Journeys with Autism

Now that the CDC has officially revised its figures concerning the number of autistic children in the US, I’ve read more than my usual share of maddening articles on the subject.

For those of you who very wisely protect your sanity by staying away from as many news sources as possible, the new data shows that 1% of American children are autistic—which, by no small coincidence, mirrors a recent study showing that 1% of adults in the UK are autistic. Of course, that 1% figure appearing in two different studies must be a coincidence. It’s only my tragically broken autistic mind that impels me to point out that our adult autistic friends across the pond were once little autistic children across the pond, and that when they were little autistic children, they made up 1% of the human beings who had not yet become adults. It’s amazing, I think, and a testimony to the insular thinking of the average American, that those 1 in 100 adults in the UK are not considered the hapless victims of a tragic epidemic that took place a generation ago, but that those 1 in 100 American children today are proof positive that a terrible disease is sweeping our country.

To read most of what passes for journalism lately, you’d think that autism was almost completely unknown in my generation. And perhaps it was. After all, I’m autistic, and no one knew. Wait a minute! Could that be it? Is it possible that so many of us were left undiagnosed? Is it possible that we were simply dumped into the absurd categories of ”Model Student,” “Lazy Daydreamer,” and “Behavioral Nightmare”? Is it possible that no one knew why some of us were sitting quietly in school, staring vacantly, or politely pretending to attend to the lesson, while others of us were jumping out of our chairs every few minutes and disrupting everything?

No one, it seems, wants to believe that we were once autistic children. No one, it seems, wants to admit that so many of us have spent so much of our lives struggling along, not understanding why we can’t quite connect with most other human beings on the planet. They do not want to think about it. When you raise the issue, they dismiss us by saying that our autism is not like the autism of today. Oh, no. Our autism, they tell us, is “mild autism.” It makes us a little eccentric and socially awkward. In fact, they tell us, someday soon, we’ll be given a whole other trendy diagnosis, and then they won’t even have to think about us at all.

To such people, I can only say: There is no such thing as mild autism. It doesn’t exist. Saying that someone is mildly autistic is like saying that someone is mildly pregnant or mildly brilliant. Some words just don’t take well to modifiers. I know that people like to distinguish between “high-functioning” and “low-functioning” autism, but those categories have become meaningless to me. The only distinction I can make anymore is between the following two types of autism:

Category 1 Autism: The kind that some people like to think they understand. We verbal folks who can pass for neuro-typical have Category 1 Autism.

Category 2 Autism: The kind that most people have decided that they will never understand. Our nonverbal friends, who will never pass for neuro-typical, have Category 2 Autism.

Today, I had the great good fortune to be an autistic person from Category 1, holding the hand of an autistic person from Category 2, and taking a long walk through my neighborhood. It was a very interesting experience. The differences between the two of us were apparent to outside observers, I’m sure, but I was most struck by the similarities between us:

a) She does patterns by moving her fingers. I wasn’t able to figure out her patterns from holding her hand, but they were definitely there.
b) Her eyes take in everything.
c) She rocks to self regulate.
d) She orders things in her own patterns when no one else even notices that they’re out of place.
e) She touches things randomly when she walks (cars, trash cans, what-have-you) in order to ground herself.
f) She stops and stares at things that others don’t consider important.
g) She doesn’t look at people who are coming down the street toward her. (I avert my gaze, while she closes her eyes.)
h) She likes to hold a familiar item in her hand and grasp it firmly.

Most people undoubtedly perceived me as “semi-normal” and “aware.” (If it weren’t for my headset, I’d look totally normal, but I’m bored with that, so who cares?) I’m also certain that most people saw my friend as “abnormal” and “out of it.” But that’s just perception. Most people cannot feel how flooded we are by the sensory world. They cannot know how acute and how challenging our sensitivities are. They also cannot know that we both laugh, cry, and live with people who love us for who we are. They cannot know that my Category 1 Autism is more difficult than they will ever understand, and that her Category 2 Autism is not the disaster they think it is.

They can’t know, because they can only see us from the outside. They can listen and learn, but that takes a willingness to believe that there are more ways of seeing than they’ve ever suspected. I’m not sure that most people can do it. I’m grateful for the ones who try.

