Autism Speaks: The Abortion Industry's Best Friend
Managing Editor's Note: On May 15th of 2007, I asked a similar question (HERE) on Huffington Post. Is a prenatal test for autism what Autism Speaks/NAAR has in mind with its unrelenting search for the genetics behind autism? Is this what it this huge charity is doing with the millions of dollars it has at its disposal (good word choice, yes?) I've made the analogy so many times: "What has knowing the chromosome that causes Down syndrome done for the Down population except cull the crop??"
By J.B. Handley
I'm not here to debate you on the ethics of either abortion or abortion after genetic risks of the fetus become known. Heck, those are two topics that are probably even hotter than debating the causes of autism.
What I am here to ask is what in the hell are organizations like Autism Speaks and individuals like Jim Simons doing continuing to fund genetic research for autism to the tune of hundreds of millions of dollars?
Reviewing the website of the Human Genome Project (HERE) reveals some insights that make the excessive funding even more baffling. Consider the current status of gene therapy:
"The Food and Drug Administration (FDA) has not yet approved any human gene therapy product for sale. Current gene therapy is experimental and has not proven very successful in clinical trials. Little progress has been made since the first gene therapy clinical trial began in 1990. In 1999, gene therapy suffered a major setback with the death of 18-year-old Jesse Gelsinger. Jesse was participating in a gene therapy trial for ornithine transcarboxylase deficiency (OTCD). He died from multiple organ failures 4 days after starting the treatment. His death is believed to have been triggered by a severe immune response to the adenovirus carrier."
So, gene therapy, the potential Holy Grail, has shown little progress in 18 years? Well, certainly scientists must have a basis for believing that "gene discoveries" within the field of autism will help our kids, no?
First, can we all agree on one thing? Can we all agree that if autism actually has any genetic origins those origins are from multiple genes and not a single gene? I sure hope we can. And, if we can agree on that, what does the Human Genome Project say about multiple gene disorders?
"Conditions or disorders that arise from mutations in a single gene are the best candidates for gene therapy. Unfortunately, some the most commonly occurring disorders, such as heart disease, high blood pressure, Alzheimer's disease, arthritis, and diabetes, are caused by the combined effects of variations in many genes. Multigene or multifactorial disorders such as these would be especially difficult to treat effectively using gene therapy."
It's worth repeating, since I think every parent can agree they are interested in effective treatment for their child: "Multigene or multifactorial disorders such as these would be especially difficult to treat effectively using gene therapy."
Is the emphasis and focus on funding genetic research for autism as stupid and unhelpful for our kids as it seems like it is? I sure think so.
Now, consider a different perspective on how genetic knowledge can be used. Consider what has happened to Down's Syndrome, a single gene disorder, since a simple test for the fetus became available. Has it led to better treatment for children with Down's Syndrome?
Consider THIS article about Down's:
"Only weeks before I had read a staggering statistic: 92 percent of unborn children diagnosed with Down syndrome are now aborted… If parents and even doctors so devalue the life of a child with Down, what prospects do they have in their lives and in the judgment of society at large?...Of course, the 92 percent abortion rate pertains only to those women having prenatal testing for disabilities…We have resolved in the courts, for the time being, the issue of abortion. It remains a woman's choice. But that choice is demeaned if communities devalue the life of its disabled."
So, here you go, I'm just going to say it. I predict, in the next 50 years, that the only output from the hundreds of millions of dollars spent on genetic therapy will be a test for pregnant mothers that will lead to some parents aborting their children because of a potential risk of autism.
It's a baffling, colossal waste of time, money, and focus.
J.B. Handley is co-founder of Generation Rescue and Editor at Large for Age of Autism.
Please send your link - your video, news clip or story can make a difference for families living with autism today.
The "Treatment" category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.
We all heard of people on the spectrum doing historical things, and this sounds like some real crap. You think it's bad enough that AS wants prenatal tests? Look at all the great thinkers and inventors that probably were on the spectrum. How could that be a tragedy? More people like that should show up and become mentors to a generation that is so dumbed down by pop culture and suggestive garbage. It seems like they're sweet-talking a control grid by calling ASD children and adults "shells of a shiny future". Something drastic has to be done....
