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May 2012 

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In This Issue
Spring Conference Lectures Now Online
Free Webinar: Science Doesn't Have to Be Scary
Join ARI's Million Dollar Puzzle Campaign
Visit the new Autism.com
ARI: Always Growing, Always Changing
ARI Welcomes New Board Member: Genevieve Athens

ARI Shield Logo

REGISTRATION IS OPEN
Fall 2012 Orange County Conference Oct. 11-14


General Sessions: Oct. 12-14
Science Sessions: Oct. 13-14
Practitioner Seminar: Oct. 13-14
Hyatt Regency OC


ipad

 

Win an iPad at our Networking Party Saturday October 13th 

 

  

register   
enews

Spring Conference Lectures Now Online  

We've started uploading videos from last month's conference to the ARI website, tune in now 

 

Keynote: The Autism Revolution  

After years of treating patients and analyzing scientific data, prominent Harvard researcher and clinician Dr. Martha Herbert offers a revolutionary new view of autism and a transformative strategy for dealing with it. 

 

otero Hablemos de Autismo 

En este taller se discutiran los tratamientos biomedicos, diferentes dietas, modelos para prevencion y otros temas de interes para los padres de los ninos que se encuentran afectados con autismo. El taller sera en Espanol.

 

About our free webcasts:

At ARI, we are committed to free access to the latest information about evidence-based treatments for autism. This free service allows anyone with Internet access to view up-to-date information for free. We rely on the generosity of our donors to make this possible and we hope you'll help support this service.  
Donate now

enews science

FREE ONLINE WEBINAR: NOON CDT THURSDAY, MAY 24th 
The Science Doesn't Have to Be Scary: Understanding Research in the News & Making Evidenced-Based Decisions

 

This free webinar* is for parents & non-medical professionals to   introduce the components of published research and give a foundation of knowledge that will allow participants the ability to read published research and formulate meaningful questions for their clinicians. We will also discuss research articles in the news and ways to be a critical consumer. Presented by Anissa Ryland, Executive Director at The Johnson Center, in collaboration with the Autism Research Institute.   

 

 PRE-REGISTER FOR THE FREE WEBINAR NOW

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.   


May Success Stories:
Recently Kince Davis and his lovely wife Maxine passed away. Mac and Kince loved our Jon and would be very pleased that ARI was selected by their family for memorials in their honor.  

One dollar at a time, the sweet ladies at the Exxon Louisville/Lamy Delta Mini-Mart have collected $397. Each year more and more of their customers have told them of a personal connection to someone with autism.

Devin MacLellan is an autism teacher at Eagle Canyon Elementary School in California.  His students have participated every year since 2009. The total raised thus far by these amazing students is $9,158!

JoAnna Stevens  has loyally supported the Puzzle Pieces project every year since 2007. In six years she has single-handedly raised $1,278.99 for ARI. Way to go JoAnna!!!

Autism Puzzle Pieces have been distributed in 601 cities, and we have forwarded $139,608.03 to ARI!

 
Join Our Mailing List

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  

From the Director:  
edelson

 

Spring has sprung, and I hope the allergy season has been manageable this year so far. Last month we had an exciting and successful conference in Newark, New Jersey. It is always great to meet families and professionals from around the world. We have already begun planning our next big conference in Anaheim, California (Oct. 11-14, 2012).

 

The Autism Research Institute (ARI) is one of the sponsors at the upcoming International Meeting for Autism Research (IMFAR). If you plan to attend the Toronto conference later this week, please stop by ARI's booth and say 'hello.'

 

We have received very positive feedback on the new design and structure of our website, www.autism.com. In addition, there has been much interest in our new e-newsletter titled 'Clinical Research in Autism.' The e-newsletter is published in collaboration with the Schafer Autism Report, and its aim is to inform obstetricians, pediatricians, and nurses about the latest research in the autism field. Please help us and encourage these professionals to sign up: www.ClinicalResearchInAutism.com 

 

And finally, I am happy to welcome Genevieve Athens to ARI's Board of Directors. See the article below.

  

Steve Edelson, Ph.D., Executive Director

Autism Research Institute

www.autism.com  

First in a series of three articles.
The Autism Research Institute - Always Growing, Always Changing

 

Although recent changes at ARI have been discussed in various editorials and presentations, I thought I would write a series of articles that provide a historical perspective and describe how changes at ARI over the past few years reflect the vision and foundation that were created by Dr. Bernard Rimland.  
- Steve Edelson, Ph.D, Director, Autism Research Institute

 

 

ARI Through the Decades

In his 1964 seminal book, Infantile Autism: The Syndrome and It Implications for a Neural Theory of Behavior, Dr. Rimland convincingly rejected Bruno Bettleheim's parent-blaming theory of causation. Afterward, Dr. Rimland started seeking effective ways to treat autistic children; he was impressed by parent reports and early research findings on behavior modification techniques (later termed "Applied Behavior Analysis" or ABA). In 1965, he founded the Autism Society of America, primarily to inform parents about this new and innovative treatment.

