TALKIN’ SENSE IN NEW BRUNSWICK

When I first saw that Alison Singer, Karen London and Paul Offit had joined forces to found the inaptly named Autism Science Foundation, my first thought was “birds of a feather flock together.”

The reaction of Canadian blogger, Harold Doherty, had a somewhat less juvenile take on it. He posted his thoughts on the obvious truth that there is more politics than science behind this new organization. (Read it here.)

What is most striking about ASF is that its statement that vaccines are not involved in autism takes up m ore space in its stated goals than stating just what it is they do intend to research. At a time when more and more voices in medicine and science are agreeing that the vaccine-autism issue is not dead, ASF is insisting that there is no issue. As Harold writes:

Given the existence of legitimate questions concerning possible vaccine autism questions it seems odd for an organization founded to provide quality scientific research to make such a dogmatic statement conclusively ruling out those very questions. It also seems odd that the founders of this organization believe that public confidence in the vaccine program will be maintained by shutting the door on areas of research in which substantial numbers of the population believe are legitimate areas of inquiry - including members of the public like Dr. Bernadine Healy, Dr. Julie Gerberding, Dr. Duane Alexander and Dr. Jon Poling.

If the issue were as dead as the folks at ASF want us to believe, there would be no need for them to talk about how they’re not going to study it; they’d tell us what it is they plan to delve into. Ms. Singer and Dr. Offit are telling us to pay no attention to that man behind the curtain. But if we take a peek, we’ll see what it is that makes all the smoke and noise.

Go here to read Harold’s post.

MR. PRESIDENT, DON’T MAKE ME REGRET MY VOTE

Imagine, if you will, that we’re back in the sixties. Imagine that President Lyndon Johnson wants to appoint a national coordinator to oversee all of the civil rights programs that are being enacted. Now, imagine that LBJ appoints Lester Maddox to the post.

Sounds ridiculous, doesn’t it? Yet, there’s something in the air that could prove to be every bit as ridiculous.

Over at Adventures in Autism, Ginger is reporting the rumor that Alison Singer is lobbying to get appointed to the position of Federal ASD Coordinator, which is being created under the new administration. I’m not usually ne to report rumors, but then neither is Ginger. If she’s blogging it, I can only assume that there must be some substance there.

Alison Singer assuming that kind of leadership role would be so wrong in so many ways. Please go here to Ginger’s blog, and read her post. Then leave your comments there.

THE DEBATE ON LARRY KING LIVE

Below is an edited version of the recent Larry King Live, addressing the open question of the role of the absurdly expanded vaccination schedule and the autism epidemic. Although Jenny McCarthy and Jim Carrey were the main attractions, the real stars of the evening were Dr. Bernadine Healy and J.B. Handley.

The video includes a remarkable display of intellectual integrity from Dr. Healey, the former Director of the NIH. Unfortunately, this edited version does not include any of Mr. Handley’s remarks.

I have always been thankful for Mr. Handley’s contributions to keeping this debate in the forefront. I must admit that there are times when his past demeanor may have elicited a slight wince and the occasional chuckle. On this night, however, he displayed the complete package as a spokesman. He was in control of the facts to a far greater extent than the medical “experts” on the other side, and his manner was a fine balance of rationality and emotion. Very nice job, indeed, JB.

Those who saw the show were introduced to a young girl, with what appears to be relatively profound autism. As every parent of an autistic child knows, however, ASD does not indicate a lack of intelligence or a lack of desire to communicate. Carly Fleischmann has started her own blog to express her thoughts. She was in communication with the show, and some of her comments were posted to the Larry King Live blog. One of those comments was: “I don’t think we can cure autism but I wish we could. The goal should be to get are inner selves out.” I hope that young Ms. Fleischmann elaborates on that thought in her blog in the days to come.

AUTISM YESTERDAY

Each family on the journey of recovery has its own individual story. We all have our own ideas as to how we got here. We all have different approaches to the process of cure, arrived at in consultation with professionals and by considering the specific underlying problems our kids have. The one thing we all share is hope.

Here’s a new film from Generation Rescue, in which five families share their stories.


"AUTISM YESTERDAY" Autism is Reversible from JB Handley on Vimeo.

WORLD AUTISM AWARENESS DAY

It’s World Autism Awareness Day, as declared by the United Nations General Assembly. How nice.

