The Schafer Autism Report tm
Healing autism: no finer a cause on the planet
SPECIAL EDITION 

Monday, February 21, 2005                                     Vol. 9  No. 30




NEWSWEEK COVER: 'The New Age of Autism' Scientists Hope to Identify Early Markers of Autism in Babies as Young as Six Months


    CARE       
   * Expectant Mothers Should Be Advised Not To Drink Alcohol

    ADVOCACY
   * Canandian Parents Appeal Human Rights Ruling On IBI (Behavioral) Therapy
   * NAA Announces Launch of the All Access Computer Project

   
BOOK REVIEW
   * Autism Spectrum Disorders

  

Newsweek Cover on Autism
 
      New York, Feb. 20 PRNewswire - Some of the most exciting new research on autism involves efforts to spot clues of the disorder in infants as young as 6 months, Newsweek reports in its February 28 cover story "The New Age of Autism," on newsstands Monday, February 21. Today most children with an Autism Spectrum Disorder (ASD) aren't even seen by specialists until they've passed their 2nd birthdays, and many aren't diagnosed until at least the age of 3. But in a joint effort by the National Alliance for Autism Research and the National Institute of Child Health and Human Development, researchers at 14 sites, from Harvard to the University of Washington, are studying the baby siblings of children with autism. By measuring the infants' visual and verbal skills and their social interactions, scientists hope to identify early markers of autism before children turn 1, reports Senior Writer Claudia Kalb.

       At McMaster University in Ontario, Dr. Lonnie Zwaigenbaum is studying the baby siblings of children with autism. Zwaigenbaum says that signs of the disorder, though at first subtle, are often there from the very beginning. Preliminary data show that 6-month-olds who are later diagnosed with autism generally have good eye contact, but they're often quieter and more passive than their peers, and they may lag behind in motor developments. The Baby Sibs consortium is also looking for early physical markers of the disorder, starting with the size of children's heads. A landmark study published in 2003 found that kids with autism experienced unusually rapid head growth between 6 and 14 months, and consortium members want to see if their young siblings do, too.  In their hunt for neurological clues, scientists are unveiling the inner workings of the autistic   mind, Kalb reports. Using eye-tracking technology, Yale's
Dr. Ami Klin is uncovering fascinating differences in the early socialization skills of children with autism. Klin has found that when affected toddlers view videos of caregivers or babies in a nursery, they focus more on people's mouths-or on objects behind them-than on their eyes. The study echoes findings in adults and adolescents with autism. "Our goal is to identify these vulnerabilities as early as possible," says Klin.
      Beyond advances in early diagnosis, Kalb also reports on new treatments for autism. Yale's Robert Schultz and James Tanaka at the University of Victoria in Canada are hoping computer games can help kids with autism learn how to engage with human faces and identify emotions. The children follow directions to shoot at smiley faces or click on the guy who looks sad. So far, says Schultz, the kids appear to be improving. But will it help change the course of their lives? "That's the million-dollar question," he says.
      The Newsweek cover package, produced in conjunction with NBC News, also includes Suzanne Wright's first-person account of her family's experience with autism. Wright and her husband Bob Wright, vice chairman of GE and chairman and CEO of NBC Universal, co-founded the Autism Speaks Foundation after their then-2-year-old grandson was diagnosed with autism in March 2004. "We watched helplessly as a delightful, apparently normal toddler lost his ability to interact with the outside world. It was as if he'd been kidnapped or somehow had his mind and spirit locked in a dark hole deep within him. For a grandmother, this has been indescribably painful to witness. For his mother and father, it is heartbreaking," Wright writes.

 view n.y.c.
special
report
 on autism

After her grandson's diagnosis, Wright was surprised to learn that autism is the most widely diagnosed developmental disability in the nation, affecting 1 in 166 children. But the disease receives only $15 million per year from private sources, compared with more than $500 million for childhood cancers, muscular dystrophy, juvenile diabetes and cystic fibrosis-which, combined, are less common than autism. To help close this gap in awareness and resources, the Wrights established Autism Speaks, a foundation whose goals include the development of a central database of 10,000-plus children with autism that will provide, for the first time, the standardized medical records that researchers need to conduct accurate clinical trials.

