Wednesday, August 10, 2016

Thoughts from John Elder Robison's "Switched On" Book re: his rTMS (repetitive Transcranial Magnetic Stimulation) Experiences

John Elder Robison (prominent adult ASD Advocate) wrote a Book earlier this Year called "Switched On" (www.amazon.com/Switched-Memoir-Change-Emotional-Awakening/dp/0812996895) regarding his Experiences from the rTMS Trials @ the Beth Israel Deaconess Medical Centre (Boston, Massachusetts) in 2008.

I was very privileged to take Part in the initial ASD rTMS Trial @ Monash Alfred Psychiatry Research Centre (MAPRC) in November 2010, and was therefore very interested to read a more detailed Account from John.

My old Blog Posts about my rTMS Experiences are below:
http://aamsio.blogspot.com.au/2011/07/my-experience-from-repetitive.html
http://aamsio.blogspot.com.au/2011/07/my-experience-from-repetitive_30.html

Recent ABC Coverage on rTMS:
http://www.abc.net.au/radionational/programs/lifematters/john-elder-robison:-switched-on/7322548
www.abc.net.au/radionational/programs/lifematters/transcranial-magnetic-stimulation-explained/7330468

I'm very grateful that Dr. Peter Enticott (of MAPRC) notified me about the Book, and I emailed him my initial Thoughts after reading John's Book, as attached below in raw un-edited (and "binge-typed") Form. I'm sure there are some other Thoughts / Opinions missing, but I might add them on into a future Blog Entry after reading it for the second Time during Annual Leave later on.
-----------------------

I ordered a Copy of "Switched On" and read it about a Month ago, and very glad I read it. but didn't have Time to reply. I'll send you another Email after reading it the second Time during my Annual Leave later on, if there's Points that I forgot to include below.

I found it very painful (emotionally) to read @ Times, coz some of it reminisced with my Sentiments and Experiences.

I think his Account of his TMS Experiences were very well-written, and will provide much Discussion re: future Treatments for ASD Adults.

I feel like John Elder Robison gained a Lot more distinct Changes following the TMS, and he was able to present the Advantages and Disadvantages of becoming more emotionally labile and intuitive to other People's Feelings. It's like a Blindfold was temporarily removed from him, but since the Release, he won't be able to forget it. His Awareness has increased and provided more Stress, but also more Opportunities/Options to respond in Order to achieve a Resolution.
- I briefly felt very embarrassed when I read about his previous "social Faux Pas" coz I have done plenty prior to becoming more Aware post-Diagnosis.

And I could understand his Thoughts where he flips between seeing his AS as a Gift or a Curse. I did find it upsetting/painful when @ some Point he saw himself as "defective", probably coz it's Something I think about on a daily Basis @ Work. I feel like I have to use my Strengths (eg Attention to Detail and Hyperfocus) to (over)-compensate for my other Deficits in clinical Medicine. It's worked so far, but @ great mental Expense, which is why I'm trying to get into the Pathology Training Program ASAP (with minimal Patient Contact etc).

I can relate to John's "Release" by being able to tolerate Eye Contact after TMS, coz it always felt uncomfortable prior. So now, I know what it's like to look @ People in the Eye without flinching, and this has improved my "Ability" to "appropriately" communicate with Patients, other Hospital Staff, and People outside of Work.

The other Things that John Discusses re: understanding People's Feelings and reading facial Expressions is Something that I learnt manually from rote-Memorization and Experiences. I still have flat Affect most of the Time (not depressed), and I only naturally change facial Expression when I'm euphoric / very upset / very angry.

I think what makes Part of it painful is how both me and him are in the Minority of ASD Adults who have been privileged to receive some Form of Assistance / "Treatment", and even afterwards we are still having to work hard to maintain our Livelihoods coz we're in the statistical Minority, and Adult Society is currently unlikely to provide much Accommodations. There's so many other ASD Adults (diagnosed and undiagnosed) who are struggling with Employment / Bullying etc.
Another Thing which I found painful was as John Recounts his Experiences, I also looked back and saw how many wasted Opportunities I had, and all the Mistakes I made pre-Diagnosis. But Past is Past, you can only learn from those Experiences and move forward.

