Tuesday, September 28, 2010

Places Causing Stress

There are places that leave me anxious and stressed for days or even weeks. I can't explain it, but some settings leave me unable to gather my thoughts, senses, or emotions. I remain on "overload" and miserable until something several times more comforting can offset the anxiety.

The main university campus makes me sick. Literally. I hate the campus and everything it represents to me. One visit of a few hours leaves me unable to focus and function properly for at least three days, and usually more.

While the university is the most extreme example of a place making me sick, there are also businesses I can't enter or support. The nearby Target store is one I will not visit. It's a disgusting place with horrible employees. Maybe that will change, but I'm not going to go back to a store just to find out if they've mopped the floors. (I've noticed two stores in the same chain can be opposites. I love the Walmart in a nearby suburb, while the urban Walmart is a dump rivaling the Target.)

Some restaurants are on my "can't visit" list. Dirty dishes are the primary cause. You can't wash plates or flatware? I'm not coming back. If I have to beg for water or a tea refill, I'm not coming back. A filthy kitchen? Unclean bathrooms? I'm gone as a customer.

The university bothers me because the location is noisy, dirty, and disgusting. Add to this what I considered mediocre service, poor support, and horrific experiences with some people, there's no reason to like the place. You pay for services at a university, even if they don't like to consider it a business. It was a bad business I don't wish to support.

There are good employees at bad businesses, but that's not enough. If anything, it is a shame that great people at the university are so overshadowed in my mind by the bad experiences.

I do all I can to avoid the university and refuse to support it in any way. It needs substantial changes. Even then, I can't erase the negatives from my memories.

Thursday, September 16, 2010

Am I Autistic

My doctoral dissertation included a chapter on the definitions of "autism." I located regional differences in criteria and these differences correlate to diagnostic "clusters" where the more liberal diagnostic traditions are emerging.

Some clinicians call for a broad application of "autismness" that scales from "zero autismness" to "classic autism." This would result in a lot of autism diagnoses.

Others, especially researchers, cling to the DSM-III tradition that autism cannot be comorbid with a known physical diagnosis. This was explained to me in this way: if you know the cause, you can research and treat accordingly. Things we do know to be "medical" are moved out of the DSM on a regular basis. This is a logical strategy for categorizing and treating conditions. You wouldn't study Fragile X the same way you might neurotoxin exposure.

I fall into the "if you know it, classify it" camp. If I know the cause of my condition (and I do), then I should receive medical and educational supports accordingly. "Autism" by itself would be too vague. I have a left frontal lobe incursion from a complicated delivery exacerbated by some other issues. In Minnesota, I am diagnosed with HFA ("autism"), but in California my physical injuries and their expressions were the only diagnoses.

I compare this to "cancer." The term by itself, while somewhat helpful, tells a physician little. However, if we clarify the diagnosis of cancer to the specific type, it can be appropriately studied and (hopefully) treated. "Cancer" is too broad to be medically useful, just as "autism" is often too broad to help determine specific research needed and treatment strategies.

For clarification, my specialty is language comprehension and educational strategies. My research was both on the rhetoric of autism diagnostics and how to best address the language development of students with autism; many of us struggle with the "oddities" of language.

Nothing is odder than being "autistic" in Minnesota but not in my native California. It is one reason I do doubt the label's usefulness except in the most general applications.

Wednesday, September 15, 2010

Vaccine Studies

On the tail of revelations regarding the settlement agreed to by the Vaccine Court in the case of Hannah Poling, now there are more studies showing there appears to be no statistical correlation between certain vaccines and autism. The public is certain to view these as contradictory reports because the Poling case has been reported so badly in the media and online.

Thimerosal in vaccines did not cause an autism epidemic.

The study was released online Sept. 13 in advance of publication in the October print issue of Pediatrics.

Questions and answers with the thimerosal-autism study author.

From the University of Pennsylvania site MedPage Today:

The case-control study, of 256 children with autism spectrum disorders and 752 age- and sex-matched healthy controls, found that higher-than-average exposures to ethylmercury were, if anything, less common in kids with autism compared with healthy kids, reported Frank DeStefano, MD, MPH, of the CDC's Immunization Safety Office in Atlanta, and colleagues.

The research team found the following odds ratios for autism spectrum disorders associated with increases in ethylmercury exposure of two standard deviations, after adjusting for numerous potential confounders such as birthweight and maternal age:

• Prenatal exposure: OR 1.12 (95% CI 0.83 to 1.51)
• Exposure from birth to one month of age: OR 0.88 (95% CI 0.62 to 1.26)
• Exposure from birth to seven months: OR 0.60 (95% CI 0.36 to 0.99)
• Exposure from birth to 20 months: OR 0.60 (95% CI 0.32 to 0.97)

Noting that increased ethylmercury exposure in the two longer postnatal periods actually appeared to decrease the risk of three autism spectrum disorder outcomes, DeStefano and colleagues wrote that they were "not aware of a biological mechanism that would lead to this result."

There is always the slim and real potential for harm from almost anything. To state that "vaccines do not cause autism" is a blanket generalization based on the best available statistical evidence. To be constantly detailed and precise would make communication nearly impossible.

There are nutrition packs delivered to places suffering famine and disasters. The main ingredient is peanut butter. I couldn't even say "Peanut butter is one way to prevent malnutrition" because I'd need to add the precise number of people likely to experience allergies.

The odds that vaccines will harm someone are truly miniscule. No statistical model shows vaccinations correlate directly with autism. So, it is reasonable to give a blanket statement. It would be awkward to state the precise risk analysis for everything in life, and absurd.

Exercise is good for most people. It can also cause injury. That parallel is that we have detailed ways to exercise wisely and we also have designed vaccine protocols. But, people who do not trust medicine will never trust researchers… no matter what.

