Wednesday, May 28, 2008


Last week we missed the annual Autism One conference for the first time in a few years (and by all accounts, it was a memorable conference). Instead, we were back down in New Orleans for a special family gathering. It was the kind of trip that helped provide a little perspective on where we were, where we are, and where we’re going.

It’s always enlightening to get reactions from people who don’t see our Little Rankster on a frequent basis. Those people aren’t privy to the daily struggle of raising an autistic youngster and the efforts to reverse the negative aspects of our son’s ASD. So they don’t see the small daily changes. But boy can they see the big changes that occur over the course of a year; and they did see them.

Then there’s the other side of that coin. Although we do our best to maintain protocols, trips like this mean some degree of interruption in the voo-doo we do-do. Add to that the inevitable gluten infraction, and . . . well, let’s just say we got a good lesson in the value of the biomedical track we’re on.

“Home” can be a nebulous concept. It doesn’t necessarily mean the place you came from. It may not even be a place. This latest trip back to New Orleans reaffirmed for us that no matter how much we love that city ⎯ and no matter how deeply rooted in our souls the city and its culture will always be ⎯ it is not our home anymore.

But even the city we now live in is not “home.” Our home is wherever we are doing the best for our family. Home is where we’ll be on the day when we’ll know that we have done all we can to give our son the best possible opportunity to make the most of his life.

We’re going home.

Sunday, May 18, 2008


A recent article in the Star Tribune, in the Minneapolis-St. Paul area, speaks to a problem that is far too common: a problem of interest to all families of autistic individuals.

The Race family in St. Cloud, Minnesota attends church services, Mass at the local Catholic parish in their case, as a family. Their family includes 13-year old Adam. Adam is autistic.

In 2005, the Roman Catholic Diocese of St. Cloud presented Carol Race, Adam’s mother, with an award, recognizing:
. . . her efforts to encourage families with disabled children to attend mass, she said. The award cited her “untiring efforts ... to educate and advocate for others who have children with disruptive disabilities such as autism and seek to participate as a total family at Sunday mass.”

What a difference a couple of years makes.

Last summer, their parish priest, the Rev. Daniel Walz, appeared at the Race’s doorstep with a temporary restraining order, intended to keep Adam away from services at the church.
It is beyond ironic that the Church, which adamantly would resist the jurisdiction of civil courts on issues of internal governance, seems to have no problem turning to those same civil courts when trying to add a little oomph to its internal decrees.

Carol Race was, to say the least, perturbed at the lack of understanding on the part of Father Walz:
“He said that we did not discipline our son. He said that our son was physically out of control and a danger to everyone at church,” she said. “I can’t discipline him out of his autism, and I think that’s what our priest is expecting.”

The Race family defied the order, and they are likewise defying a permanent restraining order that was issued. They continue to attend Mass as a family, doing their best to keep Adam’s occasional meltdowns under control. They have asked the Diocese to rescind the order, but the only response was a release described in the Star Tribune article:
A statement released by the Diocese of St. Cloud said the church filed the petition “as a last resort out of a growing concern for the safety of parishioners and other community members due to disruptive and violent behavior on the part of that child.”

“That child,” as the Diocese calls Adam, is as much a child of God as anyone who joins others to worship.

In the article, Rev. Walz describes the nature of the problems Adam’s behavior raises. It also provides the Race’s explanation of those behaviors. The family’s explanation has the ring of truth for anyone who has spent time around an autistic youngster, or who has taken the time to try and understand.

Could Adam’s parents have handled some of the “disturbances” in a better way? Maybe, but I’m not ready to make that call when I don’t know the complete background. One thing is sure, however; taking the Race family to court will not bring anyone ⎯ not the Race family, not the other parishioners, and certainly not Father Walz ⎯ any closer to the Kingdom of Heaven.

Monday, May 12, 2008


I’ve been on one of my blogging sabbaticals for a while. It’s not that there hasn’t been anything to write about; rather, it’s a matter of other things having higher priority than spouting off my opinions. As could be predicted, it took a condescending comment from Paul Offit to spur me to sit at the keyboard.

In an Associated Press report on the next test case in the Court of Claims, the reporter decided to get a quote from Doc O, the infectious disease guy who holds a vaccine patent and is a consultant for Merck (and, as is usually the case, those parts of his résumé were left out of the article). In an apparent reference to the fact that there is more than one theory being explored, Dr. Offit said: “I think that what’s so endearing to me about the anti-vaccine people is they’re perfectly willing to go from one hypothesis to the next without a backward glance.”

For those who aren’t able to recognize it, that statement is an example of what we call “sarcasm.” And what is he being sarcastic about? It seems that some of us have the temerity to constantly reexamine our opinions in the face of emerging science. I always thought the evolution of an idea lay at the heart of the scientific method, but apparently I was wrong. (Okay, that’s a little sarcasm on my part.)

Dr. Offit chooses to cling to a static concept, without regard to mounting evidence against that concept. It’s simply too uncomfortable for him to challenge his notions.

Contrast Dr. Offit’s smug attitude with the open mind of Dr. Bernadine Healy. Dr. Healy’s about as mainstream as it gets; she’s a former head of the National Institutes of Health and she’s a current member of the Institutes of Medicine. She’s hardly an antivaccine zealot. But in a recent interview with Sharyl Attkisson of CBS News, she stated her opinion that the question of a potential link between vaccinations and autism in genetically susceptible individuals is not yet settled and deserves serious study ⎯ study that has not yet been undertaken by the institutions charged with the protection of public health.

According to Healy, when she began researching autism and vaccines she found credible published, peer-reviewed scientific studies that support the idea of an association. That seemed to counter what many of her colleagues had been saying for years. She dug a little deeper and was surprised to find that the government has not embarked upon some of the most basic research that could help answer the question of a link.

The more she dug, she says, the more she came to believe the government and medical establishment were intentionally avoiding the question because they were afraid of the answer.

Dr. Healy has not formed an opinion that vaccines are definitely a trigger of ASD, or that vaccines are a major contributing factor to the current epidemic. She’s merely saying that there’s enough evidence to warrant a real examination.

As a commentator ⎯ albeit an amateur ⎯ on the issue of autism causation, I must admit that I’ve always found Paul Offit to be . . . well, endearing. Whenever I can’t seem to find anything to write about, Doc O comes to my rescue by saying something that just calls out for a comment. It’s nice, though, to have someone like Dr. Healy, who invites comment of a more flattering nature.

Check out an extended version of the interview with Dr. Healy to hear what a reasonable scientist sounds like.