SCHAFER AUTISM REPORT             “Healing Autism:

                             No Finer a Cause on the Planet”

   NOTE CALENDAR DEADLINE JULY 25 FOR AUGUST UPDATE http://home.doitnow.com/~subs/frm/calendar-form.htm

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Monday, July 22, 2003                        Vol. 7  No. 152

    ADVOCACY

   * FDA, CDC & Bush Called Upon to Act as Autism Reaches Epidemic Levels

   * Help UA Kick Off The ‘Rock The 2004 Vote Power Of 1.5 Campaign’

    RESEARCH

   * Influence of Life Stress On Depression: Moderation By A

     Polymorphism in the 5-HTT Gene (abstract)

   * Autism and Visual Fixation

    PUBLIC HEALTH

   * New Chief Repairs CDC’s Image

   * MMR Jab Given All Clear

    EDUCATION

   * Lawsuit Alleges School District and Special Ed. Faculty Broke Law

    SPORTS

   * For Marino, People Overshadow Numbers / Former Dolphins QB Recalls

     Career Mentors

ADVOCACY

FDA, CDC & Bush Called Upon to Act as Autism Reaches Epidemic Levels

      [From an organization press release via PRNewswire.] http://infobrix.yellowbrix.com/pages/infobrix/Story.nsp?story_id=40324375&ID

=infobrix&scategory=The+Iraq+Situation&

      Scientists, physicians, Capitol Hill leaders and parents of autistic children will hold a press conference Wednesday, July 23rd, to announce the latest discoveries into the cause of autism. Held at the Rayburn Office Building, Room 2203, at 10:00 a.m., many will also be there to demand a White House Conference.

      Thousands of parents recently wrote the President requesting a White House Conference to discuss the issues surrounding the rise in autism. Although most requests were not answered, a letter to one parent from President Bush stated that he simply didn’t have time. “He preaches ‘No Child Left Behind’ but he is not willing to put the number one health crisis of America’s children on the national agenda?” asks Bobbie Manning, parent of an autistic child. “My son and thousands like him are sick. They need medical help that won’t happen without the necessary research funding,” she says.

      Independent researchers are now coming forward to tell of their latest medical findings. Parents want the government to take notice and fund other studies to follow the groundbreaking research.

      In an open letter to President Bush, Congressman Dan Burton (R-IN) wrote, “We must develop solutions to help families and communities cope with this crisis, and we must also do all we can to determine what is causing this epidemic and learn how to stop it. A White House Conference could bring together the best scientific minds to chart a comprehensive research agenda to uncover the underlying causes of this epidemic, including the exploration of the biologically plausible theory of mercury poisoning though childhood immunizations and dental amalgams.”

      Autism is now the number one disability for children, even more prevalent than childhood cancer, diabetes and Down’s Syndrome. A study released in 2001 by California’s M.I.N.D. Institute concluded that the increase in autism was not due to better diagnosis, a broader diagnostic range, or migration patterns. The report concluded that the increase is real.

      School budgets are collapsing under the weight of educating autistic children. Medicaid and other social programs in cities and states are feeling the pressure. Autism will cost the American economy over $300 Billion in the next ten years. A recent CDC report found that as many as 1 in 150 children now have autism, which would equal to about 1 in every 68 families. In 1990, only 1 in 10,000 children were affected. April Oakes, Vice-President of the Autism Autoimmunity Project said, “We are now at epidemic levels. If you don’t know someone with autism now, you will soon.”

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Help UA Kick Off The ‘Rock The 2004 Vote Power of 1.5 Campaign’

       [From an Unlocking Autism announcement.]

       Attend the Unlocking Autism Benefit Concert, Friday, August 15, 2003 at The Varsity in Baton Rouge, LA.  Richard’s Honda presents Jonasay, the Washington, DC based alternative rock band, as they head all the way to the deep south for a concert to raise funds for Unlocking Autism’s Call Center! Ever wanted to visit Baton Rouge? Here is a GREAT reason! Silent Auction, Cash Bar, Lots of fun! Tickets only: $10 in advance/$12 at the door.

      Doors open at 8:00pm. Band goes on at 9:00pm

      The first 250 attendees will receive a complimentary t-shirt.

      Laissez les bon temps

      ROCK AND ROULEZ!!!

      (Let the good times ROCK and ROLL!)

      For tickets: http://www.unlockingautism.org/jonasay.asp

      Tickets purchased prior to noon on August 12, 2003, will be mailed. Tickets purchased after that time will be available at will call. Minimum Age: 18.

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RESEARCH

Influence of Life Stress On Depression: Moderation By a Polymorphism in the 5-HTT Gene.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_ui

ds=12869766&dopt=Abstract

Science. 2003 Jul 18;301(5631):386-9.

