Working the system

I just left a comment over at Michael Cornwall’s Mad in America blog post. In my comment I linked to an excellent article in the Los Angeles Times about the reasons behind the vast surge in the autism diagnosis.

The LA Times article provides plausible reasons for the jump in autism rates that are not what meets the eye. According to the author of the article, autism has boomed in large part because parents want access to state funded services, and they talk amongst themselves about how to work the system to their advantage.

Three-year-old Benjamin was nothing like the severely impaired children Bailey had seen in clinic waiting rooms. But he didn’t speak much, was mesmerized by ceiling fans and liked to be left alone.

On the day of his evaluation by specialists from the L.A. Unified School District, Bailey purposely didn’t feed him breakfast. “I wanted him to look as bad as possible,” she recalled. “It’s not like he didn’t deserve services. I just wanted to stack the odds in our favor.”

It worked. Benjamin threw a tantrum. Over the next three years, the district paid for speech therapy, motor skills training and the attention of a one-on-one aide throughout the school day.

….. Peter Bearman, a sociologist at Columbia University, has demonstrated how such social forces are driving autism rates.

Analyzing state data, he identified a 386-square-mile area centered in West Hollywood that consistently produced three times as many autism cases as would be expected from birth rates.

Affluence helped set the area apart. But delving deeper, Bearman detected a more surprising pattern that existed across the state: Rich or poor, children living near somebody with autism were more likely to have the diagnosis themselves.

Living within 250 meters boosted the chances by 42%, compared to living between 500 and 1,000 meters away.

The reason, his analysis suggested, was simple: People talk.

They talk about how to recognize autism, which doctors to see, how to navigate the bureaucracies to secure services. They talk more if they live next door or visit the same parks, or if their children go to the same preschool.

The influence of neighbors alone accounts for 16% of the growth of autism cases in the state developmental system between 2000 and 2005, Bearman estimated.

In other words, autism is not contagious, but the diagnosis is.

I thought about posting the L.A. Times article when it appeared in December 2011, but decided not to at the time. I try to stick to the knitting on my blog, meaning I stick to schizophrenia as much as possible, and weigh the pros and cons of posting information about other diagnoses, even though, there is much in common between many mental health diagnoses. I decided to post the link today because both the Cornwall article and the L.A. Times article are excellent contributions to our growing understanding of how social factors shape trends in mental health diagnoses diagnoses.

Cornwall writes:
When I-Ward closed I was transferred to an adult clinic as a therapist for about 3 years until the bio-psychiatry, big pharma agenda made possible by NAMI testimony got the statewide Bronzon legislation passed. That law said that so-called severely and persistently mentally ill adults should be given priority for the allocation of adult services that are funded by the state and federal government.

It was supported by bio-psychiatry claims based on their incurable brain disease model that asserted that consumers were best served to be maintained by medication and case management. The law didn’t say therapy had to be eliminated, but the statewide cowardly mental health director’s association saw the handwriting on the wall and decided to announce the wisdom of eliminating therapy ASAP to placate NAMI, and the growing power of Psychiatry in every county system.

Peter Breggin on the hazards of psychiatric diagnosis

I’ve extracted three key points from Dr. Peter Breggin’s Huffington Post blog. on the hazards of psychiatric diagnoses. Each one, except for “medication spellbinding” as Breggin terms it, speaks to my own experience. And the reason that medication spellbinding doesn’t apply in my son’s and my experience is because I sensed that the medication fairy dust fell on the psychiatrists’ prescribing the drugs. They attributed all kinds of benefits to things I didn’t see at all. Their judgement was impaired, not mine, but that, of course, was a no win point of view for me, because I had already ceded power and authority into the hands of health professionals. On Breggin’s third key point below, try as I may to get people to look deep inside their own lives in order to heal their relative, many people just assume that I’m just a mother basher who is determined to push psychiatry back to the bad old days.

Psychiatric diagnoses take power and authority over your life, and the lives of your children, out of your hands. They place that power and authority in the hands of health professionals. Often it takes but a few minutes in an office to transform you or your child from a complex human being into a product on the psychiatric assembly line–and endless assembly line that can lead to a ruinous lifetime.

Perhaps worst of all, these diagnoses almost inevitably lead to the prescription of psychiatric medication to you or your child. Psychiatric drugs are toxins to the brain; they work by disabling the brain. None of them cure biochemical imbalances and all of them, every single one of them, cause severe biochemical imbalances in the brain. The adverse effects of these drugs on the brain and mind are stunning. In my recent scientific books and articles, including Medication Madness, I have demonstrated they cause medication spellbinding. Spellbound by psychoactive drugs we cannot adequately judge the impairments they create in our brain and too often we mistakenly feel “improved” when in fact our feelings have been dulled or artificially jacked up, and our judgment about ourselves and our lives have been impaired.

