“Sometimes I allowed my thoughts, unchecked by reason, to ramble in the fields of Paradise, and dared to fancy amiable and lovely creatures sympathizing with my feelings and cheering my gloom; their angelic countenances breathed smiles of consolation. But it was all a dream; no Eve soothed my sorrows nor shared my thoughts; I was alone.”
Frankenstein by Mary Shelley
“During a TMS procedure, a magnetic field generator, or “coil”, is placed near the head of the person receiving the treatment.:3 The coil produces small electric currents in the region of the brain just under the coil via electromagnetic induction. The coil is connected to a pulse generator, or stimulator, that delivers electric current to the coil.”
There is a certain easy parallel to be drawn between John Elder Robison’s Switched On, and Mary Shelley’s Frankenstein. Application of electricity near the region of the brain via TMS strikes me potentially as the nightmare of fiction brought to life in the neuroscience labs of today. But mostly I chose this quotation because it is the version of autism as the alienated monster in John Elder Robison’s book which unsettles me so.
A Shot In The Dark is a personal response to a new book called “Switched On” by autism advocate John Elder Robison. Switched on is an account of his experience as a subject on an experimental research project for Transcranial Magnetic Stimulation/ TMS. It must be said right away that this was undertaken by John as a potential treatment for his autism. Many autistic people I know, would flinch at such a notion. I flinch because this hurts me. I feel I don’t need a cure, but rather that what is needed is understanding. But I remind myself that autistic people can suffer distressing co-morbid conditions, and their families may struggle to understand the distinction between this fact and the alternative paradigm of autistic consciousness. Society is also cruel to difference and especially cruel to the physical embodiment of difference. Autistic people and their families especially suffer societal cruelty. This too is often confused with autism itself.
The spectre of autism cure (rather than social change) can thus appear as a dazzling light, which blinds many to such reasoning, when reason is what is most needed to see our way through what is a tangled web of shifting and often suspect moral values, and a bloody history of crimes against disability. This book, I will argue, seeks to hover in a the kind of vacuum (devoid of historical or social context) which serves mainly those who are against brain diversity and are anti-disability. In other words it (unwittingly I believe) plays into the hands of those eugenicist in spirit. This may seem exaggerated, yet it isn’t. Read on and you will see how John himself leads us to this question in his own concluding chapter.
So, I am tempted to say that Switched On, might as well have been written on a red rag (I’m thinking autism cure lobby as the bull here) and leave it there. I note how few commentators there have been for this work to date – it is indeed tempting to put it aside and move on. Yet I feel I must go on because this is a subject too important for cursory dismissal. Also because John himself is a powerful voice within a wider cultural sphere of influence that accepts, assimilates and disseminates autism cure as valid and moral.
My first point though is that I am grateful to John for his helpful responses to my comments on both FaceBook and Twitter. In the autism world many feel beleaguered and at war, for the reasons I describe above. I feel it is important to express difference, sometimes anger (it is often a useful tool), but mainly I want to show respect to the multiple opinions I encounter. I know that for most autistic people life has contained much struggle, especially to obtain dignity and to be heard. It’s in the latter spirit of respect that I try to proceed. Nonetheless my perspective is radically opposed to John’s and it will be important to write with clarity about this and that it be understood that my piece is in no way a personal attack.
John Elder Robison’s dust jacket for, Switched On, claims he is,
“…a world recognised authority on life with autism…”
Recognition (and by whom) is one thing, but if we are being honest it is more accurate to say that John is an authority on his own life with autism (and those he has encountered ). We are, after all, in a groundbreaking era in which we begin to understand (and hopefully acknowledge) that it takes all kinds of autistics to make a world. More specifically, John Elder Robison is absolutely not speaking for me and my autism in this book. Many autistics I know would agree.
As an autistic I’m duty bound to respect John’s self-advocacy, and also his right to undertake whatever brain experiment he choses for himself. The problem occurs, as I suggest above, because in spite of his disclaimers, his blogs and now this publication will function as promulgation of a cure for autism. My note in the margin on reading about his immediate blogging right after the TMS began – which created an influx of volunteers for the protocol – reads, “unethical to blog so early”. I believe that on this count he has been sincere in his enthusiasm but hopelessly naive about the response to his findings.
