Journeys with Autism

Archive for Sensory Processing Issues

Autism and Me: Difficulties with the Spoken Word

September 6, 2009 Rachel ASL, Communication, Hearing, Sensory Processing Issues, Speech, Word Pictures

I’ve mentioned in other posts that I see words spelled out in my mind when I’m thinking, talking, or listening. The Asperger’s specialist who diagnosed me said that seeing these word pictures must be very distracting to me. I had never considered the question before. I now believe that this way of thinking is part of the reason that I have a hard time keeping track of a lecture or conversation. I’m seeing the visuals while trying to listen.

College Lectures
In college, I learned that if I weren’t taking notes, I wouldn’t be able to concentrate on an hour-long lecture. Without a pencil and a piece of paper, I’d follow the lecture to a certain point, and then suddenly, it would seem as though the lecturer had taken a huge logical leap. For the life of me, I could not figure out how he or she had gotten there. I’d go back in my mind, trying to parse the beginning of the lecture, and before I knew it, we were in the middle. By the time the lecture was over, I had long since given up.

My sense is that I became so interested in the literal appearance of the words in my mind that I lost track of what the lecturer was about to say next. After a great deal of frustration, I learned that the best way around the difficulty was to take furious, copious notes. It was the only way I could remain present to what was being said. Later on, I could read my notes and put the logic together myself.

Conversations with Others
Every Friday morning, I used to volunteer at our local public library. Everyone was very friendly, the place was very quiet, and my job involved packing up books for interlibrary loans. One morning last winter, when I was still grappling with the issue of whether I was autistic, I had an opportunity to observe what happens to me when I don’t have recourse to the written word.

The first ten minutes after my arrival at the library were fine. I made eye contact, I smiled, and I was able to stay in the flow of the conversation. One woman complimented me on my scarf and asked whether I had knitted it myself. When I answered in the affirmative, another person said that I should talk with the lady on the second floor who was organizing a knitting circle. One of my co-workers took me up to meet her, where I gave her my contact information.

As I came down the stairs, I congratulated myself on my social skills, and I wondered why in the world I thought I was autistic. I took up my post, packaged the books, and talked to people on the staff when I needed help.

By the time I left two hours later, I was completely disoriented and overwhelmed. I felt out of sync in every conversation. It was as though each interaction were a dance to which I had never learned the steps. With every word coming out of my mouth, I knew that I was going on far too long and talking about all the wrong things, but my panic over feeling overwhelmed only made me talk more.

To make matters worse, I couldn’t remember anything that anyone had told me. Was the spinning class up the road or was that the knitting class? And there was something about a drop spindle in there, wasn’t there? I felt as though I were behind a glass, listening to people speak, but unable to remember the content of their words or come up with an appropriate response.

At that point, I was finally convinced that I have a problem processing spoken language. I couldn’t keep up with all the words coming into my brain, and I couldn’t figure out how to slow down the words coming out my mouth. Besides, if I just kept talking, surely someday, someone would understand what I was trying to say.

Learning New Languages
I love foreign languages and have studied French, Spanish, Latin, and Hebrew. I can read and write a foreign language fairly easily, but when it comes to speaking, I have difficulty arriving at fluency. I have a very hard time understanding a foreign language when it’s spoken, and I find it difficult to answer spoken questions in any kind of reasonable time frame. Until I was diagnosed with autism, I could never understand why. Now that I realize that I can’t converse very fluently in English, my difficulties with foreign languages are no longer a surprise to me.

As I get ready for my ASL class, I’m heartened by the knowledge that ASL is a visual language. Lou Fant, one of the founders of the National Theater for the Deaf, wrote the following about ASL: “The uniqueness of ASL lies in the simple fact that it is based upon light waves rather than sound waves.” I’m an intensely visual person. I can focus, attend to, and organize what my eyes can see far better than I can focus, attend to, and organize what my ears can hear. ASL may very well be the language in which I finally arrive at fluency.

11 comments

Creating a Sustainable Life

August 26, 2009 Rachel Communication, Disabilities, Making Lists, Marriage, Sensory Processing Issues, Stimming

You might remember that, a few weeks back, I wrote a post called Creating a Support Network. I had written down all the tasks that I needed help doing, and Bob and I were going to cobble together a list of people who could help me do them. Over the course of the month, however, we’ve realized that while we can enlist the help of others for regular, practical tasks (such as housecleaning and carpooling), we’re going to have difficulty finding help for other, less predictable tasks:

If a task involves advocacy, finding someone is next to impossible; we live in a rural area, and the chances of finding someone sufficiently knowledgeable about adult autism are slim.
If a task needs doing only once in a while, it will be very hard to find someone to be “on call” to do it.

So, we’ve shifted gears. We have someone cleaning our house once a week, and Bob is going to take care of making sure that the carpooling goes smoothly until Ashlynne gets her license. As for the rest of the tasks, I am experimenting with ways to do them comfortably, and if I can’t find a way, the task will have to go away.

Our Strategy List
Here’s how our strategy list looked as of Sunday night:

Resolved issues

1. Housecleaning.
2. Understanding home and non-profit financials.
3. Food shopping: Rachel shops at the co-op once a week for herself and Ashlynne.
4. Banking: Rachel has begun the process of transferring funds to our local bank.

Tasks for Rachel to try on her own (limiting each attempt to one per day)

1. Going to the therapist’s office.
2. Going to the stationary store, art supplies store, and other relatively quiet places to do errands.
3. Making deposits at the bank.
4. Bringing envelopes or parcels to the post office.
5. Picking up prescriptions and other items at the pharmacy.
6. Moving more funds to our local bank.
7. Finding out what tasks she can do online.

Issues that Bob will work to resolve

1.   Getting Ashlynne where she needs to go until she gets her license.
2.   Finding people in his network of friends to pick up prescriptions, drive, or do other “spur-of-the-moment” tasks when he is ill.
3.   Making an appointment with an attorney to create Advance Directives for Healthcare for both of us.

Issues on which we will improvise

1. Cooking meals. Bob does not mind cooking meals when he is well. For times that he is ill or out of town, we will begin to create an emergency cupboard of canned soup, macaroni and cheese, herbal tea, over-the-counter medication, and other items that will allow Rachel to make simple meals and have symptom-relief medicines available.

2. Accompanying Rachel to doctor or hospital appointments and advocating for her. No one other than Bob knows Rachel’s autism well enough to be a proper advocate. When Bob can be there, he will. When he can’t, Rachel will write a letter to the doctor or hospital ahead of time, stating her needs as an autistic patient (a quiet room in which to wait, sensitivity regarding sensory issues, and so on).

3. Making telephone calls. Bob will make these when he can. When he is not available, Rachel will make them only if necessary, and only so long as she gives herself sufficient time to prepare and to recover.

