all of them had met with Dr. Rimland.
 
I visit with Dr. Rimland's son, Mark, almost every day, and just like his father, Mark's good humor and positive attitude on life always brightens up the day. If you are in the San Diego area, please stop by and visit Mark at the Edgeware Gallery. He is the resident artist, and he usually works at the gallery on Sunday afternoons. See www.EdgewareGallery.com

On another note, ARI continues to develop strategic alliances worldwide. We are now networked with autism organizations in Australia, Canada, France, Italy, Japan, Mexico, Nigeria, and the United Kingdom. Our message, that autism is treatable, is spreading throughout the world.
Stay warm.

Steve Edelson, Ph.D.
Director, Autism Research Institute
Letter from Thoughtful House Center For Children
 
thoughtful house logoAs new parents we face decisions great and small; to inform them, our vocabulary expands to include new ideas, new words and phrases like "sippy cup," "Diaper Genie," and "nasal syringe." Open-minded, we spend hours researching car seats, organic mattresses, day care, the benefits of sleep schedules, and play groups.
 
But perhaps the most important decision you'll make is how to vaccinate your child. Educating yourself on the risks and benefits is the first and most crucial step. Your baby's doctor probably assumes that vaccines and the CDC-recommended vaccine schedule are safe, but you've heard rumors that there might be a connection to autism.  Dr. Ari Brown has written an article called "Clear Answers and Smart Advice about Your Baby's Shots," that makes it sound like there's absolutely nothing to worry about.
 
What is the truth?
 
The American Academy of Pediatrics and the American Academy of Family Practitioners believe that vaccines are one of the most significant public health measures of all time.  We couldn't agree more.  But are there unnecessary risks for the individual? Don't forget that antibiotics were rightly greeted with similar enthusiasm, but we now know that antibiotics can backfire, and that more isn't always better.  Is it possible that the same can be said for vaccines?
 
Vaccines are recommended, licensed, and assessed for safety by federal authorities including the FDA and CDC, but how comprehensive are the safety tests?  We know from one large University study that early administration of the DTP shot is implicated in the development of asthma.  Is it true that serious side effects are so very rare?  Would the vaccine manufacturer's safety testing methods even reveal a link to autism, if there were one?
 
The vaccine-autism controversy persists because the appointed watchdogs are willfully ignoring evidence concerning vaccine safety issues; the AAP's response to parents' concerns has been to just insist more and more vociferously that vaccines are safe.  But denying it won't dispel the controversy.  Shouldn't they be insisting instead on really good testing?   The research to date is inconclusive.  No one can say yet with complete certainty that vaccines do or do not cause autism.
 
Nothing is more important than the health of our children; please read this article, print it out, and take it to your pediatrician. Share it with other parents. It will take you about the same amount of time to read as it takes to research that car seat, and it will let you have a more thoughtful and informed discussion about vaccines with your baby's doctor.
 

Thank you for your time and continued interest.
 
Thoughtful House Center for Children

With

ACT Today!
Age of Autism
Autism Action Network
Autism File
Autism One
Autism Research Institute
Autism Today
Autisme et troubles envahissants du developpement Montreal
Center for Autism and Related Disorders
Alan D. Clark, M.D. Memorial Research Foundation
Cryshame
International Chiropractors Association
Medical Veritas
National Vaccine Information Center
National Autism Association
NoMercury
SafeMinds
Schafer Report
Unlocking Autism
World Autism Association
nancyNancy Cale: Defeat Autism Now! Outreach
Coordinator and Autism Grandma Extraordinaire

Nancy Cale wears a lot of hats. Grandmother to Wynn - who is diagnosed with autism - Nancy devotes her time to supporting research and helping families coping with the day-to-day struggles of living with this disease. 

In addition to her leadership role as the co-founder and vice president for Unlocking Autism (the advocacy organization she helped found 10 years ago on Wynn's 4th birthday - Feburary 15th, 1999) Nancy serves as Outreach Coordinator for ARI's Defeat Autism Now! conference team. Her conference work is focused on promoting upcoming educational events to as many caregivers and providers as possible. It's a huge job: last fall, Nancy sent more than 20,000 brochures to regional centers, pharmacies, care providers, and support groups in California to spread the word about the fall conference in San Diego. 

