The latest threshold that psychiatry has crossed

Mommy, am I really bipolar? is the title of a Newsweek piece by Stuart L. Kaplan, M.D. Dr. Kaplan argues that there is no scientific evidence that bipolar disorder surfaces in childhood. Dr. Kaplan goes through the recent history of this diagnosis which began in the 1990s with the book The Bipolar Child, and he discusses how quickly psychiatry and the public rallied around this label. Judging from the force of the comments to this article, mainly all negative in regard to Dr. Kaplan’s opinion, there should be a huge blow coming to psychiatry’s credibility as it tries to backpedal on this diagnosis in children. Why should these parents believe psychiatry now?

As much as I agree with much of what Dr. Kaplan writes, there is a huge credibility problem that has been simmering along for the profession and could boil over. Since psychiatry has put all its efforts into magic bullets it has neglected to figure out how to relieve human suffering. In fact, it has gone out of its way to tell parents that it was dangerously old-fashioned to believe that maybe the family environment has a good deal to do with why the child is behaving in a certain way and that chemicals are the main solution. I would be all in favor of what Dr. Kaplan is saying, except that he undermining this position by further arguing that bipolar in children is most often ADHD, and psychiatry has chemicals to treat that. He also refers to ADHD as less trendy than bipolar. Maybe so now, but not so when my kids were in elementary school. ADD and ADHD was THE buzz with the mothers in the schoolyard. So, all Dr. Kaplan is doing is trading one diagnosis for another diagnosis that has the FDA ‘s blessing for the drugs that are used in children.

Many young parents don’t know what they believe themselves, so they believe their doctor. They believed their doctor, perhaps after initially putting up resistance (or perhaps not), when the doctor told them their child was bipolar. Now, all of a sudden, the same doctor is telling them that the child is not bipolar? How is the doctor going to explain away the drugs and the fact that their kid is still messed up? Why should the parent believe this latest fad un-diagnosis? You would think that a parent would be delighted to hear that their child is inattentive and hyperactive, rather than the more ominous bipolar, but that doesn’t seem to be what is happening with the parents who commented on this article. They are lining up behind the belief that their child is horribly, mentally ill and they don’t want the label dropped. By giving parents this option, psychiatry has created a much bigger problem that has invaded every nook and cranny of family life and parents want to hold psychiatry to it. They won’t be able, to, unfortunately.

Psychiatry should be in big trouble from these parents now that it is backpedalling on the bipolar diagnosis. Memories are short, however. The parents of under 18s now will not be the same group of parents of under 18s ten years from now. The bipolar label is going to be folded into a new label. I’ll let Dr. Kaplan explain the new think:

The tide may be turning. The American Psychiatric Association is deliberating intensely on new criteria that would dramatically restrict this fad diagnosis. One step the association is recommending is a new diagnosis called temper dysregulation disorder, a more accurate way of describing extreme irritability in children. If mental-health professionals can be persuaded to consider these alternative diagnoses, many thousands of children could be spared an unwarranted, stigmatizing label that sticks with them the rest of their lives.

The controversy over bipolar will fade, since there is a good chance the current drugs won’t get approved for use in children, anyway, and the next generation of parents will be snowed once again by the profession using new labels and different drugs.

For those who want off the merry-go-round, this latest controversy is all the more reason to rely on one’s own intuition, to expand one’s belief system, and look to emulate people who have cured themselves.

Al Siebert’s double binds

Al Siebert, who passed away last year, has a website called “Successful Schizophrenia.” Here is an excerpt from Psychiatry’s Lack of Insight: Four Double-Binds That Place Patients in a Living Nightmare. The third double-bind below demonstrates the reason I have always had trouble with Dr. E. Fuller Torrey. I don’t think he sees people with a diagnosis of schizophrenia as fully human. He’s not alone, however. Family members often demonstrate the same lack of insight.

The third double-bind is to perceive someone as being “a schizophrenic” and then express humanitarian love and compassion for them.

