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June 2010

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In This Issue
New ARI Web Site Now Live
Recent Diet Study Yields Questionable Conclusions
Reality TV Auctions Art for ARI
Events in the Community

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SAVE THE DATE:
Fall 2010 Conference

Level 1 & 2 Clinician Seminars, Nutrition Seminar, Parent & Science Sessions
Long Beach, CA
Oct. 7-10, 2010
 
Details & Online registration will be available in July
 
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Spring 2011 Conference
Level 1 & 2 Clinician Seminars, Nutrition Seminar, Parent & Science Sessions

Atlanta, GA
April 28-May 1, 2011
 
Join the ARI Listserv
ARI offers a parent-support listserv, as a forum where parents can compare notes, laugh, cry, or share recipes and resources--for anybody interested in or committed to the ARI/Defeat Autism Now! approach to treatment for autism spectrum disorders. For more information, click here. 
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Join our Million-Dollar Puzzle Campaign 
Now's the perfect time to order your free Puzzle Piece kits and prepare to launch a campaign in your community.
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New Book Looks At Autism Through the Eyes of Siblings
 
siblings
 
Too often, siblings of special-needs children feel overlooked, so in the August 2009 edition of the e-news, we asked them to submit their stories.  Nineteen people of all ages responded, and Siblings; The Autism Spectrum Through Our Eyes was born. T
he brothers and sisters who wrote this book think it helps to know there are people who understand--really understand--what it's like to live with a sibling with autism; they talk about how they feel, in order that others might feel less isolated or anxious.

Their stories honestly recount the good, the bad, and the downright annoying. They explain how being 'the normal one' can be tiring, frustrating, and lonely, but equally rewarding; every story is imbued with the wisdom they've gained by learning to love their siblings for who they are.
 
The book costs $9.32 on Amazon.com--the contributors have kindly donated all proceeds to ARI. Buy Now
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Medigenesis: A New Beginning in Medicine
 
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Treating Autism
 
Unlocking Autism
 
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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 Editors:
Jane Johnson
Dave Gillerman
Stephen Edelson, Ph.D. 
 
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.
English: 866.366.3361
Español: 877-644-1184,
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From the Director:
dr. edelson
 

Summer is just around the corner. I don't know about most of you, but I am looking forward to the upcoming season.

 

As many of you might have noticed, last month the Autism Research Institute (ARI) launched its new website at www.autism.com. This website features a 'new look,' and is designed to help users navigate through the webpages more efficiently. We even uploaded a brief two-minute video introduction from me.Check it out! Note: There are still a few broken links on the site. Please be a bit patient. We're doing our best to fix them.

 

Given the popularity of smart-phone apps, such as those for Apple and Android, ARI will be producing autism-related apps throughout the year. You can learn about the apps at www.AutismApp.com. Spanish and French versions of ARI's current app will likely be available for download within a month. Additional apps will be listed on the webpage as soon as they are available to the public.

 

I am very proud to announce that my oldest daughter, Janae, will be graduating high school in a few weeks - next stop, college!


Steve Edelson, Ph.D.
Director, Autism Research Institute
ARI's New Web Site is Live at Autism.com
 
website 
ARI is dedicated to sharing information about the latest research with the public, and has launched an updated Web site at autism.com. The site provides a repository of information about the disease, including online assessment tools, free conference webcasts, answers to commonly asked questions, and our founder Dr. Bernard Rimland's newsletter archives.

The updated Web site was launched as part of our ongoing effort to remove roadblocks to information by providing it directly to parents and clinicians, and to spread the message that autism is treatable.
 

Efficacy of Dietary Intervention in Autism Requires Further Study
Small sample population in recent diet study renders questionable conclusions 
 
By Kelly Barnhill, CN, CCN - ARI Nutrition Director
 
Several recent publications - one, a review article and the other, a prospective study initiated in 2003 - have drawn attention to the question of efficacy and need for dietary intervention for those diagnosed with autism. This remains a complex and controversial issue, with parents and knowledgeable practitioners who recognize the appropriateness of dietary change often aligned against family members, pediatricians, therapists, and educators. Some issues to reflect on in the thoughtful evaluation of this topic are outlined below:
 
 
  1. Appropriate dietary intervention in autism is neither unsafe nor unhealthy. Many individuals with milk-protein allergy or lactose intolerance avoid all milk products and remain healthy. Those with celiac disease often avoid both gluten and casein proteins and remain healthy--in fact, regain their health. Some vegan families avoid gluten protein and consume a nutritionally complete diet. The concern here is that if appropriate dietary management for those with autism excludes proteins such as gluten, casein, and soy, it must provide nutrient density in the form of fresh vegetables and fruits, whole gluten-free grains, and pastured animal products. For most families, this means working with a qualified practitioner, at least initially, to ensure nutritional success.
     
