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July 2009

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In This Issue
In Memoriam: Dr. Ted Carr
Adult Farm Prototype Seeks Setting
Seizure Treatment Survey Now Online
ARI in Minnesota Sep. 12-13

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REGISTER NOW

ARI/Defeat Autism Now! Regional

Conference
Sep. 12 - 13
St. Paul, MN

Special Offer!
$25 Buddy Passes

Register


SAVE THE DATE
Fall 2009 Conference

Oct. 8 - 12
Dallas, TX
Online registration starts later in July

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COMING IN 2010
Clinician Seminars - Level I and II
Feb. 5th - 7th, 2010
Tampa, FL

Spring 2010 Conference
April 8th - 11th, 2010
Baltimore, MD

Make a Monthly Pledge to Support Research
ARI's secure online donation form is a convenient way to support our research - and now you can pledge any amount and make payments in installments for as long as you wish.
 
For example: you could pledge $120 for the year, and pay just $10 a month. 
 
Pledge to pay monthly with your credit card (or by automatic withdrawal from your bank account if preferred), and we'll take care of it for you through our secure online merchant account. 
 
ARI ofrece nueva linea de apoyo en Español
(ARI offers new toll-free Spanish-speaking support line)

Con frecuencia escuchamos: "He oído algunas cosas sobre la dieta y tratamientos biomédicos pero no sabia a donde llamar. Desearía haberla encontrado antes y haber ayudado a mi hijo".
 
ARI ofrece ahora una línea telefónica gratuita bajo la dirección de Kerri Rivera, madre de Patrick - ASD de 8 años, y directora de la clinica/hospital Autism02.

Llaman reciben información, contactos y acceso a los recursos disponibles a través del Instituto de Investigación de Autismo (ARI).

Los padres y los cuidadores son animados a llamar para obtener más información de ARI y más allá. Todo con el objetivo de ayudar a los padres ¡Derrota al Autismo Ahora! (DAN!)

Centro de llamadas de Autismo ARI: 877-644-1184 ext. 5

Vea también ARI's Documentos en Espanol
Treatment Ratings
Our Partners
Autism Society of America 
 
Generation Rescue
 
Medigenesis: A New Beginning in Medicine
 
mindd
 
NAA
 
safeminds
 
Schaefer Autism Report
 
TACA
 
Treating Autism
 
Unlocking Autism
 
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The Autism Research Institute collaborates internationally with the following autism groups:

Defeat Autism Now! - Europe
(headquartered in Bologna, Italy)
 
Canada
 
France
France
 
 
Mexico
Mexico
 
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 maintains a toll-free line with information, contacts, and access to resources available through the Autism Research Institute.
English: 866.366.3361
Español: 877-644-1184,
ext 5
Join Our Mailing List
From the Director:  

dr. edelson I would like to wish everyone a pleasant and safe summer season. If your summer plans take you to San Diego, please stop by our office to say 'hi.'  We are open Monday through Friday, and the best hours to visit are between 11 a.m. and 4 p.m.  It would also be helpful if you could let us know in advance of your visit. Our address is 4182 Adams Avenue, San Diego (email Matt Kabler at the ARI office).
 
The Autism Society of America's annual conference will be held later this month, July 22 to 25, in St. Charles, Illinois (near Chicago). This is one of the premier conferences in the country. If you attend, please stop by ARI's booth to meet our staff. We will also be happy to give you complimentary note cards by Mark Rimland. You can learn more about the conference at: www.autism-society.org.
 
Speaking of Mark Rimland, the Edgeware Gallery premiered its new website last week, www.EdgewareGallery.com. Mark is the resident artist, and proceeds from the sale of the artwork supports research on studying effective treatments for individuals on the autism spectrum. The gallery is open on the weekend, and the hours are listed on the gallery's website.
 
Stay cool.

Best Regards,
Steve Edelson, Ph.D.
Director, Autism Research Institute
In Memoriam: Dr. Ted Carr

Dr. Ted CarrIt is very difficult for me to write this about my good friend Ted Carr: Dr. Carr and his wife Ilene were killed in a car accident on June 20 by a drunk driver. He was a supporter of Dr. Bernard Rimland's work and the Autism Research Institute.