I still make Mistakes post-Diagnosis, but I'm very self-critical, and I think it contributes to my low self-Esteem post-Diagnosis, coz I know how vulnerable I am, and how Others (in and outside Medicine) could easily exploit me if they knew my Weaknesses. I don't feel Shame coz this was how I was born, and sometimes I wonder whether Life is worth Living, but I look @ how many Hurdles I've jumped over so far, and even if I "fall down" later on, I can still act as a Source of Inspiration for some ASD People.

A Point of Interest would be whether John's Experiences will influence the Direction that ASD Research takes as he is on the Autism Speaks Panel, eg towards Something more socially-oriented, rather than Something to improve short-Term / Working Memory or Verbal Fluency etc. Certainly the frontal Lobes are implicated in ASD / ADHD, so these Functions are inter-related, but I feel there's a Risk of Bias.

I think for John, his TMS Experience seems so intense, like "getting thrown into the deep End of the Pool", mystical and profound, almost psychadelic, but it came @ the Expense of making his "Ego" more prominent. Not in the "arrogant" Sense, but the improved Awareness of himself and other People seemed very difficult to take in @ the Time, but he was able to cope eventually.
- A Bit like how in the Bible, Adam and Eve ate the "Fruit of Knowledge" and suddenly realized they were naked.
- Once you see it, you can't "un-see" it.

Whereas for me, I was like "dipping my Feet into the Wading Pool". Concretely / Directly, I only benefited from improved Eye Contact, but it served as a Catalyst for understanding other Neurotypicals in general coz I can spend more Time looking @ their facial Expressions, processing their Speech and direct / implied Meanings, and less Time thinking about how I'm uncomfortable with their Eye Contact. I'm still very flat and "Swiss" although there have been Occasions where I'm close to breaking down emotionally.

I also resonate with John about the constant Anxiety about whether TMS or becoming more "socially aware" will impair one our special Interests and ASD-related Strengths.

For me, even after reading his Book, I wonder if the Reason why I have my Ambitions, Strengths and Special Interests (Mahjong, Accordion) is coz of my Deficits. For me, interacting with NTs in general costs more than it benefits, and while there are general Rules of Behaviour, there's still significant Heterogeneity. Whereas with a Board Game or learning a musical Instrument, the Rules are much stricter and clear-cut, and the Gains are easier achieve and therefore more rapidly gratifying.
- Temple Grandin's Comment @ the Back of the Book totally hit how I felt:

"Switched On is a mind-blowing book that will force you to ask deep questions about what is important in life. Would normalizing the brains of those who think differently reduce their motivation for great achievement?"
---
In short, I've enjoyed reading John's TMS Account (as demonstrated by finishing the Book within 2 Days) to see how his Experiences and Opinions were similar / different to mine.

I think TMS has much Potential to help ASD Adults / Children, but it must be done in a Way to avoid totally converting them to NTs (not that it's possible with the current Technology anyway), and hopefully there'll be a Way to help preserve their Strengths whilst reducing their Weaknesses. I don't think it's a Zero-Sum Issue, but unfortunately I suspect this won't be 100% possible.
I think for ASD People, the possible Goals of TMS are very variable depending on Level of Function.

I do think that for non-verbal ASD Children / Adults, the core Goal of TMS should be to facilitate Speech Development coz that's crucial for independent Living, regardless of whether you have Friends or not.

Also, what I think can be done now is to help educate ASD Adults on how to "respond appropriately" if they happen to recognize a facial Expression or Feeling in another Person. So that Way, an ASD Adult who becomes more self-aware of others (via TMS or gradual Knowledge Acquisition) can feel less anxious / awkward about how to react, and just say what "needs to be said".