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Health-care Reform Bill Passes Both Houses; Affects Autism

Reconciliation "Fix" Sent to the Senate

      By Hannah Cary from the Autism Society of America. is.gd/aTug0

      The US House of Representatives passed the Senate version of health-care reform. "The Autism Society is pleased that Congress took a step in the right direction late last night" said Lee Grossman, President and CEO of the Autism Society, "but we have much more work to do to ensure that families affected by autism have access to appropriate services and supports"
      After more than a year of debate, the bill passed 219 to 212 and is expected to be signed into law early this week. This bill, which passed the Senate in late December, includes the following provisions for people with autism:
-       Insurers would be prohibited from excluding coverage based on pre-existing conditions;
-       Insurers would be prevented from selectively refusing to renew coverage;
-       Insurers would no longer be able to charge people different premiums based on their health status, gender or occupation;
-        A standardized annual out-of-pocket spending limit would be established so that no family would face bankruptcy due to medical expenses;
-       Annual and lifetime benefit caps would be prohibited;
-       Mental health would be covered;
-       “Habilitative” and “maintenance services” would be covered; and
-       Coverage of “behavioral health treatments” such as ABA therapy, would be required.  Another bill, titled the Reconciliation Act of 2010 (H.R. 4872), also passed the in the House on Sunday with 220 votes to 211. This reconciliation package was included as a compromise to many Members of the House, and fixes issues in the Senate bill that had kept many Members from passing the Senate bill earlier. This bill will be voted on in the Senate by budget reconciliation rules, which only require 51 votes and would prevent a filibuster.

• • •

RESOURCES

Program Gives Autistic Students Confidence To Join Work Force

By Jennifer Reeger  Tribune-Review  is.gd/aSnjW


      Shawn Curren hates when his hands are dirty.
      When the students in his class at NHS Human Services Autism School in Whitney pass around cheese curls to eat, Curren, 16, of Greensburg
immediately has to wash off the orange powder


Greg Roadman, 17, of Latrobe provides water to the small animals at the Adam and Eve Pet Station near his hometown. Roadman takes part in the NHS Human Services work program for autistic students.
Eric Schmadel | Tribune-Review

left on his fingers.
      But when his boss at Adam and Eve Pet Station near Latrobe asks him to dig into a bag of hay and pull out handfuls to put in a rabbit cage, Curren obliges happily.
      "Try to get it around the bowl here," pet store owner David Shultz tells Curren as he scoops up one last handful. "That's good!"
      Curren's foray into the working world is part of NHS Human Services' transition program for autistic students who attend the organization's schools in Herminie and Unity.
      It's an opportunity for autistic students at the two NHS schools in Westmoreland County to go out into the community, learn about different jobs and hone their skills so they're ready to work when they graduate from high school at age 21.
      "If we don't start early, we're really setting them up for failure when they turn 21," said Sharon Greene, senior director of the schools.
      With the unemployment rate for autistic adults as high as 80 percent and with one in 110 American children being diagnosed with the developmental disorder, the need to better prepare the students for adulthood takes on urgent importance, said Dr. Cathy Pratt, board chairwoman of the Autism Society of America.
      "As the numbers increase, if these individuals are graduating into unemployment that means there will be a greater stress put on our economy and our social services," Pratt said. "We spend a lot of resources on early intervention and on educational programs and individuals are going to spend more of their years as adults than as children."
      The schools began strengthening their transition services for students ages 14 and older last fall.
      At the beginning of the school year, NHS opened laboratory work sites at both schools where kids could learn vocational skills, including office work, food preparation and horticulture.
      They've put together pizza boxes and have done collating for offices in preparation for the real world.
      About a month ago, students about age 16 began going out into local businesses to put what they learned in school to the test.
      Tiffany Baer, an NHS intern, called businesses throughout the county to find places willing to give the students a chance. Some businesses were reluctant, Baer said, because they don't understand autism.
      But those business operators who stepped forward have embraced the program.
      "They work so well with the kids, and they're so willing to give us a chance," Baer said.
      At Adam and Eve, students clean animal cages, feed fish and do other tasks to prepare Shultz for his business day.
      "They come in on time, and they pick it up really well," Shultz said.
      Curren said cleaning the cages is his favorite part of working at Adam and Eve.
      "I want to have a job at the Pittsburgh Zoo to take care of the animals," Curren said.