But something more subtle occurs when we accept a psychiatric diagnosis for ourselves or a loved one. We lose empathy for ourselves and our loved one. Instead of learning about and identifying with the sources of our emotional pain and suffering, and our failures in life, we ignore our real lives and explain ourselves away with the diagnosis. To understand ourselves or anyone else, to help ourselves or anyone else, we must care about the details of the life before us.
Read the rest here

The placebo effect and the diagnosis effect

There is an article in the Dec. 19 edition of The New Yorker magazine about how the placebo effect is gaining new found respectability. The Power of Nothing: Could studying the placebo effect change the way we think about medicine? The subject of the article, Ted Kaptchuk, Director of the Program in Placebo Studies and the Therapeutic Encounter at Harvard’s Beth Israel Medical Center, believes that if the patient gets better, not because of a drug, but due to the placebo effect, shouldn’t the placebo be considered a useful took in the medical tool kit, as useful as any drug?

The article states that simply believing in the treatment can be as effective as the treatment itself. In several recent studies, placebos have performed as well as drugs that Americans spend millions of dollars on each year.

The New Yorker article started me thinking about how the placebo effect, which we all tend to positively associate with healing, could also be used in the opposite sense – being told you are not going to get better. The placebo effect is often used to demonstrate how amenable the human mind is to suggestion – if people believe they are going to get better, they often do. What then do we make of the mental illness diagnosis, the label that the psychiatrist hands out? The mental health diagnosis, critics charge, opposes the expectation of recovery. The worst mental health diagnosis, the one with the least prospect for recovery (for people who believe what the doctor tells them) is a diagnosis of schizophrenia.

Patients are told by the doctor that they have a life long illness, that can be managed by drugs. They are told there is no hope of being cured. Therefore, the patient correctly internalizes the diagnosis and his actions henceforth tend to uphold the diagnosis. It is my experience that people who reject the diagnosis and/or do not succumb to the medical model of the so-called disease are the ones who cure themselves. Looking at recovery incentives in the hard nosed context of money, the article states: In several recent studies, placebos have performed as well as drugs that Americans spend millions of dollars on each year, one might logically ask, well, why not give schizophrenia patients the equivalent of a placebo – the expectation of being cured? The patient’s mind will take over from there.

The diagnosis effect is much more sinister than the placebo effect, at least from what little we know of how the placebo effect is being manipulated in drug trials so far. The New Yorker article IMHO shows that in the future, it is possible that the placebo effect can be manipulated for noble and not so noble ends. The diagnosis effect, when it comes to a mental health label, casts a spell over the patient, his family, and anyone who connects the diagnosis to the patient.  I have heard people parrot exactly what the doctor tells them — that schizophrenia is life long, that not taking meds leads to relapse, that the disease itself, not the effect of the meds or the natural course of the illness at a certain point, dulls the mind. The family begins to treat the patient as a mental and emotional cripple. Whatever the patient may believe about the course of his condition is negatively reinforced every day by the family and others who believe that the original diagnosis is scientifically factual, and not something that can be tweaked by the power of suggestion.

Side effects of a schizophrenia diagnosis

Was it Mad Magazine that used to run a feature called “Scenes We’d Like to See”? If I remember correctly these were usually truths about certain products or people that political correctness doesn’t normally allow to come to the surface.

In that vein, here are some common side effects of a schizophrenia diagnosis that you never see in the pharmaceutical literature. Bear in mind that the diagnosis is not the cause of the condition, but it’s a label that can lead to much more havoc than is commonly acknowledged by your health care professional.

“ACME” PHARMACEUTICAL COMPANY (buried somewhere in the fine print or sad voice-over in commercial)

The side effects of a schizophrenia diagnosis affect more than just the patient. Here are some common ones that may be observed both in the diagnosed and in close relatives of the diagnosed.

• Feelings of hopelessness, sadness and despair

• Lowered expectations

• Job loss

• INCREASED CONSUMPTION OF

          • Alcohol

          • Antidepressants

          • Antipsychotic medication

          • Food

          • Clothing

          • Marijuana

          • Marriage counsellors

          • Divorce lawyers

          • Social workers

          • Police

          • Psychiatrists

          • Psychologists

          • Priests, rabbis, prayer groups

The diagnosis creates chronic stress and prevents healing

Today’s big idea was prompted by a reader in a discussion group to which I belong. Commenting on an article in the New York Times, Talk Therapy Lifts Severe Schizophrenics, she wrote, “It’s interesting that these are patients doctors had given up on as hopeless, who would “never get better” …might not the docs’ own expectations play a role in their previous stagnation?”