Posted by: Dubslide | May 11, 2011 at 09:22 PM
JB,
While the main goal appears to be to search for genetic markers to - how did Dr. Insel put it? - pre-empt autism, there are other ways this research can serve our community.
For example, genetic biomarkers may be possibly be used against children and families to deny health insurance coverage in the future.
Posted by: Kevin | July 24, 2008 at 09:54 PM
FYI, the little nonprofit I started in Oregon applied for Autism Speaks' community service grant in the fall. It was all online and quite confusing. I asked many many questions and got stuck so many times in technical difficulties. It was very hard to get ahold of them and by the time I was wrapping it up (date of the deadline), I found that while polishing up on the details, I had missed the midnight deadline because their offices were in another time zone. So I did all this work and when I emailed and asked for mercy...no one even responded. I was very disappointed, it was the first time EVER we applied for a grant, and no one even acknowledged me after the deadline.
I know there are rules, but are there any humans working there, you know, to err is human?
Posted by: Elizabeth | July 20, 2008 at 04:11 AM
I have been giving this matter some thought lately. It is very disturbing...disgusting is a better word for it. What have we come to as a society? I was appalled when asked if I wanted an amniosentesis (or however you spell it) and the doctor explained why someone would want one. I would never NEVER EVER EVER kill my child, and murder is what it is.
Posted by: Elizabeth | July 20, 2008 at 04:03 AM
Well, of course they have to encourage women pregnant with Downs babies to abort - hey, gotta make room in the adult institutions for those 1 in 150 children with autism that they are helping to create.
Does anyone else find it ironic that the same "establishment" who criticizes biomed autism parents for "not accepting their children as they are" is the same one that encourages women to abort babies with Down Syndrome? How come THEY aren't encouraged to accept THEIR babies, babies with a KNOWN chromosome abnormality (there is no such thing as one single "autism gene" or "autism chromosome" as they are? Oh, the irony...
Posted by: BusyNavyMom | July 19, 2008 at 10:49 PM
I don't think anyone is saying that there should be no genetic research. The problem is that there is so little research on very promising areas for prevention and treatment, such as research on vaccine injuries and research on biomedical treatments such as dietary intervention, nutritional supplements, digestive enzymes, chelation.
Thousands of parents are reporting that their kids regressed after vaccines and suffered medical issues along with the self-stimming and loss of language and social skills. These issues are crying out for attention. There has never been a purely genetic epidemic. Families need help now.
AS does fund some reseach on, for example, the immune system. But they fund far too little on biomedical treatments, toxic exposures, and vaccines. MomtoMom says, "if Autism Speaks isn’t looking under your stone du jour find another agency." Easy to say, but AS is the biggest organization and has a responsibility to the entire community.
Regarding genes, one of the interesting developments in biomedical treatments is Amy Yasko's protocal, which uses genetic tests to identify impaired biochemical pathways and give nutritional supplements targeted to the biochemical pathways identified. Although I have not tried her protocal, I know people who think highly of it.
I'm sure JB is not against all genetic research; the problem is that it is such a focus that it overshadows other research that could be helpful now. And there is a general denial in many circles that autism can be a preventable and medically treatable condition.
At the same time, it is important to note that there are many people associated with AS who are working their butts off to help people with autism. AS is not just a monolithic evil enemy.
Posted by: Twyla | July 19, 2008 at 12:49 PM
What we have to do is : learn how Autism Speaks succeeds at fundraising and do the same for a group like Generation Rescue, or SafeMinds etc. . . or get an umbrella organization on top of the groups actually trying to find a cure and interested in funding treatment and figure out creative fundraisers.. Let's think of something better than walkathons that are also effective.