Throughout this book I hear a conflicted voice, and I hear confusion. There’s an important reason for this. I fear that John Elder Robison does not like his autistic self (though there are many pages devoted to his accomplishments) causing him to stumble somewhat in making his way through the moral complexities of the subject effectively. Sentences meander this way and that – an attempt to tease out ethics I know – but ultimately his enthusiasm for the science always wins. The chimera of autism cure is too powerful for him to resist.
So although he talks nuance and advocates caution (for children – in case we miss their exceptionality), we know that the cure lobby will be unlikely to listen – and why would they listen to such a muffled voice? But they should listen and listen hard. Not least because I wonder if John is even (strictly speaking) talking about autism in this account?
John has alexithymia. A co-condition for some autistics and also present in non-autistics, alexithymia is defined as the inability to recognise emotions in both oneself and in others. This is not a diagnostic criteria for autism, yet this appears to be at the core of John’s TMS experiment in both focus and effect. Some of us are empaths and don’t need our emotions to be switched on. (Since writing this piece I have also been appraised that this may also be true in alexithymia, which is not in itself an absence of emotion but rather a difficulty in identifying, and articulation of emotion).
This should give pause for thought, as some of the most traumatic experiences for John in his TMS journey involved over intense emotional responses to ordinary levels of emotional stimuli. We could speculate that John experienced what it is to be an empath having lost elements of the so-called “protective” functions of alexithymia (as the lead researcher suggests). This was both exhilarating for him (producing joyful connection and hallucinations) and debilitating to an almost fatal degree. I’ve called this piece, A Shot in the Dark, for it’s dual meaning. On page 221 we learn that,
“ I think suicide was an impulse that snuck up on me when I was overcome by what felt like never-ending psychic pain. In one of those moments I came an inch from shooting myself on my back deck, but at the last second I turned away.”
Suicidal ideation beset John on several occasions. Why these brushes with death – a direct result of TMS reshaping his emotional landscape (and I would say the loss of his internal compass) – are buried thus in the latter stages of the book is a mystery to me. Shouldn’t this be the first thing you learn about TMS? It’s just one (important) example of how this type of autobiographical account hinging on chronology of fact rather than salience of point can prove unhelpful to rational analysis.
A Shot in the Dark, also refers to page after page of John’s theorising conversations with Dr. Alvaro Pascual-Leone (the TMS specialist and research lead). It is clear that the experiment (previously carried out on lab animals) was in all senses a leap of faith, an encounter with the unknown whose outcomes could have been negative and distressing (and indeed often were). On many occasions I wrote “clueless” in the margin indicating that Dr Pascual-Leone simply didn’t know why John responded to the treatment the way he did. John’s speculations are literally shots in the dark, and in my view weaken both the narrative and the science with multiple rabbit holes.
At one point, John raises the issue of emotional support as a necessary adjunct to TMS with Dr Pascual-Leone. But, Alvaro (as he becomes) explains that this would ruin the experiment’s results. You wouldn’t know which intervention had produced what results. Right. Again this is information is served chronologically and we don’t hear how John’s suicidal vulnerability impacts on the science protocol. This is something I should like to know about.
Another observation is that John received an incredible (and most probably clinically significant) amount of input from the research team. John was valued both as subject and for his opinions. The team shared knowledge and supported his autistic style of processing the experience (to become expert). TMS became a compelling interest for John allowing him to develop a new range of topics, relationships and opportunities through which to be valued (such as his role in advising on research). We know that validating collegial style friendships, and supportive environments in which autistic people are valued for their particular skill sets can be powerfully enabling and connecting. Which is kind of my point in writing this piece. There was a powerful social change in John’s life as a result of the protocol.
John is clearly a hugely intelligent and capable man, able to demonstrate the power of autistic learning styles (often autodidactic) and thus an attractive role model for parents and young people alike. It therefore saddened me at almost every turn to read his views about autistic people (only marginally modified in his postscript). John demonstrates what can be termed internalised ableism. This can and does happen (it is a powerfully prevalent social value/norm embedded in many cultures) creating havoc with self-esteem. I felt that John was only able to value the exceptionality of autism and not think positively about disability.
