August 2007
ARI logo
In This Issue
Volunteers Sell Puzzle Pieces for ARI Research
Walkers Needed: Autism Walk LA is set for November
Leading Clinicians, Researchers Slated for Fall DAN! Conference
Pilot ARI Rural Outreach Program Kicks Off in the Great Northwest
DAN!Resources  
Upcoming Events
MiniDAN!
University of Arkansas, Little Rock, Sept. 22nd
 
DAN! 2007 Fall Conference Anaheim, California, Oct. 11th-15th
 
Safety Toolkit Offered to Help Families
The National Autism Association (NAA) and Unlocking Autism (UA) have teamed up to provide an
Autism Safety Toolkit  for families living with autism.
 
The toolkit includes suggested precautions
and preventative strategies and links to additional resources and is available for free online through the National Autism Association's Web site.
Volunteers Strive to Raise $1 Million for ARI Research
 
Funds for research concerning the causes of autism and effective treatments are desperately needed. Will you help us acheive Dr. Rimland's ultimate 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:

Puzzle Piece
Bernie's Bricks
Calling all Architects
 
This fall, Dr. Elizabeth Mumper is opening The RIMLAND Center - a state-of the-art autism treatment facility and pediatric practice offering specialized care and clinician training in Lynchburg, Virginia.
Her vision includes a memorial wall in remembrance of Dr. Bernard Rimland, founder of ARI and DAN!, and a Walkway of Hope honoring the countless children and families facing autism every day.
 
Architects: Call for Entries
We're calling for entries for the design of the 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.

The winning architect receives:
-Special recognition within The RIMLAND Center
-Exposure in a press release to major industry publications and media outlets nationwide
-Recognition at our grand opening celebration in November 
 
Rimland Pond

Next month: How to dedicate a brick to your loved one to benefit the center. 

 
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.
 
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
Visit our Web site:
 
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
 
Editor:                                       
Kendra Pettengill
 
Technical Support:
Denise Fulton
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
Join Our Mailing List
Summary of Dr. Steve Edelson's Midwest Road Trip 
Steve Edelson
 
As many of you know, I spent the last month traveling the Midwest and Northwest to evaluate children who have recovered or nearly recovered from autism. I also had a chance to meet with families, visit professionals, and tour several autism clinics. This was a very rewarding experience. 
For most of the trip, bad weather was either behind or ahead of me. I think I was very lucky!  You can read about my journey at www.ARITravelLog.com. The travel log will remain on our website until the end of the month.
 
During my assessments of near-recovered and recovered children, I took in-depth family histories and obtained information on treatments the parents found effective or ineffective. I also collected documentation indicating that the children had been formally tested and had received an official diagnosis of autism. In most cases, parents provided me with home videos of their children's early behaviors. In addition, I evaluated their children and assessed behaviors typically associated with autism, such as pretend play/imagination, joint attention, and conversational speech.
 
When describing their children's early development, parents often reported head-banging, lining up objects, insistence on sameness, self-isolation, little or no expressive language until age 2 to 3 years, severe gastrointestinal problems (diarrhea, constipation), chronic ear infections, and more. Today, most of these children are functioning in regular classrooms without an aid or a tutor. 
 
While I am very excited about these children, the goal of ARI is to help all individuals with autism-not solely to promote recovery, which happens in only a minority of cases (although the number is growing). On my trip, I talked with many parents about the needs of autistic individuals who will always have significant symptoms and require long-term support and care. Our DAN! Project is dedicated to developing treatments that can help to reduce these children's self-injury, aggression, and other challenging symptoms, and allow them to live happier and healthier lives. By doing so, we are opening the door to a brighter future and better residential, vocational, and recreational opportunities as these children grow into adulthood.
 
This trip was truly a group effort, and I would like to thank the numerous families and professionals who helped and supported me. I appreciate their warm welcome, generosity, and-above all-their dedication to improving the lives of individuals with autism.
 
