As much as I love my loft and my house, I am feeling increasingly frustrated with not being able to spend much time out in the world. I like being out and about, and I also like being able to go places with Bob. Often, I want nothing more than to be at home for days at a time, living in blissful solitude, but sometimes, I wouldn’t mind an hour or two in the beautiful, interesting, friendly town in which I live.
As always, my primary barrier to going out into the world is sound. Auditory overload can happen immediately if the environment is too noisy. It’s easy enough to stay away from places that I know will be too much for me (like the bead store with the Very Loud Music), but it’s harder when I know that the environment might go from quiet to noisy while I’m there. I’d love to go out to eat at a restaurant, but even if it’s quiet when I get there, I can’t count on it staying that way. Any loud noise feels like an assault on my nervous system—an assault I can’t see coming—and when it happens, the result is intense and immediate.
Needless to say, this problem has been causing me some anxiety about going out, and it’s been difficult for me to strategize my way around it. However, Bob and I have come up with an idea. We’re putting together a list of a) places that we can definitely go, b) places that we will need to check out to see whether they will work for us, and c) places we absolutely cannot go under any circumstances. For the purposes of posting the list on my blog, I’m leaving out the names of local businesses because I don’t want to pan them; lots of people like going to them, and the local economy needs all the help it can get right now. So, here is the list:
Places We Can Definitely Go
The library
Small, local bookstores
Quiet neighborhood streets (for walking)
A small, discount grocery store in town
A drive-in movie
Places to Try
The local movie theatre
The art supplies store
The stationary store
The local Thai and Indian restaurants
The co-op (in the early morning hours)
The shop that sells Indian textiles
Places That are Definitely Off Limits
The bead store
Restaurants with TVs and/or bars
Shops, cafes, or restaurants with loud music or crowded eating areas
The local pharmacy (a very busy, crowded, noisy place)
My biggest challenge at the moment is figuring out how to try places that might work without getting overloaded. It may not be possible to avoid overload when we’re working on our Places to Try list, so we will have to schedule these attempts when I have a couple of days to recover. We also have to make a commitment to leaving immediately if the situation becomes aversive. I find it very hard to leave when I’m in a situation that seems to be working and then suddenly stops working: the music gets too loud, children get tired and start crying, a noisy party of eight walks in halfway through my dinner, and so on. I get stubborn and refuse to believe that the situation is not going to be salvageable. Beneath the stubbornness are sadness and disappointment: I was having a good time and now, through no fault of my own, I have to leave. But I can’t let the sadness and disappointment be obstacles anymore or I’ll be like a scared rabbit, unable to move.
As for going to the movie theatre, there are two issues: one is the sheer volume of the music and dialogue, and the other is the issue of people talking during the movie. I cannot stand it when people talk during a movie. So, I’m figuring that if Bob and I sit in the very back row of the theatre (where people don’t usually sit), I won’t able to hear people talking because they will be in front of me. It’s worth a try to see what happens.
I’ve also figured out more strategies about reducing sound when I’m out. In addition to my Sonic Defender ear plugs, I’ve gotten a noise-reduction headset at the local hardware store. It’s not electronic; it’s something that people wear when running power tools or mowing the lawn. With the earplugs, it works pretty well. I look weird wearing it out in the world, but given that when I’m walking, I really want to be left alone, the headset is an especially good idea. It also might work for going to the movies.
Along with wanting to go places, I’ve also found myself wanting to be around people. Of course, determining who to hang out with is even harder than determining where I can go. People who do not know that I’m autistic can easily overload me. A couple of weeks ago, I decided to start the process of figuring out how to be around people by finding an autism-literate therapist in town. Lo and behold, I’ve already succeeded! His office is just a ten-minute walk from my house, and my insurance will pay for the sessions. Halleluyah.
Bob and I went to see the therapist on Friday, and I felt very comfortable with him. The session was great. He asked whether eye contact was difficult for me. When I said yes, he said something like, “I want to thank you for making eye contact with me, knowing how hard it is for you. You don’t have to make eye contact if you’d rather not.” That was a good sign. When I told him how tired I was getting by talking back and forth, he said, “If you decide to come in to see me again, feel free to write down beforehand what’s going on for you and bring it to the session. Then, I’ll read it, and we won’t have to talk much if you don’t want to.” That was another good sign.
Finally, he asked about my friends. I told him that I have friends, though not in town, and that I get so easily overloaded that I resist getting together with them, even though I know they love and support me. He suggested that I talk to my friends and tell them what I need so that I can make space in the friendship to be myself and to take care of my sensory needs. What a concept! I hardly know how to begin that conversation, so I’m hoping that he can give me some guidance and support on the whole subject.
