Vaccine and Autism - a fresh look

In the autism community there is a vocal subgroup who challenge the safety of vaccines.  Many dismiss these so-called anti-vaxxers; saying their allegations of vaccine causing autism are not supported by science.  In my decade of service on autism science committees I have met folks on both sides of this debate.  It’s tempting to look at an issue like this and say those on the other side are “just wrong.”  But I don’t feel that’s the right thing for me to do.

Raven at Joshua Tree  (c) John Elder Robison

Our government appointed me to advise on autism research and policy from the perspective of an autistic person and represent the autism community.  In that role I feel responsible to all people affected by autism - actual autistic people and their families.  Part of that responsibility is a duty to listen, even when views are at odds with my own.

I’m a believer in vaccination and the concept of herd immunity.  I absolutely believe vaccines save lives but recognize they are like any other medicine – taking them comes with some risk, as does skipping them.  The issue is how that risk is evaluated.  Our public health agencies know that a high percentage of the population must be vaccinated, if we are to stop the spread of target diseases. For that reason, CDC encourages the highest possible percentage of people to vaccinate.

In an ideal world, vaccines would be safe, or at least far safer than the risk of not vaccinating.  The question for people today is:  Do we live in that ideal world, or not?

It’s no secret that Americans have lost considerable confidence in government.  Sadly, that includes our public health agencies.  Americans are also deeply suspicious of pharmaceutical companies.  A look at the daily news is enough to justify their distrust.  For those who want more, a review of peer-reviewed papers on drug tests and approval in our government’s PubMed database should be enough to make anyone a skeptic.

But that’s just one side of the story.  In my government service I’ve met many people who have made careers in public health service.  Those folks are bright, dedicated, forthright and truthful. They are human, and surely possessed of the same fallibility as all of us, but in my experience, they have been trustworthy and deserving of my confidence and support.

There have been many times that I’ve turned to CDC or NIH scientists with technical questions.  I’ve always gotten answers and explanations and I’ve never had cause to doubt what I was told.

Stories in the NY Times, the Post, and other major media regularly cast doubt on pharmaceutical companies, and what they disclose about drugs.  In the past decade there have been hundreds of articles detailing instances of drug companies hiding or suppressing unfavorable reports of drugs, and there is considerable evidence that significant information has been withheld from regulatory agencies during the approval process. 

Popular media stories are backed up by peer-reviewed articles that say essentially the same thing.  Clinical trials that are funded by drug companies are far more likely to report favorable results than trials conducted by independent nonprofits.  Last year Anna Falk Delgado at Sweden’s Karolinska Institute found significant bias toward favorable results when one or more of the researchers owned stock in the company whose drug was being tested.

Why should we be surprised by that?  The clinicians doing tests on behalf of drug companies are no doubt bright dedicated scientists.  But when their financial security seems to hinge on a “good” outcome it may be too much to ask that they be impartial.

It seems obvious that the answer is for all clinical trials to be run by truly independent third parties, who make all findings available for public review. Until that happens I think the public will show ever-increasing skepticism toward our health services and drug companies.  It’s a mystery to me why this has not already happened.

People who read about drug companies hiding unfavorable information are more likely to question how medications may affect them.  In some cases people feel they have no choice. For example, someone with an infection is likely to take the prescribed antibiotics.  But vaccination feels less critical to many people and when offered a drug from a source they don't trust, some decline.

In light of today’s questions about government and the pharmaceutical industry, is a person wise to question the wisdom of vaccination?  There are several answers to that. One view is the self-serving one.  If most other people are vaccinated, the chances of you getting the disease are minimal. So, it won’t matter if you skip it and avoid the risk.  That thinking breaks down when thousands of people feel the same way, and it’s led to outbreaks of measles and other formerly suppressed diseases among unvaccinated populations. 

Public health officials around the world are rightly concerned about growing public resistance to vaccination.  On a population-wide scale the risks are very real.  The most troubling aspect is that the resistance is essentially based on mistrust of public health agencies which is more and more a worldwide issue, one with dangerous ramifications.

Others feel the government hasn’t shown us vaccines are safe.  As evidence of danger they point to the hundreds of millions of dollars awarded to people who filed claims with our government’s vaccine injury compensation board.  While the dollars seem significant, a closer look reveals that on average, only one in a million vaccine recipients was awarded compensation for possible vaccine injury. That’s not a very big risk, but how do we put it in perspective?  Let’s look at measles.

There are 330 million people in the USA, and in 2014 (the last year we have records) just 670 of them came down with measles.  When I was a kid, prior to measles vaccine, almost everyone got it. Today the chances of an unvaccinated person getting measles are about 1 in 500,000. 

What are the chances you’ll be injured or killed if you get measles?  We can answer that with CDC data from the early 1960s before a vaccine was developed.  Roughly 3.5 million people came down with measles every year, and 50,000 ended up in the hospital. 500 died.

If we assume one-quarter of the people who were hospitalized had injures that would be equivalent to those in people who make vaccine compensation claims today, we could say the odds are as follows:

·      If you get vaccinated for measles you have a 1 in a million chance of settling an injury claim

·      If you don’t get vaccinated, you have 1 in 500,000 chance of getting measles in the USA

·      If you travel to countries where measles is more common, your odds of catching it rise

·      If you get measles you have a 1 in 270 chance of serious injury or death

The numbers are clear.  You are safer getting the measles vaccine than skipping it.  Furthermore, if skipping the vaccine becomes widespread the whole population is eventually put at risk.

