Sealed With A Kick

I believe they belong to you. A petition for relief via the Dorgan Amendment to Senator Al Franken:

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Given the appalling statistics regarding the misdiagnosis of autism, this headline is a little misleading. It represents the number of children 'diagnosed' with autism, which may or may not represent the number of children who actually have it. The definition of 'autism spectrum disorder' is a fluid target and is far more inclusive than it ever used to be. It has essentially become a dumping ground diagnosis for any and all disorders of social and/or intellectual dysfunction that can't be categorized elsewhere. The diagnosis has become so pervasive that actual experts in the disorder have lost the floor to the 'anyone can diagnosis it in anybody at any time' crowd. That's why statistics like these are so irresponsible. They unnecessarily frighten parents who are at the whims of movement that has lost its perspective in the rush to jump on the bandwagon. Classic autism is a devastating developmental disorder, which is why labeling children with other more benign behavioral disorders is such a huge disservice to the autism community. Being a little different or a little difficult is not a disease. One would hope our government's main epidemiological clearinghouse would demand better evidence than the subjective diagnosis of millions of children by practitioners who often don't even agree on what constitutes true autism themselves. I have an autistic niece. She is clearly and profoundly disabled and, at age 18, we have accepted that she most likely will be all of her life. Obviously, there is a spectrum of severity in autism and her experience is not necessarily the norm, but it is extremely irritating to me to hear from parents who "cured" their child's autism or whose child "outgrew" their autism. Their success is probably more a reflection of a bad diagnosis than of any miraculous recovery due to diet or therapy. These pretenders to the autism label (especially celebrity ones) diminish the true devastation of autism and spread dangerous misinformation.

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*A church fundraising program suggested by Tbogg to raise money for Carrie Prejean's breast implants, currently in the process of being repossessed by the Miss California Pageant.

Must admit, I haven't paid much attention to Ms. Prejean. Just assumed she should be forgiven for her poisoned little heart because if God saw fit to put it in such a purdy package, it couldn't be all bad, right?  Shoot, had I known her best assets were just snap-ons, and lay-away snap-ons at that, I could have foregone all the moral ambiguity and just gone ahead and hated her for the bigoted, hypocritical little turd she is.

November promises to be a banner publishing month with books by Prejean AND Palin coming out just in time for Christmas giving. The literati must be quaking in their boots with concern about the impact of these two intellectual giants on the American literary canon.  Few can rival "These Boobs Were Made for Preachin'" and "God is my Rod & Reel" for sheer homespun audacity (of dopes).  The one bright spot is probably one of these inspired tomes will finally knock Glenn Beck off the number 1 spot.  My faith in the human race will finally be restored when we quit rewarding mentally deficient lunatics like Beck (and Prejean and Palin) with book sales and television ratings. 

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And this explains exactly what is wrong with our 'online expert' culture. The average person is no longer able to distinguish between bona fide expertise and the pseudo-status of online bigmouths whose absolute conviction in the correctness of their opinion and their right to blare it all over the Internet now replaces decades spent trying to thoroughly understand a subject so you can speak with authority. Now posters 'speak with authority' on myriads of topics without doing the hard work to really understand any of them. The rise of the online lay expert has real-life negative consequences in medicine, politics, science, etc. where any rube who has read a book and devised a personal theory can expound at length on dangers of vaccines, the coming socialist new order or any of a litany of semi-literate populist causes. This sort of 'clout' is not something to celebrate.

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There is a classic line in the movie Monster House where the exasperated babysitter confronts the odd behavior of her charges by saying something like “I don’t know what you have, but I’m sure that it has initials and there are pills for it.” I sympathize with her frustration.  In our family, we have identified and assigned initials to one such disorder; C.U.D or ‘Consequence Understanding Disorder.’ Our observation has been that, while it strikes all races and both genders, it is far more serious, long-lasting and difficult to treat in males. In medical parlance this is known as a ‘gender bias.’ This is unfortunate because, of course, gender usually lasts a lifetime. It is more and more clear to me that, unfortunately, so does CUD.

All children have to suffer through the ‘learning by experience’ misery that is part of the human condition. However, people with CUD have the additional challenge of not actually internalizing these lessons, finding themselves in a state of chronic surprise when things go--predictably to the rest of us--horribly wrong.  The symptoms showed up early in my son. He had trouble grasping the notion that it is not a good idea to walk one way while looking another.  As a consequence, his unusually large head was a phrenological paradise with lumps, bumps and bruises everywhere.  Finally sick of hearing the walls in the house shake due to another CUD collision (‘Oh geez, Rory’s walking again’) and of being suspected of forehead abuse, we resorted to covering his head at all times with a football helmet (seriously). 