The activity of allowing one’s mind to engage in “negative nouning” is similar to swearing. Perceiving someone as mentally ill is a stress reaction in the mind of the beholder. It constricts and reduces the person into something not fully human. When the viewer sees a person as a defective or sick it prevents the viewer from experiencing the diagnosed person as unique in a special way (the basis for love.)

The authors of DSM-III recognized diagnostic labeling as a problem and took the following position: “A common misconception is that the classification of mental disorders classifies individuals, when actually what are being classified are disorders that individuals have. For this reason, the text of DSM-III avoids the use of such phrases as “a schizophrenic” or “an alcoholic,” and instead uses the more accurate, but admittedly more wordy “an individual with Schizophrenia” or “an individual with Alcohol Dependence.”

Yet, even with the adoption of this position by the American Psychiatric Association in 1980, statements about “schizophrenics” abound in modern psychiatry. Psychiatrist E. Fuller Torrey, for example, tours the country telling audiences “there are over 100,000 active schizophrenics roaming the streets of our cities.”

An example of the “Love for Schizophrenics” double-bind can be found in Torrey’s recommendations on “How to Behave Toward a Schizophrenic.” He states, “In general, the people who get along best with schizophrenics are those who treat them most naturally as people.”

Silvano Arieti is a leading authority on schizophrenia. In concluding his award winning book Understanding and Helping the Schizophrenic: A Guidebook for Family and Friends, he states: “…where modern psychiatric science and our hearts meet, is the place in which help for the schizophrenic is to be found…”

The experience of people viewed as schizophrenic is something like being told by a smiling, powerful authority “I have only love and compassion for rotten assholes like you.”

Medication – the low hanging fruit

There was a strange book review in the New York Times last week by Abigail Zuger. She managed to heap praise while smugly writing with a “didn’t I tell you so” attitude on Judith Warner’s new book, We’ve Got Issues; Children and Parents in the Age of Medication.

Strange because the reviewer took such obvious delight in Ms Warner’s sadder but wiser girl perspective about how she naively thought that the overmedication of children was a fact, and gosh, six years later she couldn’t find a parent out there who was thrilled about medicating her with drugs. This is news?

Dr. Zuger, an assistant medical professor at Columbia University, is entitled to her opinions, but she is unfortunately trying to present her opinions as medical truth. They are just opinions but will be construed as fact because she’s a doctor. Treating troubled children is more than symptom management for a calmer classroom: the medications seem actually to change the structure of the brain, helping it develop in what all evidence indicates is the right direction. More children in treatment should spell the beginnings of a healthier adult world.

What? Dr. Zuger is equating treatment with drug taking, not with treating the underlying problem. The “changes the brain for the better” argument is dangerous thinking and has no scientific basis but it sure is promoted by pharmaceutical companies. They, together with medical professionals pushing the enhanced brain function, have turned college students on to the perceived benefits of self-medicating prescription drugs for the purposes of competitive advantage. (Mother’s tip: Dr. Abram Hoffer’s niacinimide remedy for schizophrenia gives you focus with side benefits, not side effects.)

More children in treatment will lead to even more children in unnecessary treatment as our college students have demonstrated. There is a “me, too” effect here, and who can blame them? Similarly, if I were a mother of a school age child and observed that all the other kids had this competitive advantage, I would be tempted to ask why should my child be denied this harmless drug that protects the brain and increases focus? That’s discrimination, isn’t it?

Dr. Zuger goes out of her way to paint a disparaging picture of naive but caring twits like me who think that young children’s mental health should be managed in a different way. After all, almost nothing is known about the effects of antipsychotic medications on developing brains, reason enough to stay away from them. The effects on developed adult brains are pretty awful, the effectiveness of the medications are being widely questioned by science, and then there is the obesity problem. Why would we foist the same problems on children?

The answer to why we do this despite knowing the risks is found in the same article. There are only 7000 child psychiatrists in the United States. Lack of insurance and/or geographical access to psychiatrist means that most children will never see a psychiatrist, or else that one psychiatrist you do have access to is going be extremely overworked. Time, money and access being a problem, it’s cheaper for psychiatry to go for the low hanging fruit. Medication is that low-hanging fruit.