Dr. Carr was one of the giants in the ABA community. He did his post-doctoral training with Dr. Ivar Lovaas at UCLA, after which he became a professor at the State University of New York at Stony Brook. Dr. Carr was a true pioneer in the fields of severe behavioral problems (e.g., self-injury, aggression), functional analysis, positive behavior supports, and communication. He published many studies on understanding and treating pain in those on the autism spectrum. You can read more about his contributions to the field, as well as post your thoughts and a message, on the Autism Society of America's website.

Dr. Carr realized the importance of biomedical treatment, and was planning to spend the next ten years of his career integrating biomedical and behavioral approaches. Last year, he co-wrote an article on this with Dr. Martha Herbert, and another paper with me, which will appear in the upcoming issue of The Autism File.  In addition, we had a number of research projects planned over the next few years.

Ted was a very warm and kind-hearted person, always full of energy and enthusiasm about finding ways to help children.

And finally, Ted Carr will best be remembered for his thirty-plus years of research, which will continue to improve the lives of hundreds of thousands of children worldwide. In these and many other ways his spirit will always be with us.

Steve Edelson, Ph.D.
Special Adults Greener Earth Farm Prototype Set to Take Root
Developers seek land donation to create first location

sage
Last summer, I first wrote about SAGE for the e-newsletter  ("Special Adults Greener Earth"). SAGE, started by a group of Massachusetts parents including me, aims to provide a safe and meaningful future on a farm for our autistic adult offspring.  You can see for yourself what we envision in a ten-minute, narrated video, now on YouTube. Simply go to youtube.com and type in SAGE Crossing.
 
In the video, our children are working serenely and purposefully at Littlefield Farm in Boxborough, MA. The video is perhaps just as noteworthy for what it doesn't show: the kind of frustration and challenging behaviors sometimes associated with this population. We believe that the film suggests how successful the therapeutic farmstead model might be for some autistic adults.
 
We are still seeking a land donation to start the first SAGE Crossing Farm, which we hope will be a prototype that could be replicated throughout the country. If you would like to keep abreast of our progress by joining our mailing list or making a tax-exempt donation, please visit the Sage Crossing website.
 
Harriet Barnett
Secretary, and Secretary of the Board - Sage Crossing Foundation

Autism Seizure Treatment Survey Now Online - Parents Urged to Provide Data
Survey aims to assess treatment efficacy and possible side effects

In January 2009 ARI held a think tank on seizures, and in May 2009 Autism One held a related think tank on seizures.  As a follow-up to those, Dr. Richard Frye is working with the attendees on a Consensus Paper on Seizures in Autism and How to Treat Them.
 
If your son/daughter (or you) suffers from seizures, we ask you to fill out a survey form created by Dr. Richard Frye with the help of Prof. James Adams, Science Coordinator of ARI/Defeat Autism Now.  We think that this very detailed form will provide a much richer understanding of the efficacy and possible side effects of current treatments for seizures. 
 
Please help us by filling out the survey form if it applies to you, and also by forwarding information about this survey to other autism groups. 

The purpose is to better understand seizures in individuals with autism spectrum disorders. The survey should take 5-20 minutes to complete, depending on the number of seizure treatments you have tried.

The form asks questions regarding types of seizures you have observed, whether seizures have seasonal variations or vary when allergies flare, and specific questions regarding medications you have used and their efficacy.

If you have more than one child with seizures, please fill out the form for each child.
 
Complete the Seizure Treatment Survey Online
 
Thank you very much for helping us find answers to seizures in autism.
 
Sincerely,
 
Richard E. Frye, M.D., Ph.D., F.A.A.P.
Assistant Professor of Pediatrics and Neurology
University of Texas-Houston
 
James B. Adams, Ph.D.
Professor, Arizona State University
http://autism.asu.edu
Science Coordinator, Autism Research Institute/Defeat Autism Now!
Events in the Community ...  
 
jepsonASA 2009 National Conference
July 22-25 at the Pheasant Run Resort and Spa in St. Charles, IL
 
Nearly 2,000 professionals, educators, parents, and exhibitors from around the US and other countries will participate in the 2009 ASA National Conference.
 
ASA offers continuing-education credits for:
-Behaviorists (BCBA credits)
-Hearing & Speech Professionals (ASHA)
-Educators (Certificates of Attendance)

And for clinicians, Dr. Martha Herbert has assembled a program for Saturday called "Autism as a Complex Crisis: New Developments and Opportunities to Help" that offers 7.5 AMA PRA Category 1 CreditsTM.

