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Live blogging the autism hearing

May 20th, 2014 · 11 Comments · Easy marks, Research

8:07 am – They dropped the epidemic reference. The hearing is now called “Examining the federal response to autism spectrum disorders.” Rep. John Mica (R-FL) is the chair, instead of Rep. Darrell Issa (R-Arson).

The purpose of the hearing is to examine federal spending on autism related research and services.

Congressman Gerry Connolly (D-VA) plugs the Affordable Care Act – “Autism is no longer treated as a pre-existing condition.”  He’s recapping the history and purpose of the IACC.

Rep. Bill Posey, R-FL, gives a shout out to SAFE MINDS, the anti-vaccine group. Now he is talking about vaccine safety. He wants a study to compare health outcomes of vaccinated and unvaccinated children. “The science is overwhelming” that there is an environomental component to “the skyrocketing rate of autism.”

He says the IACC is obstructing further research into the environmental causes of autism. “The NIH is ignoring what parents have known for many years.”

Mica introduces the panel:  Dr. Tom Insel, dirctor of the NIH; Michael Yudin, Acting Assistant Secretary, Office of Special Education and Rehabilitative Services, Dept. of Ed; and Marsha Crosse, Health Care Director from the Government Accountability Office.

Insel starts off. Things are moving fast in autism research. 2,000 people from 35 countries recently met at the IMFAR conference in Atlanta.

“The good news is the science is moving quickly, and the investments we’ve made will soon mitigate” the costs of ASDs.

Yudin talks about IDEA, which included autism in 1994. “More than 30 years of research shows students with disabilities do better when held to high expectations.”

Marsha Crosse says 12 federal agencies were awarded $1.4 billion between 2009 and 2012. The combating autism act coordinates that spending. She says there is a potential for duplicative efforts, and better coordination is needed between researching agencies.

Insel: “We need more people working on the same problems, using the same techniques, to get an many answers as possible.” That’s how science works.

“What you’re seeing as a problem (duplication of efforts) we’re seeing as an essential need.”

insel

Insel says the “potential” for duplication is not the same as “actual cases of duplication.”

Connolly goes after the GAO for hindering autism research. “I think it is irresponsible for the GAO” to suggest that 84% of research projects have the potential for duplication.” Crosse doesn’t have the scientific qualifications to make the statement.

Connolly has a better grasp of the scientific method that your average congress critter.

Rep. Rob Woodall (R-GA), defends the GAO reports.

Posey again. “Some folks believe the government has made a strategic error” in focusing on genetics rather than environment. He is reading from a prepared statement, possibly from SAFE MINDS.

Insel says genomics is a tool, “an engine for discovery”, to find mechanisms for disease. He’s schooling Posey.

Screen Shot 2014-05-20 at 9.39.32 AM

Posey: “Please don’t  mistake me for someone who wants to abandon genomic research.”

Posey asks about a chelation study that was proposed several years ago. Insel says it didn’t pass IRB approval.

Now Posey asks about a vaxed v. unvaxed study. “Where do you come down on that?”

Insel says there have been many studies looking at the role of vaccines in autism. “There is no evidence there.” Talk about duplicative efforts.

Now Posey brings up Poul Thorsen. How embarrassing for the congressman from Florida.

Posey is getting testy now talking about vax v unvax studies. “The international scumbag Poul Thorsen.” Posey thinks that every vaccine/autism study has a Thorsen connection!

“One decent study can remove the thimerosal question once and for all.”

 

 

 

 

 

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Chili’s cancels benefit for anti-vaccine group

April 7th, 2014 · 6 Comments · Kudos

 

A spokesperson for Chili’s Grill and Bar announced Sunday that Monday’s Give Back Event which would have benefited an anti-vaccine group has been cancelled. Below is the statement from Brinker International, the restaurant’s parent corporation.

Statement from Chili’s Grill & Bar

“Chili’s Grill & Bar is committed to giving back to the communities in which our guests live and work through local and national Give Back Events. While we remain committed to supporting the children and families affected by autism, we are canceling Monday’s Give Back Event based on the feedback we heard from our guests. We believe autism awareness continues to be an important cause to our guests and team members, and we will find another way to support this worthy effort in the future with again our sole intention being to help families affected by autism. At Chili’s, we want to make every guest feel special and we thank all of our loyal guests for your thoughtful questions and comments.”

The National Autism Association has responded with a curious mix of humility and non-apology.

Thank you to all of our supporters, and thank you to Chili’s for taking a chance on us. Though NAA has changed our mission and efforts in recent years to focus on autism safety, namely wandering prevention, controversial views about vaccines remained on our website. Because of guest feedback about these views, Chili’s has opted to cancel tomorrow’s event. We respect their decision and ask everyone to please speak words of love and kindness. NAA has evolved as our children’s needs have evolved. Our Big Red Safety Box Program very much helps protect children and adults with autism from wandering-related emergencies. We will continue to provide boxes as funding becomes available. Again, thank you for your support and your positive messages that represent our entire autism community.

