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The Chicago Tribune Takes on Alternative Autism Treatments

By November 23, 2009

This week, the Chicago Tribune came out with a long piece entitled Autism treatment: Science hijacked to support alternative therapies and subtitled Researchers' fears about misuse of their work come true. In essence, the article is a condemnation of the Defeat Autism Now or DAN protocol and other biomedical treatments for autism. Among the article's statements:

Most physicians recommend intensive behavioral therapy and, if asked, warn parents away from experimental treatments.

Even so, studies have found that up to three-quarters of families with children who have autism try at least some alternative therapies.

Physicians and others in the movement -- many affiliated with the organization Defeat Autism Now! -- say their treatment protocols rest on a foundation of solid science. But the Tribune found otherwise after speaking with dozens of scientists and physicians and reviewing thousands of pages of research and court testimony.

Later this week, another article came out entitled Autism treatment: Success stories more persuasive to some than hard data. The gist of the second article: kids with autism may improve with or without therapies, so it can be very hard to know what's "really" working.

As might be anticipated, the articles have raised a storm of protest -- and an equally hefty shower of approval. Two regular About.com commenters, Harold Doherty and Autism News Beat, take opposite perspectives. Harold is disturbed by what he feels is an anti-therapy stance by the Tribune, while Autism News Beat says "It's called journalism..... Get used to it. Expect more in the coming months as the news and entertainment media's narrative switches from "alternative medicine produces miracles" to "science is being highjacked to fool parents". Age of Autism, some of whose writers are specifically presented in a negative light in the Tribune articles, are predictably vocal in their criticism.

Whatever happens next, it seems clear that the autism wars are nowhere near over. In the present battle, the Chicago Tribune has made its point of view very clear indeed. It will be interesting to see whether Autism News Beat is right that the "narrative is changing."

My guess is that consensus is a very, very long way away.

Comments
November 23, 2009 at 9:36 pm
(1) Harold L Doherty says:

I have two questions.

1. Will the media herd ever start asking why research is not being done on environmental causes or triggers of autism?

2. Will the media herd ever note that the same authorities who say that they can’t be sure that autism is really increasing today because of the 93-94 diagnostic definition changes state that that thimerosal was disproven as an autism trigger because autism increased after the alleged removal of thimerosal from vaccines in Denmark in 2002?

November 23, 2009 at 9:54 pm
(2) MJ says:

The narrative is not changing. This series of articles is yet another in a long string of articles that attempt to shift the focus away from the fact that autism is continuing to grow at an ever increasing rate and the medical community is completely stumped as to why.

If you don’t want people to focus on the why then you have to give them something else to focus on – like how those dastardly alternative treatments could give a helpless child mad cow disease.

For an interesting parallel, take a look at the most recent research, released today, about another major childhood disorders – ADHD. This is another disorder that has been growing an alarming pace in the recent past and has explained away with the same excuses that are used to explain away autism. Namely, it has always been there, we are better at recognizing it, and people are just lining up for the treatments available.

And yet, if you look in Pediatrics today, you will find a study about how prenatal exposure to tobacco and childhood exposure to lead can increase the risk of developing ADHD up to 8 times.

November 24, 2009 at 12:11 am
(3) John Kirton says:

The fights and arguments will continue to go on and on and on… until someone does a COMPLETE study of all that is out there without bias.

Is that someone the government who is joined at the hip with the AMA, FDA, the big drug companies and more? Or will it be Autism Speaks funded by well meaning parents and concerned others?

Either way those two DO have biased agendas. And that leaves parents and their children on the sidelines still waiting for the shining knight to come riding over the hill with help. I don’t think it’ll happen.

I think we (Autism parents) are going to have to do it on our own if we can expect to see any real results. But how to afford it? That’s the 64 million dollar question.

I hope that we can joined forces to create the wealth needed to say to hell with the government and the promises of hope from others that will never be fulfilled to make a difference for our children today.

