Archive for Autism-Literate Therapists

As I Said to My Therapist…

February 7, 2010 Rachel Autism-Literate Therapists, Communication

A few weeks back, I had a conversation with my neuro-typical therapist about the mysteries of neuro-typical socializing. Specifically, I was talking about strategies that Bob and I had been discussing regarding how to handle running into (no, not literally) people we know. For instance, every time that Bob and I have gone to the movies and run into folks we know, they have always tended to utter, in tones of apparent warmth and sincerity, words along the following lines:

“How ARE you? It’s so wonderful to SEE you! We should get together some time! We really miss you guys so much. You guys are so great. Good to see you!” And every time such an event occurs, my poor little Aspie brain believes every single word, even though nothing ever comes of any of these words. Ever. Ever, ever, ever, ever, ever. I truly fear these moments, because my poor brain can’t help but take the words literally, which means my heart can’t help but feel all warm and fuzzy, which means that I get all hopeful and happy, which means that I just get fooled again.

So, having described the gauntlet I have to run between getting my popcorn and finding my seat in the movie theatre, I said to my therapist: “What’s up with this? Why do people say these things and then not follow through?”

And he answered, quite matter-of-factly, “Well, people are open and engaging when you run into them, and they say all of these words, and everyone in the situation knows that the words don’t mean anything.” To him, it was so simple. He didn’t seem bothered or perplexed by this social ritual in the least. In fact, he described the situation in the same tone you might use to describe how to start a car.

I just about jumped out of my chair at the absurdity of it all. For a moment, I forgot that he was the all-knowledgeable professional and I was the socially inept Aspie. (It happens. Often.) So, instead of pondering his words thoughtfully, I launched into the following mini-diatribe:

“How the HELL can you people live like this? Do you think you have an unlimited amount of TIME on this planet? Do you not realize that life is too SHORT to fill it by talking all sorts of GARBAGE that you don’t really MEAN? I’m sorry to have to say this, but I am SO not the one with the problem here.”

He took it very well—by which I mean that he maintained his integrity as a therapist and looked at me in a benign and accepting manner. And then he said, “Our time is just about up for today,” and he wished me an early good Shabbos as he ushered me out the door.

He really is a very nice person, my therapist. I just don’t understand how he thinks. And he doesn’t understand how I think. It’s pretty interesting to try to translate back and forth across the divide, though.

© 2010 by Rachel Cohen-Rottenberg

10 comments

It’s the First Anniversary of My Autism Diagnosis!

November 3, 2009 Rachel Autism-Literate Therapists, Diagnosis, Spectrum Pride

A year ago this afternoon, I was getting ready to see an Asperger’s specialist, and I was very, very nervous. What if he didn’t diagnose me with Asperger’s? What if he did? As the hours crept by, I kept thinking, “You don’t have to go, you know. You can still back out. There’s still time. Go ahead. Back out. You know you want to.”

I’m so glad I went to the appointment! Here are the top ten reasons I’m celebrating my autism diagnosis today:

1. I have proof that I was right all along: I am different from other people.

2. Now that I know that my limitations are neurological, I take much better care of myself. I get more rest. I take more breaks. I have more time alone. I leave the driving to others. I protect my sensitive ears. And I don’t go to social events that only wear me out.

3. Instead of feeling like a loser because I don’t have gobs of friends and a busy social life, I’ve realized that a few good friends and a little bit of socializing go a long, long way. While others have to socialize for hours in crowded rooms, I get the same benefit after only ten minutes of pleasant conversation. Imagine all the time I save!

4. I no longer get angry when people talk to my husband and not to me. Instead of spending hours analyzing all the things my husband should have said or done to render me visible, I just say to him, “So, honey, was that enjoyable for you?” More time saved! Plus, instead of engaging in a conversation that I can’t follow anyway, I can sit back and watch my socially adept husband listen sympathetically to the entire life stories of others. Such fun!

