Wednesday, October 31, 2007
Tuesday, October 30, 2007
Hi-I wanted to contact you concerning your coverage of autism. I do not live in your area but since you, as a member of the press have asked for input I am taking this oportunity to express my opinion concerning the presses typical coverage of autistic disorders.
I am the Father of a 4 year old by who was diagnosed with an Autistic Spectrum disorder at 18 months. To our knowledge our son has never recieved thimerisol in any of his vaccines. In fact, on the day he went for his 18 month check up he was diagnosed. This check up included giving him the MMR vaccine. To be clear-he was diagnosed as literally minutes before recieving the vaccine.
I do not discount the posibility that mercury or vaccines play a role in some childrens autism. However i find it to less likely than the billions of other potentialy viable causes. I say this because it has been tested and tested and tested and the tests do not indicate this is the cause. Meanwhile just about everything else has not been tested.
You, as a member of the press are looking for controversy. I understand that. Unfortunately you, and the rest of the press are missing the real controversy which is the blatant discrimination by the medical insurance industry. Over 90% of health insurance policies will not cover what main stream medicine recommends to treat children with these disorders. Occupational, Speech and behavioral therapies.
There is no controversy among health professionals that these interventions, when administered early, result in the best outcome for our children. Yet this contoversy is drowned out by the dead horse argument of vaccines and thimerisol. Moreover the paltry sums of funding going to finding treatments for autism are being drained to fund even more testing for an argument that has already been decided. The press has an obligation to report on controveries that affect public policy.
Where is the report that asks the insurance industry-Why are you descriminating against Autistic Children? If you investigated this, you will find that the justifications for this has no merit. We live in a society in which treatment or erectile dysfunction are funded by insurance yet treatments for autism are not-why? The most blatant effect of this descrimination is the economic reality that without insurance unding for autism treatments, no economic incentive exists for finding better treatments. Who is going to fund research into something they will not be paid for? Examples of the lack of economic incentive and/ or misguided priorities for research in finding better treatments are numerous.
I will give you one: Medical science has known for over forty years that abnormal EEG's, siezures and autism are closely related. However, to date, no research has ever been conducted to determine whether autistic children- who are given drugs to correct abnormal EEG's and eliminate the potential for siezures-autistic symptoms get better or worse after treatment with these drugs. The why is obvious-drug companies will be paid for treating siezures, they will not be for treating Autism.
My wife and I funded out of our pocket over $30,000 last year for main stream medicine recomended therapies. Afer considerable effort our insurance company reimbursed $408. Because my insurance was under Cobra law; due to my changing jobs I paid for our health insurance. The premiums were $1200 per month or $14,400. I currently make $84,000 per year plus benefits. Congress is currently trying pas legislation to give free insurance to children whose families make up to $64,000 per year.
Yet this coverage will not cover Autism nor will the coverage the rest of us pay for through our employer sponsored plans. A few states are passing legislation to change this problem. However, neither the federal government under which ERISA sponsored plans (the laws which govern insurance plans for most of us) or my state has passed such legislation.
I do not know what your state is doing. But I urge you to find out. We are overwhelmed with the 24/7 job of caring for a child with an ASD. It is outrageous to me to have to pay insurance pemiums and taxes whch fund every disorder except the one my son has.
Richard Fauth, P.E., M.B.A, CSSB.
Monday, October 29, 2007
Despite our "detour" in St. Louis and getting to Springfield later than expected, Dr. Ayoub still welcomed us to the hospital and allowed us to get a feel for his work environment outside of his autism and vaccine studies.
My favorite part of the interview was when he explained how each parent should do his or her own research to make informed decisions about vaccines. I really appreciated how he shared his opinion, but also recognized that each family needs to make up its own mind regarding the health of its children.
I'm thrilled for everyone to see the interview as part of the series - you won't want to miss it!
This is the second family I have traveled with Ashley to interview. While I only experienced a tiny clip of the Weinmaster family life, I now understand a little bit about the daily struggles that parents and children with autism tackle.
I heard Linda share her story about moving to Kansas in order for Adam to receive better schooling; I listened to Adam's older brother talk about the difficulty he has connecting with Adam; I was struck by the variety of alternative medication Linda has sought out, but what hit me the hardest was Linda saying that she wants to see Adam have a friend. For me, that phrase captured the sense of not belonging and loneliness that comes with having autism.
