Thursday, March 21, 2019

Comments by Sa

Showing 372 of 372 comments.

  • Yes the open and fair discussions seem very important …..as well as skipping if necessary. For example many people have such terrible experiences in the hospital (forced treatment etc.) that that particular example could really be a trigger and not appropriate for discussing types of factors that may or may not have influenced recovery. (e.g. wouldn’t want people to blame themselves at all for the ‘terror’ or despair in such a setting if that were the case.

  • I am not sure I am understanding what you are saying here. My understanding is that Autism is currently defined as a psychiatric condition diagnosed by psychiatrists. I have always wondered about this and wondered why, if Autism was going to be put together with other conditions, (by our current health and education systems that love categories), why it wasn’t instead simply lumped together with other ‘learning differences’ or ‘learning issues’ categories (e.g. dyslexia etc. ) which are not considered psychiatric conditions.

    In terms of ‘rethinking psychiatry’, if Autistic people believe either that Autism shouldn’t be categorized as a psychiatric disorder, and/or believe that the current paradigm prevents healing or autonomy, this would seem clearly to be an issue for a website that ‘rethinks’ the current psychiatric paradigm, regardless of whether or not there are any underlying neurological ‘differences’ (or neurological ‘issues’ depending of how Autistic people look at it.)

    In a broader sense, my understanding of ‘rethinking psychiatry’ does not mean that there can’t be any combination of social, psychological, neurological or biological reasons for different distress, simply that the current paradigm implies causation where no evidence exist, and then ‘treats’ people without informed consent.

  • I am curious what worked in terms of helping you with your intermittent inability to speak.
    I had already been wondering about the following statements you made in your post and wondered if you were able or willing to explain these statements further in terms what you felt helped or harmed you:

    “It’s like a switch got flipped.” Those are the words my primary care provider uses to describe my experience of regression from Asperger’s syndrome to “low-functioning” or level three autism at age 38. In 2014, she’d watched in horror and perplexity as a long series of adverse reactions to pharmaceuticals and other medical treatments stole my ability to speak, read, and write, caused my sensitivity to sound to skyrocket, and decimated the few social skills I’d spent the previous decades mastering. ”

    When I read this passage originally I was thinking that you were describing what happened to you as a result of being given too many drugs, but now I am wondering if I am missing part of what you are saying. (No worries if you would rather not go into more details of your personal story:) )

  • A very frightening commonality is the issue of drugging “severely disabled” Autistic children. (I am not sure what the right way is to phrase that.) I was at a conference not very long ago where the presenter talked about how a particular psychiatrist ‘needed’ to prescribe anti-psychotic medication to ‘help’ an autistic child with ‘aggressive tendencies’. This presenter, realizing members of the audience might feel uncomfortable with this information, went on to assure the audience that this psychiatrist was a very good one who was very judicial about prescribing medications and would only do it if ‘absolutely necessary’. What struck me was how much I had liked the presenter and everything they had been saying up to that point. (They seemed to be such a respectful, compassionate and forward thinking person.) If I had not had any background in the area of these drugs, I would have believed the presenter that the drugs must be helpful, (for aggression….really???); just as the presenter seemed to believe it themselves. I guess I see this is an example of how trusting the general population is of psychiatric drugging; and is part of the reason why I think is is so important to work together with all communities who want to make changes in the area of drugging without informed consent, or other forms of forced treatment.

  • Thanks for this comment. This is very well said.

    (I think I phrased my above comment poorly when I was trying to make the point that people in extreme states often want to leave their extreme state behind, which is a very different situation than Autism.)

    I remember being surprised in the past when I found out that ‘Autism’ fell under the psychiatry realm rather then say the area or education and ‘learning differences”.

  • I feel sad that this comment section has become so adversarial as I feel I could learn so much from the differing opinions of the people involved.

    This comment from Au Valencia really struck me as something very important to mull over:

    “Every neurodiversity activist I know of recognizes that neurodivergent people face challenges, discrimination, and disability. We don’t assert that being neurodivergent is inherently good, just that it’s *not* inherently bad as psychiatry claims.”

    I see some similarities and differences related to this quote for those who experience extreme states or witness extreme states in their loved ones. The similarities I think have been hashed out here already, and have a lot of validity. The major difference I see, though, is that although some people talk about extreme states being ‘transformational’ while others see it more as devastating and painful; I haven’t heard anyone say that they wish they could have stayed in their extreme state forever, without being able to also participate in consensual reality. (Of course we know many people live happily ‘together’ with their voices or multiple selves, but I wouldn’t consider them to still be in a extreme state.) On the other hand, there are so many high profile autistic individuals who are accomplished, amazing people whose lens of the world seems to have things to offer that more ‘neuro-typical’ people cannot see. Autism does not seem to be a ‘state’ that people move in and out of like ‘extreme states’ (although I know some of the writers here talk about ‘regression’ so I am not talking about that or trying to argue anything about that one way or the other.)

    For myself I truly do not think we have the answer as to ‘how’ or ‘if’ the the biological and the psychological interplay for so many situations (aside from more obvious factors like brain injuries, substance use etc.) Although I think it is so vitally important and crucial not to ‘overstate’ causations that are not proven (so much damage has happened from ‘experts’ doing that), it doesnt’ mean that they are not things that we don’t know of yet.

    Anyway – I truly hope the experts in this field keep posting and commenting and teaching us about Autism. I have notices that there is often growing pains when new faces or groups join the discussion, and then after time everyone seems to understand people better.

  • “One of the core features of the autistic spectrum is supposed to be a lack of empathy, a lack that is thought to cause enduring difficulties in social interactions”

    I haven’t had time yet to read this article as thoroughly as I would like, nor to read many of the comments. However I just wanted to comment on this particular comment as this seems different from what I have been taught about Autism. I thought “difficulties in social interactions” were thought to arise from difficulty in social understanding (e.g. understanding social situations, social cues etc.) rather than from a lack of empathy …(???) It seems that this would look very different from things described as conduct disorders.

  • Hi samruck2,

    What I love about your comments is that you always seem to be speaking your truth as honestly and as candidly as you can.

    I don’t feel I have enough experience to make comments about Autism, but in terms of people experiencing extreme states, I feel that there is such a huge variation of presentations, suffering, impairment, loss, course of recovery (or not) that comments made by some people seem to me to trivialize or ‘miss the point’ when it comes to the experience of others.

    When I think of some of the impressions (stereotypes??) I have of people with Autism (e.g. truthfulness, high intelligence, ethical thinking, straightforwardness, lack of ‘game playing’ in social relationships etc), neuro-diversity seems to me to be a better descriptor for emphasizing all the positive traits that I wish more people had. (I could compare this to the ‘sensitivity’ and ‘high ethical beliefs’ that often seems characteristic of many people who are susceptible to going into extreme states, sensitivities that I wish were more widespread in our world ).

    However, it seems that some people who are described as, or identify with being Autistic, suffer or have difficulties functioning independently and autonomously in the world, and I would never want anyone to think I was trivializing their experience either.

    So I guess I will go back to reading and learning from the author, Sami Timimi and also from those who have critiqued these authors so eloquently; to try and develop a more nuanced understanding of all the issues brought up!

  • to ariarommie,

    I just wanted to make a comment about your reference to extreme states:

    I would argue that seeing what a debilitating and terrible experience extreme states can be for some people, is not an attitude that separates ‘mainstream’ from ‘non-mainstream’ points of view; but rather can arise from the different kinds of experiences that people have or witness.

    I believe what separates mainstream from non- mainstream points of view is more about how people in extreme states can be best supported.

  • Wow, Thank you! This is so amazingly helpful for people trying to sort out what factors might be involved.

    Sadly the current system with its coercive methods make it excruciating difficult to explore all the biological and environmental factors (e.g hormonal imbalances etc.) if you are avoiding becoming tangled up in the ‘system’. Any tips on how to explore these things outside the system (e.g. places to send hair analysis or whatever).

  • I am so sorry this happened to you, and so sorry for your family. I am glad you are still young and I thank you so much for persevering with your lawsuit. You could help untold numbers of people.

  • LOL!!!! I get your point about evidence -based treatment. I have to tell you though, I use that phrase quite purposefully because it is the phrase I see all the time quoted by mainstream psychiatry when they are refuting ‘alternative’ approaches They are always arguing that ‘alternative’ treatments are not ‘evidenced based’ , and then argue that their treatments ARE ‘evidenced-based’, so I always like to make the point that this is not so.

  • Hi Julie,
    Isn’t there still a common goal of ‘abolishing forced treatment’, even if people differ in their experience of therapy? I am not trying to minimize the harm that can happen when there is a power difference between service provider and client, but we could at least try to ensure that people were not forced to have treatment (including therapy) that they did not want.

  • Hi oldhead,

    I believe focusing on the lack of evidence -based research for treatment that is forced, IS the way to de-legitimize coercive psychiatry in the eyes of the general population. One does not even have to ‘prove’ that drugs are harmful, simply that the evidence is inconclusive, and therefore, even for that reason alone, people must have informed choice of treatment.

    Talking about the need for establishing respite houses, discussing issues surrounding ‘forced safety’, discussing issues surrounding the use of trusted advocates for those at the severe end of extreme states who are truly incapacitated, highlighting abuses that occur in coercive care; all of these discussions send the message that the seriousness, importance and difficulties of supporting people in extreme states, is well understood. These discussions prevent the establishment from ‘writing off’ arguments against forced treatment as solutions for the ‘worried well’.

    Although I an aware of the links between abuse and
    extreme states and the importance that the person in the extreme state has control in terms of their support network (such as in the Open Dialogue model) , I also know that there are families who would go to any measures to try and support their loved ones. It is my personal opinion that there is likely many, many families who truly believe that coercive psychiatry is the best way to help their loved one. (The ‘cognitive dissonance’ that may be helping them buy in so completely to mainstream psychiatry is the lack of other options to support their loved one in a safe manner.) If the lack of evidence -based research could get wider ‘legitimacy’, and if people had more viable options for helping their loved one keep safe, I think that families and loved ones could become a huge force both for supporting the changing of rules around forced treatment, and for developing solutions for respite, safe houses and other supportive environments.

    I believe the tide is already turning for ‘antidepressants’, in terms of the average person no longer necessarily believing that antidepressants are the answer for anxiety and depression. However, I believe the average person still believes that for many people in extreme states, the only way out of their extreme state, and their only hope for a productive life is through psychiatric drugs. I think focusing on changing this narrative (in the wider population) could have a huge impact on abolishing forced treatment.

  • HI again Robert,

    To be more clear, like others commenting here, I didn’t like that you used quotes from survivors (and not also from professionals and others who support ‘abolishing psychiatry’) to make your arguments. (Hopefully, you contacted the survivors ahead of time and asked if you could quote them.)

    My experience of many different discussion forums has been that survivors, as a group, are usually the ones held responsible for all negative comments and ‘anti-mental health’ views. This is despite the fact that there are many others, (professionals, support people, family members etc.), who take an ‘anti-psychiatry’ position, and despite the fact that are many survivors who support reform ideas. This often feels like a more subliminal form of scapegoating to me. If anyone deserves understanding, rather than criticism , for an anti-psychiatry position, then it is the people who have been badly hurt from the system. I believe that people who want to reform the system need to listen carefully to survivors and find the common ground where they can work together……For many this is the area of forced treatment.

  • Absolutely I believe that the focus should be on eliminating forced treatment, and that this is a realistic goal.

    I personally would like to see articles and initiatives that focused on the perspective of eliminating forced treatment (legal actions, establishing humane sanctuaries, exploring issues of ‘forced safety’ for those in extreme distress etc.).

    Without meaning to sound disrespectful to you Robert, (and acknowledging that I think you do so much that is positive, practical work such as your work with the education series and other work you have talked about in other articles); this particular piece seems to me to be unnecessary and unhelpful, and I can see why some see it as disrespectful to survivors.

  • Thank you Missy and Skyler for this window into your world.

    I saw you wrote this in your bio:
    “Their goal is to become activists for the multiple and queer communities and advocate for greater autonomy and freedom from forced psychiatric treatment.”

    I truly believe that if many of those who are in extreme distress, had had more access to stories such as yours (people overcoming psychiatric prejudice and leading interesting, meaningful lives within a system); then their “symptoms” of distress would not have been so terrifying to them when they experienced them. I believe that it is terror which can precipitate a downward spiral whether the terror comes from within or without.

    I wish you all the best in your activism.

  • Thanks again for another ‘window’ into your world.

    I am a little perplexed about when you say this:
    ” If you’re crazy and violent, it’s not because you’re crazy. It’s because you’re a violent asshole anyway, regardless of any mental issues involved.”

    I don’t think this is always true. I believe that even gentle people can do things quite out of character in an extreme state (from fear or confusion or something like that I guess). This is what is so heartrending.

  • Hey Frank,
    I am not quite sure what you mean …..isn’t highlighting 3 and 12 making force the issue? (I totally agree there will be law enforcement and quarters of the mental health movement working in the opposite direction as they already are…but I would like to see critical psychiatrists, psychologists, mental health workers, S0s, law makers and enforcers channel their energies mostly towards these issues because it would then allow more movement as a whole)…What am I missing?

  • Thanks Robert,

    I think this is a useful way of organizing information as an effort to promote practical actions for change.

    I personally believe that focusing on 3. (“Every person who comes in for service is provided with full informed consent about psychiatric medications”…I would add…and about all types of treatment ), and 12. (“Every crisis system will be reorganized to reduce reliance on involuntary treatment and eliminate forced medication”), is what will produce the biggest impetus for change.

    Once inaccurate information stops leading people astray, and coercion can no longer force people to follow particular pathways, survivors, services users and SOs will be doing all they can to seek out the type of services that are effective, and this will put more and more pressure on service delivery modals to change.

  • Your story leaves me speechless. I believe it could help so many people if they get the chance to read it. I can relate to being haunted by guilt by decisions made. In retrospect, the right thing to do often seemed so much different to me than what it seemed at the time.

  • Hi Eve,
    I just thought of something. You may well be familiar with the blog ‘oneboringoldman’ that was written by the late psychiatrist Dr. Mickey Nardo. Although Dr. Nardo died earlier this year, his blog is still up and his daughter plans to do something with all the entries such as write a book, with the help of another psychiatrist, Dr. Carroll, who was a regular commenter on the blog. Dr. Nardo’s daughter Abby, at one time posted that she would be happy to consider ‘guest posts’ to go up on the site if people had some things they wanted to post about.

    I just wondered if you might want to ask her if you could post your contribution on the blog as a guest post – I think there you would be able to reach an audience of very critical and forward thinking psychiatrists. I know that there was a lot of discussion on the blog about the worry people had about the direction of psychiatric care: probably the same kind of worry and distress you had about the changes particularly over the last few years of your practice that caused you to see more patients and prescribe more etc. (I don’t really know all the details as not being a psychiatrist myself I tended to skip over those discussion pieces.)

  • I wish you well in your journey.

    You say: “Since then, I have been learning a lot about what ails us all, and what keeps us from getting help. I have been able to speak more openly about where I am, and what I believe. And, I have decided that I need to provide help and support as a coach to my colleagues who may be experiencing similar difficulties and have nowhere to go with them. Our distress is literally killing us.”

    I believe that the distress you and like minded colleagues are experiencing will be best alleviated if you can find a way to make real change for clients, so by the end of the day, you can feel that you have helped as many people as you feel you have harmed.

    There are so many ways to do this: We need a powerful group of insiders to stand up and fight against the current practices of forced treatment. As you no longer believe in the validity of psychiatric treatment, you can see the urgency of this action. If you feel upset about receiving money for over 35 years, for treatment that caused illness or death to clients, you could donate a portion of that money or your time to provide a foundation to help clients in different ways. I personally believe that the best help you could provide to colleagues that feel the same way as you do, is to provide practical ways of working together that will improve the picture for those harmed by the system.

    I truly do wish you well and welcome you to MIA – it is not easy at all to ‘face the piper’ as I am sure you must realize by some of the critical comments you have received here, not to mention what you must be experiencing at the hands of your colleagues etc – I am sure this was not what you were thinking you were signing up for when you first entered medical school.

  • Break through in communication!!! I am so very, very thrilled about what happened in our world today and I wanted to let you know as it happened after I used some of the ideas your wife taught you to use to help her with some of her difficulties (the idea of counter balance that you described in the comment you made to Julie about eating issues on The mad pride perspective …..article). Please also thank your wife for me and thank her for allowing you to describe your journey together in the hopes it might help others – it has very certainly helped us!!

    I wanted to post this on “A Mad Pride Perspective on Borderline Personality Disorder” where the discussion was, but the comments there have been turned off so this was the other place where I thought I could find you’anonymously (as I am hoping you still have the notify me button on)

    Noel I hope it is okay that I comment about this here. It is not completely off topic, as our break through in communication was helped along by this article, as well as by the first hand comments of violenttransempire’s comments in the Mad Pride article thread. (as well as more generally by all the info I have collected over the years from this site).

    Although I won’t go into too much detail (much as I am dying to do!!), this article of yours first confirmed what I had been feeling, that extreme states and dissociation really couldn’t be divided into distinct different entitites…particularly not by the foolish ‘symptom descriptive’ method of the DSM. So although I had already spoken a lot to my loved one about the heros and heroines of the extreme state world (Eleonar Longdon, Katherine Penney etc) and provided them with lots of opportunities to see videos like Stuart and his voices, I started to realize that their ‘framework’ might be different, and although I may have been helping them feel less afraid in terms of voice hearing, that wouldn’t completely help if they had feelings of being multiples (I do not know the right terms to use so please forgive any wrong use of vocabulary). Then reading yesterday the comments made by violenttransempire, I realized that the rare times that my loved one spoke they also used ‘we’. [I used to think that it was because they were including us in their comments (e.g. Can WE go there)], but now started wondering if it could have something to do with being multiple. For years my loved one has been what some have described as catatonic (not only rarely talking or communicating, but also not ‘doing’ anything either). Well yesterday I ‘wondered’ with them about the framework of multiples, and described how I had been reading comments from someone who felt that way (violenttransempire), and who was very articulate, and who seemed very interesting and fair-minded etc. etc. (I always think role models can be so important to reduce fear). Later in the day when they felt unable to do a simple daily living thing, I asked them if there was ‘anyone there’ who could do the thing I was asking them to do, and what happened after that was truly transformational!! Without going into detail, there was first a nod in agreement (that there was someone there who could do it ) and then a whole scenario and ‘conversation’ followed ( mostly non verbal with the occasional written and verbal word included), After this, more daily tasks were completed in the same way.

    I have no idea what tomorrow will look like, or how long and complicated a journey we are on. But what happened yesterday denied my worst fears that severe cognitive damage could be underlying the catatonia. (as is often said in the mainstream literature) Yesterday I saw a whole active mind and world at play.

    Samruck2, I hope that you do write articles for MIA one day. I feel you and your wife have so much to offer to the world and I don’t see why it should matter if she decides she would rather work in the background, guiding your contributions. In the meantime I suddenly realized that we could communicate anonymously by opening a forum to discuss these issues further. (Not that I am suggesting SO contributions should always be sidelined to ONLY comments and forums:)) ) Although I thought the name of the group ‘anti NAMI’ pretty funny when Julia suggested it, I personally would prefer a forum name that was more inclusive of all the groups who comment here. I feel that our breakthrough came as a result of all the groups (survivors, SOs and professionals,) discussing these issues together.

    **just as a footnote…I think an exciting topic (at least to me although it made be common knowledge to those in the did world) would be the parallels to the “hearing voices movement’. ‘Multiples’ in themselves are not necessarily problematic in the same way that ‘hearing voices’ is not problematic in itself. It seems multiples can be an expression of trauma and it is thus the trauma that needs to be addressed (as I know you know). Likewise trauma can result from the fear of being multiple (just like those who hear voices can be traumatized by peoples reaction to them hearing voices, the media presentation of symptoms etc, etc.)

    Happy Holidays everyone…I cannot remember the last time I felt so happy!!!

  • Yes I can see what you mean about how confusing my comment was as I used ‘post’ to refer sometimes to posting articles and later when I was talking about posting comments:((

    So what I meant to say:
    “I am confused about this thread. It seems to be saying that SOs can’t post ARTICLES on MIA and that they shouldn’t be able to post ARTICLES….”

    and then “I know that there are at least some ARTICLES from SOs on MIA, and I would be very disappointed if it really was the policy that SOs are not allowed to post ARTICLES about their experiences…..”

    and then later I used ‘post’ when I was referring to comments:
    : “Like the SOs who have posted COMMENTS here, I also believe that SOs. not following the mainstream psychiatric path, provide invaluable information and ideas that are rarely heard.”

  • I am confused about this thread. It seems to be saying that SOs can’t post on MIA and that they shouldn’t have posts. Robert Whitaker wrote in one comment section this:

    “MIA’s mission is simple: We believe the current paradigm of care is harmful (and based on a “narrative of science” that is belied by the science,) and needs to be rethought. We believe that this “rethinking” should involve people with different experiences and different ideas: people with lived experience, professionals, family members, philosophers, social workers and so forth. It really is meant to be a forum for expressing diverse opinions, with the only unifying thought that the current paradigm needs to be rethought.”

    I know that there are at least some posts from SOs on MIA, and I would be very disappointed if it really was the policy that SOs are not allowed to post about their experiences.

    *I would so appreciate if the MIA staff would clarify what the policy actually is on this thread.*

    Like the SOs who have posted here, I also believe that SOs. not following the mainstream psychiatric path, provide invaluable information and ideas that are rarely heard. They can provide information about how a ‘new paradigm’ could actually work in a very real and practical way; particularly in places where there are no alternative humane and respectful ‘sanctuaries’, and particularly for those not yet able to live on their own, and for those who do yet speak up for themselves. Samruck2 and Julia’s comments show how the ‘current paradigm’ can leave loving spouses in situations where they must either take on a 24/7 support role, or risk having their loved one be subjected to truly damaging support.

    SOs can provide a strong counter narrative to the idea that severely suffering people need to be institutionalized, or forced drugged in order to follow a recovery path. They can give real information about what progress looks like, which could provide an enormous amount of hope for people, and open the door for more and more SOs to act as allies.

    I really like how violenttransempire summarizes the following: “In our opinion, SOs should be allowed to contribute……as long as they understand the limits of their knowledge and accept that it does not equal that of a person or people who experience neurodivergence first-hand.” I would add to this statement, that when ‘second -hand’ information is all that is available (e.g. as is for some people who are severely suffering), the 24/7 second-hand knowledge of SOs, gives what seems to me to be much deeper information that professionals just don’t have.

    Of course there will be things that SOs get wrong. That is why it is so important to have debate in the comment section from survivors and others. The discussions in the comment sections are, I think, how we all come to a deeper understanding of the issues on this website. ( I know, for example, that I have found this particular thread very illuminating in its discussion about burden, loss and love)

  • oops …the comment above showed up in the wrong place….I wanted it up under my other comment near to where you responded….I know you write anonymously about your wife …all I meant is that if SOs connected directly with you , then THEY would no longer be writing anonymously and that might be why it is hard for you to get people to work together. Sorry if my original comment sent things on a tangent :)))

  • Hi Samruck2 – I didn’t read through this whole thread – I am just responding to your comment to me at the beginning of this thread because I think there may have been a misunderstanding about what I said. I meant that many SOs might not feel comfortable working together with other SOs online, or with sharing any information (except in a completely anonymous way) because their loved one is not able or willing to give informed consent for the sharing. (I wasnt talking about any decisions that MIA might or might not make in this regard). By the by I thought MIA did include articles from SOs ( I am thinking of Eleme Hassamar’s very moving story about her daughter).