The reason being that he has allied himself to the medical model of disability, side-stepping social models almost entirely in this book. Therefore the underlying philosophy with which he advocates is not only one-sided, it’s also ableist. Lodging disability in the individual, naturally places responsibility for change at this level. John also continually practices a disturbing two tier system of human value.
“After fifty years I’d come to accept my lot in life, but now that I saw a chance to leave second-class citizenship behind I was going to grab it.” p10
Ouch. Equality anyone?
Talk is always binary – disability pitches against exceptionality at each and every mention. To be fair John advocates caution about treatment for children, and is aware of the dangers for adults too, particularly when he speculates on the possibility of using TMS in combination with advances in MRI imaging which might help to target areas of the brain and deploy seemingly mind reading capabilities with which to better our brains (George Orwell country, to be sure). But I was stopped in my tracks at the most sinister of allusions, which unmasked the issue at the core of TMS and autism, pretty much like the curtain lifting scene in The Wizard of Oz. I will return to this below.
John is clearly excited by what appears to be at the forefront of scientific development in neuroscience. How a book published in 2016 by such a man then seemingly ignores the seismic developments in our conceptualising about autism from the thought pioneers in the field is another mystery. You only have to read the transcript of Steve Silberman’s recent UN keynote address on autism to understand how at odds this truly is. It’s as though the social context is irrelevant to questions of scientific research when indeed it is key. Any considerations of social justice, and of valuing all human life as equal are essentially absent from Switched On, instead we feel the icy shadow of normalisation fall as the book closes.
I noted that among the devastating effects of TMS, John conversely found resolution and redemption through relationship. A relationship he determines was made possible through the beneficial effects of TMS (kickstarted by treatment but truly worked on by John himself). No doubt John’s third wife has a talent for relationship of a certain kind. Such people do exist – I know several. I do not believe that Maripat’s healing effects on John’s extended yet fractured family can be attributed to his TMS. That the effects of TMS made John ready for a new kind of relationship is also a loaded question – how much the social effects of undergoing the protocol influenced this too will probably never be known.
It is perhaps more accurate to say that undergoing the TMS protocol in it’s entirety (also as an intense social experience) has wrought the changes he’s keen to publicise. Will I be alone in feeling uncomfortable with the chapters about John’s personal relationships? Relevant to an account of relatedness as they may be it must also be remembered that they are by nature highly subjective. Fair play, this is personal account but I feel John goes beyond remit with his expert advocate hat on. I don’t feel you can have this both ways.
I also dislike the hierarchical position given in this account to neurotypical relatedness as primary and more satisfying. This is in itself could be the subject for an entire blog post.
More importantly for the question of TMS, in the later sections we meet a young man called Nick whose TMS proved painful on administration (he asked for treatment to be stopped) yet it produced some notable results for a period of time. To cut a long story short, he became seemingly more recognisably neurotypical, and his delighted parents brought him in for more treatments. Subsequently he “regressed” and refused further TMS. His mother has however founded an non-profit organisation to fund research into autism and TMS.
Here we brush up against the very autism war I refer to in my first paragraphs – sometimes characterised as a battle between parental perception and autistic autonomy. I believe it is more properly described as a rights based issue and a question of autistic identity. Furthermore, while emotional intelligence, as described on page 270, continues to be defined in neurotypical terms (as John so clearly does) our autistic brains remain in danger of the cure myth and the battles continue.
But of course it is all far more sinister than this. In discussing the ethics of brain imaging and TMS in combination, John reveals the deadly nub of the problem, a la Wizard of Oz.
“A hundred years ago we imagined the prospect of improved humanity through eugenics, breeding the supermen of tomorrow. Soon brain imaging and stimulation may offer us the ability to make ourselves into those supermen. But what will be the price.”
My distress on reading Switched On, is increased because it feels like something of an own goal. Zapping our plastic brains into normality or even optimal exceptionality is simply not a future we should be contemplating. The potential for violation of neurodiverse individuals is clearly right there.
