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 convinced 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.
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.
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.
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.
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.
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.
Administrators at the George Washington University School of Public Health allowed Mark Geier, a notorious anti-vaccine activist known for chemically castrating disabled children, to supervise a graduate student. Geier is currently banned from practicing medicine.
Graduate students are required to complete a practicum under the supervision of a health professional, called a site preceptor. The school’s site preceptor handbook sets out requirements for a practicum site:
In general, a practicum site has the following elements:
Serves a public health or health services mission or supports a department with such a mission
Addresses significant public health or health services problems
Offers students the opportunity to learn from public health professionals in a supervised environment
Geier and his son, David, work out of a Silver Spring, Maryland home, less than 10 miles from the GWU campus. They previously operated clinics across the U.S. to promote treatment of autism with Lupron, an injectable hormone inhibitor, charging parents as much as $6,000 per month. The drug is approved to treat prostate cancer, and has been used to “chemically castrate” sex offenders.
The Maryland medical board revoked Geier’s license in Aug., 2012, commenting that Geier’s conduct “constituted a substantial likelihood of a risk of serious harm to the public health, safety and welfare based on the physician’s experimental treatment of autistic children with Lupron.”
Geier had been licensed in 12 states. Those licenses have either been revoked, or allowed to expire. The Maryland Board of Physicians suspended Geier’s medical license on April 22, 2011. Two weeks later, the Washington Post reported:
A Rockville doctor’s medical license has been suspended in Maryland over allegations of putting children with autism at risk, and state officials are seeking to remove his son from a state commission that advises the governor on the disorder.
The officials were also struggling to explain why Mark Geier’s son, David Geier, who has an undergraduate degree in biology and does not have a medical license, was identified by the Commission on Autism as its “diagnostician.” The commission’s Web site had listed him as a doctor until Wednesday, which officials said was a clerical error.
“Under the circumstances, we do not believe it’s appropriate for David Geier to serve on the autism commission,” said David Paulson, a spokesman for the state Department of Health and Mental Hygiene. “Unfortunately, he declined to resign his commission. .?.?. As a result, we are considering the appropriate next steps.”
GWU School of Public Health administrators were apparently unaware of, or ignored Geier’s legal problems, during a period when he was acting as site preceptor for at least one graduate student, AutismNewsBeat has learned. That student studied at the college from 2011-2013. The student’s name is deliberately omitted from this story, and readers who comment are asked to refrain from identifying the student.
Geier’s unethical conduct was first uncovered by Kathleen Seidel, who posted a 15-part series at her Neurodiversity blog, between June, 2006 and May, 2007. The series was titled Significant Misrepresentations: Mark Geier, David Geier & the Evolution of the Lupron Protocol. In the first story, Seidel wrote that David Geier’s byline on a study published in the journal Hormone Research in May, 2006, indicated he was a GWU Department of Biochemistry faculty member or graduate student.
According to the conventions of academic publishing, this would generally imply that (David) Geier is a member of the faculty at GWU, or a graduate student publishing with a thesis advisor or other faculty member in the same department; and that GWU is the venue at which Mr. Geier’s share of the research took place.
David Geier’s most advanced degree is a BA in Biology from another institution. Seidel reported that David Geier enrolled in GWU’s graduate biochemistry program in 2003, and took two courses in during the 2003-2004 school year. He took the last of three public health courses during the Spring 2005 semester.
An email to Mark Geier, asking if he has acted as site preceptor for other graduate students, has not been answered.
UPDATE: The Orlando Sentinel will not be asking a childhood vaccination foe to participate in its Front Burner series. “Just wanted to let you know after careful consideration, we decided to listen to your wise counsel,” wrote Darryl Owens. On behalf of parents and public health advocates everywhere, AutismNewsBeat would like to thank Mr. Owens and the Orlando Sentinel.
AutismNewsBeat has learned that the Orlando Sentinel is looking for two one-time guest columnists to produce an op-ed columns on the “pro” and “con” of childhood vaccinations for the newspaper’s Front Burner series. Here is my response to the editor, Darryl Owens, who can be reached at deowens at tribune.com .
Dear Mr. Owens,
I understand you are soliciting one-time guest columnists to write an op-ed column on the “pro and cons” of childhood vaccines. May I respectively suggest that you not invite the anti-vaccine point of view, just as you would not solicit the views of someone who says the moon landings were faked, or that the Earth was fully formed 6,000 years ago.
