Obama’s Mental Health Policy Recommendations: Expect a little Good and lots of Bad and Ugly 01/22/2013Posted by ALT in Children's Mental Health, Mental Health Policy and Inititatives, Patient Rights and Advocacy.
Tags: mental health, Mental Health First Aid, mental health recovery, Newtown, President Obama, Project AWARE, The Time Is Now, WRAP
A life lesson: Whenever someone says they’re “doing it for the kids,” you can expect very little Good and LOTS of Bad and Ugly.
Doing it for the kids
A week ago Wednesday, surrounded by adoring children, President Obama presented his plan to protect our children and communities by reducing gun violence.
Part 4 of that four-part plan was entitled “Increasing Access to Mental Health Services,” which says:
If even one child’s life can be saved, then we need to act. Now is the time to do the right thing for our children, our communities, and the country we love.
That’s right, folks: this time we’re doing it for the kids.
Spare no expense when you’re doing it for the kids!
Obama’s proposals come with a big price tag: $55 million!
And they seem geared towards one basic thing: get more children into professional mental health treatment (he even sets a specific goal of 750,000 children — pretty nice for Johnson&Johnson, Eli Lilly, et al to have advance notice of the number of new potential lifelong customers, eh? ).
What’s wrong with encouraging young people to seek treatment?
My parents did what millions of American parents have been taught to do: they saw how much emotional pain I was in, and they sought “help” for me in the “mental health” system. They had no idea that my entrance into a psychiatrist’s office as a young teenager would end up stripping me of my health, my hope, and my sense of Self. Today, we are able to come together as a family with forgiveness, acceptance, love, and gratitude, to talk about how counterintuitive my journey into a system of proclaimed “healing” ended up being; indeed, as the result of being “shielded from harm” by the “mental health” system, I experienced more harm than I could have ever imagined for myself.
—Laura Delano, in her essay “Free from Harm? Reflecting on the Dangers of the White House’s Proposed ‘Now is the Time’ Gun Control Plan” (you should read it… it’s good)
In other words, Obama’s placing the spirit of America’s youth on the altar.
Do it for the kids.
Mental Health First Aid: The Good?
So what exactly is the government buying with $55 million of my —and my fellow Americans’— hard-earned cash?
One of the proposed interventions, “Mental Health First Aid,” is a 12-year-old evidence-based practice (that’s on the verge of a lucrative adolescence, it seems). Developed and initially implemented in Australia, it’s a 12-hour course for the layperson that teaches people to:
- know the signs of mental health problems
- provide first aid for mental health crises (like suicidal behaviors, panic attacks, etc.)
- promote and enhance recovery.
These don’t sound like bad goals at all. And, really, much of the documentation on Mental Health First Aid is helpful, non-stigmatizing, very human (as opposed to institutional) stuff. For example, the Mental Health First Aid sheet on “psychosis” says:
How can I be supportive?
Treat the person with respect. You should try to empathize with how the person feels about their beliefs and experiences, without stating any judgments about the content of those beliefs and experiences…
Should I encourage the person to seek professional help?
You should ask the person if they have felt this way before and if so, what they have done in the past that has been helpful. Try to find out what type of assistance they believe will help them. Also, try to determine whether the person has a supportive social network and if they do, encourage them to utilize these supports.
Respect, dignity, being non-judgmental, activating a social support network of peers, friends, family, and asking the individual what sort of assistance he or she would prefer — quite frankly, that sounds fantastic!
That sounds like self-advocacy! That sounds empowering!
Actually, it sounds a lot like the principles of WRAP [Wellness Recovery Action Plan] – a wellness tool developed in part by Mary Ellen Copeland that has helped so many individuals reclaim their right to define wellness, and to find the resources they need for achieving it inside themselves…
Unfortunately, the emphasis on self-advocacy/determination and peer support is spotty at best when you examine the entire body of Mental Health First Aid literature. The truth is these folks are just as intent as Obama on directing people towards the “necessary professional help,” with self-care and self-help an optional second.
The Bad and the Ugly
Things go from bad to worse when you take a look at the Manual for Mental Health First Aid. In here, we learn that:
The symptoms of depression are thought to be due to changes in natural brain chemicals called neurotransmitters. These chemicals send messages from one nerve cell to another in the brain. When a person becomes depressed, the brain can have less of certain of these chemical messengers. One of these is serotonin, a mood-regulating brain chemical.
And a few pages further in the manual, we find these ugly sentiments:
A team of Australian mental health researchers has reviewed the scientific evidence for the effectiveness of a wide range of treatments for depression. The following rating system was developed to show the treatments whose effectiveness was best supported by the evidence:
☺☺☺ These treatments are very useful. They are strongly supported as effective by scientific evidence.
☺☺ These treatments are useful and are supported by scientific evidence as effective, but the evidence is not as strong.
☺These treatments may be useful and have some evidence to support them. More evidence is needed that they work.
Since when is a therapy that’s been shown to be no more effective than placebo [antidepressants] rightfully classified as ”very useful,” and “strongly supported…by scientific evidence”?
And they’re giving three smiley faces for electroconvulsive therapy, too?!
Electroshock devices still have not been thoroughly reviewed for safety by the FDA (if they were, they’d have to nail down that nasty little statistic of how many deaths by ECT per 100,000?), and many studies counter the “three smiley faces” rating, including this large literature review, whose authors state:
The cost-benefit analysis for ECT is so poor that its use cannot be scientifically justified.
—John Read and Richard Bentall in “The effectiveness of electroconvulsive therapy: A literature review“
Moreover, firsthand accounts of electroshock are often anything but “smiley.” In the words of Ernest Hemingway, a shock survivor:
Well, what is the sense of ruining my head and erasing my memory, which is my capital, and putting me out of business? It was a brilliant cure but we lost the patient….
Imagine an alternative
Imagine an alternative. Imagine that the President recommended a course of action that emphasized self-reliance, empowerment, and advocacy, an “evidence based practice” that was steeped in the philosophy of respect and dignity for all (rather than just a semblance of it). One that emphasized treatments that were cost-effective or even free (rather than relying on very expensive, “appropriate professional help”), and one that pointed people towards achieving their visions for their lives, their wellness.
