Neuroskeptic said-

"Next time you want to post about science ask me to fact-check it in advance and you might not look so silly."

Good golly..that's exactly what I should do. Rely on the advice of a skeptico blogger who is rude and grandiose.

You miss the point that I am talking mercury, and "mysterious", "spontaneous" deletions.

A little more science and a little less Freud would be nice, too:

from your Autism category:

"But even if we now see autism as a neurodevelopmental disorder, there is something attractive about Bettelheim's book: it seems to be a serious attempt to understand the autistic experience "from the inside", and to appreciate the autistic child as a person rather than a disease. This is something that we rarely see nowadays."

Neuroskeptic

You are sure smart!
It puts me to shame how little I know!

So these deletions just happen because its just natural????

So what is the rate of these deletions - I mean dumb me - is it - it - like some regular rate increase, or a steady rate that never changes, or how about a child that regresses - it had the deletions all along it just took it untill age of two to get Kawasaki's or something???

Maybe God invented a destruction button and when he gets tired of us he just pushes the button and the rate of deletions increase untill the human brain as it is "now" that has been around for 100,000 years returns to still human but not like us - like the pre-human brian like what was around about a million years before the human brain of today???

Sure glad there is smart people fact checking these articles so dumb readers like me won't get snookereddd

Please don't get me going on Autism Speaks! I can go for hours!!!

One of the many who pretty much ignores anyone with Asperger's. All that money and nothing for us. Nothing for the families who deal with severe autism either. How about you take half of the money you give your scientists to sit around with a thumb up thier (I won't go there...) and actually use it to create programs that will HELP those with autism cope with the world!!

Then, maybe, I might have a more favorable opinion. While a cure is something desired, there needs to be something for those of us who already have the disability. Families also NEED HELP!!!!!! Many are at thier wits end!!

Hey Autism Speaks, how about with your millions you, oh I don't know, DO SOMETHING USEFUL!!!

Oh my, what a concept!!

Dadvocate-

Sure does not seem that your idea of advocating shares my vision or "passion..of AoA."

Your comment -"ASF and those you view to be on the other side of your agenda are really, really skilled at cutting opponents off at the knees in front of policy makers."

Interesting that you brought them up and also interesting that you didn't include yourself here- "Your" agenda?
ie - "we view to be on the other side of our agenda...

but then again I think we knew that.

To Margaret Watson, Could you check out Russel Silver syndrome for Emily. This syndrome includes failure to thrive and problems in the esophageal area. With this syndrome, Emily would have a very short height but normal head size. Its easy to treat- you just have to give growth hormone. I believe that this syndrome may have been increasing along with autism. I have seen two cases in the last 3 years of my school. I have never , ever seen any child as short as these two kids (Age two and the height of a nine month old) There is no genetic or other test for Russell- Silver and remember- not every child will have the most exaggerated symptoms of R-S.
And if it is R-S, dont believe it when they tell you it is genetic- Only a small. percentage of RS kids have a particular genetic sign , and that still is not proof that it is definitely genetic in even those kids.Best wishes and please keep us posted about dear Emily. Every child is precious

When AS came to my town, I made sure that I informed all the parents about them.

Sometimes, I venture over to their forum, and it creeps me out that they pay shills to harass parents on the forum. It's just such a creepy thing to do, but obvious.

Teresa - My final thoughts on this issue are that unless AofA directs its obvious passion into effective advocacy, rather than cartoonish criticism of other advocacy groups, the AofA community risks being continually characterised and dismissed out of hand as a bunch of unserious, conspiracy driven tin foil hats. Whatever your personal views, that platform won't get you what you want. ASF and those you view to be on the other side of your agenda are really, really skilled at cutting opponents off at the knees in front of policy makers. To quote the late expert on politics, Hunter S. Thompson, "When the going gets weird, the weird turn pro." AofA folks would do well to heed his advice.