Replying to her questions was easy. I simply went to my book manuscript and lifted a section from Chapter 15, The Levels of Healing, which is printed in italics below. I bolded what he has to say about the diagnosis.

Dr. Ryke Geert Hamer is a German physician and researcher known for his “10 Iron Rules of Cancer.” He considers schizophrenia, a cancer-equivalent. (Bear in mind when reading the passage, it’s not just the doctors’ expectations that prevent healing – also contributing to whether the person “heals” are the expectations of the family, which have been heavily influenced by the diagnosis.)

Most cancers or cancer-equivalent ailments, according to Dr. Hamer, begin with “Dirk Hamer syndrome”——a severe, highly acute, dramatic, and isolating conflict-occurrence shock that registers simultaneously on three levels: in the psyche, in the brain, and in an organ. The shock registered to the brain can be identified as concentric circles (or Hamer Herds) using computed tomography (CT). Where in the brain the Hamer Herd is located determines the theme of the conflict. By finding the location of the Hamer Herd in the brain, it can be predicted in which organ the cancer will arise and vice versa. Dr. Hamer maintains that the actual cause of the cancer is an unexpected shock but that the hopelessness, despair and meaninglessness felt by the patient after the diagnosis of the cancer and other diseases creates chronic stress, which prevents these diseases from healing.

In the case of the “schizophrenic” brain, according to Dr. Hamer, there are two (and sometimes three) such concentric circles, which register as a result of two (or three) shocks. Dr. Hamer does not indicate where the conflict/shock originates.

The job application form

A friend of mine sent me a question this week that I’d like to throw out to the wider community. Her son has been offered a job that requires a physical. There are now two concerns of hers that center on disclosure and stigma. The family doctor refuses to sign off on the medical form because her son was hospitalized for three weeks at this time last year, he is no longer on meds and the doctor feels he will have relapse.

My friend understands the doctor’s position from a legal standpoint, but is upset that the diagnosis will follow him around wherever he goes. She objects to the fact that he was “diagnosed” after a 45 minute interview by a doctor. Many job forms ask about mental health history.

We are all in this boat. Frankly, I’ve been avoiding this issue because I know it will rear its ugly head when Chris eventually gets around to being employed or needing insurance. I’m just hoping that things are not as negative as they sometimes look.

Can  someone get “undiagnosed?” Or, can someone go to their doctor and demand a downgrade of their diagnosis? Since medical records are private, if someone is asked on an employment form (insurance forms are more serious if falsified) what their mental health history is, what’s the matter with saying “depression?” Now that  antipsychotics are being turned into antidepressants, where’s the harm in claiming you were suffering from depression? Who’s going to know? What about getting a driver’s license for the first time?What legal recourse is there from a discrimination point-of-view?

What have we not thought of? What words of advice can you offer us?

Judging a book by its cover

When Chris was showed up at the hospital emergency room in December 2003, he was diagnosed simply because he appeared schizophrenic in the opinion of the doctor. Now, I ask, is this the best we can do in this day and age? If you show up in the emergency room complaining of an intense headache or a stomach ache, chances are you would be subject to a whole battery of tests until a diagnosis is made. Six years later any tests that Chris has undergone were at my insistence, never once at the instigation of his doctors. To put this another way, Chris’s medical care has amounted to over 500,000 USD, a staggering amount to bill to an insurance company without it demanding accompanying medical examinations to determine what may be causing the problem.

I insisted a week after Chris entered hospital that he undergo an Magnetic Resonance Imaging (MRI) to rule out a brain tumor. There was a reason for my concern related to a specific incident a few months earlier. The doctor never once suggested an MRI. Amazing, isn’t it? For such protracted, expensive treatment that not even the insurance company demands additional tests be done, makes one wonder.

What is truly outrageous if you think about the money aspect, is that six years on, Chris is still considered schizophrenic by his doctors (or possibly now obsessive-compulsive, judging from the pamphlets he has picked up in his current hospital stay) despite the oceans of money being spent. Mental patients are the cash cows of the mental health system.

Psychiatrists are not doing a very good job of it. If a company failed to make money for its shareholders, the president would be fired. If a Broadway show failed to attract an audience, it would close. Why does high-priced treatment for schizophrenia persist in the face of failure? Sadly, the answer is that the public has bought what author Robertson Davies calls the “higher hokum” of psychiatry (“teacup readers in an age of faith”) It hasn’t dawned on sufficiently large numbers of people that psychiatrists, researchers and academics are making money off the misery of mental illness by favoring the interests of pharmaceutical companies over the public interest.