? Please note: Chili’s leadership team has made the difficult decision to cancel Monday’s Give Back Event. Chili’s remains committed to supporting the children and families affected by autism and so this decision was not made lightly. As you know, Chili’s wants to make every Guest feel special and that includes listening to feedback from their Guests about this event.”

 

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Chilis Grill and Bar serving vaccine rejectionism

April 4th, 2014 · 6 Comments · Facepalm

Chilis Grill and Bar, which operates over 1200 restaurants, refuses to explain its plan to donate 10% of its sales on April 7 to the National Autism Association,  a well-known anti-vaccine advocacy group.

“Right now we are coming up with what we are going to say about it,” a corporate spokesperson told AutismNewsBeat. She promised to call back when information becomes available.

The chain is owned by Brinker International, which also operates Maggiano Little Italy. Revenue for 2012 was reportedly $2.8 billion.

Chili’s, a Texas corporation, has been operating restaurants for 37 years, with locations in 31 foreign countries and two U.S. territories. According to Brinker’s 2012 annual report, average annual sales volume per Chili’s restaurant in 2012 was $3 million. Ten percent of one day’s sales, spread among 1,249 locations, could net nearly $1 million.

Chili’s largesse has not gone unnoticed. “In honor of National Autism Awareness Month, Chili’s is planning to donate 10% of customers’ checks on April 7 to the National Autism Association, a charity with controversial views about vaccinations,” notes Business Insider. “While companies are free to support organizations they wish, it’s worth noting the damage to come from lobbying by anti-vaccine groups.”

Chilis announced its “Give Back Event” in an April 2 press release that cited a “broken cheeseburger” as the inspiration for the company’s focus on autism.

The story began at a Chili’s in Midvale, Utah where a server presented a little girl with her Kid’s Cheeseburger cut in half. Unbeknownst to the server, however, Chili’s standard presentation of a sliced cheeseburger signified the burger was “broken” to the guest. The server quickly had a new dish made and while the deed was seemingly small for the restaurant team, it made a profound impact on the child and her family as she joyfully kissed the “fixed” cheeseburger.

A family member’s Facebook post thanking the restaurant for their care in the matter garnered attention from national media and thousands of Chili’s fans. Since then, the server and young girl’s friendship has continued and inspired the brand’s recent efforts to support the autism community. On Monday, April 7 as part of National Autism Awareness Month, participating Chili’s restaurants nationwide will host a Give Back Event, donating 10 percent of qualifying guest checks to the National Autism Association (NAA).

“The ‘Broken Cheeseburger’ story shines a light on the caring spirit and actions of Chili’s team members. These moments happen in our restaurants every day, at every table, at every Chili’s across the country,” said Krista Gibson, chief marketing officer for Chili’s Grill & Bar. “We are proud to support the National Autism Association while celebrating one of the brand’s favorite stories of hospitality during nationally recognized Autism Awareness Month.”

The press release further describes the NAA as “a nonprofit organization providing research funding, advocacy, support and education for the autism community with the goal of helping all affected by the neurodevelopmental disorder reach their full potential.”

Backlash against Chilis’ support of NAA clearly caught the company off guard. It took nearly 48 hours for the corporation to issue a statement explaining that “The intent of this fundraiser was not to express a view on this matter, but rather to support the families affected by autism.”

The NAA regularly invites discredited medical professionals to speak at its annual conferences, including Mr. Andrew Wakesfield, whose fraudulent 1998 Lancet article caused vaccination rates to plummet in Europe and the US. Another speaker was Dr. Anju Usman who, in 2006, referred a five-year-old autistic boy to a chelationist, Dr. Roy Kerry. The boy later died in Kerry’s care, as the boy’s mother helplessly watched.

 UPDATE: Chilis released the following statement.

When choosing a charitable partner for our Give Back Events, both locally and nationally, we are committed to supporting organizations dedicated to helping children and their families. The intent of this fundraiser was not to express a view on this matter, but rather to support the families affected by autism. Our choice to partner with the National Autism Association was based on the percentage of donations that would go directly to providing financial assistance to families and supporting programs that aid the development and safety of children with autism.

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CDC reports 1:68 prevalence for
autism spectrum disorders

March 27th, 2014 · 1 Comment · Research

The Centers for Disease Control and Prevention estimates that 1 in 68 children (or 14.7 per 1,000 eight-year-olds) in multiple communities in the United States has been identified with autism spectrum disorder (ASD).  This new estimate is roughly 30 percent higher than previous estimates reported in 2012 of 1 in 88 children (11.3 per 1,000 eight year olds) being identified with an autism spectrum disorder.  The number of children identified with ASD ranged from 1 in 175 children in Alabama to 1 in 45 children in New Jersey.

This is the sixth survey reported from the CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network, an active surveillance system set up in 2000. In 2010, it gathered medical and school records for eight year olds from 11 ADDM sites in the United States. Surveillance is conducted in two phases. The first consists of screening evaluations performed by professional providers in the pediatric health clinics, specialized programs, and public schools.  In the second phase, records are reviewed by trained clinicians to determine ASD case status. A child meets case definition for ASD if a comprehensive evaluation ofhat child is consistent with the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR) autistic disorder, pervasive developmental disorder–not otherwise specified (including atypical autism), or Asperger disorder.

