Archive for July 30, 2009

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!

© 2009 by Rachel Cohen-Rottenberg

17 comments

OMG! OMG! OMG! I’m Making a Friend!

July 27, 2009 Rachel Anxiety, Belonging, Communication, Friendship, Spectrum Pride, Women and AS

I spent an hour today with my local Aspie counterpart. She’s so nice, and she enjoys so many of the things that I enjoy!

Before she came to my house, my worst fear was that we wouldn’t connect, and that the hour would pass very slowly. As it turned out, when she walked up to my porch and started talking to Bob and me, I liked her immediately. Between giving her a tour of the house and talking about all the stuff that was beautiful and interesting to both of us, the time flew by, and it was time for her to go. It felt as though she’d been here for just five minutes.

In our house, we have a small library (which is actually a wide hallway framed with bookshelves all around). She had mentioned how much she loves seeing people’s books and had wanted to spend some time looking at ours. We didn’t get to spend too much time in the library today, so the next time she comes over, I’m going to let her explore the books undisturbed by any narration about my house. I lent her a copy of the book I had written (about my elderly friend), and we hugged before she left. Hugs!

I was very keyed up about this visit beforehand. Then, once she got here, and I became aware how short a visit it would be, I felt rushed. When that happens, I sometimes have a wee bit of trouble finding the words I want to say. So, I’m not sure if what I wanted to say made its way out of my mouth in any kind of coherent fashion, but who cares? We had fun.

To think that I had been feeling so insecure about meeting her! Last night, I was feeling that whatever social skills I used to have were NT emulation skills, and that they were gone. What would I use instead? I talked with Bob about my last seven years of nearly unabated social failure, all of which seemed to begin around the same time that my relationship with him started. I used to think that I hadn’t made any friends in the last place we lived because people had blamed me for Bob’s departure from the synagogue. I was very angry about it for a long time. All of those social failures have been psyching me out in the present, even in a new town in which people have been welcoming and friendly. I didn’t know whether I could make a friend anymore. I didn’t know whether I knew how, or whether I had the courage to try.

But now, I’m seeing my “social failures” in a whole new light. I’m realizing that the reason for my social difficulties was that my NT emulation skills went “bye-bye” when Bob and I got together seven years ago. For most of my adult life, I’d been in relationships in which I’d needed to somehow “improve.” I was always the one with the “issues,” the one who was never quite right, the one whose ”stuff” was always getting in the way. When I got together with Bob, I found someone who loves me just as I am. In fact, Bob loves things about me that had driven other people crazy.

So, when we first got together, I started to relax and to take another look at myself. I started to think, “Hey, I’m really all right just as I am!” And then, in my Aspie innocence, I assumed that the whole world would be equally excited at this unforeseen and utterly miraculous transformation. I was loved! I was fine! And I was ready to show the world who I really was! In my excitement, I started acting like an honest, straightforward, tell-it-like-it-is Aspie—even before I knew I was an Aspie! I mean, how brilliant is THAT? 

Not very. The results in the neuro-typical world were not good. Not good at all. My life became a constant series of culture clashes, as though I were speaking French in a country where no one had ever heard of France. But French was so natural to me. What was wrong with these people?

Oops.

I’ve finally realized that because of my relationship with Bob, my NT emulation skills have been absent for several years without my really knowing it. Much of that time, I’ve been leaping into all sorts of situations, trying to do the NT dance, and ending up feeling alone and alienated. Once I got diagnosed, I began to worry about all the problems I’d have once I gave up all pretense of being NT. Until last night, it hadn’t occurred to me that my NT emulation skills have been at the bottom of a landfill in Franklin County for several years.

And yet, miracle of miracles, my relationship with Bob continues to grow and thrive. What does that tell me? Can I actually be who I am? Can I actually make friends? Can I actually feel like a human being again?

I think so. I hope so.

© 2009 by Rachel Cohen-Rottenberg

20 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!

© 2009 by Rachel Cohen-Rottenberg

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. ;-)

© 2009 by Rachel Cohen-Rottenberg

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.

© 2009 by Rachel Cohen-Rottenberg

20 comments

Same World, Different Neurologies

July 17, 2009 Rachel Communication, Spectrum Pride, Volunteer Work

I’m about to say goodbye to my idea of volunteering at the local school for autistic youth. The reason? I’ve tried several times to articulate what I need in terms of how to structure my visits to the school, and I don’t feel like I’m being heard.

When I first wrote to the school, the person who answered the email seemed very enthusiastic about having me volunteer there. The hard part for me was the fear of getting overwhelmed by going to the school, meeting the teachers, watching the program, and then deciding how to proceed, all in one day. Thanks to the advice of my friend Sue, I decided to see whether I could break the meeting times into smaller pieces. Since my contact person had said, “We’re flexible and completely willing to meet your needs,” I felt confident about telling her exactly what I needed regarding my sensory issues. On June 24th, I wrote:

“The best way for me to proceed is to do things one at a time. So, perhaps
one day, I could come in and meet with you to talk over what your needs are
and how I can help. Then, another day, I could meet with Carol, or observe
one of your summer programs. If I try to do too much in one day, I’ll get
overloaded.

In general, one-to-one conversations work best for me, especially when I’m
meeting new people in a new place. Once I get to know people, and they get
to know my strengths and challenges, I can talk in a small group. It’s
work, but I can do it.

I could come in some time next week to talk with you or Carol. Would
Tuesday, June 30th work, in the late morning? Except for Friday, my
schedule is fairly open right now.”