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• • •

NEWS

Children With Autistic Traits Remain Undiagnosed

is.gd/aTr0Y

      There has been a major increase in the incidence of autism over the last twenty years. While people have differing opinions as to why this is (environment, vaccines, mother's age, better diagnostic practice, more awareness etc.) there are still many children who have autistic traits that are never diagnosed clinically. Therefore, they do not receive the support they need through educational or health services.
      In recent studies these undiagnosed children have been included in estimates of how many children have autism spectrum disorder, or an ASD (which includes both autism and Asperger's syndrome). Such studies have estimated that one in every hundred children has an ASD.
      A study published in a recent issue of the Journal of Child Psychology and Psychiatry found that a large number of undiagnosed children displayed autistic traits: repetitive behaviors, impairments in social interaction, and difficulties with communication. These traits were at levels comparable to the traits displayed by children who held a clinical diagnosis (all diagnosed between years one and twelve). However, the undiagnosed children were not deemed eligible for extra support at school or by specialized health services.
      The lead researcher of the study, Ginny Russell, asks, "ASD diagnosis currently holds the key to unlocking intervention from school systems and health programs. Perhaps these resources should be extended and available for children who show autistic impairments but remain undiagnosed" Russell points out that the study also shows that there is a gender bias in diagnosing children with Autistic Spectrum Disorders - boys are more likely to receive a diagnosis than girls, even when they display equally severe symptoms.
      More information: "Identification of children with the same level of impairment as children on the autistic spectrum, and analysis of their service use." Ginny Russell, et. al. The Journal of Child Psychology and Psychiatry (JCPP); Published Online: March 22, 2010; is.gd/aTr46

• • •

Best Buy Replaces Electronics Items Stolen From Autism School

      By Staten Island Advance  is.gd/aToPj

      Staten Island, N.Y. - The Eden II School for Children with Autism, Elm Park, received several Nintendo Wii consoles, games and a camcorder Monday from Best Buy, New Springville, in the wake of a recent burglary at the school.
      The school's pet hamster, as well as personal items, money, digital cameras, laptops and gaming systems were among the items discovered missing on March 8. Joanne Gerenser, the executive director of the Eden II program, said it was the first break-in during the 10 years the school has been at 150 Granite Ave. The school has met with their alarm company to review and upgrade the security systems.
      To help the school recuperate from its losses, a group of concerned Islanders formed Staten Island for Eden II. Group member John F. Lavelle, whose son is an attendee at the school, called Best Buy to arrange a donation program, hoping for something where Staten Islanders could drop off used electronics. The staff of Best Buy called a meeting after Lavelle’s inquiry, and agreed to replace all electronics the school lost Monday, they delivered several Wii consoles, which retail for $200 each, as well as games for the consoles and a camcorder. Though they had no Wiis in stock, the store arranged to get the gaming systems from a New Jersey Best Buy.
      Referring to the consoles as "the hard-to-get stuff," Ms. Gerenser explained that the donation was "more than we could ever expect, especially in this economy."

• • •

PUBLIC HEALTH

Unvaccinated California Children at Center of Measles Outbreak

      By Todd Neale, Staff Writer, MedPage Today, Reviewed by Robert Jasmer, MD; Associate Clinical Professor of Medicine, University of California, San Francisco.

is.gd/aSnwo

      Children whose parents refuse vaccinations for them provide fertile ground for the spread of vaccine-preventable diseases, an investigation of a 2008 measles outbreak in San Diego demonstrated.
      Although the rate of two-dose immunization against measles was 95% in the area, a single case of measles from a 7-year-old child returning from overseas sparked an outbreak that exposed 839 people and sickened 11 other children, according to David Sugerman, MD, MPH, of the CDC's Epidemic Intelligence Service, and colleagues.
      None of the 12 children, who ranged in age from 10 months to 9 years, had been vaccinated -- nine because their parents had refused the vaccine and three because they were too young, the researchers reported in the April issue of Pediatrics.
      Although the virus was not spread extensively, it came at a substantial cost of $176,980 for investigation, containment, and healthcare.
      In San Diego, the overall rate of vaccine refusal -- predominantly because of safety concerns -- was low at 2.5% in 2008, but it had been rising since 2001.
      The possibility that increasing rates of intentional undervaccination could lead to a rise in outbreaks of vaccine-preventable diseases is "a monumental concern," according to Anne Gershon, MD, a pediatric infectious disease expert at Columbia University Medical Center in New York City.
      "It's very important for parents to understand that the disease itself is always more serious than a true reaction to the vaccine," she said in an e-mail.
      The endemic transmission of measles was declared eliminated in the U.S. in 2000 because of widespread use of an effective vaccine, but the virus remains endemic in other parts of the world.



