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January 31, 2008
ARI logo
In This Issue
Hours To Go to the Deadline - Help ARI Win Causes Giving Challenge
ARI Co-Sponsors The Age of Autism
Take ARI's Treatment Effectiveness Survey by Feb. 1
2008 Parents As Partners Research Initiative Funding Announced
Beyond GF/CF: Diets for People with Autism
Autism Advocate Lyn Redwood Joins Conference Team
Letters: Evolution of the Reluctant Biomedical Mom
Events in the Community
Defeat Autism Now
 
EVENTS:
Defeat Autism Now! Spring Conference
Cherry Hill, New Jersey (near Philadelphia) - April 3-6, 2008 
 
Clinician Seminar at Autism One in Chicago, IL May 22, 2008
 
ASA in Orlando, FL, July 9, 2008 
 
Defeat Autism Now! Fall Conference, San Diego, Oct.23-26, 2008
 
UPDATES:
Updated lists of practitioners
In order to better serve the community, ARI has altered the requirements for inclusion on the list of Defeat Autism Now! practitioners. The first list includes clinicians who are licensed healthcare providers. The clinician must attend a Defeat Autism Now! Clinician Seminar at least once every two years. We also require a signed statement asserting that the clinician subscribes to and conducts his/her practice in accordance with the Defeat Autism Now! philosophy. There are naturopaths and homeopaths that offer the Defeat Autism Now! approach, who are not required by state law to have a license in their field of practice; they are included on a second
list.
 
As before, ARI does not "certify" practitioners or guarantee competence, skill, knowledge, or experience. If you are seeking a practitioner to help with your child's biomedical needs, you should interview the practitioner of your choosing to ensure that they are well-versed and experienced in the various aspects of the biomedical approach.
giving challenge
Hours To Go to the Deadline
Give $10 to help ARI win Causes Giving Challenge

Facebook, a free, online social networking site, widely popular with (but not exclusive to) young people, is sponsoring the "Causes Giving Challenge" in January, and ARI has a chance to win. A sixteen-year-old girl has listed ARI/Defeat Autism Now! as a cause with Facebook, so ask your friends and families and neighbors to make a small online contribution!
Help us rise to the top of the rankings by donating $10 or more to ARI on the Facebook site (below). On February 1 at noon, the Cause with the highest number of donors will be awarded $50,000. Second and third place Causes will win $25,000, and the next ten, $10,000 each.
 
How to Help:
Visit
Facebook's "Defeat Autism Now!" page to register and donate today. The donations are managed by JustGive.org. Only nonprofit Causes (a U.S. 501(c)(3)) can enter the challenge. All proceeds go to research that makes a difference for families living with autism. http://tinyurl.com/23mctv
 
Register Recovered Children Online 
Drastic increases in autism rates suggest there have been recent changes in the environment that are injuring our children. ARI believes these injuries can be treated, and, in the best circumstances reversed using biomedical treatments developed by Defeat Autism Now! researchers and practitioners, intensive behavioral intervention, and
other effective therapies.
As the frequency of positive reports increased over time,
ARI began to track the growing phenomenon, asking parents of recovered and nearly-recovered children to register on
our website, www.AutismIsTreatable.com We also asked them
to indicate what type of documentation they could provide to show that their children were autistic. To date, more than 1,100 parents have signed up on the site.
Register a Recovered Child
 
 
ARRI International
ARI Kicks off its 21st Year of the ARRI Newsletter 
 
(See details below for a free sample issue)

Started in 1987 by ARI founder and respected autism pioneer Dr. Bernard Rimland, the Autism Research Review International (ARRI) has received worldwide praise for its thoroughness and objectivity in reporting the current developments in biomedical and educational research. The latest findings are gleaned from a computer search of 25,000 scientific and medical articles published every week.
 
