The Strategic Plan–the document which outlines how the HHS agencies are supposed to conduct autism research in the next few years–has been seriously delayed by repeated attempts to insert vaccine language.
The Plan is basically ready to be finalized. Months later than it should be because, well, people (read: Lyn Redwood) keep monopolizing the time for the meetings to discuss vaccines.
Would you like to see autism research move forward? Would you like to see the Combating Autism Act money actually appropriated and spent? Or, would you like to see future meetings continually monopolized by this one question?
If you are like me, you would like to see good research start. I’ve listed some of the initiatives that are stalled below. Good stuff. If you would like those projects to start sooner rather than later, send an email to Dr. Tom Insel, director of the NIMH and chair of the IACC. Let him know that it’s time for the IACC
Here are some points–
1) The Strategic Plan process has been significantly delayed by vaccine-oriented autism organizations
2) The proposed vaccine initiatives have not been checked by science subcommittees. I.e. they were inserted outside of the regular procedure.
3) Combatting Autism Act funded research has been stalled by the political maneuverings of the vaccine-oriented autism organizations.
4) It is time to put the CAA to work.
Here, I’ll make it easy for you: click here
Edit the email however it suits you. Hit send. Let the IACC know that CAA funded autism research should no longer be stalled by people pushing for vaccine research over all else.
Just in case you aren’t annoyed enough, here are some research initiatives that could be starting if the Plan were finalized rather than still in the tedious discussions by those who would rewrite it:
$5M on research for adults, seniors and adolescents:
Conduct at least two clinical trials to test the efficacy and cost-effectiveness of interventions, services and supports to optimize daily functioning for adolescents, adults, or seniors living with ASD by 2012. Estimated cost: $5,000,000 over 5 years.
Study quality of life for adults with ASD:
Launch at least two studies to assess and characterize variation and quality of life in adults living with ASD by 2011. Estimated cost: $1,500,000 over 3 years.
Randomized controlled trials–for both the very young and older kids. Yep, finally the RCT studies for
Conduct five randomized controlled trials of early intervention for infants and toddlers by 2011. Estimated cost: $15,000,000 over 5 years.
Launch three randomized controlled trials of interventions for school-aged and/or adolescents by 2012. Estimated cost: $14,000,000 over 5 years.
Genetic studies, anyone?
Identify genetic risk factors in at least 50% of people with ASD by 2014. Estimated cost: $30,000,000 over 6 years.
Coordinate and implement the inclusion of approximately 20,000 subjects for genome-wide association studies, as well as a sample of 1,200 for sequencing studies to examine more than 50 candidate genes by 2011. Estimated cost: $40,000,000 over 4 years.
And there is a lot more. A lot more including environmental factors, gene-environment interactions, biological markers–all stuff that is supposed to be near and dear to the hearts of the vaccine-orgs. One could understand them stalling the Plan if it was all genetics and adults and other subjects they find uninteresting, but the Plan is chock full of exactly what these orgs have been asking for.
Heck, I don’t see why their membership isn’t up in arms that these projects are being stalled. Just goes to show that the vaccines are really far and away the number one topic. Not surprising, but it is interesting to see them stall their “own” research projects for this one issue.
Left Brain Right Brain 
“Not surprising, but it is interesting to see them stall their “own” research projects for this one issue.”
Why should that be surprising?? Doing the vax/unvax study is by far the most important study that needs to be done and so yes, “stalling” the other research to make sure this is included in the plan should not be a “surprise” to anyone. Even you.
Bottom line: The goal isn’t to *push* the plan through regardless of what’s in it. The goal is to make sure the right research initiatives are included from the get-go and *then* to push it through.
With all of the millions spent on the vaccination issue already, especially with the two recent studies, it’s time to move on. It’s not the vaccines. To keep going over and over one issue that was settled is a waste of time and my tax dollars. Political shenanigans need to be overridden and the program started.
Kelli Ann Davis said “Doing the vax/unvax study is by far the most important study that needs to be done”
Bzzzzzzzzzzzzzt… WRONG!!!
Too much has been wasted on this idiotic blame game. And now funds are limited to get my 20 year old son to transition from school to gainful employment. Disability services are getting a severe hit, and you want to continue on throwing money after a stupid guess. You have no idea what you are talking about.
One can olso use this web form to submit feedback to the IACC.
One can edit the message to one’s taste, but the default message is:
Yep, I’m angry that needed research is being delayed.
I’m also confused – you keep referring to “vaccine-orgs”, and every time, my mind stumbles, because to me, they should be called “anti-vaccine orgs”. Is it just me?
