Thursday, March 20, 2008

Behavioral Therapy that Addresses Root Issues- RDI

Dr. Stephen Gutstein is the creator of RDI therapy, which you can read more about here:
http://www.rdiconnect.com/, and the parents who have been trained and are using it seem very enthusiastic. Jenny McCarthy is a famous mom who has used this therapy, but I am very excited to report that a therapist at the facility where my son receives therapy is being certified in RDI.
This talk focused on a specific issue that children with autism face: dynamic vs. static thinking. IQ tests measure static thinking(what you have learned), and people with ASD may have excellent S.T. because ASD doesn't affect this type of thinking. In a typically developing child, dynamic thinking actually develops first/ With D.T., there is no single pre-learned link between problem and solution. We must use our experience to evaluate and sometimes "construct" optimal plans and strategies. We must make continuing adjustments based on new information as well as feedback from our actions. It's the way we solve real-world problems, conduct ongoing relationships, and negotiate the continually changing stream of life. D.T. is not correlated with IQ scores, and it is, according to Dr. Gutstein, the universal deficit in ASDs.
So to sum up, static thinking is what you know & how you apply knowledge in static environments, whereas dynamic (or constructive)thinking volves what you do with what you know in a continually changing world; making continual "course corrections" based on evaluating adapting, ever-changing situations, because going off course is inevitable in the real world.
Currently in the works is an RDI Dynamic Thinking Remediation curriculum. It has a developmental progression of objectives, and is reverse-engineered into 1,138 (WOW!) very small, observable steps. The goal is to carefully introduce new discoveries, and then elaborating on those discoveries to generalize into many areas. A primary goal is that the children come away feeling that some uncertainty can be interesting rather than frightening. They should also become more adept at generating multiple solutions to a problem. In addition, the focus is turning previously automatic reactions into deliberate actions. So the overarching goal of this curriculum is competence: the knowledge that you can handle anything thrown at you. You desire to undertake challenging problems, master new abilities and enter new environments. Also you learn to recover successfully from difficult moments and maintain trust & motivation for future challenges.

Friday, February 29, 2008

Advocate Without A Dog in the Hunt- Deirdre Imus

As much as I appreciate the parents and grandparents of children with autism who are advocates for safer vaccines and biomedical treatment, it takes a really special person to run to our aid even though they are not personally affected. Deirdre is one of those people- sounding the alarm, being a voice for us. In her work for children with cancer as well as autism, she is tireless in her drive to help.
In her talk at the conference, she discussed the Hackensack New Jersey School with the autism cluster, where 24/42 kids under ten born to teachers there have a neurodevelopmental disorder- that's 57%, folks! Ten of those have autism. Her foundation led the charge and funded a study to try to determine why.
She reinforced the idea that there is NO SCIENTIST who can prove the safety of any level of mercury. It has't happened, and it never will.
Our kids suffer from toxic overload, due to many factors: an accelerated vaccine schedule, malnutrition/decreased absorption/mineral levels, and an inability to excrete & detox.
She has written a book and developed a line of cleaning products called "Greening the Cleaning" which are now being used in some schools and hospitals. They have been rigorously tested, since the popular notion floating wround out there is that "if it's natural, it doesn't work as well." In addition, she said that hospitals have been surprised to find that they've actually saved money when switching to this program.
Her website is www.dienviro.com, and it is loaded with good information about becoming more eco-minded, as well as a link to the hospital she helped create which is completely environmentally friendly. You can watch a video tour on the site- and it is fascinating and inspiring! You can also follow the links to order Greening the Cleaning products for your home.

