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June 2008

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In This Issue
New Adverse Effects of Drugs Index
Age of Autism Covers the Green Our Vaccines Rally
Autism Slides now in Spanish
Join the Million Dollar Puzzle Piece Campaign
Defeat Autism Now! at ASA
Mark Rimland Inspires Title Track on New Album
Wyoming Team Launches Rural Outreach
Parent Perspective: In Defense of ABA
 
Defeat Autism Now
Fall 2008 Defeat Autism Now! Conference
Oct. 23-27
San Diego, CA
-------------------
CLINICIAN SEMINARS
July 9, Orlando, FL
 
Oct. 27, San Diego, CA

Register

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Taking Defeat Autism Now! Home
Last April, we premiered a trial version of the 'demo room,' in which parents were given practical suggestions and hands-on experience with procedures that included pill swallowing, oral syringes, and injections. We plan to sponsor a similar demo room at our Fall Conference in San Diego. We'd like your input as we build our curriculum for this fall's event.
Take our quick survey to let us know what topics and components of hands-on training are most critical to caregivers.

Survey

Adverse Effects - Adderall to Zoloft
New index on autism.com
 
Not all treatments are created equal. Most commonly prescribed drugs have side effects ranging from minor to severe to potentially fatal. 
 
In order to inform parents of the efficacy of various treatments for children with Autism Spectrum Disorder (ASD), ARI has started an online index of commonly prescribed drugs, with links to scientific documents and summaries of possible adverse effects. 
  
See Adverse Reactions Index 
ARI proudly co-sponsors Age of Autism
green our vaccines
 
"We'll follow the truth wherever it leads, and we hope you'll come along with us and, if you can manage it, donate to The Age of Autism and help us pursue this story. Fasten your seat belts - it's going to be a bumpy ride."
- Dan Olmsted, Editor, Age of Autism
 
Submissions
Age of Autism welcomes relevant submissions that are appropriate for its readers.
ARI Supports Advocacy Nationwide

The Autism Research Institute (ARI) applauds caregivers and advocates worldwide for their commitment to secure appropriate, individualized medical and educational intervention for people living with autism spectrum disorders (ASDs).
 
"Many individuals with autism suffer from apparently related medical conditions; these conditions are often ignored, and so are left untreated by the medical community. These children can improve significantly, and in some cases recover, if their medical needs are met," said ARI Director, Stephen M. Edelson, Ph.D.
Read More (.pdf)
Autism 101 Slides - Now in Spanish
 
For the past year, ARI has offered an Autism Overview Presentation (Powerpoint) on autism.com. This presentation is free to download, and is adapted from a presentation by James B. Adams, Ph.D.
 
This month, an abridged version in Spanish was added to the Web site.
puzzle pieces
Help ARI and Create A Story of Hope
The Million Dollar Puzzle is an initiative to fund research through the Autism Research Institute, and keep Dr. Rimland's visionary work alive. We are solving the puzzle of autism by linking individuals, villages, towns, cities, states and countries with Puzzle Pieces.
 
Getting Started
Contact us and one of  our all-volunteer committee members will send you packets of 50 and give you the return information as well as a poster to display with the puzzle pieces, and a letter to present to business owners. Our goal: "Let's put these puzzle pieces across the entire U.S. and support the research we all want and need." 
 
Share your Success Please tell your success story about selling Puzzle Pieces, to inspire others to help us in our quest to fund research that makes a difference for individuals living with autism today. 
Links Wanted: Submit your Story
Autism.com is linking to caregiver stories of treatment and recovery. 
 
Please send links to:
- Videos (youTube, short films, etc.) 
-Videos and published news stories.
 
Volunteers Needed for Northwest Autism Study 

Who: Gene Stubbs, MD PC, Independent Contractor, and Kathy Henley, p. 503-351-9255 (Kathy) for more information.  
 
What: Study participation opportunity for two studies for families in the Portland, OR area who have at least one child with autism. Seeking 40 families per study.
 
1) Study of the use of probiotics, a food supplement, to prevent recurrence of autism in newborn siblings.   
 
2) Study of the use of Vitamin D to Prevent Autism in Newborn Siblings.  
 
