Lancet Retracts Controversial Autism Vaccines Paper.
Dan Childs and Lauren Cox ABC News Medical Unit
It was the scientific paper that served as a central pillar for the idea that vaccination could increase children's risk of developing autism.
Now, with a formal retraction from the Lancet, the medical journal which in 1998 published this piece of research by Dr. Andrew Wakefield, most researchers will view the study as if it had never been published in the first place.
In a statement explaining its retraction of Wakefield's paper, the Lancet said: "Following the judgment of the U.K. General Medical Council's Fitness to Practice Panel on Jan. 28, 2010, it has become clear that several elements of the 1998 paper by Wakefield et al are incorrect ... in particular, the claims in the original paper that children were 'consecutively referred' and that investigations were 'approved' by the local ethics committee have been proven to be false. Therefore we fully retract this paper from the published record."
"The Lancet is an enormously prestigious journal with worldwide circulation, so its action of repudiation is very important," said Dr. William Schaffner, chair of the Vanderbilt University School of Medicine's Department of Preventive Medicine in Nashville, Tenn. "The retraction puts another nail in the coffin of this awful, painfully erroneous study."
But the retraction is unlikely to close the Pandora's Box that the Wakefield study opened, other vaccination experts said.
"Unfortunately, the idea that vaccines cause autism is already out there and the damage has already been done," said Robert Field, professor of Health Management and Policy at the Drexel University School of Public Health in Philadelphia. "Years of research have clearly disproven a vaccine-autism link, yet many people continue to believe in it. If all of that research hasn't changed their minds, the Lancet's retraction is not likely to make much difference."
Dr. Gregory Poland, editor-in-chief of the journal VACCINE and director of the Mayo Vaccine Research Group in Rochester, Minn., called the Lancet's action merely "procedural."
"What is more important is that an investigator, on the basis of false pretenses, published a paper and propelled a controversial hypothesis forward that led to decisions among individuals and groups to reject vaccination, with resultant outbreaks of these diseases," he said. "The results are highly significant: millions spent needlessly, hundreds of thousands -- maybe even millions -- unimmunized, and a fog of suspicion cast upon vaccines."
On Jan. 28, the United Kingdom's General Medical Council (GMC) found Wakefield guilty of acting unethically during the time he conducted the famous case report of 12 children that questioned if a childhood vaccine caused a new form of autism.
Ethical Questions Dog Controversial Autism Study
Wakefield's hypothesis was that by combining vaccines for measles, mumps and rubella into a single shot, known as MMR, the vaccine weakened the immune system and damaged the gut. He said that this, in turn, led to the development of autism.
The GMC concluded that Wakefield participated in "dishonesty and misleading conduct" while he conducted the research. Specifically, it found Wakefield responsible for an ethics breach because he wrote that the children involved in the case report were referred to his clinic for stomach problems, when he knew nearly half of the children were actually part of a lawsuit looking into the effects of an MMR vaccine. Some children didn't have stomach issues at all.
Wakefield also failed to disclose he was paid in conjunction with the lawsuit, or that he had a patent related to a new MMR vaccine in development when he submitted the case report for publication.
Moreover, according to one of the findings against the doctor, Wakefield took blood samples from children at his own child's birthday party and paid them each five British pounds for their trouble.
Following the GMC's Jan. 28 ruling, Wakefield declined an interview with ABCNews.com, but issued a statement saying, "The allegations against me and against my colleagues are both unfounded and unjust and I invite anyone to examine the contents of these proceedings and come to their own conclusion."
The GMC ruling is unlikely to erase the apparently false connection between vaccines and autism from the public mind. Nor will it detract from Wakefield's positive reputation among some activists groups.
Following the GMC's decision, the advocacy group the Autism Society issued a statement in which it said it "strongly supports funding research into gastrointestinal pathology, as well as any links between this pathology and the symptoms of autism. ... In this field, Dr. Wakefield's contributions to our families and members are greatly appreciated and there are many who support him in his research efforts."
Wakefield Study Had Big Impact on Vaccination Rates
Similarly, the parent groups who stood behind Wakefield in rallies and in press statements say his theories have led to anecdotally successful treatment in their children and also doubt that a finding by the GMC will change any minds.
It is on this point that critics of Wakefield's work agree.
"In some ways I think [the GMC ruling] is irrelevant," said Dr. Paul Offit, chief of the Section of Infectious Diseases at Children's Hospital of Philadelphia, who has been twice threatened with lawsuits for critical statements he has made of Wakefield's work.
According to Offit -- and international studies supported by the CDC as well as a 2004 review of large international studies by the Institute of Medicine -- high-quality studies could not confirm Wakefield's hypothesis about vaccines.