Monday, September 13, 2010

Vaccine Court Confusion

The Hannah Poling news reporting is analyzed at Left Brain / Right Brain. Specifically, LBRB looks at the coverage from CBS reporter Sharyl Attkisson:

Sharyl Attkisson blogs the Hannah Poling settlement.

The reporting is misleading, but the issue is so complex I cannot fault CBS or the reporter entirely. The 2007 decision to settle the claim by the Poling family that vaccinations harmed their daughter was a reasonable choice -- the case would have been complex and likely to end in the same confusion regardless of any award.

The Poling case was filed in 2002 and the decision to settle without a ruling was made in 2007. The reasons for settling the case were logical: Hannah Poling's underlying condition was exacerbated by a fever. Though we can never know if a vaccine was or was not the cause of the fever, the "tables" used in such cases assume a potential cause within certain timespans. In other words, if you get ill within X days of a vaccine, you do not need to prove the vaccine caused the illness.

The fever caused swelling, encephalopathy, and exacerbated a mitochondrial condition.

There is no way, none, to know if the fever was or was not caused by a vaccine, but the federal guidelines suggest settlement in such "table illness" cases. This is one of the rare instances in our legal system in which you assume causation and responsibility without reasonable certainty. Why? Because some people do have reactions to vaccines.

The vaccine injury list is online. See the National Vaccine Injury Compensation Program: NVICP Table of injuries/conditions that are presumed to be caused by vaccines.

There was no "winning" in the Poling case, it was a settlement. That settlement is paid indirectly through the NVICP, so the choice to settle was made by the HRSA / HHS of the United States, not the vaccine manufacturers. It was a choice based on the notion that, though doctors violated protocols, it would be nearly impossible to prove or disprove causation. Often, very often, settling a case is easier.

However, NVICP is a special creature in our legal system. It begins with the presumption of cause which is not the norm in most U.S. legal structures. You begin with the vaccine as "cause" by default. This leaves the NVICP, as directed by the law creating the "vaccine court," with the mandate to settle most cases that fit within the table for compensation.

There is no way, none, to prove or not, that a fever was caused by the vaccine. However, the legal mandate of the NVICP is to assume the vaccine contributed and settle the case.

The NVICP settlements are all called "concessions." The specific terms used are: conceded settlements, litigative risk conceded settlements, and entitlement decisions.

The terms are defined and used according to the 2008 meeting of the NVICP members:

"The majority of cases, however, are to be compensated by settlement. By settlement, the NVICP board means litigative risk concession settlements. That is where the petitioners maintain that they are entitled to compensation and the Government maintains that they are not. However, the parties agree that the case should be settled without resorting to a decision through litigation."

It is a legal term. Once again, we see how language specific to a field causes confusion.

Sunday, September 12, 2010

Campus = Anxiety

I haven't felt well since Thursday, when I had to make a trip to the university campus. I dislike the university and everything it represents to me. The anxiety and stress of being on campus leave me unable to relax and think clearly for days at a time.

My physical and emotional response to campus are too much to handle. I lose days of productivity. The reaction I have to campus raises a number of questions about what I should do or can do in the future.

I know I have two more campus trips this year, at least. One for an eye appointment and one to speak to a class about writing. Neither trip will be easy and I anticipate losing two or three days after each trip to campus.

Also, this week we had to confront the reality of student loans. It's a lot of debt, for a degree that causes my stomach to knot and head to ache when I think about the university. The diploma itself is somewhere downstairs. I never want to see it again. The university was a lousy experience that I'll be paying for until I'm over 60. Seriously. That's sickening.

I tell myself that if I keep writing, I'll have sufficient success that I will be able to teach what I want, where I want. Getting out of here is essential to my well-being.

Friday, September 10, 2010

The Amish Question, Again

I encountered the question of the Amish and autism again today. Yes, the Amish do have autism in their communities and yes they do vaccinate, but at lower rates than most groups.

The Amish do vaccinate. The old Amish communities have a lower rate than other communities, but the rates are steady in most communities. There are, however, almost a dozen "Amish" types, from those speaking a form of German to those that trade with "English" neighbors and are active in local counties while still living within their own village.
About 70% of the Amish in Lancaster County do, indeed, vaccinate. 
Immunization can be especially low among conservative groups, with only 6% of Swartentruber Amish participating, compared to 63% of the overall Amish population and 85% of the non-Amish population, according to a 1984 study (Paradox, Hurst/McConnell).
The German-speaking Amish do have autism, at a rate of approximately 1:250 to 1:200, which is lower than the national average, but oddly close to the rates in other parts of rural PA, OH, and WV. So, that leads to other questions about clusters of autism and why some areas have substantially lower diagnostic rates -- with or without vaccination.

Monday, September 6, 2010

The Unexpected Twist

I have applied for a dozen 2011-12 university appointments already, not yet a week into September. After last year's job hunt, I decided to narrow my search by location and specialty. When creating a "job search criteria" I omitted autism and focused on literacy and new media opportunities.

This weekend, a job opening appeared that caused me to reconsider a judgment I had expressed several times over the last year. I had stated, emphatically, I would avoid seeking autism-related research posts. Autism research is often the target of vitriolic rhetoric, even threats against researchers. Seeking other posts seemed wise, considering the heated debates around autism.

A major research university has a tenure-track opening that is associated with a leading autism research institute. The post reflects the topics I explored as a graduate student -- the text of the announcement could be used to introduce parts of my dissertation.

I decided to apply for the post, knowing that if I were to earn the position it would cause some consternation among a select group of activists. However, it is also the right thing to do. It is a post from which I could do a lot of good for students with autism. The right thing to do is to apply and see if the university agrees with me that I would bring a unique and valuable perspective to the research.

Plus, it is in a great location.