As many of you know, I became an advocate for mental health reform because I could not get my son, Mike, help when he first became psychotic. I had rushed him to an emergency room only to be told that he was not sick enough. He was not considered an “imminent danger” either to himself or anyone else even though he was obviously delusional. Forty-eight hours later Mike was arrested after he broke into a house to take a bubble bath.
I was outraged and that experience caused me to begin campaigning for reforms in our current involuntary commitment laws. I think “dangerousness” is a horrible criteria. It is one reason why our jails and prisons are filled with persons whose only real crime is that they have a mental disorder. It stops loved ones from intervening before an ill person gets into trouble and it contributes to persons becoming homeless and dying on our streets.
While I have focused on changing involuntary commitment criteria, others have turned their attention to other reforms.
Dr. E Fuller Torrey and Xavier Amador sent out an appeal this week on the Internet that involves the American Psychiatric Association’s plan to update the DSM — psychiatry’s official inventory of what’s a mental disorder and what isn’t. Doctors, insurance companies and others have until April 20 to comment on whether binge eating, sex addiction and Internet addiction are in fact true mental disorders.
It’s odd to me that public opinion should play a defining role in determining what is and isn’t going to be recognized as an illness. I don’t remember anyone taking a vote about cancer. But until scientists invent a full-proof medical test that can accurately determine if a person has a brain disorder, there will always be disagreements about what is and what isn’t abnormal behavior.
Dr. Torrey and psychologist Amador want the APA to include anosognosia in the DSM as a symptom of schizophrenia and bipolar disorder. Anosognosia is commonly called a “lack of insight,” meaning that a person who is psychotic doesn’t recognize that he/she has a mental illness and, therefore, doesn’t believe he/she is sick or needs help. I remember reading a study once that suggested forty percent of persons having a psychotic breakdown did not realize that they were ill.
It is no surprise that the Treatment Advocacy Center, which Dr. Torrey started, is throwing its weight behind the campaign. You can read more about TAC’s position by visiting its webpage. I’ve not seen anything from the National Alliance on Mental Illness or Mental Health America about anosognosia. This might be too controversial of an issue for either of them to address, which is a shame. If I am wrong, someone please let me know.
Because I am not a psychiatrist, I do not know the medical basis for anosognosia. But what I do know is that Mike was unaware when he was psychotic that he was sick and needed help. It strikes me that this “lack of insight” is something the APA needs to thoughtfully consider.
As always, these reforms are merely the first step in improving our system. None of them will work if we don’t have adequate community mental health services that can actually help people recover, as well as, modern hospital facilities where people who are severely ill can get emergency care and help before being linked to community care.
Here is the appeal that Drs. Torrey and Amador released.
If you have an opinion on this, please share it.
Dear Friends,
Please see below Dr. Torrey’s note on how you can help to influence the DSM V process. Right now, there is no proposal to measure insight in persons with schizophrenia or bipolar disorder much less require that clinicians diagnose a subtype (with or without insight or with or without anosognosia). Such a requirement will drastically change treatment plans and hospital discharge plans. If a doctor has to diagnosis a lack of awareness of illness, then s/he is ethically obligated to address this problem, this symptom and the nonadherence to treatment it causes. Rather than simply send the person on their way with a prescription they will never fill. I hope you will comment on the website Dr. Torrey reccomends below.
We don’t have much time as the deadline for public comments is less that one month away. Please look at the two articles linked in the column to the right as they will likely be helpful to you .
