Lara’s Story Part 2: Vaccines and Autism
Mar 08, 2012

Today’s post is a continuation of Lara’s Story: Growing Up Anti-Vaccine.  Despite being raised in an anti-vaccine household, Lara Lohne looked to science to determine whether she should vaccinate her own children.  After much consideration, Lara weighed the risks and benefits and proceeded to vaccinate with her children with confidence that she was making the best choice for the health of her children.
As an unvaccinated child, Lara had suffered many vaccine preventable diseases first hand. Although she had survived, she recognized that there was always a risk that her children might not.  Besides, she certainly didn’t want to see her own children suffer in the same ways she had.  By vaccinating them, she hoped to minimize the risks of vaccine preventable diseases in her family.  However, she knew that there was one thing vaccines could not prevent…or even cause.
And that would be autism. 

I must admit that it was through conversations with a coworker that I began to suspect something might be wrong with my youngest son.  It concerned me so much that I started looking for information online. I read some of the stories and they sounded similar to what I was experiencing with my son – with the symptoms, the regression and the age at which it all started to become apparent. He was born in 2007 and by 2009 he had already begun Early Intervention. 

Oddly enough, due to financial constraints she was dealing with at the time, Lara had yet to vaccinate her son.

Perhaps that bit of fate was a good thing since I might have fallen back into the anti-vaccine sentiment if he had been vaccinated prior to his diagnosis.  I hadn’t heard about the vaccine/autism link until after we suspected something.  Then I recall thinking, “Wait a minute, he isn’t vaccinated so vaccines didn’t cause it in him.” It was just a few months later that Andrew Wakefield was discredited so I figured that was the end of that. I assumed common sense and science would set the record straight. But I forgot how all-encompassing the anti-vaccine feeling can be.

Lara was determined to do all she could to support her son and over the years she has become very involved in autism organizations to help promote awareness and education.  However, this has required her to navigate a rather difficult road – one that requires support and understanding from the autism community, while also accepting her conviction that vaccines do not cause autism.

For the most part, most people I know are personally more focused on the autism aspect then the vaccine aspect. If it does come up, it’s usually something along the lines of every other story I’ve heard from the anti-vaccine autism parents; after the MMR shot their child regressed into autism. My son had difficulties from the day he was born – sensory difficulties, sleeping and eating difficulties and then some regression which we started noticing at about 14 months. But he didn’t get his MMR vaccine, or any vaccine, until after he received his autism diagnosis. I share this with people in hopes that my statement makes it pretty clear where I stand on the issue. Typically that is enough to avoid any argument over the suggestion of a vaccine/autism link. 

In Lara’s experiences she has found that the online rhetoric regarding vaccines and autism is very concerning, as people are willing to say things that they may never say to another person face to face.

What I’ve discovered is that in real life, people aren’t nearly as vocal about it as they are on the internet. Luckily, I haven’t experienced much controversy with other autism families that I deal with in person. However it’s like another world on the internet. This becomes unfortunate because a few loud voices against something can sound like a thunderous crowd.  In my experiences, the majority of parents of children with autism DO NOT blame vaccines. It’s just the ones that do seem to be louder because they are focused on the vaccines rather than the real issue, which is autism.
I can understand that their feelings in this regard are strong, just like the feelings my mother had against vaccines.  Over the years, I have tried to use scientific fact and my own personal experiences to address the anti-vaccine mind-set and the autism community but they don’t want to hear it. I’ve been insulted, called a liar, and even told that my son can’t really have autism if he wasn’t vaccine injured. I’ve even been threatened with physical violence by those most strongly entrenched in the anti-vaccine movement. All this has taught me that when you are with parents of children with autism, DO NOT let the topic of conversation get around to vaccines.
When it comes down to it, I will always stick up for vaccines.  But I don’t go looking for fights. I don’t want to get beat down because of my beliefs if I happen to find myself speaking to someone who is fervently anti-vaccine.  And in my experiences, if they’re anti-vaccine, they tend to be fervent about it.
What’s most disappointing is that within the autism community emotions run very high when you are engaged in a discussion pertaining to vaccines.  Before you know it, your differing views on vaccines have caused you to lose a friend and a member of your support structure.  Families with autism need all the support they can get from one another and when vaccines come into the picture, it’s too easy for that structure to crumble. 

Despite the nasty criticism that she has encountered over the years, Lara continues to remain engaged in the support of vaccines .