So why is there a controversy?  First, most people don’t know where to look for the data I presented and simply don’t know the odds, which favor vaccination. Second, many don’t trust the numbers the calculations are based on. Third and perhaps most significantly, people have begun to wonder if there are specific human phenotypes who are more at risk for vaccine injury.  That is the one objection that is impossible to quantify.

If you read that autistic people have compromised immune systems it’s not a big leap to go from there to asking if autistic people are more at risk from vaccines, which work by stimulating the immune system.  Possible connections between immune dysfunction and autism are reported regularly.  At the same time, the vaccine advice goes both ways.  Some vaccines are recommended for people whose immune systems are compromised, because they are at greater risk.  Other vaccines should be avoided by people whose immune systems are compromised, because they are more vulnerable.  With a suggestion that autistics may be particularly vulnerable, and seemingly conflicting vaccination advice, I understand why some people feel safer opting out. The odds say we should vaccinate, as a population, but as individuals with autism, it’s not so easy to answer because autistic vulnerability is not fully understood and quantified.

Issues like that are the hardest part of my autism advocacy.  As I said at the outset, I believe in the benefits of vaccination.  At the same time, I’m fearful of the vulnerability of our autistic population.  I choose to get vaccinated as recommended, including my flu shots.  I have never suspected any vaccination I ever received has anything to do with my being autistic.

When a person tells me that they think vaccine made their child autistic, I keep in mind that one in a million statistic for vaccine injury settlements.  But I also consider this:  Science shows us that perhaps 2/3 of autism has a genetic basis.  It’s surprisingly common to see families like mine - where my dad was autistic and so is my son. The other 1/3 is what we call idiopathic – meaning there is no connection to the family, and no identified cause.

When I consider that 1/3 of autism cases occur like that – out of the blue – and I consider the statistics which show those tend to be the most disabling cases of autism, I am reluctant to tell someone they are wrong about whatever they imagine caused the autism.  I would love nothing more than to have a positive answer, backed up by science.  One day that may happen.

But I have to face reality – it may not happen.  A significant percentage of human disease and disorder is idiopathic.  I can’t begin to list all the conditions that happen with no known cause.  Deep down there may be a reason for everything but we humans may be a long way from unraveling it.  Until then, many people prefer faith and belief and for some, that is what this is. 

The argument that “being born causes autism” is true for me and many others, but it’s definitely not true for all of us.  Science is showing us more and more environmental factors that may be implicated in autism.  Vaccine isn’t one of them but until we can say with certainly what factors do have an effect, suggesting vaccine doesn’t is a non-starter for skeptics. One day I hope we can answer idiopathic causation questions positively, because it’s really a mystery.

Those of us who were born into families where autism and neurological difference are common often have a hard time seeing that, because we tend to take our differences for granted, and since we feel we inherited our autism we think of everyone else being the same.  Sometimes that are, but other times they’re not. 

For now, I’ve concluded it’s best for me to respect other people’s opinions and choices and hope the day soon comes when we can restore trust in government and public health, answer people’s questions about autism and the environment, and make better decisions together.

I trust the large-scale public health studies that looked at autism in vaccinated and unvaccinated populations and found no difference in autism rates.  I’m familiar with studies that show populations that supposedly “have no autism” really do, when examined with current screening tools. I also recognize that general mistrust of government leads some people to doubt those same results.

That whole line of argument is really a red herring, because as I say at every opportunity, the reality is that we are autistic today, and that’s not changing.  We have many different needs, most of which are poorly met.  There are many pressing concerns for our community, like increased vulnerability to disease, housing concerns, poor employment records, our social isolation, and more.

We should not separate into warring factions over differences in causation or attitudes toward vaccination.  I know it upsets some for me to say it, but vaccination or not is just one risk in a life full of risks.  The truth is, you are a thousand times more likely to be hurt in a car accident than by your vaccination decision, whichever way you go.  Our individual opinions about causation are much less important in the scheme of things than our actual lives, here and now.

If you are autistic or you have an autistic family member I hope you accept that there are probably many paths into becoming autistic, but once diagnosed, we are all in this together.  Your challenges may be different from mine, or the same. Rather than fight each other, we must join together and work toward a common goal of better support, security and quality of life.

The scientists are working to answer the questions of how and why. Let's all do our best to help guide that science in a productive direction, with more autistic people are joining that effort every day.  One day, we will get there, but that needn’t delay us in the push for quality of life now.

(c) 2018  John Elder Robison

John Elder Robison is an autistic adult and advocate for people with neurological differences.  He's the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William and Mary in Williamsburg, Virginia. He's also a visiting professor of practice at Bay Path University in Longmeadow, Massachusetts and advisor to the Neurodiversity Institute at Landmark College in Putney, Vermont.  

The opinions expressed here are his own.  There is no warranty expressed or implied.  While reading this essay will give you food for thought, actually printing and eating it may make you sick.