Tuesday, September 7, 2010

Asperger's: Daily Experiences

My recent post on autism has brought over 1,500 people to this blog and became one of the most popular posts I have ever written. This makes me very happy because, for the most part, people get their information about autism from TV shows and articles that depict it as laughable and pathetic on the one hand and tragic on the other hand. In fact, it is neither. Autism is a way of being that has its advantages and its drawbacks. Different people experience it in a multitude of ways and relate to it differently.

The kind of insensitivity to autism that I made fun of in my post is caused by the lack of reliable, anti-sensationalist information about the experiences of people with different forms of autism. This is why I want to share with my readers how I experience my autism on a daily basis and what it means to me. Also, I am hoping that other autistics will read this and decide whether some of my techniques might work for them.

 As I mentioned earlier, I have "good days" and "bad days." On bad days, it becomes more difficult to manage my autism, while on good days I make use of a variety of strategies that make it difficult for most people who know me to guess that I am in any way different. In this post, I will describe the techniques I use on my good days, of which today was one. I remind you that my form of Asperger's is pretty severe, which means that not everybody who has it needs to go through a similar routine.

Before I leave the house to go to work, I need to imagine my route several times and in a very detailed way. Even though I take the same bus to work several times a week, I can't just leave the house without going over this entire trip in my mind. If I do, I might end up pretty much anywhere in town, which happened before. So I repeat in my head several times the things I have to do to get to work: "To the bus stop, get in the bus, get out on campus, then to Starbucks, then to the library, then to my office, then to my first class on the first floor." I also have to check on my wallet, keys, cell phone and Kindle very often, otherwise I will definitely lose them. So every 15-20 minutes I go over my "wallet-keys-cell phone-Kindle" routine.

This morning, I had to call a doctor's office to make an appointment. I'd been putting off this phone call for weeks because talking on the phone to strangers is still one of my biggest challenges. I need to know exactly what they will ask me and what I will respond because otherwise I might get flustered and forget answers even to the simplest questions. Once, a person I was talking to asked me my name and for a horrible 30 seconds or so I had no idea what to say. So I faked a fit of coughing that allowed me to figure out what the answer was. This is why I'd been suffering from an ear-ache for weeks instead of calling a doctor. I wish such things started being handled over the Internet.

When I arrive at work, I know it's highly likely I will meet colleagues. It takes me a while to recognize even the people that I know very well and especially to remember their names. So every morning I prepare a couple of phrases that I can say as soon as I see a familiar face. This gives me time to get my bearings, realize who the person is and what they are called. Usually, the sentences I prepare have something to do with weather. Today, it was "Finally, this horrible heat is over." I keep repeating this sentence in my mind all the time I walk to my office and say it every time I meet someone I know.

Today, I had two committee meetings with people I had never met before. When I was younger, nothing terrified me more than having to meet a group of strangers for the first time. Nowadays, however, I manage such situations perfectly well if I have had a chance to prepare for them. I do little practice routines in my head of what I will say when I come in and what I will do if there is an unpleasant pause in the conversation. Of course, there is a huge problem of remembering the names. The first thing I do when somebody tells me their name is forget it completely. I've tried different things that would help me retain people's names but nothing has worked so far. I get so concentrated on saying what I need to say when meeting someone that everything else just escapes me completely. While I am in such meetings I have to make sure that I don't get distracted too much from what is being discussed and avoid making weird faces at people and giggling at inappropriate moments. That's doable but it requires effort. It's also very hard knowing when it's my turn to speak. People often think I'm rude because I interrupt them. It would be great if everybody finished their utterance by saying "That's it" or "I'm done." I often do that myself in case anybody else in the group has a similar difficulty.

All of my meetings today went very well. If you were to ask anybody who met me today whether they thought I had autism, I'm sure nobody would have the slightest idea. Of course, all these things made me so tired that when I went home I fell asleep immediately. Still, it's a small price to pay for the great benefits that autism brings to my life.

Many people who know me closely are incredulous when I tell them I have Asperger's. As you can see from the description of my day, I made a choice to make my autism as unnoticeable to others as I possibly can. If, however, you don't feel like doing all these things to prevent others from noticing, then you definitely shouldn't. There is no "correct" or "incorrect" way of being autistic. My way works for me but if you choose to relate to it differently, that's great too.

Questions and non-hateful comments are welcome.

17 comments:

Justin said...

