Journeys with Autism

I’m in the midst of blowing another emotional gasket over the way that my stepdaughter treats Bob and me. The pressure has been building in me for a while. I’ve been noticing that I simply don’t want to hear Bob talk about his daughter at all. I’m too angry at her. He wrote her a letter last summer, telling her that she needs to do some work, show us some respect, and deal with her issues, but nothing has changed. She has not even begun the process.

Now, it’s nine months later, and it’s Passover, and Bob’s daughter wasn’t at the table with her brother and stepsister. While Bob has been bemoaning her absence, I’ve found myself digging in my heels deeper and deeper over something she has repeatedly said to Bob. And I quote:

“Rachel has taken away everything in your life that was important to you.”

Yes, she has really said that. More than once. How do I even begin to resolve my feelings about anyone who would say something like that?

The most difficult part is that Bob keeps asking me, “What would it take for my daughter to be welcome in our home again?” I’ve finally realized that it’s an unfair question. I have no idea what it would take. I have given my stepdaughter more love, more trust, and more second chances than I ever should have, and at this point, I don’t know whether I can ever trust her again. Over the course of the past eight years, we have had some good periods, but after every good period comes a backlash that’s worse than the one before.

Her alternately minimizing and denying my autism is bad enough. That’s just plain mind-bending ignorance. But repeatedly telling her father that I’ve ruined his life? That’s malicious. I can’t think of any other word for it. Every time she says it, Bob says, “No, that’s not true. Rachel has given me back my life.”

Does it make a dent? No.

Now, I know that I did not cause this problem, and that I cannot solve it. I know that Bob’s daughter feels guilty over how she devalued her mother when she was alive, and that she wasn’t there to help care for her when she was dying, so how can she show me respect or accept my disability? It brings up too much guilt and pain. So, instead of dealing with her guilt and pain, she flings it all at me, and in the process, she’s built an impenetrable wall between us. It’s intensely painful to Bob that she’s doing this, because when it comes down to it, she’s building pretty decent walls between the two of them as well.

Of course, when she needs something, she feels free to call. In fact, she won’t make any major decision without consulting her father. And yet, oddly enough, she shows no respect for the major decisions he’s made for his life.

It’s mind-boggling. I could almost deal with this from a 20 year old. But she’s nearly 29, and it’s all getting very old. Her mother will be gone nine years next month. I respect my stepdaughter’s grief, but life moves on, and that ain’t my fault.

I don’t know what to do anymore. I have difficulties with trust in the best of times. I tend to trust people too much, and I tend to take them at their word too much, and then I get hurt. It’s happened so much with my stepdaughter that I don’t know that I’ve got another round left in me. For Bob’s sake, I feel like I should have another round left in me, but I’m exhausted.

Life is feeling so very brief these days. The older I get, the more keenly I feel my own mortality. I don’t know how much more life I’ll get to have. Maybe it will be a long life, but I don’t take that for granted. Will my stepdaughter ever come around while her father and I are still here? Doesn’t she realize how much time is passing? Doesn’t she realize how painful this is to her father, who has been there for her at every stage of her life, supporting her, cheering her on, making sure she feels loved? Doesn’t she realize that he won’t be around forever, and that she’s only creating more guilt and regret for herself in the days ahead?

I just don’t get it. I don’t think I ever really will.

© 2010 by Rachel Cohen-Rottenberg

This week, my 93-year-old father-in-law was joined by his 90-year-old sister in sending out love and support to Bob and to me. With her permission, I’m sharing the email that Bob’s aunt Charlotte sent to us. She lives in California and is the person whose 90th birthday party Bob missed in August.

Here is her email:

“Dear Bob and Rachel,

How I wish I lived closer to you.  I have all this warmth – so many  
hugs – and I think you could both use some right about now. I’m really  
sorry both of you missed my party. It was an interesting gathering of  
many parts of my life and you two really belonged there.

But I do understand. Reading Rachel’s blog – and some of the others as  
well – gave me new insight into the world in which people with autism  
live. I had no idea. Having learned a bit about it does help me  
understand why Bob was unable to leave at this juncture. I admire your  
plans to find other resources so that Rachel can be more comfortable  
not only if Bob is away but so that her great fear that he might not  
return and she would be without support can also be ameliorated.

For someone who had been as independent as Rachel was, this must be a  
great blow, but to give a name to the changes that have taken place  
must be a great comfort and I’m glad you have a therapist with whom  
you can work things out. I am still so very independent but the day  
will come when I can no longer drive and if THAT terrifies me so, I  
can have just a glimpse of how the world must look to Rachel.

What more to say? I love you both and wish I were nearby to do  
SOMETHING.
OOOXXXAunt Charlotte”

Since we received this message, some of the burdens I’ve been carrying have been lifted from my soul. It’s amazing what a little kindness can do, especially coming from someone who could have reacted angrily to Bob’s absence. When Bob called her to say that he wasn’t coming to California, she said, “That’s all right. The next time you visit, I’ll have more time to spend with you than would be possible at a big party.”

And now, she’s sent just the right message at just the right time. How amazing is that?

© 2009 by Rachel Cohen-Rottenberg

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!

