3:23 pm CT – The public witnesses are seated. They are:
Mr. Bob Wright, Co-Founder, Autism Speaks
Mr. Scott Badesch, President, Autism Society
Mr. Mark Blaxill, Board Member of SafeMinds, an anti-vaccine advocacy group
Mr. Bradley McGarry, Coordinator of the Asperger Initiative at Mercyhurst, Mercyhurst University
Mr. Michael John Carley, Executive Director, Global & Regional Asperger Syndrome Partnership
Mr. Ari Ne’eman, President, Autistic Self Advocacy Network
Bob Wright is up first. The former president of NBC Universal is schooled on how to use a microphone.
Wright is playing to the peanut gallery now, slamming Boyle and Guttmacher for their testimony.
“The CDC spends almost no money for autism – only $20 million or $30 million.”
3:32 – Scott Badesch of the Autism Society.
“The services for autism are currently difficult to navigate.” Then he blasts the IACC for not including government officials.
“The need for adult services is extensive. The greatest cliff occurs when somebody with autism turns 21, and there’s no one there to help them.”
Mark Blaxill’s turn. “I wrote a book on autism. It argues that autism is a new condition.” Before 1930, he says, the rate of autism in the US and the world was “effectively zero.”
He’s showing PowerPoint slides. “It’s obvious when somebody is autistic.” This is nonsense.
“It’s absurd to waste money on genetic research in this crisis. There is no such thing as a genetic epidemic.” The “autism gene hunt.”
The CDC has given us securities fraud to avoid accountability for an epidemic.
3:43 – Bradley McGarry. “This is just the beginning of the wave that has been characterized as an epidemic.”
3:48 – Michael John Carley. “Research is based on the future, and not on where the greatest need lies, which is the present.” Adults on the spectrum are starved for housing, jobs, and other opportunities. Yeah!
“We are not amidst a health crisis. We are amidst a services crisis.” This guy rocks.
“Evidence-based conviction, not hope.” He’s appalled that we are still talking about vaccines.
3:55 – Ari Ne’eman. “In God We Trust, everybody else bring data.”
Ne’eman doesn’t buy into the epidemic talk. He asks for a prevalence study looking at adults with autism in the US, similar to the one in the UK which found 1 percent.
Dan Burton again. “I want you to get a copy of this whole hearing, and disseminate it and try to get as many people as possible to take a look at it.”
He says the NVICP isn’t getting money to people who need it. Does he want to raid the fund?
He calls people with autism a burden.
4:05 – Rep. Cummings. “I listened to you Mr. Blaxill, and you feel there’s been a great deal of game playing.”
More epidemic talk. Ne’eman responds. “It stands in contravention to a good deal of science.”
He adds “The perception that autism is a recent new thing is damaging” because it excludes the needs of adults.
“What kind of services are you talking about?” asks Cummings.
Carley: ABA, enforcement of IDEA, housing for adults, job training. “This is not a population short on brain cells.”
Carley addresses the myth of the epidemic. Now Blaxill wants to respond.
“The 1:88 number – the CDC doesn’t break out the categories. We don’t know if Asperger’s is part of the increase.”
DSM-IV, he says, was supposed to be a “corrective narrowing” of the expansion.
The “great unmentionable – vaccines.” An inflection point in 1990 – vaccines explain it.
“Statistical trickery” by the CDC.
Issa asks Bob Wright some questions. “There is such a wide divergence in the science. The IACC seems to be missing the mark. What is your view of what needs to be done?”
Wright: We need a nationwide strategic plan. That includes safety research on vaccines. Somebody has to coordinate all this activity. The CDC and NIH don’t do services.
“What we deal with is a lot of ignorance.” Wright was talking about doctors, not the people who applauded Mark Blaxill.
Rep. Kelly is grilling Blaxill about his criticism of genetic research. “Who else believes what you do? Why haven’t we heard of this before?”
Blaxill blames the IACC and NIH. “They are not accountable in any way. The were only trying to maintain the status quo.”
Rep. Cummings is quoting Sam Cooke – “I was born by the river….Change is going to come.”
The committee seems to have calmed down now. The talk has turned to adults with autism and services.
Spoke too soon. Blaxill is back on the “inflection point.” The beginning of the epidemic. A tsunami of desperate families. The inflection point was in 1990. So those kids are 22 NOW!! OH NOES!
Now Blaxill has been asked to comment on the Brick Township study. Scientists are being punished for being politically incorrect. The NIH enforces the orthodoxy. So does the press.
A boy with autism wanders in front of the witness stand. I predict a strained metaphor from Mark Blaxill.
4:44 – Issa wraps up. A list of things we have learned today. “There is nothing we heard today that is off limits for this committee to explore.”
