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August 2008

Logo July 2008

In This Issue
Price Breaks Offered to Parents for Fall Defeat Autism Now! Conference
ARI Releases New & Updated Media Pages
Defeat Autism Now! - Where Parents and Clinicians Pool Knowledge
Former Law Professor Debunks Munchausen Myth
Autism Studies Enrolling Now
Mark Rimland Inspires Title Track on New Album
Update Your ARI E-News
Registration
Response Requested 

We're updating the Autism Research Institute e-newsletter mailing list.
 
Please take a moment to help us place you on the correct regional e-mail list by providing your location information. 
 

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Fall 2008 Defeat Autism Now! Conference
Oct. 23-27
San Diego, CA
 
CLINICIAN SEMINAR
Monday, Oct. 27

Register

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SAVE THESE DATES:
Defeat Autism Now! Spring 2009 Conference
April 16-19, 2009
Renaissance Waverly Hotel
Atlanta, Georgia
Defeat Autism Now! Mini-conference
June 13 - 14, 2009
Oklahoma City, OK

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Taking Defeat Autism Now! Home
Last April, we initiated a trial version of a 'demo room,' where parents were given practical suggestions and hands-on experience with procedures that included pill-swallowing, oral syringes, and injections. We plan to sponsor a similar demo room at our Fall Conference in San Diego. We'd like your input as we build our curriculum for this fall's event.
Take our quick survey to let us know what topics and components of hands-on training are most critical to caregivers.

Survey

Phoenix Zoowalk Set for Oct 18th  
 
zoowalk - phoenix
 
We hope you'll consider volunteering to walk (virtual walkers are welcome) or sponsoring a walker to help fund research that makes a difference. 
 
All proceeds from the Phoenix Zoowalk go to fund Autism/ Asperger's treatment research at Arizona State University and ARI.
  
Details  
 
Questions?
Call: 480-831-2047
 
Caregivers Urged to Register Loved Ones
Tissue Bank for Developmental Disorders and ARI Provide Ongoing Registration to Advance ASD Research  
 
To register: call 1-800-847-1539 or 1-410-706-1755 (from outside the continental U.S.) to request a packet or discuss any questions or concerns relating to tissue donation.
 
How to help spread the word: Contact the NICHD Tissue Bank:
University of Maryland
Department of Pediatrics
655 West Baltimore St., 13-013 BRD
Baltimore, MD. 21201-1559
Toll free 800-847-1539
Ph. 410-706-1755
Fx. 410-706-0038

E-mail NICHD
NICHD website
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.
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 contact us.
 
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
From the Director:
 
edelsonWe have passed the halfway mark this summer. Cooler days are just around the corner.
 
July's Autism Society of America (ASA) national conference in Orlando was a hit. There were more than 2,000 people in attendance. Our one-day clinician seminar was sold out at 57 practitioners. We also sponsored three Defeat Autism Now! presentations within the conference, by Drs. Nancy O'Hara, Bryan Jepson, and Dan Rossignol.
 
In addition, the keynote speaker on the first day, Dr. Robert Hendren of the MIND Institute, gave a terrific biomedical talk. The video of his presentation will be posted on ASA's Web site in the near future.
 
The Autism Research Institute recently signed formal, written agreements to work closely with several autism organizations outside the US, including Ariane (France), Autism Canada, DAN! Europe (based in Italy), DAN! Mexico, the MINDD Foundation (Australia), and Treating Autism (UK).
 
Our next Defeat Autism Now! conference is scheduled for October 23-27, 2008 in San Diego. Note: the Defeat Autism Now! conference will not return to the West Coast of the U.S. again until 2010 or 2011.
 
This summer has been a personally meaningful one for me. My youngest daughter, Micaela, had her Bat Mitzvah last month, and this month, my oldest daughter, Janae, will be part of the only US high school band to play at the Beijing Olympics.
 
Keep cool in August.
 
