Experimental treatment cost John Elder Robison his marriage

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The NYT article sounds like it was worth it in the long run, once things settled down, although the cost of a marriage and friendships is a very high cost. It sounds a bit like those stories I've heard in which someone goes through a transformative experience, like a near death experience or major illness, or when someone becomes sober, and all the old friends are distressed at the change. (not that I'm comparing Mr. Robison to a person in recovery from alcohol, just that it's that big of a life change) A lot of friends and family are not comfortable with such a huge change--they either learn to adjust, eventually, or become more distant.

Actually GodzillaWoman (what a great name!) the comparison to a person who kicks drugs or alcohol and all his friends change is very apt, and to make things harder, it happened essentially overnight, as opposed to after months of struggle

The NY Times weighs in with this review of the book:
http://www.nytimes.com/2016/03/21/books ... anged.html

Thanks for your thoughts

It seems as if John's reaction to the treatment - a new ability to see emotions in other people - came suddenly, but the experience of a mature adult at handling that knowledge, responding empathetically, but having some boundaries and being able to moderate the emotional response in himself - did not.

These latter are learned skills, and if there is a lesson to be gained from this experience, it is that talk therapy must be offered during and immediately after this type of treatment, to make sense of the world newly perceived.

The book sounds fascinating. I look forward to reading it.

I am glad that John Elder's newest book will be released on Tuesday.

I consider his participation with a TMS research project to be interesting. I accept his description that it worked well for him. While I wouldn't agree to participate similarly (I refuse to participate with autism-related genetic research for the same reasons), I respect those who do.

What I doubt are the apparent conditions on this research at the time and since. Classification might as well be an admission that the research wasn't completely private. So, what was the intended use of such research? The answers to that question might be quite surprising and concerning. I doubt that government research, in any case, is ever meant to be a one-trick pony. Mutiple uses is the name of that game. So, what was intended? Short-term enhancements for military service members (see the 1970s congressional investigations into CIA research and practices)? It seems likely given what we know from the Church and Kennedy committees.

I discussed that treatment with my psych when I was suffering from a psychotic depression & she told me that the treatment didn't really do anything for people

ok i have read some of your posts. I respect that other see it differently but i want a treatment to get rid of aspergers. But just because you or i get rid of your/my asperger doesnt mean that your/my self-development process must not continue. It is important to continue to develop for example self-awareness.

I have no fear to get rid of aspergers. I dont identify myself so much with it... And it is important to know that every human being need self-development, and it is impossible to become perfect, so you have to continue your self-development...

https://www.ted.com/talks/jocelyne_bloc ... anguage=en

As of now, there are no treatments to get rid of Aspergers. There are treatments and coping mechanisms to ease traits/symptoms. There are treatments for the mental illness that often co-occurs with autism.

I notice often when people view there autism as a curse what is often the problems are the co-occurring mental illnesses. If a person is not depressed, anxious, has PTSD etc the Aspergers treatments are going to work a lot better then if they are burdened by co-occurring mental illnesses.

This seems like it might be similar to a procedure that has been used to treat severe Tourette syndrome , only not as invasive . < https://www.tourette.org/research-medical/deep-brain-stimulation/ , https://www.tourettes-action.org.uk/72-dbs.html > As to empathy , I actually tend to feel that many of us have been too attune to others feelings . So our brains shut it down , lest the intensity cause excess trauma . This emotional detachment would be similar to what happens to those with PTSD . < http://www.counselling-directory.org.uk/counsellor-articles/why-do-i-feel-nothing-emptiness-and-borderline-personality , https://www.psychologytoday.com/blog/aspergers-diary/200809/asperger-emotions-and-adult-relationships , https://girlyautism.wordpress.com/2011/05/10/emotional-detachment/ >

My current "notes for the counsellor" include the observation that my own increasing anxiety coincides with an increasing awareness that others are not kidding about being rather stupid and mean.

Two other relevant news stories:

- Electric Currents And An 'Emotional Awakening' For One Man With Autism, NPR, April 21, 2016
- Getting Emotions 'Switched On' After Decades Of Asperger’s, WBUR, March 22, 2016

One thing I notice here is an assumption that autistic people lack awareness of other people's emotions. That's evidently true for some of us, apparently including John Elder Robison before his treatment. But it is now more widely known that many people diagnosed with autism have the opposite problem: too much awareness of other people's emotions, and being overwhelmed by same. And it appears to me that the treatment may have caused John Elder Robison to go (temporarily, at least) from one extreme to the opposite extreme.

Also, there's a lot more to autism than just the degree of one's emotional awareness. So, it seems to me incorrect to think of this treatment as a potential "cure" for autism.

Yes, I had the exact same thought reading through the above thread. I experience excess emotion from others, but don't process it well. If someone is feeling negative emotion, I feel overwhelmed by negative emotion to the point I can't do anything helpful for them. Also I'm not good at processing the why.

Definitely feeling others' emotions isn't curing autism. It's the most torturous aspect of mine, but then I can understand why if someone had the opposite experience they might be desperate to experience others' emotions.

Coincidentally, I'm reading his book Look Me In The Eye which I'm finding interesting. I watched an interview of Robison on YouTube about his TMS treatment. I believe he said the results were temporary?

Is there something wrong with me? I have no deep desire to learn how to read people. I know that I lack in that area. I know that I always have. Why don't I care? Rather than yearn to be adept at understanding non-verbal communication, I hope that people will say what they mean and mean what they say more often.

There are hearing impaired people who don't wish to hear and I see that as a personal choice.

Last edited by Magna on 22 Jul 2019, 8:38 pm, edited 1 time in total.

I completely relate. I think part of the reason I don't care is cuz I kinda accepted that I have my various autism issues & while I know I do have lots of problems I also think one of my biggest problems is that the world isn't made for me. I guess in a way I see others as f#cked up for not trying to understand me.

I think the whole thing is more about either a type of social-emotional delay or a type of executive function and alexithymia than autism.


My own version of 'switched on' is very different.


Being aware of emotions of self and others -- it's just as useless in certain sense other than just being aware and knowing.
It is useless to be aware of your emotions and still cannot control them or use them.
It is also useless to be aware of what others feel as it not only possibly overwhelm you and cause more tension, it also doesn't give away what you should do about it nor grant you a bigger picture of the social situation.

It's almost no different from any another sensory thing you have to deal with. Be it sensitive or insensitive -- lacking the awareness and the ability to distinguish between the subtleties of sensory stimulus or not -- this is just another thing to deal with.
This also means it occupies certain mental spaces and processing, awareness or no.

It's just another puzzle pieces.
It just became more colorful or plentiful it certain perspectives -- yet still there are no frames to put together the rest of the pieces to.
I want the 'frame' not more 'pieces' nor make the pieces more vivid because I already had sufficient of these just cannot assemble them properly.