Thursday, January 21, 2010

AN OPEN LETTER TO THE TRIB

January 21, 2010


Mr. Tony Hunter
President, Publisher
Chicago Tribune Company
435 North Michigan Avenue
Chicago, IL 60611


Dear Mr. Hunter:

A few days ago, we called the circulation department to cancel our subscription to The Chicago Tribune. We thought it appropriate to write and explain why we thought this necessary. Put briefly, the Tribune’s continuing written assault on the autism community and those who serve us has caused us to lose the high degree of respect we once held for your newspaper. Specifically, articles written (or co-written) by Trine Tsouderos have, in our opinion, strayed from the principles of balance, fairness, and the truth.

By way of background explanation, our family is one of the hundreds of thousands in this country who have felt the impact of the autism epidemic. We are part of a growing number of people who have chosen not to meekly embrace our son’s disability, but rather to seek biological explanations for the clinical manifestations that led to the diagnosis and to utilize the best medical treatments to treat the underlying physical conditions. We are not alone on this journey, and like most of the parents who embark on this course, we are well-educated. Both of us have professional backgrounds (including a background in mainstream medicine).

Each case of autistic spectrum disorder is unique from a standpoint of both cause and treatment. We have utilized some so-called “alternative” therapies together with more traditional treatments. The continued improvement of our son’s clinical manifestations has been nothing short of remarkable. Our story is not unique; there are many of us who have seen first-hand the success that can result from treating underlying physical conditions instead of just the symptoms by which autism traditionally has been defined.

Many in our community have attempted to speak to Ms. Tsouderos about the healing we have seen in our children, but she has shown little interest in exploring our perspectives. Instead, she chooses to rely on the same talking points we have so often heard from groups and individuals with vested interests, while ignoring scientific studies providing a basis for the treatments.. On those occasions when she does quote someone – whether a parent, a practitioner or a scientist – that quote is invariably taken out of context and is either inaccurate or incomplete. For example, an article this past November, mined several quotes from Dr. Martha Herbert, a distinguished neurologist at Harvard. This was Dr. Herbert’s response to the Tribune, which your paper chose to ignore:

I did a rather long interview with the Tribune to explain my thoughts on chelation and additional approaches to solving the health issues connected to autism. The only consequence of my interview is that you use a solitary quote to make me sound contentious and defensive. Is there a reason you chose not to use something I said that would actually illuminate the discussion surrounding chelation and other medical treatments for medical compromises that may exist in these children?

To be sure, this is a complex and often controversial subject. The Tribune’s editorial stance on autism treatments, however, seems inconsistent with other positions it has taken. Recently, your paper printed an exposé on overuse of drugs at nursing homes, a worthwhile subject. Why is the only focus of your autism coverage upon so-called “alternative” treatments? Why is no attention paid to the frighteningly large number of physicians who want to treat autistic children under the age of five with dangerous stimulants and psychiatric pharmaceuticals? And why does the Tribune not show outrage at the fact that the American Academy of Pediatrics endorses that off-label usage of pharmaceuticals in their published treatment recommendations for autism?

The Tribune has run recent articles on rising numbers of allergies (including one noting the difficulties the Army is having in filling its ranks due to high incidences of allergies and asthma). Is your paper at all interested in exploring the interrelationship in the alarming rise of various auto-immune disorders: childhood cancer, asthma, allergies, ADHD and autism spectrum disorders (although not unanimous, more and more scientists are acknowledging that disorders in the immune system can cause clinical manifestations of autism)?

Our kids are the canaries in the coal mine. Something is going wrong with an entire generation, and it is rooted in environmental causes: adulteration of our food supply, chemical pollution, contamination of our water, overuse of antibiotics, and quite possibly a public vaccination schedule gone haywire. It’s not just scientific research that’s needed to put these puzzle pieces together; we also need the illumination of the questions in order to solving the questions a public priority. The role of the press is to present the issues in such a manner as to fairly raise the questions. In that, the Tribune has fallen well short of its duty.

