UNIted for Autism 100 miles in a day...on Unicycles!

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UniGeezer
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Joined: Thu Jun 04, 2015 2:05 pm

UNIted for Autism 100 miles in a day...on Unicycles!

Postby UniGeezer » Thu Jun 04, 2015 2:10 pm

This is our "UNIted for Autism" 100 mile ride video, from 6/2/15. At the ages of 14 and 59, we (Augie Tourdot and myself) became the youngest and oldest to ride 100 miles in one day on unicycles) This was a very special uni-century in so many ways. The ride was dedicated to Augie's brother Charlie, who has autism, and we raised money (surpassing our goal!) for autism research.

Btw, is there a way to embed this video?

http://www.youtube.com/watch?v=R1Q-ASHETvg

Winnie
Posts: 4226
Joined: Sat Mar 18, 2006 2:48 pm

Re: UNIted for Autism 100 miles in a day...on Unicycles!

Postby Winnie » Sat Jun 06, 2015 3:44 pm

UniGeezer wrote:This is our "UNIted for Autism" 100 mile ride video, from 6/2/15. At the ages of 14 and 59, we (Augie Tourdot and myself) became the youngest and oldest to ride 100 miles in one day on unicycles) This was a very special uni-century in so many ways. The ride was dedicated to Augie's brother Charlie, who has autism, and we raised money (surpassing our goal!) for autism research.

Btw, is there a way to embed this video?

http://www.youtube.com/watch?v=R1Q-ASHETvg
Hi UniGeezer -- welcome to the forum. On this site there isn't a way I know of to embed the video.

That is an awesome video and I really applaud your effort! Hard to imagine how difficult riding a unicycle for 100 miles must be!

I just wish your effort had gone toward a more legitimate and less fringe org. I can't think of any research -- especially legitimate research -- that TACA has funded. TACA has long been known to be about as far away from legitimate research and credible claims as one can get. The same goes for some folks on their board of directors (and founder, Lisa Ackerman), and, it seems, their physician advisory board.

Just one example (there are many) -- I see Anju Usman is on their Physician Advisory Board. What you won't see in her bio on the TACA site is that she has been in a lot of hot water over the years for the treatments she subjected children with autism to (while ripping off their parents). See December article in Chicago Tribune:

Naperville doctor disciplined in controversial autism case
http://www.chicagotribune.com/lifestyles/health/ct-autism-anjum-usman-discipline-met-20141229-story.html

She profited hugely from the desperation of parents -- all while begging for donations on the internet to fund her legal defense:

http://standbydrusman.com/

Just disgusting really.

I hope you choose a different organization in the future -- and check it out before investing your effort!
Winnie
"Make it a powerful memory, the happiest you can remember."

UniGeezer
Posts: 3
Joined: Thu Jun 04, 2015 2:05 pm

Re: UNIted for Autism 100 miles in a day...on Unicycles!

Postby UniGeezer » Sat Jun 06, 2015 4:00 pm

Winnie wrote:
UniGeezer wrote:This is our "UNIted for Autism" 100 mile ride video, from 6/2/15. At the ages of 14 and 59, we (Augie Tourdot and myself) became the youngest and oldest to ride 100 miles in one day on unicycles) This was a very special uni-century in so many ways. The ride was dedicated to Augie's brother Charlie, who has autism, and we raised money (surpassing our goal!) for autism research.

Btw, is there a way to embed this video?

http://www.youtube.com/watch?v=R1Q-ASHETvg
Hi UniGeezer -- welcome to the forum. On this site there isn't a way I know of to embed the video.

That is an awesome video and I really applaud your effort! Hard to imagine how difficult riding a unicycle for 100 miles must be!

I just wish your effort had gone toward a more legitimate and less fringe org. I can't think of any research -- especially legitimate research -- that TACA has funded. TACA has long been known to be about as far away from legitimate research and credible claims as one can get. The same goes for some folks on their board of directors (and founder, Lisa Ackerman), and, it seems, their physician advisory board.