Regards,
Steve Edelson, Ph.D.
Director, Autism Research Institute
Autism Walk LA 2007 set for November
Walkers Plan to Get Moving To Fund Autism Research
 
zoowalk logoPlease volunteer to walk or sponsor a walker on Saturday, Nov. 10th to help fund effective autism research.  
 
We need your help to make our inaugural AUTISMwalkLA a success for our families. This event provides an opportunity to show the Autism Community that with a combination of biomedical, behavioral, therapeutic, and educational intervention almost all children and adults with autism can improve their potential, sometimes dramatically. We hope you'll join us in doing whatever it takes to help our families.
 
How to Help:
Form a team, volunteer to walk, volunteer to promote, or just donate to make this event a success. Team captains and their walkers will fund critical research needed to find effective treatments to help children and adults with Autism Spectrum Disorders. One hundred percent of the proceeds donated to ARI from this event will be dedicated to autism research. All donations to ARI are tax deductible.
 
 
This year's walk is dedicated to ARI;s founder, Dr. Bernard Rimland and Sponsored by:
-Autism Society of America - National
-Autism Society of America - Los Angeles
-Center for Autism and Related Disorders
-Kirkman Labs
-Talk About Curing Autism
 
Leading Researchers, Clinicians Slated for Fall DAN! Conference
Anaheim event connects parents with effective treatment strategies and research that makes a difference 
 
Registration is under way for the Fall Defeat Autism Now! Conference set for Oct. 11-14 in Anaheim California. The event offers information to parents and practitioners about how nutrition, intestinal disorders, detoxification and other metabolic issues impact behavior, attention, speech and the general health of children on the autism spectrum. 
 
Updates about safe and effective treatment strategies will be presented by leading researchers and clinicians from the field.
 
More: Fall 2007 DAN! Conference Information
 
MumperA Note on this fall's DAN! Conference  
From Medical Director
Dr. Elizabeth Mumper:
"Science illuminating the metabolic, intestinal, immunologic, and detoxification abnormalities in children with autism is moving at breakneck speed. The Defeat Autism Now! network of parents, clinicians and researchers is at the forefront of connecting research that makes a difference to treatments that can lead to improvements in the quality of life for autistic children and their families."

Whether your child is mildly affected, has more pronounced symptoms, is a two-year-old with a recent diagnosis, or an older child with autism, attending a DAN! conference will provide you with insights into the underlying metabolic problems that are often responsible for the symptoms associated with autism. Additionally, you will become equipped with powerful tools and information that you and your DAN! physician can use to correct these disorders and bring about improvements in your child.

One feature that distinguishes DAN! from many other autism conferences is our strong commitment to bring only the most credible and forward thinking researchers and clinicians to speak at the conferences and to attend the prestigious DAN! Think Tanks. Respecting parents input and direction, this impressive group theorizes, discusses and collaborates on research projects. Only when a consensus is reached, and a biomedical intervention is deemed both safe and effective, is this information presented at a DAN! conference.

Is the biomedical (DAN!) approach the only way to tackle autism? Definitely not! Many other wonderful therapies including Applied Behavioral Analysis (ABA), Occupational Therapy, Speech Therapy etc. have proved helpful in maximizing a child's chances of improving, and in some cases recovering. However, without adequately addressing the physiological disorders and or medical conditions that are at the foundation of this condition, one can not expect to experience the full benefit of these other therapies.

DAN! is now known throughout the world as the premier conference where parents and clinicians join together to learn the causes, focus on effective treatments and celebrate the recovery of some children.

We do not claim to have all the answers. But now thanks to the insights and tenacity of the parents, the determination and open mindedness of our researchers and clinicians, we can say unequivocally at each and every DAN! Conference: Autism is Treatable - Recovery is Possible!

We hope to see you in Garden Grove, California (near Disneyland) for the fall west coast DAN! Conference.
 
