Dear researchers: please stop

I used to argue that all research was good research, that information is simply good to have no matter what it is. But at this point, I have to revisit that position and question it.

If your research concludes with….

Listen, I won’t argue that you’re more than qualified, you get paid very well and I respect what it is you do and what you’re trying to do… I understand you have the best of intentions, but here’s the thing:

If your research involves the phrase “may increase the risk of Autism” or anything similar… I ask that you please just don’t even tell anyone. Keep it to yourself.

In fact, if you know, going in, that your findings won’t result in 100% of all cases… don’t even bother doing the research. You know full well that a study on how close parents are to a highway when they have a child will not result in 100% of all close proximity cases having Autism so just don’t even bother doing it.

What the results mean to us

statisticsIn the beginning, these studies were very intriguing and really got people thinking. People wanted answers, we were starting to get answers. But what are the answers, really?

“May increase the risk” simply means that instead of 0.1% to 99.9%… now it’s 0.2% to 99.9%.

As far as we know, there’s always a risk of your child having Autism. So it’s not 0%. And we don’t know what causes it so we can’t do anything in particular to ensure it happens (not that anyone would want to).

So ultimately, all you’re really telling us is that doing something to increase the risk actually has very little bearing on whether or not our child with have Autism at all. Because for every study that says the risks go up, I can show you dozens… hundreds of parents that contradict that study and yet their child still has Autism. Or even better, parents that fit the study to a T and yet their child does not have Autism.

Will we ever move on beyond the Refrigerator Mom theory?

Granted, no one thinks Autism is caused by an uncaring mother anymore but it would seem that we certainly haven’t moved on from blaming the mother.

Recent articles include taking antidepressants, not taking prenatal vitamins, environment they live in (twin study) and older studies along the same lines include jaundice, c-section and other birth stresses, living near a freeway… and the list goes on and on and on…. and on.

If you read those articles and others, another catch phrase they use often is “new insight into autism” and yet.. a month later, a new study is released with that same catch phrase and the old one is all but forgotten.

What all of these catch phrases and conclusions really tell us is “it’s the parents fault, they did something that caused it, let’s find out what it MIGHT HAVE BEEN”.

What we’d like to hear

First of all, no one is opposed to finding out that some environmental factor or other possibility is the reason for our children having Autism. We just don’t want to know what it MIGHT BE. We just don’t want to hear about an increased risk anymore unless you are absolutely certain.

Tell us what caused an increase in 100% of the children. Heck, we’d even be ok with 75% or more… because then we’d know what to avoid for sure.

But “an increased risk” really only tells us that you blame us, will keep finding ways to blame us even though you’re not entirely sure why or how.

It’s now out of hand

These studies were intriguing at first, but now they’re just out of hand. It seems we get a new study per month that says they found something that increases the risk of Autism.

But new parents don’t read the ones before right now. They only read these stories as they become pertinent to their world… which is right now, when they’re about to become parents for the first time.

If they had the back story, if they had read the dozens of studies leading up to the one that will be released next month, perhaps they’d know just how out of hand it has all become. But they won’t read those previous stories… they’ll read the next one and believe it. And they’ll be scared.

They’ll take their prenatal vitamins, they’ll sell their house and move away from the freeway, they’ll avoid vaccines, they’ll risk their baby’s life avoiding a c-section and they’ll do it all out of complete and total fear from what they read in a recent study and for what?

The sad thing is, they could do all that and still end up with a child that has Autism. And then what? Do they wonder what they did wrong? Do they blame themselves since that’s what the studies have taught them to do? Or do they accept that despite all the risks they avoided… it was just meant to be.

Your studies mean very little to me any more. I find them to be a waste of money, a burden on the system, a way of blaming parents further, a media circus and a panic storm for new parents.

Crunch your numbers if you have to, talk to other people that did the same thing, compare those numbers, find others that did the same… and so on. Keep doing it until you have some actual answers for us. Until then, stop running to the media every time you have a chance to get your name in the paper.