Just one example (there are many) -- I see Anju Usman is on their Physician Advisory Board. What you won't see in her bio on the TACA site is that she has been in a lot of hot water over the years for the treatments she subjected children with autism to (while ripping off their parents). See December article in Chicago Tribune:

Naperville doctor disciplined in controversial autism case
http://www.chicagotribune.com/lifestyles/health/ct-autism-anjum-usman-discipline-met-20141229-story.html

She profited hugely from the desperation of parents -- all while begging for donations on the internet to fund her legal defense:

http://standbydrusman.com/

Just disgusting really.

I hope you choose a different organization in the future -- and check it out before investing your effort!
Hi Winnie and thanks for that info. I initially had set it up with "Autism Speaks" but after reading so many negatives about that org. I decided against it. Only reason I went with TACA is because Augie's parents go to TACA events that are close to their homebase and they say their friends like the org. I will forward your comments about it to her. Thanks

Santosg
Posts: 192
Joined: Sun Aug 17, 2014 5:33 am

Re: UNIted for Autism 100 miles in a day...on Unicycles!

Postby Santosg » Sat Jun 06, 2015 5:19 pm

Dr. Usman did not injure a patient. She got caught up in a nasty divorce battle. By the current standards of treatment, I'd say most of the things done to autistic children are medically unproven. Even something as simple and common as PECS. Look up the meta-analysis done on PECS. They concluded it was ineffective. But we see lots of speech therapist and ABA therapist using PECS. Maybe they should all be sanctioned!

I can post many reports that show the harm caused by statin drugs, the worsening of patients who undergo open heart surgery, and on and on. Hundreds of thousands of people die yearly from prescription medication. Where are the disciplinary hearings?

When a very extensive study is done that show that EDTA chelation has a positive effect on coronary heart disease, those conclusions just have to be dismissed as unbelievable.

http://well.blogs.nytimes.com/2013/04/1 ... sist/?_r=0


There is a bit of irony in all this, of course. Today the leading story for the Chicago Tribute was on the devastating effects of lead poisoning.

http://www.chicagotribune.com/news/watc ... tml#page=1

Dr. Usman performed a number of tests to assess the metal load of the child she was sanctioned for treating. I guess when even a challenge test to measure the heavy metal load of a child is dismissed as 'bunk', we've got to conclude that there is only one right answer to any of these questions.

Winnie
Posts: 4226
Joined: Sat Mar 18, 2006 2:48 pm

Re: UNIted for Autism 100 miles in a day...on Unicycles!

Postby Winnie » Sun Jun 07, 2015 12:32 am

Santos, I’m kinda disappointed to see that you are slipping into the realm of just repeating what you read on kooky internet conspiracy sites instead of actually examining the facts for yourself. :/

Santosg wrote:Dr. Usman did not injure a patient. She got caught up in a nasty divorce battle.
The usual “got caught in a ugly divorce” defense of Usman doesn’t have anything to do with the disciplinary sanctions by the Illinois medical board. The father (custodial parent as I recall) filed a complaint (2011 Chicago Tribune article here) which brought the medical records of one of the children to light – divorce had nothing to do with either the treatments she subjected this particular child to for no apparent medically valid reason or the actions of the disciplinary board.

You can read the treatment information for one child in the court documents yourself (here). The treatments this child was subjected to over time are pretty gruesome (and apparently not very effective). Rossignol (also on TACA’s physician advisory board) was also involved – treating the child for several years over the phone without ever even seeing him.

From the court document – note that Usman and Rossignol are (ironically) fans of pharma products and prescription drugs. A snippet:
24. A.J. continued the regimes instituted by Defendants USMAN and ROSSIGNOL from late December 2006 through mid-October 2007. During that period of time, Defendant USMAN diagnosed heavy metal toxicity, continued diet restrictions, ordered supplements for A.J., and prescribed Spironolactone (a diuretic that was medically unnecessary and is known to cause tumors), Nyastin, Curacumin, DMPS suppositories for rectal chelation, and EDTA. At no point during this period of time did Defendant USMAN diagnose A.J.’s condition as autism.

