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.
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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?"

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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".

Paediatrics (Part 3/5, RETROSPECTIVE POST)

"Max" (ADHD): My most favourite interaction in Paediatrics was with an ADHD Child called “Max” (not his real Name).  When I opened the door, the first thing Max said to me was “Are you Somalian?” in which I said that I wasn't, without getting offended at all. Whilst the Paediatrician was talking to the Mother about Max's Medication regime, I tried to engage with him by asking him about school and his interests which included video games. I tried to ask questions about his favourite video games but soon exhausted my “Repertoire”. He quickly got bored and proceeded to play with a few styrofoam Cups.

I tried to engage him again by making up a little game where he had to stack the cups in various configurations of progressively increasing difficulty. Every time he successfully made a cup tower, I said “Well Done!”, and he called for his Mother's Attention for similar Praise. Eventually he reached a ceiling point of his ability, so to prevent him from feeling really bored again, I decided to show him how to make “Cup Wheels” by connecting two smaller Cup Ends together with Cellophane Tape, so they can roll on a flat surface smoothly. He got really excited about this novel invention and kept rolling the Cup Wheels down a slanted surface, and then decided that he could make a Cup Tower, so the Cup Wheels could smash into it, with the Cups spreading across the table. The stimulation was enough to sustain him for a few more minutes but soon he got bored again.

I tried asking about his interests, but surprisingly he remembered our conversation and said “You already asked that.” He then ran outside of the room and I went after him. He wanted to urinate but didn't want to use the normal Toilets, preferring to urinate outside. I asked if he wanted to wash his hands, but he didn't, saying that it's “yucky”, which I suspected was a sensory issue relating to water. He then wanted to race me back to the Outpatients room, and I agreed. I outpaced him and reached the room first, but he falsely accused me of having a Headstart.

I really didn't want his hands to contaminate anything else in the room, so I tried to get him to clean his hands with the Debug (an Alcohol / Chlorhexidine Hand Rub) by cleaning my hands with it to set an example. I asked Max if wanted to try catching the Debug while I squirted it like a game, and he said “Yes!”, so I kept on squirting it until he “scored” and was happy. But this happiness was shortlived, for the cut in his hand started to burn from the Alcohol, and he was moaning (LOL). By then the Paediatrician was done with the appointment and he had to go.

It turned out that Max didn't get an increase in his Medication as he desired. As the Paediatrician and Max's Mother exited the room, the lights were switched off, and Max was staring at the computer screen, totally silent. I looked at his face and it looked like a mixture of blankness and disappointment. I suspected that it was due to him ruminating over the Medication issue.

I said to him, 
“I know you are thinking about [ Medication ], and that you want more of it, right?” 

Max slowly said,

 “Yes.”

                         
“You didn't get what you want and that can make you sad or angry. Dr. X is the one who gives you the [ Medication ]. If you want a higher dose of [ Medication ], you have to tell him next time, and say why.” 
                          
"Ok."

            I wrote on a scrap piece of paper the Medication, the desired dose, and his reason as a memo for him to use in his next Appointment before leaving the Room and waving Bye Bye.

I was very pleased but drained that I was able to adequately distract Max during the entire appointment so he wouldn't disrupt the Paediatrician's consultation as usual. The Paediatrician said, 

“You did well, but this is one of his good days.” 

“Thanks”, I said. But I wonder how Max would've behaved if I wasn't there to distract him??? : P

Paediatrics (Part 2/5, RETROSPECTIVE POST)

Paediatrics Outpatients was where I became very enthusiastic for the first time in Clinical Medicine. The awesome thing about Outpatients was that we had the opportunity to see Patients on our own, and then present the information to the Paediatricians afterward for further input. The children always came with at least 1 Parent / Guardian. The majority were for Respiratory or GIT complaints (eg Abdo Pain, Constipation), with some presenting for follow-up following Inpatient management several weeks ago.

To be honest, whilst my Clerking wasn't particularly good at the time as I didn't use any shortcuts and was being too methodical in both History and Physical Exam, and writing all the details down (and thus taking too long), I really enjoyed the Consultations. For some reason I found it quite easy at the time to engage both the the child and the parent, something which a senior Paediatrician said was a challenging aspect of the Specialty. I was hypothesizing that it was because I am overly sensitive, and also get distracted easily, it enabled me to “bounce” back and forth between the 2 individuals with little effort. What also facilitated this was that if I had difficulty figuring out what to say next to a parent, I could reduce the “awkwardness” by focusing on the child, and vice versa. Switching to the child was sometimes useful when the parent was being too chatty (which happened frequently).

The best thing was the children (without trying to sound like a Paedophile), I felt I could relate to a lot of them better than the adults. It felt easy for me to talk to the ones who were verbal. The younger ones (especially Pre-Teens) had more concrete thinking which I could relate to (Frontal Lobe underdevelopment). I found it very endearing when one of them asked how they managed to put the Test Tubes (containing Blood) into the computer I was using (in the Outpatient room) in order to obtain the blood results. My basic explanation was that the Test Tubes were being analyzed by a big machine in a lab somewhere else in the hospital, and that the results are recorded by a computer program, which then sends the data electronically to other computers for view. It reminded me of when I was younger and didn't understand how a Fax Machine worked – I used to think that the same piece of paper that got put into a Fax Machine would physically be transported through the thin telephone wires and pop out, to be printed at the receiving end!!!

