Re: Sarasota Memorial Hospital Study - 94% Effective on Autism Only Diagnosis

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B.L. Pike
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Re: Sarasota Memorial Hospital Study - 94% Effective on Autism Only Diagnosis

Postby B.L. Pike » Tue Oct 11, 2016 3:18 pm

Mr. Bruback, it's possible you actually believe this publication you're promoting is a "study," because many people do have a blurred idea of what actual research involves. If you're sincerely interested in helping those of us affected by autism, the sensible thing to do would be to direct your efforts toward finding a course in Research Methods that would put you on the road toward designing an effective study.

You say, "Accept it…the study results are amazing," when in fact they're seriously flawed in so many ways that it would waste all of our time to list them here. I hope you'll be gracious enough to accept that you need some help with study development skills before you can actually offer us anything approaching "proof" that your $70 belt ameliorates symptoms of autism. Please, if you believe you have something of value to offer, back up and take the steps necessary to validate your beliefs by informing yourself of what a study involves and then undertaking it in a serious and efficacious way.

Short of that, you really do come off as a shill, right?

Winnie, once again, thank you so much for your calm and caring vigilance on behalf of all of us. It's isn't just the money we're in danger of losing, it's the battering that comes from yet another hope destroyed.
B.L.

Winnie
Posts: 4227
Joined: Sat Mar 18, 2006 2:48 pm

Re: Sarasota Memorial Hospital Study - 94% Effective on Autism Only Diagnosis

Postby Winnie » Tue Oct 11, 2016 3:24 pm

B.L. Pike wrote:Mr. Bruback, it's possible you actually believe this publication you're promoting is a "study," because many people do have a blurred idea of what actual research involves. If you're sincerely interested in helping those of us affected by autism, the sensible thing to do would be to direct your efforts toward finding a course in Research Methods that would put you on the road toward designing an effective study.

You say, "Accept it…the study results are amazing," when in fact they're seriously flawed in so many ways that it would waste all of our time to list them here. I hope you'll be gracious enough to accept that you need some help with study development skills before you can actually offer us anything approaching "proof" that your $70 belt ameliorates symptoms of autism. Please, if you believe you have something of value to offer, back up and take the steps necessary to validate your beliefs by informing yourself of what a study involves and then undertaking it in a serious and efficacious way.

Short of that, you really do come off as a shill, right?

Winnie, once again, thank you so much for your calm and caring vigilance on behalf of all of us. It's isn't just the money we're in danger of losing, it's the battering that comes from yet another hope destroyed.
B.L.


Exactly. Thank you for your wise assessment from the perspective of a veteran parent.
Winnie
"Make it a powerful memory, the happiest you can remember."

Winnie
Posts: 4227
Joined: Sat Mar 18, 2006 2:48 pm

Re: Sarasota Memorial Hospital Study - 94% Effective on Autism Only Diagnosis

Postby Winnie » Tue Oct 11, 2016 3:40 pm

mbruback wrote:What are you talking about Winni? Everyone can clearly see the information below is still in the original post. You are so focused on slandering me and my company you are missing the whole point.

Winnie wrote:I also note in your new edited version (of today) that you deleted:

"... under the supervision of Allison Lauderdale, MPH, BSN, RN, the Grant Coordinator of the Sarasota Memorial Health Care System."

You deleted your original post. The reason everyone can still clearly see the information is because I quoted your original post in full prior to commenting.

Why did you delete your original post?


mbruback wrote:You are so focused on slandering me and my company you are missing the whole point.

I think the legal term you meant to brandish is libel. If I have inadvertently posted any false information that is damaging to either you or your company, by all means, point it out. I will remove it.


mbruback wrote:Please make sure you have all the facts. It's not good to confuse our readers.

I agree. I am making every effort to gather all the facts -- I like to be accurate. You have not answered simple questions that help us establish facts.

