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NAMI Lies: A brief analysis of NAMI sponsored misinformation about “schizophrenia”

At least as of today, if a person Googles “schizophrenia recovery” the first link that is not an advertisement is to a document titled “Understanding Schizophrenia and Recovery” authored by NAMI.  (I would link to it for your convenience, but I hesitate to do anything that would further increase the Google rankings of a site that claims to be increasing “understanding” yet seems more dedicated to deliberately distorting the facts.)

I’ll start with a disclaimer.  While I am seriously challenging the national organization of NAMI that is responsible for the document under discussion, I am not expressing an opinion about any local NAMI chapter.  Local NAMI chapters have some degree of independence from NAMI national, and some of them are fairly progressive.  But hopefully NAMI chapters that wouldn’t spread misinformation will do more to challenge the national organization that seems only too willing to lie to the public.

NAMI’s propaganda efforts start within the title of the document, which is:  “Schizophrenia and Recovery;  What you need to know about this medical illness.”  NAMI is implying that it is a fact that “schizophrenia” is a “medical illness” and wants us to think that it is not in any way an understandable reaction to life events; but there are actually large numbers of both research studies and individual stories that point to the opposite conclusion.

The next sentence spreads more confusion, with its claim that “Schizophrenia interferes with a person’s ability to think clearly, manage emotions, make decisions, and relate to others.”  NAMI wants us to ignore the possibility that the person diagnosed with “schizophrenia” may be having problems with thinking, emotions, decisions and relationships because of what happened to them and how they were treated, and wants us to think that some theoretical “illness” called “schizophrenia” did it instead.

It is worth reflection on the likely consequences of telling someone that their experience and behavior is definitely being caused by a “medical illness,” and not by what has happened to them and how they chose to react to it.  A very probable effect of this sort of “explanation” is the creation of confusion within the person that in itself is likely to interfere with that person’s ability to handle thinking, emotions, decisions and relationships.  Of course, if the NAMI explanation creates more difficulties for the person, those difficulties will also be attributed by NAMI to the “illness” and not to the misinformation.

On page 2, it is stated that “Research has linked schizophrenia to changes in brain chemistry and structure….”  Reading this, one might assume that changes in brain chemistry and structure have been found to go along with “schizophrenia” in the same way that having high blood sugar goes along with diabetes, a condition NAMI suggests in the next sentence is “like” schizophrenia.  But this simply isn’t true.  Instead, researchers have only found that the people diagnosed with schizophrenia are LIKELY to have brain differences compared to the AVERAGE person who doesn’t have the diagnosis:  many people diagnosed with schizophrenia don’t have the differences, and some people not diagnosed do have the differences.  And it isn’t clear where all the differences come from:  someare likely caused by the drugs, others by being inactive, and most all of the differences have also been found in people who suffered abuse in childhood.

This last issue, abuse in childhood, is something NAMI clearly doesn’t want anyone to associate with “schizophrenia.”  NAMI states definitively in the next paragraph that “Schizophrenia is not caused by bad parenting….”  NAMI makes this statement despite what is now a very large amount of research that shows that abuse in childhood dramatically raises the odds of getting a diagnosis of schizophrenia in adulthood.  This applies to all types of abuse:  neglect, physical abuse and sexual abuse.  More severe levels of abuse have been associated with more severe levels of later psychosis in all the studies that looked for such a “dosage relationship.”

NAMI’s denial of the possible link between bad parenting, or abuse, and later “schizophrenia”  amounts to collaboration with abusers in denying the effects of abuse even for people who have been severely mistreated.  “You are just “schizophrenic,” you can’t blame your problems on anything that happened to you!”  Such denial is itself “crazy-making” and results in further emotional abandonment of already abused people; but of course if any “symptoms” result from the “schizophrenic” person encountering such lies, it will just be blamed on “the illness.”

In making the above statements, I am definitely not saying that all people diagnosed with “schizophrenia” had abusive childhoods or that it is definitely true that any NAMI parents are abusers.  There was a period of time when many clinicians would automatically blame parents when a child appeared to have “schizophrenia” but such approaches were seriously over-simplified.  More complex perspectives acknowledge that children may experience abuse and trauma growing up even when parents are doing their best to keep them safe, and in other cases, children may have a non-traumatic childhood but experience problems that lead to the difficulties labeled “schizophrenia” later in life.  So NAMI would have my full support if their point was that we should not assume that bad parenting caused any particular case of “schizophrenia,” but  when they claim that bad parenting is definitely never a cause, they appear to have deliberately lost touch with reality.  (The information on the connection between having an abuse history and a later diagnosis of “schizophrenia” is now widely enough know that I believe there is no way NAMI leadership could be unaware of it, which is why I am suggesting that NAMI is “lying” and not just misinformed or misunderstanding.)