I admit I sometimes contributed to the problem, albeit innocently, my own mild CUD apparently rearing its ugly head.  I mean what could possibly go wrong with giving a young boy with a limited grasp of consequences a chemistry set? On white carpet?  During the most boring months of winter? 

One incident led me to believe we were making some progress. Rory, who was about 6 or 7 years old, became interested in a baby rattle belonging to a visiting infant.  The rattle was attached to a suction cup and Rory was fascinated to discover that with a little spit and some force, you could get that suction cup to stick to just about anything.  He stuck it to walls, appliances, and furniture, noting the various stickiness factor of each.  Over the years, I had learned to recognize the look on his face that meant we were in trouble.  It was a “hmmm, I wonder what would happen if…?” look and the blankness behind his eyes made it clear that he was in a full CUD mode. As he sat next to the innocent infant and held the rattle aloft in one hand, I saw that look in his eyes and thought was ‘oh no, he’s going to try to stick it on the baby!’ I ran across the room just in time to hear a resounding whap and see the rattle bouncing noisily from his own forehead.  My relief that he had chosen to experiment on himself and not the baby was short-lived, however, because he was in serious distress when he figured out that, once removed, the rattle had left a large, red suction hickey on his forehead.  There was no disguising it with a football helmet this time. He was forced to wear the evidence of his severe CUD for all to see. 

As difficult as that was for him (his classmates nicknamed him “Bullseye,” a name that sticks--no pun intended--to this day) at least I had hope that his distress would reinforce the consequences of that action and break through the devastating barrier of CUD.  For a time, it seemed that that is exactly what happened.  He suffered from other CUD-related injuries (who could predict that doing pretend death rolls out of your friend’s slow moving vehicle could result in someone getting hurt?), but I thought we had at least crossed the ‘suction-related injuries’ hurdle. Which is why I was so surprised when Rory, now 23 and a college student, came into my office area the other day with a horrible rash on his face. Fearing he may have a serious illness, I asked him about the multiple reddish-purple bruises covering his right cheek, forehead and chin. 

“Oh, are they still there?” he said. 

 I felt my heart sink. “Rory, are what still there?”

 “Well, I was holding an empty pill bottle last night--you know, the ones that seem hard--and I noticed that if I squeezed it just right, I could get enough suction to make it stick to my hand.”

No, no, no! It couldn’t be. This was total relapse to age 7 CUD behavior. But I had to be brave for both of us, so I closed my eyes and asked what happened next.

 “So, I thought I should see if I could get it to stick to my face,” Rory explained, as if this was perfectly rational. 

“Rory,” I said, “I know you are aware of this at some level, but just as a reminder, you are 23 years old and just got an ‘A’ in astrophysics.” I felt it was important to establish his identity in case CUD-related denial had blinded him to basic behavioral standards for someone who is technically an adult. “Are you seriously telling me that it never occurred to you that you would end up with a face full of suction hickies?”

 “I guess I just never really thought about it,” he said.  And that is the real tragedy of CUD.

 We will continue to work with Rory’s disorder until a cure can be found, but in the meantime, it is important to raise awareness of this little understood condition.  After all, we are all subject to the consequences of untreated CUD. What else could explain the illogical decisions reached by policy makers, corporate titans and elected officials (who, it is worth noting, are overwhelming male and therefore subject to the more severe form of CUD). Unfortunately, CUD is usually a silent disorder--especially if you are fortunate enough to have handlers protecting you from the consequences of your ridiculous behavior. If suction hickies were a universal manifestation of CUD, we would no doubt be astounded at how serious this epidemic is among our ‘leaders.’ Just imagine…

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Sarah Palin: 2009 Campaign Photo? Yikes!

I am bothered, but not surprised, that for the most part the MSM seems to accept Palin’s dollar figure on the face of it. This is a woman who has been caught lying time after time, but they still parrot her ridiculous statements as if they came straight from the good Lord, himself.

After her resignation, polls showed that 7 in 10 Republicans would vote for her in 2012! When you visit news site forums, these mindless Palin-drones take over the comments section defending their idiot savant with the same sort of gusto they normally reserve for celebrating beer and Cheetos night. This is scary stuff. I don’t think Palin is a “joke.” I think she is a self-deluded narcissist (did you catch the ‘narcissistic rage’ when Andrea Mitchell dared to suggest that she needed to clarify her stream of consciousness explanation for resigning?) who represents lemming-like leadership in our first big step over the cliff into idiocracy. She is the quintessential malign personality (wrapped in a cutesy candy coating) that rises to power despite clear warning signs of unfitness.