5. When I find myself getting frustrated with people, I make fewer judgments about them. I’ve learned that my frustration usually stems from a sensory issue (such as when someone speaks too loudly or too quickly) or from a difference in basic wiring (such as when someone tries to make small talk). I still judge people based on character, but only when they do something really terrible—like starting a war to line the pockets of their friends. Other than that, I tend to lay off.

6. I’ve stopped going to psychotherapists who tell me that I need to work harder on my “issues” so that I can “soar” and reach my “true potential.” Instead, I now see an autism-literate therapist who helps me find ways to adapt to a world that is largely oblivious to my acute experience of it.

7. I can now explain to my daughter precisely why I can’t go to a mall, a video arcade, or an ice skating rink. Instead of coming up with hypotheses that sound suspiciously like excuses, I just say, “Sorry, hon. No can do. It’s the autism.”

8. Now that I know that my sense of “otherness” is the result of unchangeable neurological wiring, I no longer feel compelled to talk myself hoarse trying to get people to understand me.

9. After fifty-one years of life, I am finally growing into my own skin.

10. After a lifetime of searching, I have discovered a community into which I fit.

Thank you all for being part of it.

© 2009 by Rachel Cohen-Rottenberg

9 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

Thinking Locally

June 28, 2009 Rachel Autism-Literate Therapists, Belonging, Communication, Community, Happiness, Spectrum Pride

A few weeks back, when I decided to let go of my activities in the outside world, I had a feeling of wanting to start from my home base. I didn’t have the energy to make the hour’s drive to Massachusetts to see my OT, and I needed time away from the store to figure out how to be there without feeling like an NT impersonator. My only remaining outside commitment was to see my AS-literate therapist in New Hampshire every other week.

After my third visit to the therapist, I decided to stop going there, too. I liked the therapist very much. She was warm, attentive, and very encouraging. But the 35-40 minute trip to her office in New Hampshire felt like too much of a stretch. The drive made me feel lonely. Here I was, driving to the next state, to an unfamiliar place, to a town I didn’t live in, to get support for how to live my life back home. It made me feel desolate.

As I’ve let go of these activities, I’ve been happy to be at home much of the day, able to follow my internal rhythm, without the pressure of having to go anywhere at any particular time. I’ve been able to work in the garden, growing flowers and vegetables. I’ve been able to eat in a healthier way, and I’ve been getting exercise every day. I’ve even begun work on my book.

The more time I spend at home, the more I’m reminded that Bob and I didn’t buy a house in the center of town for nothing. We like being able to walk everywhere. We like leaving the car at home. So, it became clear that whatever I do with my life in the outside world, it has to happen locally. I have to find a way to stake my claim to the town I live in and find a place where I can be myself.

As it turns out, my decision to stay local is already bearing fruit. As I wrote last week, the manager at the thrift store told Bob that she had distributed my “coming-out” article to everyone on the staff, and that everyone was fine with it. On Friday afternoon, she sent me the following message by email:

“It has been so busy at the shop and we miss you terribly. All the staff have said is, ‘When is she coming back?’ So, please come back when you can and we will do whatever we can to accommodate your needs and to make you comfortable. We appreciate your thoughtful nature, your kind and generous spirit, your clarity, your beautiful presence. We honor your journey…come share it with us. Our very best wishes to you, my dear. Let us know how it goes. Hope to see you soon.”

Is that amazing, or WHAT? I forwarded the message to Bob, and before we lit the Shabbos candles on Friday night, he read it aloud at the dinner table. We both had tears in our eyes.

So now, I am thinking that I will start by working at the store for an hour, one day a week, just to see what I can do and how to make it work for me. I will probably end up going there more often, just to look around, because it’s a friendly place and they have lots of neat stuff there. I really love thrift stores, and it’s one of the friendliest and most interesting ones I’ve seen.

The next step is to make a time to meet with a staff person from the local school for autistic youth. I emailed my contact person last week, but I have not heard back yet. In any case, I feel good about the way that I’m managing the process.

Thank you to everyone for helping me find my way along this path.

