Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts

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.
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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".

Saturday, March 22, 2014

Semester 12 - Medicine (RETROSPECTIVE POST)



Semester 12 was the “Pre-Internship” Rotations of Medicine, Surgery and GP, which I also happened to do in that order.

My Medicine Rotation was IMHO, academically and socio-emotionally less interesting than my Geriatrics Elective. The Casemix seemed narrower even though the Medical Units included some middle-aged Patients - nevertheless lots of Pneumonias, Cellulitis and GIT Bleedings. The Ward Rounds were really long, about 4 or even 5 hours as the Unit list could extend up to 30 Patients, which I personally thought was ridiculous for 2 Interns to manage. The Consultants leading our Unit were very good-tempered and polite though, which surprised me given the Patient Load. As the relevant Patients were scattered throughout the Hospital on different floors (unlike Geriatrics where everyone was on the same Ward), and these Interns were insistent on writing the Progress Notes, I quickly ran out of Patience and decided to leave the Ward Round halfway through to help with typing Discharge Summaries instead, which was still time-consuming but engaging. I did appreciate the Venepuncture and IV Cannulation Opportunities I got during this Rotation, and was enjoying the process of collecting Patient Stickers from the Pathology Nurse and taking Blood Samples / inserting Cannulas. It was a bit like an Adventure hunting down Patients to intervene on. I probably did about 30 Cannulations and 50 Venepuntures in this Rotation. It felt gratifying to put Test Tubes into a Container which got placed into a Chute to be suctioned to the Pathology Department, “Futurama” - style.

Two interesting Cases though. We had a Bedside Tute and the enthusiastic Registrar showed us a Patient who had Janeway Lesions on his hands, which are flat painless skin lesions following prolonged, undertreated Infective Endocarditis. To be honest it didn’t look that remarkable, but because this Clinical Sign is so apparently rare in Australia (maybe except Aboriginal Communities) that we would probably never see one again for the rest of our working lives.

Second Case was a young Autistic Man who was very agitated on the Wards. I found it particularly unusual that his Expressive Speech was approximately that of a 3 year old, yet at one point during his Meltdown, he rapidly said "Our Conversation is Over". At the time I wondered if they neurologically have the Capacity to acquire significant Vocabulary and other Information, but are unable to retrieve / integrate it efficiently due to inefficient Wiring, almost like he was "trapped" in a sense? I managed to calm him down by squeezing his hands and forearms, and also stroking his back or arm repetitively with his Soft Toys, and talking about his Special Interests, hence reducing the need for Psychotropic Medication on that Day.
His Mum was pleased and complimented my Actions to the treating Team.

I think this Medicine Rotation further emphasized the Notion that it’s not necessarily the Medical Specialty that influences your enjoyment of a Rotation, but also the Staff within. Particularly as this Rotation was even more bread-and-butter than Geriatrics, I still looked forward to each Day coz the Interns were otherwise friendly and very appreciative of the Help that I provided, and were willing to give little bits of Advice here and there.

Wednesday, March 12, 2014

Geriatrics (Part 1/3, RETROSPECTIVE POST)



I did my 8 Weeks’ Geriatrics Elective in the massive 11 Weeks’ Break between Semesters 11 and 12. Interestingly, the Senior Geriatrician who approved my Elective WAS 1 of the 2 Examiners in my Long Case Exam (!!!), but he actually delegated my Supervision to another Geriatrician, so I didn’t see him much apart from the weekly Radiology Meetings. The Elective was held at the Geriatrics Department away from the main Hospital Campus, and although I was given Opportunities to follow the Geriatricians onto the (Main) General Medicine Wards to see Referrals, I didn’t pursue that coz I felt I was much more attracted to staying at the Former Location. Likewise, there were Opportunities to attend Outpatient Clinics for “Memory”, “Falls”, “Incontinence” and “Wounds”, but I only attended a few Sessions of each before getting drawn away to the “Main Stage”.

Geriatrics Outpatient Clinics were well Organized. Incontinence Clinic was probably the least interesting to me coz the Majority were Female Patients (despite the fact that Men can have enlarged Prostates --> Overflow Incontinence) and they had Stress or Urge Incontinence. I was able to witness and take a few Histories, but wasn’t allowed to examine their Pelvic Region or operate the Machine which detected their PVR (Post-Void Residual, ie urine remaining in Bladder after Urination), so I felt rather left out of the Diagnostics Process.

Falls Clinic was very good coz I got to see how the Geriatrician use a systematic Approach to exclude numerous causes of Falls (Medical and Environmental Causes), along with observing how he did Physical Exams, not just Upper and Lower Limb, but also Falls-Specific ones such as “Timed Up-And-Go”, ie more Action and engaging.

