September 27, 2007
ARI logo
In This Issue
Meet Fellow Parents and Clinicians - Join Us at the Defeat Autism Now! Conference
From the Editor: Going it Alone - Using a Biomedical Approach On a Shoestring
'VIA' Strives to Make Safe and Effective Therapies and Treatments Accessible
Leading Autism Organizations Join Forces to Spread the Word: Autism is Treatable

ARI Celebrates 20 Years 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.
Send Andrew
Wakefield Your Support

Andy Wakefield
Dr. Andrew Wakefield and Professors John Walker-Smith and Simon Murch are currently appearing before the General Medical Council (GMC) in London, accused of professional misconduct relating to investigations for their study on twelve children with bowel disorders. Rather than being scapegoated, Dr. Wakefield should be lauded for his landmark research.
 
T
he Autism Research Institute invites concerned and grateful parents worldwide to send online messages of encouragement and support to Dr. Wakefield and his colleagues during these unfair proceedings.
Help ARI Fund Research for Effective Autism Treatments
ARI depends on generous support from the community to fund research for treatments that make a difference for individuals living with autism today. Members of the autism community have initiated several fundraising campaigns in 2007 to support ARI's goal to Defeat Autism Now! Help fund research that makes a difference today:
 
Send your cash support through ARI's online store All major credit cards accepted.
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Buy Autism Awareness Calendars
 
http://www.ezzznights.com/order.html
 
2008 calendars
- 100% of  proceeds fund ARI's research. Sponsored by Ezzz Night Pajamas.
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Walk for Autism Research
 
Please volunteer to walk or sponsor a walker to help fund ARI's research.
 
zoowalk - phoenix 
Sat. Sep. 29, 2007
 
Questions?
Call: 480-831-2047
 
zoowalk logo
Sat., Nov. 10, 2007
 
Questions?
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Sell Puzzle Pieces
Volunteers nationwide are 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:

Puzzle Piece
Bernie's Bricks
Calling all Architects
 
We're calling for entries for the design of a memorial. Contest Details and photos of the current wall and walkways are online. Schedule a visit to The RIMLAND Center by contacting Catherine Mosley at 434-660-0646.
 
Next month: How to dedicate a brick to your loved one to benefit the center.
 
Calling All Active Parent Leaders
Are you an active parent leader helping other families implement the biomedical approach? Join ARI's monthly conference call to learn what's available, how to access the new resources, ask questions, offer suggestions and feedback, and connect with other parents. To learn more,  e-mail: info@autism.com
Our Partners
Autism Society of America 
 
Generation Rescue
 
Medigenesis: A New Beginning in Medicine
 
NAA
 
safeminds
 
Schaefer Autism Report
 
TACA
 
Treating Autism
 
Unlocking Autism
Join Our Mailing List
About the ARI International
E-Newsletter:
This newsletter is compiled, written, and edited by ARI parents and it is meant to be interactive: 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 submit it to us at: e-newsletter@autism.com
 
Contributing
Editor:
                                       
Kendra Pettengill
 
Production Editors:
Denise Fulton
Jane Johnson
 
Technical Support:
Chris Olds
 
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
 
See our Web site:
Fall Kicks Off with Phoenix Zoo Walk, Defeat Autism Now! Conference
 
 
Steve EdelsonFirst, I would like to thank the ARI staff and volunteers throughout the country for doing an excellent job this summer. Life is often busier during this time of the year, and the ARI crew maintained their high level of work.
 
As usual, there is much going on. As many of you know, actress and author Jenny McCarthy appeared on several national television programs as well as the cover of People Magazine in September. Thanks Jenny, for informing people about the importance of diet, effectiveness of early intervention, and the growing community of parents and clinicians using a combined biomedical and therapeutic approach to treat individuals living with autism. We look forward to seeing you at this fall's Defeat Autism Now! Conference.
 
