Autism advocates and government officials testified in front of a congressional committee Thursday about the federal response to the dramatic increase in autism diagnoses in recent years.
One in every 88 babies born in the U.S. will develop autism, according to the Centers for Disease Control, a 23 percent increase since 2009 and a 78 percent increase since 2007. In the 1960s, autism was believed to affect one in 10,000 children in the U.S.
Members of the House Oversight and Government Reform Committee questioned representatives of the National Institutes of Health and CDC about research priorities and subsequent results. A second panel of autism advocates testified about concerns ranging from research to services for people with autism. See the video here.
Numerous congressmen on the committee harshly criticized the NIH and CDC for a lack of effective research results, while agency officials at times struggled to come up with answers. The safety of vaccines was discussed, an issue that NIH and CDC insists is not linked to the rise in autism. However, many parents still steadfastly believe vaccines are one of the causes of the disorder. Members of the House committee recounted instances in which parents told them of children developmentally regressing immediately after being subjected to vaccines.
Advocacy organizations told the committee that federal efforts should focus more on environmental causes and prevention research than genetic studies. Other advocates emphasized the need for treatment and services to help adults with autism function better. Children have been the focus of autism research, treatments, and services, while adults on the spectrum have to a large extent been ignored.
On the government panel were Alan Guttmacher, director of the National Institute of Child Health and Human Development at NIH, and Coleen Boyle, director of the National Center on Birth Defects and Developmental Disabilities at CDC.
The hearing evolved into a spirited discussion on controversial topics including the increase in autism, the safety of vaccines, and federal research priorities.
Rep. Darrell Issa (R-CA) chaired the committee, taking over for former chair Rep. Dan Burton (R-IN), who is leaving Congress at the end of this term after heading more than 20 hearings on autism. Burton’s grandson has autism, and the congressman is a proponent of the theory that mercury in vaccines is one of the causes of the disorder.
Burton noted that he is not against vaccines, but he is against putting toxic components in them. “I’m convinced that the mercury in vaccinations is a contributing factor to neurological diseases such as autism,” Burton said. “And my question to the presidents and CEOs of pharmaceutical companies has always been, ‘If there’s any doubt that the mercury in vaccinations can cause a neurological problem, then get it out.’
“Vaccinations that contain mercury should not, under any circumstances, be injected into any human being, especially children, who have a very fragile immune system. And children get as many as 28 or 30 shots before they go to the first grade. My grandson got nine shots in one day,” said Burton.
Mercury was taken out of most vaccines a decade ago, but it still exists in some vaccines.
Mark Blaxill represented advocacy group SafeMinds, and discussed the need for more environmental research into autism. Blaxill, the co-author of The Age of Autism: Mercury, Medicine, and a Man-made Epidemic, charged that the federal government has failed children with autism and their families by focusing too much on genetic causes. He asked the committee how an epidemic could possibly be genetic. The Harvard-educated Blaxill, who has a teenage daughter with autism, told the committee that before Johns Hopkins researcher Leo Kanner first identified autism in 1938, similar cases had never been described.
“Autism is a public health crisis of historic proportions,” Blaxill told the committee. “It’s devastating a generation of children and their families. We need to face up to the reality. Autism is a national emergency.”
Blaxill and several congressmen who criticized the NIH and CDC were often cheered by parents in attendance, many of whom believe their children developed autism after being injected with vaccines containing thimerosal, a mercury preservative. Several times Issa had to remind the audience to refrain from clapping. Members of the crowd also regularly shook their head and scoffed at some of the comments by Guttmacher and Boyle that defended NIH and CDC.
Rep. Elijah Cummings (D-MD) told Guttmacher and Boyle, “There’s something wrong with this picture.” He mentioned the large increase in autism rates, and said common sense says nine shots in one day is too much for an infant. “I wish you could see the people behind you. There are grown men and women crying behind you.”
Although vaccines were not intended to be the primary focus of the hearing, the safety of vaccines containing thimerosal along with the increase in the vaccine schedule over the past two decades became one of the dominant themes of the hearing. Another controversial debate was the massive increase in autism cases, which Guttmacher and Boyle stated was largely the result of better detection but that many autism advocates insist is a true increase.
