Posts tagged rethinking madness
Posts tagged rethinking madness
Mental Illness Parity Needs to Be the New Gay Rights
Opinion By Marilee Newell
While sexuality is an aspect of human nature to embrace whereas moodiness, depression, and paranoia may be harder to stomach, these are aspects of human nature too, and nobody — especially if they have no choice over their behavior — deserves to be the target of discriminatory laws and assumptions that make their lives even more difficult.
Mental illness and homosexuality are considered separate issues in 2014, but one important thing they have in common is a long history of cultural perception revolving around the individual’s “choice” to be gay or “choice” to be mentally ill. Retired psychologist Dr. Philip Hickey says that until 1974, homosexuality was even considered a mental illness by the American Psychiatric Association. Hickey calls homosexuality “the mental illness that went away” and says that mainstream vilification and persecution of homosexuals was done away with because “gay people gained a voice and began to make themselves heard.” Society has proved itself capable of deeper understanding and a broader concept of human rights in terms of gay parity and anti-discrimination laws over the past decade: now mental illness parity needs to follow suit in the cultural consciousness.
There was no scientific breakthrough justifying the removal of homosexuality from the DSM-II, according to Hickey — just a gradual shift in understanding. Hickey says that there are no mental illnesses, only complicated people — and yet, many people in the United States living with diagnoses recognized as mental illnesses are subject to the kinds of persecution and sensationalizing of their conditions that, were it directed at a different people-group, would be seen as outright bigoted.
There is much conflicting information about mental illness and so many unknowns. This complicates understanding. Some studies indicate that mental illness is caused by a person’s environment: rates of mental illness have shown to be higher in soldiers than civilians, for example. Other studies point toward a genetic cause, such as a father aged upwards of 45.
Many people living with mental illness feel afraid to come out of the closet and tell their friends and co-workers of their condition for fear of stigma. In the US, health insurance companies have denied coverage to the mentally ill. What will it take for people with mental illnesses to feel that they can make their voices heard in society? In the Gay Rights Movement, many prominent public figures and celebrities came out as either gay or in support of gay rights, speaking up for those who did not have a voice. In his 2006 documentary The Secret Life of the Manic Depressive, British actor and writer Stephen Fry explores his own journey living with a mental illness, as well as the story of Princess Leia actress Carrie Fischer.
The behavior of a person with a mental illness is often assumed to be the person’s fault: poor impulse control, bad choices, and drug use — without much insight on the part of the person making the assumption that many people with such illnesses use drugs and alcohol to slf-medicate. Additionally, many people may not have access to effective, legal treatments such as psychiatric evaluation and therapy. Even when people have access to therapeutic medications, many of the generic versions of these drugs are manufactured in China and India without adequate FDA regulation, in order to save US drug companies money. Some generics are essentially placebos with no active ingredients, and yet for many people insurance will not cover the more closely regulated name-brand drugs, which can cost as much as $250 per medication, per month. Seeing as 1 in 5 Americans is estimated to have a mental illness, what if society became as outraged over this lack of parity for America’s mentally ill as, during the recent Sochi Olympics, Americans became outraged by Vladimir Putin’s law against promoting homosexuality to minors? Americans were also shocked at Russia imprisoning people for being homosexual, yet unmedicated people with mental illnesses often end up in America’s for-profit prison system.
Perhaps this is because there is a strain running through American society that seems to be telling people mental illness is just an excuse for bad behavior. Fox News recently ran the headline “Kidnapping dad caught faking mental illness,” emphasizing a plea of mental insanity as a way of getting away with crimes. In literature, too, there is the notion that the mad woman in the attic is not really mad.
When former child star Amanda Bynes famously went through a psychotic break in 2013, many people, ignorant of what a bipolar or schizophrenic episode might look like, assumed from Bynes’s behavior that she was a simply spoiled star who had let fame and fortune ruin her judgment instead of a person in desperate need of compassion and help. When Bynes finally set fire to herself and her dog in a woman’s driveway, was placed under a psychiatric hold, and diagnosed with schizophrenia, the press finally had the decency to stop jeering at her downfall (although perhaps then only because in hospital she was away from the public eye).
A society that can move away from prejudices against homosexuality and towards an acceptance of gay parity laws should be capable of the move towards treating those who live with mental illness with acceptance, as human beings, with understanding of their reality. While sexuality is an aspect of human nature to embrace whereas moodiness, depression, and paranoia may be harder to stomach, these are aspects of human nature too, and nobody — especially if they have no choice over their behavior — deserves to be the target of discriminatory laws and assumptions that make their lives even more difficult.
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Op-ed: Mental illness: Another point of view
By: Richard Shulman
Richard Shulman, Ph.D., is a licensed psychologist and director of West Hartford-based Volunteers In Psychotherapy, which provides strictly private therapy to people in exchange for community volunteer work they provide, privately and independently, to the charity of their choice.
The Connecticut Forum will soon host a panel of celebrities and professionals to take “An Honest Look at Mental Illness.” The selected panelists’ consensus is that science has demonstrated that ‘mental illnesses’ are illnesses – biological diseases of bodily tissue… (and that pharmaceuticals are indispensable).
The problem: Prominent psychiatrists – the same people who promulgated this view – now admit that this isn’t demonstrated fact. Never has been.
The psychiatrist heading the National Institute of Mental Health criticized psychiatric “diagnoses” as lacking in both “validity” and any “objective laboratory measure.” His NIMH predecessor agreed: “psychiatric diagnoses seem arbitrary and lack objective tests; and there are no validated biomarkers…”.
Physician Marcia Angell, M.D., former editor-in-chief of the “New England Journal of Medicine,” concurs: “Unlike the conditions treated in most other branches of medicine, there are no objective signs or tests for mental illness – no lab data or MRI findings…” “I have spent most of my professional life evaluating the quality of clinical research, and I believe it is especially poor in psychiatry.”
A prominent psychiatrist admitted in the “Psychiatric Times” that the truism repeated to the public, about people’s problems being rooted in “chemical imbalances,” is an “urban legend” – “never a theory seriously propounded by well informed psychiatrists.”
But, isn’t this the very explanation most psychiatric professionals promote to the public? Based on past statements, there’s little evidence that this viewpoint, or the centrality of psychotropic medications, will be questioned by Forum panelists.
People who are upset, confused, overwhelmed are presumed “ill” – not emotionally distressed but medically sick.
For 20 years I served on the Institutional Review Board (IRB) of Hartford Hospital–Institute of Living, an ethics-in-research committee. IRBs ensure that potential research participants are told the truth about their medical or psychiatric conditions. “Informed Consent” is the medical ethics doctrine requiring that people be given accurate, understandable information; to make their own decisions based on honest assessments of their conditions, and the known risks/benefits of their options.
Researchers (whether funded by drug companies, government or others) are required to submit to IRBs their research designs, including comprehensive summaries of previous research. Buried in pages of background, these scientists repeatedly admit that the conditions we mislabel “psychiatric illnesses” are simply not documented to be diseases of the body – despite decades of attempts to verify biomarkers, specific lesions or physical/chemical malfunctions that might cause these “conditions.”
No reliable, reproducible research has ever demonstrated people’s sadness (“depression”) or a child’s rambunctiousness (“ADHD”) to be physically rooted in tissue abnormality; nor is there an identifiable brain disease called “schizophrenia.” Physical confirmation of “mental illness” is unavailable in research, hence absent in clinical practice.
Check any library. Medical pathology textbooks codify disease — verifiable physical/chemical abnormalities. “Psychopathology” lists theories – not established physical evidence. Markedly different rules of science, logic and culture apply in psychiatry compared to medical science. The proponents of biological theories, ascendant in psychiatry and pharmaceutical companies, downplay this illogicality.
Will Forum panelists tell you that the National Alliance on Mental Illness, the most media-quoted nonprofit source of “lay” information, was secretly majority-funded by the pharmaceutical industry, until a congressional inquiry forced NAMI to divulge their commercial backing?
Will panelists admit the non-specificity of psychoactive medications, their documented sedative, stimulant or placebo effects, and their often downplayed but expectable side-effects?
Will there be any mention of “Anatomy of an Epidemic,” which won the prestigious Investigative Reporters and Editors Prize for best book of 2010 (with judges’ comments, “an in-depth exploration of medical studies and science … [that] punches holes in the conventional wisdom of treatment of mental illness with drugs.”)?
Neglected, in the tunnel-vision search for the biological cause and nature of “mental illness” (and its misleading promotion as established fact) is human experience.
News outlets regularly publish stories of murder, sexual abuse, genocide, family conflict. We human beings, affected by overwhelming events, sometimes show our distress in complex, confusing ways. We may cope with painful, troubling personal difficulties and secrets, and usually work hard to keep those secrets — sometimes even deceiving ourselves.