© 2009 by Rachel Cohen-Rottenberg

I’ve written in the past about feeling invisible when Bob and I run into people who talk to him and ignore me. I know that this experience is not unusual for people on the spectrum, even though I don’t completely comprehend it. I know, for example, that we put out unexpected social signals (of which we’re not consciously aware) and that neuro-typical people find them confusing. I’m also aware that sometimes, because we’re not modulating the conversation with signals that others recognize, we are perceived as being socially absent.

What I can’t comprehend is how people can be so rude. So we put out weird social signals—who cares? We’re still human beings. I don’t get how people can ignore someone who clearly wants to be part of the conversation. On a purely visceral level, it offends me to the core.

Every since I was a kid, I’ve understood the necessity of inclusiveness. Perhaps I perceived my difference early on and saw the potential for being left out. Or maybe I just couldn’t stand the idea of anyone being marginalized. But it’s not just me. I’ve watched my neuro-typical daughter understand the importance of inclusiveness the same way she understands the importance of eating and sleeping. It’s not that she befriends everyone she meets, but unless people are rude or obnoxious, she will find common ground and treat them fairly. It’s not just upbringing. It’s who she is.

Unfortunately, the world is made up of people who don’t seem to get it, so I’m going through another round of feeling invisible. It began when I actually read some of the emails that Bob has gotten about my autism. Bob had told me enough about them to send me into paroxysms of grief over the weekend, but when I actually saw them, I realized that they were even worse than I’d imagined. They nearly sent me through the roof—not simply because people seemed to be working under a whole host of misconceptions, but also because they were questioning our choices and commenting on our relationship.

It was clear that we had to re-draw the sacred circle around our marriage and let people know that they’d crossed a line. So, on Sunday, Bob wrote and emailed a letter to several family members, basically setting limits while explaining how autism really works and how it affects us. He explicitly said that I feel very alone, and he ended the letter with the following statement:

“I appreciate all of your concern for me, for how I’m doing. I really do.
But please know that my part is the easier one: I am not struggling to
make sense of the neurological reality of autism. Rachel has the hard
work here. She’s doing it, and she needs your compassion and support and
empathy. If it’s hard on me, and it is, please imagine how hard it must
be for her!”

By the next morning, I’d received a very sensitive and apologetic response from one of Bob’s family members, which was truly amazing. Since then, all the other responses have been directed to Bob. Apparently, my email address has joined me in the land of invisibility. How else am I to explain its absence from the To: line? I’m sure there is a completely rational explanation, but I’m autistic and don’t really understand the mysteries of the universe as others do.

Bob forwarded one of the responses to me, and before he could forward any others, I asked him to stop. I feel unbearably sad when people direct their responses to Bob and talk about me in the third person. It’s the equivalent of standing in the grocery store and having someone direct all of the conversation to Bob when I’m standing right next to him. I’m not sure what part of “she needs your compassion and support and empathy” wasn’t clear to people, but obviously, there’s still a disconnect.

I know that many autistic people are more sensitive than your average person. Slights that another person might not even perceive cut us to the core. It’s hard for me to understand that other people don’t feel things as acutely as I do, and so it’s difficult for me when people don’t respond in the ways I need them to. But I have to step away from these kinds of conversations. Bob and I have had them for years, about so many people. Given the way my soul cries out for understanding and empathy, I’m not sure quite how to protect myself against hoping, every time, that people will just get it, but I’ve got to face facts here. I must detach my energy from people who are well intentioned but essentially blind to how I feel.

Margot Nelles, founder of the Asperger’s Society of Ontario, describes the experience of Asperger’s in the following way:

“It’s like being dropped in the middle of rural China without a guidebook or a language book,
and you go from home to home and feel that somehow you have insulted everyone.”

I’ve felt all my life that somehow, despite all my best intentions, I’ve unintentionally insulted people on a regular basis. How else can I explain being left out of so many conversations? Is my difference an affront to people? Is it my honesty? Is it my need to be understood? Or is it simply my sensitivity to all things sensory and emotional that leads people to work around me rather than directly with me? I don’t know, and I suppose, at this point, that I don’t need to know. I just need to look at empirical reality and make some course corrections about where to put my attention, my hope, and my energy.

At moments like this one, my husband says, “You just have to accept the way that people are.” But I can’t accept it. I’ll never accept it, because I know how much better it could be. At the same time, though, in my own life, I have to stop hoping for things to be different. I must stop hoping that maybe this time, if Bob and I say just the right words, with just the right tone, at just the right moment, everything will change. I have to acknowledge the stark reality that as much as I struggle with the acute sensory sensitivities that come with autism, I suffer most from other people’s responses to me, and that I can’t do a thing about it except to place my attention elsewhere and move in a different direction.

© 2009 by Rachel Cohen-Rottenberg

I feel like my life just bottomed out.

I’m not sure how it started. It seems to have coincided with a letter that Bob wrote to his daughter. I won’t go into details on it. It was a good, honest letter that spoke with love to her about her ongoing resistance to our marriage and to the choices that Bob has made for his life. In the course of reading it, I found out some more wonderful things that my stepdaughter has to say about me these days: that my autism is  a “choice” I’m making, and that I’m using it to “hide.”

