Culture

Some Thoughts on Vaccines

There is no proof that vaccinations are responsible for a rise in the rates of autism or any other neurological disorders. That is a fact of scientific record. There is, however, clear and unambiguous proof that vaccinations are responsible for the eradication of diseases that have killed millions of human beings and that populations inoculated from those diseases will become vulnerable again if the unvaccinated population grows to a certain level.

And so, we should all vaccinate our children unless there is new information that would change our certainty of any of the previously listed facts.

That’s the disclaimer I need to lead with in order to have a different type of conversation about vaccinations and the political flap surrounding them than the one going on via memes and Russian troll farms on the internet.

I have three sons. My middle son is twelve years old and has been diagnosed with Autistic Spectrum Disorder. He has limited verbal skills and as best as we can tell, some cognitive deficiency. When he was two, he had an extreme reaction to the H1N1 vaccination. He was sick for days. Shortly after, he regressed in speech and awareness. Within months he went from a child who had met all developmental milestones to one who no longer spoke or engaged with anyone or anything in the outside world.

At 12, he has less conversational speech than he did at 2.

We have heartbreaking videos as proof.

We have no proof that his vaccination was related to his regression. When we expand the known data sets beyond our N of 1, and the representative heuristic, that thing that overvalues recent experience in determining the likelihood of future occurrences, there is no link between the two events. What we can say, with certainty, is that after his reaction to the H1N1 vaccine, my son was never the same again.

Today, my wife and I run a non-profit that supports parents of special needs children by providing free therapy and counseling. Through that experience, we’ve learned that our experience is not uncommon.

I don’t know what it all means. But the Bayesian in me tells me that we should keep asking the question and adjust our beliefs appropriately as new information is discovered. The special needs parent in me tells me I’m allowed to think that.

All of my children, however, are vaccinated.

There’s much to unpack with regard to the vaccination discussion. It’s an extreme analog to many other political discussions. There is a broad population that requires that we all cooperate in order to achieve a common societal good. There’s a much smaller subgroup whose lived experiences have led them to question some of the conventional wisdom of that cooperation. There is an authority charged both with the administration and safety of the activity. There is some scientific or academic community that weighs in with an opinion of record. And there’s an expanding fear on both sides of the debate driving emotion.

So how should we approach the problem?

One way is to agree that we’ll all vaccinate our children, even if something we’ve missed enters into the scientific record and effects how we feel about instances of neurological damage as it relates to vaccines. And then perhaps we could even agree on a limit to that cooperation.

When is the juice just not worth the squeeze any more? 1% increase in likelihood of neurological disorder? 5%? 10%? 50%?

Should we be afraid to ask that question?

In reality, the number we should be willing to live with that buys us a world with no small pox, measles or polio is likely higher than we think. It’s worth noting, I get some broader license to say that because I have a child with autism. If I didn’t, some would find it insensitive.

Such is the unproductive asymmetries of politically charged discussions.

There are two things we are freed up to discuss openly if we can get beyond those malformed politicized discussions though.

The first is that the medical world is nowhere near as effective at using data to determine things as many might think. The hygiene and amount of the data that professionals require, in fields where it is available to make important decisions, is tremendously high. Instances of clean, repeatable observances exist in the tens of thousands before we claim statistical significance.

Ask Facebook or Google how much volume they run through an A/B test before they declare a winner.

That standard of data does not exist broadly in the medical research domain. Trials contain sample sizes in the dozens, not tens of thousands. And subjects are observed in noisy environments with nearly endless variables that are difficult to control for.

Ask the behavioral psychology community how fun the “replication crisis” has been after they’ve declared things to be true that they can’t replicate at all because they came to the conclusion after seeking truth in too narrow and too noisy a set of samples

Does this mean that I don’t agree with the data that is part of scientific record regarding vaccines?

No.

Does it mean that I believe that there’s enough noise in the data for something of significance to be hiding? And therefore we should continue to do the work to quiet the noise? Or the that medical community at large needs to figure out how to start collecting and using data on a 21st century scale?

Yes.

The second thing we get to do when thinking beyond the boundaries of political discussion is to think creatively; even engage in thought experiments.

Consider the following scenario:

A pre-natal genetic mutation in the womb impacts how a child’s immune system develops after birth. We don’t quite understand the mutation or what causes it. But we can see clearly through genetic testing that it is there. After birth, a shock to the child’s immune system causes serious health issues because the previous genetic mutation has impacted the child’s immune system. This shock could be an exposure to antibiotics that doesn’t enable an already abnormal immune system to develop correctly, an overly sanitized environment common only in the developed world or one of any other number of things that interact with an already abnormal immune system. This shock does not cause the health issues as others without the genetic mutation receiving the exact same shock are not impacted. The cause is the genetic mutation.

