NAA Conference Notes

Behavioral Therapy that Addresses Root Issues- RDI

2008-03-20T16:57:00.001-07:00

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.

Advocate Without A Dog in the Hunt- Deirdre Imus

2008-02-29T13:54:00.001-08:00

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.

Notes from Neubrander

2008-02-01T13:42:00.000-08:00

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.

Raise Your Voice- Political Advocacy

2008-01-31T13:24:00.000-08:00

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.

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

2008-01-26T09:04:00.000-08:00

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.

The Roots of Autism- Dan Olmsted

2008-01-19T12:07:00.000-08:00

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.

Score One for the Plaintiff- Dr. Bradstreet

2008-01-04T04:53:00.000-08:00

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

Doctor Dad

2007-12-29T10:19:00.000-08:00

Dr. Bryan Jepson is a father to a child with autism. It saddens me that it took the reality of this disease being injected directly into the lives & homes of doctors & scientists to force some of them to look beyond what the medical establishment was telling them to believe...but I am ever so grateful that physicians such as Dr. Jepson have taken the biomedical ball and run with it.

He dicusses his journey here: http://www.thoughtfulhouse.org/bjepson1.htm

Prior to autism, Dr. Jepson was a board certified emergency medicine doc.When his son was diagnosed, he quickly began to see that the paradigm to which the majority of doctors subscribe is faulty. He now treats children through Thoughtful House in Austin. In addition, he has written the book Changing the Course of Autism, which is a fabulous book to take to your pediatrician (I did!). The book backs up its assertions with science- and LOTS of it.

You can order it at this link:
http://www.thoughtfulhouse.org/pr/jepson_book.htm

In his talk, he discredited some of the lame explanations for the current epidemic we now face. He showed that there is indeed an epidemic, and that it is NOT due to changed diagnostic criteria. In 1994, the DSM criteria were actually NARROWED rather than broadened! Some have also argued that autistic children may have previously been misclassified. A MIND Institute study appears to debunk this claim. At the claim that maybe physicians now may be more skilled at diagnosing autism, there was audible laughter in the audience of parents, because those of us who have been through this know that is quite a laughable assertion.
Numbers are rising all over he world, and we do not even know our own current rates. The 1 in 150 statistic we hear batted around was from kids born '92-'94.
Dr. Jepson then laid out the evidence that autism is an autoimmune, inflammatory illness. The gut is a primary source of the problems these children face.
He also discussed the role of thimerosal, and discussed the fallacy of relying on epidemiology for answers. Mercury IS known to cause some of the negative physical changes we've observed in these children such as autoimmune reactions, immune suppression, and inhibition of the methylation cycle & glutathione production. His hypothesis seems to mirror my own- these kids may have had a prediposition & other toxic exposures, but adding mercury to he mix SURE DIDN'T HELP!
He finished by discussing the good news- autism IS treatable. It boils down to 1)treating deficiencies, 2)getting rid of what is causing harm, 3)breaking the inflammatory cycle, and
4)rebalancing neurotransmitters. I urge you to click on the power point presentation link to the right of this blog to get more details on the treatment aspect.

Here also is another presentation of his:
http://www.thoughtfulhouse.org/0405-conf-bjepson.htm

And by the way, I must admit frankly that it took autism being injected into my home for me to open my own eyes. I wish I could say I would be fighting the injustice of a generation of poisoned children just because I saw what was happening. But here I am with you, Dr. Jepson. And I am proud to stand beside every person who is trying to save these children and prevent more cases. Onward.

Oxidative Stress Research from Dr. Jill James

2007-12-22T16:46:00.000-08:00

I have heard Dr. James speak twice now, and while the subject matter is high-level science and has a very real tendency to make my head spin, the conclusions are fascinating. I feel privileged to have Jill James residing here in Arkansas, because not only has she done some brilliant and helpful research, she works tirelessly to help our children. She is currently seeking to begin an Autism Resource Center in Little Rock.

On to the take-home points of her research: These children have reduced methylation capacity, and glutathione cannot be adequately synthesized. Oxidative stress is increased in these children. She stresses that it is undetermined as to whether these biomarkers are present all along or are a consequence of autism. I think one of the most important findings of her most recent research is that "autistic children may be genetically more sensitive to pro-oxidant environmental exposures". Guess what she used to prove this with cell lines? Thimerosal.
Additional information she happened to find was that we as parents(moms in particular) seem to have risk factors. As in the case of our children, we are unsure at this time which of these results may be due to autism (in our case the stress of having a child with autism) or whether they are predictive...in any case, she highly recommends that we get our homocysteine levels checked. In addition, we also seem to have some of the same methylation cycle & detox issues as our children. Hopefully more research on these important topics will follow.
On another note unrelated to her talk, Dr. James has been working tirelessly to create an Autism Resource Center in Little Rock. As a baby step towards this goal, our Children's Hospital has become part of Autism Speaks' Autism Treatment Network, or ATN. Her goal is to have a "one-stop shop" where parents will have all resources available at their disposal, and a team of doctors...who have a clue:) Here is AR, we have an abundance of cluelessness and outright hostility towards biomedical from the medical establishment, as well as a full-on love affair with vaccines. I applaud Dr. James and the parents working with her as they attempt to turn the mighty river.