Best wishes,
Xavier Amador
Dear Friends,
We should encourage Treatment Advocacy Center (TAC) supporters to comment on the inclusion of anosognosia as a symptom of schizophrenia in DSM-V. The briefing paper (“Impaired awareness of illness: anosognosia, attached) on the TAC website is useful as background, as is also the paper by Xavier Amador in the summer 2009 issue of Schizophrenia Digest (attached). Comments can be made on the APA DSM website . Comments must be made before April 20;after that date, the APA will not accept any more comments. I suggest that people who wish to do so should suggest that anosognosia be included under the category “Related Clinical Phenomena in Psychosis,” since it also occurs in bipolar disorder. I would stress that anosognosia is a common phenomenon, occurring in approximately half of all individuals with schizophrenia and almost half of individuals with bipolar disorder. Furthermore, the biological basis of anosognosia has been well established, as has also its association with other psychological abnormalities. In summary, anosognosia is a major symptom of schizophrenia and definitely should be included in the revised DSM, due to be published in 2013. Incidentally, I also agree with the proposed deletions of schizophrenia subtypes; they are not very useful
Dr. Fuller Torrey
About the author:
I do not believe there is such a thing as anosognosia. Those of us with a mental illness may become confused and delusional. We may, in fact, lack insight into our behavior. That does not prove, however, that there is something called anosognosia.
When your son Mike became “psychotic”, it was the lack of insight on the part of his treating psychiatrists to search for and treat the underlying medical condition that caused him to become psychotic.
Mike was immediately labeled with Bipolar Disorder/Manic-Depression.
Ask yourself, did he suffer from mood-swings prior to this incident?
Mike became psychotic because of a physical illness.
Mike became Bipolar because the DSM labeling process is nothing more than a Rubber Stamp Approach that makes life easy for “pill pushers”
The teams of medical doctors involved in putting together the DSM seeking public opinion on how to label those of us deemed “abnormal” are obviously confused themselves and are suffering from anosognosia.
Anti-anosagnosia treatment for psychiatrists should include doing some research on underlying conditions that manifest as psychosis and watching the TV show House.
As stated in an article “About Poor Insight and Diagnosis,” by Dr. Xavier Amador, there have been many scientific research studies that prove that anosognosia does exist in individuals with severe mental illnesses such as schizophrenia and bi-polar disorder. Anosognosia was included in the DSM-IV-TR (Text Revision) edition based on scientific consensus, by “bringing together experts from around the United States and overseas to review the research and independently review the [proposed] text….” After a peer review and independent review by experts on the APA Task Force for the DSM-IV-TR, it was determined that “a majority of individuals with schizophrenia lacked insight into having a psychotic illness and that this problem was a manifestation of the illness itself rather than a coping strategy.”
Additional scientific research studies are also listed on page 32 of Dr. Amador’s book “I Am Not Sick I Don’t Need Help!” Just to name a few of the sixteen studies sited: Morgan and David (review in Insight and Psychosis; 2nd Edition; Drake et al. Schizophrenia Research, 2003, Bucklet et al. Comprehensive Psychiatry, 2001; and Smith et al. Journal of Nervous and Mental Disease, 1999.
An excellent source of information on anosognosia can also be found on the Treatment Advocacy Center’s web site: http://www.treatmentadvocacycenter.org/index.ph… (this same information is also posted on NAMI National’s web site.)
Can you provide information about where on its site the American Psychiatric Association has listed anosognosia? It doesn't come up in a general search, and I can't find it under schizophrenia.
Thanks.
My sister lost her life because of anosognosia. She stopped taking her meds for schizophrenia a few years ago and deteriorated quickly. She did not believe she was sick and thought everyone around her were the sick ones. She was extremely delusional and it was incredibly frustrating and wore on the whole family. She froze to death on a concrete floor in the back of her fathers old house she broke into thinking it was still hers. Please read her story in our local paper that they did after her death. http://www.readingeagle.com/article.aspx?id=142135.
The reference to anosognosia is only found in the current manual, the DSM-IV-TR (the TR stands for Text Revision) version which was published in 2000. The following information is found on page 304: “A majority of individuals with Schizophrenia have poor insight regarding the fact that they have a psychotic illness. Evidence suggests that poor insight is a manifestation of the illness itself rather than a coping strategy. It may be comparable to the lack of awareness of neurological deficits seen in stroke, termed anosognosia. This symptom predisposes the individual to noncompliance with treatment and has been found to be predictive of higher relapse rates, increased number of involuntary hospital admissions, poorer psychosocial functioning, and a poorer course of illness.”
Does it matter whether we call it anosognosia or denial or whatever?
“A rose by any other name would smell as sweet”
If someone exhibits the symptoms should they be treated even if they refuse treatment?