I have similar strategies to managing. When I worked in student affairs it was very difficult because it's a very happy-go-lucky field full of people who are very expressive.

Things that I do every day are easy to manage, provided I do them the same way. I take the same route to work; I have the same routine when I arrive. However, I have a very difficult time doing something spontaneously. I experience quite a lot of anxiety if I get a phone call from a strange person or if someone wants me to go do something that isn't part of my routine and hasn't been planned.

Having nonverbal learning disorder as well can make things a bit more difficult; I don't always put things in exactly the same place, so I have to take extra time to make sure that everything I'm going to need the next day is ready.

Literalism can be a bit of a problem. I disclosed my autism and nvld to my last supervisor and explained to her that if she told me to do something a certain way, it would be done that way.

So when she told me to write one particular sentence in a field on a form, I wrote that sentence verbatim. The only problem was she apparently didn't actually want me to write exactly that sentence on the form despite beginning the conversation with "This is how you should fill this out..."

When I had conduct meetings/hearings with students, I had to rehearse the meeting beforehand to prepare myself; I could handle the unexpected response but it always took a minute.

The other thing I have to remember is not to be blunt. If someone asked me if I thought their presentation was effective I might say, "No, I thought you focused too much on making it 'fun' and not enough on conveying information."

I'm also bad with names, but I will remember other details.

It's exhausting trying to do all the things that neurotypical people do. I found I had a much easier time coping on the academic side than on the student affairs side. None of my professors or research supervisors were terribly concerned if I forgot someone's name or if I took something literally because of the way they phrased it.

I've largely come to the conclusion that autism and student affairs don't really mix.

Clarissa said...

Thank you for sharing, Justin!! It's such a relief to know that there are people like me out there.

I know what you mean about being literal! Today, I was filling out some paperwork and I had to redo it twice because I kept doing exactly what my boss was saying I should do. She is a very patient person, so I'm lucky.


I know I wouldn't be able to work in student affairs. That's too much human contact for me.

Justin said...

My former roommate is an autistic academic as well. There are a few of us out there.

Literalism and situational novelty (something unique to nld/nvld) are probably the biggest issues I face. Change enough details and even though I've done something a dozen times before, it will feel like a new situation.

As for student affairs, the recession devouring my job actually turned out to be a positive thing. I can't believe I managed to do it for five years, to be perfectly honest.

eric said...

My Asperger's manifests itself in some ways similar, and in some ways different from yourself, and this is why I think it is wrong for the general public to stereotype ASD people.

Like you, I am bad dealing with the public, unless it occurs under very controlled circumstances, and that is why I have been more successful at some jobs and failed miserably at others. Mixers, meet & greets, and wine & cheese parties terrify me, and I wind up just eating all the food and drinking all the beer/wine.

As far as directions go, I am exceptional--I can bring up an entire map in my head, in 3-D and color (like my own GoogleMaps!), which is probably due to my deep interest in geography. As a kid I would spend hours studying maps and climate/population statistics about places around the globe. My wife thinks I'm full of it, and just being a typical guy not willing to ask for directions. I can even picture the layout of places I've lived as a kid, going back to when I was a toddler.

I can remember faces, but never names, unless I have a clear visual image of that person's face in my head. Oddly, but not surprising, I can't remember what somebody told me this morning, unless I took (copious) notes, or unless I visually and aurally evoke the exact circumstance under which said conversation/meeting took place. Like you, I forget or misplace things, unless I have some routine or mnemonic ritual.

The most visible manifestation, of course, is complete absorption in any activity. If broken away from it, I experience extreme anxiety--a behavior that is perplexing to most neurotypicals.

Clarissa said...

"My wife thinks I'm full of it, and just being a typical guy not willing to ask for directions."

-Whenever I can't find a doctor or a store I need in this new area where I live, my husbands starts asking "Why don't you ask people at work? Why don't you ask somebody?" I still haven't been able to explain that it's easier for me to learn to fly than address even people I really like with such questions. I just can't do it for some reason.

"Mixers, meet & greets, and wine & cheese parties terrify me, and I wind up just eating all the food and drinking all the beer/wine."

-Oh, I know! Those gatherings where you have to engage in social niceties and silly chit-chats are a torture. I have now lost all regard for social conventions and every time I have to attend, I just call my sister and we talk all the time the gathering lasts. Then I tell people there's been some terrible family crisis and I simply had to talk. Since we speak in Russian, nobody has any idea what we say. :-)

And I also feel strong physical discomfort when somebody interrupts my absorption.

