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February 28, 2008
ARI logo
In This Issue
Clinician Proposes Center for Adults, Families in the Pacific Northwest
Dr. Rimland's Final Book Praised as a 'Must Read'
Centers for Adults with Disabilities Offer Support, Empowerment
Tailor Institute: Turning Potential Into Reality
Don't Miss the Parent Session April 5 at Defeat Autism Now!
Mom of an Adult with Autism Works to Solve $1 Million Puzzle
Defeat Autism Now
Spring Conference
Cherry Hill, NJ
April 3-7
 
  • register

    ----------------------
    2008 Events
    Clincians' Seminar at Autism One - May 22 Chicago, IL

    Clinician's Seminar at ASA National ConferenceJuly 9 -Orlando, FL

    Fall Defeat Autism Now! Confernce October 23-27 San Diego, CA

  • Clinician Proposes Center for Adults, Families in the Pacific Northwest
    Project seeks partners to offer support for adults and children with autism
     
    john greenA new treatment center offering comprehensive care - including
    biomedical treatments, educational and behavioral intervention, and residential-care support for adults - is proposed by John Green, MD, of Oregon City, OR.
     
    With nearly 10 years of experience using a Defeat Autism Now! approach, Green says he is exploring the possibilities of extending his work to help more families living with autism in the Pacific Northwest.
     
    A regular at Defeat Autism Now! think tanks and a popular conference speaker, Green responded to the national shortage of clinicians in 2007 by leading a pilot program to team experienced doctors with newly trained clinicians in the American Northwest through a series of conference calls; the mentor project was a success, with the group continuing to convene every 8-19 weeks by phone. 
     
    Dr. Green also lends his support in Italy every year to mentor clinicians using a Defeat Autism Now! approach in Europe.
     
    A Peaceful Spot
    Green has located a rural school building about 15 miles east of  metropolitan Portland and hopes it will prove to be an optimal location for the center. His next step is to find providers and partners to help his vision become a reality.
     
    The goal is two-fold: he hopes to bolster continued interest and collegial support for fellow Northwest clinicians while offering comprehensive support to families.
     
    Clinicians Helping Clinicians
    Green's vision is an ambitious undertaking - but not unprecedented. Defeat Autism Now! Medical Director Dr. Elizabeth Mumper launched her own comprehensive treatment facility, The RIMLAND Center, last fall in Lynchburg, Virginia to offer full-service support for families while teaching practical skills to fellow clinicians.
     
    Green says he hopes service- providers and members of the autism community will consider getting involved for the good of the entire Northwest autism community.
     
    To Learn More
    If you are interested in joining in to help, contact Dr. Green at:
     
    Science Behind GF/CF - Info For Caregivers
    Brochure explains urgency to 'Stop giving kids forbidden stuff!'

    tissue
    "This is what these foods do to my child's GI tract; this kind of tissue should be smooth and uniformly pink."
     
    All too often, teachers, relatives, and neighbors sneak forbidden foods to our kids. To provide parents with a tool to dissuade cheating, ARI created a brochure called "Why my Child is on a Special Diet."
     
    We'll be handing the brochures out at the Cherry Hill, NJ Spring Defeat Autism Now! Conference. 
     
    For those unable to attend the conference, we linked a printable version of the brochure from our homepage at Autism.com.
     
    Note: Although the brochure specifically mentions GF/CF, it should be useful for all diets because the point it makes is that children shouldn't be given any food without the explicit permission of a parent.
    medigenesis
    Families
    Invited to Enroll in Medigenesis
    Compare symptoms with thousands of others
     
    Medigenesis.com is a "library" where instead of old books you will find the anonymously shared experiences of children like yours. The children are similar to yours not only because of a diagnostic label, such as autism, PDD, asthma, or colitis, but with a likeness portrayed in a fully-remembered, detailed description that defines each child as an individual. You can easily find those who are most like your child, so that you can consider data that tells you what worked for closely-matched groups of children.
     
    Families are currently invited to join a free beta-trial courtesy of Medigenesis. Read More
     
    Updated Treatment Ratings at Autism.com
    The parents of children with autism represent a large reservoir of information on the benefits, as well as any adverse effects, of the large variety of drugs and other interventions that have been tried with their children. The Autism Research Institute has been collecting these ratings since 1967, from nearly 30,000 parents.
     
    Calling All Active Parent Leaders
    Join ARI's parent- leader network
     
    Are you an active parent-leader in your community, helping other families to implement the biomedical approach?
     
    We're convening a monthly conference call for ARI Network Parents. Join us to learn what's available, how to access the new resources, ask questions, offer suggestions and feedback, and connect with other Network Parents to pool ideas.
     