I’ve been monitoring and writing about the anti-vaccine movement for over six years, and I have yet to see evidence which suggests that the risks of childhood vaccines are worse than the diseases they prevent. I have seen countless anti-vaccine talking points which blame vaccines for autism, asthma, cerebral palsy, SIDS, arthritis, Crohn’s Disease, and other medical conditions, based on the flimsiest of evidence, or no evidence at all.
I’ve read so many anti-vaccine rants that I can predict some of what your guest columnist will write:
If vaccines are so safe, then why has the government paid billions of dollars to the families with children injured or killed by vaccines? The answer, which your guest columnist won’t tell us, is that the standard of proof in federal “Vaccine Court” is far more lenient than what is found in civil court. Of the 3,000 plus cases settled since 1986, nearly a third were for brain damage and seizure disorders caused by the old DTP vaccine. Today scientists know that DTP did not cause those disorders.
Dr. Andrew Wakefield’s research, which showed the MMR vaccine causes autism, has been replicated many times around the world. Mr. Andrew Wakefield (he is not a physician in the US) lost his medical license in the UK over a study he published in The Lancet. The results of his research have never been replicated, and when given the opportunity to so himself, Wakefield declined.
There are (some random number) of peer-reviewed scientific studies which show vaccines cause autism.That list was cobbled together by anti-vaccine activists with a poor understanding of the science. The studies listed either don’t say what are claimed, have never been published, or are found in low impact journals known for publishing highly speculative hypotheses.
Vaccines are a huge moneymaker for drug makers and doctors, so they have an incentive to lie and cover up vaccine injury. Pediatricians and family doctors make very little from storing and administering vaccines, if they make any money at all. If doctors and drug companies were as evil as anti-vaccine folks suggest, they would be against preventing disease. There’s way more money to be made treating measles, pertussis, and other nasty germs than in preventing them.
The ever -expanding vaccine schedule explains the autism epidemic, since both started around the same time. There is little empirical evidence for an increase in the actual number of children born with autism. The increase is for diagnoses of autism and related disorders, for which there are several sensible explanations. But the notion of an autism epidemic is an article of faith among anti-vaccine activists. Any reference to “skyrocketing autism rates” is mistaken at best.
A more interesting vaccine-related debate might be between two doctors who differ on how to handle vaccine-rejecting parents. One camp will not allow unvaccinated children in their practice out of concern for infants and children in the waiting rooms. Infants are too young for some vaccines, and some children cannot be vaccinated due to very real medical conditions. The other camp chooses to work with those parents out of concern they will take their children to an unqualified “alternative” medical provider, or reject medical care altogether. This is a very real debate among family physicians, and there is no perfect answer.
In a perfect world anti-vaccine conspiracy mongers wouldn’t find it so easy to spread fear, uncertainty and doubt on the internet and on the pages of major newspapers. There’s not much we can do about internet-based paranoia, which flourishes in the absence of gatekeepers who understand and respect the scientific method. Fortunately, most print and broadcast media are skeptical enough these days to do the right thing.
Listen to the parents! That’s what discredited and cult-like autism advocacy groups tell us. What they really mean is “pay no attention to the science – just listen to our unconfirmed anecdotes!”
Groups such as Talk About Curing Autism (TACA) and Jenny McCarthy’s Generation Rescue are notorious for excluding or ejecting skeptics and neutral observers from their events, one part revival meeting, one part trade fair, wrapped in the respectability of science. In their world, a scientific conference is not about challenging speakers with conflicting data, or pointing out biases. It’s about providing a “safe and nurturing atmosphere” where parents feel comfortable to speak their minds. In such a setting, there are no bad ideas, save one: asking important questions.
So it was no surprise when TACA rejected my registration for its upcoming conference in Madison, Wisconsin. I registered online a few weeks ago, and paid my $35 with a credit card. The last time I registered for a TACA conference was February, 2010. My registration was denied then as well.
Here’s the email TACA sent me yesterday:
From: webmaster <firstname.lastname@example.org>
Subject: TACA Order # 9273
Date: September 18, 2013 4:04:50 PM CDT
The purpose of our Wisconsin Real Help Now Conference on Friday and Saturday, September 27th & 28th is to bring together members in the autism community in order to educate and support families and facilitate dialogue on important issues related to autism. As such we want to nurture an environment that is conflict free and allows open communication.