NAMI goes on to declare in the next paragraph that “schizophrenia” is completely unrelated to “dissociative identity disorder’ (a disorder common among those severely traumatized as children.)  While NAMI is only repeating here what many so-called “experts” have to say, the truth seems to be that the same sorts of problems exist for people with both diagnoses, and the “voices” that often plague those diagnosed with “schizophrenia” are not fundamentally different from the “dissociated identity states” that plague those diagnosed with “dissociative identity disorder.”

Toward the bottom of page 2, NAMI states that “Medications are crucial to symptom control….”  The fact is that only some people find medications crucial to symptom control.  Many people find ways to completely recover and definitely do not need medications.  Others don’t recover but also find that the medications don’t make things better and may make things worse.  Of course, some people do find the medications helpful, but even in those cases it is often unclear if they are truly necessary; it may just be that the right alternatives have not been offered to some of these people.

I won’t even bother trying to sort out the distortions in the rest of the document.  It isn’t all misinformation:  NAMI mixes in some facts and some helpful details.  But the existence of so many false claims in just the beginning of a document indicates that NAMI is more committed to spreading propaganda than it is to the truth.

I hope that if enough of us comment on these sorts of lies, we can embarrass NAMI into cleaning up its act.  And by confronting NAMI, we can also make some headway in getting more accurate information out to those who need it, accurate information that is seriously overdue for most of those in our mental health system.

18 comments… add one

  • Ron,

    I agree.
    NAMI misleads.

    NAMI has strong ties to the pharmaceutical industry and conventional psychiatry… The organization serves as a marketing arm for the promotion of a failed paradigm of “care”… This is what NAMI has done so for years.

    NAMI, and the conventional psychiatric model is not only broken,
    Its’ shattered.
    It doesn’t need to be repaired.
    It needs to be REPLACED!

    Duane Sherry
    discoverandrecover.wordpress.com

  • A note of caution:

    Friends don’t let friends join NAMI.

    Duaen

  • Ron – Good call on not linking to the article. ANY link would give them google juice and a potential boost in rankings. It’s better not to link to it. – Ryan Nagy

  • Ron, I’ve sometimes faced the same problem, that I would have liked to link to some kind of utter nonsense, but didn’t want to contribute to it getting even higher search machine ranking. A friend recently told me that if you add: rel=”nofollow”> to the html, so it looks something like this: , search machines will not register when people click the link.

  • Hm, didn’t work. Another try: (usual html)(space)rel=”nofollow”>

  • I am one of the other people who have commented on NAMI’s crazy-making ways. See http://behindthelockeddoors.wordpress.com/2011/11/22/nami-national-alliance-on-mental-illness/

  • My brother’s schizophrenia may have been induced by using PCP and Acid, and there was no talk therapy, or even drug for that natter, that could bring him back to reality. For 33 years he lived in a world all his own. Instead of accusing people of lying, implying a sinister reason, and in this instance a reason to push drugs, why not take this from a different angle.

    There are people, who, for whatever reason, have lost touch with reality. Perhaps we could come up with a regimen of treatments that start with talk therapy, to determine if a life experience has caused a break from reality, and then go from there. Many people I have talked to, who live and function well with schizophrenia are thankful for the treatment they received, including medication. I realize the there many who would counter that, but treating everyone the same, that no medications should be used, versus everyone should be on meds, is just as damaging. Not one method works for everyone.

    To say that the brain chemistry of a person with schizophrenia is not different would be calling the NIMH liars as well. The brain chemistry is different, whether it is caused by a life experience or not. Therefore, classifying it as a medical illness is appropriate, in my opinion. My depression is an example of that, caused by extreme trauma. I have had periods when i have been on medications and i am thankful for that. I would call my depression a medical illness, because it altered my brain chemistry. Talk therapy, in combination of medications, which I am now off, helps tremendously. I will go back on medications if my depression re-ocurrs to the point where I, in consultation with my therapist, thinks it is necessary. I know people who are on and off anti-psychotics for schizophrenia and bi-polar disorder, who would agree with me.

