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August 2009

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In This Issue
Fall Conference Hotel for $129/night
Autismo Blog
Article: Health Insurance Help - Paying for Biomedical
Didn't get your Puzzle Pieces? Let us know
'Mini-DAN' set for Pasadena this Month

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REGISTER NOW!

ARI/Defeat Autism Now! Regional

Conference
Sep. 12 - 13
St. Paul, MN

Fall 2009 Conference
Oct. 8 - 12
Dallas, TX

Special Offers!

Buddy Passes
Angel Funds
Conference Web Site

Register

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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
 
Affordable Luxury at the Fall Conference

fairmont


 

 

 

 

We've negotiated a special conference rate at the Fairmont Dallas of just $129 per night for Fall 2009 ARI/Defeat Autism Now! Conference attendees.

Please reserve your room early to take advantage of this offer - space is limited and the rooms are going fast. Book Now!


autismo2
Autismo Blog de Kerri


AUTISMO, blog de Kerri es un lugar donde Kerri plactica de las cosas que pasan en su clinica sobre los tratamientos biomedicos dentro de una semana. Ayuda mantener los que hablan el espaņol al tanto de lo que pasa actualmente. 

ARI ofrece nueva linea de apoyo en Espaņol Centro de llamadas de Autismo ARI: 877-644-1184 ext. 5
 
(Blog by Kerri is completely in Spanish. It's about the biomed treatment that takes place at her clinic during the course of a given week. Its purpose is to keep the Spanish speaking community informed. ARI offers a new toll-free Spanish-speaking support line at 877-644-1184 ext. 5)
Annual Phoenix Zoowalk Set for October 17th
zoowalk - phoenix
It's that time of year again and we hope you'll volunteer to walk (in person or online - virtual walkers are welcome), or sponsor a walker, to help fund research that makes a difference.
 
All proceeds from the Phoenix Zoowalk go to fund Autism/Asperger's treatment research at Arizona State University and ARI.

Goal for 2009: Raise $150,000 for a study of several autism treatments, including diet and nutritional supplements in 100 children and adults with autism.
  

 
Questions?
Call: 480-831-2047
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. 
 
Watch free conference webcasts online


The Autism Research Institute is committed to open access to the latest information about evidence-based treatments for autism. We offer presentations streaming online from past conferences, a service which allows anyone in the world to view up-to-date information free of charge.

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

View Defeat Autism Now! Webcasts
 
We rely on the generosity of our donors to make this possible, and we hope you'll help support this service.
Join the ARI Listserv
ARI offers a parent-support listserv, intended as a forum where parents can compare notes, laugh, cry, or share recipes and resources--for anybody interested in or committed to the Defeat Autism Now! approach to treatment for autism spectrum disorders.  For more information, click here.
 
Treatment Ratings
Our Partners
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Medigenesis: A New Beginning in Medicine
 
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safeminds
 
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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
 
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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. edelson As always, there is quite a bit going on in the autism community, and the staff and volunteers at ARI are very busy maintaining our many programs as well as beginning new ones.  Right now we are preparing for the regional Defeat Autism Now! conference in St. Paul, Minnesota (Sept. 12-13), our big fall conference in Dallas (Oct. 8-12), and our biannual think tank this weekend in Chicago. Dr. Bernard Rimland began sponsoring biomedical think tanks in 1995, during which many top researchers and clinicians spent two days discussing the latest research results and their implications for treatment. 
 
The Autism Society of America (ASA) recently sponsored another great annual conference. Last month's conference was held in Chicago, and I was honored to co-chair it with Liz Roth and Dr. Stephen Shore. Dr. Jim Adams, ARI's science coordinator, was recently elected to the ASA Board of Directors.  Congratulations Jim!
 
My 14-year old daughter Micaela attended the ASA conference with me. She helped with the preparation of the conference as well as assisting with ARI's exhibit booth. Micaela is organizing a FaceBook page for ARI.  She is a real trooper!
 
It's been a very hot summer for many of you, so I wish you the best in keeping cool.

Best Regards,
Steve Edelson, Ph.D.
Director, Autism Research Institute
Help Needed for a Book for Siblings 
Submissions sought for new compilation about autism from the siblings' perspective
JJohnson
Dr. Bernard Rimland collected stories from a number of families with grown children with autism, most of which were written by a generation who were told their own emotional frigidity had caused their child's autism--the so-called "refrigerator" mothers, unfairly blamed decades ago.  Despite an appalling lack of services, with hard work by parent and child, most of these children ended up in a pretty good place.  Bernie thought the stories might make a useful book someday, but he died before he could make that happen, so Dr. Edelson sent them on to me, my mother and I did a little copy-editing and Families of Adults With Autism; Stories and Advice for the Next Generation (available under Books by Defeat Autism Now! Speakers in the ARI online store) was the result.

