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June 2012 

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In This Issue
Join ARI's Million Dollar Puzzle Campaign
Visit the new Autism.com
ARI: Always Growing, Always Changing
Photo Contest: Enter to win an iPad and other great prizes
Fall Conference Discounts - Register Now

ARI Shield Logo

REGISTRATION IS OPEN
Fall 2012  

Orange County, CA Conference Oct. 11-14  

General, Science, Adult Services  & Practitioner Sessions 

Hyatt Regency OC


ipad

 

Win an iPad at our Networking Party Saturday October 13th 

 

 

 

register   
Spring 2013 Conference 
Baltimore, Maryland
April 11-14
Registration opens this November
 
Want to see what happens at the Conference? 
View free lectures from past conferences online - including the latest lectures from our Spring 2012 conference in Newark. 

nih

NIH Autism Spectrum Disorder Research: Brain Imaging & Autism Biomarker Study Seeks Participants Ages 18-45 
Do we see immune differences in the autistic brain? Researchers will compare the brain scans of those with autism to those without autism. If you have autism, Asperger Syndrome, or an ASD, consider participating in this research study. The study includes 2-4 outpatient visits of 2-6 hours each at the NIH Clinical Center in Bethesda, Maryland. Participation includes physical and psychological evaluations.  

 

Eligibility criteria: adults ages 18-45; a diagnosis of autism, Asperger Syndrome, or an ASD; and good general health. The study also includes an MRI brain scan, and a PETscan (with a radioactive drug that attaches to a brain target involved in the immune system). There is no cost to participate. Compensation is provided for participation. Transportation may be provided.

 

For information call: 301-435-8982
(TTY: 1-866-411-1010), or 

 Email Us 

Please refer to protocol # 11-M-0118

 

Participants Needed: Needs and Services for Adults with Autism Survey 
Peter Sciabarra, a doctoral student at the University of San Diego, School of Leadership and Education Sciences is conducting research in support of his dissertation involving a comparative evaluation of autism support and resource organizations and how they serve the needs of high functioning adults on the autism spectrum. He is also the parent of a 20-year-old young adult with high-functioning autism. He is looking for participants willing to participate in a survey.

puzzle pieces   

Creating Awareness & Funding Research That Makes a Difference: ARI's Million Dollar Puzzle Project  

Launch your Puzzle Piece campaign today to promote autism awareness in your community. The colorful pieces cost only a dollar, and all proceeds go to the Autism Research Institute. It's easy: we send you a kit with everything you need - you simply pass it around the office, take it to local stores, or sell pieces at meetings and events. Just about everyone will give a dollar to help this great work.    


Autism Puzzle Pieces have been distributed in 601 cities, and we have forwarded more than $140,000 to ARI!

 

Have you v
isited the new Autism.com yet?

Our updated site features easier access to information about the emerging research and treatment findings in autism. With intuitive navigation and improved layouts, users will find the resources they need. Most of the content from the legacy web site has been converted to the new site, including conference videos, the English, Spanish, Russian and Italian ATEC form, Dr. Rimland's newsletter archives, and research abstracts.   

Visit www.autism.com  

Join Our Mailing List
From the Director:  
edelson

 

With the ending of spring and the school year, many families are making plans for this coming summer.  If you are spending your holiday in San Diego, please stop by our office (4182 Adams Ave) to say 'hi' and visit ARI's Edgeware Gallery.  Dr. Bernard Rimland's son, Mark, has many new paintings on display.  The gallery's next big opening event is scheduled for Saturday, July 28.

 

FYI:  This summer we plan to publish a new book titled Nutritional Supplement Use for Autistic Spectrum Disorder by Dr. Jon Pangborn.  We will let our subscribers know how to purchase a copy of the book as soon as it's available.

 

Have a great summer!

  

Steve Edelson, Ph.D., Executive Director

Autism Research Institute

www.autism.com  

Second in a series of three articles.
Dr. Rimland's Pioneering Spirit
rimland In the late 1950s, Dr. Bernard Rimland and his wife realized that their son Mark had autism. Given the lack of information and support available from the medical community, Dr. Rimland did what he could for nearly half a century to uncover the underlying causes and determine the most effective treatments for his son-- and for countless others on the autism spectrum.

 

Dr. Rimland stressed the concept of quality of life for all those with a developmental disorder. He understood the importance of investigating underlying causes of autism, but he always felt a real urgency to help people on the spectrum in the here and now, especially those who suffered from medical and sensory problems.

 

His vision was for pediatricians worldwide to be knowledgeable about autism, and equipped to provide families with advice on how best to develop a treatment plan. He also envisioned obstetricians advising what to do and what not to do during preconception and pregnancy.

 

Rimland knew that research was needed to demonstrate treatment efficacy, eventually resulting in an accepted, evidence-based standard of care. Without such research, families would continue to struggle to find effective treatment strategies, sometimes relying on questionable and untrustworthy sources.

 

When parents and clinicians shared their experience about new treatments, Dr. Rimland believed that other parents as well as professionals had the right to know about such innovative interventions. Transparency was always important to him; he felt strongly that everyone should receive full disclosure about treatments.

 

From time to time promising treatments have always captured the attention of families and clinicians in the autism community. Dr. Rimland closely monitored both the published research and the anecdotal reports, as ARI does to this day. Sometimes unsupportive research is published, complemented by disappointment for parents and clinicians. Rather than hold to our personal beliefs, we must always remain open to new information in order to avoid compromising the safety of our loved ones or wasting valuable time and money.