In other words, what if the president had set aside $55 million for the teaching of WRAP [Wellness Recovery Action Plans], or something like it, to anyone who so desired?
Those might be the last few dollars ever spent on so-called “mental health care”— with a population empowered to embrace its own humanity and resilience, there’d be no more need for it.
Experts attempt to persuade parents struggling with the decision to medicate their children that the “benefits outweigh the risks” 12/11/2012Posted by ALT in Bipolar, Children's Mental Health, Mental Health News, Pharmaceuticals.
Tags: antipsychotic, childhood bipolar disorder, Janet Wozniak, Joseph Biedermann, mental health, polypharmacy
When you see a USA TODAY headline like this – “Parents struggle with decision to medicate bipolar kids” – and a subheading like this…
Because treating a child with heavy medication has far-reaching implications, parents wonder whether using psychiatric drugs is the best way to help their children with bipolar disorder.
… you might be surprised to find that what you’re reading is far from a balanced consideration of the true risks and benefits of psychotropic medication and polypharmacy in children. Instead, what you get is an out-and-out endorsement for drugging children, fast and furious.
We begin with scare tactics:
“Without treatment [read: medication], I see my daughter as killing herself,” says a weeping McQuilkin, 60.
As quoted in USA TODAY’S article Parents struggle with decision to medicate bipolar kids [emphasis added]
Bipolar is a lifelong disease, and you don’t want to diagnose it too early and be wrong, or miss something and be too late.
Gabrielle Carlson, professor of psychiatry & pediatrics at Stony Brook University
As quoted in USA TODAY’S article [emphasis added]
We move quickly on to more expert opinions:
I understand the reason why a parent would be afraid to medicate their child. There are often serious and unknown side-effects to consider. But parents also need to consider that there may be a downside to not medicating and missing an opportunity to interrupt the course of a serious illness. … Not medicating may also carry with it risks.
Janet Wozniak, psychiatrist at Harvard Medical School
As quoted in USA TODAY’S article [emphasis added]
Finally, we are assured that the benefits outweigh the risks:
There’s no free lunch with medication. But if an eye tic is what a child gets vs. getting kicked out of school because his behavior is unmanageable, then it’s worth the risk.
Gabrielle Carlson [emphasis added]
No free lunch?
An odd choice of words for Gabrielle Carlson, who has this additional list of credentials (from a 2010 Conflict Of Interest [COI] disclosure):
- Honorarium and Travel Expenses: Ortho-McNeil-Janssen Pharmaceuticals, Inc., Shire Pharmaceuticals, Inc.
- Research Funding: Bristol-Myers Squibb Company, Eli Lilly and Company, GlaxoSmithKline, Otsuka America Pharmaceutical, Inc.
Janet Wozniak, too, is no stranger to the free lunch:
- Faculty: Johnson & Johnson Center for Pediatric Psychopathology at the Massachusetts General Hospital (more on that momentarily…)
- Consultant: to Pfizer, Shire Pharmaceuticals, and Eli Lilly
- Research Funding: Eli Lilly
- Speaker’s Bureau: Eli Lilly and Janssen
(from a COI statement issued 2009)
Don’t you think it’s more fair to say that there IS a free lunch for some (medical experts, or “key opinion leaders” as they’re referred to by pharmaceutical companies) but NOT for others (children subjected to the horrors of polypharmacy and the mortal risks included therein)?
What they forgot to mention
Wozniak, Carlson, and the other experts quoted by USA TODAY neglected to include a few key facts that parents struggling to decide whether or not they should medicate their children for so-called “pediatric bipolar disorder” DEFINITELY ought to consider:
1. The relatively recent (we’re talking mid-90s) rise of the idea that so-called “bipolar disorder” is not an almost exclusively adult phenomenon but a widespread pediatric disease which must be aggressively treated with hardcore psychotropic medications, possibly for life. Authors Joseph Biedermann and Janet Wozniak’s turn-of-the-millennium publications put forth this cash cow of an idea and jump started the 4000% increase of this diagnosis in children between 1994 and 2003.
2. Biedermann et al also established – at (coincidentally!) the very same time – a lucrative partnership with Johnson & Johnson, which generously provided grant funding for the “Johnson & Johnson Center for Pediatric Psychopathology at the Massachusetts General Hospital” in 2001. A report to the funders (that would be J&J) dated 2002 reads, in part:
An essential feature of the Center is its ability to conduct research satisfying… [certain] criteria…. [including that] it will move forward the commercial goals of J&J.
…many clinicians question the wisdom of aggressively treating children with medications, especially those like neuroleptics, which expose children to potentially serious adverse events….
Through the funding provided by J&J, we [the J&J Center for Pediatric Psychopathology] are creating a team of investigators focusing on the following issues:
…We will generate and publish data on the efficacy and safety of medications for improving currently available treatment options for child psychopathology. This work is an essential precursor to the … widespread use of medications
[more on Biedermann and Wozniak’s collusion with J&J to carve out a market for Risperdal in the pediatric population here.]
3. The very serious side effects of antipsychotic medications in children, including extreme weight gain, type 2 diabetes, obesity, and heart conditions, and brain shrinkage. Antipsychotics have also been shown to significantly worsen symptoms of psychosis over time, making a potentially one-time occurrence into a chronic disease.
4. And finally, for children and adults alike, the Physician’s Desk Reference warns that use of antipsychotics can cause suicidal ideation, aggression, and violence. For example, the entry for Seroquel lists “thoughts of suicide or dying,” “feeling very agitated or restless,” “new or worse irritability,” “acting aggressive, being angry, or violent,” “acting on dangerous impulses,” and “mania” as symptoms that may occur in conjunction with use of Seroquel.
Bipolar disease is treatable, that’s the most important thing. I always tell young people who are at the beginning of treatment that bipolar is bad, but now is a great time to get it.