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• • •

MEDIA

A Mother's Courage: Talking Back To Autism on HBO April 2

is.gd/aTj9q

      A Mother's Courage: Talking Back To Autism is HBO's documentary that is a mother's journey to get answers for her child's autism.
      Kate Winslet will narrate the film, debuting on 



International Autism Awareness Day.
      Margret, whose ten-year-old son Keli is severely autistic, has tried a number of treatments to help her son.  Consumed by a desire for knowledge about this mysterious and frustratingly complex condition, she travels from her home in Iceland to the United States and Europe, meeting scientists and other experts, as well as other families touched by autism.  The stakes could not be higher:  One in 150 children is diagnosed with autism every year, with boys outnumbering girls four to one.
      Chronicling Margret’s journey, the moving documentary A Mother's Courage: Talking Back To Autism debuts Friday, April 2 (6:00-7:45 p.m. ET/PT), International Autism Awareness Day, exclusively on HBO.
      Narrated by Oscar winner Kate Winslet and directed by Fridrik Thor Fridriksson (the Oscar nominee “Children of Nature”), this inspiring film follows one woman’s quest to understand autism, a neural developmental disorder.  While she holds no unrealistic expectations for her son Keli, Margret worries that he may never be self-sufficient or express himself normally.  Traveling from Iceland to the United States and Europe, she learns how the brains of autistic children differ from “normal” children and discovers new techniques that could offer a promising future for children with autism, including her son.
      Along the way, Margret connects with families of autistic children, who share stories of their efforts to help their kids interact with the world around them.  Many of their accounts echo her own struggles, including the endless doctor visits and experiments with different treatments, the complication of doing everyday tasks, and the inability to communicate with their children, perhaps the most painful and frustrating aspect of autism for them.  However, many families detail innovative new therapies that might break down the wall of autism, comforting Margret with a glimmer of hope that her son may be able to communicate on a level she didn’t previously expect.
      After the family returns home, Margret says, “Before, we used to talk about Keli in front of him, but now we talk to him.”  With new hope for the future, she adds, “I can start to get to know my own child."
      Among the experts and advocates Margret encounters are:  Dr. David G. Amaral, research director, MIND (Medical Investigation of Neurodevelopmental Disorders) Institute; Dr. Simon Baron-Cohen, director, Autism Research Centre at the University of Cambridge; Dr. Geraldine Dawson, chief science officer, Autism Speaks; Dr. Temple Grandin, best-selling author, animal scientist and autism advocate, who was recently the subject of an HBO Films biographical drama; Joseph E. Morrow, co-founder and president of ABC, Inc., a school that provides applied behavioral techniques for children with special needs; Soma Mukhopadhyay, who developed the Rapid Prompting Method to teach her autistic son Tito, now a published author; and Portia Iverson and Jonathan Shestack, parents of an autistic child and founders of Cure Autism Now.
      A Mother's Courage:  Talking Back To Autism was directed by Fridrik Thor Fridriksson; executive producer, Kristin Olafsdottir; producer, Margret Dagmar Ericsdottir; narrated by Kate Winslet; director of photography, Jon Karl Helgason; editor, Thuridur Einarsdottir; music by Sigur Rós and Björk. 
      Other HBO playdates:  April 7 (10:30 a.m.), 8 (7:00 p.m.), 10 (9:45 a.m.), 13 (10:15 a.m.) and 18 (2:15 p.m.) HBO2 playdates:  April 7 (8:00 p.m.) and 28 (6:15 a.m.)
      
• • •

PEOPLE

Kate Winslet Ditches Autism Premiere

      From gossipcenter.com is.gd/aTiVO

      It’s no secret that she’s been going through some personal turmoil as of late, and now Kate Winslet has pulled out of her appearance at the “A Mother’s Courage: Talking Back to Autism” premiere.
      According to a report, the “Eternal Sunshine of the Spotless Mind” actress will no longer be attending the HBO-sponsored event for the film she narrated.
      Earlier today, and industry insider received word that Kate was no longer on the “expected to attend” list, causing concern over event attendance.
      Ms. Winslet recently announced that she and her director husband Sam Mendes will be getting divorced.

• • •

Trial Starts Monday For Colodrado Man Accused Of Killing Son

      Mesa County, CO. (KKCO) - The trial of a  man accused of killing his own son is set to start Monday.
      Jury selection is scheduled to start Monday in the murder case of a Allan Grabe.
      Police say back in 2008, Grabe shot his 13-year-old son nine times at close range while he slept. The 53-year-old has pleaded not guilty by reason of insanity.
      According to an arrest affidavit, after shooting his son, Grabe yelled at his wife saying he had to kill him because she was quote "ruining him."
      Grabe's son, Jacob, was an eighth-grader at Grand Mesa Middle School. He suffered from a disorder similar to Autism.
      The trial is expected to last three weeks. Stay with 11News for the verdict.