  • I read this comment in the Mental Elf written by Paul Morrison and he seems to be describing a similar condition as you have described in the quote I listed above. He writes “….The inexperienced sometimes label it as autism, and yes, it can be hard to define. That’s because it involves a loss – a loss of the former personality. The loss encompasses; motivation, ambition, emotion, conversation, interests, family-life, friendships, romantic relationships and intellectual-life. In terms of brain science, it is an impoverished ability to embody (select and initiate) psychomotor and emotional programmes. Lived out in back bedrooms, easy for services to ignore. No voice. No complaints. No risk. No narrative. Usually no striking life event or trauma, certainly not always, although sometimes a catastrophic decline in high school or college.”

    In terms of chances for recovery Paur Morrison goes on to write: “Here, talking is painfully difficult; expect long silences. Unless one is an RD Laing type, therapy can’t even get off the ground. Of course we all try and keep trying. And the dopamine blockers don’t really work that well here either. Only one therapy has a chance to bring the personality back, clozapine. And when it works, it is astonishing – a penicillin-like effect. It doesn’t block dopamine, to any great extent. Indeed, nobody knows how it works – which is a bit embarrassing for the field. But the parents are so thankful to see the spark return, they don’t care how it works. And at last, my psychology pals can do their thing, and gently guide the person back to their former self”

    ***I am really wondering about your take on all of this. Any thoughts or ideas (or a future blog if it is beyond the scope of this blog) would be so very appreciated. ***

    [One thing that strikes me is that psychiatrists like Paul Morrison may only ever see how medicated people progress. Would Catherine Penney’s previous condition be considered similar to this? Are there other case studies from the pre -med past that gives information about how these people progress if they haven’t been medicated? If some people are ‘brought back’ by clozapine, is that also evidence that their cognition is all ‘in there’. Are there stories of people coming back from these states after years (with or without medication). Also do you see other types of ‘cognitive shut downs’ (for want of a better term) such as seen in PTSD , severe dissociation or trauma, as having similar presentations, or as being very different to what some people refer to as ‘negative schizophrenia’ (Here I am thinking of the points made in Noel Hunter’s article on this site entitled something like “Trauma or psychosis..the Ultimate Political battle) ……..I have so many questions…..]

    (By the way I am not trying to offend anyone here by language used in the quotes or mentions of medication and blocking dopamine etc…just wanting to find out more information of a very specific type of presentation that seems different than a lot of peoples’ experiences. )

  • “There are situations, however, such as very severe depression or what is sometimes referred to as ‘negative-state’ schizophrenia, where there appears to be a loss of intellectual and creative capacity. It is possible that some of these situations are associated with underlying brain dysfunction or damage….. In people diagnosed with schizophrenia with severe negative symptoms, often there are some inklings of creative thought that provide evidence that mental abilities remain intact. ”

    Are you able to speak in more detail about this either here or in future articles? Do you believe that in these cases of severe depression or severe negative symptoms that there is likely also brain dysfunction or damage, and more importantly, do you think that it is usually or sometimes something that is irreversible?

  • “How results show that exercise can reduce symptoms in young people such as the cognitive deficit, lack of motivation and social withdrawal and that these are symptoms that the medications don’t really help with.”

    …this is such a HUGE statement… and something that we feel in our gut to be the crucial element to helping our loved one. There is much argument out there about the cognitive deficits of the severely ill: it is what makes a lot of people who believe in more mainstream approaches to psychosis, question the ‘severity’ of distress of the ‘articulate’ survivors who post here. However, their reasoning is pretty circular as, as mentioned in this article, the medications do not help the cognitive deficits anyways. There certainly needs to be a lot more attention paid to this important point.

  • Hi Noel,

    I also believe the first -person perspective is quite rarely heard or valued in its own right. We have found this in our never -ending search for first person accounts to aid us in our understanding. And to clarify, the comments that I added about the importance of SO insights, were not meant to imply that it should be YOU who collects data from SO’s as well.:))

    And also I have not found, as you say, that “the perspective of the family member, more generally, actually is quite celebrated and heard often”; at least not for the SOs (of people described to be in ‘extreme states’) who reject the narrow narrative of mainstream psychiatry. My experience has been that there are very few places (MIA is one of the few exceptions) that welcomes those voices. (If you know of some good researchers who have studied this type of SO experience, – I would so appreciate getting their names!!!!)

  • Sadly the time elapse in the midst of me editing my comment above…so I guess I will do a ‘redo’ here in the interest of clarity.
    Emily, if possible, please delete my first response.
    So again with edits:

    …and in particular we can provide information about the time periods when our loved ones are suffering so severely that they are not communicating to others (e.g. through discussions or writings) about what is happening for them, at least not at the time it is happening to them. (Retrospectively, they may or may not feel they remember all that was going on during these times.) So the input of S0s who do not see nor accept the narrow narrative often provided by ‘ mainstream’ psychiatry, could provide a valuable counter balance to the observations made about people on hospital wards etc. who are all following very similar (often forced) treatment paths.

    I don’t know , for example, what we would have done if we had not come across Dante’s Inferno, which told Katherine Penney’s story from the perspective of her psychiatrist, Daniel Dorman. We also, of course, listened very carefully to Katherine Penney’s first hand account and learned so much from that about how our loved one might be feeling inside. However, Dr. Dorman’s book also helped us by showing what Katherine’s distress ‘looked like’ to others, showed us what her ‘progression’ looked like from the outside. This allowed us to recognize patterns of similarity, and gave us hope and insight about how to support, and what to expect. I believe Katherine Penney found his book very validating about her experience.

  • …and in particular we can provide information about the time periods when our loved ones are suffering so severely that there is no way they are communicating to others (e.g. through discussions or writings) about what is happening for them. So without the input of S0s who do not see nor accept the narrow narrative provided by ‘ biological psychiatry’ , a lot of information that is provided about people during these time periods are the observations of people within the mainstream system (observing people who are contained in hospitals wards etc.) I don’t know , for example, what we would have done if we had not come across Dante’s Inferno, which told Katherine Penney’s story from the perspective of her psychiatrist, Daniel Dorman. We also, of course. listened very carefully to Katherine Penney’s first hand account and learned so much from that about how our loved one MIGHT be feeling inside, but Dr. Dorman’s book also helped us in a different way showing what Katherine’s distress ‘looked like’ to others which allowed us to recognize patterns of similarity, and which gave us hope and insight about how to support.

  • Thank you Samruck2!! I always read your comments very carefully both because I think you really articulate well the ‘intense pain’ felt by those whose loved ones are suffering, and also because I see so much overlap and similarities between what people call extreme states and what people call ‘DID’ (Noel Hunter’s article on this subject, “Trauma and Scizophrenia …The Ultimate Political Battle” particularly resonates with me). Thank you for the offer of emailing directly …I will most likely take you up on that!

  • Thank you Eric for taking the time to write me such a thoughtful response – I think I know what you mean by how ‘opening yourself up and letting it happen’ is a helpful way to work through the chaos – the therapist I have worked with talks about just ‘being with’ the person, rather than trying to ‘do’ something. Interestingly after I wrote my comment I did have an interaction with my loved one where there was a little talking (still the connections were difficult for me to understand) but what was different was that my presence was more obviously comforting than what I have noticed it to be in the past, and there were a couple of times when I could distinguish when comments were actually directed at me rather than the voices, or the characters or beings or whatever my loved one feels they are relating to (I am still waiting to see how my loved one describes what they experience. (I don’t know if it feels to them like they are hearing voices, or if they feel they are divided into more than one person, or beings etc.)

  • Thank you Eric. Reading this post gets me very determined anew to try to understand the alternative reality of my loved one. The problem is the bridge from my reality to theirs is broken -so far it is so incredibly difficult to have any form of verbal communication which would allow me to form any kind of understanding. Your alternative reality does not seem to include a shut down of your ability to function (to talk, to write, daily functioning etc.)…or does it at times? Rather than being impaired in your ability to understand and function in consensus reality ….you seem to see through it and beyond. I keep trying…mostly through nonverbal communications….but I wonder what might else might help……

  • I was just thinking how much Matt would have likely appreciated all the discussions and debates that have resulted from this post and the other posts written in honor of his memory. I hope that the ‘celebration of his life’ service yesterday provided lots of comfort and meaning to his loved ones. Rest in peace, Matt, you gave so much positive energy to this world.

  • Such devastating news. I only knew Matt from when he first commented profusely on MIA , and then later when he started blogging using his real name.

    His blogs and his comments helped me enormously as I struggled to understand and support my loved one. I felt in awe of how he had overcome so much adversity, and how he was able to weave his own experiences, thoughts and research into such thought provoking comments. I also felt so grateful that there was people out there like Matt that my loved one might one day see as their peer or role model.

    What an amazing, intelligent and compassionate man. This is such a loss to our community. My sincere condolences to his loved ones.

  • Such devastating, devastating news. I only knew Matt from when he first commented profusely on MIA , and then later when he started blogging using his real name.

    His blogs and his comments helped me enormously as I struggled to understand and support my loved one. I felt in awe of how he had overcome so much adversity, and felt so grateful that my loved one would one day see that her peers included people like Matt. What an amazing, intelligent and compassionate man: This is such a loss to our community.
    If anyone knows how I could pass on condolences to his family please let me know.

  • Dr. Breggin,

    Thank you so much for telling Michelle’s story.

    I hope that one day Michelle will be able to use these articles as a way to help herself find peace, and to find the strength necessary to believe in herself, rather than to believe the public’ s perception of herself. I think many people who have had exposure to the psychiatric system feel their intentions and actions are grossly manipulated to the extent they lose faith in themselves and who they are. It seems the legal system -with its emphasis on winning arguments rather than searching for the truth – can do the same thing to people.

  • so what about those who no longer seem to be able to access their ‘human’ consciousness and seem lost in an altered or ‘psychotic’ state. Is God as cruel as that? I am always so surprised when people talk about “severe mental illness’ and yet seem to be able to read and write and have conversations etc. You say you were very psychotic a couple of years ago but look at the articles you wrote at that time. I am not trying to be argumentative – just desperately trying to understand and learn how to reach and support someone in this state.

  • Thank you so much for this article.

    It reminds me so much of how Robert Whitaker writes -clearly presenting the arguments of the opposition, and then logically and fairly addressing each point. I wish Torrey would respond to your piece even if he does it on his own site. (I do not expect that that will actually happen but one can hope!)

    I am so glad you are back writing for MIA.

  • I think I get what you are saying, but I feel that most people out there in the world who are now calling Trump ‘crazy’ are not thinking that everyone is crazy in either a positive or negative way. They are pushing Trump into the more typical description of ‘crazy’, into the world of people who have been given psychiatric diagnoses. Thus all this talk about Trump being crazy is resulting in even more discrimination.

    The person I know who suffers from extreme distress is truly suffering on a daily basis, and I believe does so because of being so sensitive to the injustices and cruelty of the world, because they no longer believe that they can be safe in the world. This person is so far from being ‘morally ill’ that it is upsetting to me to see them being described with the same blanket term of ‘crazy’ that is being used to describe Trump. Whatever ‘morally ill or morally distressed’ might mean…it needs to be treated separately from a blanket ‘crazy’ term. Otherwise the stereotype that mad people are dangerous, violent, unfit for jobs etc. will continue to escalate.

    Don’t get me wrong, I love your articles and admire and appreciate all you have done for the mad movement…I just think the common occurrence that seems to be happening now – of people (who are not so enlightened as you), – calling Trump crazy….I think this phenomenon is really perpetuating stereotypes. (Also I know this article was about so much more than the Trump issue…and I really believe that speaking up about environmental issues is definitely crucial to any human rights cause)

  • Sera,

    I can’t begin to tell you how much I appreciate this article. Calling Trump ‘crazy’ is so completely discriminatory against people who have experienced madness or identify with madness. Calling Trump mad and therefore unfit for office sends the message that people with psychiatric diagnoses are not fit for positions of trust or authority. When I think about my family member and how sensitive they were to the injustices, cruelty etc. that exists in the world, it breaks my heart that anyone would describe Trump in any way that was similar to how they have been described.

  • I think the 4 components is a very good way to look at things.

    – To Samruck2, I agree that there is a a lot of untapped resources from family members and SOs. I think SOs have been made very frightened by the ‘narrative’ and what might happen to their loved one if they don’t listen to the professionals.
    I also think that because it is so hard and sometimes impossible to support a loved one at home given the lack of community support and the coercive nature of treatment – (I just finished reading the latest ‘Abduction’ story which tells the all too common story of how reaching for support can turn into terror) – cognitive dissonance kicks in and then family members and SOs feel the need to believe that the system is working and is the best route to go with their loved one.

    I guess though I heartily agree that so much more support for the MIA movement could come from a larger representation of caring SOs, I don’t think that the main reason why they are not here is because survivors are making people feeling unwelcome. I have never yet felt unwelcome here when I post as a family member. When I have asked questions about our situation I have found many survivors have been extremely helpful and have chimed in to offer advice based on their own experiences. (I also have read so many of your comments and found them very helpful in that they acknowledge how difficult it is to try and provide 24/7 support at home. My impression has been that your comments have been very well received by the community although of course I have only see bits and pieces of conversations.) Perhaps I am misinterpreting that you are blaming survivors for others feeling unwelcome, but I have noticed a theme lately on MIA that survivor responses are being cited as the main reason why MIA isn’t growing as quickly as it should (e.g. as the reason why some professionals don’t want to post here) and I do sometime feel that the few extremely negative comments made by a few people (and not necessarily survivors) overshadow the many supportive, or justly critical comments, and many thoughtful conversations that occur here on MIA.

  • Madmom Thanks for clarifying…I couldn’t agree with you more about that.

    I guess I am very sensitive about how having to ‘stay under the radar’ interferes with a healing environment and often prevents people and families from moving forward….another lovely gift from the current coercive system of ‘care’.

  • Thank you for this very important article. I could not agree more.

    To me it is the power accorded to professionals, in this case psychiatrists and psychologists, which make things so dangerous in our society: the power to treat without informed consent, the power to assert theories of ‘causation’ of mental illness as if their theoretical constructs were fact, even the power to ‘control’ use of drugs through prescriptions when so little is actual known about the real effects of psychiatric drugs in the aggregate. What is so scary to me is that I have heard good, nonconformist type people talking about how it would be good for psychologists to be able to diagnose Trump as it could control who became a political figure…..imagine a world where you would need to pass a psychiatric test to go into politics!!!!!! Then they would really have us even more than now.

  • By the way I forgot to say thank you so much for your story – I found it very helpful and informative.

    My questions to you about dosages are not just a response to your story –
    I have done so much reading and thinking about different ideas and approaches and like to hear some of the specifics. What kinds of things does your doctor check for? (e.g. blood tests or hair analysis to see if their are deficiencies?) …or rather does he/she monitor reactions and responses. What kinds of things has your doctor helped you avoid etc…..

  • samruck2,
    What you have written is so informative for anyone trying to support someone going through extreme distress. When one receives, as you call it, the ‘un-earned stuff’ in great intensity, it can be so easy to slip into thinking that all negative responses are un-earned, and thus start to provide the type of patronizing help that mirrors the type of help one often finds in the ‘system’. It can be so difficult to tease out the unhealthy patterns in one’s own relationship ( that may have existed prior to the distress, or that may have developed as a result of the distress); from the unearned stuff for which one is simple acting as a safe and trusted sounding board.

  • Hi uprising ,
    I just wanted to say that I think I really hear your point about how turning the comments off limits the abilities of readers to discuss the issues brought up by a blog, and to challenge the ‘opinions, ideologies and world views’ of bloggers. I know for me, my thinking about all these issues has certainly changed as a result of all the comments I have read over the years. However, what I am hearing from the MIA people is that they do not know how to deal with the negative ad hominem responses that also appear in the comment section and that sometimes attack the blogger’s character. It sounds like moderating these type of comments is not working both in terms of the expense, and because of how it is so difficult to draw the ‘right’ line. So I think it is not just that some bloggers don’t want to engage with comments, (like you say there is no requirement to respond), but they also don’t want to hear comments that are slurs to their character etc. Thus having comments might make some people unwilling to blog at all. ( …..My apologies if I am stating the obvious:))

  • one other thought….maybe bloggers would be more willing to engage with comments if there was a option to turn off the comments after a certain time period…(a week or so) …so they wouldn’t feel that they would have to keep explaining themselves over and over….this could be done by just adding the line of ‘the comment section is closed’ or the ‘comment section is closed at this time’ at the end of the article or after comments depending on whether it was always closed or closed after a time period.

  • I have been thinking about the issue of ‘turning off the comment button’ and just thought of a suggestion that again comes from the ‘oneboringoldman’ site, and Dr. Nardo’s solutions to dealing with very contentious comments. Prior to his comment section Dr. Nardo had a long paragraph explaining how things discussed were often very emotional for people (including himself) and then described the type of comments he would moderate, and when /why he would close down comment threads. One could see that paragraph and read it every time you were about to comment. (I can’t ‘see’ it now so it must have come up after you logged in or they have removed it now). I wonder if MIA could have a paragraph that is included at the end of each blog expressing MIA’s position. Something that would include the ideas that MIA was a site for all ‘voices’, and what MIA values and prefers is open discussion, and comments from all the community, but that MIA understands that conversations get contentious and very emotional for people and for the reason of wanting to hear from a diverse group of bloggers, allows the bloggers a choice of posting a blog without a comment thread. It could also include the suggestion that if a reader wanted to discuss any of the concepts raised in a blog, they were invited to start a conversation in the forum section. (Of course this paragraph would be worded much better than how I have worded it here.) This type of paragraph would ‘remind’ readers that even though MIA may value aspects of all blogs posted, MIA is not implicitly implying that they agree with everything said in the blog, and that there are very many different opinions about these sensitive issues. Another thing I thought about is that being able to turn off the comment button could be very important to some people with lived experience, and I think anything that MIA can do to make people with lived experience feel comfortable and safe on this site is very commendable. It makes me think of all the wonderful contributions that Monica Cassani (spelling?) has made with her website and posts, and I believe she does not (always? sometimes?) have a place for people to comment on her website.

  • HI Brett,

    I want to thank you for your latest response here and also for the work you have done over the years to promote MIA’s mission. I am glad that you described all that you have done over the years in your previous post, I found it very helpful to know about your contributions. It will make me sad if after this comment thread you won’t feel comfortable to post here. I hope you will reconsider.

    In my previous comment I expressed my deep concern about creating a MIA site for professionals and this continues to be something very, very important to me. I think my worry over this suggestion overrode everything else that people were discussing. I personally feel okay about people posting and choosing to turn the comment button off. (Although I would prefer to hear the blogs with comments, I would rather read the blogs with no comments than not have the blogs at all.)

    My deep concern over a ‘professional only’ site mirrors something that has recently happened in my community which may in part be why I found your comment so difficult to read. Although for privacy reasons I won’t go into too much detail, my 24/7 experience supporting a loved one in extreme distress for years , did not ‘qualify’ me to work with people trying to promote change in the system. Although this in itself might have been understandable, (perhaps there were things about me personally that did not seem conducive to the group’s mission); however, at the same time, a ‘professional’ whom we recently hired and who was not known to the group (and who had no other experience or training in the area of extreme distress then what we provided), WAS considered to be an appropriate candidate. (If this professional had joined, they would have had to draw from our family’s situation as their contribution to the group!)

    I believe this kind of devaluing of experience happens very frequently to both people with lived experience and their families even from the most well meaning, thoughtful people. I believe it is very common to have professionals ‘speak for’ people with lived experience and their families and I think MIA is one place where that does not happen. I think division into ‘groups’ of professional from non professional people in the area of human distress is very, very problematic and can lead to all sorts of wrong directions as has happened so frequently in the past. “Nothing about us, without us” seems to me to be a very important motto for people to keep in the back of their minds when they strive to support those who suffer in this way.

  • I just wanted to say that the suggestion to have a “MIA” site for professionals is a suggestion that feels extremely worrisome to me.

    When I glance over the comment section (I did not read it thoroughly) I see both supportive and non-supportive comments coming from both professionals as well as from people with lived experienced. This has also been my experience with other comment sections, and indeed posts. (Posts from professionals who disagree strongly with current mainstream practices often make comments that make other professionals want to distance themselves from MIA). So I wonder and worry deeply why removing the non professional or ‘personal experience’ voice would seem to some professionals to be a solution to this issue.

    I want to add in two comments from professionals I respect deeply that seem to have different solutions then from what Brett Deacon seems to be suggesting about having a `professional only`place on MIA. One is from the late Dr Mickey Nardo who often expressed his irritation with the things that some PROFESSIONALS posting on the MIA site were saying. I once got what I thought was an irritated response from him when I was bringing up how important I think it is for mental health professionals to stand up for ‘informed consent’ for treatment, even if they are not personally involved with any ‘lack of consent’ issues in their own practices. In an email exchange he let me know that he wasn’t annoyed with me and that he seldom got annoyed with service users, his irritation was with some of the anti-psychiatry broad sweeping statements that some professionals express. So although I believe he did distance himself from MIA, my impression was that is was not because of service users, but rather because of how some of the professionals posted here. On his blog both professionals and non-professionals alike were welcome, although he certainly moderated comments that he felt were attacking etc., and closed down the comment section when tempers began to flare in the comment section.

    The second professional is indeed Sandra Steingard, and I agree so much with what Richard has expressed about how Sandra deals with comments in such an amazing way. I myself made many very emotional (hopefully not rude) comments to her (again over the issue of informed consent), and I appreciated so much how she was willing to engage with me over those comments. I once asked if the reason she was able to handle anger expressed in many of the comments was because she could see the `pain behind the anger` and she agreed with that. I find her to be a very compassionate person who understands the deep suffering of those who consider themselves `survivors`.

  • “what if we took individuals who are experiencing emotional crises…..and offered them safe spaces of respite? What if, the therapist was more of a guide and support, allowing the person to go through their experience and helping them to make meaning of it in the process? What if interventions….. focused on ensuring that the person feels safe, supported, heard, and understood? What if people who had gone through the experience themselves were to teach others……….What if???”

    My answer: If only!!! This is what we have tried to do to support our loved one….and we always think ‘If only, if only, if only’ our society and systems were set up to support this type of approach.

  • I am at a point of our journey where I am stepping away from commenting for various reasons, although still eagerly reading all these blogs and comments.

    I did, however, want to make a brief comment here about how grateful I am, Sandra, that you are willing to bring up and discuss involuntary care.

    Our own experience, is that involuntary care (both ‘lack of informed consent’ as well as situations of ‘force when there was ‘no consent’); completely changed things so that we ended up on a much more severe path.

    The worry and threat of possible involuntary care kept us living in a state of hyper – vigilance. and made it unbelievably MORE difficult to access services and to provide the healing environment we needed to provide to promote recovery.

  • Thank you for your informative and respectful response here; in spite of having some critical reactions to your post.

    I have not heard of ‘avatar therapy’ and wonder if more about that will be posted on MIA.

    I really like your final comment about the importance of being able to change our minds in the face of new information, and I echo Sandra Steingard’s point that Whitaker should have been treated with great respect for being able to discover and bring such important new information to light; rather than be vilified, as he has, by so many psychiatrists.

  • Shook

    This is my response to your response way above. The burden of proof of whether a treatment WORKS should fall on the doctors who force treatment. (We shouldn’t have to ‘prove’ it doesn’t work in order to not be forced medicated. ) Doctors should not be able to force treatment on people if it MIGHT make the recovery worse. (That is what informed consent is about.) Where is your proof that the use of antipsychotic medications shortens the length of psychosis as compared to say sleep medication, and being in a safe supportive environment? (eg. Similar to the ‘Soteria approach’ rather than the ‘locking them in a room’ scenario which seemed to be what you thought to be the only alternative to prescribing antipsychotic medication) Some people report good responses to antipsychotic medication in the short term, while others seem to have worsening symptoms and terrible side effects even in the short term (within the first few months for sure and maybe much sooner too). For a person who does not respond well to a low dose of antipsychotic medication, their fate seems to be to be given increasing dosages. There are many people who are not recovered, many who are severely ill who are left on antipsychotics. I wonder how many ‘brief’ psychotic attacks have been changed into chronic illness due to bad reactions or poor tolerance to antipsychotic medication. I noticed you did not address my point that you find the severely affected in state hospitals as well as on the street.

