Schafer Autism Report


Thursday June 16, 2011                                           Vol. 15 No. 31

Routine Screening for Autism Not Needed, Researchers Say

Immigration Says Son With Asperger’s ‘Inadmissible’ To Canada

Korean Family's Deportation Order May Be Lifted

Flacking for Big Pharma

Measles Returns As Parents Refuse Vaccines

Judge Rules In Favor Of Letting Autistic Boy Take Service Dog To School

Family's Life Unravels With Claims Dad Raped Daughter

Autism Doctor: My Therapy Is Unconventional, But It Works


Routine Screening for Autism Not Needed, Researchers Say

      ScienceDaily — Proposals recommending routine screening of all children for autism gets a thumbs down from researchers at McMaster University.
      In a study in the online edition of the journal Pediatrics, the researchers say there is "not enough sound evidence to support the implementation of a routine population-based screening program for autism."
      Not only are there no good screening tools or effective treatments but there is no evidence yet that routine screening does more good than harm, said Dr. Jan Willem Gorter, a researcher in McMaster's CanChild Centre for Childhood Disability Research and associate professor of pediatrics.
      Contrary to the McMaster researchers' findings, the American Academy of Pediatrics recently recommended that screening for autism be incorporated into routine practice, such as a child's regular physician check-up, regardless of whether a concern has been raised by the parents.
      Autism, or the autism spectrum disorders (ASDs), is a group of serious neurodevelopmental disorder with major, life-altering implications. Its symptoms include differences and disabilities in many areas, including social, communication skills, fine and gross motor skills, and sometimes intellectual skills.
      During the past three decades, the prevalence of autism has risen dramatically to 11 cases per 1,000 school-aged children from 0.8 cases per 1,000. Reasons for this increase vary: improved detection, changes in diagnosing the disorder or an actual increase. The disorder is more common in males with a 4:1 male-to-female ratio.
      For the study, McMaster researchers conducted a literature search to assess the effectiveness of community screening programs for autism.
      "None of the autism screening tests currently available has been shown to be able to fulfill the properties of accuracy, namely high sensitivity, high specificity, and high predictive value (proportion of patients with positive test results who are diagnosed correctly) in a population-wide screening program," researchers said.
      Gorter said that unlike breast cancer screening, no autism screening programs have been studied in randomized controlled trials. "There is no solid evidence on which to base the recommendations of the American Academy of Pediatrics."
      "None of the autism screening tests for the general population that we have today have proven accuracy," said Gorter. "That is, they aren't good enough to accurately detect children who have autism or to accurately detect those who don't."
      Gorter said the study is a "call for action."
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• • •

Immigration Says Son With Asperger’s ‘Inadmissible’ To Canada


    University of Toronto professor Thomas Reynolds, middle, and his sons Chris, left, and Evan, right have applied to become permanent residents. But Chris, who has Asperger Syndrome, a mild form of autism, is deemed medically inadmissible.

