• Understanding Autism from the Inside

    “Academics came easily to me. The rest of life—not so much.”
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I’m ALWAYS Lost! Nothing has Changed; Place-Blindness on Campus; An Extremely Frazzled MFA Residency Experience

Does anyone else have to constantly look back at their life, and the things that they wrote in the past to remind themselves that they have been through this before?

Lately, I have gone back and read my old blog posts, even parts of my memoir to be reminded that just because I know what my autism looks like, I still fail to recognize it. I still fail to realize what is going on as it is happening, and although, in retrospect I can “name” it, I still cannot stop the manifestations from occurring. It is frustrating, infuriating, and I berate myself often. (I am working on it, but it is a hard habit to break.)

Many times I think just because I know all this autism stuff, that I can control it–or that I “should” be able to deal with it, and control my emotions, symptoms, deficits. What words do we even use anymore to describe ourselves?

I know I get lost. I have place-blindness. I KNOW THIS! I KNOW THIS! I KNOW THIS! But none of that knowing stops me from getting lost, nor does it stop me from panicking when I am lost, OR from having the inevitable meltdown that follows. Then, I get frustrated and angry with myself. Why? Because I should KNOW better. I should know myself. Clearly, I still need reminders.

From my article on Place-Blindness:

What is Place-Blindness?
Topographic Agnosia, commonly known as place-blindness, is a neurological condition that can occur separately or as part of an autism spectrum disorder. It is a form of “visual agnosia,” where the brain is not processing visual cues that can be relied upon to guide ones direction. Despite the fact that many people with place-blindness can read maps well, they often find themselves “lost” in familiar places. Their visual surroundings are not familiar to them. Place blindness is often seen along with Face blindness (facial agnosia) in individuals with autism or Asperger’s Syndrome.

While writing my last post about being frazzled and lost at the Disney resort on day one while searching for the Concierge, I realized that my place-blindness kicked in and compounded my panic and frustration. Then, I realized that several things that completely frazzled me at my MFA residency the week before was also due to place-blindness. None of this is news. I’ve wrote it all before…so why in the world do I always seem to forget?

This morning, I went back and read what I wrote previously about place-blindness, then I read what I wrote of my experiences in middle school and college. I should certainly not have been surprised that it struck over and over again, when I attended FDU for the MFA residency. I thought I had a handle on this thing. After all, I was armed with a MAP!

So what is going on here? I suspect a few things. Perhaps, the lack of generalizing ability? The ability to bring one experience to another and relate them together. I can do that! After the fact, but not during. Definitely, the manifestation of place-blindness when an unexpected deviation from the plan occurs.



I panicked every time I thought about driving to FDU for the MFA residency. I’ve never been there, I didn’t know the way. I’d never driven down that particular road, AND there would be no one in the passenger seat to navigate. My phone’s GPS works, but I cannot futz around with the GPS, the phone, or even the radio while driving. All that must be set in advance, or I would need to stop in rest areas to switch from listening to the audiobook that still needed to be finished before I arrived and the navigation. Not going to happen. The only solution was to memorize the directions–not an issue, I could do this.

I drove down through the mountains, even through the scary-as-hell portion through Keene Valley along the side of the mountain with a cliff looming to the right trying not to think about falling off the side of the mountain and plunging to my death in the river below, down the Northway, to the NYS thruway, onto the Garden State. Easy Peasy.

When I arrived at Fairleigh Dickinson University (FDU), I missed my turn, passed the entrance on left, made a u-turn, and drove onto campus. Then, at the stop sign, I froze. Where IS my map?

I flipped through my binder on the passenger seat to the map of the campus secure its document protector. (I am serious about this map stuff.) Only problem, I was unable to orient myself on the actual map. There was no YOU ARE HERE arrow so I had no idea where I was in relation to anything else. Damn map was useless!

Bravely venturing further down the unfamiliar road, inching would be a better description so it was a good thing there was no one behind me, I arrived at the security booth. The guard politely gave me directions to the dorms where I’d be spending the next ten days. All I got from the directions was, “make this right.” By the time I was at the end of the road, all the other directions were gone. Wouldn’t have made much difference really if I’d remembered because I instinctively turn left when someone tells me right so I still would have messed it up anyway.

At another stop sign, I sat scratching my head, and referred to the map again hoping against hope that perhaps just maybe I could find myself on the thing. No, such luck. So I pulled up behind a bus unloading a group of students. Not being able to pass was the perfect way to get my bearings or at least not “look” lost. It didn’t work.