  • Shook,
    Your comments remind me of the “good, modern” treatment that I witnessed at a very respected hospital. The biggest problem I have with your comments (and the treatment at that hospital) is the lack of humility and uncertainty that leads to justification for forced medication. You cite extreme examples of horrific behaviours which also could have been prevented by providing other kinds of support or ‘forced safety’ (eg. humane confinement). Prescribing antipsychotics without informed consent, when it is not known whether or not it will worsen someone’s condition, is negligent.
    We heard this kind of faulty reasoning repeatedly. (e.g. medication is not proven to work, but if the patient gets worse than we have to use the medication (that is not proven to work). We was similar faulty reasoning that worked to always protect the idea that’current best practice’ is best. (e.g. “people get sicker in the hospital after being medicated because the disease is progressing” etc.
    You also say “I’ve met people who never took medications and the disease process was so severe that they were constantly preoccupied with voices and paranoia. They didn’t talk or interact with anyone, including their own family. Do you know what happens to those people? Look to the streets.” What about also “looking to” state hospitals where people like that,drugged with neuroleptics, sit and ‘don’t talk or interact with anyone, including their own families”?” Dr. Torrey talks of these patients in his books. I think the medical community refer to these people as ‘treatment resistant’, yet they keep them on neuroleptics anyways, probably killing any chance they have of getting better in the future.

    Some people who are in a severe state do seem to get better after a number of years and finding the key to how to improve the chances for more and more severely distressed people, is going to require the humility and openness that most psychiatrists seem to lack. In 25 years from now, what parts of ‘current best practice’ will the more thoughtful psychiatrists be apologizing for? Given all the uncertainty of treatment, the best ‘good’ psychiatrists can do at this time is to provide information about the uncertainty of treatment, provide full consent for treatment, fight against the current coersive aspects of ‘treatment’ that exists in the system and work with the wider helping community to ensure safe, humane spaces for people in extreme distress to be until they can move forward.

  • I am grateful that you can both see and admit to mistakes about how you understood schizophrenia, and the damage caused by antipsychotics.

    To me the next obvious obligation would be for you to try and ‘undo’ some of the damage caused by the misguided beliefs of your profession by speaking out against forced treatment, and by speaking for ‘informed consent. ….Will you? People in acute states can be kept safe without forcing them to take antipsychotics. No person should be forced to take drugs that have such terrible side effects and have not been proven to be more effective in the long run.

  • Thank you for this article. I also believe hope and humility are the key ingredients to providing support to people in extreme states. Passion and caring are important too, which made me very annoyed with the statement that professional said to you that you were “too passionate to be able to critically analyze [your] ideas”. This statement seems to me just another way to undermine a narrative different than the dominant narrative; even if it is phrased in a more ‘positive’ way ( probably because the person also likes and respects you). I personally have never seem any professional critically analyze their ideas more than you have over the course of your journey. I , for one, hope you keep blogging even after you stop working.

  • Dr. Gold,
    In case you are aware of this article and are reading these responses to try and better understand why people have the reactions to psychiatry that you describe, I thought I would add this comment. You seem like a well- meaning person, but you do not seem to understand the ‘humility’ and ‘uncertainty’ that is so necessary that would enable you to approach your patients in a truly helpful and respectful way, in a way that would ensure that you did not add any harm to very vulnerable people

    I will just use one example (from the many I saw) from your article, that demonstrated this lack of humility and uncertainty in regards to what is ‘best treatment’ for your patients. You write “And, without understanding the therapeutic benefit of engaging in connections with others on the unit, it can feel restrictive to have visiting hours and not be able to have a significant other or family member spend the night.” It is such an arrogant position that you take here, particularly given the very limited training in counselling that many psychiatrists seem to have. I think it is pretty established by now, that stress and fear (and lack of sleep) exasperate the situation of a person who is in extreme distress. You assume, from this statement, that the surface connections that a person might develop and engage in during the limited time of an inpatient stay, are more effective than the patient’s deep trusting relationships, to help him/her through such a terrifying, fearful time of troubling thoughts and strange feelings. I think you should let the patient let YOU know how he/she feels the most safe and what would be most helpful. I know when my loved one was experiencing very confused thinking, a terrifying night spent alone in an inpatient unit resulted in staying awake all night and a much worsened condition. The response from staff? “It is very common for people to get worse once they come to hospital”. (My thoughts about that response: “No Wonder”).

    I hope I have been able to clearly express to you, why, as a family member, I don’t think you ‘completely get it’. If you are serious about wanting to be an ally to patients, why not read the blogs on MIA of psychiatrist Sandra Steingard , who has worked for decades in this area and who advocates ‘slow psychiatry’. She is always responsive to emails from all, so I am sure you could get a lot of guidance from her.

    If anyone from MIA is posting directly to Dr. Gold’s article, could you let her know there are responses to her article over here on MIA?

  • Wonderful! Such a hopeful new direction. Thanks for all involved in creating this program.

    On another note…. I wanted to draw people’s attention to the petition that is going around for Reid Bertino (who recently wrote the blog ‘I am insane’. ). Details can be found in the ‘Support for Reid’ post in the organizing forum. It would be great if he got a bunch of signatures on his petition

    https://www.change.org/p/cheryl-strange-ceo-at-western-state-hospital-free-reid-bertino-from-a-life-sentence-at-western-state-hospital?

    recruiter=647244026&utm_source=share_petition&utm_medium=facebook&utm_campaign=share_for_starters_page&utm_term=des-lg-no_src-no_msg

  • Hi travailler-vous,

    I only have just now (a year and a half later) seen this wonderful, heartfelt response you wrote! (I guess I saw the first comment and still I don’t use the ‘notify me’ button that is available on this site very efficiently.) I am not sure if you will ever see this reply, but I realized that I haven’t seen you commenting much anymore and just wanted you to know that I hope all is going well, and I too wish you the very best!

  • I appreciate the above discussion about the importance of compassion and of avoiding simplistic judgements.

    For me, however, the main problem with ‘blame’ is when ‘outsiders’ (in particular those outsiders who are in a position of power such as therapists and psychiatrists), generalize their experience or observations to assign ‘inaccurate blame’ based on theoretical constructs (even theoretical constructs that have a lot of value). This is why I appreciate so much the following paragraph in this article:

    “A better approach is for professionals to be uncertain about what happened to cause the psychosis and what is going on now, and to support everyone in exploring possible viewpoints or understandings, in a way that supports taking personal responsibility for mistakes but also seeks to avoid inaccurate or excess attributions of blame or responsibility.”

    For me – this point cannot be emphasized enough given the wide variability that exists with people who extreme states -and given the terrible things that have happened in the past (and that continue to happen) both to the people who experience extreme states, and also to their families. The answers need to come from within the person’s particular story: ‘what happened to you’, NOT what others tell you has happened to you. Another quote of Ron’s that I have alway appreciated is when he says something like – ‘people can break their ankle from a big accident, but also from stepping off the curb’. We must not make people feel that their ‘reasons’ aren’t ‘significant enough’ or ‘bad enough’ to warrant such an extreme reaction.

    That being said, it makes complete sense (and there is lots of research to support the position), that the more adversity you face, the bigger the chance you have of a extreme reaction; so I know it is also important to not lose sight of that, nor to lose sight of the importance of creating environments that allow a person to freely talk/explore ‘what happened to them’.

  • What a great, practical initiative. If there is any positive response from ‘Navigate’ to ‘updating’ the Family Education manual, I wonder if they would consider using “The British Psychological Society Report on Psychosis” as a resource manual – I am not hearing very much about that report any more.

    This is so discouraging – all the new information that I think must be slowly getting ‘out there’, and then hearing about such a backward manual.

  • Extremely well written and important critique. I find that the ‘changing face’ of psychiatry (e.g. the anti-stigma campaigns, the inclusion of personal stories such as in this documentary, the introduction of ‘open dialogue’ type interviews in some inpatient units); masks the more fundamental problems of mainstream psychiatry that are ongoing (lack of informed consent for treatment, simplification of complex issues, the psychiatrist as ‘director’ rather than `consultant’, lack of information about other routes to recovery).

  • I had wanted to also say that having a huge wealth of data like this from families (which could include recording drug use, resulting behaviours etc. ) could also help with finding answers to questions such as which people in extreme distress (and when) might benefit from the short term use of neuroleptics, and which people in extreme distress are further harmed by using these drugs, EVEN in the SHORT term.

  • I also love this post and love the initiatives. I too think a “family” bucket is so important for the reasons rossaforbes describes. In addition, I think that there is such a wealth of information that the families of people going through extreme states carry, that is not being tapped and which could go a long way towards providing information about the different ways, different people go through extreme states, and what recovery can look like (with and without drugs). If there was some kind of anonymous, online way for families to provide detailed information about, say, the progression of the participation in simple daily life activities, and different things tried, etc., etc, it could (after years) eventually provide great help, hope and information for future families. Of course this kind of information is most powerful coming from the survivors themselves, in their personal narratives; but I am talking about something a little bit different than that. I am talking about recording things that could be compiled to provide objective data, for all sorts of things. I am also talking about recording things during the times when people are so out of contact they are not yet speaking for themselves. This could provide quite a different narrative that is currently provided by the mainstream psychiatric community.(You know all those gloomy predictions about what it means if ‘the state of ‘psychosis’ lasts for 6 months’ etc.) To give just one example: If one knew about other people who had remained lying down in bed pretty motionless for about 21 hours each day, and that this went on for months, and yet the person then recovered from that state without being forced to take the drugs (which seemed to have preceded so many of the problems in the first place), one would be able to function with much less stress when supporting a loved one in extreme distress.)

  • HI Ron,

    Thanks so much for including the video on the application of the compassion for voices approach. The 5 minute video of compassion for voices is something we have watched a lot, and this lecture from Dr. Charile Heriot -Maitland was very helpful to me as a support person. I like how he talked about developing one’s ‘soothing system’ and how important it is -it may me feel so hopeful about how the environment we are trying to maintain in our home may be allowing our loved one to eventually work through things. I liked his humbleness, and how much he believes in the brain’s ability to heal itself. There was even some very simple practical suggestions (a breathing app which has a visual to help someone slow down their breathing) that we thought might be useful to show our loved one.

    I wonder if there is any way that Dr. Heriot-Maitland and Robert Whitaker could add this (the 5 minute video and the lecture) to the ‘education’section of MIA so more people would realize it was out there?

  • Hi Oldhead,

    I do know what you mean about ‘psychosis’ being the word for the most extreme form of “mental illness” and have experienced first hand how that word changes everything in the eyes of both the mental health system and society. This reminds me of Noel Hunter’s articles about when she has tried to press psychologists who ‘treat’ dissociative disorders to describe how ‘dissociation’ is different from ‘psychosis’, and how the professionals’ responses indicated how uncomfortable they felt about there being any connection between dissociation and psychosis. I think I am going to be more careful in the future to talk about ‘extreme distress’ or extreme states so as not to push my loved one further into that ‘box’. Perhaps not having a ‘word’ can help us look at ‘individual situations’ as per the open dialogue approach.

  • Hi Truth In Psychiatry,
    Your comment highlights exactly my own concerns about this discussion, and I think it is a crucial ‘addendum’ to have with the article! I do think it is important to consider all the risks and factors that may play a role in an emotional breakdown, but unless professionals or other helping people approach any specific situation with a great deal of humility, and without preconceived ideas about what has happened, they run the risk of doing great harm. This is so especially true for something like psychosis that seems to have so many different causes both physical and emotional. (Like Paris says things such as heavy metal posioning, but there could also be other physical reasons that we haven’t yet figured out) That is why I also believe that the open dialogue approach is such an important approach to take.

    I also think that it is so important to so careful when writing about theories, and to always be careful not to overstate theories, I actually feel more concerned about the lack of ‘accuracy’ than about whether something sounds ‘parent blaming’ or not. For example a statement such as “so much of the trauma that shows up in psychosis is actually preverbal experience contained in the body”, is overstated, in my opinion. It might be or it might not be, and though there can be great value in working through plausible theories, one must be always aware that they are theoretical, and treat ideas related to theory with the necessary humility. Likewise although I found this idea interesting and think it could have some truth “….if some terrible trauma happens later in life they’re less likely to develop psychosis due to having a stronger foundation (they might develop PTSD or mood problems instead)”, I don’t think it is NECESSARILY true, It could be that people’s bodies react in different ways to trauma.
    If writers could be really careful about how they state theories and how they talk about ’causes’, then maybe we could avoid these kind of back and forth comments, and discuss the content of the article more freely.

    Otherwise I really appreciate this article and commend both Paris and Matt for their work!
    ps I have tried to send a comment about this 3 times and I never see it so hopefully multiple comments wont be posted!

  • Truth in Psychiatry,
    You have described perfectly my own concerns about this discussion . I too appreciate very much the work of both Paris and Matt, but I feel your comment here is a very necessary addendum to this article.

    Paris and Matt , Thank you so much for this article. I am so sorry to hear about the New Zealand health care system. I hope, Paris, you will be able to continue your good work in some capacity that will lead to more positive changes there.
    About the ‘names’. I really agree with what someone said on this comment thread that saying someone is ‘going through psychosis’, sounds much different and better to me then describing someone as ‘psychotic’. Saying someone is psychotic sounds more like a ‘character trait’ rather than a hopefully temporary state they are going through. It also lends itself (in popular culture) to being used interchangably with other terms such as ‘psycho’ or ‘psychopath’.

  • I also could not believe the effects I witnessed in my loved one when Olanzapine was introduced. I always wonder how much of the terrible time they had afterwards was due to drug withdrawal vs symptoms of distress (for lack of a better word). I often think in our case if it was both-that the drug use and withdrawal fueled the distressed responses into something unmanagable. I was curious if you experienced all these horrible symptoms after ‘tapering slowly’, or if you were forced to stop more suddenly, and how long your symptoms went on for.

  • “The anti psychotics certainly work short term during crisis periods”…I was reading over my response and just wanted to add that although anti psychotics are reported to to help some people in the short term, in our case I truly believe that is what set things off on a much more serious course for our loved one. I can’t stress enough how important I think it is to ‘WAIT” (for at least 6 months if not a year) after a first episode before even considering drugs because of this possibility, and in order to try and figure out ‘what’s what’ in terms of the ‘2 continuums’ model. I think Sandra Steingard’s ‘slow psychiatry’ speaks to this by saying ‘hold off for as long as possible with drugs.

  • Knowledgeispower, as a family member, I want to thank you so much, for your comment; and I completely agree with what both you and Matt say.

    I think the open dialogue model is so powerful as it doesn’t presuppose any particular cause. Instead, as least how I understand it, issues and factors come forth through the discussion of the person with their community. If the decision making power is in the hands of the individual, then hopefully his/her community could also exclude any relationships that the person felt were too abusive to include. If the way forward with healing comes from the indivudual circumstances of the person, like in Open Dialogue, then the community is protected from ‘theory driven’ therapies (e.g. the schizophrenic mother as you describe above) that can so severely damage the individual and his community.

    I often think of going into psychosis ( from my simple ‘family member’ perspective) as being a result of two continuums. One is ‘vulnerability’ to psychosis (which would include all the possible medical, genetic , hormonal, diet, physical environmental toxins, a person’s individual body ‘response’ to stress, etc., etc, which may or may not be turn out to be things that can contribute to psychosis). The other continuum would be all the adverse ‘psychological’ events that a person may experience (jtrauma, abuse, social issues, bullying, things happening at critical developmental times etc.) If you have enough of ‘one’ continuum (eg. drug toxicity as described in Katinka’s article about the `drugs that steal`), you don`t necessarily need anything from the other continuum to make you go into psychosis. If you are a person who suffered severe abuse or trauma, it is amazing if you don`t go into psychosis.

    As a family member I look back at the pre-psychosis time, and think that there were certainly ways I could have been different (if I had understood more ) to better support the extremely sensitive, ethical and creative soul I had been entrusted with. However, more heart breaking for me, is how I reacted during the time of the break down. The way my loved one was being, was so exactly similar to the adolescent angst that èveryone`talks about. I had no idea that the depths of the suffering might have been much greater. Then, extreme anxiety set in as I did not want my love one to have the symptoms that could be so hurtful to them, and that are so full of stigma in our society (..spoiler alert …if you try to ignore or suppress them – they don`t go away). (Just as an aside – I was anxious about how the stigma would affect my loved one’s life- not about any concern about stigma for me as a family member.) Finally Rossa Forbes has spoken so eloquently about how a family`s treatment of a loved one can change as a result of the way a person in psychosis starts to act and be towards others. Those early days when I tried to ‘criticize or cry`in order to reach my loved one, and to bring them back to be the person I thought I knew so well, will also be always burned into my memory.

    Imagine if I had instead being enveloped into a supportive, accepting community which could have guided me through my reactions to my loved one`s extreme distress. Imagine what a better support I could have been and what a difference that might have made to my loved one.

  • Hi Circuscats,
    Thanks for your comment. I am so happy this article is reaching such a wide audience. it is so important to be having this discussion with people who have different opinions about the value of psychiatric medication rather than “preaching to the choir”, so to speak.

    Katrina’s response to Kate below seems to speak to some of your concerns. I just wanted to add that I have been reading MIA for a few years now, and I find that people here do not argue against an individual’s experience, or individual choices with drugs. Some people who post here take psychiatric medications. However, what a great many people, including myself, have a problem with, is when people have not given ‘informed consent’ before taking these drugs. `Informed’ consent means knowing all the possible risks of taking these drugs, and also being given an honest ‘evaluation of the literature in terms of any drug’s effectiveness. When you suggest that Katrina should not publicize her experience because other people might not take medications, you are, in my humble opinion, supporting that people should not be given informed consent. This is what the psychiatric community has been doing for decades, and I think is one of the major reasons why we can’t get to the truth of what helps and what does not help. Also I think it is important to realize that Katrina’s story is not just about a ‘drug company’ cover up , it is about psychiatrists not believing and not being able to see that drugs were causing her symptoms. This is very serious indeed and povides very strong support as to why Katrina’s story should be spread widely and loudly.

  • Thank you so much for this article which is sure to bring a lot of attention to the dangers of psychiatric drugs. What will be so convincing to people about your story is how quickly you returned to health after stopping the drugs. Your symptoms seem to be entirely related to psych drug use.

    There are also many other people who suffer from psychosis, severe apathy (unable to dress), etc. independent of psych drug use. However, I believe there could be many of these people whose condition is made worse by psych drug use. If symptoms can be ‘created’ by drug use as in your case, it only makes sense that these same symptoms could also be ‘made worse’ in vulnerable people. I get so irritated when I hear psychiatrists argue about when, or whether ‘relapses’ are due to ‘illness’ rather than ‘medication’ , as if it is necessarily an either/or situation. So called ‘treatment resistant’ people are often left for years on drugs, never getting the chance to see what would happen if they had years to slowly recover without the psych drugs, drugs that could very likely be hindering their recovery. In the pre- drug area, there are stories of people recovering after years of languishing in mental institutions. I wonder if one ever hears these kind of stories now about people who have spent years on psych drugs in mental institutions.

  • Hi Selena,

    I just came back to this post and saw this request you have made for ongoing support from a group of people in terms of an online forum. I just went to the forum and saw that there were no responses to your posts and that you have stopped posting. I wonder if it is because, like me, people commented on Reid’s post and then moved on so never saw your request. The other thing I wondered about is whether those of us who do not feel it is safe to post publicly, feel leery of signing up to another site that requires your name and email.

    I for one would love to enter into discussions with you and hear your updates about Reid. I know exactly what you mean when you say that your world becomes very small in terms of who is willing to listen on an ongoing basis to your situation. And just so you know, reading your comments and hearing about how Reid is so concerned about your well being , makes me think that you are exactly the type of person I would like to discuss these things with.
    Do you think that you could open a forum for Reid on the MIA site ? I would certainly be there very regularly and believe it would support me as much as it would support you.

  • I didn’t see in this article anywhere whether they followed the Open Dialogue practice of holding back from using antipsychotic drugs until much, much later. (and then in low doses for a much smaller percentage of people). To me this is a very crucial part of the Open Dialogue format. I hope ‘collaberation with patients’ means an absence of ‘forced treatment’ and truly ‘informed’ consent when medication is used.

  • I have really appreciated your article and your comments here, particularly in this paragraph: “… it is not necessarily trauma and abuse that causes psychotic experiences/withdrawal. It can be stress of any kind, isolation, fear for any number of reasons. The potential causes are many and they all interact with each other. But I think there is always a set of reasons and a story behind why people are withdrawn and psychotic at a given time. Such experiences are not a meaningless brain disease.” Our family has been working very hard to try and provide the type of environment at home that will best support our loved one. It has been a few years now, but what I realize is that our loved one is at least no longer experiencing the type of ‘terror’ I used to see. I still see distress, and I worry very much about the limited communication and interaction with the world. Hearing stories like yours are vital for giving me the hope and the confidence I need. I believe as more people bravely come forward to tell their stories, the hope these stories provide will snowball and more and more families will feel empowered to stand up to the mental health system when their loved one needs them to stand with them.

  • Just wanted to let you know that I am with you Liz in both your response above to Harper West above, and this response here. What is happening in terms of the dx and medication of children with ADHD is truly horrifying. However I find that Dr. Berezin’s posts that explaind what he believes to be the causes of different conditions that get labelled as psychosis, scizophrenia, ADHD etc., (while containing a lot of good stuff), are full of simplifications and over generalizations. Why his posts are disturbing to me is that he is a professional – a psychiatrist- who presents his theories as if they are ‘facts’. Our community has suffered enough from the `over confidence’ (to put it politely) of psychiatrists who claim to know things to be true that they can not possibly know. I think it is sad as I think he could have so much to offer if he approach these topics with more humility and openness. I actually think MIA should put disclaimers or do something on posts (from professionals in positions of power) when they present theories as facts. In my opinion posts like these (and responses like Harper West’s response) can really undermine the credibility of MIA.

    Mr. Berezin could

  • Hi Truth in Psychiatry,
    Whenever I read your wonderful story, I worry that psychiatrists like Pies will dismiss your input by saying that your son had a “brief psychotic disorder” and that people with brief psychotic disorder do recover quickly, and that psychiatrists see this happening frequently after standard ‘best practice’ in the hospital.
    Indeed when my loved one was in the hospital and put on antipsychotics, we were told that being on antipsychotics would ‘hopefully just be for a couple of months’. The problem was that for our loved one, milder symptoms morphed into much more serious symptoms first after forced commitment, (what kind of logic is behind separating people from the people they know and trust at the time when they are experiencing troubling thoughts and confusion over reality!), and then again after drugs were introduced , withdrawn and changed. Of course the ‘narrative’ of psychiatry insist that all worsening symptoms are always due to ‘illness’ not ‘drugs’.
    I wish so much we had been able to give our loved one the type of support that you gave your son –and wonder if our story would be more similar to your story if we had.
    This is one of those many areas that psychiatry refuses to consider – does their “treatment’ (immediate use of antipsychotics, lack of ‘wrap around’ support from loved and trusted people etc.) change the trajectory of some people from having ‘a brief psychotic disorder’ (to use psychiatric terms) to something more severe and chronic. If psychiatrists believe in brief psychotic disorder (and they do) why on earth does their ‘best practice’ not, AT THE LEAST, include a ‘wait and see’ period of at least 6 months, before subjecting people to drugs which they know have such huge effects, when they themselves know many may recover quickly without them,
    This would all be figured out if ‘ethical’ studies for first episode psychosis, such as the one Robert Whitaker describes in his response below, (and similar to your son’s experience) were undertaken.

