Yesterday I watched this video: http://www.youtube.com/watch?v=ER74aA3Rhjo and found myself nodding in agreement and wanting to hug the person responsible for it.
It has long been a bugbear of mine that otherwise intelligent and knowledgeable people often seem unable to get their point across without being dismissive or insulting towards those who have not "heard" their message.
As a parent of an autistic child, I have become embroiled in discussions about homeopathic remedies, reiki, special diets...the list of anecdotally successful remedies is endless. And I have tried most of them at one time or another, because when you haven't slept properly for several days and you can see your child is in distress you will try ANYTHING.
I will freely admit that, if any of them had appeared to work, I'd have stuck with them until they no longer did. Even whilst knowing that they were probably useless. Because desperation and sleep deprivation make being rational really difficult.
If I feel this way, as someone who will always trust the opinion of the professionals dealing with my child, imagine how alienated someone with a bias towards alternative therapies, and a belief that the MMR causes autism, feels when they are told they are "stupid" or sarcastically congratulated for giving their child and others a death sentence by not vaccinating them.
I understand the frustration inherent in trying to explain to someone that their beliefs have no basis in fact. As "the lady with the autistic child" I am often asked by nervous parents whose children are approaching the age for their MMR whether I think it caused his autism.
I tell them that in my opinion there is no connection. That, had he not been my first child, I might have picked up on the signs that, with hindsight, were there from approx. 6 months and that, although at the time I had my doubts, I chose to vaccinate because I preferred the risk of autism to the risk of my, or someone else's, child being exposed to a potentially fatal illness. I then tell them that it is a choice only they can make.
It is not my place to tell them what to do, they are the ones who will live with their decision. I can only give them the information I have, direct them to credible sources and hope. Telling someone their fears are stupid will guarantee that they do not hear your message.
So if you want to get your point across and educate people without alienating them or insulting their intelligence, follow the example set in this video. Please. Speaking as one of the people you are trying to reach, I am desperate, scared, guilt-ridden and sometimes ill-informed. I am vulnerable, not stupid.
20 comments:
Thank you for this.
Our daughter was born in 1997.
She had her first MMR injection at 12 months, and was diagnosed with ASD at the age of three, right in the middle of the MMR/Autism debacle.
We soon had to decide whether or not she should have the follow-up injection. Not even the health professionals could give much advice either way - I don't think they were in a better position to judge given the hysteria at the time.
In the end we decided our daughter should not have the second injection. It's a decision I now regret as it may have left her unprotected.
Like you, I do not believe that MMR caused or triggered our daughter's ASD. But at the time, like you, we were (and still are) vulnerable but not stupid.
Our daughter is very bravely going through her HPV injections at the moment. Perhaps when they're over we should investigate the possibility of an MMR booster.
Post hoc non ergo propter hoc.
Hi HD,
Thank you for taking the time to comment. It's a minefield we have to negotiate as parents and it's wonderful to hear from others about their experiences. I wish you and your family all the best, especially your daughter. Injections are no fun!
Hi!
You say:
...
And I have tried most of them at one time or another, because when you haven't slept properly for several days and you can see your child is in distress you will try ANYTHING.
...
This is precisely the problem; that is an irresponsible behaviour and you should not be allowed to do it (i.e., making irrational decisions that will affect your child simply because you feel "bad"), but, since you are actually allowed to, the governments should assure that the "anythings" (legally) at your disposal are, at the very least, not harmful, and preferably, they should warn you of your risk of not going to the real specialist who can diagnose and (hopefully) give a proper treatment for whatever illness your child has. You have the right to do to yourself whatever you want (once you are informed of the risks, of course), but not to your children.
Regards, Jose Brox
Dear Jose,
I would never do anything that I thought might pose a threat to my child. When attempting the homeopathic remedies and trying reiki, I never denied my child proper medical assistance and I always informed my GP and the professionals dealing with him exactly what I was trying. If at any point they had said I was endangering his health I would have stopped.
This post is a plea for understanding. I want those with the knowledge and expertise to express themselves better so that those who currently rely soley on alternative therapies might be persuaded that the medical alternatives should be tried. It wasn't meant as an attack and I would hope that your comment wasn't either.
Regards, Jackie
Hello, Jackie.
Your twitter handle is clever! :)
I just left a reply tweet, saying "Well-written & touching, but could've done without the straw-man". Twitter doesn't afford me the chance of explaining what I mean - so I thought I should leave a clarifying comment at your blog, too.
You are a brave parent and you want to care for your child in the best possible way. You are aware that parenting an autistic child is not an easy matter, fraught with its own challenges, frustrations, sleeplessness and a deep, gnawing sense of loss of hope. As a parent, you also fight these challenges day in and day out, fueled only by the love for your child.
Under these tough circumstances, the lure of alternative therapies, however unproven and ineffective, is not difficult to understand. To use a hackneyed cliché, a drowning person will grasp at straws.
But however much you grasp at straws and make a nice collection, that doesn't justify the straw-man you've constructed out of them, in your statement above: It has long been a bugbear of mine that otherwise intelligent and knowledgeable people often seem unable to get their point across without being dismissive or insulting towards those who have not "heard" their message.
It is not necessary for anyone to continue making the same mistake over and over. Even under difficult circumstances, one should reason and figure out what is truly the best for their child. You did. You have tried alt med therapies and realized that they don't work, and have gotten beyond them to get proper professional advice and acted accordingly. That made your child and others safer.
If you follow through the 'message' of these intelligent and knowledgeable people beyond the perceived 'insults' or dismissals, you'd notice one thing in common. They want the best for your child, others' children, all children. They are professionals trained to deal with sickness and health - AND, most importantly, they do it in an evidence-based, rational manner.
