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".

Panel Interview– Asperger Students’ High School Experiences and Successful Transition to University (PART 1)

Long time no post!

I (Ken) and 2 other university students Andrew and Rose (who both also have Asperger Syndrome) formed a panel that was being asked a variety of questions by teachers at a professional development conference regarding our high school experiences, our AS, bullying, and how we managed to successfully make the transition to university/college.

I recorded the entire interview and have typed out the whole transcript below as best as I can.

Many of the terms used in the interview are related to VCE (Victorian Certificate of Education), the credential that is given to students in the state of Victoria who successfully complete Year 11 and 12 of high school.

Don’t worry if you’re not Australian or if you don’t understand these terms, there’s plenty of other content (especially from Andrew and Rose) that are very insightful and interesting to both ASD students and high school teachers.

I’ll break this interview into several parts coz the whole interview is just over 1 hour long, so when typed up there’s gonna be a lot of text.

Here goes…

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Teacher: Ken, could you give us a little information about yourself and your background, and what you’re doing now?

Ken: I’m Ken, I’m 21 and I’m studying Medicine at Melbourne Uni. I was born in Australia but I lived overseas for my primary school years then I came back to Australia in the late 90’s. I was in a public school for lower secondary, and then I got a scholarship to a private school for upper secondary where I did my VCE. I did Biomed for a short while before I entered Medicine, so that’s where I am, yeah.

Teacher: Ken, could you tell us a bit about what was helpful for you in secondary school and what you found unhelpful?

Ken: Ok I went to 2 secondary schools. The public school I went to was relatively unhelpful, but the private school I went to afterwards was very helpful. And I was actually diagnosed with Asperger Syndrome this year, so at the time I was in high school, I didn’t even know I had it though I knew I had a lot of social difficulties.

So the things that didn’t help was, um, my favourite subject is Maths, and I like Science subjects. I didn’t feel challenged in my public school coz the teacher, he gave me the same homework as other people and I felt very bored, and I couldn’t be bothered doing it coz I didn’t feel stimulated. I asked him to give me harder stuff, but he just didn’t give it to me. Maybe they were really busy, I dunno, but I just wasn’t challenged.

But at my private school, they had an accelerated learning class. I did Methods 3/4 when I was in Year 11 so we got taught stuff a lot quicker. The teachers there were very good. Also there was a strict anti-bullying policy, where anybody who got caught bullying other students multiple times got suspended, and if they get suspended too many times, they actually get expelled. Also I think being a private school played a factor into that because if they kept on having bullies at the private school, it would actually give the school a bad name, affecting the school’s reputation.

Also when I was in high school, I know that even though the diagnosis of Asperger Syndrome existed since 1994, they didn’t really talk about it 10 years ago. The teachers in my state school thought I was “anal”, “selfish”, a “square”. Like they didn’t know I had an ASD, they were like “Oh, why doesn’t he fit in like everyone else?” “Why doesn’t he talk like everyone else?” “There must be something wrong with him, he must be a bad person”. Like “Oh it’s your fault for getting bullied coz you’re different”, and I don’t think people should be bullied for things that they didn’t choose.

And of course for people with Aspergers, they lack social intuition. And they have trouble knowing how other people think and feel automatically, so they have to manually think about it. And I was, like 10 years ago, I was caring more about school, like I didn’t really care about talking to people. I was actually zoning out when I wasn’t thinking about school, I was hyperfocusing on other things. I was also hyperfocusing on my subjects and I didn’t care about the social situations, and they didn’t cater to my abilities.

Teacher: Well I’ll have to stop you there as I can see a lot of nodding from your other 2 colleagues. Um Rose, Andrew, would you like to give any more comments about that?

Andrew: Absolutely, I can definitely relate to the bullying stuff.

Teacher: Well would you like to tell us a bit about your background first Andrew and then move on to the bullying?