Dr. Melissa Olive of the Center for Autism and Related Disorders recently mentioned how much she'd enjoyed the book.  "Now you have to do a book of sibling chapters," she said.  I knew she was right. Life is difficult for our children on the spectrum, but it's also difficult for their neurotypical siblings.  Children are wired to spot favoritism from their parents; it's virtually impossible to treat a child with special needs exactly the way we treat the others, who can be left with a potent mix of resentment and guilt.  We think it would be tremendously comforting for children to read about those who've walked in their shoes.  If you know a sibling of any age who might like to write their story for this project, please email me - jane@autism.com

Thanks,
Jane Johnson
Director, Defeat Autism Now!

(Please note that should the chapters be published--a publisher has already expressed interest--any royalties will benefit ARI, as with the first book.)
 
Health Insurance Help for Families of Kids with Autism: Paying for Biomedical
By Judy Converse, MPH, RD, LD
 
 
converseOf all the challenges families affected by autism face, the financial burden might be the most daunting. Costs can include myriad therapies (OT, PT, speech, ABA), fees for private education settings or legal representation to secure appropriate public education, specialized respite care providers (a 13-year-old who took the babysitting course doesn't cut it), and last but not least - the biomedical expense. Some estimates are in the millions of dollars by the time a child with autism is an adult - which is the moment government supports fall away.  
 
Biomedical treatments shouldn't break the bank. Good providers will help you manage the cost, and insurance might cover more than you think.
 
Here are pointers that might be helpful: 
 
  • Your biomedical provider should describe your child's care with the correct procedural and diagnosis codes. Insurance companies regard autism as a neurological and/or psychiatric diagnosis, so coding biomedical treatments under an autism diagnosis code would cause them to be rejected for payment.  Truthfully identifying nutrition problems (e.g., "moderate calorie malnutrition," "allergic gastritis," "failure to thrive") with the correct nutrition diagnosis codes should trigger payment. For example, a prescription for a casein-free diet will follow a diagnosis code for "history of milk allergy." These should not be coded as "autism" but as the physiological findings they actually are.
  • Work with a licensed health care provider. Health insurers might not pay providers who aren't regulated by state laws. MDs must meet licensure requirements in all 50 states. Naturopaths are licensed in some states but not others (and there's a difference between naturopaths and Naturopathic Physicians, who have graduated from accredited schools); nutrition professionals are licensed in 45 states.  CA, CO, AZ, NJ, and WY do not license or monitor the nutrition profession.  Anyone can be a "nutritionist" in these states - buyer beware.  Well-credentialed providers who work in states without licensure often maintain a license in another state, because this permits regulation of their practice and helps insurance payment for their clients.  
  • Be prepared to appeal your health insurer's decision on this care.  Nutrition care is often rejected outright, to discourage claimants.  If you have nutrition concerns of any nature for your child, request a written referral for nutrition assessment from your in-network pediatrician.  Attach this to your statement for the biomed/nutrition claim and submit them together to your insurance.  It must show codes for diagnosis, procedures, and location, along with your provider's license number, national provider identifier number (NPI), and tax ID number.  Making sure all these numbers are on your statement will enhance odds for coverage.  Valid nutrition concerns for a young child include poor growth pattern, rigid or self-restricted diet, eating non-food items, constipation or diarrhea, reflux, poor total food intake, vomiting, bloating, eczema from foods, and so on.
  • Some states mandate insurance benefits for nutrition care and specialized medical foods for certain nutrition diagnoses. If your insurance provider has told you, "We don't cover nutrition care," challenge this, as it might be illegal for them to withhold nutrition care for a child under certain conditions.  Explore your benefits and your state law regarding nutrition care for children. Your child might actually meet codes that trigger payment.
  • All states have a federally mandated Early Intervention Program, administered locally through regional agencies. The EI Program mandates in-home services for children age 0-3 regardless of income if they have any developmental, learning, or nutrition issues. Nutrition services, OT, PT, speech evaluations and care can be paid for by this program.  If you have an infant or toddler with feeding, growth, developmental, or nutrition problems, you can self-refer to this program, or ask your pediatrician or local pre-school staff how to contact your region's EI Program service provider.
  • If there isn't a biomedical specialist in your area and you can't travel to one, engage your local in-network providers to see if they will help you with biomedical treatment. My website, http://www.NutritionCare.net, has downloadable, peer-reviewed articles you can share with your pediatrician, neurologist, or other MD providers.  (They might be hesitant to help when they don't feel adequately informed on special diets and biomedical tools.)  Check the resources and education materials sections of this site - and inform them!
Improving access to good biomedical care, special diets monitoring, and nutrition care are crucial tools we must leverage as early as possible.  They can improve developmental outcomes, reduce needs for other care, and lessen the need for residential placement in adulthood. 