© 2009 by Rachel Cohen-Rottenberg

For anyone who hasn’t heard about the latest insult from Autism Speaks, see Stat Mama’s excellent review of their current piece of money-making, fear-mongering, bigoted, misleading, negative garbage video. For those of you who, like me, are easily provoked into day-long internal diatribes that go nowhere, give you a headache, and keep you up at night fuming upset, you might want to skip the video. Stat Mama’s review has enough quoted text to convince you that if you’ve been avoiding Autism Speaks videos like the plague, you should continue to do so.

Lucky for us, there are people on the Internet who have incredible blogs about their beautiful autistic kids. One of my new favorites is Mother of Shrek, written by the mom of C, a 21-year-old, nonverbal, autistic young man. In the course of reading this blog, I discovered a jewel. In addition to Mother of Shrek, C’s mom publishes a blog called Faces of Autism, on which she posts photos of autistic children and adults that her readers have sent in. On the right side of the page, there are even photographs of artwork by some of the folks in the pictures. The site is a labor of love, and it makes my heart sing every time I stop by.

Yesterday, I sent in a photo of myself, along with a picture of one of my mobiles. I’m pretty sure that I’m the oldest person on the site now, but I wouldn’t mind any of you one-upping me. C’s mom is happy to use only first names or even first initials to protect your privacy, and you can write a little blurb to go with the photo, too.

The positive images on Faces of Autism are a welcome relief from the work of Autism Speaks. I hope you’ll take a look.

© 2009 by Rachel Cohen-Rottenberg

I know I’ve written lots of posts with all kinds of ingenious solutions to the various sensory, emotional, social, spiritual, and logistical challenges of my autistic life. And yes, I’m a very creative person when it comes to thinking this stuff up, and I always live in hope that this time (as opposed to the innumerable other times), my wonderfully ingenious and creative solution will take care of whatever the problem du jour happens to be.

Well, my friends, I’m terribly sorry to have to inform you, but after 51 years of alternating between innocent hopefulness and complete desperation, it’s time to get off the wheel. I am who I am, and my life is my life. Some things will never change. Ready for a list? Of course you are!

1. I am invisible to the average person.

Yes, it’s true. I am just under 5’1″. I weigh almost 110 pounds. I have a head. I have a torso. I have two arms, two legs, ten fingers, and ten toes. I have mass, weight, and occasionally, momentum. I am a carbon-based life form. And yet, most people cannot see me, even when I am standing right in front of them.

Don’t ask me to explain it. I have lots of creative ideas for why it happens—I put out weird social signals, blah blah blah—but those ideas just don’t cut it when you consider the fact that I am actually an incarnate being. 

A case in point: Last week, I needed to get a ride to a 6:00 pm appointment. Because Bob was not going to be home, I called a friend a few days before and asked whether he could give me a lift. He was so happy I’d asked! I was so happy I’d asked! He said, “Sure! I’ve been wondering what I could do to help.” So, we planned for him to pick me up at 5:30 on Monday evening.

The appointed time came, and I sat on the porch to wait. It was 5:30. Then, it was 5:35. Then, it was 5:40. Uh oh. Had he forgotten?

I called. He picked up. He said, “Oh, my God! I forgot. I remembered this morning. Then, I forgot!”

To his credit, he got right in the car and came over. He also apologized profusely, and because he is a very nice person, I said lots of things to help him feel better, like “Hey, that’s okay, I have to practically tack a list to my forehead to remember anything!” But inside me, in my heart that broke one more time, I had that old familiar feeling of being invisible. After all, my friend had made lots of arrangements to see my husband for dinner, and he’d never forgotten any of them. This arrangement was the only one we’d ever made, just him and me, and he forgot.

Again, I have no explanation. I appear to phase in and out of people’s memories in the same way that I phase in and out of their fields of vision. It’s one of the great mysteries of creation. Why I’m not included in the Guinness Book of World Records or Ripley’s Believe It or Not! is beyond my comprehension.

2. Most people think I’m strange.

I know, I know. It seems impossible, but it’s true. Inside, I feel pretty goddamned normal, and even a little boring, but most of the world considers me an odd, autistic duck.

Quack.

3. I cannot connect with most people.

I try. I do. Like crazy. Why else do you hear all of those words spilling out of my mouth? Yeah, I know, they don’t help me connect. They tend to make people smile and back away slowly.

And yeah, I know, I could shut the hell up, but shutting the hell up doesn’t help either. I shut the hell up, and then I get to hear about everyone else’s life without getting a word in edgewise. It’s exhausting. And it pisses me off no end.

