All about Eve

My theme, that psychiatry threw the baby out with the bath water when it stopped implicating parents in their children’s mental health issues, continues.

From a Child & Adolescent Bipolar Foundation blog.

In 1977, a Northern California mother named Eve decided she’d had enough. Eve had raised a child diagnosed schizophrenic and had endured the prevailing thinking by the medical community and society at-large at the time; that her son’s condition was her fault. That something in how she raised him caused his psychotic break with reality during his teens. Trying to get appointments with the local mental health facility administrators was frustrating, and the results of meetings she could get just made her angry. So on October 22nd, Eve and another couple, Tony and Fran, met with seven other concerned families of mentally ill children and formed the California Association of Families of the Mentally Disabled (CAFMD). But, they were just parents. What could nine sets of parents really do?

She explained why she took this dramatic step to the World Congress on Psychiatry that same year. Eve said, “We failed to understand why parents of a child with Leukemia were treated with sympathy and understanding, while parents of a child with schizophrenia were treated with scorn and condemnation.”

I’m old enough to remember the bad old days of parent blaming, which I mainly get a whiff of through the comments of people my own age whose siblings had a diagnosed mental illness (usually schizophrenia.) They tell me that how badly hurt their parents were by the attitude of the psychiatrists that they were at fault. I have no doubts that this is true and awful to experience. Psychiatry could have done a better job of it though, by skillfully and diplomatically promoting family based therapies.

Instead, at the behest of parent organizations like the one started by Eve that eventually became NAMI, psychiatry became pharmaceuticalized. By not taking a stronger stance, based on educating parents about what makes families tick, psychiatry deprived parents of meaningful ways of helping their children. The point of organizations like NAMI, as demonstrated by this quote, was to force psychiatry to retract its thinking that the family environment was largely responsible for major mental health issues. It was a tragedy in the making, because can we really say that there is less mental illness now than there was then, and that more people are leading productive lives? Robert Whitaker’s book, Anatomy of an Epidemic, says “no.”

What seemed like a justifiable course of action that the CABF article above relates (stop making parents feel bad about their child’s mental illness), warped into what we have today, where psychiatrists routinely tell people that they have a brain disease, not a malfunctioning environment. Most psychiatrists will no longer even tolerate a parent pleading with them to help them in some other way beyond the drugs. If you don’t already believe this, please read the latest Daniel Carlat interview here. NAMI and CABF have received the bulk of their funding from pharma. The belief that it is just plain wrong to link family trauma to mental health outcomes is seen in the number of people who accept that they have a brain disease. This belief is expressed by the CABF blogger who clearly wants parents to continue to fight the good fight.

I pulled a couple of comments in response to the CABF blog post which illustrates how far the pendulum has swung the other way. The first comment makes me laugh, because, thanks in large part to CABF, pharma and psychiatry’s efforts, she wonders if her kid’s problem is a circuit burn-out issue (almost like the kid needs to go back to the repair shop.) Poster number 2, if I read this correctly, is taking two drugs and has a nine year old DS (diagnosed son?), who is on a cocktail of drugs.

Comment 1
My seventeen year old son is diagnosed with bi polar disorder. He can be very energetic and try exsessively hard to be “good”. on the other hand he can become very irritable, unmotivated and bullyish. Between the cycle of mania and depression he appears to “crash” he behaves as one that has been on heavy drugs and is experiencing withdrawl symptoms. He acts very sedated and calm. Is there something that is taking place in his brain that is similiar to a ciruit burn out that explains this behavior ?

Comment 2
Thank you for that blog- It gave me goosebumps. What an inspiration!

Heather (40) Cymbalta; Seroquel XR
DS (9) BP, ADD, IED (TBD?) 1800 mg Trileptal; 10 mg Abilify; therapeutic level of Keppra; Clonidine for sleep, trying Home School in the fall; DH (39); DD (7); DS (3); Dog

CABF and NAMI are professional organizations that lobby for the brain disease model of mental illness because they won’t accept the blindingly obvious, that parents do play a role in their children’s mental health problems. Organizations like these have made getting good help for my son more difficult than it need be, because psychiatrists block their ears and will not listen to you if you aren’t talking drugs and diseased brains with them. They have been bullied into this position by lobby groups.

Design your own T-shirt contest

The silly season is upon us. The NAMI convention runs from June 30th to July 3rd in Washington, DC. Imagine you are picketing their convention center proudly wearing a T-shirt you have designed yourself. You’re MAD as hell.