You can watch the House Committee on Government Operations and Reform online HERE.
12:59 pm CT – Joe Biden is shopping for children’s books at Costco. Welcome to C-Span 3.
1:00 – OK, here we go. Chairman Darrel Issa reminds us that the mission of the committee is to make sure tax money isn’t wasted. The topic today, he tells us, transcends partisan politics.
“If the numbers grow from 1:88, then we will in fact have an epidemic.”
” The committee will be acting as a conduit of information for the rest of congress.
Issa thanks Brian Hooker of Focus Autism for bringing autism to the committee’s attention. Hooker is a regular contributor to AgeOfAutism, Whale. to, NaturalNews and other anti-vaccine websites.
1:10 – Rep. Elijah Cummings (D-MD), promised retiring Dan Burton that his work will be carried on.
1:13 – Burton: “Contrary to how the media have portrayed me, I am not anti-vaccine.” OK, then.
He’s on a roll now. “It wasn’t so bad when a child gets one or two or three vaccines… Mercury accumulates in the brain until it has to be chelated.” This guy is totally unrepentant for the problems he’s caused.
It doesn’t sound like Burton is aware that thimerosal has been absent from childhood vaccines for ten years.
“(Children with vaccine induced autism) will live for another 67 years, and they will be burden on society, and on their parents.”
Burton is so crazy, that the SAFE MINDS guy will come off as calm and rational.
1:20 – Rep.Danny Davis (D-Chicago) thanks Burton for using his position as chairman to bring attention to autism.
1:22 – Dennis Kucinich (D-OH) – He recalls the language snuck into a Homeland Security bill ten years ago that would have shielded drug companies from liability for poisoning people with thimerosal. “This is a new beginning, and I salute the chair for making it, but it goes well beyond thimerosal and includes coal.”
1:26 – Issa introduces Dr. Alan Guttmacher from the NIH, and Dr. Colleen Boyle from the CDC.
The two witnesses are sworn in. A-CHAMP was hand-wringing in its latest press release that the witnesses would be allowed to lie.
Guttmacher is reading an uninspiring statement about the IACC, what it does, etc. He’s justifying the money Congress pours into the IACC, then launches into a long laundry list of studies and programs that Congress has funded.
Colleen Boyle, CDC epidemiologist is next. Her current autism budget is $21 million, and she’s going to tell us how the money is spent.
She names all 12 states of the ADDM network. Fun!
Darrell Issa asks a couple questions. “Does autism in history pre-date all vaccines?”
“Definitely” says Colleen Boyle. Guttmacher talks about Kanner in 1943.
Issa asks if autism has more than one cause “like cancer.” Yes, says Guttmacher.
“Is it fair to say we can rule nothing out in absolute terms as far as being a contributor? Including things we haven’t yet looked at?”
Guttmacher some factors have been looked at so carefully that we can rule them out (hint: vaccines).
“Are we waiting too long to have children?” asks Issa, noting that medical science has accommodated parents who want to have children later in life.
Rep. Cummings notes the “looks of frustration” on the visitors seated at the back of the room. “What can we do to help the folks behind you?” he asks the two government scientists.
Guttmacher reassures the congressman that he shares the frustration of the parents, some of whom can be seen rolling their eyes and laughing in the same camera shot as the government scientists.
Cummings asks about the make up of the IACC.
Burton is going to show a two-minute video. “I know there are many causes of autism, but the one I’m talking about is vaccines.”
The video slams mercury amalgam, and draws on discredited University of Calgary research.
“This is worse than an epidemic! It’s an absolute disaster! How can anyone watch this video and not be alarmed!”
The peanut gallery applauds when Dan Burton finishes. Then explodes in anger when Colleen Boyle notes that thimerosal is no longer used in scheduled pediatric vaccines.
1:58 – Rep. Eleanor Holmes Norton (D-Wash. DC) – Asks if there are undiagnosed young adults with autism, and what do we do for them. Norton is a long-time advocate for persons with Down Syndrome.
Is that Katie Wright in Colleen Boyle’s camera frame? She’s very, uh, expressive.
Rep. Paul Gosar, (R-AZ), asks if the CDC looks at diet as a possible cause of autism. He reminds us that he is a dentist.
“We should be listening to the families,” he says, motioning toward the peanut gallery. He’s a GF-CF proponent. “You name a disease, you will find a dietary aspect.”
The small-government Republican wants government to tell parents how to eat. He says he has spent hours walking through a grocery store, looking for gluten free food. He shares an anecdote about an autistic child who was recovered after he was taken off gluten and milk. The peanut gallery swoons.
2:11 – Rep. Kucinich. He’s been researching the association between mercury and autism. He’s gunning for big coal. I sure am glad vaccines don’t contain coal!