I won't respond to Willie's insult, other than stating to Teresa that you be right, I'm a bit antiquated, but it's because I've been advocating for a long, long time and learned what works and what results in nada and pat on the head rather than policy change. I think Mark, Dan, and Kim "get it", but much of the AofA community seems to be burdened by a troubling certainty on issues which may not apply to all in our broad community. That's an Achilles heel and the exact flip side of the argument many here fight so vehemently.

Consider that, to a degree, everyone may be correct in their arguments when they consider a subset of the affected population, rather than treating the whole as a monolithic disorder.

Anyhow, my focus for a while now has been firmly on adult issues rather than causation and early intervention. I still strongly support research into immune and auto immune issues, including vaccines, and am deeply troubled by the current public health construct that tosses out checks and balances in favor of a structure that is all too vulnerable to commercial interests and links vaccine promotion and safety.

So have at it but keep in mind that effective advocacy isn't moaning and groaning and criticising others for what they do. It's putting together an effective organization to advocate for what YOU want to do. Much appreciation, Teresa, for the civility.

Ditto what WILLIE said.

Well I read non profit tax returns. I want to know where my donations go and my volunteer hours. A great resource is www.guidestar.org. Especially where I tell family and friends to help in honor of my son working so hard & living with autism. He's my hero. 
The problem I have with Autism Speaks is folks raise money for them thinking they are helping families. Autism Speaks is raising funds for research not much for families today. Fact- see their tax return. 
And on topic Autism Speaks needs to start to fund regressive autism which now seems to make up the largest % of kids. 
The genetic hunt has lost focus and delayed progress. 
While you can discuss percentages - which AS %'s are below BBB standards- they are research focused. 
We need both - Help for families AND research. The question is for donors - which do you support? And please do your research so time and money follow your intentions.
Whether we like it or not autism is a business. But the public can help shape non profits by getting involved and help engage your resources. You are stronger than you think - only when you act for positive change. 

VACCINES CAUSE AUTISM
"My son has exhibited severe issues with proprioception, as have many in our community. Getting out of a car. Riding an escalator. Movement, balance, place in space...all affected (though, like many, floating nearly weightless in a pool of water is magic and a comfort to him). These are real issues that this type of study may aid as some kind of step that others may build on in the future"
This comment is so nonsensical that it defies an intelligent response

Ladies and Gentleman

Any group of people, bloggers, researchers, autism groups, federal or state support groups, physicians, politicians, legislators, alleged parents or real parents that refuse to acknowledge the central and precipitating role of the unnecessary vaccines, all of them, (yes you read that correctly all of them, they are all bullshit every last one them even if you do not know it or simply to delusional to accept it) in autism has to be regarded as a hostile diametrically opposed faction with ulterior and nefarious motives. These people cannot be trusted they know the truth that VACCINES CAUSE AUTISM and they seek to conceal this very truth by any means.
Do not even bother to talk to these people they are simply measuring your knowledge trying to gauge how much longer they can keep up this manipulative masquerade of caring about children or the families that endure with this man made plague that will most likely send each and every one of them to hell. Many of these people are simply paid off like cheap harlequins to come and raise false flags of focus and interest like the person above.
Even the most novice of parents in autism want to relieve the disease which will obviously resolve the symptoms not observe and accommodate the symptoms as this alleged parent is suggesting. Is it possible he is that uninformed? Yes but doubtful.
Any group not proposing, preparing or executing vaccine research is just f----ng around and their position should be ignored as complete and utter nonsense

VACCINES CAUSE AUTISM

Dadvocate-

Interesting. So you say that you don't believe a parent sharing:

"Autism Speaks is sucking the funds out of every state in this nation. Funds that use to go to smaller Autism groups within each state that actually aided and helped families. Many have folded in my state as donors feel that giving to AS is giving to "autism" and they have done their part."

And your comment regarding NAAR and CAN seems a bit antiquated. When they formed, autism rates were just starting to accelerate but it was 1999, maybe earlier. There was no money as the numbers were not there yet (autism diagnoses) in children. Then this comment, " How many studies does ASA or ARI fund?" Again, a tone of anger, disdain? They do not have the money like AS which was the point of my post. People keep giving to AS walks,fundraisers etc thinking they are helping yet these studies are not meaningful to many families.