Still, when the public got word of Wakefield's work, worried parents skipped vaccines, and the percentage of children who were not vaccinated in the United States rose from 0.77 percent in 1997 to 2.1 percent in 2000, according to an article by Dr. Michael Smith in the journal Pediatrics. A similar rise in children not being vaccinated occurred in Britain.
Although the U.S. Centers for Disease Control declared the United States cleared of measles in 2000, the lower vaccination rate brought back the disease in a 2008 outbreak. At least 131 cases were reported to the CDC, and 11 percent of the cases were hospitalized. A handful of children in Britain died of the measles around the time of the U.S. outbreak.
Since the publication of the 1998 article, Wakefield has left England and has set up an alternative research and treatment organization called Thoughtful House in Austin, Texas. On April 7, the GMC is scheduled to decide whether his ethical breaches constitute "serious professional misconduct" and if so, how Wakefield will be reprimanded or whether he will lose his license.
Regardless of the outcome, many vaccine efforts hope that this latest chapter in the debate over a connection between vaccines and autism will be the last.
"I think it is vital that the public and more importantly the press move past this issue," said Dr. Nancy Minshew, professor of psychiatry and neurology and director of the University of Pittsburgh's Autism Center of Excellence.
"It is time for a new script," she said. "In a time when scientists have discovered a prevention for ASD in infants and toddlers with the tuberous sclerosis gene, the public and press should be racing to understand how this came about and where the next discovery will come from."
Autism Called Urgent Public Health Concern; 1 in 100 Children Affected.
Nancy Shute US News
Almost 1 percent of 8-year-olds have been diagnosed with autism and related disorders, according to a new report from the Centers for Disease Control and Prevention. That number is not a huge surprise; the same figure was reported in another autism study in October. But it's not every day that the CDC labels a developmental disorder "an urgent public-health concern." Language like that could provide more momentum for much-needed research into the causes of autism and more funding to test and develop autism treatments. It's high time; parents seeking help for their children find many treatments and cures promoted but few that have been rigorously tested.
It's not clear why the number of children diagnosed with autism has increased so much. CDC data from a 2002 survey pegged the number at 1 in 150 children, while today's report, based on a 2006 survey, found 1 in 110 children affected. Four to five times as many boys are diagnosed, with 1 in 70 boys and 1 in 315 girls diagnosed with autism, according to the CDC's new numbers.
The increase in autism diagnoses could be a result of better understanding of the autism spectrum as distinct from other developmental disorders. The rise also could have something to do with the tendency of doctors, parents, and school districts to choose diagnoses where therapy and special education is more likely to be state-funded. That might also account for the big variations in autism diagnoses from state to state, with three times as many cases of autism reported in Arizona and Missouri as in Florida and Alabama. But "a true increase cannot be ruled out," Catherine Rice, a behavioral health scientist at the CDC's National Center on Birth Defects and Developmental Disabilities, said at a press conference this afternoon. Parents have been clamoring for more help from the big guns in medical research and pharma for years, but researchers used to look at autism not as a glamorous research topic but as a career-killer. That's slowly changing; in July, Pfizer, the world's largest pharmaceutical company, said it was going to work on developing autism treatments.
Parents seeking autism treatment face a bewildering array of choices, from chelation to hyperbaric oxygen chambers, none of which have been rigorously tested for safety and efficacy. Treatments touted earlier as cures have failed to measure up: one example is secretin, a hormone affecting liver and pancreas function that was popular until a 2003 trial found it did nothing to alleviate symptoms. And mainstream researchers have shied away from studying alternative treatments. Last year, the National Institutes of Health bailed on funding a study on the effectiveness of chelation therapy, saying it couldn't confirm that the practice is safe.
Parents have said loud and clear that they want more research now (if not yesterday) into the causes and treatment of autism. "It's about freaking time to get yourselves in gear," said one of the 290 people who filed public comments on what the federal government should do about autism research to the Interagency Autism Coordinating Committee earlier this year. "DO THE RIGHT THING!" wrote another. "Autism is rampant, and can't be caused by genetics alone. Don't waste more money on genetic research—start looking at the environmental triggers causing this horrific epidemic."
And I've copied this mom's comment in its entirety; because she cuts to the heart of how autism creates medical, emotional and economic challenges that threaten the survival of entire families:
"It is my opinion that the parents need more help. Many communities don't have enough support for the children and families. Many move to areas where more help is available which then puts stress on that community that may already be serving more children than they can afford. There should never be a waiting list, a waiting list is time lost for the child, and in a many cases it makes it impossible for the child to catch up or progress. I feel that immediately after your child receives this diagnosis every option should be readily available to them. I also believe that parents like myself should be offered some kind of mental health support or financial support as autism changes the entire life of the family. I am a single Mom raising a son with autism who is nonverbal well as a son with Asperger's. I have been financially and emotionally devastated and those are both difficult to overcome without appropriate help. We must study the affects this has on the parents and help them."