25. During the same period of time from late December 2006 through mid-October 2007, Defendant ROSSIGNOL continued his telephone consultations with A.J.’s mother and diagnosed, without ever seeing or examining A.J., and although he diagnosed a myriad of conditions, including Minamata disease and encephalopathy (2/7/2007), toxic effects of mercury and its compounds and inflammation of the brain (6/1/2007), toxic effects of mercury and its compounds, encephalopathy, autoimmune disease, and nutritional deficiency (6/19/2007), toxic effects of mercury and its compounds, encephalopathy, and autoimmune disease (10/2/2007), ROSSIGNOL did not diagnose autism.

26. During the same period of time from late December 2006 through mid-October 2007, and based on his diagnoses, Defendant ROSSIGNOL prescribed Methyl B-12 injectable medication (2/9/2007), Ferrous sulfate elixir (2/9/2007), DMPS suppositories for rectal chelation, Spironolactone (6/1/2007), NAC transdermal (6/1/2007), DMPS suppositories (5/5 and 6/4/2007), Vitamin C injectable vials (10/2/2007), NAC injectable vials (10/2/2007), EDTA injectable vials (10/2/2007), Nystatin (10/2/2007), oral Spironolactone (10/2/2007), Glutathione injectable vials (10/2/2007), and DMPS injectable vials (10/2/2007), some of which medications were manufactured, distributed, and/or sold to A.J.’s parent by Defendant CREATION’S OWN.

27. During Defendant ROSSIGNOL’s telephone consultation with A.J.’s mother on October 2, 2007, Defendant recommended and advised that A.J.’s medical condition required IV chelation therapy and forwarded a protocol to Defendant USMAN for implementation of chelation therapy.

28. On or about October 24, 2007, Defendant USMAN commenced IV chelation therapy upon A.J. (based on her diagnosis of heavy metal toxicity) and following a protocol developed by Defendant ROSSIGNOL (based on his diagnosis of heavy metal toxicity). At Defendant USMAN’s direction and under her supervision, chelation therapy was performed on A.J. using EDTA as the chelating agent combined with Vitamin C, GSH (a drug approved only for the treatment HIV) and DMPS (a non-FDA approved drug), on November 7, 2007, November 28, 2007, December 5, 2007, December 19, 2007, January 2, 2008, January 9, 2008, January 23, 2008, January 30, 2008, February 13, 2008, February 28, 2008, March 11, 2008, March 27, 2008, April 3, 2008, April 10, 2008, April 17, 2008, April 24, 2008, April 30, 2008, May 8, 2008, May 14, 2008, May 21, 2008, May 29, 2008, June 5, 2008, June 11, 2008, September 17, 2008, October 1, 2008, October 8, 2008, October 16, 2008, October 22, 2008, October 30, 2008, November 6, 2008, November 12, 2008, November 19, 2008, December 11, 2008, December 17, 2008, January 5, 2009, January 19, 2009, February 5, 2009, February 16, 2009, March 4, 2009, March 19, 2009, and April 2, 2009.

29. From October 2007 through April 2009, when Defendant USMAN was administering IV chelation therapy to A.J. on a twice-a-month basis, A.J. was additionally being medicated by Defendants USMAN and ROSSIGNOL with supplements manufactured, distributed, and sold to A.J.’s parent by Defendant CREATION’S OWN,as well as Spironolactone, Nystatin, Methyl B-12, Singulair, Fer-in-Sol, N-Acetylcysteine, and DMPS suppositories.



Santosg wrote:I'd say most of the things done to autistic children are medically unproven. Even something as simple and common as PECS. Look up the meta-analysis done on PECS. They concluded it was ineffective. But we see lots of speech therapist and ABA therapist using PECS. Maybe they should all be sanctioned!
Aside from the obvious fact that PECS is a communication system using pictures – not a medical treatment – I don’t know of any meta-analysis where “they” (who is “they?”) “concluded it was ineffective.” Link me up, Santos, and support your statements.