  • Alex – I found reading about your story and then your questions about why some people heal and others get trapped very interesting. This is the question most prominent on my mind as I try to support my loved one on the journey back to wellness.

  • “It rises to a level of groupthink that I have never before encountered in any societal institution.”

    Such a chilling comment and so accurate – this was our experience too. I join others who give you a big thank you for writing such a powerful post. Best wishes for your further recovery.

  • Eric,
    I don’t want to side track the conversation on this post, but it sounds from your comment that you are ‘out’ of the ward now. I sure hope that it is true and I wish you all the best.

  • Hi Selena and Reid,
    What a heart-breaking story and so terrifying and so mind numbing to try to live through such an unjust system.I can certainly support all you say about the crazy -making responses that come from ‘the psychiatric team’. From our experience with our loved one, everything you say resounds with truth.

    Two comments Reid made particularly resonate with me: “Be open. Be honest. Be transparent.” I’ve come to understand that this motto only applies to the patients, not to the hospital. The hospital is rarely held accountable for anything, and legally doesn’t have to be held accountable. “……We found this to be so very true and so very scary.

    The second quote really underlines what a caring and thoughtful person Reid seems to be:
    ” I’m not just writing for myself. Most of the patients here can’t speak up for themselves like I can, and therefore are utterly helpless to defend themselves against the lack of accountability.” It is so true that so many people that suffer are unable to write such a compelling post (or any post) Thank you, Reid, for thinking of them even as you are in the middle of your own terrifying experience. And Serena, as a mother, my heart goes out to you – it is obvious from this post what a great support you have been to your son.

  • My thanks to all who organized and participated in this Vigil, and my thanks to you Sera for your articles and your perseverance in keeping this issue in the spotlight. I believe this is exactly the type of tangible action that will eventually lead to change (even if it feels that noone is listening). Let’s hope for at least some small positive change on Sunday. At least the Globe reporters I am sure are now reading all of your articles .

  • As always – thanks so much for your caring and persistence. It has really helped as we try to support and help navigate the best course for our loved one.

    I think the reason why you feel like a ‘dog with a bone’ is because your critics either can’t or won’t really listen, consider and give the proper weight to your arguments.

  • Thank you Bonnie for a very insightful article.

    You say ” oppressed groups, harbour an inherent distrust of the establishment, have a standpoint which, while hardly foolproof, uniquely positions us to see through the official line”. This helps me realize how difficult and in some cases impossible it can be for people for whom ‘institutions’ have always provided a sense of safety and security, to really `see’ what is going on, and to understand what is the best way to go forward.

    Now that the ‘security blanket’ of ‘institutions we traditionally depended on have been ripped out from beneath us, our way forward to help our loved one, has been fraught with so much self doubt and continual reanalysis about what is the best way to promote recovery, and we have felt such a lack of support from our ‘traditional’ community (despite the best of intentions in some cases). Luckily we have been able to slowly forge a new community helped by people who have a much better understanding of how inadequate systems are for oppressed groups.

  • Thanks so much for this analysis and update.

    It make me so relieved to think that Garth is now at home with his family and being treated with empathy and compassion. However, it frightens me so much to think that if this could happen to someone who did not have the symptoms of ‘schizophrenia’, what chance would a person who did have more symptoms of ‘schizophrenia’ have had to escape from that type of torture. It is truly horrifying how fragile human rights are once someone is diagnosed with mental illness.

  • I also would love to have this very difficult discussion discussed more, and I would if both Dr. Breggin wrote more about their opinions and feelings on this issue. I often talk about differentiating between ‘forced safety’ and ‘forced treatment’ but I understand there are so many ways people can feel traumatized, and I am sure ‘forced safety’ would look very different depending on how much respect/understanding someone had towards the person.

    Based on our family’s situation, I would argue that forced treatment by antipsychotics should never happen even in the short term due to the lack of science behind the long term effects of even short term use; because of the potentially very severe side effects, but mostly because it is our belief that the introduction of antipsychotic medication set our family member on a much more severe course of illness.

  • Thank you Dr. Breggin,
    This particularly resonates with me:
    “Going to a psychiatrist, or to other healthcare providers, exposes the already distressed individual to the risk of incarceration and forced treatment with little or no due process…… People often avoid seeking help for fear of being locked up and/or forced to take drugs, when voluntary psychotherapeutic interventions can be lifesaving”.

    As a family member trying to provide a healing environment outside of the traditional mental health system we found the ‘threat of involuntary treatment’ seriously impeded our efforts. We needed to be constantly vigilant that “helpful citizens” did not call for ambulance etc. that could put our loved one at risk of being forcibly medicated. The stress of this was enormous, not to mention that it seriously limited our ability to hire/find other people to help us in our efforts. Luckily we survived the ‘intense period’ and our loved one has moved away from that stage. Even now, though, his recovery process is limited by this ‘threat’ as we can’t encourage or support his independence as much as we would like to (going for walks alone, allowing him to express himself loudly and in whatever way he needs to at home for fear of others overhearing etc.etc.).

    In my responses I often make the distinction between ‘forced safety’ and ‘forced treatment’. I wonder what you think about having ‘Forced safety’ as an option for those very difficult situations? (to be used very carefully in situations such as helping someone avoid jail, or hurting themselves, or as a way to help more people support the end of involuntary treatment)

  • I am so glad you will try to get this piece into places like Huffington Post and Psychology today. I think it would be so valuable for the average citizen to be able to compare the pieces back and forth.
    I followed the blogs of Pies and Frances and tried to argue points and at times they seemed to be genuinely trying to listen to what responders were saying and trying to use logical arguments to back up their points. But as time passed it became too mind numbing to participate – I could clearly see what could only be described as this ‘cognitive dissonance’ you speak of, in action. Frances present studies that supported their position, and then Pies responded to points that had been made by critical studies only when they came up from commenters. A series of papers were written, each becoming more ‘sleek’ then the previous one in terms of presenting their case. Seeing that the whole discussion was initially prompted, I think, by an ‘overview of studies’ that had recently been published and that did NOT show that psychotic medications improved outcome, it was mind boggling to see the final article by Pie (in The Psychiatric Times) be given the title “Long Term use of antipsychotic treatment: Effective and often necessary with caveats” . How does “effective and often necessary “come from a review of studies that does not prove antipsychotic medication improves outcome?

    Frances and Pie have both spoken about how forced treatment is either a ‘paper tiger’ that rarely happens, or that ‘consent’ is important. Yet our experience with a very trusted and prestigious hospital showed us that forced treatment happens regularly, and very quickly, and neither of these men seem to either acknowledge or speak to this issue.

    The most compelling point for me is described when Whitaker writes the following:
    “At the same time, what does it mean to be on the drug and to not have relapsed? If 70% of the drug-maintained patients failed to improve or worsened, with only 5% of the hospitalized patients who stayed on medications discharged, what is the state of a “non-relapsed” patient? Is a patient who sits quietly on a ward in a subdued state judged to have been “non-relapsed”? If someone is still too dysfunctional to be released, how does that qualify as a “good outcome,” e.g., non-relapsed?”
    I feel like I have figuratively jumped up and down screaming about this issue, saying “what about ‘do no harm’ ” ; only to have ‘good’ psychiatrists reply “well that is how it works in medicine…you do your best judgement with what you know at the time”…..How can it possibly be in anyone’s best interest to be given medications (often without informed consent) that leaves them in such a subdued and dysfunctional state….for years!!!!!

    I remember Sandra Steingard’s describing how she felt after she read Anatomy of an Epidemic, and how it caused her to rethink Psychiatry. I wonder why more psychiatrists did not have responses like that. Perhaps they have, but perhaps many of them are afraid to voice their opinions as Sandra Steingard, just like Robert Whitaker, have been viciously criticized by prominent psychiatrists in the field, when they have tried to present alternatives to the current ‘narrative’ surrounding the use of antipsychotic medications.

  • Another article that is extremely helpful in a practical way for our family.

    You say:
    “Instead, we may find ourselves at war with ourselves, even long after the trauma is over. One part of ourselves may want to remember and focus on the trauma and being hypervigilant and distrusting, to avoid chances of the same thing happening again, while another part wants to forget the trauma, and to relax and start trusting again so we can go on with everyday life.”

    I wonder if this is exactly what we are hearing when we listen to our loved one have arguments with himself about whether or not he is allowed to “be okay”. (I would love to write more details but can’t for privacy reasons as it is not my story to tell……)

    It is funny how long it takes (at least for me) to really understand new ideas that are different to my set way of thinking. I don’t know how many times I have watched Eleanor Longden’s video about “Stuart and his Voices” and how much I have thought about compassionate based therapy and yet still didn’t put it together that the ‘arguments’ we are hearing might be related to feelings of lack of self compassion rather than anger towards others or situations, (regardless of how/where the difficulties arose in the first place), and how further developing a compassionate self seems to be so crucial to ultimately solving difficulties.

    I try to not say too much in response to my loved one, just make assurances that I am listening and trying to understand, but sometimes when I have made comments back along the lines of recognizing the need for self compassion (…about not blaming oneself etc.), the resulting calmness has been amazing.

  • I couldn’t agree more about the ridiculous nature of the term’ ‘treatment resistant’ depression. It joins a long list of comments made to us by psychiatrists in the hospital that involved some form of circular reasoning.

    Thank you for your article Christopher. What impressed me the most is how carefully you write about your experience, acknowledging the uncertainty of what caused what etc. Thank you

  • I think it must have taken great courage for you to write this piece. I wonder if you realise how much comfort, relief, and understanding this will bring not only to the people who have suffered in this way, but also to their families, friends and loved ones. Thank you

  • I find what you and your family are being forced to suffer through unbelievably horrific. Is there no way of legally arguing to have the court document changed so you could support your daughter at home? Although we dont have a lot, I would certainly (annoyomously) contribute to a fund supporting legal fees for your daughter’s case and I bet a lot of other people would too.

  • Thanks so much for sharing that! That was such an amazing integration of information – one could speculate how all sorts of factors might contribute to either increasing or decreasing how anxiety and stress affect the brain to more or less degrees – from childhood adversity or abuse, from all types of adversity, to nutrition, neurological suseptibility from toxins or genes, from accidents and head injuries, from having more developed sensibilities towards justice, adversity from peers, family crisis or dysfunction, from having more imagination, from hormonal changes etc, etc. etc….and makes it glaringly obvious how inadequate neuroleptic medication is as a solution.

  • ….still can’t stopping thinking about this article and about Allen Frances and Ronald Pies ‘responses’ over on psychology today….I guess God never granted me with the serenity to accept the things I cannot change…….

    So what I am now wondering is, is Pete Earley going to post this piece by you as he said he would ? – You do indeed talk about the selective use of antipsychotics in this piece:

    “Instead, I think the scientific literature argues for a dramatic rethinking of their use, organized around two principles:
    Try to avoid immediate use of neuroleptics in first episode patients, as there will be a significant percentage who will recover without the medications (but aided by other forms of treatment), and this is a good outcome for those patients.
    Once the medications are used, there should be an effort to minimize their long-term use, with regular support for drug-tapering protocols.”

    (The one thing I wish you had also added in this summary is that another reason to avoid immediate use of neuroleptics is because some of the people who may have recovered without medication (but aided with other forms of treatment) , become worse AFTER medication is given, which may mean that the medication initiates a more chronic course of illness in some people. – I know you have written about this and why this might happen extensively, but I think it belongs in the summary.)

    I guess I know the answer is probably no, that Pete Earley did not publish the piece but I wonder what he would say if asked to publish a piece by Sandra Steingard that was endorsed by you? At the very least I would like families to become more aware that they should at least support their loved one by taking `time’ to research and figure out the best course of action (e.g. months rather than the hours or days that usually occur in inpatient units) before starting on such a risky path as taking antipsychotic medications. (…My apologies if suggesting that Pete Earley might publish such a piece sounds very naive!)

  • I know I have already responded to this post, but I can’t stop thinking about it, and the more I think about it, the more upset I become. I can’t believe there has not been a huge response to the recent study by epidemiologists at Columbia University and City College of New York. Does it make any sense at all that ’thought leaders’ would spend their time criticizing Mr. Whitaker’s response to that study, rather than discussing the study and what the findings might mean to ‘evidence-based’ practice? I had a similar strange experience when I asked for opinions about the study from local ‘thought leaders’. What resulted was a tirade against Robert Whitaker, despite my protest that Robert Whitaker did not participate in this review. The reaction was certainly one of ‘shooting the messenger’, and no one was paying any attention at all to the ‘message’. I guess the reason people do this (consciously or unconsciously) must be because they are unable or unwilling to deal with the information. It is so unfair to Mr. Whitaker, although I must say, I have never seen such an example of ‘grace under fire’ as he displays in the face of so many untrue insults.
    Like Mr. Whitaker, I believed in the mental health system until we had a personal encounter with it. Our experience was very recent, was at a top notch center and the things that happened to our family were considered ‘best standard’ practice. I believe the professionals involved in our situation truly wanted to see our family member recover, and a few of the many professionals involved even were truly empathetic and honest. Yet the treatment was very wrong for our family member. I believe the treatment greatly worsened our family member’s symptoms, and put our family member on a much more severe (even life-threatening) path. When we started to question the ‘narrative’, the change in attitude of many of the professionals was remarkable. The only way our family was able to piece together how to best help our family member, was by gaining access to the type of information that Mr. Whitaker has brought to light: We found our answers in what many here would call the ‘true narrative’ of psychiatry. We think the ‘faulty narrative’ of psychiatry changed our family member from having (likely temporary) significant difficulties, to having very severe, chronic difficulties. The ‘faulty narrative of psychiatry’ which does not allow people to view coercive treatment or psych medications as potentially harmful to some people, (even in the short term), prevented our caring professionals from hearing our concerns, and from figuring out what was making our family member sicker. Thanks in a large part to Robert Whitaker’s investigative journalism and to the information, education, people and ideas we have accessed through MIA and the recovery movement, our loved is now on the road to recovery rather than remaining in a chronic state.

  • Robert Whitaker,

    You must be so exhausted trying to present this information over and over and over, in response to critics who twist what you say, accuse you of things you haven’t said, and NEVER< NEVER<NEVER actually talk to the points you make. There must be so many psychiatrists reading this post – but I wager not one would be able to write a logical summary as to why or how this carefully worded, extremely thought out presentation of research could possibly be thought of as 'simplistic' or 'categorical'.

    Thank you for being `the messenger' and having the courage to put up with all the `shooting' that comes with that role.

  • Fiachra,

    So much of what you write resonates with our situation. I agree wholeheartedly that … ” when stressed the mind doesn’t have access to ‘higher reasoning’” … and thus that …”Extreme anxiety can be classed as psychosis’… (and as ‘catatonia’). By any chance are you going to, or have you already written a ‘personal story of your journey through and out of the Mental Health System?

    …The illogical reasoning some doctors use is truly incredible….. I am keeping a list that I will post someday. Here is an example – one doctor said after my loved one got much. much worse IN the hospital… “your child does NOT have depression…..but IF your child DOES have depression it started before your child came into the hospital” (how is that for covering one’s ‘behind’ LOL) .

  • Steve,

    I just wanted to say that I appreciated your comment, and your distinction between ‘taking responsibility’ and ‘blaming ‘ . Another important distinction between the two words is that ‘taking responsibility’ sounds to me more like ‘self evaluation’ which is so important and as you say often painful; whereas ‘blame’ sounds more to me like ‘outsiders’ looking in and deciding what the problem is, which may often be inaccurate or too simplistic. This relates to my comment above.

  • Hi Alex,
    I think why there is a the big problem with the ‘blame’ issue is not about the question of whether or not parents should take responsibility.

    The problem seems to me more to do with outsiders looking at a person in extreme distress and then deciding that THEY KNOW what is the root cause of the problem for their particular situation. (In other words ‘too simplistic’ or ‘inaccurate’ blaming) It is the looking at “symptoms to determine the cause” problem which we all know so well from traditional psychiatry. (A professional on this site have even gone so far as to equate ‘severity’ of ‘psychiatric disorders’ as a way of determining the extent and timing of trauma from parents- These are things someone can not possibly know, yet their opinion on this matter could carry a lot of weight due to their position )

    I, too, love Steve’s points about taking responsibility and I believe it applies to all parents and indeed to all people. As Steve says parenting is hard, kids are complex, but why some people and not other people “go mad when they encounter key life issues, …etc”(to quote Ron) is not known and could be due to a myriad of factors. One thing you say is that ” Parents have got to know that they are the universe for their children until a certain age.” I agree with you, but remember that it usually when people are young adults that they experience extreme distress, and at that time, children do not believe their parents are the universe but rather are trying to find their own reality in the world (so many influencing factors to consider at that point,,,,)

    I believe that approaches that do not make ‘assumptions’ (such as open dialogue) are the approaches that has the least potential for harm and the best chance of supporting the community of a person in extreme distress. In the context of a person’s own community, ‘real”individualized’ ‘problems can be met with (as Ron says) “humanistic, complex, and individually tailored solutions that might really fit particular people and families.” Of course there could be many situations when abuse or family dysfunction would mean that a person would not even choose their ‘original ‘family’ to be part of the community that supports them -but that is why individual solutions are necessary. And of course there could be huge or less huge changes that any or all ‘community members’ of the distressed person need to make to provide a healing community.

    The reason why this is issue is so important to me revolves around the issue of ‘forced treatment’ which I know you also feel strongly about. If families are made into ‘scapegoats’ by being blamed for things that might not apply to them , then it becomes harder for families to stand up against the treatment recommendations of traditional psychiatry that they feel (and their loved one feels) are harmful to their loved ones. If families are ‘blamed in an ‘inaccurate’ way, it is sometimes impossible, and is certainly made much more difficult to be advocates for their loved one. If we did not live in a world where ‘forced treatment’ was allowed, I might feel a little sad about some of the broad sweeping generalizations I have read that I do not believe apply to our family – but I certainly would not be taking the time to write about it while I am in the midst of such intensive family recovery.

    I hope nothing I have said has offended – I certainly do not want to get into a ‘war of words’ with you as I am sure you would win 🙂 I am just hoping you will (or do) understand how important ‘inaccurate’ blaming can be extremely damaging to families just as it is extremely damaging to individuals suffering from emotional distress.

  • Yes I agree with that also. I know we have had to adapt so much in our thinking and responding in order to rebuild our relationship with our loved one. (Mostly learning how to ‘be with’ rather than to try and ‘solve’ what is going on). It is an extremely humbling experience.

    However, when I have worried too much about whether or not my responses have been helpful or harmful in any certain circumstance, our therapist has really helped us keep things in perspective. Our therapist might say to us something like ‘don’t imagine you have that much power to effect how your loved one is processing, thinking and figuring things out for him/herself’.

  • Thank you Ron, As usual I find your writing extremely thoughtful and spot on.

    I love the Menken quote: “There is always an easy solution to every human problem — neat, plausible, and wrong.” It seems like such a human characteristic to want to not only reduce problems to simple solutions (categorize them, label them etc, ) but also to generalize a solution to be one that ‘fits’ everyone. I believe that this kind of reduction and over-generalization has caused great harm in traditional psychiatry, and have therefore felt very saddened at times when I have heard some professionals on this site fall into the same trap of oversimplification and over generalization when it comes to their theories or ideas about the cause of mental distress. I think professionals and anyone helping people in extreme distress cannot be too careful about expressing the limitations of how their own knowledge and experience (personal or observed) may or may not relate to others.

    What our family has searched for, in terms of people to guide the recovery of our family and our loved one, is for people like you who believe one should “search together for the humanistic, complex, and individually tailored solutions that might really fit particular people and families”. It is hard to see how any helper could go wrong if they approached people with compassion, humility and an open mind, and then really listening to what they are saying ( like open dialogue). This quote of yours particularly resonated with me in terms of what happens to families during extreme distress: “So, at all levels, even well-intentioned efforts can become part of a “storm” of madness, and while this storm often appears centered as a “disorder” in one person, really the confusion of many can be playing a part in the chaos.”

    I also want to say that we found Krista Mckinnon’s (?I hope I got the facilitator’s name correct) ‘Recovering our families’ course an extremely valuable course for helping families. I know other commenters have also spoke highly of this course in other posts.

    ( I haven’t read the comment thread for this post yet so my apologies if I am repeating things that have already been said.)

  • Rossa and Sandra,

    When I read this it reminds me that people have very different experiences with how medication effects someone’s state. (e.g. reinforcing Sandra’s position that we must all listen to each other 🙂 For us, we did not see any drastic improvement, but rather a slow creep up of functioning We saw this similar response to both the medicated and non medicated state. but the medicated state added more symptoms than we had seen before., and seem to put our loved one on a much more serious course.

    I think this is where the problems with DSM diagnosis really can hurt people. Even if you use the medical model definitions, it is unbelievable that people with such different symptoms and history fall under the same umbrella term. (Take ‘schizophrenia’ for example – how could all the different `subtypes (‘paranoid, delusional catatonic, ‘mixed’ etc, , early onset, late onset etc.) all be considered the same condition that is clearly defined from things like ‘PTSD`, trauma, bi polar, psychotic depression, borderline etc.)

  • “……accusing Whitaker of “cherry-picking.” I was left wondering, if he picked the cherries, can someone point me towards the branches and the tree?”
    I just have to say this is one of the best quotes I have read on MIA…where indeed are the branches and the trees?

    Thank you, as always, Sandra, for your very thoughtful and honest reflections.

    I completely agree that we need to listen to people’s fears and concerns about extreme states. As a family member who has tried (and is trying) to create a healing home, I believe I understand exactly what you are saying about the fear over what will happen to one’s loved one.

    Extreme states are incredibly scary to watch, but for us, this fear was confounded by a lack of real knowledge about extreme states, a lack of support , a very tenuous grip on hope, and mostly, by the ‘fear’ of our loved one being subjected to coercive treatment. (We had never seen the same kind of ‘terror’ state before our loved one was medicated so we always wonder if the intensity of extreme state was related to ‘supersensitivity’ or ‘withdrawal’ ). I do not like to go into very much specific detail, (it is not my story after all), but I will give one fairly benign example to explain what I mean: as painful and distressing as it was to listen to intense screaming, it was absolutely terrifying to know the neighbours might call the police and that our loved one would end up on an inpatient ward again.
    As time passed we learned more about extreme states both from our experiences, guidance from family therapy, and from the brave souls who post their stories here. We started to believe that the terror would eventually subside (and it has) . Our brilliant therapist needed to teach us that we did not need to fear our loved one, and indeed helped us realize that our loved one also needed to realize he was not a dangerous person. (Looking back I can see how the `fear’ of psychosis took on a life of its own, spiraling out of control and interfering with efforts to promote recovery). However, our main fear about how society responds to extreme states remains (e.g. worries about keeping one’s loved one safe, and helping our loved one go back out into the community without the worry of coercive treatment) . I wonder how often attempts at ‘alternative’ approaches fail because other families like ours, find that it is ‘almost’ impossible to provide an ‘alternate’ healing environment given the ‘narrative’ that exist in our society.

    Listening to each other is so important but listening is easier when you don’t live in fear. That is why I feel If we could separate ‘forced safety’ from ‘forced treatment’, it would result in people being able to listen to each other more.

    Thanks again, Sandra, for all you do.

  • Thank you for sharing your story.