The upward trend in prevalence is consistent with recent studies conducted in the US and Canada. It can be attributed in large part to a combination of better detection methods, increased training of medical professionals, diagnostic subsition, and greater public awareness of the disorder.

Only 80% of all children identified as autistic had previous eligibility for autism special education services, or a DSM-IV diagnosis. That percentage is nearly the same as for the last two ADDM surveys, which indicates a large population of autistic children who are either undiagnosed or misdiagnosed.

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To reporters on the eve of Autism Awareness Month

March 24th, 2014 · 11 Comments · Critical thinking, Research

April is Autism Awareness Month, when the words “Somebody get me an autism story” can be heard in newsrooms across the country. Some reporters will answer the call with factually accurate, nuanced, informative pieces that add value to the public’s store of knowledge. Others will just phone in their reports, literally and figuratively. And a few will embarrass themselves.

sick-tpwrtrIn the six years that I’ve been monitoring America’s anti-vaccine movement, there’s been a sea change in how news and entertainment media have given voice to anti-vaccine advocates. There was a time when credulous reporters and editors could be tricked into balancing scientific fact with unconfirmed anecdote. By 2004, nearly every major news media outlet in the US had fallen for the ruse, reporting, for example, that the MMR vaccine “might cause autism.” The lure of angry parents, defensive doctors, and tongue-tied CDC officials were just too tempting.

The idea never made much sense to vaccine researchers, but editors were too busy following the controversy to notice. They saw Andrew Wakefield, a British gastroenterologist ,whose 1998 Lancet article jump-started the moribund US anti-vaccine movement. In 2000, 60 Minutes broadcast a parent’s impassioned speech against the MMR vaccine, followed by Wakefield’s opinion that the vaccine was not safe. In 2004, a more serious journalist, Brian Deer, uncovered Wakefield’s real story: crooked trial lawyers in the UK had paid him hundreds of thousands of pounds to fabricate a connection between the MMR and autism. The Lancet has since retracted Wakefield’s article, and England’s medical board revoked his license three years ago. These days, among major media outlets, only Fox News can be counted on to give anti-vaccine propaganda the time of day. Otherwise, the major networks and newspapers long ago learned their lesson – there is no “other side” to the anti-vaccine movement. Vaccines don’t cause autism, and the consequences of not vaccinating are far, far worse than the one in a million chance that a child might suffer serious harm from a vaccine.

But news media have, for the most part, wised up, thanks to Wakefield’s perfidy and downfall. His Lancet article loaded the anti-vaccine movement’s Beretta, but reporters gleefully squeezed the trigger, over and over. That stopped, for the most part, when Wakefield lost his UK medical license and subsequently fled to America to spend me time with his fellow grifters in the autism cure industry.

Occasionally a major news outlet, or a media luminary, suffers a relapse. We saw that last fall when Katie Couric let her guests make up their own facts about the HPV vaccine, which saves lives and has an excellent safety record. And Fox News can always be counted on to fall off the wagon, recently reporting, for instance, that “autism disorders are greatly linked with environmental factors.”

Bob Woodward, whose reporting rightfully drove a crooked politician from the White House, once outlined three things that a responsible journalist does when covering a story. They are worth reviewing.

First, check your sources. Is the man telling you that vaccines cause autism a bona fide researcher with relevant training and experience, or a disgraced gastroenterologist driven from his native country? Hollywood celebrities can reliably tell you how much fun George Clooney’s pool house is, but aren’t reliable when it comes to matters of toxicology, immunology, pediatric neurology and other words ending with -ology.

Don’t assume that just because somebody has an MD or PhD after her name means she’s an expert on autism. A PhD chemist from Kentucky once tried to sell an industrial chelating agent as a diet supplement for autistic children, until the FDA shut him down. Apparently, diet supplements must be edible. The autism cure industry is rife with MDs who claim they are treating and “recovering” children with chemical castration drugs, stem cell transplants, hyperbaric oxygen chambers, anti-fungals and, I kid you not, bleach enemas. Jenny McCarthy’s annual trade fair and revival meeting, AutismOne, promotes all of these “treatments” and more.

Checking sources “means checking everything, talking to half a dozen or even a dozen people for a day story. If it’s something longer, you want to totally surround and saturate the subject,” says Woodward. That’s good advice whether you’re covering the Pentagon, the FDA, or autism.

Second, you need documentation. “I have not really ever seen a story in a newspaper or on television or even on radio,” says Woodward, “that couldn’t be enhanced with some sort of documentation that would support or add more detail to what the story is about.”

On the autism news beat, the best documentation are peer-reviewed studies. This means the study has been published in a respectable scientific journal with a “high impact factor.” Look it up. Be aware of “pay to play” journals that will publish just about anything for a price. Despite its respectable name, The Journal of American Physicians and Surgeons is one such pay to play journal. The ironically-named Medical Veritas is another. Disgraced British gastroenterologist Mr. Andrew Wakefield started his own journal, Autism Insights, to publish articles that might exonerate his fraud. It didn’t work.