Santosg wrote:I can post many reports that show the harm caused by statin drugs, the worsening of patients who undergo open heart surgery, and on and on. Hundreds of thousands of people die yearly from prescription medication. Where are the disciplinary hearings?
Those reports would be irrelevant for use in justifying Usman’s practices, but as to the “where” one can find info on disciplinary actions taken against physicians, most state medical boards have online search features that allow one to find this information on any licensed physician.


Santosg wrote:When a very extensive study is done that show that EDTA chelation has a positive effect on coronary heart disease, those conclusions just have to be dismissed as unbelievable.
http://well.blogs.nytimes.com/2013/04/1 ... sist/?_r=0
This also appears to be irrelevant to the topic at hand – but I cannot read the blog post due to a paywall.


Santosg wrote:There is a bit of irony in all this, of course. Today the leading story for the Chicago Tribute was on the devastating effects of lead poisoning.
http://www.chicagotribune.com/news/watc ... tml#page=1
The Chicago Tribune has published quite a few articles on lead poisoning among Chicago children. Unfortunately the lead problem in Chicago is not new news. However, these are legitimate cases of lead poisoning, and are not diagnosed with quacky tests using invalid reference-range comparisons. And (thankfully) these children won’t be seeing Usman – they are poor and their parents wouldn’t be able to afford her exorbitant fees and products.


Santosg wrote:Dr. Usman performed a number of tests to assess the metal load of the child she was sanctioned for treating.
Which tests were valid for diagnosing metal poisoning, Santos, and which ones were valid for prescribing all those rounds of IV and rectal chelation? Link me up with the facts that support your statement. My facts are from the medical info in the court document and articles from legitimate news outlets.


Santosg wrote:I guess when even a challenge test to measure the heavy metal load of a child is dismissed as 'bunk', we've got to conclude that there is only one right answer to any of these questions.
A provoked urinary metals challenge test actually is “bunk” as the basis of diagnosing metal poisoning and prescribing treatment with chelation. Please see the position statement from the American College of Medical Toxicology (specialists with actual expertise in metal poisoning) for information/explanation of this test:
American College of Medical Toxicology Position Statement on Post-Chelator Challenge Urinary Metal Testing
http://www.acmt.net/cgi/page.cgi?aid=2999&_id=462&zine=show

Santos, I know you are of the belief that chelation (specifically Andrew Cutler’s chelation claims) will be the answer for your son, and that your defense of these treatments and individuals is therefore likely based more in emotion and belief than in fact. Although I am not a believer in Cutler’s fantastic unsupported claims, the real irony of your post is that even Cutler would vigorously agree that what Usman did was harmful.
Last edited by Winnie on Sun Jun 07, 2015 2:38 am, edited 2 times in total.
Winnie
"Make it a powerful memory, the happiest you can remember."

Winnie
Posts: 4226
Joined: Sat Mar 18, 2006 2:48 pm

Re: UNIted for Autism 100 miles in a day...on Unicycles!

Postby Winnie » Sun Jun 07, 2015 1:45 am

UniGeezer wrote:Hi Winnie and thanks for that info. I initially had set it up with "Autism Speaks" but after reading so many negatives about that org. I decided against it. Only reason I went with TACA is because Augie's parents go to TACA events that are close to their homebase and they say their friends like the org. I will forward your comments about it to her. Thanks


UniGeezer, your intentions were pure and effort great -- just consider it a good deed for the sake of awareness. The ride benefitted Augie too -- he can feel good and be recognized for his commitment to his brother.

However one feels about the politics and fundraising of Autism Speaks, at least they do fund legitimate research. Looks like you may have raised $50 over there before switching orgs though. :)

As you are close to the family, it might be best not to forward this info to them. Since they are already involved with TACA, you may risk making them angry and provoking a defensive response. There is no known/identified cure for autism, although legitimate research suggests that up to 20% may eventually lose the autism diagnosis. In the absence of a cure, the claims of groups like TACA and the practitioners they promote are very appealing to desperate and hopeful parents. Pointing out the problems with their beliefs will almost certainly be unappreciated, provoke an emotional response, and possibly result in an earful about evil-doers you never knew existed. :P

Thanks for your interest in autism -- it's appreciated!
Winnie
"Make it a powerful memory, the happiest you can remember."