I see it this way. Your child (or the child in you if you are an adult) is being sacrificed for the “easy” solution, which is always the cheap solution when society is looking for mass “fix-its.” Mental health, unfortunately, does not lend itself well to one size fits all solutions. Increasing the number of child psychiatrists is a good idea if children and families are helped to find non-drug ways of dealing with their problems. (The job I naively thought psychiatrists were suppposed to be doing in the first place.) If it leads to a proportional increase in the number of children on psychiatric drugs, the potential benefit has been lost.

So, let’s call medication what it is, which is a cheap intervention, but let’s not pretend that it is something more noble than it is or that medication will somehow “protect the brain” when there are other therapies and ideas out there that work and which don’t produce side-effects. The poorer you are, the better your chances that you’ll be handed a drug and told to go away.

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?

Once more a nerd

It was painful for me to see Chris reverse the gains he had made He was starting to look more and more peculiar, reverting to the nervous nerd look that had marked the first episode of his psychosis four years earlier. He buttoned his shirts up to the collar, and cinched his pants around his waist, leaving him looking like he was wearing high-water pants. His new red framed eyeglasses added a lab technician look to his already “odd-ball” appearance. Other people wondered what was happening to him, too. Instead of asking Chris what was going on, they spoke to me. “Oh, he’s just going through a rough patch, ” I tied to reassure them, not very convincingly. What looks like relapse may often be recovery I told myself every day or I might have completely given up hope. As the autumn progressed, Chris lost interest in going to choir practice and in continuing with his voice lessons. Ian and I insisted that he drop his two university courses before he failed them. Through all of this, we continued to work with Chris’s holistic psychiatrist to fine tune his supplements.

Then came an e-mail from Dr. Stern. While we all had agreed at our last family appointment that this was probably a necessary crisis for Chris and that with time and support he would emerge stronger, she was now suggesting strongly that he go back on both an antipsychotic and an antidepressant. She was worried that he was suicidal because he had told her in an indirect way that I thought he was suicidal. This was a miscommunication on his part about what we were discussing.

I pulled Chris aside. “Chris,” I hissed, “there are at least two things that you can tell a psychiatrist that are guaranteed to have them pulling out the prescription pad. One is to admit to hearing voices, the other is to mention suicide in any context.” Dr Stern was doing what any psychiatrist would do under the circumstances. She was protecting herself. I was very disappointed and somewhat angry with her. She knew we were against the medications because they had never worked for Chris. We engaged her specifically to help get him off them and now she wanted to throw all that away because she thought he might be suicidal.

Many people will side with Dr Stern here, because, after all, they will reason that you can’t be too careful when it comes to suicide, but I disagree. If you mention the word “suicide” to a psychiatrist, I suspect it doesn’t matter in what context you mention it, the fact is the “s” word has been said and psychiatrists have to consider their license and the very real possibility, in some countries at least, that they will be sued by the family if a tragedy does occur. I was not willing to have Chris’s recovery postponed and perhaps delayed forever by going back on medications. Dr. Stern saw Chris once a week. I saw him every day and I felt that my judgment as his mother trumped her judgment as his psychiatrist, even though I felt she was a very good psychiatrist in many other ways.

I sat Chris down. “What you decide to do about the medication is up to you,” I said. I deliberately avoided trotting out the reasons why I was against the medications. Chris knew them only too well. Chris confessed that, among other things, he was afraid that if he went back on medications, he would never be able to function at university. It was true he wasn’t functioning now at university, but the medications could make it worse, in my opinion. However, I said nothing. Chris sent an e-mail to Dr. Stern, copied to his holistic psychiatrist, Ian and me, saying that suicide was the last thing he had in mind and he was sorry if he misled her. He said he wasn’t against the medications, he just didn’t believe in them for himself.

“My feeling, he wrote,” “is that I am the cause of my own depression, but I hope that it will lift just as the clouds melt away after a summer thunderstorm.”

