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May 2008
ARI e-news logo
In This Issue
AAP Reps at Defeat Autism Now!
Advances in Autism Research
Green Our Vaccines Rally
Send a Photo to the Rally
Letters: Never too Late for an Older Child
Clinican Seminars at Autism One/ASA
SMSC Wins Oprah's Big Give
Defeat Autism Now
Fall 2008 Defeat Autism Now! Conference
Oct. 23-27
San Diego, CA
-------------------
CLINICIAN SEMINARS
Autism One
May 22, Chicago, IL
July 9, Orlando, FL
 
Oct. 27, San Diego, CA

register

AAP Reps Attend
Spring Defeat Autism Now!
 
Representatives from the American Academy of Pediatrics (AAP) attended two days of the Spring Defeat Autism Now! Conference and the one-day Clinician Seminar in Cherry Hill, NJ April 5-7
.
 
An excerpt from the AAP's April 3rd press release:
 
"The AAP has met with leaders of advocacy groups, such as Autism Speaks and the Autism Society of America, which include parents of children with autism. Most recently, the AAP met with representatives of Defeat Autism Now! (a program of the Autism Research Institute) in an effort to facilitate communication between pediatricians, parents and researchers about the diagnosis and treatment of children with autism. All advocates for these children agree that further research is needed regarding causes as well as safe and effective treatment.

"We are pleased the AAP reached out recently to Defeat Autism Now! in order to better understand the treatments and interventions that we have found beneficial to children with autism," said Stan Kurtz, executive council member of Defeat Autism Now! "We are full of hope that this is the beginning of a thoughtful partnership that will further explore factors that might cause or contribute to autism, as well as examine safe and effective treatment approaches for families coping with this condition.

Autism is a challenge for pediatricians, their patients and families. By working together, we stand the best chance of helping these children to realize their full potential," Dr. Jenkins said. "The Academy is committed to working with researchers and treatment groups like Defeat Autism Now! to get closer to finding answers to the multiple causes of autism and determining effective therapies."

 

ARI Site Offers New Index of Advances in Autism Research
During the past several years, many new studies regarding autism have been published in peer-reviewed medical journals. This new set of Web pages - prepared by Teresa Binstock for ARI - offers a guide.

Each section is linked to topic-oriented Web pages, pointing diligent readers to treatments that may be relevant or topics that merit further research.
 
Many topics are covered, including:
 
 
 
Our Partners
Autism Society of America 
 
Generation Rescue
 
Medigenesis: A New Beginning in Medicine
 
NAA
 
safeminds
 
Schaefer Autism Report
 
TACA
 
Treating Autism
 
Unlocking Autism
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 submit it.
 
Contributing Editor:
Jane Johnson
 
Technical Support:
Denise Fulton
 
Additional Assistance:
ARI offers 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
Director's Note:
Steve Edelson 2008
We are still beaming from the Cherry Hill Defeat Autism Now! Conference earlier this month. It was the biggest one yet, with almost 1,500 parents and professionals in attendance. Prior to the conference, ARI sponsored a two-day Think Tank that included many of the top researchers and clinicians in the field. 
 
We also premiered a trial version of 'the demo room,' in which parents were given practical suggestions and 'hands-on' experience with several procedures including pill swallowing, oral syringes, and injections. This event was a big hit, and we plan to sponsor a similar demo room at our Fall Conference in San Diego.
 
We videotaped the entire Defeat Autism Now! as well as the 'demo room' event. We will upload the videos to our Web site in the coming weeks.
 
We received quite a few 'thank you' letters for our last
e-newsletter in which we described mitochondrial dysfunction in
autism in detail. ARI has been following the research literature
on mitochondrial defects in autism for almost 10 years. You can
read several summary articles on mitochondrial dysfunction in
autism in past issues of our quarterly newsletter, the Autism Research Review International.
 
Next month ARI presents a Defeat Autism Now! Clinician Seminar at the Autism One conference in Chicago (May 22), and one at the Autism Society of America (ASA) conference in Orlando, Florida (July 9). Please write to us if you would like to distribute our tri-fold brochure describing the clinician seminar to physicians in your community. We'll be happy to send you a supply.
 
I will be presenting updates on ARI and Defeat Autism Now! at the ASA-Greater Phoenix Chapter Conference May 4th in Phoenix, and at the Autism One Conference May 25th in Chicago. If you plan to attend one or both of these conferences, please stop by our exhibit booth.
 