Santosg
Posts: 192
Joined: Sun Aug 17, 2014 5:33 am

Re: UNIted for Autism 100 miles in a day...on Unicycles!

Postby Santosg » Sun Jun 07, 2015 5:44 am

Let me be clear, I don't think that heavy metals are issues for all children with autism. I think that there are many children who are born autistic. Autistic children have distinct medical needs. Many have specific medical needs that can be helped. Some have few to no medical issues aside from autism. There is always a problem with people just desperately grasping for the cause of autism and placing all their hopes on their child fully recovering simply by doing x,y, or z.

I think that you're a great fact checker and keep people on the board honest. Having looked into many recovery stories, I see just how few there are. Many of the parents that say their child is recover absolutely are not.

I think you'd be more than willing to admit that you'd take issue with anyone who said that autism is simply mercury poisoning. That is reasonable. Autism is a complex problem and its etiology is diverse. Having said that, I think it is just as reasonable to take issue with someone who said that there were no issues with heavy metals in children who have autism. When children do have issues with metals they must be effectively treated.

With the exception of blood tests—that only show recent exposure—I take it that you don't think there is validity to any test for heavy metals. If that is the case, there is essentially no way to even test for previous exposure or metal loads that are sequestered within tissues. I assume you don't find challenge tests valid. If so, its basically saying that there is no amount of proof that can demonstrate that child has issues with metals—end of story. If you don't believe that any of these tests play a diagnostic tool, you inevitably will jump to a conclusion that no test is proof that someone has issues with heavy metals. Again, that's a leap too far.

Parents need to run tests, assess the needs of their child, and make choices.

The entire issue with Usman did resolve around the divorce of the patients parents. The child has been a patient for a number of years, all during the parents marriage. The father sued the doctors to have legal leverage in his custody battle. A real (person), in you ask me. That prompted the medical board to look into the treatments being administered. Again, you could make the same charges toward almost any pediatric psychiatrist. To criticize a physician simply because they perform chelation, despite the fact that tests had been run showing elevated heavy metals (*but these tests are all invalid, of course), and who was being monitored during chelation, is founded in the general opposition you have to chelation. The opposition is not based on the specific medical issues of the child. If children have heavy metals they have to be removed. I'm not chelating my son because I want to, because I enjoy it, or because I think it will miraculously recover him. I'm going it because tests have shown it is necessary. Even if it had no effect on his outcome—and obviously, I certainly hope it does—I would still chelate him.

I reserve judgment and don't condemn interventions when I don't know the medical history of the child involved. To say that no child will benefit from chelation would be irresponsible. Do all autistic children have gluten and casein issues? No. The diet has been validated to help many of them, but just to apply it blindly does not make sense. To say it is not helpful does not make sense either.

I understand that you don't want parents to be used or victimized. I agree and understand that completely. But I think we have to draw a distinction between practitioners and protocols. Are you criticizing a doctor or a method? Usually, it seems like both. Do you dismiss all biomedical interventions? Lastly, we can criticize DAN doctors all we want, but have the average parent try and get a B-12 shot prescribed to their child. Most doctors won't do it. Many children with autism has greatly benefited from the biomedical approach. I've seen it with my own eyes and with my own son.

So, again, I take issue with universal claims being made for or against an intervention like chelation. I hope you understand that. Beyond that point, we'd only really be talking past each other.

UniGeezer
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Re: UNIted for Autism 100 miles in a day...on Unicycles!

Postby UniGeezer » Sun Jun 07, 2015 11:48 am

Winnie wrote:
UniGeezer, your intentions were pure and effort great -- just consider it a good deed for the sake of awareness. The ride benefitted Augie too -- he can feel good and be recognized for his commitment to his brother.

However one feels about the politics and fundraising of Autism Speaks, at least they do fund legitimate research. Looks like you may have raised $50 over there before switching orgs though. :)


I would be very interested to know which Autism organizations you would recommend for future fundraising events.