    • Hi Ilene,

      I’m not sure how you come to the conclusion that “no talk therapy in the world” could bring your brother back to reality. Lots of people have used drugs and gotten into some pretty strange places, and then either found their own way back, or found their way back with help. Of course, there are others who haven’t done that, but I’m not sure how one could calculate that this is impossible, just because it hasn’t happened yet. Even when people have tried therapy of various kinds, there is always the chance that a different sort of therapy or therapies might make the difference. We just don’t know.

      While medication may be helpful to some, I am not much impressed by talk about how many people are “thankful” for medications, if these are people who have received a lot of misinformation and who have never been offered decent alternatives.

      You should be aware that there is no lab test that can determine that someone has “schizophrenia” and so no way to say that the person diagnosed with schizophrenia has brain chemistry that is different in any specific way. The same goes for depression. Of course, we all have brains, and brain chemistry, that is different from each other, and differs by time and situation, but that’s not unique to those with “schizophrenia.” Life experience and the way we interpret that experience alters brain chemistry, every day.

      To me, the most offensive part of NAMI’s document was the part where they claimed that bad parenting never has anything to do with who later has the problems that get called “schizophrenia.” I think that given all we know about the effect of child abuse on the likelihood of later psychosis, it is just inexcusable to tell adults who were victims of such abuse that their current problems have nothing at all to do with what happened to them. That’s just rotten behavior on the part of NAMI, and I will call them liars until they correct themselves on that point.

      • While I do believe that it is possible for most people to recover, or find their way back, whether it be using medications or not, this was not the case for my brother, unfortunately. In the 33 years he lived with schizophrenia, there was not one day when you could have a conversation with him that did not include a delusional comment, or it devolving into word salad if the conversation got any deeper than the weather or superficial comments. He was James Bond, he had 200 children born from his teeth, he was a character out of a James Fenimore Cooper novel, he was a multi-millionaire from making Kung-Fu movies in Korea, he was a professional football player, he had a camera implanted in his head, we transmitted thoughts into his head.

        He died of lung cancer three years ago, so it is now impossible to know that the 34th or subsequent years would have made any difference.

        • I’m sorry to hear about your brother’s death.

          Life and death both contain mysteries, and one of those is, how would a given individual’s life have been different if certain things had gone differently? I never assume that because someone didn’t recover, that they couldn’t have recovered if they had gotten the right sort of support. Of course, those of us trying to provide support don’t always know what people need, so if we are trying we shouldn’t blame ourselves for not getting it right, but I also think we shouldn’t conclude that recovery was impossible for someone just because what we did didn’t help the person recover.

  • Please read this…I would like to know how to address all of the science that backs up evidence of schizophrenia being a biological disorder.

    http://www.sciencedaily.com/releases/2011/12/111228111731.htm

    • Hi Ilene,

      While you may see the article above as evidence that “schizophrenia” is a “biological disorder” it actually only looks that way if you don’t look at it carefully.

      First, it is important to know that data like this is commonly reported with group averages being used in a way that easily leads the reader to assume that the data applies to each individual. That is, they find that on average the people diagnosed with schizophrenia have more tightly wound DNA than the average person without, and they report that “schizophrenia” is associated with tightly wound DNA. They don’t mention that many people with the diagnosis don’t have that sort of DNA, and many who don’t have the diagnosis do have the tightly wound DNA.

      A second thing this article failed to mention is that epigenetic changes (see http://en.wikipedia.org/wiki/Epigenetics ) are commonly caused by environmental things – like parenting (the wikipedia article for example talks about variations in rat parenting that has been shown to cause epigenetic changes in the rats.) Interestingly enough, there is also the possibility that epigenetic changes can be inherited, which might account for some of the transmission of trauma across generations. And we still don’t know how much such changes can reverse with corrective experiences.

      All sorts of human distress have biological components, but that doesn’t justify anyone in calling them “biological disorders.” If someone pointed a gun at you and threatened to kill you, your body would go through some profound alterations in biochemistry in the short term, and some of them might be persistent. But this response is not a “biological disorder” – it’s a lot bigger than that, and the real cause was the person with the gun.

