Congressional Hearing on Autism

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tissues

Mon, Mar 18 2013, 10:09 am

http://www.youtube.com/watch?v=6zGqUfvFDI4

Warning: It's very long. But it IS very interesting. It is a hearing that took place in Congress in November of 2012 about the actions (or rather lack of enough action) that the US government has taken to research diagnosis, causes, and treatment of ASD.

Last edited by tissues on Mon, Mar 18 2013, 6:21 pm; edited 1 time in total

Mama Bear

Mon, Mar 18 2013, 10:22 am

and.... have we seen any results???
There still isn't a single good public school in NY geared for the low functioning autistic kids. The BOE is still giving these students such a hard time with getting appropriate education.
Albany is reducing respite hours. They're refusing to open more group homes. parents of low functioning, hyper, aggressive autistic kids are at their wits ends with nowhere to place their kids.
it's a major disaster.
FTR - autism cannot be cured. At best, we can try to raise the kids' level of functioning. But even with the best therapy in the world many kids will never be verbal, toilet trained, or independent. And they are not getting enough help. It's terrible.

(I'm writing this in a very black mood; almost all of my help have deserted me in these crucial few days before Pesach and I have no idea how pesach will happen in this house. And my son has been biting caregivers and kids left and right the past few days. I'm also dealing with extreme stress regarding where to send him to school next year. The autism community is still very much oif tzuris.)

tissues

Mon, Mar 18 2013, 12:17 pm

You are so right. A large part of the hearing was taking all the gov. agencies and committees to task for their lack of research. Part of the problem is how little funding is being given (as compared to the arts, the military, etc.) I especially was interested in the glaring lack of solid information regarding vaccines and autism. Autism rates are rising higher and higher (it's now 1 in 88) and more and more vaccines are being administered. Many parents are relating anecdotal evidence. And yet, the CDC has nothing to show for itself. The money given is being used to isolate genetic causes for autism Rolling Eyes

instead of realizing that genetics alone can in no way be responsible for the dramatic increase in ASD. (It may play a small part, but there must be some other factors having a more direct effect on the numbers.)

wifenmother

Mon, Mar 18 2013, 12:33 pm

It's scary! Based on statistics one in every few children will be 'on the Spectrum' in just a couple of years! And although there are many links to vaccines, the pharmaceutical companies are ahead of the game by paying big $ so that the CDC remains blind to everything they don't want them to see. (Many of these new vaccines are ineffective - they're considering a booster for the chicken pox vaccine now, which was unnecessary in the first place!)

Mama Bear

Mon, Mar 18 2013, 1:05 pm

Okay, now youre off on a tangent in the wrong direction; I personally absolutely do not think autism is vaccine related. My son started talking after his MMR vaccine and continued for another six months. My other son wasnt got the same vaccines and is perfectly fine. And I will still IYH continue vaccinating any future children; I wouldn't risk them getting measles, whooping cough, or meningitis. But if there would be a real, proven connection, and a real, proven cure, I'd be on the bandwagon. So far there isn't any real, scientific proof.

tissues

Mon, Mar 18 2013, 1:55 pm

Mama Bear, did you listen to it? One of the major ta'anos is why there isn't any scientific proof. If you don't look for something you don't find it. Why hasn't the CDC looked into that properly? One of the major points brought up in this hearing. Listen to it.

wifenmother

Mon, Mar 18 2013, 2:07 pm

Mama Bear just because you don't see the link, does not mean it does not exist. I agree with Tissues: there is no evidence because the CDC isn't interested in looking into it.

shlomitsmum

Mon, Mar 18 2013, 3:09 pm

wifenmother wrote:

My DD"s reaction to the MMR was documented here by health canada (my other toddler is only done up to 3 months) her doses will not be lumped and will be delayed . I am not oposed to vaccines but opose this one size fits all approach to doses ( I asked my doc about individual vacs and was told" not available here") .