If somebody tells you parents have recovered their autistic children with restrictive diets and fecal transplants (we’re not making that up), ask for documentation. Are there clinical trials? Where were the case studies published? If your source tells you the drug companies are blocking the studies because they can’t make money from poop, then you’re hooked yourself a conspiracy theorist with possible mommy issues.

Third,  check information first hand. Or as Woodward puts it: “Get your ass out of your chair and get over there.”  If your source is legitimate, you should be able to verify what she’s telling you. A staple of Autism Awareness Month reporting is “Somebody is helping people with autism” story. It could be a school district that just snagged a grant to help educate children with developmental delay.  Or maybe a helper dog is making life better for a child with autism. These stories give us hope, and are a welcome relief from the doom and gloom crowd who characterize autism, and thus some children and adults, as train wrecks and lost souls.

But there is a more troubling side to the “somebody is helping” narrative. That’s when a source tells you she is “recovering children” with restrictive diets, off-label drug use, and worse. Health care fraud is a $100 billion a year racket, and the bad guys know about autism. The illegitimate autism cure industry is a target-rich environment, but the only way you’ll learn about it is to check your information first hand.

Keep your stories simple and focused. Unless you are familiar with the autism news beat, the more you venture into the weeds, the more likely you are to leave your readers with the wrong impression. Keep these facts in mind:

  • There is no evidence for an autism epidemic. It’s tempting to write about autism rates “skyrocketing”, “mushrooming” and “exploding”, or about the coming “tsunami” of young autistic adults. But words like “rate” and “epidemic” have specific meanings. If you want to compare, say, the change in the number of children receiving autism diagnoses over the last 20 years, then talk to an epidemiologist about the difference between prevalence and incidence. Don’t just assume.
  • Autism covers a wide variety of behaviors, from very severe to just quirky. What connects these individuals is the need for support and accommodation. That’s your story. What is the school, workplace, family, etc. doing to help these individuals become productive members of society? And how are families adjusting and coping with the disorder? Autism is not a death sentence. It’s developmental delay, not stasis. These individuals continue to grow and learn and adapt, albeit at their own pace.

Above all, beware of your source’s agenda. There is no credible evidence that autism is a medical condition. “We cannot cure what is not a sickness,” says former Miss America contestant Alexis Wineman, who has autism. “But we can begin to understand autism, and help those with the condition to unlock the potential that lies within all of us.” That’s your story, too. If somebody tells you autism causes brain inflammation, is caused by a leaky gut, or can be fixed by a chiropractor, ask for proof. And don’t hold your breath while you wait.

 

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The Weather Channel rains on anti-vaccine parade

March 1st, 2014 · No Comments · Critical thinking, Narrative

Add The Weather Channel to the growing list of media outlets gunning for the anti-vaccine movement.  In “The Dangerous History of Anti-Vaccine Conspiracies”, Jeffrey Kopman forgoes false balance, and instead calls out the fraud, paranoia, and general scientific illiteracy of a movement that recklessly endangers public health. The money quote:

Part of [the movement’s continuation] comes from not fully understanding the science,” said Paul Spearman, MD. “When someone is maybe not well educated in the science, they can latch onto internet based theories of what is going on [that] say the scientific community is trying to mislead you.”

“The ‘conspiracy theory’ that vaccine manufacturers are hiding the truth about MMR and autism is fuelled by parents’ need to know what is causing autism, despite the fact that no large study has replicated Wakefield’s findings,” said Margaret Spoelstra, executive director of Autism Ontario, in a 2010 article published in the journal CMAJ.

The scientific community refers to this type of reaction as “confirmation bias.”

Essentially, vaccines are used as a scapegoat — an explanation for the not yet explainable. Parents believe that vaccines cause autism, and seek out evidence to confirm the idea, often leading to rationalizations that aren’t actually true.

Kopman also fingers the mendacious National Vaccine Information Center and Jenny McCarthy’s Generation Rescue as major purveyors of anti-vaccine propaganda.

Even though several studies have debunked the retracted 1998 Wakefield study, the anti-vaccine movement clings to anecdotal evidence and the logical fallacy that correlation implies causation. For example, the National Vaccine Information Center, an organization dedicated to preventing vaccine injuries through public education states on their website, “At the heart of the debate stand a few courageous physicians whose independent, multi-disciplinary approach to investigating the possible biological mechanisms of vaccine-induced autism is serving as a counterweight to the steadfast denials by infectious disease specialists and government health officials defending current mass vaccination policies.”

The organization — which is linked to Generation Rescue, Jenny McCarthy’s own vaccination awareness organization — also cites a few prominent stories of parents whose children developed health problems after receiving a vaccine.

Can the Cooking Channel be far behind?