Now he’s quoting the Palmer study that supposedly found an association between coal-fired power plant emissions and autism. Kucinich wants more research into mercury from coal and autism.
2:16 – Freshman Congressman Patrick Meehan (R-PA) – says he doesn’t know a subject that has caused do much frustration among his constituents. He cites the latest prevalence numbers. “Has anything accelerated to this degree in your experience?” he asks Boyle.
“As we’ve seen this acceleration in the diagnoses, can you tell us why this isn’t a public health crisis?” Now he’s channeling those frustrated constituents. “Who’s in charge of this?” he asks while stabbing his fingers in the air.
Rep. John Tierney (D-Mass) – He asks Boyle why thimerosal was removed from most vaccines.
Rep. Mike Kelly (R-PA) – “How do people in impoverished areas get access to services?” Yes!
Rep. Davis asks about prevalence rates of black, white, and Hispanic children. “Are there socioeconomic barriers that prevent parents and physicians from recognizing ASDs in persons of color?” Guttmacher: “There are issues of access here.”
Rep. Bill Posey (R-FL) asks if children from Africa have more autism since being vaccinated. He is a big fan of Dave Weldon, an anti-vaccine congressman who retired a few years ago.
Posey asks if the CDC has ever conducted a vaccinated v. unvaccinated population. “You’ve wasted two minutes of my time,” he says to Boyle.
Now he’s asking about Poul Thorsen. “Have you gone back to validate his studies? I mean, he’s an enormous scumbag, one of the most wanted people on earth?”
Now he’s quoting the SAFE MINDS “study” that correlates mortality rate with vaccination schedules.
“Multiple bomb blasts of multiple vaccinations in a short period of time.”
2:46 – Rep. John Yarmuth (D-KY) – He wears an autism bracelet.
What would the CDC and NIH do with an extra $2 billion or $4 billion?
Guttmacher praises private efforts. “We need to keep that partnership.”
Need more research into environmental and genetic factors. The go together, he says. And more money for intervention.
Rep. Christopher Smith (R-NJ) – Takes credit for funding and establishing the IACC.
“The 1:88 figure – horrible number, terrible number!” He’s been in congress for 32 years, and has considerable experience with Africa, and says he has never seen a spike in autism in Africa. He asks about gut flora and its contribution to autism. Why is the NJ prevalence so high, but other states much lower?
Consistency is not this guy’s strong suit. On one hand he says autism is an epidemic. On the other, he acknowledges that the harder you look for autism, the more you find.
Rep. Carolyn Maloney (D-NY) – “Autism is becoming a growing epidemic in the US, and I want to complement Congressman Burton.”
She wants to know why autism has grown from 1:10,000 to 1:88. The prevalence for autism has never been 1:10,000, but Maloney is on a roll.
Interesting fact: Carolyn Maloney has proposed on several occasions that the CDC research why the Amish don’t get autism. The bill never made it out of committee.
“I’m for vaccinations, they prevent diseases, but why so many when the verbal evidence from so many parents is that they cause problems?”
Verbal evidence = unconfirmed anecdotes.
Peanut gallery applauds.
Rep. Vern Buchanan, (R-FL) – Do we get 40 vaccines these days? Why is it twice what France is, three times what Finland is? The SAFE MINDS lobbying initiative must be awesome!
Buchanan says the care cost for autism is $2.3 million per person.
Now Rep. Cummings is picking up where Buchanan left off. “There’s something wrong with this picture. When the rate goes from 1:10,000 to 1:88.” Now he’s questioning the vaccine schedule. The peanut gallery applauds.
The camera pans the audience, and we see a crying mother.
A Utah congressman wants to know why his state has the highest administrative prevalence in the US. Except he didn’t use the words “administrative prevalence.” And it’s been a year since the CDC numbers came out, and the Utah congressman has apparently never investigated how the ADDM works.
“I’m not a statistician, but I just see big numbers.”
But he plays one on C-SPAN.
Burton is back. “Why did the CDC take out the thimerosal?” What, Burton knows most vaccines don’t use thimerosal? Guttmacher and Boyle wisely say they will look into it.
C-SPAN 3 will broadcast today’s autism hearing live at 2 pm ET. You can watch the House Committee on Government Operations and Reform online HERE.
Here is the House Oversight and Government Reform Committee list of witnesses. Each will have five minutes to present.
