Funding Research That Makes A Difference
ARI depends on generous support from the community to fund research for treatments that make a difference for individuals living with autism today. Members of the autism community have initiated several fundraising campaigns in 2007 to support ARI's goal to Defeat Autism Now! Help fund research that makes a difference.
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:
Buy Autism Awareness Calendars
Walkers & Virtual Walkers Wanted
Be Virtual WalkerIf you can't be there in person, you can still help out as a Virtual Walker!
Virtual Walkers are eligible for prizes and a T-shirt for raising $50 or more. Walk at a spot that's convenient for you and mail in your donations.
2008 calendars- 100% of proceeds fund ARI's research. Sponsored by Ezzz Night Pajamas.
National Autism Association Conference in Atlanta Nov. 8-11
Jenny McCarthy to appear Nov. 9
The National Autism Association is pleased to present its national conference in Atlanta, Georgia, Nov. 8 -11. Jenny McCarthy has agreed to visit the Southeast as a special guest speaker on Friday, November 9th at 4pm. Don't miss this inspiring actress and best-selling author as she discusses her journey with her son through his autism diagnosis, biomedical treatment, and ongoing recovery.
Attention Police, Fire and Rescue Personnel:
NAA is offering free registration to all first responders for two very important workshops. For Information:
SAVE THE DATE!
Don't miss the next Defeat Autism Now! conference, set for Cherry Hill, New Jersey - April 4-6, 2008.
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 and 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 the countless children and families facing autism every day.
Proceeds from the bricks will support The RIMLAND Center and the Autism Recovery Research Fund (a collaboration of non-profit organizations working together to raise and fund treatment-based research).
Open House at the New Rimland CenterPlease join us for the grand opening of The RIMLAND Center on Saturday and Sunday, November 3 - 4, 2007. Tour the facility, meet staff members, and enjoy presentations...Read More
'VIA' Provides Assistance to Families Seeking Effective Treatments
Last month we announced the launch of VIA - a 501(c)3 non-profit organization that funds various projects with a focus on making biomedical treatments more accessible to families of children suffering from autism. VIA has developed a Family Assistance Program, which offers financial assistance for biomedical treatments for qualifying families.
As a new non-profit organization, VIA has just begun their fundraising efforts. To help raise much needed funds for families, VIA has developed several sponsorship programs for corporations, celebrities, professional musicians, and professional athletes and will host various fundraisers throughout the upcoming year. Read more on VIA's Web site
|Calling All Active Network 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: firstname.lastname@example.org.
ARI strongly believes every family living with autism should have access to the information and data we offer. Translators are needed to offer ARI's data and resources to families.
Please send an e-mail to: email@example.com.
and list languages for which you could provide assistance.
If you are skilled in translating Turkish please contact us as soon as possible - we have an immediate need for assistance.
About the ARI International
This newsletter 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: firstname.lastname@example.org
Additional Assistance:ARI offers a toll-free resource line with information, contacts, and access to resources available through the Autism Research Institute.
See our Web site:
From the Director: What a Wonderful Conference!
This month's Defeat Autism Now! Fall 2007 conference was one of the best ever. With more than 1,100 attendees, the conference was filled with highly informative presentations and memorable highlights. Our A/V staff hopes to upload videos to autism.com in a month or two. Bestselling author, TV personality, and Talk About Curing Autism (TACA) Spokesperson Jenny McCarthy gave a heartfelt, exciting presentation. She also met with representatives from many of the non-profit organizations that are working closely with ARI. (See www.autism.org.)
Jim Adams, Ph.D. shared the results of the DMSA - Autism Treatment Study he conducted at Arizona State University. He reported DMSA was found to clearly increase the excretion of some metals and resulted in some improvements in behavior. Watch for Dr. Adams' presentation on the ARI website in November.
Other Conference highlights:
- A Biomedical Software Demostration by Alex and Tyler Way: two brothers from Eugene, Oregon, demonstrated the six educational software games they've designed to teach many of the concepts of the Defeat Autism Now! approach, including diet, chelation, and methylation.
- An auction to benefit parent-driven research that kicked off on a high note with the sale of a painting by Mark Rimland that sold for $1,600.
- A new event on Sunday: Raise Your Voice - Politics and the Autism Research Agenda. I was honored to introduce the representatives from SafeMinds, Lyn Redwood, RN, MSN; A-CHAMP, John Gilmore; and National Autism Association (NAA), Wendy Fournier.
