Re: MCcarthey 20/20

[Guest guest]

I worry most about these kinds of treatments that are not proven because it seems like they should be working their bums off to find ways to prove what works and what doesn't work. I haven't seen any big charge to do that. Have you found any information on "why" there are no scientific studies proving or disproving these theories? I did not know it did not take very much to become a Dan doc. I never really had thought about that but wow - one conference is it. That really surprised me to read that.

I am probably more like you - I like seeing the proof. I like data. I like solid evidence of advancement. It is also really tough to judge behavior overall and even more so (I feel) if it's your own kid. You live in the situation and that can really affect your thoughts. Same with teachers and our kids. When my oldest ds was 4, he was in a sped pre-k program. He was taking a med for hyperactivity at the time - "cylert." (Sounds like a med from mission control, huh) Anyway, one day there was a note from the teacher and it said, "Royce did great today and was very talkative! Did you forget to give him his cylert?" The big thing was, she did not agree he should be taking any medication (her personal bias against meds) so anytime he had a good day was a day I must have "forgot" to give him his meds. I think sometimes we do wishful thinking that something will work according to what we want the outcomes to be.

Another recent experience with a friend who is giving her child (severe autism) a med and wondered if it was helping curb his stimming. (He's a great stimmer, master at it!) The school (special ABA school) took data and said it is NOT helping his stimming as he is averaging hundreds of stims per hour still. But I think the point I got from finding all that out is that we really tended to think the med was helping a little bit and in reality, it wasn't doing squat. I mean, we knew it wasn't doing great things but this showed it was not doing much of anything in that area. That was a "wow" moment.

Thanks for looking this stuff up!

RoxannaAutism Happens

RE: ( ) Re: MCcarthey 20/20

I may be wrong and I am sure someone will correct me if I am – LOL. But, since the whole DAN subject has come up and been so controversial I have done some research. From what I can find there are no scientific studies (research) to support DAN therapies. I don’t mean studies that DAN doctors or their Autism Research Institute has done, I mean real scientific studies. A scientific study is based on gathering observable, empirical, and measurable evidence subject to specific principles of reasoning – in other words, the scientific method is used which consists of data collection through observation and experimentation and then formulating and testing of hypotheses (suggested explanations). Scientific researchers propose hypotheses (suggested explanations) and design experimental studies to test these hypotheses. These steps must be repeatable in order to dependably predict any future results. This process must be objective to reduce a biased interpretation. Another expectation of scientific research is to document, archive, and share all data and methodology so other scientists can scrutinize it and verify the results by attempting to reproduce it. Scientific work will be accepted by the scientific community when it has been confirmed and when it is reproduced by others (independent of the initial researcher(s)) in the scientific community. This is called peer review. The researcher writes a paper detailing his research and results and presents it to editors of scientific journals. These editors then submits this paper to 1-3 fellow anonymous scientists familiar with the field for evaluation. Once they complete their evaluation they may or may not recommend publication, publication w/ suggested modifications, or publication in another journal. This keeps the scientific literature free of unscientific or crackpot work, helps cut down on obvious errors, and improves the quality of the scientific literature. Work announced in the popular press (newspapers, magazines, etc.) before going thru this process is generally frowned upon and looked at as questionable. I think that DAN doctors and therapies are often not reimbursed by insurance as they are considered “alternative” therapies.

Sorry, this is so long. If anyone wants to read more about scientific method you can google it. (I am laughing out loud as I am sure I have told you more than you ever wanted to know about it!!) I used Wickipedia to help me explain it in layman’s terms. I am a nurse; part of my educational requirement was two classes that dealt specifically with research – a statistics class and a research class. I know I am weird but I liked both of these classes and find research interesting!

[Guest guest]

Yeah! Glad to see he is doing so well and to have a teacher who noticed too!

