When we first discussed moving to Texas with the kids, they wanted to learn more about armadillos. I pulled out my phone and went to wikipedia where I found something interesting. The nine-banded armadillo is unique in nature in that it gives birth to four identical offspring from a single egg - quad identical twins. The next thing I read is that due to their unusually low body temperatures, armadillos are susceptible to leprosy and humans can contract leprosy from handling armadillos (Source: http://en.wikipedia.org/wiki/Armadillo).
I immediately put down my phone and instructed the kids to never touch an armadillo. The last thing this family needs is a case of leprosy. Based on a single article written on wikipedia, I decided that the risk of a horrible disease was too much for the small gain of handling an exotic animal. That was the sum total of my “research”.
Although I had a knee jerk reaction to the thought of my children handling armadillos, I worry that far too many people are having a similar, and sadly needless, knee jerk reaction to vaccines. The key difference here is that my children’s lives have been enriched by animals. We have a family dog. My son has a pet hedgehog and snake. My daughter is cajoling me into getting her hamsters. If the leprosy-armadillo link turns out to be bogus, they will not have missed much. Unfortunately, for those who do not vaccinate based on the mistaken belief that there is a link between autism and vaccines, the result can be death. (Source: http://www.cdc.gov/vaccines/vac-gen/whatifstop.htm)
The decision not to vaccinate is usually made due to fear of a vaccine-autism association. I implore anyone who is considering not vaccinating to know two basic facts.
FACT ONE: Autism Spectrum disorder did not exist prior to 1994. Prior to the release of the Diagnostics and Statistical Manual of Mental Disorders (DSM) version IV there was only a diagnosis called “infantile autism” which is now referred to as “severe autism”.
(Source: http://autism.about.com/od/diagnosingautism/fl/Why-Does-the-Definition-of-Autism-Keep-Changing.htm)
In 1994, nursing school drop out and queen of the anti-vax movement, Jenny McCarthy, was gaining fame fresh after spreading her legs for Playboy the year prior. That same year, the DSM - the same manual that once defined homosexuality as a mental disorder (Source:https://confluence.cornell.edu/display/WWC/The+Evolution+of+the+Medical+Definition+of+Homosexuality), changed the definition of autism to autism spectrum disorder (ASD).
While it is true that autism rates have risen from 4 per 10,000 to the 1 in 68 which is cited by the anti-vax movement, it is perpetuating a lie by omission when they do not acknowledge the change in the DSM in 1994. It is often implied that the 1 in 68 have severe autism and not ASD or Asperger’s Syndrome.
“While everyone with an autism spectrum disorder has a difficult time with social skills and communication, people with severe autism are most likely to be entirely unable to use spoken language. They may also appear to take no notice of the people around them.” (Source: http://autism.about.com/od/autismterms/g/What-Is-Severe-Autism.htm)
Yes, if the much repeated 1 in 68 were incapable of communicating or engaging with people around them, there would be a tsunami and the panic would be merited. Except the 1 in 68 often referred to includes the high functioning, the Aspie’s, and those “on the spectrum”. To contrast, Aspberger’s Syndrome:
“The vagueness of the border between able and disabled has made Asperger’s controversial from the time it was coined as a diagnosis, in 1981, by English psychiatrist Lorna Wing. Wing named it after Hans Asperger, a Viennese pediatrician who in a 1944 paper had described four boys as sharing “a lack of empathy, little ability to form friendships, one-sided conversations, intense absorption in a special interest, and clumsy movements.” He called them “little professors.” (Source: http://nymag.com/news/features/autism-spectrum-2012-11/index2.html)
The reality is that of the oft mentioned 1 in 68 are children and adults who will achieve independence, hold jobs, and contribute to society. The reality is, there is no epidemic. The number includes people who are a little weird, a little off, a little too into their special hobbies. The Aspies do not necessarily need special services; some compassion, some understanding, a little leeway perhaps but they will not become wards of the state. Many will go on to full employment as scientists or engineers.
“The recorded prevalence of autism has increased considerably in recent years. This reflects greater recognition, with changes in diagnostic practice associated with more trained diagnosticians; broadening of diagnostic criteria to include a spectrum of disorder; a greater willingness by parents and educationalists to accept the label (in part because of entitlement to services); and better recording systems, among other factors.” (Taylor 2006) (Source: http://www.ncbi.nlm.nih.gov/pubmed/16919130?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA)
There are multiple ways to interpret data. For example, an alarmist headline reads “New Jersey’s Autism Rate is the Highest in the U.S.” (Source: http://www.northjersey.com/news/report-new-jersey-s-autism-rate-is-the-highest-in-the-u-s-1.752693)
Yet, go below the headline and you will read “Experts agree that New Jersey has one of the best systems for screening and diagnosing children with autism, which may have helped catapult it to the state with the highest rate.”