Wounds Clinic was fascinating visually, plus the Fact that there was a Multidisciplinary Team working at the time (Doctors, Nurses, Podiatrists, Pharmacists), it felt like a “Medical Party” : P . There was a very passionate Wounds Specialist whom I initially thought was a Dermatologist (Skin Doctor), but was actually a Pharmacist. He made the Effort to explain the Pathophysiology of Venous and Arterial Ulcers, what he was doing in each Step with his Creams / Ointments / Special Bandages and how it would help the Skin, whilst I furiously wrote Notes. I walked into another Room and was awed by the Podiatrist as he skillfully shaved off Slivers of dead Skin from Diabetic Patients’ Calluses on their Foot. I think he might’ve thought I was overly eager coz I was peeping close to observe the Slivers curl off. That Podiatrist could perhaps be a Sculptor as an alternative Career : ) . Whilst the Callus was being shaved, I was also took a partial Medical History of the Patient. It was disturbing yet intriguing how some of the massive Venous Ulcers were slow to heal in the Elderly Patients. The Venous Ulcers were typically superficial up to ~10 cm in Diameter, but all that “Raw” red, shiny dermis looked REEEEAAALLLLY PAINFUL even though our Textbook said it’s not supposed to hurt much. I was shocked at the Fragility of their Skin, when I saw a Nurse accidentally tore a bit of the Patient’s skin with a Scissor while cutting the Wound Bandages, so delicate like Tissue Paper. Whilst the Patients were being treated, I was able to take casual Medical Histories from them, focusing on Risk Factors for Ulcers and Falls (which lead to Skin tearing off). The Visual Details and the Patients’ Information was very stimulating.

In the Memory Clinic, I played a more passive role in observing the Geriatricians do Memory and Cognitive Assessments, although I was amused by the Variety of responses given. I “LOL’ed” in my Mind when an elderly male Patient was asked to point at the Picture that was Nautical, and responded “Hmmm this is difficult. I can see the Boat over here, but a Crocodile is technically Nautical as well…”. There was 1 male Patient aged ~70, who I suspect is an undiagnosed Aspie who has an ASD Daughter, presenting for his Radiology Results, that most likely ruled out Neurodegeneration. I was curious to see if he exhibited signs of Dementia, but the Geriatrician said that Clinically and Radiology-wise he looked fine, although there were concerns by his (NT) Wife that he has some sort of Cognitive Impairment due to his supposedly poor Relationship / Interpersonal skills during their entire Marriage. He had that round Macrocephalic (large head) Appearance and Flat Affect common in Aspies, and the same Special Interest his whole Life. I felt like bursting out and saying that he may have AS, but knew that it was technically unprofessional to do so, so left him alone. I know it was just 1 person, but it was a relief to know that he wasn’t diagnosed with Parkinson’s Disease or Fronto-Temporal Lobe Dementia (yet?) because my personal research suggests that ASD / ADHD people are apparently at higher risk of these 2 Dementias, very sadly : ( It was also very emotional when the Geriatrician had to inform another Patient their Diagnosis of Alzheimer’s Disease, its Implications and Initial Management. She tried to put a lighter spin on the Diagnosis, in that he just had to do Things differently, like using Public Transport instead of Driving, but his Family Members were shedding Tears and hugging him, likely knowing that these were Attempts to Soft-Pedal his Diagnosis, which is typically terminal within ~7 years IIRC…

Sunday, February 9, 2014

Paediatrics (Part 4/5, RETROSPECTIVE POST)



Strangely I didn't meet any ASD Children by myself which was a real shame, although I witnessed a few when sitting with other Paediatricians in the Epilepsy and Developmental Paediatrics Outpatients (at RCH), several who were very low-functioning supposedly secondary to documented Genetic Mutations, non-verbal and had Bowel + Bladder Incontinence (severe Frontal Lobe impairment). According to my Developmental Charts, none of their domains (Gross Motor, Fine Motor & Vision, Speech & Language, Social & Emotional) reached that expected of a “normal” 3 year old. One of them couldn't tolerate Eye Contact at all and had to use a Mirror in order to look at other people. 

They would most likely required expensive 1-on-1 support for the rest of their life (given the current technology), being a massive financial and/or emotional “burden” on the Carers and Taxpayers. It made me wonder how productive it is for me and other Aspies to be placed in the same Diagnostic Category (ASD) in the DSM-5, although it's true that we're both on the Autistic Spectrum. The purpose of the Spectrum is to acknowledge there is significant variation in functioning and abilities, but I worry that people would just stereotype me to be totally impaired or incompetent when actually I have my sharp sets of strengths and weaknesses. Maybe the only Solution is for more Aspies to “Come out of the Closet”, to help promote awareness of the condition, and that not all ASD people are “Retarded” or “Savants” like “Rainman” (Kim Peek, who supposedly had FG Syndrome in fact, and not ASD).

For a fleeting moment, I wondered if low-functioning ASD Children (at least, the ones who will still be low-functioning as Adults) were better off being aborted instead of being born as they wouldn't have the Executive Function or Cognitive Abilities to lead any semblance of a “Productive Life”, but I was horrified and disgusted at myself for possibly supporting Eugenics (beyond Terminal conditions). I really wasn't sure what to think.  The Cognitive Dissonance seriously made me very uncomfortable.

