The over-diagnosis of early onset schizophrenia and other irregularities in psychiatry

Judith L. Rapoport, M.D.
		Judith L. Rapoport M.D. is Chief of the Child Psychiatry Branch NIMH. She is a graduate of Harvard Medical School. She did her clinical and research training at the Massachusetts Mental Health Center (Boston), Children's Hospital (DC), and the Karolinska Hospital (Stockholm). Her research has focused on diagnosis in child psychiatry, Attention Deficit Hyperactivity Disorder and Obsessive Compulsive Disorder. Over the past decade, her group has been studying the clinical phenomenology, neurobiology and treatment of Childhood Onset Schizophrenia. She is an author or coauthor of over 300 scientific papers, a member of the Institute of Medicine, and a Fellow of the American Academy of Arts and Sciences.

A brief clip of a recent webinar:

Out of 361 kids initially screened as potential participants in a phenomenology, neurobiology and pharmacologic response study, 37% of them, a total of 132 kids were determined to have been incorrectly diagnosed with schizophrenia, and were excluded. 229 were presumed to have been accurately diagnosed with schizophrenia, and 228 of these were observed at an inpatient setting over a period of several weeks. Upon discharge, only 126 of the 228 were believed to have a diagnosis of schizophrenia, e.g. 34.9% of the original 361 kids who had been diagnosed and were screened for potential participation in this study by Rapoport and her colleagues had been (presumably) accurately diagnosed with schizophrenia....

Diagnostic disagreement is not simply a problem caused by a lack of inter-rater diagnostic agreement, it is more a problem caused by the lack of empirical data to support and validate the diagnostic criteria. The rate of diagnostic disagreement in this study effectively demonstrates how dangerous and unreliable the DSM is.



The current psychiatric treatment guidelines adopted by the APA and the AACAP are developed using a quasi-democratic process to achieve consensus. The first line treatment always recommended for a diagnosis of schizophrenia in professional guidelines, practice parameters, and treatment algorithms is neuroleptic drugs. 

Expert opinions are not a valid substitute for empirical evidence; nonetheless, expert opinions are relied on (presumably) because the available evidence does not support the treatment recommendations promulgated through a political process in which psychiatrist's expert opinions are used to pseudo-validate the recommendations and used to justify the prolific prescription of teratogenic drugs, as a "necessary medical treatment" regardless of the therapeutic value to psychiatric patients who are labeled and targeted for psychiatric treatment... 

Psychiatry is obviously NOT an ethical medical specialty! 

watch on youtube      the slides for Judith Rapoport's presentation

Here is what the NIMH website says about this project:

"Since 1990, the NIMH has been recruiting patients with onset of schizophrenia before age 13. Major goals are to study brain development during childhood and adolescence in early onset schizophrenia patients. Preliminary genetic studies show association with a number of schizophrenia risk genes such as GAD and NRG1, supporting continuity with the adult disorder. In addition, abnormal brain developmental trajectories in patients and their full healthy siblings are seen in relation to risk alleles for these genes. Treatment studies have shown the unique benefit of clozapine for treatment resistant patients. A new study of transient cortical electrical stimulation has begun for control of selected symptoms. (emphasis mine)

"Children and adolescents meeting DSM-IV criteria for schizophrenia are being recruited nationally for a study of the phenomenology, neurobiology and pharmacologic response of childhood onset schizophrenia. Over 300 medical records have been reviewed from which 320 patients and their families, appearing to meet DSM-IV criteria for schizophrenia with onset of psychosis prior to age 12, were screened in person. Of these 225 were hospitalized for medication free observation.  A total of 112 received the diagnosis of schizophrenia at NIMH screening. A large number of children are receiving the diagnosis of schizophrenia improperly resulting in inappropriate treatment, even at academic centers. " here

Remember, according to Judith Rapoport's webinar and the slides she used, of the 361 kids screened for potential participation in the study, only 126 (34.9%) were believed to have schizophrenia at discharge.