The articles by Ms. Tsouderos were given front-page treatment, including the latest, which came at a time when every other organ of the press was focused squarely on the recent tragedy in Haiti. The lack of proportionality in that is summed up in one question. Why did the Tribune not show equal alarm with a major front-page article last month, when the Centers for Disease Control announced new autism statistics? According to the CDC, autism spectrum disorders effect one-in-110 children (one-in–70 boys), which is a dramatic increase from the one-in 150 the CDC announced just two years ago.

This country is facing a public-health crisis of catastrophic proportions, in which too many families are having to make difficult decisions. Instead of amplifying the seriousness of the situation, the Tribune has chosen to blindly criticize some of the scientists and clinicians who are searching for the answers.

We have no doubt that the loss of our subscription will have little economic impact on your company. Further, the publication of the articles in question will have little adverse impact on the Tribune’s reputation – at least not immediately. What the Tribune has lost, however, is far more precious. It has lost the integrity upon which the paper’s reputation was built through generations.

Yours truly,

Sym and Wade Rankin

cc: Samuel Zell
Chairman, Tribune Company

17 Comments:

Anonymous Lujene said...

Bravo, my friend. You hit that one outta the park (as usual)!!

1/21/10, 10:52 PM  
Anonymous María Luján said...

Thank you Wade

Your letter is excellent.

Hope your family is well.

1/22/10, 8:20 AM  
Blogger Wade Rankin said...

In the above letter, we mis-cited the new CDC figures as being "on-in-every-seven" for boys. The number is actually one-in-70, which is a significant difference. I initially put in a correction at the end of the post, but on reflection realized that correcting it in the body of the letter was better.

In addition to correcting it above, I have sent corrected letters to Mr. Hunter and Mr. Zell, with suitable apologies. That's what ones does when one gets it wrong: correct it, apologize, and move on. We are moving on from the Trib.

The wrong number was a typo that got through the editing process. The seriousness of the growing numbers remains. This is a public-health crisis, requiring the attention of us all.

1/22/10, 10:31 AM  
Anonymous Anonymous said...

You can fool yourselves all you want, but this garbage is not helping your son. Your doctor is ripping you off. You can look for small changes and claim that they are because of chelation, but that garbage does nothing.

Furthermore, any treatment that doesn't show results after a month or two, is not doing anything. My wife and I tried, chelation, methyl B-12 shots, vitamins A,B6, C,D, E, glutathione, folic acid, folinic acid, fish oil, magnesium, calcium, zinc and more.

These things are not the cure for autism, if they were, then there would not be anymore autistic children. You're getting ripped off.

1/25/10, 10:43 AM  
Anonymous Oneboysmom said...

Good for you. Your letter makes many good points and if more people stood up to the media, we might eventually be heard.
Our children really are the canaries in the coal mine. I have a 6 yr old with moderate to severe autism and a 3 yr old with precocious puberty.
We should all be afraid of what this looks like for our children and grandchildren.

1/25/10, 4:09 PM  
Blogger Wade Rankin said...

Anonymous,

I do not comment on specific protocols we use, but I can say this.

If we had seen only "small changes," we would not have kept up with this. My son's progress is remarkable.

Not everything we've done has shown big changes, but when you see major changes with a particular part of a protocol, those changes are the specific things that were being targeted, and those changes stop if you stop the treatment, you can make a reasonable deduction as to efficacy.

I can't speak to your failures because every case is different. If you were using a one-size-fits-all approach, success is highly unlikely. If you did not start your interventions by cleaning up your child's diet, you did not lay any foundation. If you only tried for a couple of months, you didn't try at all.

Whatever your story is, I wish you and your family well.

1/25/10, 9:20 PM  
Blogger Ted Seeber said...

I'm one of those guys on the fence. Undiagnosed until age 30, I can see the benefits of high functioning (and in some cases with the right support, even surprising results from low functioning) autism. OTOH, there's my nephew, who has shown the same remarkable results from biomed therapies as your son.

So take this as somebody who has seen both the neurodiversity side of things, and the "cure" side of things, and has an opinion about both.