© 2009 by Rachel Cohen-Rottenberg

8 comments

What Does “High-Functioning” Really Mean?

June 14, 2009 Rachel Autism-Literate Therapists, Communication, Diagnosis

More and more, I’ve been trying to avoid making a distinction between Asperger’s Syndrome and autism. Such a distinction feels needlessly divisive and confusing. The new report of the DSM-V Neurodevelopmental Disorders Work Group does away with the distinction altogether, removing the category of Pervasive Developmental Disorder (PDD), and replacing it with the umbrella term of Autism Spectrum Disorders (ASD). If the logic of the new draft is accepted, PDD-NOS, AS, and autism will fall under a single diagnosis of ASD, with varying degrees of severity.

I like simplicity and coherence, so this whole idea appeals to me. Given that AS is an ASD, the present distinction between AS and autism is maddening. And I’m not just saying that because verbal logic appeals to me. Fairness and honesty appeal to me, too. Saying that I have Asperger’s Syndrome feels more and more like a fancy way of distancing myself from the word autism, with all the fear and trembling that the term engenders in the general population. 

Enough of that. Time for some solidarity. The first order of business is to stop this nonsense and start using the word autism early and often.

I recently wrote an article for my local paper about my autism diagnosis and all the myths I’ve had to dispel in order to see myself clearly. In the article, I wrote that I was diagnosed this past November with “Asperger’s Syndrome, a high-functioning form of autism.” From that point on, I used the term Asperger’s Syndrome only two more times. In contrast, I used the word autism nine times, and the word autistic twenty-six times. I wasn’t particularly conscious of making these distinctions when I was writing the article. They just happened.

So, that’s progress. I’m about to come out in my local community as a full-fledged autistic person. Doing so feel absolutely right.

But then there’s this high-functioning adjective that appears every single time I define Asperger’s Syndrome. At the moment, there is no consensus in the scientific community about what high-functioning actually means. From what I can gather, it generally describes autistic people with a) average or above-average intelligence, b) a desire to relate to other people, and c) relatively normative language acquisition (even if language development happened a bit later than the norm).

Well, great. I can basically demolish all three parts of the definition in about five minutes:

a) Using an IQ test that relies upon verbal skills (such as the WISC) is not an adequate measure of the intelligence of autistic people.

b) Just because a person doesn’t show a desire to relate to other people doesn’t mean that he or she doesn’t have a desire to relate to other people. 

c) Using verbal language is only one way of relating to one’s environment and the people in it.

So what does high-functioning really mean? To me, it means that we can pass in a neuro-typical world. It means that we know how to pretend that we’re no different from anyone else, and that we have marvelously adapted to the norms of the larger community. The higher our functioning, the less of a nuisance we are.

Why, oh why, oh why does the world insist on defining high-functioning by how we appear on the outside, rather than by what’s happening on the inside? Perhaps it’s the neuro-typical reliance on reading nonverbal signals and making an educated guess about what’s going on inside. Do most people simply make the assumption that mind-reading is possible? Do they assume that they don’t have to go to the next level and ask us what’s going on inside? It certainly seems that way.

I’m perseverating about this whole issue right now, because last week, my AS-literate therapist said something that’s been bothering me. She told me about an Asperger’s support group starting in her area, and before I got a chance to get too excited, she said that I might not like it. When I asked her why, she said that most Aspies don’t have my social skills or level of insight.

Oy. Just when I thought she knew what she was talking about.

How does she know about my supposedly great social skills? From two sessions in her office? Yeah, I can definitely navigate my way around a therapist’s office. After all, it’s a highly structured, one-on-one interaction in which I’ve only had 25 years of practice.

I wonder what she’d think if she saw me out in the world. Actually, she might arrive at the same conclusion. I can fake it pretty well. The problem, as I described it to her, is that the gap between how I feel inside and how I appear on the outside is widening every day. She nodded her acknowledgment, but I don’t think she really understands what a crisis this is for me.