    To learn more,
    e-mail:
    denise@autism.com
    Our Partners
    Autism Society of America 
     
    Generation Rescue
     
    Medigenesis: A New Beginning in Medicine
     
    NAA
     
    safeminds
     
    Schaefer Autism Report
     
    TACA
     
    Treating Autism
     
    Unlocking Autism

    Events In the Community...

    Treating Autism (UK) Announces Introduction to Nutritional Interventions for Autism
    One-day seminar for parents and care-takers of children with autism spectrum disorders. Parents will share their 'Stories of Hope' - speakers include Paul Shattock, OBE and clinical nutritionist Jon Tommey.
     
    Contact: TreatingAutismUK@aol.com
    Learn More
     
    Autism One Announces: Recovery Rising
    Wednesday, May 21-Sunday, May 25 at the Westin O'Hare Hotel (Chicago area)
    Autism One 2008 features the Defeat Autism Now! Clinician Seminar, Thursday, May 22. 
    The Clinician Seminar is a project of the
    Autism Collaboration whose mission includes identifying and implementing the most innovative ideas to help our children get better, faster.
     
    ASA Announces its 2008 National Conference
    July 9-12, 2008, at the Gaylord Palms Resort and Convention Center in Orlando, Florida Registration is in online at: www.autism-society.org/conference

    ASA offers continuing education credits for:
    Behaviorists (BCBA credits) Hearing & Speech Professionals (ASHA credits)
    Medical Professionals (CME credits)
    Educators (Certificates of Attendance)

    Contact: 301.657.0881 ext 110
    or e-mail
    conference@autism-society.org
    Learn More 

    Visit our Web site:
     
    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 addressed, please submit it to us at:
    e-newsletter@autism.com
     
    Contributing Editors:
    Jane Johnson
     
    Technical Support:
    Denise Fulton
     
    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
    Join Our Mailing List
    Steve Edelson 2008I would like to thank everyone for their letters of support and encouragement. ARI's staff and I appreciate hearing from you. We continue to receive reports from parents and physicians on how well their children are responding to many of the interventions that are discussed on our websites, in our newsletters and at our conferences. 
     
    Last week I updated the results from our treatment survey.  Parents from around the world have answered questions about what treatments they gave to their children, and how well they responded.  I have analyzed the results for both autism, with over 26,000 responses, and Asperger Syndrome, with almost 1,300 responses.
     

    This issue of the e-newsletter is in honor of adults with autism; unfortunately, there are not enough services to help autistic adults today.  Given that t
    he epidemic began in the mid 1980s, these people are entering adulthood and are very much in need of adult services. (A wonderful book on this theme is just now available, Families of Adults With Autism: Stories and Advice for the Next Generation, edited by our Defeat Autism Now! Director Jane Johnson and with a foreword by me. It was a pet project of Dr. Rimland's, and you can find it on Amazon.com This is a growing concern within the autism community, and it is time we begin doing something rather than waiting until the autism community is in a full-blown crisis.
     
    On another note, the Spring Defeat Autism Now! Conference is 'right around the corner.'  If you are planning to attend the Cherry Hill, NJ event on April 4-6, I suggest you make your hotel and airplane reservations soon.

     
    Regards,
    Steve Edelson, Ph.D.
    Director, Autism Research Institute
    Parents and Siblings Share Real-Life Stories of Living with Autism 
     
    adults bookFamilies of Adults with Autism is a collection of real-life stories of people on the autism spectrum growing up, as told by their parents and siblings.

    The individual accounts explore the challenges that families of people with autism have faced, and the techniques they have used to improve the quality of their children's lives, from mega-doses of vitamins and dietary changes to intensive interaction. The contributors also relate how they have worked with their children or siblings to help them to function at their highest possible level, be it showing an awareness of their environment, holding down a full-time job in a local store, competing in the Special Olympics, or achieving international recognition as an artist.

    What makes the book especially interesting is that most of the subjects in the stories were born in the 1950s-the generation whose parents were told that they caused the disorder by cold parenting.  Faced with nearly non-existent services, these so-called "Refrigerator" parents rolled up their sleeves and set to work to find ways to blaze the trail for succeeding generations in the realm of adult issues such as living arrangements, employment, and recreation. The fact that sometimes the parents succeeded beyond expectation and sometimes the odds were simply too great makes it both a heart-warming and occasionally a heart-breaking read. 
     