      Also in the cover package, Contributing Editor Melinda Henneberger profiles 26-year-old Sue Rubin, who wrote the screenplay for "Autism Is a World," an Oscar-nominated documentary by Gerardine Wurzburg about Rubin's life. Rubin doesn't remember much about the first 13 years of her life, when she was considered severely mentally retarded: "Sadly, I was locked in autism." But in 1991, at the suggestion of a school psychologist, she tried communicating with a keyboard. She's now a junior history major at Whittier College and lives semi-independently, with an aide, in her home a few blocks from campus. Rubin still can't communicate verbally beyond a few phrases. But she's typed on her own for several years now, and had a lot to say-on autism, politics and her favorite pastime, playing the ponies-in a recent interview with Henneberger.

www.msnbc.msn.com/id/6994474/site/newsweek/- main story  /www.msnbc.msn.com/id/6994441/site/newsweek/ - Suzanne Wright 
www.msnbc.msn.com/id/6999831/site/newsweek/ - 'My Mind Began to Wake Up' 

CARE

Expectant Mothers Should Be Advised Not To Drink Alcohol

May Pose Health Risks To The Foetus, Argues An Editorial In This Week's BMJ.

http://i-newswire.com/pr7485.html

      i-Newswire  While the UK Department of Health advises that women can safely drink one or two units of alcohol per week, a team of psychiatrists in London highlight several studies which cast doubt on the guidance.
      The authors looked at reports into foetal alcohol syndrome, a condition developed by some babies exposed to alcohol in the womb, resulting in stunted growth, facial
abnormalities and neurocognitive deficits ( brain  disorders ). 
An overarching foetal alcohol spectrum disorder - traceable to the pregnant mother's alcohol consumption say the authors - has also been identified.
      Both the syndrome and disorder cause a wide range of behavioural disorders, they argue, including hyperactivity, problems with mental organisation, and difficulties in understanding the consequences of one's  behaviour. Symptoms may also overlap with conditions such as  autism  and attention
deficit hyperactivity disorder ( ADHD ).
      Previously the syndrome was thought to be caused by mothers drinking heavily in pregnancy. But the authors argue that recent studies suggest that far less exposure to alcohol in the womb may put babies at risk-as little as one drink per week in one study. Individual differences in alcohol metabolism may protect most women when drinking small quantities, add the team, but it is currently impossible to predict who is at risk and who is not.
      More research is needed to find out just how much alcohol may be damaging to a foetus, argue the authors. In the interim, the only safe message for expectant mothers is to abstain from alcohol, they conclude.
 

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ADVOCACY

Canandian Parents Appeal Human Rights Ruling On IBI (Behavioral) Therapy


      [John John Driscoll.]
www.oacrs.com/News/2005/February/Feb18.htm

      More than 100 parents of children with autism are continuing the fight on two legal fronts for Intensive Behaviour Intervention (IBI) therapy for their children.
      They scored one victory when an Ontario Human Rights Tribunal ruled Jan. 3 in Barrie that parents asking for equal access to IBI treatment for their children can proceed jointly with their human rights complaints.
      However, they were not successful in their bid to obtain interim relief for their children, the Tribunal concluding that exclusive jurisdiction to grant such relief resides with the Superior Court of Justice.
      Superior Court has granted injunctive or interim relief, ordering the province to provide IBI treatment for children who reach the age of six, in about a dozen cases in the past two years.
      The Tribunal's interim relief ruling is being appealed in divisional court by some of the 108 clients represented by Ellie Venhola, a lawyer with the Community Legal Clinic for Simcoe, Haliburton and Kawartha Lakes.
      If the appeal is granted it will have a huge impact on all Ontario tribunals from labour relations to workers' compensation, Ellie told Family Net.
      Most of her clients, however, have requested to go to Superior Court to ask for injunctive (interim) relief, she says. Going to Superior Court carries much more risk in court costs for parents should they lose, she said.
      "Parents of autistic children have been pulled too and fro and are worn out but they believe IBI treatment is worth fighting for and have decided to bite the bullet," she said. "It shows the remarkable tenacity and determination of these parents."
      It is much more affordable for parents to go through the Ontario Human Rights Tribunal because it was set up as a forum for people with very little funds to bring their complaints, Venhola says.
      "In our appeal in divisional court, we are asking for a procedural ruling," she says. "We believe there is no reason the Tribunal couldn't accept a request for interim relief."
      Interim relief has been granted by Superior Court until the Supreme Court of Canada hands down a ruling in the crucial autism-treatment test case known as the Wynberg case.
      "There have been a lot of complications and offshoots such as interim relief in this issue," Venhola said. "We are hoping things are all going to come together with Wynberg."
* * *
NAA Announces Launch of the All Access Computer Project

