Journeys with Autism

I’m feeling very depressed. I was very “up” after my trip to New York City, and I seem to be in a slide now. I’m very teary and feeling very isolated.

My daughter is in two plays at school, her very first ones, and I won’t be able to go. It will be crowded and noisy before and after, and I will get seriously overloaded just being there. So, I talked to her, and she seemed fine with it. I offered her support around the play, like helping her practice her lines. She suggested that I contact her principal and arrange to get a DVD of the performances, which I’ve done. But I feel really sad about what I can’t do.

Then, yesterday, my ASL tutor was supposed to come over, but she forgot. We had changed the day from Monday to Tuesday this week, because she had a teachers’ meeting on Monday. So, since the schedule had changed, she got involved in other things and our session slipped her mind. I know that it wasn’t personal. I know that. It’s just that in order to see her—in order to see anyone—I basically have to orient my entire day around pacing myself, not doing too much, conserving my energy, and getting ready to interact. When she didn’t show up at 4:30, I was like a little kid, looking out the window every 10 minutes, wondering where she was. It was like my whole day was wasted. She sent me a really apologetic note this morning, and I’m not angry at her. I’m just sad.

I’ve begun feeling that perhaps I need to find a part-time job, just to have a routine and a context outside of myself. I contacted a counselor at VocRehab Vermont, a Vermont state agency that helps put disabled people to work.  The counselor’s name is Will. He’s the Deaf counselor I emailed several months ago regarding strategies for navigating the hearing world. I’ve got an appointment to meet with him next Friday. Here’s the email I sent him this morning:

Hi Will,

Next Friday would be fine. Please send directions to your office. It would also help me if we could communicate in a quiet room. If there is too much background noise, I won’t be able to hear your interpreter’s voice or think clearly.

Here is a short list of my disabilities/challenges:

Asperger’s Syndrome (a form of autism)
Sensory Processing Disorder (of the sensory over-responsivity type, mainly affecting moving visuals and sound)
Mild dyspraxia with fine motor tasks, moderate dyspraxia with gross motor tasks (Dyspraxia is a difficulty in sequencing novel tasks.)
PTSD, anxiety, and depression (all managed by medication)

And here is a list of what I’m good at:

Focusing on the task at hand
Organizing just about anything
Discerning and creating patterns
Doing strenuous physical work
Writing and editing
Creating art
Being honest and direct

I’d like to find work in the non-profit, social-service sector. Most of my employment has been in front of computers in corporate environments, and I don’t want to work in front of a computer or go back to the business world again.

All the best,
Rachel

I don’t know what he’ll be able to help me do. I’m seesawing between my fear that he won’t think I’m really disabled, and my fear that he’ll think I’m too disabled to work at all.

I seriously need to get some support for being out in the world again. I don’t know what I’m suited to do anymore. My level of confidence is at an all-time low, and no matter how many times I tell myself that I’m a good, intelligent person, it doesn’t seem to matter. I just want to cry.

© 2010 by Rachel Cohen-Rottenberg

I went to New York City with Bob for three days last week, and I made a new friend. I know you already know one another (fairly well, in fact), but you’ve never been formally introduced. Kindly forgive the social faux pas, which I will now graciously remedy:

Blog readers, meet My Eccentricity. My Eccentricity, meet my blog readers. My Eccentricity has been around for awhile (as long as I can remember, in fact), but we’ve only recently become close friends. It’s amazing what a trip to New York City will do for you.

And how did I happen to end up in New York City for three days when I frequently quail at the prospect of going grocery shopping in our quaint little New England backwater? It was love. Of course! Read on.

The Incentive: I was tired of being away from Bob for three days every other week. He was tired of being away from me for three days every other week. Spending time with his dad is an imperative for Bob, so the idea of cutting back on these visits never occurred to either of us. The only way to get more time together was for me to get in the car and go to New York City.

The Drive to New York City: It had been about a year and a half since Bob and I had made the four-hour drive to New York together, and I had missed those times. It’s always been great to go for a long drive and have time to talk, joke, and just be together. So, although the drive was completely overstimulating to my poor Aspie nervous system, I made it to the hotel without getting a migraine. The fact that we took the Merritt Parkway, on which no trucks are allowed, went a long way toward keeping my stress at a reasonable level.