Adaptive Measures
I now have three—yes, three!—Peltor noise-reduction headsets:

My original Peltor Optime 101 headset, with a Noise Reduction Rating of 27. I use this one at home when loud noises are coming in from the outside world.
My new Peltor Optime PTL (Push to Listen) headset, with a Noise Reduction Rating of 25. I use this one for working at the thrift store.
My even newer Peltor Ultimate 10 headset, in blue, with a Noise Reduction Rating of 30 (the highest for a Peltor headset, as far as I know). I use this one for walks and errands in the outside world.

I also have a number of “I can’t hear you” cards in my purse, explaining why I’m wearing a big headset, why I’m in the store (or bank or post office), and how I intend to pay for everything. If I’m going to become more self-sufficient, I’m going to have to continue my strategy of encountering the outside world as though I am deaf and mute.

I gotta tell ya, I’m lovin’ every minute of it. Well, almost.

People Have to Listen to Loud Music in a Pharmacy WHY?
Yesterday, I decided to try going to the local pharmacy and buying some supplies for our “emergency cupboard.” I knew that I might encounter an itty-bitty problem with LOUD MUSIC THERE, SO I WORE MY PELTOR ULTIMATE 10 HEADSET.

This pharmacy is unlike any that I have ever encountered. The number of employees and pharmacists present at any given time is almost always higher than the number of actual customers in the store. Most of the employees are behind a series of counters at the back, and they spend a great deal of their time on the telephone, taking orders for prescriptions. They all sit, stand, and move around in very close proximity to one another, all talking at the same time, all talking rather loudly, and all listening to very loud rock ‘n roll. The truly amazing thing about the people, though, is that when you come up to the counter, they are very focused, very friendly, and very helpful. Whenever I’ve gone there to fill a prescription, I’ve been so entranced by the mystery of how these people can actually work under these conditions and enjoy themselves that I forget what’s happening to my senses until I get home and stagger in the door.

So, when I set out yesterday afternoon, I knew my adventure might not last long, and as you might have surmised, it didn’t. The walk was wonderful. I could hear very little of what was going on around me. Then, I walked into the pharmacy. I was there for about five minutes, and I had put about five items into my basket, when I couldn’t stand hearing the music anymore. I felt as though someone were screaming right into my ear. Even with my headset, I felt like I was being assaulted by sound. I simply couldn’t concentrate. I finally just put my basket down and went home.

Once I had recovered from the fiasco at the pharmacy, I decided to order all the items online. I found a site that offers free delivery if your order is over a certain amount, and I got everything on my list. Then, I called my insurance company (yes, myself!) and arranged to have my regular prescriptions mailed to my house. If I need some other prescription once in a while, my husband, or my daughter, or a neighbor, or some other nice person will go and get it for me.

One task resolved. Onto the next one!

6 comments

Speaking, Listening, and Social Expectations

August 22, 2009 Rachel ASL, Communication, Disabilities, Hearing, Sensory Processing Issues, Speech, Volunteer Work

I’ve signed up to take an introductory course in American Sign Language. The class begins in early September.

Initially, I had two reasons for signing up. First, because I hope to volunteer at a school for the deaf, I want to learn the local language. Second, when I’m out in public wearing my headset and people want to interact with me, I want to have some way to communicate that I can’t hear or speak. At the thrift store, I now wear a tag on my shirt that says, “I have a hearing disorder. Please ask a staff person for assistance.” It works just fine, but I can’t possibly make enough tags to cover every situation in which I might find myself. I have to be able to communicate in some recognizable way. Of course, if I sign, most people won’t know the particulars of what I’m saying, but they will recognize ASL when they see it and draw the appropriate conclusion. In addition, I’ll feel that I’m communicating, just as if I were speaking French or Hebrew. I won’t feel so anti-social, so cut off, so frustrated about how to let people know that there’s a human being in here.

When I got the registration materials in the mail, another reason for taking the class nearly jumped off the page at me: each two-and-a-half-hour session is carried out entirely in ASL. No voices. Just signing. Full, silent immersion, once a week. Can you imagine? A room full of quiet, hearing people? I know you can find them at silent meditation retreats, but I don’t meditate and besides, I want to communicate with other people. I just don’t want to have to speak all the time.

For much of my life, I was a stereotypical, talkative Aspie. I could talk anyone under the table. Anyone. Of course, I completely exhausted myself and everyone else, but the point is that, once upon a time, it was possible. My husband would probably tell you that it’s still possible, because as he said the other night, “There are always a lot of words flying around in this house.” And it’s true: I can talk his ear off. But these days, he’s really the only one with whom I ramble on, and to tell you the truth, I’m starting to wear myself out.

As I look back, I understand so much about my formerly talkative self. Although I didn’t know it at the time, talking a blue streak was my favorite way of fending off the prospect of auditory overload. If I could talk at someone, they never got a chance to overwhelm me. If the person were just as talkative as I was, it didn’t matter. It was like upping the ante at a poker game. I could get out in front and stay there. Of course, I was tiring myself out, but at least I was in control of the situation.

Well, sort of.

Another great thing about this strategy was that I didn’t have to face the fact that I couldn’t initiate a typical conversation. I didn’t have to confront my ignorance about where to jump in, when to step back, and how to stay in the flow. I didn’t have to face my awkwardness or my shyness. I didn’t have to register the fact that I couldn’t process another person’s speech as rapidly as I thought I could. I’d just go on a rant or a ramble with my favorite topic and talk myself into oblivion.

And now, it seems, I’ve used up the greater part of my lifetime quota of speech. It feels a little weird, but that’s life. Some days, I’m comfortable having conversations with other people, and some days, I’d just as soon not try to summon the energy.

So much for speaking. But then, there’s listening. There’s being out in the wide world, with all kinds of conversations going on around me, and not being able to attend to one at the exclusion of another. I hear everything, loud and clear. And of course, because I hear everything, I try to follow everything. My brain says, “Oh, these people are talking. I must process what they’re saying.” It’s completely involuntary. When people are talking about something interesting, sometimes it’s worth the effort (until I crash and burn at the 10-minute point). But when people are talking about nothing at all, when they’re engaging in social niceties, when they’re filling up space with chitchat, when they’re saying words whose purpose I cannot possibly comprehend, then all that brain processing is a complete waste of time.

I will concede that when people seem to be “talking about nothing,” they may actually be communicating meaning by the tone of their voices, their body language, and the associations that words carry between friends. But since I don’t see any of those nuances, I just process a whole lot of (apparently) meaningless words like, “Yeah, great to see you, too. Yeah, we just got back from the beach. Yeah, it sucks being back from vacation. Yeah, you look great. Yeah, good to see you, too.” And in the process, I get a little angry. Until recently, I never understood why. I thought perhaps I was a misanthrope, or angry at my parents, or a madwoman cleverly disguised as a sane human being. But now, I realize that when my brain works on chitchat, it’s working very, very hard on nothing. Working hard on nothing would make anyone a little annoyed.