She's now working to promote the spring Defeat Autism Now! conference in Atlanta. Thankfully, this one's much closer to home - she lives fairly close to the Renaissance Waverly (the spring conference site outside Atlanta); "We don't have much in our area - this will be a big draw."

Between conferences, Nancy walks the front lines of the autism community every day answering the toll-free support hotlines for The Autism Research Institute, Unlocking Autism, and the National Vaccine Information Center (NVIC). "All that matters is networking and focusing on the kids - working together." On distinctions between the groups she supports, Wynn's Nana says it's not a problem adding, "we are all searching for the answers together."

"You know just where they are at when their voice is quivering in that way - like they've fallen down a dark hole. You think: Maybe it's the day before they're going to meet the neurologist to get the diagnosis. I tell them: 'When you are sitting there in that office tomorrow and they tell you there's nothing you can do, you just take a deep breath, swallow it and smile. And know that I am filling up your inbox with information to help your child.'"
 
Nancy relates well with callers because she's shared their sorrow, describing how Wynn looks at her with his green eyes and asks, "Can you help me?" She holds to her enduring faith that the window of possibility for her grandson never closes: "He'll be 14 on this month, and the next intervention could be just the piece we need. It could be right around the corner. I know these doctors. I know how they're trying." 
 
Still, it's never easy. When her other grandkids get frustrated with autism, Nancy tries to help them understand that because he was first, he was exposed to things they were not. After Wynn's diagnosis, relatives did things differently to prevent recurrence in the kids that followed. Nancy encourages her brood, saying: "Wynn's your hero. Wynn's your soldier. He went first, and that may have saved you."
 
Nancy - thanks for your tireless work, year after year, to help spread the word that Autism is Treatable, keeping Dr. Rimland's vision alive.
Latest Research Findings ...
No Surprise to Us
By Jane Johnson 
 
JJohnsonOne-by-one, pieces of the autism puzzle are falling into place.  The difference between what we know now and what we knew five years ago is tremendous, with several new studies supporting what we've suspected for years.  Since study after study confirms that faulty immune response is a key feature of autism, perhaps someday soon it will be universally acknowledged that it's not a psychological disorder.
 
Rodney R. Dietert, Department of Microbiology and Immunology at Cornell, has two new review papers out, one in Chemical Research in Toxicology and the other in the Journal of Toxicology and Environmental Health, about the possible significance of early-life immune insult in the development of autism spectrum disorders.
 
At the very moment when the immune system is trying to establish its defense against later-life diseases, it is most vulnerable to toxins.  Dietert feels that because toxins might disregulate inflammatory cells in tissues such as the brain, they are a potential concern in neurological disorders like autism.  He writes, "Health risks are significantly increased following early life vs. adult immunotoxic exposure... health risks are not readily predicted when based on adult-exposure safety data or via the evaluation of an unchallenged immune system in developmental toxicity testing."

He proposes to explore immune irregularities caused by exposures to chemical substances that occur well before the diagnosis of ASDs.  He points out that there are certain "windows of opportunity" during the time around birth and prenatally when key developments must occur in various parts of the body (such that if an environmental insult occurs in a certain week it can have a very different effect than it would in the week before or the week after); he also thinks another fruitful area for future research is gender-based differences in reaction to environmental factors.

In other words, timing is everything when the body encounters a toxin, and it's crazy to think that tests for heavy metal toxicity in adults are in any way relevant to infants or children.  He goes on to say, "...a single toxicant may promote different immune-associated diseases that are dependent upon the specific window of early life exposure, the gender of the exposed offspring, and the genetic background of the offspring."

In conclusion Dietert states that early disruption of immune maturation appears to be strongly linked with autism spectrum disorders, which he terms "inflammation-associated pathologies."

ARI is proud to have partially funded research by Li, et al. resulting in the publication of "Elevated immune response in the brain of autistic patients" in the January 2009 issue of the Journal of Neuroimmunology.  The paper concludes that, "ASD patients displayed an increased innate and adaptive immune response through the Th1 pathway, suggesting that localized brain inflammation and autoimmune disorder may be involved in the pathogenesis of ASD." 

