Obsession with data and scientific proof

[Anonymous]

Anonymous wrote:

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?

According to me and this PP and many others. If you don;t care whether science supports a therapy, thats your priority. Not the same for most of us.

[Anonymous]

Anonymous wrote:

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.

ITA. If they want peer review articles go search on medline. If they care enough to want peer review articles, they can do their own research rather than asking parents who are relating their own personal experience. No one is endorsing anything other than saying what worked for their child. Take it or leave it.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

ITA. If they want peer review articles go search on medline. If they care enough to want peer review articles, they can do their own research rather than asking parents who are relating their own personal experience. No one is endorsing anything other than saying what worked for their child. Take it or leave it.

A request for additional information isn't an indictment. It's a question. If the answer is "No, there's no peer reviewed research, but it worked for us." that's a fair answer. I like having that information.

Y'all are being too defensive.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

ITA. If they want peer review articles go search on medline. If they care enough to want peer review articles, they can do their own research rather than asking parents who are relating their own personal experience. No one is endorsing anything other than saying what worked for their child. Take it or leave it.

A request for additional information isn't an indictment. It's a question. If the answer is "No, there's no peer reviewed research, but it worked for us." that's a fair answer. I like having that information.

Y'all are being too defensive.

Edit to add: here's an example from my real life. My kid with HFA is enrolled in kids' acting classes/theater classes. He loves them. They are extremely helpful for him. They have improved his social functioning tremendously. There's not a bit of peer reviewed research to back up that intervention, but it worked really well for us.

I'm not uncomfortable with relating my experience or saying there isn't any peer reviewed research to back up that experience. Both are statements of fact for us.

If you feel uncomfortable with people asking a simple question about whether something you tried has been tested in a peer-reviewed setting, you're probably not comfortable with your course of action. That's understandable. It's so hard to know what is best for these kids. There's just so much we don't know. Please understand that the question of peer-reviewed vs. non-peer reviewed isn't an attack. It's just a request for information or it's someone offering information.

[Anonymous]

Hi OP, I'm with you on this one, though I also respect opinions of others. Personally, I am not going to wait peer-reviewed publications from randomized clinical trials because I feel the urgency to act quickly during this limited developmental window of opportunity. More importantly, I don't really need clinical trial data. I have all the data I need from my DC's blood and urine testing. Organic acids test showed the extreme vitamin deficiencies and inflammation that my child has and these are definitely associated with developmental delays and they cause autism. I am working with an integrative developmental pediatrician to safely correct those deficiencies for my child. I'm not using any snake oil, but safe and reasonable plan to improve the health of my child that is based on real data that is specific to my child. While I have only recently initiated these therapies, I am already seeing tremendous positive benefits.

[Anonymous]

Great, OP, you brought out the crazies with 21:14. Stupidest thread ever.

[Anonymous]

@22:36- I feel sorry for people like you who refuse to entertain the possibility that your child's issues may have a medical root cause. I guess it's much easier to sit around watching "Dancing with the Stars" while eating bon bons, than researching how to help your child overcome their illness. That's what the doctors are for, right?? Ten or twenty years from now when the data matures from all of those clinical trials, we will know the answer beyond doubt, but it will be too late for your child.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

ITA. If they want peer review articles go search on medline. If they care enough to want peer review articles, they can do their own research rather than asking parents who are relating their own personal experience. No one is endorsing anything other than saying what worked for their child. Take it or leave it.

A request for additional information isn't an indictment. It's a question. If the answer is "No, there's no peer reviewed research, but it worked for us." that's a fair answer. I like having that information.

Y'all are being too defensive.

Edit to add: here's an example from my real life. My kid with HFA is enrolled in kids' acting classes/theater classes. He loves them. They are extremely helpful for him. They have improved his social functioning tremendously. There's not a bit of peer reviewed research to back up that intervention, but it worked really well for us.

I'm not uncomfortable with relating my experience or saying there isn't any peer reviewed research to back up that experience. Both are statements of fact for us.

If you feel uncomfortable with people asking a simple question about whether something you tried has been tested in a peer-reviewed setting, you're probably not comfortable with your course of action. That's understandable. It's so hard to know what is best for these kids. There's just so much we don't know. Please understand that the question of peer-reviewed vs. non-peer reviewed isn't an attack. It's just a request for information or it's someone offering information.

I've already used the term "a healthy medium" and we seem to be actually saying the same thing...

[Anonymous]

Anonymous wrote:@22:36- I feel sorry for people like you who refuse to entertain the possibility that your child's issues may have a medical root cause. I guess it's much easier to sit around watching "Dancing with the Stars" while eating bon bons, than researching how to help your child overcome their illness. That's what the doctors are for, right?? Ten or twenty years from now when the data matures from all of those clinical trials, we will know the answer beyond doubt, but it will be too late for your child.

I have a child with an ASD who has made ENORMOUS strides, going from being barely verbal to being fully functioning in a mainstream classroom with many friends. He still has an ASD but unless you know what you are looking for, you wouldn't see it. And I did it the fully mainstream way -- speech therapy, floortime, social skills groups. I do not sit around eating bon bons and watching TV -- I have worked my ass off for my child. But I also have not pursued interventions that have no basis in science. You are not more virtuous because you have pursued these things. You also do not have all the answers, because at this point no one does. "Beyond a doubt?" You can't say this until the studies come out, at this point you are just guessing. And I really hate this "it will be too late for your child" glee. I want all our children to do well, regardless of what methods their parents pursue. I want your child to do well, I want my child to do well. And I believe we are all doing our best for our kids.

[Anonymous]

@7:49- so first you call other people crazy and then you go on the defensive? You say you have not pursued interventions that are not based on science? An organic acids test is about as much science as anyone could ask for...actual lab testing that could help identify a severe deficiency or metabolic disorder. Wouldn't you want to know if your child had a real medical issue that caused their developmental delay or learning disability? Maybe you wouldn't have had to "work your a$$" off if you had taken a more scientific/medical approach. If you truly want your child to do well (which I am not dismissing) and my kid to do well then you can start by being more open minded and less contentious with everyone on this board who has a different approach to healing their child.

[Anonymous]

7:49 again. I didn't call you crazy, that was a different poster. I would never do that.

[Anonymous]

@11:16- my apologies for confusing you with the PP. You should also know that I don't consider myself more virtuous for taking a medical/scientific approach, and in case you're wondering, I have also worked my bottom off with all of the other therapies like SLP, PT, OT. While the latter have not lead to many improvements for my child, I continue with them. I am of the mindset that we have to throw every reasonable approach at a problem. I believe those approaches may start to benefit my child once the medical issues are under control.

[Anonymous]

All those "blood tests" don't likely show what you think they do. And your child may have been gotten better just over time.

Mine has.

[Anonymous]

what do you mean that the blood tests don't show what I think they do?? Also, I find it hard to believe that my child's rapid progress over the past week after implementing sound medical intervention, and following over a year and a half of stagnation with other therapies (SLP. OT, PT, ABA), is just a coincidence. DC's progress is certainly temporally associated with the medical interventions I started a week ago. Glad your child and others have done very well not needing any medical interventions. I wish that had been the case for my kid because I feel like I wasted a lot of precious time. In any case, we aren't talking about autism. It is widely acknowledged that it's more properly called "autisms" because there are many root causes. It stands to reason, therefore, that therapies are "not one size fits all".