By Ron Unger, LCSW
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: some are 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.