We regret that we will not be able to accept your registration to this event. We are refunding your registration fee today.
Talk About Curing Autism
When TACA barred me in 2010, it followed up the email with an over-night letter that I had to sign for. This is what the email said then:
Dear Mr. Reibel,
The purpose of our Wisconsin Real Help Now Conference on Saturday, February 27, 2010 is to bring together members in the autism community in order to educate and support families and facilitate dialogue on important issues related to autism. As such we want to nurture an environment that is conflict free and allows open communication.
Your attendance at a previous national autism conference was disruptive to the mission and purpose of that conference. We want to ensure the focus of the conference is on education and support and that the environment is safe and supportive for conference attendees.
We have given you a full refund of the purchase price. You will not be admitted to this conference.
The “previous national autism conference” was the AutismOne conference in May, 2008. I had asked for, and received a press pass to that event. My “disruptive” behavior was to stay silent for two days, then ask a question during a Q&A on day three. The organizers’ disruptive behavior included calling hotel security to frog march me to the parking lot.
TACA organizers boast that their conference “brings together highly regarded experts in autism.” On such expert is Bob Sears, MD, FAAP, the pediatrician best known for fabricating and promoting his own untested vaccine schedule. It calls for twice the number of office visits in a child’s first year of life than the schedule that is recommended by real scientists. Pediatricians are not amused.
TACA says parents will leave the conference “with a positive action plan for their child with autism.” Sears advises parents to avoid vaccinating their autistic children until they are “recovered” from the disorder. So presumably TACA’s positive action plan includes positive test results for some nasty viruses.
Another TACA luminary and perennial AutismOne favorite is Anju Usman of Naperville, Illinois. You may know her as the physician who diagnosed aluminum poisoning in a five-year-old autistic boy in 2005, then referred him to another “alternative” practitioner. That doctor, Roy Kerry, killed the boy, in front of the mother. He was trying to chelate lead from the boy’s body, which stopped the child’s heart. A few months later, the Autism Research Institute awarded Kerry with membership into DAN! , which stands for Defeat Autism Now. DAN! practitioners used to earn their cred by completing a grueling eight-hour seminar. Now it takes three days.
There’s something unsettling and cult-like about an organization that treats autistic children like lab rats, then boasts that its conferences are nurturing and safe, where parents are free to speak their minds. But only when everybody is of one mind.
Robert F. Kennedy, Jr., the scion of political liberalism cum environmental activist cum anti-vaccine warrior told an AutismOne audience last Friday that living with autism is the same as life in a Nazi death camp. This is how Dan “Clinic for Special Children” Olmsted reports Kennedy’s remarks:
Each of us will have our highlights from last weekend’s extraordinary Autism One gathering in Chicago, but for me it was Bobby Kennedy Jr. saying, “To my mind this is like the Nazi death camps.”
“This” is the imprisonment of so many of our children in the grip of autism. Talk about cutting through the neurodiverse claptrap! When Bobby Kennedy says something, it gives “cover,” in a sense, for others to use the same kind of language and frame the debate in the same kind of way. (Language that reminds me of David Kirby’s phrase, “the shuttered hell” of autism, in Evidence of Harm.)
Those who can advocate for themselves should do so. Move right along, please. Those who cannot have advocates like their parents and RFK Jr. who are sick of mincing words.
Kennedy made his odious comparison during the conference’s keynote address, a spot held by Jenny McCarthy every year since 2008. McCarthy took her own star turn Saturday, rubbing elbows with with a “celebrity panel” that included neurodiversity advocate Alexis Wineman, of Buchenwald Cut Bank, Montana, the first-ever autistic Miss America contestant. For the past year, Wineman has been telling everyone she meets that she doesn’t need to be cured. “Autism is not a death sentence, but a life adventure,” she says, “and one that has been given me for a reason.”
Courageously spoken words or neurodiverse clap trap – you decide. We know where Kennedy and Olmsted stand.
Contradictory messages are nothing new at AutismOne. Vaccine rejectionism has always been a big tent movement, “a mishmash of libertarians, health nuts and quack medicine vendors, conspiracy theorists, ambulance chasers, ‘investigative’ journalists, advocates of the theory of harm du jour, and, always, a few scientists – who range from the disbarred quack to the clueless semi-mainstream specialist,” says Arthur Allen, author of Vaccines, a must-read history anti-vaccine movements. Members contradict each other, and themselves, all the time. Its followers span the political spectrum, from back-to-nature granola moms to hard-core Christianists. When your case rests on the shaky ground of unconfirmed anecdotes and magical thinking, throwing mud and yelling at shadows is all you have.
