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January 2010

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In This Issue
In Memoriam: Allan Goldblatt
Winter Clinician Conference Registration Continues
New Papers Investigate GI Disorders in ASD
A Foot in Each World: Dr. Stephen Shore
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
Register Now   


Spring 2010 Conference
Level 1 & 2 Clinician Seminars, Nutrition Seminar, Parent, & Science Sessions
Baltimore, MD
April 8-11, 2010
Online registration starts later this month

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Fall 2010 Conference
Level 1 & 2 Clinician Seminars, Nutrition Seminar, Parent, & Science Sessions
Long Beach, CA
Oct. 7-10, 2010
beatles
Beatles show at ARI's Edgeware Gallery continues
Don't delay: Ends Feb. 14th
 

Edgeware Gallery's Beatles: Art and Artifacts show set a record for the largest opening night crowd in the gallery's one-year history. A crowd was lined up 20 minutes before the doors opened at 5 p.m., and the attendance was excellent. The fundraising event was promoted by local radio stations, newspapers, and half-a-dozen Beatles sites also picked up the press releases. For any readers who would like to get a 'flavor' of the event, a Beatles-related video that Edgeware produced is available online.

Edgeware Website

puzzle pieces
Gear Up for Autism  Awareness Month
Join ARI's Million Dollar Puzzle Campaign
 
Now's the perfect time to order your free Puzzle Piece kits and prepare to launch a campaign in your community during Autism Awareness Month this April. 
Request Puzzle Pieces
 
Campaign Update:
The Puzzle Pieces Project continues to receive requests for puzzle packets from folks allover the country. Parents, grandparents, siblings, cousins, teachers, doctors, therapists, and many, many others have joined our efforts to fund badly needed autism research. I love hearing the stories of the unique ways the puzzle pieces have been distributed.
 
Kids have built puzzles on school walls, brides have distributed them to wedding guests, grocery stores and other businesses (some of which have actually matched funds collected) have lined their walls with the brightly colored puzzle pieces, professional organizations have adopted us as their philanthropy project, and folks have set up booths at autism workshops and conferences.
 
Most recently I was told that the puzzle pieces are mounted around the entire front office of the Evanston, IL Parks, Forestry & Recreation in City Hall. You guys are certainly finding unique ways to increase autism awareness! We also had several online donations at the end of 2009. Every dollar helps!We are an all-volunteer effort, and every penny of every dollar collected is forwarded to ARI and is dedicated to funding research. As of today (including donations I have just received) we have collected $89,600.64. We are now in 526 cities.
 
I know that our goal of a million dollars may seem a long way off, but together we will make it happen. Hey, we're closing in on our first $100,000 now! How I wish we could get some national chain to adopt our project. Let me know if you have any ideas along that line. Now is a good time to approach businesses in your communities about distributing the puzzle pieces during Autism Awareness Month next April. Locally our plans include a Motorcycle Run for Autism.
 
My sincere thanks to everyone who is helping build the Million Dollar Puzzle.I wish you all a very happy New Year. Let's make 2010 a great year for Autism Research.
 
Hugs,
Lynda Huggins
Mom to Jon, age 34
Autism Seizure-Treatment Survey Continues: Parents Urged to Provide Data
Survey aims to assess treatment efficacy and possible side effects

You can help advance research by filling out a survey form designed by Prof. James Adams, Co-Chair of ARI's Scientific Advisory Panel, and Dr. Richard Frye. This very detailed form will provide a deeper understanding of the efficacy and the possible side effects of seizure treatments. 
 
Complete the Seizure Treatment Survey Online
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 with autism groups abroad:

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 Editors:
Jane Johnson
Dave Gillerman
Stephen Edelson, Ph.D. 
 
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. edelsonThe new year has begun - I hope your plans, hopes and wishes for 2010 come true.
 
This first month of the year is turning out to be an important one. Earlier this week an article titled "Gastrointestinal Disorders in Individuals with Autism Spectrum Disorder" was published in Pediatrics. Twenty-seven experts reviewed the research on gastrointestinal problems associated with autism, concluding that pediatricians need to be aware of, and treat, such problems. In addition, they urged that more research be conducted in order to determine prevalence, cause, and treatment. View it online through the Pediatrics website.