Recent articles have included:                            
- Overview: Detoxification through chelation therapy
- Antibiotics in infancy linked to immune ills
- Improvements seen in autistic children undergoing HBOT 
 
A one-year subscription to the ARRI is $18 (U.S.; $20 outside the U.S.). Issues are sent via first class mail. Back issues of the ARRI (from 1987) are $10 per year. For a free sample, visit our website and submit an ARI Information Request Form.
 
Available in Paperback

snwc 
By Helen Landalf. Illustrated by Mark Rimland. This beautifully illustrated and engaging fictional story tells the story of a young girl named Amanda, who begins to search for her missing cat, who has disappeared into the night. As Amanda searches her neighborhood and beyond to find her beloved friend, she discovers a secret night world where hundreds of cats abound. This wonderful book is a collaboration between the author, Helen Landalf, and the illustrator, Mark Rimland, who is the author's brother and an adult with autism spectrum disorder (ASD). 
Calling All Active Parent Leaders
Join ARI's parent leader network
 
Are you an active parent leader helping other families implement the biomedical approach in your community?
 
We're convening a monthly conference call for ARI Network Parents. Join us to learn what's available, how to access the new resources, ask questions, offer suggestions and feedback, and connect with other Network Parents to pool ideas.
 
The Age of Autism Online
 
ARI proudly sponsors The Age of Autism, the first daily Web newspaper for the environmental-biomedical community - those who believe autism is an environmentally induced illness, that it is treatable, and that children can recover.
 
Editor Dan Olmsted, an investigative reporter and senior editor for United Press International (UPI), teams with Managing Editor Kim Stagliano and editors-at-large J.B. Handley of Generation Rescue and Mark Blaxill, to provide this insightful forum. Contributors have included Barbara Loe Fisher, Anne Dachel, David Kirby, and many more.
Correction: The non-profit organization Vital Interventions Accessible (VIA) was founded by Jill Urwick. Maureen McDonnell, RN sits on its Board of Directors. Last month's e-newsletter incorrectly stated Ms. McDonnell helped create VIA.
Our Partners
Autism Society of America 
 
Generation Rescue
 
Medigenesis: A New Beginning in Medicine
 
NAA
 
safeminds
 
Schaefer Autism Report
 
TACA
 
Treating Autism
 
Unlocking Autism
Visit our Web site:
 
About the ARI International
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 addressed, please send it to us at:
e-newsletter@autism.com
 
Contributing Editors:
Jane Johnson
Kendra Pettengill
 
Technical Support:
Denise Fulton                                     
Additional Assistance:
ARI offers a toll-free resource line with information, contacts, and access to resources available through the Autism Research Institute. Call: 866.366.3361
Join Our Mailing List
Steve Edelson 2008The Autism Research Institute accomplished a great deal in 2007, and we have more exciting projects planned for 2008.  For example, we will expand our rural outreach project, translate more of our articles into different languages, and continue to update our website with new articles and videos.
 
We recently uploaded eight issues of our Autism Research Review International (hardcopy) newsletter to our website, autism.com.  You can also view the newsletters by visiting www.AutismNewsletter.com 
 
The site now contains all issues from 1987 to 2006, with an extensive index.  It is one of the largest resources on biomedical and educational research on the Internet. 
 
We are busy planning our Defeat Autism Now! conference, scheduled for April 3-7 in Cherry Hill, New Jersey (near Philadelphia). These conferences are always exciting because they are full of great information to help parents and to inform physicians.
 
Please tell your friends about our e-newsletter so they too can keep up-to-date with our plans and projects.  
Regards,
Steve Edelson, Ph.D.
Director, Autism Research Institute
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 1.

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.
 
 
View parent ratings:
Changing Minds Changes Lives 
Join the grassroots effort to educate doctors nationwide
 
jepsonEarlier this month, our partners at the National Autism Association initiated an effort to bolster the long-overdue shift in our understanding of autism. It's still difficult for parents to find physicians who understand the complex health problems that children with autism endure.
 
