New complex genetic disabilities we have no answers for

By John Gilmore

Researchers led by a team at the Autism Spectrum Disorder Research Institute have identified a new psychiatric disorder that early numbers indicate is unusually concentrated among health care professionals, especially M.D.s. A wide variety of symptoms have been identified so far, most are related to cognitive difficulties in processing new information, fixed adherence to established routines, an inability to listen to people of perceived lower educational status, and an inability to recognize moral conflicts.

The new disorder is called Iatromoric Spectrum Disorder or ISD, sometimes “Iatromorism.” “Iatros” comes from the Greek for “doctor” as in “iatrogenic” and “moros” from the Greek for “fool” as in “sophomore,” a wise fool, and “moron,” a psychological term once used to describe people with an IQ from 51 to 70. A broad spectrum of severity from almost complete debilitation to socially awkward behavior characterizes the disorder.

Psychiatric disorders associated with a profession are unusual but not unprecedented. “Mad Hatters” disease was once a common disorder among hat makers who worked with beaver pelts. The newly identified condition will be included in the next edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM), the “bible” of disorders used by American psychiatrists, due for release in 2010. The new disorder will also be included in the International Statistical Classification of Diseases and Health Problems (ICD) which will provide an identification code. Inclusion in the ICD is a key for a recognized diagnosis and possible insurance payment for diagnosis and treatment.

Symptoms
As yet there are no recognized biological markers associated with Iatromoric Spectrum Disorder but it is believed to be genetic in origin. Diagnosis is made by observing six or more symptoms from the official list.

Physicians suffering from ISD can remain functional in day-to-day life and, in fact, the more severe forms of ISD are associated with professional success. Research soon to be published in a leading peer-reviewed journal shows a higher incidence of ISD among leaders of medical institutions than rank-and-file physicians.
As a spectrum disorder, ISD presents with wide range of severity. Patients with four or fewer symptoms are considered to have what is called “High-Functioning ISD” also known as “Bettelheim’s Syndrome.” Bruno Bettelheim was a pioneer in the treatment of autism disorders and was the leading proponent of the “Refrigerator Mother” theory that autism is caused by emotionally distant parents, especially mothers.
The American Psychiatric Association has launched a national program called “Know the Signs.” Six or more symptoms are considered indicative of Iatromorism:

• Difficulty recognizing patterns.
A key indicator. Physicians with ISD, for example, have difficulty recognizing that a change in incidence of a disease from 1 in 10,000 to 1 in 150 is not a curiosity but a cause for alarm.

• Refusal to consider inconvenient hypotheses.
People with ISD cannot accept that physical symptoms such as gastrointestinal disorders, immune disfunction and other physical symptoms may be an integral part of autism.

• Difficulty associating cause and effect.
ISD sufferers have difficulty associating events that are followed by unexpected results. Administering a shot that is immediately followed by regression into autism can not be associated in anyway in the ISD worldview.

• Disregard for contra-indications.
Contra-indications are frequently ignored. For example, continuing with DPT vaccinations even though a child cries for 10 hours following an initial DPT which is grounds for discontinuing the series.

• Selective acceptance of information.
Information that does not conform to orthodox ideas, especially if the source is a parent of a sick child, is rejected. Initial concerns that a child may not be developing normally are automatically placated. Indicators that autism symptoms may be improved by a change in diet or supplements is unacceptable.

• Promotion of untested explanations for troubling evidence.

Old fathers, mothers drinking alcohol, children watching too much television, all cause autism in the ISD world view. And the growth in the autism can be explained, without supporting evidence, to changes in diagnostic criteria and better case finding.

• Speaking authoritatively with no information.
The idea of the “Refrigerator Mother” supported orthodox Freudian ideas and was held by psychiatrists up through the 1970s. This convenient hypothesis, unfortunately, never had any factual basis or data to support it. Nonetheless, it was the dominant theory for the cause of autism for almost 40 years. Bettelheim, its main proponent, was later shown to have faked his résumé and had no medical training.

• Unquestioning acceptance of information from demonstrably unreliable institutions.
Despite scores of examples of deliberate distortion, studies from pharmaceutical firms and institutions that are financed by pharmaceutical companies are automatically considered to be honest and reliable by physicians with ISD.