Like I don’t have enough self-esteem problems without hearing bullsh*t like that.

And then, there is the email my husband sent to all the people he was going to see in California. He got back a couple of supportive responses. Of course, because nothing can ever be easy, he also got a very judgmental response from a family member telling him that he’s dealing with the situation all wrong and that he’s disappointing people because of it.

I’ve been counseled not to listen to this kind of thing, but I really have to. I need to listen to how people are reacting because it’s hard on Bob, and he needs to be able to get support from me. The problem is that once I’m done listening and giving him support, I’ve got one more piece of fear and self-loathing to deal with. He knows it, and he tries to tell me that other people’s reactions aren’t about me. In my brain, I know it’s true, but my self-esteem meter ends up falling by several degrees every single time.

Ironically, what gets to me more than anything, is that none of this is about me. I wish it were. I wish it were personal, but it’s not. All of these responses, whether for good or for ill, are directed to Bob and not to me. The people who are supportive and the people who are disappointed are all asking Bob whether he’s taking care of himself in the face of my autism. I am glad that people care about him but, hey, excuse me everyone, I’m the one going through hell with the autism here. Why do these people think he had to cancel his trip? Anybody care to chime in and ask how I’m doing? I mean, people can be disappointed over whatever they want. Everyone gets to be human, and everyone gets their own feelings, but where’s the perspective here? I’m pretty goddamned disappointed with how disabled I am. Would anyone like to address this small fact? Didn’t think so.

The reason all this energy is directed to Bob and not to me is clear. He’s writing to his friends and his family. They aren’t my friends or my family. I have no family, and I still haven’t figured out how to have friends—not really. I have people who consider themselves my friends, but I still don’t know how to be with them and make space for myself. I feel like I’m always tagging along behind them. I haven’t the merest clue about how to talk to another human being, besides Bob, and not go into overload. How can I possibly connect with anyone face-to-face when my mind can’t keep up with the words coming in and can’t figure out how to come up with words in response? This is high-functioning autism? Why, because I only freak out in the privacy of my own home? I feel like I might as well stop talking altogether, wear my ear protection, and check out of anything that looks familiar to me, because everything familiar is just one more reminder of how completely screwed I am.

Last night, all of these feelings flooded over into waves of grief so intense that I could barely move. I was crying inconsolably for hours. Then, I woke up this morning and cried some more.  I’m crying because it feels like God has played one giant series of very cruel jokes on me—that is, in those moments when I believe in God at all. Right now, I hate God with a passion. How could God have put me in this ridiculous body with this ridiculous neurology, put me into a family that abused and rejected me, given me gifts I can’t possibly use, given me a heart that I can’t put into action, and made me this silly little girl who just wants to love people and be loved in return and have everything be okay? Why is it never okay? Why did God give me so much hope when I was a girl? Why? Just to take it all away?

When I married Bob, all I really wanted was to have our little family—my kid and his kids. But now, his stepdaughter has nothing to do with me (despite all my attempts over the years to reach out and support her), his daughter absolutely hates me (despite all my attempts over the years to reach out and support her), and my daughter is so intimidated by Bob’s daughter that she hides in her room while she’s here. My daughter is anything but a fainting lily, so that’s really saying something. Bob’s son and I get along well, but because he lives in the house we used to live in, it’s very hard for me to go there and see him. Too many memories.

So much for my dream of a family.

As if all this weren’t enough, I realized last night that when my daughter goes to college, I won’t be able to visit her. She wants to go to school in California and traveling for me is impossible. So, I’ll see my daughter when she comes back to visit me, but I won’t get to see her life in action. Right now, I’m getting a taste of how it will be, because she’s been at camp for two weeks and she’s called me once. Even last year, she called me more, but this year, she’s too grown up for that. She’s having her life with her friends. I understand that. But it hurts. A lot.

Last night, when we sat down at our Shabbos table, I told Bob that I no longer want to chant any of the prayers we’ve chanted on Shabbos together since the day we met. I don’t believe in them anymore. I don’t believe in God anymore. The God who would play this many cruel jokes on me is no God at all. (And for anyone tempted to proselytize me right now, please don’t.)

While I was sitting at the table, I couldn’t even look at anything. Every single thing on the table seemed to mock me, because I remember buying it with optimism, with the hope of a happy life with friends, family, and community. Another joke. So I just sat there, unable to move. I told my husband I was sorry that I couldn’t chant the prayers anymore, and he said, “That’s all right. I’m going to light the candles tonight to honor our marriage and our commitment to each other. That’s what they symbolize tonight.” Of course, then I only cried more.

Ultimately, I just got tired out and ended up having some food before I fell asleep. I woke up in the middle of the night in a very weird mood. At first it was kind of nice, because it was emptied of everything. Then, I remembered my predicament, and the grief hit me again. Bob woke up and held me. He told me that it was okay to hate God, because it was better than hating myself, which is what I’ve been doing for as long as I can remember. He said that God can take it, but that I can’t. Maybe it’s true. I don’t know.

© 2009 by Rachel Cohen-Rottenberg

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.

