Don't Use My Autistic Son as a Reason Not to Vaccinate

Shannon Des Roches RosaShannon Des Roches Rosa isn't the sort of woman you'd expect to see on Capitol Hill, advocating for vaccines for children. After all, when Rosa's son Leo was diagnosed with autism in 2003, the California mom swore off immunizing her kids. Her youngest child, India, was 3 by the time she was vaccinated. And yet, today, at 10 India is fully vaccinated, as is Leo and Rosa's older daughter, Zelly.

Rosa is the mother of an autistic child who came around to the safety of vaccines. And after allowing fear to rule her life for four years, she's become a vocal advocate for life-saving immunizations, working with the United Nations' Shot @Life campaign, Voices for Vaccines and other organizations to spread the word about vaccine safety.

As mother of an autistic child, the editor of Thinking Person's Guide to Autism says she feels it's her "ethical duty" to speak out on the behalf of vaccines ... and her son.

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Rosa spoke to The Stir from her California home about why she vaccinates ... and why she refuses to let her son be used as a fear tactic in the war against vaccines.

Tell us about what was going on when Leo was diagnosed in 2003:
It was hard because you know ... like most parents in our community, I came from outside the disability community, so I only had negative stereotypes in my head. All the media stories at that time were that autism was the very worst f--king thing that could ever happen to your child and your life was going to be over.

It's hard because I was so ignorant, basically!

At that point, what was your thought about vaccines and autism?
At that point, I believed what the media said. There were so many reports at that time about vaccines causing autism and I didn't know enough scientists and science-oriented people in my own life to really understand that it was all bullshit and it was all manufactured and there were a lot of conflicts of interest.

This is something that the media really took and ran with and didn't really rely on science either, so I wasn't really alone in my ignorance.

Initially I believed it.

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I remember reading on your blog that you waited to get your youngest child vaccinated until she was 3. During that time, did you have any fears of your kid getting sick?
No, not at all. Nobody had ever seen measles or pertussis ... because they'd all been vaccinating.

It's one of these things -- the irony is nobody knew what vaccine-preventable disease looked like because they'd been protected by vaccines. There was no reason to fear what you didn't know.

So what made you decide when India was 3 to stop the insanity so to speak?
So the pediatrician I had when I decided to stop vaccinating took his Hippocratic oath very seriously and he kicked us out of his practice for not vaccinating. In hindsight, I totally respect that.

We found a new doctor and what I did was I eventually interviewed a few doctors to see if they were OK with having us not vaccinate. The doctor we ended up having -- she was fantastic. Every time that we came in, she would just talk to us about what the risks were and why it might be a good idea, and she would do so in a completely non-judgmental and very informative way.

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Combined with the media swinging around to realizing that all of the science underlying the anti-vaccine movement was bunk, after awhile I realized that I was actually putting my kids at risk.

I started vaccinating, and within a year they were both caught up.

When you made the decision to change and get kids vaccinated, what was the reaction from other people in the autism community?
The thing is I tend to hang out with pretty smart, compassionate people. Even thought many of my friends did not necessarily change their minds the way that I did, we were still able to be social and be friends and just to agree to not talk about it -- kind of like politics.

When did you really start really digging into the science? Was it before you decided to vaccinate India and get Leo back on track or after?
It was during that time and afterward. There was kind of a time and you can go back and see it -- because I've been blogging about autism and parenting since 2003 -- you can go back and see on my blog where I was like well, maybe there's sort of a risk or maybe we'll just do it slowly. It was definitely a process.

Did you slow vax?
Yeah. It's so funny in hindsight. But the turning point is I was lucky enough to meet some autism parents who did understand the science and who were, in fact, scientists. They were nice about it, but they were like, "Oh, Honey, come on."

Then when Andrew Wakefield had his article that started the whole modern vaccine panic withdrawn -- it was retracted by the Lancet -- that was great because suddenly the media was paying attention.

Although it was problematic because Jenny McCarthy came out around the same time with her BS, but the media started taking the science perspective more heavily. And now, unfortunately, we've got outbreaks of vaccine-preventable disease so the mainstream media has to take it even more seriously.

It used to be that they felt they had to give it a kind of balance, but that was a false balance because there's science and then there's BS. They don't have equal weight.

It also really helped in 2011 when the book The Panic Virus came out, and Dr. Paul Offit's book came out, and these really thorough investigations of why all of this was so problematic and how parents are really preyed on using fear and how hard it is to unscare somebody once you scare them.

There are a lot of studies done showing that once parents have been scared about vaccines, you can give them all the great information you want but sometimes it just make them dig even harder into denialism.

The thing is that most parents have questions. Really what parents need to do is answer those questions.

What has made you not just someone who vaccinates her kids but a mom who feels she should be an advocate for vaccines?
I feel it's my ethical duty because the anti-vaccine community has done so much harm and hurt the confidence in vaccines, especially since I was part of that community for a long time. You realize that you've committed such a grievous error you have to do everything in your power to make up for it.

How do you feel that being mom of an autistic child plays a role in how people look at you when you talk about vaccines?
I think for a lot of people it gives me maybe more authority? Because not only am I saying they don't cause autism but my kid is fully vaccinated. I'm not only not afraid of it, but I'm for it.

It's really, really important for parents like me to be out there on the front lines talking about vaccine safety because none of us want our kids to be sick and die but like I said before, most of us don't know enough about vaccine-preventable diseases to be afraid of them.

They're just blithely ignorant.

Nobody wants there to be more outbreaks of diseases to force people to get vaccinated or change their minds, but unfortunately that's what we've seen happening in the last year.

How does it feel as the mother of an autistic child that kids like your son are used as a fear tactic?
It makes me furious. Because that's the thing -- our kids already are at a disadvantage because of so much misinformation about autism, and this just makes it worse.

It makes me really angry that people consider him "vaccine injured" and will endanger their own children when there's nothing behind that at all. There's not scientific reason, there's no medical reason to do that.

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Unless your child has an immune condition, there's no reason not to vaccinate, certainly not autism. There's studies of millions and millions of children that have never been able to establish a link between autism and vaccines.

That phrasing is pretty important because people will say "you just said vaccines don't cause autism," but no, I said "they've never been able to establish a link, nobody's ever been able to prove that there's a positive link."

You have to be really careful when you're talking about science. You can't prove a negative.

Right, how do you disprove whether it's that or something else?
I tend to look to the experts on this, like Dr. Paul Offit. He says it's always reasonable to have questions about vaccines. The great thing is that these questions can be answered.

I don't think there are any medical procedures out there that have been tested for safety the way vaccines have. People always say, "show me the safety studies," and I say, "how many thousands of them do you want?"

When people are scared, there's very little you can do to chance their minds, so what people really need to do is get good information out there and not let them be scared in the first place.

The line needs to be "vaccines are safe, they don't cause autism."

Do you vaccinate? Why or why not?

 

Image via Shannon DesRoches Rosa

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