Now that I’ve figured out that I don’t want to talk much in public and that I cannot leave my ears unprotected, exactly how do I navigate? Well, I know (at least theoretically) that I can put on my headset and go to the grocery store, the post office, my therapist’s office, the bank, and the pharmacy. I’ve got my “I can’t hear you” cards at the ready, and life is good. This strategy will likely work fine for errands, but for longer stays out there in the world, I’m having difficulty getting comfortable with the idea of not hearing or speaking.

For instance, last Thursday was the second day I’d worked at the thrift store with my headset on. The staff knows why I wear it, and that I have a new version with a “push to listen” button on one side. If any staff member needs to talk to me, I can push the button and listen without taking the entire headset off and hearing everything going on in the store. The staff seems fine with my adaptive measures, but I feel the pressure of social expectations weighing down on me like a force. There I am, in the linen department, focusing on my work, organizing everything to my heart’s content, and pretending that no one else is there. That feels weird. After all, I’d love to be able to act like my old, closeted self, smiling at people and offering my help, but I can’t. It’s just not possible to be in people mode and task mode at the same time.

I don’t think that anyone else is consciously beaming social expectations in my direction or trying to control me with their sense of how I must be. I feel the social expectations coming from inside myself. I’ve internalized so many of them—that I must smile, that I must make eye contact, that I must show interest, that I must be pleasant, that I must play my part to give people a good experience of me, and on and on and on.

But I can’t do it anymore. I have to protect my ears. I have to conserve my speech. I have to be careful of how much energy I use for any given task.

I’m hoping that ASL will help me develop safe boundaries for sound and speech while I create bridges to other people. As much as I enjoy the experience of silence, I need to communicate that there is a human being in here, and that I’m not simply an anti-social creature with a funny headset.

9 comments

Deafness and My Experience of Autism

August 12, 2009 Rachel Belonging, Communication, Community, Disabilities, Hearing, Marriage, Sensory Processing Issues, Speech, Word Pictures

First things first: I am neither deaf nor hard-of-hearing, although hearing is very hard for me. Sometimes, I wish I were deaf, but my condition often seems to be the very opposite of deafness. As I’ve said before, I hear everything at the same volume and cannot filter or prioritize sound at all. For awhile, just to get away from unforeseen auditory assaults on my system, I spent most of my time indoors.

Now, however, I am in the phase of Desperate Times Call for Adaptive (and Creative) Measures. So far, this week has been an interesting series of adventures in the land of autism, auditory processing, and the world of other people.

Sunday
My husband and I sat down with our Support Strategy List that I mentioned in my post on creating a support network. The purpose of the list is to develop a network of people I can call on to do essential tasks if Bob is ill or if he passes from this life before me. Without such a network, I’m a mass of anxiety and insecurity whenever Bob travels away from home for very long.

In the course of our discussion, we modified the list. It now has the following form:

Resolved issues:
Housecleaning (We’ve hired someone to clean the house once a week.)
Understanding home and non-profit financials. (Rachel is up to speed on this subject.)
New activity to try:
Rachel will try shopping at the co-op for herself and Ashlynne.
Remaining issues:
1. Driving Ashlynne where she needs to go until her 17th birthday (when she can drive herself). Bob will talk to the parents of one of Ashlynne’s friends to set up logistics.
2. Cooking meals.
3. Picking up prescriptions at the pharmacy.
4. Bringing envelopes or parcels to the post office.
5. Accompanying Rachel to doctor appointments or hospital procedures.
6. Getting respite assistance for #1-5 when Bob is ill.
7. Making telephone calls (to the insurance company, doctor’s office, gas company, cable company, etc.).
8. Asking a friend to have power of attorney and seeing a lawyer for the proper documents.
9. Moving bank accounts from our old town to our new town.
10. Applying for disability (?)

Our updated list is very straightforward, but on Sunday, the road to it was full of twists, turns, and potholes. Basically, I found it very difficult to choose just one task from the list and strategize on it. The more I tried to do so, the more overwhelmed I felt. After awhile, I started saying really supportive things to Bob like, “You just don’t get it!” to which he responded with equally helpful (and completely understandable) statements like, “Why are you treating me like I’m screwing up?”

After many tears, I realized that I was scared. Really, really scared. Half of my brain looked at the list and said, “No problem. These tasks are easy, and they fit on a single sheet of paper, too!” The other half of my brain was freaking out in the worst way. I don’t like depending on other people to do things for me. It’s not just that my ego is attached to my independence. It’s also that I like routine and fear change. So, the part of my brain that was freaking out was thinking, “What if we get everything set up, and then one day, the person who helps me make phone calls moves to Tahiti, or breaks her leg, or goes to graduate school? Then, I’ll have to make phone calls (gah!) to find another stranger (gah!) to help me make phone calls (gah!), because I find it hard to make phone calls (gah!). “

You see the labyrinth in which I often get lost.

While the strategy list is helping us to create a support network, I am finding myself drawn to the tasks that I most deeply want to do on my own. And although the list has only one new activity for me to try, I later decided on two tasks that I could attempt this week: going to the bank to open an account, and going to the co-op to do a little food shopping.

Monday
In the morning, I made the five-minute walk to our local bank. Fortunately, our bank is set up in a very organized way. In most banks, when you’re looking to open an account, you have to stand around and wait to pounce on the next available account representative. I find that approach stressful. At our local bank, thank goodness, there is a very lovely woman whose only job is to find out why you have come to the bank and how she can help you. So, I told her why I was there, and she immediately brought me over to the desk of another very lovely woman, who helped me set up the account.

I had worn my beloved Peltor Optime 101 noise reduction headset when I was walking, but of course, I had to take it off in order to converse about the account. Fortunately, the bank was fairly quiet. Even more fortunately, my account representative did not feel it imperative to fill up every available silence with annoying chit-chat about the weather or her mother’s hernia operation. She stayed focused. I was pleased. All was going well.

And then, suddenly, I realized that I’d lost track of the conversation. It happens Every Single Time. Though I didn’t look at a clock, I am relatively certain that my ability to process incoming speech ended about 10 minutes after my arrival. That’s my usual window. After that, I start getting lost. It goes like this: I’m following along, doing just fine, following along some more, and then, the words being spoken just disappear into thin air, and my brain feels as though it’s in zero gravity. I try to follow the word pictures that get spelled out in my mind while the person is speaking, but I can never keep up. When I start falling behind, I hang onto some “keyword” that I can see in my head and completely miss what the person is continuing to say about it. In this case, the woman was talking about how all the accounts at the bank will soon be online and accessible from my home computer. I saw the word “computer” in my mind, and after that, the woman might as well have said, “I think your haircut is dorky,” because I could never have parsed the sentence.

