Saturday, March 24, 2007


A couple of weeks ago, the April issue of Discover published an article, now available on-line, called “Autism: It’s Not Just in the Head.” In it, Jill Neimark examines the relatively recent emphasis on researching the link between genetics and environment, and the implications for new treatment modalities.
In one way, the field seems like a free-for-all, staggeringly disordered because it is littered with so many possibilities. But one can distill a few revolutionary insights. First, autism may not be rigidly determined but instead may be related to common gene variants, called polymorphisms, that may be derailed by environmental triggers. Second, affected genes may disturb fundamental pathways in the body and lead to chronic inflammation across the brain, immune system, and digestive system. Third, inflammation is treatable.
Ms. Neimark does not mention the “v” word in her article, with environmental factors being discussed more generally. That’s probably how it should be, for we won’t begin to understand the causative impact of particular environmental insults until we understand the processes by which those insults trigger adverse effects. It seems self-evident, however, that injecting toxins and metals directly into the body is just as dangerous, if not more so, than airborne exposure. That is, it would seem self-evident as long as you’re not one of those people who believe that ethylmercury is “the good kind of mercury.”

In any event, the Discover article is not deep science, and doesn’t blaze any new trails. It is, however, very readable and understandable. Although it give an idea as to the direction new biomedical treatments are heading, no preferences or recommendations are made. There is an implicit recognition that each autistic child presents a unique clinical picture. And for those of us who sometimes get giddy with excitement over new possibilities, there is a dose of realism:
Not surprisingly, there has been criticism of the biomedical approach, especially when doctors promise too much or parents hope too desperately for recovery. As [Dr. Jill] James notes, one mother killed herself after seeking every possible treatment for her autistic daughter to no avail, causing a furor among parents with autistic children.

Some children just do not get better, no matter what the intervention. Elizabeth Mumper is CEO of a group called Advocates for Children and former director of pediatric education at the Lynchburg Family Practice Program affiliated with the University of Virginia. Of the 2,000 children in her practice, about 400 have autism spectrum disorders. She describes one boy whom “I have not helped despite my best efforts. He is 17 and still nonverbal and has horrible, erosive esophagitis in spite of the fact that he works very closely with a gastroenterologist. He has to sleep standing up and leaning over his dresser because of the pain, and he has very idiosyncratic reactions to medications. And even though he is nonverbal, he can type anything to me. He’s alpha-smart. The horror is that he’s trapped in a body that doesn’t work.”

“I hate the term ‘full recovery,’” James adds, “because of this false hope. Some children do lose the diagnosis, but that’s rare. I don’t think that should be out there as a goal. We need to accept [the kids] and love them for who they are—because they are lovable. They’re quirky.”
Yes, my quirky son is lovable, and my acceptance and love for him is unconditional. That being said, I wouldn’t call my hope “false;” it is quite real. I am realistic. “Cure” is not a result; it is a process.

Speaking of “cure” as a result rather than a process is a sure way to start arguments. Every time a video hits the net showing a recovered kid, there’s always a flood of comments as to how that child isn’t recovered because he or she does this or doesn’t do that. It gets to the point of the absurd (“omigod, that kid’s playing with Star Wars toys”). Oddly enough, the ones who go to such lengths to debunk stories of recovery are those who accuse us of wanting our child to be “normal,” meaning just like every other child. Well, just maybe there are parents who understand the relative nature of recovery and who understand that quirkiness ⎯ unlike full-blown autism ⎯ is not disabling.

I’m not sure where the process will lead us. But I am convinced that my son’s life is better ⎯ and will be better ⎯ because we have engaged in the process of cure.

Sunday, March 18, 2007


Like many people, I have been following with interest the continuing story about the introduction of the Garadasil vaccine. Gardasil is a vaccine designed to prevent some strains of the humanpapilloma virus (“HPV”), which some scientists say may contribute to the development of cervical cancer. Although I have been aghast at the marketing of the vaccine as a cancer preventative (I guess it’s much easier to sell to the public than calling it a vaccine for viruses that are most commonly spread through unprotected sex), I have not weighed in on the debate until now.