We can and do help people with their private confusions, trauma, upset and conflict – without a “medical” paradigm that may interfere with their self-examination and improvement. A growing number of resources, including Greater Hartford’s Volunteers In Psychotherapy, help people by exploring and discussing people’s private lives under truly private conditions (with no reports to insurers).
You deserve a second opinion. An “Honest Look” must include the previously mentioned empirical findings… and must consider people’s troubling secrets, which often explain their initially inscrutable personal problems.
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Schizophrenic and wanting to connect
By Michael Hedrick
It takes work, a lot of work, to get better, but it can be done. It has been a long road from that first group therapy session. But life is nothing if it’s not a road.
I still remember the first group therapy session I went to after I got out of the hospital. I was 20 and had been diagnosed as schizophrenic after a road trip that took me from Colorado to the United Nations building in New York City, my mind riddled with notions of good and evil, demons and angels, and a determination to save the world. Now I was in something of a state of shock, having come to understand that amid the delusions and paranoia that swarmed through my head I was, in reality, insane.
A constant need to move felt like ants crawling over my skin, a side effect of the antipsychotic medications I had been prescribed. Every second of every day, I felt like clawing out my eyes and tearing out my hair because I just couldn’t sit still.
I held up my front, though. I smiled when I thought I had to and tried to be nice to people. Laughter, however, was not something that was possible, and wouldn’t be for a long time.
The group was a dual-functioning therapy technique to address both mental health issues and drug abuse. I had been assigned to it after disclosing that I had a marijuana habit. The doctors had told me that therapy groups were an integral part of my getting better. I agreed to go only to get out of the hospital prison and back home to my warm bed.
I sat in a circle with a melting pot of people. There was the construction worker still wearing dusty boots and clothes splattered with mud, and the depressed sorority girl, makeup and hair still impeccable. The two had formed a friendship over their history with methamphetamine. There was the quiet bipolar Hispanic man who spoke only in short staccato sentences, and the rotund marketing guy who introduced himself by saying his drugs of choice were food, cocaine and marijuana.
I sat there looking at them, hands nervously trying to find a natural position. I could tell they were thinking things about me, adjudicating me on my appearance and facial expressions. While they nodded in a sort of feigned acceptance, I knew they were going to go back to their friends and joke about me, the schizophrenic kid who looked weird.
When it was my turn to speak, I stood and told them in a quiet voice, almost so quiet you couldn’t hear the nervous wavering, that my name was Mike. “Hey Mike, welcome” rang the chorus in a strange unison. It seemed welcoming, but I knew they were waiting for their opportunity to strike. Summoning everything to get any words out, I told them that I had been an inpatient the previous week, where the doctors said I was schizophrenic, and that my drugs of choice were marijuana, cigarettes and, taking a cue from the marketing guy, food.
Having their eyes on me was a special kind of hell, as I stood there fidgeting and averting my gaze. They were all drilling holes into me, isolating my weaknesses and then laughing about them to themselves. They were wolves, chewing at and snapping my bones. I just wanted to get out, but I continued, and when I was done, I sat back down in the chair and lowered my head, refusing to say a thing or acknowledge anyone for the rest of the session.
How had it come to this? I had been happy in high school, popular even, unafraid of my own insecurities, unconcerned with what people thought of me. I can remember having friends from every different clique, every group and every grade. The ability to connect with people seemed so effortless then.
It’s a goal I’ve been striving to reattain for the last eight years.
When you have schizophrenia, the overarching plot of the experience is the inability to tell whether the things you are thinking are actually taking place in reality. Was that inflection in your voice a signal that I should be more friendly — or more reserved? Was that laughter I heard over my shoulder about me or something totally innocuous? These are the kinds of things I ask myself daily.
Recovering from mental illness is a process. It takes diligence in therapy, a strong support system and habitually taking your meds. With different drugs, the paranoia has calmed down, though it is still there, a reminder I’m still sick. Learning to accept what that paranoia was telling me and being all right with it, that I would still be the same person whether or not people thought negative things about me, has been a big part of my recovery.
Since that first group therapy session, I’ve worked harder than you can imagine trying to perfect a state of normal. Regaining the ability to relate to others has been a driving force. I’ve studied books on body language, manners, neuroscience and behavior just to get any small grasp on being a normal person. I know that if I do it right, and successfully connect with another human being, I feel giddy. But more often the interactions are a bit off, or a lot off, though not the end of the world.
Needless to say, it should be obvious that dating is hard for me. But I have friends, and they all know that I have schizophrenia and don’t seem to mind. They seem to accept that mental illness is a disease and not some defect of self. I can see the stigma lessening day by day, although a lot of people are still afraid of it. It’s nothing that a few little jokes and a sense of humor often can’t fix. Still, I know many others with schizophrenia who don’t have it as easy, who suffer every day, and I feel for them because I’ve sure been there.
It takes work, a lot of work, to get better, but it can be done. It has been a long road from that first group therapy session. But life is nothing if it’s not a road.
For more mental health news, Click Here to access the Serious Mental Illness Blog
[Article of Interest] High Deprivation, Population Density And Inequality Found To Increase Rates Of Schizophrenia
Article adapted by Medical News Today
Higher rates of schizophrenia in urban areas can be attributed to increased deprivation, increased population density and an increase in inequality within a neighbourhood, new research reveals. The research, led by the University of Cambridge in collaboration with Queen Mary University of London, was published in the journal Schizophrenia Bulletin.
Dr James Kirkbride, lead author of the study from the University of Cambridge, said: “Although we already know that schizophrenia tends to be elevated in more urban communities, it was unclear why. Our research suggests that more densely populated, more deprived and less equal communities experience higher rates of schizophrenia and other similar disorders. This is important because other research has shown that many health and social outcomes also tend to be optimal when societies are more equal.”
The scientists used data from a large population-based incidence study (the East London first-episode psychosis study directed by Professor Jeremy Coid at the East London NHS Foundation Trust and Queen Mary, University of London) conducted in three neighbouring inner city, ethnically diverse boroughs in East London: City & Hackney, Newham, and Tower Hamlets.
427 people aged 18-64 years old were included in the study, all of whom experienced a first episode of psychotic disorder in East London between 1996 and 2000. The researchers assessed their social environment through measures of the neighbourhood in which they lived at the time they first presented to mental health services because of a psychotic disorder. Using the 2001 census, they estimated the population aged 18-64 years old in each neighbourhood, and then compared the incidence rate between neighbourhoods.
The incidence of schizophrenia (and other similar disorders where hallucinations and delusions are the dominant feature) still showed variation between neighbourhoods after taking into account age, sex, ethnicity and social class. Three environmental factors predicted risk of schizophrenia - increased deprivation (which includes employment, income, education and crime) increased population density, and an increase in inequality (the gap between the rich and poor).
Results from the study suggested that a percentage point increase in either neighbourhood inequality or deprivation was associated with an increase in the incidence of schizophrenia and other similar disorders of around 4%.
Dr Kirkbride added: “Our research adds to a wider and growing body of evidence that inequality seems to be important in affecting many health outcomes, now possibly including serious mental illness. Our data seems to suggest that both absolute and relative levels of deprivation predict the incidence of schizophrenia.
"East London has changed substantially over recent years, not least because of the Olympic regeneration. It would be interesting to repeat this work in the region to see if the same patterns were found."
The study also found that risk of schizophrenia in some migrant groups might depend on the ethnic composition of their neighbourhood. For black African people, the study found that rates tended to be lower in neighbourhoods where there were a greater proportion of other people of the same background. By contrast, rates of schizophrenia were lower for the black Caribbean group when they lived in more ethnically-integrated neighbourhoods. These findings support the possibility that the socio-cultural composition of our environment could positively or negatively influence risk of schizophrenia and other similar disorders.
Dr John Williams, Head of Neuroscience and Mental Health at the Wellcome Trust said: “This research reminds us that we must understand the complex societal factors as well as the neural mechanisms that underpin the onset of mental illness, if we are to develop appropriate interventions.”
The creators of the Serious Mental Illness blog invite you to submit your visual art, photography, video work, music, poetry, collage, or short fiction to Art from the Edge.
Art from the Edge, a virtual gallery and resource center, is dedicated to art created in and about extreme mental states. It is an open and public world wide forum for artists to share their visual and written works and their personal stories with all those interested in the connection between creativity and “edge” states.
Much like art, which exists in a multitude of mediums and forms of expression, there are a plurality of “edge” states that inspire the artists who harbor them. For this reason, we leave the term completely open to our community’s interpretation, knowing from research and experience that this state could be driven by psychosis or trauma, or an altered state induced by drugs. It could be the offshoot of extreme depression or grief, or the aftermath of a spiritual or mystical state of consciousness.