November 24, 2009 at 9:33 am
(4) Curtis Buxton says:

Until “science” makes the decision to do proper research into all possible causes, parents of autistic kids like me will continue to do our own. Closed minded research is routinely dismissing apparent successes because it doesn’t fit with their own paradigm. Meanwhile, we will continue to do what we can to recover our kids – because no one else will.

November 24, 2009 at 11:30 am
(5) hera says:

Its strange how often scientists don’t often rely on actual science to make their judgments.
If a biomedical intervention appears to produce positive change, then the scientific comment seems to most often be “we never studied it,and we have no intention of ever studying it.So that means it must be bad.”
No, if there are no real studies on something all you can say from a scientific point of view is “”We have not studied it yet.We do not yet know either way.”
What fascinated me is the unwillingness of scientists to gather data on these crucal topics.Either way, it would be good to have some results.And even better if scientists would also study subsets of the autistic population to identify who might actually be helped, and who won’t be, by the various treatments.
Instead the current study of choice is apparently “face gazing”.Some kids with autism don’t like to look people in the eye.Did you know that? Well, fortunately, at the probable cost of millions, we are finding out that this is true; again and again and again.
How about instead actually testing some of the results of these biomedical interventions?

November 24, 2009 at 11:58 am
(6) passionlessDrone says:

Hi Hera -

How about instead actually testing some of the results of these biomedical interventions?

Interesting question that has some difficult to overcome problems. A big one is that such tests are expensive; just getting a set of kids with autism can be tough, you’ve got to pay someone to re-diagnose them. If you want to see if improvements are specific to a particular behavior, then your diagnostic component must be very time consuming; i.e., you can’t just know that child X has autism, but child X has high scores for repetitive behaviors and stimming (or whatever). This costs time of people that are expensive.

Secondly, some of the biomedical treatments people are using aren’t really marketable in a patentable sense. Sure, my child stims less when he gets cod liver oil. Most trials are undertaken by entities that have something to gain financially from a positive finding, there are, for example, a dozen randomized trials of risperdahl. Getting someone to pony up for a series of trials on something that can be bought largely interchangeably from a variety of vendors is a tough sell.

I’m on board with your assessment, but getting there is a difficult series of tasks.

- pD

November 24, 2009 at 12:55 pm
(7) autism says:

Pd – I can’t imagine it would cost more for the FDA to study cod liver oil than it would to study Abilify, which has just been approved for pediatric use.

I am truly appalled at the willingness to say “yes” to potent drugs with known and extreme side effects, combined with the unwillingness to study the impact of benign substances that by all accounts have the potential to be helpful.

It’s also frustrating to find that top pediatricians agree that even if a child no longer presents with symptoms of autism, he can’t be considered “cured” – because the symptoms may become an issue later in life. It seems that the bar has been raised awfully high for “officially sanctioned” treatments and cures – almost to the point of making them impossible to achieve.

I’m not a believer in most alternative treatments for autism, for various reasons. But I have to say that the medical mainstream is certainly digging in its heels!

Lisa

November 24, 2009 at 2:12 pm
(8) passionlessdrone says:

Hi Lisa –

I can’t imagine it would cost more for the FDA to study cod liver oil than it would to study Abilify, which has just been approved for pediatric use.

But the FDA didn’t actually perform any studies on Abilify; they just reviewed the studies that the manufacturer performed. The manufacturer of Abilify had lots to gain by getting the drug approved, and therefore, plenty of reasons to perform randomized trials on their patented drug.

BTW – There have been at least two trials of cod liver oil in autism with benefits found. At least one (maybe both?) were randomized, double blinded trials.

It seems that the bar has been raised awfully high for “officially sanctioned” treatments and cures – almost to the point of making them impossible to achieve.

It is actually just the opposite; the only two ‘officially sanctioned’ treatments for autism are Abilify and Risperdahl. Neither treat autism, but rather, are supposed to reduce aggression and ‘irritability’, neither of which are part of the DSM as near as I can figure. That isn’t a high bar, it is more analogous to a different metric; treating things that are sometimes come with having autism.

