As doctors we used to think that the Internet was an evil, dirty place.  At once point it was.  Look at the story of vaccines and autism.  What started as a fraudulent MMR-autism connection by Andrew Wakefield was ultimately buoyed up and fueled by the mob.  The vaccine-autism connection will down in history as one of the health infosphere’s greatest failures.

The racket held Google’s spiders at gunpoint.  “Communities” like Age of Autism (look for Hell to freeze over when you find a link here) served as the center of community for a pseudo-empowered group of parents brainwashed into thinking that the best course of action was to threaten heroes like CHOP’s Paul Offit and pediatricians who had spent the better part of two generations struggling against deadly childhood diseases.  Brainwashed young parents echoed the conspiratorial voices of a vocal minority fueled by corrupt information.  It was a generation of young parents lost in hyperspace and disconnected from reality.

Call it bad crowdsourcing with dangerous implications.  Epidemic groupthink under the auspices of Jenny McCarthy.

CNN recently declared the vaccine-autism connection finally over.  While I’d like to agree, the vaccine-autism connection was dead before it ever began.  But Age of Autism trudges on like a drunk zombie tragically disconnected from the rest of the world, still angry and playing the victim of monsters like me.

Whenever I hear ‘information is good’ I think of the great autism-vaccine hoax of the early 21^st century.  All I can think about is the number of young, impressionable parents who fell as frightened victims to the echo of misinformation.

Let it be a lesson to all of us who turn to the hive for information.

 

A national survey of parents published in today’s issue of Pediatrics suggests that the prevalence of autism spectrum disorders (ASDs) is 1 in 91 U.S. children. The study, “The Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorder Among Children in the United States, 2007,” draws on data from a survey conducted jointly by the Health Resources and Services Administration and the Centers for Disease Control and Prevention.

I expect this study will get a little press.

How is this report explained?

Until now the prevalence of autism had been estimated at 1 in 150 based on an ADDM study from 2002. The authors of this new study suggest the increased prevalence might be partly explained by differences in the ways the surveys were conducted. The current inclusion of milder forms of autism, pervasive developmental disorder and Asperger syndrome could be increasing the number of children diagnosed with ASD.

Keep in mind that this study is based on parent reports of diagnoses that were given to their children by community physicians. It may not be as accurate as a study based on data validated by record review or direct testing. It may not be the accuracy of parents, but the accuracy of clinicians in an atmosphere of demand for a diagnosis.

Increasing autism prevalence may be an example of “diagnostic substitution.” Changes in the way the diagnostic criteria are applied contribute to diagnostic substitution, whereby children who would have been given a different diagnosis (e.g. mental retardation or language disorder) in the past are now diagnosed with an ASD.

And this is important: Previous studies have shown the average age of diagnosis is decreasing, which leads to an increase in total prevalence at any one point in time. While we have many estimates of prevalence, we do not yet know or have accurate estimates of rates of incidence (onset of new cases).

It must be the vaccines

Assertions that toxic effects of the measles-mumps-rubella (MMR) vaccine or a combination of thimerosal-containing vaccines are responsible for the increase in prevalence of ASDs have been incontrovertibly refuted by an Everest-sized pile of epidemiological studies originating from different countries throughout the world. The weight of all of the scientific evidence overwhelmingly favors rejection of the hypothesis that there is a causal association between vaccines and ASDs.

In countries with different patterns and timing of immunizations, the rates of ASD are not different than in the U.S. Further, there’s no evidence that changes in the vaccine schedule or the components of individual vaccines are causing a higher prevalence of autism.

Why did some children “lose” their autism diagnosis?

This was an interesting finding in the study: About 38 percent of the children who were ever diagnosed with ASD were no longer reported by their parents to have diagnosis.

But diagnosing ASD in very young children can be tricky. Some of these children may no longer meet the criteria for ASD as they grow. ASD may have been initially suspected on the basis of a developmental screening, but subsequently ruled out and never diagnosed.