What can we 'sell' that people will want to donate money for? Autism speaks is "selling' early detection. It's important. It's not enough---hey guess what--your child has autism--well, that's a good start, but let's start during prenatal care so the child doesn't ever GET autism . . . if we can convince people that autism doesn't HAVE to happen---like March of Dimes with birth defects. . . How can we sell "Autism is happening. It's getting worse. Help stop it from happening. Help those who have it, recover" How can we follow a global warming path where all of a sudden, everyone gets it. What can we offer as candy to get people to events where we educate them and ask for help, minds, support, and funds. . . (as if anyone had spare cash in these days of $5/gallon gas). ..
Can we do a scenario where we get people to deeply think about what happens when one in 5 children has autism if the rates keep increasing? Similar to showing the ocean getting 80 feet higher . . . can we somehow get people to see that these children are TRULY the tip of the iceberg? Can we get them to imagine THEIR grandchild is the one making all the noise in the restaurant, that THEIR child is the one screaming day in and day out? We need to make this REAL. Can we get Micheal Moore to make a movie for us!!! Or is there a budding Michael out there who knows how to make the poignant entertaining, provocative, and watchable without being exploitative ?
Moreover, I believe if we force insurers to pay the true costs of autism they will QUICKLY begin to fund research into things that actually work and identifying which children respond to which treatments. Right now parents are bearing the brunt. So my point is, how do we shift the money and the discussion that way. Let's get creative
Posted by: Carolyn Kylesmom | July 19, 2008 at 12:15 PM
Mom of Tom, what research sponsored by AS do you consider of valuable to autism families?
Posted by: Immary | July 19, 2008 at 11:57 AM
“Money raised on the backs of families with autism.”
This was brought up in the first comment posted and personally, I’ve always wondered why our community has focused *mostly* on generating income from WITHIN.
Personally, I’ve always thought if Americans on the *outside* of this issue were confronted with our pain and heartache, they would be bending over backwards to contribute funds to help our children knowing “there but through the grace of God go I” and realizing it could have been one of their own.
About 3 years ago, I came up with a *reality series* concept that focused on this idea (ironically because of an experience in the office of a Senator where I witnessed it first-hand) and I wrote it all down about ½ year later. It just flowed.
2 years ago, I threw the idea around but didn’t pursue it aggressively because I was deep into CAA and other projects and there was one important *facet* of the concept that I didn’t know for sure could work – until I saw it happen on television.
So over the last few months, I’ve been focused on *pushing it* and rewriting it into an official *treatment* format to present to some production companies – already got two who are waiting to see it when it’s done.
So I guess what I’m trying to say is *IF* this idea ever gets to the airwaves, it would generate millions and it would *NOT* be dependent on struggling families of children with autism.
Remember, even *long shots* are possible with God, so say a prayer!!!
And with that, off I go to *work* on it :-)
Posted by: Kelli Ann Davis | July 19, 2008 at 10:59 AM
"It would be foolish for those involved specifically in autism research to ignore genetics."
I say- It would be foolish for those involved specifically in autism research to ignore vaccines.
That's exactly what Autism Speaks is doing.
Anyone who hasn't drank the AS koolaid thinks that. And knows Autism Speaks clearly has an agenda to make autism out to be more of a genetic disorder then a genetic disorder majorly influenced by environmental triggers (i.e. vaccines). And if we have learned anything from Hannah Poling we should be asking what came first? The genetic disorder (mitochondrial dysfnction) or an environmental assualt (i.e. vaccines) that led to the genetic disorder?
By the way, is Autism Speaks funding any studies that have to do with Mitochondrial dysfunction? I would think they would want to learn as much as they can from Hannah Poling and would be beating down her parents' door to study her- and find out just how rare or common Mito dysfunction is in children who develop ASD.
The Harvard study is interesting- but if there are "autisms" maybe only a percentage of children will be positively affected by early behaviorally/educationally based intervention.
As the parent of a child who clearly regressed into autism and ill health while he was getting all of those all so important vaccines as an infant and toddler- I am displeased by the direction and focus of Autism Speaks research. Multi-millions spent on genetically based studies will do nothing to answer why my child who was healthy, and on track developmentally suddenly wasn't.