Ultimately, we are interested in the artist’s individual experience and in his or her sense of what it is that drove the creative act.
[Article of Interest] Adolescent Stress Linked to Severe Adult Mental Illness
Working with mice, Johns Hopkins researchers have established a link between elevated levels of a stress hormone in adolescence — a critical time for brain development — and genetic changes that, in young adulthood, cause severe mental illness in those predisposed to it.
The findings, reported in the journal Science, could have wide-reaching implications in both the prevention and treatment of schizophrenia, severe depression and other mental illnesses.
“We have discovered a mechanism for how environmental factors, such as stress hormones, can affect the brain’s physiology and bring about mental illness,” says study leader Akira Sawa, M.D., Ph.D., a professor of psychiatry and behavioral sciences at the Johns Hopkins University School of Medicine. “We’ve shown in mice that stress in adolescence can affect the expression of a gene that codes for a key neurotransmitter related to mental function and psychiatric illness. While many genes are believed to be involved in the development of mental illness, my gut feeling is environmental factors are critically important to the process.”
Sawa, director of the Johns Hopkins Schizophrenia Center, and his team set out to simulate social isolation associated with the difficult years of adolescents in human teens. They found that isolating healthy mice from other mice for three weeks during the equivalent of rodent adolescence had no effect on their behavior. But, when mice known to have a genetic predisposition to characteristics of mental illness were similarly isolated, they exhibited behaviors associated with mental illness, such as hyperactivity. They also failed to swim when put in a pool, an indirect correlate of human depression. When the isolated mice with genetic risk factors for mental illness were returned to group housing with other mice, they continued to exhibit these abnormal behaviors, a finding that suggests the effects of isolation lasted into the equivalent of adulthood.
“Genetic risk factors in these experiments were necessary, but not sufficient, to cause behaviors associated with mental illness in mice,” Sawa says. “Only the addition of the external stressor — in this case, excess cortisol related to social isolation — was enough to bring about dramatic behavior changes.”
The investigators not only found that the “mentally ill” mice had elevated levels of cortisol, known as the stress hormone because it’s secreted in higher levels during the body’s fight-or-flight response. They also found that these mice had significantly lower levels of the neurotransmitter dopamine in a specific region of the brain involved in higher brain function, such as emotional control and cognition. Changes in dopamine in the brains of patients with schizophrenia, depression and mood disorders have been suggested in clinical studies, but the mechanism for the clinical impact remains elusive.
To determine whether cortisol levels were influencing dopamine levels in the brain and adult behavioral patterns in the abnormal mice, the investigators gave them a compound called RU486, known to block cells from receiving cortisol. (The drug is commonly known as the “abortion pill.”) All symptoms subsided. RU486 has also been studied in a clinical trial of people with difficult-to-treat psychotic depression, showing some benefits. “The mice swam longer, they were less hyper and their dopamine levels normalized,” Sawa says.
To shed light on how and why the mice got better, Sawa and his team studied the gene tyrosine hydroxylase (Th) and found an epigenetic change, essentially the addition of a methyl group to one of the gene’s DNA letters, limiting the gene’s ability to do its job, which is to create an enzyme that regulates dopamine levels. Without a fully functioning Th, dopamine levels are abnormally low.
Scientists have long studied gene mutations, permanent DNA changes that can tweak the normal function of a particular gene. But epigenetic alterations do not change the actual letters of the DNA sequence. Instead, they add a chemical group like methyl that can affect the function of the DNA. These changes can be transient, whereas genetic mutations are permanent.
Sawa says the new study points to the need to think about better preventive care in teenagers who have mental illness in their families, including efforts to protect them from social stressors, such as neglect. Meanwhile, by understanding the cascade of events that occurs when cortisol levels are elevated, researchers may be able to develop new compounds to target tough-to-treat psychiatric disorders with fewer side effects than RU486 has.
[Article of Interest] Some Observations of Soteria-Alaska
By Daniel Mackler
I write this piece from Anchorage, Alaska, where I am presently filling in as the executive director of Soteria-Alaska while their founding executive director, Susan Musante, is on sabbatical. Soteria-Alaska, a program designed to follow Loren Mosher’s California Soteria model from the 1970s and early 1980s, has been up and running for the past three years. Soteria-Alaska is a house, staffed around-the-clock with gentle, open-minded nonprofessionals, with five beds for people experiencing psychosis. The basic idea is that people can live in the house for about six months or so, give or take, in order to work through or pass through their psychosis with little or preferably no psychiatric medication. Soteria-Alaska is a largely state- and grant-funded program open primarily to Alaska residents, for whom, if they are low-income, it is free.
In this article I will explore the work Soteria-Alaska does with clients — known as residents — and assess the quality and success of this work. But first I will provide a little background. Loren Mosher, a psychiatrist who was the Chief of the Center for Studies of Schizophrenia at the National Institute of Mental Health, designed the original Soteria Project as an alternative to hospitalization for people experiencing a first-time psychotic crisis — one of the variety that would traditionally be treated with a locked ward, neuroleptics, a likelihood of restraints, and an eventual diagnosis of schizophrenia. All too often this traditional path resulted, and still results, in a lifetime of psychiatric disability, which the system considers normal, which is why it so often tells people experiencing psychosis for the first time that they need to “accept their illness,” “take their drugs for life,” and the like. However, the original Soteria House in San Jose, California put this idea to shame. Some sixty to seventy percent of its residents — all of whom, in the first several years of the program’s existence, came straight from San Jose’s local psychiatric emergency room — recovered fully. They moved on to productive, non-disabled lives, returning to school, getting jobs, and leaving mental health treatment and psychosis behind.
Soteria-Alaska was founded by Jim Gottstein, an Alaskan psychiatric survivor and Harvard lawyer who recognized Anchorage’s need for a similar hospital diversion program. Prior to the creation of Soteria-Alaska, there were no alternatives to hospitalization in Anchorage (or, for that matter, almost anywhere in the United States) that promoted the idea of full recovery without medication. Jim, along with others, created Soteria-Alaska with a clear vision of helping people recover fully. The main hurdle in implementing this, however, has been figuring out how to integrate a program with this vision into the mainstream biopsychiatric mental health system of Anchorage, which relies on heavy pharmaceutical interventions for its primary lines of defense. Most programs and treatment providers in Anchorage, as in the rest of the United States, don’t consider as relevant the concepts upon which Soteria is based, and may even think them dangerous or harmful.
The basic model of Soteria is a sort of “live-and-let-live” philosophy — one of “being with,” not “doing to.” Philosophically, Soteria avoids forcing or pressuring anyone to do anything. By conventional standards, one could argue that Soteria is not really even “treatment,” per se, rather, a program which gets out of people’s way and gives them the respect and freedom to go through their process on their own, albeit with the emotional support of others. Soteria views psychosis as a sort of crisis or emergency that is laden with meaning, and that people can derive value from their crisis while living in a community of respectful, caring, intuitive others. This really is a radically different model, concept, and philosophy than that of mainstream biomedical psychiatry. Yet the rub is that Soteria-Alaska, like the original California Soteria, gets its referrals from within the biomedical psychiatric system. So basically Soteria contradicts, but nevertheless has to get along with, the traditional mental health system. This is no small challenge.
This has affected the manifestation of Soteria-Alaska’s vision. The main area of drift from the vision is that Soteria-Alaska hasn’t ended up working with the type of people for whom it was designed to help. Instead, for a variety of reasons, Soteria has worked almost exclusively with people who are more “chronic” psychiatric patients, that is, people who, to varying degrees, have been in the psychiatric system for some time, have been exposed, in many cases for years, to psychiatric drugs (such as neuroleptics, mood stabilizers, antidepressants, and the like — and often combinations of them), have been psychiatrically hospitalized (sometimes multiple times), and may even be on government disability upon admission to the house. This is quite a departure from the original Soteria model, because compared with people experiencing a first psychotic break, “chronic” patients generally have far more serious, intractable, and complex problems, and as the result tend to be far harder to help.
Because of this, Soteria-Alaska, from the information I have gathered, has not experienced good recovery rates — insofar as Mosher’s original Soteria definition of recovery involved people getting and staying out of the mental health system and living independently in the community (and, I would also add, becoming employed or returning to school). Yet this is not to say that Soteria-Alaska has not had profound value as a program, or, like the California Soteria, as an experiment. First let me address the value of both Soterias as experiments. The California Soteria showed, beyond a doubt, and revolutionarily so, that people experiencing a first psychotic episode did far better living in an unstructured, homelike, protected, gentle, non-coercive house with other residents like themselves and with a staff picked for their interpersonal qualities and their lack of psychiatric training than did similar people if they received traditional psychiatric treatment.
