This is the second part of Amy Wallace’s (website) (twitter) tweet session following up her amazing article in Wired Magazine. It includes a number of the letters she has received in response to the article both positive and negative.
As with yesterday, I have decided to consolidate this in to a blog post that is easier to read for those who, like me, find it annoying trying to read bottom to top and in such short snippets. Again the only changes I have made have been the adding of paragraphs (something not possible in 140 character tweets) and the occasional full stop, comma or space. Other than that, the section in block quotes below is directly as they came from her twitter stream.
I just heard from the 280th person who has taken the time to get in touch. Yesterday, I gave you a taste of some of the bitterer missives. Those have kept coming.
A minute ago, J.B. Handley, the founder of Generation Rescue who I told you about yesterday, wrote me again. He called me a “cry baby.” If you’re interested, as I am, in the way people like Handley use gender and sexuality as weapons to bully their opponents read this: scienceblogs.com/…
But for every acidic email, I’ve gotten four so heartfelt they would make you cry. Like this from a mom in Redmond, Washington: She writes,
“Our oldest son, now 10, was diagnosed at age 3. He showed some signs of autism from a very young age… Autism will never kill my child. But many diseases targeted by immunizations sure could.
The autism community burns time, resources, and, most importantly, credibility, chasing toxic ghosts. These resources instead could and should be spent on research – not just for cures, but for interventions to help kids and adults with autism live and thrive. But helping a child with autism learn to do an everyday task such as brushing teeth, or helping an adult on the spectrum secure a job bagging groceries won’t land you a spot on Oprah’s couch.
Finally, as a parent of a child on the spectrum, I find the anti-vaccine crowd pushes a false choice that is ultimately demeaning. The anti-vaccine crowd is saying it’s better to risk one’s child dying of a preventable disease than it is to have child with autism. These folks have never spent a day with my son. He has taught me more about parenting and life than any typical child ever could.
Autism is NOT a death sentence, although many would have you believe this is the case. And that is truly a shame.”
Whew. If that got you in the solar plexus, you might want to sit down before you keep reading.
During the past week, I’ve heard from several parents of autistic kids who have been shunned for supporting vaccination. I’ve heard from parents of children with immune deficiencies who depend on herd immunity and fear playdates with unvaccinated kids. I’ve heard from a dad whose three-year-old daughter died of the flu, and from another dad whose son got encephalitis after he and his wife argued about vaccines, and he lost.
More than one marriage has foundered on the rocks of the vaccine debate. One dad of an autistic boy wrote that his wife
“has bought into the vaccines = autism argument.” He said she calls him “a Nazi, a baby killer, and an unfit father because I don’t agree with her conclusions.”
He faulted anti-vaccine websites such as Age of Autism for feeding vaccine panic.
“They are not only endangering people’s health,” he said, “they are destroying relationships.”
Another dad wrote:
“My wife and I battle about vaccinations for my daughters every year.” Of the Wired article, he said, “I am going to send it to her and she is going to rip my head off.”
I’ve heard from lots of scientists.
“I am just beginning to appreciate the need,” wrote one, “for pro-science people to speak up and engage in the debate. Unfortunately, we are often stereotypically introverted nerds. Too often as scientists we expect the data to speak for itself.”
I heard from one doctor who asked:
“Could you please write an expose of the ignorance or greed of American Journalism (think Oprah) who enable those in the anti-vaccine movement? Why am I held medico-legally responsible for every word I speak in my exam rooms, but they can host these outrageous claims and not be held responsible when someone dies?”
Not all the readers who disagree with the story are flinging epithets my way. There are a lot of smart people out there who fear vaccines. One persistent theme in their emails is the idea that vaccination policies abridge our civil rights. As one reader put it,
“Me and mine are not a herd. Human beings are capable and entitled to decide for themselves what to put in our bodies.”
Another mom wrote,
“The PARENT knows their child more than anyone in the world. The PARENTS, Ms. Wallace, NOT Mr. Offit.”
“I have a Son that needs Me – not another needle.”
This idea – which we discuss in the Wired story – is powerful: that parents, not medical experts, should be the ultimate authority on their children’s health. To which I say, with all due respect, and as a parent myself: loving your child doesn’t make you an expert. It makes you a devoted parent.
The dominant emotion in even the angriest emails to me is despair.
Forget the vitriol, the slurs, the insults. The despair is what I find truly painful to read.
“Those of us with autistic children are really sick of you know-it-alls,”
one mom wrote me. Then she delivered the best description of what a loving parent wishes for their child that I have received so far.
“I want my daughter to feel like a ‘typical’ child,” she wrote. “I want her to experience ONE day of no GI pain or headaches. I want my daughter to be able to gain weight and be able to have enough energy to play on the playground with her friends.
So, in between therapies, doctors’ appointments, crying, diarrhea, no friends, trouble with school, countless vitamins to keep her tiny body going and being near bankrupt, you think I want to be in this fight?”
No, I don’t think she wants to be in that fight. Who would? Autism can be truly devastating to families. There is no debate about that. Which is why – as so many parents have said — every available research dollar should be aimed at finding the causes of the disorder.
Tomorrow, I’ll talk about some of the emails I’ve received from readers who are autistic themselves. Until then…
The first and the last letters were extremely powerful and heart breaking. It is often easy to forget the pain and confusion the parents go through when dealing with anti vaccination conspiracy theorists, and this lapse of remembering often hurts the parents and their families more than anybody else. It is due to observing this forgetfulness and apparent trolling that I have taken a step back in the discussions against anti-vaxxers.
Part 1: Initial response to feedback.
Part 3: Feedback from people with ASD.
Part 4: Comments from the article.
Part 5: Comments and feedback.