© 2009 by Rachel Cohen-Rottenberg

Bob and I have an appointment to see the doctor on Friday about my blood work and EKG results. When I say “Bob and I have an appointment,” I mean that Bob will be physically present, and that I will be present in the form of a letter that he will bring with him.

Going to the appointment alone was Bob’s idea. He said “It’s always stressful for you to go to the doctor, and this time, you’re dealing with the prospect of discussing tests that you don’t want to have. Since we’ve talked out all the options, why don’t I go to the doctor, discuss any additional test results, and then bring them home to you? Meanwhile, you can write a letter stating your thoughts, and I’ll give it to the doctor.”

Isn’t he a great husband? I think so, too.

So, I wrote and signed a statement giving the doctor permission to talk to Bob about anything related to my health and medical history. Then, I wrote the letter to my doctor. I want to share it on my blog because it provides an example of the way in which writing empowers me by giving me an alternative to sitting in an office, overwhelmed and unable to express myself properly.

Disclaimer: I am not a medical professional or a medical authority, and I am not advocating that anyone follow the path that I am following. What works for me won’t necessarily work for anyone else.

Here is the letter. Some of the information has come from previous posts, so parts of the letter will probably sound familiar to some of you. (I’ve left out my doctor’s name to protect her privacy.)

“Dear Doctor:

A word of explanation: I’m writing this letter because I find it much easier to say things in writing than in person. Because I’m autistic, conversation with even one other person is difficult. I cannot read nonverbal cues, so I can’t use the same kinds of “shortcuts” that neuro-typical people use to understand the meanings behind the words. My brain has to work very, very hard on words alone, and it gets tired very, very easily. After just a few minutes, I am “full,” and I can’t integrate any more information.

I want to let you know my thoughts about the ST depression on my EKG. I’ve done some research as to possible causes. While the ST depression could signal heart disease, I have no risk factors. I exercise regularly and have done so for all of my adult life. I don’t drink alcohol or coffee. I haven’t smoked a cigarette in thirty years. I have never been overweight. My blood pressure is always in the low-to-normal range. I have taken care to eat healthy food since my early 20s, and my diet presently consists of fruit, vegetables, chicken, fish, soy products, tahini, almond butter, whole grains, and very little salt. I have allergies and sensitivities to a wide range of foods, including dairy products, gluten, refined sugar, and hazelnuts. In addition to removing these foods from my diet, I have also removed the processed, high-fat, and high-salt foods that contribute to heart disease.

Other possible causes of an ST depression are:

1) An electrolyte imbalance
I don’t know yet whether an electrolyte problem will show up on the blood work you ordered, but I wouldn’t be surprised if it did. I take a multivitamin, but I do not take any supplements containing potassium, magnesium, or calcium.

2) Positional vertigo
I have a condition called severe gravitational insecurity, a problem with my vestibular system similar to positional vertigo.

3) Stress during the EKG itself
I have appreciated your sensitivity to my sensory needs and your willingness to learn how autism affects me. However, going to any public place is very stressful on my body, and coming to your office is no different. Part of being autistic is feeling that I am always in the range of an unforeseen sensory assault, whether auditory, visual, tactile, or olfactory. For me, auditory overload is a particularly significant problem. Because I have no ability to filter or prioritize auditory stimuli, I have started to use a noise-reduction headset, which has given me my first experience of “background noise.”

Unfortunately, during the EKG, I had no hearing protection, and the woman who administered the test talked continually. She talked mainly about her autistic son, a subject that would have interested me were I not about to have an EKG. When people talk and talk, without understanding that I have a great deal of difficulty processing speech, my nervous system response is extreme. I feel fearful and overstimulated to the point of panic. During my EKG, I was in a state of acute sensory overload. These kinds of responses have been shown to cause ST depressions in otherwise healthy people.

And of course, for some people, ST depressions are a normal part of an EKG, with no ill effects at all.

I understand that it’s your responsibility to suggest an echocardiogram and a cardiac stress test, so I want you understand the impact of these tests on my body. An echocardiogram may seem like a simple test to most people, but for me, going to the hospital, waiting in a room with other people, wearing a gown, having gel put on my body, and having a complete stranger do an ultrasound would put me out of commission for several days afterward. I don’t simply mean that I’d be fatigued. I’d be completely exhausted. I’d have bladder pain, neck soreness, stomach upset, nausea, migraine, and sleep disturbance. I would lose my appetite and my ability to focus. As you can imagine, a 3-5 hour cardiac stress test would amplify these responses by several orders of magnitude. I would be very sick and completely nonfunctional for a week or more.

Tasks that are simple to other people, like going to the grocery store or to the post office, are very difficult for me. Medical tests in a hospital are beyond difficult; they border on the impossible. Unless there is a clear medical need to go through them, I don’t see anything to be gained by having a procedure that is going to make me sick. Therefore, I am going to decline the echocardiogram and the cardiac stress test. I understand there is some risk involved in doing so, but there is also great risk to my well-being if I take the tests at all.

Regarding other medical tests, we’ve talked about scheduling a yearly physical, mammogram, and colonoscopy for the same month each year. While logically this plan makes sense, physically it would be a disaster. One test a month is all I can do, and I cannot have several scheduled in advance. I need to have one test and then recover before making the next appointment. I have started keeping a list of the dates of my tests so that I can see when I am due to have them again.