• Inability to distinguish conflicts of interest.
People with ISD do not perceive that members of powerful medical institutions or authoritative federal medical boards influencing decisions in which they have direct financial and professional interests presents a problem.

• Preference for dogma over observed reality.
Physicians with ISD will readily accept new information when the source is a higher body with the authority to decree medical dogma. Information at odds with dogma is simply rejected. For example, despite hundreds of thousands of reports of children developing normally for a time, often for several years, and then regressing into autism, “regression” was not “discovered” or officially accepted until 2005.

• Inability to admit error.
ISD sufferers in their own minds never make errors.

Treatment
No treatments are known. The FDA has fast-tracked research into using atypical anti-psychotics like risperdone (Risperdal), olanzapine (Zyprexa) and ziprasidone (Seroquel) to manage the symptoms of ISD. Research into intensive behavioral modification programs has started but results as of yet are inconclusive. The National Institute of Health recently announced a $46 million five-year study to look for the “ISD gene.” Genetic research holds the promise in the long-run of identifying ISD carriers and avoiding cases through genetic counseling.

What you can do?
People with ISD are ill and deserve the same level of care and attention as others in need of medical attention. Learn the warning signs, and if you see indicators in your physician direct them to the newly formed ISD Society who can direct them to the small but growing number of ISD treatment centers. More research is sorely needed and the ISD Society is organizing fund-raising walks. Please support these efforts in your area.

ANALYZING HANNAH POLING VS. HHS

By John Gilmore

The government is outright lying about the Hannah Poling vaccine court case that recently went public. They invented a whole new theory of autism causation just for this one case to get themselves off the hook. The government’s explanation of the decision is so blatantly absurd that even the corporate media has noted the contradiction between the government conceding the case yet at the same time claiming vaccines have nothing to do with Hannah’s autism.

Hannah Poling is a 9-year-old girl who, at her 18 month check-up, received nine vaccines in five injections. Before the injections she was a healthy toddler who had a vocabulary of 30 words and reached her development milestones ahead of schedule. She immediately reacted to the vaccines with a high fever, a rash, and inconsolable crying. She began to lose speech and failed to respond to her parents. Eventually she received a diagnosis of autism, which she still has.

Hannah’s parents filed a claim in the National Vaccine Injury Program, or “vaccine court.” Jon Poling, Hannah’s father, is a neurologist who did his residency at Johns Hopkins. He also has a Ph.D. in biophysics. Hannah’s mother is a nurse and an attorney.

The 5,000 autism claims in the vaccine court have been lumped together into a group called the Autism Omnibus Proceeding. Hannah’s case was selected as one of nine test cases to evaluate the primary arguments underlying most of the other claims. The surprise is that in Hannah’s case the government “conceded,” or gave up without a fight. Litigation is like poker, you fold when you know you can’t win.

But the government had a big problem: how to concede without admitting that vaccines can cause autism. That would be the end of the vaccine industry as we know it, with a great many careers dragged down with it. The answer was obvious: Lie their faces off.
The first lie is the government’s claim that Hannah had an “underlying” mitochondrial disorder, you may remember from high school biology that mitochondria are the powerhouses inside cells. She has mitochondrial disorder now, but there is nothing in Hannah’s medical records or her parents’ observations of her that indicate that she had any symptoms of mitochondrial disorder. Nor does mainstream medicine accept mitochondrial disorder as a cause of autism. I am not suggesting it doesn’t or couldn’t, but we need to recognize that the government is perfectly comfortable inventing entire new theories of autism causation if they think it could get them off the hook.

The Department of Justice, which represents the government in the vaccine court, has come up with a new type of logic that should be very useful for criminal defense lawyers across the country. According to the logic in the Poling case, a murderer could argue that he did in fact shoot a victim who subsequently bled to death, but the bleeding and the gun shot wound were merely coincidental and the victim had a bleeding disorder anyway (for which there is no need to provide evidence that the disorder existed prior to the victim’s demise).

The government won’t even admit that Hannah Poling has autism; they prefer to say Hannah has “features of autism spectrum disorder,” as if there is a difference. To set the record straight, Hannah has full-blown DSM-IVR autism.

