THE FLOATING NOTHINGNESS. LIFE WITH DEVELOPMENTAL TOPOGRAPHICAL DISORIENTATION

For most people, this is just a half-joking sentiment.
When I say it, it describes a disability I have that impacts me every day of my life.

I used to think that my lack of “sense of direction” was the same as other people’s. I thought they were just better at hiding it and compensating for it. But eventually, I realize that what I was so severely struggling with was not the same thing as what other people were joking about.

All my life, people didn’t take my disorientation seriously. They assumed that I was just exaggerating something everyone occasionally experiences. That I was just not trying hard enough to learn how to navigate the world. Or, possibly the worst one for me, that I just used this as an excuse to avoid doing things I didn’t want to do.

Today, I finally know the official term for this disability:

Developmental Topographical Disorientation.

Developmental Topographical Disorientation (DTD) is the from childhood on existing, lifelong inability to orient, despite the absence of any brain damage, neurological condition, or cognitive defects that would explain the disorientation.

The criteria for DTD distinguishes DTD from TD (topographical disorientation caused by brain damage) and other neurological conditions that may cause disorientation. DTD was first documented in 2009 and is a functional, not a structural, neurological condition. Current research on DTD states that the areas in the brain that are responsible for orienting are structurally normal, but their functioning is impaired, causing disorientation. What exactly causes DTD is currently still unknown.

While symptoms and severity of DTD vary in different people with the condition, the one thing they all struggle with is creating a mental representation of their surroundings, also called “mental mapping”.

For me, living with DTD is never knowing where anything is in relation to anything else, including myself. DTD is not being able to orient myself in the world and move around freely, always getting lost, and being in distress every time I leave my home.

When I try to mentally connect my location to another location, I just get a floating nothingness in my consciousness and body. Even if this location is as familiar as my own apartment. I can only orient myself with things I can see.

I have lived in my hometown for over 20 years, and still only know a handful of familiar paths. I can’t just leave my home and go somewhere random, because I won’t find my way back. I also can’t just go somewhere familiar but use a different path. I can only safely travel along familiar, practiced, memorized routes. I orient myself with visual landmarks. When I take a wrong turn, I don’t know where I am anymore. As soon as I am removed from my known path, I am lost in nothingness.

It is extremely difficult, often impossible, for me to correct when I go wrong. I may be able to backtrack as long as I don’t have to backtrack more than one turn – but I also struggle with distinguishing left and right, reversing directions, and mentally rotating things. My visual landmarks looking different from different angles can completely disorient me.

I struggle with estimating distances. I am okay with short distances comfortably within my immediate visual range, but something like “one kilometer”, “a football field”, and similar distances are completely meaningless to me.

I struggle following directions. I can’t follow oral directions at all. They must be written down, step by step. I can’t follow directions that only include “left”, “right”, “first intersection”, “after x meters”. I must have street names to connect the directional steps given to locations I can actually see in the world in front of me. I myself can’t give people directions at all.

Whenever I lose visual track of someone or something, I have no idea where they or it used to be in relation to myself, or how to find them or it again. When I am with someone and they want to separate for a bit, I have to ask them to come back to me – not me finding them, because I wouldn’t be able to do that.

DTD makes making changes to my environment difficult. Even if I would like to make a change, for example, because it would make things more accessible to me, environmental changes always mean I have to relearn my orientation strategies.

I always follow people to places. Classmates or teachers at school, friends on playdates, coworkers at my sheltered workshop, staff at my occupational and physical therapy, staff at the hospital or doctor’s offices, family members on vacations and trips, my husband whenever we go somewhere – it’s always me following them.

If there is nobody to follow, I regularly get lost. Some places have visual identifiers I can use to help myself. Others are so indistinguishable that I regularly don’t find them. I could be one turn away and not know it. Heck, I could stand with my back to it and be unable to figure that out, because what I see in front of me doesn’t match the visual landmarks I memorized.

I have many memories of searching, struggling, being lost, failing, giving up. Memories of missing appointments because I couldn’t find the place. Memories of endlessly wandering around buildings to try and find the right room. Memories of standing in front of closed doors, unsure whether they’re the right ones. Memories of walking into the wrong places, apologizing, starting over, searching more. Memories of eventually giving up and going back home. Memories of struggling to find my way back home.

Something that is very prominent for me, is the additional stress I experience because of having DTD. Everything that is already difficult for me, for example, because I am autistic, is made even more difficult by DTD. Having to orient without mental maps, solely via familiarity, visual landmarks, and memory takes a lot of focus and mental capacity which often gets tiresome.

DTD also means that I am unavoidably dependent on other people. This kind of dependency always raises issues of trust and safety, and it makes me vulnerable. I need people to not leave me behind, to actually take me where I need to go and to not harm me.

Not being able to go where I want when I want, especially virtually never being able to go anywhere alone, makes me trapped – and I feel that.

Being so dependent on others for orientation does mean that I miss out on a lot of things because there isn’t always someone able or willing to go with me. And if I would have to go alone, I virtually never can.

DTD makes it difficult for me to develop a sense of home. Whenever I move, I am completely lost. It takes me years of living in the same home to start developing orientation and connection within that small, intimate space. I have lived in our current apartment for 6 years now, and only after year 5 did I start to feel oriented. Not to mention my neighborhood or the larger area I live in.

Disorientation makes me feel unsafe. I feel unsafe all the time. And it’s not just a feeling, I regularly am unsafe. Constantly being and feeling unsafe can be traumatic, and it certainly is for me.