I just checked the NAMI website and noticed another misery story about schizophrenia with a dire warning about going off your drugs. Oh my gosh, it’s even worse than I imagined.

The Movie
Unlisted: A Story of Schizophrenia is set to screen on Friday, July 2, at the NAMI National Convention. The gripping documentary depicts the struggle of filmmaker Delaney Ruston, both a daughter and a doctor, to bring her father, who has paranoid schizophrenia, back into her life after hiding from him for ten years.

What starts as a powerful story of reconciliation suddenly shifts when Delaney’s father stops his medications and goes missing.

Steve Lopez, author of The Soloist, has called the film “beautiful and powerful.”

This extraordinary film challenges us to reflect on our own ideas about mental illness, compassion and responsibility.

Here’s something to get you started. Make your messages playful but pointed. All entries will be forwarded to MindFreedom and posted on this blog.

“Off-meds and a danger to society”
E. Fuller Torrey

Unmedicated and roaming the streets

I’m a MAD mother
(Mother against psychiatric Drugging)

SZ, unmedicated, and luvin’ it.

Off-meds, not off my rocker.

Went on a psych trip and all I got was this crummy T-shirt.

Off-meds. Back-off.

Just say “no” (to psych drugs)

Mommy – can I take drugs? No dear, just the antipsychotics the doctor gives you.

NAMI: Las drogas se habla aquí.

Pharma and NAMI: A marriage made in heaven.

The “off-meds” hysteria

A cause worth promoting is to decouple the idea that people with a label of schizophrenia are, by definition, dangerous when off meds. Stephany of Soulful Selpulcher relates the story of how differently her daughter was treated by authorities when she somehow lost the label “schizophrenic.” In the first instance, her twenty-one year old daughter was slammed face down into the dirt by the police because word got out she was a schizophrenic “off meds.” An over-reaction worthy of the best horror films ensued. It’s the “off meds” part here that causes the violent reaction. OMG – they’re off meds! Nuke-em! When, on a different occasion, the same young woman was reported “mute and autistic,” she was treated with respect.

Remember the hunger strike that MindFreedom went on back in 2003 to try to force the American Psychiatric Association to produce actual scientific evidence backing the reason why only the medical theory of ‘chemical imbalances’ predominates when it comes to mental illnesses. (No evidence was produced.)

How about a bunch of people getting together to go down and picket the American Psychiatric Association, the offices of E. Fuller Torrey, the National Alliance for the Mentally Ill (NAMI), most government funded health organizations and other proponents of the idea that people off meds need to be back on them? Not just any bunch of people but a bunch of people who got the label SZ and are fully capable of functioning off their meds. They can hold up signs saying “I’m off meds. What are you going to do about it?” Or, “I’m off meds. What next?” or “Off meds doesn’t mean off my rocker.” How about “Off meds – Back off!”

NAMI – scary

NAMI is getting seriously scary. It is aligning itself with childhood drugging. Excuse me, but how exactly are pediatricians qualified to conduct mental health screening? The kinds of problems they will be picking up will not be with the people who end up with a diagnosis of schizophrenia at 20, but rather with children who are presenting behavioral problems, usually with justifiable cause. NAMI should be lobbying for non-drug interventions, such as family counselling. Oops, I forgot. NAMI insists that mental illness is biochemical in nature, therefore guaranteeing an income stream to pharma while letting parents off the hook. Shame, shame.

After Her Brain Broke

After Her Brain Broke: Helping My Daughter Recover Her Sanity, by Susan Inman (introduction by Michael Kirby, Chair, National Mental Health Commission of Canada; with endorsements by E. Fuller Torrey, MD, Daniel Kalla, MD, Stephanie Engel, MD and others)

I ordered this book, not because I thought I would agree with it, but because there is actually another mother out there who has written about the mental health diagnosis of her child, which in this case is kickstarted by Paxil for some kind of depression/difficulties, thus raising bipolar, which then becomes schizoaffective, schizophrenia and OCD. With that many diagnoses, I would have lost my faith in psychiatry much earlier than I actually did. Susan Inman has not lost faith in psychiatry, only with the kind of psychiatry that doesn’t come with a prescription. If you are a person, like I am, who believes that schizophrenia is not a brain disease and that medications are ruinous in the long run, then this book is not for you. I am dismayed about how heavily the author relies on E. Fuller Torrey. Many people feel that the references cited in this book, including E. Fuller Torrey, Dr. Nancy Andreasen, and the National Alliance on Mental Illness (NAMI) have contributed to the rise in the overuse of antipsychotic medications today.