And as for my having more insight: Just read the comments to this blog. Or the content of any other AS blog. Or WrongPlanet. Or the many autobiographical books written by autistic people. Given that we don’t just yack all day long about nothing, we’ve had a fair amount of time to quietly observe human interaction and draw some amazing conclusions.

The truth is that I don’t feel particularly high functioning—at least, not in the way that the larger world defines it. There are so many basic tasks that are becoming more and more difficult—driving, cleaning my house, and food shopping. Being around other people right now is close to impossible, because while I’m sick of impersonating a neuro-typical person, I’m not quite sure what the alternative looks like. Plus, my sensory issues make spending large blocks of time with other people very difficult. I feel everything so acutely that it takes me days to recover from things that most people just shrug off.

So, I don’t know whether I want to keep going with using the high-functioning label. Why can’t I just say, “I have Asperger’s Syndrome, a form of autism” or even “I’m autistic”? After all, based on my behavior, people will draw their own conclusions about me. In fact, they may even be confounded by the idea that an autistic person can do whatever it is that I do.

Confounding people is the first step toward breaking down their stereotypes about autism. And that, my friends, is a very good thing.

© 2009 by Rachel Cohen-Rottenberg

18 comments

Letting Go and Starting Over

June 1, 2009 Rachel Autism-Literate Therapists, Eye Contact, Marriage, Meltdowns, Occupational Therapy, Parenting, Sensory Processing Disorder (SPD), Sensory Processing Issues, Sleep, Spectrum Pride, Volunteer Work

Last night, I reached a milestone in my life. And today, I am so relieved. Tired, but unbelievably relieved.

The backstory: We’re having a new ceiling put into our living room because the old plaster was flaking off. The process entails moving everything out of the living room into the dining room so that the contractors can work. The whole job will probably take another three days. So everything is piled up in the dining room, and I have to walk through the mess if I want to use the bedroom, the kitchen, or the bathroom. Did I mention that I hate clutter?

Yesterday, the contractors were supposed to be here at 9 am. I had planned to do some writing in my loft in the morning, while they were here, and then hang out in the rest of the house after they’d left. It’s always difficult for me to have people in the house, especially ones making lots of noise, so I figured I’d burrow into my loft for a few hours, and by the time I came out, they’d be gone.

Nice plan, huh? Unfortunately, the guys didn’t get here until 11 am or so. Isn’t it fun when people are late and blow your plans right out the window? I got very agitated. I could feel my nervous system panicking. They had good reasons for being late, but I felt like my day was getting totally disrupted. 

In addition to getting here late, the guys were here a lot longer than I’d thought they’d be, and the whole thing became very overwhelming and disorienting. There is only so long that I can hide upstairs before I need to go to the kitchen and get something to eat. And, of course, the irony of the whole situation is that the guys doing the work are wonderful people—friendly, conscientious, and good at what they do. In other words, they’re the kind of people that anyone without a jangly nervous system would love to have around.

But I’ve got a very jangly nervous system, and by the evening, it felt like my day had been turned upside down and shaken a few times. Needless to say, I started to get upset. The disorder in the dining room was driving me nuts. My nervous system was so keyed up that I was shaking. I was feeling angry, and I said so, but the anger very quickly turned to tears. My meltdowns seem to follow this pattern these days. I go through the anger part really quickly and then go straight for the sadness.

I felt really exhausted, but it wasn’t just because of the work on the house. What happened yesterday was just the proverbial straw that broke the camel’s back. What I’m really exhausted by is all the energy I’ve expended since forever in my ongoing quest to become neuro-typical. Now that I’ve realized that I don’t have to pretend anymore, everything I do out in the world feels impossible. Working at the store feels exhausting, because every single time I have a conversation with anyone, I have the following script running in my head:

“Okay, smile……Make eye contact. No! Not that much……Pause. Say something helpful, but don’t jump in too fast……Wait……Wait……Now! Say something clever……Very good……People laughed……Now, make more eye contact……Okay, the conversation is winding down……Okay……Oh, shit, how do I exit gracefully from this interaction? I have no idea……Help……Okay, okay, I’ll just use my strong voice and act confident……There……I’m walking away now……G-d, I feel like such an idiot….”