The Soteria-Alaska experiment has, thus far, been a different one. The experiment here, though not formally defined as such, has, to my mind, been to see if a house structured and staffed quite similarly to the original California Soteria House would be effective in helping chronic mental patients get fully out of psychiatry. And, like any good experiment, a clear negative answer is just as good as a clear positive answer, which is why I consider this part of the Soteria-Alaska experiment to be a valid one, because I consider the answer to be clear: Soteria as a program is not successful in helping catalyze the full recovery of chronic mental patients. That said, it has been successful in catalyzing the partial recovery of several residents, beyond any expectation of traditional mental health. Nevertheless, it has not yet proven itself, in its first three years, at promoting any full recoveries in line with the original Soteria definition. Thus, my conclusion: Soteria is not a one-size-fits-all program for clients.
To backtrack, though, I would like to address the thread regarding the help it has provided people. Soteria-Alaska, after all, has been incredibly valuable to many, if not most, of its residents — even the most “chronic” ones. Many people have grown with the help of Soteria-Alaska — even in spite of the 2011 shooting of a former resident by another former resident on the grounds of Soteria. Overall, almost all residents at Soteria-Alaska have had a chance to experience freedom to make their own choices, to experience respect by the staff, to participate in a curious and welcoming community, to engage in healthy decision-making, to have healthy meals and healthy fun, to experience liberty to feel their own feelings, and to experience the opportunity to fall down — sometimes pretty hard — and to get back up again. Also, many residents have gotten the invaluable chance to explore and express the limits of their nontraditional behavior in a way that almost no other mental health program I have ever witnessed would tolerate — let alone for such a long period of time. As the result, many residents have matured profoundly as the result of their time at Soteria. And at least one Soteria resident even came fully out of a profound psychosis, off-medication, during the resident’s stay at the house.
In no small part I credit their founding executive director, Susan Musante, for this. She has fostered a community of staff, residents, former residents, volunteers, allies, and a board of directors who are passionate about the Soteria mission. Her gift with people has nurtured something truly special — something which drew me to visit in 2011 and drew me back again now. She has set a standard for authenticity and respect for personal choice that is rare in the modern mental health field. And it permeates the Soteria climate. The Soteria-Alaska staff are some of the most flexible, respectful people I have had the chance to work with. And so many of the residents with whom I have interacted, even ones who left Soteria in rage or anger or resentment or crisis, note this — and note the value they received from this. For many it has been the first time in their lives where they found a place that accepted them as they were and welcomed their evolving, and often terrifying, processes. I myself have gotten to speak with several former residents about this, because they phone Soteria all the time and just want to talk. Soteria is a place, and often one of the only places in their lives, where they feel safe to do that.
But I realized not long after I began my job here that the way Soteria-Alaska has manifested has come at a major price. For starters, it can be extremely taxing on the staff. It is not easy for them to interact so intensely, intimately, and authentically with chronically psychiatrized and institutionalized people, especially when these residents are coming off their psychiatric drugs and discovering their abilities to express themselves with almost entire freedom. Staff burnout has been a serious issue here. I would have to say that working at Soteria-Alaska is not a job I would reasonably expect someone to be able to do for a long period of time: perhaps a few years at the most. The reason, as I hypothesized to the staff shortly after I arrived, and to which they concurred, is that because they were working with chronic mental patients as opposed to people experiencing first psychotic breaks, yet holding nevertheless to the same Soteria goals of full recovery, they were working far harder for far less promising results.
Full recovery by a resident is a major boost for everyone because it sends positive shockwaves throughout the community. It restores all of our hope — and reminds us that this seemingly mysterious thing called psychosis is just another normal human phenomenon through which we can pass and come out the other side, and even come out stronger and wiser. But if people are not coming out the other side, or at best very rarely do to a full degree, who can expect people, especially long-time staff, to remain hopeful? Partial recoveries partially boost hope, but not nearly to the same degree as full recoveries. Thus, if staff don’t see full recovery, and especially if they don’t see it on a regular basis (which happened at the original Soteria House), they risk becoming demoralized and starting to think of psychosis not as episodic but as chronic.
That, as far as I can see, is the result of what the traditional mental health system’s near ubiquity has done to our perspective. Once people spend increasing amounts of time in the system and on these drugs, especially the heavy ones in the combinations so presently prescribed, their actual likelihood of pulling fully out of chronic patienthood goes way down. My experience as a therapist has shown me this loud and clear, and Robert Whitaker’s book “Anatomy of an Epidemic” outlines this same phenomenon from a scientific perspective. My belief is that full recovery is just too difficult to achieve for many chronic mental patients unless they have a program working for them that is a lot more intensive and structured than Soteria. Also, from what I have read, the people who end up heavily polymedicated for long periods of time have had their brains — and I use this word carefully, because I am not referring to their minds here — profoundly affected by these drugs. It seems to me that so many of these people have their own special, individualized versions of traumatic brain injury. And, in general, many need a lot more help than just love and kindness and respect and compassion of the Loren Mosher Soteria variety.
In this vein, Soteria was not really designed to be a medication withdrawal program. Medication withdrawal, even with only one resident withdrawing at a time, risks being simply too intense for a Soteria environment to handle, and even more so when we envision several people simultaneously going through drug withdrawal and a consequential rebound psychosis. Soteria’s work is hard enough; the drug withdrawal component, in my opinion, makes it just too hard. And converting Soteria into a successful drug withdrawal program would, in my opinion, require that Soteria sacrifice so much of its basic philosophy and character that its very Soteria nature would most likely be undone.
For that reason, my primary goal during my short tenure at Soteria-Alaska has been to try to connect Soteria with the residents for whom it was designed: people experiencing a first psychotic episode. This is easier said than done — which, to be fair, is what everyone told me when I arrived. Some even told me that such people no longer existed, because, according to them, most everyone with “problems” in Alaska gets medicated, to one degree or other, in childhood nowadays. But I didn’t entirely believe this — because I have met some adults in Alaska experiencing first breaks, heard stories of many others, and also met recovered people here who themselves passed through unmedicated first breaks.
As I see it, the main hope for Soteria-Alaska, if it wishes to hold to the original Soteria model and remain a sustainable, nonintrusive, non-coercive, unstructured, freedom-respecting program that shifts its course toward getting robust recovery rates from psychosis, is to forge a strong, ongoing, positive relationship with Anchorage’s local psychiatric emergency room and create a way to assist them in diverting at least some percentage of their patients experiencing a first psychotic episode away from traditional psychiatry and toward us. (I actually think an intimate connection with the local psychiatric emergency room would prove key to the success of almost any program that aspires to help people in first psychotic episodes.) I, along with Soteria’s directing clinician, have been working at developing this relationship with the emergency room staff, and so far, surprisingly, have been watching it blossom.
There have been some problems developing this relationship, though. One main one is that that they have, for some time, held a generally negative view of Soteria-Alaska. Their negativity seems to have arisen because their most primal contact with us has come from meeting some of our most conflicted residents when they are at their most troubled: when they have left Soteria, are in a state of florid rebound psychosis from medication withdrawal, and have returned, often against their will, to the psychiatric emergency room. Their staff also know the story of the 2011 shooting at Soteria, because it made all the local news. So they have looked at Soteria through a skeptical lens. And, from their perspective (even if I hold a different one), why wouldn’t they? They see their job as to help stabilize psychosis with medication, and they see us doing the exact opposite. Also, if Soteria were really helping many people recover fully, the psychiatric emergency room would be referring people to us, and not us to them. Thus, I have been focused on changing the direction of that one-way street sign.
What made me hopeful that this was possible was that even though, in my first month at Soteria, the psychiatric emergency room staff held a negatively tinged view about us, they remained open to referring to us. I found this curious, and I recently had the chance to ask one of their clinicians why this was.
Her answer, which I will paraphrase: “We’re just doing our best here, we’re often overwhelmed with intakes, and we have so few resources aside from medication and hospitalization. And some people who come to us really don’t want to take meds — and we don’t want to force people to do things against their wills, especially if they really don’t seem to be a danger to themselves or others. So Soteria, if it really might be able to help some people, could be a resource — and we want to consider it.”