The lack of empirical validity means psychiatric diagnosis is unreliable; the fact that mental health professionals have police powers to detain people make psychiatric diagnosis and treatment a risky proposition. The risk of disability and premature fatality are inherent, unavoidable risks for people of all ages who take psychotropic drugs; children and adolescents are known to be have an even greater risk for experiencing adverse effects, including drug-induced fatality. These pertinent facts make Jeffrey Lieberman's claims utterly irresponsible; being without a factual basis, his claims are unethical.

via Hearing Voices Network:

Basic information about voices and visions

via Intervoice:

Children Hearing Voices: What you need to know and what you can do

Free booklets for parents and supporters

What you can do if your child tells you they are hearing voices

1. Try not to over react, although you will be understandably worried, work hard not to communicate your anxiety to your child.
2. Accept the reality of the voice experience for your child: Ask them about their voices, how long they have been hearing them, who or what they are, do they have names, what they say etc.
3. Let your child know that lots of children hear voices and mostly they go away after a while.
4. Even if the voices do not disappear your child can learn to live in harmony with his/her voices
5. It is important to breakdown your child’s sense of isolation and differentness from other children. Your child is special, unusual perhaps, but normal.
6. Find out if your child has any difficulties or problems that they are finding very hard to cope with and work on trying to fix these problems. Think back to when the voices first started, what was happening to your child when they first heard voices? When did the voices arise for the first time? Was there anything unusual or stressful that might have occurred?
7. If you think you need outside help, find a therapist who is prepared to accept your child’s experience and work with your child in a systematic way to understanding and cope with their voices better.
8. Be ready to listen to your child if they want to talk about their voices and use drawing, painting, acting and other creative ways to help them describe what is happening to them.
9. Get on with your lives and try not to let the voice experience become the centre of your child’s life or your own.
10. Most children who live well with their voices have supportive families living around them who accept the experience as part of who their child is. You can do this too!

Recovery and Psychiatry: Dirk Corstens, Chair of Intervoice responds to Allen Frances

@yobluemama2 I do support Intervoice but also support meds when needed. Complementary-no one right way http://t.co/I5HBJIoZVZ
— Allen Frances (@AllenFrancesMD) September 16, 2013

Allen Frances responded to the open letter by writing, "Reconciling Recovery and Psychiatry: Response to Open Letter" for his blog in Psychology Today.  I find Allen Frances' criticism of those harmed by psychiatry insulting; frankly, I find his professional posturing in this instance, resembles juvenile bullying. Frances claims his criticism is motivated by concern for people with psychiatric diagnoses; apparently, he is afraid people may believe and be inspired by the hearing voices movement. Why is the idea that people with a diagnosis of schizophrenia may feel hopeful for recovery is something to fear? Frances states he is concerned that "trying to follow Ms Longdon's path might help some, but may harm others." 

I, on the other hand, am concerned that Frances did not "cover the waterfront of possibilities" accurately or ethically in his response. The hearing voices method, "could not possibly serve as a model for everyone who hears voices," so Frances claims he wants to prevent people from thinking Eleanor Longden's personal story is "a blanket condemnation of all psychiatric treatment"?!  I'm skeptical of the veracity of this claim since Frances is promoting the medical model as "essential," while decrying the harm done by "Big Pharma and the physicians who over prescribe."  My skepticism arises from Allen Frances's failure to disclose his collaboration with Big Pharma, the widely disseminated Expert Consensus Guidelines; which are still marketed as treatment standards meant to inform pediatricians, GPs, Internists, etc. to guide how they treat people using current psychiatric standards of care.  There's no concern about patients being disabled and killed as a direct result of being diagnosed and treated according to a consensus of expert opinions...

Doctors rely on guidelines to inform treatment decisions believing the guidelines are based on valid evidence of treatment safety and effectiveness; not a drug marketing strategy! 

I want to share the comment left by psychiatrist, Dirk Corstens, the Chair of Intervoice, in response to Allen Frances's blog post answering Intervoice's Open Letter:

Recovery and Psychiatry
Submitted by Dirk Corstens on September 17, 2013 - 12:41am.


Dear Professor Frances,

Thank you for your prompt response to the open letter sent to you from Intervoice. I would like to take this opportunity to continue the dialogue by offering some of my own reflections on your recent article.