Our two-day think tank for researchers and clinicians, held prior to the conference, was also very productive.
ARI's staff and I greatly appreciate all of the very supportive letters, e-mails, and faxes. We wish all of you the best in the upcoming holiday season. It's just around the corner.
Steve Edelson, Ph.D.
Director, Autism Research Institute
ARI's New Biomedical Survey Analysis Tool Now Online
Use ARI's database to find possible treatments for your child
Since 1967, the Autism Research Institute (ARI) has distributed surveys to parents to determine which treatments are most beneficial, as well as most harmful, to individuals with autism. ARI recently developed an Internet program that allows parents to utilize our treatment database survey, the largest in the world, to help determine which treatments to consider trying (or possibly avoiding) for their children. In this program, a parent first rates how his/her child responded to 1-4 treatments in the past. The program then searches ARI's treatment database (more than 25,000 records), summarizing how children who responded to the same treatment(s) responded to other treatments.
For example: if a child responded well to melatonin, the program will provide a list of additional treatments that benefited children who also responded well to melatonin.
There is no charge to use this program. Read more: www.BiomedicalSurveyAnalysis.com
ASA Announces 'Call for Papers' for the July, 2008 National Conference
The Autism Society of America (ASA) is pleased to announce that the 2008 ASA National Conference is set for Orlando, Florida at the Gaylord Palms Resort & Convention Center, July 9-12.
They have now opened the 2008 Call for Papers.
ASA anticipates 2,000 attendees this year and more than 150 exhibitors, plus speakers from around the globe. In 2007, 14 national organizations met as part of the conference, which afforded many networking opportunities for speakers. ASA will also offer continuing education credits for professionals.
Send your SubmissionsIf you would like to submit a paper for consideration, please visit www.autism-society.org/conference. If you have any questions, please write to email@example.com.
|IOM 'Autism and the Environment' Workshop Proceedings Free Download Now Available|
A free, pre-publication copy of the Institute of Medicine's "Autism and the Environment: Challenges and Opportunities for Research" workshop proceedings is now available online. In addition to the transcripts, the IOM included in the Appendix the many critical research suggestions that arose during the proceedings.
The workshop was a landmark event, placing treatment-focused study goals on our government's research agenda, and gaining acknowledgement of the role environmental toxins play in the development of autism.
The final hard copy publication will be available for purchase in December or January. You can read the proceedings online or download a free copy (a brief registration is required to download the file in .pdf format).
The Jenny McCarthy Effect
E-mailboxes Overflow Every Time Evan's Mom Speaks Out - and That's a Beautiful Thing
She could have settled into a comfortable private life, cushioned from many of the pains of autism by the grace of her son's recovery. Many of us would have done that in her shoes--no one could have blamed her.
But Evan's mom, actress, bestselling author, and TACA Spokesperson Jenny McCarthy, didn't go there. In the face of open criticism - and in some notable cases, overt hostility in the press - she accepted the heavy burden of spreading the word that autism is treatable.
Humbly manning her booth at the Defeat Autism Now! Conference in Anaheim this month, she shared her hope with other parents (photo, right), met adults with autism, and cuddled with her lovely son, Evan.
Autism is a great leveler. A beautiful face and perfect figure don't provide protection from this disease. And, as anyone who joined us in Anaheim can attest: Jenny really is one of us, another mom on the warpath against autism.
Jenny Takes the Stage
At the Saturday afternoon Parent Session of the Defeat Autism Now! Conference, TACA President Lisa Ackerman (photo, right) took the stage to tell the story of Jenny's admission to the autism community. Like most of us, Ms. McCarthy slunk in terrified and grief-stricken, but she was lucky enough to find other parents on the biomedical path early, exponentially speeding up her child's access to effective treatment.
Jenny responded to Lisa's introduction by sharing her very personal account of both the warmth and hostility she met on her recent media tour. Who could resist the perspective of a fly-on-the-wall concerning the backstage shenanigans of the national talk show circuit? Jenny demystified the process, and made us feel - if only for a moment - empowered.
Few will forget the moment when ARI founder Bernard Rimland's son Mark presented Jenny with his painting, "Puzzled Angel," before a cheering crowd. She thanked him with a kiss (photo, right) - the admiration was clearly mutual.