This made me hopeful. But, as far as I saw, it also meant that Soteria-Alaska had to change some of its ways. We had to make the house a safer, more respectful, more welcoming place for people experiencing first-episode psychosis. In some ways Soteria-Alaska, as it was manifested when I arrived, was not always so welcoming. Chronic mental patients, especially if they were coming off heavy, long-prescribed psychiatric drugs, could be very disruptive to the atmosphere of the house for a very long, and even seemingly indefinite, period of time. I know that the original Soteria House in California worked with a lot of people who could be disruptive (window-smashing, violence, etc.), but it’s my understanding that these disruptions, however major, didn’t usually last that long: they were measured more in days, perhaps several weeks. At Soteria-Alaska these disruptions, including episodes of ongoing violence, destructive of property, threatening behavior, and, not least of all wild, super-intense, and very difficult-to-reach rebound psychosis, could last for endless months — and if given a chance, could last even longer. This can have a serious negative impact on others’ recovery.
For this reason, I suggested and the staff agreed that for the first couple of months of my tenure here we only accept new residents who are experiencing a first psychotic break, or at the least something very close to it. This was a high-pressure plan, as it entered us into a waiting game: to see if we could build a relationship with the local psychiatric emergency room, and perhaps with other potential referral sources, like the local universities’ counseling services, quickly enough to find appropriate residents before we ran out of financial resources.
Yet, as I noted, things, at least preliminarily, have begun to blossom for us. In the last month the psychiatric emergency room has sent us one person whose life situation rather closely fit within the criteria of our mission and another whose situation fit it perfectly. Also, five weeks ago the local psychiatric hospital, with whom we also shared our new, clearly-defined mission, referred us another person who was very close to meeting our mission’s criteria, though this person had been on neuroleptic medications for a few days. We accepted all of these young people, and so far they have all been living successfully at Soteria. It is too soon to know exactly how Soteria will work for them, but so far one thing is clear: it’s not not working!
Regarding these three new residents, one other key thing that I have observed is that none of them has been going through something so commonly experienced by past residents of Soteria-Alaska: severe psychiatric drug withdrawal. And all three of these new residents stopped taking their psychiatric medications by choice. The two residents who came from the psychiatric emergency room had been on a neuroleptic for less than two days, and because of that had no noticeable effects from stopping taking it at Soteria. The other resident, who had been taking a neuroleptic for slightly less than a week, experienced some disturbed sleep from stopping the drug — which the resident tapered, with our consultant psychiatrist’s supervision, over several days — but little else.
So in some ways we at Soteria have been feeling much less pressure — and much more hope. We now know that the psychiatric emergency room staff are willing send us people whom they feel are appropriate for our services. This is, to say the least, extremely exciting. I must admit that I didn’t feel overly optimistic about this two months ago, before we had any residents in our house who fit our mission criteria, because it was by no means assured that the emergency room staff, or anyone, would ever send us anyone appropriate. And I shuddered to consider what would have happened if no one connected us with anyone appropriate. Would we go back to square one? Would we have to change our program dramatically to accommodate a more psychiatrically chronic type of resident? Would we have to contract with potential residents that one condition for staying at Soteria involved them agreeing to stay on their medications?
At the time, I brought up this final possibility with several staff members at Soteria and to a person they all said that if people were required to stay on their psychiatric drugs as a requirement for residency at Soteria then they would quit their jobs.
I heard: “I couldn’t work at a place like that.”
And: “I would lose my heart for this work.”
And: “That goes against what I stand for. People need to be free to choose their life path.”
And I don’t disagree. But as I replied to them: “Then we need to make sure we continue to work with people whom we can actually help, and really not take on people who are chronically disabled by psychiatry and institutions.”
They agreed. Thus, the challenge remains — but at least now we have a bit more hope, and can see a bit more light at the end of the tunnel.
Meanwhile, we have used the new opportunities provided to us to strengthen our bond with the local mental health practitioners. We have shared our early successes with them, and they have made it clear to us that they wish us — that is, they wish the residents they sent our way — to succeed.
And to me this signals a whole new area of hope, on a broader societal level, for the following reason: if people who work in mainstream biological psychiatry are willing to consider referring people in severe psychiatric crises to a program that operates under both a completely alternative philosophy and model to their own, then I see hope for our world’s mental health system. If our local psychiatric emergency room is willing to refer to a program like ours, then other psychiatric emergency rooms elsewhere in the United States and the world must be willing at least to consider doing the same. For this reason, I do not feel like Don Quixote tilting at windmills. I feel the system can change.
But the first thing we, and other programs like ours, need to do is to document our results and show people that these alternative programs can and do actually work. We also need to be honest with ourselves about who we can help and who we can’t, and then we need give it our all to try to help those we can. And for those we feel we will be less likely to help, we need to look seriously into creating programs that will realistically and practically help them.
But the bottom line is that we need to keep building on our successes. This is the recipe for future hope.
[Article of Interest] I Was Adam Lanza
By David Frum
Recently, the Huffington Post published an article titled “I am Adam Lanza’s mother” by a woman named Liza Long. The article presents a picture of a 13-year-old boy who threatened his mother, sometimes going so far as to pull a knife on her, scream obscenities at her, and leap out of cars as they’re driving down the highway.
The rest of the world has reacted to the idea of such a child with horror and incomprehension. I sympathize with the horror. I can only wish that I shared the incomprehension. I understand, intimately, how Liza Long’s son feels. I was like him.
Like the author of that piece, Liza Long, my mother had no idea what to do about my sudden transformation (in my case, around 16) into a borderline homicidal maniac. Like her son, I used knives to try and make my threats of violence seem more real. Like her son, I would leap out of our car in the middle of the road just to get away from my mother, over the most trivial of offenses. Like her son, I screamed obscenities at my mother shortly after moments of relative peace. And worse than this poor woman’s son, whose mindset toward his peers we can only guess, I will admit that I fantasized multiple times about taking ordnance to my classmates.
By the logic which leads Liza Long to say, “I am Adam Lanza’s mother,” I have to say: “I was Adam Lanza.”
I don’t say this to get attention. It’s in the past, and I honestly would prefer to pretend those years of my life never happened. I’ve struggled hard for psychological healing, and I sincerely believe I’ve made progress.
However, given recent events, I have a warning to offer - and an obligation to offer it.
I hope that by giving this explanation, including why I was the way I was, the world will work out that it is possible for kids like me – kids contemplating the most awful crimes - to get better. Kids like me and Liza Long’s son are not psychotic lost causes. We can be stopped. We can be saved.
What was wrong with me exactly is a complicated subject – I’ll leave that for the next installment of this story. For now, I just want to explain what goes through the head of a potentially dangerous teenager. If you are the parent of a child like me, or know someone who is, please listen:
We don’t take our rage out on you because we hate you, or because you’re bad parents, or even because we’re evil. We take it out on you because we know you’re a captive audience. Often, you’re the only audience we have.
When I attacked my mother or got angry at her, it had very little to do with her and much more do with the feelings of rejection and helplessness and crazy that had been percolating in my head from the experience of isolation that comes with being different. And isolation makes us even more different than we started.
I’m not saying that angry, abusive, and dangerous teenagers just need to be hugged. There may well be cases where mental illness has set in and become so drastic that hugs alone would be comically insufficient. But what I am saying is that for me, at least, feeling loved and wanted by somebody was a precondition to health. If I had ever come to feel that my mother didn’t care about me, then everything would have looked hopeless. I would have given up on healing and started coming up with other, more drastic measures to make the world stop hurting me. Because of the way the media covers these events, it wouldn’t have taken a genius to figure out that for a social outcast of my stripe, there really was only one way to make the world stand up and take notice. My mother was the last line of defense that stopped it from getting that far.
Maybe a parent of a difficult child will read this and think, “I have made every possible effort to show my love and support – and my kid is still a little monster.”
The problem is that what is obvious to a normal adult is not always obvious to an abnormal child. Children like me will look for reasons to ignore love, especially if we feel the people who love us are also hurting us.
That seems to be what happened between Nancy and Adam Lanza. Nancy Lanza had spent time volunteering at Sandy Hook elementary. She also, understandably, had sought to have Adam involuntarily committed. Those two facts together seem to have led Adam to the conclusion – perfectly logically from the point of view of a kid like him and like me as I then was – that his mother cared more about the children of Sandy Hook than she did about him. In his reaction and rage, a shooter was born.
Parents, I cannot stress this enough: the healing process starts with you. Not the mental health community. Not the police. Not the government. Not the school. You.
I know it’s hard. I know that we’re asking for the most love when we are least loveable. I can only promise that we – or some of us – will sooner or later understand and recognize the heroism of what you did.
If you throw your child away like a broken toy, or treat them like someone else’s problem, they will be lost altogether. Your child may be too far gone for you to fix alone, but that doesn’t mean you can do nothing. My mother did almost everything, and if you ask her now, she’ll admit she was deadly worried about me ending up on the news - as worried about me as Liza Long is about her son.