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Evan’s grandmother performs this
Friday for CSU autism program

January 14th, 2014 · 1 Comment · Kudos, Narrative

You might recognize Joyce Bulifant for her character Marie Slaughter, Murray’s wife, on the Mary Tyler Moore show. Or you might know her as grandmother to Evan Asher,  Jenny McCarthy’s 11-year-old son.

Bulifant and her husband, actor Roger Perry, also advocate for autism research and education. On Friday, Jan. 17, the couple will perform “I Do, I Do” at the Indian Wells Theater on the campus of the University of California at San Bernardino, with proceeds from the one-night-only performance to benefit the CSUSB autism program.

Joyce Bulifant and Roger Perry

“I Do! I Do!” is an award-winning musical, based on the Jan de Hartog play, “The Fourposter.” The two- character story spans 50 years, from 1895 to 1945, as it focuses on the ups and downs experienced by Agnes and Michael Snow throughout their marriage.

Tickets are $50, which includes parking. A special post-performance reception with admission and parking is $100. Tickets can be purchased by calling the Indian Wells Theater Box Office at (760) 341-6909.

“I Do! I Do!” is an award-winning musical, based on the Jan de Hartog play, “The Fourposter.” The two-character story spans 50 years, from 1895 to 1945, as it focuses on the ups and downs experienced by Agnes and Michael Snow throughout their marriage.

Bulifant has guest starred in numerous television programs. She has been described as “naturally funny,” appearing in the movie “Airplane!” and as David Spade’s mother on “Just Shoot Me!” in addition to being a guest panelist on numerous game shows.

Bulifant has for many years been actively involved in raising funds for numerous child abuse charities. She and husband Roger Perry founded The River Bridge in Colorado for abused children. Bulifant is also the executive vice president of The Dyslexia Foundation.

Perry is an American film and television actor whose career began in the late 1950s. He has appeared on numerous American television series from the 1950s through the 1980s. One of his best-known roles was that of “Captain John Christopher” in NBC’s “Star Trek” episode “Tomorrow Is Yesterday.”

The Indian Wells Theater is located on CSUSB’s Palm Desert Campus, 37-500 Cook St., in Palm Desert.

For more information about the 2013-2014 season, visit the Indian Wells Theater website at www.IWTheater.com.

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Of seizures and celebrity:
Evan’s grandmother speaks up

January 12th, 2014 · 32 Comments · Narrative

Jenny McCarthy is the face of vaccine rejectionism in America. The story she tells of how her son, Evan, became autistic after his MMR shot is arguably the origin myth for the anti-vaccine movement, and the legions of  “Warrior Mothers” who follow her. Now, a competing narrative from someone else close to Evan calls the myth into question.

“I have such tremendous guilt for not speaking up when I knew something wasn’t right,” says Joyce Bulifant, Evan’s paternal grandmother. “But I was afraid of Jenny, and didn’t want to be the interfering mother-in-law. I was more concerned about me than taking care of Evan.” She agreed to speak with AutismNewsBeat.

McCarthy’s many critics have pointed to her numerous contradictions. She told Oprah Winfrey, for example, and there is “no doubt in my mind” that the MMR vaccine caused her son Evan’s autism. But she has also written that Evan showed signs of delay by six months – one year before the shot.

“I don’t think she’s very fond of me, but I love her because she is Evan’s mother. It makes me sad that we don’t have a true relationship,” says Bulifant. “That makes me very sad.”

The elf on the shelf

Bulifant is no stranger to Hollywood. The Virginia native has been acting for more than 50 years, and is well known for playing Murray Slaughter’s wife, Marie, on the Mary Tyler Moore Show. She was also a regular on The Match Game, and appeared in Airplane! (1980). She lives in Palm Springs with her fourth husband, actor and composer Roger Perry. Joyce has 15 grandchildren, and they all call her LaLa. When she speaks of Evan, who was born in May, 2002, it’s easy to imagine he is the favorite.

“Evan was here for Thanksgiving, and he left a note on my fridge that I just can’t take down. It reads ‘Dear LaLa, I hope that you love me so much. Thanks, Evan. I love you to the moon and back.

P.S., the Elf is in the freezer with turkey.”

The elf is a small, felt doll that sits on a shelf.

“He used to be afraid of the Elf on the Shelf, but last year he started moving it around the house, hiding it in different places and making it reappear. He said it had magical powers,” says Bulifant. “I love playing magic with him. He’s so very dear. It’s like he has a sixth sense that I don’t have.”

That sixth sense sparks her sense of wonder. “I am dyslexic and so is my son (Evan’s father, John),” she says. “We do compensate when we don’t have all the typical skills. The compensation part fascinates me. T

o me Evan is magical and wonderful and I love him to death.”

Bulifant’s conversation is sprinkled with sweet and simple stories about the boy she loves.  One time at L.A.’s Getty Museum, she said, Bulifant and Evan were throwing quarters into a fountain to make a wish

“I wish you would always love me,” said Evan.

“I wish you would always love me,” she said.

“LaLa, that’s my wish!”

Bulifant said she was concerned about Evan’s months before his first birthday.