      By Vince Talotta/Toronto Star Nicholas Keung Immigration Reporter

      Chris Reynolds wants to stay in Canada with his dad and brother. But the only way his family’s application for permanent residency will be approved is if he’s not on it.
      Immigration officials say Reynolds, 20, will be too big a drain on the health care system because he has Asperger and Tourette syndromes. He has been deemed “inadmissible."
      His family is torn: Should they leave Canada or leave Chris off their application?
      “The end verdict is a judgment of worthlessness,” says his father, Tom Reynolds, who is a professor at the University of Toronto. “Chris has a lot of potential to contribute many gifts to Canada."
      Chris, like other youth his age, is tethered to his PlayStation 3 and wired to the Internet 24/7.
      “I am a homebody,” he said with a sheepish smile. “I am not good at starting a conversation and I get bad anxiety sitting in a car for too long."
      Asperger’s is a high functioning form of autism, and Tourette’s syndrome is a condition associated with motor and verbal ticks.
      Born in Nashville, Tenn., Chris, an American citizen, has lived in Toronto since 2007, with his expatriate father, a tenured theology professor at the University of Toronto’s Emmanuel College, and younger brother, Evan, 17, who is still in high school — both here on their father’s work permit. Shortly after arriving in Toronto, the family applied to immigrate from within Canada.
      An early medical assessment by Citizenship and Immigration Canada concluded that Chris would place an “excessive demand” on health and social services, and hinder the family’s chances of being accepted.
      Officials never met with Chris but deemed him “medically inadmissible” and estimated his care could cost Canadians $7,000 a year.
      The Reynolds’ story comes on the heel of immigration’s threat to deport a South Korean family from New Brunswick last week. That story attracted national attention and ultimately forced the government to issue a reprieve. The Maeng family arrived Moncton in 2003 on a work permits and was asked to leave because their 14-year-old son has autism and epilepsy.
      Both families are among the 0.2 per cent of permanent residency applicants a year who are deemed inadmissible to Canada for fear they would pose an excessive demand on the country’s health care system.
      Mark MacLean, minister of Toronto’s St. Andrew’s United Church, has known the Reynoldses since their arrival and was surprised when Chris revealed his medical conditions.
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• • •

Korean Family's Deportation Order May Be Lifted


      The immigration ordeal of a South Korean family facing deportation because their youngest son is autistic and epileptic may be almost over, the Conservative MP for Moncton-Riverview-Dieppe said Thursday.
      Robert Goguen said the federal government needed a more detailed letter from the province about the family, and once that's dealt with the deportation order will be lifted.
      On Wednesday, the federal government received a letter from the province promising to provide health, education and social services for the Maeng family as long as they're granted permanent or temporary resident status.
      "There's been a real show of support for the family and for all the right reasons. They're very productive and look they're an integral part of our society in Moncton and that's exactly where we want to keep them," Goguen said Thursday.
      "So I'm very pleased for them and, listen, if we would have had to put 10 times as much effort, we'd have done the same thing. I'm just glad it's coming to a halt before even close to this deadline that was looming on June 30."
      Last week, the federal Department of Citizenship and Immigration told the Maeng family, which has been living in Moncton since 2003, they must leave Canada by the end of the month.
      The federal government argued that because Sung-Joo Maeng, 15, is epileptic and autistic the costs of his care would be too expensive.
      Social Development Minister Sue Stultz presented a letter to the Maeng family Wednesday with a guarantee the provincial government will cover the health-care costs for their son.
      Nicole Druckman, the family's lawyer, said the provincial government's support will help the family's bid to stay in the country.
      "Knowing that that's the case and knowing there's just been an oversight tells me that once the federal government reads this letter, we are very hopeful that they will grant our clients the ability to stay," Druckman said.
      Druckman said she hopes to have news on the Maeng family's future by the weekend.
      But she said they are ready to take the case to court if immigration officials don't change their minds.
      Meanwhile, a Moncton woman who has been heading up the community support for the Maeng family said she is thrilled to hear the provincial government has promised to pay health care costs for the family.
      Mary Sullivan said the rally she's planned for this weekend to support the family will go ahead hopefully as a celebration.
      "I think this means that it will be a short fight. I think it shows the federal government that the whole province of New Brunswick is behind this family and I think it means that they're going to be able to stay, I hope so at least," Sullivan said.
      Sullivan said she is proud the provincial government came together so quickly to make a decision to support the Maeng family.
      Sung-Joo Maeng was diagnosed with autism and epilepsy at age five.
      His father, Tae-Shik Maeng, and his mother, Hee-Eun Jang, moved the family to Canada with the hope of getting help to treat their son's illnesses. They have another son, Jung-Joo Maeng, who is studying science at Dalhousie University in Halifax.
      The family has owned and operated Moncton's Main Stop Oriental Market on West Main Street since 2003.
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• • •


Flacking for Big Pharma

Drugmakers don’t just compromise doctors; they also undermine top medical journals and skew medical research