Speaking of friends, I’m meeting my new potential local Aspie friend tomorrow, and I’m alternately very excited and very nervous. She’s going to come over to my house for an hour. I very deliberately avoided doing what I really wanted to do, which was to say, “Come over for the entire afternoon!” I need to learn pacing and to set time limits with my neurology in mind. What my head and my heart want to do is one thing; what my nervous system can do is another.
Anyway, she’ll come over tomorrow, I’ll give her a tour of the house (all first-time guests get a free tour of the house), and then we’ll play cards. We’ve been corresponding by email for a couple of weeks, so we know what our sensitivities are, and what works and what doesn’t work for each of us. On that basis alone, I’m feeling very hopeful about the visit. After all, how many opportunities do I get to say, “I can’t listen to music and talk at the same time” without feeling like I’m either freaky or a bore? I can say it to my daughter and to my husband, and now I’ve been able to say it to another Aspie in town. It’s a good start.
While I’ve been getting ready for the visit, I’ve been thinking more on the subject of friendship, wondering why I haven’t made new friends for several years. I’ve been feeling pretty psyched out by that fact, and not surprisingly, my self-confidence as far as friends go has been in negative numbers for awhile. But I think I’m beginning to get it figured out. Part of the problem is that I can’t do the things that friends usually do together: talk for a couple of hours, go to concerts, parties, restaurants, dances, cafes, etc. Between not being able to a) talk for a couple of hours without getting worn out and b) go to many places without getting overloaded, I just haven’t been able to figure out what I would actually do with a friend were I to make one.
It’s getting a little clearer now. I can get together with a friend and play a game: a card game, Scrabble, anything will do. I can go to a bookstore with a friend and hang out without the pressure of having to interact. I can also just invite a friend to my house and do some kind of “parallel play.” Just having someone here who might like to read while I’m writing could be very nice. Of course, I will need to find other like-minded people for these kinds of activities, but at least I’m starting to define what I can actually do, rather than what I can’t do.
As far as tomorrow goes, send out good thoughts. I’m really proud of myself for not having bailed out on the whole thing, which is my usual response to anxiety. Right now, I don’t care whether I’m feeling happy or sad, tired or rested, confident or insecure. I’m going to meet this woman, be myself, and welcome her into my home!
© 2009 by Rachel Cohen-Rottenberg
Good luck with your endeavors. BTW, if you can modify and bear the movie experience, a film is coming out about a man with Aspergers, called “Adam.” I wonder if they’ll get it right, or will it just be stereotypical?
Best of luck on the visit. My sweetie has electronic earphones for shooting that only block out noise above a certain level and he loves them! Might work for those annoying sounds at the movies if the regular ones mute normal things too much.
I hope they get Adam right. I am planning on seeing it with a friend of mine who has AS. Hopefully he will be able to tell me if they get it right or not. I’m very excited about seeing it with him.
Hope it goes well. I’m curious where you met a local Aspie. But am glad you did. By the way I had to leave Bend. And now I’m at a hippie commune in Eugene but might be only temporary. Life is interesting huh?
John DL – i have ‘Adam’ posted on my computer’s calendar, looking forward to it
April – do you have the name of those earphones?
Rachel – as usual, we have so much in common. it used to be that i could feel comfortable heading for a quiet afternoon at the library, but the last couple of neaighbourhood locations have been noisy, noisy. between kids who aren’t being taught about ‘indoor voice’, chatty people ON THEIR CEL PHONES!!, and library workers goofing around, it’s now just the place i go to pick up my holds, and to take a look through the new magazines, but i’m no longer lingering. and oh, would i be happy if there was any place in ontario that still had a drive-in theatre
good luck!
Hi Rachel,
Although my experiences are more moderate than yours, my immediate world had a way of overwhelming me …without understanding why. As a result I grew up feeling like an alien. It has only been recently that I´ve begun to make any sense of it. So, the more I tried to express this hyper-sensitivity the more people turned away. They weren´t being mean. They just didn´t know how to relate to my existential problems. Talk about frustrating.
Bye for now…
Hi Rachel
Sounds like you are really working things out. Identifying the issues and zeroing in on possible solutions. I hope the things you are planning to try work out for you. I realized too that I have a hard time listening to music or even talk radio and doing something else. I want to either focus on what I am listening to, or do the thing I am supposed to be doing without the aural dstraction. And when I was in high school I used to study with the radio tuned to the latest sounds…!