First, the debate doesn’t directly address the issue of autism causation, although any part of the vaccine program is related to some extent. Primarily, though, I was a little timid about being labeled an “anti-vaxer” (not that there’s anything wrong with that) simply because I would like to see a little sanity ⎯ some sense, if you will ⎯ “injected” into the way we vaccinate our children.

Now it seems that my concerns are shared not just by a bunch of crazy parents, but also by a staunch proponent of the vaccine program ⎯ someone who helped in the development of Gardasil and who believes it to be a “good” vaccine that “will save a huge number of lives around the world.”

The story comes courtesy of Kim Stagliano’s blog. Kim posted the complete article, which appeared in an Indiana paper because she correctly assumed that the media would, by and large, ignore the issue. Indeed, only a handful of local outlets are showing any interest at all.

Dr. Diane M. Harper, the director of the Gynecologic Cancer Prevention Research Group at the Norris Cotton Cancer Center at Dartmouth Medical School, calls it “silly to mandate vaccination of 11- to 12-year-old girls. There also is not enough evidence gathered on side effects to know that safety is not an issue.” Instead, Dr. Harper believes that “the ideal way of administering the new vaccine is to offer it to women ages 18 and up.”

This is a scientist who has devoted her life to studying the more than 100 strains of HPV. Much of her recent work for vaccine study has been funded through Dartmouth in part by both Merck & Co. and GlaxoSmithKline. Merck, of course, is the manufacturer of Garadasil, which reportedly protects against four strains of HPV, two of which are considered to be cancer-causing viruses. Glaxo’s vaccine, Cervarix, which targets the two cancer-causing strains, is expected to be on the market by 2008.
As the director of an international clinical trial for these vaccines, and as author of lead articles about the vaccines’ effectiveness, Harper has been quoted widely as saying this vaccine could have enormous potential to eradicate the great majority of cervical cancers.

Picking up on this, but before the trials were even completed, major news media and women's advocacy groups began trumpeting the vaccine as an answer to cancer of the cervix. Once it was approved by the FDA and ACIP, Women In Government (WIG), a non-profit organization comprised of female state and federal legislators, began championing Merck’s vaccine in their home states, with many of the ladies introducing legislation that would mandate the vaccine for 11- and 12-year-olds.
Dr. Harper’s criticism is based on solid ethical and pragmatic principles that even the most ardent supporters of vaccines would have difficulty refuting:
“This vaccine should not be mandated for 11-year-old girls,” she reiterated. “It’s not been tested in little girls for efficacy. At 11, these girls don’t get cervical cancer ⎯ they won’t know for 25 years if they will get cervical cancer.

“Also, the public needs to know that with vaccinated women and women who still get Pap smears (which test for abnormal cells that can lead to cancer), some of them will still get cervical cancer.”

The reason, she said, is because the vaccine does not protect against all HPV viruses that cause cancer ⎯ it’s only effective against two that cause about 70 percent of cervical cancers. For months, Harper said, she’s been trying to convince major television and print media to listen to her and tell the facts about the usefulness and effectiveness of this vaccine.

“But no one will print it,” she said.
It’s easy to speculate as to the reasons the media seems disinclined to trumpet this tale. First, the news organizations were so quick to jump on the “medical miracle” bandwagon after Garadsil’s release was announced that they may be a bit reluctant to admit that they so easily fall victim to aggressive marketing. Moreover, it’s no secret that Merck and Glaxo are major sources of revenue for various media outlets. One only has to open a newspaper or magazine, or turn on the television news, to confirm that.