Andrew: Well I was diagnosed in 2003, seems like ages ago now, but yeah that was when I was 12. I started off in a public state school but then moved to a private school. The private school, while it had some great things about it, it was a Christian school, and I have to say there was a perception amongst a lot of the staff there that because we’re all Christian and we love and care for each other in the name of Jesus, it means that bullying doesn’t exist, and we don’t have to deal with bullying.

And you know that it’s something to be very wary of because I was bullied for 7 years in primary school, and in Year 6 I ended up in hospital for 6 months with a nervous breakdown, anxiety and depression. I had tests for everything from epilepsy to brain tumours, which wasn’t fun. Um, it took all that time just to reveal that I had Autism, so having to go through all of that just to be told you have Autism isn’t something I wish upon anyone.

In Year 7, I moved to a different school where I had a fantastic support team who helped me very, very closely, including the wonderful Special Education. I was also involved in a mentoring program that I’ll talk about later, but I can definitely relate to what you say about people saying it’s your fault for being bullied you know. I can definitely remember speaking to teachers about it in primary school, and then them telling me that it was my job to do something about it, and that I had to be proactive. Of course I had no idea how to be proactive, and that just made it worse. So I think that’s a really important thing to take note of.

But yeah I’m now studying at the Australian Catholic University, I’m studying a Bachelor of Music, majoring in Musicology and Piano Performance, and I’m training to be a concert pianist and a music lecturer, so that’s really exciting.

Teacher: Rose, your turn to go.

Rose: Well um, I’m probably one of the rarest of the rare, a female on the Autism Spectrum. Like him, I was at a Catholic primary school, and they didn’t really have a bullying policy. I’m a bit older than the rest of them, so when he was diagnosed at 12 in 2003, I was 17 and diagnosed in 2004.

So, um the primary school I was at, this was in the early 90’s, the diagnosis was only just being invented and I hadn’t been diagnosed yet, the school didn’t have a terribly effective bullying policy at all. And we truly had some slightly insane children at that school, some who ended up in a juvenile hall. So in regards to that, so I’m not going to blame them terribly for not being able to manage the bullying, they just didn’t have an effective policy, and this was before the time in which effective bullying policies came in.

But some other things that they used to say to me was that I should smile more, and I’m like “Well I’m not going to smile just to smile because I look strange when I do that”, and also naturally my face goes in this expression, I can’t really my face in that regard. “Smile more…”, stupid, stupid reason for that.

And also I had a fair bit of problem with doing religious studies. When the father came, the father at the school was a really nice man, unfortunately he passed away recently, but after the class, I’d always be asking really literal questions like “How does God exist if he came first? What made God?” and things like that. Very literal and I wouldn’t be able take in any answer other than that (literal). And the father would leave, and the teachers would be quite upset that I was asking these types of questions, and I’m like “Well, I want to know.” And so in Year 6, they gave me a book on Basic Physics.

I had the double whammy of having an ASD and being of supremely high intelligence because I got tested in Year 4, Year 5 and they found I had a very, very high IQ, so I had been incredibly smart and was unable to communicate how smart I was. So yeah, it’s probably the reason why you know I’m a little bit older (higher year level for age) than these guys are. I’m onto my second Masters at Melbourne, and on that grounds I also did my Undergraduate and my first Masters. I’m now doing my Masters of Education and I’m 23.

I got diagnosed when I was 16 in Year 11, my mistake. And, yeah they wanted to test me for Dyslexia coz I had very horribly bad spelling and I had quite a lot of issues with Mathematics, and I had a form of Dyslexia when it came to audio processing. So when I received verbal information, I had trouble taking in which is quite tied to the ASD. I also had a couple of issues which was also tied to numbers, I would reverse them, traditional Dyslexic style, but it only affected numbers.