    It is unbelievable what some psychiatrists will say to patients. I found it particularly upsetting that your diagnosis was not considered strong enough for you to participate in a research study, whereas at any other time – as you say- it seems impossible to get rid of a diagnosis

    I just wanted to say that when I read this site (and also M0nica Cassani’s Beyond Meds site), I see enormous hope for complete recovery. People seemed to be recovering from the most terrible states. You seem to me to already have so much that is well functioning (e.g. you are writing thoughtful blogs, acting as a support person to your mother in time of crisis, etc. etc.)

    I look forward to future blogs from you describing your continual recovery.

  • Thank you for this very insightful analogy.

    The image of someone rushing in with duct tape and chemical solutions in a short-sighted effort to repair damaged pages is very powerful. It makes me think about how much more time and effort is needed to try and gently peel off the effects of a shoddy repair, before real healing can happen.

    ‘Like with like’ is a very helpful way to think about how to ‘be’ with someone when trying to provide a healing environment.

  • Thank you for all the work you do!

    I know this is a bit off topic but I wondered what you thought about “transcranial direct current stimulation (tDCS)”.

    Is this the same kind of thing as ECT or is it a gentler procedure? It seems to be something coming up a lot now in new research and I wasn’t sure if it was an old wolf in new sheep’s clothing, or something less invasive.

  • Is it completely naive of me to hope that this could finally start to make enough people realize that having a system which allows forcing people to take antipsychotics is unethical.

    Will this “new” information feature at all in the argument against AOT ? It has been so bizarre to me to listen to or read otherwise ethical people discuss how ‘further research’ is needed to prove antipsychotic medication is NOT harmful (rather than the burden of proof being on whether the treatment is helpful!)

  • “To fully meet the standards of medical informed consent, the researchers suggest that clinicians and practitioners must “accurately communicate to patients the uncertainty of evidence regarding the long-term use of antipsychotics in treatment of psychosis.” ”

    …Yes thank you very much…and therefore HOW can it be either ETHICAL or LEGAL to have forced treatment with antipsychotic medication for any person.

    Informed CONSENT that is all we need…once that happens so, so many other problems associated with `psychiatry’ or ‘antipsychiatry’ will just evaporate…………………………….

    *

  • Thanks Sera -very interesting points and yes, it is so complicated.

    I had made a framework in my mind that `emotional health’ was opposite to ‘severe emotional distress’ , and that in emotional distress, ‘cognition’ could be hijacked in more or less degrees by terror. (e.g. You can’t access parts of your cognition due to emotional factors). To me this is how ’emotional health’ would be different from the ‘cognitive health’ of people suffering from certain neurological conditions or cognitive deficits.

    As my knowledge is ‘second hand’ (observation of a loved one) I am always very grateful for any input from people who have experienced these things first hand.

  • I am so grateful to you for writing this article. I have been upset by how negative the response to the BPS report has been at least so far, even on sites (e.g. oneboringoldman) where I would have expected a more favourable response. I am worried that these responses will serve to ‘bury’ the report. I agree so much with this statement:

    ” It should also be noted that the BPS report was written for a public trained to associated psychosis with horrors of various kinds. So there was really no need to spend a lot of time letting people know that psychosis could go badly. Instead, the report was aiming to increase awareness of how psychosis could possibly be met with understanding and reasonable hope.”

    My feeling is that the BPS report is an invaluable resource for clients and families both to provide realistic hope, and to use as a document to support decisions made that are different then what is considered to be the standard ‘best practice’ for ‘treating psychosis’ within the medical model.

    On a more personal level I found this comment very helpful:

    “But from a psychiatric point of view, this whole process could be seen as “loosening of associations” or cognitive “dysfunction” ……..There were times for example I watched movies and I was sure there was no plot, I became sure that the filmmakers were experimenting with new ways of seeing things that didn’t involve plot. Years later, I watched some of the same movies, and was surprised to find that there was, indeed, an obvious plot, which I had completely missed!,…….
    I find there is so little information out there that helps explain the cognitive difficulties some people with psychosis experience that can interfere with even basic daily living skills, let alone work or school.

  • Thank you so much both for this article and your previous article on “Slow Psychiatry’.

    As our family believes that the course of our loved one’s illness was made much, much worse by the introduction of psych meds, I feel a small kernel of hope when when I hear psychiatrists such as yourself point out that there are big ‘assumptions’ that underlie what is considered by other psychiatrists to be ‘best practice’ for the treatment of psychosis.

    I am particularly grateful for the following comments:
    “In RAISE, antipsychotic drugs are considered essential and the recommendation is that they are started early and continued indefinitely, albeit at the lower doses than are typically used. I have written elsewhere why I think this is problematic.”

    “In the U.S., there is currently much attention given to reform of the mental health care system. One area of focus has to do with early intervention with young people who are experiencing psychosis. RAISE is held up as a model. The outcomes from this study are not good enough to support the notion that we have all of the answers.”

  • Margaret Altman,

    I believe these issues are far too serious to be talking about whether or not comments are in ‘good’ or ‘bad’ ‘taste.’

    If you think my comments are INACCURATE or if you think I have read the article wrong then please speak to the ISSUES and in particular to the quotes I highlighted that seem to me to be so problematic. These comments seem to me to say (intentionally or unintentionally) that all psychotic persons have had severe abuse or neglect FROM THEIR MOTHER(‘ maternal damage” ) as either an infant or toddler (or whatever Dr. B means by ‘extremely early’) . This is an incredible statement and an incredible assumption.

  • Dr. Berezin,
    You say: “ This does not mean some incorrect idea that I’m saying the real hidden cause is bad mothering.”
    I want to believe you mean this, but if so, I think you need to rewrite or retract this post. (Or at least explain to me how I misinterpreted the following quotes). There are things you write that I am unable to ‘read’ in any way, except that you are saying bad mothering is underlying ALL psychotic conditons.
    For example you say the following:
    “ALL psychiatric conditions are the result of trauma – deprivation and abuse – on our emerging personalities….”
    And then:
    I have broken down the types of human suffering into three groups. The FIRST is the constellation of temperaments in the context of MODERATELY PROBLEMATIC MOTHERS AND FATHERS; The SECOND is the constellation of temperaments with SEVERE MATERNAL DAMAGE; and the THIRD is about PSYCHOTIC character worlds.
    and then you say:
    FINALLY , we have the PSYCHOTIC CHARACTER WORLDS where there is a fragmentation of the intactness of the self persona and a rupture of the cohesion of the play itself. This DERIVES FROM a damaged Authentic Being, DUE OT SOME COMBINATION OF EXTREMELY EARLY MATERNAL DAMAGE and……….”

    In other words it seems to me you are saying that all people who experience psychosis suffer from early maternal damage and you imply this damage must have been severe.

    My issue is not about ‘blaming’ or not blaming’. It is also not that I don’t recognize that people in power (such as psychiatrists, teachers, bosses and most definitely primary caregivers such as mothers and fathers who have enormous influence,) are able to inflict greater harm (or help) on people (such as clients, children etc.) than those who are not in positions of power. I believe that extreme maternal abuse or neglect could indeed be the cause of psychosis for some people. I also believe that ‘relationship is key’ in regards to human suffering and we all can have great influence both positively and negatively on those around us. I also believe that most, in not all, parents are far from perfect, have ’baggage’ and if their child has psychosis, is it even more critical than ever for those particular parents to try and sort out relationships in order to promote a ‘healing home’ environment. That is why I have found approaches such as open dialogue, compassionate based therapy, Ron Unger’s cognitive therapy for psychosis and more recently a brilliant book entitled “Recovery Sanity” by Edward Podvell, so helpful in guiding the way we support our loved one.
    No, once again, I must stress that I find this post of yours very dangerous because you are a person in power who, (at least judging from the quotes above ), does seem to be ‘imposing a theory’ that could lead to very damaging results in the hands of the ‘wrong therapist’, or in the hands of the ‘psychiatric system’ (you know -that system that incarcerates our children). You state your theory as fact and imply it applies to all cases. ( e.g. You do not say ‘you think ‘ or ‘you wonder’ or ‘in some cases’or ‘in my experience with x number of clients this percentages of them’…..etc.)

    In your past posts I found many aspects of your theory of the psychotherapy of character interesting and I even bought your book. But when I read this post, I felt I finally understood what happened about 40 or so years ago that drove so many families to organizations like NAMI, and why so many families were so easily betrayed into believing ‘biological reductionist’ theories of illness. Families must have been so afraid 0f the kind of ‘emotional reductionist’ theories that abounded at the time. In their heart of hearts they knew these theories simply did not give the complete picture, and that these theories could do so much damage in the wrong therapist’s hands; and so they ‘ran’ .

  • Thank you, Diana, for so clearly articulating my grave concerns about this article. I was horrified when I read this article, and needed to take a couple of days to try and figure out why.
    It is not that I am unfamiliar with incomplete and simplistic ‘assumptions’ made by psychiatrists and other people in the mental health system. Our family suffered very thoroughly from those type of assumptions when my loved one went through the mental health system. ( Psychiatrists in hospitals who believe in a predominately ‘biological’ model peppered with what could only be called ‘pseudo-psychology’; are as quick as Dr. B is to decide that the family is the major part of the problem; IF and WHEN the family dares to support their loved one in arguing against the drugs or other aspects of their approach).

    No, my grave concern about this article is the extreme arrogance of Dr. B that allows him to present his ‘theory’ as fact. He has already decided on the problem and solution before the client walks into `his office’. He has reduced all the possible combinations of personality, temperament, physical health and make up, life experience and environmental factors; that could lead people to emotional distress, into a neat 3 tier package which finds different levels of `maternal abuse and deprivation’ as the cause. (Of course maternal abuse and deprivation would cause emotional distress, but this doesn’t mean that all people with emotional distress suffered in this way. )

    When people with lived experience try to tell him his ‘theory ‘ doesn’t fit their situation, he tells them they are wrong: For example, note his answer above to Mad in Canada: He says “I certainly agree that trauma from fathers, siblings, classmates, teachers etc. is major. However, the major player in the earliest formation of our character is mother, whether you like it or not.” (By this I assume he is saying that whatever the distress the person thinks they are suffering from, it is actually a previous experience with their mother that is the real cause).

    Although I am sure it is not his intention to harm, I believe that type of arrogance can be very dangerous both to suffering individuals and indeed to people who want to create a system free of psychiatric domination. I would suggest that Dr, B consider seriously the important role of ‘humility’ and of ‘listening to people with lived experience’, which is central to the reform ideas of psychiatrists such as Sandy Steingard and Pat Bracken. I also suggest he listens to the clear voice of survivors such as Julie Greene who said this in a previous comment above:

    ” Mothers of that population ran the gamut, from more flawed to less flawed and in the middle. Perhaps “babying” and “overprotectiveness” ran slightly higher than the norm, but by all means, “bad mother” was simply not a universal truth. Even if you say it happened in infancy.”

  • …….and strategically – if I were a psychiatrist trying to get other psychiatrists /mental health people on board to provide care that did not include ‘coercive TREATMENT” I would simply and steadfastly stick to the line that ‘we do not have the evidence -base to justify forced treatment (- research has not shown better long term outcomes for medicated people dx with sz and bipolar, research has not shown better than placebo outcomes for people with depression etc. ) – whatever we believe or see in our clinical practice, we simply do not have the evidence base that proves are results are better than alternative approaches, we just do not have the evidence base to support the use of force in treatment.” ..”Instead of continuing with force, let’s looka at our practises and work towards making pscyhiatry something more people WANT to access because they find it helpful “

  • Thanks for making these very important points. It is very true that there are people who felt helped by medication, yet still found their experience with the mental health system very traumatic. You are so right that this is not an issue of those who take medication against those who don’t. I also do not believe that is Alice’s intention, but I can imagine how this kind of a message could be so abused by ‘non- critical psychiatrists’

  • The lack of alternatives is the most pressing problem that needs to be lobbied as one is arguing against forced treatment. Because of the dominance of the psychiatry model, alternative programs and support have not been developed or funded properly. (They are certainly NOT more expensive than psych wards) .

    They are many initiatives throughout the world that people have talked about on this site, and written about but I will leave it to others who will be able to explain them better than me.

    In New York I thought there was Parachute NY? I imagine if initiatives like parachute NY had more support and funding then I imagine their type of services could grow to meet even more needs (e.g. for people who needed more of a ‘sanctuary house’ to go to rather than a parachute service for example).

    One very important point I want to stress. Forced hospitalization does NOT and SHOULD not equal forced treatment. Maybe that is the most practical way to start. Separating the need for ‘forced safety’ from ‘forced treatment’. Also when ‘forced safety’ is deemed necessary , emphazing how the person’s feeling of safety is crucial to their recovery If these two things were emphasized, then energies would be directed towards trying to first locate the person’s support people, developing more humane ways to allow a person to work through their extreme states in the hospital, allowing their loved ones to stay with them in the hospital (like loves ones stay with patients in every other wards on the hospital), offering some medication for sleep (rather than psych meds ) and then once the person is in a calmer state, providing ACCURATE and HONEST information about drug choices and then allowing the person to stav or GO to another healing environment of their choice (possibly home or eventually to sanctuary type dwellings as services grow).

    Again I imagine that a group of critical psychiatrists would have the most power in terms of helping funding be redirected to `healing homes’, parachute programs and other types of sanctuaries.
    Y
    One has to start somewhere,,,,,please please really consider taking on this fight. You could do an enormous amount of good.

  • …..pressed post too soon sorry, so to continue……….if you really want to help – imagine the power of that kind of a film …you could interview people like Pat Bracken who talks about a new type of psychiatry, talk about how important it is to change psychiatry (as Whitaker says) from being a profession that has the power and control over ‘mental health’ and instead become ONE of the disciplines and services that people could either access or not depending on whether they find it helpful or life saving. Once the power differential has been changed, that is when you will naturally begin to see more communication across, as you put it, the ‘wide divide’. I know people make lots of comparisons to slavery. I don’t usually make these kind of comparisons as I feel it often makes people defensive and I don’t feel I really have the expertise to comment on it anyways , but it does feel to me that until coercive treatment (particularly in the absence of evidence based treatment) is addressed, your efforts really could be compared to the ‘good slave owner’ trying to improve the living conditions of the slaves and wondering why slaves are not more appreciative of your efforts. Someone once wrote an article on MIA entitled..it’s all about the coercion stupid … (I am not calliing you stupid but that title has stuck in my mind as really I believe it IS ALL about the coercion.

  • HI Alice,

    I feel very strongly that the way psychiatrists could make the biggest, most profound and helpful change is to lobby against coercive treatment [educating the public that forced treatment is different than forced safety, speaking out clearly (it doesnt have to be agressively) about the lack of evidence -based research to justify forced treatment, educating the public and supporting the development of ‘sancturary’ type settings (even within hospitals) that don’t invoive forced medication,forced treatment, forced isolation and separation from loved ones etc. , speaking loudly that your practice doesnt involve such things and explain why, publishing the way patients should be educated about drugs (like the way you said to Sera you talk to your patients) , joining with other psychaitrists to make a strong, dedicated internal stand against forced treatment that could also be done in your `softening’ way.

    There are psychiatrists within the system who have written endlessly about the corruption in research and have made some changes there (e.g.around study 329 etc. in one boring old man, etc.) We need a similar type of persistent attack against coersive treatment.

    I find it strange (or perhaps this is the ‘cognitive dissonance’ that Robert Whittaker speaks of’,) that even many of the psychiatrists who speak out against all the fraud in research and feel responsible as a psychiatrist to (as one psychiatrist put it) ‘clean up psychiatry’s side of the street’ (even though there were not involved in the fraud); these same psychiatrists can take a completely different stance when issues of coercive treatment comes up. For example, they say, like you, ‘I don’t do it so I feel blamed when people bring it up’ ; rather than say ‘it happens regularly in psychiatry so what can we do to clean up this part of the psychiatry street. There is a film that could be done from the unique power position of the critical psychiatrist .

  • Thank you Katie so much for this reply ….you don’t know how this resonates with the situation we had with our loved one….and in addition to the chaotic emergency room etc. …it is unbelievable that standard of care actually forces separating the terrified person from the people whom he loves and trusts……..he still was able to trust us at that time… I will never get over the the horror of leaving him at the time when he needed us the ,most…we didnt know we would have to leave and by the time we realized it was too late……

  • Margiealtman

    I am not sure you will find my response to your comment but if you do I have to tell to you I am very saddened by your reply. Not only does your comment not speak to my point that what works for some does not work for others and how starting medication can precede worsening psychosis, (which makes me feel you discount my experience), but it also in no way justifies you saying that people ‘indulge’ psychosis.

  • Margiealtman
    I copied what you posted as I don’t know how separate my response will be from your reply. You write

    ” Do you agree that there are various intensities of extreme states? I have had my own experience (in college) and was non-functional for several months, kept in my room at home, had to drop out of school. It gradually resolved on its own and at that time my parents did not want me to take the meds because they were the primitive Thorazine and Stelazine. So I would never want to undergo that again and would take some meds temporarily, but my point is that my state was really close to being totally disabled and I think that the next rung in the ladder would have been close to what I see in the ER. this is not what other writers are describing as far as I can see.”

    The grave concern I have about your comment above is that it seems to make the assumption that ‘newer’ meds cannot cause the severe problems of the older meds, and that taking newer meds will take someone out of a severe, disabling form of psychosis. Perhaps that is true for `some,’ but it certainly not true for `others’, and if those ‘others’ are not brought out of an extreme state by medication, they have instead landed on a devastating track ( of higher doses, different meds, or if stopping the medications – all the extra problems of trying to withdraw, supersensitivity, obesity and health concerns, and on and on). Not to mention those people who only went into a more severe, disabling psychosis AFTER medications were introduced and or changed around in their sensitive brains! Your parent’s advice to wait to see if you were able to come out of a severe disabling psychosis on your own could well have saved you from this track and could still save others from a similar track with current medications.

    Your comments about people (or families) ‘indulging’ psychosis by not taking a ‘medication route for severe, disabling psychosis is so distressing to me. I think most of us on this site understand that conventional treatment for psychosis with medication is not evidenced based in terms of long term recover of severe disabling psychosis! We are not ‘indulging’ our loved ones but desperately trying to prevent our loved ones from suffering a life long disability which we know happens much more frequently in societies where medication is the first line of treatment.

  • Thanks you for highlighting this issue.

    We saw the emergence of ‘never before seen’ agressive behaviours in our loved one about 3 months after starting an SSRI, these behaviours became even more intensified for at least a couple of months after the antidepressant was fully stopped (after a slow taper), then slowly decreased over a year. We now never see those aggressive behaviours anymore (even though our loved is far from recovered). We believe in our case that the aggressive behaviours were related to the SSRI.

  • Very well said Steve.

    …..Imagine a world where pscyhiatrists used their knowledge of psych drugs to educate, protect and prevent clients from believing erroneous myths that have been circulated about the effectiveness of psych drugs. Imagine psychiatrists sitting down with their patient and talking through all the issues and problems with the drugs – I bet many people would decide to wait and try other methods first……..

  • What about the ‘trauma’ that a very sensitive soul can feel when hearing about atrocities committed on others. I have heard of stories of people going into psychosis after being involved in humanitarian work and then coming home to see how little people care about those far away. I know my loved one used to talk about how ‘symptoms’ first appeared after a beloved teacher graphically described how children were treated in certain work environments. We live in a very cruel world and I believe sensitive developing souls can suffer very deeply when their faith in humanity is shattered -even if trauma hasn’t happened directly to their own person.

  • You are right madmom, we should be considering all people not just children and adolescents. I am so grateful for all the research and work that is being done in the area of neuroplasticity of the brain.

    Your daughter is one of the young people I I continue to keep in my thoughts and hopes for a successful recovery. For me I am starting to believe there is more strength and resilence inside my loved one then I can actually see in terms of outside behaviour….

  • “There needs to be a ban on these medications in children, except perhaps under extreme circumstances within psychiatric hospital settings.”

    The ban needs to include all children and adolescents – ESPECIALLY in psychiatric hospitial settings. If something as serious and potentially able to set off a whole cycle of harm (e.g horrendous side effects, super sensitivity etc.) TIME needs to be taken to discover the whole history, to learn about the whole child, to try other methods first – time is not what anyone has in a psychiatric hospital setting. Once these serious medications are started, the child or adolescent is sent down an entirely different road.

  • Thanks you so much for this review and for emphasizing that antipsychotic use is questioned even for those with psychosis. I find that even many people who are so upset about the overuse of antipscychotic medication for children and adolescents, still fail to understand the potential horror if these medications do indeed give the severely ill less of a chance of recovery.

  • There is a great program (I think it is available on netflix) called `Alive Inside’ that speaks to the importance of music for facilitating memories in persons with dementia. It follows a retired social worker who volunteers his time getting to know people in care homes and figuring out the music that was important to them in their lifetime. He put ‘their’ music on ipods and you see the dramatic difference it makes to the life of these residents. The key is that it is the music that was important to them in their lifetime. Oliver Sacks speaks on the program.

  • Robert Whitaker,
    I am not particularly religious, but so many times when I read what you write, the phrase “God bless you!” jumps into my mind. Thank you for giving what I consider to be a hefty financial contribution for creating Mad in America. And thank you for devoting so much of your time for very little financial return.

    John Smith,
    if you are still on this thread, I just wanted to let you know that I did notice your efforts in trying to stay respectful when asking your question. I think it is ideal when different ideas and opinions can be hashed out in a respectful way and I hope you continue to comment and questions things in the future, I think people who comment respectfully with different opinions can only make our site stronger, Indeed it has been through great back and forth threads arguing over ‘issues’ that has made me realize how sound Robert Whitaker’s arguments are.

    I just wanted to add, though, that many people who comment here have suffered so greatly and have risen above great odds. I know for myself, I have often found myself hoping, ( on other sites where I comment), that people can see the ‘pain behind the anger’ in some of the things I say. Many people like me also feel that we owe so much to Mr. Whitaker so I am not surprised to see people jump to his defense!

  • I am so glad for your happy ending. I have enjoyed reading your comments and now am enjoying reading your first (?) post.

    I think you are right on about antipsychotics frequently being used to control even ‘mild’ behaviour difficulties in people with dementia. I had a similar experience with antipsychotic medications being offered to a parent (They had no idea how terrifying that sounded to me!).

    I have heard of some efforts for change in this area now – apparently there is some ‘rating’ system of care homes where low or no use of antipsychotic medication gives a home a higher rating (I am sorry i cant remember the details now) Also there is some move towards a type of ‘gentle persuasion’ training which is supposed to teach staff better to understand how a person with dementia might be thinking (e.g. Realizing that it is normal for someone to thrash out if ‘strangers’ are ripping his clothes off, which is what it would feel like to the person with dementia when ‘unknown’ nurses try to bathe him…so they teach them to do alternate things (sponge baths) instead rather than try to force people into doing things they don’t want to do.

  • Wonderful article – thank you. I am heartened to hear the above opinion that antipsychotic drugs should be banned for children and adolescents, including for mood and psychosis.

    For us fairly mild symptoms became much worse after medication and we will never know if the worsening symptoms would have been there without the medication (we suspect not as we were seeing ;spontaneous recovery’ before the meds. Also the side effects were truly terrifying and largely ignored.

  • Thanks for telling Duc Mihn Pham ‘s story.

    I think the most tragic part for me was that he had lived for so long in such difficult circumstances without incidences of violence, and then how soon after medication was introduced that a violent incident happened. I just imagine how different it might have bee if we could have had support enveloping him around his own ‘home’ – at the community center.