Where:
Portland, Oregon and Vancouver, Washington metro areas
 
When: Starting immediately - June 1, 2008  
 
Why: We want to know whether these treatments will prevent the onset of autism newborn siblings.   
Our Partners
Autism Society of America 
 
Generation Rescue
 
Medigenesis: A New Beginning in Medicine
 
NAA
 
safeminds
 
Schaefer Autism Report
 
TACA
 
Treating Autism
 
Unlocking Autism
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 submit it.
 
Contributing Editor:
Jane Johnson
 
Technical Support:
Denise Fulton
 
Additional Assistance:
ARI offers a toll-free line with information, contacts, and access to resources available through the Autism Research Institute. Call: 866.366.3361  
Join Our Mailing List
Director's Note:
 
Steve Edelson 2008With summer quickly approaching, our work at ARI is heating up. We are working on a number of exciting new projects including www.AutismPodcast.com. Stay tuned.
 
Last month's Autism One conference in Chicago was a huge hit. Our founder Dr. Rimland would have been ecstatic to hear so many parents share how well their children are responding to biomedical and behavioral interventions.  As you may know, Dr. Rimland helped pioneer both types of interventions.
 
In May, ARI and the Autism Society of America (ASA) co-sponsored a Gastrointestinal Consensus Conference in Cambridge, MA. Researchers from around the world reviewed the scientific literature on gastrointestinal problems associated with autism, and they are planning to publish a summary and conclusion in the (hopefully) near future.
 
Coming up: An all-day Clinician Seminar is set for July 9th at the Autism Society of America's National Conference in Orlando. Then, following the keynote address of Dr. Robert Hendren from the MIND Institute on July 10th, ASA offers a one-day Defeat Autism Now! track for parents. 
 
And finally, I would like to commend Generation Rescue for selecting a terrific person, Stan Kurtz, to be their new executive director.
 
Regards,
Steve Edelson, Ph.D.
Director, Autism Research Institute
Defeat Autism Now! Events Slated for ASA's Annual Conference in Orlando
Clinician Seminar July 9th, Parent Track July 10th 
 
The Autism Society of America has graciously invited ARI to present a Defeat Autism Now! Clinician Seminar at the annual conference at the Gaylord Palms in Orlando this July.
 
oharaClinician Seminar July 9th
Dr. Nancy O'Hara has coordinated a
Clinician Seminar for Wednesday, July 9th. She will be joined by Dr. Dan Rossignol and Dr. Bryan Jepson as they explain the basics behind medical treatment for autism. (Parents: this year more licensed healthcare professionals than ever before have attended our Clinician Seminars. Many come because parents ask them to learn more about the treatment of autism. Please help us continue this trend.) You can print the pamphlet online (.pdf) or request clinician pamphlets
 
The pamphlet helps to remind clinicians that we offer continuing medical education credits (CMEs). At the seminar we will review scientific data that form the foundation for effective medical treatments, focusing on metabolic, gastrointestinal, immunologic and neurological function. 
 
We will discuss common features of the medical history, physical exam, and laboratory findings often associated with autism that are amenable to medical intervention. Clinician Seminar Registration
 
Parent Track July 10th
On Thursday, July 10th, there will be a Defeat Autism Now! track for parents:

Mind the gut: The crucial role of intestinal health
Nancy O'Hara, MD

The GI tract does much more than process food; it is key in the production of neurotransmitters, and is central to immune response. Gut inflammation, dysbiosis, and digestive enzyme abnormalities are common in children with autism spectrum disorders.  Dr. O'Hara will explain the surprising roles of the GI tract, and how restoration of good intestinal function not only addresses GI symptoms, but also in many cases has a positive impact on so-called autistic behaviors.  
 
rossignolDetoxification, inflammation, and oxidative stress in autism: testing and treatment
Dan Rossignol, MD
Multiple studies demonstrate that some children with autism carry increased burdens of environmental contaminants, such as heavy metals, pesticides, and chemicals.  Many of these children also have inflammation in the brain, and increased levels of oxidative stress.  All of these problems can impair function.  How you can test for these problems and individualize treatments for your child will be discussed.
 
jepsonUnderstanding the role of medical interventions in autism
Bryan Jepson, MD

Dr. Jepson will present the elements critical to understanding the medical nature of autism.  He will discuss: how the history of the disease has affected mainstream medical thinking; the autism epidemic and how it implicates the environment as a cause; the nature of the biochemical interactions among the major organ systems, and how they relate to autism symptoms.  He will also give a general overview of medical treatments and review the scientific rationales for various treatment options.  
 