ARI is co-sponsoring a ZooWalk with Arizona State University at the Phoenix Zoo this coming Saturday, September 29. My staff and I will be there to thank all of the participants for their support. If you live in or near the city of Phoenix, I hope you will join us! For those living in southern California, ARI is sponsoring a major walk in Los Angeles on November 10.
 
The large-scale Defeat Autism Now! Conference is scheduled in only a few days in Garden Grove, California (near Anaheim), with three full days of highly relevant information on the biomedical approach to autism. Gregory Page, a brilliant  songwriter/musician, will be performing at the Saturday evening dinner. One of Mark Rimland's paintings was featured on the cover of Gregory's last music CD. Gregory also wrote a song about Mark, and he plans to play it at the dinner. Mark will be attending the dinner event. 
 
Other news: Two children with autism have developed several Defeat Autism Now! software games for the computer. The games are designed to teach other children with autism about the biomedical approach. They plan to premier and demonstrate their games at the upcoming Defeat Autism Now! Conference.
 
Regards,
Steve Edelson, Ph.D.
Director, Autism Research Institute
Meet Fellow Parents and Clinicians Using the Biomedical Approach
Join us at the Defeat Autism Now! Conference
 
DAN! ParentsThis fall's Defeat Autism Now! Conference set for Oct. 11-15 in Garden Grove, California (near Disneyland) will provide critical updates and guidance for parents and clinicians working to treat the biomedical issues associated with autism.  
 
This conference provides the tools and motivation you'll need to help your child - including evidence-based treatment strategies, the latest research findings, and the opportunity to connect with clinicians and fellow parents from the autism community.
 

A special session for researchers and clinicians will cover the following topics:

* A Historical Perspective on the Molecular Basis of Autism * Basics of Transmethylation and Oxidant Stress * Genetic Vulnerability to Environmental Toxins * The Gene/Environment Interface * Dysregulation of Activation-induced Cytidine Deaminase and Abnormal Mucosal Immune Function in Autism* Emerging and Established Biomarkers in Autism: Applications to Research and Practice *Clinical Studies of Hyperbaric Oxygen Therapy for Autistic Individuals * Genetic Susceptibility in Autism: Do Altered Porphyrin Excretion Patterns Indicate Increased Sensitivity to Mercury in Autistic Children?

 
For information, online registration, and to purchase discounted hotel reservations and flights, see: www.danconference.com
 
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Jenny McCarthySpecial Appearance at the Parent Session of the Defeat Autism Now! Conference:  Author, Actress & TACA Mom Jenny McCarthy

The Parent Session on Saturday, Oct. 13th features a special appearance by actress, author, and Talk About Curing Autism (TACA) Spokesperson Jenny McCarthy.
 
Jenny McCarthy is the New York Times best-selling author of Belly Laughs and Baby Laughs. Her son Evan, diagnosed with Autism Spectrum Disorder in 2005, is the focus of her latest book: Louder than Words - A Mother's Journey in Healing Autism. She has recently appeared on television on Oprah, 20/20, The View, Good Morning America, and Larry King Live.
 
Need More Help?
For assistance with registering for the conference, hotel accommodations, or air fares, please call our toll-free number 1-866-208-0207. Office hours: 9am-5pm Eastern Time.
 
For questions about topics, speakers, which sessions are right for you, etc., please e-mail questions@DANconference.com.
 
For help with travel arrangements, please e-mail
Pat@newhopetravel.com
Thoughts From A 'Recovered Parent': Going it Alone... but Never Lonely
By Kendra Pettengill

K&K
Last Tuesday, Jenny McCarthy took the couch on The Oprah Winfrey Show, declaring the truth that autism is treatable, and that there is recovery for some families. And I felt vindication and joy - at last. My favorite moment was at the end when Oprah leaned in and whispered to Jenny and Holly Robinson Peete, "You are Warrior Moms."
 
I thought to myself, "Yes, we really are." 