Friday, February 1, 2008

Notes from Neubrander

Dr. Neubrander's focus was helping parents decide which biomedical treatments give you the most "bang for your buck". Here are the notes I took during the presentation:

Our children suffer from:
*oxidative stress
*toxins & heavy metals
*methylation & transulfuration issues

We need to improve:
*inflammation
*nutritional support
*immune function
*detoxification

ARI's parent reports show the strongest results from the following treatments:
1. chelation/detox
2. SCD
3. GFCF
4. Melatonin
5. B12
6. Allergy Dx
7. digestive enzymes
8. fatty acids
9. yeast diet
10. Feingold diet

The physician reports on the same site give a similar picture. They list the most effective treatments as:
1. MB12 (Dr. Neubrander says he gives it for 26-42 mos. in his practice and feels many don't give it long enough)
2. HBOT
3. IV Chelation
4. Healing the Gut
5. Diet supplements


The parent ratings can be found at:http://www.autism.com/treatable/form34qr.htm

The site in general- www.autism.com provides a wealth of information and you should spend time studying all it has to offer.

Thursday, January 31, 2008

Raise Your Voice- Political Advocacy

Wendy Fournier, our diminuitive president of the National Autism Association led this talk.
www.nationalautismassociation.org
She fleshed out some of the give & take that happened with the Combating Autism Act and showed how hard she and other advocates fought to win some important concessions. She certainly does not see the Act as accomplishing all we'd like it to by any means, but it's a start. Hopefully all of you reading this took time to let the IACC know what direction you'd like to see autism research take- I did. And I think the growing drumbeat for all of us is a vaccinated vs. unvaccinated study, but obviously we'd also like to see studies whose outcomes can help our children TODAY. Those of you who know me know I have a heart for prevention and determining causation, but there is no doubt that affected families need a lot NOW.
In terms of accomplishing either of these things (prevention & treatment), Wendy outlined several roadblocks.
"...restricted access by credentialed researchers to medical databases, unwillingness by NIH and scientists to investigate environmental factors in autism, including vaccines, a belief system that autism is fixed prenatally, inadequate funding and sense of urgency"

Also discussed was the IOM's more recent 2007 meeting on autism in which environmental factors including vaccines, were discussed. I have read the transcript of this meeting, and was glad to see that comments from some of our scientists and advocates were presented. My question is: "The CDC, AAP, etc. continually cite the 2004 IOM report. When will the '07 report be made?"
Then the numerous failures of the CDC were highlighted. Wendy wrote an outstanding piece about the simiar failures of the AAP. Ya gotta love Wendy and Boyd and all of our friends who don't pull any punches and tell it like it is:
http://www.ageofautism.com/2008/01/national-autism.html
There are several pieces of pending legislation to be aware of, educate yourself about further, and contact your legislators about: H.R. 1973(Vaccine Safety & Public Confidence Act), H.R. 881(Mercury Free Vaccines Act) (go Dave Weldon!), and H.R. 2832 (vaccinated vs. unvaccinated study would be mandated!). Right now these are at a standstill. Here are steps you can personally take, as listed by Wendy:
*Call your legislator's office and ask to speak with their Health Staffer
*Tell the staffer that you want your rep to co-sponsor a specific bill
*Ask for an in-person meeting with your congressman or senator
* Bring a copy of David Kirby's Evidence of Harm
* Send correspondence by mail or fax insttead of email

So what are you waiting for? Get busy! And email me or leave a comment to tell me what happened.