Pre MMR I had a engaged, verbal , fully potty trained toddler who after her MMR had a high fever for over a week , who developed swollen legs that could not be bent and goose egg size lumps on the injecction site (I thought it was a blood borne infection , a week of hell) .

After her fever was gone so was her speech , tolerance for clothing and interest in people. She changed overnight Crying

As a ECE my alarm bells started ringing loud .....I tried on my own to work ith her . but could not get her to care beyond her personal interests : books ,DVD's ,blocks lined over and over .
At 3 we got the diagnosis: Autism
She is now at Zareinu here in toronto and I have seen miracles , she gradually has began to , talk wear clothes she even has 2 kids she calls "fends" etc
As her verbal skills progress so do the tantrums become less frequent and violent , OT is making her more coordinated and tolerant of higene (still not potty trained yet at almost 4) but she now lets me brush her teeth without vomiting . Ipad use had us discover that she actually unerstands the words she is "reading" at 3 and can memorize car routes and do complex puzzels in secconds.

Thanks to HKBH ,therapy, and dietary changes she is moving towards a much more high functioning spectrum than expected B"H but I can relate to the devatation and frustration of trying to find one's way to get the best treatments on a shoe stringt budget.

Autism has also been a hidden blessing for us in terms of self discovery what DH thought were personal quirks and sensitivities as he turned out to be on the spectrum too !
( So the genetic componet is very valid IMO) Knowing has helped me understand him better , find more effective ways of communication and not taking his sometimes blunt or aloof demeanor personally.

B'H they will figure out a way to help all kids on the spectrum and not just waste resources talking theory.

Mamabear (((HUGS))))...you are amazing and strong ! I was a wreck in the begining (I had to cal bikkur cholim for help as they offer respite cleaning help ,do you have them in willy?)

it was as if the rug was pulled from under me and I just could not focus for about a week , it was almost like mourning. After that week ... to cope I made what felt millions of calls eventually stummbling on something that has worked so far. B'H

tissues

Mon, Mar 18 2013, 4:08 pm

shlomitsmom and Mama Bear, I feel terrible that you had to go through all that. I can't even begin to imagine what a shock it was all for you, getting to know a whole new world of ASD.

Your two stories are not isolated incidents. They may be "exceptions" to the "rule", but they are not so few and far between. Unfortunately, many mothers have seen their regularly developing baby/toddler turn into someone they don't recognize. Most mothers, as you two have, can pinpoint the turning point was after a well-check visit where the child received vaccinations. (I won't discuss other adverse reactions that occur after vaccines.)
That's called a "clue".

As long as we hold on to the belief that vaccines are safe and effective, we will not examine the possible connection. It's about time that the government listens to the voices of parents who are seeing the connection without have studied it scientifically. This is what a large portion of the hearing was about: bringing people's concerns to our lawmakers and holding them accountable for what is NOT being done. Studies to see the difference between vaccinated and unvaccinated, studies to extensively check out the effects of mercury in vaccines, more funding for these studies, more funding for children and their parents who are already suffering, easier access to compensation from the vaccine injury compensatin fund.

What the results of this hearing will be, we shall see.

Mama Bear

Mon, Mar 18 2013, 5:00 pm

Tissues... reread my post... Mendy's loss of skills had NOTHING TO DO WITH the MMR shot... He got it at 13 months, his speech began to develop AFTERWARDS and stopped/regressed 5-6 months later. Shlomitmom's daughter did have a reaction to the vaccine and her speech stopped right away. so in my case I do not see any correlation.

tissues

Mon, Mar 18 2013, 6:19 pm

Do we know the long-term and cumulative effects of the toxins found in vaccines? Don't you think the CDC should be checking it out scientifically with proper studies?

Don't you think it's telling that as childhood vaccine requirements increase - we just keep adding more and more - so does autism? Listen to the hearing; the numbers are alarming!

Besides, they have obviously concluded that thimerosal is dangerous as it has been removed from single-vial vaccines. Why is it then still found in the multiple-dose vaccines? Most vaccines children receive are multiple-dose. Why is mercury being banned from thermometers and carbon emissions and people are told to avoid lots of tuna, but mercury continues to be injected into children?