Given the crystal clear evidence that she is not suited for any job that requires rational thinking, what will it take to get through to the public? It’s easy to make fun of her, but I think the MSM is discounting the rabid Palin-drones who are just angry enough and stupid enough to see this farce of a politician as the only person who can finally address and fix their myriad Fox News-inspired perceived grievances. I’m not laughing. I’m scared.

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Vitiligo (vit-a-lie-go), a condition affecting the melanin-related pigmentation of the skin, was cited as the reason for Michael Jackson's dramatic lightening over the decades.  Skeptics naturally assumed he was getting his skin bleached and had only latched onto vitiligo as a convenient excuse for his choice to 'deny' his Black heritage.  However, reports that have surfaced since his death indicate that his entire body was very, very white, which would be consistent with the form of vitiligo called NPV in which the pigment in the skin is universally affected.  Most sufferers of vitiligo (it affects all races--it's just more obvious in darker skins) get patchy skin. There is plenty of photographic evidence that Michael Jackson did indeed have patchy vitiligo for years prior to possibly developing the more advanced form of the disease. Some examples are posted here. More information from a reliable source can be found here.

Jackson is also rumored to have suffered from lupus, an autoimmune disorder frequently linked with vitiligo, so it is certainly possible that the 'weird' changes in skin color could have been nothing more than a recognized medical disorder. 

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Cable news networks have been pretty relentless in their coverage of the Michael Jackson death story since it broke over week ago. Granted, it was a major story and had shock value as well as pop culture value. However, it was truly non-stop coverage and critics have lambasted the skewed priorities and lack of journalistic ethics displayed by this sort of 'over the top' reporting.  I had to concede their point--until the Jackson story started to fade and the networks switched their focus to 'real' news. Here's a sampling:

Breaking News banner from CNN: Police in Houston are on a high-speed chase (and this is news, why?  How is this different than any other day in Houston or any major city?)

ABC feature story: Megan Fox Puts Foot in Mouth, Again. 

CBS and MSNBC both lead with news of Obama's trip to Russia, coupled with Debbie Rowe's decision not to attend the Jackson memorial. 

All in all, I think I preferred the inane babbling about Jackson over the ridiculous efforts to operate like real news outlets. 

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Sarah Palin's resignation from the governship of Alaska midway through her term has tongues wagging about the real reasons behind it. Her rambling, contradictory and self-deluded 18 minute announcement did nothing to clarify the real reasons, but in it she clearly painted herself as a sainted victim of the MSM without acknowledging her own contribution to the adversarial relationship she created with them. It is worth noting that this is the same woman who told Hilary Clinton to 'stop whining' about unfair treatment in the media.

Palin's enduring popularity is a testament to the fact that we have not progressed much with women's rights.  It is obscene that after decades of fighting for legitimacy, success as a woman still boils down to sex appeal. Palin's wink during the debates was an admission of defeat.  She was broadcasting to the world that skill, intellect, gravitas and just plain hard work simply do not work for women, but sexual playfulness and willingness to brand yourself a MILF (now a GILF) sure do. Now she has provided fodder for critics who contend that mothers simply can't manage motherhood and responsible careers.

I agree with commentators who sincerely hope her resignation means Palin is going away. I don't want to see her continue in the limelight even for entertainment value, though I suspect she will.  For professional women, Palin's behavior is just one more obstacle we have to overcome on the way to being treated as full and equal contributors to society.

UPDATE:  This is the best explanation I've seen for her resignation so far:

"Perhaps she's simply chosen this precious time to prepare for her inevitable 2012 presidential run by hunkering down and finally studying how to wink more effectively (and not like an epileptic who was recently exposed to a strobe light)."
Warren Holstein at the Huffington Post

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Did I Mention I'm a Lobbyist for the Health Insurance Industry?

It is with some despair that I watch the goings-on in the health care reform debate. I truly believe that this historical period is not only our best shot at real reform, but most likely our only shot, and it is enraging to watch the influence of the health insurance lobby, physician's lobby (AMA) and other powerful special interest groups frame the debate. Our current system of care amounts to passive eugenics, purposely weeding out the sick and allowing them to suffer and face untimely death because they are a 'drain' on society--or more accurately, a drain on health insurers bottom line. Isn't that exactly the same rationale eugenicists have used for decades to support their vile policies?  Tom Daschle narrowly avoided nomination as Secretary of Health and Human Services and I think we should count our blessings. His recent comments support opponents of a public option for health care reform expose his true motivation and a health industry lobbyist and demonstrate the conflict of interest that is poisoning the opportunity for real reform.