For some strange reason, running this script just isn’t fun for me anymore.

My husband and I talked for a long time last night, and he helped me to see that almost all of the commitments I’ve made in the outside world are optional. I don’t have to do them. I made most of these commitments when I was still thinking that I just had to work really hard at the store, or on my OT work, or whatever, and things would get better. Even though I knew that I couldn’t change my neurology, even though I had accepted that I wouldn’t make friends at the store, even though I knew that the OT work might not have any effect at all, I still went into everything with the old idea of progress. It’s hard to shake. In large part, it consists of trying to be the NT that I think the world expects me to be. I know I’ll never get there, but over the course of my life, I’ve tried getting as close to it as inhumanly possible.

At some point in the past six months, it did dawn on me that I might not be the quite the actor I thought I was. But this realization didn’t stop me from trying. I still catch myself working on my big, ongoing, lifetime challenge to see how close I can get to “normal.” I used to wonder whether I’d actually fooled anybody, but you know what? I don’t care anymore. The only way for things to get better is for me to start untangling my true Aspie self from all my ridiculous mega-efforts to be someone I’m not. 

I’ve had an NT impersonator job all my life, and it’s time for me to retire. Fifty years is enough. It really is. I don’t need a pension, and I’m not going on the public dole. I’ve got all kinds of great things I love doing, and the old job is getting in the way.

So, although I love my OT, driving an hour to see her is really out of the question. I’m so exhausted by the intensity of all the sights, sounds, movement, and emotional energy out there in the world that I need to pull back in a major way and have some respect for myself. And I don’t want to work at the store again until I find some way to be there without constantly running my script. Having come to these realizations, I emailed my OT and the people in charge at the store. My OT wrote me back a really lovely, supportive email. I’m pretty sure I’ll get a similar response from the people at work. After all, I have taken care to surround myself with very nice people.

Meanwhile, here I am, living in this strange transitional state of knowing that the old ways won’t work, and wondering what the new ways will look like. I hate transitions, but there you are. I don’t know what the future has in store, but I do know that my marriage, my mothering abilities, and my capacity to be a friend all depend upon being in some kind of harmonious relationship with who I really am.

I’m only beginning to understand how different I am from most people. I’m only beginning to understand that most people do not experience the world with anything remotely approaching the intensity that I do. And I have to respect that. I have to respect the fact that just going outside and seeing all the green leaves on the trees can be a beautiful and overwhelming experience. It’s overwhelming because it’s so damned beautiful.

Perhaps I need to experience the world in small portions. Something like that.

It  feels so good to start over—to get up in the morning and tune into my hyper-aware, hyper-sensitive Aspie nervous system and see what we can do together. Last night, I didn’t sleep well, and when I have things to do in the outside world, I always feel very anxious trying to do them without enough sleep. But this morning, I realized that I didn’t have to go out there. I could be tired, and it would be all right.

The one outside commitment I’m keeping is to my new therapist. First things first. I want to work on accepting who I am, and she seems quite willing to help me. So that’s where I’ll begin. Again.

© 2009 by Rachel Cohen-Rottenberg

13 comments

Aspie Pride: Respecting Our Strengths, Respecting Ourselves

May 28, 2009 Rachel Autism-Literate Therapists, Disabilities, Eye Contact, Making Art, Sensory Processing Disorder (SPD), Sensory Processing Issues, Social Gatherings, Spectrum Pride

I saw my new AS-literate therapist for the first time on Tuesday afternoon. We’re going to have three sessions and then evaluate whether we can work together, but I’m feeling very good about her already. In many ways, seeing her was a very intense experience, and it has sent my thinking in very positive new directions.

The Experience
The therapist is in New Hampshire, about 35-40 minutes from where I live. I found the drive on Tuesday to be very challenging. I was anxious about meeting a new person, and I was desperately hoping that she wouldn’t say something clueless or patronizing about AS. I had sent her a link to my blog so that she’d have some background on where I’m coming from, but still, you never know.