Regards,
Steve Edelson, Ph.D.
Director, Autism Research Institute
Defeat Autism Now! Fall Conference Includes More Discount Options
 
As we enter our second decade presenting the premier biomedical conference for treating autism, the Defeat Autism Now! Conference team is pleased to announce lowered daily rates for
the Fall 2008 Defeat Autism Now! Conference in San Diego. Our standard parents' registration rate of $130 per day is now reduced to $99 per day for pre-registered attendees. 
 
Volunteers Are Needed - Share Your Time To Help Families For A Reduced Conference Rate
Defeat Autism Now! Conference Volunteers are crucial to the success of the conference - offering assistance to parents and conducting the tasks required to make the event run smoothly and offset our costs. This keeps the conference as affordable as possible for all. 
 
Please consider giving two to four hours of your time to help out - volunteers are able to attend sessions and events, with a discounted rate of just $85 per day. 

To become a Defeat Autism Now! Fall 2008 Conference Volunteer and get the reduced rate: Click the Volunteers Discounted Rate $85-per-day option on the Conference Registration Form. 
 
Once you have registered, our Director of Volunteers will contact you to assign you a post that is convenient for you and helpful to us. Congratulations, you're now part of the team!
 
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Additional Financial Assistance Offered
  • Financial Assistance for Military Families and Students
    As a navy veteran, Dr. Rimland felt a close connection to families in the military who have children with autism. In his memory, the Autism Research Institute and Defeat Autism Now! extend a 33 percent discount to those families who wish to attend. This discount is also available to students.

To receive this discount: Click the Military Families and Students Discounted rate ($85 per day) option on the Conference Registration Form. Current Military or Student ID is required at registration.

  • Defeat Autism Now! Angel Money Fund
    Created two years ago, the Angel Money Fund has helped hundreds of families already. But now, as the need increases, our exhibitors and donors have really stepped up to the plate. Thanks to their generosity, any parent in need of financial assistance for registration just needs to ask. Many of the exhibitors will be distributing their "Angel Money" certificates to families they know of in need. Funds are limited, so we ask that applicants first consider volunteering in order to assure funding for families who otherwise won't have the opportunity to attend. Funds are granted on a first-come, first-served basis.

To receive this discount:

  1. Email Tanya@DefeatAutismNow.com to request a 50-percent-off "Angel Money" certificate.  
  2. Tanya will e-mail it to you on behalf of the exhibitors.
  3. Click the Angel Money $65 per Day option on the Conference Registration Form and enter your certificate number.

Low Rates Continue for Licensed Health Care Providers
Professionals and licensed health care providers retain their conference rates, and CME credits are now offered on a cost-effective daily basis.
Learn More

ARI Releases New and Updated Media Pages to Support Families - Autism.mobi in July and Autism.tv in August
 
mobiIn July, ARI launched its new Mobile Web Site - autism.mobi - to provide mobile-friendly content and services on autism-related issues for users of mobile devices and mobile phones, including the Apple iPhone. 
 
The site includes advice for parents, treatment tips, and answers to frequently asked questions. One especially valuable feature is the Autism Treatment Evaluation Checklist (ATEC), which is designed to evaluate cognitive, communication, sensory, and social skills - as well as the physical health - of individuals on the autism spectrum. Parents and specialists can complete the ATEC on their mobile phones at any time (such as when waiting in the doctor's office), and they can immediately forward the results to their child's or patient's physician for review.
 
Go to autism.mobi
 
Coming Soon: Autism.tv 
autism.tvIn August, ARI will release an updated version of its autism.tv page featuring stories of intervention and recovery. The page is intended to demonstrate to parents, physicians, and research scientists that recovery is a reality for a significant percentage of children with autism. 
 
Links Wanted: Submit your Story
Autism.TV is linking to caregiver stories about treatment and recovery. Please send us existing story links to:
- Videos (youTube, short films, etc.) 
- Videos and published news stories
- Online (written) stories published on the Web   
 
If your written story is not yet online, you may e-mail it to us for consideration (800 words or less).   
 