The Hotel: The room was nice, the employees were friendly, and best of all, I didn’t leave the place from the moment we checked in until the moment we checked out. Now, it may seem that going to Manhattan and staying indoors was a waste of time, but I assure you, it was not. The sensory minefield of the drive was sufficient for a first outing, thank you, so I decided to make the best of my time at the hotel. I finished incorporating all the review comments into my book, I caught up on my ASL homework, and I made great strides on a sweater I’m knitting for Bob. Plus, the hotel had an awesome fitness room, and I was the only person in it for over two hours. I actually found a way to have solitude in New York City! I should write a book.

And did I mention that Tuesday was our seventh wedding anniversary? It was! So, we ordered in dinner from room service, chose a movie to watch, and…that’s as much as I’m going to say.

The Impact of the World at Large: During the time that we were in New York, the people of Massachusetts made a terribly asinine an ill-advised decision and decided to honor the memory of Ted Kennedy by electing a man who ran on a platform of derailing healthcare reform in the Senate. And what was worse: Every time I went onto the Comcast website to retrieve my email, I had to see a headline about it. Arghh. So, although I knew that I couldn’t cure the insanity overturn the will of the people of Massachusetts, I could do a couple of things to make myself feel better: a) go on a news fast and b) install a desktop email client so that I never have to use Comcast webmail again EVER. I did both. More on how I dealt with the healthcare debacle later on.

The Drive Back to Vermont: After three days, we were very ready to go home. So, while Bob walked to the parking garage to get the car, I ensconced myself on a sofa in the hotel lobby—a sofa that was so big that when I sat all the way back, my feet dangled over the edge of the cushions. I felt like a little kid in a room full of grownups—kind of how I feel all the time, except that this time, I felt very cute. The lobby also got noisy, so it was a relief to get in the car and head back to our quiet lives in Vermont. We left in sunlight and arrived home just as it was getting dark.

My Healthcare Reform Rant: By the time we got home, I was a wee bit very much on the overstimulated side. I was talking a blue streak, bouncing off the walls, unpacking like it was the last thing I’d ever do, and feeling really, really happy and energetic for the first time in a long time. I hadn’t been depressed exactly, but protecting myself from the possibility of overload had left me feeling isolated, and the trip to New York had made me feel like part of the world again. I finally realized (duh) that I don’t have to conform to anything (duh) except the laws of wherever I happen to be (duh), and that I can indulge my eccentricity any old way I please (duh), especially (duh) in the comfort of my own home.

So, because I was royally pissed off by the whole disaster in Massachusetts, I decided to expend some of my rather impressive store of nervous energy by indulging in the following rant:

“What the HELL were people thinking? How can they NOT know how badly this country needs healthcare reform? Are they crazy? What the hell happened?

Oh, I know. They let children vote in Massachusetts. Children. Well, actually, people of legal age with the mental acuity and social consciousness of children.

But wait. That’s an insult to little kids. In fact, I can’t compare these people to anyone, because they’re being so mind-numbingly ridiculous that any comparison to any other group of people would be unfair. I mean, how do you describe people who think that if they get sick, their insurance company is going to cover the costs? And not raise their premiums? Hahahahahahahaha! What planet are these people on?

And how the HELL did Ted Kennedy’s Senate seat end up in the hands of a person whose only aim in life (apart from looking perpetually young) is to derail healthcare reform? I mean, do people have ANY respect for Ted Kennedy’s legacy, for the way he supported the working person, for the passion he felt about healthcare reform? HELLO? ANYONE? Holy shit. I hope they issue an alert for the area around Arlington National Cemetery, because right now, Ted Kennedy is SPINNING in his grave at such a high velocity that his burial place is sure to become the epicenter of a MASSIVE EARTHQUAKE. Maybe then, all those folks in Congress will WAKE UP to the need for universal health care.