ARI supports NAA's campaign, asking all parents to participate in educating physicians. "Changing the Course of Autism" was written with doctors in mind, with over 50 pages of references to published scientific studies supporting the information and treatment options discussed by Dr. Jepson.
We encourage each of you to buy a copy of this book today and deliver it to your doctor. 
The book is available for less than $13 from Amazon.com, but if you buy it for $20 from ARI, a portion of the proceeds goes to research that makes a difference.
 
Will you participate? Together, we can change the course, one doctor at a time.

2008 Parents As Partners Research Initiative Funding Announced

Tired of watching millions of dollars pour into autism research, with no apparent benefit for your child?  Join with us!
 
"Parents as Partners" was initiated because parents of children with the diagnosis raise millions of dollars annually for autism research, but typically have little say about where research efforts are focused. This failure to acknowledge the parents' viewpoint is no longer acceptable; their input is a valuable resource in guiding research into the most promising areas of investigation.

A joint partnership among the Autism Research Institute, the National Autism Association, Autism One, SafeMinds, and TACA, is pleased to announce several research projects with input from "Parents as Partners," as follows:
  1. Richard C. Deth, PhD. Northeastern University
    Category:  Therapeutic (Diagnostic) Development
    A Novel Blood Test for Impaired Methylation in Autism
  2. Dan Rossignol, MD.  International Child Development Resource Center
    Category:  Evidence-Based Development
    A Double-Blind, Placebo-Controlled Crossover Trial of Fluconazole in Children with Autism
  3. Elizabeth Mumper, MD. The RIMLAND Center
    Category:  Research Support
    Urinary Porphyrin Analysis in Autism Spectrum Disorders
  4. Individual Clinicians
    Category: Clinical Fellowships
    Funding period - Ongoing
Note: Recipients of awards agree to provide pro bono medical support for families in need in exchange for financial support for clinical fellowships.

For additional information regarding the "Parents as Partners" research program, or to donate, see: www.autism.org.

Beyond GF/CF: Diets for People with Autism
By Jim Blumenthal, DC, CCN, DACBN, a clinician using the Defeat Autism Now! Approach 

blumenthalRecognizing that the foods we eat have an impact on how we feel and function has meant breakthroughs in how doctors work with spectrum disorders; we have mostly been concerned with casein (from milk) and gluten (from wheat and other grains), but there are other foods that can cause problems. And sometimes casein or gluten is really not the problem.

Food sensitivities are varied; immediate sensitivities, delayed sensitivities, and sensitivities that mostly take place in the small intestine. The different kinds are the result of reactions by different immune markers, called immunoglobulins. Immediate sensitivities come from Immunoglobulin E (IgE) reactions. Delayed sensitivities come from Immunoglobulin G (IgG) reactions, and the tummy type comes from Immunoglobulin A (IgA) reactions.

Our immune system is designed to recognize proteins because pathogens such as viruses, bacteria, fungi, and parasites are mainly protein. Every food we eat also has a protein signature. When our immune system reads the protein signature, it recognizes that protein either as "belonging" or not. If it recognizes the protein as belonging, it leaves it alone and all is well. But if it sees the protein as "foreign" or as a previously-recognized threat, the immune system attacks, which generates the inflammatory and autoimmune responses that we are trying to eliminate, or at least reduce, for our kids.

Immediate (IgE) food sensitivities are easy to recognize, and are quite rare. The child eats something, and right away their nose starts running or their mouth itches or they break out in hives or get sleepy, or agitated. Usually there are only a few of these sensitivities, and they're easy to recognize because they happen within minutes of eating an offending food. These are what most allergists test for.

Delayed (IgG) food sensitivities are more common, but difficult to recognize because symptoms can take anywhere from 3 hours to 3 days to show up. They can range from subtle to severe, and can last for long enough (15-21 days) that most short-term avoidance diets are not going to unmask them. These are the food sensitivities that cause earache, headache, stomachache, "brain fog" and inability to focus, over-stimulation and loss of socialization in ASDs. These are also the ones that cause the worst inflammation in the digestive system, imbalance in neurotransmitters, hyperactivity in the immune system and trouble in the endocrine system. Any food from applesauce to zucchini can cause these sensitivities, but most conventional allergists don't test for them.

