As many of my blog & Twitter followers know, I spent several days last week as the guest/lab rat of the Center for Excellence in Autism Research at the University of Pittsburgh (CEFAR). (Read my previous entry for the details of what they are doing.)
Because I didn’t take my laptop with me (I didn’t want to tote it thru airports, or spend my evenings typing in my hotel room), and because of the limited capacity for detail on Twitter (that 140-character thing!), my reports were pretty limited.
But many of you (bless your ears) have asked for a full report of the experience — both the testing I underwent at CEFAR and my travels around Pittsburgh in my free time — so, without further ado, here it is!
Day One (travellin’, travellin’):
My flight out of Toronto was in the early morning, so I was up at the crack of 3:30 a.m. to finish getting ready & drive up to my dear friend Ann’s. I left my car at her place while I was away, and she drove me to the airport and picked me up at the end — I always feel more settled on trips when she does this for me. 🙂
Arrived in Pittsburgh shortly after lunch and was picked up by a limo service hired by CEFAR — the airport is way outside the city, so the lab makes sure their volunteers get safely to the hotel. My driver, a lovely gentleman named Kim, chatted with me about his city and as we were entering the Fort Pitt Tunnel he alerted me to keep looking, as “the city just POPS into view!” And indeed it does — gorgeous skyline, beautiful view of the rivers and bridges! (I have inserted a slideshow of photos below, if you’d like a look)
After checking into my hotel room at the Hampton Inn (where all the CEFAR lab rats stay) I dumped my stuff, a la Bill Bryson, and headed out to see what I could see. I was bug-eyed tired but determined not to waste a precious minute of my time away. Pittsburgh is known for rolling up its sidewalks very early, so I didn’t want to dally in my hotel room.
Thanks to John Elder Robison‘s Facebook and Twitter postings about his trip to CEFAR a few weeks ago, I knew to head up Forbes Avenue to the museums and student eatery district, so I did just that.
I arrived at the Carnegie Museum of Natural History just before 4 and since it closes at 5, the nice lady at the desk gave me a “comp” to get in! With a HUGE smile on my face, I checked my knapsack in a locker and scurried off to the art galleries upstairs. I stopped briefly in the dinosaur area but found it too overstimulating and thought an art exhibit might be just the thing.
Which it was… until, at 4:36, the fire alarm sounded. Just what an overtired Aspergian needs… NOT. So I clamped my hands over my ears and followed the rest of the crowd out the rear doors to the parking lot.
I was about to call it a day and go get some chow when I realized my knapsack was still in the locker — with my CEFAR itinerary, my glasses, my journal, and various other crucial items in it! There followed an anxious half hour of negotiating with security before I was allowed back in, escorted by a guard, to retrieve my belongings. (There was, of course, no fire. Pittsburgh is having a heat wave and it had activated the alarms. Sigh.)
I was completely fried by this time and having a struggle to keep my temper, but resolved not to let this spoil my first day. I trooped back out to Forbes Ave. and trundled back toward the hotel. I stopped en route at a sushi place and picked up a nice Green Dragon Roll to take back to the room for my supper.
Showered, unpacked, ate sushi in front of the telly and was asleep by 9 p.m.
Day Two: first day of testing at CEFAR
I was due at the Webster Hall labs on the University of Pittsburgh campus at 9:30 a.m., so after a complimentary breakfast in the hotel lounge (where I caught several of the front desk staff discreetly watching me — they keep an eye on all the lab rats, which I love), I went out front to await the hotel shuttle. It travels, free to guests, anywhere within a 3-mile radius of the hotel, which includes the CEFAR labs at U of Pitt and Carnegie Mellon University.
Made my way up to the labs, buzzed to get in, and after a short wait was taken off to an interview room by a nice lady called Rachelle to sign some legal forms. This is where I agreed to all the procedures I was there to do, and also agreed to have my data shared by other labs on request. This latter part is not mandatory but because I’m a female (rare bird in the Asperger’s world) I thought it would be helpful. My take on it is I was there to help so I wanted to do everything I could to be of use.
After that, Rachelle did a more in-depth Autism Spectrum Diagnostic Questionnaire thing with me, where she asked loads of questions designed to see where my strengths and deficits are. I was asked to define things like “friend” (surprisingly hard!), to tell a story using a handful of random objects from a toy box, to tell a story from a picture book (flying frogs!) (really!), and to pretend Rachelle was an alien and I had to instruct her on how to brush her teeth.
In other words, a lot of verbal testing and question-and-answer. It was videotaped because Dr Nancy Minshew, who runs this project, likes to show videos and demos of Aspergians when she does speaking engagements. Thank God I’d just had my hair done! 😉
After that, I was handed over to a woman named Maureen, who did some IQ testing: word comprehension, block puzzles (recreating shapes in a book with a handful of red and white blocks), handedness/dominance (I write with my left but do everything else with my right), grip strength, pronunciation of increasingly difficult words (I nailed the last one, “Terpsichorean,” and then rambled on about its roots and definition, causing Maureen to write furiously in her notebook!).