Coleen Boyle, Ph.D., Director of the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention
Mr. Bob Wright, Co-Founder, Autism Speaks
Mr. Scott Badesch, President, Autism Society
Mr. Mark Blaxill, Board Member of SafeMinds, an anti-vaccine advocacy group
Mr. Bradley McGarry, Coordinator of the Asperger Initiative at Mercyhurst, Mercyhurst University
Mr. Michael John Carley, Executive Director, Global & Regional Asperger Syndrome Partnership
Mr. Ari Ne’eman, President, Autistic Self Advocacy Network
There are so many things wrong with this hearing. First and foremost is the assumption by Rep. Dan Burton and others that autism is an epidemic. The title of the hearing, 1 in 88 Children: A Look Into the Federal Response to Rising Rates of Autism, assumes something for which there is no evidence. In epidemiology, the word “rates” refers to disease incidence, or an increase in the actual number of cases. This is not the same as the number of diagnoses, or prevalence. But Burton cluelessly conflates the two words, using them interchangeably to spread fear about a people like his grandchild.
So we have a congressional hearing predicated on a unproven notion, and a government scientist has five minutes to school a room full of politicians in the math-intensive science of epidemiology. But that doesn’t stop another committee member, U.S. Rep. Mike Kelly (R-Penn), from calling the hearing “an opportunity to raise awareness about autism.”
“Autism is something that affects a lot of families,” Kelly recently told the Erie Times-News. “This is a chance to educate ourselves about ASD and then educate our colleagues.”
Inviting Mark Blaxill of SAFE MINDS to educate Congress is like giving a creationist a seat at a science education hearing. Blaxill, who is not a scientist or a doctor, formed his conclusions about vaccines and autism some 13 years ago, and has been looking for evidence to support his beliefs ever since. That is the opposite of how science works. In 2000, he co-wrote a pseudo-scientific paper titled “Autism: A Novel Form of Mercury Poisoning.” To my knowledge, he has never admitted that his novel hypothesis has failed in every way. But he doesn’t have to, as long as grandstanding politicians such as Rep. Burton confer the title of “expert” on him.
Burton can’t even makes himself sound knowledgeable. He recently told a Roll Call reporter “If you get one shot and it has mercury in it, you get maybe a little bit of mercury in there that may not affect you neurologically. But it stays there, at least a part of it does. So when you have a number of shots, there’s an accumulation of it, and that’s when I think it can be real damaging.”
There are entire books filled with things Burton doesn’t understand about vaccines. For instance: thimerosal, once used as a vaccine preservative, has been absent from the pediatric schedule for ten years. A thimerosal molecule contains a single mercury atom. It is water soluble, and clears the body in about ten days. There is no evidence it accumulates in the brain. Elemental mercury, on the other hand, is found in everything we eat and drink, and our bodies have evolved (a controversial idea for Burton, I am sure) to deal with minute amounts of mercury and other potentially toxic substances. And then there’s this: the symptoms of mercury poisoning are not the same as symptoms of autism.
Rep. Burton has no doubt been told these things over and over, but as any true believer, he just doesn’t care. He formed his conclusion shortly after his grandson was born, and has been looking for confirming evidence ever since.
This man was re-elected to his house seat 14 times. Think about it.
This is how the Chicago Sun-Times quells criticism of the paper’s decision to feature Jenny McCarthy as a family advice columnist.
I would like to reach out as part of the communications team for the Chicago Sun-Times and Splash publications, to share with you the Sun-Times’ statement regarding concerns specifically about the focus of Jenny McCarthy’s column:
“Jenny McCarthy has signed on to share her special brand of humor with fans through her Splash column and daily blog. As our readers know, Jenny’s contributions are lifestyle focused and light-hearted. The vision for the column is not medical advice, therefore medical topics, like vaccination, are not within the scope of the column and will not be addressed.”
This is our response:
Assistant, Public Relations
Wrapports / Chicago Sun-Times
Dear Ms. Weems,
Could Jenny McCarthy’s light-hearted personality make it less likely that the Sun-Times would publish something critical about her, such as how she has persuaded parents to leave their children vulnerable to preventable diseases? Or that her annual AutismOne conference promotes bleach enemas as a treatment for autism? Are you concerned that your newspaper’s de facto endorsement of Jenny McCarthy’s infectious brand of humor may confer legitimacy on vaccine rejectionism and unproven autism treatments? Are you aware that McCarthy’s organization excludes and even expels those who report critically about her autism conference, including newspaper reporters?
You may think your readership doesn’t know McCarthy’s back story, or care. But that will change. Your ill-considered decision to embrace McCarthy’s special brand of humor does not sit well with thousands of medical professionals, parents, academics, child health advocates, bloggers, and others who think McCarthy has much to answer for. Their simmering disappointment is very real. Is the Sun-Times willing to risk alienating so many people, in all walks of life, from coast to coast, just to attract readers who will soon learn of Jenny McCarthy’s special brand of child abuse?
Please reconsider your relationship with home-town girl Jenny McCarthy. Severing ties would be more than just a smart business decision, even if that’s your only concern.