  • wflewis,

    I hope you do go into psychiatry and become a ‘critical’ ‘psychiatrist. A very wise psychiatrist who has great empathy once told me that she was able to engage in all sorts of discourse with users or survivors of psychiatry because she could see the ‘pain’ behind the anger, and realized how much they had suffered. Another critical psychiatrist – Pat Bracken – writes that the most exciting thing to happen to psychiatry is the rise of the user/survivor movement and he feels collaborating with users/survivors is the way forward for psychiatry. I believe the ONLY reason why psychiatrist are considered by some to be ‘evil’ is simply because people are so afraid of ‘psychiatric power’ (See Pat Bracken’s 2012 article on ‘Psychiatric power -a personal view).

  • Let me start by saying thank you for the work you do for people. I have read your articles and believe your advocacy must have provided great hope and comfort for people who are truly disenfranchised.

    However, what you are saying is exactly my point – our current system is not set up to allow most people to have a viable option to psychotropic medication. Although I admire so much people who try to provide good care by working in the trenches of the system, we still have to fight to create a system for all that does not further harm people by giving medications without inform consent , or because there are not other viable options (and this type of system would certainly not need to be more expensive than our current medical system).

    There are survivors who post here who strongly say they would prefer prison (if they did not need to be medicated) than being forced to take medication because of the lasting damage they feel they have suffered from these medications. I am so adamant about this because of seeing my loved suffer severe damage from medication. The way our system is set up did not allow us the opportunity to access a ‘preferred environment’. Our only option to this was to do it ourselves and it was extremely difficult. Yes our loved one and us were lucky that we at least had that option, but I also want people in prison and homeless people to have the right to have options free of psychotropic medications in case they too are of the group to suffer worsening symptoms and lasting damage from the drugs. I wonder if part of this solution is using other drugs rather than antipsychotics during extreme states as some of the psychiatrists that post here suggest, and of course the other solution is diverting money from hospitals to sanctuaries in terms of extreme distress.

    I wonder if our difference is because you are speaking ‘practically’ in terms of the system we have now; and I am saying that this is a crucial issue to fight to change. Once my own family is back in tact, that is certainly the area where I will be devoting my energies.

  • There are definitely alternatives to medication for people in extreme states, it is just not how our current system is set up. People helped people through extreme states for centuries before medication, and modern day ‘sanctuaries’ such as Soteria house etc. are more recent examples. There is also medications to help someone calm down and sleep while they are in an extreme state, which is different then putting people on more powerful psychotropic medications. The reason why I write this is because the introduction of powerful medications for some people starts off a vicious cycle which makes it difficult for them not to continue on the medications, and can lead to much worsening symptoms and withdrawal effects. We had to help our love one through an extreme state without outside help, and yes, warm and loving interactions, setting up a safe environment, 24/7 vigilance worked – it wasn’t easy but it worked in the end, and even the `warm and loving embraces’ happened although, I grant you, that didn’t happen until much. much later!!!

  • Hi Lord of the Fries,

    I agree with much of what you say but wanted to add a couple of things. I think the reasons why people are so angry at` psychiatry’ is more to do with the ‘lack of informed choice’ and ‘psychiatric power’. A psychiatrist from Ireland, Pat Bracken writes some very good articles about this.

    You should be able to choose medication and it should be available to you for the life changing results you describe. However, I really take issue with you suggesting Tabitha was to blame for what happened to her daughter. Tabitha and her husband and daughter deserved to be informed properly about the effects of medication, they should have been told about the lack of an ‘ ‘evidence base’ for the medical treatment she received, they should have been told about the different opinions in the field, and the many alternative approaches that people recommend. If they had been properly informed (particularly about the dangers of prozac to teenagers) I believe they would have made different choices. (And as Tabitha says the doctors too seem to be also uninformed which speaks to the ‘institutional corruption Whitaker writes about’) The problem is that in our society psychiatrists dominate the treatment of emotional distress, even though so many people report that their conditions are worse after treatment. Once psychiatry is no longer considered to be the sole ‘experts’ in the field, and once they no longer dominate the treatment of mental health, then psychiatrist could have things to offer to a select number to people. If they were ‘invited guests’ to someone’s treatment program (as it sounds like they were in your case) then that would be fine.

  • Sascha, Thanks for sharing your story. What you write reminds me again that really all we need is true informed consent for treatment.

    The world IS complicated and people have such different experiences…..what we need is honest information and then the ability to make a choice,…….once people have the opportunity to make informed choices, we would have people both on and off medication who were receiving good care , and then we would finally have the subjects to be able to do further research that compares people with and without medication. These kinds of studies could really help fine tune where and when medications may be helpful.

  • Thank you Joanna for your article and all you do.

    I have a couple of questions which always confuse me when using medication during the acute stages of psychosis or mania is discussed.

    Do you think antipsychotic medication is sometimes necessary during a severe manic episode because the person is so internally distressed, or because the person does not have the option of being in a ‘sanctuary type’ environment where the person could be kept safe during the episode?

    Also in studies such as Wunderink, people talk about using anti-psychotic medication during the acute stage of a psychotic episode and then tapering the medication off. My questions are firstly how can that ever really work if relapses typically follow -do those people go back on medication during the relapse and then go off again and again??? Wouldnt that just be a vicious cycle? And my other question is when is the ‘acute’ stage supposed to be over given that real recovery in these studies seems to take years and years……does the ‘acute’ stage refer to more florid positive symptoms rather than devastating negative symptoms? What about people who seem to be locked in a state of no agency? I Hope my second questions are not too off topic.

  • ……I just wanted to clarify that there is a lot of ‘moral outrage’ on the 1 boring old man site about all sorts of psychiatric issues which I have really appreciated reading – it is only the topic of the current treatment of psychosis and the lack of evidence-based treatment and informed consent where I do not see this ‘moral outrage’

  • “But I suggest that we all need to monitor our own tendency for self-justification. Open, critical – respectful – discourse is of utmost importance because we need to rely on others to help us examine our own blind spots.”

    I agree so much with this statement and the spirit of your post. I admire how open and honest you are about your journey and agree that uncertainty makes intervention so incredibly tricky, and that mistakes are made by most of us (certainly by me) when we try to help people in distress. However, I do not think the type of discourse you speak of will or even can ever happen until ‘informed consent’ is prevalent in the field of psychiatry .

    I find the discussion of the treatment of psychosis to be a very present day example of cognitive dissonance among even many ethical psychiatrists. Here I am thinking of, among other things, the ‘conversations’ I have read on ‘1 boring old man’ about whether long term anti-psychotics are harmful or not. What seems to me to be missing in those types of conversations, is the “moral outrage” which Ted talks about in a previous comment. The idea that since there is even this ‘question’ as to whether or not these drugs are harmful, the fact that the current paradigm of care that does not fully inform patients and families, and does not provide viable options to medication, is very unethical. Although I am not suggesting that ethical psychiatrists created the current paradigm of care, I do believe that they are the group that have the most power to speak out against the system, and to lobby for a paradigm that includes viable alternatives of care for vulnerable people in extreme distress (e.g sanctuary type settings for those who choose that).

    I guess what I am saying, and this is definitely NOT directed at all at you, Sandra because I think you have suffered a lot on behalf of your clients, nor is it directed at any particular psychiatrist on MIA; but I do understand on an emotional level what Ted means when he writes ” There seems to be no sense of moral outrage among the psychiatrists who write for MIA.” It can be very, very hard for me to engage in discussions with any people who don’t believe that what happened to my loved one was a moral outrage that should have been prevented -( and my loved one received what was considered to be ‘top notch’ , current care (low dosages etc,)]

    Imagine the difference of the history of psychiatry if all those earlier treatments were only allowed to be given to adults with informed consent,. Also imagine the field of psychiatry today if informed consent was prevalent – I believe there would no longer be an ‘anti -psychiatry’ movement; and then psychiatrists could join other treatment providers in open, critical and respectful discourse about what their different background and experience and knowledge had to offer to particular clients.

  • “Mozelle was one of Soteria-Alaska’s greatest successes, having been psychiatrized and drugged from her early teen years, and arriving shortly after she turned 18 with extreme “psychiatric symptoms.” Over the time she was there, she was able to completely turn her life around and was in the process of becoming a volunteer and was on track to become a staff member.”

    Is Mozelle’s story of success written somewhere that could be read by others? ( I don’t mean anything to do with the murder – I mean her psychiatric survival story. ) I am always looking for stories about young teens with extreme symptoms who then recover, and the details of people’s experiences can sometimes resonate with the story of my loved one, which provides us with great hope.

    It sounds that Mozelle’s story of success could be both a lasting legacy for her and a source of inspiration for others – if there is such a story I would be so grateful to be able to read it.

  • ” I think psychosis can arise out of attempts to cope with intense anxiety”

    I couldn’t agree with this more. This is why it is so tragic how persons are treated in the initial stages of distress prior to falling more deeply into psychosis. If only we had a system that enveloped people as they began to experience intense anxiety in a loving sanctuary type environment, supporting their loved ones to be with them rather than separating them, supporting the inclusion of the type of lifestyle factors considered supportive (nutrition, exercise, medication, etc.). It breaks my heart as it wouldn’t cost more money than current psychiatric hospitals ….just a change in the understanding of humanity and human emotions.

  • As a family member I am finding Ron’s online course for CBT for psychosis enormously helpful. The slides are brilliant – one can just scroll through slides to get a snapshot or reminder of a part of the course. The explanation of ‘dialogue’ , and the graphs that explain the difficulties when good internal dialogue is interrupted helped me understand my loved one’s distress so much better. Also the emphasis on hope and trust in relationship is helping me remember the importance of infusing our daily life with a more hopeful and calm context, and to find comfort in the fact that even though change is so painstakingly slow, seeing our loved ones trust in us returning is actually steps forward, We found the concepts outlined in Ron’sCBT for psychosis course, alongside the ideas of compassionate focused therapy, extremely helpful in building our confidence in how to ‘be’ with our loved one.

  • I have just read Jill Littrell’s post on the mind -body connection and had an ‘aha’ moment as to how nutrition and relationships (and of course other lifestyle factors ) could be so intertwined as precipitating factors in someone’s extreme distress. I had often thought of persons who experiencing ‘breakdowns’ as having a more susceptible nervous system (hence the reason why ‘trauma’ for one person may not seem like a huge ‘trauma’ to others). The ideas of this ‘inflammation’ factor makes so much sense in so many ways such as how many people speak even in conservative psychiatry talking about the importance of reducing stress, and how reducing stress can help prevent ‘relapses’. It also makes sense that different types of inflamation (resulting from poor diet , missing certain nutrients, relationship issues, trauma etc,etc, ) could take the primary role in different people. Also it makes sense that providing support in other areas (say nutrition) could result in the overall decrease of ‘inflammation’ in someone who say primary issues are say ‘more relationship driven.’ This would also ties in with how taking ‘fish oil’ is now seen as a preventive measure for pscyhosis. Sorry if I am stating the obvious or mixing up any information, but it is just since reading your article and then Jill’s that this idea came to me as bigger picture.

    Would this ‘inflammation -stress connection be similar to what you are talking about with micronutients?

  • Well said madmom.

    I think it is really important to recognize that psychosis seems to be the mind/brain’s ultimate response to trauma, but that ‘trauma’ seems to come from many sources -some biological, some a result of physical traumas, toxins in the environment, diet deficiencies or gut issues etc,; as well as many emotional traumas including bullying, hard family events, child abuse etc, etc, and there could be many more causes of which we are not yet aware. The truth is there is still so little that we understand about it. Add to this that people come with different temperaments, different resilience, and possibly different ‘ways’ that nervous systems respond to trauma. I remember one MIA author made the analogy that for some people the trauma does not have to be big- just like some people break their ankle from stepping off the curb.

    I leave open the `possibility’ that ‘perfect’ parenting combined with supportive environments and knowledge of emotional risk factors, might be able to prevent severe breakdowns in many people. – I certainly look back and wish I had done some things quite differently with my loved one and I wonder how big of a difference these changes would have made. However, I believe all us ‘average’,’pretty good’ or even ‘very good ‘ parents are ‘at risk’ of having this devastating experience with their loved one, happen to them.

    I also think that there are many reason why many parents have gotten ‘under the thumb of psychiatry’; reasons that tie in with being the victims of institutional corruption. And like madmom, I believe that most parents are capable of; and indeed will, make ”great shifts in their thinking for the benefit of their children’ once institutional corruption is further exposed.

  • Someone Else,

    I notice you make a statement similar to the one you make here over and over and over and over again whenever this topic comes up, and I understand why and I admire your persistence.

    As a family member of someone’s whose symptoms worsened after medication was introduced, I also just do not understand how drug treatment can be involuntary when there are not long term studies to back up its efficacy. How can ‘experimental’ or ‘uncertain’ treatment be forced? I believe that there are many, many different reasons for psychosis, and like you , I believe in some cases, the medications can make ‘brief psychotic episodes’ or other ‘breakdowns’ morph into a chronic psychotic illness for some? many? susceptible people. I believe in some cases for some people medications change people from being ill to being severely ill.

    Because of this, I think we should narrow the focus of our objections to try to require that `treatments such as drugs and ECT that can cause grave harm’, can only be given under conditions of full informed consent. We should focus on the research as that is what would be mostly listened to. If there are incapacity issues for a very severely ill person, I believe most people’s loved ones would not force drug or ECT if they were fully informed of the research, and if their loved one was somewhere safe. This way ‘time’ would solve problems for some people as people figure out what to do -e.g for brief psychotic episodes. People could write up contracts for future directives to their loved ones……
    ……it comes down to sanctuaries, sanctuaries, sanctuaries…..at this point I do not care if they are in or out of hospitals as long as harmful treatments are not forced.

    I know this would not be considered the perfect answer for many, but at least it would greatly reduce long lasting harm, and could

  • I agree with this whole-heartedly. I feel Elyn Saks experience should be completely validated, and this in no way discredits non med approaches and successes. Indeed it reminds me of the idea of ‘subsets’ of psychosis that Whitaker and others talk about. It is also why I wonder if Elyn Sacs might one day adapt some of the things she says in order to support a more ‘informed choice’ type of position that takes into account the research that show non-medical successes, and particularly to protect the people whose condition worsens with medication.

  • Alex I just watched the u tube you pvcosted. Although she talks many times about the importance of early treatment, I do not know why she would not see open dialogue approaches as valid given the research…..although she talks about how important pharmacology was to her recovery, I do not see why she wouldn’t consider those whose condition worsened after medication etc. She speaks loudly about the importance of social structures and support and therapy etc,,,,,,,,,,,,, and there is more and more awareness of the ‘uncertainty’ of treatment approach and research in other areas such as nutrition?? However I do noticed this was a recent video in 2013.

  • I did think so -but I am reading other’s comments further down on this post who have read her book and I guess I really don’t know. I must confess I have only seen her ted talk and some writings about her opinions of the ethics of psychiatric treatment. I guess I thought since she did write about the ethics of psychiatry she would see this as her area – and if there was new information that shed a different light on long term drug treatment – she seems like the kind of ethical person who would want the information she has disseminated to be as accurate as possible. She seems to me someone who would be very concerned that the individual rights of patients were not being in any way violated. What do you think?

  • Thank you so much for your courage and the response you got from other people is truly inspiring.

    I often think that Elyn Saks could be a great support to the reformer movement because she is as Alex says a ‘ Very nice person, and extremely courageous, honest, transparent, and obviously hard-working’ I think her idea of coercive treatment is based on the idea that ‘HER former self would have wanted to be given drugs as, in her case, she was restored to her former self’ . However if she studied the state of the research now -I think she wrote her book a number of years ago – and saw the research about how many more people recovered without medication, how many people remain on medication despite the fact that they remain very ill, and how psychiatrists do not know which people might have the pattern of recovery that she had – then I am sure she would be not be supportive of the current state of coercive medication.

    I have often wondered if someone very versed in the literature and the issues – well I guess I have wondered if Robert Whitaker and Sandra Steingard would ever approach her to see if she would study the current state of the field and revisit some of her ideas in light of the current research ………….. Once coersion is gone and uncertainty is recognized; particularly by the psychiatric community who currently has the dominant voice, .then the research, the problem solving , the resources and structure will certainly start to snowball on, as Julia says ‘how we help those people who don’t want or don’t respond to medications? ‘

  • I think you have hit upon the key – if each university had a well informed academic leading a protest simultaneously…….Given that this research is counter to ‘best practice’ even for current mainstream psychiatry-e.g. having a requirement of taking antipsychotics 2 years after a first episode of psychosis which may or may not turn into a long term illness would certainly be against best practice- I think loud protests would certainly have a chance at winning. Surely caring and responsible psychiatrists would have to see this research as a conflict of interest and against best client care.

  • I think this is one of the most terrifying things that I have read.

    Will you you try to post this on other sites as well – I wonder if ‘one boring old man’ would post your post – brief psychotic episodes are very well recognized at major hospitals – that alone should make psychiatrists who do care stop short in their tracks as well when they hear about this study.

    Thank you so much for your efforts.

  • Russerford,

    I really ‘hear’ you on the point that vocal family advocates in leadership roles often seem very concerned with protecting the image of the psychiatric profession and supporting the resulting drug recommendations – I have had the same experience. I have had a little different experience, however, with these same people’s reaction to the Pharmaceutical industry – I have found they do seem to have some worries about the corrupting influence of Big Pharma- I also find that despite this intense protectionism of psychiatry, they do also complain of being treated in a paternal way by many psychiatrists, and complain that many if not most psychiatrists do not listen properly to family members.

    I am trying very hard to understand this ‘ extreme protective role towards psychiatry’ that some of the vocal family advocates have, because I believe it is the key to reaching out to this large and potentially powerful group who have also been so victimized for so long by institutional corruption.

    I have noticed that vocal family advocates are the ones who speak the loudest about ‘evidence based’ treatment and yet seem unable to question the gaping holes in evidence presented so convincingly in `An Anatomy of an Epidemic’. Indeed when you read their arguments against so called ‘anti psychiatry’ positions, the arguments they use are full of erroneous science and the standard chemical balance myths etc, while at the same time usually include the phrase evidence-based’ treatment as their argument. When confronted with stories of people who have recovered, many of these family members seem at some level so unable to imagine that recovery is possible, that they do not believe these people were ever severely ill. I understand that family members are not necessarily scientists themselves, and might not trust a ‘dissident’ writer, but why are they not worried that the psychiatric community has not yet provided counter arguments to Whitaker’s arguments about long term recovery? This is so puzzling to me. I genuinely believe that most, if not almost all family members, simply want what is best for their loved one, so it is not the same ‘cognitive dissonance ‘ that happens to people whose ‘pay checks depends on them not understanding the research’.

    Severe distress is such a confusing, terrifying and agonizing thing to witness in someone you love. If often comes suddenly, seemingly out of nowhere, often with no overtly obvious traumatic event, and many times, as we all know, from a myriad of physical and biological reasons. To quote Sandra Steingard on this last point; ‘ Although many of these problems will turn out to be well handled in non-medical ways, not all of them will. There are endocrine disturbances, inflammations, vitamin deficiencies, even tumors that could be causing the problem. I once read a paper that was 100 pages long and listed all of the medical causes of psychosis.’

    Added to this confusion around ’causes’, is that the changes that accompany severe distress are often so dramatic that someone’s loved one seems to be like a completely different person. Now factor in how slow recovery can be, and that recovery can take the form of such small steps forward, followed by steps back to the point where you are wondering if you are seeing recovery or relapse.

    Now add that for some families -although certainly not our family and according to the research not for the majority of people – dramatic positive changes can happen after drugs are introduced particularly in the short term, and even for a few, the benefits last long term. All of this helps me understand how families have been led to so fervently believe that the psychiatrist just needs to find the ‘right’ combination of drugs to make this miracle happen for their loved one.

    I guess the point of my rambling comment is two fold.

    One is that we need to better understand whatever the ‘cognitive dissonance’ factors are for families that make them vilify people who argue for the benefits of treatments other than drug therapy.

    The second thing I think it could be important if we clearly expressed our awareness of the social injury to families that has resulted from institutional corruption, so they know we understand how traumatized and victimized families have been as well by what has happened to their loved ones. The NAMI families are a group of families – not a group of ‘bad’ families, and they never should have had their trust betrayed in such a way.

  • Thanks Madmom.

    I also want to let you know that I think of you and your girl often, and keep hoping for some kind of solution. I wondered if you have ever tried to talk to any of the lawyers on this site for ideas on how to proceed, and if anyone knows of any way you could access funding for legal help… ……….wouldn’t it be great if organizations like NAMI could instead provide that kind of help to families…….what a world we live in

  • I think a key area of potential support could come from somehow educating and reaching the families and loved ones of the seriously ill who have been harmed, and also the family and the loved ones of children who have been harmed by drugs.

    In the mainstream literature I still often read comments from family members who’ write off’ anyone who criticizes institutional psychiatry as they believe sites like mad in america is simply full of people who were wrongly diagnosed, and full of people who believe mental illness is caused by bad parenting.

    Once families and loved ones begin to understand how institutional corruption guided their decisions around treatment for their loved ones FOR SO LONG; or as Robert puts it, sees ‘society as the injured party;….and sees…the social injury arising from this corruption – I believe a very loud outcry would follow…….

    The family members and loved ones are the ones who, next of course to people with lived experience, probably know the most about long term distress, and the effects of long term medication, even if they currently believe that their loved one would have been ‘even worse’ without the meds. The general public, on the other hand, that does not have experience with long term serious illness are more likely to believe the fabrications: that the mentally ill are in one of three categories: 1. not curable, 2. on medication and doing well and participating in events to reduce stigma, or 3. off their meds and acting dangerous and crazy.

  • Thank you for this very informative post – The part that resonated with me in particular, was how ‘terr0r’ can be mistaken for rage, or a drug induced state or simply ‘crazy and dangerous’. I think the more we can understand and recognize terror, the more we can be there for people. It reminds me of earlier posts of how facilitating a ‘safe’ place for people made all the difference to their recovery.

  • I also wonder if Wunderink is continuing to f0llow the people in his study – I am hoping that he is and that he is seeing even more people recover as time passes. I wonder if the people who refused to go back on medication after their relapse , if they ended up in the group that finally recovered or the group that didnt recover.

  • Thanks so much for this article.

    I have always been confused by what was exactly meant by remission -particularly as my experience of watching recovering has been from seeing small increments of change over a long period of time – and thus at what level or with what criteria a subject was considered to be in remission?

    I also wondered whether the non-medicated subjects in Harrow’s studies took medications after relapse?

  • Thank you so much for this article.

    Imagine how different things could be if the psychiatric profession as a whole would speak out loudly for the necessity of informed consent to treatment, given the inconclusive evidence about whether long term drug treatment is helpful or harmful. Or if at least all the psychiatrists who realize they don’t know who will be helped by drug treatment in the long run, would speak loudly about the need to separate ‘forced safety’ from ‘forced psychotropic drug treatment’ in the case of serious mental illness, and would talk loudly about the need to conduct long term studies that compared medicated to non-medicated recovery.

    Really the change to the current system wouldn’t have to be more costly – simple having choices of ‘outpatient’ support that involved either medication, or a more open dialogue/umbrella approaches, having the choices of being on psychotropic medication in inpatient or sanctuary type settings, and most importantly providing safe care while clients and their families have ‘time’ to think through the different options and research before starting on such a serious drug treatment.

    Once choice is given, then it would be so easy to find the patients to conduct the research that is so necessary to see when and where, for how long and for who psychotropic medication is helpful.

    I know…I know…..people will be thinking ‘what planet am I from to suggest something such as this……

  • Thank you from the bottom of my heart for being such a menace to psychiatrists like Lieberman. Thank you for using your academic and literary talents to search so persistently for the truth about the effectiveness of psychiatric treatments.

