Obsession with data and scientific proof

[Anonymous]

It seems that whenever therapies are suggested or mentioned, certain posters or perhaps one poster always responds that there is no scientific proof or data that a therapy or item works.

My feelings about this. An absence of controlled studies about a certain therapy does not mean that controlled studies, if performed, would prove that therapy does not work. I also wonder about people who always need data before attempting anything with their child. I understand the need to avoid quackery and the wish not to throw money away. However if I see something that many other parents are recommending I'm going to consider trying it, regardless of whether controlled blind studies have been performed.

How much healthy skepticism do you bring?

[Anonymous]

Everything has a cost in terms of time, money and/or effort. For example, if someone tells me that feeding my kid organic milk will produce healthier bones, then the cost is paying more for milk. If it turns out that it really isn't true that organic milk has any effect, then the price I've paid is a few dollars more every week. I was still going to buy the milk, and there's no negative effect of the organic milk.

Everyone has their threshold. For some parents, they have little time, effort and/or money to spare. For some, spending a couple of extra dollars on organic milk really would "break the bank." They could stretch and do it, but they need some assurances that it really is worth their money. On the other habd, you may have a few extra dollars and can "afford" to spend a few extra dollars on something that may or may not have any real effect.

Neither you nor the parent who chooses not to "spend" without more proof is the better parent. You're just making choices based on the resources you have available and weighing them against the "price" you have to pay. I would caution you OP from using terms like "healthy" because it implies a judgement that one parent's basis for making decisions is better than others'. Everybody does the best they can with information AND money, effort and/or energy they have.

[Anonymous]

PP 5:37 here:

And I would STRONGLY caution against titling a post with the word "obsession." You're implying that a parent who asks for data has something wrong with their decision-making process. That's judgmental and mot okay. That's like saying the person who won't spend a couple of extra dollars on organic milk is "cheap." You have no idea what resources (time, money, effort, energy) anyone has at their disposal and aren't in any position to judge.

[Anonymous]

I absolutely want to know that there is some science behind an intervention before I both plunk down the money and drag my kid through it. there are a lot of quacks out there trying to make money off of parents of kids with ASDs as well as a lot of people who think they are the knights in shining armor who are going to save our kids. The few times I've tip toed down that path I've regretted it.

I am not obsessed. I don't care if you want to throw time and money at these things, thats your business. But please don't negatively characterize me.

[Anonymous]

it is also true that, if something hasn't been tested, it actually might be detrimental instead of helpful. The body is complex and it is not easy to tell what is harmful or not from intuition. Take the classical example of plastic versus wooden cutting boards. For years people just thought it obvious that plastic would be safer and that wooden would harbor germs. When the actual testing was done, the opposite was found. Our intuitions are often okay, but sometimes they are quite dangerous.

[Anonymous]

Ultimately, I ask our developmental pediatrician about therapies, services, individual therapists, etc. That's what I pay him for. Anon Internet posters recommendations not much although I like hearing about the experiences of other parents who had btdt.

[Anonymous]

Anonymous wrote:It seems that whenever therapies are suggested or mentioned, certain posters or perhaps one poster always responds that there is no scientific proof or data that a therapy or item works.

My feelings about this. An absence of controlled studies about a certain therapy does not mean that controlled studies, if performed, would prove that therapy does not work. I also wonder about people who always need data before attempting anything with their child. I understand the need to avoid quackery and the wish not to throw money away. However if I see something that many other parents are recommending I'm going to consider trying it, regardless of whether controlled blind studies have been performed.

How much healthy skepticism do you bring?

Really? I'm not using my child as a guinea pig.

With so many developmental disorders, it's the old-fashioned, hard-work therapy in speech, OT, physical therapy that makes the difference. But people like their miracles and the idea of a quick fix. You could easily waste all your savings and your kid's whole childhood launching from unproven therapy to unproven therapy. Meanwhile, the years go by, the child matures and improves, and people try to say "it's because of X."

So for me, I want the double-blind studies that prove things work if I'm going to invest a lot of capital and force my child to spend his days driving from appointment to appointment in therapists' waiting rooms.