Posted by: Andrea | July 19, 2008 at 10:20 AM
Tanner's Dad: What kind of charity "does not break out how much actually goes to services for those affected"? Obvious the answer is: NO money goes to services for affected children and their families. Don't swallow the Kool-Aid they are serving at the lunch!
Posted by: Persephone | July 19, 2008 at 10:16 AM
Are we then willing to go all the way and value the life of a child diagnosed with anencephaly? These children have little to no brains and are victims of the highest form of disability. Many who live past birth are starved, some live days, weeks, months, years in their parent's arms, but most are aborted as "fatal embryos".
We have a high functioning autistic son who is a vital part of our family. Dear friends have delivered and held and nursed children w/ anencephaly and trisomy 18. They died too soon but were cherisehd none the less. Is anyone too hard to love if this is the child you we are given? The autism community needs to answer this question now, or we will go on to become the population w/ the greatest number of abortions.
Tina Franklin
Hockley, TX
Posted by: Tina | July 18, 2008 at 09:02 PM
In response to Elucidatus - All I said is it takes all kinds. If you don't want to support AS - don't!
But, I actually know of quite a few studies by some pretty impressive scientists that would not have been possible had AS not provided the funds. Most of these scientists have a strong desire to do such research (many have either a child or niece or nephew with the condition), but they are not at major research institutions nor do their regular scientific jobs deal with Autism research. If it were not for AS funding these scientists they probably would have no possibility to pursue their theories.
No one knows where we will find the answers as to what's causing Autism or what can help our children who have it. But I'm all for pulling in as many people with as many ideas as possible. Remember that accident with the moldy bread? Who would have ever thought that something so far fetched would be such a boon to humanity? Perhaps one of these small time scientists will have such a discovery. No one knows, but I'm willing to support their efforts should they try.
From what I'm seeing, working in the scientific field myself, AS is providing some pretty nice encouragement to some very smart and dedicated scientists who are pursuing some very well thought out research. Plus these scientists have a stake - they have a reason to want to find answers. AS's support of them is priceless in my opinion.
Posted by: MomToTom | July 18, 2008 at 07:37 PM
We live in a sick vain world.
Anyone with Down's diagnosed before birth will tell you that they are often pressured to abort.
It is common place now.
Worse than this possibility (parents facing potential Autism genes discovered)is the slow degradation we are already seeing in the public treatment of our kids.
It is makes one wonder what things will be like when our kids have grown.
All ethics aside, genetic research is troubling in that insurance companies may not cover you upon finding out you have the dreaded Autism genetic mix.
Since AS advocating at State levels on insurance issues they may want to consider the conflict.
And certainly it does absolutely nothing to help the here and now.
The constant environmental assault in vaccines!
AS I continue to say is nothing more than the Susan B Komen foundation for Autism.
$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$
Posted by: KarenAtlanta | July 18, 2008 at 04:49 PM
We live in a sick vain world.
Anyone with Down's diagnosed before birth will tell you that they are often pressured to abort.
It is common place now.
Worse than this possibility (parents facing potential Autism genes discovered)is the slow degradation we are already seeing in the public treatment of our kids.
It is makes one wonder what things will be like when our kids have grown.
All ethics aside, genetic research is troubling in that insurance companies may not cover you upon finding out you have the dreaded Autism genetic mix.
Since AS advocating at State levels on insurance issues they may want to consider the conflict.
And certainly it does absolutely nothing to help the here and now.
The constant environmental assault in vaccines!
AS I continue to say is nothing more than the Susan B Komen foundation for Autism.
$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$
Posted by: KarenAtlanta | July 18, 2008 at 04:48 PM
One thing comes to mind when I hear about AutismSpeaks; "Status Quo."
Hello MomToTom, please don't feel like I am picking on you, because you did make some great points. However, since you are for AS I would like to know in what way and how they have helped you. How has the biggest Autism "Corporation" helped you in providing better care such as in therapies like ABA and Speech for your child?
It doesn't take millions upon millions of dollars to help just one person. Corporate jets? Toni Braxton? Almost 1 Million Dollars for a Web Site Vendor? Please, I could keep going but I am so pissed that I have to stop.