I have found it extraordinary the lengths to which John has been willing to go to change himself and achieve what he believes to be superior connectedness. On his second TMS stimulation his then wife Martha accompanied him as an observer.
“Martha said my face had twisted with every pop of the coil, but the thing that most disturbed her was my strange expression.” p87
“This time I had to clench my jaw to keep my teeth from clattering together, which was somewhat uncomfortable.” p90
I have written in the margin, “this is truly horrible.” I believe that it is.
Inevitability (which John contends re TMS) is no argument. Inevitability as justification is simply a moral bypass. My contention in full is simple. Why should autistic people be made to believe they must alter their brains (by whatever means) when autistic brains are not the problem. By the by (and no offence) there are many disadvantages to neurotypicality if we’re going there. Social solutions to the lack of parity and respect shown to autistic people are what’s required. A shift in paradigm is needed and this takes time. The first step is, I believe, self acceptance (and self-love) for autistics rather than the particular brand of low self-esteem that treatment options like TMS would appear to represent.
There are very many way to achieve connectedness and to value alternative forms of being connected. There are also many ways to achieve change.
In conclusion. I think this is an important book – but probably for the wrong reasons. Some may find it either painful or annoying, others I’m afraid will find it inspiring. It is interesting. Mainly it’s an important read for anyone concerned with ensuring the future of brain diversity. I found the book both revealing and troubling about what the future may hold for subsequent generations. As John himself has said, TMS is not a free ride.
18 thoughts on “A Shot in the Dark. Autism and TMS.”
Reblogged this on bunnyhopscotch and commented:
Sonia once again enunciates so clearly the thoughts in my mind that I cannot right now find words to convey.
“As an autistic I’m duty bound to respect John’s self-advocacy, and also his right to undertake whatever brain experiment he choses for himself. The problem occurs, as I suggest above, because in spite of his disclaimers, his blogs and now this publication will function as promulgation of a cure for autism. My note in the margin on reading about his immediate blogging right after the TMS began – which created an influx of volunteers for the protocol – reads, “unethical to blog so early”. I believe that on this count he has been sincere in his enthusiasm but hopelessly naive about the response to his findings.” – Sonia Boue
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Thank you for the thoughtful review of SWITCHED ON.
I do cringe at how some of the statements you pulled from the book appear. The hard thing is that I described my feelings at the time. And six years ago I absolutely DID feel like a second-class citizen. I had a lifetime of polite (and impolite) exclusion. My mid life diagnosis did give me a non-judgmental explanation for my difference but that alone did not lead to acceptance.
The experiences in the book happened before I discovered neurodiversity advocacy as I know it today, and before I began to speak out so strongly for the acceptance and equality you rightly describe as the goal for many of us.
The John Robison who entered the study and the person who engages you today are rather different people in many ways.
Just this past weekend I had a conversation with Stony Brook psychologist Matt Lerner, and we talked about alexithymia in people like me, and you are right other autistics are different. But again, that was unknown to me when I went into the study.
I get the sense that my chronological presentation was frustrating for you.
Like you, I am concerned that some parents will see this as a cure for their kids. If you’ve followed my interviews you see that I clarify this at every opportunity. For example, Brian Lehrer had me on his show to talk about “my cure for autism” and I started out making clear that TMS was never meant to be a “cure for autism” either by the scientists or me.
At the same time, I think it important to start the ethical conversation now, because no matter how we may feel about therapies like TMS, they ARE coming to our community and in some respects are already here.
In much of the world TMS is currently available as a prescription therapy for depression and anxiety. One thing I found interesting is that you can find experiences similar to whose I describe in numerous patient narratives in the TMS depression forums. I don’t see a lot of ethical challenge to TMS to treat those conditions, perhaps because they are widely believed to cause considerable suffering.
And of course many autistic people are impacted by both depression and anxiety.
My study seems more controversial because it was aimed at changing a pattern of thinking, in hopes of increasing social success. That comes across rather differently from relieving the suffering of depression, but when I considered joining the study, I felt that I had suffered quite a lot by countless failed social interactions, and I felt that a tool that might reduce that failure rate would relieve some of that suffering.