Later this week ARI will sponsor a 2½-day think tank in Dallas. Many of the top researchers and clinicians in the field will meet to discuss cutting-edge topics as well as develop an agenda on how to proceed with future research in autism. ARI will begin investigating the topography of self-injury, and we plan to distribute an online survey within a few weeks. Once we upload the survey to the Internet, we will send out an announcement to subscribers to this e-newsletter.

ARI also sponsors an art gallery in which a portion of the proceeds is used to fund autism research. Our 'Beatles at Edgeware' opening on December 26th was a huge success with approximately 250 people in attendance. The show will close in mid-February. You can learn more about the exhibit at www.EdgewareGallery.com. You can also view a live video stream of the gallery as well as watch a Beatles-related video online.
 
Wishing everyone a Happy New Year in 2010! 
Steve Edelson, Ph.D.
Director, Autism Research Institute
 
In Memoriam: Allan Goldblatt
ARI mourns the passing of a pioneering clinician who helped develop the biomedical/Defeat Autism Now! approach
 
goldblattIt is with great sadness that we announce that Allan Goldblatt passed away last week, on December 29th. He played an important role in the development of the biomedical/Defeat Autism Now! approach. He attended most of our think tanks and presented several times at the science portion of our conferences. A kind and warm person, his brilliance and insight into autism has had a significant impact in the autism community. 
We are so grateful for all of his contributions to advancing effective treatments for autism - he will be remembered with deep affection, and greatly missed.
Registration Continues for Tampa 
Clinician's Seminars set for Feb. 6-7
 
tampa2Hotel rooms at the Conference Hotel - the Tampa Marriott Waterside Hotel and Marina - are available for $169 per night, February 3-9, 2010. Reserve your room with a credit card through our secure online registration form. Rooms are going fast! Want to reserve your room now but register for conference sessions at a later date? Visit our conference hotel registration site. 
 
Next month's clinician seminars in Tampa are designed exclusively for licensed healthcare professionals who provide primary medical care to children and adults diagnosed with autism spectrum disorders. We'll be offering our Level 1 and Level 2 clinician seminars Saturday-Sunday, Feb. 6-7:
  • Level 1 Clinician Seminar - $695 (includes CME): A two-day seminar for review of the scientific data supporting the medical treatment of ASD. LEVEL 1 SCHEDULE 
  • Level 2 Clinician Seminar - $695 (includes CME): A two-day seminar designed for clinicians with prior experience. LEVEL 2 SCHEDULE
Both seminars are approved for 14 hours of AMA-PRA Category 1 Credits™. Don't need CME credits? Waive this option when you register online and you'll save $50 off your conference fees.
 
 
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Online Spring Conference registration for parents, caregivers & clinicians coming soon
Join us April 8-11 in Baltimore for Level 1 & 2 Clinician Seminars, Nutrition Seminar, Parent, & Science Sessions
 
We are very pleased to announce that the Spring Conference will offer a variety of financial support options for families, including: Early-Bird Rates, free attendance for volunteers on days they help, and Angel Fund discounts for families in financial need. Angel funds and volunteer options are limited and offered on a first-come/first-served basis.
 
Watch for our eblast when online registration begins later this month!
 
New Papers Suggest Guidelines for Diagnosing and Treating GI Disorders in Individuals with Autism
Pediatrics reports need to evaluate and treat ASD individuals for GI symptoms 
 
All too often parents are told that their child's GI symptoms are "normal" for someone with autism, and sent home without investigation. Because many individuals with ASD might have undiagnosed medical conditions, often involving the gastrointestinal tract, ARI, ASA, Northwest Autism Foundation, and Easter Seals of Oregon sponsored an unbiased review of the evidence linking gastrointestinal disorders with autism. ARI's Dr. Stephen Edelson commented, "This is truly a human rights issue; every child deserves proper medical attention--whether or not they have autism."