    Order the book Families of Adults with Autism
     
    Now in Paperback
    snwcBy Helen Landalf. Illustrated by Mark Rimland. This beautifully illustrated and engaging fictional story tells the story of a young girl named Amanda, who begins to search for her missing cat, who has disappeared into the night. As Amanda searches her neighborhood and beyond to find her beloved friend, she discovers a secret night world where hundreds of cats abound. This wonderful book is a collaboration between the author, Helen Landalf, and the illustrator, Mark Rimland, who is the author's brother and an adult with autism spectrum disorder (ASD).
     
    Dr. Rimland's Final Book - Dyslogic Syndrome - Praised as a 'Must Read'
    Book garners a 'Starred Review' from Library Journal
     
    dyslogicNow on shelves is another brilliant offering from ARI's founder, Dr. Bernard Rimland: Dyslogic Syndrome: Why Millions of Kids Are "Hyper," Attention-Disordered, Learning Disabled, Depressed, Aggressive, Defiant, or Violent-and What We Can Do About It. Jessica Kingsley. Jan. 2008.
     
    Dyslogical children are commonly labeled as having one or more conditions that include Attention Deficit/Hyperactivity Disorder, Conduct Disorder, Bipolar Disorder and Oppositional Defiant Disorder. The number of children who could be described as dyslogical continues to rise sharply, and society has a tendency to lay the blame for this trend on poor parenting or bad schooling. In this ground-breaking book, Bernard Rimland argues that such 'conventional wisdom' is not just mistaken but dangerous. Drawing on the latest research, Rimland outlines the impact of biological factors on today's children, exposing them to the influences of toxins and dietary deficiencies. Dyslogic Syndrome is full of valuable advice on the safe, effective treatments that are available, and offers strategies for helping parents and professionals to do their best for the dyslogical child.
     
    "From the brilliantly inquisitive mind of one of the world's foremost research psychologists, Dr. Bernard Rimland, comes this straightforward, meticulously researched explanation of--and lucid plan of action for--dyslogic disorders. A must- read for parents, educators, physicians, politicians and legal practitioners."
    --Max Ricketts, author, The Great Anxiety Escape
    Centers for Adults with Disabilities Can Offer Support, Empowerment
     
    The autism epidemic, which Dr. Rimland presciently foresaw in 1999, is still raging full-force nine years later. Even with increased awareness of the frequent success of early intervention in minimizing the effects of ASD, the inescapable fact is that many of today's children with autism will become tomorrow's adults with autism.

    Mark booksigning
    As such, these adults will need support, guidance, and education from facilities such as St Madeleine Sophie's Center, an innovative school in El Cajon, CA.

    On its five-acre campus, St. Madeleine Sophie's Center helps over 270 adults with developmental disabilities, including cerebral palsy, epilepsy, and autism. The emphasis at SMSC is on the ability rather than the disability of the individual student.

    "We pride ourselves on finding the strengths of each student, and gear the services and programs appropriately," says Erich Foeckler, Associate Director of Development at St Madeleine's.
     
    The programs may include art therapy, social skills, standard education classes (such as math and reading), and vocational training, depending on the individual.
     
    All of the classes aim to empower the individual, and to make the adult student feel as comfortable as possible when confronted with new situations. For example, in one branch of their vocational training, St. Madeleine Sophie's Center has contracted with the City of El Cajon, and the SMSC students are now the exclusive "red curb painters" for the city.   "Many of the students prefer not to work alone," explains Foeckler. "So we have them paint the curbs in small groups -- they're earning money for their work, and they enjoy the social aspect as well."
     
    Another unique "fun/vocational" combination at SMSC is the art gallery.   "Sophie's Gallery" is a commercial art gallery run by the center, which makes artwork created by the students available for purchase by the public.
     
    Mark Rimland, son of ARI founder Dr. Bernard Rimland, is one of the talented artists at SMSC whose work is on sale at the gallery. Mark and the other artists not only derive a great deal of pride from having their work displayed and sold, but they receive a portion of the proceeds as well. 
     
    In addition to programs for the higher functioning adults with autism, SMSC also realizes they are going to have to accommodate increased numbers of lower functioning students on the spectrum as well. "We're constantly re-evaluating our programs and adapting," says Foeckler, who explained that because some of the adults with autism can be aggressive, the center is replacing some of the glass in certain rooms with plexiglas, and other upgrades.
     
    "We're also incorporating behavior modification into the autism program," adds Foeckler. "You have to stay ahead of the curve."
     
    As the children of the epidemic begin to mature in increasing numbers, centers like St. Madeleine Sophie's will be invaluable not only in helping the students and families in the San Diego area, but also as a template for thousands of other centers which will be springing up in cities around the country, and around the world.
     