What if they have the plague? Of course we would treat them, because, if not, there is a high risk that they would harm others.
This is the situation with the seriously mentally ill who refuse treatment. We do not need an attorney to define “harm”.
Should we not treat them because they have “rights” – what a silly idea – should someone have the right to harm others? – of course not.
A qualified doctor should be legally free to assess “harm” and to treat, with sensible medical (not legal) checks and balances (multiple opinions or whatever is deemed sensible by the medical profession).
I should have been more precise. Dr. Torrey has encouraged submitting comments to the APA during the public-comment period on conditions under consideration for DSM-5. I'm having trouble finding the precise page on which to submit comments. The comment box is generally on the page were the condition is listed, but I can't find anosognosia on the APA site. Can you help?
Diagnostic recognition of anosognosia in the DSM-5 will have many benefits to the mentally ill and those who love and care for them. In addition to the ones already mentioned:
(1) It will stimulate funding for more research into the condition. The big research NIH grants are skewed toward research on conditions already in the DSM (classic Catch-22). Since evidence is the best basis for accurate assessment and appropriate treatment, more research will promote better diagnosis and care.
(2) It will establish diagnostic standards for anosognosia. The DSM is far from a perfect reference work, and diagnosis of mental illness is notoriously imprecise. Nonetheless, research-based diagnostic standards will foster more accurate and consistent recognition of anosognosia regardless of where or by whom patients are being evaluated.
(3) It will result in co-recognition by the World Health Organization, publisher of the diagnostic bible used by most of the rest of the world. Co-recognition will improve the likelihood of accurate diagnosis and appropriate treatment of anosognosia in people with schizophrenia and bipolar not only in the US but worldwide.
Anosognosia is not good for all. Mike was ill. He was immediately labeled with Biopolar disorder.
I belief that We don’t have much time as the deadline for public comments is less that one month away. Please look at the two articles linked in the column to the right as they will likely be helpful to you .
I belief that We don’t have much time as the deadline for public comments is less that one month away. Please look at the two articles linked in the column to the right as they will likely be helpful to you .
Is third-stage alcoholism considered a mental illness? I’ve heard testimony from many recovering alcoholics: They truly did not know they were ill until they were forced to give up drinking. It was only after their brains were cleared of the effects of alcohol that they could see how truly ill they had become.
After 20 years of experiencing with our family member his denial and inability to recognize he is experiencing an illness or his need for medical intervention….DMH’s & CMH’s are delusional in the sense they are not recognizing the numbers of individuals with this condition….lack of insight….anosognosia….WE KNOW it exists….those most vulnerable are not receiving timely mental health treatment due to their inability and denial of their illness as so noted by CMH’s to treat those most in need of their services….It should be noted as a legal offense when our loved ones are allowed to be discharged from state hospitals with no follow-up for medical observation and care….only to be allowed to decompensate to the point of harm to themselves as well as others…..only then does a system come into contact with them….the CRIMINAL SYSTEM…..
SHAME ON US….LETS CHANGE THIS NOW….
AMERICAN PSYCHIATRIC ASSOCIATION!!!!UPDATE THE DSM NOW TO INCLUDE ANOSOGNOSIA AS A CONDITION WHICH LEAVES SOME INDIVIDUALS WITH BEHAVIORIAL ILLNESS UNABLE TO RECOGNIZE THEY EVEN HAVE SUCH A DISABILITY!!!
The only evidence I have seen by Xavier Amador for Psychiatric Anosognosia is sketchy, conjecture, and rhetoric. I have seen no empirical data that supporst his claims. There are any number of reasons why people with mental illnesses don’t follow through with treatment, or don’t initially realize they are having symptoms. Amador admits this himself when he talks about his own experience with Depression. Psychiatric Anosognosia simply does not exist, and it should not be forced on an already taxed mental health system, and furthermore, it leads to prejudicial treatment of those with diagnoses of Schizophrenia and BiPolar Disorder. The Treatment Advocacy Website is providing flawed information, and the public needs to beware, lest any more of its agenda becomes law.