After the bus cleared the way, I drove down the road and a guy walking past the car says, “you look lost.” Do you think? A second set of directions got me most of the way there, unfortunately, I needed a third and then sat in the car staring at the door building still unsure if I was in the right place. Thankfully, the administrator and an alumni were out front and waved asking if I was looking for the residency. I was, thank you!



I wish I could say that was the end of my being lost on campus, but it was just the beginning. I was lost each and every day. It didn’t matter that we walked the same way, or that most events were in the same room, I walked out of the building and was immediately disoriented.

Finally, I had my way down. It only took a week. Then, one morning, after my roommate and I made our way to the room in which the lectures take place, I realized I needed to run back to the room for things I left behind. (Also not an unusual occurrence but I mostly remembered before making it off the dorm floor.).

Getting back to the dorm was not a problem. I slipped into the side entrance, scooted into the elevator trying to move very quickly, hopped off on the second floor. Something was off. I didn’t know what.

I made the usual left and headed down the hallway. My room was not there. Maybe I wasn’t paying attention and went down the wrong hall, or just thought I turned left–because that NEVER happens, right? I back tracked to the elevated and turned right this time…no room down that hallway. Checked a third hallway, and then the fourth and final one. How is it possible to ALWAYS pick the right hallway last?

There. There was my room. 214. Only…something still was not right. I swiped my keycard. Nothing happened. Swiped again, jiggled the handle. Nothing. I looked at the keycard. 214, looked at the door 214. But–wasn’t my room on the left hand side of the hallway? This room was on the right. What in the ACTUAL fuck?

I stood there trying to get into my room for a long time–too long, and contemplated the very real possibility that I had finally lost my rabid-ass mind. That elevated took me up the Twilight Zone. I tried the card a few more times, jiggled the handle and stood there like a big idiot. I wonder if they have any emergency mental health staff on campus?

Now frantic, I checked the card again…214B. Damn it, 214! Why can I not get in my room, and when did Dr. freaking Seuss come and rearrange all the rooms on this floor.


Something…was not right.

On the wall next to the door, the room was at the end of a coordinator, was printed room numbers (I think), north/south (I can’t remember) all I remember is seeing an A. My card said B. What the??

Found my way back down to the elevator, took it to the first floor and stood outside it staring. Which way did I come in the building from?

I never entered the building from the side alone before that point, and I never did again. Front entrance ONLY if I was alone because although I’d exited and entered through that side door many times a day with my roommate to go to and from classes, I did not remember following her passed an elevator, through another set of doors and walking across the front lobby to the other side of the building and going up a DIFFERENT elevator!

By the time I figured it out, found the RIGHT room, I didn’t remember what I returned to the dorm for in the first place. Must have been my phone because that was on the table. I snatched it up, pulled a water from the fridge, and then somehow left the water behind as I walked out the door. How do you even do that?

Now I was running late for a lecture that was about to start, and although it is a big blur even now I am pretty sure that I passed two facility in the hall blurted out something about trying to get into the wrong room, then wondered why I said something at all. God woman shut up for once you sound like a moron, a big dumb frazzled dofus.

I don’t remember walking back to the lecture room, only that I was out of breath, hot sweaty, pulse racing, and heart thumbing in my chest. Could have been flapping at this point, definitely flushed. I know I sat down, but I couldn’t tell you what the lecture was that day, or anything that happened in the next hour. I only remember the sound of blood rushing through my ears, and that little voice in my head calling me names.

Now to be fair: Why would they use the same room numbers on different wings of the dorm. There are enough 200 series numbers to assign different numbers to each wing instead of having 214 A and 214 B ! Why not just have 200-225 in the A wing and 225-250 in the B wing…or something like that?? That way some of us would not be trying to get into rooms that were not our rooms, thinking it was our room because the numbers were the same! Just saying.


(Thank you very much, Dora the Explorer)

I carried around my binders while on campus–why didn’t anyone else have binders full of story notes? I carried my special kind of crazy proudly, and it is a good thing too. The cafeteria was diagonally across a beautiful expanse of grassy lawn from where we spent most of our time. I’d been there everyday for lunch, but I hadn’t yet walked there alone.

After a coaching session for reading work aloud (and in public–big freaking YIKES!) left me alone to walk to the cafeteria, I was very grateful for carrying all my binders. Remember the map in the document protector? (I know I am such a nerd–I am Okay with that!). I walked out of the front of the building without thinking. I knew I was heading for lunch. But–I SHOULD HAVE KNOWN I had no idea how to get to the building, what it looked like, or how I would recognize it when and if I made it there!