Open Letter to Tom Daschle:

This morning I took a call from a patient who is a member of the organization I work for. She has a 7-year-old son who is rapidly losing lung function and is heading for transplant if this disease progression can not be managed. Her physician ordered an inhaled drug, Pulmozyme, to help him get rid of excess secretions in his lungs and hopefully cut down on the nasty infections that are scarring his airways. Pulmozyme is a patent-protected drug with FDA approval to market. However, the bulk of the testing done on Pulmozyme was done in cystic fibrosis and the market approval was for that condition only. Because the evidence for efficacy of Pulmozyme only exists in cystic fibrosis, insurance companies often deny this drug to individuals with similar need, but a different diagnosis. The prescribed dose of Pulmozyme for this child costs $2,100 each month. Even with insurance coverage, the co-pay for Pulmozyme for this family would run $300 to $500 per month. Pulmozyme is one of seven medications this child takes and some of them are even more expensive. He does not qualify for Medicaid because he is not yet "sick enough." What exactly do you propose as a non-public option for people in this situation? They simply can't afford the medication, so their 'option' is to watch their son get sicker and finally succumb to symptoms that are treatable.

This is the reality on the ground. Over-priced drugs and therapies, niggling rules imposed by the insurance company to avoid having to pay for over-priced drugs and therapies and a dismissive attitude by society that assumes having insurance actually means you can afford health care. If this is the nightmare faced by those with insurance, imagine what is happening to those of us without. 

So, congratulations. By your comments endorsing the position of the Republicans opposed to a public option, you have just endorsed the continued misery of millions of vulnerable Americans who don’t nicely fit the actuarial models of the insurance industry.  As someone who currently can't get insured at any price because of a well-managed chronic illness, it disgusts me that--once again--the very people who created the problem are going to benefit most from the solution. I am tired of patiently waiting while people with no stake in the game--elected officials and others who are both wealthy and well-insured--debate whether I am deserving of health care at all and watch families fall into financial ruin as they try to secure care for their children. To allow the same industries that feel no remorse about decisions to deny necessary health care to certain people based on actuarial models--literally life and death decisions distilled to a simple calculus about impact on the bottom line-- more of a voice in this debate than American citizens is an outrage. As far as I’m concerned, you and others who oppose a public option are guilty of passive eugenics, sitting by while private industries decide which American citizen is entitled to care, knowing full well the current private insurance model leads to preventable illness and untimely death.  To assume these industries will suddenly become good actors, more concerned about American health and prosperity than their own greedy bottom line, is ridiculous.  To expect them to do so after watching the government cower under pressure from their lobbyists is obscene

It is clear that many people involved in this debate have no actual idea what is going on at the grassroots level. I have heard talking heads, including elected officials who should know better, suggest that the uninsured and underinsured ‘choose’ not to have coverage. That may be the case in a very small minority, but the vast majority of us either can’t get insurance due to a pre-existing condition or can’t afford the outrageous premiums. Under the current system, not only are you penalized for medical conditions over which you have no control, but you are doubly penalized for attempting to responsibly manage your health with your medical records serving as the basis for increased premiums or outright denials of coverage. It is legalized discrimination. To suggest that the average American, who these days is having trouble just holding on to his/her home, should find a spare $1,200 - $1,500 per month lying around for premiums, plus be able to foot the bill for co-pays, is just plain ignorant. The ‘option’ to pay for insurance (if you are lucky enough to be deemed insurable at all) that costs 1/3 to 1/2 or more of your total monthly income is no option; it’s a recipe for financial disaster.  Haven’t we had enough of that already?

Your suggested alternative, shifting the burden off the federal government and instead onto state and local governments that are already broke and have far fewer resources, only ensures that the goal of covering all American’s will fail. You must surely know this, so this plan is exposed for what it really is, a way to sustain the status quo with private industry actually calling the shots, while appearing to make an effort at reform. This is an insult to those of desperate for real reform.

Our elected leaders managed to overcome their differences and find a 'public option' for banks and other industries. It is about time they find their collective will to do the same for the American people. 

Michele Manion
Phoenix, Arizona

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