Left Brain Right Brain

At least, that is what Science Daily has to say about a new study out of Exeter and Bristol. And with a title like that, you have to imagine people will jump on it and claim that the title says that the increase is real (read it again, it doesn’t say that at all).

From Science Daily:

“There is no doubt that the reported prevalence of autistic spectrum disorders has increased spectacularly over the last 20 years,” said Ms Russell. “Medical consensus is that the increase is not a ‘real’ increase in cases but is the result of the diagnosis being made more often.

“But our examination of letters and phone calls received by scientists carrying out research into the environmental causes of autism shows that, in the opinion of many people in contact with autistic children, it is not diagnosis but true incidence which has increased, and these people think that we should be investigating what factors have led to this increase. They believe that it goes hand in hand with lifestyle changes in the late 20th and early 21st century, changes which are causing autistic spectrum disorders to occur more often.”

Let’s take a look at the abstract from the actual study, shall we?

A qualitative analysis of lay beliefs about the aetiology and prevalence of autistic spectrum disorders

ABSTRACT

Introduction There has been a dramatic increase in the prevalence of autistic spectrum disorders (ASD) in the last 20 years. The reasons for this are disputed. The consensus among epidemiologists and other experts is that greater case load is due to changes in diagnostic practice rather than reflecting changing aetiological factors leading to a true increase in incidence. We set out to examine lay views concerning the aetiology and prevalence of ASD and whether they conflict with or support this consensus position.

Methods Over 100 unsolicited communications (letters e mails and several telephone calls) were received by a UK epidemiological study of ASD. We carried out a qualitative analysis of all correspondence in order to examine spontaneously expressed lay beliefs about the prevalence and aetiology of ASD.

Results The majority of correspondents suggested theories about environmental causes of ASD. This study demonstrates the strength of lay belief that the true incidence of autism is rising, and this is due to risks from modern technologies and changing lifestyles.

Conclusion This study based on unsolicited data highlights the contrast between lay explanations of increasing prevalence and the consensus opinion of medical experts. It also demonstrates how many people in direct contact with ASD have important information to share.

Yes, they read emails and letters and logged phone calls and came to the conclusion that many people in contact with autistics think that the increase is real.

I am stunned this got published. Maybe I am too close to the subject, but the idea that many non-researchers in the autism communities think the increase is real is, well, far from surprising.

For now, let’s just acknoweldge what is said and what is not said in the paper. They say that non-researchers believe the increase is real. They do not say the increase is real.

The lead article in today’s AMA (American Medical Association) Newsletter refers to the recent articles in the LA Times,

Many autism therapies seen as unproven, risky.

In a series exploring autism and its treatments, the Los Angeles Times (12/7, Tsouderos, Callahan) reports that “after reviewing thousands of pages of court documents and scientific studies and interviewing top researchers in the field, an investigation by the Chicago Tribune found that many of these treatments amount to uncontrolled experiments on vulnerable children.” According to results of the investigation, “the therapies often go beyond harmless New Age folly,” with many being “unproven and risky, based on flawed, preliminary or misconstrued scientific research.” Moreover, “lab tests used to justify therapies are often misleading and misinterpreted,” and “the few clinical trials conducted to evaluate the treatments objectively” have yielded “disappointing results.”

The Los Angeles Times (12/7, Tsouderos, Callahan) reports that “up to three-quarters of families with children who have autism try at least some alternative therapies.” While some physicians and people in the autism “recovery movement…say their treatment protocols rest on a foundation of solid science,” the Tribune discovered “otherwise after speaking with dozens of scientists and physicians and reviewing thousands of pages of research and court testimony.”

Chelation seen as emblematic of alternative therapies for autism. The Los Angeles Times (12/7, Tsouderos, Callahan) reports, “No treatment is more emblematic of the world of alternative therapies for autism than chelation.” But, according to “pediatric toxicology experts…all chelation” medications “carry risks — even when used to treat severely lead-poisoned children.” Barbara Strupp, PhD, of Cornell University, said that when “rats with no lead exposure were treated with succimer, a common chelator given to children with autism, the animals showed lasting impairments of cognitive function and emotional regulation.” In fact, after Strupp “learned that the National Institutes of Health planned to conduct a clinical trial of chelation in children with autism, she alerted the researchers to her findings,” and the “study was later canceled.”