Sure, Adam has tried to fill that loneliness with a fascination for ninja turtles and hobbies like defeating the next level on his nintendo game, but plastic toys and television characters can only fulfill a person so much. Adam's mom wants him to have a friend.
Adam's mom, Linda, also briefly described Adam's schooling, which caught my ear because of the reading I have done concerning the transition from schooling to adulthood. She mentioned that it is not uncommon for Adam's entire class to break out in a tantrum. It is a chain affect: one student becomes upset and soon the entire class is throwing a fit. These shared tantrums may lead people to think that students with autism connect on some level, but Linda did not view it that way.
There Adam is in school, surrounded by students like himself, yet no connection, not a single friend. My hope for this portion of our series is that our viewers develop an understanding for the unique bond that a mother shares with her son; most importanly, I hope they see how fragile that bond is when the son has autism.
Just to re-introduce myself, my name is Jessica Mustain and I work along side Ashley Reynolds doing research for the series Combating Autism from Within. My latest project has been compiling information on a family from Lawrence, KS that we went to interview this weekend.
The team of Ashley, Scott, Mark, and myself left Sunday afternoon and returned today (Monday the 29th). Our first stop was at the house where we interviewed Adam and the rest of his family. Right away we heard about the struggles that the family had faced with their decision to move to Kansas, from Nebraska, all to help Adam with his health and education.
Adam was VERY talkative and really knew his facts about his disorder and what his mother was doing to help inform people. I found it very interesting to hear Linda talk about the connection genetics played in Adams disorder along with his heavy mercury levels, that she claims are from vaccines.
In the basement of the house, the family has a sauna to help with Adam excrete toxins. Adam loves ninja turtles, batman, Nintendo, and anything a young boy would typically like. He was fun to be around and hardly had any outbursts until Monday morning when we followed him and his mother to his doctors appointment to have blood drawn.
At the doctors appointment Adam was uneasy and seemed in a completely different mood than from the night before. Right when we arrived, Linda told us that we were in for an entirely different side of him and that it hadn't been an good morning.
Inside the doctors office, Adam began getting nervous and really upset that we (as a crew) were filming him. There was one instance when he shouted for me (calling me by name) to stop filming him. This shocked me for a few minutes, not because he wanted me to stop filming, but because he remembered my name after only hearing it once the day before. Thats another amazing thing about Adam, he remembers names and dates like nobody's business!
He began getting his blood taken but after only 4 out of the 8 viles, his blood slowed from flowing and eventually stopped. Adam threw a tantrum but luckily the nurse said that there was enough blood and that he didn't have to "get stuck" again.
Linda told us that he was brave. There's no way I could sit through some of the things he goes through!
Overall, it was a great learning experience for me. I got to actually witness what a family goes through when one member has autism. It was truly amazing getting to spend a significant amount of time with the family and be able to talk to them on and off camera about our project.
I can't wait for you all to see this family's story in the series.
Hello! Thanks for covering such an important topic. Here is what I think needs to come to the forefront. I'm the mom of two kids with ASD so I think I'm qualified to weigh in.
For one, wwww.tacanow.com and www.austim.com have some fabulous information about autism that is rarely talked about.
Other than that: 1) Yeast- Candida Albicans. This is a "theory" that in my opinion is right on that affects all of our ASD children. It causes problems such as sensory issues, weak immune systems, fatigue, irritability, speech delay, digestive issues, rashes, eczema, poor appetite, sleep disturbances, sound sensitivity and much more. It is worth looking into and very valid
2) Gluten Free Casein Free diet- supposedly controversial but plays into the yeast situation. Very effective when used long enough...i.e. most parents who claim that this doesn't work have only tried it for a month at most. It takes up to 9 months for the body to rid itself of gluten and casein remnants.