Actually, it's relatively easy to find out what foods might create problems and what foods might be "safe." We can measure the IgE, IgG, or IgA reactions of different foods through simple blood tests. In fact, the IgG reactions can be tested by a simple finger-prick blood test. After measuring how reactive someone is to about 100 different foods, it's possible to create a food plan that includes the foods they are not sensitive to, and avoid only those they are sensitive to. Of the hundreds and hundreds of tests we have run in our practice, the most common food sensitivities have been casein and whey, chicken eggs, gluten and gliadin, almonds, soy, and pineapple. While no one test gives us 100% of the information we need, this is a good starting place for designing an effective diet.

Resources: There are several labs across the country that do a good job of testing IgG and IgE food sensitivities, and a handful that also test IgA sensitivities. Some labs test IgG with a finger prick and some only do it with a full blood-draw. All of the IgE tests are done with a blood draw, but are the least important in terms of treating ASDs. Ask your doctor about these tests or give us a call and we can help you access them.

Dr. Jim Blumenthal runs the Brain Performance Center at the Applied Kinesiology Center of Los Angeles. He can be reached at (310) 445-3350, drblu427@aol.com.

Autism Advocate Lyn Redwood Joins the Defeat Autism Now! Conference Team
 
lyn and willDefeat Autism Now! is privileged to have Lyn Redwood step into the position of Conference Coordinator, which will be vacated by Maureen McDonnell in mid-April.
While many of you know of Lyn as one of the original "mercury moms," as a founder of SafeMinds, and as a real-life heroine in David Kirby's book Evidence of Harm, you might not know of her role on the National Institutes of Health (NIH) Interagency Autism Coordinating Committee, nor of her work as a consumer representative with the Department of Defense Autism Spectrum Disorder Research Program.
Lyn's focus is to drive the autism research agenda in a direction that is open to the investigation of environmental factors plausibly contributing to autism, and she strongly supports the development of urgently needed treatment strategies. She brings a depth of knowledge from her background as a nurse and as the mother of a child with autism to every position she holds, as well as bringing impressive administrative and people skills to her new role with Defeat Autism Now! 
"I am thrilled to have the opportunity to work with her in this new capacity," said Elizabeth Mumper, MD, Medical Director of Defeat Autism Now!
Laura Bono, Board Member, co-founder and Chairman Emeritus of the National Autism Association (NAA) had this to say about Lyn's decision to join ARI: "ARI is certainly lucky to have Lyn Redwood join the team. Lyn used biomedical treatments to recover her son, Will, and has never given up trying to help all children with autism. From walking the halls of Congress and the NIH in order to influence research policy and decisions, to raising money for research, to contributing to landmark papers, Lyn has worked tirelessly for over ten years to make a difference in the lives of those with autism. Fully believing that all people with autism deserve treatment and that recovery is possible, Lyn judges all research or policies with this guiding principle."
Typically, Lyn Redwood's comment on her new job is unassuming and clear on task: "It is a huge honor to work with the Autism Research Institute and to help promote the vision and mission of Dr. Rimland, that autism is indeed treatable and preventable.   Having watched my own son respond dramatically to targeted biomedical interventions, I want to share this message of hope with other parents who are struggling to restore their  
child's health.
 
"In order to help this and future generations of children live healthy and productive lives, we need to work hard to reach more parents and to train more clinicians in the appropriate evaluation and effective treatment of the many co-morbid medical conditions that result in the symptoms called autism."
 Lyn lives outside Atlanta with her husband, an emergency medicine physician, and their three children, Hanna, Drew, and Will, who will soon be 14. She holds a BS and MS in Nursing; for half of her thirty-year career, she's been a family nurse practitioner with a focus on pediatrics and women's health. Her dedication, energy, and insight are a gift to her family, the autism community, and now ARI. We are honored to have her accept this position, and look forward to working with this very distinguished parent-advocate.
Volunteers Strive to Raise $1 Million
Puzzle Pieces Fund ARI Research for Effective Treatments 
 
Funds for research concerning the causes of autism and effective treatments are desperately needed. Will you help us achieve Dr. Rimland's goal to defeat autism?