She was right to be, because at one time in my life, I was Adam Lanza. I was Eric Harris and Dylan Klebold. I was Seung-hui Cho. I was James Holmes. I was Michael. But my mother held fast. She is the main reason why, unlike theirs, my experience can be described in the past tense.
[Article of Interest] Hooked on the Web: Internet Addiction
By Melanie Eckhoff
Recent studies of college students begin to clarify the relationship between Internet compulsion, depression and other serious problems.
Word is spreading about the dangers of texting while driving. But what about texting and walking? Walking into someone when you’re sending a text or playing angry birds on your iPhone may be rude, but at least it’s not fatal. Walking against the light and straight into the path of a moving car is another story. Internet addiction (IA) is a disorder with symptoms similar to those found in pathological gambling and, to a lesser extent, substance abuse. Colleges nationwide are seeing the negative consequences of IA on their students. Reports estimate that 8% to 13% of undergraduates are addicted to the Internet, resulting in serious harms including impaired psychological health, family and peer relationship difficulty and lower academic performance. In addition, a link has been found between problematic Internet use and depression in college kids. There is considerable confusion about what Internet addiction is (is not). Here are answers to common questions that may get you started:
1. How does a healthcare professional spot Internet addiction?
There are eight criteria for diagnosing IA; these symptoms include preoccupation with the Internet, unsuccessful efforts to control or cut back Internet use, staying online longer than originally intended and using the Internet daily as an escape. Internet addicts can spend anywhere from 40 to 80 hours per week online, with sessions lasting up to as much as 20 hours. Some observers suggest that given the nation’s high unemployment rate over the past five years, a growing number of people are turning to online experiences to fill the empty hours and to escape the anxiety and depression of not having a job or a paycheck.
2. Does what we use the Internet for make a difference?
Certain online activities, such as cyber-relationships and online gaming, seem to be particularly potent in inducing compulsive use. A recent New York Times article reported on a study finding that in a sample of 216 undergraduates, an individual’s scores on a depression scale rose with increased levels of sharing files (movies, music, etc.) and of email usage. The authors spoke of their intention to develop a software application that could be installed on computers and smartphones to monitor your Internet activities and alert you if depressive patterns emerge. (It is far from certain that many people would consent to such an intrusion into their privacy)
3. Do Facebook and other social networking create a feeling of togetherness?
Social networking is truly changing the way people communicate and interact with one another. Facebook is the largest social networks, and “Facebooking” has practically reached epidemic proportions among the college population. In a 2009 University of Missouri survey of some 1,000 college students, more than 95% had a Facebook page and 78% of them accessed the site at least twice a day. The study also found that in terms of relatedness, Facebook use is—somewhat paradoxically—correlated with both connection and disconnection. As for addiction, the researchers suggested that their subjects were habituated to a coping device that distracts from rather than resolves everyday problems.
4. Are texting and tweeting included in the IA diagnosis?
It is an open question whether the IA spectrum should include mobile, phone-based activities such as texting and tweeting. A 2010 study of college students in Pakistan found that many texted during class lectures; the majority of their texting activity occurred during late evenings and early morning hours. Several students said that their parents have tried to stop them from texting during meals and study time. If you’re the parent of adolescents in the US, you would probably not be surprised if one child texted the other one sitting next to him or her at the dinner table rather than bothering to vocalize, “Pass the chicken.”
Texting while walking can in fact be dangerous. A recent study of 138 college students using an online test found that when listening to music, texting or having a conversation on a smartphone, they were more likely to look away from the virtual street they were crossing than were the subjects with no distraction.
5. Are colleges being “taken over” by the online universe?
Not yet. But the signs are there: for example, college professors are using Twitter as a way to encourage discussion of subject matter among students, according to a 2010 US News and World Report article. Yet abuse of the Internet on college campuses has received relatively little attention, compared to substance abuse. And given that the Internet is an increasingly integral component of the typical college curriculum, college may be a risky environment for vulnerable students.
6. What are the risks if a person engages in abuse of both substances and the Internet?
In a study I conducted of 165 undergraduates (126 women and 39 men) at the New School for Social Research, in New York City, I found that students in the control group (i.e., no problematic substance or internet use) had fewer negative outcomes than those engaged in problematic use of both substances and the Internet. However, no differences were found between the students in the control group and students who had only one of the two habits.
The negative outcomes included psychological distress and decreased satisfaction with college. Yet not all online activities were associated with the same negative outcomes—and some actually correlated with positive results. Examples: online gambling, downloading files and texting were all associated with less academic success or other negative events. High college satisfaction was associated with chatting online and using the Internet for school.
Future studies might home in on behaviors like downloading or sharing files to learn why they particularly are detrimental. Answers could help mental health professionals gain insight into how best to work with these individuals. Some observers suggest that a lack of in-person social contact initiates the depressive symptoms, which in turn are exacerbated by continued face-to-face avoidance.
7. Are those of us who are past our college years at risk?
Age doesn’t exempt anyone from the problem since most of us rely on the Internet in our jobs and our home life. Ask yourself if your use is compulsive. Do you spend more time online than you originally intended? Do you go on Facebook because you prefer it to actual face-to-face contact? If combining Internet addiction with substance abuse can lead to more negative consequences for college students, the odds are that it will have the same effect on all of us.
[Article of Interest] We Are the Lucky Ones
By Cristie Gallagher
In the five days before Christmas, most children try to be on their best behavior, knowing that Santa is watching. Unfortunately, my daughter couldn’t do that. Like 1 in 5 Americans, she has a mental illness. This time, she got angry and kicked a teacher. So, I’ll be sitting home with my 10-year-old the day before Christmas break as she serves a one-day home suspension.
Most of the time, you would never guess that my daughter would react in a violent way. She can light up a room when she walks in it. She is funny and can engage anyone in a conversation. She is great with little kids and they love her. She loves dolphins, and the color teal, and books and art. But she also suffers from a brain disorder that makes her mood change and prevents her from always acting or reacting the way her peers do. She has been diagnosed with bipolar disorder, ADHD and anxiety disorder since she was 8 years old.
We are one of the lucky ones because we have advocated for our daughter and it has paid off. But it is hard work. When this happened yesterday, someone said to me, “but she was doing so well.” And that is what is so difficult for people to understand about mental illness. It’s instability. Our family lives a life of uncertainty. We never know when our daughter will have a raging tantrum or several days of mania or depression. When she will get so angry she will attack me, her younger brother, our little dog. We live a life with an emergency plan in place. Neighbors ready to come in a single call. The police on speed dial. Therapists whom we can contact in a crisis who respond. We are the lucky ones.
We are an upper middle-class family living in Fairfax County — one of the wealthiest counties in the country. I have a Masters degree in public policy, have worked in the Federal government and now work at George Washington University — and yet it has been my hardest job to be my daughter’s advocate and full-time care taker.
Our family has health insurance, yet none of our mental health providers take insurance. There have been weeks - -bad weeks, like the week after I had to call the police to our house after my daughter raged for two hours and there was nothing I could do to calm her down — that our entire family has to go to therapy and the checks add up. But we are the lucky ones, because we can afford that.
We are the lucky ones — we were able to find a hospital bed when she was in third grade and suffering from mania, harming herself and others and needing her medication regulated. We were able to access county services after she was hospitalized. We can afford to pay for all four prescription drugs my daughter is on, to pay for the respite care we so badly need to catch a short break and spend time with our six year old son. We have been able to find a public school with a good special education program for the emotionally disabled and are pleased with the support and education they provide. We are the lucky ones.
But there are many families who aren’t lucky. With 1 in 5 Americans living with mental illness, we know that there are parents and children who are suffering and not talking about it.
When we had to put our daughter in the hospital I wasn’t sure what to tell people. It’s not like people sign up to bring casseroles to the mentally ill. But I did tell them. I needed help. And they did come — they brought food and support.
I began to speak out. If my daughter had any other illness I would be screaming from the rooftop for help - so why not mental illness? The mental health system is horrible. I’m terribly afraid of what is going to happen as she grows older and we hit adolescence and the older teen years, much less her twenties when services are dismal. I must be prepared. I must advocate for her. We must do better for kids like her and families like ours.
When I went looking for a support group for parents of younger children with mental health issues in Fairfax County there wasn’t one. I couldn’t believe it. So I started my own. At our third meeting, 10 parents showed up. We were desperate for support and information. We were afraid for our children. Many of us have had knives pulled on us. Our younger children have been threatened. The police know us by name. Our children are in and out of hospitals and residential treatment centers. We are looking for names of good mental health care providers. And we need support because some days, as parents, we don’t know how much longer we can do this.