As recently as a few years ago, scientists and federal authorities maintained that the causes of autism were nearly all genetic rather than environmental. However, while it is agreed that some children may be more genetically susceptible to developing autism than others, more and more studies are also linking environmental factors to the increase in autism.
A commonly held belief is that environmental or other triggers may cause autism in a child who has a genetic or immunological susceptibility to autism. Both Guttmacher and Boyle acknowledged that while most federal efforts have focused on genetics, there is a need for more research into environmental causes, and they promised that more is planned.
The federal Interagency Autism Coordinating Committee, established as a result of the Combating Autism Act of 2006 and headed by NIH, was roundly criticized by congressmen and advocates for conducting research that hasn’t translated to effective therapies, treatments, and services. The Combating Autism Act was reauthorized in 2011.
NIH and CDC have long maintained that their missions are based on research rather than services, although Autism Speaks Co-founder Bob Wright pointed out the irony of both agencies claiming this while being under the umbrella of the Department of Health and Human Services.
The NIH mission is “to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce the burdens of illness and disability.” However, other HHS Operating Divisions, such as the Administration for Children and Families and the Health Resources Services Administration are more focused on providing services, though NIH gets much more funding than those smaller arms of HHS.
Wright called for a National Strategic Plan with milestones and accountability to define research objectives and coordinate efforts on autism. The IACC has a Strategic Plan, but critics say it is too focused on genetics research, and it doesn’t coordinate enough with other federal, national and regional autism efforts in the areas of research, treatments, therapies and services.
Another focus of the hearing was the dearth of services for adults with autism. Once students turn 21, they age out of the school system, and services for employment and housing, as well as social supports are scarce.
Members of the committee, government officials, and advocates agreed that budget cuts in funding for autism would be devastating, with a potential “fiscal cliff” of cuts lurking at the end of the year.
The most controversial of many contentious issues in the world of autism is vaccine safety, one that became a focal point of Thursday’s hearing.
Vaccine Controversy: Background
Mercury is a known potent neurotoxicant that can damage the human nervous system. However, the Food and Drug Administration states that ethylmercury, the form of mercury in thimerosal, is safe in low doses, and is less toxic and excreted more quickly than methylmercury, the form found in fish and pollutants.
In 2004, the Institute of Medicine, an independent organization that advises the nation on health, released its Immunization Safety Review: Vaccines and Autism report that stated that thimerosal-containing vaccines were not causally associated with autism. In 2011, the IOM declared after another review, “Few health problems are caused by or clearly associated with vaccines.”
However, the controversy continues and shows no signs of ending. Many researchers and parents of children with autism have long maintained that a link exists between vaccines and autism. They cite the fact that symptoms of mercury poisoning mimic the symptoms of autism, dramatic behavioral and medical changes sometimes occur directly after the administration of vaccines, and the rise in autism has coincided with increases in the U.S. vaccine schedule. The CDC rapidly expanded the vaccination schedule in 1988.
According to a joint statement issued in 1999 by the American Academy of Pediatrics, the U.S. Public Health Service, and the American Academy of Family Physicians, there was “no evidence of harm” resulting from exposure to thimerosal in vaccines. The statement also said that as a precaution, “thimerosal-containing vaccines should be removed as soon as possible.” By 2003, thimerosal had been removed from most childhood vaccines.
According to the FDA website, “Thimerosal has been removed from or reduced to trace amounts in all vaccines routinely recommended for children 6 years of age and younger, with the exception of inactivated influenza vaccine.”
The FDA states on its website, “FDA is continuing its efforts toward reducing or removing thimerosal from all existing vaccines.” However, thimerosal is still used in some vaccines, including most flu shots. Most people don’t know that they need to ask for thimerosal-free flu shots if they want to avoid the mercury preservative.
The FDA Advisory Committee on Immunization Practices first recommended flu shots in 2004 for routine use in children 6 to 23 months of age.
Mercury and Pregnancy
CDC also recommends flu shots for pregnant women. The recommendation was recently expanded to all people over six months of age. In addition, the FDA warns that pregnant women should not eat certain types of fish because of their high methylmercury content. Much of the methylmercury in fish originates from coal mining emissions and other pollution.
