December 20, 2007
ARI logo
In This Issue
Fund Research Selling on eBay
Take ARI's Treatment Effectiveness Survey
'Still From Mars and Venus' - Editorial by Jane Johnson
Coordinator Maureen McDonnell, RN to Focus on the Roles Nutrition and Environment Play in Health
Advocate Lyn Redwood Assumes Defeat Autism Now! Conference Duties mid-'08
Screening Materials Sent to 20,000 Pediatricians
Foggyrock Website Provides 'Social Space' for Families
In Memoriam
Bernard Rimland
Bernard Rimland
1928-2006
 
SAVE THESE DATES
 
Defeat Autism Now! Spring Conference, set for Cherry Hill, New Jersey - April 4-6, 2008
 
Defeat Autism Now! Clincian Seminar at Autism One in Chicago, IL May 22, 2008
 
Defeat Autism Now! Fall Conference, set for San Diego, CA Oct. 2008
Funding Research That Makes A Difference 
Members of the autism community have initiated several fundraising campaigns in 2007 to support ARI's goal to Defeat Autism Now!
 
In November, ARI received the coveted "Four Star" Award for sound fiscal management from Charity Navigator (www.CharityNavigator.org) for sound fiscal management. This marks the fourth consecutive year that ARI has been recognized in this way, and ARI is the only national autism organization awarded the highest rating.
This month marks the end of our 40th anniversary; you can help celebrate ARI's four decades of accomplishments and honor the memory of Dr. Rimland by sending a donation to ARI during the holiday season. 

ARI is a 501(C)(3) non-profit organization, and donations are tax-deductible. Those sending a donation of $30 or more will receive a gift of a softbound copy of "The Secret Night World of Cats," written by Helen Landalf and illustrated by Mark Rimland. Helen and Mark are Bernard and Gloria Rimland's children. (The book will be sent before March of 2008.)
 
Sell Puzzle Pieces

Million Dollar Puzzle Pieces!
Join volunteers nationwide selling Puzzle Pieces, with proceeds to ARI's Research Fund. Our goal is to raise $1 million--for the research we can't get our government to fund. Made of heavyweight poster paper, the pieces measure 6"x6" and come in six bright colors. You can ask a local business to display them, paid for and signed by their customers.  (It draws attention to the business as well as the project, and makes people feel good when they participate.) The pieces can be displayed separately or connected to form a large puzzle. Stick some on your door, or better yet, stick one on yourself!  (The Million Dollar Puzzle Committee is having some laminated, with pins attached-wearing one of these is a surefire way to break the ice and start the flow of information.) The Committee can also provide you with a packet to present to businesses and corporations that might be interested in backing autism research at the grassroots level. We plan to announce our new Puzzle Pieces website soon.

 

To be part of this groundswell effort, e-mail the project's founder, Lynda Huggins, at:

puzzles------------
Buy Autism Awareness Calendars
 
http://www.ezzznights.com/order.html
 
- 100% of proceeds fund ARI's
research. Sponsored by Ezzz Night Pajamas. 
------------Donate Online
Send your cash support through ARI's online store. All major credit cards accepted.
Bernie's Wall
 
The RIMLAND Center
, a state-of the-art autism treatment facility and pediatric practice offering specialized care, training, and networking, was opened this fall in Lynchburg, Virginia by Dr. Elizabeth Mumper. 
 
For just $50, you can buy a personalized brick that will help pave the way to a brighter future for families living with autism. These bricks will build both a memorial wall in remembrance of Dr. Bernard Rimland, founder and former director of the Autism Research Institute, and a Walkway of Hope honoring those facing autism in their lives every day.
 

Proceeds from sales of the bricks will support The RIMLAND Center and the Autism Recovery Research Fund (a collaboration of non-profit organizations working together to fund treatment-based research).

Fund Research on eBay!
 
You can support ARI by buying and selling on eBay.

If you list items on eBay and designate that you wish to donate at least 50% of the winning bid to ARI, your auction item will be listed on ARI's www.autism.com eBay search link. When you visit the www.autism.com website you can click on the search link, instantly check out all the items for sale, and if something strikes your fancy, when you buy it you'll and at the same time help fund research to find effective treatments for autism. (In addition, the seller receives a tax deduction.)