But it occurs to me that Jenny's ardent declaration might bring little comfort to the parents who write to us here at ARI asking, "What about us, the have-nots?" Just like the rest of us, Jenny was given no guidebook to autism. She experienced the same bewilderment and felt marginalized by detached pediatricians and other experts, just as we did. And despite fame, beauty, and financial means, Jenny had to learn how to help her son in the same trenches as the rest of us, with messy hair and no makeup, in front of her computer in the middle of the night. When she called it "the University of Google," I realized we were kindred spirits.
 
Once Jenny got the information, she had access to resources that many of us could never afford. I am more typical: as a single mom, I work 40+ hours a week, and I make around $30,000.00 a year.
 
But here's the good news: I recovered my daughter.

Recovery on a Shoestring
I did it alone. I did it without a doctor. I did it without any professional help and without assistance from any government agency. I did it alone, but I was never lonely. I did it with the "University of Google," and Oprah's "Warrior Mom" mentality. I did it with dogged determination, sacrifice, intense research, and the personality and mental state of a grizzly bear protecting her cub. In effect I became a medical expert, a nutritionist, a biochemist, an ABA therapist, a special-education attorney, a mediator, an advocate, and a courageous communicator. Without fear or hesitation, I called authors and experts I came across in books and on the internet, and found that many answer their phones just like you and I do.
 
Our founder, Dr. Rimland, was one of the easiest people to talk to on the phone, and one of my biggest cheerleaders and supporters for going it alone. One of his greatest fears was that parents would get the message that they couldn't do most of the treatments on their own, while it was his firm belief that they could, and should when possible.
 
I was never lonely, because of fellow parents. My angels and saviors were the many amazing people I met online. Some formed shoestring non-profits just to help other parents. Some hosted internet groups aimed at facilitating the autism conversation - help, advice, and support for parents. From clarifying intricate technical questions to providing shoulders to cry on, we carried each other through our journey to recovery, for no pay, fighting together for our children's health and dignity.
 
My daughter's diagnosis was "severe autism." I was told she would never speak and that she was mentally retarded. She spent her time rocking, flapping her hands, pulling her hair out, biting her arms and hands until she bled, and banging her head on the floor, the furniture--or even a concrete sidewalk--while having one of her hundreds of meltdowns. I was told that as she got older she would turn her rages against me. The advice I was given was, "Take her home and love her until you have to put her in an institution." I was advised to contact a lawyer to set up a "life plan" to care for her for life. This is when parents are typically provided the "no known cause, no cure" information by "acknowledged experts," or are told to "Just have another child," as if the ones we already have are disposable.

Instead of giving up on my precious child, I decided to fight back, and the truths I uncovered are astounding. I have read more books, studied more scientific research, examined more policies, cried tears of sadness and joy, and reveled in the amazing return and recovery of my beautiful daughter, the greatest love of my life. I endured clueless criticism from those who claimed to understand my motives as well as my emotions.
 
Why Me?
So what led to recovery? It's clear that while I did everything I could think of, I did not recover my daughter because I was more determined than other mothers I know. I did not recover my daughter because I spent more money than others. I did not recover my daughter because I made more sacrifices, or because I'm smarter, or a better researcher, or made better connections than other moms.
 
My daughter recovered because she happened to be a "nuclear reactor."  That is, just as my daughter was pre-programmed or susceptible to be damaged in the first place, she was for some unknown reason "susceptible" to recovery. I feel lucky, but I also feel something like guilt. The initial "Why me?" when my daughter was diagnosed with severe autism has been replaced with a new one: "Why should it be my child that recovers, when others don't?" 
 
So I've dedicated myself to this cause: I want to see every child make progress, whether that means full recovery or just being healthier and able to live free of physical pain, because treatment is not only about recovery.
 
'Haves' and 'Have-Nots' are useless labels
In most ways, I was a "Have-Not." Denied professional assistance and unable to afford treatments, travel, and conferences, my daughter seemed a hopeless candidate for the biomedical approach. What I did "Have": A loving and supportive family. All the money in the world can't buy a spouse's support for your biomedical endeavors, or stop relatives entrenched in the allopathic medical paradigm from attacking you for your views and efforts. Those parents who are not abandoned by family and friends after the diagnosis are in many ways the best equipped for this difficult journey. Paired with that kind of support, the little money it takes to correspond with other parents on websites and chat boards will go far.