Queenjulie said...

There was a young man with fairly severe Asperger's in the department where I used to work, and I ended up supervising him on a regular basis. I know that literalism and not knowing people's names are considered negatives for people with Asperger's, but I can't tell you how much I loved those traits in him! He was a dedicated worker who would do exactly what I asked him, in the exactly correct manner, which was a wonderful change from the usual high school interns who wandered around the office. And although I am neurotypical, I am terrible with names, so knowing that he would never remember my name made me feel so much less guilty about forgetting his! :)

Leo said...

Ah, the routines! Phone-keys-sunglasses-wallet, take your time and make sure you have everything, you might want to go through that list again...

I take a long shower every morning just to practice some lines, saying them out loud to know how to phrase them.
I HAVE to do this otherwise there will be uncomfortable silences when I arrive at work, or worse, I might say whatever floats through my head and people will look at me like I've just run over their dog.

As for meetings and telephone calls; I didn't realise this untill I was in my late twenties but there are a few people in my family who are very charismatic and I might have unconsciously studied their behaviour and copied some of it, to the point where I am now able to function in most of these situations by acting like my uncle, it is funny. It is also very tiresome and won't work in all situations.
Parties I avoid like vegetables!

Directions are not really a problem for me, but at 31 I still don't know left from right. I do know that I'm right-handed so I'll figure it out by going through a little routine where I pretend to write, the hand that holds the fictitious pencil is right, the other is left.
I don't know if that's aspie but it makes me feel like a retard!

But then again I am able to learn, all by myself, ten thousand times faster than anyone I know who's "normal". Just for fun.

Great blog, thanks!

Clarissa said...

Oh yes, left and right! I completely forgot about that. I have 5 degrees from leading universities and I don't know left and right. Like you, I have a little routine that allows me to deduce left and right. I keep asking people to stop torturing me with this "Look to your left" stuff and just point their finger.

So you are definitely not a retard and neither am I. We just need a lot of space in our brains to hold the really important information, so the silly things like left and right get overlooked.

Alanna said...

I just want to say that I discovered your blog a week or two ago and it has been so enlightening and informative. What struck me most about reading this post is how much I can relate to the strategies you use. I don't have Asperger's but I can get very nervous in spontaneous social situations and I'm extremely forgetful and disorganized - except I am neurotypical and don't have to worry the same about being judged or labeled. Everyone has their own ways of coping with the world and once we begin to understand each other better we find that we're not so different after all. Keep writing!

Lindsay said...

Hi, Clarissa.

I also use a lot of similar coping strategies to yours --- the one about constantly thinking about everything you have to do to get somewhere really rang true for me.

(Unlike you I do not, and generally can't, think in words --- words are hard and take a lot of specially focused thought to come up with, so it's more efficient for me to use other means --- so for me the route litany takes a visual form, an endless slow-motion looping video of myself walking the route, and seeing the scenery as I go. I have no innate sense of direction, like Justin, but I have got a near-photographic memory, so the first time I go someplace I draw myself a detailed map, which I follow religiously, like it is the only thing which will save me from being lost --- which it is! --- and then I just remember everything I saw along the way, which gives me a frame of reference for if I ever have to go there again).

I also don't normally think of things to say to people ahead of time --- too much work for someone who does not normally keep words in her head. Instead, I just greet people, and if they say something to me that I cannot answer, I just won't say anything or will say "I don't know." ("Hi, Person X!" "Oh, hi Lindsay! How're you doing?" "...... I don't know.")

I also tend to take stuff very literally, too. And I know that for me it is NOT because I don't understand sarcasm or irony --- I am actually very deadpan myself, and use irony much of the time; I just can't recognize it when another person is being ironic. But I love that kind of humor ... it just takes me awhile to catch onto it, is all.

Monica said...

Clarissa, thank you so much for taking the time to educate us neurotypicals about what it can be like to have Asperger's. I found this post very informative.

wolvster said...

Hi,

I'm not very good at commenting and I usually just lurk, but I just wanted to say that I can very much relate to most of what you wrote in this post.
Thanks for sharing.

Icca said...

I really relate to a lot of this, thank you for posting!

I'm bad with faces and better with names, but I pretend I'm just bad with names because a lot of people are, or claim that they are. I've learned to just say "I'm sorry, I'm really bad with names. What is your name again? I'm Jessica, by the way, if you forgot."

