November 30, 2007
ARI logo
In This Issue
'Parents As Partners' - New Initiative Unites Scientists and Stakeholders
'Don't Sell the Farm' - Editorial by Jane Johnson
Krigsman Lectures to Sell-Out Crowds In the Northwest
Congratulations Dr. Stephen Shore
Letters: Million Dollar Puzzle Piece Update
In Memoriam
Bernard Rimland
Bernard Rimland
1928-2006
 
SAVE THE DATE! 
Don't miss the next Defeat Autism Now! conference, set for Cherry Hill, New Jersey - April 4-6, 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!
 
Sell Puzzle Pieces
Volunteers nationwide are selling puzzle pieces to benefit ARI's Research Fund--our goal is to raise $1 million.

 

For more information, or to request puzzle pieces to sell, 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 be used to 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).

http://www.vianow.org/index.html
 
'VIA' Provides Assistance to Families Seeking Effective Treatments

Earlier this fall, we announced the launch of VIA - a 501(c)3 non-profit organization that funds projects with a focus on making biomedical treatments accessible to families of children with autism. VIA has developed a Family Assistance Program, offering financial assistance to qualifying families for biomedical treatments. 

As a new non-profit organization, VIA has just begun fundraising. It has developed several sponsorship programs, and will host various fundraising events throughout the upcoming year. Read more on VIA's Web site
Calling Active Parent Leaders
Are you an active parent leader helping other families implement the biomedical approach? Join ARI's monthly conference call to learn what's available, how to access the new resources, ask questions, offer suggestions and feedback, and connect with other parents. To learn more, e-mail: autismresearchinstitute@gmail.com.
 
Translators Needed
ARI strongly believes every family living with autism should have access to the information and data we offer. Help us if you can, by translating these into other languages.

To Help:
Please send an e-mail to:
autismresearchinstitute@gmail.com
and list languages in which you are proficient.
 
Our Partners
Autism Society of America 
 
Generation Rescue
 
Medigenesis: A New Beginning in Medicine
 
NAA
 
safeminds
 
Schaefer Autism Report
 
TACA
 
Treating Autism
 
Unlocking Autism
Join Our Mailing List
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 submit 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 offers a toll-free resource line with information, contacts, and access to resources available through the Autism Research Institute.
Call: 866.366.3361
 
See our Web site:
From the Director:
Steve Edelson
Last week was the anniversary of Dr. Bernard Rimland's passing one year ago.  Much has happened at the Autism Research Institute and in the autism community since then.  We continue to miss him greatly, and are grateful his spirit will always be with us.
 
We hope to finish up a number of the many new projects we took on in 2007 by the end of the year, and then begin several important new projects in 2008.  Within a week or two I plan to write a summary of our recent accomplishments. 
 
ARI relies on the generosity of donors like you to continue to keep parents and professionals up-to-date through our websites, newsletters, e-newsletters, conferences, think tanks, and more. We depend completely on donations to fund research that makes a difference! 
 
Earlier this month we were proud to learn ARI has again received the coveted 'Four Star Award" by Charity Navigator for sound fiscal management - 2007 marks the fourth consecutive year that ARI has received this honor. ARI is the only national autism organization with this highest, four-star rating.
 
Please consider sending a donation to ARI during the holiday season!
 
Happy Holidays,
Steve Edelson, Ph.D.
Director, Autism Research Institute
ARI Announces 'Parents As Partners'
Research Initiative Joins Scientists and Stakeholders
 
ARI is pleased to announce a new initiative: "Parents as Partners" in autism research. Parents who have children with the diagnosis raise millions of dollars annually for autism research, but typically they have little say about where research efforts are focused. This ambitious initiative acknowledges
that the experiences and observations unique to parents are valuable resources in guiding research into the most promising areas of investigation.
 
Parent representatives from the participating advocacy organizations serve to inform, solicit, review, and fund autism research in the following areas:
 

Funding mechanisms include:

  • Therapeutic Development: initial exploration of innovative and potentially groundbreaking clinical interventions in the field of autism.
  • Evidence-Based Development: small-scale investigations that scientifically evaluate therapeutic interventions utilizing placebo- controlled and blinded-study design.
  • Research Support: ancillary expertise for research design, data mining, data analysis, and manuscript preparation.
  • Clinical Fellowships: supporting post-doctoral training for clinicians interested in utilizing a comprehensive biomedical approach for treating children with autism.

DEADLINE TO APPLY:

Applications for grants are due December 15, 2007, with awards announced in January 2008. To learn more about the Autism Collaboration's Research Initiative go to: www.autism.org. 

Don't Sell the Farm
By Jane Johnson, Production Editor 
 

JJohnsonMy children still go to our "mainstream" pediatrician because she can say what I now regard as golden words from a doctor: "I don't know." Seven years ago, when I first spoke to her about biomedical treatment for autism, she didn't tell me I was wrong, crazy, or stupid, and while she didn't provide the specific help I longed for, she wasn't a hindrance either.