As “Marie” on The Mary Tyler Moore Show

“I remember Christmas, 2002 (age seven months). I was bathing him in the sink, and trying to get him to giggle and respond to me, but he seemed detached. My family was a little concerned but I didn’t say anything to Jenny because I know children develop at different times. But I was concerned.”

And then there was the incident in the park, another example of how difficult it is to see autism in a loved one.

“We took him to the park, an

d he started running away from us. We called, but he didn’t even turn around. We wondered if his hearing was impaired,” she says. “That didn’t seem right. So I was testing him in the car seat on the way home. ‘Where is your nose? Where are your ears?’ I asked Evan. He didn’t respond, and I wondered what was going on. Then, when we pulled up in the driveway, Evan suddenly pointed to his mouth and said ‘mouth’, and then he pointed to his ears and said ‘ears.’ It was like he was saying ‘Silly gramma, I know where my mouth and my ears are!’”

Joyce has been active in dyslexia education and advocacy for years, and she called on her research contacts for help. “By the time Evan was 18 months old, I was c

onvinced he had autism,” she says.

Bulifant was wary of approaching McCarthy, who had written two books by that time that made it clear she didn’t appreciate parenting advice from others.

“She wrote ‘I don’t want anyone telling me what to do as a mother,’” says Bulifant. “I was trying to be a good mother-in-law and a good grandmother at the same time. I don’t think I even said anything to John. Everything I read pointed to autism.”

One day, while John was off directing in North Carolina, and Bulifant was staying at Jenny’s Los Angeles home, the “Good Grandmother” spoke up, and asked the nanny about Evan’s development. The nanny reacted defensively.

“I want to ask you something. Have you noticed that Evan doesn’t always connect with me?“ asked Bulifant.

“Jenny is a wonderful mother and he always connects with me.”

“He does watch a lot of television, ” said Bulifant, “and I’m wondering if that means he’s not used to interacting.”

“Evan is fine and always interacts with me. “

Bulifant retreated. “I thought maybe I was just me being a silly grandmother.”

She and her husband left the house for a few hours, and when they came back nobody was home.

“I was terrified that something had happened to Evan.” Then John called, and said that Jenny was “very upset “about the conversation with the nanny.

“You just can’t say anything about Evan,” John continued. “She gets very upset.” He said McCarthy would not come back home until Bulifant and her husband left the house.

Which they did.

Back home, Bulifant wrote a letter of apology to McCarthy. “Jenny wrote back saying ‘You shouldn’t have said anything to the nanny. You should have said it to me.’ And she was right, I should have. I was just afraid. I didn’t want to be the interfering mother-in-law.

“It was very wrong, and that is something I have to live with,” says Bulifant.

McCarthy has told a similar story:

Others had noticed something different about Evan, too. “My mother-in-law said, ‘He doesn’t really show affection,’ and I threw her out of the house,” Jenny says. “I went to a play gym, and the woman [there] said, ‘Does your son have a brain problem?’ … [I said], ‘How dare you say something about my child? I love him. He’s perfect. You can’t say that about a child.’ I just had no idea.”

Bulifant says that after being “thrown out of the house,” she and McCarthy have only spoken a few times, and for the last two years have communicated only through occasional texts.

Seizures and celebrity

Evan’s autism, and Bulifant’s collision with McCarthy’s “strong personality” created another issue. It’s what she calls her “moral problem” for not speaking up sooner about McCarthy’s well-publicized anti-vaccine views. “I know enough about Evan that if I spoke up sooner, more kids would be vaccinated, and fewer would have died or gotten very sick. We’ve seen cases of measles in Texas, and whooping cough killed ten children in California. It breaks my heart. That’s the biggest moral issue in my whole life,” she says.

Vaccines are at the center of McCarthy’s shifting narrative. In one version she says “the soul was gone from Evan’s eyes” shortly after the boy’s MMR vaccine. Here is what she told Oprah in September, 2007:

“Right before his MMR shot, I said to the doctor, ‘I have a very bad feeling about this shot. This is the autism shot, isn’t it?’ And he said, ‘No, that is ridiculous. It is a mother’s desperate attempt to blame something,’ and he swore at me, and then the nurse gave [Evan] the shot,” she says. “And I remember going, ‘Oh, God, I hope he’s right.’ And soon thereafter—boom—the soul’s gone from his eyes.”

McCarthy’s narrative also includes two seizure episodes suffered by Evan, leading to an autism diagnosis. In Belly Laughs, she wrote Evan was diagnosed with a febrile seizure at 2 ½, and three weeks later, he suffered seizures which led to a cardiac arrest, and a diagnosis of epilepsy. By this telling, stereotypical autistic behaviors followed.

Bulifant says the first seizure came in the spring of 2004. Oddly, the news triggered in her a sense of relief.

“I knew that seizures are associated with autism, and that Evan would finally get the diagnosis he needed and finally get help. I wasn’t alarmed.”

The second seizure occurred the evening before Easter Sunday, in Bulifant’s home. “I had an Easter basket for Evan,” she says.