* * *
EveryChildByTwo is asking parents and others to send their own message to the Sun-Times editor-in-chief James Kirk, expressing concern about his paper’s cozy relationship with McCarthy. Here is a sample message:
Dear Mr. Kirk,
It has recently come to my attention that you have hired actress Jenny McCarthy to write a daily blog on parenting, dating and family advice. Jenny McCarthy’s claims that her son became autistic after being vaccinated have resulted in a major decline in the public’s confidence in vaccines. These claims were highly publicized, despite having no scientific merit and were countered by the worldwide scientific community. Families have chosen not to vaccinate their children because of the “advice” provided by Ms. McCarthy, and children have died as a consequence. Our country faces the largest outbreaks of whooping cough in decades and recent outbreaks of measles have een traced back to families who did not vaccinate their children.
[insert personal anecdote here]
I ask you to seriously reconsider your decision to provide a forum for Jenny McCarthy’s unsound beliefs. There are certainly better qualified candidates for this important position.
We have learned that Rep. Dan Burton (R-Pompous) has been given the go-ahead to hold hearings on vaccines and autism before the House Oversight Committee. Congressional attention, even from someone as unhinged as Burton, gives anti-vaccine groups the vapors. One group, SAFEMINDS, sent out a press release in August claiming “Congressman Darrell Issa, Chair of the House Committee on Government Oversight and Reform, has promised a hearing on the problems with the Vaccine Court and at the CDC regarding autism/vaccine research,” and urged fellow travelers to contact their representatives. Now Issa has told Burton he can have his hearing.
This is Burton’s last term representing a district that encompasses central Indiana. He was first elected in 1982. Whether Burton seizes the brass ring and schedules a hearing is yet to be seen.
Rep. Dan Burton, R-Indiana
When we last heard from Burton, he was overseeing six separate congressional hearings on vaccines an autism, between 2000 and 2003. A star-studded line up of anti-vaccine quacks and misfits answered the call, including Andrew Wakefield, Boyd Haley, and Jeff Bradstreet. Die-hard political junkies remember Burton from 1994 when he invited reporters to his backyard to watch him shoot a pumpkin. Why, you might ask, was the honorable Congressman from Indiana shooting a pumpkin? Why, to prove that Bill Clinton murdered Vince Foster! Burton publicly referred to Bill Clinton a “scumbag”, even though Burton himself had fathered a child out of wedlock in 1983.
In 1995, during congressional hearings on the US War on Drugs, Burton suggested that the US “should place an aircraft carrier off the coast of Bolivia and crop dust the coca fields.” This plan proved to be unworkable primarily because (1) Bolivia is landlocked and thus has no coast (Burton was chairman of the Western Hemisphere Subcommittee at the time); 2) the Andes mountain range is in the way; and 3) F-18s are not crop dusters. When Bolivians heard Burton’s suggestion, they dragged their feet on US drug eradication efforts, which means Burton actually hurt the very cause he was trying to help.
Sound familiar? Burton, who has a grandson with autism, was also trying to help when he gave Congressional imprimatur to the unproven and implausible vaccine-autism connection. Anti-vaccine groups have been drawing on Burton’s hearing ever since for inspiration, and citing quotes such as:
“Whether it was the MMR shot or the mercury that was in these other vaccines, or a combination of the two, I do not know. But I do know that hundreds of thousands of children in this country and around the world are suffering because of autism, and many of them are suffering from autism shortly after having received one or more of these vaccines”
One academic, studying how anti-vaccine myths resonate, also noticed Rep. Burton. In Vying for credibility in the US Congress: legitimating symbols in the debate over immunization and autism, medical anthropologist Maya Ponte wrote:
In Burton’s rhetoric, the eyes play an important role as the purveyors of truth. He often makes evidentiary statements that turn on the use of this sensory organ: “I saw it with my own eyes, so something happened” (US House of Representatives 2001), or “My only grandson became autistic right before my eyes” (US House of Representatives 2002a). To Burton, seeing, in a simple and straightforward sense, is believing. He ties the evidentiary legitimacy of sight to his religious tradition: “I do not like to quote scripture very often, but there is none so blind as those that will not see” (US House of Representatives 2002b)
Burton’s hearing would be more than just his second bite at the mercury-laced apple. The timing is important to those with an anti-vaccine agenda. It’s been over a year since Fox News was trumpeting a new “study” that supposedly shows the US government has been quietly paying off victims of vaccine-induced autism. Soon after, the authors held court at a Congressional briefing attending by nine staffers, and credulous media followed along: a Boston Fox News affiliate called the coffee klatsch a “congressional hearing”, and Fox and Friends called the paper “an important study.” So the folks who want to leave our children vulnerable to preventable diseases, while dehumanizing persons with autism, think they have momentum on their side.