Alternative therapies seen as getting undeserved credit. The Los Angeles Times (12/7, Tsouderos, Callahan) reports that stories of “children who could suddenly speak” are, “for many parents…more persuasive than what experts say.” Nevertheless, “in evaluating a therapy, the challenge is determining how much, if any, of the progress can be credited to the treatment,” because, “over time, children with autism do develop, said” pediatric neurologist and autism expert Max Wiznitzer, MD.” In fact, “between 10% and 20% of children with autism who were diagnosed early may make so much progress that they are indistinguishable from peers,” and whether or not they are “undergoing alternative therapies,” said Susan Levy, MD, of the Children’s Hospital of Philadelphia, progress which parents may attribute to alternative therapies.

The recent series of stories on alternative medical approaches to treating autism caused quite a stir in the online autism community. Somehow, the groups that responded negatively appear to have failed in preventing other outlets from picking these stories up.

Chelation based on faulty premise
The risky treatment for autism that removes metals from patients’ bodies is often prompted by results from an uncertain test.

This article discusses chelation and how it is often justified using “challenge” testing. Challenge testing is not accepted by actual toxicologists. The story quotes an expert in environmental toxicology on

“That is exactly the wrong way to do it,” said Dr. Carl R. Baum, director of the Center for Children’s Environmental Toxicology at Yale-New Haven Children’s Hospital.

Also, they note that the American Collenge of Medical Toxicology has issued a statement that challenge testing is not valid:

Alarmed by the rise in the use of this test to justify chelation, the American College of Medical Toxicology this summer criticized its use as “fraught with many misunderstandings, pitfalls and risks.”

The story also notes that there is ecidence, both animal research and anecdotal, indicating that chelation therapy is not always safe. They refer to one of the Autism Omnibus Proceeding test cases, that of young Colten Snyder:

Colten Snyder, another child whose case was evaluated in vaccine court, underwent chelation after tests on his blood and hair over six years came back normal for mercury, court records state.

Given that the boy was immunized with vaccines containing thimerosal, “his hair mercury was exceptionally low,” said his physician, Dr. J. Jeff Bradstreet of Florida. “That’s pathological.”

Colten went “berserk” after being given a chelator, according to a nurse whose notes were cited in court records. He also had incontinence, night sweats, headaches and back pain. Bradstreet testified that the boy did not do well with chelation but later said it is “impossible to know” what caused the problems.

In her decision, special master Denise Vowell criticized Bradstreet: “The more disturbing question is why chelation was performed at all, in view of the normal levels of mercury found in the hair, blood and urine, its apparent lack of efficacy in treating Colten’s symptoms and the adverse side effects it apparently caused.”

They note the recent study indicating where rats without real heavy metal poisoning were given a chelator. The chelation therapy resulted in a reduction in intelligence to the rats. The implication is clear: challenge testing may be used to justify chelating non-poisoned children. There is a serious question of whether this is resulting in harm.

When rats with no lead exposure were treated with succimer, a common chelator given to children with autism, the animals showed lasting impairments of cognitive function and emotional regulation, said the study’s lead researcher, Barbara Strupp at Cornell University.

She said that finding raises concerns about administering chelators to children with autism unless they clearly have elevated levels of heavy metals. “I was just astounded and concerned for these kids,” she said.

After she learned that the National Institutes of Health planned to conduct a clinical trial of chelation in children with autism, she alerted the researchers to her findings. The study was later canceled.

“Really,” Baum said, “[parents] are putting their children at serious risk.”

Other stories echoing the recent Tribune stories:

Autism therapies can get undeserved credit

Autism: Kids put at risk

Four autism treatments that worry physicians

On shaky ground with alternative treatments to autism
Doctors and others who support experimental therapies such as hyperbaric chambers cite validity of the science. But the misuse of studies, lack of clinical trials and safety issues tell another story.

In a bit of irony, Google ads keeps linking chelationists, HBOT clinics and other alt-med groups to these stories.

So says Autism News Beat. Check out his post, and check out the video below.

OK, he isn’t any real expert. He’s not a doctor or scientist. He’s an author. But it is interesting to listen to what he has to say. From my perspective, it is interesting that vaccine rejectionism is the main example of denialism.

The Chicago Tribune has taken on a very difficult task lately. They looked closely at alternative medicine and autism. Much more, they reported a number of stories highly critical of the alternative medical doctors and practices.