Join Us at an Upcoming Defeat Autism Now! Conference
Where Parents and Clinicians Pool Knowledge for Effective Treatment

JJohnsonIf you have a child affected by autism you already know that "recovery" doesn't mean "cure." Our conferences provide the latest information for parents and professionals, information that leads to medical treatment and metabolic support sufficient to reduce physical pain and roadblocks in children with autism, to the extent that many are newly able to communicate and learn.
 
Defeat Autism Now! is distinguished by its commitment to invite only the most credible, accredited, and forward-thinking researchers and clinicians as speakers. Information on a medical treatment is presented at our conferences only after a special advisory committee has deemed it both safe and effective.
Our scientific principles and protocols apply to affected children of all ages and varying conditions. Often, an underlying metabolic problem is found to be the cause of symptoms associated with autism, so that when a biochemical "glitch" is identified by lab test and then addressed, the child's "quirk" diminishes or goes away.
 
Is the biomedical approach the only way to tackle autism? Definitely not. Many therapies, including Applied Behavioral Analysis (ABA), occupational therapy (OT), and speech therapy (among others) help a child's chances of improving, and recovering in some cases. But without addressing the physiological disorders and medical conditions that lie at the core of autistic disorders, little true or lasting progress or benefit can be expected.

Defeat Autism Now! is the premier conference worldwide at which parents and clinicians join together to pool their understanding, to uncover causes, focus on effective treatments, and share our happiness at the recovery of some children.
 
We do not claim to have all the answers; in fact, knowing we don't is what keeps us moving forward. But thanks to the insights and tenacity of the parents, and the determination, professionalism, and open-mindedness of our researchers and clinicians, we can say unequivocally at every Defeat Autism Now! Conference: Autism is Treatable. Recovery is Possible! We know this to be true.
 
Looking forward to seeing you at an upcoming Defeat Autism Now! Conference.
 
Jane Johnson
Director, Defeat Autism Now!
Former Law Professor Debunks Munchausen Syndrome By Proxy

In recent years, several mothers in the autism community have been accused of Munchausen Syndrome By Proxy (MSBP), in which the mother is thought to be imagining the medical problems in her son/daughter. Former law professor Dr. Bill Long wrote a review paper for lawyers and judges on MSBP. Dr. Long's Executive Summary is below.

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MUNCHAUSEN SYNDROME BY PROXY ("MSBP")/FACTITIOUS DISORDER BY PROXY ("FDBP")
A Guide for Judges, Lawyers, and Parents
Dr. Bill Long;
drbilllong@gmail.com
Executive Summary

For more than 30 years prosecutors, social workers, and many mental health professionals have used a diagnosis of MSBP/FDBP as a means of taking children from their caregivers and then, often, bringing charges against the caregiver for abusing the children. At the heart of MSBP/FDBP is the allegation that the caregiver (usually the mother) is either lying about the medical symptoms experienced by the child or has induced real symptoms through poisoning or other injurious actions against the child. Why would the mother/caregiver do such a thing? Those who "believe in" the diagnosis argue that she does so in order to get attention from the medical community, often for unmet needs in her own life. Thus, the heart of a MSBP/FDBP allegation is that the mother or caregiver is secretly "working the system" and trying to deceive multiple levels of medical staff as she goes about her nefarious design of injuring and perhaps even killing her child. Because the allegation of MSBP/FDBP relates to child endangerment, it has been a "hot button" sub-issue in the larger world of child abuse that has been at the fore of American social services and law in the past generation...

Read the Summary on autism.com
Million Dollar Puzzle Update 
puzzle pieces 
Autism Puzzle Pieces Distributed:
1,895 packets = 94,750 puzzle pieces
 
Locations: 43 states, Singapore and two locations in Canada (273 cities)
 We are not yet in Hawaii, Montana. Nevada, New Mexico, North Dakota, Utah, Wyoming
 
Update from Puzzle Piece Project Committee Chair Lynda Huggins: "We have forwarded a little over $50,000 to the Autism Research Institute so far.  We are a l-o-n-g way from our goal, but together we can make it happen.  If everyone who cares about someone with autism will donate one dollar, we can do it easily!"
 