“It was the night before Easter. Evan was so tired that he fell into my arms. I laid him on his bed and took off his shoes and when I looked at him I saw his little eyes rolled into the back of his head. I yelled for John to come quickly. We called 911. John held Evan’s hand and said ‘Don’t worry, you are in a safe place.”

Paramedics arrived. “Jenny was a mess. I now know what ‘wringing you hands mean’, because that’s what I was doing.” The EMTs “bagged” the boy because his breathing was shallow, says Bulifant, then took him to the local emergency room. Jenny rode in the ambulance. Anxious hours followed in the waiting room while doctors stabilized Evan and then allowed family to visit.

Evan’s first words were “Look at that air conditioning vent.”

Jenny and John left Palm Springs with Evan and drove straight to Cedars Sinai Hospital in LA, where he was diagnosed with epilepsy. Joyce felt like screaming – “No, it’s autism!” She had had enough.

“I said to John ‘I now insist that you go to UCLA to see a neurologist.’” By McCarthy’s telling, it took the neurologist 20 minutes to arrive at a diagnosis.

A September, 2007 People Magazine article is typical of how McCarthy tells the story:

This was another seizure, she thought, “but this one is different. He’s not convulsing.” Instead, “foam was coming out of his mouth, (and) and after a few minutes, I felt his heart stop,” she said.

When the paramedics arrived, she told them about Evan’s heart. “They looked at me like I was crazy. I don’t know why,” she said. Only, as they discovered for themselves, the child’s heart was no longer beating, so they administered CPR.

“Why, God? Why me … Why? Why? Why?” McCarthy recalled thinking in those desperate moments, but then, she said, an inner voice came over her. “Everything’s going to come out okay.”

Because there was no pediatric hospital near her parents’ home, Evan and McCarthy drove three hours back to Los Angeles, during which time Evan suffered several more seizures.

Dramatic effect

Another unfortunate dimension to McCarthy’s assault on children’s health is her endorsement of unproven, costly, and potentially harmful alternative therapies for autism. She is front and center at the annual AutismOne conference, where speakers have recommended bleach enemas and chemical castration. Her charitable foundation, Generation Rescue, actively promotes  “a wealth of biomedical therapies that treat the underlying issues of autism inside the body.” These include chelation, hyperbaric oxygen, anti-fungals, anti-virals, and cannabis.

When asked what she thinks of the autism cure industry that Jenny has captained, Bulifant demurs. “I think there is value in eating right and exercise for all children,” she says, her voice trailing off.

But what about telling autistic children they are vaccine injured, or that the soul has been sucked from their eyes? Jenny and her angry mob, as she has called her followers, regularly describe their children as train wrecks, zombies, and worse.

“Jenny says things for dramatic effect,” says Bulifant “I don’t understand that type of thinking. Evan is incredible. One of our favorite things to do is to go looking for lizards. He spots them where I can never see them. I ask him ‘How did you even begin to see that?’”

Still, Bulifant doesn’t hesitate to describe McCarthy as “a very good mother, very caring and trying to do the best for Evan,” adding “I don’t know why she says those things.” She describes her son as good father, and regrets how John has been portrayed as distant and uncaring.

“John never spoke up when Jenny said unkind things about him. I asked him why, and he said it would turn into another ‘Hollywood he said – she said’, and that he wanted to be a gentleman about it, and didn’t want to hurt Evan.”

Does she worry that Evan may one day think he lost his soul to autism?

“I hope that Evan never realizes the things have been said about him. I just don’t want him to ever be hurt. I don’t know if he will ever realize what has been said about him. I hope not.”

Bulifant tries to expose her magical grandson to the arts whenever possible. “I took him to see Billy Elliot, and he loved that. His little mind is working all the time. ”But those bonding opportunities have dwindled since McCarthy moved to the Chicago suburb of Geneva last year. Now, Bulifant watches The View to see new pictures of Evan, and to hear the latest stories.

“Jenny is doing well on The View,” she says.

- by Ken Reibel

_____________________

Update from Joyce Bulifant:
I understand and have great empathy for parents of autistic children who want to know the reason for their children’s autism. They understandably latch onto anything they can find as a reason. That might be what Jenny did when Dr. Wakefield gave incorrect information about vaccines. I don’t think she did this maliciously. She just needed a reason.
If people know Evan showed signs of autism before his MMR vaccine, parents wouldn’t be afraid to vaccinate their children, thereby saving lives and much suffering.
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Public health school says Geier never a site preceptor, was only “in the room”

October 28th, 2013 · 2 Comments · Serious overreach

Mark Geier was never a site preceptor for a graduate student at the George Washington University School of Public Health, as reported on this website last week. An SPHHS spokesperson said the faculty member who made that claim via an email to AutismNewsBeat was in error.

According to the spokesperson, “This particular student’s project was not a practicum. It was part of what is called a culminating experience, which is different from a practicum. Contrary to what was posted on your blog, there was no preceptor and never is a preceptor for a culminating experience. Students completing a culminating experience are supervised by one of our faculty members, as was this student.”