CDC states, “Mercury's harmful effects that may be passed from the mother to the fetus include brain damage, mental retardation, incoordination, blindness, seizures, and inability to speak.”
Highlights from Hearing
The questioning of NIH and CDC by committee members reflected the frustration of parents in attendance and across the nation who believe the pace of progress in research and results has been off-target or too slow. Rep. Pat Meehan (R-PA), speaking of the parents, said that he had never seen a group with more frustration.
Summaries and excerpts from the hearing are below.
In his testimony to the committee, Blaxill said the CDC knew about risks of vaccines but covered them up:
“A CDC analyst also discovered in 1999 that higher levels of infant exposure to a mercury compound in vaccines increased autism risk more than tenfold relative to zero exposure. The analyst wrote about this result to his supervisors: ‘It just won’t go away,’ he said. But he and his colleagues used more statistical tricks and published a finding that made the risk go away.”
Vaccine critics have also questioned why the government hasn’t conducted studies of vaccinated versus unvaccinated populations. Rep. Bill Posey (R-FL), asked this very question of Boyle. She responded, “We have actually done a number of studies looking at the relationship between thimerosal vaccines and autism and other developmental disabilities…”
She was interrupted by Posey, who clarified the question: “So clearly, definitely, unequivocally, you have studied vaccinated versus unvaccinated?”
“We have not studied vaccinated versus unvaccinated,” replied Boyle.
“Never mind. Stop there. That was the meaning of my question. You wasted two minutes of my time,” said Posey.
The congressman from Florida then went on to ask what CDC did to ensure the integrity of studies that involved disgraced researcher Poul Thorsen, who worked on data that was used in part to disprove a link between vaccines and autism. In April 2011, Thorsen was indicted on 22 counts of Wire Fraud and Money Laundering.
“You know this guy is a humongous scumbag, one of the most wanted men on Earth, and you relied on him for data to determine whether thimerosal had a negative effect,” Posey told Boyle.
She replied, “Two studies don’t make a body of work.”
Before the conclusion of the hearing, Posey stated for the record that he learned that Thorsen was involved in 21 of 24 federal vaccine studies.
Burton addressed government agencies: “I would pray to you, beg you, to go back to FDA and HHS and say come on. Let’s get with it. There may be other causes. But let’s get mercury out of all vaccinations, which is a contributing factor. If you do that, you can go to single shot vials. It costs what a penny or two apiece, it won’t hurt anything.” Currently thimerosal is still used in vaccines with multi-shot vials.
Burton also called for the HHS Vaccine Injury Compensation Program to be made more user-friendly, so that parents can more easily collect funds when their children have been injured by vaccines. Since 1989, the VICP has paid 3,050 compensation payments, including $2,354,402,849.25 disbursed to petitioners and $92,790,487.47 paid to cover legal fees.
Rep. John Tierney (D-MA) asked Boyle why thimerosal was still being used in multi-dose vials of vaccines. Boyle responded, “I’m not a vaccine expert, but my understanding, and I will clarify for the record about this, is that multi-use vials are needed in certain contexts from an international or global perspective.”
Rep. Carolyn Maloney (D-NY) also questioned NIH and CDC about vaccines. “I must have had 50 different parents…say I had a healthy child, yet then they had 10, nine, six vaccinations at one time, and that child changed overnight and was knocking their head on a wall, and was a changed child…The verbal evidence seems so strong from so many people that they had a healthy child until they got vaccinated.”
She asked why the vaccine schedule increased so much in recent years. Boyle responded that they are clustered to ensure that children whose parents may not take them to the doctor regularly get the required shots.
In response to a question from Rep. Vern Buchanon (R-FL) on why the U.S. vaccinates children at a much higher rate than countries such as France and Finland, Boyle stated, “There is a body of evidence accumulated over the last 10 years, looking at the relationship between vaccines and that was evaluated in 2004, and again very recently in 2011, which didn’t support an association between vaccines and autism from a population perspective.”
Burton posed the question, “I’d just like to know why they took the thimerisol out (of vaccines) if there was no problem, and left it in just a couple.”
