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November 2009

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In This Issue
Take the Autism Seizure-Treatment Survey
Self-Advocacy and Transitioning
New Autism Medical Textbook Released
Reflections from Dallas
Fasano Slides Available Online, DVDs En Route
Million Dollar Puzzle Piece Campaign
Events in the Community

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UPCOMING EVENTS

Winter 2010 Clinician
Conference

Clinician Seminars - Level I and II
Feb. 6-7, 2010
Marriott Waterside Tampa, FL
Online registration coming soon - book your hotel room now  
 
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Spring 2010 Conference
Level 1 & 2 Clinician Seminars, Nutrition Seminar, Parent & Science Sessions
Baltimore, MD
April 8-11, 2010

Fall 2010 Conference
Level 1 & 2 Clinician Seminars, Nutrition Seminar, Parent & Science Sessions
Long Beach, CA
Oct. 7-10, 2010
Autism Seizure-Treatment Survey Continues: Parents Urged to Provide Data
Survey aims to assess treatment efficacy and possible side effects

You can help to further research by filling out a survey form created by Dr. Richard Frye with Prof. James Adams, Co-Chair of ARI's Scientific Advisory Panel.  We think this very detailed form will provide a deeper understanding of the efficacy and possible side effects of seizure treatments. 
 
Complete the Seizure Treatment Survey Online
 
Thank you very much for helping us look for answers.
 
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, Dept. of Chemical and Materials Engineering
Arizona State University
Make a Monthly Pledge to Support Research
ARI's secure online donation form is a convenient way to support our research - 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. 
 
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
Espaņol: 877-644-1184,
ext 5
Join Our Mailing List
From the Director:  

dr. edelsonBest Wishes for the Season! The ARI staff wishes everyone the happiest for all the celebrations of autumn! If you or someone you love is on a restricted diet, many tempting foods will appear as if out of nowhere. Stay strong, and avoid temptation!
 
Last month our ARI/Defeat Autism Now! conference was held in Dallas, Texas, and it was a complete success. (If you were not able to attend the conference, free video presentations will be uploaded to ARI's website within the month. DVDs are also available for sale from ARI.) I would like to thank our staff and volunteers for their hard work, tireless energy, and dedication. I would also like to thank Dr. Sidney Baker for honoring me at the Saturday evening dinner.
 
Last Friday, ARI's Edgeware Gallery sponsored a new exhibition titled 'Art WOW.' Local artists in the San Diego community spent two weekends last month creating artwork for the show, which will run through the month of November. A portion of the proceeds from the sale of the art will be used to fund research in autism. For more information, visit www.EdgewareGallery.com.
 
Earlier this year I was interviewed for the newly released film, Horse Boy. This is a beautiful feature documentary that traces a family's journey to Mongolia as they enter a world of horseback riding and shamanic healing for their autistic son. The film is currently playing in theaters throughout the country.
 
If you are a parent of a child on the spectrum and would like to connect with other parents to discuss issues related to autism, check out ARI's Yahoo discussion group. Go to ARI's homepage, www.autism.com, where you'll find a link in the column on the far right to join the Yahoo group.
 
ARI recently introduced its first application for the Apple iPhone and iTouch. There's no cost to download and install this application, and an enhanced version will be released later this month, including summaries and recommended readings on treatment options, access to ARI's e-newsletters, past issues of our science newsletter, and more. In addition, users can complete our Autism Treatment Evaluation Checklist (ATEC) and save the subscale scores on the iPhone or iTouch. (There will be a 99-cent charge for this upgrade.)
 
Please consider ARI when making your end-of-the-year donations. We are the only national autism organization to receive the highest rating for fiscal management by Charity Navigator (www.CharityNavigator.org), and, as Dr. Bernard Rimland would say, "ARI is involved in research that makes a difference." To make a donation, visit our donation page on the ARI web site.
 
Best Regards,
Steve Edelson, Ph.D.
Director, Autism Research Institute
Self-Advocacy and Transitioning
 
paradizValerie Paradiz, Ph.D. is intimately familiar with the concept of self-advocacy from both sides of the fence. Professionally, she created Integrated Self-Advocacy (ISA) as a curriculum and training series for educators, therapists, and support people. Personally, she saw the dire need for self-advocacy to help her teenaged son with Asperger's.
 