My opinion on the neurodiversity side- it's ridiculous to expect society to change for a 1:93 minority. Just look at the homosexuals, a 1:10 minority, and the damage they've done to their own cause with their insistence on gay marriage.

My opinion on the cure side: be careful. It's not just "canary in a coal mine", there's WAY more going on than you know. 60-70 year olds, given the same diagnostic criteria we have today, also show a 1:93 incidence of autism- but in their day, it was called being eccentric and it was accepted as a part of individualism. Very often autism is linked to very special genius levels of detail awareness- wouldn't it be awful if the "cure" to make your son go to a birthday party ruined his future career? So be aware of obsessions- and encourage them, even while removing the distractions of a slow brain.

1/26/10, 12:14 PM  
Anonymous Anonymous said...

I can't tell you how many people we know handed us a copy of the Tribune article you write about knowing we take our son to a DAN doctor. After so many negative experiences within the regular medical community we sought "alternative" treatments. Considering the regular medical community prescribed Risperdal for our son who ended up having psychotic episodes and in the er...we'll take the vitamins, probiotics and anti-yeast any day! They haven't cured his autism, but they have helped him be happier, healthier and improving faster in ABA therapy/school.

1/26/10, 3:18 PM  
Anonymous Tera said...

This is to Ted Seeber.

Thank you for your input it is interesting.

Where did you find that 60-70 year olds given the same diagnostic criteria we have today, also shows a 1:93 incidence of autism?

I personal find this very hard to believe. I think if that was truly the case then autism would not be that big of a deal. Everyone would be used to these odd behaviors, lack of speech, self injurious behaviors, etc. My grandparents certainly are not used to children not being able to understand what is said to them, seeing a child bang his head on the wall or have a 4 year old smear poop all over the walls. These are things that many children on the spectrum do. These things are more then eccentric or part of ones individualism. (These are only examples, there are many more and not all children on the spectrum do them)

I have a son who is 7 years old and still can not speak. If he has some special genius I don't want to destroy it but I want to help him get to a place where he can actually use it. I have not met any parent in the "cure" camp that wants to destroy their child's unique gifts or their individualism. I want my son to be able to be independent and be the individual he desires.


I find it frustrating that this is the response from high functioning ASD individuals. I feel it hurts other ASD children who are not as high functioning but have the potential through biomedical and traditional therapies to improve and possibly "recover".

1/29/10, 2:09 AM  
Blogger Ted Seeber said...

The 1:93 rate being constant among adults of every age group came from a study done in England:
http://news.bbc.co.uk/2/hi/8268302.stm

You're talking about lower functioning kids. HALF or more of that 1:93 autism rate is higher functioning autistics that wouldn't have even been considered to be on the spectrum 20 years ago. Higher functioning autistics still have social issues- they're just not as visible.

70 years ago a high functioning autistic would have been called eccentric. Or perhaps fixated.

If you go by the old diagnostic criteria, the DSM-III for instance, you'll see that autism rate instantly lower to 1:200 or lower.

1/29/10, 11:06 AM  
Blogger Ted Seeber said...

Two Separate Issues require Two Separate Replies.

Just because your 7-year-old doesn't talk (I know one high functioning autistic in my family who didn't talk until 18- and then needed physical therapy for his atrophied vocal cords. He's still not very vocal today- but he's a happily married father of a 1 year old boy) doesn't mean he doesn't think.

To find his special genius- look at what he's reading and likes to do. One thing about autistics in general is we're very passive-aggressive; we avoid what we're not good at and concentrate on what we ARE good at.

The most heartbreaking story I've read on autism this year was about the single mother of three autistics in Hillsboro Oregon. Two were high functioning, one was low. The middle child, a high functioning autistic, was doing quantum physics as a hobby at 14.

And she was attempting to discourage him from going to college, because she thought he couldn't handle the social situation.

If a kid is doing quantum mechanics for the fun of it, he'll succeed in college even with NO social life.

1/29/10, 11:16 AM  
Blogger Wade Rankin said...