• • •

11-Year-Old With Autism Critical After Near Drowning in Arizona

      By Katie Fisher. is.gd/aTkaa

      Queen Creek, AZ -- An autistic 11-year-old boy is in critical condition after he was submerged in a bath tub at his Queen Creek home for several minutes Sunday.
      Rural Metro spokesperson Chief Wyatt Oden said crews were called to the scene near Hunt Highway and Monte Vista Boulevard around 11 a.m. after reports that a child had been under water in the tub for two to three minutes.
      According to Oden, the boy's foster parents were performing CPR when paramedics arrived at the east Valley home.
      The child reportedly had a strong heartbeat when he was transported from the scene to Phoenix Children's Hospital.
      Pinal County Sheriff's Office spokesperson Tamatha Villar said the "severely autistic" boy remains in critical condition.
      Officials have not released the boy's name.

• • •

TREATMENT

Specific Carbohydrate Diet Helps Treat Autism

Autistic Children See Gains from Eating Pure Foods, Simple Carbs

      By Jane Anderson is.gd/aTqBC

  
      For most people, the term "autism diet" refers to the gluten-free, casein-free (GFCF) diet, which is well-known for improving autism symptoms in children on the autism spectrum. But for somechildren, the GFCF diet may not be enough. These children often improve

initially and then begin to regress again, even though their parents are confident they're following the diet correctly.
      These children may need extra help in the form of a stricter autism diet approach. The Specific Carbohydrate Diet could help them begin to improve again, and some parents even have reported complete recovery from autism in children following the SCD.
      SCD Popularized in Breaking the Vicious Cycle The SCD first was developed by Dr. Sidney Haas, a New York City pediatrician who practiced in the first half of the 20th century. He used it successfully to treat ulcerative colitis and Crohn's disease patients.
      Elaine Gottschall, author of the diet bible Breaking the Vicious Cycle, credited Dr. Haas with saving her daughter, who as a child in the 1950s suffered from severe digestive disease. In the late 1990s, toward the end of her life, Gottschall looked into using the SCD diet for children with autism.
      Although the diet is restrictive and can be difficult to follow, many parents report huge gains in their children. Dr. Sidney Baker, cofounder of the group Defeat Autism Now!, calls SCD "the best treatment that I have found so far for many children on the autism spectrum."
      Autism Diet Addresses Possible Autism Causes Many autistic children have severe gastrointestinal symptoms, including diarrhea, constipation, bloating and pain. Some autism specialists believe these symptoms could be caused by bacterial or fungal overgrowth in the intestines, and autism treatments -- especially those recommended by alternative medicine specialists -- aim to eradicate the bacteria and yeast.
      The SCD improves autism symptoms by literally starving the bacteria and yeast in the intestines. To do this, the diet eliminates the complex starches that feed the bacteria and yeast. Killing these bad bugs, Gottschall said in her book, not only leads to improvements in the GI tract, but also improves neurological function because many neurological problems actually originate in the digestive system.
      SCD Eliminates Grains, Potatoes, Processed Foods According to Gottschall, there are two groups of carbohydrates: monosaccharides and disaccharides. Monosaccharides are simple carbohydrates, easily broken down in the intestines. Disaccharides, meanwhile, are complex carbohydrates, and people with badly damaged gastrointestinal systems cannot break them down.
+ Read more: is.gd/aTqBC