Mothers come in all shapes and sizes and political leanings. If there is one thing that the author and I might be able to agree on is the dismal state of psychiatry and how badly it has served both patients and families alike. Where we differ is in the details. It would come as no surprise to anyone since E. Fuller Torrey endorses this book, that Susan Inman fully subscribes to the broken brain theory of mental illness. The title strikes me as an homage to psychiatrist Dr. Nancy Andreasen’s book, The Broken Brain. Now even Dr. Andreasen has started to warn about the dangers of long term use of antipsychotic medication, something she helped promulgate. That’s no help to the people who have suffered under this regime, but hey, again, that’s how badly served people are by psychiatry. Susan Inman, despite the ten different medications her daughter has been on in about as many years, still clings to the idea that a better drug will be invented.

I can excuse that belief to some extent because the broken brain biochemistry model is what people have been told for decades by doctors they are supposed to trust, and families are desperate. However, my son and my family and others are the products of the NAMI/Torrey/Andreasen cabal that insists that medications are the only way to deal with schizophrenia. We suffer at the hands of doctors who refuse to consider that medications aren’t helping and are actually hurting people’s chances of real recovery. The doctors weren’t honest with us. They never clued us in that there are competing theories of mental illness, and that medication is not always the way to go. This is called “full disclosure” in other areas of endeavor. Neuroleptic medications are a bitch to withdraw from. Telling the doctors that weight gain, increased risk of diabetes, tardive dyskinesia and early death is unacceptable when there are other avenues out there falls on deaf ears.

I have a hard time with Susan Inman’s other main point (and Dr. Torrey’s): That the family background has nothing to do with a mental illness. She seems unwilling to even remotely entertain the idea that maybe there is something in the family environment beyond just a medical diagnosis of bipolar and epilepsy in distant relatives, that might have something to do with the rage and suspicion that her daughter spat back at her. She is upset with anybody who seems to even hint at this. Like it or not, most people labeled mentally ill, I have found, do believe it is their family that contributed to their breakdown. (People don’t listen to mental patients’ actual complaints.) No, the problem is with her daughter’s biochemistry, she asserts. The family is not dysfunctional, her daughter is mentally ill. She bristles at the suggestion of Expressed Emotion, as one of the doctors in a family education class spoke about. She reasons that she and her husband have been very careful not to criticize their daughter. The problem with Expressed Emotion, in my opinion, is that it is a concept that nobody has bothered to properly explain and therefore nobody really knows what it is about. It is a concept that I believe is valid, and is much larger than the family criticizing (or not) their relative. It is also the emotion around being told that you are mentally ill and that you must accept your sickness. Organizations like NAMI do this very well. What it tells the suffering individual is that there is something wrong with them. How can someone get well if they are constantly told they are sick and that they must accept that they are sick or they won’t get well? That is like a school teacher telling a child that they are stupid, but if they want to do well, they must first admit their stupidity. This approach is discouraged in every other area except mental health, apparently. Pity is also Expressed Emotion. So are medications (feeling singled out trauma associated with being fat, drooling, unable to drink alcohol when everybody else can, etc.). Expressed Emotion can be delivered by doctors and society. (Schizophrenia is the Diagnosis of Doom.) I had to find out about Expressed Emotion for myself. It is not mentioned much these days for exactly for the reason that Susan Inman found objectionable. She writes: “Fuller Torrey sees a lot of this work as just one of many efforts to find new ways to blame families.” Really? If anything, I think that family background has been unexamined for decades for fear of offending people.

I’m a mother, too, and I may not be wild about people hinting that maybe I should take a look at myself, but what I cannot understand is someone who isn’t intellectually curious and fearless enough to be willing to investigate the possibility if it could result in breakthroughs for her daughter. Yes, there are good therapies that address this (even for schizophrenia!), but that would mean, of course, that they might tread into family background. Susan Inman refuses to go down that path. She paints an idyllic but sketchy portrait of family life. How many of us are that fine and noble as parents? I am ashamed of things I have said and done in moments of anger when my children were small. My son’s childhood was normal enough, but mental illness is a lot more nuanced that what is on the surface. People on the outside looking in might think that ours was a normal family, and it was, but it isn’t really. No family is normal. None. What is so hard about that?