Kay Redfield Jamison, professor of psychiatry at John Hopkins School of Medicine
As quoted in USA TODAY’S article Parents struggle with decision to medicate bipolar kids [emphasis added]
Let’s be real: now is a great time for children to get themselves prescribed a whole bunch of pills under the guise of treating their ”lifelong, chronic, REAL bipolar disorders,” so that Wozniak and friends might partake in their free lunches.
But are those lunches really free if the children are the ones paying for them?
Tags: Alex Gorsky, antipsychotics, childhood bipolar disorder, Dr. Joseph Biederman, Johnson & Johnson, Medicaid fraud, Risperdal, schizophrenia
To paraphrase a recently released pharmaceutical industry investment report, your 10 year antipsychotics money-making forecast is as follows: partially cloudy skies in 2011 will give way to full sun by 2021.
In other words, antipsychotic patent expirations will be tempered by the emergence of new BLOCKBUSTER antipsychotic drugs, and investors can expect to make a PILE of money by 2021.
The 208 page report, produced by the market research firm of Decision Resources, goes on to make the following predictions:
- sales for schizophrenia therapies will drop from $7.4 billion in 2011 to $6.5 billion in 2014 in the developed world, as people switch to newly available generics
- the launch of new drug therapies will increase profits thereafter to $8 billion by 2021
- these will include glutamine reuptake inhibitors, which will be marketed as “adjuncts” to antipsychotics which address the so-called “negative” symptoms of schizophrenia (apathy, catatonia, low self-esteem, etc.) and are expected to achieve blockbuster status
- also included are injectable atypical antipsychotics, sales of which will more than double from $1.4 billion in 2011 to $3 billion in 2021
Well, I’d like to try my hand at a little forecasting myself. In order for those 8 billion buckaroos (or more!) to find their way into the right pockets, I expect we’ll see:
- Heavy recruitment of key “opinion leaders” by pharma, supposedly unbiased researchers and clinicians whose endorsements for pharma products are bought and paid for by way of massive bribes (er, I mean funding) for “research” with predetermined outcomes, specifically designed to promote pharma’s commercial interests.
- A whirlwind of publications promoting the use of long-acting antipsychotic injections, glutamine reuptake inhibitors, the need for polypharmacy in the treatment of schizophrenia, or any combination therein
- A concerted effort at a.) expanding the members of the population that could be construed as suffering from so-called “schizophrenia” b.) expanding the list of other uses for these drugs, including any and all known or as-yet-unknown “diseases” and “conditions” (even if they must be created out of thin air) and c.) further ingraining the idea that conditions which require the use of these drugs are serious, chronic, and require probably lifelong use of patented medications – no generics, please!
- If required by the myth-building machine that will lay the foundation for the forthcoming BLOCKBUSTER drugs, paradigm shifts away from currently accepted ideas (perhaps the general public’s abhorrence of forcibly injected, mind-altering drugs? Or a sly admittance that the whole “dopaminergic” hypothesis regarding the biological cause of schizophrenia was, perhaps, maybe, incorrect?)
The logic behind this forecast is simple: it’s exactly what was done by pharmaceutical companies to promote blockbuster atypical antipsychotics 10 years ago. And why get creative when the scam worked so well the first time around?
The scam that worked so well
A lot of internal documents never meant for public eyes have come to light in the recent litigation against Johnson & Johnson for Medicaid fraud and the off-label marketing of RISPERDAL. Two delightful samples will be dissected below:
- The full deposition of Alex Gorsky, current CEO of Johnson & Johnson (makers of RISPERDAL), recorded in May, 2012 as part of the national RISPERDAL litigation.
- The Annual Report (2002) of The Johnson & Johnson Center for Pediatric Psychopathology at the Massachusetts General Hospital, a research center that presented that was charged by their funders (J&J) to produce specific research outcomes that would support the commercial goals of the company. This a report from the Center to its funders on their progress towards these goals.
Early in Gorsky’s deposition, we learn that the Johnson & Johnson Center for Pediatric Psychopathology at the Massachusetts General Hospital, headed up by Dr. Joseph Biederman, was established by a grant from J&J and its affiliates for $500,000 in 2001. The center was described in an internal J&J email as “a great way to get the word [about RISPERDAL] out to a big part of the child and adolescent prescribing community.” This was a full 5 years before Risperdal was approved for pediatric use.
And if the name “Joseph Biederman” sounds familiar, that’s because Biederman is commonly acknowledged as the originator of the idea that childhood bipolar disorder is, in fact, a widespread pediatric disease which must be aggressively treated with medications, specifically antipsychotics. His turn-of-the-millennium publications with Janet Wozniak are credited with jumpstarting the 4000% increase of this diagnosis in children.
More recently, Biederman gained notoriety for some seriously scandalous behavior: he guaranteed J&J company representatives favorable outcomes for a 2005 trial of RISPERDAL in preschoolers. This did tarnish his reputation a little, but by no means did it motivate any of the institutions for which he works (Harvard Medical School, Massachusetts General Hospital) to dismiss him.
What you’ll see in the documents below is that 2005 was not the beginning of Biederman’s agreement with J&J to produce favorable results validating the research conclusions they specified in advance; that’s been going on at least since 2001, and perhaps earlier.
And what exactly did Johnson & Johnson want him to prove? That there is such a thing as childhood bipolar disorder. It’s a brain disease, likely chronic, that requires lifelong medication adherence. And most importantly: kids need to be taking RISPERDAL.
From the Annual Report (2002) of The Johnson & Johnson Center for Pediatric Psychopathology at the Massachusetts General Hospital
An essential feature of the Center is its ability to conduct research satisfying… [certain] criteria…. [including that] it will move forward the commercial goals of J&J.
Considering that nearly all psychiatric medication use in children is off label, studies of safety and efficacy in children are essential for clinicians, parents, and patients to feel comfortable using these medications in children… Equally important to effective use of medications is the demonstration of the validity of disorders. Because parents, patients, and clinicians are exposed to a media that frequently questions the validity of childhood disorders, genetic and brain imaging studies are needed to show the validity of these disorders as brain disorders that respond to medication. Epidemiologic studies are needed to show that childhood disorders are frequently chronic and severely debilitating. Without such data, many clinicians question the wisdom of aggressively treating children with medications, especially those like neuroleptics, which expose children to potentially serious adverse events….