There is quite a bit going on these days at ARI. We'll keep our
e-newsletter subscribers informed of our projects and events as
they develop.
 
Regards,
Steve Edelson, Ph.D.
Director, Autism Research Institute

Thousands Expected to Attend June Rally in DC - Register Online

Continuing the media momentum that began with Jenny McCarthy in 2007, and amplified by the Poling decision in 2008, Jim Carrey joins Jenny in inviting the community to attend their "Green Our Vaccines" rally on June 4, 2008 in Washington, D.C.
 
green our vaccinesThe event is co-sponsored by Talk About Curing Autism (TACA), Generation Rescue, HEAL Foundation - Healing Every Autistic Life and Moms Against Mercury. The aim of the rally is to focus attention on eliminating the harmful substances in vaccines and making the vaccine schedule safe.
 
The rally begins at 9 a.m., followed by a march at 10 and a press conference at 11, at which Jenny McCarthy, Jim Carrey, and members of Congress will address the media. In addition, there will be opportunities to meet with your legislators in the Capitol. This rally will make history, and everyone within reach of Washington, D.C. is encouraged to attend.

Register to Attend
Learn more

Can't Make it to the Rally? Buy a Puzzle Piece and Send a Photo
Want to your child and family to be represented at the rally?
Ellen Sweeney of Brick, NJ is selling Autism Puzzle Pieces for
the Million Dollar Puzzle Piece Challenge, a fundraiser that
benefits the Autism Research Institute, in honor of Dr. Bernard
Rimland.
 
puzzle pieces"Bernie was instrumental in starting me 9 years ago on the biomedical path to help my son Nicholas, now 11, diagnosed with autism. I was lucky enough to find ARI when I was searching for answers to help my son and when I called ARI, much to my surprise, Bernie answered the phone and told me all was not lost.
 
He guided me through the tons of information and helped me to find research on biomedical and behavioral interventions like ABA, VB, etc. I am asking for any parent who cannot come to the rally who would like to be represented to drop a picture of their child or loved one affected by autism into an envelope with a donation to ARI (minimum of a $1 please but feel free to give more!).
 
I will affix the picture with the name of your family, your
child's name, whatever you prefer to the puzzle piece and place
it on a sign that my son with ASD, myself, and my daughter can carry (or a banner if I get a lot and there is a need!) so your family can march with us in DC."
 
Thanks so much for helping support ARI and the Green Our Vaccines Rally!"
 
Deadline: May 23rd
To participate:
e-mail Ellen for instructions
 
Want to Start Your Own Puzzle Piece Campaign?
Contact Campaign Organizer Lynda Huggins - she will send you
packets of 50 and give you the return information as well as a
poster to display with the puzzle pieces, and a letter to present
to business owners. Lynda's goal: "Let's put these puzzle pieces
across the entire U.S. and support the research we all want and
need." 
 
Parent Letters: It's Never Too Late for an Older Child
By Melinda Alleyne

Our son's story is typical of so many.
 
Joshua developed normally until his vaccinations at 18 months
old, when he rapidly spiraled out of control. Within three days,
our son was lost to us. Our once sweet and loving boy was
replaced by a child who no longer wanted us to touch him - who
now screeched, banged his head, giggled for hours, and wouldn't sleep longer than two hours, ever. Sadly, Joshua no longer liked his favorite toys, preferring now to sit and rock, or run wildly around in circles. His sweet disposition was replaced with violent seizures.
 
For months we muddled through life looking for answers on our
own. We tried everything we knew to try and recover our son,
praying that as he got well, he would get better--but little help
was available back in 1994. At best I got sympathetic looks from doctors that mostly said it all: "Give it up lady, no help is out there for your child. You just have to learn how to accept it. He was BORN autistic - you just never saw the signs - it's just
coincidence - etc."
 
I never gave up hope.
 
Thankfully ARI existed and I got the privilege of talking with
and being encouraged by Dr. Rimland in those early days before he started Defeat Autism Now! At Dr. Rimland's suggestions, we tried a gluten-free, casein-free diet. We tried melatonin, vitamin B6 and magnesium, DMG, TMG and music therapy--the list could go on and on. We tried ABA, PECS, T.E.A.C.H. and good ole "discipline" to no avail.
 
