The Right to Choose, So Choose Carefully
On the one hand, you have to give the “anti-vaccine/pro-vaccine-safety” folks some credit for, it seems, disseminating their belief that autism can be linked to vaccines or something in vaccines. As noted in numerous news sources last week, it seems that many parents are opting out of vaccinating their children. The result has been hardly surprising: Measles has returned, as an August 24th New York Times editorial states. According to a CDC report, 131 cases of measles have been reported from January-July of this year. Noting that health officials had declared measles eliminated in the US in 2000, the New York Times continues:
Nearly all of the outbreaks this year were triggered by a mere 17 travelers or foreign visitors who contracted the virus abroad. The alarming wrinkle this year is that, once the virus is imported, it seems to be spreading to more people than before.
Outbreaks have occurred among home-schooled children who escaped the compulsory school vaccinations, and among children whose parents oppose vaccination, for philosophical and religious reasons or fear that the combined measles, mumps and rubella vaccine is dangerous. Many fear that the vaccines cause autism, a theory that has been thoroughly debunked by multiple studies and by authoritative medical organizations.
I’m a parent and, in particular, the parent of a special needs child. School is on the horizon and Charlie’s IEP is ready to go, and I’m the kind of parent who (like many of us, like most of us) puts a great deal of in the “i” word of IEP. Charlie’s education and services must be tailored to his individual needs and learning style. I recall the disbelief rising in me a couple of years ao when a special ed director said he had the perfect aide for Charlie, though Charlie had never met this aide. She was “perfect” because she had been the home therapist for two other autistic children in our district, and our suggestions that Charlie’s home therapists help to train her were not well-received.
At this point, Jim and I exercised our parental right to choose the education we thought best for our child, took Charlie out of his classroom, and briefly homeschooled him. We visited and said no to a few public school placements, as we had clear-eyed and very specific view of what kind of school would be best for Charlie.
I had a particularly strong sense of justice in me throughout this experience, and a determination to “do the right thing” by Charlie. I had to: We encountered so much resistance and disbelief, and “no, we can’t do that.” And this same feeling is apparent in the words of parents stating why they have chosen to vaccine a child, as in these said by Oregon mother Jennifer Margulis in the MSSBC article, about why she has chosen not to vaccinate her three children:
“I think doctors tend to be taken back by how much I know,” she said, adding later: “I’m a public health official’s nightmare, not because I’m not responsible, but because I’m too responsible.”
….
She rejects the idea that her decision endangers others.“People say, ‘You’re putting my kid at risk, but that doesn’t make any sense at all,’” she said. “If the vaccine works, I’m just putting my child at risk.”
Certaily I’ve gone into an IEP or other school meeting feeling that I knew a lot more than anyone had bargained for, that I was “too responsible” in my ceaseless efforts to get Charlie the right education. We thought only of Charlie’s needs and not of what other children might needs. And I rather suspect this sort of thinking is typical of a parent in an IEP meeting, and it more than parallels what some say when explaining why they’ve chosen not to vaccinate. It’s all about choice and rights—one’s rights as a parent and one’s child’s rights.
But our arguments for certain educational programs and services for Charlie were developed out of individualized evaluations of him by consultants who knew him well. Our belief about what Charlie needs has always started with Charlie himself. Whereas, parents base their choice to vaccinate or not on a hypothesis, that vaccines or something in vaccines can be linked to autism; “adverse effects” are cited, without acknowledging that measles is highly contagious infectious disease whose complications include diarrhea, ear infections, pneumonia, encephalitis, seizures, and death.
It’s been puzzling to see references—by Margulis and others who are “anti-vaccine/pro-vaccine safety”—referring to measles in a rather offhand fashion. An Age of Autism post on media coverage of the measles increase in the UK says that “the tone of the articles makes it clear to the British people that measles is life-threatening and the possibility of a massive outbreak is very real”; it’s not only “the British people” who see measles in this light, but people, and certainly health and medical professionals, in general. And if the word keeps getting out that there’s some (scientifically disputed) link between measles and autism, and vaccination rates continue to fall, and autism rates stay the same or rise, and measles really really returns—-will those who’ve invested so much energy to promote a vaccine-autism link be willing to be responsible for the consequences of their efforts?
Tags: , asd, asperger, autism, autism blog, disabilities blog, disability, green, Health, immunization, measles, mercury, mmr, motherhood, Myth, natural, Parenting, pdd-nos, Science, shots
18 opinions for The Right to Choose, So Choose Carefully
Jen
Aug 25, 2008 at 5:47 am
Of course they won’t. I’m not sure that I’ve seen Wakefield apologizing lately.
Regan
Aug 25, 2008 at 6:27 am
vaccination rates continue to fall, and autism rates stay the same or rise, and measles really really returns—-will those who’ve invested so much energy to promote a vaccine-autism link be willing to be responsible for the consequences of their efforts?
Somehow the phrase, “when pigs fly”, comes to mind, although I’m willing to be pleasantly surprised should someone be willing to offer up a mea culpa.
Another Voice
Aug 25, 2008 at 9:34 am
I think doctors tend to be taken back by how little I know, not even one course in immunology. Public health officials have no idea of who I am. I try to understand our public programs and work within them. I do understand vaccination programs well enough to accept that not vaccinating creates a risk not only for my children but for others. I am certainly not crazy enough to say bring on the diseases we are trying to prevent.