3) Vaccines- I know that this is also supposedly controversial but it is fact that not only is thimerosal used in vaccinces, but just as bad as that is the fact that formaldehyde, arsenic, aluminum bicarbonate (a neurotoxin), tin, and antifreeze are used at preservatives. Would you feed this stuff to your infant in his or her bottle? Research from the cdc.gov website the side effects of formaldehyde and the other ingredients including thimerosal. Isn't it quite interesting that acute mercury poisoning and autism share the same exact side effects? Then look at the others...do you think that brain damage and seizures is an acceptable side effect?
4) Allergies- vaccienes are also known to be the culprit of food allergies like wheat, milk, egg, gelatin and latex. This is because these ingredients are all present in vaccines and we introduce them to our infant children when they are less than 48 hours old to their very immature immune systems
5) Also talk about why it is that medical doctors seem to offer little or no support to those whose children have been diagnosed with autism. It's because they don't know much of anything about it to begin with . Most of a parents best education comes from other parents- not doctors.
I also wanted to point out: Isn't it interesting that parents are taught to look to our pediatricians/doctors for advice on autism from the moment they are diagnosed. The problem is that once a parent approaches the doctor, suddenly they know virtually nothing beyong "Hey, let's get your child onto a 2-6 months waiting list (if you're lucky) for speech therapy, Physical therapy and Occupational Therapy. Let's cross our fingers and hope for the best!" Although I agree that these therapies play a very important role in helping children with autism, I don't think it's enough.
Also, I am outraged that our insurance companies cover these "band-aid" treatments (as I have called them) but they do not bother to cover the core of the very effective treatments that parents are using to help their own children. I'm talking about proper supplements, vitamins, diets and anti yeast/fungal medications aka biomedical treatments. These are effective treatments....I am amazed at how few doctors actually recommend special diets for people with most any medical condition. I am also annoyed that insurance does not cover testing for vitamin deficiencies (another problem with our kids) and enzyme deficiencies. There should also be testing of our childrens blood work to determine how much of a problem yeast actually is for an individual child so that an appropriate treatment can be determined.Basically, I am upset because insurance companies and medical doctors are all so concerned about putting a "band-aid" over the effects that have already taken place but no one wants to get to the heart of the problem and look deeper inside of the child to fix what can be fixed. If we can do that, then it would be a lot easier for parents to deal with the rest of what is not able to be fixed and can rest easier knowing that they did everything they could do to help their child when all is said and done.
Want to know more? feel free to contact me! or view my story in a nutshell http://www.associatedcontent.com/article/412250/controversy_healing_autism.html
Those who advance the vaccine-autism connection like to tell us that the Amish don't vaccinate, and that they don't have autism. This is a myth, easily refuted by talking to doctors who treat the Amish. Oklahoma has a couple large Amish communities. Talk to some pediatricians who care for Amish children. You might find child psychiatrists in nearby Tulsa who will tell you what they have observed.
I am writing regarding the article that you are doing on Autism.
We live in north cenral Kansas and are raising our 5 year old granddaughter, but we are Mommy and Daddy.
Destiny was diagnosed offically in April 2006 with severe autism. We have had her in the public school system even before the diagnonis. After we went to Childrens Mercy they said that the more school she had the more she would learn, so she went to both the morning and the afternoon classes at the at risk school program.
In June of this year we got Destiny a service dog. He has been totally amazing. We have been able to do some search and rescue work with him on finding Destiny when she wonders off and he has shown us that when it gets right down to it, he found her.
She takes him almost everywhere with her and he is a comfort to her. She hugs on him and is getting 100 percent better about taking her melt downs out on something besides her dog.
There are so many people out there who have no idea that a service dog can be such a blessing for these children. I would really think it would be great if you could mention that these animals are available. We got our dog, who is a big beautiful golden retreiver in June of 2007. He goes to school with Destiny and he is picking up on her melt downs sometimes even before the teacher and he gets up and goes to her.
We acquired him from Cares, Inc in Concordia, Kansas. They are a non-profit organization and the fee for the dogs is $525. Of course you have to come to Concordia to school for 1 to 2 weeks, depending on your diagnosis.
Prior to finding Cares, Inc. in our own backyard, I had been researching dogs on the internet and they were asking for thousands and thousands of dollars for them and then there was the trips to Ohio, California or other far away places.