You spoke of your frustrations as a parent, right? Can you imagine the frustration of a pediatrician who finds a child sick or dying from a vaccine-preventable disease because the parents refused vaccination for their child motivated by irrational, sometimes religiously motivated, anti-vaccination fears? Can you now see past the so-called insults and dismissals to get at the true message?
If you should direct your ire, do it at those purveyors of pseudoscience and alt-med nonsense. They are the ones that foment and foster such fears and doubt that poor parents get taken in by. If you think scientists and professionals are insulting your intelligence, you should really visit the fetid bogpits of the websites and blogs of these anti-vaccination alt-med crackpots. Some of them are downright unethical, peddling quackery, and feeding on the misery of gullible, desperate individuals seeking succor.
Dear SUIRAUQA,
Thank you for taking the time to comment. I really appreciate it. I am sorry if this came across as anything other than a plea for better communication. I have no personal ire towards those intelligent and knowledgeable people. I am grateful that they are there, but their message is not getting through to many scared and vulnerable people because they feel alienated and dismissed as stupid. This sadly plays into the hands of the proponents of anti-vax and alt-med.
Re: Suirauga's comment - I don't think this post does contain a 'strawman'. It may well be an image this particular commentator has been lucky to avoid, but they do exist.
I am grateful that they are there, but their message is not getting through to many scared and vulnerable people because they feel alienated and dismissed as stupid.
Dear Jackie, I agree with you. I wouldn't blame the scared and vulnerable parents; they are the victims here. It is going to take a LOT of persistent effort from the science- and evidence-based medicine's side to counter the plethora of lies and misinformation that the anti-vax alt-med camp has put out there. Parents need to realize the tremendous harm the latter is visiting upon them and their children.
Alice, I am but an insignificant part of the many individuals trying to fight the good fight against the said lies and misinformation from the alt-med camp. I don't deny that the "image" that you mention exists, but I did clarify in my note what motivation guides them. The strawman argument had simply to do with the Jackie's sweeping statement about those "otherwise intelligent and knowledgeable people" - one that is not generalizable. But as I also said, I do understand the genesis of her statement.
Thanks for this post. I just wanted to add my support to the message you are putting across, and for @Alice's comment. This post doesn't create a strawman but responds fairly to comments that all too frequently appear, at least on blogs and Twitter. A call to find ways to communicate more effectively, perhaps just with a variation of tone, should not meet with comments such as that from @Anonymous or @Suirauqa's first. No matter what good intentions motivate those fighting the good fight, they must understand that in some circumstances techniques like ridicule are counterproductive.
Hello! That's my video! Thanks so much for checking it out and writing about it. :) The podcast-version is on my Token Skeptic show and I'll be putting it into the feed when I get home (from QEDCon - currently in London until tomorrow). Many thanks to Alom Shaha for telling me that you wrote about it! :)
My daughter Crox Minima is aspergic and we saw signs of it not long after her first MMR. We didn't give her a second one but went for single vaccines ... From Dr Pugh's clinic, subsequently shown to have been a fraud. Later we found that Crox Minima had no protection against these diseases and we had her given her MMR booster. Now, we aren't antivaxers or homeopaths , but felt single vaccines were safer - remember the atmosphere at the time: the NHS refused to provide them ; the Prime Minister refused to say if his child had had MMR - and even my editorial colleagues, who know a thing or two, (we are editors at Nature and know a thing or two) counselled taking kids abroad to get single vaccines.
When you are a parent you are surrounded by people screaming advice at you from all sides. When the government and NHS behaved as they did, it's no wonder people turn to exotica. Scrounge in this situation behave lime aliens with huge brains and no genitalia, or people who don't have children. Or, ironically, people with ASD
Thank you Alice and Rebekah for taking the time to comment.
I have to admit I felt a bit wounded and went away to have a think at one point because I really hadn't thought I was saying anything that would cause upset. I guess that's one of the problems with the written word. You don't hear the voice as intended.
I just hope that Jose sees that his reaction to a perceived attack is really no different to that of a desperate parent/carer/sufferer when they perceive an attack: You fight or walk away. Either way, you're not listening any more.
Hi Kylie,
Thanks for making the video. I meant it when I said I was nodding in agreement and I really would like to give you a hug for approaching the subject in the way you did.
Hello again cromercrox,
Thanks for commenting. I really appreciate you taking the time to do so. A lot of otherwise rational and intelligent people got caught out by the MMR fiasco. The fact that those a lot more informed & intelligent than I got fooled makes me feel a little better about my own misgivings at the time, but also makes me angry and sad for all those damaged by it (in whatever way).
'Scrounge in this situation behave lime aliens'
Ouch. Serves me right for commenting on an iPhone. I meant 'Skeptics in this situation behave like aliens'.
Thanks for the belly laugh, cromercrox. I'm hoping that Kylie's video and this post will make a difference.
Thank you Jackie for posting it.
Hi rpg,
Thanks for stopping by to comment. I really liked your post. Glad to see you also think Kylie's video is important.
(For anyone who's curious and in the strange position of knowing my blog and not his, you can see it here: http://bit.ly/gAFljG )
...or you could just click on his name. *facepalm* Sorry-I'm kinda new to this blogging lark.
My son posted a link to your blog. Well done. I am a mom and grandma so I feel for the agony you go through. I am interested in the subject. How did you feel about DR. OZ segment last week. I felt it was informative. Did say some diet changes had helped some children, especially gluten free. I dont know that this question can be answered easily however, your family and all that deal with autism are in my prayers.
I don't know anything about DR.OZ, but my personal feeling about changes in diet is that I am loathe to take anything out of my child's diet as it is already very restricted. We tend more towards supplementing his diet.
In either case I would want to consult my GP and the nutritionist at his school before considering any major changes to his diet.
Any changes we make always have to be introduced slowly.
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