Guttmacher responded: “I think neither of us are vaccine experts and we’d be happy to look into that and provide additional information.”
Issa explained that future proceedings may examine the safety of multiple vaccine interactions, much like the committee is currently working with FDA to evaluate the safety of interactions of multiple pharmaceuticals, which have sometimes been tested as safe by themselves but not necessarily tested in combinations with other drugs.
Mercury from other Sources
Rep. Dennis Kucinich (D-OH) stated that the pharmaceutical industry donates millions of dollars to political campaigns, and he mentioned an obscure rider in the Homeland Security bill of 2001 that shielded pharmaceutical companies from lawsuits about vaccines.
Kucinich also cited coal companies as culprits in releasing harmful mercury emissions into the environment, calling for more studies about mercury from coal burning plants, which ends up in the food, air and water supply. “There are reasons why this Congress and this government has not effectively addressed this issue,” Kucinich said. “At the bottom of this you have special interest groups who would resist any deeper research on it, because it’s going to affect their bottom line. Meanwhile you have children all over the country turning up with autism.”
Kucinich noted that the FDA warns pregnant women not to eat certain types of fish because of high mercury content.
Increase in Autism
Another controversy is the rise in autism cases in the U.S., which numbered one in 500 in 1995, and has risen to one in 88 children in 2012, including one in 54 boys, according to the CDC. Both Guttmacher and Boyle said part or all of the increase can be explained by better diagnostic tools and greater awareness.
Blaxill disputed this claim. “Some observers have claimed this rise is not real,” he told the committee. “That numbers are going up because of ‘better diagnosing.’ While it is true that we now diagnose autism with better tools, that doesn’t mean there is some ‘hidden horde’ of overlooked autism cases. The old surveys didn’t just miss 99% of children with autism. Anyone who reads them will see the obvious: it’s clear the researchers were diligent in finding cases and confident that they found the vast majority of children. It’s horrible but true; reported rates of autism have risen simply because there are more cases of autism.”
Blaxill, whose views are echoed by many parents of people with autism, said federal authorities have not been completely forthright in their analysis of data: “In the financial world, the result of the pressure to manipulate numbers to provide the answers bosses want has a name - securities fraud. In medicine there are similar pressures: they’re called special interest politics and peer review and what the CDC has given us is the medical equivalent of securities fraud. All to avoid the inconvenient reality of the autism epidemic.”
It should be noted that many parents of children with autism do not believe in a link between autism and vaccines.
Maloney questioned the agencies’ claims that the epidemic may not be real. She asked NIH and CDC, “Detection would not account for a jump from 1 in 10,000 to 1 in 88. That is a huge, huge, huge jump. What other factors could be part of making that happen besides better detection?”
Guttmacher and Boyle did not provide any specific answers.
Interagency Autism Coordinating Committee
The IACC is a federal advisory committee that coordinates all autism efforts within HHS.
A common complaint by parents and other autism advocates at IACC meetings has been the lack of research conducted on services, or shortcomings in services facilitated by the government for the autism community.
The IACC, which began meeting in 2006, has increased its research into services somewhat in the past few years, although the organization is still criticized for focusing primarily on genetics and consisting of too many bureaucrats as opposed to parents, educators, and those who provide services to children and adults on the spectrum. A lack of coordination with other autism organizations has also been a common criticism of the committee.
Blaxill called for more accountability among those on the IACC: “Frustrating to most in the autism community, NIH spent most of that money on the great autism gene hunt while blackballing environmental researchers and defying parent concerns…In the face of a national emergency, government agencies, especially CDC and NIH, have performed poorly and behaved badly. We need accountable, new leadership on autism at the NIH and the CDC. We need an advisory committee that believes in combating autism, not one newly stocked with appointees who oppose the mission, who want us to surrender to autism and oppose prevention and treatment research.”
Blaxill said the IACC needs to focus on different priorities than genetics: “We need a Combating Autism Act that truly combats autism. We need to stop investing in the autism gene hunt and identify what has changed in the environment that could have possibly injured so many children. We need to conduct independent research into the great unmentionables, mercury and vaccines, connections that we’ve documented in the earliest cases.”