Through the funding provided by J&J, we [the J&J Center for Pediatric Psychopathology] are creating a team of investigators focusing on the following issues:
We will generate and publish data on the efficacy and safety of medications for improving currently available treatment options for child psychopathology. This work is an essential precursor to the … widespread use of medications given that most must be used off-label.
From the deposition of Alex Gorsky, CEO of Johnson & Johnson (makers of RISPERDAL)
[by the way, Gorsky is positively the most skilled waffler I have ever encountered! Twice in the deposition he admits to having given the opening address at a meeting (it was, unfortunately for him, noted in the agenda), but can't recall having been there or any of the other things said, and even goes so far to suggest that he may have given the opening address but then, somehow... left. Maybe he was the guy they sent to pick up lunch...]
Scientific “research” to further Johnson & Johnson’s commercial aims
Q. You see this document is called “Annual Report 2002: The Johnson & Johnson Center for Pediatric Psychopathology at the Massachusetts General Hospital“?… And the director is Joseph Biederman, M.D., whom we’ve spoken about a couple times today, right?
Q. Let’s turn to page 861, please, Mr. Gorsky, which is it is executive summary of the annual report. The first sentence of the overview says that “The mission of the Center is…a strategic collaboration between Johnson & Johnson and the Pediatric Psychopharmacology Research Program at the Massachusetts General Hospital.” Is that correct?
A. Yes, that’s what it says.
Q. Let’s turn to the next paragraph, Mr. Gorsky. It says, “An essential feature of the Center is its ability to conduct research satisfying three criteria. . .” Did I read that right?A. Yes.
Q. And if we look at the third criteria, it says “it will move forward the commercial goals of J&J.” Is that correct?
[…Gorsky tries and fails to avoid answering this question. Finally…] A. Yes.
Q. So, this annual report from the Johnson & Johnson Center For Pediatric Psychopathology from 2002 admits that information and research from this supposedly unbiased research center is to benefit the business of sales for Johnson & Johnson. Is that correct? … And commercial goals would include sales of pharmaceuticals. Is that right?
A. Yes, it would.
Promoting the widespread use of medication, specifically RISPERDAL, in children
Q. Okay. And then if we look at the next sentence from the annual report, it says “We strongly believe that the Center’s systematic scientific inquiry will enhance the clinical and research foundation of child psychiatry and lead to the safer, more appropriate and more widespread use of medications in children.” Did I read that correctly?
A. Yes, you did.
Q. So…one of the goals of this center’s inquiry is to lead to the more widespread use of medications in children. Is that right?
A. […extensive verbage from Gorsky, followed by…] yes.
Q. … Mr. Gorsky, let’s look at the next sentence, where it says “Considering that nearly all psychiatric medication use in children is off label. . .”
Q. Do you see that?
A. Yes, I do.
Q. And that would include Risperdal because in 2002, I think we’ve already agreed, Risperdal was not approved for use in children and adolescents. Is that right?
A. Based upon our earlier conversation, it did not have the specific indication at that time, that’s correct.
Producing lifelong RISPERDAL customers
Q. And it [the J&J Research Center’s 2002 Annual Report] says — and this is interesting — “Showing how pediatric mania evolves into what some have called mixed or atypical mania in adulthood will provide further support for the chronic use of RISPERDAL from childhood through adulthood.”
Do you see that?
A. Yes, I do.
Q. So, one of the specific goals of the center is to show that pediatric mania will evolve into mania in adulthood, which will then require the chronic use of Risperdal from childhood to adulthood. Is that right?
A. […much waffling, and then…] I think if that was the goal as outlined, that was a reasonable research objective.
Q. And the continuation of Risperdal from childhood to adulthood would be one of those –remember back in the beginning of this document we saw the word there were commercial goals of Johnson & Johnson, right?
A. Yes, I did see that.
Q. All right. And the continuation of a Risperdal prescription from a young man or young boy through adulthood would be a commercial goal of Risperdal, right? Or of Johnson & Johnson, I’m sorry.
A. Successful treatment of patients, if they were responsive on the medication, for them to stay compliant on the medication would be one of our goals, but only if the drug was working and the patient was living better.
Q. So, the way I interpret this is that Johnson & Johnson and Massachusetts General Hospital and Dr. Biederman are collaborating to validate a lifetime use and treatment with Risperdal. Is that correct?
Maryanne Godboldo — mother honored for defending her daughter’s right to remain psychiatric drug free 05/12/2012Posted by ALT in Children's Mental Health, Pharmaceuticals.
Tags: CCHRI, human rights, Maryanne Godboldo, Risperdal, Thomas Szasz
1 comment so far
Some of you may remember from a year or so ago the story of Maryanne Godboldo’s 10 hour stand-off with Child Protective Services and the police in Detroit, Michigan, who wanted to remove her child from the home. They brought a SWAT team, and a tank (!)… all because this mother had weaned her daughter Ariana off of Risperdal after seeing the side effects it caused and was pursuing other, non-medication, therapies to address Ariana’s needs.
This brave woman defended her daughter’s rights — first at home against the excessive force brought by the government — and later, in court. She won, and was recently honored by the Citizen’s Commission on Human Rights International [CCHRI-- conglomeration of mental health activists* who strongly idenfity with Thomas Szasz] for her courage with a “human rights award.”
Here’s a brief film they put together documenting Godboldo’s story:
And here’s an excerpt from the acceptance speech she gave upon receiving the award back in February:
I vowed that I would never let anyone harm my child under any circumstances. My mother protected me and I wanted to do the same for my child. So I began to research how to legally fight Child Protective Services.
The amount of helpful information I found was phenomenal. At that point, I knew I was not alone in this battle. I just had to do my part and Ariana had to do hers,and that was to hold on.
I believe that Ariana and I had to go through this to expose a dark, ugly, foul secret. The selling, kidnapping and holding hostage, as well as the unnecessary drugging of our children.