Saturday, January 26, 2008

Gunfight at the O.K. Corral- The Boys from NIH

O.K. So two big guns from NIH came to speak to us. They HAD to know they were entering hostile enemy territory..., so you have to have a little respect for the fact that they chose to brave the storm. And my impression was that they are nice men...deluded, but they didn't seem like Satan's minions(Paul Offit is another story altogether).
First up, Dr. Thomas Insel, director of NIMH. He admitted the increased prevalence of ASD and said that while genetics do play a role, we need well-designed studies to get at the root of the environmental factors. When he suggested developing a "vaccine" for autism, there was an audible gasp in the audience. He quickly explained that he didn't mean a shot per se, but a prevention strategy. Still. Gasp.
At some point during Insel's speech, Jenny McCarthy and her crew came sneaking in through the back door. She remained crouched for the rest of the speeches.
Dr. Sam Wilson spoke next. He is the director for the Environmental Health Sciences Dept. at NIH. It was even more difficult to listen to him because a) I was dying to see what Jenny was up to and b) he was seriously talking down to us as though we did not have any grasp of science or the ability to process "big words". Besides that, the man is just not a speaker. The monotone was not conducive to anything but a nice nap. People around me were grumbling about being talked down to.
After the speeches were over, Jenny had her camera people set up to film people lining up to ask questions of the speakers...but then she left. When I asked her later why she didn't stay to watch and ask a few questions herself, she said that it was the parents' time to talk, and that she didn't want to overshadow us. Admirable, but I would have loved to see it nonetheless.
Questions were for the most part rather hostile. One mom angrily questioned the use of the word "vaccine" to this audience. She felt it was purposely chosen to anger us. Most of the audience (including me) seemed to disagree, but I think we can all agree that it was certainly an ill-chosen word, considering the audience and what we believe happened to our children.
Another question from Dr. Deth was really more of an admonition, in which he explained that we as parents are extremely well-versed in the science and do not need to be patronized. Wendy Fournier asked when we would see a vaccinated vs. unvaccinated study. I believe it was at this point that Insel showed his true thoughts on this issue and asked if we'd ever seen a child die of...I don't remember...measles or something. Answer:no. But I will tell you that the only illness we vaccinate for that my mother is scared of is polio. But if I had it to do all over again, I would not vaccinate my child against polio. Why? you might ask. Because polio has been eradicated in America and the only cases of polio we've seen over the last few decades have been cases CAUSED by the vaccine! So if I am afraid of polio, my best bet by far statistically is NOT to vaccinate! Insel also said that we should present a well-designed study and it would be considered. PLEASE. If NIH, CDC & pals thought such a study would exonerate their precious vaccine program, it would have been done yesterday and flaunted before us all. The vaccine schedule is out of control. Thanks to the mom from EOHarm, who posted this study out of the Netherlands showing that not only is autism higher in vaccinated populations, so is asthma, aggression, eczema...the list goes on. Take a look for yourself:
http://www.vaccination.inoz.com/Vacc%20vs%20unvacc%20results%20survey.pdf
Of course Generation Rescue's phone survey showed similar data. Our children are more sickly than ever before. Rep. Maloney from New York has a bill which would mandate that the government perform a vaccinated vs. unvaccinated study. Gee, think it will pass?

Lots of questions were asked, very few concrete answers were given. Some fireworks, but no promises, no resolution. Overall a standoff...and I wish I saw an outcome in my crystal ball, but it's not looking good. Jenny McCarthy has made the hope of a safer vaccine program seem more attainable...but it still seems light years away.

Saturday, January 19, 2008

The Roots of Autism- Dan Olmsted

While we have several friends in the world of journalism, Mr. Olmsted is in our top five "best buds" list. Here I should give a "shout out" to some of our other friends in the media world: David Kirby, Deidre & Don Imus, Ashley Reynolds, Oprah, Larry King, and Jill Neimark.
Dan Olmsted penned the Age of Autism series as a senior editor for UPI and now manages the Age of Autism blog as senior editor. http://www.ageofautism.com/ I encourage you to check it every week, as it always contains timely & well-written commentary on current events related to autism. You can also read the original series using the links to the right on the Age of Autism site.
In his talk at the NAA Conference, Olmsted discussed some of Leo Kanner's autism cases.Kanner wrote a paper in 1943 which contained case studies of 11 children with autism- these were the first known cases of this disorder. There are no credible pre-1930 cases(important due to the mercury factor in terms of use in commercial products, which did not begin until this time period).
Mr. Olmsted began looking at the eleven case histories, starting with the first three. Through extensive research, he found a common denominator- parents of these children worked with mercury-containing fungicides. Coincidence?
Even if mercury is not the only factor, more and more research is coming to light which highlights the probability that chemicals and toxins play a role in the development of autism.
Interestingly, case 1, Donald T. recovered significantly from autism due to medical treatment for another ailment-juvenile rheumatoid arthritis. Hmmmm...auto-immunity at play as well. Sound familiar? He was treated with "gold salts", a remedy used at the time. From one of Mr. Olmsted's columns:
That caught the attention of Boyd Haley, a chemistry professor at the University of Kentucky and a leading proponent of the mercury-autism theory. In our last column we reported the results of a test he conducted to see whether gold salts would pull mercury off a chemical compound.It did. Gold salts "can reverse the binding" of mercury to molecules, Haley said, adding, "This does lend support to the possible removal of mercury from biological proteins in individuals treated with gold salts."
Parents of affected children have been intrigued by this, but have been reluctant to introduce yet another metal to bodies of children who have shown difficulty in excreting them, and gold has no place or function in the human body.
Fortunately Dr. Haley has created a safe chelator which can remove mercury more safely than any of the compounds now available. Hopefully it will be approved within the year.
Once again he the need is highlighted for a study of vaccinated vs. unvaccinated populations, as well as the interventions parents say are working. This has become our battle cry, and we will not lay down our arms until these demands are met. Militant? Nah. Necessary.