- pD

November 24, 2009 at 2:25 pm
(9) autism says:

thanks for the info on the Abilify testing; should have dug more deeply to see that the testing was manufacturer only. I’m sure we’ll see more such approvals for adult-approved psychoactive meds in the relatively near future.

re the high bar: we’re crossing wires a bit (probably my fault).

my issue was not related to the testing of appropriate drugs for symptoms, but rather to the whole notion that autism can be treated and, potentially cured. if, as I’ve learned, being “indistinguishable from typical peers” isn’t indicative of a cure, then what the heck would a cure look like? in essence, “cure” has been placed out of range altogether. (not looking for an answer; just a bit frustrated!)

Lisa

November 24, 2009 at 3:50 pm
(10) AutismNewsBeat says:

“Will the media herd ever note that the same authorities who say that they can’t be sure that autism is really increasing today because of the 93-94 diagnostic definition changes state that that thimerosal was disproven as an autism trigger because autism increased after the alleged removal of thimerosal from vaccines in Denmark in 2002?”

Harold knows that there is a difference between an increase in “autism”, and an increase in “autism diagnoses”. There are no data to show one way or another that autism prevalence has increased much over the last two decades. But it is indisputable that autism diagnoses have grown considerably.

November 24, 2009 at 3:51 pm
(11) hera says:

Hey Lisa, “indistinguishable from typical peers” sounds a lot like recovery to me.

And given that autism is based on symptoms and functioning, would guess that you could probably find some physicians who would agree that someone who was functionally fine did not need a diagnosis.

Passionless Drone, you are right, money and high interest groups will push the focus of research.
But some of those costs ( for example identifying autism diagnosis ) would be needed for “eye glance” studies too.

By the way to put a couple of pieces of “anecdotal” data out there;
tried omega 3/6/9 combo,and it really did not help my youngest sons’ apraxia at all, but it really helped his brother , a border line ADHD/ neurotypical child; he was so much more relaxed, less given to temper tantrums, it was wonderful.
And given that it did not seem to help him much, we stopped giving it to my youngest son.
What did help my apraxic sons’ speech was sublingual B12.
He used to get a multivitamin tablet containing B12, and it did not seem to help with anything, but (with our physicians approval) we started him on sublingual B12, and within a week his speech had noticeably improved.
He fortunately is fine with liquids, holds the B12 under his tongue for 30 seconds each morning and then swallows it.
Given that we have agreed that no one seems to want to study the biomedical stuff, and that if your physician okays it,this is a relatively quick ,cheap, easy and pain free intervention, thought this “purely anecdotal” data may be helpful to someone else.
It would seem so easy to study though,if only someone was interested, lends itself to a nice pretest /posttest design, a placebo versus B12, and ensure the researchers don’t know who gets the placebo and who does not..at least it would be a beginning.
As you say though, the will to study it has to be there.
the money;I’m pretty sure those detailed genetic studies cost far more than these more useful kinds of studies would…

November 24, 2009 at 3:57 pm
(12) hera says:

hey, Autismnewsbeat,
(cough) I think that is his point.
If that is true, then potentially it would apply as much to Denmark as to here.

November 24, 2009 at 4:00 pm
(13) Dadvocate says:

My take on this piece is that it conflated two really different issues and had a hidden agenda buried within it’s overt agenda.

Their overt point was that anything and everything DAN or biomedically based was either risky or snake oil. While some of this may be accurate, it seems to me that the writers purposely sought to lump all biomedical interventions together to discourage parents from seeking treatment for them. It’s my understanding that several of the DAN protocols are designed to treat known fellow travelers of autism like GI abnormalities and disregulated immune systems. My family didn’t go the DAN route and we chose not to pursue chelation or HBOT. But like many parents, we’ve sought out mainstream but progressive clinicians who are interested in doing their best to treat these type of biomedical issues. We also strongly encourage others to do things like consult with an experienced neurologist because epilepsy and eeg abnormalities present in over half the people with an ASD. Seeking these types of medical treatment for autism has been pooh-poohed by the psychiatric community for years. Which brings me to the hidden agenda.