We as parents must never stop protecting our children. It is our responsibility to care for them. So we must read, research, and do whatever we must to help our children. No one is going to take better care of our children than we are.
We must prepare ourselves to do so and let the Lord continue to implement His plan.
*Note: They were co-founded by the Church of Scientology, too… Szasz himself is not and never has been a member of or affiliated with the Church itself. He also authorized this statement about the Church of Scientology’s involvement in the CCHRI:
Scientologists have joined Szasz’s battle against institutional psychiatry. Dr. Szasz welcomes the support of Jews, Christians, Muslims, and any other religious or atheist group committed to the struggle against the Therapeutic State. Sharing this battle does not mean that Dr. Szasz supports the unrelated principles and causes of any religious or non-religious organization. This is explicit and implicit in Dr. Szasz’s work. Everyone and anyone is welcome to join in the struggle for individual liberty and personal responsibility — especially as these values are threatened by psychiatric ideas and interventions.
Tags: Charcot, conversion disorder, epilepsy, Freud, hysteria, Le Roy, neurological disorders, psychoanalysis, tic, toxic overload
In Greek it literally means “travelling womb,” because that’s what the Ancients thought caused all manner of feminine problems the label referred to — an errant uterus “floating” around inside the body, creating disturbances, taking up space.
More recently, hysteria is (or once was) a medical term used to describe an overwhelming array of symptoms (including twitching, seizures, fainting, partial paralysis) experienced mostly by women, which are generally understood to be psychosomatic.
It’s all in your head.
This label was the genesis of Freud’s psychoanalytic approach, and he originally got the idea from his teacher, the neurologist Jean Martin Charcot. Charcot believed that many of his twitching, contorted patients suffered, not from any physical pathology, but from a traumatic psychological event which caused them to manifest psychosomatic symptoms. It was unconscious symptom formation, or as Freud would term it, “repression.”
There was a serious problem with all of this, however; every case listed by Charcot as an example of his theory would be understood today as a case of brain damage or epilepsy, not so-called “hysteria.”
From this excellent essay on the history of “hysteria” by Robert Webster:
Many subtle neurological disorders, such as temporal lobe epilepsy, and frontal-lobe epilepsy, were unrecognised in Charcot’s day. At the same time, the internal pathology of head injuries remained an almost complete mystery. Closed head injuries, which produce concussion without leaving any external injury, were simply not recognised…
When Charcot was confronted by patients who adopted the arc-de-cercle position by compulsively arching themselves backwards, he was not to know that this posture (which is sometimes combined with rhythmic pelvic thrusting) was a characteristic manifestation of frontal lobe epilepsy. In fact this form of epilepsy would not be fully described until another hundred years had passed. Even temporal lobe epilepsy, with its bizarre hysterical-seeming symptoms, was not recognised until the 1930s or 1940s. Confronted by the symptoms of these medically uncharted conditions, Charcot had little option but to place them in the catch-all diagnostic category of an illness – ‘hysteria’ – for whose existence no reliable clinical evidence has ever been produced…
What made the resulting labyrinth of medical error all but inescapable was that practically every other physician had become lost within it. Over and over again, highly trained medical practitioners, confronted by some of the more subtle symptoms of epilepsy, head injury, cerebral tumours, multiple sclerosis, Parkinson’s disease, Tourette’s syndrome, autism, syphilis, encephalitis, torsion dystonia, viral hepatitis, reflux oesophagitis, hiatus hernia and hundreds of other common or uncommon conditions, would resolve their diagnostic uncertainty by enlarging the category of hysteria yet further. As a result medical misconceptions which sprang from one misdiagnosis would almost inevitably receive support, and apparent confirmation, from misdiagnoses made by other physicians.
As you can see, “hysteria” essentially functioned as a catch-all diagnostic category when doctors were at a loss to explain symptoms [much like a few “modern” psychiatric labels I can think of]. As greater understanding of brain disorders has emerged over time, hysteria has been slowly winnowed away to nothing. These days it’s an antiquated concept, one of the few examples of a psychiatric label was loudly defended as SCIENTIFIC! … and eventually abandoned, very quietly, as completely untenable, nonexistent.
Look who’s back in town
“What happened to the girls in Le Roy” ran in Sunday’s New York Times Magazine, and it appears that what happened was mass hysteria, renamed “conversion disorder” for the purposes of public relations and modernity. Or so we are lead to believe.
This is a pretty long article, so let me give you the bullet points:
* Starting about 6 months ago, 18 teenage girls in the town of Le Roy (in Western New York) successively came down with strange symptoms: tics, so-called “non-epileptic” seizures, flailing of arms and legs, etc.
As you can see, this stuff is no joke:
Parents were individually told by doctors it was a “stress response,” but as more and more girls suffered they began to make connections. Environmental toxins were suspected.
* Le Roy was an industrial town once host to flour mills, salt mines, (and slightly more recently), a large Jell-O factory. One could “always tell what flavor the Jell-O factory was producing on a given day based on the color of the water in Oatka Creek.”
Additionally, there are “natural gas wells on school property, toxic-waste cleanup sites within a few miles and a sticky orange substance oozing out of the playing fields.” In 1970 a train accident in Le Roy dumped 10,000 + gallons of toxic chemicals including trichloroethylene (which has been proven to cause neurological damage), and currently fracking is a common practice in the area. Put simply, there are a lot of environmental toxins to be concerned about in the area around Le Roy.
* Both the EPA [Environmental Protection Agency] and the NYSDH [New York State Department of Health] conducted tests for environmental toxins in the area and concluded nothing harmful was present in the air, water, or soil. Independent (ie non-governmental) testers called in by concerned parents for a second opinion were barred at gunpoint by state police from collecting test samples.
* 5 months into the public health crisis, in January, officials announced their official opinion; it was conversion disorder. These girls were “subconsciously converting stress into physical symptoms.” They were suffering from mass hysteria.
Interestingly, this diagnosis was only announced AFTER a few girls and their parents made an appearance on the TODAY show to discuss their beliefs that environmental toxins might be the culprit – the very next day, in fact.