We hope to see you there!
Purchase New CD to Support Research that Makes A Difference
A portion of the proceeds from Gregory Page's new album will go to ARI
 
pageGregory Page - a singer/songwriter residing in the Kensington area of San Diego (home to ARI)  - has adopted autism as a cause that he wishes to support. His interest in supporting research that makes a difference was sparked by his friendship with his neighbor, Mark Rimland. In 2006, Gregory featured one of Mark's paintings on the cover of his album Daydreaming at Night
 
The title track of the new CD "All Make Believe" was inspired by Mark (the lyrics even include a reference to the Secret Night World of Cats, a book that Mark illustrated). The CD includes 13 tracks of delightful songs with appeal for both adults and children. 
 
A portion of the proceeds from sales of the CD will be donated to ARI to support research to validate and discover new treatments for autism.
 
 
Wyoming Duo Launches 'Autism is Treatable' Campaign in the Equality State
 
"We held our first ARI presentation at a local Special Education facility on May 8th. We had a terrific turnout - thanks so much for the opportunity. This is very empowering and I love knowing that we are making a difference. We've been invited to present at the WyPEC (Wyoming Para-Educator Conference) this fall, and at the State Department of Health's Conference for families and professionals in August. Additionally, the Wyoming State Task Force for Autism Intervention has invited us to serve on the Parent Advisory Panel. Go ARI!"   
  
About the Wyoming team:
jepsonJudi Moore: "My name is Judi Moore and I am so excited to become a Rural Outreach Consultant for ARI. My passion is to inspire and educate as many people as possible so that we can work towards recovering as many children as possible. I have been married for 19 years and have two children, Kala age 17 and Cameron age 6. I am involved with our local autism group called the Casper Autism Society and have been Vice President for about a year and a half. Cameron was diagnosed with high-functioning autism when he was 3-years-old. It was then that I decided to end my career as a Well Planner in the Oil & Gas industry to devote my time to helping him recover. We are currently treating him with a variety of therapies including OT, PT, Speech, Social Skills, and Sensory Integration Therapy. We have him on a special diet that is GF/CF as well as soy-, egg-, and peanut-free, and a variety of supplements recommended by his clinician, using a Defeat Autism Now! approach. He has made amazing improvements - he is currently in Kindergarten in a regular classroom and doing great! He hasn't yet fully recovered, but he is well on his way." 
 
jepsonChristy Garner lives in Casper, Wyoming and is excited about being a Rural Outreach Coordinator for ARI in Wyoming. She looks forward to meeting the many individuals, families, and professionals touched by autism.
 
"In such a sparsely populated state, there is not much in the way of resources for those facing autism. With this program, hopefully the message, 'Autism is Treatable' will not only be shared, but realized by many in Wyoming," Garner said.
 
Christy has two beautiful girls: Rylie is a typically functioning 8-year-old who loves Hip-Hop Dance, Soccer and Oreo Cookies. Josie is five years old and was diagnosed with autism at the age of 22 months. She is on the road to recovery, albeit very slow. She too loves to dance, she enjoys being near her family and is discovering how to have fun outdoors.
 
Christy and her husband of 16 years, Jeff, have been active members of their local autism support group for several years. Christy became the President and has worked hard to increase awareness in her small community as well as raise the level of hope for other families dealing with autism. Their affected daughter is doing well in the care of a clinician using a Defeat Autism Now! approach in Colorado Springs. As she transitions from their local child development center's preschool into the public education setting, they are hopeful that good services will continue and that Josie will soon make enough progress to be indistinguishable from her peers. With the continuation of Speech, Occupational Therapy, Physical Therapy, and the implementation of ABA, as well as the biomedical protocol, there is much hope for a bright future.

Next Month: ARI Rural Outreach Launches in Oklahoma
Parent Perspective: In Defense of ABA
Editorial By Kendra Pettengill 
K&K 
Applied Behavior Analysis (ABA) is an intensive educational therapy used for children with autism, though its method is applied outside the autism world as well.  It is imperative that parents understand what ABA is, why it is sometimes controversial, and why it can be so effective when done well by caring professionals. When seeking treatment for your child, ABA should be neither dismissed nor taken on lightly. Done right, it can be life-changing for children and their families. Done poorly or improperly, it can create more problems, with minimal long-term benefit.
 