Friday, January 4, 2008

Score One for the Plaintiff- Dr. Bradstreet

I encourage you to look at the notes for Dr. Bradstreet at the link to the right of this blog- his talk was to be entitled "Biomarkers in Autism" and looked fascinating. Basically it discusses the five broad categories of abnormalities in autism and how to test & treat. I think you will be able to gain a lot of information from the notes alone.

However, instead of giving that talk, Dr. Bradstreet gave us the case history of little Colten Snyder, one of the Autism Omnibus test cases. I encourage you to read the transcript of the case for yourself:
ftp://autism.uscfc.uscourts.gov/autism/snyder.html
I have only read through Day One, but will continue to read transcripts of all 3 cases as time allows. I am particularly interested because we are one of the almost 5,000 families seeking justice in these proceedings.
Basically Dr. Bradstreet laid out the medical facts of the case (Colten is his patient) and asked us as audience members to render judgement based on the facts. Granted, we may be a biased audience, but the facts were compelling. Dr. Bradstreet shared some of the underhanded tactics used by the opposing lawyers in these cases. It seems that the crux of their case is to attempt to undermine the credibility of those on our side and also label any science supporting our position that our children were vaccine-injured as "junk science". I was glad to see that our lawyers immediately and boldly addressed this smear campaign head on right from the outset of this test case...yet the other side continued to utilize it, because you see, THAT is the majority of their case! Dr. Bradstreet pointed out to us some of the ludicrous attempts to smear him personally. The opposition wants to paint DAN! doctors as exploitative and money-hungry. They attempted to show that Dr. Bradstreet personally monetarily benefitted from the expensive IVIG treatments prescribed for Colten- treatments which incidentally seemed to help him very much, according to testimony. It must have been quite embarassing for the lawyer doing the questioning to find that Dr. Bradstreet himself, through his charitable foundation, paid for many of these treatments. Perhaps the most bizarre accusation left hanging in the air was that Dr. Bradstreet might perform exorcisms to treat autistic children. He said he was jaw-droppingly stunned by that one. I think this was the clearest example of the strange contortions the lawyers are taking in order to use any means necessary to discredit the true good guys in this fight.
Towards the end, Jim Moody gave a bit more detail on the cases. From the SafeMinds web page:
Jim Moody chairs the government affairs committee of SafeMinds. He is the founder of Citizens for a Competitive Economy. Jim is a practicing attorney and is active in cause-related advocacy for children with autism.
Perhaps the most interesting aspect of the Omnibus proceedings (not discussed at the conference)is the case of Hannah Poling vs. Sec HHS. This was a "thimerosal causes autism" test case, and the government conceded the case. Details are sketchy, because the records are sealed, but apparently the thimerosal exacerbated an already existing condidtion. I am confused as to why it's all so secretive and wonder if we will ever be privvy to the details. We deserve to know not only the details of the ruling, but also the evidence presented. And that's just the minimum of what we deserve for the damage done to our children.
Update: Here is an article by David kirby about the conceded case as well as the ruling:
http://www.huffingtonpost.com/david-kirby/government-concedes-vacci_b_88323.html
http://www.ageofautism.com/2008/02/full-text-autis.html