"You're talking about lower functioning kids. HALF or more of that 1:93 autism rate is higher functioning autistics that wouldn't have even been considered to be on the spectrum 20 years ago. Higher functioning autistics still have social issues- they're just not as visible.

Okay Ted, I'll bite. Where do you get your statistic that "Half or more" of the rate falls within the HFA population. It would be just as easy for me to say that the HFA/Asperger's side of the spectrum is still vastly undercounted (anecdotally, I can count at least ten people I personally know who could be diagnosed as such, and who really have no clue they could be).

1/29/10, 11:22 AM  
Blogger Ted Seeber said...

This also comes from the BBC:
http://news.bbc.co.uk/2/hi/health/8083280.stm

Though the article certainly has a tendency to agree with you that HFA/Asperger's is vastly undercounted.

But that goes to my point. The more they add to the DSM, the more autistics we find. There's very little evidence of an "autism epidemic", there is great evidence for the criteria being expanded in the DSM-IV and now the DSM-V which counts even ADHD kids as being on the spectrum.

Now back to your original topic- I've seen it in my own family. Something in autism is making these kids more sensitive to environmental poisons such as mercury. DAN doctors do great things with this. I don't expect a cure from DAN doctors, and caution parents that crushing many of the autistic behaviors a normal person would find disturbing might also crush the reason a kid is autistic to begin with that society could well benefit from with a little tolerance; but I'm also well aware that minorities with greater representation in society than us have failed to gain acceptance.

1/29/10, 11:33 AM  
Blogger Wade Rankin said...

Fair enough Ted. I tend to be skeptical (oh, that word) of unattributed press reports, given their propensity to screw up even the attributed stats they report, and also given their propensity to ignore what doesn't agree with their bias.

We will continue to disagree about there being an epidemic, but we're closer than you might realize on your other points.

I look at "cure" as a process rather than a result. The goal is to alleviate clinical manifestations that are disabling. As I tend to see "autism" not as a distinct disorder, but rather a descriptive term for a constellation of such manifestations, the idea is to treat underlying physical problems (what some inaccurately refer to as "comorbidities"), hopefully resulting in a reduction of the disabling manifestations.

Without regard for a belief in that process of "cure," I'm not sure how anyone could disagree that greater tolerance by society is not needed.

Thanks for the comments.

1/29/10, 11:46 AM  
Blogger Ted Seeber said...

I'm all for treating the comorbidities. Especially the ones related to pollution and other external epigenetic causes.

But I've got my own suspicious nature from Autism Speaks commercials that refers to autism as a "monster that stole our child" and FAAAS groups denying that autistics can be good parents and urging their spouses to get divorces.

I really am very much on the fence in between the neurodiversity HFAs and the parents of lower-functioning autistic children. And while I see my autism as being an integral part of my own career, I'm even more amazed at the heights such famous (and in many ways, lower functioning than I am) autistics as Einstien and Edison have reached in the past.

1/29/10, 11:52 AM  
Blogger sdtech said...

Each year there are twenty five thousand to forty thousand more kids diagnosed with autism (depending on the autism rate of 1/150 or 1/100). This is an epidemic beyond imagination (including Albert's). The Chicago Tribune is selling papers by riding on the backs of those kids. They have no shame. Good work Wade. God speed to your son’s recovery!

2/8/10, 1:35 PM  
Blogger Amy said...

My son is 3 and a half and was diagnosed over a year ago. He has been in a blended preshcool program and has been receiveing ABA therapy. The improvement has been remarkable. Screw the critics. We know our children and can tell what works and what doesn't. I still cry myself to sleep at night sometimes and am angry and resentful that my child has to suffer and work harder to try to "fit in." Before you jump down my throat for that comment - I embrace his uniqueness and kooky rituals. I have learned to laugh rather than cry or try to correct them, but in order to move in the space that the rest of society does, you must learn to abide by the norms required, or face further frustration and ridicule. I applaud all parents willing to go toe-to-toe with anyone in order to bring more awareness to Autism. God Bless.

4/9/10, 10:23 AM  

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