Cookies n Cream

Mon, Mar 18 2013, 6:50 pm

tissues wrote:

OT, but not anymore.
You can eat as much tuna as you'd like. The mercury level in tuna has drastically decreased in the past few years.

MaBelleVie

Mon, Mar 18 2013, 7:38 pm

Tissues, did you start this thread to discuss autism or to promote your anti vax agenda? Many, many, many factors can be contributing to the jump in numbers. The civilized world made a tremendous amount of progress (or "progress") in the last half century, and how are we to know what effect various changes made on humans?

Shlomitsmum, I'm so sorry for your experience. You seem like an incredibly strong woman based on your description.

flowerpower

Mon, Mar 18 2013, 8:50 pm

I am sorry but many kids that did not take the mmr shot or other shots around tha age still lost speech etc at that age. The reason people think its related is because it comes out at around age one and that is when most kids get their mmr shot. There may be cases that kids have allergic reactions to shots because they have alleries but that is something else.

Tova

Mon, Mar 18 2013, 8:52 pm

I'm also a bit uncomfortable with your posts, tissues. It is one thing to talk generally about the issues, but quite another (and inappropriate IMHO) to call out a real life poster as to why her child has special needs.

tissues

Mon, Mar 18 2013, 9:08 pm

Try to listen to the link before commenting.

MBV, the hearing was about autism and its many many factors. However, you know I am anti-vaccines. Smile

That's the part that interested me.

Flowerpower, no one is saying that MMR causes autism. What people at this hearing are saying is that they want more accountability regarding mercury in vaccines, regarding clustering so many at one doctor's visit, etc. (Mama Bear and shlomitsmum mentioned MMR specifically.)

Tova, I did not call on any specific poster. Some posters volunteered personal information. My (unanswerable) questions are directed to the general public.

Mama Bear

Mon, Mar 18 2013, 9:14 pm

And I repeat, tissues, that mendy got his mmr vaccine MONTHS before he lost his skills. I'd rather link it to the elevated lead in his blood that wouldn't go down. Or to silent seizures. or simply bc his brain is wired this way. Or who knows what. There's no link here to the vaccines, which were months earlier.

flowerpower

Mon, Mar 18 2013, 9:15 pm

They removed the mercury from the vaccines a few years ago. There are a lot of questions as to what causes autism- is it genetic, enviormental, diet.......... Until there is real results we will have to keep researching.

MaBelleVie

Mon, Mar 18 2013, 9:20 pm

Well, the good news is that it is completely legal for any parent who so wishes to NOT cluster vaccines. More good news is that the FDA has drastically reduced and eliminated thimerosal from vaccines. So there certainly is a focus on improving the safety of vaccines. It continues to be a process, but it's not like everyone is shoving the possibility of harmful side effects completely under the table.

tissues

Mon, Mar 18 2013, 9:28 pm

flowerpower wrote:

You clearly didn't listen nor read my posts. I don't mind if you post, but it's annoying to keep repeating myself. UNDER OATH, Boyle from the CDC said that multiple-dose vaccines still contain mercury. The Hamaspik Gazette just had an article about the banning of mercury in everything except multiple-dose vaccines.

Yes, there are a lot of factors that need to be researched regarding the causes of autism. They're trying! They're researching the genetic aspect. The question is why vaccines are considered untouchable in this research. It seems like it's a given that vaccines are safe, and now let's just go ahead and find what else it could be.

Personally, I believe that autism is caused by a combination of various factors that occur all at once. Vaccines are probably a big one - for a few different reasons (mercury, giving many at once, etc.) The numbers of ASD have gone up tremendously in the last few years. Do you think the diet, food has changed that dramatically to account for this jump? Have people's genes really changed that much?

Rather, it's a combination of pollution, toxins in the air, food, injected straight into baby's bloodstream - multiple times, often injected into the mother before birth (DPT has only recently become a must for pregnant women)- - - all this coming together in a body which may have a predisposition to autism...

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