And one of the programs they introduced there was that they’d give me my coursework for the week at the start of the week. They would email it to me because it was start of ICTs in schools. They would email me the set questions for the week and I could do them and I knew what they were gonna be doing. And some of the subjects, the teachers were willing to tutor me after school during my free periods, which I was quite happy over that. And some subjects, I got a private tutor. And also, my mother was my advocate in Year 11 onwards as well, as I got the further Asperger diagnosis. I got this extra diagnosis because 2 other members of my family were diagnosed with an ASD: one with High Functioning Autism and one with Aspergers. So they got me tested as well. And a bit of controversy in my diagnosis, fluctuating between High Functioning Autism and Aspergers, they’re both in the spectrum, that’s how I see it. And from there, my parents, particularly my mother, advocated for me.

I got a laptop to use in class to help me, I also got Special Consideration for all of my exams. School was very good in regards to that. The teacher gave me a lesson plan with a lesson plan planner, they started to give me that as well so I knew what to expect later on in the Semester. Things like that. They always made sure that for assessment tasks, I had a good month’s notice on them because I normally found them, um, stressful.

My school didn’t really have a good bullying policy because this was before the proper bullying policies were being introduced. Particularly, being female, female bullying is different from male bullying, it’s snarky remarks and comments about people in the toilets. And also I’m quite tall, so I stood out like a sore thumb. So somewhat endemic is that when it comes to dealing with bullying, there’s an issue on tackling girl on girl bullying for things of that nature. And I found that when I was able to get a circle of friends that understood me, I didn’t have as much an issue of bullying.

There’s a funny story, when I was in Year 9, I had a boyfriend. And he was another tall boy in the class, and we were apparently put together because we were both tall. And then after about 3 months we broke up, and he came up to me in class and said “We’ve broken up”. And I said “Oh ok, do you want your pen back?” Apparently, that was the inappropriate response, I was meant to be quite devastated. So everyone was like “Oh, ok then!”

Another funny story, when I was in Year 12, we had a French exchange student. And we became very good friends, we’re still good friends today. And everyone was under the assumption that he was strange like me, but when I went to France, I realized they were all like that. So I was like “I’m gonna move here, particularly in Paris!” The self censoring on inappropriate comments on appearance, they don’t do that in Paris terribly much.

But yes again, there was a bullying issue. But recently about a week ago, I had a person who wasn’t terribly nice to me throughout school apologize to me for not being terribly nice to me. It was on Facebook, so, awesome in that regard.

Teacher: That’s interesting because the bully has made some transition from the adolescent stage to the adult stage (maturing).

Introduction to Asperger Syndrome

I created this blog because I wanted to educate people a bit about Asperger Syndrome, and also to let them know about my issues and experiences surrounding it, and how it affects me as a Medical student etc.

Although Asperger Syndrome is becoming an increasingly known condition, with worldwide diagnosis rates increasing significantly since its introduction to the DSM-IV (Diagnostic and Statistical Manual of Mental Disorders) in 1994, lots of people still haven’t heard of it. Far more people however have heard of the term “Autism”, and when they hear that Asperger Syndrome is a form of Autism, lots of stereotypes and misconceptions pop up in their mind. I’ll try to clarify these confusions by defining Asperger Syndrome more accurately.

Firstly, Asperger Syndrome is a pervasive developmental disorder that lies within the Autistic Spectrum. The Autistic Spectrum is basically a spectrum of conditions that range in severity of certain issues, primarily social impairment, communication difficulties, and stereotypy (repetitive behaviours). Sensory issues are also extremely common among people on the Autistic Spectrum.

ASDs (Autism Spectrum Disorders) are NOT mental illnesses!

Asperger Syndrome is considered to be a high functioning form of Autism in the sense that there is no mental retardation (IQ is 70+), and no noticeable impairment in practical verbal/written language skills. In fact, many Aspies have above average IQs and/or Hyperlexia (superior reading ability). This is different from Classical/Kanner Autism (lower functioning), in which there is a noticeable language skill delay or impairment, and significant prevalence of mental retardation***.

ASDs do NOT automatically equate to mental retardation!

***( In fact, I disagree with the notion that most Classical Autistic people considered mentally retarded are retarded, due to the methodology used to test their IQ, but that’ll be discussed in another post in the future.)