I have said it before and I will say it again, that most of the people involved in trying to promote Autism Awareness are in it for themselves and they are trying to make a big name for themselves like trying to be some big shot showing off that he or she is trying to make a difference while getting paid for it. Thats right getting PAID FOR IT! These Assholes are making money and pocketing it off of our tears!
Autism Speaks must change. People, we are waisting our time walking in circles with these silly Autism Speaks walks. They are laughing at us all the way to the bank. I have friends that go to these walks and have no idea where the money is going. All I know is that everyone is happy and they have famous people and Radio Hosts but they can't bring their children because of Meltdowns.
Most of these people go because everyone else is going and they are making it fun. As long as we avoid the real problem and they say they are working on a cure then we will walk till the cows come home.
Posted by: Elucidatus | July 18, 2008 at 04:46 PM
I wonder why JB Handley conflates Autism Speaks with the Human Genome Project? They are two separate entities. I also wonder why, when viewing the HGP csite, he chose to focus on the "gene therapy" page instead of, say, the "medicine" page: "All diseases have a genetic component, whether inherited or resulting from the body's response to environmental stresses like viruses or toxins."
It would be foolish for those involved specifically in autism research to ignore genetics. A study out of Harvard this week revealed new information about the genetic side of autism and how educational intervention at a young age could treat it. And as far as prevention is concerned, there could be a variety of ways to prevent autism once we understand what is happening genetically and environmentally. Abortion is not the only prevention, and given the wide variety of "autisms" that might be discovered, it may never be possible to perform such a test anyway. But if that test does become possible, women will have the free choice to abort or not. Is that Autism Speaks' fault? Or the fault of the HGP?
Posted by: Ellen | July 18, 2008 at 04:08 PM
Tanner's Dad says that he was told that $57,000 was spent on a private plane for Toni Braxton. Unbelievable. I remember this woman, not long ago, appearing on Larry King crying over her son's autism, stressing how important it was for children to get the services they need and how costly it was and difficult it was and so on, yet this hypocrite has Autism Speaks spend $57,000 to get her ass to a concert to benefit autistic children?? This just confirms the complete hypocrites that are are associated with that organization. Sickening. I wonder if she knows, or cares, how much $57,000 could go towards helping a child with autism. I really find it pathetic that any parent would waste their time with this organization.
Posted by: Tina | July 18, 2008 at 03:15 PM
I am curious where the Down syndrome termination rate of 92% came from. I live in one of the most populous states in the country and we run a screening program for Down syndrome. I took a look at 2005 data and would like the share the following. The number of women taking our test is about 75% of the pregnant population. Of those who take the test, we detect around 75%-80% of the Down syndrome cases. Of those that are determined via a diagnostic screening test to have Down syndrome only about 50% chose termination. A very small percentage of patients, about 2%, experience a fetal loss. Another 10% are either lost to follow up or don’t want to tell the practitioner what they plan to do. So even with those all added in, that only comes up to a termination rate of about 62%. So I’m very curious about the 92% that is being quoted.
I also want to point out that the numbers of Down syndrome in many parts of the country are higher than in the past, but it’s not what you would call an “epidemic” like I believe the Autism situation to be. The numbers are higher because many women have put off having children until their 30s and older women (those over 35 in particular) have a much greater chance of having a child with a chromosomal abnormality and Down syndrome is one of the most common one that makes it to birth.
I am the mother of a child severely affected with Autism. I am not like Kim (I certainly don’t have the great sense of humor to be able to handle more than one child with Autism), so I opted to never get pregnant again out of fear of having another disabled child. The sleepless nights, the constant challenges with things that others take for granted just made me feel as if I had two with Autism it would kill me. I would have LOVED to have had more children, but I felt I could not financially, emotionally or marriage-wise risk the chance. I would be one of those mothers that would be first in line to take a prenatal test. Even if I chose not to abort, I would at least have the opportunity to know early so I could get the intervention services started immediately. I know that many families (like ours) had many, many months of wasted time waiting for a definitive diagnosis.