In consideration of this scenario, a question can be asked. Is there work to be done to understand the shock and its role in the medical issues? What types of forces lead one to answer “no” to that question?

The above scenario is not a hypothetical. It is also not autism. It’s the latest research on childhood leukemia done by Professor Mel Greaves of the London Institute of Cancer. Like autism, childhood Leukemia occurs predominantly in developed countries, and barely at all in undeveloped countries.

Greaves on his research: “I have spent more than 40 years researching childhood leukemia, and over that time there has been huge progress in our understanding of its biology and its treatment, but it has always struck me that something big was missing, a gap in our knowledge — why or how otherwise healthy children develop leukemia and whether this cancer is preventable.”

Imagine if he weren’t allowed to say that there was a gap in knowledge without getting overwhelmed by a wave of politicized anger.

Few are calling Dr. Greaves a quack. And no one is accusing parents of children diagnosed with leukemia over cautious helicopter moms. But they are doing the work to understand how infections and their impact on the immune system play a role in the disease, without political nonsense.

This type of thought liberation brings us to a potentially better discussion about vaccines and autism.

It starts by acknowledging that choosing not to vaccinate your children puts them and others at risk with undeniably more certainty than anything we know about vaccines and their impacts on neurological disorders. It continues by acknowledging that insisting that the science is settled and wandering away from it without re-evaluating it as new information becomes available is how we get science wrong.

There is still much to be learned about the neurological disorders that do horrible things like change a typical two year old into a non-verbal, cognitively impaired child and future adult. Currently, the medical community explains this event to parents with a collective shrug.

“We don’t know what it is that took your child from you but we’re certain it wasn’t that.”

That explanation leaves parents to find answers on their own. And if we don’t want them wandering into false culprits, then we might consider doing the work to find the real ones. If the CDC doesn’t want people questioning vaccines, then maybe they might work to find out why my child can’t talk. “The brain is complicated” is an insufficient answer. There are a half dozen kids in his class whose brains have been complicated just like his. Complicated is not random. And when things aren’t random, they have a cause.

Find it.

Lastly, we should consider, before we share snarky memes or The Onion articles smashing anti-vaxxers, that someone’s lived experience was more than enough to lead a reasonable person to the conclusion that their child’s reaction to a vaccine played some role in their child’s permanent, heartbreaking disability.

That last one requires compassion and empathy. And I get that it’s hard. But don’t fear. There is some self-serving utility to it. Because we should always seek to understand why someone believes something most of us agree to be wrong.

The easy answer is because they’re just crazy.

The harder answer takes work.

And that work is often where progress lives.

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6 replies »

  1. Thank you for this very thoughtful, insightful, and very personal essay on the inflammatory subject of vaccines. One of my kids had a severe reaction to the first of the 3-part DPT vaccine. We decided with much help from the medical community not to continue with the next 2 shots in the series—not because of fears of autism, but fears of an anaphalactic allergic reaction. 18 years later he contracted whooping cough ( that’s a sneaky one because its harder to correctly diagnose and treat before the cough sets in— there is no tell-tale rash—and it is out there. ). The disease of the 100 day, rib breaking cough. I am sometimes mean-spirited enough to want anti-vax folks like RFK Jr and Ms Paltrow to hear their child gasping for breath between bouts of vomit producing coughs and not be able to do a damn thing about it. Mercifully, there were no long lasting effects for my son. But that experience made me all the more in favour of vaccines.

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  2. This is really well done. I especially liked this part, “Does it mean that I believe that there’s enough noise in the data for something of significance to be hiding? And therefore we should continue to do the work to quiet the noise? Or the that medical community at large needs to figure out how to start collecting and using data on a 21st century scale?”

    Thanks for sharing your story and for providing some thought provoking points. I hope the best for your son.
    -Eric

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  3. What an irresponsible article! The anti-vaccine movement deserves no sympathy whatsoever. Herd immunity is declining in some areas because ignorant people are refusing vaccines. Lack of appreciation for scientific expertise places human life in danger.

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    • The article expressly tells parents to vaccinate their children and provides credible scientific record as to why vaccines don’t cause autism. If it is irresponsible to ask people to use empathy to understand differing perspectives than I want to be clear that the claims of irresponsibility are aimed at that.

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