Despite the usual setbacks, it was a successful trip, and on the way home, I was able to reflect on what had happened. I realized something significant: for all intents and purposes, I am like a deaf person who cannot speak. That is, I am limited in my ability to hear speech in such a way as to understand everything that people are saying, and I often cannot come up with the words with which to make a meaningful response. It’s ironic that the word “mindblindness” gets tossed around to describe autism when my experience feels much more akin to being deaf than blind. While I can’t see nonverbal cues, I can visualize perfectly well what might be going through the mind of another person; in fact, from time to time, this question becomes one of my Aspie obsessions special interests. But unless I am in a highly structured situation (like my therapist’s office) or in a very familiar environment (like my own home), I can’t process speech very well at all or speak in a truly purposeful manner to what is being said to me.

This major realization led me to the adaptive measures that I put into effect on Tuesday.

Tuesday
I went to the co-op as though I were deaf and could not speak. I wore my noise-reduction headset and left it on for the entire duration of the trip.

Up to that point, I had been making exceptions. At the thrift store, for instance, when I couldn’t hear someone, I’d take off the headset. It worked well, but I know that it’s a risk to go without ear protection, even for a minute or two. In that short space of time, I might hear a siren, or loud music, or people shouting, and then my nervous system is like a wire that won’t stop vibrating for several hours. So, I made up my mind that for my co-op trip, there would be no exceptions.

If this experiment were to work, I had to prepare. So, the night before, I typed up a card that said:

Hello—

I am wearing these ear protectors because I have a hearing disorder.
My shareholder number is 1234.
I will bag my groceries myself.
I will use my debit card with no cash back.

Thank you!

While I was at it, I typed up analogous cards for depositing a check at the bank, checking in at the clinic to see my therapist, mailing an envelope or parcel at the post office, and picking up my prescriptions at the pharmacy. If the experiment at the co-op worked, I might be able to have some success at other places in town.

The next day, before I left for the store, I emptied out the backpack I usually use when I’m outside my house and replaced it with a small bag containing my wallet and the card I’d written out. Then, I tossed a tote bag into my now-empty backpack to use for hauling the groceries home. I wrote up a grocery list for Ash and me, put on my headset, and set out on my great adventure.

When I got to the co-op, I started in the produce section, and then walked around the store, finding most of the things on my list. A few times, some people were talking loudly, and I could hear them, but not to the point of feeling jangled by it. My only anxiety was that I’d meet up with someone I knew and feel pressured to hear and to speak. Fortunately, that didn’t happen. After I’d filled up my basket, I walked over to a place near the checkout line and got out my explanatory “I can’t hear you” card, along with my debit card. Then, I picked an empty checkout line and threw myself at the mercy of fate.

The cashier I’d chosen smiled and said hello (I imagine), so I immediately put my “I can’t hear you” card on the conveyer belt and pointed to it. She nodded, read it, and then looked up and beamed a smile at me that was nearly blinding! I couldn’t believe it. At one point, as I was putting the groceries in my bags, someone came over to help, and the cashier waved the person away on my behalf. The only glitch was that I’d forgotten to put the PLU number on the tofu bag, so the cashier didn’t know which type of tofu she should charge me for. This led to her attempting to ask me how much it cost by showing me different numbers of fingers and mouthing the words. I had no idea how much it cost, but I just accepted her choice and moved on. I finally got everything paid for, put my groceries in the bags, waved goodbye, and walked home feeling about as jazzed as I’ve felt for a very, very long time.

When I got home, I was so excited that I forgot about the “coming home” part of the deal: whenever I go out into the world, I must get under my weighted blankets upon arriving home, even if I don’t see the need. I had remembered it after the trip to the bank, but after the co-op, I was practically flying around the kitchen, telling Bob all about the trip, putting the perishables into the refrigerator, and showing him what I’d bought when he said, “Aren’t you supposed to be under a couple of weighted blankets right now?”

What would I do without that man? I’d have to wear post-it notes right over my eyes.

Later that day, I sent an email to a school for the deaf in my area, explaining my situation and asking whether they might have any community support services for someone like me. This morning, I got two emails. In one, the person asked whether I wanted to sign up for a class in American Sign Language. In the other, the person congratulated me on my creative strategy for dealing with noise, directed me to a Yahoo group called DeafVermont, and asked whether I wanted to be put in touch with someone for work-related assistance. Wow! I don’t know what will come of these contacts, but it’s pretty nice to have someone write back and offer to help.

I could get used to it.

7 comments

More Adventures at the Thrift Store

August 9, 2009 Rachel Communication, Community, Sensory Processing Issues, Spectrum Pride, Volunteer Work

As I mentioned in a post last week, I am volunteering at my local thrift store again. My plan is to work there once a week, though I won’t always know what day I’ll be there. Despite my love of routine, there are so many variables that affect my ability to be out in the world that I’ve decided (gasp!) to be flexible about it. Here are my basic guidelines:

1. If I’ve done something out in the world one day, I can’t work at the store the next day.
2. If I’m feeling overloaded one day, I can’t go to the store the next day.
3. If I go to the store and immediately see that it’s too crowded and noisy (even when I’m wearing ear protection), I need to leave and come back another day.
4. If I go to the store and it starts out quiet, but later becomes crowded and noisy, I need to leave for the day.

This past Thursday, I wore my new Peltor Optime 101 noise-blocking headset on the way to the store. It blocks most sounds completely and keeps the others far enough in the background to give me some distance from them. For the first time, I understand the concept of “background noise.” Once I got to the store, I walked in and scoped out the situation. The environment seemed both quiet and uncrowded, so I decided to give it a try. When I went into the stockroom, I took off the headset, said hello to everyone, and asked the housewares manager whether I could work in the linen section. She said she’d love me to. And then, just when I could have taken refuge among the napkins and tablecloths, I summoned up the courage to tell her what I needed regarding my sensory issues:

a) The best place for me to work is in the housewares section, because it tends to be quieter and less crowded than other sections of the store.
b) I need to wear my headset during my shift to fend off sensory overload, so if anyone needs to talk to me, he or she should just tap me on the shoulder, or jump up and down in front of me, to get my attention.

She smiled and said both were fine. So, I stopped holding my breath, put my headset back on, and began bringing order out of chaos in the linen section.

Being there with my headset on was an interesting experience. Shortly after I’d begun my shift, a guy that I know from one of the antique stores in town noticed the headset (unless you’re legally blind, you couldn’t miss it) and asked me whether I have sensitive hearing. So, I took off the headset for a moment and said, “Yes! Very!” I then told him what I’d told the housewares manager about getting my attention, and he immediately started doing a little dance in front of me, which made me laugh. It was another reminder of why I moved to this town in the first place: I’m not even close to being the most eccentric person here.

After that, I concentrated on folding the towels, napkins, and other linens and making them look orderly on the shelves. I even reorganized the shelves that hold the fabric remnants. The fabric had been placed on the shelves in no particular order, so I took everything down and organized it by color. When I was done, the shelves practically shouted “An Aspie has been here!” That was fun.

