Anosognosia: How Conjecture Becomes Medical “Fact”

Sandra Steingard, MD
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Neurologists use the term anosognosia to describe a peculiar syndrome in which a person has a profound lack of awareness of an obvious deficit.  For instance, a person who has a stroke on the right side of his brain and is paralyzed of the left side of his body has no awareness of the problem. He might not recognize his left arm as his own. When given a page to read, he might only read the words on the right side of the page.  He would only put his shirt on his right arm but when asked if he was adequately dressed, he would answer, yes.  This phenomena is regularly associated with damage to the right side of the brain in the section called the parietal lobe.

In the 1990’s, a psychologist, Xavier Amador, began to use this term in the context of describing a person who was experiencing psychotic symptoms and did not believe that his problems were due to an illness.  For instance, if a person heard voices that no one else heard, he might conclude that he was communicating with dead relatives.  When his doctors or family told him that he was sick, he would disagree. Doctors would call this “lack of insight” and Amador was one of the first to appropriate the neurological term anosognosia to describe this.

There is a history in neuroscience of trying to apply what has been learned from studying the cognition and behavior of people who have had strokes to develop a more general understanding of the connection between brain function and behavior.  In that spirit, there have been multiple studies to address whether there were changes in the brains of people who were psychotic and were described as having a “lack of insight” that were similar to the changes found in people who had right hemisphere strokes.

Readers on this site have wondered how the notion of a “chemical imbalance” could have been accepted by so many when the research did not actually support the concept.  A recent paper from the Treatment Advocacy Center that summarizes studies of anosognosia in psychosis gives some clue as to how this type of thinking becomes entrenched and accepted.

The paper reviewed 18 studies of brain imaging of people who were identified as having this syndrome.  This is from the conclusion to that study:

Regarding localization, it is now clear that anosognosia is not caused by damage to one specific area. Rather a person’s awareness of illness involves a brain network that includes the prefrontal cortex, cingulate, superior and inferior parietal areas, and temporal cortex and the connections between these areas. Damage to any combination of these areas can produce anosognosia, but damage to the prefrontal and parietal areas together make anosognosia especially likely.

Anosognosia, or lack of awareness of illness, thus has an anatomical basis and is caused by damage to the brain by the disease process. It thus should not be confused with denial, a psychological mechanism we all use.

This conclusion, which will now likely be repeated in TAC publications and elsewhere as a definitive statement of scientific “fact”,  involves some slight of words.  What the paper reports is that 15 of 18 studies found group differences between the study subjects and the controls but the findings were highly variable between studies. In the summary above, they mention that differences were found in multiple brain regions but the findings did not overlap much between the studies, i.e., although 15 studies had “positive” findings, they were often different findings in each study. My assumption from reading this review is that, despite this research, if one were to show a scan to a doctor, he would not be able to make a diagnosis from the scan.  In other words, the differences are subtle and do not clearly distinguish a person with “lack of awareness” of psychotic symptoms from any one else.

If one were to do a similar study of patients who had strokes and subsequently had the classic form of anosognosia, the findings would be strikingly different. In every study, there would be profound abnormalities in the brain and they would all be found in the right parietal lobe of the brain.  If you showed me a series of scans of people with left sided neglect due to strokes and those of people who did not have this syndrome, I believe I could easily pick out those with left neglect.  In this case the brain damage would be obvious and the resulting deficit would be easy to predict.

In the TAC summary, the use of the word “damage” is misleading.   Abnormalities – or in this case group differences – do not equal damage.  I am left handed. I imagine that with some types of brain imaging, my brain would look different from my right handed friend but that does not mean my brain is damaged; it only means my brain is different.

The final statement in this conclusion, that anosognosia “should not be confused with denial, a psychological mechanism we all use,”  makes no sense to me.  Why do they believe that there are no brain changes underlying the so-called psychological condition of denial?  In most of the studies reviewed, they would ask people questions while they were in the scan.  A sample question was “If someone said I had a mental illness they would be right.”   The type of “psychological denial” that the authors want to distinguish between this so-called anosognosia would presumably be something along the lines of someone who has lost a loved one but does not report being sad.  The only way one could conclude that the findings in the psychosis studies were different and somehow distinct would be to scan the brains of people who were found to have “psychological denial” and compare those to brain scans from individuals who had “good insight” and as well as those who are identified as having lack of insight of psychosis.

As with the notion of “chemical imbalance”, the term anosognosia has crept into the psychiatric lexicon.  Its use confers a certain sophistication of understanding and knowledge that is not supported by the data.

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43 COMMENTS

    • I think it’s worth noting that Xavier Amador is a *psychologist*, not a psychiatrist.