     
  2. The primary reason practitioners recommend the elimination of proteins such as gluten and casein from a child's intake is gastrointestinal concerns. Many children we see have voluminous, extremely malodorous, loose stools, sometimes more than half-a-dozen times each day. Others experience extreme constipation - often moving their bowels less than once per week. When we see these children in my practice, we strongly urge their parents to consider casein and gluten removal as a first change for their child. In my opinion, we are not treating autism with this recommendation, we are treating a gastrointestinal concern in a child with autism. The distinction is important - both for parents and professionals. Most of the time, parents report that with removal of one or both of these proteins, their child's bowel movements normalize, and they often report behavioral changes as a result. (Interestingly, children with gastrointestinal concerns were not included in the much-publicized Rochester study.) 
  3. A recent NIH-funded study led by Dr. Susan Hyman, a physician in Rochester, was flawed in several ways. In particular, only 14 children completed the study over the course of 6 years; this is a very small sample size, and it is inappropriate to extrapolate the results in these 14 participants across the total autism population. Both researchers and clinicians recognize the need for larger participant numbers to establish a meaningful outcome. Second, participants eliminated gluten and casein proteins from their diets for a period of only 4 weeks. This is simply not long enough to be effective in completely eradicating protein antibodies from an individual's system. (We know from work with celiac and gluten-sensitive patients that it can often take six months to completely remove gluten protein from the body.) Third, the study reintroduced gluten and casein protein to children who weren't actually on a strict gluten- and casein-free diet - thus, seeing a challenge response or a negative response under these circumstances would be highly unlikely. The children never experienced a truly "clean" diet initially. And last, as noted in (2), none of the children in the study had gastrointestinal symptoms at the start.
  4. Gluten and casein protein are often not the only offenders in dietary intake. Many clients respond positively to the elimination of soy protein as well.  Without full knowledge of dietary intake of each Rochester study participant, we cannot speak to the quality of the child's diet or the inclusion of other likely dietary offenders. In our practice, some parents do report that they see no change when eliminating milk protein over 2-3 weeks. When dietary intake is reviewed with the family, we often discover in these instances that the parents substituted soy milk for cow's milk, and the child simply moved from 32 ounces of cow's milk per day to the same intake of soy.  Completely removing that soy protein allows us a more accurate assessment of a child's response to protein removal. Additional considerations include intake of processed foods, artificial ingredients, and other dietary compounds such as amines, oxalates, and lectins.
     
  5. The April University of Texas publication (lead author Austin Malloy) was not original research, but a review of 15 studies on gluten and casein protein removal for individuals with autism. The authors' conclusion on review of this body of work was that there is no evidence that protein elimination benefits children with autism. The only rational conclusion, then, in absence of positive evidence that dietary intervention does not work, is this: More work needs to be done. Unfortunately, these studies are expensive, complex, and time-consuming to properly create and manage.  An appropriate study must be larger in
    s
    cope than the recent Rochester publication, it must avoid casein, gluten, and possibly soy protein for a minimum of 12 weeks, assess nutrient intake and nutrient density for every study participant, and manage not only protein elimination but also overall diet quality to maximize the success of the study. 
If you are considering a dietary intervention for your child you should not be dissuaded from that path by these recent publications.  Each of these studies were useful stepping stones along the way: Malloy's study does collect a body of work in a useful fashion, though it does not support the dire (and inaccurate) "ineffective and dangerous" conclusions of certain media; Hyman's Rochester work was a lengthy and very expensive endeavor, which unfortunately included a much-too-small population to draw any real conclusions. In our clinical practice, we will therefore continue to recommend protein elimination diets when appropriate, as a component of care for some of the children we see. I encourage any parent considering dietary change for their child to find an experienced practitioner for guidance in successful implementation. 

Kelly Barnhill, MBA, CN, CCN is the Director of the Nutrition Clinic at Thoughtful House Center for Children. She is a Certified Clinical Nutritionist with over a decade of experience working with nutrition in children with autism and related disorders. 

Reality Show's Grand Finale is Set to Feature Art Auction to Benefit ARI  
Creations made during 13 TV episodes to be sold during Finale
 
The
Academy of Payne Casting this July
payne
Format 
Daytona Beach-based Academy of Payne is featured in a reality show about artists, and is casting 16 students between the ages of 18-29 to compete artistically for four jobs running the art academy's existing programs. 
 
The show will be filled with artistic challenges and opportunities for immunity from elimination. Some will require teamwork, others will be judged on individual efforts. 
 
Art created
during the challenges will be sold at silent auction during the grand finale episode with a portion of the proceeds going to ARI. 
 
 
Watch Conference Presentations Online 

Watch conference lectures for free
webcasts
At the Autism Research Institute, we are committed to free access to the latest information about evidence-based treatments for autism. We are pleased to continue offering presentations from past conferences, streaming online. This convenient service allows anyone in the world to view up-to-date information for free.
 
Tune in today to view or listen to scientific talks, presentations, and panels by top experts from around the world.
View Defeat Autism Now! Webcasts We rely on the generosity of our donors to make this possible, and we hope you'll help support this service.
Events in the Community ...
shield  
Fall 2010 ARI/Defeat Autism Now! Conference
Level 1 & 2 Clinician Seminars, Nutrition Seminar,
Parent & Science Sessions
Long Beach, CA | Oct. 7-10, 2010
 
Online Registration starts in July 
 
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asa 4141st Annual ASA National Conference & Exposition set for July
 
DATES:July 7-10
LOCATION: Hyatt Regency Dallas 
 
Topics include:
Behavior and Communication
Early Intervention
Families & Siblings
Instructional Techniques
Government Relations & Legal Issues
Sensory & Social Issues
Transition to Adulthood
 
 
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Southern California 'Back to School' Autism/Asperger's Conference set for August
 

acaDATES: August 13-14
LOCATION: Pasadena Convention Ctr.
 
Featured Keynotes include:
  • Jerry Newport & Mary Meinel-Newport
    Jerry and Mary Newport are married adults with autism whose lives inspired the Hollywood movie "Mozart and the Whale" (2006). They are authors of three books about life with autism, including "Your Life is Not a Label: A Guide to Living Fully with Autism and Asperger's Syndrome," "Autism - Asperger's and Sexuality: Puberty and Beyond," and "Mozart and the Whale: They Don't Fit in - Except Together, An Asperger's True Love Story."
  • Susan Golubock, M.Ed., OTR/L
    Susan Golubock, M.Ed., OTR/L, is an occupational therapist who specializes in the use of sensory integration techniques to help children and adults with autism/Asperger's who have sensory challenges. As an adult with Asperger's and multiple sensory sensitivities, she has a unique insight into helping others with similar challenges.
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