For more information on this topic, read Judy's new book (available under Diets through the ARI online store), Special Needs Kids Eat Right: Strategies To Help Kids On The Autism Spectrum Focus, Learn, and Thrive. Judy Converse MPH RD LD is a licensed registered dietitian who has specialized in autism since 1999. 

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

As we announced in last month's enewsetter, Dr. Richard Frye is working with recent ARI/Defeat Autism Now! Think Tank attendees on a Consensus Paper on Seizures in Autism and How to Treat Them. Parents are invited to submit their data online through a brief online survey; we are pleased that the response so far has been excellent. If your son/daughter (or you) suffers from seizures and you haven't had a chance to complete the form, we hope you'll take a moment to provide this crucial data.

About the Survey
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 a form for each.
 
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, Arizona State University
http://autism.asu.edu
Science Coordinator, Autism Research Institute/Defeat Autism Now!

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 necessary funding, ARI can further important research, including the large-scale, independent study of vaccinated vs. unvaccinated children
 
Update from Campaign Chair Lynda Huggins:
We have sent out 3,712 packets of 50 puzzle pieces to 48 states Norway, Singapore & Canada (479 cities). (Still not in Montana or North Dakota.)  We have forwarded over $80,000 to ARI.  We have a LONG way to go, but all it would take is a dollar donation from every person who loves and cares about someone with an autism spectrum disorder.  WE CAN MAKE THIS HAPPEN.

If you submitted a request for puzzle pieces recently and didn't receive a confirmation or your packets, please resubmit your request - we briefly experienced technical difficulties - but we don't want your request to be forgotten!


Events in the Community ...  
 
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 for friends or family are only available 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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Educating & Healing Children with Autism
2nd Annual New York City Autism/Asperger's Conference


acaDATE: October 3-4, 2009

TIME: 8:30 am - 5:00 pm each day

LOCATION:
Stephen Gaynor School
148 West 90th Street
New York, NY 10024

Keynote Speakers:

Saturday: Eustacia Cutler (mother of Temple Grandin) - Personal and Historical Reflections

Sunday: Nancy O'Hara, MD - Biomedical Treatments for Autism from A to Zinc

Presentations include:
  • Nutritional Problems in Children with Autism: Assessment and Treatment - James Adams, Ph.D.
  • A "Best Practices" Model of Behavioral Treatment for Autism - Doreen Granpeesheh, Ph.D., BCBA
  • Writers Panel: David Kirby, Kim Stagliano, Barbara Fischkin, Dan Olmsted & Stephen Shore
  • Teaching Yoga Skills to Young Children with Developmental Delays - Deborah Gruber, M.Ed., Ph.D.
Learn More
Register Now

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ARI/Defeat Autism Now! Fall 2009 Conference
Dallas, TX - Oct. 8-12

shieldRegistration for our Fall 2009 Conference - Oct. 8-12 in Dallas - is now open at www.DefeatAutismNow.com.

We are very pleased to announce that the fall conference offers a variety of new financial support options for families, including: Buddy Passes, free attendance for volunteers on days they help, and 50% Angel Fund discounts for families in financial need. You can even save $5 by 'Going Green' - receiving your conference manual electronically online.  Angel funds and volunteer options are limited and offered on a first-come/first-served basis. 
 
Join us as we explore the latest information and effective treatments for autism:
  • Learn the latest research and treatment findings
  • Take advantage of practical support in our demo room for taking a biomedical approach home
  • Network with parents and clinicians using a biomedical approach
  • Earn CME credits attending our Clinician or Nutrition Seminars (licensed medical providers) 
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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., Deirdre 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 to pursue safe and effective interventions and therapies, and to The Autism Center at UMDNJ.
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