And make no mistake about it. The push by many states to mandate adding Gardasil to official vaccine schedules bears the company’s fingerprints:
. . . “To mandate now is simply to Merck’s benefit, and only to Merck’s benefit,” she said. Merck was required to put together a database on the efficacy in children before Gardasil was approved, Harper said. But instead, the company put together four study sites that “are not necessarily representative, and may not even have enough numbers to determine what they need to know.”

Since she doesn’t personally have access to the money Merck and GlaxoSmithKline pay for her HPV vaccine research, Harper doesn’t know exactly how much either has paid Dartmouth for her work. The trials are expensive, between $4,000 and $5,000 for each patient, she said. With over 100 patients in her study, some big bucks could be in the balance, should Merck or Glaxo become upset with her for making these comments. Why, then, would she risk speaking out like this ⎯ at a time when her words very well could influence legislation across the country, and prompt legislators to drop the mandates? Isn’t she afraid of losing her funding?

“I want to be able to sleep with myself when I go to bed at night,” Harper said. “My concern is still, let’s get women’s health better. It is still a good vaccine. But let’s be honest. Don’t over-promise.”
I hope Dr. Haper has tenure.

Go to Kim Stagliano’s blog here to read the whole story, including Dr. Harper’s opinions on the good and not-so-good about Gardasil.

Wednesday, March 14, 2007


When I first started this site, one of the first people to welcome me to the bloggosphere was Kevin Leitch, offering advice on how to keep my template from being such a “bloody mess.” I didn’t understand a thing he tried to tell me about the world of html and such (I’m still pretty incompetent about the whole thing), but he seemed a decent soul.

For several months, we had some very pleasant exchanges despite our very different ideas about autism and the appropriate response to it. We occasionally took each other to task, but never with any malevolence on either side. Somewhere along the way, we simply went our separate ways; and lately we have, for the most part, ignored each other.

Of course, that hasn’t stopped me from occasionally lurking at Kev’s blog. Despite rolling my eyes in private from time to time, I usually kept my silence out of respect for someone for whom I still harbor friendly thoughts. But it’s hard to hold one’s tongue when faced with posts that are . . . well, bizarre.

Lately, Kev has put forth a conspiracy theory worthy of Oliver Stone. In short, he seems to feel that the notion that we may be able to biomedically treat our autistic children with methods that are frankly alternative is part of a plan by the Church of Scientology. To be sure, in a reply to one comment, Kev protests that he isn’t suggesting a conspiracy, but merely that a dangerous cult like Scientology shouldn’t be trusted with our kids. But one can’t use phrases like “this reeks of ‘set up’ to me” and not expect to conjure up images of conspiracies. I have always believed that if something has feathers, waddles, and quacks, it is probably a duck. Well Kev, your posts are quacking.

In one of his Scientology posts, Kev tries to prove his point by implying that Julia Berle, who he describes as “[o]ne of the darlings of the autism/vaccine movement,” is, at the least, a tool or dupe of those scheming Scientologists and possibly a willing co-conspirator. Because Ms. Berle is associated with Generation Rescue, that means that organization is obviously part of the plot as well.

And what does he base this on. Well it seems that Ms. Berle’s son attends a school that has the same name as a school that is a “feeder” to yet another school that Kev alleges has some kind of vague link to Scientologists. And somehow, that school attendance got translated into a little boy being “diagnosed” by Scientologists.

But that’s not all. According to Kev, doctors Ms. Berle chose to take her son to for treatment have connections to the Church of Scientology. Uh-huh. I really don’t know if the doctors he mentioned have any real connections to the Church or not, but you really can’t tell from Kev’s ramblings.

I don’t really have any known connections to Scientology other than having one relative who couldn’t get his name off of their mailing list after making the mistake of talking to one. Likewise, although I certainly know who Julia Berle is, I’ve never met her and I don’t have any real stake in defending her. But neither Ms. Berle, her son’s school, nor her son’s doctors need defending.

While not needing a defense, Ms. Berle nevertheless would like to clarify things. Tired of seeing her comments to Kev’s post play peek-a-boo (now you see it; now you don’t), she posted one of them to the EoH Group. I decided to give her comments a more secure home here.