I continue to voice my opinion on blogs and articles because these are the places people with questions will be.  They need to know that not every child with autism was vaccinated and not every parent of a child with autism blames it on vaccines. When I find new vaccine website I go and check them out and see if they are worthwhile. I do the same with autism pages, but unfortunately I find that too many of them are devoted to non medical treatments and ‘cures’ so I typically leave after learning what they are about. Since I have this unique perspective I sometimes feel an obligation to share my experiences. I do still read the research studies that come out and when my children get a new vaccine I make sure to read the VIS so I know what to look for with regard to any reactions. I keep myself well-educated on the science of vaccines because it is the science, not the personal experience, that will lead us to the truth. 

In Lara’s experiences, she has recognized that people often assume that she is anti-vaccine because she has a son with autism.   This is common at the doctor’s office or in casual conversations with other parents of autistic children.

I took my autistic son to a new pediatrician and I knew he was due to receive some vaccinations.   The doctor was all prepared to defend vaccines and explain why they were safe and necessary. Before he could get started however, I told him there was nothing that would keep me from vaccinating my son. I know what these diseases can do and I know he didn’t get autism from vaccines since he didn’t have them until after. He visibly relaxed and said he was grateful to hear that side coming from a parent.  He explained that it is much easier for him to give a child their vaccines when the parent is on the same page as the doctor and doesn’t try to fight it. As I understand it, my son is the only child in this doctor’s practice with autism.
In talking with other parents of children with autism, we often confide in one another about how we started to realize something wasn’t right with our children.  Several common factors start to come up; the age, the regression and then when the MMR shot is mentioned I make it clear that my son didn’t get the MMR vaccine. They show a very real shock when I say this and even though it isn’t said out right, it kind of makes it obvious that I’m not anti-vaccine. Why would I be if the vaccines didn’t cause autism in my son? Science shows vaccines don’t have a causal link to autism, so it’s hard for me to understand why parents, even those with autistic children, can’t accept this fact.  Instead they put so much credit on their own personal recollections which can be faulty and unreliable.

Lara is a fascinating example of how someone can mature in their reasoning and critical thinking skills in order to effectively understand and appreciate the science that has proven vaccines to be safe and effective.  But does Lara ever feel resentful regarding the anti-vaccine misinformation she had been fed for so long?

To a degree I do.
I know that if I had been vaccinated, I wouldn’t have had to suffer through mumps at age 6, or pertussis at 17 which left permanent lasting damage to my lungs. I was fortunate I didn’t get sick more often than I did. I have received an MMR booster and last June I got a pertussis booster, but I’ve also been thinking about polio and meningitis since I have no immunity against them.  If only I had gotten vaccinated as a child, it wouldn’t be something I would need to be concerned about now. I’m thankful that most of my life herd immunity has protected me, but if more people choose not to get vaccinated that even herd immunity won’t protect me and that is why I’ve become concerned.
At the same time I feel that my past has given me a unique perspective. I’ve been there. I lived the anti-vaccine way of life. Granted it wasn’t my choice at the time, but because I believed it so profoundly, I would have chosen it at the time if it was my choice. Now, after reading the information that is available, seeing the results of the latest studies being done and feeling quite entrenched in the vaccine/autism debate because I have a child with autism, I can speak from multiple perspectives in this regard.
Granted anecdotes aren’t proof, but the anti-vaccine people only have anecdotes with regard to their vaccine/autism claims.  They have no hard scientific fact. My story doesn’t match theirs. I’ve been fortunate to have 5 neurotypical children before my sixth child was diagnosed with autism.  I believe that helped me to see the differences in him from birth where others may not have been able to, especially if the experience autism with their first child.  I try all the time to tell them I understand what they are feeling, because I have been there. But science can’t be denied. If it is than that’s just cherry picking information to fit a particular belief system and won’t ever get to the truth of the matter.

Lara has shared her story here in hopes that it will help others, especially those people who may be entrenched in the anti-vaccine frame of mind or who are uncertain about the vaccine/autism link.

These diseases are dangerous. Certainly vaccines have their risks, but they are far less risky than contracting the diseases they can protect against. And vaccines don’t cause autism.  Study after study shows there is a genetic component. There are also environmental factors, but research shows they are prenatal, not perinatal. If a child is going to have autism, he or she will develop it even if they are not vaccinated. The markers for that were determined months prior to the child being born. The equation to bear in mind here is, without vaccines, it’s possible a disease could claim your child’s life before you know if they have autism or not. Personally, even if vaccines did cause autism, I’d still get my son vaccinated because I’d much rather have him alive, then dead.

If you have a child with autism, have you ever had people assume that you are also anti-vaccine?  If so, how do you handle the situation?  Have you ever felt that the anti-vaccine rhetoric within segments of the autism community prevents you from getting the support you need for your autistic child?  If so, how? 

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