I didn’t hear anything back at all for more than two weeks. As Crystal mentioned in response to a previous post, neuro-typical people sometimes get distracted and forgetful about things, but they don’t realize that we Aspies often need an answer one way or the other so that we can get on with our lives. That’s how I was feeling. I didn’t want to write again after I’d been so clear, so my husband offered to call the school and let them know that I needed an answer. The woman he spoke with was very apologetic and said they’d be willing to have me do whatever I’d like.

So, I wrote to my contact person again about setting up a time to meet, and this was part of her response:

“I think the best thing is for you to meet with me briefly and  then  observe so
you can see how we’re set up, so you have a better idea of what you’d like to do to volunteer. I’m open for anything that works for you!”

I know that this person is well-intentioned and very busy, but her response bore very little relation to what I had earlier said.  She says she’s open to anything that works for me, but she’s not responding to what I actually said would work for me. What I needed was to sit down with her and discuss what the school’s needs are before I observed the program.

Despite  my growing frustration, I decided to go on the assumption that she is too busy to meet with me separately from my tour of the school. Based on this premise, I took a different approach: I suggested that she tell me what the school’s needs are by email. Here’s what I wrote yesterday:

“Before I come in, I’m wondering whether you could send me an email with a
list of things I might be able to do as a volunteer. Having something to
think about ahead of time would give me a framework for observing your
program. When I’m walking into a new situation, I always do best with some
kind of structure.”

Could I have been any clearer? Here is a portion of the response I received this morning:

“It’s hard for me to give you a lot of information since we’re really flexible on
what people want  to do.  You could basically do anything. I honestly think you’d do
best if you came  in to visit with me…and then took a tour of the facility. That way,
you could see the students and  assistant educators in action and could get a feel
for the flow of our school. “

There are three problems here:

1) I don’t do well with being told that I can basically do anything I want. I need specifics, and I made that clear.

2) She told me what she thought would work best for me. I really dislike that, especially when I’d already told her what I know would work best for me.

3) She suggested that I come in, meet with her, and tour the facility on the same day. That’s precisely what I said I did not want to do.

I feel really sad. I don’t see a way to continue this conversation and get what I need.  We’re obviously talking at cross-purposes. I am trying to get her to do something she doesn’t want to do, and she is trying to get me to do something I don’t want to do. I don’t see a way out of this impasse.
 
© 2009 by Rachel Cohen-Rottenberg

14 comments

Activities of Interest in the World of Autism

July 16, 2009 Rachel Community, Girls and AS, Spectrum Pride, Women and AS

Autism Corps: USA

Over at Squidalicious, there is a movement afoot to create an Autism Corps, a federally funded organization to train volunteers to work with autistic children and adults. I’ve just joined up to help get the work going.

The Autism Corps petition describes the proposal in more detail. If you feel so inspired, please read it and add your name to the list.

World Inaugural Seminar on Girls and Women with an Autism Spectrum Disorder: Australia

Sponsored by Asperger Services Australia, this seminar will take place on Friday, August 7 and Saturday, August 8 at The Holiday Inn, Roma Street, Brisbane. The keynote speakers are Professor Tony Attwood and Dr. Michelle Garnett. Among the guest speakers is our very own Camilla Connolly. (Go Camilla, and thanks for the information!)

© 2009 by Rachel Cohen-Rottenberg

One comment

My Article in the Local Newspaper

July 15, 2009 Rachel Diagnosis, Spectrum Pride, Women and AS

My article on autism was published in our local monthly paper at the beginning of July, but it didn’t go live on the website until today. Here’s the link:

http://www.commonsnews.org/694/

Enjoy!

Rachel

© 2009 by Rachel Cohen-Rottenberg

14 comments

Thinking in Word Pictures

July 13, 2009 Rachel Childhood, Communication, Hearing, Modes of Thought, Word Pictures

According to my mother, I didn’t speak a single word until I was 2 1/2 years old. Then, when I started speaking, I spoke in full and complete sentences.

Because I was a first child, I might very well have saved up my words until I could put a sentence together and converse properly with the adults. It’s also possible that I took to print more naturally than to speech, and so simply didn’t bother to speak for a while. I’ve always intuitively understood the purpose of the written word, and I don’t remember a time when I didn’t know how to read.

Ironically, when I entered the first grade, I was completely confused by the Dick and Jane books. We worked on them every day, and the teacher spent each session explaining, in excruciating detail, how to sound out every word. I couldn’t imagine why she had to explain anything so simple in such a tedious way. I secretly thought to myself how lucky I was to know how to read, because if I had to learn it in school, I’d be lost.

One day, the teacher asked me to read aloud a page of the book. In the picture above the text, the father was juggling. So, although I could see quite clearly that the words said “See Father play,” I read the text aloud as “See Father juggle.” The teacher told me to sound out the words and to stop guessing, but I wasn’t guessing. “Juggle” was the word I saw spelled out in my head, and it was the right word for the picture. The word in my mind was more real to me than the word on the page.

I have since discovered that whenever I think, speak, or listen to another person talk, I see word pictures. That is, I see every word spelled out across my mental screen. Needless to say, I have never had a problem with spelling. Once I see a word, I can remember it quite easily. What’s more, when taking college exams, I could leaf through my notes in my mind until I found the page with the correct answer.

The written word has always been my natural medium.

© 2009 by Rachel Cohen-Rottenberg

10 comments

Comments are Open Again

July 10, 2009 Rachel Administrative

Hi everyone,

About a half hour ago, I noticed that comments got closed on my last post. I did not close them intentionally. I’m not sure what happened, but somehow, the little box that says “Allow comments on this post” got unchecked. From now on, I’ll keep my eye on it.

So please, comment away! I love hearing what you all have to say.

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