Posted by: E (The Third Glance) | June 17, 2012

“Significant disruption to daily living”

Most of the time I see my autistic traits as simply part of me that I am quite happy to accept and function with and around. My special interest and perseveration is driving my career (how cool is that?! I get PAID to perseverate!), and I’m able to structure my day so that I am safe, comfortable, and happy throughout, wearing clothes and eating foods that don’t set off my sensory system and make me go into insanity mode. Most of the time, I can control my environment so that I can just “be”. And this is a wonderful feeling. Truly the pinnacle of “autism acceptance”. No one cares if I stim in my office. I get my work done, and its good quality, so that’s what matters. In general, I’ve found and made the best possible environment for myself so that being autistic isn’t disabling on a constant basis. Sure, the accommodations that I create for myself could by some (many) people be considered “a significant disruption to daily living”, but for me, they’re just a part of my life, and that’s just fine with me. That’s one of the reasons I resisted the idea of an Autism diagnosis in the first place – I get along just fine from where I’m looking, thank you very much! “Significant disruption”? Not a chance.

But there are some times that my perfectly constructed world breaks down. Some times when things go wrong, and that I’m reminded that all my quirks and difficulties and sensory and social sensitivities and other “Autistic” things truly have the capability of becoming disabling, in an extreme way. Maybe it’s because I’ve been so over-stressed due to orals. Maybe its because I had to use up all of my spoons and then some on Friday morning because a professor screwed up and dragged me out on the beach in high tide and my pants got soaking wet and it was all I could do to make it through the lesson, that I had to tap into my reserves to even make it through the hour and a half class, and then I had to make it HOME (45 minute bus ride, IN WET PANTS 😦 😦 😦 :(). Maybe it’s that I’ve been having trouble convincing myself that I want to eat lately (eating is a sensory assault, and I’m stressed out about other things and just haven’t been feeling up to it) and as a consequence that I haven’t been eating well. I don’t know what it was, but last night, everything piled up and came to a screeching halt.

I’m ashamed of last night. I know I shouldn’t be, and I’m not even sure why I’m blogging about it, except to think it through. A friend of mine (from my lab)’s significant other (whom I am also somewhat friends with) just finished his PhD. There was a party at his advisor’s house that both he and his partner invited me to. They promised good food (and they’re Indian and cook amazingly, and as I said above, food would have been good) and good company. I told them I would go. I had every intention of going. I was a lot stressed out about it, because I don’t really know his advisor, and his advisor doesn’t really know me. I didn’t want to show up and have her open the door and say “who are you and what are you doing here?” and I didn’t want to have to try to answer that. So I spent the 2 hours before the party convincing myself that it would be OK. Both of the people being honored wanted me there, and this was for them. I could do it. I practiced scripts, rehearsed, made cookies to bring, and even got directions to the advisor’s house. The party was supposed to start at 6, but where I am, that usually means 6:30 or 7. I’m obsessively on time to everything, but I really didn’t want to show up at 6 and be the only one there. So I left my apartment at 6:15. And got down there at 6:40. And panicked. “what if I’m late? What if there’s no one there yet? What if I’m at the wrong place? What if I don’t know anybody?” I drove around the block twice. Parked. Sat in my car and tried to convince myself to get out of the car and go up to the door. But I couldn’t do it. I had exceeded my threshold of functionality for the weekend. I think I could’ve done it if I hadn’t been alone – I really prefer to go to social things with a guide – someone who I can follow and do what they do. But my friends had been there well before, and I couldn’t go with them. And the other students who I knew who were invited were out of town and not going. And I couldn’t convince myself to get up and go in. After about 20 minutes of this, I gave up and drove home. I haven’t ever given up on something like this in a long time. I knew it would be a stretch of my abilities, but I thought I could do it. I practiced. I prepared. And I got so close that I should have made it. But I was wrong. I broke a promise to some friends, and didn’t go.

When I got home, around 7:30, I curled up on the couch, shaking. I haven’t had a full on meltdown in a while, so I guess it was due. And then I slept for 11 hours. I know I screwed up. I know I probably could’ve done it. If I’d just gotten through the door, it would’ve been OK. But that door was more of a barrier than I had the resources to breech. And in trying to muster the resources, I depleted myself past empty. Just another reminder that while I’m usually able to “pass” as quirky and quite a bit odd (which is par for the course in academia after all), that being Autistic really can cause a “significant disruption to daily living”, even from my point of view.

—————————————–

And this is probably going to be the last blog entry until after orals, though who knows… my exam is Thursday morning, and I’ll be in full on study mode until then. The answer to the Stenophagous animal question will be posted after my exam is over. The answer hasn’t been said quite right yet, but you are very close (for those of you who care…) Good research guys!

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Responses

  1. I am sorry to read about this experience, I can totally relate.

    I’ve had similar experiences with turning around on the way to a party that I felt I should have gone to. And I had far less good reasons than you have, since I am not autistic. I just sometimes cannot handle parties. And I felt always terribly guilty and stupid after doing that.

    However, I have arrived at the conclusion that this feeling is not well founded.

    If I throw a party, and people don’t show up, I am not offended at all. I always assume people have good reasons to cancel and I would hate if people would feel forced to come out if they don’t feel like it.