But let’s suppose that the government’s spin on the Polings case is actually true. Then it is reasonable to think that children with mitochondrial disorders face a significant threat from routine administration of vaccines. Have we heard anything from the CDC or the American Academy of Pediatrics that all children should be screened for mitochondrial disorders prior to giving vaccines?

Wouldn’t this be the obvious, logical and prudent course of action if the government really believes their own statements and want to prevent autism from this new cause discovered by Department of Justice lawyers?

No doubt such a measure would be expensive, but we have spent billions preparing for a bird flu pandemic (remember?) that has yet to kill even a single bird on the North American continent. But there is no suggestion that the government will implement a mitochondrial screening plan.

If Hannah Poling’s autism wasn’t caused by vaccines, then why is the vaccine court about to award the Polings a large sum of money? Damages haven’t been decided yet but the presumption is that Hannah will get a sufficient sum to provide her with a modest level of care for the remainder of her life. No great windfall is pending, punitive damages are limited to $250,000. The Special Master (judge) in vaccine court cannot award any damages unless the evidence indicates that an injury occurred. So if she doesn’t have autism and the vaccines didn’t cause it, why is she getting paid?

This issue is far from over. Once people have time to really think about the absurdities the government is putting forward, many questions will be asked that the government will not be able to answer. At some point we will probably see Congress begin to ask questions the CDC and the vaccine industry desperately want us to ignore. Stay tuned.

By John Gilmore

It’s time to start thinking seriously about who is going to be the next president. Even though we still have almost a year before the general election, there is barely a month until the whole thing kicks off with the Iowa caucuses, and the candidates of both major parties will probably be decided five weeks later on February 5th when 20 states hold their primaries.

Most of us come to the election with some type of allegiance as a Democrat, Republican or independent. I frequently read intense online arguments between people in the autism community that the Republicans did this or the Democrats will do that.

We as a nation are facing huge issues: this endless war and the tremendous number of lives lost and amount of money spent pursuing it, the ongoing decline of the quality of healthcare and the accompanying skyrocketing costs, environmental degradation and on and on. I am almost 50, and I have been a political junkie all my life. I worked on my first political campaign in 1972 when the overwhelming issue was how to end the war in Vietnam. I don’t think there has ever been a more important election than this one in my lifetime.

As a parent of a child with autism I cannot afford the easy choice of defaulting to party allegiances. We are no longer Democrats or Republicans. We are now, whether we want to be or not, members of the Autism Party because everything about autism is political. How it is defined? How it is diagnosed? How it is treated? Who is allowed to treat it? Whose opinion counts? Who is ignored? Where do the negligible research dollars go? What is paid for and by whom?

All of these crucial questions have enormous impact on our families’ day-to-day lives and are key to our children’s futures, and all of them are political issues. Any parent who is serious about providing the best possible life for their child with autism must be engaged in the issues and the political process to the extent that the daily demands of our lives allow.

Right now the presidential election is wide open; the leaders in the polls today very well could be distant memories by March. None of the candidates have much of a track record on autism issues. Most of them probably don’t have positions on the issues that are most important to our kids. As much as two or three percent of Americans are directly related to someone who has autism, and the last two presidential elections were decided by less than 2 percent of the vote. An astute candidate would realize that an organized, vocal autism voting bloc should not be ignored.

Several organizations in the past have prepared candidates questionnaires to compel presidential wannabes to at least have a staffer think about our issues and commit something to paper. It provides us with leverage later on if they get elected, and provides a way to mobilize our community to get the candidates attention. A-CHAMP has already begun an email campaign to get candidates to respond to a questionnaire, and I am sure other questionnaires may be forthcoming from other organizations.

Here are a few questions I would like to ask the candidates:

Education. The federal government has never provided local schools districts with more than 40 percent of the money that is needed to meet federal special education mandates identified in the Individuals with Disabilities Education Act (IDEA). If schools in your district are inadequate, or if you are hearing more complaints about the cost of special education, this is a primary reason why. Overall, children with disabilities are short-changed by $28 billion per year. I would like to know exactly what each candidate intends to do to keep the broken educational promises to kids with disabilities.