About halfway through my shift, the store got a little more crowded. More people were coming into my area and looking at the stuff I was folding and arranging. Being in such close proximity to people is always difficult for me. I generally need an arm’s length of space in order to feel comfortable. With people so close, I had to shift my focus and move my ordering process elsewhere for a little while. It was hard, but I managed it okay.

Perhaps because my sensory needs were well taken care of that day, I began to notice my emotions much more than I usually do when I’m out in public. I began to feel sad that I had to wear the headset, because it meant that I couldn’t chat with the customers or readily help them. While I could certainly take off the headset (or even move it back slightly from my ears) in order to hear people speak, it didn’t make for easy interaction. The customers were much less likely to come up to me and ask for my help; in fact, only one person did so on Thursday. In my pre-headset life, at least a half-dozen people would ask me a question on any given day. So, while tuning out sound allowed me to more comfortably focus on my task of organizing objects, it also took away a part of the job I’ve always really liked.

The more I felt the sadness, the more I understood something about my experience of overload in general. When I start any kind of task, I am “switched on” to that task, and I’m ready to continue the task until something breaks my hold on it. Being switched on when putting objects in order is usually not a problem for me, but being switched on when I’m helping customers is very tiring. When I was working at the store without ear protection, people regularly asked me questions about where to locate things, and I always enjoyed being able to help them. The problem was that once someone asked me a question, I got switched into “relating to people” mode and was endlessly ready for people to engage me. The result was that I was wide open—mentally and emotionally— to anyone who walked in the door. No wonder I came home feeling overstimulated and exhausted.

Clearly, I cannot be switched into “object ordering” mode and “relating to people” mode at the same time. From a sensory point of view, blocking out sound makes an enormous amount of sense, but from an emotional point of view, it’s a bummer. The only way to get past the sadness is to look at what I do best and what I enjoy most when I’m at the store: I organize things into orderly patterns. Not only am I good at it, but it also gives me a great deal of satisfaction. I’m also good at relating to people in a structured environment—but only for a few minutes. Could I do it for an hour? Sure I could. I could also drive my car into a brick wall, but I don’t really care to have the experience.

At any rate, on Thursday, I finished with the linens after about an hour and a half, and I began to organize other objects in the housewares section. Pretty quickly, I realized that I’d gone over my limit. I could feel the disorientation start, and I figured out why: I have to structure my work by task, not time. I need to define a task that will take me an hour and a half at most, and when I’ve finished the task, I need to know that my day is done. I do not need to start ordering anything else in the store (even though my Aspie brain keeps saying, “But, but, but…You’ve only organized one part of the store. What about everything else? Wouldn’t that be fun?” )

Once I’d called it a day, I went looking for the folder in which to write down my hours and discovered it in the possession of the new volunteer coordinator. It was a great opportunity to introduce myself and to talk with her about my sensory needs. The store manager had already briefed her about me, so I didn’t have to tell her much. I simply said that I needed to wear the headset, and that I was going to try and come into the store once a week, although the day might change from week to week. She was very supportive about all of it, and we ended up having a good conversation.

Before I left the store, I discovered a treasure: an old Brownie camera, with the flash attachment and some bulbs still in the box. I don’t know how many of you remember Brownie cameras, but the first camera I ever owned was a Brownie. My parents gave me one in 1967, when I was nine years old.

When I saw it at the store and started playing with the various buttons, it brought back a flood of memories. In the back of the camera is a little circular red window that allows you to see which frame you’re on. You advance the film manually until you get to the next number. A roll of film can have 8, 12, or 16 exposures. I would not have remembered any of this stuff without seeing the camera. It was such a rush. My husband thought I was a bit nuts to buy it until I explained to him that I have very few things from my childhood, and few really good memories, and that using my Brownie camera is one of my favorite memories of all time.

Here is the front of the camera with and without the flash attachment:

106_1482

106_1480

Here is the top of the camera:

106_1479

To take a photo, you hold the camera at waist level and look through the top. Here is a picture of my brother standing on the steps of our house and taking a picture with the Brownie. (The other person in the picture is a girl who lived two houses away.)

brownie camera 1

In this photo, I’m sitting on the front steps holding the Brownie:

brownie camera 3

The following photo is one that my brother took on the first day we had the camera. I’m standing at the end of our walkway, and I’m holding my baseball glove over my right shoulder.

brownie camera 2

I’m amazed by how strong, confident, and happy I look in this picture. I remember the day very well. We were so excited to be taking these pictures. The technology seemed so advanced! Of course, I never imagined that I’d be taking digital photos of a Brownie camera, or putting these old Brownie photos on a website. It’s incredible how much has changed since those days.

11 comments

Back at the Thrift Store

July 30, 2009 Rachel Anxiety, Communication, Community, Sensory Processing Issues, Spectrum Pride, Volunteer Work

My plan for this week was to meet with my new Aspie friend on Monday and to try working at the thrift store on Thursday. To make this plan workable, I began implementing my new strategy of giving myself two days at home to rest and recharge after I spend time with people outside my family. Monday’s visit went swimmingly, so after two days to myself, I decided to give the thrift store a try.

I was just as anxious this morning as I was before Monday’s visit. I gave myself plenty of time to have a workout and a good breakfast so that I could be as relaxed as my Aspie nervous system would allow. I now own a Thumper massager, and Bob used it on my back before we went to the store. I wanted Bob to walk me there and to do some errands nearby so that I’d get to see him once or twice during my shift. Having a much-loved and familiar person there seemed very important for re-entering the life of the store, and his presence was very reassuring (as always).

The reception that I got from the staff was WONDERFUL. Several people gave me hugs, and everyone was very happy to see me. I asked for something quiet to do, perhaps in the linen department? The housewares manager pointed to four baskets of linens and said, ”I just finished pricing these. You can put them out if you like.” Heaven!

I worked in the linen section for an hour and forty-five minutes, organizing everything to my heart’s content. There were all kinds of things to put out on the shelves: towels, sheets, pillowcases, tablecloths, runners, placemats, napkins, potholders, curtains, pillows, blankets, and quilts. In addition to putting out the new items, I organized all the items that were already out, which was no small task. You never realize how messy linen departments get until you’re the person who straightens it all up. Because I like organizing just about anything, I had a wonderful time at it and was very proud of how everything looked when I was done.

My only annoyance had to do with my Sonic Defender earplugs. They’re made to block out loud noise but still allow for normal conversation. Usually, I can wear them when I’m out and hear Bob pretty clearly. In the store, however, in order to hear anyone properly, I had to take one of the earplugs out every time. I didn’t mind taking the earplug out so much as getting it back in, which is always a bit of a chore. It’s possible that I know Bob’s voice so well that I hear it better than anyone else’s when we’re out in the world; it’s also possible that he knows to speak clearly when I’m wearing the earplugs.