      As we work toward a transformation of the mental health system, I hope we remain cognizant of the danger of *blindly* creating another *monopoly* (one-size-fits-all) model of any kind.

      IMO, it would be disastrous to *blindly* trust psychology (or social work, professional counseling) to take over the role that will soon be left vacant by psychiatrists!

      More on Xavier Amador, Ph.D. – His work with the Treatment Advocacy Center and NAMI… (chilling) –

      http://www.xavieramador.com/

      My hope remains in non-professional and peer-run programs, such as Steven Morgan’s new Soteria House in Vermont!

      And with those *few* very decent human beings who happen to be mental health professionals, such as Michael Cornwall; but *not* the professions themselves.

      But I have no *blind* faith in *professionals* when it comes to deep human suffering, emotional distress. In short, we need to be careful with what we ask for… We may just get it.

      Duane

  1. Thanks for your excellent insight on the flawed concept of “agnosognosia.” The the concept of agnosognosia, invented by Amador to apply erroneously to schizophrenia, is particularly popular with family members who want to force their beleagered relatives to take their meds. Other people are impressed by the sound of this word; it’s complicated to say and therefore they assume there must be actual science behind it! As Thomas Szasz writes, a real disease is detected on the autopsy table. So far, schizophrenia brain imaging, except where medications have been introduced, continues to defy the disease explanation.

  2. As I’ve blogged before, NAMI Ohio uses this term to support their efforts to expand involuntary outpatient commitment (IOC). They believe, and some family members as well, that they’re “helping” the person who “can’t help themselves right now.” Establishing and/or expanding Involuntary Outpatient Commitments is part of a national strategy involving NAMI National, some State/Local NAMI, TAC and others.

    Thanks Dr. Steingard for your blog. It will help in our efforts to defeat IOC in Ohio.

  3. What term could we create to describe the copycat behavior psychiatrists adopted to assert themselves as practitioners of a *medical* specialty? The obvious delusional and grandiose thought processes are easy to spot, but there should be just one simple word that captures the phenomenon that has given so much credence to a fabricated body of knowledge. Maybe when we have identified this behavior- with a *term* , we can have more meaningful discussions about the aspect of human nature appearing in the 20th century that has caused severe degradation of human beings, and destruction of human lives. Historians, like Arnold Toynbee, have referred to the 20th century as the “Century of Death”. I think the roots of ‘our demise” can be found in the rising power of psychiatry— as a legitimate medical specialty; that gained power through the lies told by the first group of medical doctors who chose psychiatry because they feared they would buckle under the pressure of using their education and training to save lives. These new medical school grads could *talk the talk*, but lacked something..?? and so chose the field where they could hide their shortcomings and avoid the guilt of failure.

    I don’t believe last centuries “father’s”/pioneers of biomedical psychiatry started out as *evil incarnate*, but that IF one continues to feign expertise one does not have, or knowledge one cannot connect to a credible source, and exhibits ______, one will become *evil incarnate*; that ,is showing the pathology of divisiveness and unreasonable attachment to difference as opposed to perceiving the commonalities that bind all humans.

    Evil= to divide, create divisions amongst people…
    Psychiatry is rooted in its division from *reason*, *knowledge* *humanistic practice of healing*—, but most of all the great DIVIDE between itself and MEDICAL science/practice.

    That psychiatrists would try so hard to imitate the heroic achievements of their fellow MDs— deserves a special term. Maybe then we can determine what kind of *help* they need 🙂

  4. What’s the word when someone sees what isn’t there?
    What’s the word when someone cannot see what is there?

    Hmm. This got me thinking.

    Something has happened, but I have not realized it yet. Because I have not realized it, it is not real (even though it is). “It” will be made real when I finally *realize* what “it” is. All the while, the thing that has happened is real *to others*, but will remain “un-real” (un-realized) to whoever the “I” is.

    I once had a pack of dogs clutched onto my legs by their mouths. I didn’t know they were there until I tried to walk – I couldn’t feel them because I was so busy feeling something else. I think I still have a scar or two from their teeth.

    The term “mental illness” makes me feel sick, but I stop feeling sick when the two ugly words aren’t there anymore. Seriously, just the very mention of “mental illness” is *Revolting*. How can two words make me feel so ill? Brainwash, maybe?

  5. Thank you so much for this article. It is amazing to me that this bs is swallowed whole by so many…My son who has a diagnosis of schizophrenia has a tremendous amount of insight. Due to being mistreated by so many “professionals,” he has serious trust issues. The arrogance of some so called professionals who seem to believe that their license to practice or a degree means they do not need to develop a relationship with a person is stunning and seemingly prevalent. EARNING the trust of a person one hopes to help, should be a primary focus, but it is not. Supposedly the patients/person with a diagnosis lacks insight… HA! What a crock! It is ludicrous to expect anyone to share their thoughts/insights with anyone, professional or not, with someone who has not earned their trust. Thanks again for posting this; and for taking apart the myths pedaled by TAC among others…

  6. Sandy, you said “Why do they believe that there are no brain changes underlying the so-called psychological condition of denial?”