Research Funding. The much ballyhooed Combating Autism Act is a year old and has yet to be funded. Even if it is fully funded, the total amount would be less than $200 million. That’s from an American economy of more than $13 trillion dollars, or about 66 cents for every resident of the United States. Two hundred million dollars is the annual payroll for the New York Yankees or about 4 months worth of Blackwater’s federal contracts. There are now more people with autism in the United States than people with HIV/AIDS, but we spend more than $3 billion on AIDS research even though we know the cause of AIDS and have highly effective treatments and prevention methods. Given the huge increase in the number of children with autism, even if the Combating Autism Act was fully funded, we would still be spending less per person diagnosed with autism than we were in 2001. I would like to know what the candidates think of current levels of spending on autism research and whether they think that we should be spending as much on autism research as we do on AIDS research.

Research Subjects. In addition to being insultingly stingy, the Combating Autism Act prohibits any research into the possible role of environmental factors and explicitly forbids research on any connection between vaccines and autism. Despite more than 10 years of genetic research failing to identify a single gene or combination of genes that has any predictive value in causing autism the Federal Government has decided that autism is a purely genetic disorder. I would like to know whether the candidates have also concluded that autism is a purely genetic disorder and whether they think we should continue to ignore the role of environmental factors and vaccines as possible causes of autism.

Insurance Coverage. A common experience of families dealing with autism is to have basic medical services denied insurance coverage because of a child’s autism diagnosis. It has happened to me repeatedly. Some families are dropped from plans completely once a family member gets an autism diagnosis. And other families are forced to bear the entire cost for behavioral interventions that we are told are the only therapies that are demonstrated to help our kids. The insurance companies take our money and provide nothing in return. Parents have been successful in some states, most recently Texas and South Carolina, to force some insurance companies to pay for treatments. But insurance companies are regulated by a complex web of state and federal laws. And federal reform is necessary to stop the discrimination.

I would like to know how and when the candidates will reform federal insurance laws to prohibit discrimination against people with autism and their families and cover necessary therapies.

Corruption and Incompetence at the CDC. Under Director Julie Gerberding, MD, MPH, The Centers for Disease Control and Prevention, America’s health watchdog has become an example of bureaucracy at its worst. Gross examples of waste and mismanagement have been revealed in an investigation by Sen. Tom Coburn, MD (R-Okla.). As was recently revealed in the press, policy statements from the CDC are vetted by the White House for political correctness regardless of what the science may indicate. Despite a tripling in the number of children with an autism diagnosis since 2001 the CDC still claims they can’t say if there is an epidemic or not because they simply refuse to do the epidemiology. The CDC “lost” the data sets for the one and only study done on the effect of thimerosal on autism. CDC is rife with conflicts of interest in regards to assuring the safety and efficacy of vaccines and maximizing the use of vaccines. It’s advisory boards are filled with people with direct financial ties to the firms they are supposed to regulate in the public interest. I would like to know what the candidates intend to do to clean up the mess at the CDC and restore confidence that the agency is doing honest research into the scope, causes and prevention of autism commensurate with the public health disaster we are dealing with.

If you would like to ask the candidates these questions too, A-CHAMP has an online tool at www.a-champ.org that makes it easy to send emails to all the campaign headquarters of every candidate running for president in the two major parties. The more people who participate the more likely it is that we will get action from candidates. We have nothing to lose except a few minutes time and potentially a great deal to gain.

By John Gilmore

That’s a question about autism no one seems to want to answer. Some would say that whenever anyone near and dear to you becomes sick, that’s an epidemic. If you are reading this column you probably have an autism epidemic of at least one in your home. Epidemiologists say that an “epidemic” is an increase in the incidence of a disease. And we have certainly seen a huge increase in the incidence of autism among American children, from 1 or 2 per 10,000 20 years go to more than 1 in 150 today according to the Centers for Disease Control and Prevention (CDC). Despite these staggering increases nobody with power in the twilight world of autism will use the phrase “autism epidemic.”