In the 40 days since her book Louder Than Words, A Mother's Journey In Healing Autism was released, Jenny's added her voice to the chorus of parents and clinicians around the world devoted to treating autism. Her message humanizes the effective approaches to autism offered in several books released earlier this year, notably Bryan Jepson's Changing the Course of Autism and Ken Bock's Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies. As a result, our phones ring off the hook, autism websites log record hits, e-mailboxes are jammed with inquiries, and free webcasts meet unprecedented demands.
And that is the best news in the world.
Jenny Vows: "I'm Not Done"
For those who were not able to meet her in person at the conference, more opportunities are on the horizon. Jenny has agreed to speak next month in Atlanta at the National Autism Association Conference, Nov. 9.
Watch for details about more events in 2008.
|ARI Teams with Other Organizations to Bring Arthur Krigsman to the Pacific Northwest
Dr. Arthur Krigsman of Thoughtful House Center for Children is visiting the Pacific Northwest in early December, offering lectures in Seattle and Portland for physicians, professionals, and caregivers on the evaluation and treatment of gastrointestinal pathology common to children with autism spectrum disorders.
SEATTLE: Saturday, Dec. 1 at the Experimental Education Unit on the University of Washington south campus behind the UW Medical Center:
- Private reception for physicians at 6:15 p.m.
- Lecture for physicians, professionals, and caregivers from 7:30 to 9:30 p.m.
PORTLAND: Sunday, Dec. 2, 1:30 - 4 p.m. at the Northwest Autism Foundation Auditorium at 519 15th St., Oregon City, OR
COST: Suggested $20 donation
|From the Editor: In Defense of Biomedical
By Contributing Editor Kendra Pettengill, Former President of FEAT of Oregon
The biomedical treatment approach to autism has received a lot of recent attention in the media. Despite encouraging reports, we continue to hear from the naysayers - the CDC, pediatricians, and medical organizations - who claim there is inadequate proof that these "alternative" approaches work. Their message is clear: parents should wait for the lengthy scientific studies that prove or disprove any given therapy.
But children with autism deserve medical treatment, and families cannot wait for the mainstream to catch up. So, many of us set out on our own, often finding that our children improve. And we tell each other these stories, and there is great celebration.
So why hasn't the rest of the world caught on yet?
First, the critical studies just aren't being done. If so-called experts are asking parents to wait, then they should at least begin conducting the studies.
Second, we must carefully examine the studies that are proposed or underway, and whether the protocols are in line with the Defeat Autism Now! approach. Many in the autism community remember the secretin studies that were compromised by inadequate trials, resulting in what could be interpreted as a negative finding. Parents and clinicians using secretin (a peptide hormone) with positive results for their children were dumbfounded by the botched protocol of the studies, and the consequent wholesale dismissal of the treatment. Despite the study's misinterpretation, many using secretin continued, but the biased conclusions meant many parents would never realize secretin is a possible treatment for their children.
Our Children Deserve to be Treated
Since Dr. Kanner first identified twelve children with autism, mainstream medicine has acknowledged frequent co-morbid medical conditions. But too often we hear parents say, "If a typical child had the symptoms my child has, he would be run through the wringer of diagnostic tests to find out why he is in such severe pain all the time, suffering from severe gastrointestinal symptoms, explosive diarrhea, chronic constipation, hard and distended abdomen, severe bowel impaction accompanied by explosive diarrhea, etc., etc." So why, when it comes to autism, do mainstream caregivers too often dismiss untreated the physical manifestations of the disease as "just the autism," tragically leaving children with poor or non-existent verbal skills to suffer?
Some parents are given the message that their children don't warrant testing and adequate treatment because they're unable to ask for it, or accurately report its effect. The tacit suggestion is that trying to help such a child could be a big "waste." That kind of inhumane rhetoric is the basis for this parent-driven movement - just as the ridiculous "refrigerator mother" theory that ignited the fire for Bernie Rimland half a century ago.
Parents Are the Engine that Drives this Movement
Human suffering is a relentless taskmaster, and parents coping with children in pain want to know what's being done today for individuals living with autism, not what genetic testing is planned for three years from now. Humane and compassionate medical care for ill children should not have to be defended at all. Parent-led initiatives are taking hold in more states every year, and there is growing awareness that many individuals with autism are improving (and even recovering) with a biomedical approach. A growing number of intelligent clinicians are getting a handle on this issue, and noticing several simple truths about our kids:
In the mainstream autism world, these observations are often disregarded, but they shouldn't be. Individuals without autism are treated for these conditions, with insurance routinely paying the bills. Our children should be no different. If there's medical evidence, it isn't "anecdotal." The detractors who dismiss all biomedical approaches as anecdotally-based refuse to consider the evidence. They are tossing diagnosable conditions in the heap with magnets and crystals, demonstrating a lack of careful deliberation that is not in the best interest of our kids, or of proper research.