The glass half empty

Humoring Dr. ‘L’ was becoming increasingly difficult. We left the meeting with the understanding that the medication would be increased no more than 100 mg. Chris came home the following week with a prescription for an additional 200 mg. I e-mailed Dr. ‘L’ questioning this increase. He replied:

“I am surprised at your question, which indicates that I haven’t been clear enough, so excuse me. Chris suffers very handicapping auditory hallucinations as we have confirmed from our last meeting. In order to reduce this very painful psychotic symptomatology we propose to increase the medication by 200 mg. I thought that we were all in agreement with this strategy. That said, if as you say, the treatment is becoming the problem and not the solution, we should take this up at our next meeting. Chris can ask to reopen the issue of the medication with Dr. ‘B’.”

So, according to Dr. ‘L’, Chris still suffered from “very handicapping auditory hallucinations.” This was Dr. ‘L’’s pessimistic view of schizophrenia. This very painful psychotic symptomatology “glass half-empty” vocabulary was a continuous downer. We only heard the bad news from Dr. ‘L’. Bad news didn’t help his patient’s parents cope. What good did this kind of attitude do? And he still hadn’t fixed the problem. Ian and I believed that there was no way that raising the medication was going to fix anything.

Somehow we prevailed and the medication was raised only 100 mg. Dr. ‘L’ acknowledged that, at the end of the day, Chris’s loyalties would be to us and it was useless for him, Dr. ‘L’, to argue the point. Ian and I held the key to the drug cabinet after all. It had taken us two years to fully appreciate this point. I wished that Chris was able to be in charge of his treatment rather than be pushed around, but it was unrealistic. Chris was ill. In the acute stages, someone else had to make the decisions for him. In the later stages, the authority of his parents and his doctors overwhelmed him. He was torn and he was also medicated. In addition, he was understandably afraid that lowering the medication would bring his psychosis back. He didn’t have enough energy, intellectual or otherwise, to do his own research, to learn to rely on his own intuition, and to fight his way out.

Who am I? What am I here for? Why you might be interested in what I have to say.

“Who am I and what am I here for” are the fundamental questions of our existence on this planet.

I am Rossa Forbes, a pseudonym for me. I became a new me, a wiser and more focused me, when my oldest son was diagnosed as having schizophrenia. That was six years ago when “Chris” was 19. His diagnosis forced me think about many things in a different way.

My blog is for people who expect more out of recovery than what they are currently achieving.

I was naive when I started on this journey. Over time I became very critical of the medical treatment Chris was receiving when I realized he wasn’t getting better, despite the huge amounts of money being spent. I expected “better”. I expected “well”. Doctors instead spoke about “recovery”. Recovery is such a vague concept. It seems to be associated with quality of life, another term that I abhor when it comes to schizophrenia. Who wants to be spoken of in terms of “quality of life” when you are young and your whole life is ahead of you?

BS (before schizophrenia) I thought life was pretty good. I still do, but it is much more meaningful. Schizophrenia is not like other illnesses. I do not really consider it an illness, so if you are looking for advice on medications and how to deal with schizophrenia as a brain disease, this blog is not for you. I do consider schizophrenia a “problem”. Something isn’t working well for the individual and it is certainly a huge problem for the family members. Problems can be solved, however. They take time and effort. Nobody said this was easy. A brain disease, on the other hand, sounds final. And, of course, expensive medications are prescribed for this brain disease. These medications also have rather serious side effects.

While I hesitate to even use the term “schizophrenia” in this blog, it is useful shorthand for a collection of characteristics related to someone who is having difficulties with living.

The purpose of my blog is to do the following and more:

1. Introduce you to holistic therapies that my son underwent (I tried most of them, too.)

2. Explain why a holistic approach is better than a medication only approach. Holistic allows that low doses of medication can be useful and often necessary, but should not be considered a long term strategy.

3. Stimulate a positive and even humorous perspective about the condition

4. Encourage you to think that the expected outcome of this condition is to achieve total health

5. Demonstrate that writers, artists, poets often have a better understanding of schizophrenia than your doctor does

6. Establish a platform for the book that I am writing (feedback is most appreciated!)