To Test or Not to Test?

One of the decisions you may need to make as a Prosopagnosic (PA) is whether to get tested or not. Its something I decided to do awhile back, while visiting London (see previous posts). I also arranged to meet Matt, another PA from my FaceBlind group list, while I was there in London. We talked a lot about whether it was beneficial to get tested.

Once you do get tested there is the burning desire to make sense of whatever you've just learned about yourself, and it is often easiest to do this by comparing notes with someone else who has taken the tests, or at least, understands the condition. All these new thoughts come tumbling out of your mind, as you try to reconcile and reorder your own image.

I met Matt (see photo) just after I got tested, and wished he had already been, so I could talk to him about specifics of the different tests. There is an implied "code of silence" about the PA tests, so as not to bias the results of future test takers. Matt took the tests a week or so after I did, and had a similar reaction to the results.

What follows in a short set of text messages between Matt and I about his initial reaction to getting tested. I thought it was something other PA's might appreciate. Thanks to Matt for his permission to share these thoughts:


Matt: "I am possibly one of the worst people Dr. Brad has ever met. I found that exhausting. And funny - I laughed through most of it, esp putting the faces in order:)"

Me: "Yes! That was the tough one. Congrats, you're mad;)"

Matt: "Hooray for madness, then. I'm in a pub having a soothing beer on my own, but I'm bursting to tell people that my stupidity has a name now. Perhaps I won't tho."

Me: "Wish I was there to have a pint with you. Tell them all! Cheers!"

Matt: "You're right tho - the people who need to know are the strangers who wouldn't understand. Those I feel I can tell are the friends I can ID anyway. Eeek."

So in the end, you have an official diagnosis, and it is somewhat of a relief, but then who do you tell?

Meeting Matt in London

Matt from my online Faceblind group, as I posed him in bad light so I could get him with the London Eye in the background. Tourists.

We agree to meet while I was in London learning about and getting tested for Prosopagnosia (PA). We both thought it would be interesting to meet someone with a similar lack of ability for recognizing one another. He conveniently posted himself directly beneath Big Ben, and waved to me as I approached after spotting my unnaturally red hair. I was relieved after that hard part was over, and thankful that he had made it so easy. I always have trepidation when going to meet people.

Matt again, finishing his slides on the Carsten Holler Exhibit at Tate Modern in London.

It was interesting to hear his anecdotes, and quite refreshing to speak to someone who knows what it is like to be so confused on a regular basis.

Showing off his advanced wheelie style. It takes no facial recognition ability to enjoy a good slide.

Matt had previously met someone else from the same online group who actually lives just outside London and was featured in an article in the Times Educational Supplement which I will link to in a subsequent post.

This was my first meeting with another PA, and based on my meeting with Matt, I would highly recommend it.

One thing we ended up doing is comparing anecdotes, which always happens because you just want to be able to tell people the weird situations you live through, and have them understand. We discussed coping skills, which can be valuable. I also had lots of questions about coming out to people about PA and his experience with it. He has come out to more people than I have, even though he has known about his PA for a much shorter time, partly because it is better that way in his work environment, partly because he is more brave than me.

Matt has been in touch with Dr. Duchaine, and intends to be tested quite soon. I found myself desperately wishing, even as I was taking the tests before I met with him, that he had already taken the tests so I could compare the experience with him. It is just not the same talking to a Neurotypical (NT) person about your reaction to the tests. I guess that is a good reason for us to keep in touch.

Testing Day 1

Finished the first day of testing with Dr. Duchaine. It was intense as I thought it would be, requiring serious concentration for a couple hours. The team at the Institute of Cognitive Neuroscience, was amiable and low-key, which helped reduce the pressure (I'm very competitive) of testing. It is great to talk to people with such a depth of knowledge on this obscure subject.

It solidified some ideas I previously had about my own face perception ability, and connected the dots in other areas. I won' t go into detail about the tests or how I did on certain sections. My results were as I would have assumed in some areas, and surprising in others. I thought I did MUCH worse on one section than my scores showed, indicating that I may not have good grasp of my own ability.

At this pointI highly recommend getting tested. It really helped coalesce, in my mind, a definition of my specific case of Prosopagnosia. This will eventually help me tell my story to others.

Tomorrow, Day 2 of testing.