Now, bear in mind that I’ve read about the path of moderation. I’ve spent a lot of time trying to find the middle ground. I’ve watched so-called normal people operate, and I’ve tried to emulate them. My husband is particularly good on the moderation thing, and for many years, I tried to mimic his rhythm, his words, his affect. Guess what? Are you sitting down?

It didn’t work.

4. People tell me what a marvelous, spiritually evolved, loving, peaceful, giving, friendly, hard-working, and intelligent person I am, but no one asks me to lunch.

How is that possible? Does my spiritual radiance overpower them? I have no idea.

5. People ask my husband what they can do to help, but they don’t ask me.

Isn’t that odd? Oh, yeah, right. I’m invisible. You can’t look into my eyes and ask what you can do for me—I mean, not without looking like you’ve lost it.

Of course, you really shouldn’t be asking anyone what you can do to help an invisible person anyway—unless you are committed to the idea of making the person visible. But then again, if you were committed to that idea, you wouldn’t ask my husband how to help. You’d just pick up the phone and call me, or send me an email, or walk over and engage me in a conversation.

6. People tell me that they want to get together, but oftentimes, when I suggest a time, they don’t respond, and I can’t understand why.

Because he is a wonderful person and likes to think the best of people, my husband tries to explain these things. The problem is that every explanation comes down to “That’s just how it is.”

Yeah, I know that’s how it is. That’s why I brought it up in the first place.

7. When I write blog posts and don’t get much of a response, I feel sad and disappointed, and then I kick myself in the ass for being such a baby.

Come on, you other bloggers. Admit it. You KNOW you feel that way. Sometimes.

8. I try really, really hard to accept having only online friends, but I still crave a 3-D friend, big time.

9. I am afraid to reach out to people, because I’ve gotten disappointed so many times, but then I get pissed off when no one calls.

Yeah, okay, I admit it. I want someone to look at me and say, “Oh, my. That person is in distress. I must help. I will ask her how to help. And then, I will actually do at least one thing she suggests.”

You may say I’m a dreamer, but I’m not the only one…

10. I actually have moments in which I believe that if I just explain all of these things to your average human being, he or she will understand.

…I hope someday you will join us, and the world will live as one.

I’d like to accept this state of affairs. I really, really would. I’ve had enough great ideas blow up in my face that my body and soul feel like they’re trying desperately to wave a white flag and surrender. They want to negotiate a truce. They’ll take whatever terms I give them, so long as I stop coming up with Great Ideas That Will Solve Everything. They’re tired of the disappointment. They’re tired of watching my autistic mind spin in circles, trying desperately to find a way out of being an autistic mind.

And I’d really like a truce. I would. I just haven’t written enough hopeful letters to people who can’t understand, or cried enough bitter tears over how lonely I feel.

But I’m getting there. I can’t stay on the wheel forever.

© 2009 by Rachel Cohen-Rottenberg

As you might have gathered from my last post, I’ve been feeling a lot of internal pressure to explain myself to the outside world.

Pressure is not necessarily a bad thing, so long as it’s ultimately empowering. When I email someone at the school for the Deaf about volunteering, taking a class, or getting advice on how to navigate the hearing world, my drive to explain my sensitivities is all for the good. I’m advocating for myself. I’m making sure that people understand what I can do, what I cannot do, and what I need in order to keep myself healthy. Yes, it can be quite exhausting, and it can also make me feel very vulnerable, but that’s often the cost of self-advocacy, and I accept it.

But then there’s the pressure that doesn’t result in empowerment. This kind of pressure comes from my need to be understood for its own sake. Nothing is wrong with my need for others to understand me. It’s basic to being a human being. Why else do I write this blog, if not to be understood? Why else do autistic people read it, if not to feel comforted that someone else understands?

However, a significant problem arises when I go about my everyday life and expect that if I use enough words, everyone will understand. How is a stranger on the street going to understand the experience of being flooded by everyday sounds? How can even my husband know what that feels like? Unless they share the same experience, they can’t really know. They will always be understanding it from the outside in, rather than from the inside out. The best I can hope for is that others believe what I’m saying, that they respect what I’m saying, and that they support me.

So, I’ve been thinking a lot about my drive for self-advocacy on the one hand, and my insistence on tilting at windmills, on the other. Tilting at windmills is out of the question right now; I need every bit of energy I can get just to function well. But the drive for self-advocacy is itself taking a lot out of me, and I’ve been wondering why. What I’ve come to realize is that being autistic is essentially the experience of living in paradox, and that this experience makes self-advocacy very, very difficult for me. I’ll list (of course!) the paradoxes that have been occurring to me lately. Feel free to add ones I haven’t thought of.