I've for the most part thought it was sad but acceptable for pregnant Women to terminate Foetuses diagnosed with Trisomy 21 (Down Syndrome) given the Severity of the Disability, but to support the Termination of innocent Autistic Children?

How could I be a Supporter of ASD Individuals, yet go against some of my kind???!!!



Am I a Hypocrite???!!!



Does one have to be productive member of Society to justify their Existence or Differences (Medical Condition, Disability, Sexual Orientation, Lifestyle etc)???



Where does one draw the line for Therapeutic Termination???

This is all so complicated to me, and I'm unable to neatly categorize it using typical “Black & White” Thinking because of the Emotions and Politics involved. I still dunno what the correct Answers to the above Questions are...

Paediatrics (Part 1/5, RETROSPECTIVE POST)



Following O&G was CAH (Child and Adolescent Health, ie Paediatrics). Of the 9 weeks, I spent about 6 weeks in total at the Paediatrics Department of my Clinical Hospital, and the 3 other weeks at RCH (Royal Children's Hospital) for lectures and a mini-attachment. Paediatrics was the first Clinical Rotation that I REALLY enjoyed and was enthusiastic about, of which there were multiple factors. I temporarily felt “ALIVE” and “SWITCHED ON” which was a huge contrast to my very low state the previous Semester. Another thing that made this Rotation memorable was that all the supervising Paediatricians knew about my AS and were amused by it given its relevance to Paediatrics. None of them were patronizing or treated me like a child. I didn't experience any repercussions in disclosure and knew in advance that it would be taken well.

The Paediatrics Department of my Clinical Hospital was very small compared to RCH, there were about 18 beds, and about 1/3 of them were for Eating Disorders. Being male and not a Paediatrician involved in their care, I was advised to avoid speaking to patients with Eating Disorders (all teenage girls). Most of the rare and complex cases would've been transferred to RCH, so the remaining Case-Mix at the Peripheral Hospitals (including this one) were very “Bread-and-Butter” - Pneumonia, Bronchiolitis, Gastroenteritis, Dehydration, with a bit of Epilepsy. Because there were so few Inpatient beds, I actually spent more time at the Paediatric ED which although had even fewer beds, but had much higher turnover, and hence more opportunities to practice Clerking and Physical Exams.

Like with Women's Health, we had a PBL (Problem-Based Learning) Tute each week at the Clinical Hospital and opportunities to attend Outpatients, along with morning Ward Rounds (including on the Weekends if we'd like).

PBLs were mostly on “Bread-and-Butter” cases. However there were two Tutes that stuck out in my mind, the first one regarding a fictional 4 year old boy who was being assessed for ASD / Fragile X Syndrome. Somewhere in the text it said that the boy had frequent “Tantrums”, particularly coz he wasn't able to communicate his ideas owing to his Speech Delay. I wasn't happy at the term “Tantrum” being used coz it brought the connotations of being naughty, rebellious, and/or manipulative (in reference to NT children, eg at the supermarket wanting something but not getting it), when he was anything but. 

In the Tute, I said I found the term offensive and misleading and that the more appropriate term for such an ASD child would be a “Meltdown” due to his current neurological deficits being unable to meet his personal needs, leading to massive frustration and vulnerability. And that the approach to his “Meltdown” (Education, Accommodations, minimize Sensory Overloads) would be completely different to that of a “Tantrum”, which we were taught to just “ignore the child until they stop whining, to give them the message that their Tantrum isn't working or acceptable”. I feared that parents would treat ASD children having Meltdowns inappropriately, which would just exacerbate the situation and cause more mental scarring. However the Tutor insisted that it was still a “Tantrum” in the literal sense, and was thus appropriate. This incident was very frustrating and ironic to me, given that ASD people like me supposedly take things more literally (relative Frontal Lobe deficits), and have an impaired ability to comprehend language pragmatics (including subtle connotations), and yet it was the Tutor (NT) who took it literally.

The second memorable Tute was about a Teenage girl who had several psychosocial issues to be addressed in conjunction with Epilepsy management, including Smoking, drinking Alcohol, teenage Sex and possible Depression. IIRC, in the passage regarding her Past History, that she “Tried Sexual Intercourse a few times last year but didn't enjoy it, so hasn't had it since.” This phrase was particularly interesting to me, coz it was only then I realized that sometimes, in order to dislike an activity, you have to give it a try first. I literally told the Tutor that “In order to know that she doesn't like Sex, she has to try it first,” in which he concurred. 

It may sound really obvious to others, but it helped influence my approach in life, that part of personal growth involves getting out of one's comfort zone (or narrow interests / repetitive activities) and experiencing new things temporarily, which would assist with developing one's perspective too instead of relying on preconceived notions or fear. I now see it as collecting more data to analyze. Sometimes there are strangers who I'm interested in speaking to, and whilst I used to be too anxious about approaching them at all, now I'm more forthcoming and curious, thinking it's “It's either I speak to them now, or never and continue to wonder what it's like if I had spoken to them”.