But the disconnect between RFK’s death camp slur and Wineman’s sunny optimism is still noteworthy, if only for the lengths that McCarthy has gone to cultivate the relationship.
McCarthy herself reached out to Wineman, first with a Tweet when Miss Montana was still competing for the crown in Las Vegas. Phone calls followed, and last Friday evening, the two women attended a Generation Rescue fundraiser in a swanky Chicago night club, which raised $200,000 for questionable medical treatments. From her red carpet, Wineman told assembled reporters “I want to tell (children with autism) to accept themselves. Autism can be a life adventure if they want it to be, but they have to open the door to get out of their comfort zone. Never underestimate yourself. No matter what your challenges are nothing is stopping you from trying.”
Wineman couldn’t be more out of step with McCarthy’s angry mob if she called Wakefield a fraud and a liar, or said the evidence for an autism epidemic is only anecdotal. And if she said those things the angry mob would rip the crown from Wineman’s head before hotel security frog-marched her out of the Lombard Westin. But what Wineman did say, has been saying, and will no doubt continue to say, is every bit as subversive to the anti-vaccine movement’s flagship annual event. Maybe more so.
The next day, Wineman and McCarthy “shared experiences, insights, advice, along with trials and tribulations, growth, courage and success,” at a celebrity panel dubbed “No Limits.” Afterwards the two sat at adjoining tables, shoulder to shoulder, and signed autographs. Later Wineman tweeted “Who would have thought me signing autographs with Jenny McCarthy. Too sweet Love my life.”
From the bottom of the ocean
To the mountains on the moon
Won’t you please come to Chicago
No one else can take your place
-Graham Nash, “Chicago”
* * *
The first autistic Miss America contestant is a cheerful 19-year-old with heart-breaking beauty and a refreshing message. She celebrates her autism, telling reporters and talk show hosts that “Being on the spectrum is not a death sentence, but a life adventure, and one that I realize has been given to me for a reason,” and “It’s amazing how people don’t accept other people just because they’re different. Being different is not something to look down on, but to be embraced. People need to understand.”
She once told Jeff Probst “There is nothing wrong with being autistic,” and “My autism doesn’t define who I am, I define my autism.”
So why has Alexis Wineman accepted Jenny McCarthy’s invitation to join a “celebrity panel” at a notorious anti-vaccine conference, breaking gluten-free bread with people who compare autism to a death sentence, and something to be despised? One possible answer can be found in her interview published on Disability Scoop last October:
‘Socializing with my classmates, even when I wanted to, was awkward to say the least. I wouldn’t get their jokes half the time. I took everything so literally,’ she told the site.
Here’s what Alexis posted on her Facebook page in January, after receiving a phone call from McCarthy:
Could it be that Alexis is following mean girl McCarthy into the lavatory for a humiliating makeover? Does she literally believe that autistic children can be “rescued” with bleach enemas, chelation, and chemical castration, all of which are “treatments” promoted by other invited speakers the AutismOne conference?
Wineman grew up in Cut Bank, Montana, one square mile of treeless plain and 2,800 hopeful souls. After second grade, Alexis’s twin sister, Amanda skipped ahead into fourth, but not Alexis. “That’s enough to make anyone feel dumb. But I got called “retarded” a lot. I really hate that word,” Alexis told Glamour Magazine. Her behavior deteriorated.
“The meltdowns lasted hours and became more frequent,” says her mother, Kim Butterworth. “We’d have to grab and hold her; she’d be as stiff as a board. It was scary. And she started melting down at school. I’d get the call: ‘We’re having a problem.'”
At age 11 she was diagnosed with PDD-NOS, after the family consulted their pastor and a therapist. “I felt so alone growing up, and I still do at times,” she told a conference on autism at the Montana State University Billings last fall. “Nobody understood what I was going through. I separated myself from my classmates and spent most of my time alone. I stayed quiet to hide my speech problems. Due to these overwhelming and daily struggles, I looked at myself as a punching bag for others, and a burden to my family.”