The anti-vaccine movement has little to cheer about these days. Its hero. Mr. Andrew Wakefield, is holding press conferences in gun club shelters, and sharing the stage with 9/11 Truthers. Jenny McCarthy has gone silent on vaccines, and can only write for the Chicago Sun Times on the condition that she avoids dishing medical advice. Dan Burton, once the poster child for right-wing zealotry and 20th century Know Nothingness, will be in fine company.
Just in time for World Autism Awareness Day, but too late for April Fools Day, Donald Trump tells us what he knows about vaccines and autism.
Speaking by telephone from his underground hair bunker, Donald Trump told the Fox and Friends couch potatoes this morning:
“I have a theory, and it’s a theory that some people believe in and that’s the vaccinations…When you take a little baby that weighs like 12 pounds into a doctor’s office, and they pump them with many, many simultaneous vaccinations, and I’m all for vaccinations, but when you add all these vaccinations together, and then two months later the baby is so different, and I’ve known cases. I knew a case, a two year old child, went for the vaccination the child was fine, a month later the parent was up in arms, didn’t know what was going on because the baby had just lost it.”
But most physicians say vaccines don’t cause autism, said Fox Friend number two. What say you, Donald?
“It’s very controversial to even say, but I couldn’t care less,” said the man who says Barack Obama is a Kenya national. “It happened to somebody that worked for me recently. They had this beautiful child, not a problem in the world, and all of a sudden they go in, they get this monster shot. Did you ever see the size of it? It’s like they’re pumping in, you know, it’s terrible, the amount, and they pump it into this little body, and then all of a sudden the child is different a month later.”
Trump prefaced his remarks by reminding America that he is great friends with Bob and Suzanne Wright, the couple who founded Autism Speaks in 2005. When the Donald held a fundraiser for Autism Speaks in December, 2007, he told a reporter that vaccines cause autism.
“When I was growing up, autism wasn’t really a factor,” he said. “And now all of a sudden, it’s an epidemic. Everybody has their theory, and my theory is the shots. They’re getting these massive injections at one time. I think it’s the vaccinations.”
One out of every 88 children in the US meets the criteria for an autism diagnosis, according to data released Thursday by the CDC. Two years ago the figure was 1:110. Two years before that 1:150.
It’s reasonable to ask what these numbers mean. Are more persons being affected by autism than before, or are more being detected? Has autism always been with us at the numbers we see today, or is there actually more of it?
It’s a complicated question, and one that will be answered with data and research. But Autism Speaks, the largest autism advocacy organization in the world, prefers the dictionary.
“According to Merriam Webster’s Dictionary, the definition of epidemic is “excessively prevalent, affecting a disproportionately large number of individuals within a population at the same time,” AS President Mark Roithmayr told reporters during a CDC conference call.
The epidemiologists who labored to produce this study would disagree, and Roithmayr knows better. But as president of the largest and best funded autism advocacy group in the world, it’s his job to keep the public alarmed. Autism Speaks has poured more than $173 million into scientific research and fellowships since 2005. Nothing attracts donors like an emergency.
“Exploiting statistics for financial gain is the name of the game, after all, and it’s what they do–the more they get the more they give to research,” writes Kim Wombles at Science 2.0. “Imagine if that call for money was about helping actual families now. Talking about family devastation and then asking for research money rather than money to help actual families right now misses the mark by a wide margin.”
Roithmayr’s lieutenants know the game. Peter Bell, AS’s vice president of programs, recently told a congressional appropriations subcommittee that “Twenty years ago, the experts estimated that one of every 2,500 children had autism,” and “Increasingly we hear the work epidemic associated with autism in America.”
Bell also knows better. Prevalence amongst 6 year olds in 1992 in the US was 19.1 in 10,000. That was the first year that collecting data on autism was mandated by statute. Bell’s 4:10,000 rate was reported in 1966, and then only for a small segment of the autism spectrum.
Autism Speaks head boffin, Dr. Geraldine Dawson, repeated her organization’s epidemic talking point on the Today Show just this morning. “We now have an epidemic of autism in the United States,” she said, “It’s very important that we have a national plan to address this public health crisis.”
Exploiting statistics for financial gain is the name of the game, after all, and it’s what they do–the more they get the more they give to research. Imagine if that call for money was about helping actual families now. Talking about family devastation and then asking for research money rather than money to help actual families right now misses the mark by a wide margin.
But facts and details only slow down the Autism Speaks fundraising machine. The truth about the new prevalence numbers may not be alarming, but it does reveal much about how autism is identified and tallied.