Because I’m having difficulty seeing clearly out of my glasses, my next medical visit is to the ophthalmologist in September. After that, I will consider having a mammogram, though the level of neurological stress involved is comparable to what would result from an echocardiogram. I definitely do not want to have a colonoscopy each year; my nervous system would have a very bad reaction to it, and I can’t go through it.

It might seem that I am making the wrong trade-offs here. It might seem that I am unwilling to go through a short period of “discomfort” in the service of finding out whether I have a treatable illness. However, please know that in the 50 years that I lived with undiagnosed autism, I drove myself mercilessly against my neurology in ways that have irreparably harmed me. At present, and for the foreseeable future, my most important priorities are to spare my nervous system undue stress and to improve my everyday quality of life—even if that life might be shortened for lack of the proper test at the proper time. I have given this matter a great deal of thought, and I know that this course is the best one for me.

All the best to you,

Rachel Cohen-Rottenberg”

© 2009 by Rachel Cohen-Rottenberg

Several months ago, my husband made plans for a ten-day trip to California. The first weekend was to be a reunion of old friends and family, followed by a trip to Yosemite with his daughter, and ending with a big celebration of his aunt’s 90th birthday. Since I don’t like flying, I don’t do groups well, and I was absent on the day they passed out the “adventure” gene, my husband was going to make the trip alone.

This plan was nothing new. Throughout our relationship, Bob has made at least one ten-day trip to California each year. As for me, I have always had a very hard time when he goes away for so long. Before I knew that I was autistic, I’d always thought I had lots of “issues” to resolve, and that I needed to “work on myself,” so that I, too, might be able to make these trips and act like a “normal” person. Even when it became clear that I wasn’t really all that interested in going, I wanted to work on handling my emotions better—both for my own peace of mind and for Bob’s ability to enjoy a guilt-free trip. So, I worked on not crying inconsolably every time he left, on getting together with friends, and on otherwise distracting myself from the fear, trembling, and massive anxiety I felt at being left on my own for ten days.

This year, everything changed. In the early part of the summer, I began to actively resist the idea of Bob going to California at all. At this point in my life, I don’t feel inclined to just “suck it up” and “work on my issues” when I have a strong feeling about something. I figure that I’m an intelligent, kind, good-hearted person and that if I’m feeling resistance, fear, sadness, or any other emotion, I should maybe, um, respect it. It’s never all that easy, because I have all kinds of conflicting emotions, which lead to all kinds of conflicting desires. As far as Bob’s trips go, I always find myself caught in the same dilemma: I want Bob to enjoy travelling, and I want him to stay here with me.

We’ve been negotiating on this trip for a couple of months. At one point, we discussed the idea of his going for a shorter period of time. A shorter trip seemed like a great solution. It seemed logical, it seemed manageable, and it seemed abundantly fair. At least, it looked that way in my mind, that part of me that likes to work out rational solutions without considering their impact on the rest of my being. In this case, while my mind was saying, “That sounds okay,” everything else in me was saying, “No, no, no. No compromise will work. Forget it.” It was a full-out, visceral feeling that I couldn’t shake. Nor could I shake the feeling of guilt at being so inflexible.

After much struggle, I finally realized why I was feeling so strongly about Bob staying here. He takes care of so many things that I can no longer do that it feels really frightening to have him be away for so long. Of course, with some advanced planning, we might have taken care of the logistical details, but it really wasn’t just the trip to California. It’s the fact that if Bob should leave the planet before I do, I have absolutely no support network set up to take care of all the things that he does. What if he went to California and didn’t come back? Where would I be?

I finally began to understand why I’d always felt like a basket case when Bob took a long trip.  Even before I knew I was autistic, even when I was still gamely trying to do everything that “normal” people do, it was clear that I did not function well when Bob was away. The autism diagnosis only brought the reality of mid-life autistic burnout into the light of day.

To make a long story short, Bob decided to cancel his trip to California this year. We’ve decided that, apart from his trips to see his dad in New York, he won’t take another long trip until we get a support strategy figured out and make sure that it works. I so much want Bob to be able to travel and have a great time with his family and friends, but we’re only at the beginning of dealing with my autism. Right now, I feel as though I’m out on the open seas without a life raft, and I can’t have my partner taking a ten-day journey to anywhere until we get a survival plan in place.

Given my love for lists, I took on the task of making a list of all the things that I need a support network to help me do:

1. Housecleaning. (This problem is solved. We’ve hired a great person who comes in once a week to clean our house.)
2.  Driving my daughter where she needs to go. (This problem will take care of itself fairly soon. When my daughter gets her driver’s license, she will also get my car.)
3. Food shopping. (My new headset might allow me to go food shopping on my own. I plan to try it in the near future, and I dearly hope that it works.)
4. Cooking meals.
5. Running outdoor errands.
6. Going to doctor, therapy, or hospital appointments.
7. Making telephone calls.
8. Advocating for myself with the health insurance company, the doctor, the cable repair person, and the rest of humanity.
9. Keeping track of the finances for our household and for a small non-profit that we run.
10. Spending time with friends.