And of course, this WAAD is simply a lead-in to “Autism Awareness Month.” Over at Age of Autism, Kim Stagliano has suggested renaming it “Autism Epidemic Action Month,” because:

We’re doers ⎯ not do-gooders. There’s a difference. Awareness is no longer enough. It never was.

That’s a fine suggestion, but for now we’re stuck with the observances recognized by mass media.

It all begs the question; why do we need to be more aware? Is there really anyone out there that doesn’t understand there’s a lot of autism out there these days?

But I suppose there is a need for awareness. The world needs to be aware that we are seeing a real epidemic, that it’s not just a matter of better diagnosis. The world needs to be aware that the question of “why” has not been answered, and that we need to get to the truth, or things are going to get worse. The world needs to be aware that the so-called mountain of evidence supposedly leading away from particular causes has disproved nothing.

The world needs to be aware that we take very seriously our responsibilities as parents. Harold L. Doherty, at Facing Autism in New Brunswick addressed that the other day. He confronted those who attack parents for daring to suggest that there may be non-genetic components in causation, and there may be a hope for a better life through the process of cure. In his well-written post, Harold states:

It is parents who represent our children, protect them and advocate for their best interests. We are not advocating for an abstraction, we are not advocating on behalf of “autistics”, whatever is meant by that expression when used by people who claim to be autistic but claim that autistic disorder is not really a medical disorder. Attacks on parents advocating for their children with autism disorders are attacks on autistic children by attacking those who protect and advance their children's interests.

Reading that reminded me of something my friend, Ginger, wrote a few years ago, in response to a comment questioning who we are to undertake the “drastic” step of attempting to cure our children of autism:

Who are we? We are their parents. 



Making choices that will impact who our children will become is the blessing and burden of parenthood. We have to make HUGE choices for our children and we don’t get to find out the final impact and totality of those choices until their lives and personalities completely unfold. 



We are flying with blinders on, with the only view in the rear view mirror and out the side windows, and we can only make the best choices we can make with that information. Every time we make a choice for our children, we unchoose every other possibility for them.

Indeed. Our everyday reality is to constantly weigh potential benefits against known risks, and to inform all of our decisions with love.

On this World Autism Awareness Day, I’m aware that the life of my family has been made infinitely more difficult because of ASD. I’m also aware, however, that ASD has provided the opportunity to be inspired in my life. I am inspired by people like Ginger and Harold, and all of the others I would never have met but for the common struggle. I am inspired by my older children who constantly demonstrate unconditional love and patience for their younger sibling. I am inspired by my wife, who works with a small team of amazing professionals to make my son’s life better. And most of all, I am inspired by the Little Rankster. He isn’t ready to give up; why should I be discouraged.

Be aware. Be very, very aware. Be aware that we are here for our children.

BACK TO THE SOMALI MATTER

A few months back, we were talking about the perceived rise in diagnosed ASD among the families of Somali immigrants living in the Minneapolis area (see here, here, and here). Well, it seems those parents just might not be crazy after all. Of course, the powers that be are not yet willing to acknowledge that point.

As the Associated Press reported:

The Health Department studied Minneapolis public school autism programs for the three years starting with the 2005 school year. Researchers found the percentage of Somali children in the programs was two to seven times higher than non-Somali children.

“What that doesn't prove is that more Somali children have autism,” Health Commissioner Sanne Magnan said Tuesday. “That is the question that is still on the table.”
. . .
. . . the report said that one of the big questions is whether children might be misclassified when evaluators aren’t familiar with the child’s language, culture and behaviors that might be routine among some racial or ethnic groups.
Here’s a little clue for the Minnesota Health Department. If the parents have been confronted with something they never (or at least rarely) saw in children in their native land, and it’s now occurring at an alarming rate after they moved here, something is going on.

The New York Times quoted a CDC official, who seems to indicate that the agency is willing to take its usual head-in-the-sand approach:

The study was done in consultation with the federal Centers for Disease Control and Prevention. Coleen Boyle, director of the agency’s division of birth defects and developmental disabilities, called the study well done but preliminary, adding, “It highlights the importance of ongoing monitoring.”

There are no plans yet to study autism in Somalis elsewhere or to do genetic studies, Dr. Boyle said.

Why is no thought given to a study that might actually tell us something: an examination about what might be different between these families’ lives in Somalia and their lives here in the US. Is it because such a study might actually tell us something?