Counting autistic children is costly and time consuming. The CDC collects data from existing records in 14 sites (Alabama, Arizona, Arkansas, Colorado, Florida, Georgia, Maryland, Missouri, New Jersey, North Carolina, Pennsylvania, South Carolina, Utah and Wisconsin) to identify eight-year-old children with an actual autism diagnosis. Then the researchers comb over those same records looking for language that suggests a development disorder – “repetitive and stereotyped behaviors,” “poor eye gaze,” and “delayed speech” – are examples.
In the latest survey, 21% of the children identified with an autism spectrum disorder had no such diagnosis before the survey. In the 2006 cohort, that number was 23%.
In other words, 1:88 children is not diagnosed with autism. In the recent survey, it’s more like 1:115. This speaks to a large, undiagnosed population whose needs are not being met.
With all due respect to Merriam Webster’s Dictionary, this is not what an epidemic looks like.
Instead of inventing definitions and misleading congress, responsible advocacy groups focus on meeting needs. “These are not just numbers, these are real people with real needs” said Alison Singer, president of the Autism Science Foundation. “We have to focus on building the infrastructure to provide education and services to all of these people and their families.”
An anti-vaccine group masquerading as an autism advocacy organization broke an embargo of the CDC’s latest autism prevalence numbers, which will be officially released this Friday.
The “Autism Action Network” – A-CHAMP – blasted the following email about one hour ago:
Rumors are swirling that the federal government will release this Friday the next round of official autism prevalence statistics and the news will be grim, the “official” autism rate is expected to be 1 in 88, up from 1 in 110 in 2010, which was up from the 1 in 166 rate in 2008. Given the 4 to 1 ratio of boys to girls, the rate for boys is probably in the neighborhood of 1 in 48. The autism rate has doubled in four years. This is a public health catastrophe. And what is the federal government doing about this? Not much.
The new rate comes from a 2008 survey of eight-year-olds.. The 1:110 rate released in 2010 was from a 2006 survey. The 1:166 rate was from a 2004 survey.
What A-CHAMP conveniently omits is that the children surveyed in the latest report were born in 2000 – one year after vaccine manufacturers announced plans to phase out thimerosal from scheduled pediatric vaccines. If A-CHAMP’s vaccine/autism hypothesis held water, then we would see a decline in Friday’s numbers, since thimerosal was nearly absent from vaccine stockpiles by 2002. There is no decline, but A-CHAMP still thinks the nation is ignoring a catastrophe. It’s all in a day’s work for the folks that once called California’s Assembly Bill 499 the “California Pedophile Protection Act of 2011?”
It’s a shame that some news outlets will repeat A-CHAMP’s autism rumor without reference to the paper that accompanies the survey. In the 2006 study, 23% of the children determined to have an ASD had no known previous autism diagnosis before the CDC team evaluated administrative records in 12 states. Is it really a catastrophe when developmentally disabled children are finally identified, and receive the services they need?
When reporting on Friday’s numbers, also keep in mind:
Researchers have known for at least 15 years that the prevalence of ASD – when you combine severe cases of autism with the “higher functioning” forms – is close to 1:90.
It is important to identify children and adults with autism who need support, but are currently being overlooked. When the story is framed this way, the higher rate is a good thing – more autism identified means more people are receiving services.
“Autism” exists on a spectrum, and most of the increase is being seen among the less severe cases.
The more people are aware of autism, the more people with autism will appear in records, which is how the CDC makes its count.
As awareness grows, educators and mental health professionals are more likely to use terms in their reports like ‘stereotypical and repetitive behaviors’ and ‘poor joint attention. “These are code words for the records reviews people at CDC,” says Dr. Richard Grinker. George Washington University professor and author.
The growth in autism programs also leads to more diagnoses. “As the services increase, so does the range of programs designed for the spectrum,” says Grinker. “That leads to more cases because families need a diagnosis to qualify for these new programs.”
The Diagnostic and Statistical Manual (DSM) is sometimes called the Bible of modern psychiatry. First published in 1952 as DSM I, the reference book lays out the diagnostic criteria for most psychiatric conditions and illnesses.
The current DSM IV was published in 1994, then revised in 2000. And now it’s due for a rewrite. The DSM 5 (they dropped the Roman numerology) is expected to be released in May, 2013. Now this may not be as big news as, say, a Duran Duran reunion tour, or Kate Middleton’s anticipated baby bump, but it’s still creating a buzz among those who advocate for persons with autism. That’s no small constituency – 800,000 or more children and young adults have an autism spectrum diagnoses. When you add up all the parents, grandparents, aunts and uncles, you have an army of confused and anxious people.
The buzz kicked off last week with some news out of Iceland – an unpublished study looked at how proposed changes to the way autism is diagnosed might affect rates of diagnosis, and possibly treatment and services. The prognosis could be grim, according to the New York Times:
Proposed changes in the definition of autism would sharply reduce the skyrocketing rate at which the disorder is diagnosed and might make it harder for many people who would no longer meet the criteria to get health, educational and social services, a new analysis suggests.