• • •

Deep Brain Stimulation Reduces Epileptic Seizures

      By Karla Gale. is.gd/aTq4c

      Reuters Health - Bilateral thalamic stimulation reduces seizure frequency and severity in medically refractory epilepsy, new study findings show.
      About a third of people with epilepsy continue to have seizures despite treatment. "We revived deep brain stimulation for epilepsy partly because it was having such great success with Parkinson's patients," lead investigator Dr. Robert Fisher, from Stanford University School of Medicine, California, told Reuters Health.
      "We chose the thalamus, which is connected to wide regions of cortex, as a way to favorably influence electrical activity in wide regions of the brain," Dr. Fisher said. "An advantage is patients can have multiple sites of seizure origin, and even if we do not know exactly where all of them are, stimulation here may still be beneficial."
      The randomized multicenter study involved 110 adults with refractory partial seizures, including secondarily generalized seizures, at least six times per month. Patients were taking up to four antiepileptic drugs at baseline, which they continued for at least a year.
      All subjects had electrodes implanted into the anterior nuclei of the thalamus. A month later they entered a 3-month blinded phase in which half of them received stimulation and half did not. In the stimulation group patients, the devices delivered 5 volts using 90 microsecond pulses, 145 pulses/second, "on" 1 minute, "off" 5 minutes.
      Then, in a 9-month unblinded phase, all subjects received stimulation, after which the investigators continued to follow everyone long term. Through all phases, participants received 325 subject-years of active stimulation for a mean duration of 3.0 (maximum 5.0) years.
      Forty-nine patients already had vagal nerve stimulators, which the investigators swapped out for the thalamic stimulators. Twenty-seven had previously undergone epilepsy surgery, but this factor did not affect their outcomes in this study.
      In a March 18 online report in Epilepsia, the authors report that one subject had 210 brief partial seizures corresponding to the 1 minute on/5 minutes off cycle of stimulation in the first 3 days of activation. Seizures stopped when stimulation was turned off and did not return when stimulation was restored at 4 volts instead of 5. This outlier was excluded from the analyses.
      By the end of the blinded phase, seizure frequency had declined significantly by a median of 40.4% in the stimulation group versus 14.5% in controls. Complex partial seizures improved more in the stimulated group (36.3% vs 12.1% improvement, p = 0.041). Also, the stimulation group had fewer injuries produced by seizures (7% vs 26%, p = 0.01).
      Treatment was most effective for seizures originating in the temporal regions and among subjects with multifocal or diffuse seizure origin.
+ Read more: is.gd/aTq4c

• • •

COMMENTARY

Fombonne, Lord, Leventhal vs. Children with Autism

      By Katie Wright on Age of Autism. is.gd/aTpAc

      What kind of human being makes money by testifying against disabled children with autism?
      Dr. Eric Fombonne
      Dr. Catherine Lord
      Dr. Bennet Leventhal
      These parasites regularly take the stand in Vaccine Court in hopes of preventing sick autistic children from receiving financial compensation for their injuries. When I worked on forensic child abuse cases we had a word for these psychologists and doctors who were paid to testify against children.  I’ll leave that to your imagination.
      It is a free country and these doctors are not breaking the law by making a few bucks on the backs of kids. However, I think their “work” as anti- child professional testifiers has been insufficiently discussed and deserves a good public airing, don’t you?
      Dr. Catherine Lord appears in vaccine court with great regularity. Like Fombonne, Lord appears to relish the opportunity, as a psychologist, to diagnose children she has never met and draw (erroneous and unqualified) conclusions about the cause, onset and severity of their medical disorders. Remind me the next time my son’s GI disease worsens and he loses language to make an appointment with a good child psychologist. Dr. Bennet Leventhal not only professionally testifies against children but also is a paid speaker on the pharmaceutical speaking circuit. Leventhal’s org also accepts huge amounts of money from vaccine makers.
      No one is forced to testify against children in vaccine court. Most doctors and researchers with even the most rudimentary of scruples will refuse such an invitation. But not Dr. Eric Fombonne! He probably leases out a condo near the courthouse as a business tax write off.  It is a wonder he has time for anything else!
      Isn’t it interesting that after all these years of testifying against disabled children, that the tables have turned and Fombonne is now a defendant, charged with serious academic misconduct by his employer, McGill University. Fombonne is under investigation for:
      unlawful access to confidential medical record and blood samples of children in his 2006 “Pediatrics” article. . .
+ Read more: is.gd/aTpAc

     Note: The opinions expressed in COMMENTARY are those of the author and do not necessarily represent the views of the Schafer Autism Report.




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  In This Issue:























































Health-care Reform Bill Passes Both Houses; Affects Autism

RESOURCES

Program Gives Autistic Students Confidence To Join Work Force

NEWS
Children With Autistic Traits Remain Undiagnosed

Best Buy Replaces Electronics Items Stolen From Autism School

PUBLIC HEALTH
Unvaccinated California Children at Center of Measles Outbreak

MEDIA
A Mother's Courage: Talking Back To Autism on HBO April 2

PEOPLE
Kate Winslet Ditches Autism Premiere

Trial Starts Monday For Colodrado Man Accused Of Killing Son

11-Year-Old With Autism Critical After Near Drowning in Arizona

TREATMENT
Specific Carbohydrate Diet Helps Treat Autism

Deep Brain Stimulation Reduces Epileptic Seizures

COMMENTARY
Fombonne, Lord, Leventhal vs. Children with Autism






            

Send your LETTER   








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