      By Harriet Washington

      “Drug Makers Cut Out Goodies for Doctors” and “Drugmakers Pulling Plug on Free Pens, Mugs & Pads” read headlines in The New York Times and The Wall Street Journal Health Blog at the end of 2008 after, in a very public act of contrition, 38 members of the pharmaceutical industry vowed to cease bestowing on prescribing physicians goodies such as pens, mugs, and other tchotchkes branded with their names. Some physicians and ethicists had long expressed concern about the “relationship of reciprocity” that even a pizza or cheap mug can establish between doctors and drugmakers, and branded trinkets also send a message to the patient, who might reason that Gardasil must be a good drug if her doctor wields a reflex hammer inscribed with its name. But while the popular press celebrated this sudden attack of nanoconscience and while we still gravely debate whether physicians’ loyalties can really be bought for a disposable pen or a free lunch, the $310 billion pharmaceutical industry quietly buys something far more influential: the contents of medical journals and, all too often, the trajectory of medical research itself.
      How can this be? Flimsy plastic pens that scream the virtues of Vioxx and articles published in the pages of The New England Journal of Medicine would seem to mark the two poles of medical influence. Scarcely any doctor admits to being influenced by the former; every doctor boasts of being guided by the latter. In fact, medical-journal articles are widely embraced as irreproachable bastions of disinterested scientific evaluation and as antidotes to the long fiscal arm of pharmaceutical-industry influence.
      And yet, “All journals are bought—or at least cleverly used—by the pharmaceutical industry,” says Richard Smith, former editor of the British Medical Journal, who now sits on the board of Public Library of Science (PLoS), a nonprofit open-access group publishing scientific journals that eschew corporate financing and are freely available online to the public.
      Big Pharma, as the top tier of the industry is known, starts modestly, inserting the thin edge of its wedge by advertising copiously—and often inaccurately—in medical journals. In 1981, concerned officials at the Food and Drug Administration recognized the educational nature of pharmaceutical advertising by establishing explicit standards for medical-journal ads that mandate “true statements relating to side effects, contraindications, and effectiveness,” and a “fair balance” of statements about medication risks and benefits.
      In 1992, the editors of the esteemed Annals of Internal Medicine decided to gauge how well their own advertisements met that standard. They tested 109 advertisements along with the references cited by those ads, sending each ad to three expert reviewers who evaluated them in light of the FDA standards. Fifty-seven percent of the ads were judged to have no educational value, 40 percent failed the fair-balance test, and 44 percent, the reviewers believed, would result in improper prescribing. Overall, reviewers would have recommended against publication of 28 percent of the advertisements, as the Annals revealed in its published report.
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• • •

Measles Returns As Parents Refuse Vaccines

      By Liz Szabo, USA Today News

      Landon Lewis, 4, was living in a Minneapolis homeless shelter when he fell ill, first with a fever of 104 degrees, then with a red rash on his forehead.
      It took two visits to a doctor to diagnose a disease clinic staff hadn’t seen in years: measles.
      The rash spread into his mouth and throat, so swallowing was torture. He began vomiting and developed a cough that nearly choked him. He was rushed to the emergency room and hospitalized for five days.
      “Seeing a child in that predicament really hurt,” says his mother, Katrina Lewis, 27. “He can’t eat, he can’t sleep, he’s bad all around, and you can’t do anything about it."
      Landon is one of at least 152 cases of measles diagnosed in the USA so far this year — twice the number seen in a typical year, and the biggest outbreak in 15 years, says the Centers for Disease Control and Prevention. Half of patients have had to be hospitalized.
      For the doctors and nurses caring for patients like Landon, the return of vaccine-preventable diseases such as measles a viral illness that once killed 3,000 to 5,000 Americans a year is both frightening and all too predictable.
      “Measles can be like a canary in a coal mine,” says the CDC’s Gregory Wallace. “If there are any issues with vaccine coverage, it can first be apparent with measles."
      In the past three years, doctors also have seen outbreaks of other vaccine-preventable diseases such as mumps, whooping cough and a life-threatening bacterial infection called Hib. All can be deadly.
      Although overall vaccine coverage remains high, 40% of parents say they have deliberately skipped or delayed a shot for their children.
      In some ways, vaccines are a victim of their own success. Today’s parents have never seen the diseases that terrified their grandparents, says Paul Offit, chief of infectious disease at Children’s Hospital of Philadelphia. “We’ve not only eliminated these diseases; we’ve eliminated the memory of these diseases,” Offit says.
      Parents who decline vaccines may not realize that they’re gambling with the lives of not just their kids but all the children around them, says Patsy Stinchfield, director of pediatric infectious disease at Children’s Hospitals and Clinics of Minnesota, where Landon was treated. Measles can kill by causing pneumonia, brain inflammation and other complications, Stinchfield says. Babies too young to be vaccinated and people with compromised immune systems, such as those with cancer, are especially vulnerable. They rely on others around them to keep the virus out of circulation, a phenomenon known as “herd immunity,” which protects even those who can’t be vaccinated, she says.
      And Offit notes that measles — which killed 3,000 to 5,000 Americans a year in in the pre-vaccine days —continues to kill. More than 164,000 people died of the disease in 2008, says the World Health Organization.
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• • •