This is just my 2 cents and it is probably worth every penny. I want more research and options. I don’t want to just chase down just one theory. I want no stone left unturned and if Autism Speaks isn’t looking under your stone du jour find another agency that is, but don’t disparage Autism Speaks with such nonsense as painting them as the "Abortion Industries Best Friend". That’s just divisive and non-productive!
Posted by: MomToTom | July 18, 2008 at 02:39 PM
I just got back from a kick off lunch for our local walk for Autism Speaks. I spoke with the regional person. He said the
$57, 000 was for a plane that brought Toni Braxton to a concert that raised $2.5 million for Autism speaks. He said $0.80 of every dollar raised goes to programs and services. He said they do not break out how much actually goes to services for those affected. He said Those that post myths on the internet will go away and they get attacked because they are the "Big Dogs". He also said they do not need to get in the trenches and respond to negative comments.
I am still confused as to why I am working to move money out of our community. I guess I feel like one day they will be true to the cause for which they were actually founded. Again deja vu hits me between the eyes. Why did you have to post such a heart breaker the day of the kickoff?
Posted by: Tanners Dad | July 18, 2008 at 02:29 PM
'Passionless drone' is exactly right. Regardless of our opinions, all the information we can possibly get is valuable. Additionally, it should be noted that gene therapy is hardly the only way to use this type of information to help kids. Knowing the relationships between the genes involved, as well as the signaling pathway proteins, transcription factors, etc., they code for, novel treatments (non-gene therapy) are possible, even likely.
This should not be about focusing on justifying ones' perspective, rather, it should be about finding out as much as possible.
Posted by: Tommy | July 18, 2008 at 01:41 PM
Imagine losing 90% of your most understanding playmates before they are even born. Breaks my heart.
Posted by: nhokkanen | July 18, 2008 at 01:22 PM
A dear friend had an amnio test (pregnant at 35 yrs of age) and it came back positive for Down syndrome.
Her family and especially the pregnant lady were distraught. They did not know what to expect. It was a hair raising 3 months - can you imagine?
When the child was born - no downs. 100% "typical." Testing is not always perfect.
I bring this up because it terrifies me...
Posted by: Lisa | July 18, 2008 at 12:39 PM
My husband once knew a guy whose wife was told, by her Doctor, that their child would probably be born with some kind of defect, mental redardation I think. She was advised to abort the child, but didn’t. I only met them once, but I saw the child. She was about ten years old at the time, I think, and for the life of me, there didn’t seem to be anything wrong with her at all. I wondered how seriously the parents considered abortion, and how they might have felt had they followed her Doctor’s advice, but I was pretty sure you’re not supposed to ask about stuff like that. I know that I was only ‘supposed’ to have had three children—my last pregnancy was twins. It’s weird for me to try to imagine which child I wasn’t supposed to have had.
I’m no geneticist, but it’s my understanding that certain traits go together on specific genes, quite often, with other traits. So for instance, certain breeds of dog often have the same disorders seen often within that breed. It’s why, I think, too close of inbreeding is discouraged. But I’m sure that the traits don’t all have to be negative ones. And I’m pretty convinced that if you look at the genes that might cause a propensity for ‘autism’, (or, as I prefer to say, the genes that might cause a propensity to be slightly more disposed to be harmed by the ill effects of toxins, especially heavy metals), you’ll find some other traits there as well. You’ll find a propensity, quite often, for skills in math, engineering, science, art and music. You’ll find photographic memory skills, perhaps less often, but they’ll be quite remarkable when you find them, even amazing. You’ll find a tendency to fixate, but why do so many see that as a bad thing when it can so easily just as well be seen as passion? You’ll see stubborn independent tenacity—a priceless trait, I believe, when up against some of the mass stupidity I’ve been seeing in recent years.