1. I have acutely sensitive hearing—so acute that I have to use ear protection to get as close to being deaf as possible. So, can I hear or not? When someone asks me, I don’t have a ready answer.  What does it mean to hear, anyway? Does it just have to do with sound waves entering my brain? Or is it about whether those sound waves get filtered, prioritized, and understood? If the former, then yes, I can hear. If the latter, then no, I can’t hear.

2. I am capable of talking a blue streak, but because I am unable to follow the spoken word for very long or respond to it effectively, I find myself lapsing more and more into silence. So, can I speak or not? If speaking means being able to form words and string them together, then yes, I can speak. If speaking means being consistently able to keep up with a conversation so as to understand the meaning of the speaker and to respond in a purposeful way, then no, I can’t speak. 

3. I deeply want to be part of a community, but being autistic means that wherever I am, I am usually alone.

4. I deeply want to help people, but being around people is often impossible.

5. When I write, I know whether I’m making sense, but when I speak, I often have no idea whether I’m saying anything in a coherent manner.

6. I have difficulty sequencing tasks in time, but I have no problem ordering the things of space or perceiving visual patterns.

7. I have retained a kind of childlike innocence, and yet I feel old, pessimistic, and deeply sad when I look at the suffering of the world.

8. I do not read nonverbal cues intuitively, and yet when I walk into a room full of people, I can feel what everyone is feeling without anyone explicitly telling me.

9. I do not believe that I have a disorder, and yet I am unable to do things that most people take for granted.

10. I engage people as though what they say is what they mean, even though I have ample life experience to lead me to the opposite conclusion.

When it comes down to it, the problem of self-advocacy may simply be a problem of language. For autistic people, what it means to see, hear, smell, touch, taste, move through space, relate to other people, form friendships, and be successful is often fundamentally different from what it means to our more typical friends. When others lack this understanding, they can (and usually do) consider autism to be inferior to other modes of experience. I know that I am not inferior to other people, and yet I also know that when I say that I am autistic, many people will either a) assume that I am missing the essential pieces that make one human or b) consider me some sort of amazing anomaly because of my capacity for love and sensitivity. I know that when I block sound and refuse to speak (despite having superb hearing and a capacity to ramble on endlessly), many people will think I am simply being stubborn or perverse. And so, in order to give people an understanding of my needs and my experience, I can’t simply use words like autism, hear, or speak and let their normative, neuro-typical meanings stand. I feel compelled to explain what I mean as an autistic person.

These acts of translation are tiring, and yet, they feel like such important work that I don’t quite know how to manage them. The best I can do, at present, is to choose carefully the time and place in which I engage in translation at all. If I am advocating for myself, fine. I’ll translate and do my best (within the limits of my neurology) to keep it as concise as possible. But if I’m simply trying to enlighten someone who would just as soon go home for dinner, I’m wasting my time.

I must make these distinctions. If I don’t, I won’t have any energy left to do the things that I enjoy.

© 2009 by Rachel Cohen-Rottenberg

I’ve been going through an especially hard time lately. I’ve been feeling very dispirited, sad, angry, abandoned, and lost. I have days in which I cry virtually all day long. And then, I have days like today, in which I feel more grounded and more focused. Perhaps it’s simply that I got a full night’s sleep last night—the first full night’s sleep I’ve gotten in months. For the past few months, I’ve been waking up at 3:45 am, and then I have trouble falling asleep again. It doesn’t matter what time I go to bed; I wake up at the same time. If I manage to fall asleep again, I have disturbing dreams that are so vivid that I don’t even realize I’m dreaming until I wake up.

A friend of mine asked whether I’m having an extended meltdown—an interesting question. I don’t think I’m having a meltdown, at least not in the usual sense. If what is happening to me is a meltdown, it’s the combined result of all the years of driving myself, all the years of finding no kindness or understanding, all the years of trying so desperately to be what I cannot be, all the years of hating myself for not being what I cannot be. If I’m having a meltdown, it’s the result of all the stressors I’ve battled against throughout my life.

But really, what I’m going through feels more like extended grieving. And perhaps that’s all a meltdown really is: an explosion of grief over the pain of overload, the pain of being alone, the pain of being invisible, the pain of living in a world that is hard to bear.