 

Dr. Rimland strongly opposed the prescription of mood-altering drugs, since they typically inhibit or mask symptoms, and can leave the subject in a stupor. He felt that treatments should be aimed at treating core symptoms, so he supported the orthomolecular approach to treatment, including nutritional supplements and restricted diets.

 

Given the heterogeneity of the autism community, Dr. Rimland was well aware that no one treatment will help everyone on the autism spectrum; he was often puzzled why researchers would sometimes conclude that a treatment was ineffective when they simply grouped everyone on the spectrum together for their analyses, without considering individual differences. His initial work on subtyping autism, which continues today at ARI, might someday determine the appropriate interventions for each person.

 

Because some professionals worry about giving parents false hope regarding prognosis, they often wind up giving no hope at all. Dr. Rimland witnessed first-hand with his son, and from reports from thousands of parents, that many, if not most, on the autism spectrum could benefit from treatment.

 

Throughout his almost 50-year career in autism, Dr. Rimland was constantly checking the pulse of the community. His plan for ARI was that it would always progress forward by monitoring the quality and the magnitude of the research, while listening carefully to the needs of families and those on the autism spectrum. Similar to all other successful organizations, ARI has adapted to change.

 

The Autism Research Institute continues to follow Dr. Rimland's lead in clearly informing families and their sons/daughters about the current status of research and therapies through our conferences, hardcopy newsletter and e-newsletters, website, discussion groups, and much more. In addition, ARI continues to conduct and fund research, sponsor think tanks, and network researchers, clinicians, and families.

 

The third article in this series, to be published next month, will describe how ARI's current programs and initiatives continue to follow Dr. Rimland's vision.

Freezer Failure Impacts Autism Research

We are saddened by the recent news of a freezer malfunction at the McLean Hospital in Boston. Approximately one-third of the samples from the Autism Tissue Program (ATP) have been damaged. This unfortunate incident is devastating to the science community as well as the autism community as a whole. We want to express our heartfelt appreciation to those family members who donated the tissue.

 

The world isn't perfect, and accidents happen. We must hope that this incident will compel those who manage such freezers to re-assess the safeguards necessary to preserve such precious material, such as routine tests of the alarm system and the backup-power generators. Another worthwhile procedure, employed by the NICHD and the University of Maryland Tissue Bank, is to distribute the tissue in many freezers, so that there are no more than one or two autism cases stored in any one freezer.

 

Research on brain tissue is important because it will help us understand which specific areas of the brain are affected by the disorder, and this will likely provide needed information regarding both prevention and treatment.  

 

Despite this unfortunate incident, we hope parents will consider donating their son's/daughter's tissue to an autism tissue bank after an untimely passing. This, of course, is an emotional and difficult decision. Discussing this with relatives and friends in advance might make such a decision easier in times of great stress.

 

The kind of difficult decisions we make today must surely better the quality of life for future generations.

 

Autism tissue banks:

 

Photo Contest: Help Us Tell ARI's Story in a Snapshot

contest As an ARI e-news subscriber, you may have seen the recent notices about our new website at autism.com. We're excited about the updates and now we are inviting our subscribers
you to be part of the story.    

 

Sharing images is akin to telling our personal stories - and telling our stories helps strengthen the autism community by providing new information and insights, and feeling not only connected, but inspired by snapshots into one another's worlds. We hope you'll share a favorite image of a loved with autism who inspires you every day.  

 

We've launched a photo contest. The theme is "A Story in A Snapshot."  Pick your best photo of your loved one with autism, upload it through our easy-to-use website, and you'll earn a chance at some great prizes.   

 

The deadline for submissions is midnight, June 30, 2012 (CDT). ENTER NOW

 

Grand Prize Winner (a $500 value):

Win your choice of:

10 Photo Finalists will win:

A copy of Dr. Martha Herbert's Autism Revolution and a one-year subscription to ARI's Autism Research Review International.

  

Finalists and Grand Prize Winner will be selected from among all eligible entries by photography/marketing consultants. Professional photos may be entered - be sure to contact the photographer or store where the photo was taken to obtain a release if copyrights apply. 
   

Book Early for Great Rates at the Fall Conference in Orange County, CA 

We've brought back our popular "Buddy Pass" rates exclusively for a limited time.

 

buddy3 Pre-register a group of two or more online to attend a General or Science track, then add as many friends as you want for the sessions they want, and you'll all save 25% on your registration.  

REGISTER NOW

 

Note: 25% Discount does not apply to practitioner seminars, fees for continuing education credits, or special events. Discount is automatically applied at checkout when you register online.

 

GENERAL CONFERENCE VOLUNTEER SLOTS & ANGEL FUNDS

We also offer a variety of financial support options including free attendance for volunteers on days they help, and Angel Fund discounts for those in financial need. Angel funds and volunteer options are limited and offered on a first-come/first-served basis. See Parent/Caregiver Rates for details.
 
PROFESSIONAL VOLUNTEER OPPORTUNITIES
We also have a limited number of volunteer slots for licensed health care providers in our demonstration room, teaching hands-on support in exchange for free admission and CME at the Saturday and Sunday Science sessions. Email our Demonstration Room Coordinator for more information.

This email was sent to denise@autism.com by autismresearchinstitute@gmail.com |  
Autism Research Institute | 4182 Adams Ave | San Diego | CA | 92116