You reiterate that people diagnosed with schizophrenia need medication, because you witnessed "dozens of lives ruined" by people coming off it. That is what I also learned during my psychiatric training, something that was systematically confirmed by colleagues. Proceeding with that mind-set, I also saw dozens of people struggling to come off medication, often unsuccessfully - but mostly due to lack of support (e.g., "when you don't take your medication we stop treatment").

After more than 25 years of experience working in clinical and social psychiatry, much reading, and much meeting and collaborating with many voice hearers, like Eleanor, who bravely took their own roads to recovery, I have definitively changed my mind and practice.

My present mind-set - my most accurate and honest conclusion about psychosis and medication - is that I really don't know who needs medication and who does not. I now believe it is better to prevent prescribing medication whenever possible.
Modern psychiatric practice tends to endorse that people with psychotic experiences - or what psychiatrists believe are psychotic experiences - rarely get access to psychological therapies, and almost never as a first-response treatment (despite robust evidence that it works). Without much communication, and almost automatically, antipsychotics are prescribed. As you may know, in some European countries young patients are even prescribed three different medications at a time. Modern psychiatric practice is ruled by a fundamental fear of psychotic experiences and the objectively false premise that antipsychotics eliminate it. There is abundant reason to change this mind-set: communicate, care, and support. Wait, create a safe environment. Wait and listen. Try to make sense of experiences. Only prescribe low doses when necessary and stop when possible.

The most important reasons:
- The diagnosis of schizophrenia is scientifically unreliable (see for example Richard Bentall and Mary Boyle - not anti-psychiatrists, but research-psychologists who think in a scientific way) and more stigmatising than helpful. And of course, there are no specific symptoms nor tests that confirm if the diagnosis is accurate or not.
- It is more and more uncertain that antipsychotics improve the long-term prognosis of psychosis. Many colleagues now state that the prognosis is not better or worse than before chlorpromazine was administered to patients. Functional recovery seems better when people don't take antipsychotics or only in low doses (e.g., Harrow, Wunderink, Mosher, Ciompi).
- There is good reason to believe that antipsychotics often do more harm than good (e.g., Breggin, Whitaker, Healy, Moncrieff, Lehmann).
- There are a lot of promising alternatives: Open Dialogue, Soteria, CBT, psychosocial therapies, hearing voices networks, self-help groups, trauma-informed therapies. These alternatives have existed a long time; are well documented; propagate the cautious and sparse use of medication - and give good results.
- More and more people who utilise psychiatric services openly state that they prefer a personal approach and need a say in their treatment and choice.
It is really exciting and rewarding to operate as a psychiatrist from this alternative mind-set with people who report subjective experiences that overwhelm them.

Eleanor's story tells us professionals that meeting the person behind the symptoms, communicating about the real personal story, creating a safe environment, and supporting family members and other allies are the most fundamental ingredients of good psychiatric care and cure. She didn't say what other people should do or not. It is not a story about medication at all - she only tells it didn't help her, and after taking it for a while came off it. It is a story of struggle and hope. A real and personal story.

I really don't understand why you feel the need to censor her.

Dirk Corstens, consultant psychiatrist
Chair of Intervoice
www.intervoiceonline.org

photo credit here

Hearing Voices: The movement that encourages you to talk to your voices

via The Project TV

Hearing Voices

The movement that encourages you to talk to your voices 
Monday, 4 June 2012

For many people with mental illness that hear voices, it can be an isolating and fearful experience that can literally derail someone’s life.

The voices can be male, female, old or young. There can be one or many, and often reflect the unexpressed emotional state of the hearer. Many assume that hearing voices is related to people who suffer from schizophrenia, but it can also occur to people suffering from other mental illnesses.

But a new movement is offering hope to sufferers, regardless of their diagnoses. The believe that the problem is not in the hearing of the voices, but the hearers inability to cope with the experience.

Tonight The Project takes a look at Hearing Voices, the society that offers a place for sufferers to connect with others and learn to speak to the voices they hear.

Intervoice website

Intervoice on facebook 

Intervoice on twitter

Hearing Voices  Movement Media Watch

Peter Hawes website Psych Patient No More 

picture credit