Caspi A, Sugden K, Moffitt TE, Taylor A, Craig IW, Harrington H, McClay J, Mill J, Martin J, Braithwaite A, Poulton R. Medical Research Council Social, Genetic, and Developmental Psychiatry Research Centre, Institute of Psychiatry, King’s College London, PO80 De Crespigny Park, London, SE5 8AF, UK.

      In a prospective-longitudinal study of a representative birth cohort, we tested why stressful experiences lead to depression in some people but not in others. A functional polymorphism in the promoter region of the serotonin transporter (5-HT T) gene was found to moderate the influence of stressful life events on depression.

      Individuals with one or two copies of the short allele of the 5-HT T promoter polymorphism exhibited more depressive symptoms, diagnosable depression, and suicidality in relation to stressful life events than individuals homozygous for the long allele. This epidemiological study thus provides evidence of a gene-by-environment interaction, in which an individual’s response to environmental insults is moderated by his or her genetic makeup.

      PMID: 12869766 [PubMed - in process]

* * *

Autism and Visual Fixation

      [From The American Journal of Psychiatry.] http://infobrix.yellowbrix.com/pages/infobrix/Story.nsp?story_id=40286629&ID

=infobrix&scategory=The+Iraq+Situation&

      To The Editor (of AJP): Dr. Klin et al. (1) presented evidence for abnormalities in the visual behavior of autistic subjects in filmed social interactions. They reported that autistic subjects looked more at objects, and when looking at faces, they fixated mostly on mouths instead of eyes. We studied the fixation patterns of autistic children shown faces and objects as well, but in static conditions, and did not find any abnormalities in fixation parameters (2, 3). Dr. Klin et al. suggested that their results were the reflection of a core social deficit. However, we feel that a different interpretation is warranted, given the fact that visual abnormalities were not seen with the static stimuli used in our studies. Recent models of facial processing have favored a distinction between the perception of static aspects of faces and the perception of changes due to facial movements (4). Structural facial processing is thought to occur mainly in the lateral fusiform gyrus, while dynamic information is processed in the superior temporal sulcus. The lateral fusiform gyrus is located in the ventral object- processing system. There are indications that the superior temporal sulcus receives input from both the ventral and dorsal streams, which carry dynamic information. Therefore, the abnormal fixation patterns of autistic subjects in response to dynamic but not to static faces might reflect abnormal processing in the dorsal stream. There are several indications from studies of motion perception that dorsal-stream functioning is indeed abnormal in subjects with autism.

      Because of a problem in dorsal-stream functioning, subjects with autism might be inclined to avoid dynamic stimuli, such as moving faces. The greater focus on the mouth if such subjects look at faces is surprising. However, Dr. Klin et al. reported a positive relationship between social competence and viewing time when subjects focused on mouths. Their suggestion “that by focusing on mouths these individuals with autism might attain some understanding of social situations (perhaps because of greater, focused attention on speech), whereas attention to eyes may not lead to any additional social insights” (p. 906) is interesting. The tendency to focus on mouths might reflect an effort of autistic subjects to overcome a basic perceptual problem. One of the hallmarks of the study by Dr. fin et al. is a better definition of the phenotype of autism. We want to stress the importance of studying basic perceptual mechanisms in order to improve the chance of finding phenotypic markers.

+ References:

http://infobrix.yellowbrix.com/pages/infobrix/Story.nsp?story_id=40286629&ID

=infobrix&scategory=The+Iraq+Situation&

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PUBLIC HEALTH

New Chief Repairs CDC’s Image

      [By Daniel Yee.] http://www.suntimes.com/output/health/cst-nws-cdc29.html

      Dr. Julie Gerberding seems as comfortable behind the wheel of her weathered pickup as she is posing in a Chanel suit and Marc Jacobs heels in the pages of Vogue. She appears as confident studying diseases in an Atlanta lab as she is planning policy with Washington’s political elite.

      And in just a year, this woman from small-town South Dakota has restored the credibility of the Centers for Disease Control and Prevention while becoming perhaps the most visible U.S. health official since Surgeon General C. Everett Koop during the Reagan Administration.

      A year ago, the CDC was seen as a slow-to-react agency better at compiling statistics than fighting disease and one that stumbled badly at communicating with doctors and the public during the 2001 anthrax attacks.

      All that has changed with the agency’s fast, up-front response to last summer’s West Nile virus and this year’s outbreaks of SARS and monkeypox, with Gerberding fielding the on-camera questions.

      “Koop, by far, is the gold standard about public visibility, about leading a country through a crisis,” said Robert Blendon, professor of health policy and political analysis at the Harvard School of Public Health. “She’s likely to be the next most visible person, I think. She’s become a clearly more visible figure than the surgeon general,” Richard Carmona.

      The CDC was created in 1946 under the name Communicable Disease Center when malaria was a huge postwar problem in the Southeast. In nearly 60 years, no CDC director has weathered as many crises as Gerberding has in her first year.

