Posted by: E (The Third Glance) | March 29, 2015

When supports disappear… life as an autistic adult

I’ve been pretty quiet this past year. It’s been a very intense past 18 months, between major health problems, teaching, research, grad school, and general craziness. I’ve gotten through it, in large part, due to having built up a great world of support around me. I’ve been living in a safe environment for the past 11 months (!), and what a huge difference that has made. I have wonderful friends and an amazing roommate, who are all there to help me when I need it, who go out of their way sometimes, to make things accessible and “E-friendly”. I’ve gotten to a place with my research where I know what I need to do to finish my PhD (yay/yikes!). In short, it hasn’t been easy, but I’ve been thriving in ways I never knew were possible, because I’ve managed to shape my environment in a way that minimizes my difficulties and allows me to concentrate on other things. It’s also given me a lot less fodder to write about, and a lot less time to write it in.

Now I’m on a major adventure. I’m currently 8 time-zones away from my life, friends, and support network, in a new country with different cultural norms. I’m here for 2 months. And I’m struggling. It’s not that I don’t want to be here – I really do, and the opportunity I’ve been granted here is incredible. I’m learning a lot, and it’s a great thing for my academic career. Yet I’m struggling mightily, because my support system is nearly half a world away. “Support” can mean many things to people. In my case, I’m not talking about formal, institutional, or government-based support. I’m talking about supports that people I trust help me with. Little things that I and others around me can do that make it possible for me to function. This post, however, does not depend on that definition of support – it applies to any and all supports that are in place to help someone with or without a disability function.

I learn how to do new things and go to new places by watching others. When I’m in a new place, I really need a guide. I need someone to follow, who can take me to the relevant places and events, and who can introduce me to the relevant people. Here, I don’t have someone to show me how to properly use the bus, or how to go to the grocery store, or how and when to interact with my colleagues. I don’t understand how to go to a restaurant, and a shop? Not even a little. It’s not like it is that much different from my home, but I’m not very good at generalizing these things. I’d have these same issues if I moved even 30 miles away from where I currently live. It’s really tough to go somewhere alone for the first time for me. After that first time, it’s easier, but often that first time is near impossible to do by myself. The action potential required to initiate something, to get over the initial anxiety and apprehension, is so incredibly high that I often can’t even try. I am getting better at it, and have been for years (I can now travel to a strange city on my own for 2-3 days, stay in a hostel, and explore, at least a bit – this is a HUGE accomplishment for me), but sometimes it all gets to be too much.

This isn’t to say that I’m not slowly learning and adjusting to being in this new place. It’s just that my learning curve is much steeper right now than it would be if I had someone to help, and the amount of mental effort involved is enormous, and takes away from the other things I need to do, like research.

Anyway, this is all a way of saying that supports are important, and they are different for every single person. For me, a huge help comes when I can have some company while adjusting to someplace new. It’s not that I can’t do it on my own. I sometimes can. It’s that doing it on my own takes significantly more energy and effort than I have to give. With that support, I can learn to navigate a new situation and still be able to communicate and work and do what I need to do. Without it, I might learn how to navigate part of the situation, and after, I end up huddled in a corner, unable to talk or function for hours or days.

While this isn’t the only aspect of being autistic (not even a little bit) or the only thing I have supports or workarounds in place to help with, it is currently something I am struggling with a lot. Because this is taking up so much of my mental effort, my usual ability to handle sensory overload is greatly decreased. My tolerance for sounds, textures, tastes, and smells is much lower than it usually is. I’m stimming a lot more (and not the good kind of stimming, but the “I’m super agitated and panicking, and about to crawl out of my skin or have a complete meltdown” kind of stimming). My ability to carry on a conversation or articulate my thoughts is very low (particularly awkward when trying to converse with my new advisor), and my ability to initiate pretty much anything is almost nonexistent.

It’s all connected. My brain has a finite amount of effort it can expend. When I don’t have the support I need, my available brainpower gets significantly overtaxed trying to compensate. That’s what supports are supposed to help with. They help us live on equal footing. They give us the tools and opportunities to be ourselves. They help us where we need help, but allow us to thrive on our own power. They don’t assume that we can’t. They help us so we can.

To those of you who read this who have acted as my ‘guide’ before, going with me on adventures to new places (even if that new place is a new grocery store or the little store or restaurant down the street, or inviting me over to your house for dinner), please know how much I appreciate you.


Responses

  1. Thank you for sharing your challenges and successes. My thoughts are with you in support!

  2. God bless you for having the courage to step out and do these new things. Keep trying.

  3. Reading your post tonight, I found myself identifying with a lot of it. I’m not autistic, but I do suffer from intense social anxiety. Going to new places by myself is especially tough for me, too. I feel awkward and anxious in social situations, even when I’m with someone. Meeting new people and trying to make “small talk” takes a lot out of me. I do often eventually end up enjoying myself, but it’s all pretty draining and doesn’t come to me easily. I do feel a whole lot better when I go places with a friend, rather than alone. If I feel this anxious , I can only imagine how you must feel! Sometimes, I wonder if “the spectrum” really includes all of us!

    Best of luck with your travels and new adventures!

  4. Sending spoons and shiny river rocks and love❤
    Thank you for sharing your experience… ❤

  5. Thanks for sharing your adventure. I love that you are traveling and experiencing a new culture – because my daughter loves to travel and it gives me some insight on how to help her prepare. Thanks.

  6. I give you much credit for being able to live and travel independently. I don’t think that is very common, even among higher functioning people like myself. Support for me means having a “help” person to go with me wherever I go when away from home to keep me balanced with all the sounds and smells out there. I am grateful, however, to be able to get out and I am sure you are, too. God bless you in your endeavors.🙂

  7. Thanks for the post. I can see how difficult this would be for an autistic person, but it is a similar problem for neurotypical people too. NTs are much less likely to admit they need the supports around them that you speak of, but family and friends are supports, and moving to a new city takes you away from those supports, and it is very difficult. Maybe there isn’t as big a difference between ASDs and NTs after all.
    (BTW I have an autistic son.)

    • I think honestly, the differences aren’t nearly as big as we make them out to be. Certainly, the way I experience the world is different, but that doesn’t mean I don’t experience the same world that you do. I think for me, one of hte biggest differences that I’ve observed between my “friends and family [not family]” support network and NT friends and family support networks, is that I rely on them as social guides and touchstones, in addition to emotional support, which I think I handle differently in general.

  8. They do say that you appreciate something much more once you no longer have it, and it is often very true. However, I do hope that you will find new friends and people who will be understanding and willing to help out as best as possible, with where you are now.

  9. “The action potential required to initiate something, to get over the initial anxiety and apprehension, is so incredibly high that I often can’t even try.”

    Yes yes yes! This is such a major hurdle for me in everyday tasks. People don’t realize! I can research and write, but going to a grocery store? Especially an unfamiliar one or at a busy time of day? That takes more out of me than a full day of work!


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