This is what those who support genetic research into autism risk wiping out. Personally, I’ve always thought that their sole intent was to try to focus people’s attention away from the environment. I believe, as surely as I believe the sun will rise in the east tomorrow morning, that they have been working in league with those in government and the pharmaceutical industry, to divert attention and resources away from the issue of vaccines. I did not have this conviction before they tried to have me arrested simply for handing out information about thimerosal on a public sidewalk, so please don’t anyone accuse me of having had an attitude that would’ve deserved that sort of treatment. I keep hearing things like “they’re changing but you can’t turn a huge ship on a dime”. But I’ve been hearing that for years now. I don’t see any change in direction from them, not the tiniest bit. Ok fine, let them do their genetic research, if they must. I know that more information is always good, although I do tend to think that it will be used more in an effort to abort babies than in an effort to ‘study the blueprint’. But at least acknowledge that there is this vaccine connection, and look at that! They seem adamantly opposed to this, no matter how much evidence is put forth.
It’s bothered me a bit that, in addition to the vaccine/autism link getting next to no news coverage, the vaccine/aborted fetus issue has gotten next to no news coverage. My stand on abortion tends to be to want to leave it all as a State’s right’s issue—let the individual states decide how they want to deal with abortion rights. But when it comes to medicine and vaccinating children I hear so many people talk about the right to informed choice. Where does the ‘informed’ part come in here? How many catholics, do you think, are aware of the fact that the rubella vaccines they’ve had administered to their children were created with aborted fetus tissue? Do you think they would be pleased to know this? Confused? Angered? (not that Catholics are the only group of people who’d care) We’ll never know, because they’ll never know. And now there is another vaccine created in the same manner.
Posted by: Robin Nemeth | July 18, 2008 at 12:07 PM
Hey Andrea:
Just relaying information.
Remember, my main goal is to make sure all the facts are presented whenever possible and if you look at any of my comments over the last several months I think you'll see that's been my main focus when it comes to AS.
Heck, there's things about AS that I don't agree with (that's why I'm officially affiliated with GR because I agree and support everything JB and Stan are doing) and so I have no issue with debating the merits.
What I have an issue with is when the *attacks* become personal towards *parents* and most times when that happens it turns into a "he said/she said" situation that quickly becomes unproductive (in my view).
Regarding JB and this specific issue, I've already stated that I am in agreement with the points he's brought up especially given the *history* behind research done for Downs!!
Regarding the question about drugs...if anything was said specifically on it I missed it. I don't remember anything specifically about drugs except for the one science briefing from the Howard Hughes Institute guy.
Remember, when it comes to the science I start to doze ;-)
Posted by: Kelli Ann Davis | July 18, 2008 at 11:56 AM
Does anyone know the actual number of unborn babies who test positive w/ Downs are aborted every year? I wonder.. if there was no prenatal screening for Downs and all of those children were born...would the large number of children with Downs (just like ASD) be an even bigger red flag to government and the medical establishment that "Hey, there is an epidemic occuring with our children. Lets do something about it. Lets find an environmental CAUSE instead of the genes that might be turned off so the pharmaceutical industry can make drugs to turn them back on."
That 92% number breaks my heart and I hope they don't ever do this with ASD.
Posted by: Jennicmb | July 18, 2008 at 11:29 AM
I'm gonna play devils advocate here for a minute; we can learn plenty about how to treat autism by understanding more about underlying genetic causes / predispositions.
What I see argued here is the flip side of the usual argument; that genes cause autism, and thus biomed is no good. Both arguments seem to miss what is important; genes are nothing more than blueprints for building proteins. If you build some proteins in a different way that most people do, there will be a biological change; sometimes that change eventually manifests itself as something, say autism. If we understand more about how a difference in proteins reacts with the rest of the body to affect physiology, we understand more about autism; including potential environmental problems, and treatments. Knowing more about genes doesn't mean you have to treat the problem with gene therapy.
Genetic studies can simply be a way to identify the physiology of autism from the blueprint, as opposed to studying the final product; and that can be very useful. The final product is pretty confusing. If the argument is about resource allocation, there might be something to talk about, but we bash the usefulness of genetic research at the expense of our own credibility. Knowing more is better.
OK!