There are many layers to this kind of grief, and the one I’m focusing on now is the grief of realizing that being autistic means being a member of a hugely misunderstood and maligned minority. I used to think I’d already traversed that territory by virtue of being a Jew, but the experience I’m having now is quite different from anything I’ve encountered in the past. True, I have experienced anti-Semitism, up close and personal, and I’ve met more than my fair share of people who think that they understand Jews because they’ve read the Bible or had a Jewish friend once. I still see plenty of anti-Semitism out there in the world, but for the most part, it doesn’t feel personal. Most people who know I’m Jewish don’t see me as a caricature. They don’t rely on stereotypes when thinking about me. Until recently, I lived my life as a very visible Jew—first wearing a kippah and tzitzis everywhere I went, and then later, wearing a headscarf and long skirts. If someone were going to engage in anti-Semitic craziness, I would have known about it by now. It just hasn’t happened. 

The experience of being autistic feels very different. Now that my autism diagnosis is on the table, and I’m making changes to integrate it into the life of my family, I feel like a walking stereotype. People in Bob’s family who have known me for years say things that are completely at odds with their experience of me—that is, when they’re not ignoring me altogether. All that has changed is that I have a diagnosis of autism. That’s all. When people got upset about Bob cancelling his trip, he got responses like the following:

• Does Rachel have as much empathy for you as you have for her?
• Often, it’s the caretaker who suffers more than the patient.
• You should put Rachel first, but not at the exclusion of your own children.
• If Rachel could do everything on her own before, why can’t she now?

If instead of receiving an Asperger’s diagnosis last November, I’d had a stroke and needed to relearn everything—how to go grocery shopping, how to be out in the world without becoming disoriented, how to speak without exhausting myself, how to reconstruct my self-image, how to reconfigure my life so that it works—I sincerely doubt that anyone would have questioned my ability to empathize, accused me of taking up too much of my husband’s time, or challenged me about whether I had actually lost the ability to do simple tasks. In fact, people would have been asking about how they could help.

However, I have a diagnosis of autism, and that makes me suspect. It means that instead of writing and offering supportive words, my relatives pull back and offer almost no direct support. Apart from the email I received from one of Bob’s cousins, the great shining exception to this pattern is my 93-year-old father-in-law. He is very interested in what I write on my blog and talks to me on the phone with great appreciation and affection. Perhaps it’s because we share so much in common. We were once both very high-functioning people out there in the world, seemingly in control of things, and making a Great Success Of It All. Now, he is very frail and can’t possibly do what he was able to do even five years ago. He has had to find new ways to see himself and to enjoy the world. Despite differences in age and neurology, we are going through parallel experiences, and somehow, we’ve been able to extend ourselves to each other.

Within the family, though, he is the exception. When I consider the range of responses I’ve gotten, from silence to anger to suspicion, I find myself realizing that I have now joined the ranks of the invisible, the misunderstood, the maligned, and the burdensome. This time, it’s personal. This time, it’s in the family. This time, despite the fact that I used to ride up front, I’ve been told to go to the back of the bus and stay there. What else does it mean when someone considers me a patient rather than a wife? What else does it mean when, instead of showing compassion for what I’ve lost, someone accuses me of choosing to become disabled? What else does it mean when people direct their words to Bob and not to me, as though talking to me is suddenly an uncomfortable (and therefore impossible) task? It all signals an unwillingness to encounter me as I really am and to show me the respect due to any human being. It means that I have second-class status. It means that I am expected to justify myself at every turn, to reassure people that I will not make them uncomfortable, and to let them know how sorry I am for what a burden I have placed on their shoulders.

Of course, I categorically reject all of this nonsense. I will not sit in the back of the bus, and if anyone expects me to, I will not negotiate. I will not justify myself. I will not explain myself. I will not apologize for myself. I will just get off the bus and walk, in my own direction, and at my own pace. Is it lonely? Hell, yes. But, as Frederick Douglass wrote:

I prefer to be true to myself, even at the hazard of incurring the ridicule of others, rather than to be false, and to incur my own abhorrence. 

© 2009 by Rachel Cohen-Rottenberg

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

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

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

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

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

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

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

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

© 2009 by Rachel Cohen-Rottenberg

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

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

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

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

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

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

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

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

Oops.

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

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

I think so. I hope so.

© 2009 by Rachel Cohen-Rottenberg

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

© 2009 by Rachel Cohen-Rottenberg

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

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

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

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

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

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

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

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

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

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

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

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

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

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

© 2009 by Rachel Cohen-Rottenberg