I’m going to have to come up with a better plan for ear protection. I might just use my foam earplugs and then wear a small stereo headset unattached to an iPod. The foam earplugs are very simple to put in or take out, and with the headphones on, people will think I’m listening to music. They’ll either decide not to talk to me at all, or they’ll tap me on the shoulder to get my attention. Either way is fine with me. The store is a relatively quiet place, but there are lots of conversations that would distract and overload me without ear protection.

I’m in the midst of doing some research into whether I can get a pair of hearing aids that actually deamplify sound. It seems to me that if you can put something into your ear and turn up the volume, you ought to be able to put something into your ear to turn it down. I’ll let you all know if I discover anything interesting along these lines.

Apart from my frustration with the earplugs, my time at the store today was a great success. I was so happy to be there and to see everyone. And I’m very glad that I am officially “out” to the staff. I feel very comfortable with people knowing that I’m autistic. I don’t feel pressured to be a certain sort of person anymore, I don’t mind being awkward, and I don’t have any inclination to fake being NT. Why on EARTH would I want to do THAT? Being autistic is so interesting!

17 comments

Places to Go and People to See

July 26, 2009 Rachel Anxiety, Autism-Literate Therapists, Communication, Friendship, Sensory Processing Issues, Women and AS

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!

16 comments

There are No Wheelchair Ramps for Us

July 23, 2009 Rachel Community, Disabilities, Sensory Processing Issues, Spectrum Pride, Stimming

I’ve been thinking lately about the difficulties of having a misunderstood, invisible condition. Many people do not understand how autistic people see the world, partly because of the misinformation out there, and partly because our condition manifests itself largely in the privacy of our own brains. Certainly, we do things people can see, like stimming, or melting down, or being out of sync in a conversation, but most people don’t understand what underlies our behavior.

On Tuesday, I had a difficult experience in a store in my town. Ashlynne and I had decided to go out for some mother-daughter time, and at about one o’clock, we set off for the bead store. Usually, I wear my sunglasses and Sonic Defender earplugs when I go out anywhere, but in my excitement about going out on the town with Ashlynne, I forgot.

We had chosen to go to the bead store because the place is very spacious, and I thought I’d look for some interesting beads for my art projects. Unfortunately, I’d forgotten that they play Very Loud Music there. It was so loud that when we walked in, I immediately stopped and said to Ashlynne, “Wait, wait! I need my earplugs! Now!” Fortunately, I keep an extra pair in my bag, but in my agitation, I couldn’t find them. Ashlynne offered to hold the bag open, and I finally located them. My hands were shaking, but I got the earplugs in.

The music was so loud that I could still hear it at a high volume, so I asked Ashlynne to ask the man at the counter to turn it down. He did. A little. I could still hear the music, but it was at a fairly reasonable volume, so I kept looking for beads. However, I noticed that I had begun to feel afraid. I stopped myself for a moment and asked myself whether I was afraid of what might happen (i.e. that I would become painfully overloaded before I got out of there) or whether I was afraid of what was happening at that very moment. I decided that the fear was more about the future than the present, so I kept on. I wanted to see how the experiment would work out.

Listening to music and talking to someone at the same time is generally impossible for me. Listening to music and and trying to think straight about anything is almost as big a challenge, and about ten minutes after entering the store, I realized that I’d reached my limit. I just wanted to cry. Why do people have to play such loud music? Why is that fun? If the place were quiet, I could have spent hours there. But it wasn’t quiet, so I took the beads I had found and went up to the counter to pay for them—at which point the man at the counter said, “Didn’t you mark down how much each set of beads costs?” Oh. My. G-d.

I said, “No, I didn’t see a pad and pencil for that,” so he gave me one. And then, I had to go back around this big store looking for these tiny beads, and I thought I was just going to break down and weep. I felt so dumb, so weak, so useless, so victimized. I know it’s just neurology, but that’s how I felt. With Ashlynne’s help, I got all the beads priced and paid for. When we finally got outside, I said to her, “I would really like to salvage this afternoon, so would you just hang out with me a bit until I calm down?”

She said, “Sure, mom, no problem.” So I stood outside a quieter place and did joint compressions for a few minutes. It really helped. From there, we decided to go to the thrift store which, by comparison, was extremely quiet. We had a really good time there. I got a tank top, some trinkets for my art, and a couple of shawls that I can use for tablecloths. I said hi to a couple of people I know there, and it felt good to see them. As places go, the thrift store is the friendliest place in town for autistic me. Even before they knew I was autistic, the staff always encouraged me to choose the tasks I wanted to do. I’d like to go back to working there an hour a week, if I can manage it. I don’t think I could commit to coming in on the same day each week, but I doubt very much that it would be a problem for the staff.

Anyway, after the whole experience at the bead store, I began to think about what the world would look like if people had to take into account our disabilities. What if every public building and private business had to make its environment accessible for autistic people? If I could create such a law in my local community, here is how the law would read:

To make our town accessible and welcoming for autistic people, all citizens, public buildings, and private businesses must adhere to the following rules:

1. All public buildings and private businesses are prohibited from having background music, and all TVs in said locations must be turned off. Using an iPod, portable radio, or other device with headphones is an acceptable alternative for individuals who wish to hear music or listen to the radio while outside their homes, so long as the volume is not turned up so high as to allow another person to hear it.

2. Aisles in any building must be wide enough so that two people can occupy opposite sides of an aisle without inadvertently touching each other.

3. When in a public building or private business, people must use their inside voices and refrain from small talk. When outdoors, people must refrain from loud cursing, the uttering of racial and ethnic slurs, and other forms of aggressive verbal behavior.

4. Cell phones are hereby banned from all buildings within the town limits, with the exception of each person’s private domicile or car (so long as said car is not moving and the windows are closed). If one is not within a reasonable distance of one’s home or car, using a cell phone is permissible in a public bathroom, so long as the call is limited to not more than two minutes.

5. Each place of business must post the food smells or other fragrances one may encounter upon entering said business.

6. If any resident wishes to run a lawn-mower, chainsaw, or other power tool, he or she must give at least one week’s notice to allow his or her autistic neighbors to make plans that do not include sitting on their front porches and enjoying the afternoon.

7. Every restaurant must have a quiet zone in which autistic people can sit and eat in peace.

8. Every professional must make every attempt to see patients and clients on time. If said professional is running late, he or she (or a member of his or her staff) must contact the patients or clients and apprise them of that fact.

9. Every building must have a separate, quiet waiting room for autistic people.

10. No autistic person shall be detained or harassed for stimming in public.

I’m sure that there are many more clauses one could add to such a law, but these ten points would be a very good beginning.