If 1 in 100 American children were diagnosed with cancer, I have no doubt that Congress and the White House would be scrambling to fund a Manhattan Project to investigate causes and develop new treatments. What does it take for the 1 in 100 children diagnosed with autism to get the same respect?
Autism: To Cure or Not to Cure
Connie Anderson, Ph.D. Kennedy Krieger Inst / IAN Community
The autism community is remarkably diverse. Some of its members have autism, some have Asperger's syndrome, and some have "pervasive developmental disorder not otherwise specified" (PDD-NOS). Some are parents, siblings, spouses or friends of a person on the spectrum. Circumstances vary widely, too. Some individuals have just received a diagnosis, and others have lived with the diagnosis and its realities for years. Areas of challenge and giftedness differ from person to person, and each person is in a different place in the life span and in their overall development.
It is no wonder perspectives on autism vary widely. Nowhere do they vary more widely than in two distinct views of the word cure. The meaning of the c-word and the emotions it evokes can be radically different depending on who you are talking to. The purpose of this article is to try to help everyone, no matter their perspective, gain insight into the other perspective -- the one that makes absolutely no sense or seems insensitive from where you stand.
What are these two disparate meanings? Cure as hope, as answer, and as healing...and cure as hurtful condemnation of a different way of being and thinking. You do not have to delve very deep into autism blogs, discussion forums, and chat rooms to find the clash between these two points of view.
Cure as Hope
In the dictionary, the word cure is most simply defined as "a means of healing or restoring to health; a remedy." It is a positive thing, a helpful thing, associated with alleviating suffering. If someone is dying of cancer or heart disease, and you cure the person, he or she is able to become well again. He or she is made whole.
In medical terms, autism is defined as a disorder, that is, a disturbance in physical or mental health or functions. It therefore lends itself to the notion of "cure." Imagine a parent with a young child who was developing normally, or nearly so, and then lost skills and changed personality. The child was affectionate, seeking cuddles and making eye contact. To his parents' delight, the child had begun to speak a few words. Seemingly overnight, all of that disappeared. Bewildered parents feel as if the child they had was snatched away to be replaced by someone altogether different. (Indeed, it has been suggested that folktales about changelings -- unaffectionate, rigid children left by the fairies in exchange for a healthy, happy child -- represent an older culture's attempt at explaining regressive autism.)
Modern parents do not seek explanations in folktales, but in medical science. Devastated and scared, they search everywhere for answers, trying to make sense of what has happened. Having watched Lorenzo's Oil, in which brokenhearted parents doing their own research helped move science forward to aid children with the same condition as their son's, parents search the net, occupy medical libraries, read everything, create their own theories, raise money for research. Meanwhile, they grieve for the struggles their child is going through, and for their own. Financial strain, marital conflict, and careers sacrificed are just a few of the possible side-effects of a determination to do right by a child with autism who may need many treatments or therapies and who, due to a variety of challenging behaviors, may be difficult to live with day to day. Loving their child, they do all they can.
It seems obvious to them that what is going on with the child is not healthy, not functional, not the way it is supposed to be, and not -- in the case of regressive autism -- the way it used to be. It is natural, then, to seek a way to restore the child to wholeness.
A parent on one discussion forum stated:
We need to find a cure...and remedy for this very sad illness that afflicts our children. I have started prayers, as well, and pray to God to heal these children.
When parents say they are seeking a cure, their words are imbued with hope and with love. They want to help their child be well again, to be him- or herself again. They want their child not to suffer, not to struggle, not to be teased or bullied, not to be disabled. They fear the hard road ahead for their child.
The notion that the word cure could have negative connotations may come as a shock.
Cure as Condemnation
The thing is, autism is not like cancer. It is not easily separable from a person, like a virus or a tumor. It is so much a part of a person's behavior, entwined with their way of taking in the world, and with who they are.
What that means is that there comes a point when an individual on the autism spectrum who is simply him- or herself may not want to be "cured." Being cured sounds an awful lot like annihilation, like giving up some struggles, but losing your selfhood and the good things about you as well. There are many adults and teens on the autism spectrum who share this view. Writes Jim Sinclair in his essay Don't Mourn for Us:
Autism is not something a person has, or a 'shell' that a person is trapped inside.... Autism is a way of being. It is not possible to separate the person from the autism. Therefore, when parents say, 'I wish my child did not have autism,' what they're really saying is, 'I wish the autistic child did not exist, and I had a different (non-autistic) child instead.' This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.