 

Other similar stories:
Autism shouldn’t be about playing the blame game
“Wombs of Doom” or “How I Stopped Worrying and Learned to Love Poisoning My Children with SSRIs”
“May increase the risk of autism” studies versus real scientific research

About Stuart Duncan

My name is Stuart Duncan, creator of http://www.stuartduncan.name. My oldest son (Cameron) has Autism while my younger son (Tyler) does not. I am a work from home web developer with a background in radio. I do my very best to stay educated and do what ever is necessary to ensure my children have the tools they need to thrive. I share my stories and experiences in an effort to further grow and strengthen the online Autism community and to promote Autism Understanding and Acceptance.

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11 Responses to Dear researchers: please stop

  1. Katrina Moody July 7, 2011 at 9:34 am #

    Stuart – this is so true. I’m a research nut, but I am so sick of this blaming measure that arbitrarily goes into these studies. For what? A negligible increase?

    What’s sad, is that those negligible risks are turned into the headline, and are tweeted and shared. And that’s what new parents are seeing when they first make that decision – all the hype. Not the facts.

    Another great read! Thanks!

  2. C... July 7, 2011 at 11:05 am #

    I also hate all the speculation. I believe that somehow genetically we have the predisposition and what brings it out, God only knows. There is no sure answer and blaming parents is not the answer. I took prenatal pills, did not have a c-section but did have an epidural, did not live right next to a freeway but close (does that count), my ex was remodeling some of bathrooms at the time – could it be old house dust I inhaled ??? Who knows.

  3. Rob Gorski July 7, 2011 at 12:13 pm #

    Great article Stu….

    On a side note, what’s up with the “Like” button. Is it just me or is it broken. I’m having the same issue as well. I was trying to “Like” your post but it won’t let me.

  4. Stuart Duncan July 7, 2011 at 12:17 pm #

    Not sure Rob, I’m just hoping that Facebook is on it and will fix it.

  5. Liz Mellor July 7, 2011 at 8:24 pm #

    so well written – thank you!! Just this week research from California suggested that the risk for autism increases by 50% if the mum is older (I was 39), on antipressants during pregnancy and the child is premature, has a low birth weight and was a result of a multiple birth. I had ALL of these risk factors. I have 4 year old identical (confirmed by DNA testing) twin boys Ben & Sam. Sam received a dx of classical autism just before his 2nd birthday and is non-verbal. Ben is neurotypical. I think there is a strong genetic component – both grandfathers were engineers, his aunt (my sister studied to be actuary) and the twins’ dad is an accountant. All professions that people with ASD tendencies gravitate towards). Sam has always been significantly smaller than Ben (over 3 kgs lighter from before 2 years of age). I think whatever caused Sam’s autism happened in the womb.

  6. The Domestic Goddess July 8, 2011 at 2:31 pm #

    Excellent, Stuart!

  7. samantha July 8, 2011 at 2:56 pm #

    Love your blog, been following for sometime now. This is a great article, thank you for sharing.

  8. stark. raving. mad. mommy. July 8, 2011 at 7:11 pm #

    I totally agree. I’m getting kinda sick of these “may increase the risk of” studies. You know what I’d like to see some hard research on? What actually *works* to help kids with autism feel less stressed by the NT world. That would help kids (and adults), right now.

  9. Bloodbath February 21, 2012 at 10:06 am #

    Bruh i feel you on this, my brother was dignosed with autism and the doctors “thought it was a severe case, but the true fact is he was shy and didnt wanna talk untill he was four. these doctors have no idea what they are doing. good job on the article

  10. Jessica (@jessicaesquire) February 12, 2013 at 4:54 pm #

    Honestly, I’m not against the research at all. What I don’t like is the reporting on it. One study means almost nothing. To make any kind of definitive connection takes years of studies. Most of what we hear reported is just enough to mean “further research should be done.” That’s about it. Which makes it virtually meaningless.

    Still we live in this hypervigilant society which thinks that if you somehow keep it to yourself you’re being negligent.

    And autism is, unfortunately, trendy. Believe me, they’re doing plenty of research on a bunch of other stuff but we never hear about it because it’s not a buzzword.

    If the media did their job more responsibly we wouldn’t have to worry about all this crap.

  11. EnjoyHi5Autism February 12, 2013 at 6:31 pm #

    Hi5!

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