I was the one walking through campus with a binder open trying to following a map with my head down (yup I nearly busted my ass many times). I did find it, but when I walked in the building (entered into the building by a different damn door again) I was sure that it was NOT the right place. I didn’t remember that the cafeteria was on the second floor so it took a bit to figure out where to go…exiting the building and re-entering by any and every door that would open until I found the precise way I’d entered before, THEN I was able to find my way to the food! Late, nearly missed it entirely, and ate in a huge, frazzled, sweaty rush.

So what is my point? Hell if I know. I still get lost, even though I KNOW why and that it is inevitable. I STILL panic even though I KNOW nothing will really happen to me being lost on a college campus. The lost and alone feeling STILL triggers meltdowns no matter how much I KNOW.


My only tips:

Memorize directions and hope that there are no road detours.

Carry a map–always always carry a map.

Practice navigating unfamiliar places when YOU ARE NOT ON A TIME SCHEDULE.

Use a Buddy-system, so most of the time you are not lost because your buddy has your back, and you can chat away without worrying about not making it to your destination.

ONLY–when said Buddy is unavailable….revert to the Map.



Jeannie Davide-Rivera

Jeannie is an award-winning author, the Answers.com Autism Category Expert, contributes to Autism Parenting Magazine, and the Thinking Person's Guide to Autism. She lives in New York with her husband and four sons, on the autism spectrum.


  1. Pingback: Disney, Autism and Place Blindness: They Hid the Concierge from Me; Why would they DO that? - Jeannie Davide-Rivera

  2. Great article Jeannie! As someone who was with you at FDU, you hid your feelings of being lost very well cause you always looked like you knew exactly where you were going and what was going on! ? Need I also remind you, we relied on YOU to guide us during our Brooklyn trip. Hugs.

    • Ha! That’s because I’m from Brooklyn and there was Pizza involved! I also mapped it out in advance on my GPS on the phone. Then I memorized street grid and checked it a few times while we were walking around. Handy little thing that GPS. Although, I wouldn’t pull out the power of pizza.

  3. I wish it were easier to get NTs to understand situations such as these……… advice?

  4. Mine is intermittent. Sometimes I can go to a familiar place and not feel lost, sometimes I can go there and look down, turn around, or something benign, and, voila! It’s a whole new world! It’s more likely to happen when I’m travelling with somebody since I don’t have the mental resources to prepare my internal chants of placemarkers.

  5. Ms. Davide-Rivera,
    You are wonderful to read and charming and insightful with your writing.
    I look forward to reading more…as time permits.
    Also, do add to your list. Buy a Garmin (spelling may be off) navigational device. It talks to you. The best part is you can switch from pictures to words or words to pictures. It has saved my life…

  6. Place blindness . . .

    Is that what happens when we go somewhere and I look away for a while to read a map and then look back up and I have No Idea where we are, even if I’ve been there. It’s like the context for where I am can get lost if I’m not following it

    Sometimes that can even extend to a sense of where am I and what am I doing here, A sense of General discombobulation

    Or glancing at some part of something and suddenly finding it fascinating and trying to understand what it does, or that it looks alien to me.

    I am forever doing what you are talking about. It’s like I’ve forgotten that I’ve had the experience and then It happens again and I’m right back to reacting in the same way. This is especially true for anxiety. Something that creates stress or anxiety, or that amps up already existing high anxiety and I’m in shutdown mode. It’s like in the moment I can’t get a full handle on staying in the moment and knowing this is a familiar situation. Instead it feels new every time, I forget I have handled it before. It’s exhausting beyond words.

    Your comments about being able to bring one experience to another, to relate them together is I think spot on. I am not able to always do it in the moment (relate) and I end up immobile until the situation, or I, find a way to resolve it. Deviation from the plan, any kind of deviation, especially if I am already stressed goes from what are you doing (hubby driving and taking a different route) to all out please don’t go that way and me melting down internally.

    Bravo to you for getting from your home to the college. The drive for me would have been nigh on impossible.

    Similar thing with directions or any instructions. If I don’t write them down I might as well be SOL.

    Thanks for sharing and reminding me why I have the same struggles and challenges in my own way. Always thinking I should know better by now, but as my doctor said the other day, it’s your neurobiology. You wouldn’t question a Diabetic who needs insulin, you are not weak for needing help. I really needed her reminder, and yours. Thanks!

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