Hope things go well with your new Aspie friend too. I will be interested to hear how it goes. I haven;t told any of my friends about my sort-of-self-diagnosis. I got near to telling one friend, but wimped out. I asked her what she knows about AS and she seemed only familiar with the way it stereotypically shows itself in young males. Then she met a female aspie and learned a bit more, and put me in touch with her via e-mail, but I haven’t had the courage to bring it up with her… I occasionally run into people who I think may have AS, like the young lad I met recently who started spouting facts and figures about the British Royal Family, then apologized and said “I love royal history, I know I’m boring”, bless him! I happen to like the Queen so I told him I didn’t mind
Ben, I happen to know that there is still a drive-in theatre in Ontario, it’s on (I think) 9th line in Oakville. Went past it once and was astounded to see it. Just googled and found this: http://www.5drivein.com/
Good luck with your visitor. It’s good that you’ve got someone outside of family you can talk to (in person).
Dunno if it will help you but having darker glasses and earphones in helps me get around in public at times.
Do you, or any of your gentle readers, not have the “in a fishbowl” feeling when out in public? I have always felt like lots of people where staring at me. If not directly, then behind the curtains in their homes, out of the corner of their eyes or staring after I pass by.
I guess I’m fortunate in that sound is not one of the things that really sets me off. (Some sounds, some times, but not sound in general.) IOW, I couldn’t go out with big headphones on because it “would” make people really stare at me. I do find my MP3 player does discourage people from trying to talk to me, and that’s a blessing.
Was musing on the notion of “the boy in the bubble”, cut off from one’s surroundings-yet I feel like I’m in the opposite position (in some ways, at least).
On a sensory level, it seems that other people are each in their own “bubbles” of protection/armor against the stimuli around them. I feel isolated, in that things that bother me aren’t considered significant or irritating to others: I have “bubble envy”.
Wish I weren’t as subject to the disturbances & distresses visited upon me by “mundane daily life”, as well as the overwhelming swirl of phenomena (sensory as well as social) when I’m out in public. I feel overly visible, “on display”, in a negative way, when I leave my home (yes, I admit I’m agoraphobic). Yet I also (paradoxical, but true) feel invisible, detached, disconnected from people in general, because they can’t perceive the “positive, valuable” internal/complex me, only a “negative” exterior/surface presentation. I feel both too vulnerable, subject to my environment, conspicuous-and also unable to breach the divide between my individual self & the rest of humanity, cut off from the strangers around me (“out of the loop”).
“Doing” activities is also an issue, because the things I enjoy are hard to quantify as “active”. I thrive on & am enthusiastic about what get called “passive” (physically inactive, based more on mental content) pursuits, such as reading, listening to music, writing in my offline journal, drawing, and sharing conversation with the few select individuals with whom I feel a kinship. People suggest I join a group in town, but I don’t have interest in those hobbies, nor do my tastes/preferences seem to overlap with those of many other people, at least not offline/locally.
Folks often describe themselves (for instance, at an online dating site I joined, to no avail) as “outdoorsy”, so I refer to myself as being “indoorsy”. Alas, somehow this fails to draw like-minded people to me (for affiliation, solidarity, companionship-all those things people derive from spending time & sharing experiences with those who affirm & appreciate each other).
Society/culture seem to venerate those who “do” (meaning visible, tangible, athletic behavior) far more than those who “be” (and I “be” more than I “do”). My virtues only appear in particular contexts, in relationship with someone.
Good thoughts for Rachel! Good thoughts for Rachel!
I love sending good thoughts for people. Are you feeling it?
Definitely. Thanks, Megan!
gleep! thanks Misfit! i took a local on his work when he mentioned there were no drive-in theatres left around here.
@ Ben – you’re welcome. Enjoy! Sometimes it takes an outsider or misfit to see things…
People who talk during movies should be permanently banned. I would go to our local drive-in, but we have no car.
Lizziek8, my wife has that same feeling a lot, certain that everybody is watching her, waiting to see something to criticize, so it’s definitely not just you.
We are still trying to work out what places are ok for us to go to. The library is usually fine, but it is sometimes too easy to get overwhelmed by the sheer amount of choices there, wanting to check out all the books at once. Restaurants are further complicated by the fact that I am diabetic vegetarian, she is vegan, and we both have a handful of bizarre food allergies.
Parks are always nice when school is in session. Screaming kids are kept to a minimum that way.
AMC movies has sensory friendly film days/times. Lights are left on and sound is lower. Also try movies with captions. That way you can read the dialog.