I was also afraid of getting lost, because like many of you, I was born without any discernable sense of direction. I had given myself extra driving time in case I misread the directions she’d emailed to me. Fortunately, at my request, she had taken care to add a lot of detail, so I got to her office with 15 minutes to spare.

Within five minutes of my arrival, the therapist saw me parked outside, came out, introduced herself, and invited me to come in and get the session started early. Of course, on this basis alone, I liked her immediately. How many times does a health professional get your appointment started on time, never mind early? So I started to feel optimistic.

She began the session by saying that she really liked my blog, and that I was doing a great service with it. She was very straightforward and sincere when she said these words, so I had no choice but to believe her.

That was a good start. I began to feel even more optimistic.

Since we hadn’t talked on the phone, she asked me what I wanted from the therapy. I said that I wanted to work on accepting myself just as I am, which includes having the disabilities that come with Asperger’s. At this point, she very gently stepped in and said, “You know, I think of Asperger’s as a different way of thinking and being, not as a disability.”

I know that I should have felt even more optimistic in the face of this statement, but I was determined not to let her sugarcoat my experience. (I don’t think that’s what she was doing, but the fear was there, so I went with it.) I started my shpiel about feeling that on some days, Asperger’s gives me lots of strengths, and that on other days, it’s a really debilitating disability. I described some of my sensory deficits, my difficulties going shopping, cleaning my house, driving, and so forth. I expressed my frustration and the low self-worth that emerges when I’m not able to do basic tasks without feeling cranky, dizzy, and exhausted.

She acknowledged my frustration, and then she said the most amazing thing. “Well,” she said, “it’s true that you can’t go grocery shopping very easily, but on the other hand, how many people who go grocery shopping easily can write the way you do?”

I had to acknowledge that there was truth in what she was saying. Then, when she asked me about what I do out in the world, I talked about working in the thrift store. Once again, I focused on how hard the sensory overload felt, and said that I didn’t feel that I could do much at the store at all. When she heard that, she once again put my Aspie strengths into focus and said, “Even in the short time you’re there, you’re doing a great service at the store, and the staff values it.  How many people can just walk into a place with your kind of focus and start organizing things?”

This type of interaction kept happening over and over. I would mention something I was doing, and then proceed to devalue it by bringing up all the things I couldn’t do. She kept turning my statements around to give me a different perspective. Her respect, and even admiration, for people with Asperger’s was palpable. I finally broke down and said, “You know, I just feel so badly about myself, even in this room with you. I can’t maintain eye contact with you because I need to look at the floor in order to think. I feel like I talk too much and get disoriented and exhausted by it.”

At this point, your average therapist would have given me that benign therapist look. You know the one I mean. It’s that look that says, “There is something deeper here you’re not seeing. I know, because I’ve studied psychology.”

But this therapist said, “It’s perfectly fine that you don’t make a lot of eye contact with me. And if you need to be quiet at different times during our session, that’s fine, too. By the way, is there anything in this office that is visually distracting to you?”

It’s a good thing I was sitting down, because if I’d been standing up, I probably would have fainted. It’s so unusual that anyone asks me that question that at first, I was shocked. But then, I realized that I’d better seize the moment, so I said, ”Yeah, actually, that stuff piled on the bench over there is bothering me because it’s kind of random, and that book over there is bothering me because it’s kind of tilted and the color on the cover hurts my eyes.” She said she’d get that fixed for next time, and that if I felt distracted by the environment in any other session, I should speak up.

Before we finished the session, she talked about how Jung believed that mid-life is an opportunity to truly become ourselves—an opportunity that takes a lot of courage to embrace. At that moment, I felt very grateful to have Asperger’s, because its challenges and its strengths are giving me the impetus I need to find that courage and to be myself.