Beautiful Son is Beautiful

2007-12-21T11:20:00.001-08:00

Huh? Is the title a typo? Not at all. The documentary Beautiful Son was shown to us on Friday night at the conference, and we were fortunate to have the producer (and father of that beautiful son)- Don King- there at the conference. Please go to the website http://www.beautifulson.com/ to see more. In addition to being producer and dad to Beau, here is more about Don, from the site:

Don King: Director, Cinematographer
Don King has been making waves in Hollywood for years. He is best known for his underwater cinematography and second unit D.P. work in such films as Cast Away, Die Another Day, Riding Giants, Blue Crush and Charlie's Angels II. Don is currently shooting (on land & sea) for the Emmy award winning TV series LOST.

And while the subject matter is at times hard to watch as it mirrors so many of our own arduous personal journeys with our children, it is absolutely beautiful, both from a cinematography standpoint, and also from the perspective of admiring Don & Julianne as parents. I am especially grateful that this couple shows the journey to recovery, warts and all. They have included some of the tension between themselves as a couple and even the struggles that siblings face.
PBS will be showing this film in April, but here's the catch: it will be up to each local station as to whether to air it or not. I'm sure Don & Julianne will let us know when to flood our stations with phone calls, and believe me, you should do it. This is a film you do not want to miss!

Jenny, Jenny, Jenny

2007-12-19T19:02:00.000-08:00

Wow, this woman is a firecracker. She grabs your attention and won't let go. Despite a liberal sprinkling of potty words, her mischevious nature makes you want to join in on her fun. She gave an interview to a local station, and here is the link to the unedited version:
http://www.11alive.com/video/player.aspx?aid=83449&bw
There was already a good report about her appearance at the conference written on Age of Autism. It is a fabulous site edited by Dan Olmsted with ongoing commentary by a very talented group of writers. Check it regularly. The address is www.ageofautism.com
This particular piece links you to the phone call Ms. McCarthy placed to the CDC during her speech to us:
http://www.ageofautism.com/2007/11/jenny-mccarthy.html
I spoke with her about creating a very general short (5 min. or less) DVD in which she would give an endorsement of a group getting information about autism recovery to parents. This video could be used by biomedically-based organizations such as NAA chapters to assist in fundraising efforts. We are all aware that Ms. McCarthy certainly can not make appearances around the country for any organization that asks, as much as she would like to help. We also know that it would be too difficult to film a separate DVD for everyone who asks…therefore creating a general DVD that could be used by a large number of organizations trying to meet the needs in their region for children & families would be a God-send, and hopefully this would also alleviate the volume of requests that TACA receives for personal appearances and endorsements.
I really hope that there will be follow-through on this. She seemed very genuine in agreeing to do it, but I can only imagine the million directions she is being pulled in.
She is the spokeswoman for the wonderful organization TACA Now, which is a CA-based biomedical support group. Their website is : www.tacanow.com It offers some wonderful resources. Check it out.
Also, you should read her book, Louder than Words (also quite littered with the f-word, but still worth your time). In addition, she is working on a documentary. If it reaches general audiences, it will rock the boat even more than she already has. And louder than any words could say, thank you from the bottom of my heart. You have made me hold out hope of a safer vaccine program in my lifetime. Hope where there was none. Thank you, fellow warrior mom.

The Kings of Gastro- Wakefield & Krigsman

2007-12-10T17:29:00.001-08:00

Drs. Wakefield & Krigsman shared 90 minutes and primarily discussed the gastrointestinal findings they are having in children with autism. They showed numerous photographs of both the external manifestations as well as internal findings photographed by a "pill-cam". External symptoms might include severely bloated bellies, posturing the body to place lots of pressure on the abdominal area, and unusual bowel movements. The photos taken internally with a pill-cam show lesions and inflammation which cause some of these children so much pain.

From the Thoughtful House website:

Many children with CDDs have GI symptoms that precede, coincide with, or appear after the onset of neurological symptoms or regression. A child should produce one formed stool per day--anything else merits attention. GI symptoms common in autistic children include constipation, diarrhea (often described as mushy or grainy, not watery), abdominal pain, abnormal posturing, malodorous stool, undigested food in stool, abdominal distention, and failure of the child to grow. Many children don't present obvious symptoms until they're older, and because of communication and pain-response issues, the GI symptoms of many autistic children are completely overlooked. , There is also a subgroup of autistic children that appear to lack GI symptoms, but without endoscopy evaluation, the question of an occult (hidden) GI inflammation remains unanswered.