    "We are here to serve those with autism and other disabilities, as long as they need us, and our best advice to similar centers would be to remain flexible and constantly be thinking of ways to improve services to those whom you serve," said Foeckler.
     
     For more information about SMSC, or to donate, please visit http://www.stmsc.org
    The Tailor Institute: Turning Potential Into Reality
    Institute helps adults reach their potential
     
    tailorFor many teens and adults with autism, the dream of independence becomes a nightmare. The social inadequacies, impaired communication skills and sensory issues that are hallmarks of autism often make acquiring and keeping a job nearly impossible. Surprisingly, approximately 10 percent of individuals with autism have "savant" skills, remarkable talents in specific, defined areas of cognitive function. 
     
    statlerThese skills often express themselves as giftedness in computer programming, art, mathematics, memory, music and other areas, yet most of these extraordinary people remain unemployed, in minimum-wage jobs, or on welfare.
     
    The Tailor Institute, located in Cape Girardeau, Missouri is a non-profit organization dedicated to improving the lives of people with high-functioning autism or Asperger Syndrome who exhibit areas of giftedness. Founded by the father of an individual with high functioning autism, the Institute was designed to provide gifted people on the autism spectrum with the tools they need to live and work as independently as possible.

    Institute Administrator Carol Statler (pictured above with noted author Tony Attwood) says the institute identifies specific skills and talents and develops strategies for employment and independent living.
     
    Current participants include a young man who can memorize entire books, a woman with perfect pitch, a young man with extraordinary computer program manipulation skills who has had no formal training, and another young man with an encyclopedic knowledge of historical events, cities, and people. We match people with employers who can benefit from these remarkable abilities.
     
    Once a match is established, the Institute provides support to facilitate successful long-term employment.
     
    Defeat Autism Now! Parent Session 
    Join Us in Cherry Hill, NJ on Saturday, April 5

    doreenThe Child As A Whole: Why Behavioral and Biomedical Interventions Are Both Critical to Growth and Recovery
    Doreen Granpeesheh, PhD
    Research supports a medical etiology for autism; while ABA and biomedical practitioners have individually helped provide successful treatment models for autism, in developing a "best practices" model, these therapies must work together to provide the best possibilities. 

    caveVaccinations: Have We Gone Too Far? 
    Stephanie F. Cave, MD, FAAFP
    While vaccinations are credited with saving lives, have we gone too far in our effort to shelter our children from diseases?  Mandatory vaccines, given on a routine basis to infants and toddlers, are increasing in number. Hear an update on some of the recent vaccinations in the schedule. 

    ferroGastrointestinal Pathology and The Specific Carbohydrate Diet in ASD
    Pamela J. Ferro RN, ASN 
    Gastrointestinal problems are prevalent in children with ASD; the use of the Specific Carbohydrate Diet has the potential to address the pathology, contribute to healing the gastrointestinal system, and enhance the optimal health and development of the child. 

    Maureen McDonnellDefeat Autism Now! On A Budget 
    Maureen H. McDonnell, RN  
    Defeat Autism Now! is based on common-sense health principles such as removing toxins from the immediate environment, providing wholesome food, adding basic supplements, and increasing a child's exposure to clean air, pure water, dietary fiber, and exercise; these inexpensive approaches form the foundation of any successful treatment plan. 

    levinsonDestination Recovery - On The Path To Healing
    Andrew Levinson, MD
    Children on the autism spectrum are injured. Whether the etiologic factors are mainly immunologic, toxicologic, or physiologic, the presentation of a child's symptoms depends on their interplay. With appropriately dosed and timed interventions, in many cases the symptoms associated with autism subside. 

    bradstreetPartnering for Success: Parents and Physicians Creating Pathways to Recovery
    Jeff Bradstreet, MD and Jacquie Mancini  
    Dr. Bradstreet is a physician, and father of a child with autism. Jacquie Mancini is the mother of a recovered child; together they will present a practical strategy for building a team to assist children in regaining skills and recovering from autism. 

    jennyHope for Healing Your Child
    Jenny McCarthy
    Jenny will describe which methods, including biomedical treatments, helped her son Evan recover from autism. She will also touch upon the ways she overcame the obstacles that arose during this emotionally charged journey. 

    jepsonThe Science of Autism:  As a Parent and a Practitioner
    Bryan Jepson, MD

    Dr. Jepson will discuss the importance of science in autism treatment and the general state of autism research, including some its limitations in the practice of medicine; he will also discuss how parents might use the scientific method to better help treat their children.

    7:30-11:00: Tapas and Dancing at the Riverside Terrace 
    Relax and unwind at the Saturday Night Tapas Buffet. In addition to an array of delicious dishes (including some gf/cf and SCD items), there will be a DJ who has a special talent for getting people on the dance floor.  (Cash bar.) 