Guttmacher and Boyle defended the IACC, saying that the group has made progress, and will continue to do so. “There is an explosion of information, a lot more to be done, particularly on the environmental perspective,” said Boyle. “A lot more focus has been on the genetics, and I think that’s been a discussion at the IACC level. We need to be moving more into the non-genetic related aspects.”
Services for Children and Adults with Autism
Rep. Eleanor Holmes Norton (D-D.C.) asked the NIH and CDC what is being done about adults who slip through the cracks, who may have autism but were not diagnosed?
Guttmacher responded to her question with a question: “The question for parents of young adults and for the young adults themselves is trying to find the best fit in society in terms of employment…”
Holmes retorted, “In other words there’s nothing that we’re doing for them. It looks like we don’t have any mandated services for them…This is tragic, if we have not found a…way to accommodate an adult who may still become a functioning member in some way in society.”
Ari Ne’eman, President of the Autism Self-Advocacy Network, noted that in 2010, just 2.5 percent of NIH funding went toward research on improving the quality of services, while only 1.5 percent was allotted to research the needs of adults with autism. The vast majority of the funding went toward research on genetic and biological causes of autism.
Ne’eman also advocated for the increased use of communication devices for those who are non-verbal. In addition, he cited a need for racial, income, and gender gaps in autism to be closed.
Scott Badesch, President and CEO of the Autism Society, said the government needs to do a better job of providing services based on individuals’ needs. He cited long waiting lists for services such as employment and caretaking.
Michael John Carley, the Global and Regional Asperger Syndrome Partnership Executive Director, added that research is often based on the future, while services are currently starved for adults.
Bradley McGarry, the Asperger Initiative Coordinator at Mercyhurst University, described the successes Mercyhurst has experienced in providing education for Asperger students, a program that could be a model for other universities.
What was not covered?
Several autism issues were scarcely mentioned at the hearing. Among them was the controversy over the Measles, Mumps and Rubella vaccine, which has been suspected by some advocates to have a link to autism. Federal authorities state that the MMR controversy has been debunked, but some parent groups aren’t so sure. However, the committee did address the possibility that too many vaccines are administered in too short of a time.
Another issue that was virtually ignored was the increase of chemicals and pesticides in the environment, which multiple studies have linked with autism. Fetuses and infants have been shown to be particularly sensitive to environmental toxins.
The wandering problem of children and adults with autism was not addressed. Wandering and subsequent drownings are leading causes of death for children with autism, who are often prone to wandering, fascinated by water, and unaware of danger.
In addition, education and different types of therapies were hardly discussed.
A New Beginning?
In the past, Congress hasn’t criticized pharmaceutical companies and questioned vaccines to this extent, perhaps because of the large donations the companies make to political campaigns. It appears that those on the committee now may be placing a higher emphasis on the wishes of the voting public, based on the frustration committee members showed, echoing parents involved in grass roots advocacy efforts.
Several times it was mentioned that those responsible for deciding the directions autism research goes should listen more to parent groups, who are often highly educated about autism issues and have first-hand knowledge of the issues facing those on the autism spectrum, but are often ignored by scientists and policy makers.
Rep. Paul Gosar, (R-AZ) urged those involved in autism research to listen more to parents, who have valuable first-hand information. Gosar stated that he has Celiac Disease in his family, but that doctors often ignore dietary aspects of disease. Many children with autism improve on a gluten-free, casein-free diet, but often doctors and scientists don’t see parents as credible. “We should be focusing on the family. They’re telling you what’s going on,” Gosar said.
Burton called on parents and advocacy groups to continue their efforts, asking them to be “footsoldiers” and “get the message out.”
Blaxill called for more accountability in autism research efforts: “Ultimately, we need to face and answer the question, why are so many American children sick? We will only do that hard work if agency leaders are held accountable to the American people, not powerful interests in the medical industry. So we’re asking you, the members of the Committee for your help.”
Click here to watch a video of Blaxill's testimony.
Click here to read a transcript of Blaxill's testimony.
Autism and the Environment
Examiner.com has reported on numerous aspects of possible environmental causes of autism. Click on the articles below for more information.
- Autism advocate Lyn Redwood discusses mercury vaccine controversy, chelation, treatment and recovery
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