12 comments

The Education of Kids on the Spectrum

July 20, 2009 Rachel Education, Occupational Therapy, Sensory Processing Issues, Spectrum Pride

I’ve decided not to pursue volunteering at the local school for autistic youth, and on Friday, I wrote a short email to my contact person to let her know. I’ve concluded that she is a very nice, enthusiastic, well-intentioned person who cannot focus on what I’m saying to her. I’m troubled that we weren’t able to have a meeting of minds, but I’m starting to put my energies elsewhere.

In the course of the entire process, however, I’ve found myself with a number of questions about the outcomes for teaching autistic kids—questions for which I have very few answers.

The school in town has a very focused and well-articulated mission statement. Its goal is to prepare students for paid employment, independent living, and integration into the local community. To these ends, the school a) implements an educational plan for each student that is largely driven by the special interests of the student, b) teaches independent living and vocational skills, c) provides training in social skills (such as how to make and retain friends, how to read nonverbal cues, and how to socialize in a group), and d) offers physical fitness and sensory integration work. The school makes use of different autism treatment options, including ABA, depending on what works for each student and family.

In short, the school’s aim is to integrate autistic people into the community by teaching them how to survive in a neuro-typical world. It’s a very good idea to give kids as many skills as possible for navigating the world they live in. The younger people who have posted to this blog have very positive things to say about the sensory integration work, social skills coaching, and other strategies that have helped them thus far. I wonder how we older autistics would be doing if we had had access to diagnosis and treatment when we were younger.

By the same token, I wonder what will happen to the younger people when they start to reach their thirties, forties, and fifties. Will life begin to feel more difficult because they have been making use of skills that do not come naturally to them? Will the work of integrating themselves into the larger community prove to be something they cannot maintain over the course of a lifetime? And if so, what support will be available for people who have been labeled high-functioning and have the resume to prove it?

I ask these questions because I have heard from so many people in mid-life who talk about the necessity of letting go of social adaptations that have become debilitating. I hear from people who feel housebound. I hear from people who can no longer work. I hear from people who have difficulty keeping food in the refrigerator because they have such an aversion to going to the grocery store. In other words, I hear from people like me.

I liken our situation to that of a friend of mine who had polio when he was a child. The illness left him partially disabled, but in his 50s, he began to feel unexpectedly and seriously debilitated. He found out that he has a condition called Post-Polio Syndrome (PPS). An article on the website of the National Institute of Neurological Disorders and Stroke describes the apparent cause of PPS in the following way:

“The poliovirus attacks specific neurons in the brainstem and the anterior horn cells of the spinal cord. In an effort to compensate for the loss of these neurons, ones that survive sprout new nerve terminals to the orphaned muscle fibers. The result is some recovery of movement and enlarged motor units.

Years of high use of these enlarged motor units adds stress to the neuronal cell body, which then may not be able to maintain the metabolic demands of all the new sprouts, resulting in the slow deterioration of motor units. Restoration of nerve function may occur in some fibers a second time, but eventually nerve terminals malfunction and permanent weakness occurs.”

In other words, the neurons that survive the poliovirus end up supporting not just the muscle fibers they were made for, but the muscle fibers whose neurons did not survive. After many years, the neurons that have been carrying all the extra weight begin to break down under the strain. The result is a second loss of functioning that can include increased fatigue, muscle weakness, and even muscle atrophy.

I raise this analogy because it so aptly expresses what many of us older autistics are feeling. We have an autistic neurology, and we’ve asked it to adapt, in a number of very complex ways, to the aims and values of neuro-typical society. After a lifetime of trying to pass, one person’s autistic nervous system can feel as though it’s done the work or three or four nervous systems. Last week, I said to Bob, “When you visit your frail 93-year-old father, please remember that how he looks on the outside is how I sometimes feel on the inside.”

I wonder whether the members of our “sink-or-swim” generation are feeling these effects because we had no educational supports, no therapy, and no explanation as to who we were. Perhaps because we were flying blind, we worked against ourselves for a long time, in a multitude of ways, and we unwittingly harmed ourselves in the process. After all, who wouldn’t feel tired after forcing a very sensitive neurology to support decades of neuro-typical activity?

Will the generation coming up fare better than we did? I hope so, but I have my concerns. In addition to learning social skills and sensory integration techniques, are the younger people being taught to have respect for being autistic? Are they being encouraged to value their autistic traits? Are they being taught to pay attention to their sensitivities? Do the people who teach them understand autistic people, or are they just looking to change behavior so that their autistic students will appear to be like everyone else?

So little research has been done as to the long-term effects of being autistic in a neuro-typical world. My generation, in its ad-hoc attempts to deal with a nameless condition, is all but invisible to the researchers. I hope the next generation will make itself better known.

20 comments

Dreams

July 10, 2009 Rachel Anxiety, Belonging, Childhood, Community, Friendship, Grieving, Loneliness, Sensory Processing Issues

Dreams

Hold fast to dreams
For if dreams die
Life is a broken-winged bird
That cannot fly.

Hold fast to dreams
For when dreams go
Life is a barren field
Frozen with snow.

–Langston Hughes

Thank you to everyone for your love and support after my last post. Every word means so much to me.

Not surprisingly, I’ve just come out of another bout of grief and tears this morning, feeling the impact of so many dreams that have died. Certainly, some of my dreams have come true, and my grief in no way diminishes my gratitude. But right now, the grief is hitting me like a tsunami. Every day is a constant process of letting go of dreams that have propelled me all my life. I thought I’d let go of all the big ones, but I’m still hanging on, and I have to stop. Hanging on just brings me heartache.

I’m going to write about the dreams I’ve come up against today. Writing helps me feel like I have some control over what’s going on, but please don’t take this piece as any kind of indication that everything in my mind feels orderly and precise. At the moment, I’m feeling about as burned out and confused as I’ve ever felt in my life.

Where Did the Past Go?
This morning, I was sitting in the kitchen window, looking out at the orange lilies in the next-door neighbor’s yard. The light was dappled by the chestnut tree, and the shaded yard nearly had a feeling of autumn about it. But it’s not autumn, and what I was seeing was a memory from when I was a child. The only flowers we had were the same type of orange lilies; they grew by the side of our house. I had a very strong sense memory of being a little kid, living in that house, running around with my brother, feeling like everything was okay. Of course, most of the time, I didn’t feel like it was okay. Most of the time, I was anxious and fearful. But on a Saturday morning in summer, when all we had to do was go down to the drugstore, buy baseball cards and candy, and spend the rest of the day playing baseball, or wandering in the woods, or pretending to be Batman and Robin, life felt like it ought to feel—happy, hopeful, innocent.