Seller Instructions: Simply mention 'Autism Research Institute' in the description of your item. We suggest that you also mention that 50% (or more) of the proceeds from the winning bid will be donated to the Autism Research Institute. Make sure you spell out Autism Research Institute (all three words) because our eBay link searches specifically for them. Note: you do not need to notify us in advance of your listing, as our staff will periodically check the listings.

Buyer Instructions: Every time you visit www.autism.com, make sure to check out the eBay search link. When you see something that you or someone you know would enjoy, an added pleasure is knowing that your purchase helps support the work of ARI. See current listings on the ARI eBay Search Link

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Schaefer Autism Report
 
TACA
 
Treating Autism
 
Unlocking Autism
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About the ARI International
E-Newsletter:
This is compiled, written, and edited by ARI parents and it's meant to be interactive: 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 addressed, please send it to us at: e-newsletter@autism.com
 
Contributing
Editor:
                                       
Kendra Pettengill
 
Production Editors:
Denise Fulton
Jane Johnson
 
Technical Support:
Chris Olds
 
Additional Assistance:
ARI has a toll-free line for information, contacts, and access to resources available through the Autism Research Institute:
866.366.3361
 
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From the Director:
Steve Edelson
In the year since Dr. Bernard Rimland passed away, his photographs, awards, and writings scattered throughout our office provided the staff and me with comfort and the inspiration to do everything possible to help children and adults with autism, and their families. I would like to thank everyone for their support and encouragement during this transition at ARI.
 
There are many important projects planned for 2008, and in order to ensure that everything we do is done well, I've asked Jane Johnson, a board member of ARI, to serve as the executive director of Defeat Autism Now!  Some of you know Jane as the co-author of Dr. Bryan Jepson's Changing the Course of Autism. She is also the co-managing director of the board of Thoughtful House Center for Children. Most importantly, she's the mother of an affected child. The staff at ARI, the Defeat Autism Now! Executive Council, and I look forward to working with Jane.
 
Using Dr. Rimland's memory as a guiding light, we've been able to accomplish a great deal. We continue to maintain ARI's ongoing projects, including publishing our quarterly newsletter, the Autism Research Review International, sponsoring two large Defeat Autism Now! conferences and several mini-Defeat Autism Now! conferences, maintaining an informational website, and funding cutting-edge research. As Dr. Rimland would often proudly state, we are doing "Research That Makes a Difference!" 
See ARI's accomplishments for 2007
 
ARI's staff includes two full-time workers, Matt Kabler (Director of Operations), and me, along with several part-time staff, most of whom are   parents of children or adults with autism; they are located throughout the country, and I thank them all for their hard work and dedication. read more...
 
Steve Edelson, Ph.D.
Director, Autism Research Institute
Take ARI's Treatment Effectiveness Survey 
Please take a moment to fill out the Autism Research Institute's "Parent Ratings of Behavioral Effects of Biomedical Interventions."

Here's why: for 30 years ARI has collected and tabulated parent ratings on the usefulness of treatments. More than 25,000 parents before us have helped make this survey the premier information exchange of what works and what doesn't in treating autism.

Results are posted online as a general guide; the survey is also instrumental in developing research initiatives, so it's of incalculable value to both parents and scientists. Thank you for adding your piece of the puzzle to this impressive resource.
 
 
View parent ratings:
 
Still from Mars and Venus
By Jane Johnson, Executive Director of Defeat Autism Now!
 
JJohnsonMy marriage was young when John Gray's Men Are from Mars, Women Are from Venus was published in the early '90s. I got the basic idea from the media without reading the book, including that when most men read the newspaper, they're so focused that they're not very aware of anything else. Until then, if I failed to get a response from my husband at breakfast, it felt like he was thinking, "I'm reading the newspaper, which is filled with important information. You, on the other hand, have nothing of value to say, so I will ignore you." But John Gray said that it really wasn't personal after all! He said that's just the way men are built. And the magazine articles about the book had other helpful explanations for male behavior. I stopped expecting my husband to behave like a woman, and we were both much happier.
 