How brilliant that you referred to me as a “darling.” That’s pretty much all you got right in your blog about myself and my son. First off the two doctors you referred to in your post treated Baxter AFTER he was diagnosed from 5 other sources (3 developmental pediatricians, 1 regional Center and 1 school district….I know nada of their religious affiliations. For any of them). The doctors you mentioned were not involved at all in his diagnosis at all. I merely went to them for treatment. When my son's diarrhea was bright yellow and running down his leg 35x/day and he was screaming 21 hrs/day and rolling car wheels the other 3 hrs I did not ask, nor care (still don’t) about their religious ties. They wanted to help my son’s health and they both facilitated in his healing.

With regards to his school I can only assume you googled the name and came up with this other feeder school. ??? ??? Because you are completely incorrect. The Renaissance Academy or something? I have never heard of it and we are in no way associated with it. It astounds me that you get on this world wide platform and expound “truths” of which you have no knowledge.

I am confused by your statement this is a “set up.” Set up for what? I can only guess you are further functioning under your afore mentioned misinformation. I respect that others don't believe their ASD children to be toxic nor need chelation or any other biomedical intervention. I do understand that autism has many different definitions in our community and how one reacts to it is obviously individual. Healthcare is also a very private choice and in my case was made with a great deal of in-depth analysis, information and thought with my spouse. You may not agree with what we came up with...but it worked and really…honestly Scientology had nothing to do with it (It’s very hard not to chuckle as I write that sentence!!).

I felt very sad and very alone at the time that Baxter was diagnosed and was very sick. I so wanted someone to reach out and offer a shoulder to cry on because I WAS crying. I was sad. I was alone. And I was not crying because my kid was autistic…my kid was not different or quirky or unique. He was desperately, desperately ill. That is why I was crying. If I had sat back and done nothing given his state it would have been within reason to call CPS on me.

So, I offer support and Baxter’s story in case anyone could glean some hope or possibly something to help their child as well. Come meet him. He’s a cool kid. He has no supports/therapy of any kind, is working waaaay above grade level (2 yrs), has tons of friends and just won the game ball (baseball) this past weekend. His first game. I wish you the best in your future with autism…with your daughter…wherever you want to put you energy. I respect it. I don’t even ask that you respect mine. But it would be nice.

Baxter’s mom
Recovered in 2005
It’s just my opinion, but I think Kevin Leitch added two plus two, and arrived at a sum of 3,479. I’d expect better math skills from a computer guru.

Sunday, March 11, 2007


I’ve been meaning to get this post up for a couple of days now, but I’ve been a little under the weather. So this one kind of simmered around inside of me, and the more it simmered, the madder I got that stupidity still seems alive and well when it comes to autism. Fortunately, at least in this case, stupidity did not reign supreme.

The story on the front page of the Chicago Tribune the other day leapt out at me: Shock therapy called cruel; kin disagree.
In a one-of-a-kind case in Illinois, a Cook County circuit judge has ruled that it is illegal to use electric shocks from a cattle prod to control the violent outbursts of a severely autistic man.

Bradley Bernstein, 48, who can speak only about 12 words, had received the shocks for two decades under a court-approved settlement reached in 1987.

But this fall, officials at his Chicago group home halted the practice, saying that it is inhumane and that a new state law forbids it.

The judge’s ruling on Friday was a victory for Trinity Services Inc., which runs the group home, and a defeat for Bradley’s parents, Fran and Robert Bernstein of Lincolnshire. The Bernsteins said Wednesday they may appeal the ruling.

The Bernsteins have argued successfully for years that the threat of the electric prod, which delivers a jolt like a bee sting, is the only way to stop their son from banging his head against hard objects or punching himself in the face until he’s bruised and bloody.
The only way?!?