As I looked over this list, I had some significant realizations:

1. Bob needs a respite from being my sole support person. At this point, he’s not complaining, but when he’s sick with a cold, I feel like hell asking him to do the things I can’t do. Setting up a support network will allow him to get a break when he needs one, and I won’t feel so inclined toward a meltdown when what I want to do conflicts with what I can do.

2. I supported myself for thirty years, including seven years as the sole breadwinner when my daughter was small. I kept up with every penny, wrote every check, and worked out every budget. Since Bob and I have been married, he has taken on these tasks, and it has been a great relief for me.

However, as a result, I have found myself in the dark about our income, our expenses, and all the bills that come into this house. So, yesterday, Bob and I sat down and he showed me every last bill, every last expense, every last account, and every last penny of income. I made a list of everything he showed me. Now that everything is down on paper, the whole process of keeping the house going feels more manageable to me. I know that I could take care of the finances myself if I had to. In addition, I was able to organize our financial papers so that I can find the information when I need it.

From this point on, I plan to stay more involved in our financial life. Doing so has already felt very empowering.

3. One of my all-time greatest fears is growing old alone and being put into a hospital or nursing home. Given that I have no idea how well I’ll be functioning as I age, it makes sense that I find someone who can advocate for me if I outlive Bob—someone who will have power of attorney with my best interests at heart. I can think of several friends I would entrust with the job, so I’m going to consult a lawyer about all the issues involved.

4. As much as I hesitate to enter any bureaucratic process, I am considering applying for Social Security disability. I know people who have done so (and succeeded), and the key was having a knowledgeable, supportive person involved in the process from beginning to end. Even in the best situation, the process is very onerous, but if I’m going to get assistance with basic tasks from someone other than Bob, I’d like to help pay for it.

5. I have some wonderful friends, but I avoid spending time with them because I know how easily I get overloaded. My therapist suggested that I talk to my friends about it. Since I feel completely ill-equipped to begin such a conversation, I’m going to explore the issue further with him. If I have friends that I know I can see, it will help with my fears of being left alone.

And how does my husband feel about cancelling his trip to California? Sad, disappointed, but not angry. He is starting to face the fact that the autism is real and pervasive. He’s starting to see the situation as it really is, not as we once dreamed it would be. We’ve both been crying a lot, but we’re crying together, and that makes all the difference.

© 2009 by Rachel Cohen-Rottenberg

When I first got my Asperger’s diagnosis, I was so relieved. I was able to look back over the course of my life, from the distant past to recent events, and see the common thread linking everything. For awhile, it felt great. I love when things make sense, and the Asperger’s diagnosis made beautiful and astonishing sense.

Then, after a month or so, I got done walking on air and began feeling a lot of grief for the things I couldn’t change, for the person I couldn’t become, and for the end of believing that I could do anything I wanted to do. Since that time, I’ve been in a sort of holding pattern, and I’ve felt like I was doing okay. But now, I feel like the bottom is falling out.

On the outside, nothing has changed. I am physically healthy, my marriage is great, my kid is happy, I can write no matter how fried my head feels, and anyone looking in from the outside would probably assume that I’m doing just fine. The problem is, because I don’t go out much anymore, very few people can actually see me from the outside. I’m feeling an absolute aversion to going out into the world. Some days, I can take walks on quiet streets, so long as I’m a) wearing my Sonic Defender earplugs, b) wearing sunglasses, and c) keeping my eyes fixed on the ground whenever I see a person anywhere near me. I have to control what I look at and what I listen to, as much as I can. But most days, I don’t want to go anywhere.

One by one, I’m watching all the dreams I had for my life fall away. The funny thing is, I thought I’d already let go of so many. What could be left? I just had a few small dreams I was holding onto—going to the movies with my husband, having dinner out, getting dressed up and working at the store. Last year at this time, Bob and I went to the movies on Saturday nights, and I loved getting dressed up for work. I was even hoping to find a part-time job. But now, just a year later, even those small things are gone. I look at all the clothes that I bought last summer at the store, and I want to cry. They belong to an era in which I naively thought I’d be a strong, confident part of the world. That era seems very far away.

It seems like anything I want to do “out there” isn’t possible. Even the people from the school for autistic kids haven’t gotten back in touch with me, and it’s been over two weeks. Maybe they read my blog and decided they didn’t like me? Or maybe, I’m just supposed to let go of the world “out there” and stand face to face with the unmistakeably autistic person I am.

I have very little energy for NT emulation. I know how much it burns me out. I go into the world and put on my face, get overwhelmed and anxious, and come home unable to locate myself. Somewhere between being housebound and being in the world, there’s a huge rift and I fall in. Every time.

I love the natural world, and I love people, and I find the things that people do very interesting, and sometimes very beautiful. But it’s all overwhelming to my senses. When I go into the world, and I take in all the sense impressions and emotional energy, I end up feeling like I’ve been hit by a train.

It used to be that I was just afraid of people with bad energy, but I can see those types coming from a mile away. It’s not hard for me to spot them, and it’s not hard for me to walk away from them. It’s the really friendly people that give me the difficulty now. I want to be around them, I want to talk with them, and I want to be one of them, and yet, I simply can’t. I went to the thrift store with Bob last week, just to see how it felt. Everyone was so welcoming and so glad to see me, and I loved seeing them, too. But after a half hour of being in the store, I was disoriented and exhausted. It took me most of the next two days to recover.