Let's try once again to establish just these simple facts:

Who wrote this paper? Who entitled this paper "Sarasota Memorial Health Care System Autism Research Study Results on the Effectiveness of the Sensory Belt™ in Alleviating symptoms of autism, Autism Spectrum Disorder (ASD), and/or Sensory Processing Disorder (SPD)?"

In your earlier post here you stated:

mbruback wrote:Authored by SMH's Clinical Research Center
http://sensorybelt.com/sensory-belt-autism-research.pdf (Page 2)

Are you standing by your ^statement? Who at the SMH Clinical Research Center was the author of this paper?
Winnie
"Make it a powerful memory, the happiest you can remember."

mbruback
Posts: 9
Joined: Tue Oct 04, 2016 3:34 pm

Re: Sarasota Memorial Hospital Study - 94% Effective on Autism Only Diagnosis

Postby mbruback » Tue Oct 11, 2016 4:36 pm

Sarasota Memorial Healthcare Foundation is a separate entity from Sarasota Memorial Healthcare System.

Facts about this study...

1) On the Sarasota Memorial Hospital Foundation Grants page funding for this study is noted as "Miracle Belt - Research". The term study and research are not the same. The original post/report mentioned "research" in the title which has been removed to be more accurate.
2) A PARENTAL/CAREGIVER SURVEY was created and used for documentation during this study. The PARENTAL/CAREGIVER SURVEY was not created by the SMH Clinical Research Center but with the assistance of Face Autism. Sarasota Memorial Clinical Research Center requested the PARENTAL/CAREGIVER SURVEY for this study.
3) SMH Clinical Research Center assisted in data collection on the survey provided to parents. Documented results were verified by the SMH Clinical Research Center the day of collection.
4) The final report for this study was approved by the SMH Clinical Research Center upon completion. As mentioned above, the original report mentioned "research" in the title which has been removed.

Note: These minor word adjustments to the final report do not alter the reports findings in any way. The final analysis of the documentation sheets provided by parents proved the Sensory Belt was 82.6% effective in alleviating symptoms caused by autism and of those with an autism only diagnosis 94% of participants noticed benefits.

**This will be my last post on this blog.**

Winnie
Posts: 4227
Joined: Sat Mar 18, 2006 2:48 pm

Re: Sarasota Memorial Hospital Study - 94% Effective on Autism Only Diagnosis

Postby Winnie » Tue Oct 11, 2016 8:55 pm

mbruback wrote:**This will be my last post on this blog.**


That seems to be a way to avoid answering simple questions of fact that have been asked repeatedly.

I still have plenty of facts to address, opinions to post, and questions to ask, including some about the *peculiarities* in your post above. You made some changes today that went unmentioned in your post.

I will do my best to be accurate, but due to your avoidance, some assumptions may be necessary where your refusal to answer questions is concerned.

In the event I misunderstand the facts or sequence of events, please do correct my understanding with facts.
Winnie
"Make it a powerful memory, the happiest you can remember."

Winnie
Posts: 4227
Joined: Sat Mar 18, 2006 2:48 pm

Re: Sarasota Memorial Hospital Study - 94% Effective on Autism Only Diagnosis

Postby Winnie » Wed Oct 12, 2016 2:15 am

First,

Why does this matter?

When a child is diagnosed with autism, the parents are desperate to find ways to help. We are pressured to conquer learning curves on many fronts – immediately – as consensus dictates that time is of the essence. Parents are vulnerable to any claim that holds hope to help their child.

We are barraged by marketing claims and buying opportunities. In the market of weighted products alone, there are weighted blankets, lap pads, vests, pets, teddy bears, shoulder wraps, and clothing – and this doesn’t even include the array of compression products available that serve a similar function.

ALL of these products have associated testimonials by parents and therapists. Weighted products have been available for as long as I remember, and my son is now an adult. Your Miracle Belts have been around for 10 years. No offense intended, but a Miracle Belt is no more novel or special than any of the other weighted products available.

While each of these products may help some children in some ways in some situations, I’m sure that if weighted product miracles were raining down all around, we would know by now.