Judge Rules In Favor Of Letting Autistic Boy Take Service Dog To School

Autistic boy's parents sued after the Cypress School District tried to keep the animal out. They've won a preliminary injunction, but a trial is expected next year.

Caleb Ciriacks, 7, who is severely autistic, with his service dog Eddy, who kept Caleb from running off and knows to intervene when the boy is getting anxious. – LA Times.

      By Victoria Kim, Los Angeles Times.

      By the time summer school starts in early July, Caleb will probably walk into class with a golden retriever at his side.
      Caleb Ciriacks is a 7-year-old severely autistic boy who for the most part doesn't speak. He shrieks and paces when he gets anxious, and on occasion he pinches and scratches others. Eddy is Caleb's service dog, tethered to the boy by a red strap. The dog keeps Caleb from running off into crowds or darting into traffic, and he knows to intervene when the boy starts to feel anxious.
       When Caleb entered first grade last year, school officials in Cypress refused to let him take Eddy to school. Caleb's parents sued in federal court, alleging that the district was discriminating against their son based on his disability.
      On Tuesday, a federal judge in Santa Ana ruled that Frank Vessels Elementary School must let Caleb take Eddy to school and that the boy was probably a victim of discrimination. U.S. Department of Justice attorneys filed a "statement of interest" in the case, saying the school district was violating the boy's civil rights and misinterpreting the Americans With Disabilities Act.
      The district had argued in court papers that Eddy does not qualify as a service dog under federal statutes, and that his presence could disrupt school activities and be burdensome for staff. Attorneys for the school district also said the dog could undermine Caleb's independence and self-control.
      U.S. District Judge Andrew Guilford granted a preliminary injunction in favor of the student, finding that keeping the boy and the dog apart during school hours could diminish their bond and disrupt their relationship. Not allowing the dog to accompany Caleb to school "could cause [Caleb] serious harm in his ability to enjoy any of the benefits that Eddy was meant to provide," he wrote.
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• • •


Family's Life Unravels With Claims Dad Raped Daughter

Six part series by the Detroit Free Press.