Katie Wright is a wonderful mother and advocate, since you brought her up. I think she has made it clear that research at AS is not up to par. Your fixation on cartoon characters as well as your earlier confusion of "mocking" by me gives a sense that somehow you are personally affected by my post that was aimed at an organization that many take issue with. Just needed to point that out.

Great illustration of Fred Flintstone sleeping in the hammock---That's Autism Speaks alright---Sleeping on the Job.

Just posting a previous post I wrote regarding Autism Speaks because I am too pooped out to write anything new, and there really isn't anything new going on with Autism Speaks because it's always the same game of beating around the bush in their so called "research"....and oh yes, their other primary function is to support the vaccine schedule at all costs...

Excuse me, but what's up with Autism Speaks? There is not one mention of the word "Vaccines". If you will notice from the following information from the Autism Speaks website, anything and everything BUT vaccines are being researched with their massive funding budget of 33 million for 2008, of which only 2% is going towards vaccines.

Autism Speaks is right in there with the rest of the mainstream medical denial of the reality of Vaccines being the primary single cause of autism. It seems apparent to me that Autism Speaks is involved in the vaccines cover up propaganda. Autism Speaks does NOT speak for our family or for my grandson.

http://www.autismspeaks.org/science/science_news/geri_dawson_vaccines_autism_interview.php

If questions remain, what do you tell parents when they ask whether they should get their child vaccinated?

Let me be clear: Autism Speaks fully supports childhood immunization and strongly encourages parents to vaccinate their children. Our vaccine program is one of our nation's most effective programs for preventing serious infectious diseases. If parents have concerns about the safety of vaccines, we encourage them to find a pediatrician with whom they can ask their questions and establish a trusting relationship. Working with their pediatrician, we trust that parents can make thoughtful decisions about their child's health.

How much of Autism Speaks' research budget is devoted to studying vaccines?

The amount of funding we are devoting to research that is relevant to vaccines is only a small percentage of our overall research budget, about 2%. The bulk of our $33 million in research funding in 2008 is focused on identification of a wide range of genetic and other environmental risk factors, biological mechanisms, diagnosis and early detection, and discovery of effective treatments. We also invest a substantial amount of funds in developing resources for scientific discovery, such as the Autism Genetic Resource Exchange (AGRE), the largest private genetic data base in the world, and the Autism Tissue Program, a brain tissue donation program dedicated to autism research, among others.

Hundreds of scientists are currently using these resources to advance our knowledge about the causes and underlying biology of autism spectrum disorders. [BIG FAT LIE]

It is not just public funds we have a right to scream about. The reason.....Autism Speaks is sucking the funds out of every state in this nation. Funds that use to go to smaller Autism groups within each state that actually aided and helped families. Many have folded in my state as donors feel that giving to AS is giving to "autism" and they have done their part.
Meanwhile AS has never helped a single family cope, function, finance help and therapies as all the money is suctioned off for these ignorant attempt to look like they are doing something.
Along with our own money from our own states being used against us in securing the rights of our children to medical care and treatments through insurance. AS will sign on to any bill written by Insurance companies, again claiming they "helped". Well they helped someone, but not families dealing with Autism.
The money AS takes from our states is public money, but the public is being defrauded and convinced they are somhow helping with "Autism". Instead they are robbing the children in their own state of any meaningful assistance that local or state groups used to provide.

Dadvocate:
If your child is severe the federal government will support him (a little)!
Medicaid will be given if your child is servere. Oh, never mind that no doctor will take Medicaid!!! I know because I have asked around about it for the last four years while waiting for a ruling from the SSI office.

"Nurse, does this docotor's office take medicaid?"

"Well, only if they are an establishied patient here." Comes a hestitant answer.

"Well, what happens if the doctor in your group leaves?" I asked.

"Well, the nurse stutters,"If your son is the established patient then the doctor leaves - well - that means he is no longer established."