New Directions
So, I’ve been thinking: What can I do well, and what are my difficulties? Consider the following:

What can I do well? 
I can write in a way that has meaning for me and for other people. I can sing in a strong, clear voice. I can make beautiful art from found objects. I can dig up a whole yard using a shovel, a lot of muscle power, and a ton of sweat. I can plant beautiful flowers, vegetables, and herbs that bring enjoyment to my family and to my neighbors. I can de-clutter my living space and organize my house so that it feels calm and restful. I can do all the dishes and the laundry (although my husband and I compete over the laundry, because we both enjoy it so much). I can be a good listener for Bob and for Ashlynne. I can give them honest, constructive responses to the challenges they face in their own lives. I can focus like there’s no tomorrow. I can get upset with injustices that other people never even notice. I can advocate for my kid when she needs it (although, these days, she’s quite good at advocating for herself). I am highly empathic, hard working, fair minded, honest, trustworthy, and without guile.

What are my difficulties?
Cleaning my house, food shopping, cooking, driving, making small talk, being around a lot of people, and working at a conventional job.

Anybody notice anything?

1. The things I can do well far outnumber the things I can’t.

2. No one can do everything on both lists.

3. The things that I can do well are just as important than the things I can’t. After all, what would I rather do, make small talk while feeling desperate to be understood, or write a blog so that none of us has to feel so alone? And at this point, I don’t need to have a conventional job, so why should I feel so badly about it? I should be happy!

I used to think that all the basic tasks I find so difficult were the most important things. I used to think that all the things that I do well were just self-indulgent hobbies and useless oddities that were helping me pass the time between now and the moment of my death. I kept looking out into the neuro-typical world and feeling “less than” because I couldn’t shop and socialize and get invited to parties, or even get noticed by most people at all.

I now realize that when people ignore me, it’s not because they don’t see me, it’s not because I’m not important, and it’s not because I’m missing a piece. It’s because I’m putting out very intense signals that aren’t the ones they’re expecting. My husband has told me as much. All those many times that I’ve been ignored, or patronized, or laughed at, I thought it meant that there was something wrong with me. Now I realize it means that there is something very right with me. I’m very intense, I’m very focused, I’m very loving, I’m very sensitive, I’m very empathic, and I do not suffer fools graciously. I think that’s all very good. In fact, I think it’s better than very good. I think it’s great.

I’m not like most people, but there is nothing wrong with me. For the first time, I am beginning to feel that I have value. I have my strengths and I have my difficulties, just like everyone else. I don’t have to apologize for the things that are difficult. I just have to assert my strengths and ask for what I need.

So, for example, when I go to work this Monday, I’m going to ask that someone turn off the speaker above my head while I’m working on the jewelry. I’m not going to say that I’m sorry to trouble them, and I’m not going to feel small and scared. I’m just going to say that I’m very sensitive, and that everything comes into my senses at the same volume and with the same intensity, both of which are very high. I’m going to say that listening to the music, hearing people talking, and trying to concentrate on the jewelry is more than I can do at once. In other words, I’m going to ask for the staff’s assistance in making the environment work for me.  

This is who I am. I get to be here, too. I don’t have to pretend to be neuro-typical anymore. I just have to be myself, the way I was made. It’s the most important thing I’ll ever do. And like most important things, it’s also the most difficult.

© 2009 by Rachel Cohen-Rottenberg

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Finding an AS-Literate Therapist

April 23, 2009 Rachel Autism-Literate Therapists, Food, Occupational Therapy, Sensory Processing Disorder (SPD), Sensory Processing Issues

I did it! I found an AS-literate therapist. She’s a colleague of the psychologist who diagnosed me with AS in November. And she’s only a half hour away. So now, in addition to seeing an OT in Massachusetts, I’m going to meet with a therapist in New Hampshire. (Did I mention that I live in Vermont?) Anyway, I have an appointment with her in late May, so we’ll get to sit down, and talk, and see whether we click.