      Some families have no access to computers or the Internet.  In today's world, a computer is the best resource for families dealing with autism spectrum disorders. Not only is it a tool for learning the latest 

treatments and interventions, it can provide desperately needed support via a network of other parents and caregivers.
      The NAA All Access Computer Project will provide computers and Internet access to families who are



unable to afford it.
      For more information visit NAA at http://www.nationalautismassociation.org/allaccess.php
      Questions may be directed to Leslie Davidson, leslie@nationalautism.org.
* * *

BOOK REVIEW

Autism Spectrum Disorders
by Chantal Sicile-Kira
(with Foreward by Temple Grandin, Ph.D.)

Reviewed by Terri Otto

      [From the Advocate, first edition 2005, Autism Society of America, thanks to C. Sicile-Kira.]

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      The new Autism Spectrum Disorders by Chantal Sicile-Kira is the most important book on autism that I have read to date.  As the mother of a fifteen year old son with autism, I have read dozens of books on the subject and no book has tied it all together for me in such an intelligent and useful way.

      Autism Spectrum Disorders wastes no time getting right to the nugget of what a family with a newly diagnosed child wants and needs to know.  By first de-bunking the myths and common misconceptions about autism and then moving through the early history of autism spectrum disorders, the author clears the stage for the realities of daily life with a child diagnosed with autism. Sicile-Kira understands that families have been starved for information presented in a logical format without prejudice or condescension and this book delivers on all counts.
      This book intelligently tackles the big issues such as the importance of seeking a diagnosis, the grief cycle, controversy over vaccines, and where to search for treatments, therapies and interventions.  Sicile-Kira's writing on these painfully emotional subjects is clear and focused and most importantly without any agenda other than to inform.  How refreshing it is to read short concise descriptions of biological treatments or behavioral therapies!  The readers are respected enough to be given the opportunity to compare interventions for themselves and are then provided with the information to do further research on their own. 
      For me, the chapter on education is the real tour-de-force of this book.  The author first describes her own experiences as a parent forced to file for due process because of abuse and neglect in her own son's classroom. By now most parents are already sitting up and taking notice, but then she does the literary equivalent of talking directly to the camera in saying: "If you are in a position of power or hold the purse strings at the state or federal level, I hope that you will read carefully and reflect long


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 and hard about the state of education for children with ASD's in the United States today and the working conditions the educators are faced with."  This chapter is not meant to demonize the state of special education in America, but is rather a rallying cry for parents to refuse to take No for an answer when trying to find "free and appropriate" education for their children.
      Sicile-Kira addresses the problems of transitioning from high school to adult life and the estate planning issues all families need to deal with, including special needs trusts. The book also includes excellent chapters on the importance of building relationships in the community and maintaining a healthy and happy family life despite extreme challenges. The author uses wit in discussing some of these challenges but does not attempt to gloss over or minimize them. She gives her own tried and tested solutions to the problems of family outings, shopping, sibling issues (her daughter, Rebecca, writes a very honest essay on life with an autistic older brother) as well as what to say to nosy opinionated strangers.  The book is sprinkled throughout with wonderful little mini-essays called "Food for Thought"  by various experts in the field of autism as well as Donna Williams, Temple Grandin and other adults living with ASDs.
      Sicile-Kira ends with a few honest, non- sugar coated lines that really resonated like a manifesto to me: "Some parents say that if it weren't for autism, they wouldn't have met the wonderful people they have come to know, that autism has given them a raison d'etre.  As for me, I tend to believe that even without autism in my life, I would have met some wonderful people and become committed to some worthy cause......I could still have a wonderful
rewarding life without autism."   My sentiments exactly.
      Autism Spectrum Disorders is more than a Complete Guide to Understanding Autism. It is also an empowering book that aims to help readers solve the most pressing problems while providing the tools to see the big picture.

COPYRIGHT NOTICE: The above items are copyright protected. They are for our readers' personal education or research purposes only and provided at their request.  Articles may not be further reprinted or used commercially without consent from the copyright holders. To find the copyright holders, follow the referenced website link provided at the beginning of each item.

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Lenny Schafer, Editor mailto:edit@doitnow.com Edward Decelie  Debbie Hosseini  Richard Miles  Ron Sleith  Kay Stammers