    Parties are for the guests, not for the hosts…. it is very likely, I think, that your friends feel this way too. Plus, when hosting a party one is usually so busy that one hardly notices if some people don’t show up….

    Success with your orals! 🙂

    • Have you read this? http://www.carlkingdom.com/10-myths-about-introverts

      Autistic people aren’t the only ones who sometimes suffer during “normal” social events.

      • Thanks! This is a nice article.
        I know that I am an introvert. What puzzles me is that sometimes the introversion can just become much stronger seemingly out of the blue. That is something I still don’t know how to handle and it causes me quite a lot of social stress.

  2. Oh E. I’m sorry you went through this. While reading I was reminded of a book party I was invited to recently and really had to go as it was for a close friend. But I dislike these sorts of things and prefer not to go to them. However I went and felt completely “out of it” kept looking at my phone to see the time, ate food I wasn’t hungry for, and generally felt awful that I was miserable, because I “should” have been cheery and sociable for my friend’s sake. But the truth is, I hardly saw my friend, she was swarmed by well wishing people and while I know she was happy to see me, she certainly would have understood if I hadn’t gone.
    I have become more aware of what I’m capable of as I grow older and I have limitations, we all do. Acknowledging and learning what yours are is a good thing. I’m sure your friends would have felt terrible had you forced yourself to go when you felt so awful. It’s this idea of what we “should” do, “should” be capable of, that makes things so painful.
    When the truth is, you’re doing great. ❤

  3. 🙂

  4. O, E, I can’t imagine your friends will feel upset you didn’t go. Lots of people have reasons for missing a party they agreed to attend, including just not feeling well in any sense of what that might mean, thats expected. I hope you don’t beat yourself up about that, they will understand. From where I sit reading this it sounds like you did a good job taking care of yourself and knowing your own limits. Take care, my friend and good luck on Thursday!

  5. Sounds to me like you made it to the party just fine 🙂

  6. That situation is perfectly OK. I don’t think anyone would blame you for not coming. Most people have days where they can’t face a socially intensive & noisy situation like a party, and if your friends know you well enough to know that you easily get overloaded then they will be even more understanding.

    I do understand why you feel bad about promising something and then not be able to do it, but I really think it is OK in this case.

    I never promise to go to a party. If invited, and if I think I might be OK to do at the time, I say that I ‘might drop in during the evening, but I can’t stay more than an hour or so’. If I have planned to go to a party (ultra rarely happens) and can hear before I enter that there are too many people in there and too much noise, or other reasons I think I’ll be miserable then I’ll just turn around and go home. Other reasons could be: feel overloaded already, don’t know anyone, come alone e.t.c. Everybody who knows me, knows that I can’t cope well with noisy places and it makes things easier. People don’t take it personal* that I leave a place that is overwhelmingly noisy.

     
    *I hope!

  7. I think you are fabulous! Thank you so much for sharing this… it provides so much insight.

    I agree with some of the other comments that it is critical to be aware of your own limits. That is an important understanding. We want others to respect and honour our limits… and… we need to remember to do this for ourselves as well!

    Thinking about you – Sending positive thoughts your way for Thursday!! Yay!!

  8. [huge huggles — and if you’d like real-life hugs of any type, just let me know]

    Darling, you are far from the only one who does this sort of thing. In fact, I wish you knew just how often I do exactly this… or go to parties so anxious I spend the entire next day with a raging stomach ache… or get drunk and make an idiot of myself because that’s the only way I can stand the overstimulation… At least I have, after many years, learned to avoid having actual meltdowns at the party.

    It’s ok. We all have our limits– even neurotypicals do, although often about different things. Our limits don’t make us lesser people. And they don’t lessen the love and admiration of the people who know and care about us.

    Take care of yourself. And best of luck on orals. And please let me treat you to something enjoyable (your pick) afterward!

  9. I’m sorry for how stressful everything has been.. I agree with the other people above me who say that was totally okay in that situation! Also, good luck with the orals!!

  10. I understand how you feel. My life sometimes seems like a string of things I wish I could do. I have spent years feeling terrible and blaming myself for a lack of character or strength. Today I understand why I lack consistancy. When you wrote:

    I had exceeded my threshold of functionality for the weekend.

    I cheered. Daily I teeter on the edge of my functionality. Being a spectrum mom with a spectrum hubby is hard work!

    I am so happy for all the good you are able to do with your life–pursuing your passion and working so hard. I appreciate your effort and sharing your life.

    Lori

  11. Parties. That is totally understandable. Parties are HARD to deal with. Being paid to perseverate is pretty awesome, though. 🙂

  12. ((hugs)) Days of fine and days of significant disruptions. ((I understand)) And so will your friends. Be kind to yourself, don’t shame yourself. It’s okay.

  13. I can relate to this. There was one workplace party that I was invited to, held at the home of one of the managers. I couldn’t find the address. It was dark. My night vision is terrible and I had trouble reading the street signs. I walked up and down the block several times. I finally asked a passer-by for directions. By the time I found the street the house was on, I was already quite late. I found what I thought was the right house, but there was no sign saying “this is where the party is.” (Usually when one of my co-workers has a party, they put up signs showing people which house the party is at.) I was suddenly afraid I’d go up to the house, knock on the door and be informed there was no party, or I was there on the wrong day or at the wrong time or I had the wrong address. I walked back to my bus stop and went home.


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