Do you feel that I am unusual in that regard? I suspect there are a good many autistic people who would wish for better ability to connect emotionally, even as we may also believe in equality, acceptance, etc. Can we not want both?
I don’t touch on this at length but TMS is also coming for epilepsy, where it has the prospect of being life saving, and treatment of intellectual disability, where it may effectively raise intelligence by shifting plasticity in certain areas of the brain. That has massive ethical implications.
Another thing I touch on in the book is the idea that TMS could be provided by anyone in principle, and I call for oversight and caution. I hope people hear that message. The do-it-yourself brain stimulators you can buy today are to me a troubling example of that. They are not TMS but TdcS, a related but different technology.
Six years later, I think the experiences of TMS were indeed transformational for me. I don’t have that broken feeling I had when I joined the study, and I think that gain is largely a result of what I learned on this journey
John Elder Robison
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“I suspect there are a good many autistic people who would wish for better ability to connect emotionally, even as we may also believe in equality, acceptance, etc. Can we not want both?”
There are a good many non-autistic people who wish for that, too, but we don’t suggest that they need an experimental and potentially damaging brain treatment in order to get it, but rather that they learn to know and accept themselves, recognize their natural strengths and weaknesses, and break habits that lead them into unhealthy relational patterns.
We can want both, but we’re not going to get either as long as treatment of this issue presumes that autistic modes of emotionality and connection are inherently inferior. We won’t have acceptance and equality OR better relationship connectivity if all of that is predicated on “who you really are is broken and inferior.” And that’s where most medical science still is. That we can’t really love or be loved as whole, autistic people.
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Thank you John.
There are many issues on which we differ, but I agree that autistic people are particularly vulnerable to isolation and psychological pain because they are often excluded socially, and misunderstood – the social cruelty I refer to in my piece.
The cost of this to the individual is great. I can see that you were in pain when you opted for TMS. This is why we need advocacy that educates about autism and preaches acceptance and more support for autistic people and families. Not “treatments” based on trying to change the individual.
In the UK by our main national charity the National Autistic Society is on board with this but of course we have a long way to go. Steve Silberman’s incredible contribution through Neurotribes is also key to the changes we need to effect. BUT mostly it must be autistic people who take a lead on this. We have an enormous responsibility to get this right and create a positive message about autism.
We have to think of future generations and of our potential grandchildren and great-grandchildren and what we would want for them. Some of us have absorbed negative messages about being broken. It’s vital we don’t pass this on, but rather help create resilience in our community.
The issue of TMS for depression and autism, and the overlap between conditions is very complex. For depression and TMS we may find less polemic for many reasons. BUT I think the better analogy for autism is with the LGBT struggle. The recognition of autism as culture and identity is missing in Switched On. We have a right to be as we are – fundamentally different – yet equally valued in society.
I get that your comments in the book about being like a second class citizen are an expression of your feeling at the time. The point is that you don’t contextualise it in the book and so it sounds like opinion. The reader can’t be expected to read in anything but the present without signposts in the text that these are views you no longer hold.
I know that you try to tease out the ethics and are concerned – but because you leave out the historical context (aside from your brief allusion to eugenics) and exclude the social model of disability, it sounds like an anxious undertone. The more obvious message is that despite the agony you went through you feel you came out more socially able. This is what will be seized on.
I think you have a huge responsibility in publishing this work. We do want more opportunity and connection for autistic people and for this we need more equality. These are not mutually exclusive – you are right there. BUT TMS feeds a cure mentality and as such it works against the struggle we face for equality.
I appreciate the opportunity to talk some of this through.
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I’d add that alexithymia isn’t only an unawareness or lack of access to emotion in oneself or others–it can also manifest as inability to identify, verbalize, or match words to emotions. But emotional capacity and expression is still there, often very intensely, just not in ways that are easy for observers to understand. That’s what I’ve got…and the damage that might be incurred by someone who’s pressured into this treatment by parents or therapists who don’t understand what they are seeing, is one of the most frightening prospects of TMS being seen as a potential treatment or therapy for autism to me.
It’s just a pervasive theme of autistic history that non-autistic people, unable to understand our natural modes of expression, assume that we’re unfeeling or imperceptive when in fact we’re intensely feeling and over-perceptive.