    A few of the items on the tapas menu:
    Imported and Domestic Cheeses and Fruit
    Olive Tapanade, Hummus, Baba Ghanouj
    Warm Artichoke and Spinach Dip with Goat Cheese
    Sliced, Grilled Breast of Chicken with Lemon and Rosemary
    Pesto Pasta Salad, Lentil Salad with Grilled Sausages and Shrimp, Grilled Petite Salmon Fillets with Ginger and Lime
    Assorted Mini Pastries, Eclairs and Cannolis
     
    crown plazaNee
    d Help Getting There?
    For assistance with registering for the Spring Defeat Autism Now! Conference, hotel accommodations, or airfares, please call our Toll Free number 1-866-208-0207. Office hours: 9am-5pm Eastern Time.
     

    For registration assistance or questions regarding topics, speakers, which sessions are right for you, etc. e-mail: Tanya@DefeatAutismNow.com.
     
    For assistance with your travel needs, e-mail:
    Pat@newhopetravel.com
    Mom of an Adult with Autism Works to Solve The Million Dollar Puzzle
    'Let's all support the research we all want and need'
    puzzle piecesLynda Huggins, whose 32-year-old son Jon was one of the original "1 in 10,000" afflicted with autism, continues her work to solve the Million Dollar Puzzle; an extraordinary grassroots initiative she started to fund research with the Autism Research Institute.
     
    Huggins hopes to "build" the world's largest puzzle, linking people, neighborhoods, towns, cities, states, and countries. Each puzzle piece can honor a donor's son, daughter, grandchild, neighbor, or friend.
     
    The Monroe, LA resident hopes to raise one million dollars and increase public awareness of the current autism epidemic. Every penny of every dollar will be donated to ARI to help champion their mission.
     
    "Autism IS Treatable and Recovery IS Possible!" We will, as a global community, find the missing pieces.
     
     
    Letters and Updates From Volunteers:
    "As my 19th birthday was coming up, my friends at college asked me what I wanted for my birthday. Since mine was the last in a series of many, it wasn't much of a surprise that they were planning something. I gave them a request: donate money to autism research (I have a brother with autism back at home). I didn't expect much, but I wanted my friends' names to be on the puzzle pieces to show that they had helped out in the cause. When they handed me an envelope on my birthday, I was in complete shock. I had expected about $10. But my friends had gone around our dorm and collected $70. On top of all of that they threw me a great party with cake, presents, and decorations. I'm really grateful that my friends did this for my family and others affected by autism. I told them that it was the best birthday gift ever."
    Casey Lowe
    Gambier, OH
     
    "As a religion project at my school, I have chosen to help raise awareness
    and money so we can help find a cure for autism. This would be a great way to get people from my community involved with autism and the experience of raising money. It would be great if I could sell at least 500 of these puzzle pieces and help get you closer to your $1 million goal! Thank you so much, and I would love to become a part of your goal for a cure. I think that I will be able to sell around 100-200 puzzle pieces to begin."  
    - Rye, NY
     
    "I am the parent of a 14-year-old with autism. I also work at a school where I work with other kids with autism. Their parents and I have been talking and want to do a fundraiser for autism and we came across yours. We are all looking forward to working with you on this cause. We have two schools and two businesses that are willing to sell them for us. We will work on finding more places. I just received a call from a local bank - they are willing to sell them at all five of their branches during the month of April. We are still working on getting the other banks in the area involved."
    - Larose, La.
     
    "I am the mother of a beautiful 3 year old boy named Nicky who has autism. I am ready to do anything I can to help. My mother-in-law works in a Catholic high school of around 400 and almost everyone there knows my little Nick and I don't think I'd be surprised as to the generosity that will be put forth for the cause. Please, if there is anything else I can do that you know of to raise awareness and raise money for the cause let me know! Thank you so much for fighting for my son before he was even born!"   
    - Bloomingdale IL
     
    "Thanks for letting me be a part of this!" 
    - Portland, OR 
     
    ------------------------------------------------------------------------
     
    lsacAbout Us - from Chair/Parent Lynda Huggins
    We are a group of Home-Based Travel Associates on a mission. We wish to join with parents, grandparents, friends, and neighbors of individuals with autism to raise a million dollars for research through a grassroots effort.
     
    Together we will distribute brightly colored Autism Puzzle Pieces, which can be personalized, for a $1 donation.
     
    To volunteer is to give back unconditionally. It is our pleasure to help raise one million dollars for autism research - one piece of the puzzle at a time. Read More
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