Throwing physicans like Harvard neurologist Herbert under the bus strikes me as a strategy that’s a desperate attempt by the psychiatric profession to continue it’s long standing (and generally ineffective) leadership of the autism agenda in the medical community.

For far too long no biomedical research was done that could benefit our kids. What little was done was parent funded and small scale. That has all changed due to organizations like Autism Speaks and their predecessors raising big money, funding large scale research, and helping the medical community organize to address this (yes) growing disorder. A lot of this research has been genetic but a lot hasn’t and it is all biomedical. That leaves the psychatric community pretty much standing on the sidelines so what’s their message? “Nothing to see here folks and even if there is, nothing works anyway.” Essentially that’s what this piece said to parents.

The good news is that I think this dead end approach will fail. Too much good research my the mainstream is now being done. Look at the IMFAR abstracts if you doubt it. http://www.autism-insar.org/

There is snake oil to be avoided but there’s a lot to be said for pushing the envelope to fund all sorts of research, including a big emphasis on biomedical and inclusion of possible environmental triggers for some.

November 24, 2009 at 6:42 pm
(14) Liz Ditz says:

As I often do for stories of this type, I’m keeping a running list or index of pro- and con- blog posts. This post is on the list.

The list is here

http://lizditz.typepad.com/i_speak_of_dreams/2009/11/the-unethical-treatments-that-autism-is-vaccine-injury-and-other-false-premises-gives-rise-to.html

November 25, 2009 at 3:00 am
(15) Twyla says:

re: Hera’s comment # 5 — Excellent points – and so well said!

And Lisa, I appreciate your comment # 7.

And pD I’m always your fan. But all those reasons shouldn’t let researchers off the hook, especially since a lot of research could be funded by sources such as donations and taxes (e.g. Combating Autism Act which has its research agenda being driven by those with closed minds and/or vested interests and so lacking focus on vaccines or biomedical.)

I do see your point though. I remember asking an oncologist whether there is value in herbal/vitamin/supplement treatments for breast cancer. She said that unfortunately it is hard to attract funding for research into substances that cannot be pattented and so are less profitable than new drugs, so she could not answer my question. Alas, what is our medical world coming to…

BTW, I have read that snake oil is high in omega-3 fatty acids. Per Scientific American “Research since the 1980s has demonstrated the necessity—and efficacy—of omega-3 fatty acids. These acids not only reduce inflammation, such as arthritis pain, but also improve cognitive function and reduce blood pressure, cholesterol and even depression…” See h t t p : / / w w w . scientificamerican.com/article.cfm?id=snake-oil-salesmen-knew-something
The article does conclude, though, that “Of course, most 19th-century snake oil salesmen did not, in fact, sell this particular product. Even those hucksters who did sell actual snake oil would likely have sold the rattlesnake variety, nearly useless for any ache-relieving medicinal purpose. But the original Chinese purveyors of snake oil offered something that probably did exactly what they claimed it would do: help fellow workers relieve the pain of their labors.”

November 25, 2009 at 9:52 am
(16) ANB says:

It’s good to see someone admit she is advocating for snake oil.
; -)

November 25, 2009 at 10:36 am
(17) Joseph says:

This is another disorder that has been growing an alarming pace in the recent past and has explained away with the same excuses that are used to explain away autism. Namely, it has always been there, we are better at recognizing it, and people are just lining up for the treatments available.

The prevalence of ADHD in adults is over 4% (e.g. Kessler 2006), and up to 16% for “broad ADHD” (Faraone 2005). It’s a very subjective diagnosis, and it’s not surprising that prevalence varies widely across studies.

And yet, if you look in Pediatrics today, you will find a study about how prenatal exposure to tobacco and childhood exposure to lead can increase the risk of developing ADHD up to 8 times.