Then off to be weighed (argh) and have my cranium measured (a very average 57 cm, not like “Head” in “So I Married an Axe Murderer“!).
Finally, a quick pre-interview with someone named Holly in preparation for the afternoon’s activities.
On the way out to Craig Street for lunch (noodles at LuLu’s), I walked by St James Cathedral and stopped to get a few shots — amusingly, in doing so I inadvertently wandered into the driveway to the church and was nearly run over by a nice little nun in a Mazda, who honked politely and giggled at me as I leapt out of her path!
Then it was back to Webster Hall for more testing. This time I was asked to look at photographs of faces and indicate which ones matched. Having sailed through most of the morning’s tests, I was horrified to bomb completely at this one. I’ve known for a few years that I’m awful at recognizing faces (movies are a trial for me because everyone looks the same, and I have inadvertently insulted countless acquaintances and friends by not recognizing them when they pass me in the street) but this was proof positive that it really is an issue. Wow.
Still pondering, I was then led downstairs by two young researchers to a mockup of an MRI machine, made entirely of wood and plastic by some theatre students on campus! Apparently these things are a dime a dozen in the TV industry (think ER, Grey’s Anatomy etc.) but boy, was it cool! I had already been pre-screened, months previously, during my phone interviews with the CEFAR researchers, as to whether or not I was OK being in an MRI machine, but they really want to make sure, so into the simulator I went.
There’s a plastic mask that fits over your face to hold your head in place, and you have to hold a computer mouse on your belly, watch a screen, and click the mouse to answer questions — this is in preparation for the real thing the next day, in the real MRI, where they will be measuring your blood flow and brain function as you do the questions in real time.
Passed with flying colours and was released once more into the wilds of Pittsburgh, this time with a complimentary pass to the amazing Cathedral of Learning and its national-themed classrooms. I texted a friend of mine as I headed off and she laughed that I was truly in “Asperger Heaven”! Yup. 🙂
Spent a happy couple of hours in there, then cooled my heels in a nearby Starbucks, trooped home to the hotel for a quick shower and then caught the hotel shuttle back out to see the Duquesne Incline. My stars, I could have stayed there all evening — best $5.00 I ever spent! And for 50 cents extra, you can go into the “Gear Room” underneath it, which of course I did. Absolutely mesmerizing — and I’m amazed at how many Pittsburgh natives didn’t know about that room. If I lived there I’d be a regular for sure!
Had myself a nice burger at Five Guys Burger & Fries afterwards and then headed back to the hotel again.
Day Three: second day of testing at Carnegie Mellon and CEFAR
What an incredible day. I rode the shuttle again, this time to Carnegie Mellon University, and had a lovely chat with Tracy the shuttle driver as we went. She is familiar with all us lab rats (as are the hotel staff, as I mentioned) and was curious about the things I was doing. She has a 29-year-old nephew who likely has Asperger’s so I recommended a few books she might like to read.
At CMU’s fMRI lab I met a researcher named Kara, who spent about an hour prepping me for the actual MRI. We sat at a computer and ran through the tests I’d be doing in the machine: more face recognition — groan — and shape recognition, then watching a movie for half an hour while they did a structural scan of my coconut, then a few minutes of watching a stationary dot on the screen while they watched my brain resting.
Again, I was put into a simulator (seriously, these things are everywhere! I should order one for my home!) for a final run-through, this time with the added test of making sure I stayed absolutely still, and then it was off to the real thing. The technician, Steve, had me fill out a questionnaire about any possible metal bits in my body that I forgot to mention during my phone screening in May (I have a titanium screw in my knee from an ACL replacement, and an implant in one of my teeth), and various other health issues that might cause problems (in my case, nothing).
Then off with the bra (metal underwiring, don’t ye know) and the belt, earrings, glasses, necklace, rings…. My jeans were fine, oddly enough, even though they have metal buttons & zips. Don’t ask me why.
I was fitted with a pair of plastic glasses so I could see the screen for the tests (dead sexy), had earplugs shoved in my ears (the machine is VERY loud), and led into the machine room. It makes a rhythmic “thump-chirp” sound that makes it sound very much alive; it’s cooled by a series of pumps that shove liquid helium through it, and that’s the source of that sound.
I sat on the bed part of the machine while Steve strapped a band of electrodes around my head and a hair-net on top of that. With the Buddy Holly plastic specs, I was quite an object of beauty!
I was then told to lie back with my head in a little tray. The plastic “Batman” mask was clamped down over my face and foam padding was tucked in to immobilize my head. You’re told about 4000 times beforehand to go to the bathroom and make sure you have all your itches and twitches taken care of before this. Check, check, and check.