There are a few published research studies on weighted vests and blankets, and though some children may like the product, unfortunately, neither has been shown to ameliorate the behaviors evaluated in the studies.

Since most parents do not have unlimited resources, when they make a purchase in one area, they may sacrifice in another. What I probably found most disturbing in this fact-finding was your intimidation of the mother on youtube, who was demonstrating how to make a DIY weighted belt after her son broke the buckle on his Miracle Belt. She obviously thought enough of your product to purchase, and then attempt to replace it. She wasn’t selling anything, and without knowing her situation – perhaps she didn’t have $70 to replace the belt – you threatened to “escalate” action against her for using your product name. Even if you had any legal standing, if you were more concerned about helping and blessing all the little disabled children than making a profit, as your PR would have us believe, you would not be intimidating the mother of a child with autism who made a DIY video in her kitchen.

Remember, you are profiting from our children’s disability. The parents are on paying and sacrificing side of your marketing equation.

So it is essential that parents become savvy about evaluating marketing claims. Especially miraculous marketing claims. And it is important that parents also develop some ability to evaluate “research” associated with marketing and treatment claims.

Veteran parents may have slogged through hundreds and hundreds of research articles before their child is even through the elementary years. So when Matt Bruback enters an autism support forum, marketing his product via a “research” study, claiming it “proves” his product is 94% effective with our children, he shouldn’t be surprised when parents question his claims AND his marketing.

Hopefully as this thread progresses it will serve to encourage parents to evaluate marketing claims and look beyond the face of the advertisement, because there are certainly higher stakes in the world of autism treatment than a $70 belt.
Winnie
"Make it a powerful memory, the happiest you can remember."

AspieGenes
Posts: 114
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Re: Sarasota Memorial Hospital Study - 94% Effective on Autism Only Diagnosis

Postby AspieGenes » Wed Oct 12, 2016 11:22 am

Winnie wrote:First,

Why does this matter?

When a child is diagnosed with autism, the parents are desperate to find ways to help. We are pressured to conquer learning curves on many fronts – immediately – as consensus dictates that time is of the essence. Parents are vulnerable to any claim that holds hope to help their child.


Winnie, you are the best. If I had the time and energy right now I would join in helping you mentally dismembering this (argument).

Winnie
Posts: 4227
Joined: Sat Mar 18, 2006 2:48 pm

Re: Sarasota Memorial Hospital Study - 94% Effective on Autism Only Diagnosis

Postby Winnie » Wed Oct 12, 2016 4:07 pm

mbruback wrote: Sarasota Memorial Healthcare Foundation is a separate entity from Sarasota Memorial Healthcare System.

Yes, I pointed that out in the beginning of my first response on this thread. And many times during the discussion, as you continued to conflate the SMH Foundation with the Sarasota Memorial Hospital and the Sarasota Memorial Health Care System.

mbruback wrote:Facts about this study...

Other facts you conveniently omitted:

Yesterday “Sarasota Memorial Health Care System” was removed from the title and footers of this paper, among other edits, and replaced with SMHF, in locations where you posted the paper. The very prominent SMHCS logo at the head of this paper in at least one location was also removed.

mbruback wrote:Note: These minor word adjustments to the final report do not alter the reports findings in any way. The final analysis of the documentation sheets provided by parents proved the Sensory Belt was 82.6% effective in alleviating symptoms caused by autism and of those with an autism only diagnosis 94% of participants noticed benefits.

The final “analysis” did not “prove.” This is where you reveal your lack of knowledge and marketing purposes. No credible entity would approve a paper claiming in the findings that positive survey remarks from 19 parents (some parents had multiple children in study) “prove” the effectiveness of anything. You piggyback this statement onto this already poor paper for the purposes of selling your product.

From all indications, your statement that the Sarasota Memorial Hospital Clinical Research Center authored this paper is not true.

I believe and must assume, based on the progress of this thread and your refusal to answer this simple question, that your original post was the rough draft of the paper. And I believe and must assume that you wrote it, since the author would be the person in possession of the rough draft.

