Thank you so much for doggedly pursuing this. Your letters to the college and their response shows that no regular person would ever have a chance of having their complaint heard. I look forward to hearing about your ‘next step’!
Thank you so much for doggedly pursuing this. Your letters to the college and their response shows that no regular person would ever have a chance of having their complaint heard. I look forward to hearing about your ‘next step’!
For me you have really ‘done it again’ with this article – summarizing in a very coherent and clear way, things that are often presented in such a complicated and confusing in so much of the literature. Your thoughts resonate so strongly with me.
Thank you Eric _ I love your articles. I am always laughing and then crying as I make my way through them. Your humanity and honesty shines through.
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.
Wow -free resources that are easily accessible, easy to download, in different languages etc. Thank you for this!! I skimmed the first module and liked it very much: clear, straight forward, pragmatic presentation of information and practical homework.
– I will try to come back with more comments after looking at it more deeply etc.
Very inspirational ….thanks Rossa
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.
P.S. I am also very interested in hearing any responses to Brett Deacon’s question (above) about using the term ‘neurodiversity’.
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!
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.
Loved the song.
Also my deep, deep appreciation to you for including harmed families in your dedication.
I believe they are so many family members out there who will become much more vocal advocates when they either fully understand how they have been misled, or when they no longer need to ‘fly under the radar’ to avoid coercive treatment for their loved one.
Thank you so much. I will do this and get your book as well. I am wondering whether or not different options are available (eg, hair anaysis or saliva or something) for someone not willing to go in for blood tests.
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.
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.
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.
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?
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.
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.)
George Atwood’s website is an absolutely amazing reference – Thanks.
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.
Thanks for your response and for your honest opinion about the effects of clozapine….. By any chance do you have an email available for questions?
I somehow posted the above reply (about our breakthrough) twice and have deleted the second one here but now cant edit the first:(( I noticed I wrote ‘your article here’ when I should have wrote .Noel’s article here…
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!!!
Would you be able to provide us with some clarification here?
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).
Just wanted to say that perhaps one main difficulty preventing SOs to ‘band together’, is simply because of confidentiality issues. ‘Sos’ are often speaking for those who not yet able to, or don’t yet want to speak out for themselves, so it becomes problematic for SOs to participate in anything but an anonymous way :(((
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.
Thanks wo much Emily for sharing your story. It has never made sense to me as to who gets to label who, or who decides what personality traits are normal. I am so glad you have decided to believe in yourself and your own deep emotions.
Thank you so much for your story Kat. I admire so much the strength you must have to have persevered for so many years. Your writing is very powerful and moving – I believe your story will be able to help so many others gather strength to believe in themselves.
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.
I have also been reading your comments. And I also believe that if somehow all the information held by SOs observing and interacting 24/7 could be collected, so much insight could be gained.
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.
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.
I agree so much with what you say…the worry, concern and fear experienced by highly emotional and sensitive people which leads them to believe they cannot be safe in the world seems key to the difficulty of climbing back out of an extreme 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)
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’.
To Madmom: ‘a facade of normalcy’ and ‘staying under the radar’ is NOT always because families are ‘aspiring to be normal’. For some families it is the only way to ensure that the net of forced treatment is avoided….,
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.
Also I wonder if you went through the same kind of severe illness for the first 6 months of treatment in the same way that Sara did.
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…..
Thank you. How did you figure out what dose you needed?
I am curious how much you both take of B3, and if you take it as a supplement or try to get it through food?
Saw your comment on the sidebar and just had to log in to say thanks for the best laugh I have had in a while!
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.
Wow – this video was for me one of the most thought provoking and inspiring things I have seen in a long while. Thank you for sharing it.
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:))
…or even could the blogger decide when to ‘close’ the comment thread (hopefully politely) when they had enough, like we do with other types of conversations (e.g face to face or phone conversations)
okay …think I am done now :))
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.
MartinMc – this is so insightful and very well written. I really agree with Steve that what started as a contentious issue has ended up creating a very thoughtful discussion.
Hear! Hear! Steve thank you so much for this summation -it actually brought tears of ‘hope’ to my eyes – imagine if we could create the community here….that we need ‘out there’!
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`.
Have you written up your story somewhere about your experience living with someone with d i d. I would really appreciate hearing the details of your story.
“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.
Great to see these tributes to Mickey Nardo here on MIA. Thanks to you Sandra, and to David Healy for that. I will so miss going to visit the one boring old man blog, and look forward to the book. We have lost a strong voice fighting for truth in psychiatry/ My sincere condolences to Mickey’s family.
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.
Great article – I hope the people from SAMSHA read it!
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.
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.
I absolutely agree with Truth in Psychiatry’s point here. In addition given that antipsychotics can increase sensitviity – using antipsychotics during brief acute stages may well be changing a ‘brief psychotic attack’ into a more severe psychosis for some people.
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.
Thanks for trying!
Thank you for sharing your story. My thoughts are with you and wishing you strength.
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
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!
Have you written anymore on this particular topic that I may have missed? We are seeing ever so gradual improvement in our loved one and I am always thinking of this topic and trying to figure out the best way to support!