Learn More
 
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Back-to-School Autism/Asperger's Conference
Aug. 14-15 at the Pasadena Convention Center

back-to-schoolThis conference will provide a condensed version of the ARI/Defeat Autism Now! treatment guidelines, updated to include the latest research and clinical experience. The "Mini-DAN!" set for Sunday, Aug. 16th comes at the conclusion of the 4th Annual "Back to School" Autism/ Asperger's event featuring more than 30 leading experts including keynote speakers Temple Grandin, Eustacia Cutler (Mother of Temple Grandin), and Cathy Pratt.
 
General Conference: Aug. 14-15
"Mini-DAN!": Aug. 16

Where:
300 E. Green St, Pasadena, CA 91101
 
Learn more:
 
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ARI/Defeat Autism Now! Regional Conference
Minnesota History Center - Sept. 12-13

Join us this September in St. Paul, Minnesota to network with parents and clinicians using the ARI/Defeat Autism Now! approach. Licensed medical providers can earn CME credits attending our Introductory Workshop* Sunday while exploring the latest research and treatment findings.
 
$25 Buddy Passes are available exclusively to attendees who pre-register online by Sep. 9th. 
 
lineupSpeakers include:
- Nancy O'Hara, M.D.
- Kyle VanDyke, M.D.
- Dan Rossignol, M.D.
 
 
* Attendance at our general conference, Mini-DAN!, or Introductory Workshop does not count toward being listed on the ARI Clinician Registry. To be listed, clinicians must attend our Nutrition Seminar or our Clinician Seminars.

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Saving our Kids Healing Our Planet Green Expo 
Newark, New Jersey Sept. 12-13

sokhop
Saving Our Kids, Healing Our Planet is not just another Green Conference! This two-day event sponsored by the University of Medicine and Dentistry of New Jersey - New Jersey Medical School (UMDNJ) and the city of Newark is the first green children's health expo in New Jersey.

This event focuses on Prevention and Natural Treatments for Symptoms Associated with
Asthma, Obesity, Autism, ADHD, Allergies, Childhood Cancers, etc. Speakers include Elizabeth Mumper M.D., Deidre Imus, Kenneth Bock, MD, Lisa Lewis Ph.D., and many more.

Learn More
  
100% of the profits generated by SOKHOP are donated to Vital Interventions Accessible (VIA), a non-profit organization devoted to helping families of children with disabilities seek safe and effective interventions and therapies, and to The Autism Center at UMDNJ.

puzzle pieces
Join our Million Dollar Puzzle Piece Campaign
Now's the perfect time to order your free Puzzle Piece kits and launch an autism awareness campaign in your community. When we raise the funding necessary, ARI will see that important research is done, including the large-scale, independent study of vaccinated vs. unvaccinated children
 
Update from Organizer Lynda Huggins:
We have raised several thousand dollars as a result of Autism Awareness Month. With checks and money orders the total is now $78,136.22!  I am aware of other donations in the mail to me.  We are closing in on $80,000!
 
We have distributed 184,950 puzzle pieces to 48 states (still not in Montana or North Dakota.) We are in 477 cities.
 
We need to stress that this is a year-round, worldwide effort, and we will continue until we reach our goal.  What we really need is a nationwide chain to come on board.  Anyone with a connection to a nationwide or even a statewide business is encouraged to contact me for a professional packet to present.
 
We have had offices designate their "casual day" funds to us.  There have been puzzle drives in schools where they decorated the walls with one big puzzle.  Kids have gone door to door in their neighborhoods.  Donations were collected at churches, in front of grocery stores and WalMarts.  Many puzzle pieces were distributed at Autism Awareness events. There are so many ways to seek donations and the public is now very aware of the autism epidemic. 
 
My sincere thanks to everyone who has participated. We still have a LONG way to go. Together we WILL reach our goal.

 
Hugs,
Lynda


Watch ARI/Defeat Autism Now! Conference Presentations Online

At the Autism Research Institute, we are committed to free access to the latest information about evidence-based treatments for autism. We are pleased to continue offering presentations streaming online from past conferences. This convenient service allows anyone in the world to view up-to-date information for free.

Tune in today to view or listen to scientific talks, presentations, and panels by top experts from around the world.

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