This may be a startling viewpoint for those who associate the word cure with hope and wholeness. Taken in historical perspective, however, it is not so startling.
A series of movements based on embracing marginalized identities arose in the twentieth century. Although each movement was different, they shared a core similarity: a group of people who were defined in negative terms by the dominant culture defied that definition to value who and what they were.
For example, stereotypes of African-Americans were overwhelmingly negative, and far too often internalized. It is one thing to have the dominant culture declare you stupid, lazy, or ugly. It is even worse to realize your children have taken this in at a very deep level, have come to believe it, to evaluate their own potential or appearance or worth based on it. In this context, the simple phrase "Black is beautiful" was a powerful act of resistance. "To be liberated from the stigma of blackness by embracing it," wrote James Baldwin, "is to cease, forever, one's interior agreement and collaboration with the author of one's degradation."
Movements founded on race, gender, ethnicity, sexuality -- all of these were based upon seizing an identity back from the dominant culture, to declare the worth, the strength, and the beauty of the group in a wholesale rejection of an earlier view of the group as inferior or bad.
Deaf Culture was the first instance of this in the realm of disability. Because many of the deaf were placed in special schools, away from home and the hearing community, they began to form their own culture and identity. They began to revolt against the view that they were defective people who needed to be cured of an affliction, dependent people who would always be at the mercy of paternalistic caregivers. Soon thereafter, a broader Disability Rights Movement arose. Like similar movements, it challenged a depressing view of people with disabilities that they had often come to believe themselves. Disabilities activist Nadina LaSpina, crippled since birth, wrote of a friend with spina bifida who had confided with desperation that she wanted to be a "real" woman and would rather die than be disabled. Looking back on her friend's suicide, LaSpina wrote:
I couldn't tell her 'We are real women, we can have a real life, we can be happy.' I didn't have the words yet. I couldn't tell her that it was our 'internalized oppression' that made her hate her disability and herself. I couldn't tell her that what made her so unhappy was not her disability but the way society treated her because of it.
In recent years, individuals on the autism spectrum have also united to resist definitions of them as broken or dysfunctional. They have called for neurodiversity -- an acceptance of all people, irrespective of their neurological wiring. It is in this context that individuals with ASD take exception to the notion that they need to be "cured." Said one individual on a discussion forum for adults with Asperger's:
I am who I am and most of the time I like me. A "cure" for my neurological differences would mean giving up a lot of what makes me, me. No way. A 'cure' would essentially mean the death of who I am now.
To try to get their point across, they have sometimes used humor. The purely fictional Institute for the Study of the Neurologically Typical turns the tables on people who are "neurotypical" (NT) by describing them the same way the dominant medical/psychiatric model describes people with autism:
What is NT? Neurotypical syndrome is a neurobiological disorder characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity.
Neurotypical individuals often assume that their experience of the world is either the only one, or the only correct one. NTs find it difficult to be alone. NTs are often intolerant of seemingly minor differences in others. When in groups NTs are socially and behaviorally rigid, and frequently insist upon the performance of dysfunctional, destructive, and even impossible rituals as a way of maintaining group identity. NTs find it difficult to communicate directly, and have a much higher incidence of lying as compared to persons on the autistic spectrum.
Tragically, as many as 9,625 out of every 10,000 individuals may be neurotypical.
Touché. Who wants to be described like that?
Transcending the Divide
With one group calling fervently for a cure and another declaring they want no such thing, it might seem unity could never be achieved. Fortunately, there are many who do not hold one extreme position or the other. Parents, sensitive to the fact their older children on the spectrum understand doctors only "cure" people who have something wrong with them, can find themselves as reluctant to use the c-word as some adults with ASD. To quote a mother posting on the IAN Discussion Forum:
Perhaps a cure would be throwing the baby out with the bath water. While it is true that people with cognitive impairment are overrepresented in the autism community, so too are people with exceptional giftedness overrepresented in the autism community. It seems that finding ways to channel the positive aspects of ASD mental architecture, while finding ways to breech its hindrances, would be a worthier goal. If I were to cure anything, it would start with the social attitudes that continue to stigmatize people with autism. How about changing Autism Spectrum Disorder to Autism Spectrum Differences?
Many adults with ASD have also come to express a nuanced view, saying that how a person feels about the word cure can depend on how deeply they are suffering with symptoms of ASD. A high functioning person with Asperger's who has a job and friends who share his special interest, for example, cannot decide for a severely affected person with mental retardation, no communicative ability, and multiple stimming behaviors that he or she should not ever desire a "cure."
What may be most useful is to not let the c-word get in the way of what everyone wants: a greatly improved situation for individuals with ASD and the alleviation of any suffering.