  • I particularly appreciate your comments on ‘severe mental illness”For example:

    “Secondly, his use of the term “severe psychiatric problems” implies the existence of a discreet, identifiable set of problems, in the same way as the phrases “severe cardiac problems” or “severe kidney problems.” In fact, this is not the case. ”

    I fear that even when the ‘less ill’ (for lack of a better term) have found more humane and hopeful treatments, the severely ill will still be left behind to endure forced medication (even when it does not make them better), simply because we do not have the places or sanctuaries needed to meet their often extreme needs.

  • ‘ The indomitable capacity of the human constitution to reorganize problems and restore balance must surely be one of nature’s most magnificent achievements.’

    I believe in the above statement wholeheartedly.

    It is unbelievably challenging even to be a family member supporting a loved one in their struggle; particularly when `helping services’ play a role in ‘retarding or obstructing efforts’. I often think to myself ..if it is this hard for me…what about for my loved one,…and what about for others who may be on their own trying to struggle through. How can anyone find that much strength… but amazingly one does start to see the strength of the person push through.

    Thank you for such an important article that also highlights the importance of alleviating suffering -in ways that don’t create more suffering in the long term.

  • Thank you for such a thoughtful article and for all the work you have done over the years. Your videos have given us great hope.

    You write

    ”If Finnish Open Dialogue helps 80 or 85% of people in “first-episode psychosis” to recover, what about the 15 or 20% it doesn’t help?……. Or maybe, as some have suggested, those 15 or 20% of folks are a subset of people “in psychosis” that simply “need” the meds. I personally don’t believe that, though. I believe that given the right environment, no one needs the meds.”

    I am desperately interested in finding out any information I can about `subsets’ of people with psychosis whose symptoms may be made worse by medication, and if there is in fact also a `subset’ of people’ that could be helped by medication.

    As we all know the research shows that the rate for helping people who are medicated is much, much lower than the 80% to 85% of people helped by the Finnish Open Dialogue. I have always thought that the 15 to 20% who were not helped by the open dialogue approach, would still have not been helped if medicated. -e.g. that there are about 15 to 20% percent of people who are very difficult to help with or without medicine.) Do you know of any studies or have anymore information to add to this? I know there is a subset of people who do respond well to medication, but it is not clear to me that they would have otherwise been the `15 to 20%’. Identifying subsets seems like such an extremely important area of research for the severely ill.

  • Rossa, I am wondering about how long your loved one was on and off medication when he or she had the results you describe. (e.g. was your loved one off at first and then finally went on medication or did he or she start off on medication. Did you see the positive effects from medication pretty quickly or was did the positive effects go very, very slowly over a long period of time? I realize I should look to see if you have a personal story somewhere on this site.

  • Thank you for this post. I am always so happy when I see your posts as I find I have so much renewed hope after reading them! It is very interesting what you wrote about the importance of touch and compassion. As my loved one continues to heal we have noticed that a very positive change has been in the willingness to accept and give hugs and and massages etc, and lots of compassion towards animals. I like the idea of asking ‘what’s good ‘about different expressed scenarios in an effort to learn more about what could be helpful.

  • Dear travailler-vous,

    I also am so sorry and surprised to hear of your ongoing struggle. The reason why I say surprised is because I have found that you move through the comment sections of posts ‘peppering’ the comments with encouragement and kindness, providing lots of references and information, and also making respectful but strong statements about things you don’t believe in. I think it takes a lot of mental strength to be able to do this, particularly admist the struggles you experience on a daily basis. I wish you continued strength and perseverence.

  • Dear Ted,
    I am so sorry that this happened to you. It is so overwhelming to me to think of that little child and what he went through. I truly do not know how you were able to overcome that treatment to become the person you are today. I have found the journey I am going through with my loved one also very overwhelming, so watching your story helps me strengthen my resolve to keep hopeful and persistent.

  • “But they need to be tested. It is not enough to come up with a great new idea that seems to make sense. We need to try it out in controlled settings and see if it really works, while controlling for expectancy and other variables.”

    Thanks Randy,
    I think I understand now that you were making the point that many alternative treatments do not yet even have a base of scientific studies from which someone could judge them as either effective or not.

    I think that is a very important point, and I imagine as certain alternative therapies (nutrition therapies comes to mind as one example) are taken more seriously, there will be more opportunities and funding to build a richer data base. When that happens, these studies would also need to be looked at so carefully before they could be used to ultimately measure the effectiveness of a therapy.

    However, if pharmaceudical treatment options have been studied and have not shown to be “effective over the long term or to produce a better quality of life” and that information is not shared openly with consumers, that doesn’t seem to be any `better’ solely because there was “some attempt to see if they work”. It would only be better if the information on whether the
    treatments work or not was passed on to consumers.

    As a consumer in western society where the medical model predominates, I already have the understanding that I ” run the risk of (spending)…a great deal on treatments that are worthless,” when I seek therapies outside of the medical system. What blind -sided me that was that treatments within the medical system also did not have a solid scientific basis and had such potential for harm.

    Your article is amazing in that it shows the flaws in the process of scientific study in such an interesting and accessible way. But to me the result of seeing those flaws, should be leading to a resounding call out for the requirement of informed consent for standard, accepted treatments.

  • “There also was a lengthy discussion about how experiencing multiple traumas (unlike a single trauma) results in a shutting down response rather than hyperarousal and increased physiological activity. This includes: loss of emotion, loss of memory and language, shutting off of cognitive processing, deactivation of the brain, loss of physical sensation, social disengagement, miscommunication, and social withdrawal (McTeague, et al., 2010).”

    Is there any way you are able to write a blog that elaborates on thi s paragraph? .I would love to know how people look as they progress through this state, if they can be shut down cognitively for years and still recover. I wonder if people can be in this state without having undergone big traumas that are obvious to the outside world. It seems that this condition is very similar to what people refer to as severe psychosis with all the negative symptoms.

  • Hi Randy,

    Thank you for your articles and for being so willing to engage with people who comment in such a non-defensive way.

    ‘ When I look at the literature on alternative treatments the situation is generally much worse.’

    Could you explain more what you mean by this sentence. It seems to be one of those very broad sweeping statement that should be backed up with more specific details.

    What worries me about your posts is that is seems to me [and perhaps I have grossly misinterpreted you] that you make ‘light’ of some of the extremely serious problems and damage that has resulted from mainstream psychiatry’s use [and in some cases force) of very powerful drugs even though those drug treatments do not a solid scientific base. The vulnerability of the people whose lives have in many cases been so negatively effected, needs to be taken much more seriously. INFORMED consent is a huge issue in psychiatry.

  • Dear Gavanshir,
    I admire that as a medical student you are trying to understand the position of the so called “anti-psychiatry” movement before making a decision about entering psychiatry. I am imagining and hoping that you have or will also read Robert Whitaker’s books as they provide very in depth information about the very, very serious limitations of the science behind the prescribing practices of ‘mainstream psychiatry’.

    I am a family member of someone with a serious mental illness and have no time or interest in taking a ‘position’ either for or against psychiatry. I simply am continually and endlessly searching for information that will help me help my family member become well in the long term.

    Although I have come across arrogant, short sighted and patronizing psychiatrists in this journey, and at the worst, a couple of psychiatrists, who would blame the patient or family rather than accept they made a mistake; I have also come in contact with a very well respected, empathetic and caring psychiatrist who would have loved to see my child get better without medication, but didn’t believe it was possible. I believe this is partly because current day psychiatrists do not have experience with following unmedicated people with serious mental illness over the long term. I also believe it is because change can take years and most of the research that psychiatrists use to guide their practice our short term, and any ‘long term’ studies they do cite, are still ones that are under 2 years. All the studies that have lasted over 2 years ( that I have heard of ) show more positive gains without medication.

    Currently, my child is starting to show very slow but steady gains without medication, similar to the slow gains he had started to show after months and months of being on medication [The tragic part of the story for us and mainstream psychiatry is that in addition to developing very serious side effects (that likely would have developed to be life threatening and continue to negatively effect his life ); he also developed more severe SYMPTOMS after starting medication. So when the medication was stopped, we were starting at a ‘lower’ point than originally. Then my child went through a worsening period after the medication stopped before he started his slow climb back up.]

    Psychiatry has all sorts of answers for the pattern I described above ( and also for any observations people have that might argue against standard treatment). In the example above, psychiatry would say that my child got worse symptoms after starting medication because the illness was worsening. They say this as if were a ‘fact; rather than suggest it could be a ‘possible reason’. When illness temporarily became worse after the medication was stopped, they say this is proof that the medication is necessary. It is only after persevering for a longer period of time without medication, that I began to see the beginning of what I hope and believe is`spontaneous’ remission (or at least remission without medication – we are doing all sorts of other therapy etc.).

    My plea to you is if you do pursue psychiatry’ (and I think I hope you do given your willingness to come to this site,) is that you keep your mind open and don’t just accept the rationale that psychiatrists use to convince themselves that they are using best practice. Remember that until we recognize the limitations of the science behind psychiatry, the only way it will get figured out is if people have INFORMED consent about treatments suggested for them, and if people are then allowed to choose different options of treatment based on informed consent. If we then studied people over the LONG TERM who are getting GOOD care with different options, maybe we could figure out what’s what. (Who knows – maybe one day you could do a study like that.)

  • Dear Lovemylittleboy,

    It sounds like you are doing an amazing job and that your boy is so lucky to have you.
    I am also a mother trying to see my child through a different, but very terrifying ‘psychiatric illness’ without resorting to psychiatric drugs as I do believe psychiatric drugs are so powerful, so mind altering, and not really tested for the LONG TERM. I am afraid that the standard treatment prescribed by so many experts will hinder rather than help my child’s recovery, and that in the future people will be saying ‘I cant believe they used to drug children that way’.
    Here are a few thoughts I had about your comments:
    It sounds like your child is very bright, and it doesnt sound like he or you should have to worry about him doing his hated homework, It sounds like it would be way better for him to be engaged in projects he wants to do instead and that this could be written into his IEP.

    Also if ADHD exists as a disorder, this still doesn’t mean that the medications used to treat it are safe or effective’. I suspect that my child’s distress is likely a combination of a more predisposed nervous system interacting with emotional stresses – but even if his distress was completely caused by neurobiological factors – that still wouldn’t necessarily mean that long term use of psych drugs are safe for him.

    Best of luck to you on your journey of figuring out how best to help your son,

  • Duane this really resonates with me:

    ”And what is this fight of ours? In my opinion, it is to put an end to psychiatry by force. Plain and simple.

    If someone swears they were helped by psychiatry. Fine. If they continue to swear they were helped by psychiatry, fine also…. But we must put an end to psychiatry by force.

    And how do we get this done? That’s the million dollar question. I think we need to start out with the acknowledgement that the average Joe and Jane Doe have not a clue with what is taking place. ……..
    ….I’ve said before that I think we need to begin to work on getting a bill passed through Congress – the would put an end to forced treatment, replacing force with a variety of alternatives. This may be possible with amending the ADA; if that is not enough, then a federal law that would do so.””

    Hear! Hear! A call for a unified, legitimate, non-violent plan that I bet almost everyone on this site could agree with: END FORCED PSYCHIATRIC TREATMENT.

    I think the focus of increasing the awareness of Jane and John Doe is crucial – I know my network of friends (especially those who are parents) have been very open about learning about these issues, and some already had knowledge from other sources. It is the many people and friends I know who work in the mental health field who surprisingly seem to know nothing about the issues discussed on this site.

    I believe critical psychiatrists could play a very vital and supportive role. I understand how their hands are sometimes tied given the system they work in (and we don’t want them to leave the system and be replaced by a non-critical psychiatrist). However they could still speak up about the importance of ending forced psychiatry; and call loudly for the supports and services they need to have in place, so they can help to preserve the safety of all, without forcing treatment.

  • I am really surprised too that you haven’t come across parent groups angry about the kind of treatment you describe….certainly in every other area parents are often the loudest groups when it comes to potential harm of their kids. I wonder why this is? I am imagining it is both because the discrimination against families of those dx with a mental illness is so strong that they feel powerless to argue against the accepted paradigm of treatment (e.g. they feel that no-one will listen to them); and also because of the lack of informed consent for psychiatric treatments.

  • Dear Will,

    As a mother, I want to say the most grateful and heartfelt thank you for this article. If my child is ever in that kind of a situation, I pray he can have a connection with someone like you.

    We desperately need people like you to ‘direct our mental health system to try harder and do better for (us) and (our children) ‘.

    I truly believe once more families see and understand the hope you see, they will be jumping on board for a new treatment paradigm. (and it wouldn’t be more expensive then the current one). I think why most families act in the way you describe, is because they too feel hopeless, fearful and terrorized about ‘untreated’ illness, and they truly believe they are doing the best for their children.

  • Thanks Sandra for clarifying for me what you were saying.

    I think most people are not saying either ‘drugs are all bad’ nor are they `making assumptions that [their situation] applies to others’. They are saying that drugs harmed them, psychiatry cannot yet predict which people might get harmed or helped to a reliable degree and yet people (or families in the case of questions about capacity) do not have to give informed consent for questionable treatment, and that this is wrong (and doesn’t happen in other areas of medicine). When people make these points, many professionals write blogs that assume people are saying ‘drugs are all bad’ or ‘my situation applies to everyone’. They say ‘coersion is really only a paper tiger and is not a problem today’ or ‘alternatives should be provided to all except for the severely ill’ (even though medication hasn’t been shown to reliably improve the lot of many of the severely ill either.) And so the arguments and conversations go round and round and round.

    Timothy I think many of your points are very good and I too think that many of the issues you talk about could be a valuable extension to Whitaker;s work. However, ‘decentralizing the issue of forced medication’ seems far too contradictory to his basic premise to be considered an extension.

  • Sandra,

    I have always found your comments to people to be respectful so I am wondering if I am misinterpreting the comment you made above.

    Saying that people are ‘searching for [something] to blame ‘ such as toxic drugs, implies that toxic drugs are never harmful for some people. (otherwise we would of course blame the drugs in those specific situations, and do all we could to prevent those particular people from being forced to take them .)

    What people like me are only searching for is information and support that leads to solutions for recovery and safety of our loved ones. We naturally harp on about the things that seem to us to be the biggest threats to safety and recovery in our individual situations, particularly to any people within the system who we feel may have some power to influence change. My one regret is if any of my comments made the people who are trying to do their best in a bad system feel blamed.

    Timothy,
    I do not have a breadth of understanding about how many different people recover so I have no reason or authority to disagree with your article when you say “that medication is helpful for many people. The question is: for whom, for how long, and how best to weigh the benefits against the risks” I do, on the other hand, have an incredible depth of understanding about one particular situation, and I sadly know that if my loved one needed to be hospitalized for any reason, I am not likely to come across someone in the system who could answer the question you pose in regards to his personal situation. I am much more likely to come across someone who assumes medication is helpful for all. Yet despite this, and despite all my practical knowledge of his recovery on and off medications and despite my endless research, I might not have to give informed consent to a treatment in hospital even if I believe it will hinder or harm his recovery. Can you understand that fear which in turn does not allow me to “decenter medications in these discussions?” I do not want to interfere with the treatment of any other persons who are helped by medication. So I am not “taking a one-sided perspective on psych meds”. The current paradigm of care that allows forced medication when psychiatry does not know ” for whom, for how long, and how best to weigh the benefits against the risks” is the paradigm that is taking “too one sided a perspective on psych meds”.

    I am going to `try’ and stop commenting about this issue on future posts. I used to think that people who wrote articles that didn’t recognize that forced medications could be extremely harmful to some people, didn’t understand the circumstances of how some families live. I thought I was helping to provide another dimension to the problem which would hopefully lead to a better system in the future. Now however, I am starting to think that it is not that these people don’t understand the issue, it is that they don’t agree that is a huge danger to the well being of some people.

  • Eric
    I want to thank you for your ever insightful and thorough responses.

    One thing I wanted to note about the title is that though I at first was also upset by it, I then later felt extremely grateful that such a title could appear on the Mad in America website! It reminded me that Whittaker has always requested that the psychiatric community present counter arguments to his claims if they have them. It is what makes him the truth seeker that he is and it is because no-one in the psychiatric community has provided serious counter claims to the longitudinal studies that his research is so powerful.

    One other note – I believe that the reason that medications remains (and should remain) a central theme, is more to do with the subject of coersion than treatment. To use perhaps a not very sophisticated comparison, there were so many issues of poverty, discrimination etc, facing ‘freed’ slaves, but discussing these issues must have seen `extravagant’ to the people who continued to be enslaved.

    I agree with Mathew that many discussions on this site come back to medication , and conversations seem to go round and round with no resolution. I believe we could move forward with other discussions on this site if there was something very definite in place on the MIA that was working against coersive treatment. Perhaps one of many talented legal writers on this site could blog about strategies for setting up some kind of working paper that could be used as an alternative `model ‘ to current legislation. Perhaps there could be a forum set up to deal with this issue so all the people with lived experience who suffered under coersion, families facing fears about coersion, and critical psychiatrists dealing with the day to day conundrum of having no viable alternatives to coersive treatment could provide input that covered all the relevant issues.

  • I was so happy reading your article until I came to this paragraph;

    ‘Psychiatric hospitalization is clearly the treatment of choice when a person presents with safety issues such as active suicidal ideation or a very disorganized psychosis. Most often psychiatric hospitalization amounts to an aggressive trial of multiple psychiatric medications without any assessment of underlying factors. Very little is done to empower the individual with new skills/interventions to manage stress, diet, sleep, metabolic, genetic or related concerns’

    I know that some severely (and less severely) ill people are helped by medication but others are surely not. Those with ‘active suicidal ideation’ or ‘a very disorganized psychosis’ are among the most vulnerable of people with mental illness, and thus have less potential g to cope and recover from bad treatment of ‘aggressive trial of multiple psychiatric medications without any assessment of underlying factors’ The less ill are at least able to eventually fight back …….

    I feel that many of even the critical psychiatrists are seeming to abandon the severely ill and are assuming that the percentage of people who need medication include all of the severely ill. But shy do they think that? There is not yet any clear or valid way to assess which are the people who benefit from these medications. Many people become more ill after taking medication (and eventually become severely ill) and/or remain severely ill for years and decades ON medication (as opposed to the stories you sometimes hear about unmedicatied people who after many years do recover. )

    I realize that the severely ill require more intensive support to preserve safety, and their needs are more difficult to meet in a center such as you describe but please, please think carefully before making sweeping comments that ‘psychiatric hospitalization is clearly the treatment of choice’ for these people. If psychiatric medication can hinder the recovery of the moderately ill, doesnt it make sense that it has the potential of even greater harm for some of the severely ill? Please, we desperately need critical psychiatrists who will get on board to protect the right of the severely ill. People (and/or the loved ones of those people if they are too ill to understand the information) should have to give informed consent about these contraversial and often dangerous medications and treatments. People need to have the choice of recovering in some sort of sanctuary without medication, or a hospital if medication if taking medicaition is their informed choice.

    I love the sound of your center and deeply hope that one day it will include all people especially the most needy.

  • Happy Birthday Monica,

    I wanted to wish you a very happy 50th birthday and let you know that I am one of the countless people you have helped.

    For me the greatest help has been from the personal narratives you have collected which has helped me in my endless search for information that might resonate with our situation.

    I believe it is through the countless different stories that patterns will emerge that will deepen our understanding and thus lead to greater potential for healing for a greater number of people in the future.

    I wish you continued healing and happiness – you certainly deserve it.

  • Wow -thanks so much. I am always so grateful to people who give up their time to share personal information to help me try to understand how to best help my loved one.

    Hermes, your experiences really resonate with our situation. I am wondering if the ‘qualitatively different state’ you experienced with neuroleptic drugs changed back quickly after you stopped taking them or if it took quite a while? And also if your anxiety sometimes affected your comprehension of material [e.g.things you used to understand easily became more difficult to understand and thus setting off a whole cycle of increased anxiety)

  • Thank you …that is comforting to hear. And just to clarify – I am thinking these were people who also had ‘ catatonic’ like symptoms which presented like major cognitive difficulties in addition to positive symptoms, (and obviously if they are colleagues their cognitive impairments resolved).

  • I didn’t mean to imply that I wanted you to speak for her – I find it so difficult sometimes to express what I mean in print!

    I really do wonder what Elyn Saks would say about these matters , and I also am now thinking that a team of ‘critical lawyers’ could really help out the movement by drafting some kind of a guideline that looks at the concerns you and other people have been discussing here, Then people and families would at least have something to refer to, particularly as laws vary so much from state to state.

    Anyway – thanks for listening and responding even after you had decided you needed to end the discussion!!

  • Thank you so very much for your post and work in this area. This post , like so many others on this site, keep reminding me that what is missing from our society our sanctuaries where people can go to if their withdrawal regime becomes difficult……with sanctuaries I wonder if the overall success rate of tapering would be much higher. I hope programs like Beyond Soteria gather national and international momentum.

  • Just one more addition I just looked up Elyn Sak’s book “Refusing Care” and it seems it was published in 2002, long before Anatomy of an Epidemic was published.

    I wonder how she would weigh in on the discussion now forced treatment when treatment results for the long term are so inconclusive. Inded I wonder if she could be encouraged to post a blog about her opinions on this matter!!

  • Dr. Steingard,
    Thank you for all your time with this discussion.

    For me this conclusion does not address the particular concerns that I have.

    I understand the complexity of forcing someone’s safety and believe there are times to intervene and that those must be very difficult decisions indeed. I think Elyn Saks (and forgive me as I have not read the books yet – just the Ted talk and some comments) justifies forced medication for first episodes because she believes that her ‘former’ self would agree and want to be given the medication. For her, medication returned her to her former self,’ medication in combination with psychotherapy has worked wonderfully and for so many years without (from the outsider view) the difficulties with metabolic syndrome or cognitive or emotional difficulties.

    I don’t think there would be a Mad in America site or discussions like this if medication had that result even for the majority of people. I do wonder (and I guess I better read Elyn’s book) what she says about the people who seem to get worse symptoms after medication has started, or who remain permanently ill on medication.

    It is because of the state of the present day science, which has no valid way yet to diagnose people, nor to know who are the people that will benefit from which medication, and which people will recover in the long run, that discussions about forced medication have an ADDITIONAL layer to go through BEFORE deciding whether interventionist approaches are justified.

    I know you said that this was your last post on this thread but I do wonder if psychiatric patients and their families are given the same hearing that the man u described who was undergoing surgery was given. I wonder if judges are called when psychiatric families or patients refuse medication and if the family’s opinions of past failure with medications is taken into consideration, or if it is only the psychiatrist’s, who may have just met the person, opinion that is counted. I wonder if people are put on psychiatric medication first as these issues are worked out. Remember the vast number of people will not have you as their psychiatrist but likely someone who would not be aware of any of the literature on this site. I am reminded about the recent blog of Elahe Essemar on this site who, when I asked her what strategies she had in place to prevent future hospitalizations, wrote back that this was her greatest fear. And this fear that her daughter could be forced remains despite the fact that her daughter came OUT OF a catatonic state 2 years after stopping medications. I really do think that the possiblity of creating ‘supersensitivity to psychosis’, and not knowing to whom this will apply , has to make the decision to force these medications different than for other situations.

    So for me this discussion has loudly and clearly answered the question of your article which was do we Bring back the Asylum. Although I would no longer personally use the word ‘Asylum’ because of the painful stories this triggered on this site, it seems to me that having some sort of humane “santuary’ where people can be taken to avoid being forcibly started on psychiatric medication which once started, cannot necessarily be easily stopped, is the only way to solve this issue for people who I would argue are the most vulnerable in society . Surely a humane santuary run by the proper people would be better than either the jail or hospital for the people I worry about. If there was a santuary, then more time could be taken to make sure good decisions were made in those severe cases where is seems intervention is required. ( I can’t imagine how good decisions can be made except by chance in overcrowded emergency psych ward in the few hours or days it takes to start these medications) And for people and families like Elyn Saks who have found that they or their loved ones are restored to their former selves with medication , they could write contracts outlining the type of intervention they want. (and in the absence of a contract, again having time to review their past, talked to loved ones etc to see what they would likely want to happen)

    It seerms that these kinds of services are being started up with the Mental Health Excellence site and the Beyond Soteria project.

