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.

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  The "Treatment" category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.

Comments

[Dubslide]

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....

[Kevin]

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.

[Elizabeth]

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?

[Elizabeth]

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.

[BusyNavyMom]

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...

[Twyla]

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.

[Carolyn Kylesmom]

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

[Immary]

Mom of Tom, what research sponsored by AS do you consider of valuable to autism families?

[Kelli Ann Davis]

“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 :-)

[Andrea]

"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.