RoxannaAutism Happens

Re: ( ) Re: MCcarthey 20/20

absolutely,

I'm <<finding>> the money for everything we need for now. tutoring, doctors, co-pay, therapy, social skills and gas. LOL, sometimes I'm counting change too. LOL. for us, this is all working, you know Robin, us parents aren't out there doing our nails every week, and going out to clubs and expensive restaurants, but instead, we're all doing what we need to do for our kids. right now, this is it for us. and because of this, my son went from " with his reading state test, " not meeting the learning standards, to a year later, with all the after school reading programs and tutoring, ' grade level, above average '. and everyplace I need to take him is from 20 minutes to 1 1/2 hrs away, each.. I can see he will be in the skills group for a very long time. now we are working on life skills. I just got someone to help me with that. yea !!! we are getting there very slow, but its in the right direction... I do want to compliment his teacher...

today, he got his mark back on his writing report. is was a low passing grade. my son told me at the end of the day. his teacher called him back into the room. said to him that he did a great job. ( she knew where he came from - with reading, writing & spelling). she said, I can tell this is all your work without any help from your mom, and you typed it up by yourself. she also explained to him I can tell with some others, it looked like their parents wrote and typed the whole report for them. but she made my son feel ' good ' about himself because it was his work...and what an improvement from a kid who couldn't read, write, or spell - AT ALL...so, even though he got a very low passing mark, it's so much better then what he used to do, which was have only one incomplete sentence that you couldn't read because of the spelling. so with all that said, if there were something else that works better, and has better results, I'll get the money for it, even if I have to work 3 jobs to do it...*smile*.

Rose and/or Robin Lemke <jrisjs > wrote:

Just off the top of my head, I couldn't afford it. But, if it sounded like good results were possible and if I tried it once and thought it may help more in the long run,,,,,I'd find the money,

If that meant cancelling Cable or whatever.

I'd find the money.

I think for something that we either thought WOULD work or DID work,,,,,,we'd all find the money.

Right?

Robin Ake <lessensbcglobal (DOT) net> wrote:

I CAN NOT afford it!!dgoneau <dgoneau > wrote:

ok this has started so much hostility,I was wondering...Exactly how many of us could even afford it if we had the chance to take our children to DAN? I know I couldn't .I firmly believe it was created for and by people who have lots of money. Us Peons who aren't rich are left to suffer with all of the many problems our children are developing. Or am I alone in this?

Never miss a thing. Make your homepage.

Never miss a thing. Make your homepage.

[Guest guest]

Autism is a big money business too. Look at all the books about it.. Let alone treatments or proposed 'cures'

Scary really isn't it.

-- Re: ( ) Re: MCcarthey 20/20

I worry most about these kinds of treatments that are not proven because it seems like they should be working their bums off to find ways to prove what works and what doesn't work. I haven't seen any big charge to do that. Have you found any information on "why" there are no scientific studies proving or disproving these theories? I did not know it did not take very much to become a Dan doc. I never really had thought about that but wow - one conference is it. That really surprised me to read that.

I am probably more like you - I like seeing the proof. I like data. I like solid evidence of advancement. It is also really tough to judge behavior overall and even more so (I feel) if it's your own kid. You live in the situation and that can really affect your thoughts. Same with teachers and our kids. When my oldest ds was 4, he was in a sped pre-k program. He was taking a med for hyperactivity at the time - "cylert." (Sounds like a med from mission control, huh) Anyway, one day there was a note from the teacher and it said, "Royce did great today and was very talkative! Did you forget to give him his cylert?" The big thing was, she did not agree he should be taking any medication (her personal bias against meds) so anytime he had a good day was a day I must have "forgot" to give him his meds. I think sometimes we do wishful thinking that something will work according to what we want the outcomes to be.

Another recent experience with a friend who is giving her child (severe autism) a med and wondered if it was helping curb his stimming. (He's a great stimmer, master at it!) The school (special ABA school) took data and said it is NOT helping his stimming as he is averaging hundreds of stims per hour still. But I think the point I got from finding all that out is that we really tended to think the med was helping a little bit and in reality, it wasn't doing squat. I mean, we knew it wasn't doing great things but this showed it was not doing much of anything in that area. That was a "wow" moment.

Thanks for looking this stuff up!