Awhile ago, I was thinking, “What’s wrong with these people, these anti-vaxers seem so rabid and irrational. So I looked it up on wiki:
http://en.wikipedia.org
/wiki/Vaccine_controversy
Hmmm, pretty flimsy religions grounds. Then there’s anti-government libertarianism. What else is there? To me, my top priority would be Not catching diseases from other people. Yuck !!!
Not just you. I was trying to point out that they are interested in only one subject–vaccine causation. I can’t call them “autism orgs” since they don’t seem to have autism causes as part of their agenda.
Ms. Davis,
nice of you to stop by. I see that the idea of stalling research is not at all bothersome to you.
The Strategic Plan could have been finalized last summer if the IACC had been acting efficiently. That is to say, if meetings weren’t monopolized by people attempting to rewrite the Plan. The research could have already started.
Here’s a more important point: the money still has to be appropriated by congress. Do you think we have a better chance at full appropriation now or, say, last summer, before the financial meltdown?
Put simply: the stalling tactics may have cost the autism communities millions of dollars in research funding.
By the way, Ms. Davis,
I’ve read enough comments on the Age of Autism blog, and spoken with enough parents to realize that many who would push heavily for the environmental research in the Plan do not agree with the idea of vaccine causation and would likely be rather unhappy with your stance that this is the number one research project.
But, I guess it is OK to ignore their beliefs, even though they are part of the “Generation Rescue Family”?
Kelli Ann Davis said “Doing the vax/unvax study” …
… is just another delaying tactic. Because we all know that no matter what the results are the Mercury Militia and the other anti-vax loons will not accept the outcome if vaccines are not shown to be the bad guy.
Come ON! “SafeMinds” bunch were even involved in the design on a study, yet when the results did not go their liking, they decided it was “bad”:
http://scienceblogs.com/insolence/2008/01/sallie_bernard_responds_to_the_new_engla.php
Ms. Davis, even if they do the so-called important study on your terms, if the data does not go the way you want it, you will still not accept the conclusions.
So why bother.
You have made up your mind on just a stupid hypothesis (published in “Medical Hypothesis” no less!), so why should public funds be spent on the whims of the hopelessly clueless?
I Have had Autism Is Natural and is a typical progression for the well bening of earths
master of intellegents.Why wipe it out at a early age You should See some of the things I can do with having Aspegers.you gies are just realist mind independent view and the skeptical all it is constructed view.
I was wondering if you ever considered a middle ground..With respecting Some interpretations idealism seem That aspergers is A bad thing to have .we do think in a difrent way not like others in fact we are thinking in a higher reality thats all.My qustons with some of where funding Goes In to the FDA drugs Why is this
why give Psychiatric medications to Asperges when it”s not a Psychiatric Disorder its olny a neotipical disorder simpuly a nerotypical disorder! A A I need to bring everone up to speed on this .G wizzz .Rescue Familys you mean teach the about toilet training just paint the walls a diffren colour for you Autistic child. God some peopel are so not up with the play,Gezzz
“Bottom line: The goal isn’t to push the plan through regardless of what’s in it. The goal is to make sure the right research initiatives are included from the get-go and then to push it through.”
Okay, let’s review this.
You have a commitee of federal members, many (if not all) of whom have top level qualifications and who occupy director or consultant level positions in major organisations.
No mention of the initiative under contention has been made by them. If there has been , you will provide a reference.
You also have some public members, who – whilst highly qualified (with the exception of Grossman, who has no stated qualifications at all)- are (with maybe the exception of Janvier and McKee) lacking in qualifications and exertise in comparison to the federal members.
One of these members, made the changes without undergoing due process (which could be interpreted as unprofessional behaviour in a fitness-to-practice hearing, assuming she is still under licence). Said change was then removed.
Now, as a member of the public – why should I accept the opinion of what’s ‘the right’ initiatives from a person who is clearly heavily politicised, rather than trusting the consensus opinion of her fellow public members and the federal members? This consensus, btw, is one she has had full input in, yet she had to resort to some off the table measures to even get a mention in.
I think I know which side of ‘right initiatives’ any unbiased observer would come down on.
This is a clear attempt to inprint one interpretation of ‘right’ regardless of the opinion of anyone else, or what the consequences are.
Thoughts Regarding Autism Spectrum Neurodevelopmental Disorders
Of these rare neurological dysfunctions, Autism is the most common of these passive developmental disorders. Autism is a disability caused by a brain development disorder of unknown cause, yet some suspect the cause is some sort of neurological dysfunction- possibly with a genetic predisposition.
