July 9, 2007

A Ray of Light at the U of Minnesota

I am back from my week off and I have missed much drama since I have been gone. The hostility continues to increase with the Wakefield hearing approaching, new charges that Autism Speaks is in bed with Pharma, and California wants to put the ACIP in charge of their vaccine schedule and give up their say on what will go into their own children.

As I catch up and sort all this out, I thought I would bring you something that encouraged me in it's non-polarizingness.

U Minn is setting up an autism research/treatment center that seems as if it will earnestly study biomed interventions like gfcf and chelation, and implement what they can discern might be working for children.

The article on it written by by Jeremy Olson of the Pioneer Press makes them sound like they are actually interested in finding out about what is going on in the bodies of our children, and what is working to make them healthier. I called Mr. Olsen to get his general impressions of their efforts, because I spend my emotional life bouncing between cynicism and optimism (is there such a thing as a cynical optimist?) when reading about main stream medicine's approach to autism, and he reports that they seem genuinely impressed with what Rick Rollens' MIND is doing and really want to model it.

So I am choosing to believe that U of Minn is not just engaging in fund raising spin and that they are gonna be real investigators. I look forward to hearing what their plans are, what they are going to look into first and how.

My advice to the U, because you know they are waiting on the edge of their seat for my advice, ("how will we be able to open this research center with out Ginger's help", they privately fret) ditch the mindset, "does this intervention work?" and think, "who does this work for and why?". Chelation, diet, HBOT, Zinc, B12, Antivirals all work (you have thousands of families out there that can show you their results), but not on all kids who have an ASD label slapped on them. Find a group of kids that are responding to a specific intervention and figure out why it is working for them.

Also... listen to mommies... they know what they are talking about.

The times they are a-changin'.

Any day now Julie Gerberding will call a press conference and say that after listening to parents stories and reading their research that there is a slight possibility that the vaccine schedule might be a tad too aggressive and just to be super safe they are gonna start rolling the schedule back a tiny bit and spacing out shots and screening kids before vaccination just to be sure they don't have any immune system abnormalities and maybe just perhaps free metal tests for all ASD kids!

It is coming... I can feel it in my bones!!!

I believe in the power of Christmas!!

Ginger Perine Taylor
"The Cynical Optimist"

U project's goal: a top autism center
Raising $2 million is an early step toward learning which treatments actually work
Pioneer Press
Article Last Updated: 07/08/2007 10:51:13 PM CDT

The University of Minnesota is raising $2 million to study and improve the treatment of autism, the nation's fastest-growing developmental disability, which afflicts an estimated 10,000 people in Minnesota.

Over time, the doctors leading this initiative hope the U will grow into a top U.S. autism center that evaluates the best available treatments, researches the next generation of treatments and studies the disorder's biological and genetic origins.

"We're trying, really, to get at the whole picture," said Dr. Michael Reiff, director of the university's clinical autism program.

In autism, the university is focusing on a disorder that is gaining national attention and public funding but remains shrouded in mystery, politics and controversy.

While behavioral therapy is known to help some autistic children, there is little proof of what medical therapies are effective. Many parents suspect environmental causes, such as mercury preservatives in vaccines, for the growing number of autistic children. Research has not yet proved such a link, but skeptical parents suspect a coverup.

"Right now, we don't have anything that would be considered a cure, so it's no surprise that parents are looking for answers," Reiff said.

Autism refers to a broad spectrum of brain disorders in children that typically involve difficulty talking, interacting with others or learning. One in 150 births results in an autistic child, according to federal estimates. Autistic children also have medical problems that are often misunderstood and receive inconsistent treatment. Stomach problems and sleep disorders are common, but autistic children often can't describe them.

"Whatever behavior therapies you're trying to implement, they're not going to work very well if that child is sick," said Dr. Scott Selleck, director of the U's developmental biology center.

He compared the nation's emerging focus on autism to the quest that intensified 30 years ago to gain a basic understanding of cancer.

The vision for the Minnesota center is to embrace all ideas about the treatment of autism and to determine whether they should be used in clinical care. Evidence is lacking, for example, about whether autistic children can be treated effectively with chelation therapy, a powerful but risky medication therapy that removes heavy metals such as mercury from the body. Research also needs to address whether gluten-free diets can treat autism by eliminating the gluten proteins that may have a role in the disorder. Some methods work in helping some children; others do not.

"We are open to all possibilities, but we are going to evaluate them rigorously," Selleck said. "That is the only way, in the end, that we're going to make sense of this. ... We are not going to go down the road of implementing the things we don't study."

The university's interest coincides with increasing concern among Minnesota insurers over the rising costs of autistic children and the lack of evidence on how best to treat them. Blue Cross and Blue Shield of Minnesota plans to collaborate with the university initiative and has created its own advisory group on the issue.

"What's out there just isn't working," said MaryAnn Stump, Blue Cross' chief innovation officer.

State lawmakers this session required the Minnesota Department of Human Services to study how to encourage and reward doctors to provide the best care for autistic children. The state and the university envision a "medical home" that will coordinate the efforts of family doctors and specialists who often are involved in a single child's case.

An attempt to boost public funding by more than $4 million per year for treatment and family support services was not included in the state health budget this session. However, the federal government has tripled its research dollars for autism since 2000 and increased support for education and early intervention services.

Among the university's goals is a registry of autistic children in Minnesota that will be used to research trends in the development and treatment of autism.

Selleck said he hopes the university initiative will help bridge the divide between the medical community and parents of autistic children. Experts in autism tend to broaden the implications of autism research beyond the specific groups of children in their studies. The spectrum of autism disorders is so wide that such generalizations can be faulty and confuse and annoy parents, he said.

"The choice of one's words is extremely critical," he said, "because we don't want to ignore the studies that are out there, nor do we want to discount them. But we do want to recognize what their limitations are."

The university hopes to complete fundraising later this year. Supporters Alfred and Ingrid Lenz Harrison have pledged a $1 million matching grant. The university is prepared to start with a small budget and seed money that researchers on campus could use to start autism-related projects.

But Selleck said the university has a road map toward its larger vision. The MIND Institute at the University of California-Davis started small and grew to a $100 million center within seven years. The university's goal is to become the Midwest's premier autism research institute.

"Our objective is to have the comprehensive approach to this problem, equivalent to what they are doing, within that time frame," Selleck said.

Jeremy Olson can be reached at jolson@pioneerpress.com or 651-228-5583.


1 in 150

Children believed born with autism


Autistic people in Minnesota

11 percent

Increase in boys diagnosed with pervasive developmental disorders, including autism, from 2004 to 2005

9.6 percent

Increase in girls diagnosed

1 comment:

Anonymous said...

My 7-year-old son is one of those 10,000 people with autism in Minnesota. I work for the U on one of the coordinate campuses and I'm so pleased to see the U FINALLY taking this on an issue. All I can say is, it's about damn time.

I just discovered your blog today, and have not had much time read many posts, but so far I like what you have to say.