Prominent autism organizations won’t say it, the Food and Drug Administration won’t say it, the herd of candidates for President haven’t said it, and the last group in the world to say those dreaded, but obvious words, is the CDC, the extremely well-funded federal agency that is supposed to detect, stop and rollback epidemics.
Epidemics are serious. They are frightening. Epidemics demand action from government, public health officials, physicians and leading medical institutions. Epidemics are expensive. What’s most frightening about epidemics, at least for those in comfortable government bureaucracies, is that it requires those in power to act responsibly and produce results.

Public health authorities can certainly generate a lot of activity for issues they think are important. The CDC has been banging the drum about avian flu and spending billions even though not a single bird, much less a human being, has died of the disease on the North American continent.

What do we get from the authorities responsible for fighting the autism epidemic? Red herrings, untested guesses, rationalizations, speculation—in short: excuses. Anything but the serious, difficult and expensive work that would give us hard information essential for intelligent decisions and appropriate investment in research into the causes and potential cures for of autism. The state of research into the causes of autism is so dismal that we can’t even say with confidence that we know it isn’t a communicable disease. The powers-that-be say this, but they have no proof.
In past few months the intellectual gyrations needed to deny the epidemic would make Orwell proud. The New York Times recently quoted Dr. Fred R. Volkmar, director of the Child Study Center at Yale University School of Medicine, who said, “It appears that the rates are unchanged over the past 20 years or so, but it is important to track these numbers.”

There are lots of excuses used to avoid saying we are in the middle of a public health disaster. A frequently used excuse is to attribute the rise to better case finding, meaning we are better now than in the past at finding and diagnosing people with autism. While this is probably true for people with Asperger’s and milder forms of this disorder, people with full-blown autism comprise about half of all the cases. So better case finding, in short, means that until recently nobody noticed the 8-year-old who couldn’t talk banging his head and flapping his hands in the corner.
It is also frequently suggested that people with autism now would have been diagnosed with mental retardation in the past, and the overall decreasing number of people with a mental retardation diagnosis is cited as evidence. In the State of New York the number of students with a diagnosis of mental retardation has indeed decreased during the past ten years by about 3,000. At the same time, however, the number of students with diagnoses of learning disabilities, speech and language disorders and autism has exploded. Autism cases alone have increased by 13,000. So in New York, at least, diagnostic substitution can’t explain the increase in autism. Large and significant studies from the State of California, John Hopkins and the University of Minnesota came to similar conclusions.

The third big excuse is that changes in the checklists used to diagnose autism make comparison of the numbers now and in the past impossible because we define autism differently now. They say we are comparing pears to mangos. The argument is also made that the range of symptoms that fall under the autism umbrella is wider than in the past.

It is true that the diagnostic criteria used in the United States were changed several times in the 70s and 80s, but they have been unchanged since 1994 when the Diagnostic and Statistical Manual IV-Revised, the definitive text used for diagnosing autism, was issued by the American Psychiatric Association (APA). And the DSM-IVR defined autism more narrowly than the preceding edition. Any studies done in the past 13 years would have used the DSM-IVR criteria and during that period we have seen an explosion in the number of people with autism.

The next edition of the DSM is slated for 2010. Any changes to the diagnostic criteria for autism would make sound epidemiology all that more difficult. The autism community needs to pay close attention to what the APA does and make sure that no changes are made to the diagnostic criteria for autism, or we could be waiting for yet another 20 years while the bureaucrats dither and debate.

We can’t wait for the CDC to measure the obvious, but without solid epidemiology showing that the cases have sky rocketed we will not be able to get the attention and investment needed to fight the epidemic. As usual, parents of people with autism will need to make this happen.

Conducting a full census of adults will yield crucial information to determine the extent of the epidemic. If the count shows that there are indeed far more 8-year-olds with autism than 40-year-olds that would indicate looking for environmental rather than a genetic cause, and could lead to a much more efficient use of available research funds.

Autism United, a coalition of autism organizations and service providers, has launched a private initiative on Long Island, N.Y., to count every individual appropriately diagnosed with autism.

Studies like these will bypass the roadblocks at the CDC and provide the solid information we need. It is unfortunate that we have to take on this additional responsibility, but when faced with bureaucracies resolutely determined not to do their jobs and deal with reality we have no choice.