When I recently set out to find an explanation for gender-related responses to a child's autism diagnosis, I had a hard time finding useful models. Most of what's been written about parental grief concerns the actual death of a child; contending with the loss of our imagined neurotypical child is not at all the same. The second most common topic is the response to permanent disability-also not on target.
 
The closest I could get was very general: William Schatz wrote a booklet called "The Grief of Fathers" in which he says, "A man sees his wife frequently crying, having 'blue days' and openly able to talk about her pain. In contrast, he may be irritable or angry and less able to verbalize his pain. She may see lack of openness as not caring. He may think there's something wrong with her because she's still crying after six or eight months, or that something is wrong with him because he's not sharing the same emotional response as his wife."
 
Years ago, when I first heard that marriages tend to dissolve after the death of a child, I was mystified. I assumed that mutual grief would serve as a bond-I didn't realize then that men and women almost never grieve in the same way at the same time, leading to feelings of isolation from each other and profound loneliness.
 
But that only covers the sadness part. Since autism is treatable, there's a second area of possible dissonance--how will a couple approach treatment?  I've heard of people saying, "Our child will try a gluten- and casein-free diet over my dead body." (Why such resistance? It's not brain surgery.)  Some instantly assume that biomedical treatment is quackery, and they're not willing to read the supporting scientific studies. Some think a child should be accepted exactly as he or she is, which is fine if the child is healthy, and usually happy (rare). Some pour their heart and soul into productive work for the autism community, but essentially ignore their own child's needs. Some, of course, are in denial because they can't bear to see the problem. And many roll up their sleeves and get to work. So the odds of any two people responding exactly the same way are slender, and when you add that to a cocktail of grief, it's hardly surprising that as many as 80% of couples divorce following an autism diagnosis.
 
The book I wanted, "Martian and Venusian Responses to an Autism Diagnosis" hasn't been written yet, maybe because the field of psychology hasn't caught up with the recent epidemic, or perhaps because the responses are too varied for sweeping stereotypes, and so don't lend themselves to definitive (and career-enhancing) studies.
 
It's overwhelming to simultaneously grieve, start the treatment research process, and drag along a reluctant spouse, but because fighting to recover a child is particularly difficult for a single parent, I urge all of us to try to forgive the other for not reacting exactly as we do, to let our partner off the hook, over and over and over again. We need to set aside the measuring stick when we look at each other's grief. The end of comparing makes partnership possible, in this or any endeavor.
 
Jane Johnson is the co-author of Dr. Bryan Jepson's book "Changing the Course of Autism."
Passionate 'Sense of Urgency' Leads Maureen McDonnell, RN to New Horizons
Defeat Autism Now! Coordinator moves on to focus on the roles the environment and nutrition play in the health of women and children

MaureenInspired by her sense that environmentally-triggered tragedies like the autism epidemic can be prevented, and the arrival of her granddaughter in 2007, Defeat Autism Now! Conference Coordinator Maureen McDonnell (right, with granddaughter Myrika McDonnell) is moving on next year.   
 
"As a pediatric nurse for 30 years, I've witnessed the rise in childhood cancers, ADHD, asthma, allergies, autism, and bi-polar disorders," McDonnell said. "Since we now know many of these conditions are tied to oxidative stress, poor nutrition, and environmental toxins, I feel an urgency to  get this information out!"
 
Maureen served 10 years as a director and Conference Coordinator for Defeat Autism Now! Her last event in this role is the Cherry Hill, NJ Conference, April 4-6. 2008. In 2004, she worked in partnership with Jaquelyn McCandless, M.D. to create the mini-Defeat Autism Now! Conferences and the physician's training/seminar programs. She also created the Defeat Autism Now! nurses program with fellow colleagues who shared her interest in training other professionals about implementing effective treatments.  
 
"In the beginning it was just Bernie Rimland, Sid Baker, and Jon Pangborn choosing the course for Defeat Autism Now! to follow and giving me direction, and there was a tremendous amount of work to do in creating the infrastructure for the conferences. But Defeat Autism Now! is all grown up, and it seems like a good time to step back and take stock of my life.  It's been very satisfying working on something of such vital importance, but I know that it's in strong, capable hands--like a parent whose child is ready to head off to college, I'm not needed in the same way anymore--and I find myself itching to get back to the work I used to do."
 