"Elijah was my inspiration for developing the Integrated Self-Advocacy curriculum," says Paradiz. "He felt lonely, he was having difficulty expressing himself and getting his needs met, he was getting bullied, and he became very depressed. Once he was able to become his own self-advocate, life changed for him."
 
Dr. Paradiz has a long history of involvement with transitioning and self-advocacy. In 2003, she founded a school for teens with Asperger's, the ASPIE School (Autistic Strength Purpose and Independence in Education). One of the core educational philosophies of the school was self-advocacy, which empowers students to become active shapers of their sensory and social environments.
 
"For sensory scans,"explains Paradiz, "it all begins with knowing yourself and your specific needs." If an individual on the spectrum is in school or at a workplace setting and feels overwhelmed, they have to first assess the surroundings to determine the possible cause. For example, if they become distracted by fluorescent lighting, or the smell of someone's perfume, they need to first identify this so they can express their needs and take steps to correct or reduce the offending sensory stimulus.  "It's important to remember," says Paradiz, "that the strategies and awareness fostered by the curriculum apply to both vocal and non-vocal individuals."
 
The same kind of awareness building can apply in social situations. Before the individual takes steps toward more conventional social interactions, the Integrated Self-Advocacy ISA Curriculum coaches the teacher, therapist, or parent on how to encourage self-reflection and self-discovery in spectrum children, so they can realize specifically which types of situations are most comfortable and which provoke the most discomfort and anxiety.


Since the early years in the ASPIE School, Dr. Paradiz has enhanced and expanded the lessons, piloting the self-advocacy curriculum in schools across the United States and internationally. She recently returned from training professionals in the Philippines, and will be bringing her workshops to India and Aruba in 2010.
                                  
The ISA curriculum has been adopted systemically by the Socorro Independent School District in El Paso; the staff was trained by Dr. Paradiz. She has also brought the program to the New York City Department of Education's District 75, a Special Education district that serves over 5,000 students on the spectrum. Paradiz does ongoing consulting there so that the district can build capacity, bringing self-advocacy tools to all its ASD students.
 
In addition to educators and therapists, ISA can also be a valuable tool for parents. It's designed to assist parents in introducing essential concepts and "survival skills," such as facilitating sensory and social self-awareness, fostering strategies for navigating self-disclosure, and teaching other building blocks that lead to autonomous self-advocacy.  
 
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The Integrated Self-Advocacy ISA Curriculum is available on Amazon.com, at Dr. Paradiz' website www.valerieparadiz.com, and through the publisher, Autism Asperger Publishing Company (AAPC). 
New Autism Medical Textbook Released

crcIn his 2007 book Changing the Course of Autism, Dr. Bryan Jepson wrote, "We need to redefine autism as a multi-organ metabolic disease that should be removed from the DSM-IV, placed in the medical textbooks instead, and routinely taught in medical schools and residencies." 

We at ARI are thrilled to see a new medical school textbook titled Autism: Oxidative Stress, Inflammation, and Immune Abnormalities, recently published by CRC Press, and edited by Abha Chauhan, Ved Chauhan, and W. Ted Brown.

The book covers a variety of biomedical and neurological topics such as oxidative stress, neuroinflammation, mitochondrial dysfunction, membrane and metabolism abnormalities, and signal transduction (read the chapter headings here). The writers also discuss possible implications for treatment.
 
Many of the contributors have received research funding from ARI, participated in our Think Tanks, and/or presented at our conferences, including Drs. Paul Ashwood, Tapan Audhya, Manuel Casanova, Richard Deth, Martha Herbert, Harumi Jyonouchi, Woody McGinnis, Judy Van de Water, and Stephen Edelson.
 
The book is a bit pricey, but it is a significant contribution to the field of autism; it is available at Amazon.com. Encourage your local library to buy a copy!