Then, on Sunday, I had an emotional blow-out, and spent much of the day crying over feeling so isolated and alone. On Monday, Bob left for New York for a couple of days, and I was still crying. On Tuesday, I stayed in all day. By Wednesday, I was sitting at the breakfast table, handflapping and rocking. In the past, when I’d get overloaded, I’d have to think about what to do—lie under my weighted blankets, work out, sing, do some hard work. Now, I’m just stimming, early and often.

From the point of view of the autistic person I am, this kind of stimming is progress. In fact, I love it. It feels natural. It feels like some sort of ancient healing ritual. It feels like I’ve lived my whole life unable to speak my native language, and now I can.

But from the point of view of the highly accomplished and assertive person I used to be, it feels like I’ve been the hapless victim of a major fraud. How can I possibly have lived on this planet for 50 years without knowing that I’m autistic? I can see living here for one year, or two years, or even ten years without anybody noticing, but 50 years? How is it that even possible? Why did I have to burn out before the truth revealed itself? And now that I know, what’s going to become of me?

It’s really hitting me hard that there is no going back. I cannot fool myself into thinking that if I get dressed up, go out, and work at the store that somehow, I’m approaching the vicinity of the Land of Normal, where everything will be okay. When Bob is here, I do all right, because he’s easy to be with and he loves me. When my daughter is here, all the better, because I love seeing her and hearing the things she shares about her life. But when I’m alone, without either of them, my level of fear goes off the charts. I think, what if I were left completely alone? What if this were the next 20, or 30, or 40 years of my life? It’s not the food shopping and the driving that worries me. It’s the being alone. Forever.

I know that everyone has these kinds of fears. But neuro-typical people have many more opportunities to go out and get a break from the aloneness. I don’t have those opportunities. I can’t make plans and hope that they’ll work, because I keep trying to make ever more humble and sensible plans, and they still don’t work.

Right now, I am so totalled by all these realizations that Bob is coming very close to canceling his trip to California in August. My daughter will be at camp during the time that he would be away, and the idea of a week and a half at home alone feels impossible. I used to handle his extended trips by making plans with friends, but it didn’t really help. In fact, in some ways, I felt more isolated. I loved seeing my friends, but when I came home, I’d feel twice as alone as I had before. Even Bob’s short trips to New York are terribly difficult.

So I’m in a major crisis. It’s not a life-threatening crisis, but it’s a crisis nonetheless. I want Bob to stay here as much as possible. I don’t have a problem with his going to New York to see his dad, because his dad needs him and they need to be together. Even thought it’s difficult, I can support it. But I also need a lot of support for myself right now, and while I’m still trying to find ways to get the support outside of my house, I need Bob to be nearby. If his daughter wants to see him in August, perhaps she can come east and they can hang out in the house she grew up in. Bob feels like that might be a good solution. He’s not ready to make a final decision at the moment, but I think that’s where it’s going.

For my part, I’m starting to make some contact with a couple of local agencies that work with developmentally disabled people. It’s useless to pretend I have it all together when the whole damned facade is crumbling. I hope I can find some support locally and feel less alone in my everyday life.

You are all an amazing lifeline.

© 2009 by Rachel Cohen-Rottenberg

This morning, I ran across another amazing piece by the brilliant Amanda Baggs called Help! I Seem to be Getting More Autistic! It’s a long, informative piece about all the possible reasons that we can lose abilities as we get older. The section called Burnout especially spoke to me, setting off a cascade of feelings and associations that helped me understand why I can’t do many of the tasks and activities I once did.

Amanda explains that burnout begins because we are working at a level of energy that non-autistic people would use only in emergencies:

“Most people have a level to which they are capable of functioning without burnout, a level to which they are capable of functioning for emergency purposes only, and a level to which they simply cannot function. In autistic people in current societies, that first level is much narrower. Simply functioning at a minimally acceptable level to non-autistic people or for survival, can push us into the zone that in a non-autistic person would be reserved for emergencies. Prolonged functioning in emergency mode can result in loss of skills and burnout.”

Until my diagnosis, I’d been functioning at emergency level for 50 years. Amazing, isn’t it? I should get a plaque, or a trophy, or maybe even a write-up in the local paper. Can you see the headline?

LOCAL AUTISTIC WOMAN BURNS OUT AFTER 50 YEARS OF EMERGENCY FUNCTIONING
“So THAT’s why she’s so quiet,” says neighbor

In the article, I would explain why my short trip to the hardware store this afternoon was followed by several hours alone in my loft, writing my little heart out. After all, if you had to walk five entire minutes to the hardware store, buy four sponges, a spray bottle, super glue, and some scotch tape, and then walk five more minutes back, you’d be exhausted, too. If you were me. Or anyone else who has tried to be “normal” for as long as I have.

But back to Amanda’s piece. In the same section, she sums up, well, pretty much my whole life to this point:

“The danger here may be obvious: It may be the people most capable of passing for normal, the most obvious “success stories” in the eyes of non-autistic people (some of whom became so adept at passing that they were never considered autistic in the first place), who are the most likely to burn out the hardest and suddenly need to either act in very conspicuously autistic ways or die.”

