Being a Medical Experiment Is Fun!


The most exciting phrase to hear in science, the one that heralds new discoveries, is not “Eureka!” (“I found it!”) but rather “hmm….that’s funny…”  ~Isaac Asimov

I’m a fokkin’ medical experiment! ~Wikus van de Merwe, District 9

Revenge of Schrodinger's Cat

I had no idea what to expect when I signed up just a few months ago. Would there be lots of poking and prodding? Countless interviews? Wearing something weird and experimental on my head through a one-way mirror while a group of studious, somber grad students made notes on the other side of the glass?

I’m referring to my participation in one of the many research studies taking place at Vanderbilt University in Nashville. Without going into too much gory detail, this particular study involves adults on the autism spectrum. Today was the second part of the series; a few weeks ago, I went in for an initial visit. That part was mostly dry: forms to fill out, background details to fill in. As I was a novice at all this scientific research stuff, I really had no idea what to expect. Thus far I’ve been pleasantly surprised…as well as deeply illuminated.

Everyone envies Barclay's huge...brain

The most useful discovery thus far? The confirmation of my Asperger diagnosis. We’d always suspected it; this confirms it. Ten years ago I, along with much of the American medical community, had never heard of Asperger’s, much less understood anything about it. To say there is an upswing in autism cases in this country is an understatement. By some estimates, 1 in 100 people may be on the autism spectrum. Many, including me, have gone their entire lives without knowing they were on the spectrum at all. Now that we know, the ones of us who get a diagnosis are able to see our past through this prism and understand a great deal about our actions, our motivations, and the choices we’ve made in life.

I’m pleased to say that everyone I’ve met involved with the study, all of whom are neurotypicals (NTs, or “normals”: those who are not on the autism spectrum) have been devoted, caring, and professional toward me and the other participants in the study. They clearly love their work and they’re working toward a greater understanding of autism. Perhaps, one day, a cure will arise from this research. For the sake of any children I may have one day, I hope this is the case.

Today’s part of the trials was far more interesting than the traditional paper-and-pencil tests. Among other things, my sensitivity to light and sound were tested. I also engaged in a test for reaction time. Interestingly, many autistic people, according to the researchers, score higher on certain parts of the reaction time test. Some of the portions were easy and others were baffling. I took them all with great interest, knowing it was all, as the saying goes, being recorded for posterity. No one-way mirrors or lab assistants hovering…this was all done with the greatest respect for my limitations and disliked. (For one part of the tests, I even requested the lights be turned all the way off. The proctor was amazed I could see at all in the dark, much less 20/20.)

Schrodinger’s dog?

One of the main reasons I’ve been so eager to participate? Science for the sake of science. When I was growing up I engaged in all sorts of homemade experiments merely to see what would happen. The stereotypical mad scientist in literature and film is male, but I always liked to imagine myself with a lab coat and flyaway hair, determining the relative brightness of faraway stars or encountering new strains of bacteria. This is my chance to live that dream, at least for a little while.

Anyhow…back to today. One of the very best experiences of my life. I’ve always secretly dreamed, as many Aspies do, of being able to pursue my Special Interest(s) as a career. Since my special interest happens to be covert ops/the CIA/soldiers of fortune, the odds are stacked against me, as I don’t know anyone in Langley and won’t be risking my neck in Iraq or Colombia or North Korea anytime soon, even for good pay. Today I was allowed to live even that fantasy. The researchers, knowing what they did about me, had me fly a helicopter simulator using an ancient but cool joystick. They also had me hooked up to a machine to measure my brain waves as I looked at photos of things I really liked (the A-Team, horses) or else neutral photos (plants, clouds, a record player.) Can’t wait to see how that turns out.  They told me I’d even get a picture of my brain to take home.

I’m not sure how much longer the study will last, or whether any cure will ever arise from the research. I’m hoping for a ‘yes’ on both counts. In a few weeks I’m due to go back for the next round. If nothing else, I hope my experience provides insight to help other Aspies in their uphill walk in an NT-dominated world. Things that NTs overlook all the time: crying kids in restaurants, other people’s perfumes, the texture of cottage cheese? They may be crippling obstacles to Aspies.

In the meantime I’m enjoying the ride, and learning more about myself (not to mention getting a small stipend for my time.) Who knew being a guinea pig could be so much fun, or so much good for society?

White paper, and medical experiments

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~ by Howlin' Mad Heather on March 19, 2011.

One Response to “Being a Medical Experiment Is Fun!”

  1. That sounds really interesting. Good luck with it 🙂

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