Her turnaround came in high school, where Alexis ran cross country, joined the drama club, and became a cheerleader. At 18, she entered the Miss Montana contest and won.
Alexis wears her celebrity well. “We cannot cure what is not a sickness,” Miss Montana said in the video shown at the pageant. “But we can begin to understand autism, and help those with the condition to unlock the potential that lies within all of us.”
McCarthy and her business partners disagree. The AutismOne conference is a veritable trade show of unproven and questionable autism “cures”, where the hiss of hyperbaric oxygen chambers lures the credulous, and Mr. Andrew Wakefield tells starry-eyed mothers that “recovery is possible.”
So why did McCarthy reach out to Alexis? Could the invitation be part of McCarthy’s 12-step anger recovery program? The nursing school drop out and ex-MTV host is desperate to shed her anti-vaccine past, which means dissing the “angry mob” she once bragged about. She told the AP in January that she hasn’t publicly commented on vaccines in four years (it was more like two years, but oh well). Her 2011 AutismOne keynote address barely mentioned vaccines. In her 2012 speech, she was introduced by a plaintiff’s attorney who told parents “the claim that mercury doesn’t cause autism is a lie,” but McCarthy herself stayed away from the V word. Meanwhile, when she speaks of Generation Rescue (“my foundation!”), she stresses assistance to parents.
All of which raises (not begs) a serious question: Is the anti-vaccine movement growing up? Can the acceptance-and-accommodation virus find willing hosts in McCarthy’s mob? Can Alexis Wineman from Cut Bank, Montana, attract enough autism parents, and generate enough buzz, to turn Generation Rescue into a responsible and respected advocacy group?
Does McCarthy need Miss Montana?
Or is McCarthy’s invitation as cynical as inviting Al Sharpton to a Sons of the Confederacy conference? Not that Sharpton would accept.
Dr. Bob Sears is best known for his 2007 work, The Vaccine Book, ostensibly written “to give parents a balanced look at pros and cons of vaccination so that they can make an educated decision.” In reality, the book has only added to the unnecessary fear, uncertainty and doubt about vaccines that have driven thousands of parents to leave their children vulnerable to preventable diseases. And while America’s medical establishment has caught on to Sears, he still enjoys a following. His book has sold about 50,000 copies, and Sear’s Facebook page lists over 6,000 followers.
Last week Sears told his FB followers that we can only truly know that vaccines are safer than the diseases they protect us from if the CDC studies health outcomes of vaccinated and unvaccinated children. Sears no doubt includes autism in those “health outcomes”, since he has advised parents to avoid vaccinating their autistic children until they are “recovered” from the disorder. Anti-vaccine activists have been agitating for such a study for years, most recently at the shameful Congressional anti-vaccine hearing last November 29. Jenny McCarthy’s Generation Rescue even attempted such a survey by telephone in 2007. It found that autism was more common among unvaccinated children than vaccinated.
Epidemiologists tell us such a study, done well, would be unethical, since it would mean leaving many thousands of children vulnerable to disease, just to prove what medical science already knows – that vaccines don’t cause autism. Sears says there are enough totally unvaccinated children around to conduct such a study, and on Facebook he cited a paper that supposedly shows that 5-10 percent of American children have never been vaccinated.
The IOM and the CDC continue to hide behind the claim that to do a comparative study of unvaccinated versus vaccinated children would be unethical. But as long as they neglect to do this research, many parents will continue to decline vaccines over the concern about lack of safety research.
The IOM states that one challenge of an unvaccinated study is that there is an inadequate number of study subjects, as less than 1% of children are completely unvaccinated. I don’t agree with this statistic. It’s more like 5%, and could even be 10%. One brand new international study revealed that 10% of households surveyed had children who were completely unvaccinated. 10%!!! And it was the more educated and wealthier families that were more likely to be unvaccinated. The IOM’s claim that there aren’t enough unvaccinated children to study simply isn’t true. With over 4 million babies being born in the U.S. every year, they would have their pick of about 400,000 unvaccinated children to study each year.
