While she didn't misquote me, she left out a lot of detail due to word limits etc, and I felt that she didn't fully express how I felt, and gave the impression that ASDs were primarily about social issues and empathy when in reality it's a condition that completely changes the way in which one processes information, leading to subsequent symptoms and effects in behaviour etc. Below are my complete answers (at the time) to her questions:
1. How did you hear about the trial, and what made you want to get involved?
Very soon after getting officially diagnosed with Asperger Syndrome (at age 21) in May 2010, I was extremely relieved to understand numerous causes of my difficulties in childhood and adolescence. In addition to obtaining numerous books regarding ASDs (Autism Spectrum Disorders) prior to and soon after the diagnosis, I also checked Mr. Tony Attwood’s home page (international expert on AS/HFA) as my initial reference website for Asperger Syndrome.
As a medical student, and Neuroscience being one of my special interests, I was very interested into learning about the Neurological basis of AS and HFA, and finding out what research studies were being conducted. Several neurological studies and double-blinded treatment trials on AS/HFA individuals have already been conducted with peer-reviewed papers published (also available on Pubmed) in the past 15 years or so, but the studies were often “unsuccessful”, the study samples were often rather small (N < 20) or the plethora of neurological/psychological theories were a bit dubious to me.
I looked at the “Research Studies” section of Tony Attwood’s site to see what research was currently conducted internationally, and most particularly in Australia. I was very excited to see that a TMS (Transcranial Magnetic Stimulation) trial was being conducted in Melbourne at the Alfred Psychiatry Research Centre to see if rTMS (repetitive TMS) of a specific part of the brain (mostly Medial Prefrontal Cortex + Anterior Cingulate Cortex IIRC) would improve social intuition in adults with AS/HFA.
I wanted to take part in this study coz the rTMS treatment may symptomatically improve my social intuition (eg intuitive empathy in regards to non-Autistic people, reading facial expressions rapidly) so I wouldn’t have to constantly exhaustingly learn social skills at an intellectual level. I was very willing to be a “guinea pig” and make a contribution to ASD research by being 1 of 20 volunteers for this exclusive and pioneer rTMS trial, so hopefully I’ll help the researchers become one step closer to figuring out the neurological basis of Asperger Syndrome.
HOWEVER, I was very concerned that the rTMS treatment would affect my other Asperger traits, some which I value and consider an advantage, such as my hyperfocus ability, intuitive honesty, integrity and strong ability to see details. I wanted improved social intuition but not any other parts of my Asperger’s to be affected. I did a Pubmed search regarding TMS and Asperger / Autism, which only resulted in 2 or 3 papers at the time IIRC, none which were directly relevant to social effects.
A Google search indicated that rTMS trials were also being heavily conducted in 1 other place in the world, which was the BIDMC (Beth Israel Deaconess Medical Hospital) in Boston. More importantly, I thoroughly read the account of John Elder Robison (an author with AS who published his autobiography “Look Me in the Eye”) whose blog entries in early 2010 thoroughly described his experiences of taking part in the BIDMC rTMS trials, whom in conclusion described improved “sociability” while still preserving his other Asperger traits, so the rTMS seemed sufficiently selective for me. His blog entries however didn’t mention which parts of his brain was being targeted, and the Alfred trial may be targeting a different area, so I had to contact Dr. Peter Enticott of the Alfred for an extensive preliminary interview to gather extra details about the trial.
I was content with the way the rTMS trial was being conducted, and I had a strong prediction that the rTMS wouldn’t totally remove my AS, and may potentially improve my intuitive social abilities, so I agreed to take part in this double-blinded treatment trial.
2) How long have the effects lasted on you? And do you feel different as a person? What is the biggest change?
It turned out that I was part of the placebo treatment group in my 2-week rTMS trial in Monday 2nd August – Friday 13th August 2010.
I was offered the TRUE rTMS treatment in 15th – 26th November 2010, in which I definitely felt effects soon after.