- pD
Posted by: passionlessDrone | July 18, 2008 at 11:23 AM
Kelli Ann-
I know you are in the loop with all this stuff. But, if AS funds research to find the "autism" gene(s) and they find something that leads to prenatal "autism" screenings as JB suggested- Then abortions will be the end result. Irregardless what Autism Speaks and the public health establishments intentions are. They can clearly spell out whatever they like - it won't stop people from aborting babies they think will be defective. As JB shared with us- look what has happened with Down's babies- 92% are aborted.
AS has proven themselves to be wolves in sheep's clothing time and time again.
What then is the intended purpose of funding multi-millions into genetic research? Did Ms. Teper say? Better drugs to treat it? What?
Posted by: Andrea | July 18, 2008 at 10:59 AM
JB:
Interesting timing on this piece because this issue was discussed at the IACC meeting in DC on Tuesday.
Dr. Insel brought up the fact they were aware of the controversy within the community and he reiterated it was important to communicate that it was *not* their intention to use research for this purpose.
As a result, there was a bunch of discussion on how to implement language into the Strategic Plan to clarify this position and in fact, Alison Singer made several suggestions which strongly supported the clarification.
Personally, I'm glad they brought it up and made sure it was addressed because I would *never* support research being used for this purpose!
Posted by: Kelli Ann Davis | July 18, 2008 at 10:17 AM
Peet's own quotes from the article are more damming than anything I could come up with on my own. They are rearranged to show her personality characteristics.
"As soon as I was pregnant, the neuroses kicked in," "I am a narcissistic consumer" "I was a sucker! I was caught red-handed!" "I'm the target market for the onslaught of baby products." as if that was not bad enough "[Peet] and her nanny made sure to have the following items at every hotel...a microwave"
In the last line she says ..."and not try to be perfect myself."
My god woman, you are very long way from being perfect and probably not much of a mother either. Learn some critical thinking skills.
Posted by: Sargent L. Goodchild, Jr | July 18, 2008 at 08:44 AM
Anyone who would continue to support and praise Autism Speaks clearly needs to get their head out of their ass and get a clue. Who the hell would put effort in to walks other fund raising efforts for something like Alison Tepper's and Peter Bell's salaries as well as private planes (I'd like to know who that was for!)
Posted by: Jill | July 18, 2008 at 08:43 AM
Money raised on the backs of families with autism. STOP WALKING PEOPLE. JUST STOP.
AS Annual 990 Report – 2006 highlighs
1.Legal Fees for the year - $440,000 (wow)
2.Web Site Vendor $829,000 (unbelievable)
3.PR Firm $285,000 (huh!!)
4.Employee HR consultant $110,000
5.Jet Plane for entertainer $57,000 - private jet service for a benefit? - who was this?
6.Editorial Consultant $76,000
7.Computer Software $514,000
8.Computer Equiptment $337,000
9.Mark Rothmayer $361,000 * - (see comments on total package)
10.Andy Shih $110,000 (plus benefits)
11.Mr Ringall – COO $150,000 (plus benefits)
12. Alison Singer $168,000 (plus benefits)
13. Peter Bell VP unknown (probably over $200,000)
Also – Board of Director members had their institutions receive over $2,500,000 (this is really odd)
* also eligible for $50,000 bonus a year PLUS benefits – this is a 5 year contract worth about $2 million.
Autism Speaks Form 990 raises serious red flags. Serious. This is all from the official filing for 2006.
1. Three members of the Board of Directors received $2.5 million for
their own organizations.
2. The President Mark Rothmeyer, just received a 5 year contract for
about $2,000,000 including bonuses with no prior background with autism.
3. The grants are primarily going to those representing institutions
that are reviewing the grants. There is no indication that these
conflicts are independently reviewed
4. The location of this small and new foundation is in very
expensive downtown New York facilities rented for $200,000 by the
institution that is run by the Chairman of Autism Speaks.
5. A expense of a Private Jet plane for $57,000 was noted. This is
very unusual for a new non profit groups.
6. The head of the scientific review received the majority of the
funds for 2005 for his institution for a data base - almost $3
million
Posted by: AS Sucking at the Autism Teat | July 18, 2008 at 08:13 AM