The author of the NYT article, Susan Dominus, goes to great lengths to have us believe that mass hysteria is the sole cause of these girls’ complaints. She discusses turbulent family situations, traumatic pasts, social connections and alliances between them. She is quick to discredit alternative diagnoses given by other doctors (such as Dr. Rosario Trifiletti, who suggested a newly emerging disease – PANDAS — which is an auto-immune disorder caused by an inappropriate response to strep infection and has been known to cause mental illness-like symptoms; more on that here), and marches out the EPA’s official findings of “no environmental toxins” at crucial moments in the narrative.
Probably in an attempt to pacify critics of the “conversion disorder” diagnosis, she repeats that it is a “real” disease – just because it is psychosomatic does not mean the girls are “faking it.” We even get a little spoonful of brain science to prove the point. (Something to do with lighty-britey brain scans, overactive amygdalas, etc.).
Some rather important points the author chooses to gloss over:
One of the girls closely followed in the story has been diagnosed with epilepsy — her mom was unconcerned while she convulsed on the floor on national television. Another is reportedly taking 11 different pharmaceuticals. One of the girls’ mothers has had a malignant tumor and a neurological condition called “trigeminal neuralgia.” This woman has had surgery 13 times. She also “suspects a cancer cluster on the street where she once lived in Le Roy — she and several of her neighbors have been stricken with tumors.”
That’s a lot of health problems for a small group of people!
At one point, reporters uncovered dozens of corroded barrels near the site of the aforementioned 1970 train wreck “oozing a putty-colored material” in an area labeled HAZARDOUS WASTE. EPA officials quickly told reporters that they did not believe “for one second” that the barrels contained hazardous materials. And what do you know… tests “proved” that they were totally safe.
You’ve got to be kidding me.
Most importantly of all:
There is at least one other girl suffering from the same symptoms who was NOT originally from Le Roy. Lori Bronwell, a teen from Corinth, NY passed through the area last summer and soon came down with the same tics, twitchings, and spasms. She was subsequently diagnosed with Lyme’s disease, and is currently being treated. A press release from Dr. Trifiletti (the doctor who tested the girls for PANDAS) stated that two of the girls under her care also meet the Center for Disease Control diagnostic criteria for Lyme’s Disease.
Am I saying that all these girls have Lyme’s disease? Of course not. Am I saying it’s definitely environmental toxins? No.
Here’s what I’m saying: I don’t know of, have NEVER heard of, a case of “conversion disorder”/hysteria that wasn’t really a case of a doctor reaching the end of his or her diagnostic rope (Freud included). It is only too clear that levels of MANY neurological disorders and dis-eases — like autism, epilepsy, allergies — are rising and rising FAST. These numbers simply can’t be explained away, not with claims of “under-diagnosis” in the past, and certainly not by telling those who suffer that it’s “all in their heads!”
We need to have a serious, public discussion about the very real consequences of toxic overload on our minds and bodies. We need to keep searching for healthy and wholesome ways to live our lives, to heal ourselves and our world.
On the subject of meaningful goals 03/09/2012Posted by ALT in Children's Mental Health, Philosophy/Spirituality.
Tags: busy schedules, extracurricular activities, goals, journey, setting goals
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WordPress is “modernizing” itself, as fellow users can testify to. One of the biggest changes to the interface is a feel-good sidebar that pops up every time I publish a post. It looks like this:
Yippee! Only 1 post away from my “goal” of 90 posts? What an accomplishment!
Never mind that I didn’t set this goal – WordPress did. In fact, WordPress resets my “goal” by increments of 5 or 10 every time I come this close to elevating my lime green levels to that little star at the end. Truth be told, readers, I have never reached the gold star, and I never will.
If I did, I hope it would look something like this…
But what if my goal were quality of writing, not quantity? Or perhaps something even more nebulous and difficult to measure, such as raising awareness of the issues herein discussed; processing my own thoughts about the treatment of the so-called “mentally ill” as it reflects our society’s values or lack thereof; or offering information, comfort, or hope to folks dealing with emotional distress?
These goals simply don’t fit into the computer-generated, lime green paradigm.
Which brings me to my first point:
A goal set for you by an outside entity is about as useful as a bicycle in the middle of an ocean.
It doesn’t fit the context. It can’t get you where you’re going. And by distracting you from the conditions at hand, by challenging your very experience of reality (are we on land or at sea?), it may very well sink you entirely into someone else’s view of your trajectory and existence.
I think I might’ve mentioned that I teach music lessons.
About a month ago, I started a new student (let’s call her “Liz.”) She’s a freshman in high school with no less than EIGHT extracurricular activities! Three private lessons per week with different music instructors, numerous choir and band rehearsals, physical therapy, music contests and performances to attend on the weekends. Her mother proudly told me that Sunday is the only day she has any free time at all! (Liz quickly added that she has to do homework on Sundays).
This mother believes that her child needs to be kept BUSY in a very structured, institutionalized sort of way. It is safest, wisest, if her daughter’s time, decision-making, and activity are all managed by, completely filled up by, the expertise of professionals.
This doesn’t leave much time for self-discovery. Quietude. Mindfulness.
And with EIGHT extracurricular activities going at once, it doesn’t leave much time to develop real skill in any of them. Liz is being taught the art of dabbling.
Learning to play a musical instrument takes time. Daily time alone, actively cultivating the skills and the ears necessary to produce a sound, and then refine that sound until it truly sounds good (we call this “practice,” and it is a practice – a meditation).
It is a discipline, a pursuit. But it is something to relish! During this alone time you are invited to continually reflect on the sounds you are producing and how to make them more harmonious, more resonant, more beautiful. You are wrapped up in the magic of the music you are creating, and you are creating that music – not for pay or reward, not because you are forced to – but simply for your own pleasure and betterment.