The basic take-home message that I got from the presentation is that if you have a child who shows any possible symptoms, check it further. The doctors at Thoughtful House have helped numerous children to feel better. Once you have better information on what you are dealing with, effective treatment is available.

The Thoughtful House website to check further into supporting research. The web address is www.thoughtfulhouse.org

Here is a link to one of Dr. Wakefield's presentations:
http://www.thoughtfulhouse.org/0405-conf-awakefield.htm
and Dr. Krigsman:
http://www.thoughtfulhouse.org/0405-conf-akrigsman.htm
Both of these links show photos of both internal and external manifestations as well as lots more detail about the findings and research.
If your child has gastro issues, Thoughtful House is THE place to go.

SKILLS Program -Dr. Granpeesheh

2007-12-07T12:08:00.000-08:00

Before I begin, I want to remind you that if you look to the right of the blogs, there is a link which will take you to the PowerPoint presentations for all speakers who used them, including Dr. Granpeesheh.
Doreen Granpeesheh was a new name for me, because I am almost completely unfamiliar with ABA and its cousins, floortime, Son Rise, etc.
She was discussing her new program SKILLS (Shaping Knowledge through Individualized Life Learning Systems). She gave a brief overview of ABA and that it is meant to improve deficits(such as social skills & communication) and diminish excesses(such as stims & tantrums).
Her new SKILLS model will hopefully be available in the spring at an extremely low, reasonable price (she is hoping around $50 and has applied for lors of grants to make this possible). She wants parents to be able to do this at home, because most of us cannot afford traditional ABA.
It is comprised of a HUGE online questionnaire which will highlight your child's specific deficits & excesses, and then you will work with your child step-by-step to acheive each goal that he or she needs using lessons you will download.
One thing the CARD curriculum attempts to shape is "Theory of Mind". Many of these kids do not understand that the thoughts of others are separate and different than theirs. In other words, "Because I know it, he knows it." The basic sections of the curriculum include: language, play, adaptive, motor skills, executive functions, cognition, social skills, and school skills (non-academic).
A study monitoring children who were taught using the CARD curriculum showed the following gains after 3 years:
*53.8% no longer had an ASD diagnosis
*46.2% went from Autism to PDD or Aspergers
* Average IQ score gain of 20 points

I encourage you to download the presentation to look over more details if you are interested.
The CARD website is http://www.centerforautism.com/
You can also hear her speak about ABA in videos from Autism Media at http://www.autismmedia.org/media17.html

In addition, I will update this blog and let you know if and when I have more information about the SKILLS assessment if it becomes available to parents.

Katie Wright Speaks

2007-12-07T08:03:00.000-08:00

The organization Autism Speaks is run by Katie's parents, Suzanne & Bob Wright. Bob is the former CEO of NBC & currently heads up GE. Katie's son has been helped by DAN! and biomedical, and she has been very vocal about her belief that vaccines triggered her son Christian's autism. Katie showed a wonderful video at the NAA conference in which she shows & describes her son's decline. I believe that the video will be made available, and I'd love for you all to see it.
After Katie showed her video and said a few words, we were given the opportunity to ask questions. A bold audience member asked when Autism Speaks would clean up its act and put the ample funds and the mouthpiece they have created in the right direction. Katie's parents were seated in the audience, and she replied, "Now don't get me in trouble...", but then proceeded to explain that AS is going to make positive changes. This was later confirmed by an NAA officer who sat down with the Wrights. We were not given details, but hopefully there is going to be a sea change at the organization which has in the past solely funded useless research and has allowed anti-treatment gurus asuch as "Autism Diva" to take over their message boards. I find it telling that Katie serves on the board of the NAA rather than Autism Speaks.
Katie appeared on Oprah some months ago and begged for the opportunity to mention the vaccine connection -reportedly she was told she'd be "off the show" by the producers if she did so. Oprah granted her permission over a commercial break, and she was allowed to say a bit (some of which was edited).
To see David Kirby's interview with Katie, go to:
http://www.youtube.com/watch?v=IUNO25l1zFs
You will see the rest of the interview to the right of this one-it is in 4 parts.
After this interview was distributed, Katie's parents wrote a letter distancing themselves from Katie because they were worried about offending their big contributors. It seems that there has been reconcilliation and the Autism Speaks ship may be slowly turning due to Katie's refusal to back down.
A common refrain in the biomedical community is "Autism Speaks doesn't speak for me."
But YOU do, Katie. And I thank you for being such a powerful voice.