Volunteers nationwide are answering the call by selling puzzle pieces to benefit ARI's Research Fund--our goal is to raise $1 million.

For more information, or to request puzzle pieces to sell, e-mail the project's founder, Lynda Huggins at:
oh_mom@yahoo.com
 
Puzzle Piece Challenge Letters:
I found your email address on the Autism Research Institute website.  I am a Preschool Program for Children with Disabilities teacher in Georgetown, TX.  I am getting married in May and was interested in donating to your organization in honor of the guests at the wedding.  I know that you will send puzzle pieces for people to sell, but would you send puzzle pieces to me to give to my guests as favors?  I think it would be a meaningful way of letting them know that money has been donated to ARI.  We are planning on having between 125 - 150 guests.
Thank you for your time!
Sincerely,
Sarah Packard
-------------------------------------------------------------
I am a 13-year-old level-10 gymnast at Cincinnati Gymnastics. Our coach has a daughter who is autistic, and this year we have decided to raise money for autism. We found your fundraiser and this is the one we have decided to do. We have 100 team-member gymnasts who will be selling puzzle pieces. I am also setting up a booth at our gym's annual gymnastics meet that we host every January.
We aren't sure how many packets of 50 to order so I was hoping that you could send however many packets. We want to sell as much as possible. We are planning on selling as many pieces as possible individually and at our meet where over 1000 gymnasts will be competing. We expect there to be anywhere from 5,000 to 10,000 people there. Please email me with your ordering suggestions and how to get everything started. We would like to get the pieces as soon as possible so we can start selling them that would be great. We will do our best to make a successful fundraiser for autism.
Thank You,
Kayla Beckler
Age 13, Cincinnati
Letters: Evolution of the Reluctant Biomedical Mom
 
flintonMy 6-year-old son, Jimmy, has regressive autism - he developed normally up until age 16 months and then "regressed" into autism.  He met all of his developmental milestones on time or early - he spoke his first word at 10 months, walked at 11 months, and used his first two-word sentence at 12 months.

Jimmy actually regressed, very dramatically, over a weekend in February of 2003.  I remember because not only was my husband away on a business trip over that weekend, but I was also sharing in the long-term care of my near-death grandmother (she died in April of that same year), and my best friend was up visiting from California. In the middle of it, Jimmy came down with rotavirus - high fever, lethargy, vomiting, wouldn't eat - the whole thing.  When he broke the fever 24 hours later, he recovered physically but had lost many of his skills, such as pointing, speech, and eye contact.  Initially, we thought he was just being very slow to recover from the rotavirus, but those lost skills never returned.

During the subsequent months - between the ages of 16 months and 24 months - Jimmy continued to regress, and was at what I now consider his worst.  He started banging his head, hand and arm flapping, and seemed to be totally closed off to the world around him, including us.  He had been a very silly, playful baby who loved to joke around, and that part of his personality was totally gone.  He still remained very physically affectionate, which, for the first few months that autism was mentioned, I used to prove that he couldn't possibly have autism.  I have even looked back at a post I wrote online stating that Jimmy couldn't possibly have autism because he was so affectionate.  Some kind person tried to break it to me that even autistic children are affectionate, and that if Jimmy had all of the other symptoms, I should probably come out of denial.