Those risk factors are entirely plausible, but they don’t argue for an “epidemic” at all. Quite the contrary. If tobacco and lead are major risk factors, the prevalence of ADHD should have dropped substantially in the last couple decades.

November 25, 2009 at 11:54 am
(18) hera says:

Thank you very much for your kind comment Twyla.
Joseph;if one makes the assumption that there are only two specific risk factors, and exposure to both of them has decreased, then it would seem logical that ADHD in real terms would have decreased also.
However, given that we know that two basically unrelated environmental toxins are risk factors, it could also be true that there are other currently unnamed environmental toxins which are risk factors also.
If other enviromental risk factors have increased at the same time that lead/cigarette exposure has decreased, one would still expect the rates of ADHD might potentially remain stable or even increase.

November 25, 2009 at 1:11 pm
(19) Twyla says:

LOL, ANB — I knew that comment could come back to haunt me! But interesting I think, anyway.

November 25, 2009 at 1:16 pm
(20) Twyla says:

An interesting comment to the Chicago Tribune articles from “Bensmyson” who says:

“Is it just me or is there a banner at the top of this page advertising Cymbalta?

“Eli Lilly, the company that introduced Cymbalta, Lilly’s second highest selling drug, is implicated in the questionable publication practices.

“Eli Lilly has faced scandals over drug promotions before. It recently agreed to pay $1.42 billion in the U.S. to settle claims it illegally marketed Zyprexa.

“Cymbalta is used off-label by mainstream medicine to treat children diagnosed with autism, as well as their parents’ depression.”

***

Pharma ties everywhere… So much pharma money, at a time when many industries are struggling.

November 25, 2009 at 2:57 pm
(21) Joseph says:

Web ads? Twyla, you and the other conspiracy theorists need to grow up a little. Right now I’m seeing a banner ad here at autism.about.com for used cars ads at the NYT. Are we to assume Lisa Jo is a shill for the car industry?

Yes, pharma ties are everywhere. I, for example, have a grand-uncle who is a retired doctor, and I’m sure he used to prescribe pharmaceutical drugs.

November 25, 2009 at 5:00 pm
(22) Lisa Jo says:

Twyla – as you may know, this site is a part of About.com, which has about 750 “guide sites” on every topic under the sun. About.com is a part of the New York Times Company. Their marketing and advertising is out of my hands.

Lisa

November 26, 2009 at 1:29 am
(23) Twyla says:

Lisa, the comment I quoted above was about the Chicago Tribune site. Yes, there are ads everywhere, but there seem to be especially many prescription drug ads attached to the news these days in various media — on TV & the internet and in magazines & newspapers.

November 26, 2009 at 3:18 pm
(24) AutismNewsBeat says:

Ad buyers are very particular about which media they choose when they spend their clients’ money. If a client is selling baby clothes, for instance, then ad money is best spent on websites, magazine, TV shows, etc. that attract the same demographic that is having babies – young women. If the client is selling pharmaceutical products, the ad buyers goes for an older audience. The audience for major metropolitan newspapers skew older.

Instead of complaining about ad sales at the Tribune, why not try addressing the major points made in the story? The main criticism I’m reading are 1) that the Tribune ignored the dubious studies and blog entries that link vaccines to autism and 2) the Tribune should have written about something else. Color me unpersuaded.

November 27, 2009 at 2:22 pm
(25) Jerry says:

hera, the problem with that argument is you can hypothesize about any environmental trigger causing anything, and when it is removed and rates don’t decrease, or tested and disproven, you can continue to argue that either there are other triggers, or ‘only susceptible people’ are affected.

It’s a combination of moving the goalposts and special pleading.

re: ‘cures’ or treatments for autism, they’re so hard to test both because autism often changes in severity either day to day or year to year, and beause it’s a spectrum, symptoms are varied and distributed, no child is alike.
Some will respond to therapy, others just won’t.