But wait! They already have universal health care. Paid for by the US government! Oh. My. God. It’s socialized healthcare. For Republicans. Can the hypocrisy get any worse?

Yes, it can. The Democrats in Massachusetts can blame everyone and everything for their defeat, but last time I looked, Martha Coakley, the freakin’ attorney general of the state, never even ran a freakin’ campaign. What was she THINKING? That the ghost of Ted Kennedy was going to anoint her the Senator from Massachusetts?

Martha, honey. It doesn’t work like that. DUH!! How can you be the attorney general of the state and NOT KNOW THAT???”

I felt better.

The Day After: I went to work at the thrift store. I was friendly. I made conversation. I extended myself. I brought home a quilt to repair. I was still pretty buzzed.

The Day After That: Bob and I discussed how much fun I am when I’m feeling energetic and inspired. And why people with autism so often get diagnosed as bi-polar. And how I really am fine the way I am, however I’m feeling. And that I don’t need to ask the world’s permission to be myself.

And Now? No crash and burn. At all. Just some tiredness and a sense of relaxation. Amazing, eh?

That’s what happens when I go out into the world and stop worrying about what people think of me.

© 2010 by Rachel Cohen-Rottenberg

The first time I heard the term disabilism, I winced and rolled my eyes. It’s not that I’m against the use of “-ism”s to describe bigotry. There’s enough bigotry in the world to justify a whole dictionary full of “-ism”s. My problem was more basic: I didn’t believe that disabilism existed. After all, who hates disabled people?

Duh.

Because I live in a culture that teaches fear and loathing of difference, I’ve imbibed all the poison the society has to offer—racism, sexism, homophobia, classism, misogyny, anti-Semitism, you name it. Knowing that I’ve internalized all of this hatred and fear, I’ve spent the better part of my adult life trying to root out as much as I can, secure in the knowledge that I will never fully succeed.

Until I had to deal with the fact that I am a disabled person, it had never occurred to me that I had any kind of bigotry against disabled people at all. In fact, I have a very vivid memory of the day in Berkeley that a young man in a wheelchair called me over and asked me to drain his urine bag into the street. I was happy to do it, and he seemed to have no self-consciousness about it at all. Perhaps he sensed my innocence and knew that I would be nice. I don’t know. All I know is that it’s one of my best memories.

But why would I remember that moment? Well, it made me feel good about myself. It made me feel helpful. It made me feel compassionate. Okay. Are any of those feelings a problem? It depends on what lies beneath them. For me, they were based on a subtext of “Oh, this poor man has to actually ask a stranger to empty his urine bag. On a public street.” The fact that he was gracious, self-respecting, and without shame does not take away from the fact that I thought of him with pity, and I that I felt lucky that I wasn’t him.

If you asked me what I felt when I saw a person in a wheelchair, I’d inevitably say, “Oh, that must be so hard for him.” Or if you asked me about a person who was Deaf, I’d probably say, “Oh, it must be awful not to be able to hear Beethoven.” It didn’t matter what the situation. I felt sorry for people who weren’t able-bodied in the way that our society defines it. Of course, I never thought I was being bigoted, because one of my best friends was in a wheelchair, and as we all know, if one of your best friends is….well, you know.

What does it mean to feel sorry for disabled people? What does it mean that I was glad not to be one of them? What does it mean that my first thought wasn’t about the person, but about how hard, how limited, how sad, how embarrassing, how terrible that person’s life must be? Is that really bigotry?

I think it is. My reactions were based on a stereotype of what a disabled person must be feeling, of what a disabled person must be thinking, and of what a disabled person’s life must be like. What’s missing from all of these moments is something as necessary to human existence as clean air and water. It’s called respect. Respect and pity do not go hand in hand. Respect and feeling sorry for someone do not go hand in hand. Respect and thanking God you’re not like that poor schmuck over there do not go hand in hand. Respect only goes hand in hand with full acceptance, with encouragement, with love for the individual, and with justice. Respect powers life forward. It doesn’t leave it hanging in mid-air while you wring your hands and think, “Oh, I’m so glad I’m not you.”