I was reading the online blog of one mom who has done endless treatments with her child, who has similar issues as mine and is the same age. I've done only the minimum therapies. Our children are progressing equally.

[Anonymous]

I hear ya. I find it annoying on message boards like DCUM whenever someone asks for links to studies for whatever therapy. This is a message board for parents of SN who mostly are relating their personal/anecdotal experiences. The constant asking for "proof" can get old and they should ask a developmental pediatrician and/or experts that are following their child about it or do their own research rather than look for affirmation or not on an anon message board.

[Anonymous]

Another issue is that there is a whole industry of charlatans that are basically stealing from desperate families. They promise cures and effective treatments and will take you for everything you're worth. I stick with what is scientifically supported...

[Anonymous]

I think there is a happy medium between being gullible and buying expensive quackery and get-well-quick schemes for your sick kids, and refusing to consider ANY anecdotal evidence about things like weighted blankets or trying therapeutic interventions that might not even cost anything.

I don't like posts that insist on meaningless statistics to back up the claims of well-meaning moms.

[Anonymous]

The response in the weighted blanket thread was that there is proof that it helps. That's a statement of fact, which can be factored into a decision making process. No one was being obsessive. No one even suggested that it wasn't worth a try. He/she just said that there haven't been any studies.

That's information that I want to know. When I'm considering therapies for my kids, I want to know what has been shown to work. I'm also interested in hearing anecdotal evidence. I also want know about cost and time commitments, and the general difficulty of pursuing a therapy at home.


I don't like posts that insist on meaningless statistics to back up the claims of well-meaning moms.



You haven't spent enough time around some parenting boards. "Well meaning moms" will fall into some pretty heinous parenting practices on the basis of anecdotal evidence. There's a thread floating around right now that suggest crystal therapy for teething.

[Anonymous]

Anonymous wrote:...This is a message board for parents of SN who mostly are relating their personal/anecdotal experiences...

According to whom? You? First off, it depends on what a parent needs to know. We get a lot of information thrown at us and sometimes it's nice for help in weeding it out. Anecdotes are NICE to know. The science behind therapies is a NEED to know.

[Anonymous]

Anonymous wrote: The response in the weighted blanket thread was that there is proof that it helps. That's a statement of fact, which can be factored into a decision making process. No one was being obsessive. No one even suggested that it wasn't worth a try. He/she just said that there haven't been any studies.

That's information that I want to know. When I'm considering therapies for my kids, I want to know what has been shown to work. I'm also interested in hearing anecdotal evidence. I also want know about cost and time commitments, and the general difficulty of pursuing a therapy at home.


I don't like posts that insist on meaningless statistics to back up the claims of well-meaning moms.



You haven't spent enough time around some parenting boards. "Well meaning moms" will fall into some pretty heinous parenting practices on the basis of anecdotal evidence. There's a thread floating around right now that suggest crystal therapy for teething.

Apples and oranges. What I'm talking about is the annoying poster or posters who asks for links to peer-reviewed studies whenever someone has had a personal success with their own child.

[Anonymous]

Anonymous wrote:

Anonymous wrote:...This is a message board for parents of SN who mostly are relating their personal/anecdotal experiences...

According to whom? You? First off, it depends on what a parent needs to know. We get a lot of information thrown at us and sometimes it's nice for help in weeding it out. Anecdotes are NICE to know. The science behind therapies is a NEED to know.

According to whom?

[Anonymous]

Anonymous wrote:I hear ya. I find it annoying on message boards like DCUM whenever someone asks for links to studies for whatever therapy. This is a message board for parents of SN who mostly are relating their personal/anecdotal experiences. The constant asking for "proof" can get old and they should ask a developmental pediatrician and/or experts that are following their child about it or do their own research rather than look for affirmation or not on an anon message board.

I say straw man. I can't think of very many posts like that. I haven't read the weighted blankets thread so maybe I missed it, but the vast majority of what I read on these boards is anecdotal. if someone annoys you by asking for the science behind something, you can just ignore the post, no need to go on some kind of over-generalized crusade.