Our family is one of the lucky ones. But there are so many out there who aren’t.
I am speaking out because I want others to know that there are so many families like ours who are suffering. The system must change. It is unacceptable. There is work that needs to be done. My heart goes out to all of the families at Sandy Hook Elementary School. And all the parents of children with mental illness who ache for this country to do something now before this happens again.
[Article of Interest] Talk Therapy Touted as First-Line Treatment for Youth with Psychosis Risk
By Traci Pedersen
A small clinical trial led by an Australian researcher suggests that young people at very high risk for psychotic illness should engage in talk therapy as an initial treatment rather than take antipsychotic drugs.
Only about 36 percent of high-risk individuals will likely develop psychosis within three years, and many physicians are concerned about the prospect of treating everyone at risk with drugs, which come with side effects. Another concern is that individuals will carry the label of mental illness unnecessarily.
“This shows it’s quite safe and reasonably effective to offer supportive psychosocial care to these patients,” said study author Dr. Patrick McGorry. There is “no evidence to suggest that antipsychotic medications are needed in first-line” treatment, he said.
The trial included 115 patients of a clinic in Melbourne, Australia, for young people believed to be at “ultra-high risk” for a psychotic disorder such as schizophrenia. The study was open to people between the ages of 14 and 30 who met at least one of three criteria: having low-level psychotic symptoms, having had previous brief episodes of psychotic symptoms that went away on their own or having a close relative with a psychotic disorder along with low mental functioning during the past year.
The study compared three types of treatment: talk therapy focused on reducing depression symptoms and stress while building coping skills plus a low dose of the antipsychotic risperidone, or talk therapy plus a placebo pill or therapy emphasizing social and emotional support plus a placebo. The goal was to see how many patients in each group progressed to full-blown psychosis.
After a year, there was no notable difference between the groups, but about 37 percent of the patients dropped out of the study. McGorry, a professor at the Centre for Youth Mental Health at The University of Melbourne, said if the trial had included more people, significant differences between the groups might have come forth.
“The importance of detecting early signs and symptoms of a serious mental illness is not controversial,” said Matcheri Keshavan, M.D., a professor of psychiatry at Harvard Medical School. “But the best way of treating or preventing it remains controversial.”
The rates of going on to full-blown psychosis—which ranged from about 10 percent to about 22 percent—were lower in all three groups than in previous studies.
The reasons for this aren’t clear, but McGorry said it’s possible that more participants will develop psychosis after the 12-month study period ends. Many of the study participants were also taking antidepressants, which may have eased psychotic symptoms.
Also, as with many trials, most patients showed poor adherence to the medications used, which may have influenced the results, the authors note.
In a 2010 study, McGorry found that fish oil supplements might prevent psychosis in the same type of at-risk individuals. Going forward, “what is needed is some way of finding predictive biomarkers that can tell who might be at the highest risk,” said Keshavan. “We need to understand their brains.”
[Article of Interest] Is Facebook a Factor in Psychotic Symptoms?
By American Friends of Tel Aviv University
TAU researcher connects computer communications and psychosis
As Internet access becomes increasingly widespread, so do related psychopathologies such as Internet addiction and delusions related to the technology and to virtual relationships. Computer communications such as Facebook and chat groups are an important part of this story, says Dr. Uri Nitzan of Tel Aviv University’s Sackler Faculty of Medicine and the Shalvata Mental Health Care Center in a new paper published in the Israel Journal of Psychiatry and Related Sciences.
In his study, the researcher presented three in-depth case studies linking psychotic episodes to Internet communications from his own practice. According to Dr. Nitzan, patients shared some crucial characteristics, including loneliness or vulnerability due to the loss of or separation from a loved one, relative inexperience with technology, and no prior history of psychosis or substance abuse. In each case, a connection was found between the gradual development and exacerbation of psychotic symptoms, including delusions, anxiety, confusion, and intensified use of computer communications.
The good news is that all of the patients, who willingly sought out treatment on their own, were able to make a full recovery with proper treatment and care, Dr. Nitzan says.
Behind the screen
The Internet is a free and liberal space that many individuals use on a daily basis and a growing part of a normal social life. But while technologies such as Facebook have numerous advantages, some patients are harmed by these social networking sites, which can attract those who are lonely or vulnerable in their day-to-day lives or act as a platform for cyber-bullying and other predatory behavior.
All three of Dr. Nitzan’s patients sought refuge from a lonely situation and found solace in intense virtual relationships. Although these relationships were positive at first, they eventually led to feelings of hurt, betrayal, and invasion of privacy, reports Dr. Nitzan. “All of the patients developed psychotic symptoms related to the situation, including delusions regarding the person behind the screen and their connection through the computer,” he says. Two patients began to feel vulnerable as a result of sharing private information, and one even experienced tactile hallucinations, believing that the person beyond the screen was physically touching her.
Some of the problematic features of the Internet relate to issues of geographical and spatial distortion, the absence of non-verbal cues, and the tendency to idealize the person with whom someone is communicating, becoming intimate without ever meeting face-to-face. All of these factors can contribute to a patient’s break with reality, and the development of a psychotic state.
A changing social landscape
Dr. Nitzan and his colleagues plan to do more in-depth research on Facebook, studying the features and applications that have the potential to harm patients emotionally or permit patients to cause emotional harm to others. Some psychotic patients use the Internet to disturb people, abusing their ability to interact anonymously, he says.
Because social media are now such an important part of our culture, mental health professionals should not overlook their influence when speaking to patients, Dr. Nitzan counsels. “When you ask somebody about their social life, it’s very sensible to ask about Facebook and social networking habits, as well as Internet use. How people conduct themselves on the Internet is quite important to psychiatrists, who shouldn’t ignore this dimension of their patients’ behavior patterns.”
The discrimination and stigma associated with mental illnesses largely stem from the link between mental illness and violence in the minds of the general public, according to the U.S. Surgeon General (DHHS, 1999). The belief that persons with mental illness are dangerous is a significant factor in the development of stigma and discrimination (Corrigan, et al., 2002). The effects of stigma and discrimination are profound. The President’s New Freedom Commission on Mental Health found that, “Stigma leads others to avoid living, socializing, or working with, renting to, or employing people with mental disorders - especially severe disorders, such as schizophrenia. It leads to low self-esteem, isolation, and hopelessness. It deters the public from seeking and wanting to pay for care. Responding to stigma, people with mental health problems internalize public attitudes and become so embarrassed or ashamed that they often conceal symptoms and fail to seek treatment (New Freedom Commission, 2003).”
This link is often promoted by the entertainment and news media. For example, Mental Health America, (formerly the National Mental Health Association) reported that, according to a survey for the Screen Actors’ Guild, characters in prime time television portrayed as having a mental illness are depicted as the most dangerous of all demographic groups: 60 percent were shown to be involved in crime or violence. Also most news accounts portray people with mental illness as dangerous (Mental Health America, 1999). The vast majority of news stories on mental illness either focus on other negative characteristics related to people with the disorder (e.g., unpredictability and unsociability) or on medical treatments. Notably absent are positive stories that highlight recovery of many persons with even the most serious of mental illnesses (Wahl, et al., 2002). Inaccurate and stereotypical representations of mental illness also exist in other mass media, such as films, music, novels and cartoons (Wahl, 1995).
Most citizens believe persons with mental illnesses are dangerous. A longitudinal study of Americans’ attitudes on mental health between 1950 and 1996 found, “the proportion of Americans who describe mental illness in terms consistent with violent or dangerous behavior nearly doubled.” Also, the vast majority of Americans believe that persons with mental illnesses pose a threat for violence towards others and themselves (Pescosolido, et al., 1996, Pescosolido et al., 1999).
As a result, Americans are hesitant to interact with people who have mental illnesses. Thirty-eight percent are unwilling to be friends with someone having mental health difficulties; sixty-four percent do not want someone who has schizophrenia as a close co-worker, and more than sixty-eight percent are unwilling to have someone with depression marry into their family (Pescosolido, et al., 1996).
But, in truth, people have little reason for such fears. In reviewing the research on violence and mental illness, the Institute of Medicine concluded, “Although studies suggest a link between mental illnesses and violence, the contribution of people with mental illnesses to overall rates of violence is small,” and further, “the magnitude of the relationship is greatly exaggerated in the minds of the general population” (Institute of Medicine, 2006). For people with mental illnesses, violent behavior appears to be more common when there’s also the presence of other risk factors. These include substance abuse or dependence; a history of violence, juvenile detention, or physical abuse; and recent stressors such as being a crime victim, getting divorced, or losing a job (Elbogen and Johnson, 2009).