Also, the results experienced by both John and Nick would be utterly predictable to anyone who understands autism as the configuration of dramatic trade-offs in cognitive resources, abilities, or bandwidth that many of us believe it to be. To allocate cognitive resources into an entirely new mode of functioning, we lose something. We don’t get to choose what. The breakdowns suffered by many, many autistic people in mid-life testify to the damage we can do ourselves in trying to reshape ourselves into people we aren’t, with abilities we can’t sustain.
But most people don’t believe that autistic strengths are even real, let alone worth not destroying for their own sake.
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Thank you Chavisory for that helpful addition on alexithymia. It’s something I’m new to, and glad of more information. Your further comments as ever help my thinking.
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I score very high on the Toronto Alexithymia Scale – but the reason seems to be that I am blocking emotional content, not “not experiencing” it. I am a person who experiences sensory overload and a very high level of empathy toward people’s pain, and to protect my sanity have erected a lot of barriers / filters to screen out such input.
I am aware of it; my son has pointed out that I understand emotions, both mine and those of my family, it just takes me longer to process them. He would see someone crying and understand immediately; I might not realize they are sad for several minutes, or even several hours or days. This is not because I can’t or don’t sense them but rather that I have, over the years, developed effective filters so I’m not getting them sprayed at me like a fire hose or power washer.
I am much like chavisory in that respect. And, as for the quote
“The breakdowns suffered by many, many autistic people in mid-life testify to the damage we can do ourselves in trying to reshape ourselves into people we aren’t, with abilities we can’t sustain”
– well, I’ve hit that point after 50+ years. I feel like I just can’t do anymore. I just want to quit, and I think I’m surviving out of habit, not because there’s something I want to do. That is a devastating feeling.
Still, life is stubborn, and there are some things I want to do; finding the energy and confidence to do them is not possible today. Maybe tomorrow.
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It is important to note that published studies of the effect of TMS do not conclusively show any benefit. This is clearly a powerful intervention, but without predictable or repeatable outcomes. A good source of updated reviews are published by the Cochrane Library at http://www.cochrane.org/CD003493/DEPRESSN_transcranial-magnetic-stimulation-tms-for-depression
(A list of related TMS studies appears at the bottom of the page and the brief summary of each is in the grey box “authors’ conclusions” – TMS is not yet shown effective for any disorder).
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Thank you Stuart!
Hi Stuart 🙂
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Great video, a lot that needs saying. It is as you say “playing with someone’s brain” – the outcome in this one personal narrative was not predicted and is almost certainly not repeatable. No clinical trials have yet demonstrates any reliable, repeatable benefits from TMS for any condition.
Back in the 19th and early 20th centuries it was the magic of electricity (http://electrotherapymuseum.com), which unregulated experts promised would cure everything from baldness through impotence to madness. Will a TMS exhibit feature in the museum in the future?
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You’ve given me the words I’ve been struggling to find Stuart. One narrative account…exactly right. My preference to this would be to see the results of the experimental protocol John undertook.
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I just read this after I wrote my own response to a particularly ham-handed article on this subject in New York Magazine. I am alexithymic and felt pure terror after reading the piece (the article, not your well-written review here) – I think you sum up my reservations better than I did, with one minor caveat: alexithymia is not the ABSENCE of feeling. It is the absence of sufficient verbal DESCRIPTORS for feeling. Please forgive me if I read this wrong, but you at one point said that some “of us are empaths” and didn’t need ‘switching on.’ I’m alexithymic but would consider myself extremely empathetic – once I’m apprised of the emotion in the room, so to speak.
That aside, I think this was a very well written piece – it accurately explained my fears that one day I will be forced to undergo such treatment to “normalize” me. I do not need to be “normal.” Society needs to be more inclusive. There’s a reason I have not watched A Clockwork Orange since I was a teen!
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Thank you CC – I have added to the paragraph on aleximythia in parenthesis – several people have also commented on this. I freely admit it is a subject I know nothing about and that it is clearly a very complex area of experience. I have simply put that the same can also be true of aleximythics re not needing to be switched on. Many thanks for reading and for your enlightening comments.
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