November 30, 2009 at 5:51 am
(26) hera says:

Jerry,
It already appears that autism has multiple causes; fragile x syndrome, congenital rubella, maternal intake of sodium valporate, maternal intake of thalidomide, a Texas study suggests mercury in the air is a risk factor,and the government conceded in the Hannah Poling and Bradley Banks cases that vaccines caused their autism/pdd/NOS.
A very small study suggested taking tylenol instead of ibuprofen after vaccines was a risk factor.

Having a brain injury at birth is another risk factor, as is having a family history of autoimmune diysfunction.

Unfortunately any study on this has to take into account the real life complexities of researching a disorder characterized by massive disparity in symptoms and probably with multiple causations.

The one thing I don’t see any proof of, is that all cases of autism are purely genetic.

When hearing this theory, the first thing I did was check for identical/monozygotic twin studies.If autism is only genetic then twins with exactly the same genetic material should have a 100% concordence rate.They do not.

There is obviously a genetic component to any illness,(heart disease runs in families,as does breast cancer, for example,) but focusing on the environmental triggers that people can control is likely to be of most help to real people.

Also, as we identify what the different causes of autism are, and what pathways are involved in the damage ( it seems the glutathione pathway may be implicated in some cases) then perhaps we can also refine the different treatments available so we can work out who is going to be most responsive to what treatment.

November 30, 2009 at 9:46 pm
(27) Autismnewsbeat says:

The Texas study that suggests mercury in the air is a risk factor” is junk science. The researchers didn’t take urbanicity into account.

The government did not conceded that vaccines caused autism in the Banks and Poling decisions.

Identical twins also don’t have the same fingerprints.

December 2, 2009 at 6:38 am
(28) AutismRealityNB@gmail.com says:

AutismNewsBeat, who subscribes to the neurodiversity ideology, rejects as “junk” science any science that points to environmental factors in autism causation.

December 2, 2009 at 3:46 pm
(29) ANB says:

Ha ha. Good one, Harold!

December 3, 2009 at 9:00 am
(30) Jersey Joe says:

All I know is that my son started speaking 10 days after I started him on a nutritional approach by an alternative MD.

He’s now in 11th grade and an athlete{3 sports and honor roll every marking period}. He has some socialization issues, but he’s light years from not talking.

I don’t trust the FDA or the government.

I urge everyone to go on line and check out http://www.drwhitaker.com. It’s about the connection between vaccinations and autism.

December 3, 2009 at 10:01 am
(31) ANB says:

So by your own admission, “all you know” about the unproven nutritional approach to treating autism is what you think you saw. Did you not also know that ASDs are pervasive developmental disorders, which means these kids continue to grown and adapt and learn, albeit at a different rate than NTs?

Given enough time, and the absence of a control group, tap water will look like an effective treatment for autism.

December 3, 2009 at 4:44 pm
(32) hera says:

Hi ANB;
you are right about fingerprints.Apparently the ultimate shape of fingerprints is believed to be influenced by enviromental factors, such as nutrition during pregnancy, maternal blood pressure, position in the womb, and finger growth during the first trimester.
The enviroment seems to have a lot of influence on a great deal of our development.
Looking at the development of monozygotic/identical twins is a good way of identifying the differences between purely genetic and combination enviromental and genetic causes.
Out of interest, what is your stance on causes of autism such as congenital rubella, materal thalidomide intake/or maternal sodium valporate intake?
Fragile X syndrome?
DO you feel they are possibly linked, or do you feel these are also not well researched?

December 3, 2009 at 7:42 pm
(33) ANB says:

Autism is defined by a set of behaviors, so it could caused by CRS, fragile X, thalidomide, measles, etc. Nobody can seriously deny that some case of autism have environmental causes. And obviously, some manifestations of the disorder are highly heritable.

December 7, 2009 at 1:15 am
(34) Lainie Kazan says:

Has anyone read the National Standards Report for autism treatment that came out recently? I believe it was in the works since around 2005, although little of it was really new. It should be taken very seriously though.

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