On May 29-30, 2008, a multidisciplinary panel led by Dr. Harland Winter and Dr. Timothy Buie of Harvard Medical School met in Boston, Massachusetts to develop consensus statements and recommendations for evaluating, diagnosing and treating GI disorders in individuals with ASD. Working groups included 27 experts in child psychiatry, developmental pediatrics, epidemiology, medical genetics, immunology, nursing, pediatric allergy, pediatric gastroenterology, pediatric pain, pediatric neurology, pediatric nutrition, and psychology.  The meeting resulted in the publication of two papers in the January 4th edition of Pediatrics: "Evaluation, Diagnosis and Treatment of Gastrointestinal Disorders in Individuals with ASDs," and "Recommendations for Evaluation and Treatment of Common Gastrointestinal Problems in Children With ASDs." 

The crux of the problem is that "for children with ASD, behavioral indicators may be the only manifestation of pain."
The medical literature does not address modifications in the diagnostic evaluation based on the needs of people with disabilities, such as impaired language, and when symptoms are not recognized as related to an underlying medical condition, relevant diagnostic studies might not be considered.Parents and physicians should be on the lookout for the most common GI disorders reported in people with ASD: chronic constipation, abdominal pain with or without diarrhea, encopresis, GERD, and abdominal bloating.  Problem behaviors such as self-injury and aggression, as well as sleep disturbance or irritability, might be indicators of stomach pain.

Many families report improvements in behavior following initiation of gluten-free and casein-free (GF/CF) diets. The authors wrote: "
Anecdotal reports that restricted diets may ameliorate symptoms of ASDs in some children have not been supported or refuted in the scientific literature, but these data do not address the possibility that there exists a sub-group of individuals who may respond to such diets. Professional supervision of restricted diets is recommended to prevent nutritional inadequacies." 
 
It's noteworthy that of the 3,593 parents who responded to ARI's survey,
69 percent felt that their child improved on the diet while only 3 percent felt that their child got worse.  (We agree that a trained nutritionist or dietitian should guide any trial of a restricted diet. Toward that end, ARI sponsors a Nutrition Seminar twice a year to train professionals in the proper implementation of this and other diets.)


Dr. Buie, et al. conclude, "The approach to evaluation and diagnosis of possible underlying medical conditions, in particular GI disorders, should be no different from the standard of care for persons without ASD"- in other words, there is no excuse for sending a patient home without the same investigation that would be granted to neurotypical peers. Parents who feel their child might have GI dysfunction or disease should bring these important papers to the attention of their physician. "These published reports bring much-needed focus to gastrointestinal problems that are commonly associated with the autism spectrum. The conclusions are clear: physicians need to be alert and responsive to such problems when treating these patients; additional research on prevalence, cause, and appropriate treatment is imperative," says Dr. Edelson.

Dr. Stephen Shore: A Foot in Each World
Living, learning, and loving with ASD

Stephen ShoreDr. Stephen Shore is well known to the community, and undoubtedly gives hope to countless parents concerned about how their child on the spectrum will fare in the "real" world.

Stephen was initially diagnosed with "Atypical Development with strong autistic tendencies," was nonverbal until age four, and was recommended for institutionalization. Today, Stephen's accomplishments speak for themselves: he's a professor at Adelphi University where he teaches courses in autism and special education; he's a media powerhouse, having authored, edited or been involved with four books and one DVD dealing with autism; he's an accomplished speaker, speaking often both domestically and internationally, and he's happily married, to boot.
 
The common thread of all of Stephen's activities is his passion both to help his fellow "spectrum-mates," specifically in the areas of self-advocacy and disclosure, and simultaneously, to increase awareness and understanding of autism in the neurotypical world. Stephen is able to move effortlessly between the two worlds, and is accepted and respected in both.
"I serve as sort of an ambassador between people with autism and those who aren't on the spectrum," says Shore. "I'm able to function in both spheres by engaging an 'NT emulator,'" he says, displaying his frequent tongue-in-cheek wit.
 