- Many suffer severe, painful gastrointestinal issues that warrant treatment.
- Many have diagnosable immune disorders.
- Many suffer treatable chronic infections - ears, bladders, skin, etc.
- Many have treatable nutritional deficiencies and metabolic disorders.
- Their test results for metal toxicity are often extremely high.
Desperation, the Springboard to Informed Help
Some think parents are made witless by desperation, continually duped by charlatans promising miracle cures. They accuse treatment providers of "preying" on grief-stricken parents. Somehow these people fail to notice that those seeking effective treatments are typically intelligent and often highly educated parents, who were forced to do their own research after watching their child suffer neglect and mistreatment by standard allopathic physicians. When parents apply what they've learned, good results are often ignored.
Until mainstream medicine quits shutting out families, and stops refusing to treat children for severe medical symptoms and obvious distress, the parents of children with autism will continue to search for clinicians who will.
Parents are tenacious. This underestimated group sifts through the many forms of information available online, at parent support groups, in libraries, at parent-founded non-profits, and from compassionate, informed physicians. The federal agencies seem not to comprehend that their own shortcomings have necessitated that direction, leadership, and action must come from parents themselves, and that's exactly what's happening.
If it were not for parents, there would be no research agenda, no non-profits, no support agencies, no independent autism research. If it were not for parents, schools would not be providing a fair and appropriate education for these children. If it were not for parents, the vaccine schedule of this nation would continue to increase unchecked, and would still contain neurotoxins such as thimerosal (please note that many still contain aluminum). If it were not for parents demanding treatment for their children, we wouldn't have increasing numbers of providers offering effective behavioral treatments. Without parents, there would be no Defeat Autism Now!
Once parents are forced to find their own answers, to become medically and scientifically educated, to find and fund their child's treatments while denied insurance coverage, to organize and drive the political agenda for their child's sake as well as that of numbers of unknown children, they can't be expected to just go home and bake cookies or return to their office desks, trusting these same providers and agencies to now somehow suddenly do the right thing and fill the longtime voids. Inaction let the lions out of the cage, and empty promises, half-hearted efforts, and lame studies are not about to get the lions to return quietly.
The Elephant in the Living Room
I submit that the real issue with 'alternative' biomedical treatments for autism is "vaccine-induced autism," a legal and political hot potato. Oddly, detractors seem significantly unbothered by the thousands of parents who report great success with a gluten-free/casein-free diet. And you don't hear those same detractors screaming about parents trying RDI or Floortime, therapeutic interventions yet to be scientifically studied that have shown anecdotal improvements for many children with autism.
Do we need to be protected from these treatments as well? Aren't these parents also being victimized by "charlatans"? Why come down so hard on some promising if unproved treatments, while blandly accepting others?
National medical organizations, as well as federal agencies tasked with oversight, not only refuse to recognize effective biomedical treatments, they refuse to ask for or conduct the studies that would prove or disprove them. Genetic studies are a safe diversion from the work of sifting through charts to identify testable patterns in the data on biomedical treatments, possibly uncovering inconvenient truths.
These groups attempt to outlaw specific treatments and in doing so hurt the families who benefit from them. They offer us all a glimpse at the ugly atmosphere of self-preservation that prevents expanded research in this field. They will always pose as the protectors of innocent children who they say are being experimented on with "dangerous and unproven" therapies. But critical thinkers will see the hypocrisy of condemning safe treatments like diets and supplements, meanwhile prescribing psychotropic drugs that were never adequately tested on children and that are known to have high risks and devastating side affects even in the neurotypical population.
Parent advocates will continue to face persecution and many will arrive at the realization that it would be easier to give up and accept the "no known cause, no cure" diagnosis. Depleted by the fight, many will drop by the wayside, unable to defend their position or their child.
It is in fact the federal agencies and medical organizations that should be defending their positions, not the parents who are left to wonder why their loving devotion to their child is dismissed as desperate and foolish.
Biomedicine is the application of biology and physiology to clinical medicine-what's "alternative" about that? There is no need to defend biomedical treatments; the results are already speaking for themselves, and the chorus will only grow louder.