    I cannot accept that an opinion or misconception causes a “brain change,” except of course that it involves the same passage of signals from one neuron to another as any other idea. I find the theory that bad ideas cause bad “brain changes” to be alarming.

    Regarding the larger meaning of anosognosia, I highly recommend Errol Morris’s multi-part The Anosognosic’s Dilemma: Something’s Wrong but You’ll Never Know What It Is in the New York Times http://opinionator.blogs.nytimes.com/2010/06/20/the-anosognosics-dilemma-1/

    One can readily see how anosognosia, including the technique of denial, has extensive application in the delusions of contemporary psychiatry.

    • From the Errol Morris article:

      “[David] Dunning wondered whether it was possible to measure one’s self-assessed level of competence against something a little more objective — say, actual competence. Within weeks, he and his graduate student, Justin Kruger, had organized a program of research. Their paper, “Unskilled and Unaware of It: How Difficulties of Recognizing One’s Own Incompetence Lead to Inflated Self-assessments,” was published in 1999.[3]

      Dunning and Kruger argued in their paper, “When people are incompetent in the strategies they adopt to achieve success and satisfaction, they suffer a dual burden: Not only do they reach erroneous conclusions and make unfortunate choices, but their incompetence robs them of the ability to realize it….

      It became known as the Dunning-Kruger Effect — our incompetence masks our ability to recognize our incompetence. But just how prevalent is this effect?…”

  7. Sandy,

    When you conclude… or mark the place where you stopped thinking, by saying:

    “Maybe I am trivializing but I am talking about some passage of signals or something like that. My main point is that I believe it is incorrect to assume that something like “psychological denial” does NOT involve the brain.”

    I believe you are trying so hard to rationalize the view of the “brain” as a physiological source of “mind”… Change the brain, change the mind… is the physiological. biomedical model.

    The other ‘camp’, or my camp, believes the Mind- influences the brain… consciousness is key to neuroplasticity, for example…

    Subtle difference with PROFOUND implications…

    Ultimately, since we are dealing with beliefs and theories, one thing become abundantly clear: Psychiatrists should have no authority to impose or coerce in the name of their beliefs and theories… lacking insight into this “crime” may be the whole crux of the battle to dismantle psychiatry… lie by lie– one erroneous inference at a time!

    To clarify: You seem to discount the severity of harm that your profession has committed, while holding the reigns of “Authority” over that which is unknown, unprovable and very much the right of each of us to believe.

    Saying “oops!”… guess there isn’t real proof..yet… but soon there will be… or I believe there has to be… is fine, if you are just part of a dialogue and not actually sitting on the throne, making decisions as though you know what you can’t know. Actually, the longer you and other psychiatrists sit there… excusing and rationalizing and asking for more time and humanistic compassion… to ‘get your act together”… the more credibility you lose.. WHY? Because integrity is a matte of telling the truth, all the time.. and quite simply, the only truth I hear from you and other psychiatrists showing an interest in reform is that you believe you should remain in your positions of authority!…

  8. your post reminded me of a paper that was presented at a neuroscience conference (I did not write down the reference) to the effect that when schizophrenics report hearing voices, they register activity in the temporal lobe in contrast to talking to oneself during which there is no activity in temporal lobe. Thus, for those hearing voices it would be difficult to distinguish externally generated activity from internally generated activity. I recall evaluating a man several years back who heard voices. He developed a theory about his brain being infested with worms. I, of course, recognized that he would be labeled paranoid schiz by most mental health professionals. But I wondered at the time what type of theories I would come up with if I heard sounds I could not explain. I walked away thinking my client was pretty creative.

    • “your post reminded me of a paper that was presented at a neuroscience conference (I did not write down the reference) to the effect that when schizophrenics report hearing voices, they register activity in the temporal lobe in contrast to talking to oneself during which there is no activity in temporal lobe.”

      And this is the problem with the quack profession known as psychiatry. They hear one paper presented at a conference, and proceed to change their view on a matter. There are papers that say exactly the opposite.

  9. Sandra,

    One of your colleagues, a fellow Mad in America blogger, Steve Moffic, M.D. (aka, gadfly, ‘da man, He-He, Stevie), addressed this subject in his first post, ‘Why We Still Need Psychiatrists!’ –

    “Psychiatrists know that deficits in the frontal lobes of the brain can cause a condition called Anosognosia, which leaves many prospective patients unable to even realize and accept that they have a mental problem in the first place.”