My adult life had been spent within The Box.  By nature I'm a conservative person, and I'd never doubted conventional Western medicine--but I felt forced to make a painful departure from my unquestioning faith in it in 2000, when mainstream physicians weren't able to help me to help my child.


Biomedicine (comprising medicine, biochemistry, cell biology, and other biosciences) lays the foundation of all medical application, diagnosis, and treatment, so biomedical treatment can hardly be called "alternative." Nonetheless, physicians are in general lagging behind the surge of new information about autism treatment based on biomedical fact--many even still regard it as a psychiatric disorder, perhaps because it's still anachronistically included in the DSM (the 'bible' of mental health disorders)--so I had to start my own search for answers. I began going to Defeat Autism Now! conferences, and--blessedly--found doctors who could help my child. 

Being cast adrift from the mainstream makes it imperative that parents do research.  The science of autism treatment has come a very long way in the last ten years, but it's still feeling its way along.  It can take years of study to compile data to support new treatments.  While we wait for more pieces of the puzzle to emerge, I worry that too many individual treatment decisions are based on one or another amazing anecdotal story.  The autism spectrum is extremely complex, and a treatment that brings miraculous results for one child might be useless or even detrimental for another. Few treatments are helpful for more than 50% of children, and there's no way to predict which will work for a given child.  (For example, I know my son is a poor methylator; I know DMG or TMG and NAC should help correct the defects in his methylation pathway--yet both treatments make him feel ghastly.)
 
No one treatment works for all children.  Before investing in expensive new treatments, remember there's no guarantee any treatment will be right for your child; don't sell the farm or take out that second mortgage until supportive scientific studies have been published.  (And even then, remember it's a gamble, and that your child might not be on of the responders to that treatment.)
 
We can learn from the past.  Remember secretin?  It was labeled a "cure" after it brought about extraordinary improvement in just one child. It pains me to think how excited parents must have been, rushing to their doctors, desperate to help their children, sure that secretin would do the trick. A few likely saw a miraculous response from it, some a definite improvement, and most probably saw no change in their child.  Some badly designed negative studies followed, and secretin was prematurely tossed on the scrap heap. In fact, my son is a secretin responder; not in terms of behavioral change per se, but the improvement in bowel function has been invaluable.

Methyl B12 has proved to be a very important part of treatment for many children, and was also initially, erroneously, touted by some as " the cure."  When we jump on the bandwagon too quickly or exaggerate results, it gives the within-the-box-thinkers an opportunity to dismiss us, and the treatment as quackery, even if it's proven helpful for some children.  Plus, we risk parents closing their minds to the rest of appropriate medical treatment if they don't see miraculous results after trying one thing.  As we all know, autism treatment is a marathon, not a sprint.  Persistence wins the day, and it's easier to be persistent if you haven't been led--or led yourself--to expect an instant miracle.

Our best defense against disappointment is information.  One excellent resource is PubMed, with articles culled from over 5,000 peer-reviewed medical journals.  PubMed is a free online search engine that accesses a database of abstracts (summaries) of hundreds of thousands of medical research papers. While most of them are a little over the heads of lay people like me, it's possible to gather some key pieces of information. ARI has an extremely useful database gathered from more than 25,500 parents since 1967: "Parent Ratings of Behavioral Effects of Biomedical Interventions". It's an ongoing collection of ratings by parents, of the interventions they've tried on their autistic children.
 
The Defeat Autism Now! list of doctors is a starting point for finding the right physician for your child, but it's important to remember that it's impossible for ARI to assess the clinicians on the list. (The list will be updated early next year.) Just because a doctor has attended a Defeat Autism Now! conference doesn't mean that he or she is good at treating autism, or the right person for your family. Make sure you choose a doctor who stays up-to-date, reading published research and networking with other doctors. Stay away from people with a one-size-fits-all approach, and run from anyone who wants to try a lot of things all at once.  Bear in mind that some doctors have inflated reputations.  Lastly, even if you have a fantastic doctor, you'll get the best results if you take the time to educate yourself and stay on top of the course of treatment--no one can care more than you do.
 
Until Science is in a position to point definitively to which treatments will work for which children, the burden of choice rests on parents, so we need to proceed with great care as well as courage, with head and heart working together.
 
Jane Johnson is the co-author of Dr. Bryan Jepson's book "Changing the Course of Autism."
Krigsman Lectures Drawing Sell-Out Crowds in the Pacific Northwest 
 
KrigsmanDr. Krigsman, Director of GI Services at Thoughtful House Center for Children, is offering lectures in Seattle and Portland Dec. 1-2 on the evaluation and treatment of gastrointestinal pathology common to children with autism spectrum disorders. The events have drawn hundreds of registrants and inquiries from physicians, professionals, and caregivers.
 
Read Dr. Krigsman's article in Medical Veritas, "Gastrointestinal Pathology in Autism; Description and Treatment."
 
