Just a quick one: tomorrow morning I’m off to The Center for Autism Research (CEFAR), at the University of Pittsburgh, where I’ve been invited to be a “lab rat” for a study by Dr Nancy Minshew and her colleagues on the workings of the autistic/Aspergian brain.
I’ve done a lot of online research for CEFAR, and for other research institutes around the world, because I enjoy it and because I think it’s important for us Aspergians to take part where we can and help build a better picture of what exactly is going on, mechanically speaking, in autism. So because my name and data were already in CEFAR’s files, I got a phone call a couple of months ago asking if I’d come down in person and lend my cranium for some more in-depth research.
Although I was a bit hesitant at first (it’s a hectic time of year for me, work-wise) I was persuaded partly by a couple of good friends who bolstered my courage and reminded me that I’d feel like a knob if I passed up this opportunity — not just an all-expenses-paid trip to Pittsburgh, but the chance to be of help to others like myself who live with autism and Asperger’s.
And partly it was because I saw the Facebook postings of one of my heroes, John Elder Robison, who has Asperger’s himself. He was there just a couple of weeks ago, and once I saw actual pictures of the procedures, and of Pittsburgh itself, I was hooked. Hell, if he (and Temple Grandin — another of my heroes!) can do it, then so can I.
It’s two full days of being poked and prodded and examined: pencil-and-paper tests, an IQ test, verbal testing, a blood draw (to lend some DNA to try and determine whether something is going awry at a chromosomal level with us Aspergians), and the Piece de Resistance (for me, anyway): an fMRI, where they stuff you in one of those big noisy machines, ask you all sorts of questions, and watch the blood flow in your brain.
Why the hell do they want ME, specifically? you ask? Well, aside from my irresistible wit and charm <cough>, it’s partly because women are terribly under-represented in these studies: only 1 in 10 Aspergians are female. Also (like Mr Robison and Ms Grandin), I’m articulate about my experiences (or so they tell me), and I’m also very blessed in terms of being able to function more or less OK (unlike a lot of my peers — did you know only 12% of people with Asperger’s are employed at all???). This is in no small part due to my having been blessed with a lot of good, accepting friends and teachers over the course of my life, especially in the last 3 or 4 years: you know who you are. It would seem (without sounding too pukey about that) that this is my perfect chance to “pay it forward”.
Anyway, before I sign off here (I’m up at 4:45 tomorrow to catch my flight… good times…) I’ll leave the last bit to John Elder Robison, who describes exactly what the studies are about:
“I’ve come back from a fascinating visit with Drs Nancy Minshew, Marcel Just, and Diane Williams. They are using enhanced MRI, FMRI, and Diffusion Tensor Imaging (DTI) to see inside the brain. They are actually beginning to decode thoughts and feelings, rendering words like house or apple recognizable in images on the scanner, based on how our brains respond to the feelings the words evoke.
They are using DTI to generate maps of the connection pathways in the brain, making maps that look like incredibly complex wire frame sculptures. Those maps are showing some key differences in how autistic people pass information from one part of the brain to another and they may shed light on why some of us experience a midlife flowering of some reasoning powers.
Some of what they are doing is straight from science fiction but it’s real and holds tremendous promise for the future.
Are you interested in joining their study group? They are seeking people with an autism diagnosis, 45-70 years of age, and willing to travel to Pittsburgh. Write me and I’ll connect you, and read more about their lab here:
Anyway, I must get to bed, so that’s all for now. Follow me on Twitter if you like (@AsparagusGirl), and I’ll be posting updates as I go, as time (and Wi-Fi availability) permit!