I feel no shame about my disability, I don’t get embarrassed, feel any guilt, or blame myself – but nonetheless, people’s reactions to my disability are difficult to handle. Especially given that I am often dependent on these same people for orientation.

For anyone with DTD, technology can be incredibly helpful. GPS can allow someone with DTD to find their way. Automatically finding a new route once you went wrong somewhere can be a lifesaver.

Having a phone can at the very least give you the security of always being able to text or call for help. Even if you don’t have a smartphone or have one but not enough data for GPS, text, and call can be immensely helpful.

I stick to familiar routes whenever possible. I don’t explore. I don’t deviate. I don’t engage in orienting when I am not feeling well enough to do so.

Because I can’t create mental maps, I navigate the world by memorizing routes instead. For these familiar routes, I create step by step directions for myself that use visual landmarks.

If you can associate left and right body turns with your visual landmarks, do that. I personally can’t, so I rely on landmarks only. For example, instead of “Left at the big red house.”, my cue would be “At the big red house I turn towards the park.”

Note that things along familiar routes changing can cause the need to re-learn the route. Changes like a house being torn down, trees being removed, a house being painted a different color, a new house being built, new landscaping in someone’s yard, a new construction site, seasonal changes to the plants – anything that visually changes the environment can cause problems for people with DTD.

If you can’t create mental maps, you need other kinds of maps to navigate the world. Luckily there are options here, and even though none of them cure DTD, they can help navigate the world while disabled.

Preparing in advance is crucial for people with DTD. Look up, plan, and practice routes you need to take. Make sure you have the support you need before starting to navigate.

Some navigational tools that can be helpful for people with DTD are:

GPS, a car atlas, foldable printed maps, online tools that create step by step routes from point A to point B, printing out routes from online tools, google street view, virtual tours of places, written down step by step directions that include street names, apps or printed resources for public transportation timetables and locations.

You can take photos and video recordings of places and routes to use as visual aids and step by step guides – or have other people take them for you.

Having DTD can mean that there are things you can’t do by yourself – either sometimes, or always. You may need to either avoid doing these things or get the support you need to do them. That is okay.

I try to avoid going to new places. If I have to go somewhere new, I don’t go alone. If possible I go with someone I trust. If that’s not possible, I tell someone I trust where I am going and with whom. That way I can inform my person of trust and have them come rescue me if something goes wrong.

When people drive me places, I ask them to always take the same route. I still don’t know where I am while driving, but at least familiar landmarks along the way let me know that I am where I’m supposed to be and minimize distress.

When going to unfamiliar places, I stick closely with the person I am with. I ask people to not just leave me behind. If we need to separate, we discuss a very clear and simple way of finding each other again afterward.
For me, this usually means that they wait directly outside wherever I need to be because anything else will likely lead to me getting lost. If they need to go somewhere, I will stay where I am and they will come to find me, as they don’t have my orientation problems.

I usually ask that people who take me places take me directly to the final location. That means no dropping me off in the parking lot, no waving me off at the front door, no goodbyes at the elevator.

Navigating the world is difficult for people with DTD. Minimizing avoidable travel means minimizing exhaustion and distress from navigating, as well as minimizing possibilities of going wrong and getting lost.

Go to the bathroom before you leave your home every time. Always have your necessities (food, drink, tissues, medication, etc.) with you. That way you minimize the times you have to deviate from your planned route. Which in turn minimizes the risk of getting lost.

People with DTD often have difficulties with distinguishing left from right. There are many possible tools to help you do this, here are some:

Think about which hand you use to write, pretend-write or actually write to check which hand is your left/right. Write or have someone else write “L” and “R” on a part of your body. Get a tattoo on one side of your body. Always wear something on one side of your body. Think about which foot you use to kick a ball. Ask other people for help.

Always have a plan for what you will do if something goes wrong. This gets you out of the wrong, minimizes distress from something going wrong, and minimizes the possibility that something could go wrong.

Have someone to call or text, if you need help. Have someone who can guide you step by step. Have someone who can come pick you up. This can be a family member, a friend, a support staff, a taxi service whose number you have saved in your phone – anything that works for you.

I also recommend learning coping strategies for dealing with the stress of living with DTD in general, and more specifically how to stay calm when you do get lost. Because the more distressed you become, the less likely you will be able to help yourself. For me, stimming helps me cope with stress and distress.

Peer support is one of the most powerful tools any disabled person can have. Connect with other people with DTD. Share experiences, struggles, tips, tools, accommodations, official support, anything related to DTD – and to DTD co-occurring with other conditions.

You will feel less alone, less isolated, more understood, and you will both learn things from others and teach others things.

If you have DTD, being able to tell people that, and explain to them what that means, what supports and accommodations you need, and why can make a huge difference in your interactions with other people.

The more people understand, the more likely most of them are to accept, support, and accommodate.

I found this website for DTD. It has a forum attached to it. At the bottom of the forum page you can find a comprehensive online assessment tool for DTD.

The website, forum, and online assessment tool were developed by Ford Burles and Giuseppe Iaria who documented the first case of DTD in 2009.

Doing the online assessment doesn’t give you a formal diagnosis, but this is an official, scientific assessment tool. Burles and Iaria used the data they collected from this online assessment tool for their large scale DTD study.

I thank @AutSciPerson on Twitter. Their tweet sharing an article about DTD gave me access to the proper term for my condition.