The “cleaned up” final version appearing on your sales site and other internet locations was changed just yesterday. Since the paper only appears in venues where you have control, I have to assume that you made the changes. And I’m not sure who would be capable of making changes if not the author.

mbruback wrote:One fact which is for sure is how SMH has now moved forward to help 450 children due to the study results.

Oops, I think you mean the SMH Foundation, correct? You know, the separate entity. So this means your statement in your original post “The hospital has now moved forward to do a larger study since the results were so positive,” is not true either, correct?

mbruback wrote:Thank you for everyone's unwavering support in our mission to help 1,000,000 children with autism and sensory needs.

lol, and coincidentally, @ $70 per belt, this would help you to $70 million in sales.

mbruback wrote:We couldn't have done this without you!

Now that probably is true. And I’ll be posting more about that.

Honestly, I am disheartened and surprised that the SMH Foundation would award such a large grant on the basis of that paper. They awarded the initial grant to the Gap School, which is a worthy non-profit. Perhaps they didn’t realize that with your involvement as “Campaign & Event Coordinator/Fundraiser" for the Gap School, you also had a business interest in the award of the grant and the outcome of the study.
Winnie
"Make it a powerful memory, the happiest you can remember."

Winnie
Posts: 4227
Joined: Sat Mar 18, 2006 2:48 pm

Re: Sarasota Memorial Hospital Study - 94% Effective on Autism Only Diagnosis

Postby Winnie » Tue Oct 18, 2016 9:02 pm

The “autism research study” (that wasn’t an “autism research study”) has been removed from the links Matt Bruback posted on this forum
(http://www.sensorybelt.com/sensory-belt-autism-research.pdf).

Unfortunately he has slipped in the "study" claims elsewhere on the internet for purposes of marketing.

But back to examining miraculous marketing claims -- a look at a Miracle Belt youtube channel promotional video, entitled “Miracle Belt - How to calm your child fast?.”

https://www.youtube.com/watch?v=gGPOMmpHPIg

The description accompanying the video:
Young boy jumps and jumps and jumps but when his Miracle Belt is put on he calms down almost immediately! To learn more visit http:/www.miraclebelt.com

Synopsis of video – camera records young child jumping on bed and then trampoline. Mother enters frame and tells child to “stop,” “no jumping,” (child asks “what?”) and mother reiterates “No jumping.” Child asks (something), mother reiterates “no more” – all while fitting child with a Miracle Belt. Then mother gives child two toys, says (something), child sits down on bed. Child requests (something) repeatedly, and appears hesitant to leave his bed (perhaps instructed by someone out of frame?).

A Miracle Belt miracle? Not likely.

What a behaviorist (BCBA), or a professional, or even a person with experience teaching children with autism would probably recognize – immediately -- is that the child’s behavior is 1) interrupted, and 2) redirected by the mother (albeit poorly). Redirection is a common evidence-based technique used by most people who work with children to replace a (usually less desired) behavior with an alternate (more desired behavior).

(Also known as Response Interruption/Redirection (RIR): http://autismpdc.fpg.unc.edu/sites/autismpdc.fpg.unc.edu/files/RIR_factsheet.pdf)

In the case of the video, the function of the little guy’s jumping behavior is not established, nor is the context, so he may have been (not inappropriately) satisfying some sensory need (probably the reason the trampoline is in his room), or just being a kid, instead of engaging in some undesirable behavior. There does not appear to be a reason to interrupt his jumping to have him sit on the bed instead, especially since the mother did not interact with him further or reinforce his sitting behavior. Poorly done in terms of mishandling a learning opportunity, play, and reinforcing language, but giving her the benefit of the doubt, I’ll assume the Miracle Belt miracle promotion was staged for the camera.

Follows is a great blog, maintained by a BCBA, which has an explanation of redirection and parent-friendly tips on redirection (and tons of other topics – including sensory activities):

The Art of Redirection
Winnie
"Make it a powerful memory, the happiest you can remember."


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