When I check out my attitude toward myself, I nearly choke on what a toxin disabilism really is. Lately, I’ve finally given in and begun using the “disabled” label to describe myself, as in “I am disabled in the culture in which I live, because the culture does not cultivate my strengths, support my needs, or respect my existence. And just for the record, being disabled does not mean that I’m disordered, broken, or impaired.” Why go through all of these words? Why explain it? Why be so defensive? Why not just say “I’m disabled” and get over it? Why do I feel saying that I’m disabled is “giving in” to some sort of adversary?

Because  in some of the deepest places in my being, those places in which the light of rationality and the balm of compassion have not yet entered, I think I’m pathetic. I feel ashamed. I feel broken. I’m one of those people over there: the ones who are always too loud, or walk funny, or talk funny, or look funny, or drool, or make weird sounds, or don’t get what’s going on. They’re the people I used to feel sorry for all those years when I thought I was being compassionate and accepting and helpful. Now I am one of them. Oh. My. God. Now I have to cross the line and say, “Yes, I’ve faked it really well all my life, and now, the facade is gone, and I am who I’ve always been.” I’ve always been autistic. I’ve always been disabled. I’ve always faked my way through everything and wondered why I hated myself so badly in the process.

When the culture tells you that being disabled means that your life isn’t worth as much as the next person’s life, that message tends to engender self hatred. When people talk about a cure for autism, what they’re really saying is that somehow, if you took away the autism, you’d get a person whose life was actually worth something. Well, excuse me, but the last time I looked, I’m the only one who can decide whether my life is worth something. I live in a world that makes it hard for me to believe sometimes, but that doesn’t make it so. Not by a long shot.

As I write these words, I’m aware that I’m making a major shift. I’ve gone from feeling dispirited about everything I can’t do to simply looking at the internalized, cultural messages that impede my ability to feel worthy of love and respect. I call that progress. In fact, in the life of this disabled person, it’s a major leap forward.

© 2010 by Rachel Cohen-Rottenberg

In my last post, I discussed my commitment to move ahead with my life in the knowledge that I have no extended family. That reality is still very clear to me, and I got a very vivid reminder of it last night.

As you might have noticed, I have a rather large extended (former) family, with many, many cousins. At this moment, I’m turning my attention to a cousin I’ll call Boris. I haven’t seen Boris in 30 years or more. I never knew her well, but over time, a couple of people in the family made remarks to the effect that she might have been abused as a child. As cousin Ralph might point out, I have no way of knowing one way or the other. Boris herself has never said anything about it. If she did, I would believe her, but we’re never going to get anywhere close to that conversation.

Read on for details.

After I had scattered the ashes of my hope for an extended family, my conscience started to bother me about Boris. What if she were another survivor? What if she thinks she’s the only one? It didn’t feel right to simply go away without saying something to her, but what should I say? I stewed on it for awhile, and I finally realized that all I needed to do was to give her my contact information, in case she ever wanted to get in touch with me. (Please stop groaning.) So, I sent her a message that was as benign and as neutral as I could possibly make it:

“Hi, I’m your cousin…I now go by my Hebrew name of Rachel, and I’m married. If you ever want to contact me, you can reach me at rachel.vermont@comcast.net.

I hope that all is well with you.
Rachel”

I knew that the family lie had made it to the outermost reaches of my (former) family, so I knew it was entirely possible that the lie had made it to her door. I felt good in my heart for having done the ethical thing, and that was all that mattered to me. And so, I was prepared for her to ignore me, or to simply say “Fuck off.”

But no. Nothing is that easy in my (former) family. I’ll paraphrase Boris’ response. She said:

1. She doesn’t have a cousin anymore.
2. Her losing me as a cousin was my choice.
3. I have to live with my choice, so go to hell.
4. If I ever contacted her or any member of her family again, she would seek out a civil harassment restraining order.

I will never have to get all “Aspie-and-wordy” again to describe the toxic nature of my original family system. You have the whole family dynamic in a nutshell, right here: shunning, blaming, distortions, lack of compassion, and unprovoked threats. There it is. All on a platter, along with my head.