As parents, we want what is best for our children. It was with great trepidation that we had our own son diagnosed with ASD. However, the more we read, the more we saw the signs. In all of the literature in the autism community, there is talk using scary words such as “intervention” for children to prevent them from becoming even more withdrawn. We spent, literally, tens of thousands of dollars out of pocket on ABA therapy and had our boy enrolled in a state funded Head Start program.
Four years later, I found myself sitting with a neighbor in my backyard. Our children were jumping and laughing on the trampoline nearby. Somehow, the subject of Carson being autistic came up. The neighbor looked at the boy laughing and chasing his sister around the trampoline and a puzzled expression took over his face.
“Really? I wouldn’t have guessed.”
“He has come a long way and he was always high functioning, more like Asperger’s.”
“Oh,” my neighbor exclaimed, “it’s the good kind.”
Well, my neighbor wasn’t exactly correct. The services and the therapy my son has received have been hugely beneficial. Rather than be alarmed by New Jersey’s high autism rate, I would rather applaud the state for recognizing the condition and providing appropriate services. As for my son, he is still a bit of puzzle. I would never say that he is cured. I would say that we have found ways to effectively communicate with him, have ensured that he is mainstreamed, emphasized socialization, and continue to monitor his progress. He is a child that reads in the 98th percentile for his grade, but refuses to learn how to tie his shoes. He likes other kids, but would be just as happy spending his entire day playing Minecraft. Speaking of Minecraft… his special interests are all consuming. It started with Thomas the Train, which then morphed to Skylanders, and has only intensified in its latest manifestation - Minecraft. It is no ordinary hobby. I continually remind myself to be patient. To not insult his special interest, but attempt to redirect him. I cannot count how many times I have personally said, “Carson, you can tell me two things about Minecraft, but then let’s talk about something else.”
Yet, I can’t help but see myself in the boy. At the same time I was graduating high school in the top 3% of my class and securing a congressional nomination to a service academy, I had multiple friends independently state, “This is my friend, Evan. He’s book smart but has no common sense.”
If I had a dime for every time I had been accused of lacking “common sense”, I would be a rich man. Yet… with my son’s diagnosis, it forced me to do some self reflection. If ASD had existed in the early 80’s, perhaps it would have been me attending SNAPS classes (http://www.lwsd.org/SiteCollectionDocuments/For-Parents/SNAPS-Brochure.pdf). Even without these services, I have managed to get a degree, find gainful employment, have a long term relationship, and be a fair to midland father; but just about every woman I have ever dated and every employer I have ever worked for would have benefitted from me having attended charm school for Aspies. It’s a neurotypical world and I just live in it.
When you read 1 in 68 children are autistic, I would prefer it said, “1 in 68 are on the spectrum which ranges from severe and non-verbal to kind of quirky. More of the latter than the former which is still, in fact, exceedingly rare.” Further, studies have shown that when comparing apples to apples and comparing the same community and applying the same diagnostic methods that were used in the past the rate of autism has remained exactly the same. (Source: http://www.sciencebasedmedicine.org/the-increase-in-autism-diagnoses-two-hypotheses/)
In fact, vaccination rates are sadly plummeting and autism diagnoses are increasing. It is not the vaccines causing autism, it is a changed definition of the diagnosis combined with increased awareness. Which leads me to my next fact, vaccines DO NOT CAUSE AUTISM.
FACT 2: There is no link between vaccines and autism. (Source: http://healthland.time.com/2011/01/06/study-linking-vaccines-to-autism-is-fraudulent/)
More specifically:
- The original supposed linkage between vaccinations and autism was proposed in a 1998 article in the well regarded UK magazine The Lancet
- In this article, a statistically unlarge non-random sample size of 12 children were studied (http://en.wikipedia.org/wiki/Sample_size_determination)
- Even using a tiny sample size and cherry picked children, the data was fraudulently manipulated
- The researcher, one ex-Dr. Andrew Wakefield, was funded by trial lawyers looking to sue vaccine manufacturers
- Further, the ex-Dr. Wakefield had a patent on an alternative measles vaccine
- These blatant conflict of interests were not disclosed in the original publication
- Ten out of twelve of the initial co-authors retracted their support of the initial publication
- One could not be reached
- Which leave the ex-Dr. Wakefield with all of his conflicts of interest standing alone as the only person to still support the initial findings
- The Lancet took the almost unheard of step of officially retracting the article in 2010
- I refer to Mr. Wakefield as ex-Dr. Wakefield because in 2010, the ex-Dr. lost his ability to practice medicine in the UK
- The original supposed culprit of the vaccine-autism link, a preservative containing mercury known as Thimerosal, has not been used in vaccines for over a decade
- Regardless of the tiny sample size, conflicts of interest, and indisputable fraud; the medical and scientific communities took a very serious look at the supposed vaccine and autism linkage
- Over the next fifteen years, over 130 independent studies on this linkage took place
- The Cochrane Collaboration, an international non-profit organization dedicated to systematic reviews of the literature, written by and for scientists who understand critical appraisal examined the results of 31 of these studies which covered 14.7 million children in multiple different geographies
- As a result of examining 31 independent studies covering 14.7 million children, the Cochrane Collaboration has stated: “No credible evidence of an involvement of MMR with either autism or Crohn's disease was found.” (Source: http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD004407.pub2/abstract)
There you have it. Vaccines do not cause autism. To dispute this means to take the word of a rogue doctor with multiple conflicts of interest over multiple pharmaceutical companies (who try not to get sued), governments, nonprofits, and charities.