HOWEVER, what people with Asperger Syndrome and others with ASDs do have is social impairment, in the sense that they don’t have the intuitive ability to read non-verbal cues and gauge social situations in real time like NTs (Neurotypicals, ie non-Autistic people). And there are also innate difficulties and/or absence in performing certain non-verbal activities, like eye contact and expressive body language. Also, most people with ASDs communicate and understand things differently to NTs, so many Autistic people have trouble in understanding jokes, sarcasm, and irony, or they interpret it differently, especially in the literal sense.

All this leads to many misunderstandings in communication between people with ASDs and NTs, and either party can be easily be offended or made upset. The people with ASDs are then seen to be “weird”, “arrogant”, “rude” etc by certain NTs because their behaviours are perceived to step outside what was expected by society’s social norms. The person with ASD DIDN’T intend to appear that way to the NT, because they interpreted the situation differently by not recognizing the non-verbal social cues and other contextual features.

Likewise, the NTs’ behaviour can also be irritating, irrational, upsetting or confusing etc to the ASD person who tends to view things in a logical and practical perspective.
It also makes people with ASDs more vulnerable to bullying and abuse by certain NTs who are intolerant of those who are different from them. This is a major problem that ASD people suffer from at school and in the workplace, and makes it harder for ASD people to attain and maintain employment.

ASDs involve communicating and seeing things DIFFERENTLY!
It’s both an impairment AND an ADVANTAGE (to be discussed next time)!

People with ASDs, and especially those with Asperger Syndrome, ARE capable of learning about contextual communication, and understand and produce non-verbal cues towards NTs, but it’s a time consuming, manual process that’s usually learnt intellectually, and not intuitively like NTs.

Stereotypy is also a symptom of those with Asperger Syndrome (and other ASDs). It basically involves certain repetitive physical movements and/or activities. It is also called “Stimming”, and is actually quite soothing and comfortable for the person who does it. It’s meant to be a way to manually stimulate oneself or calm oneself when they are stressed. The typical examples cited in other ASD literature include hand flapping, and rocking back and forth. If you physically force or punish an ASD person to stop stimming, chances are they’ll be quite angry or upset.
Sometimes, we don’t even realize we’re doing it automatically! For me, my stims are walking in circles, pacing back and forth, and twisting my hair. However, when I’m fully engrossed in study or work, or when I’m enjoying myself doing something else like watching TV, then I usually stop stimming because I’m already stimulated doing other things.
Stimming is often viewed to be a bad thing and inappropriate in public by NTs, so many Aspies learn to control their behaviour and only stim when at home, in a private place, or in the company of people who are fine with it.

A narrow range of interests, or special interest, is very common in people with Asperger Syndrome, although not officially part of the DSM-IV criteria. An Aspie can be fascinated with a subject or hobby and learn as much as they can about it through encyclopedias, the internet, CD-ROMs etc, eventually becoming very knowledgeable in the matter. The subject could be trains, cars, teddy bears, quantum physics, Calculus, chess, anything!
It’s one of their joys in life, and is very important for positive self esteem, and they’ll be very happy to talk about their interest if asked about it. It’s much easier for them to make friends who share the same special interest with them.
If their special interest or small range of interests is in a field that has “real world value”, especially in the Scientific field, they can later on turn their special interest into a career and be very successful through their enthusiasm and hard work.

So in conclusion:
1. Asperger Syndrome is an Autism Spectrum Disorder that has no practical cognitive or linguistic impairment.

2. Asperger Syndrome involves an innately “impaired” and different communication style with Neurotypicals, difficulty forming friendships compared to NTs, along with repetitive activities.

3. People with Asperger Syndrome are perfectly capable of making friends and having intimate relationships, providing they work on certain social skills and/or meet the right people.

4. People with Asperger Syndrome are NOT stupid, because Social Skills =/= Intelligence.

5. Special Interests and Sensory Issues are very common among people with Asperger Syndrome.

6. Asperger Syndrome has many disadvantages as well as advantages!