      Julian Wendrow paced in his cell.
      Three steps one way. Turn. Three steps the other way.
      Four to eight hours a day, he walked back and forth in his windowless cell in the Oakland County Jail, a first-time prisoner accused of raping his autistic daughter.
      Wendrow spent 74 of his 80 days in jail in the one-man cell. He saw almost none of the winter of 2008, the season that would change the West Bloomfield father's life.
      He and his wife, Thal Wendrow, were seemingly ordinary middle-class parents deeply involved in their children's lives -- until the accusations prompted a prosecution that a federal judge later described as a "runaway train."
      Thal spent five days in jail, accused of ignoring the abuse. Their children -- a severely disabled teen girl and a mildly autistic boy -- were put in separate juvenile homes and kept apart from their parents for 106 days.
      Beginning today, Free Press staff writers L.L. Brasier and John Wisely go behind the scenes of the case. The parents who wanted to believe in miracles after a school aide was assigned to help their mute, autistic daughter communicate. The prosecutors who set out to protect a child. The nightmare that engulfed the Wendrow family.
      The ordeal didn't end when it was clear that the girl wasn't communicating, after all. It didn't end when a sexual assault exam found no proof of abuse. And it didn't end when a prosecution witness insisted the abuse never happened.
      Through hours of interviews and thousands of pages of never-disclosed testimony, the Free Press over the next six days examines how the case developed -- and how it collapsed.
      Chapter 1: The allegations
      The ordeal that would devastate the lives of Julian and Thal Wendrow began in a most mundane way: The message light on their home phone was blinking.
      Julian Wendrow, who owned a painting business, had been out running errands. His wife, Thal Wendrow, a research attorney for a local judge, was at work. Their children were at school.
      It was a cold November afternoon in 2007.
      The voice mail was from a state social worker, who had an urgent message for them.
      Julian Wendrow called back.
      Disturbing allegations had been made, the social worker told him: Your disabled daughter, who was at Walled Lake Central High School, claims you raped her over the weekend. That you've been raping her for years.
      Wendrow was stunned. His 14-year-old daughter -- mute and autistic -- communicated only through a technique called facilitated communication (FC), a typing method in which an aide guided her hand.
      Surely, he thought, there had been some terrible mistake. The typing went awry. It could all be easily corrected, he figured.
      The family had airline tickets for South Africa, his native country, and was set to leave in 12 days. His daughter came home on the school bus that afternoon, along with her 13-year-old brother. Wendrow said nothing to them, but called his wife at work. She came home.
      With the children out of the room, the parents talked quietly.
      They came up with a plan -- one they hoped would end the ordeal the next day.
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• • •


Autism Doctor: My Therapy Is Unconventional, But It Works

Dr. Mark Geier, who is fighting the state's suspension of his license, says his practice should be judged on the results

       By Mark Geier 

      If there's a single statement that everyone who works in the field of autism can agree on, it's that there is so much that we still don't know.
      Medical professionals can't even definitively say why more children are being diagnosed as having autism or similar developmental delays, much less agree on the best courses of treatment and therapy. Yet all of us who work with families of children with autism can't help but be affected by the emotions of desperate parents.
       This month, I go before an administrative law judge to appeal a decision by the Maryland Board of Physicians to summarily suspend my medical license related to the treatment of children with autism. I wish that I was permitted to respond to the various allegations in detail, but the board's privacy restrictions make that impossible. (For the record, I have tried to waive my privacy rights and asked that my appeal be opened to the public, but have thus far been denied.)
      In my more than 30 years of practice, since completing my medical training at the Johns Hopkins Hospital, I have spent thousands of hours talking to the families of children with autism — evaluating their condition, publishing research in peer-reviewed journals and trying to add to the medical profession's broad base of knowledge about autism. I understand that not everyone agrees with some of what our research has concluded, just as I don't necessarily agree with what other physicians have written. In the end, finding answers through continued research is how science moves forward.
      Over the years, our work has helped to uncover that a significant number of children with autism have remarkably high levels of male hormones in their blood. We have found that many of these children with high male hormone levels display behaviors that are among the most challenging to deal with in autism, such as unprovoked and extreme violence, to themselves and the people around them, and an inability to sit still for beyond a few seconds. These behaviors make it all-but-impossible to engage children in the more well-known forms of behavioral therapy.
      In young children without autism, these levels of hormones prompt a diagnosis of precocious puberty, and physicians often use medication to reduce the hormone levels to those that are more appropriate for the age group. We have begun using a similar approach for children with autism who display high levels of male hormones, prescribing a drug called Lupron. The drug — supported for use in children by the American Academy of Pediatrics — suppresses the male hormone levels without leaving any lasting changes to the body's ability to manufacture those hormones in the future.
      For a large percentage of the hundreds of children we have treated using this therapy, the results have been tremendous. Countless parents have told us that their families' lives have been transformed by the use of Lupron — particularly because the alternative for many of these children has been either the off-label use of dangerous anti-psychotic medications or institutionalization.
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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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