The two questions that nag at me are; what if one of my little ones has a genetic predisposition toward autism (or some far worse condition); will a vaccine reaction exacerbate that predisposition? And, when does society’s right to protection overshadow my right to choice in this matter?
jypsy
Aug 25, 2008 at 9:41 am
“Certaily I’ve gone into an IEP or other school meeting feeling that I knew a lot more than anyone had bargained for, that I was “too responsible” in my ceaseless efforts to get Charlie the right education. We thought only of Charlie’s needs and not of what other children might needs. And I rather suspect this sort of thinking is typical of a parent in an IEP meeting, and it more than parallels what some say when explaining why they’ve chosen not to vaccinate.”
As the parent of 4 children I have to say that I went into IEP meetings “feeling that I knew a lot more than anyone had bargained for, that I was “too responsible” in my ceaseless efforts to get [Alex] the right education” but I was very aware of “what other children might need” because he was fully integrated (with a 1:1 aide) and, although his siblings weren’t in his class, I could see the situation from the perspective of a regular kid’s parent and try to make the situation the best one for everyone involved.
I know my thinking on many issues is not typical and this may be another or maybe it’s typical of people with more than 1 child (and one with and one without “special needs”)
The vaccination bit…. well that seems more in the realm of “belief” or “faith” and my thinking doesn’t involve much of that at all.
Kristina Chew, PhD
Aug 25, 2008 at 11:00 am
Maybe not typical, but a good model to learn from.
Amber
Aug 25, 2008 at 11:24 am
Thank you for devoting so much time to your blog! I don’t care to address the vaccine issue, but wanted to comment on your “clear-eyed and very specific view of what kind of school would be best for Charlie.” Our son will be three in a few months and we are approaching our first IEP meeting. I feel anything but clear-eyed! I hope that as we stumble our way through this process that I will develop a clear-eyed view of what is best for our son. Thank you for providing a window into your life!
bev
Aug 25, 2008 at 11:37 am
Another Voice asks, “And, when does society’s right to protection overshadow my right to choice in this matter?”
Now. Always.
Even if there were any evidence that vaccines could cause autism (and there is not), autism is neither fatal nor contagious. When would it ever be ethical to endanger your child and countless other people because of an irrational fear?
H6
Aug 25, 2008 at 12:11 pm
This must be getting serious if the New York Times, the 800-pound gorilla, is taking an interest.
It will be fascinating to see how far the government is willing to go on this issue. Autism now looks like it will soon be perceived as the number one health problem in the world because the perception that it is linked to vaccines (rightly or wrongly) promises to undermine decades of public health policies.
Will the public health folks try to criminalize speech about autism and vaccines that it deems threatening to the public health? In the interest of protecting the health of the majority will they formally declare any speech that undermines the credibility of the CDC or other public health officials on the subject of vaccines to be a threat against the public health?
It can’t happen here, can it?
Kristina Chew, PhD
Aug 25, 2008 at 12:42 pm
@H6, the NY Times has been reporting on the vaccine issue fairly regularly, with the reporting often done by Gardiner Harris.
@Amber, We were very much stumbling in the dark when Charlie was just diagnose; everything was new and I just didn’t know what to make of all these therapies and treatments and evaluations and on and on. Hope the IEP meeting goes well—-are you going it on your own or bringing an advocate? We did the first meetings just with the two of us, my husband and me, but some advice and support would have meant a lot!
H6
Aug 25, 2008 at 1:06 pm
I meant the editorial department, not the news department. There supposedly is a difference. Is this just another of their many editorials warning about the danger of the vaccine critics and whistleblowers?
There probably are those who consider Gardiner Harris’s reports to actually be editorials.
Emily
Aug 25, 2008 at 3:32 pm
I don’t understand why all they talk about IS measles. What about diptheria? Whooping cough? Polio? Tetanus? Bring ‘em on?
Kristina Chew, PhD
Aug 25, 2008 at 5:57 pm
Harris has seemed sometimes….sympathetic? ….. to the anti-vaccine/pro-vaccine-safety-ers.
Sure, bring on all those diseases and then we’ll have too much on our hands and have to just forget about autism.
Regan
Aug 25, 2008 at 6:05 pm
we’ll have too much on our hands and have to just forget about autism.
Or develop a sense of humility.
Kristina Chew, PhD
Aug 25, 2008 at 7:09 pm
Based on the latest readings ’round the web, that will take some doing.
Another Voice
Aug 25, 2008 at 8:22 pm
@bev – You are entitled to your opinion and thank you for sharing it. Please don’t refer to my concern as an irrational fear.
I certainly support vaccinating; I don’t want any of those diseases to reappear. I must admit that each series of shots presents us with another risk assessment and more worry.
Melody
Aug 27, 2008 at 5:27 am
I don’t think the use of the phrase “irrational fear” was meant to be personal. After all, if there’s not evidence backing up an idea, and evidence going against it, then it’s not a logical, rational idea.
Another Voice
Aug 28, 2008 at 8:29 am
@Melody - I reread my original post in this thread (third from the top). I still don’t feel the concern I expressed is irrational.
The Great Now What
Nov 2, 2008 at 6:43 am
[…] convinced. Some say that parents should have the right to choose to vaccinate or not; meanwhile, measles has been on the rise this year with some 131 cases so far reported, This focus on vaccines has come to preoccupy […]
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