And why? Because I offered someone I barely know my email address and said I hoped she was well.

Okey dokey.

So, then I got to talking with Bob and with a good Aspie friend of mine about this latest turn of events, and I suddenly realized that I was being bullied. Moi, bullied? I thought. Moi, with a blue belt in karate? Moi, with 25 years of therapy under my belt? Moi, the mama bear who has been known to risk reputation and throw social graces to the wind on behalf of her (now nearly grown) little cub? Yes, I’m afraid so.

And then, I thought, wow, that’s exactly what happened with my parents and with my brother. They bullied me. My father bullied me with physical pain, with unwanted touch, and with threats of harm. My mother bullied me with lies, ridicule, and manipulation. My brother once pinned me to a car because I disagreed with something he said, and he shunned me when I broke contact with my parents. And then there was Uncle Sylvia, and our disastrous conversation of three years ago, in which he ridiculed me for asking for love and compassion over what I had suffered. And come to think of it, every single family member who has heard the lies about me and believed them has been bullying me with their silence and their rejection ever since. It’s absolutely amazing to finally realize it.

All this bullying, all directed at me. Innocent, good-hearted, clueless, Aspie me. But why? I have a few ideas. (Feel free to add your own).

1. I walk into every room thinking that people are all set to receive love, attention, and goodness from me. I just have to be clear and non-threatening, and we’ll all get along, right? What could be simpler? Ha ha. It’s not bad to want to be loving and attentive, but the expression “pearls before swine” keeps coming to mind.

2. I am very childlike. I have a kind of innocence that all the abuse in the world has never been able to take away from me. So, I figure that people feel powerful bullying an innocent person. Or something. I have no idea. It’s just a guess.

3. For much of my life, I tried so eagerly, so earnestly, and so innocently to figure out the rules and play by them that people began to see me as defenseless. And, as a kid, I was defenseless, just as any other kid. But for me, there was an extra element of defenselessness, because little autistic me could not understand lying, cruelty, social rules, and social hierarchies. I just kept trying to make sense of them and be everyone’s friend. That made me more than a little vulnerable.

4. Despite my once-unquenchable desire to figure out the rules, fit in, and be normal, I have always been the Achilles heel of the family. Why? I’m an Aspie. I speak the truth. I break illusions. As such, I am the person who is the ever-present reminder that the family ain’t nearly as perfect as everyone would like to pretend it is.

5. I am the person who left the bullies behind. A dysfunctional family system cannot tolerate people leaving just on account of they’d rather not be bullied.

So, I reach out to someone genetically related to me, on the off chance that she might need it, just to feel that I’ve done the right thing, and the whole family system comes roaring right at me.

God, I’m having a serious autism moment. The gig has been up for a long time, and I’m the last to know.

Comments and hugs both appreciated.

© 2010 by Rachel Cohen-Rottenberg

On more than one occasion, friends and loved ones have shared with me the following definition of insanity:

Insanity is the process of doing the same thing, over and over, while hoping for a different result.

Personally, I think that’s a fine definition of insanity, so I’ve been looking at my recent debacle with my cousin Ralph and trying to decide whether my behavior meets the criteria. Certainly, after countless disastrous interactions with my original family members, my willingness to toddle over to my father’s side of the gene pool, hoping for a civil and productive conversation, might seem a little, well, nuts. But was it?

I don’t think so. I’ve begun looking at the disaster with cousin Ralph in a more spiritual way, using the Jewish idea of teshuva, which means “return.” Generally, we talk about doing teshuva when we’ve done something wrong; we acknowledge the wrong, we make amends, and we pledge not to repeat the mistake when the same situation arises again. If we can do those things, then we have returned, both to our original pure selves and to a state of harmony with others.

So I’ve been thinking: Why was I creating another cycle of return to the same place with my original family? What had I done wrong before, and what was I trying to do right in this interaction with Ralph?