    When I read over my posts to so many people on this site, I realize I must sound so repetitive. But it does feel to me that society is not seeing how urgent this issue is, , and how horrific the results can be for some of the severely ill .

  • Thank you for your response.
    You write
    “You are also correct that there are reports of cognitive difficulties for some people early on. What I have always wondered was to what extent this might be due to the crisis state.”

    I would so like to understand more about this. Are you able to explain this a little bit more?

    One person told me that for these people, it is like their brain has `closed down’ temporarily into a a primal `freeze’ state (rather than flight or fight) -that when the person is extremely distressed, the emotional part of the brain is so over stressed that information can’t get up properly to the cortex. [please forgive my layman’s interpretation of the brain).

    So another question I have is do you see psychotic people with these kinds of cognitive impairments, who are medicated, recover over time? The only recovery stories I have heard for people in this condition are from people who were not medicated. Thirdly, there is now a lot of mainstream literature that talks about the cognitive deficits that accompany schizophrenia and mood disorders, and I am left worrying that maybe we are hearing more about cognitive deficits accompanying pscyhotic disorders because the medication interferes with the cognitive recovery of this `freeze state’
    I apologize if this is a diversion from the topic but I long so much to try and figure this out; so any discussion or ideas of how I could research this more would be so helpful.

  • Thanks for this very informative article and for all your hard work.

    You write

    ‘But of further concern, these effects were seen even if the drugs had been stopped years before the onset of dementia.’

    Do you have any more information about this such as whether length of time or dosage strength related to these effects?

    Severe cognitive difficulties seem to be part of the picture for some people with psychosis right from the beginning. I am thinking the effects you are talking about are ones that are more gradual over time?

    Do you have any suggestions for further reading about pscychosis and cognitive difficulties?

  • Thank you so much for your beautiful article.

    I am wondering how you were able to stop all medications without interference from the mental health system. Is it that Helia was already at home? Do you have strategies in place to ensure she is not forcibly hospitalized in the future?

    I am thinking that families need to form a network to share ideas in this regard. I can’t believe how much Madmom’s family and others are suffering over and above the suffering of the original distress.

  • Very informative article – thank you.

    Someone Else,
    You write that “six months later I suffered…..drug withdrawal…”manic psychosis” Do you mind me asking how long the psychosis lasted? What dosage you withdrew from and whether you tapered when you withdrew?

    Also do you or anyone else know where I can read more about this kind of reaction that can happen around 6 months post neuroleptic withdrawal?

  • Eric,

    This is such a great post. I hope through this whole discussion a movement to provide funding for alternative services on a larger scale will be born.

    Dr. Steingard,
    Thank you so much for opening this discussion. I think the fact that you continue to work as a critical and caring psychiatrist within the system, without always having the adequate supports available to preserve safety, is truly brave and honorable.

    I think as a family member living somewhere where there is inadequate support for my loved one, I can truly understand the dilema where one might have to choose the hospital Hopefully recovery for our family will continue in the positive direction it is going so we will never again have to face that decision.

  • Beautifully said! Dr. Steingard has already done so much to help give credibility to alternative approaches and we need to all work together for changes to community support. I wonder how this can best be organized?

  • I just want to add although starting at the beginning would be ideal, people on their second break or third break or whatever, should also be given the opportunity to be in a safe place where the crisis can run its course without medical intervention.

    The people in many stories of recovery started off on drugs, or had many relapses, or like Katherine Penney, went for years prior to recovery. Somehow -whether it is in an ‘asylum’, soteria house, healing home or hospital people must be allowed the chance to work through a crisis without medical intervention if it seems that this is their best chance for recovery.

  • Is that kind of an option available in Vermont?

    There are no places where I live where people could go to when they are in extreme distress, without having to take anti-psychotic medication. And there are no services that go into the home that do not involve forced medication. So having this option could provide enormous support to families who fear what the science is saying about antipsychotic medication.

    And at least for those who decline this option, if there had to be `force’ it would be a better option than AOT, prison or hospitalization with forced medication.

  • I just wanted to add that having safe places to take people in extreme distress to, takes away any ‘justification’ of AOT (e.g. with proper supervision and care, noone could say these people were a danger to themselves or others)

    I just wanted to add that a proper ‘asylum’ could create the environment needed for recovery. Now, people who believe medications hinder the recovery of their loved one try to provide a ‘healing home’ in admist a very prejudiced and misinformed society.

    A protective setting could be set up so a person could work gradually to their independence – go by themselves to exercise or swimming or possibly to little shops etc, , go to work or school settings with people other than their family; knowing that there were trained and humane people who could step in when their stress became overwhelming. Maybe a percentage of people would make this their permanent home (research indicates around 10 to 15 %???), and the other 85% could eventually increase their independence to return to the community. Maybe some clients would be ‘day visitors’ living at home with their families, or parttime residents or working there as peer counsellors or in other jobs as they help the newly or more seriously afflicted.

  • Thank you Eric for your thoughtful comments.

    D. Steingard, my point is similar – how long has Soteria house Vermont been operating? Think how many years it took for the people in Harrow;s studies to recover.

    People in extreme distress need safe and humane places to go through their distress, possibly for years. They need it now, desperately. Families desperately need some safe place to take their loved ones when they need a break etc.

    What is criminal is that people can be forced to take medications which could hinder their long term recovery. AOT results do not cite research that relate to `recovery’ (e.g. improved cognition, independence etc.) but to things like decreased incarceration, homelessness etc, that would be the result if a person was well, but also if they were sedated!

    So please, let all of us who are worried about the long term effects of antipsychotics work together to focus on providing a system that includes forced safety for the severely ill -when necessary – that is independent of forcing drugs that could harm or hinder recovery. Once people are safe, then the discussion of whether or not medication is used can be a choice of therapy If a humane asylum as described by Eric is created and closely monitored , it could be an important part of that picture that stops forced medication.
    Forced medication, given the state of the research, is the real urgent problem now.
    Imagine if people were being forced to take street drugs which everyone acknowledges can seriously harm people – imagine how that would play out in the news.

    Thanks, as allways for the time and concern you spend on these issues.

  • Thanks so much for sharing your story. I believe people will be really helped by it, and I hope it will be widely viewed.

    I hope you don’t mind me giving one piece of critical feedback. There were a couple of times that you made comments that I think some people who experience psychosis for other reasons then iatrogenic illness, or for whom iatrogenic illness is only part of their problem, could possibly feel discriminated against. I think you said things like ‘my mom didn’t think I was a crazy person, I was almost the crazy person in the bedroom of my mom’s house’ or some things like that.

    Thankfully, there seems to be great hope now for recovery, not only for those who suffer from iatrogenic illness, but also for those who are suffering from psychosis for different reasons. Whether their psychosis results from iatrogenic illness, trauma, weaker neurological system or any combination of psycho/social/biological reasons; I think it is important to think of all of those people as human beings in extreme distress rather than having them fall into a different `category’ as a `crazy person’ .

    Aside from the one criticism above, I think you have done an amazing job. It sounds like you have gone through such a horrible time by those who were supposed to help you, that you have great strength and now you are trying to help others in a very uplifting and entertaining video. Bravo.

  • Thank you so much for your post. I cried through it all. Stories of people who have recovered from extreme mental distress are so important to us out here trying to help loved ones recover. Have you or would you consider doing a post on the journey of your recovery? -e.g. what recovery looked like at different stages, length of time in different stages , meds’ nonmeds etc? I know everyone’s journey is different but it can provide so much hope for others when you see similar patterns and then you see the healthy whole person at the end.

  • I forgot my final point which is to say, Dr, Frances, that if any of the arguments from the debate with Mr. Whittaker can sway your opinion about forced ‘treatment’ in all its forms, and if instead you could loudly support an evolving system that includes both safety and choice – I believe you would have enormous power to effect great change.

    (And finally I want to apologize for using specific examples like ‘lost in Seattle’ – that teenager could well be doing much better now, or will be in the future and I certainly am routing for her recovery – so sorry to her loved ones if any of you happen to read this site)

  • I wanted to add something to my earlier post so am hoping this will appear under it.

    About prison and focusing on alternatives:

    After rereading this debate, I realized that in the same way I am very frustrated about how Dr, Frances does not seem to listen to what people are saying about the harm of medication over the long term, nor provide any evidence as to why he feels Mr. Whittaker’s reading of the literature is one sided; perhaps on his side Dr. Frances feels frustrated and not feel listened to about his point of the horrific situation that the mentally ill face in prison and on the street.

    I just wanted to add that although I don’t have personal experience of the prison system, after caring 24/7 for a severely ill child , I am someone who CAN well imagine that prisons could be full of severely mentally ill people who either don’t have the support of loved ones, or whose loved ones can’t support them for all sorts of reasons, including the dis-empowerment of families that can result after children are treated in the mental health system.

    If our child did not have intensive support, he would likely have had no hope but to end up homeless or in prison, and I can well imagine if he ended up in either of those places, he would have suffered horrific abuse, and even more discrimination than now.

    So if we were thinking of a productive way forward, I believe we must all focus our energies on creating programs that provide alternatives to AOT, prisons, and homelessness in all states so people truly have choice of treatment. Once people have choice, imagine the possibility for ongoing long term studies comparing the effectiveness of meds to those who choose the nonmedicated approach. Finally we could get definitive answers as to how, when, how much and to whom medication is most likely to be effective. Finally we would have a chance to replicate the studies of open dialogue.

    People who do well on medication and our fearful of their lack of logic during a crisis, could write up contracts with their loved ones to ensure they would receive the medication they would want to be given during a relapse.

    Safe places for our children and adults would not be more costly than our current medical system. Our child currently costs the system nothing but is a huge cost to our family. Having some support such as people providing support in our home, have a `safe’ place to take our child when the burden is particularly heavy, or even funds to set up a ‘safe room’, open diaolgue approach, respite, soteria houses – all of these things are possible,

    Once my child is better -that will be my mission – to promote these services. Are there people out there who are able to start the work now?

    As a parent I am very pragmatic and I don’t care if this happens within or outside of the mental health system – whatever is the quickest route to provide safety without forced medication for people. I shouldn’t have to give up what I see as my child’s ‘best hope’ for long term recovery because I am afraid of safety in the short term. I want my child to have a fate like ‘Katherine Penney’ or like the mother 0f ‘Mary Copeland” not like the teenager in ‘lost in Seattle’

  • My child also gained about 80 pounds in 4 months from antipsychotic medication. I thought he would lose it rapidly -becasue of he had gained it so rapidly – but now after 8 months of being off the drugs he has not. In addition – being fat is the most frequent, repeated theme in his low self esteem. His food cravings changed on the medications – he used to be a great healthy eater and now craves carbs and sugar. Somnetimes the only way to get him out of bed is eating something he likes. He was not sedentary until after being put on all the medications – oh what a vicious, relentless circle. Of course obesity is now adding to decreased energy etc.

  • I am the mother of a severely ill child who knows first hand that coercive treatment is alive and well, and perpetrated for the most part, by well meaning people in a misguided system.

    Thank you Robert Whittaker, for shining a clear light on the real issues that keep getting pushed aside. I have been so distressed reading Allen Frances’ posts to the Huffington Post which don’t seem to consider the possibility that medication could harm some of the severely ill.

    In terms of medication and forced treatment
    HOW CAN IT BE EITHER LEGAL OR MORAL TO FORCE MEDICATION ON ANYONE, WHEN AT THE VERY LEAST, IT IS NOT KNOWN WHETHER THE MEDICATION WILL ENHANCE THE LONG TERM RECOVERY OF THAT PARTICULAR PERSON, AND AT THE WORST, MAY CAUSE HARM, AND MAY BE PREVENTING THE `NEUROPLASTICITY’ OF A PERSON’S BRAIN FROM HEALING ITSELF.

    Dr. Frances, for the severely ill patients on AOT, the ones who do not recover fully after they are forcibly medicated, how do you justify their treatment in terms of `FIRST DO NO HARM’ ?

    `Forced safety’ needs to be separated from `forced medication’ and there needs to be places for people in acute psychosis to go to be safe. where they are not also going to be forced to take medication that may or may not harm them further. If there were these places, then surely the prisons would not be so full of the severely mentally ill. Forced medication should not be the tool used to decrease prison or hospital visits, homelessness etc, or to manage behaviour;’ I imagine the negative affects alone that can occur with medication -apathy, sedation etc.- would be enough to reduce the number of people who are in prison – So certainly forced medication can only be justified in terms of whether or not the medication promotes WELLNESS in a person, For myself, if I had the choice of going to prison-without getting forcibly medicated – or of staying out of prison and being medicated which resulted in disability, worsening of illness or cognitive decline – I would choose going to prison.

    As a parent, several stories haunt me. These are stories of people who became or remain severely ill for years and years while being kept on medication. Among these stories are ‘Dorothy’ who Torrey writes about in his book `Surviving Scizophrenia’ who sits for decades -presumably medicated- politely nodding but with a`paucity of thought’, even though Torrey explains this same woman ‘recovered somewhat’ from an earlier pscyhotic episode without being on medication. Whittaker’s story of ‘Lost in Seattle’ – the teenager who only started to have symptoms after medication and has now been lost in her own world for years- how do we know how these people would have fared without medication……I guess we don’t and that’s the point….please Dr. Frances remember your oath to FIRST DO NO HARM when you think about whether or not forced medication is ethical.

  • Dear Dr. Frances,
    I wrote you an earlier post about this article and now here I am replying instead about your most recent Huffington Post `We should all be ashamed’ article in the hopes that you will see and read it. I haven’t figured out how to post anonymously on Huffington post and am too fearful for my son to draw attention to our terrifying fear of forced medication.

    You say in your post
    ‘The most contentious issues are the value of antipsychotic medication and the occasional necessity of enforced treatment. Dr. Torrey’s research and clinical experience has convinced him (as has mine, me) that proper use of medication for acutely psychotic and for recently stabilized individuals is absolutely essential in resolving symptoms and reducing the appreciable risk of relapse. ‘

    This comment siims to disregard the research discovered and presented by Whittaker. This body of research indicates that in the long term, more frequent relapse is not the picture. – Could you please post any additional research aside from the article from China that is discussed by Whittaker, that shows less relapse in the LONG term?- In addition, although psychotic symptoms can be solved for some or many people in the short term by psychotropic medication, it has not been proven to benefit the long term full recovery of people – and that is what people in the recovery movement are most concerned about. I mentioned in a previous post, a careful read through WHITTAKERS analyses such as ‘THE FAT LADY HAS SUNG’, his responses to critics and his queries –e.g. such as his questions as to whether or not the difference between the 80 per cent success rate in the open dialogue results as compared to the 40 per cent success of the Wunderrink study could be due to the initial use of psychotropic medication? –outline the concerns of many of the people who have a severely ill loved one.

    YOU SAY. .
    ‘ But that doesn’t mean it is safe or optimal for others who have more acute, severe, endangering, pervasive, and impairing symptoms which puts them at risk for prison, homelessness, chronicity and a terrible outcome if treatment is not promptly offered.

    Of course psychosis – what you refer to as `untamed psychosis’ can lead to prison and homelessness if a person is not kept safe. That is why people who are justifIbly concerned about the damaging effects of medication on their loved one, need viable alternatives – such as Soteria type houses and healing homes, or out patient programs such as are done in open dialogue approaches, or for goodness sakes, HOSPiTALS settings that don’t FORCE MEDICATION- to keep their loved ones safe while they go through the extreme part of their illness. In terms of chronicity and terrible outcomes, the jury is really out as to how much current treatment could be contributing to that problem.

    You SAY;
    ‘It is crucial to find a middle ground that will allow joint advocacy and caring for those most in need. This has been possible with Eleanor Longden of Hearing Voices ‘

    I had mentioned Eleanor Longden in a previous reply to you as an example of someone who represents a very reasonable approach because I knew from your articles how much you respect her. I believe, however, from your own article about her opinions, and from her book, that she believes medication should be a choice. Perhaps before using her in your argument about what the `middle ground’ is, you should clarify with her whether or not she believes in assisted outpatient treatment with forced medication, or if she would believe more in a system that also allows for other viable choices that don’t include forced medication.

    On the Treatment Advocacy center website, there is listed research showing the following effects of AOT programs;
    ASSISTED OUTPATIENT TREATMENT REDUCES HOMELESSNESS.
    ASSISTED OUTPATIENT TREATMENT REDUCES ARRESTS AND INCARCERATION.
    ASSISTED OUTPATIENT TREATMENT REDUCES VIOLENCE, CRIME AND VICTIMIZATION.
    ASSISTED OUTPATIENT TREATMENT IMPROVES TREATMENT COMPLIANCE.
    ASSISTED OUTPATIENT TREATMENT REDUCES CAREGIVER STRESS.

    However, as there are not other viable choices than AOT for many people in extreme states, it is basically saying that people in psychosis need help and support from others to stay safe, and that it is extremely stressful for others to keep them safe without support. What is eerily missing from this list of reductions and improvements in this above list, is any research about whether AOT results in improvement of function or independence or cognition of the severely ill. It is inhumane. In my opinion, to use treatment as a way to control behaviours, if it is harming people’s recovery.

  • I too am eager to read these posts.

    When you get to the medication post please emphasize the point that for some of the severely ill who cannot speak for themselves, the issue of forced medication is terrifying. Although some of the severely ill are helped by medication and get better, others stay on medication and stay severely ill for their lifetime.

    There needs to be viable options for people in extreme states, and medications can’t be forced particularly while the science is at best contradictory. While the risks versus benefits remain unclear, the loved ones of those who cannot speak for themselves, need to be informed of all the research as outlined in Whittaker’s post, and need to be able to have a say in the treatment decisions made for their loved one.

  • madmom,

    I just want to say I am so, so sorry for what is happening to your family and I agree that the biggest help for our children is any work that can be done to promote safe and healing alternatives to forced treatment- through trying to create Soteria type homes, and by speaking out against coersive treatment – Surely with the current state of controversial research about psychiatric medications, arguments could be made that for a person in an extreme state, at least the person’s family or community advocate would have to agree with the medical team before treatment could be forced. I know that wouldn’t be ideal but at least would give people more of a chance to provide safe environments without using harming medications

  • Dear Dr. Frances,

    I am a family member of a severely ill person and before this illness, did not have negative feelings towards the mental health system. I also have no other agenda then trying to get my family member well.

    Hospitalization and medication preceded the change of our family member from being ill to becoming severely ill. Pyschiatrists will tell you that is due to the underlying nature of the illness. But they can not KNOW that that is the case. We have learned over the course of time, that psychiatry -even at the most specialized level – is very defensive and does not look at any factors that are critical of their approach or their members. When people become more ill under their care, they are also quite ready to blame family or anything other than their treatment approach.

    My argument with your opinions are two fold. First of all, psychiatry does not yet know how to determine who are the people who benefit form medication as compared to who are the people it harms. Thomas Insell talks about the need of psychiatrists to be humble, as the entire assessment and treatment paradigm for psychiatric illnesses is undergoing a complete overhaul.

    Thomas Insell also says , as I am sure you know, that psychosis has many trajectories and for some people, antipsychotic medication prevents them from becoming well although for others, he believes, stopping antipsychotic medication can be disastrous. I have noticed that people who blog about mental illness from a more mainstream perspective interpret Insell’s comments to mean that it is the severely ill who benefit from antipsychotic medication. This is not what Insell says, and I have the very scary impression that antinpsychotic medication can in fact make and keep some of the severely ill in their severely ill condition. A very careful read through Robert Whittaker’s post and blogs lends a lot of support to this devastating possibility, and providesytheories as to why it might be true.

    My discussion this far probably makes my second difficulty with your opinions somewhat obvious. This is your dismissal about the seriousness of coersion for the severely mentally ill. Since the long term effects of antipsychotic medication is at best unknown in terms of its helpfulness versus harmfulness, forced drugging is likely causing harm for at least some of the severely mentally ill. Indeed many of the recovery stories of people who were severely mentally ill come from people who either didn’t take, or stopped taking antipsychotic medication. Remember, I am pretty mainstream and a family member of an ill person , so forced temporary `safety’ is not repugnant to me – forcing a drug treatment which may ruin the chance of long term recovery is quite another thing.

    I think we already have a `middle ground’. I believe Robert Whittaker is the `middle’. He says that he believes there are biological markers as well as emotional distresses that underlie psychiatric illness, but he believes that the science underlying treatment with psychiatric drugs is flawed. I believe Sandra Steingard is the `middle ground’. She painstakingly reports what she has experienced, regardless of a `position’ . In light of Whittaker’s research, she avoids the initial use of antipsychotic medication if the person can be kept safe without it. I believe Ron Unger is the middle ground. With his ever present messages of hope, he acknowledges that once medication is involved, it can be impossible to tell whether the ups and downs of mental distress is due to medication or illness. And I believe Eleanor Langdon is the `middle ground’. She has written that is only by `chance’ that she recovered despite the fact that her previous interventions were from other psychiatric teams, not from primary care doctors, as is the case with my family member.

    My plea to you Dr. Frances, is to join the middle. You could have an enormous impact on appropriate care. You have shown your willingness to enter into dialogue and are at the same time a respected member of the psychiatric community.

    To me the middle includes :
    -taking very seriously the potential devastating consequences of forced drugging especially for the severely mentally ill
    -advocating for alternative `Soteria’ type places or healing homes where people in extreme states can be kept safe without forced drugging
    -recognition than neither the assessment nor treatment of psychiatric illnesses with drugs has been proven to do better than treatment without drugs, and that successful treatment without drugs can takes years -therefore people need to have the option of allowing their brain to right itself in this slow manner without forced drug intervention
    -people who are certified for their safety should be allowed to have a support person staying with them. For example I know that the `poster boy’ for a mainstream Early Intervention program told me that when he feels a relapse coming on, the last place he wants to be is at the hospital – he wants to be with his supportive people
    -recognition that some people do want to have forced treatment because the drugs have worked for them, and devising some kind of contract system that allows them to get the treatment they need – here I am thinking of that amazing law professor who did a Ted talk, and some parent advocates for forced treatment
    -careful ongoing examination of research to try and determine if and when medications are effective
    -not letting short term gains interfere with long term recovery
    -not using long term medication to control behaviour – only for promoting real recovery
    -thinking honestly about severely ill who are on long term medicaton – If they are not getting better shouldn’t they be taken off the medications so that we are `doing no harm’ and giving their brain at least a chance to right itself like the story of Mary Copeland’s mother on Beyond meds.
    -listening and respecting the rights and information of patients and their loved ones

  • ‘ I continue to think we are better off criticizing specific ideas, themes, treatment approaches, even specific doctors if they have acted badly. I also think we are obligated to shine the light on all solutions’

    Dear Sandra,

    As a parent of a teenager with either `severe mental distress’ or `severe mental illness’, whatever one wants to call it, there are a few people to whom I silently express my heartfelt gratitude every night as I search endlessly for possible ideas that could help my child’s recovery. You are one of them. Please keep writing and passing on your thoughts and experiences of whatever treatment approaches you believe will help those who are suffering so much they could never participate in the discussions on this blog.

    My admiration and faith in you skyrockets when I see you criticized by both individuals from mainstream psychiatry and by individuals from (for lack of a better word) `the antipsychiatry’ movement. It seems to be so difficult for people to say exactly what they think without taking a particular `stance’ or `side’. and your comments are so important to me given they are so completely honest, and come from someone with a great deal of experience and study.

    Thank you