The autism advocacy movement is a diverse crowd, and the report predictably set off howls of protest from some quarters. “The American Psychiatric Association did something very similar to this back in 1973 when they voted at their annual convention to remove homosexuality from the DSM,” was a comment left on one website. The implication, I guess, is that’s why we don’t have gay people anymore.
The silliness is endemic. An anti-vaccine guest columnist slipped by the gatekeepers at TheHealthCareBlog.com, to tie her cause to the proposed changes. “So why exactly is the APA changing what we call autism? How is this going to benefit children?” wrote the “media editor” for Age of Autism, a fringe anti-vaccine website associated with Jenny McCarthy’s Generation Rescue. “In the last 20 years, we’ve seen a 600 percent increase in a serious neurological disorder. No one at the APA is able to tell us what causes autism, how to cure it, or how to prevent it, but they seem happy to again play with the definition. We need to ask why this is happening.”
The autism news beat is a target-rich environment for any reporter willing to wade into the esoterica of psychiatry, epidemiology, and special education law. That’s one reason most autism coverage falls flat. In a time with when your typical Action News health reporter is underpaid and overworked, it’s not surprising that most autism coverage suffers from news attention deficit disorder. Autism reporting, much like autism itself, falls along a spectrum, from interesting and informative on one end, to shallow and meaningless on the other.
So how to cover autism, or more specifically, the impending rollout of how autism is diagnosed in DSM 5? Here are some tips.
Don’t assume an autism epidemic. The anti-vaccine movement pushes the epidemic angle to create fear, uncertainty, and doubt. But there is no evidence for an epidemic, and the increase in diagnoses over the last 50 years can be largely explained in ways that don’t presume a global conspiracy to poison children. “The high rates of prevalence and diagnoses today are instead evidence that scientists are finally counting cases correctly,” says Dr. Richard Grinker, author of Unstrange Minds (Basic Books, 2007). “This is a good thing, not only for the US but for the world, including cultures that have only just begun to learn about autism.” Grinker’s website is a great place to learn how the definition of autism has changed over the last six decades.
Be skeptical of any paper, especially ones that are unpublished. The New York Times article was largely based on an unpublished study by Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine . Volkmar once sat on the American Psychiatric Association panel that is writing DSM 5. He resigned, and may have an axe to grind with the APA. Beware of personal agendas. Dr. David Kupfer, chair of the DSM 5 committee, has publicly expressed concern about the “cost” of so many people (children) qualifying for mandated services.
A disability by any other name is still a disability. Federal special education law, specifically the Individuals with Disabilities Education Act (IDEA), doesn’t rely solely on the DSM. “That (autism) diagnosis may have some bearing, but it’s not the sole determining factor,” says Sonja Trainor, a senior staff attorney at the National School Boards Association. A diagnosis is not the same as a determination about whether a student needs special education.
Autism is currently defined by a “triad of impairment.” They are, simply put, deficits in socialization, narrow interests, and impaired communication. But the proposed criteria emphasize deficits in social interaction, along with restricted, repetitive patterns of behavior, interests, or activities, with far less emphasis on communication deficits. This leads to concerns that a child whose communication deficits eclipse his/her other issues may be passed over. But the argument makes little sense. Even if a child slips through the DSM 5 text, he/she could still qualify for services under a different diagnosis, such as communication disorder. Again, what matters is not the label, but whether a child’s disabilities are severe enough to warrant special education.
The IDEA Act was written for children. For adults with autism, services do depend on diagnosis, and that varies by state. Adults with autism are an under-reported story. Those who push the autism epidemic angle prefer to keep it that way.
Choose your sources carefully. Not every story has two legitimate sides, especially when the scientific evidence is heavily weighted to one side. Develop trusted sources who are familiar with those who are competing to have their voices heard. Case in point: the unpublished study that triggered two New York Times stories is based on the same data set which was exploited by anti-vaccine publicist David Kirby, who used the numbers to claim that “one-third of autistics recover!” This was supposedly evidence that the shadowy autism cure industry was on to something.
But the devil is always in the details. The children involved in that data set, which was collected from phone interviews, didn’t have confirmed diagnoses. Their parents merely answered questions such as “Has any medical person ever told you your child has an ASD?” and “Does your kid have an ASD now?” So the impressions of a school nurse, coupled with a parent’s incomplete understanding of a very complicated disorder, could easily lead to a wrong diagnosis. And when the diagnosis is corrected, years later, some will call it a “recovery”, or even a “cure.”
If I had to guess, I’d say the Volkmar study will stay unpublished. It’s too late to say that about fear mongering news accounts.