#vaxfax On vaccine fears, adverse reactions to vaccines, autism as "vaccine injury" and parental beliefs

This week is vaccine awareness week  for blogs that are interested in reality- or science-based approaches to health.

As a lay person (that is, not a physician or public health professional) I want to bring my perspective to bear. 

I have a number of posts queued up, but I want to start not with the science, but with emotion and memory.

When I started writing online about vaccine issues, and the lack of connection between autism and vaccination, in about 2006,  I did so because somebody dear to me was immuno-compromised.  I thought if I just explained the facts, I'd be persuasive.

My own children are now adults and have children of their own.   I'm hearing more from young parents and their fears.  It is individual parents, one at a time, who make the decision to accept all vaccinations for their children, or none, or some combination.  

And mostly, it seems to me, what motivates parents to avoid some or all vaccinations is fear. 

You remember that old game of "Telephone", where you whisper a message around a circle?   The message becomes progressively more garbled.  This is what I think is causing parents' fears -- messages originated by professional anti-vaccinationists, like Joe Mercola, Barbara Loe Fisher, Mayer Eisenstein, Suzanne Humphries, Andrew Wakefield, and the like.  The professional anti-vaccinationists aren't constrained by truth or reason, and their entire method of operation is to spread fear, uncertainty, and doubt (FUD) about the safety and efficacy of vaccines.  They deserve all the scorn and contempt reality-based vaccine advocates can heap upon them.

But the individual parents who hear and believe their messages?  Not at all.  They need their fears acknowledged and addressed.

Other things on my mind:

I am old enough that I had what are now vaccine-preventable diseases.  The two I remember most clearly are probably:  mumps, during which I rested my head on a chair by my bed and drooled into a basin on the floor, because it hurt too much to swallow; and measles, during which I tried to walk from my bed to the bathroom, and could not, and lost control of both my bladder and bowels.  I still remember the shame.  Why would I ever subject my children to such suffering if it were safely preventable?

When my daughter was not yet six, somebody very dear to me lost her son, a few months older than my daughter.  The boy had a brain stem glioma.  From diagnosis to death was less than a year. 

I have never given any credit to the vaccine-causation theory of autism, either the discredited Wakefield gut-measles meme, or the "autism is a unique form of mercury poisoning" meme.  The Wakefield theory all along struck me as footless.  The measles vaccine had been given since 1968  and the measles-mumps-rubella vaccine had been given since 1971.   If the measles vaccine was responsible for autism, why wouldn't the increase in incidence have begun in the 1970s?  The "mercury poisoning" notion struck me as equally without value. 

To me,  high vaccine uptake rates for infectious diseases are a social justice issue. The burden of vaccine-preventable diseases fall disproportionately upon the poor. 

A couple of weeks ago, my blog-pal Lesbian Dad went to a meditation retreat lead by the Buddhist nun and teacher,  Pema Chödrön, and came away with some nuggets.  Here's the one that resonates with me the most:

Don’t close your heart or mind to anybody. (Least of all one whose heart or mind you wish to open.)

Last month I took part in two online debates over vaccination.  The first was in the comments section of a post of Shannon Rosa's at the Shot of Prevention blog, Why My Child With Autism is Fully Vaccinated, and the second was a post at KQED's Quest Community Science Blog, Health Officials to Consider Tightening Vaccine Exemptions. 

So many of the most vociferous anti-vaccine commenters have children, even young adults, with severe behavioral and cognitive challenges.  Those commenters blame vaccines for their children's challenges, and they are deeply, deeply angry.

It is so easy, and so foolish, to respond with anger instead of compassion.  Yes, they are repeating lies and misinformation about vaccines -- but lies and misinformation fed to them by the professional anti-vaccine forces, those that profit from them. 

I'm going to try leading with compassion and the light of truth. 

 

Comments

[Lisa R]

I admire that you can have patience with people who are so vitriolic. You're right that they need compassion - but it's hard.

[Autism Spectrum Disorder]

Its very informative and innovative too ..the vaccine-causation theory of autism should known by all coz its really usefull ...http://www.youtube.com/watch?v=mQVTXSgd2Cg i feel very sad for the kids who suffeering from austim ...Let us pray for all those lovely kids...

[Gmthul]

How would you address a parent who has 1 child who suffers anaphylactic reactions to vaccines and a 2nd child who experienced proven vaccine-related encephalitis and is still dealing with the consequences (and will be for life)? Do you advocate for exemptions or delayed schedule availability for those families or individuals who have a health-related reason for requiring them? Just curious. Coming from the opposite side to read your opinion.

[Chris]

Gmthul, of course your children have valid medical contraindications for vaccines.

This also means you must very vigilant that everyone your children come into contact with have been vaccinated. You have the right to request the vaccine status of all of those who come into contact with your children. It would help if you had actual medical documentation (something that you would need for puplic school entry in many states, especially Mississippi and West Virginia).

My son had seizures as an infant, and could not be vaccinated for pertussis. It turned out that at that time there was a pertussis "epidemic" in the county (the numbers are now even higher). Read about that experience by clicking on my name. Fortunately vaccines have changed, and he has outgrown seizures and was given the Tdap when he was 18 years old (it turns out he has hypertrophic cardiomyopathy with obstruction, and if he had a pertussis coughing spasm there is a very real chance of blocking off his mitral valve and sudden cardiac death).

[Aparentsprspctv]

I am going to suggest an alternate position here.

both sides in this equation think the other side is the ones doing the lying.

personally while i believe vaccines are the likely cause of autism i dont necessarily believe you are lying by fighting against it i just feel that like us you dont have the complete information.

i continue to vaccinate my children but as i posted on my blog when my youngest gets her vaccines we will be going with a full and complete video record of before, during and after periods because the records will be used if her present condition changes.

we are also going to change the times of the vaccinations so that the approx time of life theory cannot be used if it does change.

so while we seriously hope that she does not develop autism we are preparing.

i will not swear to autism being caused by vaccines but genetics only accounts for 2% combined so the other 98% must have a different cause and the likelyhood is that it is environmental of some form. vaccines are the present target and if they are not the cause then you would think the pharmaceuticals would do everything in their power to identify exactly what is to take the pressure off themselves

[Chris]

i will not swear to autism being caused by vaccines but genetics only accounts for 2% combined .... hen you would think the pharmaceuticals would do everything in their power to identify exactly what is to take the pressure off themselves

Can you please provide a citation for the 2%?

Also, which pharmaceuticals are you referring to? Since the data show vaccines have not casual relationship to autism (see the journal studies list at http://www.immunize.org/journalarticles/conc_aut.asp ), which drugs do you think are the culprits? What research would you propose?

Remember, my son had a history of seizures before any medication. He also suffered seizures while suffering from a now vaccine preventable illness. This in no detracts from your experience, but you do have to understand there are those of us with children who have been adversely impacted by disease.

So you really must look at the whole picture.

Oh, and very good idea to get video before and after.