Below are a number of the stories. If you haven’t read these stories, it is worth taking the time to do so.

Autism treatment: Science hijacked to support alternative therapies
By Trine Tsouderos and Patricia Callahan, Chicago Tribune

Researchers warn against misusing report

Autism treatments: Risky alternative therapies have little basis in science
By Trine Tsouderos and Patricia Callahan ,Tribune reporters

Experimental treatments

Autism treatment: Success stories more persuasive to some than hard data
By Trine Tsouderos and Patricia Callahan ,Tribune reporters

Questionable treatments for children with autism

Autism doctor: Troubling record trails doctor treating autism
Second of two parts By Patricia Callahan and Trine Tsouderos ,Tribune reporters

Miracle drug’ called junk science
By Trine Tsouderos ,Tribune reporter

These sorts of articles take a lot of work. Seriously.

Consider the usual story type: “there is controversy”. Interview both sides for “balance” and submit the story. Yes, that takes work. But, it takes a lot more work to do enough research to be confident that there is no medical controversy.

For example, is there controversy that the Geier’s “Lupron Protocol” is based on a poor understanding of autism science? Only amongst the Geiers themselves and the few parents using the “protocol”. But read what happened when the Trib interviewed Simon Baron-Cohen, the originator of the testosterone/”extreme male brain” concept of autism:

Simon Baron-Cohen, a professor of developmental psychopathology at the University of Cambridge in England and director of the Autism Research Center in Cambridge, said it is irresponsible to treat autistic children with Lupron.

“The idea of using it with vulnerable children with autism, who do not have a life-threatening disease and pose no danger to anyone, without a careful trial to determine the unwanted side effects or indeed any benefits, fills me with horror,” he said.

Scientists don’t use “fills me with horror” very often when discussing other people’s work. It would be very irresponsible for the Trib to take the “balanced story” route and presented counter arguments with anecdotal reports of amazing results from Lupron.

The same goes for when the Trib interviewed members of the Johns Hopkins team that found neuroinflammation in autopsied autistic brains, and found that they strongly felt that many alternative medical practitioners were misusing their findings:

“THERE IS NO indication for using anti-inflammatory medications in patients with autism,” the team wrote.

Meddling with neuroinflammation could actually be a terrible mistake, said co-author Dr. Andrew Zimmerman, director of medical research at the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore.

“It may actually be an attempt of the brain to repair itself,” said Zimmerman, a pediatric neurologist. Suppressing the immune response “could be doing harm.”

Again, presenting this as any sort of medical “controversy” would have been irresponsible, leading some parents to apply these therapies on their children.

To put is simply, giving some anecdotal reports claiming these alternative therapies were working would be like a story on Bernie Madoff including quotes from people who made money from his schemes. Actually, the “balanced” Bernie Madoff story would be better in that there are people who demonstrably got out early and made money from his schemes. While I don’t doubt that there were autistic kids who saw gains while under the care of these alternative-medical practitioners, there is no evidence that it was linked to the ill-conceived therapies. What’s worse, it’s easy to find the people harmed by Mr. Madoff. Few parents would be likely to step forward with complaints that the therapies were harmful.

The responses to the Tribune’s stories are simple, and to some extent effective. We all could predict them: “Tribune is against helping autistic children”; “Tribune doesn’t believe that recovery is possible”; “Tribune gives one sided, cherry picked story”.

The defense against such attacks? Being right. To do that takes work. Hard work. The Tribune writers put in the work. This autism parent thanks them for it. I wish there were more stories like this published when I was new to my child’s diagnosis.

Has the Tribune slowed the misuse of science to create ill-conceived “therapies”? Maybe. But not quite yet. Take a look at the AutismOne website, where just a couple of days ago this was posted. Here are two excerpts.

First, they (Defeat Autism Now and Autism One) still heavily rely on the Hopkins team’s results (click to enlarge):

Second, they (Defeat Autism Now and AutismOne) still consider treating neuroinflammation to be a treatment for autism (click to enlarge):

It must be frustrating for the Trib reporters to see that. Then again, in my view, reporters shouldn’t be writing in order to effect a change. They certainly shouldn’t be trying to embed themselves in the community they report on (for example, Dan Olmsted and David Kirby).

No, they should be reporting important facts. The important fact here is simple: there is no medical controversy about many of these so-called therapies. They are based on junk science, pure and simple. I thank the Tribune for having the guts to make that clear.