The computer mouse was put in my right hand, and the “OUT!” emergency button into my left — you’re told that if you push the OUT! button, you’re taken out immediately, but the test ends. (Frankly, if you’re tempted to push the OUT! button at this point, you’re an awfully good faker!) A blanket was put over me (it is VERY cold in that room) and with a quick “zoop!” I was raised and inserted into the MRI like a Pizza Pocket into a microwave.
A few moments later I heard Kara’s voice through the little intercom asking if I was OK and comfy and ready to begin. Ten-four, good buddy, let’s get ‘er done!
The first bit was the face recognition, which I bombed again, unsurprisingly. Every so often I was startled by the machine making a new sound (it was probably laughing at me). It has several modes: the “thump-chirp” I mentioned before, a sort of “thump-swish” that’s dangerously sedating (like a heartbeat), and a loud buzz and grind. After a while I stopped being startled — and frankly, I was really focused on NOT moving my amazing 57-cm cranium, ever.
They ran the face test 3 times, then the shape recognition (I’m better at that), and then I spent a strange half hour watching Spiderman (you pick your DVD before you go in, from their little library in the control room) with the subtitles on.
By the time I was about 20 minutes into the movie, however, I became aware of the fact that… oh no.. I needed to PEE. (Note to self: two coffees before an MRI are probably not the best idea.) However, having sat thru 5 hours of Schindler’s List with a full bladder, I simply gritted my teeth and soldiered through. Made it through the 5-minute “stare at the dot” activity, lay quietly while Steve released me from my various restraints, and then headed with purpose to the washroom.
I was given a nice computer printout of my brain from several angles (all the lab rats get this, as it’s so fascinating!) (and yes, they found an actual brain! ;-)). You’re also told at the start that if they find anything structurally awry, such as a tumour or aneurysm, you’re given a print of that to take home to your own physician. Thankfully, no such thing was found in my coconut.
Amanda, from CEFAR, came to fetch me in the U of Pitt van, and dropped me on Craig Street once more for lunch. I was surprisingly exhausted and after a quick sandwich, bailed into Starbucks for some badly needed caffeine and down-time.
Then it was back again to CEFAR for a family medical history (brief and spotty because I’m adopted), a blood draw (I hope they will send me at least one of any clones they make!) and the finishing-up with Amanda. I was surprised to learn that lab rats are paid a small stipend, which pretty much covered all my meals out and a few T-shirts for souvenirs — it’s awfully nice of them, given that they also paid my plane fare and my hotel and limo bill!
Then handshakes and thank-yous all round and I stepped, blinking a bit, out into the bright sun of a Pittsburgh afternoon.
I was still utterly exhausted and it was tempting to go back to the hotel for a nap. But I knew that once I was in I’d likely stay in, and I did NOT want to miss a thing. (My dad used to travel for business and never explore; infamously, he went to Athens and stayed in his hotel room. What a dork — I have sworn ever since that I will never, ever do that!)
So I headed off to Schenley Park (Pittsburgh’s answer to New York’s Central Park) and the Phipps Conservatory. Got loads of pictures of the Schenley Park/Panther Hollow Bridge (I like bridges as well as machines), and of flowers in the Conservatory. It was beastly bloody hot, but again, I was utterly determined not to waste a moment!
Afterwards, I cooled off in the Carnegie Library (“Free for All!”) where a nice librarian gave me a complimentary pass allowing me to use their Wi-Fi and update my breathlessly awaiting audience (cough) via Facebook and Twitter. Again, if I lived in Pittsburgh, I’d be here most of the time — they have an enormous collection not only of books but also of sheet music, DVDs, and CDs. And I swear I’ve seen their reading room in more than one movie….
Back out to Forbes Avenue one last time, where I stopped by a noodle place for supper, and then headed back to the hotel to pack up, feeling strangely at loose ends after all the excitement and attention.
My flight home was another early one, so I was in bed early with lights out.
And that, my dear friends, concludes my story of “A Lab Rat in Pittsburgh.” As I write this, a team of researchers are going over my data and sorting it into useful bits that may help to provide more clues into what’s going on in the autistic/Asperger brain.
I am touched and honoured that CEFAR chose to invite me to take part in their study, and blessed to have had an opportunity to help with this research and maybe help decode some of the mysteries of this strange and sometimes wonderful condition.
I’m very grateful to the CEFAR staff, the staff and researchers at Carnegie Mellon’s MRI lab, and the staff at the Hampton Inn (Pittsburgh University Center) for their incredible kindness and generosity to me. I was looked after like royalty from the time my plane landed in Pittsburgh until “wheels up” on Wednesday morning, and never once felt lost or at loose ends or like I was having anything other than the time of my life.
I am also very touched by all my loyal friends and readers who expressed an interest in my trip, followed me on Twitter and Facebook, and encouraged me to step out of my comfort zone a little bit and go travelling during my busy work season.
Thanks for reading.
–Asparagus Girl. 🙂
Pictures from My Trip