If Stephen purports to engage his NT emulator in some situations, in his latest DVD project "Living Along the Autism Spectrum," he is merely himself.  Stephen, and Robert Naseef, a psychologist specializing in autism who is also the father of a son on the spectrum, tell how autism has affected each of them personally.  In doing so, both Dr. Shore and Dr. Naseef reflect on such issues as social skills, sensory sensitivity, family grief, and coping mechanisms, the effect on siblings, and many other topics that are approached from both an academic perspective as well as from an intimate first-person point of view. The moderator of the DVD is Dr. Daniel Gottlieb, a psychologist who has a grandson on the spectrum.
Dr. Shore's first book Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome delivers pragmatic information in an accessible manner. The book, written in an autobiographical style, focuses on strategies for educating a child with autism.
 
His critically acclaimed breakout book Understanding Autism for Dummies" is a compendium of different approaches, from ABA to biomedical, matching best practice to the unique characteristics of every individual with ASD. There is certainly no "one size fits all."  As Dr. Shore says, "When you've met one person with autism, you've met one person with autism. Everyone's different."
Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum, as the title suggests, largely deals with issues relating to the acceptance and accommodation to the reality of ASD within school, workplace, and other environments. All six of the chapters are written by people on the autism spectrum.
 
It is worth noting that Dr. Shore is very confident and competent as a professor at Adelphi, as well as in the role of conference presenter, working as an author, and giving music lessons to children with autism.  Nevertheless he is acutely aware of his limitations in some social arenas. "I can be oblivious when it comes to office politics," says Shore. "Whereas the NT population can intuitively decode non-verbal signals and can gain information from 'the grapevine,' these are areas in which I know I am challenged."  Consequently - both in his writing and in his speaking - Dr. Shore seeks to empower those on the spectrum to also be aware of their particular needs and deficits - whether they be sensory, or social - and through self-advocacy, to accommodate for those needs.
 
Dr. Shore is a professional colleague and close personal friend of ARI's Director Dr. Stephen Edelson. "I find Dr. Edelson's combination of acceptance and understanding of people with autism, combined with his commitment to helping people with autism lead fulfilling and productive lives to their greatest potential, a true gift to the autism community." More than 25 of Dr. Shore's scholarly articles can also be found on ARI's
www.autism.com site, including articles on such topics as dating, marriage, teaching strategies, and employment.
"ARI (and its website, www.autism.com) is a great resource for people seeking information on biomedical causes and treatment of autism - not as a cure - but rather with the objective of improving the health, and therefore the lives, of people with autism," Dr. Shore said. 
 
More about Stephen, his writings, and activities can be found on his website:
www.autismasperger.net.
Events in the Community ...
  
shieldWinter 2010 ARI/Defeat Autism Now! Clinician Conference
Level 1 & 2 Clinician Seminars
Tampa, FL | February 6-7, 2010
Register Now
 
Spring 2010 ARI/Defeat Autism Now! Conference
Level 1 & 2 Clinician Seminars, Nutrition Seminar,
Parent & Science Sessions
Baltimore, MD | April 8-11, 2010
Registration starts later this month
 
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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Anaheim Autism/Asperger Conference - Anaheim
Feb 6-7, 2010  
 
acaWhen:  
Saturday & Sunday Feb. 6-7, 2010
 
Where:
Anaheim Convention Center (3rd floor)
800 W. Katella Ave., Anaheim, CA, 92802
 
Learn more & Register Online:
Register
 
Organized by: Autism Conferences of America
In Collaboration With: ASU Autism/Aspergers Research Program, ARI, Autism Society of California, Autism Speaks, Autism Spectrum of Support (ASOS), Center for Autism and Related Disorders, TACA (Talk About Curing Autism) 

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TACA's Real Help Now Conference - Madison, WI
rhn
9 a.m. - 5 p.m. Saturday, Feb. 27
 
Where:
Candlewood Suites
5421 Caddis Bend, Madison, WI 53711
 
Featuring:
Lauren Underwood, Ph.D.
Kyle Van Dyke, M.D.
Anju Usman, M.D.
Dan Rossignol, M.D.
donate 
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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, paying 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.