Usually, symptoms of the disease present themselves before the toddler reaches the age of three. Before Autism was more understood, others inaccurately labeled autistics as childhood schizophrenia or as having a psychosis or mental retardation.
Out of over two dozen diagnostic criteria utilized for these disorders, eight must be present to be considered autistic, according to the DSM. As with all passive developmental disorders, the person expresses language, social, and behavioral difficulties.
Treatment includes what are called psychotropic medications that delay the progression of the disorder, as well as relieve some of the symptoms of one who is autistic. Behavioral therapy is common as a treatment regimen as well. Boys get Autism much more than girls.
Then there is the controversy between many who claim that thimerosal- a preservative containing mercury, which is a neurotoxin that was used in vaccines until 2001, was the catalyst for autism in children.
Over 5000 lawsuits have been filed because of this belief, and some have been successful for the plaintiff. Yet most agree the correlation between thimersal and autism is void of scientific merit. Furthermore, the cases of autism have not decreased since the preservative was discontinued in 2001.
Aside from Autism, the other four passive developmental disorders are known as autism spectrum disorders.
Asperger’s Syndrome is more common than autism, and the symptoms are milder, as there is minimal delay in language abilities, if at all. What is expressed with Asperger’s syndrome is mild autistic symptoms. In time, the patient may express atypical personality disorders, though.
While intelligence is within normal limits with the Asperger’s patient, social interactions and abilities preset difficulty for such a patient. As with Autism, medications and behavioral therapy are treatment regimens with one with this syndrome
Rett’s Syndrome or disorder presents with not only atypical behavior, but also suffers from restricted physical growth and movement. There is cognitive and social impairment as well. The disorder affects mostly girls, and the cause is due to a gene mutation.
Childhood Disintegrative disorder is rare, and is 10 times less common than autism. The disorder has a late onset with mild autistic symptoms. The disorder affects mostly boys, and regression is sudden and possible with this disorder. Skills lost with this disorder may be language, social, self-care, as well as play or motor skills. Decreased function or impairment with this disorder may include social skills and behavioral flaws. Central Nervous System pathology is a suspected cause of this disorder.
Finally, there are passive development disorders that are not otherwise specified. This may include atypical autism, for example. Yet as with the rest of types of these disorders, the symptoms vary in their frequency and intensity, as well as the range of abilities of these developmental disorders vary widely as well.
Medicinal treatment along with cognitive and behavioral therapy prove to be most beneficial for all the different types of Passive Development Disorders that unfortunately exist for unknown reasons, yet further research should be done to discover both the etiologies as well as more effective treatment for the Autism Spectrum,
Dan Abshear
Ignore the drive by book report by the idiot, Dan Abshere, who has been told multiple times that PDD does NOT stand for “Passive Development Disorders”.
Why does he keep posting that exact same crappy book report? Is this a once a week thing he’s promised himself he would do to make himself feel better?
Gosh, I am so confused–I just want help for our kids. I am not one to post a lengthy conversation but I do read all post and appreciate them all.
I do a lot of reseach because I do get confused but the site that helps me the most is http://kpentersee.com/whatcausesautism.
Kay, I clicked on your link and followed it to a website which presented me the logos of TACA, Generation Rescue and other such silly groups. I suggest you spend some time and read this blog and the others on the Autism Hub for better information.
i smell a concern-troll…
Rember Dan pathology is veary normal!its olny a phyco thing when its a yoused in crime.Most raceing car drivers are pathogic !!.Some say thay are crazy to drive at speeds of 200+kmh
Aspergers peopel like me have no place to go to in the mentel health system.Peopel Combating Autism are realy the Parents .Most are in real love to get there child to fit in with socail interaction Thats a (Warning)right here! . The prolbem is still Is the word syndrome !.!
People include the word down syndrome or dissablity under mentel health on some of the paper work socail thing with mothers and there lack of understanding socail obsessive range with ther chrilden year knowlage out side professional and some times above science it self.peopel often don’t do things unless it has been recearched!this probably intrests me yes I say it dose!. The autism has to be rescarched to make it sleek looking for extra funding like with or some other topics like crappy book reports i like dans reports .I Will inclding thats my way of handling stress and socail impeairments with not knowing to limit with structor of consavation..memory is more intact than other ways
And had to conect have another things to do with ”Commencement”With understanding how to youse my superconsiness I will stop here I have ben know to full peopels Blogs.
Thx for information.