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 registration assistance or questions regarding topics, speakers, which sessions are right for you, etc., please e-mail questions@DANconference.com.
 
For assistance with your travel needs, please e-mail
Pat@newhopetravel.com
Rural Outreach Program Kicks Off In the Great Northwest  
Parent Activist Tami Giles Designs Ambitious Pilot Program for ARI

Tami giles
While ARI is reaching out to provide information to other countries, the Institute is acutely aware that the message that autism is treatable has yet to reach American families in rural areas.
 
A Washington state pilot program launched last spring is yielding hard-won information on how to structure rural outreach. Charged with the task, Tami Giles is formulating, testing, and running the rural outreach pilot program.  In fact for now she IS the ARI Rural Outreach Program. (Giles, mother of a son with autism, is the founder of ARROW (Autism Recovery Resources of Washington). ARI couldn't have found anyone better suited or more committed to carrying the message of hope through biomedical autism treatment to isolated families.
 
The evidence that biomedical treatment can help autism is met with suspicion by many rural families, as well as resistance from schools and local medical clinics and professionals, so Tami has had to be resourceful in creating the pilot program. She finds that the best way is often the most laborious; hanging flyers on bulletin boards and reader boards, buying an ad on the local radio station, and one-to-one phone calls.
 
Tami writes detailed reports of every trip and outreach mission, and they make compelling and heart-wrenching reading. Most of these families have no support whatsoever. Most often, they depend on their local library system for Internet access.  A donation of conference DVDs from the NAA to one local library system means some families now can watch videos that were previously inaccessible to them.  Many of these families have never before heard there is potential for their child to get better.
 
In two counties, Tami found that all of the rural families she met received diagnoses from the same individual provider, and all were given identical prognoses: "Take your child home and mark time until you have to give it up to institutional care."  This attitude is why observant and thoughtful formation of the pilot is so important. If a rural outreach model and subsequent network aren't established quickly, many children will fall irretrievably and unnecessarily among the cracks in the current system.
 
When Tami makes a presentation to a group, parents are frequently moved to tears that there are things they can do that might make their child's life better. She has watched them weep when they find out that unusual behaviors might mean that their child is in physical pain, and has been for a long, long time.
 
She travels armed with flyers, a presentation, books from ARI and Thoughtful House, free supplements and materials donated by Kirkman Laboratories, educational and technical DVDs, and dozens of studies, reports, and resource guides. She goes into homes and sits down to talk with families to help them get started on the road to discovery and recovery.
 
One family she met now visits their public library every night to get information online and print it out, so they can study it later and share it with others.  Tami provides her personal contact information so families know they have a lifeline.  She tells them about Internet groups they can join that can answer their questions. 
 
"Give a man a fish, you feed him for today. Teach a man to fish and you feed him for a lifetime"; by helping and teaching even one family in each rural community, Tami believes we can create a network of "fishermen" who go on to help others. The pilot program is already indicating the best and worst strategies for reaching these spearhead families.

Help the Rural Outreach Effort
ARI needs people who understand the underlying politics and agendas of the school systems, medical services, and other providers of autism treatments in their areas, as well as people willing to 'beat the bushes' to extend information to families. Conclusions reached so far through the pilot program:

  • This service network is desperately needed; families don't know that autism is treatable, so we must find them.
  • Reaching them is hard work made no easier by the professionals who know these families and where they are, but are unwilling to help us find them.

Please contact Tami with support, ideas, or leads on families in rural Washington or Idaho by e-mailing her at: tami@autism.com
 
A small amount of funding can tell us whether newspaper ads in local papers might reach families with autism who are in the dark; we need to find this out, and much more.  If you would like to donate to the project to ensure it can continue, donations can be made to ARI indicating the Rural Outreach Program.

If you have ideas for outreach in your own community or state please contact ARI at: info@autism.com
This email was sent to webteam@autism.com, by autismresearchinstitute@gmail.com
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