The Origins of ABA
ABA is based on B.F. Skinner's theories of operant behaviors, and because the experimental work demonstrating the theory was originally tested or proven on animals, the first controversy arises from that.

I have heard people compare ABA to training a dog or a pigeon; they say their child is neither, so they will have none of that. It is unfortunate that this misconception convinces some parents and professionals to dismiss ABA out-of-hand during the critical early intervention period. As with many issues in autism (from vaccines, to diets, to biomedical interventions) it's wise to take a close look before discarding any treatment.
 
The basic premise of ABA is simple: that rewarding or reinforcing good behaviors will bring about and encourage the repetition of those same behaviors, and that punishment, negative consequences, or simply a lack of attention for bad behaviors, will cause them to fade away. Every child wants attention, praise, rewards, gold stars -- whatever the positive reinforcement might be -- and autistic children are no different, though what is positive reinforcement for our children might be unique.
 
Another controversy stems from the first trials and scientific studies of ABA done with autistic children. In the 1960s Ivar Lovaas, a UCLA psychology professor, pioneered its use in teaching autistic children. 
 
During the experiment trials, in addition to using the rewarding consequences, Lovaas also used negative consequences, referred to as "aversives." While those days are long gone, the perception of the treatment is forever linked to this era.
 
I do not condone negative behavior toward any child, but I see Lovaas' very early work in the context of its time, rather than imposing today's standards. And, the results of the 1987 Lovaas study (conducted 1970-1984) were an astounding breakthrough at the time - shattering the prevailing belief that autism was untreatable. Compared to previous outcomes with other approaches showing 3-8% improvement, the Lovaas program showed dramatic improvement in 47% of subjects with observation by impartial and professional observers and objective measures, with significant improvements in the other students in the high intensity ABA therapy group, compared to much lower outcomes in the low intensity and typical special education groups. These effects and outcomes have been replicated and further described in the studies cited at the end of this article.
 
Sorting out the Choices
ABA has evolved through the years, and while professionals may adhere to a specific 'brand,' the key is to seek out those who are well versed in all aspects of ABA.  A good behavior analyst should be familiar enough with the science and analysis of behavior to be able to determine the specific needs of a student.  They may also pull from other sources such as "Floortime" or "RDI" and use what is effective in the context of good ABA theory and positive reinforcement.
 
The most important thing you will do as a parent is to find a qualified and experienced consultant.  Many groups across the nation such as FEAT (Families for Effective Autism Treatment) help to guide parents through the maze of "alphabet" treatments and providers. They may also strongly suggest you only hire consultants who are certified as either  BCBAs (Board Certified Behavior Analysts) or BCABAs (Board Certified Associate Behavior Analysts).  Board Certification specifies minimum education and training to provide ethical and effective ABA therapy. Just as with a licensed physician, certification is easy to check.
 
ABA Today
Today's ABA is forged from the experience of the growing epidemic of the last 20 years, which seems not to be slowing.  Better and more effective techniques, a greater flexibility in application, a growing number of service providers or consultants, and a friendlier ABA more acceptable to loving parents and families have resulted.  Yet, it is still as effective, if not more so.  I sometimes read the studies, detailing and pinning down the best time to give rewards, or how to phase them out.  Studies show the most effective ways to generalize learning into the child's environment, or the best methods to teach social skills to advanced or older children.  ABA has developed into a prestigious science, with its own renowned and respected experts, and a worthwhile field for young people to enter--a field that makes a difference in children's lives and our communities.
 
The Expense of ABA
I am a proponent of biomedical treatment, but I also believe that my daughter would not be where she is today without ABA.  For us, the powerful combination was key to our success and recovery.  I have met children who have recovered through ABA alone.  It is an intervention with science behind it, and thousands of experts, and tens of thousands of parents, can help you on the path.
 
To be successful, ABA necessarily disrupts your life - perhaps even more than biomedical treatment; it opens your home to others, and requires a high level of learning and participation from parents.  It is extremely complex, hard to master, and it is expensive.  For too many families, it is out of reach.  I know families that spend anywhere from $40,000 to $60,000 a year for professional ABA services.  I think it is a shame that every child with autism is not afforded exceptional quality ABA.  It would change each child's life, as well as the future of our nation, as we watch a generation of children age into adulthood.  The cost of not offering ABA to all autistic children will be far greater than the real costs today and in the future.
 