One of the first projects she's planning is a "green" expo for children called "Saving Our Kids, Healing Our Planet" (SOKHOP.COM). She says having her first grandchild was a transforming experience, inspiring her to do more to ensure the health of future generations of children. 

Experts at the event - which is intended for parents, pediatricians, teachers, therapists, and kids - will present the holistic approach to raising healthy children in a toxic world, the role of diet and supplements in recovering children from many chronic conditions, safe methods for vaccinating children, green landscaping, organic clothing, ways to make homes more eco-friendly, why it's worth the effort to get kids to eat organic, healthy food, and much more. SOKHOP will take place Sept. 26-28 in Charlotte, NC; all profits will benefit Vital Interventions Accessible - VIA.  VIA is a non-profit organization started by Maureen and her new partner, mom Jill Urwick. VIA provides financial assistance for families seeking biomedical interventions. 
 
Maureen is also planning the Southeastern Women's Conference: Time for Our Power! "
Women Bringing Change to the World"with Jane Fonda, June 20-22 in Asheville, NC. WWW.TIMEFOROURPOWER.COM. The conference will focus on environmental awareness and sustainability, political activism, holistic health and self-care, and the power of positive intention.
 
We asked Defeat Autism Now! Founder and Executive Committee Member Sidney M. Baker, M.D. to reminisce about Maureen:
"In 1997 Defeat Autism Now! was in its infancy. Bernie Rimland placed the organization of its first meetings on the broad shoulders of his "staff" - consisting basically of one person (Mallie Odle, a wonderful, capable woman who had worked with Bernie since 1962), whose plate was already full. He recruited Maureen, who had shown her emerging administrative skills in organizing meetings in the New York area.
 
Maureen has since run a decade of national and regional meetings and training seminars. In the space of our meetings, where feelings of anger, helplessness, hope, and love have created traffic patterns of strong emotions, Maureen's steady passion has been to form a container - a working space where both the feelings and the facilities work. The Defeat Autism Now! family of parents, clinicians, and researchers will remember her hard work and preserve her accommodating and demanding spirit.
 
In 2007, Maureen McDonnell moves on, leaving Defeat Autism Now! with her parting gift of an efficient and calm space to ease our contact with new friends, mixed emotions, and long hours of old seat cushions and new information. She takes with her our love and thanks for the hard work and high spirit she brought to our cause."
 
From Nancy O'Hara, MD:
"I first met Maureen nine years ago, but not as a colleague -- I came to her as a patient
; she guided me through the complex issues of infertility by teaching me the importance of building a strong foundation -- through diet and digestive health - while showing incredible compassion and empathy for me as a person. A practicing pediatrician, I had come from a family steeped in western medicine, but Maureen encouraged me to "just try it and see for yourself." And I did. And I overcame infertility and forever changed the course of my life and my perspective about practicing medicine.
 
I congratulate Maureen - it's exciting to see her pursue her dreams. I have valued her so greatly as a resourceful colleague  and a good friend. Her work and example will continue to serve as a lasting encouragement as we keep advancing this parent-driven Defeat Autism Now! movement."
 
From Liz Mumper, M.D.
"As a relatively "new kid on the block" who took on the Herculean task of being Medical Director after 10 years of the incredible Sid Baker, I needed major help. Maureen was amazing in her ability to clue me in to the nuances of how to work with a group of mavericks, help me through a myriad of details related to conference planning, and keep me focused on our mission of helping as many children as possible. I will miss her passionate explanations to our audiences about why diet and nutrition are so important. She has my undying gratitude for her past and future efforts."
Lyn Redwood To Head Up the Defeat Autism Now! Conference Team
Parent Advocate Set to Assume Coordinator Role in mid 2008
 
Lyn and Will RedwoodWith the changes coming in 2008, we asked Conference Coordinator Maureen McDonnell to share her thoughts about the future of the Defeat Autism Now! Conference: 
 
"Defeat Autism Now! has had an influx of creative and dedicated people in recent years.  Subsequently, it is a strong movement and I feel confident it will thrive in its mission to provide help to the many families who have been affected by autism.  With the multi-talented Lyn Redwood, RN, MS (pictured here with her son, Will) coming aboard, Defeat Autism Now! will not skip a beat. This organization will continue to provide exceptionally professional and well organized programs."  
 