Any parent who has ever been to a Defeat Autism Now! conference has heard the speakers talking about skewing of the cells that influence immune responses, called Th1 and Th2; Li and his colleagues devised a way to measure the actual impact of immune mediation imbalances in the brain. They state that their findings suggest that children with ASD have a heightened immune response such as might be associated with brain inflammation and tissue death (cause unknown).

The skewing of the helper cells (Th1 and 2) can help determine whether a reaction is autoimmune or allergic in nature; Li comments that while his findings are quite different from those of other recent studies, his are based on information from brain tissue, whereas other methods, using blood samples, are not. In summary, Li et al. conclude that since inflammation is yet again indicated as a possible cause of autism, control of inflammation invites investigation as a therapeutic approach.

These studies will be discussed in greater detail in the next issue of Autism Research Review International Newsletter. To subscribe, visit the ARI Publications section of ARI's online store. 
 
Jane Johnson is the Director of Defeat Autism Now! and the co-author of Dr. Bryan Jepson's book Changing the Course of Autism.
Registration is Open for the Spring Defeat Autism Now! Conference
Join Us April 16-19th in Atlanta
waverly 
Why Atlanta? Why this conference if you're new to biomedical treatment?
Because Defeat Autism Now! conferences are the most responsive to your follow-up evaluations -- we pay close attention to them when designing our programs.  
Sixty-three percent of the people who attended Defeat Autism Now! in San Diego last fall had never been to an autism conference before, and many of them commented that they wanted more basic information, especially on dietary intervention.
Nutrition is the cornerstone of recovery, and since it's always good to begin at the beginning, we're devoting Friday afternoon in Atlanta (April 17th) to nutrition. (Remember that higher-level treatments often fail if the diet isn't sound.) 
The Friday program is designed to provide the best solid foundation for the presentations on Saturday and Sunday, and it's a great refresher course as well for you "old-timers."
 
Newcomers Mark Your Calendars for Friday, April 17
An Introduction to the Defeat Autism Now! Approach
 
 
MumperAutism is Treatable
 
Elizabeth Mumper, MD
Dr. Mumper explains the scientific background behind the medical problems evident in children with autism, such as will be discussed in detail during the Defeat Autism Now! conference.  She will describe the concept of treatable autisms: the idea that many biological processes might culminate in the behaviors we describe as autistic.  The focus is on intestinal abnormalities, metabolic dysfunction, immune dysregulation, detoxification impairments, neuroinflammation, and oxidative stress.

doreenTreating the Child as a Whole: How Biomedical and Behavioral Interventions Complement Each Other in Bringing About Growth and Recovery
Doreen Granpeesheh, PhD
Treatment approaches grounded in Applied Behavioral Analysis (ABA) are considered the forefront of educational interventions for children with autism.  While research supports a medical etiology for autism and studies are underway to identify exact medical pathways, many case studies already point to successful outcome with medical treatments.  ABA and biomedical practitioners have individually provided successful treatment models in developing a "best practices" model for autism.  The time has come for these two areas of practice to merge their efforts and integrate their practices toward the development of an effective and more powerful synergy.  
 
AFTERNOON NUTRITION PROGRAM
jmathewsNourishing Our Children: Evolving Diets for Autism
Julie Matthews, CNC
Dietary intervention for autism means eliminating problematic foods and adding nutrient-rich healing foods. This session will explain how dietary intervention helps ameliorate symptoms and begin healing. You will learn which nutrients are essential for children with autism, including macronutrients (fats, carbs, protein), vitamins, and minerals, and how they support biomedical intervention and the road to recovery. We will discuss nutrient-dense food ideas and strategies, as well as creative approaches for picky eaters (and the entire family). Beyond the basics of removing artificial ingredients and foods to which your child is sensitive, you'll learn to evolve your child's diet; we'll explore meal planning that includes vegetables, broths, and fermented foods. 
Achieving a Quality Elimination Diet Including Beneficial
 
danaNutritional Supplementation
Dana Laake, RDH, MS, LDN
The philosophy and research behind diet changes and nutritional supplementation provides the background for implementation. An overview of nutrient deficiencies common in children with autism is expanded to include the need for supplementation when eliminating specific foods in the diet and the impact of nutrient deficiencies on appetite problems, including food aversions. Guidelines are provided for determining which elimination diets are likely to be most successful for each child. With attention to priorities, a step-by-step approach to the gluten-, casein-, and soy-free baseline diet will be explained.