Susan Inman has such fears about anything less than a perfect family for her children that I fear she has not stretched herself enough to be honest with her daughter or herself. A holistic person would feel that the person with the label is on to something, even if not understanding the root of it. Psychiatry has been too busy with the prescription pad in the second half of the last century to build on the base established by Freud, Jung and others in the first half. Freud appears to be utter rubbish to her. She has bought the medical model. She routinely dismisses the idea that there is another side to this. When a member of the Vancouver Playwrights’ Theatre Centre writes a letter objecting to the terms of the guidelines of the conference the author is sponsoring, saying that there is no evidence that schizophrenia is a neurobiological disorder, she portrays the basis for his opinion as mental illness being invented by psychiatry and pharmaceutical companies to make money. Full stop. No acknowledging that this is a widely held opinion by many thoughtful people. Most people have no opinion about schizophrenia unless they have an intimate involvement with it, as I would assume the letter writer has. She sees his complaint as romanticizing mental illness. This is what she calls an anti-science approach, which makes me sad because science hasn’t been especially good to her daughter or my son. When her daughter manages to enroll in a sociology class, she discovers to her horror that the teacher tells the class that pharmaceutical companies in cahoots with psychiatrists have made up a bunch of mental disorders for which there is no evidence. Well, isn’t a first year college course (especially sociology) exactly the kind of place that should challenge your closely held assumptions? Not when it comes to mental illness, I guess.

To Susan Inman’s credit, she is tenacious, but in a completely opposite way than I would go. She’s got involved with NAMI to fight the stigma. I said NAMI perpetuates stigma. Stigma will remain as long as people are not getting better. “Science” has enabled people to remain mentally ill and now it wants mental illness to be accepted by removing the goal posts. NAMI is an organization that encourages relatives to continue to medicate their relatives, thus putting real recovery even further out of reach. U.S. Congressional investigators have determined that, in recent years, the majority of NAMI’s donations have come from drug makers. The disclosure came about after longstanding criticism of NAMI for coordinating its lobbying efforts with drug makers and pushing legislation that also benefits the pharmaceutical industry.

To illustrate what a colossal train wreck the biochemical model of mental illness is, it is interesting to see how dosage is viewed in different countries. Of course, recommended doses are changing yet again, so what Susan Inman and I were told a few years ago is not what we would be told today, but here is her experience. She goes to the Menninger Clinic in the United States and is told that the level of meds her daughter was on in Canada was not high enough. Doctors in the United States administer much higher doses of antipsychotics early in the treatment because they have found it more effective in stamping out psychosis. This causes her to worry, naturally, that it is too late for her daughter. In Europe where we live, the doctors told me that in North America the doses are too high and that in Europe they have found that minimal doses work best. I am not thrilled with the European logic, either, because what is actually considered a low dose? If someone passed me an antipsychotic and urged me to try one, even at a low dose, I would decline. I don’t think I would function very well.

Kudos to Susan Inman for being a mother willing to write about a difficult subject. I have wrestled with the rating I want to give this book. It’s a gripping read. My hesitation is that when someone first is given The Diagnosis of Doom the doctor may suggest that you read E. Fuller Torrey, and now maybe they will include Susan Inman’s book. If you want to actually get over your diagnosis, you will have to look elsewhere. The web is full of self-help advice from people who’ve been there and emerged transformed. No praise to this book for perpetuating the NAMI biochemical “just take your meds and don’t even bring up the family environment” version of mental illness. Schizophrenia is not like any other illness. It has to be tackled with more imagination and respect than just administering drugs and telling your relative that it’s brain damage. Refusing to recognize the importance of the family background will guarantee the persistence of the purely pharmaceutical model and extended mental illness.

Schizophrenia for Dummies

While vacationing in Florida last week, I dropped into a Barnes & Noble and headed straight to the psychology and body/mind/spirit section where the bright yellow and black cover of Schizophrenia for Dummies immediately caught my eye. Flipping through it convinced me that the title is, indeed, correct. This book is for dummies, or at least will not further your ability to overcome schizophrenia if you buy what it is selling.

To begin with, the cover invites the reader to “learn to help their loved one live a happier, more productive life.” How patronizing. Note that there is no mention of the person with schizophrenia learning to help him/herself take charge of their own life. Using the term your loved one when it comes to schizophrenia may at times be necessary but it has the chill of a body on ice.

The inside of the book subtly reinforces the idea that your relative is, and will continue to be, dead/managed/dependent. The authors, Irene Levine, Ph.D. and Jerome Levine, M.D. are profoundly indebted, of course, to members of NAMI. The book trots out the usual stuff about myth busting such as the myth of split personality, the myth that people with schizophrenia are violent, the myth that bad parenting is the cause. All of these so-called myths have a basis that is conveniently forgotten these days.