 

Throughout the 1970s and 1980s, ARI focused much of its efforts on the orthomolecular approach to treatment, in which nutritional supplements are used, sometimes at therapeutic levels, to improve various medical and psychiatric conditions. During this period, Dr. Rimland discovered that vitamin B6 with magnesium was effective in treating many children on the spectrum. He found that di-methyl-glycine (DMG) was also helpful to many.

 

When the prevalence of autism began to rise in the mid- to late-1980s, there were no evidence-based accepted treatments available. ABA was considered a form of child abuse by many in the autism community; the treatments of choice were powerful drugs that simply dampened "inappropriate" behavior, such as Haldol, Tegretol, and Mellarill. At the time, ARI continued to endorse ABA and nutritional supplements. In addition, parents began reporting benefits from restricted diets; Dr. Rimland started to endorse diets such as the "caveman" diet and the milk-free diet. Due to a limited budget, ARI performed mostly survey research and funded small-scale studies. Dr. Rimland also recruited me to work with him as a research associate in the mid-1980s.

 

In the late 1980s and early 1990s, ARI expanded its efforts to study sensory problems, including hearing, vision, and deep pressure. A few years later, in the mid-1990s, ARI widened its focus and began promoting a whole-body approach to autism, with an emphasis on the underlying biological mechanisms. The "Defeat Autism Now!" project began.

 

The Defeat Autism Now! approach was spearheaded by Drs. Rimland, Sidney Baker, and Jon Pangborn. Its primary goal was to raise awareness that many individuals on the autism spectrum suffered from mild to severe medical problems, such as gastrointestinal (GI), immune, and metabolic issues. Many, but not all, of the treatments associated with the biomedical approach were based on traditional interventions that were often prescribed to non-autistic individuals who experienced similar medical conditions. The word "Now" with an exclamation point was chosen because they wanted to expedite the advancement of treatment and alleviate the pain and discomfort often associated with these medical conditions.

 

Early in the 2000s, ARI began offering clinician seminars to inform physicians of the biological mechanisms associated with GI, immune, and metabolic problems, as well as provide information about various treatments. Around the same time, ARI began posting a registry of clinicians who attended these seminars on their website. However, many people interpreted this registry as a list of trained or certified doctors, even though they had merely attended the seminars. The list of clinicians was removed at the end of last year (December, 2011); the quality of services provided by the listees varied, and we realized that a certification process, similar to the BCBA certification, was very much needed to ensure only the best care for those on the autism spectrum. Rather than risk losing our momentum by transforming into a certifying organization, ARI has chosen to return to its roots, focusing on the treatments that seem to bring the greatest improvement to the greatest number of people-namely dietary modification and nutritional supplements; in the words of Dr. Sidney Baker, "Remove what is causing harm, add what is missing."

 

*****

 

The next article in the series will be published in ARI's June, 2012 e-newsletter.

Welcome ARI Newest Board Member: Genevieve Athens

athensGenevieve Athens is the parent of a teenage daughter with ASD and the President of Autism Lifespan Coach in Portland, OR.   Genevieve was involved with the Autism Society of Oregon (ASO) for 9 years, first as a volunteer for 2 years and then as Executive Director from 2004 to 2011. During her tenure at ASO, Genevieve significantly increased revenue and awareness of the organization. She started the Autism Walk-a-Thon in 2003, began an annual conference, launched two re-branding campaigns, increased statewide chapter representation, and was the lead information and referral person for resources and services in the state.    

Genevieve has presented at numerous conferences and agencies covering a range of topics and has trained the Portland Police Bureau on autism safety and risk management. This year, Genevieve will be a speaker at the Autism Society's annual conference in San Diego and is one of the speakers in the 2012 Swindell's Resource Center's series in Portland, Salem, and Hood River. Genevieve is on the Oregon Commission for Autism Spectrum Disorder and on two Advisory Boards: Oregon Health & Science University Early Childhood for ASD and Portland Public Schools Transition Program.

 

Ms. Athens is from New Orleans and has an MBA. She is married to Corey and has two children, Claire and Cole.

NIH Autism Spectrum Disorder Research: Brain Imaging & Autism Biomarker Study Seeks Participants Ages 18-45

nih

Do we see immune differences in the autistic brain? Research seeks to detect and measure an immune target in the brain. Researchers will compare the brain scans of those with autism to those without autism. If you have autism, Asperger Syndrome, or an autism spectrum disorder, 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

 

National Institute of Mental Health, National Institutes of Health, Department of Health & Human Services

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.

ASD Diet & Nutrition Survey Continues
VegetablesARI is assisting Tiffany Brassard, a graduate student in Nutrition Science at East Carolina University, with a research study to find out more about the diets of children with autism. If you are the primary caregiver of a child with autism between the ages of 5 and 13, please consider completing the survey online.

 

If you have any questions about the administration of the survey, please contact Tiffany

Take the Diet & Nutrition Survey Now 

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