Editor's Note: When word spread that the Seattle event was full with more than a week to go, parents graciously offered their seats to make room for specialists interested in attending. By Nov. 30, medical professionals, educators, and therapy providers from Oregon and Washington state accounted for more than 25 percent of the registrants for both events. ARI and its co-sponsors are grateful for this tremendous show of support from the parent community.
 
SEATTLE:
Saturday, Dec. 1 at 7:30 p.m. at the Experimental Education Unit on the University of Washington, South Campus, behind the UW Medical Center. A few seats are left for medical professionals including a p
rivate reception at 6:15 p.m.
Pre-register for Seattle
(medical professional seating available)
 
PORTLAND: 
Sunday, Dec. 2, 1:30 - 4 p.m. at the Northwest Autism Foundation Auditorium at 519 15th St., Oregon City, OR
Pre-register for Portland (Overflow seating provided)

COST: Suggested $20 donation

 
Congratulations to Dr. Stephen Shore

SshoreNonverbal until four, and diagnosed with "atypical development with strong autistic tendencies," Stephen Shore was regarded as "too sick" to be treated on an outpatient basis. He was recommended for institutionalization. Happily, his parents disagreed. With their persistence, and the help of teachers and other friends and professionals, Stephen has gained more ground from that original diagnosis than anyone might have thought possible.
 
Next month, Stephen will crown his great achievement with a new title: Doctor Stephen Shore.
 
Shore will receive his Ed.D. in Education from Boston University in January 2008; he completed his dissertation, titled Examining Five Promising Methodologies for Treating with Children with Autism Spectrum Disorders this year and successfully defended it in October. 
 
Dr. Shore's Abstract:
Through written survey and recorded interviews a snapshot in time was taken of how theorists of five promising approaches - Applied Behavioral Analysis, TEACCH, Daily Life Therapy, Miller Method, and DIR - think about children on the autism spectrum.  Some of the findings include agreement on the need for a better definition and sub-typing of autism spectrum disorders, on the need for treatment-based research for developing and maintaining best practice, that the diversity of needs of people on the autism spectrum requires a wide range of approaches, and that people with autism have many valuable strengths to contribute to society.  Other findings include extensive use of non-standardized assessments, along with judicious employment of standardized instruments.  Finally, all the theorists - some of whom have spent more than four decades helping children with autism - feel that the work they have done can be useful to youth with other challenges as well.
 
In addition to working with children and advocating for a better quality of life on the autism spectrum, Stephen presents and consults internationally on adult issues pertinent to education, relationships, employment, advocacy, and disclosure. In his book Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome, he talks about his love of music and learning as he takes us through the heartaches and triumphs of his life as an "Aspie." Dr. Shore has also written Ask and Tell: Self-Advocacy and Disclosure for People with Autism as well as the critically acclaimed Understanding Autism for Dummies

He serves on the board of the Autism Society of America, as board president of the Asperger's Association of New England, and on the Board of Directors for Unlocking Autism, the Autism Services Association of Massachusetts, MAAP Services, The College Internship Program, and the KEEN Foundation. Dr. Shore has recently become a member of the Interagency Autism Coordinating Committee, which meets semi-annually to help advise Federal governmental agencies on priorities for devoting funds related to autism.
 
See Dr. Shore at next Spring's Defeat Autism Now! Conference in Cherry Hill, NJ, where he will present information about options for adults with autism.
Letters: Million Dollar Puzzle Piece Update
A Message from Lynda Huggins
 
I wanted to give you an update on our Million Dollar Puzzle booth at the Louisiana State Autism Conference in Lake Charles this weekend.  This conference is held every other year; our local chapter hosted it in Monroe in 2005. 
 
Jim and I had arranged to have a free booth for the Autism Puzzle Pieces.  We had a very successful time at the conference.  Our table was set up next to the coffee and soft drinks, which brought a lot of traffic by our booth.  We displayed Dr. Rimland's portrait and information about his contributions, and placed donations in a large clear vase. 
 
As we sold puzzle pieces, we taped them up on the window behind us, which drew more attention.  We were also asking folks to take a packet of 50 back home, and sell them in their area.  There were about 325 people at the conference - parents, teachers, and therapists.  We sold 209 puzzle pieces and distributed 43 packets (that's another 2150 puzzle pieces out there)! 
lsac
Then I was quite surprised at the luncheon on Friday when the Louisiana State Autism Chapter presented me with a Life Achievement Award.  They gave me a beautiful engraved acrylic plaque.  I am the 5th person to be so honored over the years.  They called me up on stage to say a few words.  It didn't hurt our sales a bit that I got to talk about the Million Dollar Puzzle that we are building for ARI!  Sales really picked up after lunch!
 
Everyone will donate a dollar for a good cause. The puzzle pieces sell themselves when displayed where there is lots of "people-traffic"!
 
For more information, or to request puzzle pieces to sell, e-mail us at:
 
Hugs to all,
Jim and Lynda Huggins
 
This email was sent to autismresearchinstitute@gmail.com, by autismresearchinstitute@gmail.com
Autism Research Institute | 4182 Adams Ave | San Diego | CA | 92116