Reflections from Dallas
Caregivers share insights from last month's conference

After each ARI/Defeat Autism Now! Conference we conduct a survey to gather thoughts and feedback from the caregivers and professionals who joined us. Here are some thoughts the attendees from last month's conference shared:

crowd2"I thought this conference was fabulous. I have been a parent of a child on the autism spectrum for nearly 5 years, and so I was really looking forward to the educational side of things. I really had not counted on the fact that I would be so emotionally affected by everything I heard. I was amazed to see so many parents and clinicians completely committed to helping these children. It really blew my mind for days afterward. Attending one of these conferences is an absolute must."
- Nicole Chalmers


"The ARI/DAN! conference approach is slowly, but continually, returning our son to our family. We thank God every day for our DAN! doctor. I tell every fellow autistic parent about the protocol. The science behind all of it makes perfect sense." 
- Michelle Sivadon    

clinicians"The 2009 ARI/DAN! Conference exceeded my every expectation. The doctors, scientists, and other professionals who shared their knowledge empowered parents and families to pursue and implement viable, effective treatment options for this scary epidemic. I arrived home with information, literature, and resources that would have taken years for me to collect. And, most importantly, it armed me with tremendous HOPE."
- Maria Croke


dancing"The conference showed me that I am not alone in this journey. There are other parents who are going through this, there are doctors who know how to treat every awful detail, and there are researchers who have dedicated their lives to helping our children. It gave me the strength to push forward and heal my son. We all need to work together for our common purpose of recovery from Autism. I now know that... Together Has Power. Thank you for your inspiration."
- Monica Copeland

Notes from the Fall Conference: Fasano's Slides Now Available Online, DVDs En Route
 
fasanoDr. Alessio Fasano promised his Dallas audience the slides from his talk "Gluten, Leaky Gut, and Autism: A Serendipitous Association or a Planned Design?" Inspired by the overwhelming enthusiasm in the conference evaluations ("My favorite speaker! Finally, someone who can explain how gluten affects the body in a way that non-clinical people can understand. Please have him back again!"), we've invited Dr. Fasano to speak in Baltimore in April, and he's graciously accepted.

Conference DVDs - Update
Are you waiting on a DVD you ordered at the conference? Copies are shipping now - if you have questions, email us.
Report from the Fall Conference: Million Dollar Puzzle Piece Campaign
 
dan table - hugginsAn update on the puzzle project from the Fall 2009 ARI/Defeat Autism Now! Conference...We distributed 41 packets (2,050 puzzle pieces) to attendees and collected $203 -- it would be a great idea to do this at every conference! We added 20 new cities and are now in Hagatna, Guam, Barcelona, Spain, and Saskatoon, Canada! 
 
Current totals: 3,806 packets (190,300 puzzle pieces) in 48 states plus Oslo Norway, Singapore, Hagatna, Guam, Barcelona, Spain, & 6 locations in Canada - Westmount, QC, Brandon, MB, Prince Albert, SK, Saskatoon, SK, Westmount, QC, and Calgary, Alberta  (514 cities)
 
Events in the Community ...
  
National Autism Association's National Autism Conference
nacDATE: November 12-15
LOCATION: Hyatt Regency - Weston, Florida

Speakers include:
Dr. Andy Wakefield, Barbara Loe Fisher, Dr. Dan Rossignol, Dr. Jeff Bradstreet, Dr. Doreen Granpeesheh, Dr. David Berger, Dr. Jerry Kartzinel, Dr. Julie Buckley, Soma Mukhopadhyay, Dr. Anju Usman, and more.

Full Conference Schedule
Register Now
 
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shieldWinter 2010 ARI/Defeat Autism Now! Clinician Conference
Level 1 & 2 Clinician Seminars
Tampa, FL | February 6-7, 2010
Marriott Waterside - BOOK ROOMS NOW!
Online Registration Coming Soon

Spring 2010 ARI/Defeat Autism Now! Conference
Level 1 & 2 Clinician Seminars, Nutrition Seminar, Parent & Science Sessions
Baltimore, MD | April 8-11, 2010
 
Fall 2010 ARI/Defeat Autism Now! Conference

Level 1 & 2 Clinician Seminars, Nutrition Seminar, Parent & Science Sessions
Long Beach, CA | Oct. 7-10, 2010
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