And unfortunately, some children with developmental delay, intellectual disability, and learning disabilities may have been initially classified as having ASD to help them get publically funded services. Of interest, children who had “lost” their ASD diagnosis were more likely than children without ASD to be diagnosed with other developmental or mental health conditions, such as ADHD, anxiety problems, or behavioral problems.

As pediatricians we have work to do. While comparison between the 2002 ADDM study and the current CDC study illustrates the precarious nature of autism epidemiology, it appears that ASDs are to some extent more common than they used to be. But why and at what rate remains to be seen. The Kogan study will serve as an important point of reference in our slow march towards understanding autism.

 

In an attempt to save what remains of his ramshackle reputation, Andrew Wakefield took to the airwaves tonight in Dateline’s A Dose of Controversy to pitch his long-disproven theory linking autism to the MMR vaccine.

For the unaware, Wakefield’s crafted study published in Lancet in the late 1990’s sparked a worldwide panic over the MMR and its relation to autism. The paper was ultimately retracted by Lancet when numerous irregularities were revealed. And since that time several independent studies involving thousands of children have failed to show any connection between vaccines and autism as suggested by Wakefield. But the world has been unable to let go of Andrew Wakefield and his concocted ideas.

Tonight NBC’s Dateline told the story.

With Matt Lauer on the record declaring the issue as a ‘controversy,’ the deck was stacked against Dr. Paul Offit and the rest of the thinking world who have witnessed the ever-growing mountain of evidence against the autism-vaccine link. Offit, a Professor of Pediatrics at UPenn/Children’s Hospital of Philadelphia, has been a vocal champion of vaccination and archenemy of those looking to link immunizations with aberrant neurodevelopment.

Despite predictions that the piece would create more questions and in turn embolden the vocal antivax minority, Lauer orchestrated an evenhanded story. And when truth is on your side, evenhanded is good.

As far as the key players were concerned, Offit was disciplined and on cue refuting the claims of autism’s false prophets. Wakefield was … well, he was Wakefield: sanctimonious and self-obsessed.  Brian Deer, the reporter who blew the whistle on Wakefield, represented the evening’s most compelling character.

I believe this revealing story represents Wakefield’s last stand. Based on his deteriorating base of supporters and his pending General Medical Council investigation for professional misconduct, I would be surprised if he ever sees the light of prime time again. The world is finally moving on.

Congratulations Mr. Lauer and NBC for responsibly presenting the facts in a way that lets the world see Andrew Wakefield for what he is: A charlatan who’s greed and reckless actions have undermined the work of a generation of pediatricians.

 

Recently Facebook connected me with some old friends from the neighborhood where I grew up. It’s amazing to connect with friends who have been out of reach for so long. But social networking can uncover some real differences.

Last week I commented on Jenny McCarthy video that pokes fun at her anti-vaccine agenda. Some of my Twitter posts feed into Facebook. This was picked up by one of my childhood neighbors who I learned has a son with autism. She took real offense to my link and sent along a message making her position clear.

While I felt bad that I may have been insensitive, I found myself in a strange position: Do I temper my contempt for the anti-vaccine movement in the face of a friend with an autistic child who may feel passionate about a connection? Should I feel comfortable making my case with a mother living with an autistic child? After all, who am I to tell a mother that she shouldn’t believe what she understands in her heart? Tricky stuff.

The side of me that supports parents as active participants in their child’s care wants to offer some weight to their opinion. As someone who makes a living working with moms I sincerely believe in their expertise and intuition. But the side of me that understands the  history and epidemiology of vaccines and autism wants to put a stop to anything perceived as a controversy.

So in the end, despite the passionate beliefs of some close friends and dear patients, I take a firm public stance on the issue of vaccines and autism.

Perhaps more importantly I keep an open mind to the potential genetic and environmental contributors that might be part of the autism puzzle. We would be smart to take our lead from Allison Singer, former executive vice president of Autism Speaks, who recently resigned her post after recognizing that the vaccine-autism connection was losing its legs.

I was once told by a PR professional that “as the mother of a disabled child you can’t attack Jenny McCarthy.” While I recognize the dangers of criticizing Jenny McCarthy or any mother struggling with an autistic child, it’s important that we put a critical light on discredited associations and those who promote them.