Tuesday, November 6, 2012

Where Am I? Confessions Of A Place Blind Aspie


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














23 comments:

  1. Wow, thank you for sharing this. I have been so frustrated and upset over this very same thing, I didn't know that it had anything to do with the other things I struggle with. My husband is annoyed to no end with me, "Just pay attention!" Well meaning friends and loved ones constantly tease me but it is really upsetting. I'm disappointed that there isn't a therapy to help with it, I have my phone navigation that I use constantly but it would be wonderful to not have to be lost literally everywhere I go. I'm sorry you had such a hard time with the people you worked with for your diagnosis.
    I have not sought a diagnosis for myself because I am afraid of how people would react, my son has Asperger's and I have huge fear and anxiety of Doctor's and others thinking it's all in my head.

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    1. I was absolutely terrified when I went for a diagnosis. I thought for sure, she was gonna tell me I was just an anxious, depressed hypochondriac and the only source of comfort (the autistic community) that I have ever found was one in which I really did not belong to. I was so relieved when I found out differently. I even made her repeat it to me right before I left my last appointment that she was 110% sure as sure could be that I am autistic. She found this amusing, but obliged. I needed to hear it, so that I wouldn't be doubting myself later, thinking I tricked the clinician into dxing me!

      Yes, my husband also tells me to pay attention. He is particularly gifted in memorizing routes and even linking up old ones with better ones based on memory. When we moved here he memorized and even perfected routes of coworkers that had lived here for years in a matter of months. He just doesn't get that my brain works so differently than his. He is a little more compassionate than he used to be, but he will never understand.

      Thanks for dropping by and commenting!

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  2. I do this too! I print out google maps and try to study it over and over again. I also do google earth now to locate landmarks so that I know what to look for.

    There have been times when my mind has gone completely blank, but I know that I have been to the place before, however, I cannot remember where to go at all. It has caused me to panic many times. That is one reason why we got me a phone so I could call my husband in case I got lost. I always get lost.

    It used to drive my mom bonkers because I would only take the route I knew to get places - it did not matter if it was longer it was the only one I memorized.

    It has caused me anxiety and major meltdowns because of this.

    Thank you, thank you, thank you! You sharing about your life has helped me so much and continues to do so. It seems that we have had so, so many similar experiences!

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    1. I do the route thing, too. Sometimes, I will even have to go clear back from a familiar place (like home) to get to another place, because I can't go from point B to another place. I only know one way to get there and that is usually from home or another really familiar place. I find that I have no way to explain that to others. They just think, well you are close by, why don't you just swing by X place on your way home from Y place?

      I'm glad that this helped you and thank you for replying. It help me to know I am not alone!

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  3. Outstanding! This describes my father perfectly. I will be sharing this post with my family. Very, very helpful!

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    1. Thank you for reading, commenting and sharing!

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  4. THIS IS ME!!!! OMG. I wish I had known it was an actual thing. I have to note landmarks, etc, going into buildings I've been in my entire life and if the store rearranges anything, you can guarantee that I will get lost yet again.

    I also can never find my car in a parking lot or garage. I have to write down where I parked every time.

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    1. I wish this was more talked about. I wonder how many of us there are? Especially, AS ladies? It seems the go to term used to be nonverbal learning disorder for us, but I think it was just female expressed Asperger's all along. If they offered therapy and life skills for this it would help so many of us, don't you think?

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  5. You are sooo not alone! I was doing research for a face-blind article when I came across information on place-blindness! I am always lost, especially indoors. I don't know why it is worse when I walk into a hospital, court building, large supermarket, but I'm always lost.

    I too stopped driving at night, and had that ever so lovely experience of having doctors add agoraphobia and generalized anxiety disorder added to my list of wrong diagnosis!

    Place-blindness seems to be more prevelant than many may realize. I must rely on maps (I'm great with a map!) and street names and numbers. I cannot navigate around using landmarks.

    Great post! Thank you.

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    1. I think those buildings are worse, because they all look the same. If I have to make my way in a hospital type setting I absolutely either bring someone with me, or spend some time making mental notes of posters and mnemonic devices.

      It's good that you have strong map skills. It makes things easier, I'm sure. I wish I did. It looks like an abstract picture when I look at a map. My brain just doesn't know what to do with the image I'm looking at, or how to transfer it to real life dimensions.

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  6. Thank you for writing about this. I have a mild case of place-blindness compared to what you describe.

    It takes me a long time to learn a new area. If I go somewhere unfamiliar I take my GPS plus printed text directions and a graphic map of the route. When I leave an exam room in a doctor's office, the first thing I ask is "how do I get out of here?" because I can't reverse the course I took to get into the exam room.

    It's interesting to read the workarounds and avoidance strategies we develop to cope with stuff like this.

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    1. Thanks for your comment. Yes, we come up with some interesting ways of coping! Some better than others, because I find avoidance to be in my bag of coping skills all too often. I need to work on that!

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  7. Thank you for writing this. I have so much trouble I cannot even drive. And walking around is almost as bad but less to worry about. I could not explain this to my husband or driving teacher. At last a name for it!! Thank you!!

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    1. Thank you for reading and commenting! I hope the more we talk about it, the more well known it will become, and maybe more research will be done to help identify us, as well as teach us ways to deal with this!

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  8. Omg. I never knew this was a thing! So glad it is not just me, definitely been suffering in silence with this one!!

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    1. Glad you have a name for it now. It is a relief to know that others have the same issue, that's for sure.

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  9. Oh yes this is me too! I must go by the same route every time or else I will get lost even when I have been to a place many times. I will get lost if I get out of a different door in a building and have to waste a lot of time circling the building. It has become sort of a joke with my son haha. But I find that it helps if I really concentrate to remember landmarks :)

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    1. Glad to know I'm not alone! Thanks for your comment!

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  10. Oh my, I am surely seeing myself in more and more of your posts. I had never heard of "face blindness" being something other people have, but it's sure a problem for me. My husband never forgets a face, and I never forget a name!

    As for the space thing...yeah. I can not use landmarks generally; they mean little to me. It's hard to give directions because I'm never sure if I'm right (I once sent my sister clear to the other side of town.) Street names and numbers are the only thing that work for me, and only if they make sense. My current town has odd, crooked streets. It took me a long time to figure out where I was when we went walking. It's a real disadvantage in games like checkers, chess, Risk...anything where I have to see the big picture. One-way streets are a nightmare.

    I laughed when I read the comment about doctor's offices, and houses...that's totally me. I commented to my realtor "I'm spacially challenged." He replied, "I noticed." I really hate it in a stranger's house when they say something like "Down the hall to the left, first door on the right..." I've often waited until nearly desperate for a bathroom to avoid that whole issue.

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    1. I hate verbal directions that are more than one step long, because I don't learn verbally. My brain won't hold the info as I go through the steps. So, down the hall turn left, and it the 3rd door on the left, would leave turning left, and guessing after that. lol

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  11. Thank you for writing this. I've had this problem all my life. Often people will give me directions TO a place which I will study hard. Then I get there successfully, but for sure I'd get lost on the way back. Have family members who have a wonderful sense of direction and mock me. I've rehearsed routes and spent hours on the road and always tried to hide the problem.

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  12. This is a terrific blog post!! I'm starting a new fb group for people with topographical agnosia. It's at https://www.facebook.com/groups/555581657886579/ .

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  13. I requested to join. Thanks for stopping by and commenting!

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