We took Joshua to countless "specialists" across the nation, and
yet his seizures were relentless and his behavior was hideous. We spent thousands of dollars. He was evaluated at Keesler Air Force Base (home of the second-largest medical facility in the Air Force), at Emory Center for Autism, at the Judevine Center for Autism, at Philadelphia Children's Center for studies in
Landau-Kleffner Syndrome, etc., etc. We even tried taking our son to see Defeat Autism Now! physicians in their early formative years. Anyone remember IV Secretin for $700.00 a whack? Yes we did that too--twice a month for an entire year.
Joshua painstakingly improved through the years, but we were
constantly reminded that most of his improvements were minor, and our financial debt was great. He was grossly behind in all skills and was increasingly self-abusive, intolerably aggressive, and he remained without any functional language. He was still severely affected by autism.
 
At 14, we took Joshua to yet another doctor, just hoping he could help him to stop cutting himself. He was so severely lost in self-abuse that it wasn't uncommon for him to have gaping
pus-filled sores all over his skin. We decided to revisit the
Defeat Autism Now! concept of biomedical healing. We had tried this in its early years, eventually becoming discouraged with it as well because it didn't seem to be helping. But we were now desperate.
 
And this time, we got the miracle we had been praying for.
Day by day Joshua is returning to us. He now has functional
language (around 300 or more words). Just this past year he has learned to make his bed, clean his room, do household chores, ride his bike, skip, jump rope, do puzzles, and play games. Two weeks ago he played with the neighborhood children for the first time ever, while I watched and cried. He is learning to enjoy pastime activities that just a year ago would have gotten us hit had we even suggested he try them. Daily, he is becoming more a part of our family. He is learning to write, and his academic skills have soared these past few months. Joshua is making his own choices about things he wants to do and how he wants his room to look, for the first time ever.
 
Just as stunning are the things that Joshua is no longer doing.
He no longer makes spit pictures over all our windows in the
house. The walls of his room are no longer painted with his poop during the night. He no longer just lies around wanting to do nothing all day except rip up every book in the house. He no
longer fixates on certain movies, or on us all having to wear
shoes. All of his sleep and eating issues are now resolved. He no longer is self-abusive or aggressive. He is off all psychiatric
medicines and is being weaned from his seizure meds. He no longer self-stims constantly, and the hysterical giggling is gone. He is no longer severely affected by autism.
 
Every day is simply a new miracle. Our son is now mildly to
moderately affected by autism. And more healing comes with each and every day. I am just glad we never quit believing healing could and would someday happen. In my humble opinion, it is never too late.
 
Melinda runs on on-line support group for military families. She
can be contacted at livninfaith@yahoo.com.
Events in the Community
 
Autism One Announces Recovery Rising
Wednesday, May 21-Sunday, May 25 at 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, the mission of which includes identifying and implementing the most innovative ideas to help our children get better, faster.
-----------------------------------------------------------------
 
ASA Announces its 2008 National Conference
July 9-12, 2008, at the Gaylord Palms Resort and Convention
Center in Orlando, Florida. This year's conference includes a Defeat Autism Now! Clinician Seminar, Wednesday, July 9.  
 
Highlights:
-Keynote speakers: Bob Hendren, DO; Temple Grandin, PhD; and Jim
Ball, EdD, BCBA
-Respite childcare provided onsite for families
-Epcot World Fare Event Wednesday, July 9 - Specially-priced Walt
Disney World(R) tickets and great experiences, including the ASA Buffet Dinner Event at Epcot(R).
 
ASA offers continuing education credits for:
-Behaviorists (BCBA credits) Hearing & Speech Professionals (ASHA
credits)
-Educators (Certificates of Attendance)
 
Early Bird Registration 
Sign up by May 1 to take advantage of early bird conference prices. For more information, call 301.657.0881, ext. 110.
 
ARI proudly co-sponsors Age of Autism:
"We'll follow the truth wherever it leads, and we hope you'll come along with us and, if you can manage it, donate to The Age of Autism and help us pursue this story. Fasten your seat belts - it's going to be a bumpy ride."
- Dan Olmsted, Editor, Age of Autism
 
Submissions
Age of Autism welcomes relevant submissions that are appropriate for its readers.
UPDATE
Mark Rimland's School won Oprah's 'Big Give' - thanks to everyone for voting
 
Oprah
Mothers' Day is right around the corner...
15% of the proceeds from the Angela Moore Autism Awareness collection go towards treatment scholarships at
The Rimland Center in Lynchburg, VA.
Help support this important cause with a treat for yourself, a friend, or your mom on Mothers' Day!

bracelet

Available online: www.angelamoore.com - please enter Consultant #300400 at check out.
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