Want to Start Your Own Puzzle Piece Campaign?
Request puzzle pieces online and the Puzzle Piece Project committee 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 US and support the research we all want and need."   
 
Autism Studies Enrolling Now
Support and/or funding for these studies is provided by ARI:
  
National Study of Vitamin/Mineral Supplement for Autism
 
Parents and caregivers are invited to enroll individuals with autism to participate in a research study on of a new liquid Vitamin/Mineral Supplement. This study has been approved by the Human Subjects Institutional Review Board at Arizona State University.
 
Purpose: The Purpose of the study is to evaluate the possible effectiveness of a new vitamin/mineral supplement in reducing the symptoms of autism. This will be a national study for children and adults with autism spectrum disorders.
 
Study Design:
  • 12-week treatment study
  • Double-blind, placebo-controlled (meaning half of the participants receive the real supplement)
  • Includes behavioral assessments only (no blood tests)

Eligibility Criteria:

  • Open to children and adults ages 3-60 years
  • Must have certified diagnosis of autism spectrum disorder (autism, PDD-NOS, or Asperger's) \
  • No use of a vitamin/mineral supplement in the last two months
Researchers:
James B. Adams, Ph.D., Professor of School of Materials at Arizona State University, and Sharon McDonough-Means, M.D., Developmental Pediatrician.  
 
For more information and application form, go to http://autism.asu.edu  
 
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Sibling Studies Using Probiotics and Vitamin D
 
Who: Gene Stubbs, MD PC, Independent Contractor, and Kathy Henley. Call 503-351-9255 (Kathy) for more information.  
 
What: Study participation opportunity for two studies for families in the Portland, OR area who have at least one child with autism. Seeking 40 families per study.
 
1) Study of the use of probiotics (supplements that adjust the GI tract) to prevent occurrence of autism in newborn siblings.   
 
2) Study of the use of vitamin D to prevent autism in newborn siblings.  
 
Where:
Portland, Oregon, and Vancouver, Washington metro areas
 
When: Enrolling now
 
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Urinary Porphyrins Study
 
Who: Chief Investigator James S. Woods, Ph.D., Professor, DABT Director, Toxicology Program Department of Environmental and Occupational Health Sciences School of Public Health and Community Medicine, University of Washington.
 
What: Study to confirm that children with autism have higher urine porphyrin levels than other children of the same age. Parents and/or caregivers are requested to provide urine samples from both autistic and non-autistic children ages 2-12 years.

Porphyrin assay results will be provided for free to caregivers of all participants via e-mail at a future date.
 
Where: South Puget Sound and Spokane (vials must be picked up and returned to coordinators in person)
 
When: Enrolling now through Sep. 20 in Spokane and South Puget Sound
 
 
Funding for the Urinary Porphyrins study provided by the National Institutes of Health and the Wallace Foundation 
Buy an Autographed CD to Support Research that Makes A Difference
A portion of the proceeds from Gregory Page's new album will go to ARI
 
pageGregory Page - a singer/songwriter in the Kensington area of San Diego (home to ARI)  - has adopted autism as a cause that he wishes to support. His interest in supporting "research that makes a difference" was sparked by his friendship with his neighbor, Mark Rimland. In 2006, Gregory used one of Mark's paintings for the cover of his album Daydreaming at Night
 
The title track of the new CD "All Make Believe" was inspired by Mark (the lyrics even include a reference to The Secret Night World of Cats, a book that Mark illustrated). The CD includes 13 tracks of delightful songs with appeal for both adults and children. 
 
UPDATE: For a limited time, the CDs will be autographed by both Gregory Page and Mark Rimland.   
 
A portion of the proceeds from sales of the CD will be donated to ARI to support research to discover and validate new treatments for autism.
 
 
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