There is a cartoon towards the end of the book that sums up the bias of the NAMI-indebted authors towards instilling a take charge of your own life perspective. An aging father is talking to his son in the son’s bedroom. Why don’t we talk to your doctor about adjusting your medication, and then see about building that underground railroad to all your friends’ homes. Humor is needed, but the message is not encouraging. Dependent aging child, aging parent. How long is that child/man going to be living at home in the same bedroom he grew up in? The cartoon inadvertently raises the question, if the medications are really all that effective, as the father seems to believe, how come the kid is still delusional?

How do you feel about this?

According to yesterday’s New York Times,* Aspergers syndrome is proposed to be struck from the next edition of the DSM, due out in 2012, in favor of the term “autism spectrum disorder.” I suggest that the DSM editorial board hit the delete button and do the same thing for schizophrenia, in favor of a more nuanced perspective, as appears to be the case with the jettisoning of the Aspergers’ label. The DSM proposed change recognizes that there are different levels of functioning within autism, and that there are often other accompanying health problems that need to be treated.

This is a step forward, at least. Why not extend the same courtesy to schizophrenia, which seems to be on the bipolar, depression, mania, OCD spectrum? Although I am most definitely not in favor of saddling anyone with a psychiatric diagnosis, taking on the likes of the American Psychiatric Association, publisher of the DSM, will have to be chipped away at over time. What exactly is the difference between Aspergers, which can be terribly taxing on the individual and the family, especially when the child is young, and schizophrenia, which often allows a trouble free childhood and academic success, often brilliance, but provokes a major crisis in the adolescent years and early twenties? Well, for one, Aspergers is a recent addition to the DSM (1994) and it is easy to give up something you haven’t become entrenched in. (I had actually never even heard of it until my son was diagnosed with schizophrenia.) Schizophrenia, in contrast, functions as both the the holy grail and cash cow of the mental health industry. Wait, no, I take that back about the holy grail part. The APA and pharmacology aren’t interested in curing schizophrenia. It’s too much of a cash cow. They just pretend they are interested.

“Asperger’s means a lot of different things to different people,” Dr. Catherine Lord is quoted as saying. “It’s confusing and not terribly useful.” (I say the same goes for schizophrenia.)

The New York Times article quotes the efforts of the Aspergers’ lobby to widen the understanding of Aspergers to include health issues that accompany this diagnosis. The autism lobby has done an excellent job of bringing the message to the psychiatric community that there are underlying health issues that can be addressed, very often successfully. Many people say exactly the same thing about schizophrenia. I won’t quibble about deleting one more meaningless diagnosis in the DSM, but while they are at it, they should treat schizophrenia in the same way.

Unfortunately, the diagnosis of schizophrenia is too big a diagnosis for the APA to relinquish. That they will hit the delete button for schizophrenia is unlikely, given that the latest APA news to be posted on its site is “Brain MRI May Pinpoint High Psychosis Risk.” Nonetheless, let’s keep in mind that the gay rights lobby forced it to delete homosexuality from the DSM in the early 1970s. It can be done.

It can be done, were it not for the fact that the public seems to have bought the APA’s and NAMI’s negative view of schizophrenia. There is no powerful lobby for schizophrenia taking the same position that the autism lobby has succeeded in doing. This means that the battle to normalize schizophrenia on the spectrum of human conditions and delete it from the 2012 DSM is lost before it has begun due to a lack of organized opposition to the prevailing viewpoint.

“All interested parties will have an opportunity to weigh in on the proposed changes. The American Psychiatric Association is expected to post the working group’s final proposal on autism diagnostic criteria on the diagnostic manual’s Web site in January and invite comment from the public.”

Mark your calendar for January 2010 and let them know that Aspergers isn’t the only meaningless label. Here’s the APA’s website address.


Not a joiner by nature

During this early period, I toyed with the idea of joining the National Alliance on Mental Illness (NAMI). The website proclaimed: “Join NAMI today! When you become a member of NAMI, you become part of America’s largest grassroots organization dedicated to improving the lives of persons living with serious mental illness.” I just couldn’t join. Maybe it’s that I’m not a joiner by nature, but the message I got from NAMI’s website is that mental illness is a lifelong commitment with no escape hatch: “Individuals with schizophrenia face enormous challenges, including society’s stigmatization of people living with schizophrenia, and the discrimination that results from these prejudices.” Why, for heaven’s sake, instead of celebrating people whom they seem to regard as chronically disabled, don’t they say that they are dedicated to helping people with serious mental illness get over it and get on with their lives? Why not, indeed?