In general, I believe that parental decisions about the care for their autistic children should be entitled to respect, provided there is a rational basis, and the parents have weighed risks against potential benefits. But what potential benefit is there in using a cattle prod ⎯ and I’m not even sure a cattle prod is appropriate for use on cattle ⎯ on a human being.

To be sure, self-injurious behavior is one of the most frustrating aspects of dealing with autism. Nevertheless, whether one views it as the result of a neurological or cognitive difference or as the result of inflammatory processes with a biological cause, treating it as a bad habit that one can be trained out of through the use of pain is . . . well, stupid. And obviously it was not the answer for the Bernsteins as their son continued the behavior continued despite years of prodding.

The use of shock as an aversive had, in the case of Bradley Bernstein, been given a legal blessing in 1986, when the family won a round with the Illinois Department of Human Services based on it being a viable alternative to psychiatric medications to which he was allergic. Using the prod apparently did not sit well with Trinity Services, who administered the group home where Bradley lived. A new settlement was reached in April, allowing Trinity to gradually wean Bradley off of the prod. But by that time, Trinity’s executive director had caught the ear of the right people. After two years of effort by disability-rights advocates, the Illinois Legislature passed a law providing that treatment plans for people with developmental disabilities must not include electric shock or other aversive punishments, such as withholding essential food and drink or causing pain or humiliation.

The legal battle will go on; the Bernsteins argue that the law should not apply to a settlement reached before the statute’s passage. For now, at least, Bradley is safe.

The question I have that the press hasn’t answered, is whether Bradley’s wishes were heard by the court. Was there even an effort to discern those wishes? It is clear that Bradley is profoundly autistic, and he is of an age at which the use of alternative communication methods are not necessarily common. But there is no indication that he lacks sufficient mental competence to have a say in his treatment.

I will do all in my power to make sure my son, as an adult, never lacks the ability to make his wishes known, and that he will be taken seriously when he does so.

Sunday, March 04, 2007


Like other members of the so-called “curebie” camp, I sometimes roll my eyes when I hear about “autism awareness.” I feel like I’m about as aware of the problem as I ever want to be, and that certainly the world at large must be “getting it” by now. Sadly, not everyone in the world gets it, and maybe a little awareness training is still needed out there.

A recent post at Mommy Guilt shows that sometimes the ones who should be ⎯ and need to be ⎯ most aware are the most in need of a little education. It seems that something set off a six-year old autistic child in Hawaii, and he attacked a special-ed teacher. (At least that's the school's story, and I'm sure they're sticking to it.)

What could have set off the child? Who knows, but the school was obviously not particularly adept at working with autistic youngsters:
Ho’okena School, as well as the teacher and the District Superintendent are well aware of this child's violent outbursts. In the past, he was moved out of a summer school class because he attacked other students. Prior to jumping on his teacher, he was removed from his current classroom because the staff was worried he would hurt himself or others, and kept him in time-out from 10:55 a.m. until his mother picked him up at 2:00 p.m. The school has been asked repeatedly to at the very least provide a one-on-one aide that is trained in the art of dealing with autistic children, or move him to a school for autistic children.
But all is okay (not). The school “contends they can handle him.” And how was the most recent incident handled? The police read the child his Miranda rights and he was arrested on Assault charges. Now what do you suppose was going through a six-year old autistic’s mind as that bizarre scene unfolded before him?

As for the teacher, she has obtained a Temporary Restraining Order against the mother and the child. Oh yes, that order will certainly stop a repeat incident.

Legal action will not do anything; this child needs assistance ⎯ from someone who understands the particular challenges facing an autistic child ⎯ to be able to get something of value from the educational system. In this case, the only one who understands this is the child’s mother:
I am at a loss as to what to do. I feel my son needs help, not punishment, and he needs it now, as the window of opportunity to help him is running out.
And the school “contends they can handle him.” The child doesn’t need handling; the problems the child has need handling. But they can’t handle what they don’t understand.