Lyn is the co-founder and President of the Coalition for SafeMinds along with serving on the board of the National Autism Association. She co-authored Autism: A Novel Form of Mercury Toxicity, a landmark paper linking the symptoms of autism with excessive exposure to mercury that was published in Neurotoxicology, Medical Hypothesis, Molecular Psychiatry, Mothering Magazine, and Autism-Asperger's Digest. She has appeared on Good Morning America with Diane Sawyer, the Montel Williams Show, as well as being interviewed by U.S. News and World Report, Wired Magazine, and People. Lyn is prominently featured in the award-winning book by David Kirby, Evidence of Harm.
 
Lyn's first Defeat Autism Now! Event will be a one-day clinician's seminar at the Autism One Conference in Chicago May 22.
 
Coming in our January Issue: Lyn Redwood Prepares for New Role as Defeat Autism Now! Conference Coordinator
ASD Screening Materials Go Out to 20,000 Pediatricians West of the Mississippi
 
CHAT PosterARI is pleased to announce that in partnership with HANS (Help Autism Now Society), we funded distribution of almost 20,000 physician autism packages to all the pediatricians west of the Mississippi. They arrived at a crucial time; in October the American Academy of Pediatrics released a statement that all children under two should be screened for autism.  Physicians typically do not receive training in autism screening and these materials teach how to screen at 18 months, and emphasize how important this is. 
 
HANS developed these materials for pediatricians and other primary care physicians to enable them to more quickly and easily recognize and diagnose autism so that early treatment can begin.
Materials include: 
  • The Physician Handbook with over 100 illustrations depicting the "behavioral" symptoms of autism.
  • The CHAT Screening poster based on the Checklist for Autism in Toddlers: a screening tool validated by use on over 16,000 toddlers in the UK. At 18 months, if a child is not pointing, not looking when you point, and showing no evidence of pretend play, the risk of autism is over 90%. The CHAT poster is a simple, objective tool for physicians to use even in a busy primary care setting.
  • The CHAT screening tool, a 4-minute CD tutorial, clearly demonstrates how a physician might perform the CHAT autism screening on a toddler in an office setting.
The CHAT is not a diagnostic instrument; however, it will flag at 18 months those children most severely at risk for autism, so they can be referred for further evaluation and early intervention services if needed.
 
Northwest Autism Foundation (NWAF) concurrently funded distribution of these materials to all the Family Practice physicians in Montana, Idaho, Alaska and Washington. HANS in 2006 distributed over 3,000 packages in Oregon including all the pediatricians and family practice physicians. 
HANS is looking for partners who are interested in helping distribute the materials to pediatricians east of the Mississippi, and to the remaining family practice physicians west of the Mississippi.
 
Internationally, HANS has been approached by individuals and organizations in Canada, Mexico, Northern Ireland, Nigeria, and the Ukraine regarding distribution of these materials in their countries.  HANS would like to hear from individuals/organizations who would like to partner on any of these international projects, or are interested in distribution to their own city or state in the US. 
 
Please contact Linda Lee, Executive Director, HANS:  linda@helpautismnow.com
 
The materials in the packages sent to physicians can be viewed online at the ARI website, www.autism.com and at www.helpautismnow.com
 
HANS was founded in 2002 by a physician and nurse from Salem, Oregon. They are parents of a child with autism.
Website Provides 'Social Space' for Families Living with Autism
foggyrock
 
Foggyrock.com is a social site for family, friends, and providers for individuals with autism. When you register (a quick two-step process), you become a member of this amazing community of people who care deeply about autism. Features include:
  • Design a personal page: share information, communicate with other members, download photos (video functionality will be available soon), journal, make friends and just share.
  • Forum: throw out thoughts or questions for the other members to review.
  • Library: browse for relevant topics and contribute to the library for others to access.
  • Groups: host and participate in online discussion groups

Learn More

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