So if these are facts, why does the vaccine-autism meme continue to propagate? To a certain extent, I think it is very natural to find a cause for any given effect. Most blame vaccines for “regressive autism” - a disorder associated with normal child development until the child withdraws inexplicably and becomes autistic. Unfortunately, this disorder is probably not real.
With regards to regressive autism, regression itself might be less of a phenomenon of timing and more of a phenomenon of overlooked signs and accumulation of deficits to a critical threshold becoming apparent. The biggest weakness in the research on regressive autism is that it depends heavily on parent report. If parents are not catching the early signs, the continued development towards ASD may appear to be sudden. (Source: http://www.forbes.com/sites/emilywillingham/2014/03/27/does-regressive-autism-exist/)
For most, no amount of statistics and research can overcome a powerful emotional story and anecdotal evidence. However, emotions can be manipulated and “evidence” can be exaggerated to fit a certain narrative that allows us to create the cause and effect story we naturally seek.
Let’s take a look at one mother’s emotional and anecdotal story has influenced a movement to stop vaccinating. Jenny McCarthy originally stated:
“Right before his MMR shot, I said to the doctor, 'I have a very bad feeling about this shot. This is the autism shot, isn't it?' And he said, 'No, that is ridiculous. It is a mother's desperate attempt to blame something,' and he swore at me, and then the nurse gave [Evan] the shot," she says. "And I remember going, 'Oh, God, I hope he's right.' And soon thereafter -- boom -- the soul's gone from his eyes.”
This is absolutely tragic. A perfectly healthy two year old goes in to get a routine vaccination and the soul instantaneously departs from the child’s eyes. Horrors! Except it’s bullshit.
A few years later, Ms. McCarthy changes the story to the following:
“I don't think it was just the MMR shot that caused any kind of trigger with autism. I think it was a compilation of so many shots to a kid that obviously had some autoimmune disorders. So I would say maybe a couple of months, a month or so after the MMR, I started to notice some physical ailments such as constipation, rashes, eczema. That was like the first little sign. And then the train just kind of descended from there.”
In the revised telling of the story, her son gets the MMR vaccine and then after a month has some minor issues. This is hardly the same emotional impact as her first story where the boy receives the shot and his soul leaves his eyes. (Source: http://skeptico.blogs.com/skeptico/2010/05/frontline-vaccines-jenny-mccarthy-boom-the-souls-gone-from-his-eyes.html)
I don’t really fault Ms. McCarthy for looking for a cause for her son’s diagnosis. Personally, my wife was deeply emotionally impacted by our son’s diagnosis. I do fault Ms. McCarthy for changing her story to fit her bogus hypothesis and continuing to propagate this thoroughly debunked myth. Remember the facts here - rising autism rates is due to a changed definition of the disorder, increased awareness, and an increased willingness to get the diagnosis in order to qualify for increased services. The original supposed linkage between vaccines and autism was based on a tiny sample size, filled with conflicts of interests, completely redacted, and proven to be junk.
Vaccinations are not frivolous, like playing with armadillos. Vaccines have helped to eradicate diseases. Due to ignorance, parents are deciding to not vaccinate and these diseases are making a comeback. Outbreaks of measles and whooping cough are needlessly on the rise due to an irrational unfounded fear based on anecdotal evidence and emotional stories. The data, however, is clear and the choice should be easy. Do not listen to a fraudulent and redacted medical study or former a former Playboy playmate. Do not let preventable diseases, ironically, become a first world problem as leading charities are funding vaccinations in the third world (http://www.gatesfoundation.org/What-We-Do/Global-Development/Vaccine-Delivery).
Autism is real, but it is not caused or triggered by vaccines. Every dollar spent on another study debunking the autism vaccine link is a dollar wasted that could go to funding services for autistic children and adults. If 1 in 68 can truly be diagnosed, and remember this statistic is based on the 1994 definition of ASD including Aspies and the high functioning autistic, remember to be nice to the slightly weird and quirky. Autism has always existed and been just as prevalent as it is today, let’s not allow a changed diagnosis and fraud be the reason for allowing preventable diseases to return.