I could use simpler English (cognitively easier for me) and shorter sentences when speaking to the children without being seen as patronizing. I relished in the fact that I could ask simple questions without pretense like “What is your favourite colour?”, “How old are you?”, “What do you like to play?”, and get straight answers from the Children without being seen as a “loser”, “dickhead”, or “pervert”. The parents also seem pleased that I was engaging with the children and communicating at the same level. Neurologically, I knew that they were less developed than an Adult NT, so I found them much less threatening on the whole, as I perceived them to be cognitively less able of being manipulative and chronically dishonest. This probably increased my confidence which permeated into my behaviour, seemingly despite my poor medical knowledge. I liked how a lot of the NT Children seemed more inquisitive and disinhibited, before they become fully conditioned into their stereotypical, conformist Adult forms. In short, I felt I had more potential to make a positive difference to the Children.

ASD and Getting Bullied - BULLYING IMPACT (Part 5/7)

Getting bullied has lifelong consequences for many people, even more so for ASD people coz of their strong episodic memories. I’ve yet to meet an ASD person (especially Aspies/HFAs) who didn’t get bullied at some point in life. In retrospect, while the bullying incidents were pathetic on the bullies’ part, my impression is that the reduced repository of coping mechanisms at the time in conjunction with less life experience, education and practice of “social frameworks” increases the adverse impact of such incidents.

I feel more level-headed (albeit super cynical) compared to the past, but previous incidents have permanently moulded various aspects of my behaviour and attitudes.

Ever since I was framed and punished for sexual harassment, I interact with females on a much higher guard compared to males, as they can easily “destroy” me. I have to follow intellectualized algorithms (on “appropriate behaviour”) that approximate acceptable NT interactions, and implement extra mechanisms to reduce the risk of subsequent false accusations:

- I’ve very rarely touched females apart from doing so for medical purposes (physical exam) with their consent in the presence of another professional.

- I never hug females unless they initiate it.

- I try to respect their personal space by following proxemics, increasing the physical distance between us (50+ cm) by standing behind a chair or a table when talking to them.

- Any vague answers to my requests are automatically interpreted as “No”/”I don’t want to”/”Stop it”/”I’m not comfortable with this topic”, in which I cease pursuing it lest I aggravate them.

- Never discuss R18+ topics unless you know them very well or they mention it first.

- If they show a frown/angry/suspicious facial expression, ask yourself if you’ve said or done something to offend them within reasonable limits as defined within your database.

So far it’s been somewhat reassuring; I’ve been able to have neutral/positive interactions with many female patients, students and retail staff without complaints. I’ve seen or examined some vaginas and breasts (in Obstetrics/Gynaecology rotation) without getting into trouble. Clearly the absence of complaints following short encounters doesn’t mean they’re my friends, but at least I haven’t done a total blunder. Tbh, a lot of my motivation for interacting with females is to show myself how much improvement I’ve made with regards to complaints as a %age of all interactions with females in a year. In that respect, I treat it as a game, aiming for near-0 complaints within a year.

And this is just the tip of the iceberg; I’ve created other algorithms/rules following other types of bullying and unpleasant interactions (eg being sworn at).

My major concern however is how to respond when I’m bullied for the first time through another mechanism, in which I predict I’ll have to respond by first principles (which I unfortunately haven’t designed yet) and reading other people’s experiences online…

ASD and Getting Bullied - WAYS OF GETTING BULLIED (Part 3/7)

- Intentionally disrupting one’s non-pathological routines.

- Intentionally disrupting one’s preference for sameness not from therapeutic attempts to improve cognitive flexibility (eg hiding favourite objects, constantly changing their positions).

- Intentionally causing sensory overload by making local environment overstimulating (especially audio/visual), constantly staring, touching* or standing/sitting near them --> impairing their work or study (as if there’s a presence of “Qi” that can be detected by the ASD person).

                * Exceptions are hard hugs/grips.

- Harassment (especially homophobia) based on erroneous assumptions about an ASD person’s physical traits (eg gait, possible hypotonia or motor incoordination, notably in childhood), behaviour or “unusual” special interests.

- Stereotyping an ASD person and penalizing without understanding their scattered cognitive profile of strengths, weaknesses and personal compensatory techniques (many of which are intellectualized, especially algorithms for social situations and piecing details to form general concepts).

- Physical abuse

                - Can easily trigger a meltdown + “violent lashing” from an ASD child/teenager, especially if     

                   ganged-up on.

                - Even worse is when they claim that the ASD person started it.

- Verbal abuse

                - Can also trigger a meltdown.

                - Bullies love to see a reaction, and this is more so the case with Aspies/HFA who have better 

                  verbal comprehension.

                - Difficulty in giving a successful impromptu retort --> frustration, humiliation.

- Sexual harassment, coercion (especially female ASD people, initially reduced street-smarts).

- Getting framed for sexual harassment (especially male ASD people, initially reduced street-smarts, overly trusting of others but this quickly converts to cynicism/caution following adverse events).

- Lying, exploitation, blackmail (ASD person has initially reduced abilities to read people and check for situational red-flags).

- Framing an ASD person when they were led to believe that they were doing something harmless. Often paired with bully appearing to be the “innocent victim/bystander”.

- Passive-aggressiveness, and withholding of relevant information to get an ASD person into trouble. Refusal to give details, and intentionally use vague language to make an ASD person confused or doubt their ability, and then claim that the ASD person is being unreasonable or aggressive.

- Spreading rumours about an ASD person who has more difficulty defending it in a “believable” manner to the others, because they’re more inclined to believe the BS-artist, and also his difficulty in figuring out how to convince them due to his statistically reduced TOM.

- Taking credit for an ASD person’s work and presenting it as if it were his own, often in a more charming, fluent manner.

- Wilfully misinterpreting what an ASD person says and responding negatively (especially in front of others), this is often done by over-generalizing what an ASD person says about a topic or targeting a specific bit and going on a tangent, even though he meant it in relation to that specific situation only.