lipskiDietary and Nutrient Support for Digestive Disorders
Liz Lipski, PhD, CCN
More than 60% of children and adults with autism have GI imbalances that include irritable bowel, constipation, diarrhea, food sensitivities, malabsorption, failure to thrive, increased intestinal permeability, and dysbiosis. This session will focus on the interactive roles of the digestive and neurological systems in children and adults with autism. You'll learn how to recognize imbalanced digestion and absorption and how to assess digestive issues using food diaries and laboratory testing. We'll talk about some of the diets and supplements that help to rebalance the ecology of the digestive system to improve symptoms of autism. This is a practical session about tools that can be used immediately. 
 
levinsonTools and Strategies to Survive the Diagnosis, and Thrive Through the Recovery of an Affected Child
Andrew Levinson, MD
Though there have been tremendous advancements in biomedical interventions and a clearer clinical model has taken form, the dramatic level of psychological stress associated with the care of an autistic child by the parent and the clinician is rarely discussed.  Burnout impacts not only the affected child, but also the primary caregiver, the spouse, and other children in the family, with manifestations that are both obvious and insidious.  This presentation will offer insight and practical approaches, as well as effective techniques to revitalize yourself and increase the likelihood of your child's recovery. 
Events in the Community ...  
 
Anaheim Autism/Asperger Conference Feb. 14-15 
This is a comprehensive autism conference offering practical information for children and adults of all ages and abilities. It features more than 20 great speakers, including separate tracks on Biomedical, Behavior, Speech/Social, Yoga, Family Life, Sensory Integration, and Teaching.
 .
acaWhen:  
Saturday & Sunday Feb. 14-15
 
Where:
Anaheim Convention Center (3rd floor) 800 W. Katella Ave., Anaheim, CA, 92802
 
Learn more & Register Online:
Organized by:
Autism Conferences of America, in collaboration with:
  • Arizona State University - Autism/Asperger's Research Program
  • Autism Research Institute
  • Autism Society of California
  • Kirkman
  • TACA (Talk About Curing Autism)

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Treating Autism Sets 2nd International Biomedical Conference for March 12-14 in Bournemouth, UK 
 
Treating AutismThe 2009 conference will be the biggest autism-specific biomedical conference the UK has ever seen. With a host of expert speakers from across the globe -- as well as from the UK -- the Treating Autism team is pleased to announce its first six confirmed speakers - Bryan Jepson, MD, Dr. Natasha Campbell McBride, Professor Boyd Haley, Dr. T Michael Culp, and Karen DeFelice. Latest news is that Dr. Andy Wakefield will be Guest of Honour, speaking at the Treating Ourselves event on the 13th of March.

The Treating Autism Team is also proud to confirm Sandy and Tim Collins as speakers. This UK family has now officially recovered their son Eddie from autism, and they will be telling delegates how they did it.
 
 
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Shedding Light on Autism - Sidney MacDonald Baker, MD
May 15-17, 2009
Big Sur California
 
bakerSpend a weekend at Esalen with Dr. Baker, former Director of the Gesell Institute of Human Development, co-founder of Defeat Autism Now! and co-author of Autism: Effective Biomedical Treatment.
 
Treating the Unique Child: Private Options, Public Policy and the Autism Spectrum
will be an intelligent conversation leading to the ultimate question faced by parents, teachers, physicians, therapists: "Have we done everything we can for this child?"
 
This is a question Dr. Baker learned to ask in Nepal in 1959 when he apprenticed with Dr. Edgar Miller during a year off from his Yale undergraduate education. This question should concern those entrusted with public policy, where the one-size-fits-all approach is in direct conflict with the fundamental law of Nature: that each living organism is unique. Individuality has practical clinical implications, and demands a tailored approach for the individual, not a standard protocol. 
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