Winnie
Posts: 4226
Joined: Sat Mar 18, 2006 2:48 pm

Re: UNIted for Autism 100 miles in a day...on Unicycles!

Postby Winnie » Mon Jun 08, 2015 12:25 am

UniGeezer wrote:I would be very interested to know which Autism organizations you would recommend for future fundraising events.

That's a good question -- especially now that I've dumped on the one you donated to ;)

I guess that depends on whether you are interested in raising money for a larger cause, like research, or for something that may have a more immediate benefit/impact for children -- even kids in your community or region.

One thing that I have heard parents say in regard to larger orgs is that they work very hard to raise funds that are funneled elsewhere, all while needs exist in their own communities.

The HollyRod Foundation is in LA -- they are probably best known for providing iPads to children with autism who otherwise could not afford this technology and specialized apps. These can be game-changers as communication devices for children with autism. The HollyRod Foundation also has a program that benefits siblings and another called "My Brother Charlie." Here is the link -- check it out and see what you think: http://www.hollyrod.org/

You might also consider asking a reputable local autism org for ideas that would impact your community -- even ask the families you know about needs in their communities. Here is a link to Autism Society of California affiliates -- perhaps you could contact the affiliate closest to your location and ask about funding needs:
http://www.autismsocietyca.org/local-affiliates.html

Otherwise, there may be some smaller nonprofits that fund specific needs in your community or state, but be sure to check them out (disclosures, form 990, etc). Unfortunately the disability genre (including autism) is an appealing target for individuals to set up a non-profit that mainly benefits the travels and expenses of the Executive Director (themselves).

If you come across some names of charities/non-profits that interest you, I'll be happy to help look up information on them. At least that's something I can do -- I would only be able to ride a unicycle for about 5 feet (straight down to destination asphalt).

Again, your effort and interest in autism is much appreciated.
Winnie
"Make it a powerful memory, the happiest you can remember."

Winnie
Posts: 4226
Joined: Sat Mar 18, 2006 2:48 pm

Re: UNIted for Autism 100 miles in a day...on Unicycles!

Postby Winnie » Mon Jun 08, 2015 1:32 am

Santosg wrote:To criticize a physician simply because they perform chelation, despite the fact that tests had been run showing elevated heavy metals (*but these tests are all invalid, of course), and who was being monitored during chelation, is founded in the general opposition you have to chelation. The opposition is not based on the specific medical issues of the child. If children have heavy metals they have to be removed.


Santos, FWIW, I have always appreciated your loving dedication as a father and enjoyed your insight on so many topics.

I will be happy to address your post and questions, but I feel that this discussion probably needs to be on its own thread. I'm not sure what to entitle the thread -- but when I get a chance I'll start a new one (probably in the Autism Articles sub-forum, which is for discussion of autism theories) and respond.

I have some questions as well -- many that have never been answered. I feel that if the questions actually have answers, you are knowledgeable and probably know what these are.

Meanwhile, in terms of my perspective, the following forum thread is practically a clinic on how vulnerable parents are to charlatans and frauds in the treatment realm, as well as how emotional and irrational they can become when the "leader" is questioned. It is a hideously long though interesting thread, and the self-appointed treatment guru, "DrMom" (Rebecca Cochran aka Rebecca Claire) was later exposed and proven to be a fraud and profiteer:

Thread title: Autism Recovery for Real!
http://www.autismweb.com/forum/viewtopic.php?f=4&t=24663
Winnie
"Make it a powerful memory, the happiest you can remember."

Santosg
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Re: UNIted for Autism 100 miles in a day...on Unicycles!

Postby Santosg » Wed Jun 10, 2015 3:57 am

Winnie,

I definitely value your contribution to the forum, your experience, and your wide body of knowledge. In the end, we just have to make the best decision that we can, provided the resources and information available. For me, I think that the biggest challenge is to really try to translate research in related fields of medicine, therapy, and neuroscience and try to make them applicable to the kinds of interventions and activities we can provide our children. No one can do it alone and this forum helps us do it together. I'm glad we're on in the battle together.


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