      When she was appointed last July 3, the West Nile virus was on its way to infecting 4,100 Americans and killing 284.

      “Her whole attitude was one of ‘How can we help?’ as opposed to interrogating us with, ‘Are you doing enough?’ That makes a huge  difference,” said Marsanne Golsby, Louisiana Gov. Mike Foster’s press secretary, commenting on Gerberding’s visit during the height of that state’s crisis.

+ Article continues:

http://www.suntimes.com/output/health/cst-nws-cdc29.html

* * *

MMR Jab Given All Clear

http://www.sky.com/skynews/article/0,,30100-12381510,00.html

     A link between the rise in autism and the MMR jab has been rejected by a study which also claims to have found evidence that the triple vacine is safe.

      The research attributes the apparent rise in childhood autism to better diagnosis of the condition.

      Researchers believe that some parents who blamed the measles, mumps, rubella multiple vaccine for autism may have been influenced by the media.

      Professor Brent Taylor and colleagues from the Royal Free Hospital and University College Medical School in London argue that the apparent rise since 1979 is not real.

Scare

      Writing in the Archives of Disease in Childhood, they say the scare goes hand-in-hand with the MMR scare.

      The researchers say the increase in incidence was probably due to “increased recognition, a greater willingness to accept the diagnostic label, and better recording systems”.

      In 2001, the Autism Research Unit at the University of Sunderland reported a tenfold increase in autism rates over the previous decade.

      A possible link between MMR and autism was first put forward in 1997 following anecdotal evidence from parents.

Uncertainty

      The following year Dr Andrew Wakefield, then also based at the Royal Free, created a scare by claiming to have found a link between regressive autism and bowel problems possibly relating to the vaccine.

      Dr Wakefield argued that the MMR vaccine should be withdrawn because of uncertainty about its safety.

      Professor Taylor’s team found that before the scare parents cited factors such as domestic stress, seizures or viral illness as triggers for their children’s autism.

      But after 1997 “parents were more likely to attribute regression to vaccination, especially the MMR vaccine”.

      Government health experts have insisted there is no proven link, and warned parents not to put their children at risk by refusing to give them the MMR.

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EDUCATION

Lawsuit Alleges School District and Special Ed. Faculty Broke Law In treatment of girl. ‘Defendants actions were extreme and outrageous; intentional or reckless’

      [By Cynthya Porter for the Winona Post. Winona, Minnesota is 2 3/4 hours south of St. Paul.] http://www.winonapost.com/120901/2news120901.html

      What would you do if you had a child who came home from school with bruises you didn’t understand? What if your child couldn’t speak to tell you how she got them? What if all you had to rely on was the daily teacher log book from the school...could you believe it? Two Winona parents faced these questions, and they allege in their lawsuit that they found some very shocking answers.

      The lawsuit claims that Special Education teachers in Winona School District 861 used unauthorized and unlawful behavior management procedures with a special education student. The lawsuit was filed in Winona County District Court last month. Named in the suit are ISD 861, teachers Judy Kiekbusch and Elizabeth Boettcher, classroom aide Leigh Seeling and Special Education Director Judy Vold.

      The suit, which alleges an eighteen month pattern of battery, false imprisonment, violations of civil rights, negligence and infliction of emotional distress between December 1998 and May 2000, was filed by Jeffry and Paula Philipps on behalf of their daughter, Bailey, 10, who was a special education student at Madison Elementary.

      As a result of contracting La Crosse Encephalitis as an infant, Bailey has been diagnosed with severe developmental disabilities, particularly autism spectrum disorders, and has the developmental level of a child 9 to 14 months old. The school district determined that she was eligible for special education, and she was placed in a classroom for special needs children at Madison Elementary.

      The suit contends that the Philippses began to notice a “dramatic change in Bailey’s behavior” around December of 1998, and they were frequently finding “severe” bruising on her back, arms and other body parts. On December 11, 1998, the suit alleges the Philippses photographed the bruising and notified teachers and Vold of their concerns that Bailey was being injured from the restraining procedure used in the classroom.

      According to court documents filed, Bailey’s Behavioral Intervention Plan (BIP), which is determined by parents and teachers together, provided that if she needed intervention for her behavior in the classroom, the teacher would restrain her by folding and holding her arms across her chest from behind. Because of her disability, Bailey occasionally exhibited inappropriate behavior that required the teacher to restrain her in this manner until she was calm.

      The lawsuit states that when confronted, teachers replied that the bruises were the result of a playground incident, but administrators allegedly acknowledged the injuries were likely from a wooden chair, called a Rifton Chair, which is used to assist a child with disabilities in sitting upright. The Philippses had previously authorized that the Rifton chair could be used occasionally to assist their daughter in the classroom when she had trouble sitting in a regular chair. Teachers offered to add padding to the chair to avoid future bruising.