  • Thanks for this post. Just want to add that NAMI’s rhetoric makes sense when you consider that they get most of their funding from drug companies and parents/family members who would be uncomfortable with any explanation that involved them. It’s not run by or even primarily for people with psychic difference, in my experience, but rather targets mental health professionals and caregivers.

    That said, there was a bunch of bunk family systems research done mid-century – not what you linked to – that tried to tie schizophrenia to “schizophrenogenic” mothers who failed to live up to stereotyped gender roles. It’s probably important that we put that to rest too, along with all the other misinformation about schizophrenia.

  • Its revealed (rather than disclosed by them long ago by themselves) that NAMI gets most of its funding from the Pharma Cartel).

    One can see that its programs, its words and its ideas are consistent what helps Pharma/Psychiatry actually are the exact same things that Psychiatry broadcasts.

    Not too much of a leap to figure that NAMI is Pharma. Air America airline, during the Vietnam war, secretively, was in fact a CIA proprietary airline.

    NAMI was probably created by Pharma/Psychiatry.

    When you speak of the schizophrenic mother myth – this is part of NAMI’s longstanding rhetoric…”Those bad old psychiatrists USED to be UNSCIENTIFIC, and told poor parents that their children (who had a Real SICK-ness and were AB-Normal) were Psychologically afflicted because of the negative familial environment of the Bad Parenting. This has been remedied, yea, now because We are SCIENTIFIC EXPERTS, we know that the children have a “Mental Illness” (Oxymoron). You poor parents can follow and believe. Away from those bad people who thought they were experts.

    Saying that those previous doctors (in NAMI’s Rhetoric) both did exist and that their ideas of the schizophrenigeneric mothering were wrong and harmful, as NAMI says… actually goes to validate all this ploy of theirs.

    And that the people in NAMI’s flock believe these statements… well, they are… just… There. Press releases crafted from above, tell what ‘they’ believe. They are not asked for input on what ‘they’ say. Like with the big Gun organization, or the organization for the Aged, and so forth – they are the constituency – and the leadership is the mouthpiece which speaks what these millions believe.

    • Hi Dan,

      I think that big pharma money is a big corrupting influence on NAMI, and it’s important to point that out. But I disagree with your notion that NAMI just made up the story about mental health people who automatically blamed parents, especially the “schizophrenogenic” mothers. This sort of blaming started as early as the 1940′s – see http://onlinelibrary.wiley.com/doi/10.1111/j.1545-5300.1964.00155.x/abstract

      I think that probably at least some of the original NAMI organization had a legitimate gripe with some of these simplistic parent blaming ideas. That doesn’t of course justify the radical swing to the opposite position of “blaming the brain” and drug company financed dogma about exclusively biological causes. The more rational middle ground sees “psychosis” emerging from the interaction of multiple causes, which only sometimes include bad parenting.

  • On NAMI’s never mentioned funding just google: Senator Grassley NAMI.

    NAMI Consitituency Betrayed by Vera Sharav, Oct 2009 – http://www.ahrp.org/cms/content/view/644/60/

    “Rather than putting its efforts on improving the quality of life with humane care for the mentally ill, NAMI has been instrumental in promoting the expanded use of toxic drugs even for use in children.

    And NAMI has been instrumental in lobbying state and federal legislators for unrestricted use of these highly toxic drugs and increased taxpayer funding through Medicaid. ”

    Before this breakthrough work by Grassley’s people there was MOTHER JONES investigory journalism piece,
    Prozac.org by Ken Silverstein, Dec 1999
    An influential mental health nonprofit finds its ‘grassroots’ watered by pharmaceutical millions

  • The debate is on1 Is mental illness caused by bad parenting or by biology.?A small child’s brain is formed in the early years of life. Any abusive situation ocurring at that time has the potential to harm a child’s neurological make up. It’s time to take the middle ground in this issue. Yes, there may be a biological explanation for psychosis. But perhaps part of the problem may be routed in a traumatic childhood. Other precipitating factors may enter in as well. We have enough toxins in our environment to bring about problems in early childhood development. I would suggest multiple causes, with bad parenting being a reality for some for not for all.
    Author Barbara Altman

    • Hi Barbara,

      I agree with you that there are a number of possible routes toward psychosis, and we shouldn’t assume that anyone had bad parenting just because they have psychosis. I do find that some kind of stress or trauma seems to play a key role for most people in developing psychosis, but bad parenting is only one source of that.

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