If we are too busy to take the time to do this for ourselves – in any capacity; not necessarily music – can we achieve anything truly satisfying? What are we really teaching our children when we enroll them in far more activities than they could ever really complete satisfactorily? Again, here is this issue of quantity vs. quality. My student Liz probably has more participation medals, trophies, and certificates than she knows what to do with. Her college application materials will list a truly impressive array of extracurricular activities, a veritable cascade of golden stars!
But moving once again beyond the lime green paradigm, what has she accomplished? Is she satisfied with the level of skill she has obtained in any of her areas of study? Does she know what true competence in any field is like? Will she ever?
Liz’s mom contacted me the other day. The high school band has been selected to march in a parade at Disney World! Liz really wants to go. Unfortunately, she plays piano and sings – no place for these instruments in the marching band.
The solution? I am to teach Liz to play the music on a saxophone. An instrument she has never touched before. We’ve got 3 weeks to do it, and judging by Liz’s incredibly busy schedule, she won’t have any time to practice outside of our lessons, so that makes three hours to do it.
As her mom explained it: “if she doesn’t learn to play the sax, she’ll have to just hold a flag or some cymbals, and that would be embarrassing.”
Maybe her mom doesn’t realize it, but she’s going to be marching around pretending to play the saxophone (that’s all I’ll have time to teach her) – what could be more embarrassing than that? Finding yourself onstage, ready to perform, and realizing that you don’t know how to play the instrument… it is the stuff of nightmares!
The band’s invitation to march in the Disney World parade is seen as a great achievement – all the students, Liz included, are going to be congratulated for their “hard work,” their “effort.” There will probably be a trophy to display with all the others in the glass case at the front of the band room, they will be told that they have accomplished something.
But who among those students has ever known, independent of any medal or rubric or congratulatory figure, that he has accomplished something? That it is an accomplishment by his standards, and no one else’s. Who among them has ever privately or publicly rejoiced in reaching the end of a journey that was plotted, from beginning to end, by him and him alone?
If our children were permitted to do this — set goals that are meaningful to them and pursue them in their own fashion with the loving support and guidance (when called upon!) of their communities, their families – our society would look dramatically different.
I’d LOVE to see the looks of it.
Tags: children's mental health, program evaluation, SAMHSA, system of care
For two years, I worked full time in the field of children’s mental health program evaluation and research as a “Research Project Coordinator.” My boss, the “Principal Investigator,” and I had been contracted to implement a standardized, predetermined program evaluation of what is called a “system of care” – a program that coordinates and delivers services to children with mental health challenges. The system of care had been set up with money from SAMHSA [Substance Abuse and Mental Health Services Administration], part of the Department of Health and Human Services.
Any community that received funds from SAMHSA to start one of these “systems of care” – and there were over 144 of them! – had to agree to implement the full data collection protocol, which required in-depth multiple choice interviews be administered to about 250 families. Researchers were also expected to access extensive school records, court records, and medical records from the community mental health center. Again, these research methods were implemented over and over, in every one of those 144 funded communities.
In short, the “Children’s Mental Health Initiative” (as SAMHSA calls it) is the largest standardized children’s mental health research project ever conducted. The datasets collected by this massive undertaking – nearly 20 years’ worth of data on tens of thousands of families – are owned by the government and managed by a contracted firm called ICF International, which, oddly enough, also has extensive contracts with the Departments of Defense and Homeland Security. Go figure.
So that was the project, and I was its local coordinator. I worked extensively with the regulatory agencies that protect human research subjects’ rights to get their approval for our proposed “research methods.” I called potential participants and, following the script, assured them that being in the study was a chance for “their voice to be heard” and to “ensure that other children with challenges like their child’s could get services, too.” I conducted interviews with mothers, grandmothers, uncles, and the children themselves (when they were old enough to be in the study). I attended children’s mental health research conferences where we presented our data and listened to other communities present theirs’. I attended numerous meetings in our designated area of evaluation (the community, we always called it), listening to social workers and other helping professionals talk endless circles around the project, its goals, its implementation, and something they called sustainability.
Sustainability inspired complicated emotions in these folks. Each and every person employed by the system of care would lose his job in 5 years (that’s when the federal funding ran out), if the specter of sustainability was not made more substantial.
Now, a federally funded “system of care” is a real gravy train. A community mental health center thus financed can easily employ twice as many, perhaps even three times as many, social workers and “helping professionals” as before. Some people were literally paid to do nothing more than exist and lend the program more credibility by their impressive titles; the “Technical Assistance Coordinator” and “Social Marketing Associate” come to mind. And then there were the fantastic perks: free trips to “conferences” at lovely resort destinations (how’s Tampa in late February/early March sound?), fancy business lunches provided on a near weekly basis (they call it “community engagement”), and, best of all, business cards that say you’re making a difference in children’s lives – a real boost to the self-esteem, which is priceless, isn’t it?
Most of the staff seemed to know that they couldn’t keep riding the gravy train forever, but the burning question – would they even have jobs in 5 years? – had to be answered. So sustainability was a real presence in those meetings, a creditor who couldn’t be evaded forever, or a god that must be appeased.
But what’s the one thing that nobody – not even the gods – can question? SCIENCE. It’s objective. It’s proven. It’s Fact. Science as published in peer-reviewed, “scholarly” articles, as glossily summarized in abstracts and press releases, as cited by thousands who have never read the research in its entirety. If you choose to discount it, then you’re an irrational being, not worthy of consideration.
So science, in the form of program evaluation, was the answer to the sustainability question. The system of care needed research that “proved” it was “effective,” that justified its continued existence, and that generated visually stimulating graphs with lines that went up (it really was that simple). With their irrefutable SCIENCE in hand, they would apply for new grants, secure renewed funding, and keep the gravy train chugging along. This was not just the local solution to the sustainability problem – it was national and it was built right into the Children’s Mental Health Initiative by SAMHSA from the very beginning.
This, by the way, is a classic example of a synthetic Hegelian dialectic put in place by an institution to achieve its pre-determined goals with a semblance of grassroots mobilization; otherwise known as the “problem-reaction-solution” paradigm. In this case, it went something like this:
- Problem: in 5 years you won’t have a job
- Reaction: I can’t miss a mortgage payment! What do I do?