RoxannaAutism Happens

RE: ( ) Re: MCcarthey 20/20

I may be wrong and I am sure someone will correct me if I am – LOL. But, since the whole DAN subject has come up and been so controversial I have done some research. From what I can find there are no scientific studies (research) to support DAN therapies. I don’t mean studies that DAN doctors or their Autism Research Institute has done, I mean real scientific studies. A scientific study is based on gathering observable, empirical, and measurable evidence subject to specific principles of reasoning – in other words, the scientific method is used which consists of data collection through observation and experimentation and then formulating and testing of hypotheses (suggested explanations). Scientific researchers propose hypotheses (suggested explanations) and design experimental studies to test these hypotheses. These steps must be repeatable in order to dependably predict any future results. This process must be objective to reduce a biased interpretation. Another expectation of scientific research is to document, archive, and share all data and methodology so other scientists can scrutinize it and verify the results by attempting to reproduce it. Scientific work will be accepted by the scientific community when it has been confirmed and when it is reproduced by others (independent of the initial researcher(s)) in the scientific community. This is called peer review. The researcher writes a paper detailing his research and results and presents it to editors of scientific journals. These editors then submits this paper to 1-3 fellow anonymous scientists familiar with the field for evaluation. Once they complete their evaluation they may or may not recommend publication, publication w/ suggested modifications, or publication in another journal. This keeps the scientific literature free of unscientific or crackpot work, helps cut down on obvious errors, and improves the quality of the scientific literature. Work announced in the popular press (newspapers, magazines, etc.) before going thru this process is generally frowned upon and looked at as questionable. I think that DAN doctors and therapies are often not reimbursed by insurance as they are considered “alternative” therapies.

Sorry, this is so long. If anyone wants to read more about scientific method you can google it. (I am laughing out loud as I am sure I have told you more than you ever wanted to know about it!!) I used Wickipedia to help me explain it in layman’s terms. I am a nurse; part of my educational requirement was two classes that dealt specifically with research – a statistics class and a research class. I know I am weird but I liked both of these classes and find research interesting!

[Guest guest]

I did it all on my own, trial and error. The diet part. we only did

the food part. We didn't see a DAN! until we needed verification for

the school, that was really only once. I think the whole punishment

of autism in a nutshell is that it isn't recognized by enough people

as a real problem and there isn't just the trifecta of services like

in other dx's. We can't afford to see a DAN! and most of the time we

go uninsured because here, autism isn't covered in a private policy,

only group. We make other sacrifices to afford the expensive items

our daughter needs for the diet. A lot of people go into super debt

trying to help their kiddos. I can't figure out why social skills

aren't part of the whole therapy package right up front. They focus

mainly on OT and speech and PT if needed, but social skills seems to

be the hardest to get and they need that early on too. Yea, our

daughter now has speech, but she hasn't a clue what to say and I have

to shadow her because i never know what she is going to say or ask and

our son, i have to keep an ear out that he isn't running people off

talking about his special interest.

I was talking to someone who had a downs baby. No one denied he had

downs. She got the trifecta of services right off the bat, (OT/SP/PT)

and the baby is only 15 months old.

Regina

ok this has started so much

hostility,I was wondering...Exactly how

> many of us could even afford it if we had the chance to take our

> children to DAN? I know I couldn't .I firmly believe it was created

> for and by people who have lots of money. Us Peons who aren't rich are

> left to suffer with all of the many problems our children are

> developing. Or am I alone in this?

>

[Guest guest]

When i looked into it, and what i hear from those who see a DAN! they

usually have to pay out of network and there is a coding thing that is

done but the patient has to pay still, and still, 90% of it is trial

and error, most DAN! doctors, still don't tell you step by step, they

deal mainly with testing and supplements and other treatments. The

diet sets the stage for all else. We are stuck at the diet part and

haven't proceeded after all these years.

Regina

>

> - I just asked this question in a long post earlier but

insurance

> generally does not pay for DAN treatment does it?

>

>

[Guest guest]

, I'm sorry it took me so long, I'm way behind in emails. Generally DAN! doctors are not covered by insurance. It sounded to me like a great idea if I had the money, although from what Regina said, maybe it's not what it's all hyped up to be?genasu63301 <genasu@...> wrote: When i looked into it, and what i hear from those who see a DAN! theyusually have to pay out of network and there is a coding thing that isdone but the patient has to pay still, and still, 90% of it is trialand error, most DAN!

doctors, still don't tell you step by step, theydeal mainly with testing and supplements and other treatments. Thediet sets the stage for all else. We are stuck at the diet part andhaven't proceeded after all these years.Regina>> - I just asked this question in a long post earlier butinsurance> generally does not pay for DAN treatment does it?> >