UK medical center though has to take all Medicaid patients because the state of Kentucky gives them money. BUT all of these are specialists, and it takes a regular doc to give a referrial. Ha Hay, one of them catch 22 moments!

They also will give beside Medicaid - 5,000 dollars a year for expenses. THat is right 5,000 dollars. Hmmm after medicine paid out of pocket that leaves 3,000 dollars. What to buy ----- ??? so many choices; food, clothing, but mostly extra medical help that medicaid would not pay for, or it will go to doctors that take cash instead???

The federal government has no intention of giving us justice, or help, or satisfication. Oh and I want satisfication. I want to hear the head of the CDC stand in front of the cameras and say:

We were wrong. Vaccine does cause autism. This is what happened - and explain.

Then I want to hear a news reporter say. "Hay back in the 80's when this was first happening why didn't you get your arse in gear and do your job instead of saying there was not a chance?"

That is not going to happen. I did not even get satisfacation or justice from SSI.

The only smigett of satisfacation I got out of trying to get SSI for my son was: The federal government had to pay for two psychs. The federal government had to pay for the judge's time - twice, and for someone to read my son's records - three times.

I got to hear about the last psych discussing this with the judge - and he said that all the trouble was brought about by a drug. To cowardly to say vaccine- but now he said just drug induced.

I also got to hear from our lawyer that the psych also said that my son had 23 years of assessments done on him but no treatmenst and he needed treatments. Now what kind of treatment would that be???

Nope, left hanging because it was once again the refrigerator Mom's (Me) heres fault that all we go were assessments and no treatment. Yep, that is me!

Only treatment I guess comes from a bonifide, sure enough, degree holding, college educated, liscense holding, allowed to sell you snake oil medicine psychologist.

Yeap, my son needs this kind of treatment. Did the psych say where we could get this treatment and in the mean time who is suppose to help support a 24 year old that cannot support himself --- oh, yes his parents.

You can not defaud this system - I promise you!!!!The vaccine courts are rigged and also so is the SSI program. It is for those really, really bad off (I am glad for that help to them), but not a dime to those that might could do a lot with just a little support.

What the scientists funded by Autism Speaks and the members of the group itself are failing to understand is a very BASIC biological principle. They are confusing "genotype" with "phenotype".

The genotype is the raw genetic code, what proteins and enzymes the DNA of our nuclei are coded to make. The epigenetics of each cell (and yes, this is different from cell to cell) are what genes are turned on and off in that cell - you don't want your liver cells and your brain cells to code for exactly the same proteins and enzymes, or there would be no difference between the two organs in function. What this results in is the phenotype - the gene expression, which IS affected greatly by the environment.

For a lovely example, look up a breed of cow called the Belgian Blue. It was bred over generations (for reasons best known and understood by the breeders of cows) to have an extraordinary set of musculature, fully comparable to Arnold Schwarzenneger (sp) in his prime. Do we think that Arnold had a similar genetic gift to a cow that is the result of generations of selective breeding? Probably not (the idea boggles the mind, the Nazi eugenics programs would have had to begun in the Dark Ages for that to be possible on a human generational time scale).

People who are body builders end up looking like the cow in musculature, not because they have genes for the same thing, but BECAUSE THEY MODIFIED THEIR ENVIRONMENTS. They eat specific foods to encourage muscle growth, take growth factors, hormones, anabolic steroids, and etc., then WORK OUT to make sure that all these things are expressed in their ultimate possible fashion. The end result is a person with extraordinary musculature, but with the same genes as their twin, couch potato brother who has difficulty his six-pack of beer.

Genes for autism? Sure, just like there are genes for being great weight-lifters. There probably are a few, but they're the exceptions to the rule. Remember, just 2 decades ago, most people currently diagnosed with Fragile X were diagnosed based on their phenotypic appearance as being autistic. Now they have a medical diagnosis.

Yet, even as this and other populations are REMOVED from the umbrella of autism under the Diagnostic and Statistical Manual for Psychiatric Disorders because of their medical diagnosis, the rate of autism has increased. Hmmm.