[Article of Interest] Thinking the Unthinkable
Three days before 20 year-old Adam Lanza killed his mother, then opened fire on a classroom full of Connecticut kindergartners, my 13-year old son Michael (name changed) missed his bus because he was wearing the wrong color pants.
“I can wear these pants,” he said, his tone increasingly belligerent, the black-hole pupils of his eyes swallowing the blue irises.
“They are navy blue,” I told him. “Your school’s dress code says black or khaki pants only.”
“They told me I could wear these,” he insisted. “You’re a stupid bitch. I can wear whatever pants I want to. This is America. I have rights!”
“You can’t wear whatever pants you want to,” I said, my tone affable, reasonable. “And you definitely cannot call me a stupid bitch. You’re grounded from electronics for the rest of the day. Now get in the car, and I will take you to school.”
I live with a son who is mentally ill. I love my son. But he terrifies me.
A few weeks ago, Michael pulled a knife and threatened to kill me and then himself after I asked him to return his overdue library books. His 7 and 9 year old siblings knew the safety plan—they ran to the car and locked the doors before I even asked them to. I managed to get the knife from Michael, then methodically collected all the sharp objects in the house into a single Tupperware container that now travels with me. Through it all, he continued to scream insults at me and threaten to kill or hurt me.
That conflict ended with three burly police officers and a paramedic wrestling my son onto a gurney for an expensive ambulance ride to the local emergency room. The mental hospital didn’t have any beds that day, and Michael calmed down nicely in the ER, so they sent us home with a prescription for Zyprexa and a follow-up visit with a local pediatric psychiatrist.
We still don’t know what’s wrong with Michael. Autism spectrum, ADHD, Oppositional Defiant or Intermittent Explosive Disorder have all been tossed around at various meetings with probation officers and social workers and counselors and teachers and school administrators. He’s been on a slew of antipsychotic and mood altering pharmaceuticals, a Russian novel of behavioral plans. Nothing seems to work.
At the start of seventh grade, Michael was accepted to an accelerated program for highly gifted math and science students. His IQ is off the charts. When he’s in a good mood, he will gladly bend your ear on subjects ranging from Greek mythology to the differences between Einsteinian and Newtonian physics to Doctor Who. He’s in a good mood most of the time. But when he’s not, watch out. And it’s impossible to predict what will set him off.
Several weeks into his new junior high school, Michael began exhibiting increasingly odd and threatening behaviors at school. We decided to transfer him to the district’s most restrictive behavioral program, a contained school environment where children who can’t function in normal classrooms can access their right to free public babysitting from 7:30-1:50 Monday through Friday until they turn 18.
The morning of the pants incident, Michael continued to argue with me on the drive. He would occasionally apologize and seem remorseful. Right before we turned into his school parking lot, he said, “Look, Mom, I’m really sorry. Can I have video games back today?”
“No way,” I told him. “You cannot act the way you acted this morning and think you can get your electronic privileges back that quickly.”
His face turned cold, and his eyes were full of calculated rage. “Then I’m going to kill myself,” he said. “I’m going to jump out of this car right now and kill myself.”
That was it. After the knife incident, I told him that if he ever said those words again, I would take him straight to the mental hospital, no ifs, ands, or buts. I did not respond, except to pull the car into the opposite lane, turning left instead of right.
“Where are you taking me?” he said, suddenly worried. “Where are we going?”
“You know where we are going,” I replied.
“No! You can’t do that to me! You’re sending me to hell! You’re sending me straight to hell!”
I pulled up in front of the hospital, frantically waiving for one of the clinicians who happened to be standing outside. “Call the police,” I said. “Hurry.”
Michael was in a full-blown fit by then, screaming and hitting. I hugged him close so he couldn’t escape from the car. He bit me several times and repeatedly jabbed his elbows into my rib cage. I’m still stronger than he is, but I won’t be for much longer.
The police came quickly and carried my son screaming and kicking into the bowels of the hospital. I started to shake, and tears filled my eyes as I filled out the paperwork—“Were there any difficulties with….at what age did your child….were there any problems with…has your child ever experienced…does your child have….”
At least we have health insurance now. I recently accepted a position with a local college, giving up my freelance career because when you have a kid like this, you need benefits. You’ll do anything for benefits. No individual insurance plan will cover this kind of thing.
For days, my son insisted that I was lying—that I made the whole thing up so that I could get rid of him. The first day, when I called to check up on him, he said, “I hate you. And I’m going to get my revenge as soon as I get out of here.”
By day three, he was my calm, sweet boy again, all apologies and promises to get better. I’ve heard those promises for years. I don’t believe them anymore.
On the intake form, under the question, “What are your expectations for treatment?” I wrote, “I need help.”
And I do. This problem is too big for me to handle on my own. Sometimes there are no good options. So you just pray for grace and trust that in hindsight, it will all make sense.
I am sharing this story because I am Adam Lanza’s mother. I am Dylan Klebold’s and Eric Harris’s mother. I am Jason Holmes’s mother. I am Jared Loughner’s mother. I am Seung-Hui Cho’s mother. And these boys—and their mothers—need help. In the wake of another horrific national tragedy, it’s easy to talk about guns. But it’s time to talk about mental illness.
According to Mother Jones, since 1982, 61 mass murders involving firearms have occurred throughout the country. Of these, 43 of the killers were white males, and only one was a woman. Mother Jones focused on whether the killers obtained their guns legally (most did). But this highly visible sign of mental illness should lead us to consider how many people in the U.S. live in fear, like I do.
When I asked my son’s social worker about my options, he said that the only thing I could do was to get Michael charged with a crime. “If he’s back in the system, they’ll create a paper trail,” he said. “That’s the only way you’re ever going to get anything done. No one will pay attention to you unless you’ve got charges.”
I don’t believe my son belongs in jail. The chaotic environment exacerbates Michael’s sensitivity to sensory stimuli and doesn’t deal with the underlying pathology. But it seems like the United States is using prison as the solution of choice for mentally ill people. According to Human Rights Watch, the number of mentally ill inmates in U.S. prisons quadrupled from 2000 to 2006, and it continues to rise—in fact, the rate of inmate mental illness is five times greater (56 percent) than in the non-incarcerated population. With state-run treatment centers and hospitals shuttered, prison is now the last resort for the mentally ill—Rikers Island, the LA County Jail, and Cook County Jail in Illinois housed the nation’s largest treatment centers in 2011.
No one wants to send a 13-year old genius who loves Harry Potter and his snuggle animal collection to jail. But our society, with its stigma on mental illness and its broken healthcare system, does not provide us with other options. Then another tortured soul shoots up a fast food restaurant. A mall. A kindergarten classroom. And we wring our hands and say, “Something must be done.”
I agree that something must be done. It’s time for a meaningful, nation-wide conversation about mental health. That’s the only way our nation can ever truly heal.
God help me. God help Michael. God help us all.
[Article of Interest] Why Some Schizophrenia Patients are Unresponsive to Antipsychotic Drugs
By Traci Pedersen
Patients with schizophrenia who fail to respond to antipsychotic medications may have something in common — they appear to have normal levels of the neurotransmitter dopamine.
Schizophrenia is typically associated with an overactive dopamine system, which means that the brain is processing abnormally high levels of dopamine. Traditional antipsychotic drugs attempt to normalize this process by blocking dopamine. However, about one-third of individuals with schizophrenia do not respond to this treatment, and until now, no study has focused on whether dopamine abnormality is present in patients resistant to antipsychotic treatment.
“Despite considerable scientific and therapeutic progress over the last 50 years, we still do not know why some patients with schizophrenia respond to treatment whilst others do not.
“Treatment resistance in such a disabling condition is one of the greatest clinical and therapeutic challenges to psychiatry, significantly affecting patients, their families and society in general,” said researchers from King’s College London’s Institute of Psychiatry.
“Our findings suggest that there may be a different molecular mechanism leading to schizophrenia in patients who do not respond to anti-psychotic medication. Identifying the precise molecular pathway particularly in these patients is of utmost importance and will help inform the development of much-needed novel treatments,” they added.
For the study, the researchers used PET scan imaging to investigate dopamine synthesis capacity in 12 patients with schizophrenia who did not respond to treatment, 12 who did, and 12 healthy controls. The results showed that schizophrenia patients whose illness was resistant to antipsychotic treatment have relatively normal levels of dopamine synthesis capacity. This would explain why the dopamine-blocking antipsychotic medication was not effective in this group.
However, researchers say that the findings need to be confirmed in larger samples before the study can affect clinical practice. They add that future research will have to center around patients who have never taken antipsychotics in order to see whether presynaptic dopamine regulation was normal in patients in the treatment-resistant group at the beginning of the disorder, before any exposure to antipsychotic drugs.