Sears links to a meta-analysis of vaccine surveys published last summer in the journal Tropical Medicine and International Health. Xavier Bosch-Capblanch from the University of Basel, Switzerland, and his team reviewed 241 nationally representative household vaccination surveys in 96 low and medium income countries. The percentage of unvaccinated children (ages 12-59 months) was 9.9% across all surveys, but ranged from zero percent (Albania,Peru, and Uzbekistan) to 28.5% (Ethiopia). Sears’s claim that ten percent of American children are completely unvaccinated puts the country on par with Namibia (9.2% in 2007), Haiti (10.3% in 2006), and Yemen (10.9% in 2006). It also means that scores of developing countries, including Vietnam (1%) Tajikistan (.9%), and Sierra Leone (1.9%), should think twice before issuing visas for American children.
Anti-vaccine activist “Dr. Bob” Sears reaches out to his fans
Despite Sears’s best efforts, the percent of fully vaccinated children has increased over the past decade. That’s discouraging news for Sears and others who have doubled down on a vaxed v. unvaxed study. But overall rates should not mask the real harm of anti-vaccine propaganda – encouraging community clusters of vaccine rejectionism that have led to unnecessary suffering. One such cluster incubated a measles outbreak in San Diego in 2008. The index patient was a boy who had just returned from a trip to Switzerland. By the time the virus was contained, four others came down with a disease that can lead to pneumonia, encephalitis, and even death. His family’s pediatrician? Dr. Bob Sears.
What kind of doctor, you might ask, would encourage parents to withhold an important vaccine? The kind who aligns himself with the worst elements of the antivaccine movement. The kind who misrepresents published science so as to fuel the anti-vaccine movement’s push for an unethical study. The kind to fabricate his own, untested vaccine schedule, then package it in The Vaccine Book.
In a series of articles released today, the American Academy of Pediatrics outlines its opposition to a proposed UN treaty which, if approved, would ban the preservative thimerosal from vaccines worldwide. The ban is also opposed by the World Health Organization and the US Public Health Service. It is estimated that multidose vaccines with thimerosal as a preservative are used in 120 countries to immunize approximately 84 million children, saving about 1.4 million lives each year.
The AAP’s opposition reverses the professional organization’s call in 1999 for the removal of thimerosal from the US pediatric vaccine schedule. That action is frequently cited by anti-vaccine groups as evidence that health officials know that vaccines cause autism and other neurological conditions. But Dr. Louis Z. Cooper and Dr. Samuel L. Katz, co-authors of one of today’s articles, directly take on that concern:
Had the AAP (and, we suspect, the USPHS) known what research has revealed in the intervening 14 years, it is inconceivable to us that these organizations would have made the joint statement of July 7, 1999. The World Health Organization recommendation to delete the ban on thimerosal must be heeded or it will cause tremendous damage to current programs to protect all children from death and disability caused by vaccine-preventable diseases.
The 1999 domestic ban surfaced during a Nov. 29 congressional hearing on autism, where representatives of both parties repeated long-debunked anti-vaccine talking points. Rep. John Tierney (D-MA) asked the CDC’s Dr. Colleen Boyle why thimerosal was taken out of childhood vaccines if there were no concerns about its safety. Boyle wisely agreed to get back to him with an answer. An anti-vaccine hearing is no place for reasoned discussion.
In another article, researchers Katherine King, PhD, MSc; Megan Paterson, and Shane K. Green, PhD; reaffirm that “there is no credible scientific evidence that the use of thimerosal in vaccines presents any risk to human health.” They continue:
Extensive pharmacologic and epidemiological research has shown early, theoretical concerns about links to autism or other neurodevelopmental disorders to be false. Indeed, the exculpatory strength of the data now available on thimerosal is well evidenced by recent statements from the Global Advisory Committee on Vaccine Safety, US Institute of Medicine, and American Academy of Pediatrics, all of which have concluded that thimerosal exposure through vaccination is not harmful to human health.
The AAP’s latest action is a shot across the bow of anti-vaccine groups. The UN’s proposed thimerosal ban has been championed by Mark Geier, the disgraced Maryland geneticist best known for chemically castrating disabled children. Two years ago, he told a group of African delegates gathered for a session of the Intergovernmental Negotiating Committee in Japan that thimerosal “is favored by the pharmaceutical industry because it is cheap and enables the industry to keep making vaccines in old and dirty factories.”
Geier is a regular at Jenny McCarthy’s annual anti-vaccine conference, where he receives standing ovations from anti-vaccine parents. Ten states have either revoked his medical license over the last two years, or allowed it to expire, for Geier’s ethical lapses which included lying about his qualifications, and risking children’s health with unproven medical treatments.