It’s been so important for me to find a therapist who understands AS. I’ve done a lot of psychotherapy over the past 25 years, and it’s done me a world of good, but around the time I was diagnosed with AS, I began to feel very frustrated with it. The underlying assumption of psychotherapy is unending progress. You just have to work on your issues, and the sky’s the limit. In fact, my last therapist told me that with a little more work, I was going to “soar.” It didn’t make me feel good. I didn’t know why then, but I understand now. I don’t need to soar. I need to learn how to walk through the world being exactly who I am.

One of the many things that I love about my OT is that she doesn’t make me any promises. She doesn’t say I’m going to “soar,” or learn to filter out background noise, or even go grocery shopping once a week. She doesn’t promise anything. She just gives me tools and says, “Let’s try this and see how it works for you. Everyone is different.” What a relief! It allows me to accept myself exactly where I am, knowing full well that I might make some progress, or none at all. As long as there are practical things that I can do, I’ll do them and see how they work. I like that approach very much.

So it’s a little odd to think about going to a therapist again. A great deal of my present work consists of undoing all the psychotherapeutic assumptions I’ve lived by for 25 years. The main assumption to overcome is that all of my problems are emotional and psychological, rather than neurological and physical. Undoing that assumption is very hard work, but I’m getting a little better at it. Consider the following:

1. How I handle my anger. I have lots of reasons to be angry. My lousy childhood. My estrangement from my original family. Global warming. Autism Speaks. I could go on, but you get the idea. For much of my life, I’ve seen my anger as a psychological problem to be solved. I’ve needed to “work through” my anger at my parents. I’ve needed to learn to “channel” my anger at the ills of the world into productive work. And that’s fine. I’ve worked hard at all that, and I’ve had a lot of success at it, too.

But now, I’m realizing that a great deal of my anger is my nervous system trying like crazy to get my attention. Yesterday at the co-op, in the midst of all the sensory overload, I could feel my anger rising, and I realized that my nervous system was yelling at me: “Get me out of here! Get me out of here! There are too many people! They’re all talking at once! The large-size gloves are driving me nuts! Someone is banging on metal! There’s too much music! Please, take me home! Now!” As my OT would say, my anger is just my nervous system defending itself.

What an incredible piece of information. I don’t have to take my anger out on myself. I just have to listen to my anger as a signal from my nervous system—a signal that I need to respect. The respecting part is the hard part, because I’ve devoted most of my life to overriding my neurological signals. I’ve gotten quite adept at it. It’s become a deeply-ingrained habit, and habits are difficult to break. Difficult, but by no means impossible.

2. Why I overeat at night. I can hardly express what a failure I think I am around food. I soothe myself with it. (Isn’t that just awful? I mean, it’s right up there with global warming and Autism Speaks, isn’t it?) Up until the past few months, I figured I was soothing myself emotionally because of trauma issues, loss, and insecurity. But I’ve worked on these issues forever, and I still use food the same way.

Now I realize that my nervous system is in an uproar at night. An absolute uproar. After a full day of wending my way through the sensory world, I am tired and my nervous system is going nuts. How wonderful to talk with my OT, and to realize that overeating at night is not about a lack of willpower or commitment or strength or character. It’s just my poor 50-year-old jangly Aspie nervous system saying, “Help. Please. Help. I’m hanging from the chandelier. I know you don’t have a chandelier. It’s just a figure of speech. Help.”

So why see a therapist at all? After all, my OT is giving me the information I need.

I need some emotional support, too. I need some support for feeling my otherness, for accepting my aloneness, for guiding my daughter into young adulthood, for figuring out what to do here in mid-life when everything I’ve planned for, and dreamt about, and worked so hard for is done. The therapist I’ll be meeting specializes in helping women through mid-life transitions, so if anyone can help me get comfortable with becoming a crazy old cat lady, it will be someone like her.

Of course, I’ll need to get some cats. I’ll put them on my list. But where do they go in the sequence? At the beginning, before I see the therapist? Or as a reward somewhere down the road? I don’t know. It’s all so confusing. But I’ll get there. Wherever it is. That’s for sure.

© 2009 by Rachel Cohen-Rottenberg

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