- Solution: justify the continued existence of your job by participating in and encouraging a truly massive data collection initiative, the depths and true purpose of which you know nothing about, an undertaking that under different circumstances you might question critically…
It hits home at a very personal level. The threat of losing your job is literally a threat to your survival (and in the case of most of these employees, a threat to the survival of their children). Animal — and maternal — instincts are activated, and critical thinking is no longer a part of the equation.
A critical thinker would question the protocol that SAMHSA gave us. Is it appropriate to ask a parent to “list 5 things you don’t like about your child,” or “True or False: I turned out to be a worse parent than I thought,” (as we did in every interview)? Is this “data” of any scientific value whatsoever? Why must the protocol as a whole be so incredibly negative, pathologizing, and stigmatizing? What is all this data really for, and what is the true purpose of the data collection exercise?
Such questions were taboo. If someone insisted on asking them anyway, they were met with simple, pat answers, such as “it [the protocol] is not perfect, but it will help us help kids.”
We were doing it in the name of job security. We were doing it to survive. Problem-Reaction-Solution.
In countless meetings, workshops, and teleconferences, our mission as evaluators and “research scientists” was made clear to us: we needed to prove that the system of care was effective to ensure more funding, on both the local and national levels.
Obviously, with this being the setup, bias in our research was maximized from the very beginning. In the script I read to potential participants in the study (which was “officially approved” by the Human Subjects Institutional Review Board), I was instructed to say: “We’re hoping to prove that the system of care works. That way, similar programs can be funded in the future.” From the first moment of contact, participants were notified what outcomes we, the researchers, expected.
Amazingly, many families would agree to the first interview. Few agreed to a second, however (there were supposed to be 5 per family; one every 6 months). They knew something was up.
Nevertheless, the data collection project went forward more or less as planned – continues on nationally to this day.
And so I return, now, to those questions I wasn’t allowed to ask at the time: What was all that data really for?
Sometimes we said it was to prove that the system of care improved outcomes for children and families involved in it, but that’s not the answer. Wouldn’t we have stopped to ask the families what “improvement” meant to them if that were the nature of our quest?
Other times, when we professionals were talking amongst ourselves, we said it was to secure more funding; but that could easily have been achieved with far less data then we collected during the burdensome, 2 ½ hour long interviews. The annual report to Congress, the supposed culmination of our efforts, was usually only 15-20 pages long, with only very small portions of the data we collected represented in its primary colored pie graphs.
Why did SAMHSA need to win our compliance with this effort so clearly deserving of critique?
What is the true purpose of the data collection enterprise?
Kids answer the question “What is art?” 02/11/2012Posted by ALT in Children's Mental Health, Philosophy/Spirituality.
Tags: Cartesian split, life is art, middle school, what is art?
1 comment so far
I spend some amount of time every week in middle and high schools, teaching private music lessons to students there.
In one particular middle school, I pass a display of students’ answers to the question “What is Art?” as I leave the building. I don’t think I’ve successfully made it out yet without stopping to look at their varied answers — once for almost an hour, usually for 10 minutes or so. They’re arresting in their beauty, simplicity, depth. I wanted to share some of their responses (anonymized, of course) with you.
Being heard, expressing yourself:
[Art is a way to be heard from the heart or mind!]
[Everything created by the human mind, and hand that expresses you.]
Interesting — in both of these, reference is made to the mind and the body (body being referred to as “heart” and “hand,” respectively). Art is not a product of just one or the other; it transcends the Cartesian split.
[Art is the definition of a person's emotions that he has written so others can see how he felt through his artwork.]
Art is semantic, it speaks through a language of symbols. A painting of a haystack is not about a haystack, it’s about what the haystack represents, and how the author felt about the haystack, how the haystack feels in the larger context of the world.
[A way to express your feelings. Art is Life.
Life is art.]
I can’t help but wonder why this one’s author decided to cross out “Life is art.” It looks like she wrote it in pencil, outlined in marker, and then crossed it out and replaced it with the statement (in marker only — definitive) “Art is Life.”
Coloring the world:
[I find art something to make the world bright.]
[Art is colorful yet can Be Black and White.]
Paradoxical. But there is truth to be found in paradox.
[Pictures of your Imagination]
[Art is Any human talent or Skill.]
The act of living, doing what you do well with confidence and joy, is Art.
Being you. Being human.
I hear people say, so often, “I could never be/have been an artist. I’m just not artistic.” But every action has artistic potential! If done in a human way, a mindful way, a right way. I think this is called “the aesthetics of being.” But I suppose it is called many other things, too.
And my personal favorite:
[Art doesn't have to appeal to everyone to be a good piece of art.]
I might add — art doesn’t have to appeal to anyone but you to be a good piece of art. Being human in your own special way doesn’t have to appeal to anyone else, either.
Can you see now why I have so much trouble making it out of the building?
“He Was Square Inside and Brown” 01/22/2012Posted by ALT in Children's Mental Health, Survivor Voices.
Tags: compulsory schooling, conformity, dehumanization, institutions, suicide, teen suicide
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This is a poem written by an anonymous high school senior in Alton, IL two weeks before he committed suicide:
He Was Square Inside and Brown
He drew… the things inside that needed saying.
Beautiful pictures he kept under his pillow.
When he started school he brought them…
To have along like a friend.
It was funny about school, he sat at a square brown desk
Like all the other square brown desks… and his room
Was a square brown room like all the other rooms, tight
And close and stiff.
He hated to hold the pencil and chalk, his arms stiff
His feet flat on the floor, stiff, the teacher watching
And watching. She told him to wear a tie like
All the other boys, he said he didn’t like them.
She said it didn’t matter what he liked. After that the class drew.
He drew all yellow. It was the way he felt about
The Teacher came and smiled, “What’s this?
Why don’t you draw something like Ken’s drawing?”
After that his mother bought him a tie, and he always
Drew airplanes and rocketships like everyone else.
He was square inside and brown and his hands were stiff.
The things inside that needed saying didn’t need it
Anymore, they had stopped pushing… crushed, stiff
Like everything else.