Destiny is doing very well, we are getting by and we will do our best to make her world all it can be, but it is a joint venture. It takes more than us, it takes our family members, the teachers, the paras, the bus driver, the principal, the other children at school, and so many more people.
I have been known to chase people down at the store and give them a business type card that states something about Autism on it. I don't do this to embarrass them, but to educate them.
Good luck on your article !!
My best advice to you is to have a big box of kleenex handy. The stories that you will hear will break your heart. It seems so unfair for these children to be locked in a world that seems to have no real key.
Thank you for your time,
Sunday, October 28, 2007
Ashley...please keep us posted!--AR
My name is Ashley and I live in Indiana. I have a 3-year-old son who is currently being tested for Autism. He goes to the doctor Tuesday, October 30th so we can get a referral to a child psychologist. He shows a lot of the signs for it, but we have to have a medical diagnosis to get the treatment for it. As his mother, I am sure that something is wrong and I am fairly certain that it is something on that spectrum of disorders. He does not talk the way he should, he has lost words, he shakes when he is excited, he acts like he can't hear us (and I know he can, his hearing has been extensively tested). He doesn't acknowledge anyone most of the time. He has just started to give hugs freely within the last six months. He loves to repetitively clap his hands. But he is an amazing child and he is soooooooo adventurous.
Something that should be covered, if it hasn't already, is to cover the ranges of children with Autism Spectrum Disorder. I mean by that is some of the kids behavioral issues when at home or outside. Not every child acts the same. Yes, they do share some issues; however, there are some children who acts out in different ways.
To show the public that not every autism child acts like this or that. And when a child is having a meltdown, study what other people see or think. So that the public can understand what a parent is going through during that time. So people can understand that we are not dealing with our child's emotions but everyone else's who is reacting to it in some way or form.
Also cover Echolilia in Autism children. I don't know if you ever heard of it but it effects at least 85% of children who have autism. And there are two different kinds of echolilia, you would be surprise how many parent's children have it and they don't know to much about it or have families like mine who does not understand what it is and why it is done. Some think that you can just make it stop but what they don't understand that children do it because they need to and if you try to stop it, they can pick up something else that can be even worse to replace what they are doing. And it is still echolilia in some form. Please cover that too, alot of parents on cafe moms (the newbe's) may not know to much about it.... I find it a good information for everyone.
I am sorry but I forgot to mention to add eatting issues. My son is 8 and does not eat stuff and he is growing but he is also losing weight to. Alot of families struggle with it so much and there are alot of people (like me) who can not afford to pay the experts to help me to get him to eat. There are parents who have no choice but to put their child on feeding tubes.
I feel that if we make the public know about that, maybe the state can start to look at helping families that are going through this with some kind of government help. I know I want my son to eat and gain weight but we are not so lucky to afford to pay or may not have the insurance coverage to get it done.
Also you should put out there how many families who have children who are disable, how hard it is for them to get coverage. Medical coverage is so hard to get now, but when your child is sick, they don't except these children who need it the most. I feel that if this is brought out, it would show the president how important the state should cover our children. Because if they don't then there will be so many children in the state that are not covered when they need it the most. I feel that the insurance companies should except these children because they need it so much and they know it too!!!! I hope you can take that and run with it too.
We recently traveled to Camdenton, Missouri where we spent time with the Everhart family, a family of six. Halie and Brandon have autism.
When we arrived in Camdenton, Missouri we went to Brandon’s Tae Kwon Do class. We filmed Brandon doing his karate. This is where we first met the family. I had a lot of fun shooting them with my camera.
Mercury causes mercury poisoning and should not be injected into any form of life.
Dose makes the poison, and just about any substance has a potential for harm. Fluorine is dangerous in some forms, yet safe enough for toothpaste in another. Chlorine is a deadly gas, yet when combined with sodium, another poison, forms common table salt.
Mercury is a naturally occurring element - the average human body contains about 6 millgrams. A typical flu shot contains 25 micrograms. It would take 240 flu shots to deliver the amount of mercury that we carry already. There is no proof that the miniscule amounts of mercury, once contained in scheduled childhood vaccines in the form of thimerosal, is harmful. What's more, there is no credible mechanism by which thimerosal, at such low doses, could cause autism. Since thimerosal was removed from scheduled childhood vaccines in 2002, there has been no noticeable decline in autism diagnoses. These inconvenient truths have yet to be honestly addressed by vaccine conspiracy buffs.