Great post, Teresa.

Jen - “Losers over at Autism Speaks are beating on a dead drum.” I agree.

"This is environmental damage affecting expression of genes, which does not involve mutations of the genes." - Bob (from a recent AoA thread)

Darwin, himself, could not have anticipated that his theory of evolution would completely sputter-out and be replaced by transgenerational intoxication by pharma's chemicals and biologicals. This gives the phrases "genetic drift", “spontaneous mutations”, and “survival of the fittest” entirely new meaning. The time frame for spontaneous mutation of genes becomes much less relevant when the vaccine schedules regularly transfect us with non-human DNA, retroviruses, reverse transcriptases, chemical and heavy metal toxins. This is entirely a man-made phenomenon. Survival of the fittest has been replaced by social Darwinism. Pharma's genetic engineering endangers us all. If we do not soon stem the rising tide of chemical and biologic intoxicants by pharma, extinction of the species is a distinct possibility.

http://www.theoneclickgroup.co.uk/news.php?start=4020&end=4040&view=yes&id=5367#newspost
http://www.i-sis.org.uk/aquaAdvantageSalmon.php
http://ecocentric.blogs.time.com/2010/07/29/canadas-transsexual-fish/

This hunt for the elusive autism gene reminds me of Monty Python and the Holy Grail.... I can almost hear the sound of those coconuts clapping..hehe..

For those old enough to remember....enjoy!

http://www.youtube.com/watch?v=rzcLQRXW6B0

I don't TV has caused ADD, I think TV has changed to meet the needs of children who can not concentrate or focus. The supply is to meet the demand.

I respectfully disagree with a good deal of your post, Teresa. I'm also not wild about the current balance that tilts the playing field toward genomics. I think that many genomic focused labs are in vogue and professionally persuasive in applying for grants. I'm also not wild about giving more dough to Catherine Lord, but refining adult diagnostic tools might actually be useful going forward to keep people from gaming the system and diverting (stealing) funding from adults with autism who actually need the safety net.

Medicare/medicaid fraud is a real problem and is going to get worse with an aging population. The flip side of greater autism awareness is that criminals will use it as a cover for their theft. Adults with autism need to be at or near the front of the line vis a vis supports. Fraudsters and self diagnostic abusers can prevent people with autism getting necessary supports.

Second, what heck is wrong with in vivo imaging to uncover potential cortical damage in mouse models? Third, let's examine the "blinking lights to examine complex movement variability study" that you mock. My son has exhibited severe issues with proprioception, as have many in our community. Getting out of a car. Riding an escalator. Movement, balance, place in space...all affected (though, like many, floating nearly weightless in a pool of water is magic and a comfort to him). These are real issues that this type of study may aid as some kind of step that others may build on in the future. The research process is generally iterative, not revolutionary. Lots of dead ends. Lots of wrong turns. That's the risk the donor takes when they fund. My advice (if you want it) is to focus on the publicly funded research. That's your and my dough and I want the Centers for Excellence to be just that. My fear is that the $ are simply funding existing labs and some are slapping the word "autism" on their mission to capture funding.

I'd prefer reading a post here about the promising grants applications that haven't been funded but ought to have been. That can be a good thing to debate and discuss.

Katie-please tell your parents that they need a new scientific advisory board! We will all be long gone before they wake up to the fact that there is no such thing as a genetic epidemic! Wake up Autism Speaks before it's too late and we lose a whole generation to an illness and not a genetic problem!

At least Fred and Barney had Wilma and Betty to keep them in line when they did crazy things! Autism Speaks needs a couple of sensible stone-age wives to keep them in line. Not happening!

Combined with mood and neurology altering drugs, Claudine. And the violence explodes and the lack of functioning continues and American swirls further down the toilet so pharma can make money and a handful of people can get grants and a smaller handful can believe they are not brain injured, which, even if they are not, should not prevent them from seeing that many many people are and need better research.