I have always been the type of person who, when faced with a problem, tries to find a solution.  So, if autism was the problem, I was determined to solve it.  The first solution I was told about was ABA.  By "told" I mean that I was lectured about the absolute necessity of getting Jimmy into 40 hours per week of ABA pronto, or else I was damning his future.  Having a background in mental health and having used behavioral techniques with my adult mentally-ill clients, ABA (and any type of behaviorally-based method) really rubbed me the wrong way.  So we went with what I considered the more child-friendly "Floortime" model instead.

The next solution I heard about was biomedical treatment.  I remember my initial thoughts - these people are simply so far in denial about their child's life-long condition that they'll do anything - even 'experimental' treatments.  Also, being a "just the facts" type of person, I found a lot of the information frustrating and anecdotal.  I asked: Why would anyone want to try a diet as limiting as the GF/CF diet when your kid barely eats anything in the first place?  I openly pooh-poohed the whole biomedical movement as a waste of precious time.

But then I started meeting parents whose children had significantly improved, if not recovered, as a result of biomedical treatment, and I decided to revisit the idea.  In June of 2005 we started seeing a doctor who uses a biomedical approach.  And guess what?  We started seeing measurable improvements.

Here we are, more than a year later, and I am so glad I overcame my doubts and tried biomedical interventions with Jimmy.  In the past 18 months Jimmy has gone from a child who had no interest in anything but lining up toy cars to the old playful, joking boy we had before he regressed.  He would much rather play with us than sit lining up toy cars by himself.  He actually wants to play with us so much that it gets annoying at times! 

I still have limits to what I will do with Jimmy. I decide what I am comfortable with - I give him supplements he will take willingly in food - I mix them in with a teaspoon of applesauce and agave nectar.  While I want to help Jimmy improve and be the best person he can be, I have limits. I am giving him the most fulfilling life possible, but I see the wisdom in making careful choices that are right for our family. I once viewed biomedical as a faction of those parents dead-set on 'fixing' their unfixable kids, but now that I am in it, I see that most parents - like me - are simply making informed choices about the right educational approaches, treatments, and diets for their kids.

Jimmy still has a long road ahead, but compared to the boy off in his own world we had for all those years in between, it's a night and day difference.

Jennifer A. Flinton
Olympia, WA

Events In the Community...

Vital Interventions Accessible (VIA) Presents: Shop 'Til You Drop for Autism Recovery Day

  • http://www.vianow.org/index.htmlSaturday, February 23 in Concord, NC
  • Registration begins at 8 a.m.
  • Benefit Walk begins at 9 a.m.
Registration is $10 for adults and $5 for children 12 and under. VIA will use 100% of the proceeds to fund medical treatments and therapies for children on the autism spectrum.

Contact: jurwick@vianow.org
Learn more

------------------------------------------------------------
Treating Autism (UK) Announces: Introduction to Nutritional Interventions for Autism

Treating AutismSaturday, March 8 at the University of Surrey
    
One-day seminar for parents and carers of children with autism spectrum disorders. Parents will share their 'Stories of Hope' - speakers include Paul Shattock, OBE and clinical nutritionist Jon Tommey.

Contact: TreatingAutismUK@aol.com
Learn More

------------------------------------------------------------------------

Autism OneAutism One Presents: RECOVERY RISING

Wednesday, May 21-Sunday, May 25 at the The Westin O'Hare Hotel (Chicago area)
 
Autism One 2008 features the Defeat Autism Now! Clinician Seminar, Thursday, May 22. 

The Clinician Seminar is a project of the
Autism Collaboration whose mission includes identifying and implementing the most innovative ideas to help our children get better, faster.
 
---------------------------------------------------
ASA Announces its 2008 National Conference
 
asaJuly 9-12, 2008, at the Gaylord Palms Resort and Convention Center in Orlando, Florida

Registration is in online at:
www.autism-society.org/conference

ASA offers continuing education credits for:
Behaviorists (BCBA credits)
Hearing & Speech Professionals (ASHA credits)
Medical Professionals (CME credits)
Educators (Certificates of Attendance)

Contact: 301.657.0881 ext 110
or e-mail conference@autism-society.org
Learn More 

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