The medical community caused autism, and wants to hide the truth from the rest of us.
Raise your hand if you believe that 700,000 US physicians could successfully conspire to keep the greatest public health fiasco in history from becoming public. Not to mention government health officials from the past six administrations, including Democrats and Republicans whose code of silence prevents them from ratting the other side out for political gain. Talk about preposterous.
The debate could be ended tomorrow if the mercury defenders would agree to study the vaccinated vs. unvaccinated children.
Wrong again. As Prometheus as Photon in the Darkness explains:
If you want to be able to use the data to find possible causes of autism, it works better to match cases of autism with controls who are the same age and sex. This way, you can look at more than one possible association. On the other hand, if you compare a group of unvaccinated children to a group of vaccinated children, all you can find are conditions that are associated with vaccination.
The only way to end the debate is if both sides agree to accept the scientific consensus. One side already does, so in a sense we're half way there.
The Amish don't vaccinate and they don't have autism.
This canard is based solely on a poorly reported story by Dan Olmsted of the Associated Press. He claims to have trudged the length and breadth of Pennsylvania Amish country looking for autistic kids. Olmsted, who lacks the medical training necessary to identify autism, missed the cryptically-named Clinic for Special Children in Lancaster County, whose patients include Amish children with autism.
Autism exploded in the 90’s with the addition of the thimerosal containing Hepatitis B and the HIB and the expansion of RhoGAM to pregnant mothers.
Children have been exposed to less thimerosal since 2002 than they were 20 years ago, yet the number of diagnoses has not declined. What does that tell us about the association between thimerosal and autism?
Saturday, October 27, 2007
I'm interested in learning more about services for adults with autism, specifically in the mid-Missouri region. Here are several specific questions I'm interested in:
Are there strong support groups for adults with autism?
Are the schools guiding students into the adult world?
What sort of jobs are out there for adults with autism etc?
I really want to hear from the mid-Missouri viewers on this subject. Thanks!
Friday, October 26, 2007
Thursday, October 25, 2007
Whew! We had an interesting trip. We picked up our photog Andrew in St. Louis. In the process we got turned around in St. Louis, which made us late for Dr. Ayoub. I felt horrible. We have been pretty good about staying on time so far with all this traveling. This was the first time we got lost. It happens and Dr. Ayoub was so kind and still let us interview him.
The interview went well. I tried to focus as best as I could but I was worried about us being late. I got through all my questions. It was fine in the end.
We interviewed Ayoub at the hospital. We have had wireless mic issues in hospitals. I think it has to do with radio waves and machines. So we used the lav cable mic. It is frustrating at times. I love t.v. and visually showing something to the viewer, but in order to do that well....means a lot of work.
Dr. Ayoub gave us great insight on money issues. He will be used for the investigative part of the series. To top it all off, Dr. Ayoub also had a cold at time. However, we all pulled it together and had a great interview session.
I think the best part of the interview was when he responds to his critics and tells me why he fights for what he believes and what his research says.
I can't wait to show you the rest.
We went to the McDonagh Medical Center on Monday. Dr. Rudolph was hesitant to do the interview. He was a hard interview to get. He was concerned we were out to put a negative spin on his clinic.
My goal for this series along with any story is to be honest. I think our viewers will see throughout the series everything must be questioned.
I can assure our viewers I asked tough questions and we did cover the criticisms of chelation...but we also discussed the good results Dr. Rudolph says he is seeing.
When we arrived in K.C., Dr. Rudolph gave a tour of his clinic. He showed us the many rooms and machines of alternative treatments. Then we did the interview.
Dr. Rudolph made it very clear to us he is not an autism expert nor are people with autism the majority of his patients. In fact, he has few. However, his clinic has a vast amount of published work. He claims, his clinic probably has the most published work in the world concerning the work they do.
I know we will get reaction from interviewing and showing alternative forms of treatment. However, we can't be above the news. People are using this form of medicine and it should be covered. I know people are very concerned about this being included in our series, but we are covering it fairly and honestly.
I can't wait to share this story with you.