I only received one definite effect from the true rTMS treatment, which was painless eye contact. I no longer have pain looking at people straight in the eyes when speaking to them, or them speaking to me. It literally doesn’t hurt or feel “piercing” anymore, and I don’t automatically feel anxious or threatened when looking at somebody’s eyes even though I knew that they weren’t going to hurt me. In the past, the only times where I could have painless eye contact with anybody was when I was under the influence of CNS depressants such as alcohol and benzodiazepines, but now I can have painless eye contact when I’m sober.
I was extremely surprised that the rTMS on the Medial Prefrontal Cortex and Anterior Cingulate Cortex had effects on my eye contact, as previous info that I read regarding those 2 regions through medical textbooks and literature don’t really discuss about it. Personally I’m supportive of more double-blinded rTMS trials to further investigate the functioning of these and other brain regions of ASD individuals.
I still have difficulties in intuitive empathy and certain language pragmatics, so I still have to learn about social issues manually as if it was an academic subject like a foreign language. I still have difficulties communicating with patients in a smooth manner, so I have to compensate by memorizing a large number of polite phrases and responses, to simulate the appearance of “politeness”, “empathy” and “professionalism”.
I have manually learnt to read certain facial expressions, but it’s still hard for me to read them on the spot in conversations when my mind is automatically focusing on the verbal words, and it’s hard for me to multitask different modes of communication. I still have difficulties with executive functioning and still strongly prefer plans and routines, even though the unpredictability of the Hospital environment makes me rather irritable. My sensory issues still exist at the same (mild) level, and I didn’t gain or lose any synesthesia abilities (I have ordinal-linguistic personification). I still space out a lot and have trouble modulating the volume of my voice in a conversation (especially too loud). I’m still quite bad tempered and have to manually suppress my rage in public when little things irritate me.
Nevertheless I’m extremely pleased that I gained the ability of painless eye contact only, and it hasn’t waned. When I talk to staff and patients at the hospital, they don’t think I’m ignoring them coz I’m looking at them during a conversation. The painless eye contact also means that I’m less distracted by the “pain” (in the past) and can attempt to use more of my cognition to read their facial expressions or look at their mouth (partially reading lips) without having to mentally block out the discomfort of eye contact.
I’m also very pleased that the rTMS didn’t interfere with my other Asperger traits, so I still feel pretty much like an Aspie (I definitely do not feel “Neurotypical” at all), but with a reduction in daily anxiety previously due to eye contact. I still get anxious about other things, but I have benefitted from having one anxiety-inducing factor removed.
3) In your first blog you talked about your worries about betraying the ASD community by having this treatment. How do you feel about that now?
When exposed to the Autistic Community (especially in the Western World), it becomes EXTREMELY obvious that there are several major dichotomies:
a) The “Neurotypicals” vs the ASD individuals.
b) “Pro-Neurodiversity” / Anti-cure vs “Curebies” (people who want a cure for ASDs)
c) Asperger / HFA individuals vs Non-verbal / LFA individuals
d) Neurotypical parents of ASD children vs ASD adults
My worries of betraying the ASD community was due to b), but my assessment prior to and after the true rTMS treatment was that it wouldn’t be immoral, unethical, or betraying for an ASD ADULT to give consent to a treatment that could symptomatically treat one aspect of their condition while preserving other traits, and improve their overall quality of life. Currently I am against AS / HFA children receiving rTMS treatments as they are under the age of consent, may not want to receive the treatment, and/or may not have the ability to fully express how they feel from it.
I don’t feel guilty or ashamed at all about having painless eye contact, and I think that any treatments that have been medically proven (after extensive double blinded-Clinical trials, probably up to Phase V imo) to reduce debilitating aspects of a condition should be available to adults who can conscientiously choose to receive it.
I feel that the ASD world is extremely divisive, and I’m personally feel that it is this division in addition to several medical blunders/exploitations (especially the Vaccines-causing-Autism controversy, and fake practitioners selling quack therapies to “cure Autism”) that has delayed progression into understanding the true nature of ASDs.
I’m grateful for the effects, and I’m happy and proud that I’ve made a contribution to authentic, proper ASD research.
4)How old are you, and whereabouts in Australia do you live?
I’m 22 years old, but received the real rTMS treatment when I was 21. I live in Melbourne, Australia.
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