Mark Geier. the Silver Spring, Maryland, genetic counselor known for chemically castrating disabled children, “has never been a site preceptor at any point for any SPHHS student—nor a member of our faculty,” the spokesperson continued.

So what was Geier’s role in the education of a GW graduate student? According to the spokesperson, the notorious anti-vaccine activist was helping the student access data.

“Mark Geier’s role in this student’s culminating experience was limited to facilitating the use of a non-GW data base called the Vaccine Safety Datalink or VSD database, which is administered by the National Center for Health Statistics. In that capacity, Mark Geier was in the room while the student accessed the data from this data base and did not teach or mentor the student in any way.”

The Vaccine Safety Datalink, established in 1990, contains confidential medical records of millions of Americans collected by nine health maintenance organizations. Access is carefully guarded by the National Center for Health Statistics. In order to “be in the room”, a researcher must submit a detailed research proposal with his/her name, along with anybody else collaborating on the research. A computer programmer can also accompany the researcher. The CDC charges $750 a day for access. No student discounts are given.

Admittance to the (Research Data Center) is limited to the researchers included in the Research Proposal. Researchers are required to show photo identification before admittance. A maximum of 3 collaborating. Researchers can sit at a computer station in the RDC.

If Mark Geier was not teaching or mentoring the student, can we assume that he wasn’t collaborating on the student’s research? Or is Geier adding “computer programmer” to his list of fabricated credentials?

The last time Mark Geier was “in the room” was January, 2004, when he received approval for an independent study of adverse reactions to DTaP vaccine. The visit did not go well. Geier was unfamiliar with SAS, the software program most widely used by epidemiologists, which delayed his research several months. After the visit, according to Kathleen Seidel’s reporting from 2006, the acting associate director for Science of the National Immunization Program alerted the Kaiser Permanente Foundation Research Institute to serious procedural violations reported by security personnel.

[M]y office has received reports from the technical monitors[...] describ[ing] potential breaches in confidentiality and execution of analyses that were not approved in advance[...] during the first visit the researchers conducted unapproved analysis on their datasets and on the second visit attempted to carry out unapproved analyses but did not complete this attempt. This analysis, had it been completed, could have increased the risk of a confidentiality breach. Before leaving, the researchers renamed files for removal which were not allowed to be removed. Had it gone undetected, this would have constituted a breach of the rules about confidentiality.

Kaiser Permanente suspended Geier’s project the following month, and along with it access to the VSD. However, approval was reinstated in August of the same year, despite Geier’s admission that he

• initiated analyses not authorized in their research protocol;

• attempted unauthorized merging of datasets; and

• acquired unauthorized data files, which were named in a manner that, if undetected, could have enabled the removal from the Research Data Center of private information about millions of U.S. citizens.

Geier has claimed that he and his son, David, were “the only independent group” to gain access to VSD data, due to the support of members of congress. In this 2005 video, the Geiers claim their efforts to access the database date to August, 2002.

 

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Dear GWUSPHHS: Here are some
questions for your investigation

October 27th, 2013 · 2 Comments · Critical thinking

The George Washington University School of Public Health office of communications is investigating the relationship between castration doc Mark Geier and an unnamed graduate student. The office left the following comment on this website and two others Friday afternoon:

The George Washington University School of Public Health and Health Services is still investigating the claims in this article. However, the article gives the impression that Mark Geier was teaching or advising a GW student who was doing a practicum at SPHHS. In fact, Mark Geier was facilitating the use of a non-GW database the student used while doing his/her research, which was not part of a practicum. The student in question was being supervised by a faculty member at the university and the student’s contact with Mark Geier was limited mainly to accessing the information in this database.

GW School of Public Health
Office of Communications

Investigating Geier is so 2007.  That’s when the Maryland state medical board received its first complaint about a Silver Spring geneticist who chemically castrates autistic children. Maryland suspended Geier’s license in April, 2011. Washington State followed a month later, and Virginia a month after that. California petitioned to revoke Geier’s license in August, 2011, about the same time the unnamed graduate student started studying for a two-year master’s of public health program. By the time said unnamed student graduated from SPHHS, Geier’s license had also been suspended or revoked in New Jersey, Kentucky, Texas, Indiana, Illinois, and Missouri.

So let’s all welcome yet another investigation of Mark Geier, and here’s hoping the SPHHS shares the results with the public health appreciating segment of the public. Here are some questions we hope to see answered:

  • Did Mark Geier submit a site preceptor application to SPHHS? If so, when?
  • Did the student do a practicum as part of her/his degree? If so, who was the site preceptor?
  • Did the student complete a master’s thesis? If so, what was Mark Geier’s role in that paper?
  • What is the nature of Geier’s database? Is it related to genetics (Geier is a geneticist genetic counselor,  by training and experience)? Or were Geier and his facilitated graduate student delving into data related to vaccine safety, an area unrelated to Geier’s skill set?

I’m sure the GWUSPHHS office of communications will be forthcoming with its investigation, and we look forward to further comments.

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