    Link –

    https://www.madinamerica.com/2012/04/why-we-still-need-psychiatrists/

    He appears to have chosen to remain silent on this post.
    Interesting… but not surprising.

    There appears to be a considerable amount of *selective* reform taking place in psychiatry lately!

    Duane

      • Stevie, the phrasing you used is unequivocal:

        “Psychiatrists know that deficits in the frontal lobes of the brain can cause a condition called Anosognosia, which leaves many prospective patients unable to even realize and accept that they have a mental problem in the first place.”

        Sandy Steingard’s piece expresses doubt that this is something psychiatrists *know* — far from the uber-expert territory you staked out.

      • Hey-Hey… when you say “WE” have much more to learn about this subject”, I think that you are either;
        1) Speaking French, or

        2) Have a frog in your back pocket!!

        Upon more serious pondering of the learning style of psychiatrists, I tremble with fear. YOU ALL , as a defined, consensual, professional society have a propensity for claiming to know whatever *feels* right to you. And from that *knowing*, a paradigm of care has been created. This paradigm of medical harm, having no foundation in scientific fact, is proving as difficult to untangle as a hair ball in a shower drain.

        My one constant prayer :

        May psychiatrists be completely and utterly discredited, defrocked and dethroned before they claim to have *learned* anything else about the human brain/mind !

  10. Anosognosia goes beyond furthering just the ideology of Mr. Torrey. It creates a shield for pharmaceutical companies by claiming this damage is the cause of the disorder instead of admitting the possibility that their treatments have serious side effects. Also, anosognosia is the assumption of the thoughts and motivations of another person. This creates a legal gray area by asserting grounds for possible commitment with zero actual evidence to validate it.

  11. All so called psychoactive drugs affect insight. Especially drugs that don’t appear to induce a drug high. When someone is under the influence, its much easier for those around them to see and understand they are impaired. Those under the influence may also to some extent know that they are intoxicated. And that what has happened to them is a result of their intoxication.

    But there are other drugs, very powerful ones that produce no obvious high that do affect a persons thinking in profound ways.

    I like to think that in this respect, psychiatric medication, and tobacco are very similar. Tobacco, works by disconnecting thoughts and feelings, so a person cannot connect the dots in their life. What there thinking, feeling, and doing, are not all together but miles apart. Whats happening to their lungs, is not connected to them.

    The same is true of psychiatric medications, especially tranquilizers. This is why symptoms no longer push the medicated toward getting better, making changes in themselves and their life. They just can’t connect the dots.

  12. It is a convenient way to overcome objections to forced commitment though…

    Do they really think that I have ever been anything but aware that I was “different” than the other kids? Do they seriously believe every doctor that has read my diagnosis off hasn’t made me painfully aware of just how different I was? Do they think my mother, armed with this diagnosis and it’s key generalizations, didn’t also go out of her way to make this clear? If I ever forgot for a moment, I could just choose someone to share my diagnosis with and watch as their faces expression shifts to suspicion and then shame… as though they are ashamed for me because I clearly don’t know well enough to be ashamed for myself. Over the years, you become painfully aware in group settings because someone might realize how different you are. Like magic, this theory was established (also conveniently supporting the medical model and the assumption that mental illness is the result of damage to the brain.) More importantly, it turns any attempt to rebuke an accusation of a mental illness into a fallacy because the denial in itself is a symptom. I am extremely curious about these studies as well because Torrey has become increasingly blatant about creating research to support his claims out of thin air and depending on his air of condescension and his title to be enough to shut down any serious questions regarding his claims.

  13. While it’s been about 15 years since I read Xavier Amador’s book – I’m Not Sick and I Don’t Need Help, I thought he made a clear distinction between anosognosia and the resistance from individuals to the label of mental illness, medication and other treatments. A good portion of his book, as I recall, was about the fear and lack of trust many have after experiencing abuse – at times at the hands of various authorities or professionals – as well as family members. His LEAP -Listen Empathize Agree Partnership – program, which is also in his book is about helping individuals gain or regain trust. However, the last time I looked at a website about LEAP (over a year ago), I was disheartened to find people distorting the method and twisting it to trick, deceive and otherwise abuse individuals. I believe Amador started out with the best of intentions, but his book and program were hijacked by others whose motives may be less honorable.

  14. @ Sandra Steingard, MD

    Thanks for this article. I liked how you pinned the term “anosognosia” on a psychologist. I think in anyone’s hands it’s a powerful weapon. Although in a peculiar way it snugly slots into both sides of the argument, in that sometimes it is correct for a psychiatrist to make this accusation, and equally sometimes it is correct for a mad person to make this accusation (often to a psychiatrist or other mental health professional).

    Given that madness is perceived in both directions.