Then How Do I Get an ABA Program for My Child?
As a single working Mom, the cost of ABA seemed out of reach.  But one of the first organizations I reached out to and that reached back to me was FEAT of Oregon.  The support given me by parents on that list is priceless; they were some of the most knowledgeable parents I have met.  They know ABA, they know Special Education Law, they know activism, and they know compassion, as well as passion for the cause and for their children.  I took the knowledge gathered there and formed a plan. I found ABA to be extremely complex; for me it would have required too much study and time to master, and without formal study, what if I got it all wrong?
 
I finally found a consultant, and set up an initial consultation, thanks to a surprise financial gift from a brother.  Now I needed lay therapists to be trained, so I approached my very supportive family, and started giving presentations at local churches, asking for volunteers.  I was able to put together a pretty solid team and we started with an initial evaluation, training, and a program plan geared individually to the level of my child, her strengths and her deficits. 
 
I did the primary therapist duties of monitoring progress, removing mastered targets and adding new targets to the lists, tweaking the program between consultant visits, and scheduling the therapists.  I used two consultants over a five-year period, and both were understanding of my financial situation; we often had to delay consultation visits until I could afford the next one.  I sold my house, spent my retirement account, and received a scholarship from a philanthropic organization, but I never spent even $10,000.00 in any given year on ABA alone.  They were the hardest years of my life, but I would do it all again, and the results were worth far more.
 
Behavior Principles in Action
ABA is a natural part of who we are, like breathing air and gravity.  We see good and bad parents, good and bad bosses, good and bad teachers.  The good ones use some form of ABA, whether they are trained in ABA or not.  But what I also realized is that if done incorrectly or without a basic understanding of the principles of ABA, we well-meaning parents are often actually reinforcing negative behaviors or bringing on new ones.  It took an understanding of ABA for me to realize this and change my own behaviors.
 
What ABA can be!
I can speak for the many families I know that have used ABA effectively for their children and say that some have seen complete recovery, others have seen huge advances and some continually use ABA for severely autistic individuals to help them continue learning and acquiring skills.
 
Thanks to two amazing and loving professionals and lots of volunteers and family, my daughter made up almost three years of lost skills in one year, and loved every minute of it.  There was never an area of our life in which ABA did not offer solutions.  We addressed speech, vocabulary, behavior, eating issues, social skills, self-help skills, household duties or issues, reading, comprehension, math, perseverative behaviors, sensory issues, public outings, and more.
 
No one that ever watched any part of our ABA program ever believed it stemmed from any motive or practice other than pure love and compassion. We never experienced anything close to abuse. In fact, my daughter was delighted whenever one of these professionals walked through the door. ABA taught our entire family the perfect balance of accommodation to the autism, while expecting the highest level of advancement. 
 
Our consultants trained our public school personnel, and we're thankful we have a school that is open to this.  With the help of ABA, my daughter shed all special education assistance and aides by third grade, and is now independent in a mainstream classroom. I still use ABA techniques in how I discipline my daughter, how I offer encouragement, how I use rewards for good behavior and academic accomplishments, how I help and encourage homework every night, and how we build toward longer conversations, and continue to work on arising social issues.  I cannot imagine this journey without ABA and the tools it has given us.
 
I have witnessed the results of effective autism treatment, and any state legislator who could see my daughter's before and after evaluations would never believe the insurance lawyers who say autism is not treatable. Autism is treatable.
 
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For More Information, see:
 
Eldevik, Eikeseth, Jahr, & Smith (2006) Effects of Low-Intensity Behavioral Treatment for Children with Autism and Mental Retardation. J.Autism Dev. Discord.36(2):211-24
 
Eikeseth, S., Smith, T., Jahr, E., Eldevik, S. (2007). Outcome for Children with Autism who Began Intensive Behavioral Treatment Between Ages 4 and 7.
Behavior Modification, Vol. 31, No. 3, 264-278
DOI: 10.1177/0145445506291396
 
Remington, B., Hastings, R. P., Kovshoff, K. et al. A field effectiveness study of early intensive behavioural intervention: outcomes for children with autism and their parents after two years. American Journal on Mental Retardation. (In Press).
 
The Behavior Analyst Certification Board
http://bacb.com
 
Consumer Guidelines for Identifying, Selecting, and Evaluating Behavior Analysts Working with Individuals with Autism Spectrum Disorders. (2007). 
Autism Special Interest Group of the Association of Behavior Analysis.
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