My dream was that it would stay that way, and that my brother and I would always be close, but of course, that didn’t happen. My parents are gone, and my brother is lost to me. For the sake of his privacy, I won’t go into details, but suffice it to say that he is not someone I want to know anymore (and he appears to feel the same way about me). How we started out being innocent and happy, and ended up where we are now, is hard to explain. I could tell you everything that happened, but it would never be the whole story, because the whole story is not a collection of events, but the complex working out of pain, fear, love, anger, and confusion. It feels like my original family got put into a centrifuge, and each of us got spun out in different directions, never to return. It’s overwhelming for me, and unbearably sad. I want those days back. I want that dream back. I want to make it all work out just fine. But it’s all over. I can’t change any of it.

I’m Not Who I Was Supposed to Be
I was reading an article today on the Internet, and I noticed that the author was the daughter of my childhood piano teacher. Her name stood out to me because of a particularly sweet childhood memory. One day, while I was at my piano lesson, playing a piece that I was going to perform in Boston, the author and her sister, ages 2 and 4, were standing on either side of the piano bench, jumping up and down, screaming their heads off. When I was done with the piece, my piano teacher said, “If you can play a sonata through THAT, you can play it anywhere!”

So, today, I did a little bit of searching about what this woman has been doing with her life, and it turned out that before writing a well-reviewed book, she had been a producer for Dateline NBC. That’s when another level of grief hit. You see, I was a really smart kid. I mean, really smart. I taught myself to read. I got all As in school. I nearly aced every SAT and college board I took. I was gifted in music. I won a statewide piano contest. I got into an Ivy League university. I was supposed to be successful. I was supposed to be a producer, a director, a musician, a lawyer, a doctor or Anything Other Than What I Am. That was the dream, and it guided my entire childhood and adolescence. Now, I look at people who couldn’t do what I did when I was just a kid, and I see that there is no way I could ever do what they’ve done as adults.

Every now and then, I torture myself by going online and searching for the names of people from high school, just to see what they’re doing. It’s unbelievable what people are doing. They’re out in the world being important and successful. I keep asking the question: How can people have surpassed me like this? I never expected to be famous, but I once was full of promise. Could I have ever worked at the jobs they have? No way. I know it. And yet, I can’t quite grasp why not. I know that raw intelligence isn’t everything. I know that I don’t understand (or respect) social politics. I know that I get overloaded in groups of more than two people (and sometimes even that’s a stretch). I know all these things, but I still can’t quite accept what’s happened. The gulf between who I was supposed to be and who I am is so deep and so wide that my mind can’t take it in and make any sense of it.

It’s like looking at someone who has died. How can the person be alive one moment and gone the next? The mind can’t go there. You want to say to the person, “Just wake up.” You want to see where the person has gone off to. But you can’t. And that’s what’s happening to me. I still see myself as that person with the dream of doing Whatever She Wants, but I’m not that person. That person is gone. Where did she go, and when? At this point, I’m so sensitive to everything, I can barely go outside my door.

What Could Be More Important than the Approval of Others?
When I was in high school, I was determined to be one of the cool kids. Of course, I failed miserably, but what did that matter? There were other kids I could have hung out with—the ones everyone made fun of because they were shy and awkward and carried slide rules and pocket protectors. I liked them just fine, but I saw what they had to put up with. I saw the cruel things that people wrote in their yearbooks. I saw how people laughed at them every day. I saw that they were perpetual outsiders, and I fled from them because I wanted to be an insider.

So, as I got older, I straightened my hair, lost weight, wore conventional clothes, and tried to become acceptable. I’ve never stopped. I’ve been trying and trying and trying to be one of the cool people. I have a million faces, and I have a million clever things to say, all in the service of not wanting to be laughed at and rejected.

I cannot be weird. I cannot be an outsider. I cannot be looked upon as an oddity or a freak. I must be like everyone else. Those were my prime directives in life, and I once dreamt that I could fulfill them.

Guess what? Game over. Bye bye to that dream. See ya. Nice knowin’ ya. And no, you can’t ever come back.

You Mean You Don’t Want My Energy for Free?
When my daughter first started school, she was in the eighth grade, and I offered to volunteer at her school as a tutor. It’s a small school, and all the teachers wear many hats, but they didn’t want or need my help. Of course, they didn’t say it outright. They said, “That’s a sweet offer” and then proceeded to ignore me. Who knows why? Am I too smart? Too direct? Too weird? I don’t know. Once the homeschooling was done, I was hoping to use my skills as a teacher, and I was offering them for free. But no one ever took me up on it.

At this point, I wouldn’t be able to help out at the school because of my sensory issues, but it still hurts that I never got the chance.

Seeking My Fellow Aspies and Auties
Okay, now that you’ve come this far, let me get to the latest and greatest dream-that-must-die. Remember the school for autistic young people, where the person was so excited to get my offer of serving as a volunteer? Where she said that they were completely open to my needs around sensory issues? Remember that? Sounded good, didn’t it?

The last email I sent them was on June 24, suggesting that we get together on June 30. That was over two weeks ago, and I haven’t heard a word—not even to say, “I’m sorry, June 30th won’t work, but how about some time in July?”

Now, I tried really, really, REALLY hard to not get my hopes up about this school, because things just generally have a pattern of not working out in rather mysterious and inexplicable ways. But, the truth is, I had my hopes up, big time. It wasn’t just about having something to do. It was about being around autistic people. Since then, I have found another Aspie in town, and we are emailing, but other than that, I have no local contact with anyone autistic. There are groups in Northampton and Amherst and Keene and Springfield, but I don’t live in any of those places, and I can’t possibly drive there and expect to have any energy left when I actually arrive.

So yeah, okay, I had my heart set on being at the school. I could walk there and be among some autistic people. Oh well.

I keep wondering what I’ve done wrong, and why people don’t want my energy when I’m willing to give it for free. Am I too direct? I’ve only spent 25 years and a gazillion dollars in therapy being told to be who I am and to ask for what I need. So I do, as clearly and as authentically as possible, and voila! I still get left by the side of the road. I’m a perpetual outcast. It’s really unbelievable. It would be okay if I loathed people and wanted nothing to do with them, but I love people and I want to help them. I just keep hitting the big brick wall that everyone else seems to see but me.

I just don’t understand. I try to be NT: no dice. I try to be myself: no dice. I try to be direct: no dice. I try to be gently patient and encouraging: no dice. I try to be super-competent: no dice. I try to acknowledge my challenges: no dice.

I would really like to get together with my new Aspie friend in town, but to tell you the truth, I’m scared. It seems like everything I touch in the outside world magically screws up. I keep thinking that there would be no social pressure with another Aspie. I keep thinking about how relieved I would feel to actually meet her in person. But I’d probably just cry for much of our first meeting, and whoops! another person gone.

So it’s hard to dream about anything that concerns other people. And I don’t want to be alone. So my life feels pretty awful right now.

Bob keeps saying that I just have to keep letting go of the dreams that don’t work so that other dreams can take their place. But I’m not sure I can bear any other dreams. They break my heart. If I could understand why things don’t work out, maybe I could change what I’m doing, but I don’t understand it at all.

15 comments

« Older Entries Recent Entries »