Given all the plates I’ve kept spinning in my lifelong quest to be neuro-typical, having a simple choice between 1) being conspicuously autistic or 2) dying—well, it’s one hell of a relief, let me tell you. I’ll take the conspicuously autistic woman behind door number 1, please. Why has no one told me about her before? She’s quite wonderful!

The problem, of course, is how do you get support services when you’ve made a seemingly phenomenal success of life? Amanda writes:

“Sometimes this kind of burnout is what leads adults to seek diagnosis and services. Unfortunately, many service systems that would otherwise support people in their own homes, cater only to people who were diagnosed in childhood, and will look at someone with a very good neurotypical-looking track record of jobs, marriages, and children with suspicion. They need to be made more aware of this possibility, because there’s a high chance that an adult in this situation could end up jobless, homeless, institutionalized, misdiagnosed, given inappropriate medical treatment, or dead.”

This problem is why I have decided not to apply for disability. I don’t think that anyone at the Social Security office could begin to understand what a difficult time I’ve having. I can’t blame them, because I’m just beginning to understand what a difficult time I’m having. Fortunately, I have Bob and his family to help me, so I don’t have my back up against the same financial wall that so many others do.

After I read through Amanda’s piece, I went downstairs to the kitchen, and I told my husband that I feel even more adamant about getting people to help with basic tasks. We’ve hired a housecleaner who is starting this Friday (yay!), but we need to continue reconfiguring our lives to deal with the reality that 1) I’m autistic and 2) he will be able to do less for me, not more, as he gets older.

From the time I was first diagnosed, my husband has used a great image to describe what has happened to my life. He said that I’m like the Road Runner in the old cartoon. The Road Runner would run right off a cliff and be perfectly fine—until he looked down. Then, he’d crash. Every time I say to Bob, “What has happened to my life? Why was I able to do so much more before?” he gives me the same answer: “You looked down.”

I looked down and saw that I’d been running off a cliff for some time. I just didn’t know it. By trying to take care of everything myself and not asking for any help, I was working way past my capacity. When I got my diagnosis, it was like finding myself in mid-air. I had to face the inescapable reality that gravity was going to win.

As Bob and I talked about the image of falling, I suddenly understood the source of my worst nightmares. Since childhood, I have had two related, recurring dreams.

In one version, I am on the ground watching a plane or a bus or a car, with people in it, zigzagging across the sky. The vehicle is out of control, and I know it’s going to crash, with all those people in it. I am terrified for the people who are going to die, and as the vehicle starts plunging to earth, I know that if I don’t wake up, I will also die. I am always able to wake up just before the vehicle hits the ground.

In the other (and even more terrifying) version, I have climbed to the top of a very high place using several ladders or flights of stairs. The problem is that the ladders or the stairs are on the outside of the structure, and I suddenly realize, to my unspeakable horror, that I cannot get down. Going back down the ladders or the stairs is out of the question. I am very high up, the stairs or the ladders are nearly perpendicular to the ground, and the sight of the earth below is dizzying. I know that if I try to get back down, I will fall and die. There is no way to get down gracefully. I stand there wondering how I could possibly have climbed all the way up without realizing that I wouldn’t be able to get back down. And then, I’m so scared that I wake myself up.

Both kinds of dreams are about an autistic person trying desperately to be a super-competent neuro-typical person. All my life, I had climbed the ladder of success, and I’d spent my life convincing people that I had it all together. And all that time, behind the scenes, I was terrified. In fact, I can barely remember a moment of my earlier life in which I wasn’t anxious or afraid about something. Now I know why. 

I was always afraid of falling off the ladder of success. I was always afraid of a “fall from grace.” I was always afraid that someday, I wouldn’t be able to “do it all” anymore. I was afraid that someday, I’d have to be who I really am.

That’s a fall from grace? What a laugh! Everyone should be so lucky. It’s been more like a fall into grace. Here I’ve fallen from this high ladder I climbed, and look where I’ve landed: I have a husband who loves me as I am, a kid who loves me as I am, friends who love me as I am, an online community that gives me a phenomenal amount of support and understanding, and a local community in which I feel safe coming out as an autistic person. So what’s not to like?

Sometimes, I wonder: If there had been an Asperger’s diagnosis when I was younger, would I rather have been diagnosed at 5, or 12, or 18 years of age than at 50? After all, I would have had many more supports and a much more realistic view of myself. But each time I ask the question, the answer is no. If I’d been diagnosed earlier, I wouldn’t be where I am right now. I can’t regret the past, because it’s brought all the people I love into my life.

Tomorrow, my husband is going with me to the thrift store. We’re going to walk around, watch how I’m feeling, and consider how I might make a place for myself there. When I told my husband that I was going to the shop tomorrow, just to get a feel for the place again, I didn’t even have to ask him to come with me. He just knew I needed him to be there.

While my life has not been the easiest life, it hasn’t been the hardest, either. In fact, it’s become a very interesting adventure. I hope it continues so.

© 2009 by Rachel Cohen-Rottenberg