Take-away Message: You Can do This
  1. You can do most treatments for your child on your own! 
  2. No, it is not easy. 
  3. It takes a lot of self-education. 
  4. The diet and supplements take a little more money out of your budget, but you can do it.                     
  5. Understand that there are thousands of other parents out there who understand your mission is the ultimate act of love for your child, and ignore those that say otherwise.      
  6. Educate yourself on special education law, and become an advocate for your child. 
  7. Use whatever resources are available to you, without guilt. 
  8. Take care of yourself as well as your child, because you need to be present for the long haul. 
  9. Don't be bullied by anyone into doing something you don't feel comfortable with, or your "mommy instinct" tells you isn't good for your child. 
  10. Never lose faith. 
  11. Pay it Forward.  Help another family to find the truth that autism is treatable
  12. Support ARI and Defeat Autism Now! because they are foreward-thinking national organizations dedicated to supporting individuals living with autism today. 
Support ARI and Defeat Autism Now! as they are transparent, forward-thinking national organizations dedicated to supporting individuals living with autism. ARI conducts research and openly shares information that makes a difference now - not next year or in 10 years. ARI's research is not compromised or affected by conflicts of interest from pharmaceutical companies, or by any governing body. ARI listens to parents, and honors our stories as eyewitness testimony. Parents and organizations that have benefited from ARI's aid have joined forces with ARI to help forward research that makes a difference. Its integrity is why I work on ARI's newsletter, and mentor families.

So, to all Warrior Moms and Dads out there wondering if it can be done, let me offer you the encouragement you need: Autism is treatable, even for regular people like us.

'VIA' Strives to Make Safe and Effective Therapies and Treatments Accessible
 
http://www.vianow.org/index.html
"Expenses families with autistic children face are enormous, ranging from $20,000-$60,000 annually," said Jill Urwick, President and Founder of Vital Interventions Available (VIA), an organization dedicated to making safe and effective therapies more accessible to families of children with disabilities. 
 
The new non-profit, which launched its website this month, will provide financial assistance to qualifying families throughout the United States. VIA is working with select physicians across the country to provide these services.
 
Read More on VIA's Web site
Autism is Treatable
Leading Autism Organizations Join Forces
 
Children are recovering from autism. To help more children, the Autism Research Institute is joining forces with leading autism organizations, including:
  • Autism One
  • Autism Society of America
  • Generation Rescue
  • National Autism Association
  • SafeMinds
  • Schafer Autism Report
  • Talk About Curing Autism
  • Treating Autism
  • Unlocking Autism

We will work together as the Autism Collaboration.

The Autism Collaboration is the most experienced autism advocacy organization in the world. We are expanding outreach efforts to help educate the public and replace misconceptions about autism with a valid message of hope. A diagnosis of autism does not have to have a life-long prognosis. Many children improve dramatically -- some even recover, given the proper treatments and therapies.
 
To match the growing needs of families, the Autism Collaboration is expanding and coordinating advocacy, research efforts, services, and programs.  All of the organizations share an unparalleled commitment to the community. With over 75 years of combined public service focused on saving children, the Autism Collaboration is the best resource for the most up-to-date information regarding treatments, therapies, research, education, family matters, and other valuable information.
 
Together and independently, the member organizations plan leading regional and national conferences, fund research studies that make a difference, organize educational seminars, and provide a variety of services that help affected individuals and their families every day.
 
The Autism Collaboration will be spearheading a number of exciting initiatives over the coming months, which we look forward to sharing with you. Your voice is important. We welcome your contribution and participation. Together we will find the best answers.
 
Learn more about the Autism Collaboration at www.Autism.org and help save a child, or call toll-free 866.366.3361 to lean more.
 
This email was sent to autismresearchinstitute@gmail.com, by autismresearchinstitute@gmail.com
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