People don't seem to find this rude. I suspect a lot of people find this helpful or relieving, too. If I can muster it up (I can't always) that's something that has worked for me. I'm not saying you should do this or even try it, mind. What works for you is best.

Again, thanks for posting this.

Jemima Aslana said...

Ohhhh, halfways through your post I had to leave and come back later to read the rest. I had one of those really scary moments going: "OMG.... who is this, is it me? Did I write this and forget it? No... wait... OMG!"

It was the phone call issue that triggered this response - despite the fact that the routine checks you described are not at all similar to anything I do.

Wow. I ought to have a pap smear, and I have ought to have one for 6 years. I have not yet been able to make that appointment, because on top of my problems with making these appointments there's a previous trauma that pretty much blocks my every action the moment I start seriously considering preparing myself for making that call. It's terrifying.

And the need to rehearse conversations beforehand. That is so me. And so far none of those who are supposed to help me with it have been able to understand this fact. Namely that I need help to figure out what to say to people. What info is prudent to give them and will satisfy their curiosity, and what info is none of their business, and what info will bore them to tears. I suck at this, and my therapist (who has no experience with autism, but she was all they would give me - yes our system sucks) just doesn't understand, and is completely unable to come up wit concrete examples of what one might say in this and that situation and when people ask so and so.

If I could live my entire life and only ever communicate in writing I wouldn't even have a problem. My new GP's clinic has set up a system so you can arrange appointments and prescriptions online, though, so MAJOR YAY! That may actually mean that I get to have that years-overdue pap smear in not too long. Now to gather some courage...

I'm totally like eric with regards to finding my way. I have 3D maps in my head as well. The peculiar thing to me, though, is that it only includes the road iself, not those things that are beside it. So I can look at a map, and I'll get the distances between each turn completely right, but if someone explains that I should turn right by the great oak... I'm lost, 'cause I won't see the oak, and I shouldn't try to explain routes to others either, because I'll go by how far along a road they should go, and which number road to the left should they take, and I'll leave out the landmarks that NT's would go by like "turn right after the shopping mall and then left by the lake.

I suck at names - though I have gotten better. My tool for remembering people's names is to attach to the name a detail about the person, which I can remember. Like their hobby, or their job, or a funny story they once told me etc etc, and I'm completely face blind. After an hour's conversation I still wouldn't be able to tell you the colour of my interlocutor's hair. I just need a detail about that person, then I can remember their name - but I still might not recognise them on the street unless it's someone I know REALlY well. Heh, a lady of a shop I frequent - like really often - I didn't recognise at all, because we were not in her shop, we were in the shopping mall, and she recognised me an said hi, and I was completely stunned and had no idea who she was. So I just said my routine polite "hi" and smiled, and hours later did I figure out who she was. She was out of the element she belonged in (in my head) and so I just couldn't connect the dots. People must really think me rude at times, when I don't recognise them :-(

Anyway, just wanted to let you know that it is a great comfort to me to know that there are others like me out there. So please keep writing.

Clarissa said...

Thank you for your great comment, Jemima. I'm sorry you had trouble posting it. Blogger has been acting up recently and I've had trouble posting on my own blog as well. I hope they take care of whatever problem is causing this.

It's really great to see how many people share these experience. I'm very thankful to everybody who posts comments here.

meg said...

Couldn't find any commentary about the "red shirt guy" youtube phenomenon (almost 4 million hits with over thousands of comments)from over a month ago: http://www.youtube.com/watch?v=DwyMB19q7ms
There's also an auto-tune remix version, and the guy's own reply (a million hits) where he says he says he has Asperger's. He's such an earnest guy and the World of Warcraft developers seem so slimey and cruel, it's a fascinating piece of video. Curious as to your thoughts, Clarissa.

Being Lumina said...

Thank you soooo much for writing this! I have often wondered, after my son was diagnosed with Asperger's, if I have Asperger's as well. You and I have so much in common (as do my son and I), and I employ many of the coping strategies you suggest, as well as suffer some of the setbacks and thought processes.

My husband read your blog and laughed at all the similarities.

I have my own blog and have started a page devoted to my interactions with my son. My page is aimed at the positive and comical aspects of living with someone with Asperger's. If anyone is curious, here it is:
http://beinglumina.blogspot.com/p/gospel-according-to-gabe.html

Once again, thank you for this blog. It really connects people and makes us feel NOT SO ALONE.