I have been working on this post in my head for a long time. I go back and forth on how to present this subject. It's one of a very delicate matter that carries with it a lot of sensitivity to me. To be honest, I have not wanted to talk about it, as I was afraid I'd be told I was just being exaggerative or that I need to stop making excuses for myself. I hide this secret inside of me away from everyone, because I feel ashamed and like I have no assistance in making it better.
So do you want to know my secret-y secret that I hide away from anyone and everyone that I can?
Topographical Agnosia Or Place Blindness.
What is place blindness?
Taken from here:
"Often confused for being absentminded or lazy, people with topographic agnosia have no innate memory for places. Just as a person with face blindness has a short-term memory for faces, the person with place blindness has a short-term memory for places. This means, that a person living on a street for five years would not be able to recognise the other houses on the street or in the neighbourhood if seen out of context. In testing for place blindness, a husband asked his place-blind wife to keep her eyes shut while he drove around their neighbourhood. He stopped in front of a house four houses down from theirs and asked her to tell him if she had ever seen it before. She hadn't. Despite their many walks in which they had passed it, she had no memory of it. Topographic Agnosia also explains why a person who loved hiking and being out-of-doors would never go by herself and couldn't remember the individual hikes. Unless they included waterfalls or a unique bridge or old growth, all the hikes looked the same to her."
This means, that to me, every time I go somewhere it is like the first time, even if I have been there many times before. If I go somewhere everyday and get a strong sense of landmarks committed to memory, then I will be okay, but if I skip several days in a row my memory will begin to erase itself and I will have to re-learn the route. This means that if I were brought into an unfamiliar area I could not find my way back home from which I just came minutes before.
It is not just limited to driving. I get just as lost on foot, as well. If I go out different doors in a big building I cannot find my way back to a parking lot. I did this one time when I dropped my daughter off for practice at night at an unfamiliar part of the school. I must have accidentally went out different doors and I spent 45 minutes walking around the block and the school until I finally had to ask someone which way the parking lot was. It was humiliating. Or, the other day I went with Beans to his Halloween party. The teacher wanted him to participate with the mainstream 3rd grade class, so him, his para and I went to the classroom. I had been to this part of the school a handful of times over the last few years. He (as I predicted) became overwhelmed by the noise in the classroom, so his para asked me to take him back to his classroom while she gathered up his treats. I thought no problem, right? Yes, problem, Upon exiting the room I had not remembered to consciously note any landmarks. I had no idea which way was which. It was essentially to me as if someone had picked me up and sat me down in the middle of an unfamiliar, foreign environment, even though I had just came from that hall not seconds earlier. I stood there trying to remember anything that could help me navigate my surroundings, then pondered if I could make it back on my own, so I tried one direction hoping I get a glimpse of recognition on the other end of the hall, but no, so I thought the safest thing to do was to wait for his para to come out of the room before I got us both hopelessly lost in the building!
I find driving difficult as it is. It's hard for me to multi-task in the way of paying attention to so much stimuli at once. Add place blindness on top of it all and I am hard pressed to go anywhere new or with high traffic. So many things need to be done before I can even attempt to go anywhere I am not familiar with. I used to rely very heavily on my Garmin, but that was in my purse that was stolen a couple months ago. That navigation system was my safety net, my saving grace. Now, I'm back to the old days where if I get lost while driving I have to call for help while trying to describe landmarks, because I don't remember streets and I have absolutely NO idea where north, south, east and west are. These things are way above my ability to even comprehend how others know them. So, the thief that took my purse has no idea, nor probably cares about how much of a predicament he put me in.
Other coping skills include:
*heavy use of google maps where I can visually get a sense of what the destination looks like.
*written directions with lots of landmark info written in, like when there will be a stop sign, what the destination is by ect
*how many stop lights I have to go through, so I don't panic and think I've gone too far.
*a back up route, in case the one I have is blocked for some reason
*lots of extra time in case I get lost
*someone to go with me
*No night driving unless it's an emergency or only a few blocks
This issue is by far the most damaging to my life. This issue is the one that drove me to get a diagnosis, because I was hoping that there was some therapy, help or assistance for it. Not only was there not any, but I got the usual agoraphobia/generalized anxiety excuse tacked onto my Asperger's diagnosis, which was very upsetting to me, because I really wanted help with this. The clinician was not only ignorant of the disorder, but insisted that it was my anxiety that was causing to me to have these issues. I insisted that getting lost most definitely causes anxiety, but it is not caused by anxiety. I was offered social skill therapy and that was virtually all. I left depleted and misunderstood, even more so than I was before going.
So, I try to make my way through as best I can. I hope by sharing this I can help others who are out there suffering in silence. It is estimated that up to 1/3 of those with Asperger Syndrome have place blindness. I know that I can't be the only one and I know there has to be more research done on this difference to help people like me understand the way we perceive visual/spatial information, but the only way that is going to happen is if more people are aware it exists in the first place.
More info on Topographical Agnosia:
Getting Lost