      Court documents state that on December 14, 1998, “because of the continued bruising and emotional damage suffered by Bailey, the Philippses gave written notice to the teachers that they were revoking consent to the use of any restraints” on her. The text of the note read as follows: “Please understand that we want to have given the restraining a fair trial so we can be done with it, but we decided we no longer want to have Bailey restrained at school. We feel strongly that 1 week is long enough no matter who her para is. Thanks for understanding. P.S. Please still keep us updated on her behavior, daily if necessary.”

      The parents, allegedly with the assurance that Bailey was no longer being restrained, continued her enrollment in the program.

+ Article continues: http://www.winonapost.com/120901/2news120901.html

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SPORTS

(Not really)

For Marino, People Overshadow Numbers / Former Dolphins QB Recalls Career Mentors

      [From the Intelligencer Journal.] http://infobrix.yellowbrix.com/pages/infobrix/Story.nsp?story_id=40304378&ID

=infobrix&scategory=The+Iraq+Situation&

      Dan Marino was always about something more than mere numbers. Even if those numbers represent for quarterbacks the NFL equivalent to Mount Everest.

      The most prolific passer in pro football history, Marino ranks first among the NFL’s all-time leaders in touchdown passes (420), total yards passing (61,361), pass attempts (8,358) and completions (4,967). He is also the first QB in league history to produce six 4,000-yard seasons, and holds the NFL record for most seasons (12) with over 3,000 yards passing.

      Trying to measure Marino by cold statistics, however, is like trying to measure a beach by its grains of sand. To be truly appreciated, both have to be viewed in their entirety.

      For Marino, that means seeing the man behind the numbers.

      The man who, along with his wife Claire, helped create the Dan Marino Center in Miami Children’s Hospital after their son Michael was diagnosed with a mild form of autism. In conjunction with the same Weston, Fla. hospital, Marino and his wife also created the Dan Marino NETT (Neurodevelopment Evaluation Treatment Teams).

      During his 17-year career with the Miami Dolphins that ended with his retirement in 1999, Marino also sponsored an annual golf tournament for the benefit of the Leukemia fund, and organized another charity golf event for the National Italian-American Hall of Fame’s Miami chapter.

      Marino is in Hershey this weekend to serve as Honorary Chairman of the 46th Annual PNC Big 33 Football Classic to be played tonight at Hersheypark Stadium. A star QB for Central Catholic High School in western Pa. and later for the University of Pittsburgh, Marino played in the 1979 edition of the Big 33 Classic in Altoona.

      It seemed no surprise then, that when he was asked at Friday’s press conference in the Hershey Lodge and Convention Center for his memories of playing in the Big 33 game, the future Pro Football Hall of Famer recalled more the intangibles of the event rather than specific plays or the final score.

      “I remember the hospitality in the community, it was such a class event and (the community) was such a big part of it,” he said, recalling the Aug. 11, 1979 game in Altoona.

      Appearing tanned and fit in a light-colored sports jacket, blue tie and white shirt, Marino paid tribute to his host family, the Wilt’s, but had less to say about a Big 33 game that at the time was an East-West intra-state matchup.

      Teaming with another future pro QB, Jeff Hostetler, who guided the New York Giants to a Super Bowl victory over the Buffalo Bills in 1991, Marino completed 7 of 13 passes for 72 yards and one touchdown, a 2-yard toss to Dave Johnson that helped fuel the West’s 24-2 victory.

      “The game itself?” Marino said in response to a question. “I remember us beating the other side pretty good. We had a lot of great players, a lot of guys that went on to play in the NFL, I remember that. But do I remember particular plays? No.”

      Marino paused, then elicited a round of laughter from the crowded room.

      “I’ve been hit in the head a lot since then,” he said smiling, “so I don’t remember all those things.”

      He does remember, however, those who helped guide his path, both on and off the field, in the intervening years. Among them, former Dolphins coach Don Shula, who coached Marino for 13 years in Miami; Jimmy Johnson, who succeeded Shula with the Dolphins; Jackie Sherrill, Marino’s coach at the University of Pittsburgh; and Rich Erdelyi, who coached Marino at Central Catholic and now serves as offensive coordinator at Carnegie Mellon.

      “And probably the best coach I ever had was my dad,” Marino said, raising his voice for emphasis. “He wasn’t a football coach, but he was pretty good. The things we talked about, just being a dad, just being there for you.”

      Marino paused.

      “Sometimes,” he said, “that’s more important than any football coach helping you, I think.”

      Spoken like a man who made football his passion, but not his life.

      A man whose success could never be measured by mere numbers alone.

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Lenny Schafer, Editor mailto:edit@doitnow.com

Edward Decelie  Debbie Hosseini  Richard Miles  Ron Sleith  Kay Stammers

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