My last less-than-ideal contact with a family member had taken place about three years ago. I contacted my uncle Sylvia (not his real name), hoping to reconnect. I was unsure of how or when to bring up the abuse, but I figured I’d find an appropriate moment. Unfortunately, as soon as Sylvia got my first email, he did an Internet search on my name and found a post I’d written about being an abuse survivor. As a result, the proverbial shit had hit the proverbial fan before we’d even begun.

At first, Sylvia questioned the idea that my parents could ever, ever have abused me, but a short time later told me that I had taken revenge on them by breaking contact. Revenge for what? I asked. For stuff that didn’t happen? No matter how many times I told him that I was interested only in my own survival, and that revenge had never been part of the equation, he couldn’t hear it. With each iteration, he got nastier. By the end, I pretty much broke down in a mass of tears and self-hatred, waved a white flag, and ended the interaction feeling like a victim. Again.

This time around, with cousin Ralph, a similar dynamic occurred, although to her credit, cousin Ralph did not get nasty with me in the way that uncle Sylvia had. However, the same mind-boggling question-the-abuse/acknowledge-the-abuse contradiction was there, expressed in emails containing such statements as “I have no basis on which to believe you” and “I had no idea you came from such a dysfunctional family.”

Excuse me for a moment while my head stops spinning.

There was also quite a bit of, shall we say, lying regarding the family photos. In one of her first emails, cousin Ralph had said that she had “many more” photos to send after the initial batch. In one of her last emails, however, she said that she’d just “scoured” the family albums and, well, gosh darn it, she just couldn’t find any more photos. Sorry! So sorry!

I hate it when people lie. I’d rather they just said, “Get the fuck out of my face.” That I could understand. Lying perplexes me. My Aspie brain just can’t quite believe that it’s happening. Why lie when you can just come out and say something? (That was a rhetorical question.)

Anyway, at some point in the interaction with cousin Ralph, I finally realized that I had to give up on having an extended family. I mean, I really, really had to give it up. And so, my friends, I must inform you that, during the past week, I made the difficult decision to remove from life support my brain-dead hope of ever having an extended family of people who share my DNA. (Services were private; in lieu of flowers, please make a donation to the charity of your choice.) After the cremation and scattering of the ashes, I was feeling very sad, so Bob wrote me the following beautiful email while he was in New York:

Hi love — Thinking more about Ralph’s e-mail, it seems to me that your decision to move on with your life as if there is no family is the right one. No matter what Ralph may or may not be willing to do in terms of a potential relationship with you, her email is simply another “missed opportunity” for people in your family to reach out to you in a loving, compassionate, understanding way. Whatever her reasons were for responding in the limited way that she did are her reasons, and have little if nothing to do with you. And hasn’t this been the problem all along? That no one has considered how you must feel about any and all of this?

And to me, that’s the real tragedy, and the source of the sadness I’ve been feeling lately about the absence of real family in your life. It underscores what you’ve been saying for all these years — that you’re a good person, that you’ve done nothing wrong, and that you deserve better from your family.

Sad to say, those are all good reasons to say goodbye to them. To close the door and move on down the road. The line from a Mary Black song goes something like, “We’ll never see what lies ahead if we’re always looking back.”

As I re-read these words last night, it came to me: I must end the interaction with Ralph with dignity. I cannot end it feeling powerless and screwed over. If I do, I’m just a victim again, just as I was in my interaction with uncle Sylvia, and just as I was in childhood. I must stay out of the victim place.

Sometimes, that’s hard for Aspies, because the world can feel like such a hurtful and incomprehensible place. But I can’t be a victim in this world. My innocence, my trustworthiness, and my truth-telling are some of my best qualities, and just because people occasionally take advantage of them doesn’t mean that there’s something wrong with me. So, with all these thoughts in mind, I gathered myself together and wrote the following email:

Before I launch into this post, I want to make it clear that my cousin Ralph knew me as a child and made the initial contact with me a few weeks back. I had written to a different cousin, one who had never met me and had not spent any time with my parents. He felt safe. Unfortunately, he had no genealogical information, so he passed on my email address to Ralph—without my permission. God forbid anyone in this family should have boundaries. Anyway, once she had my email address, she offered to send pictures, and her brother offered to send genealogical information. As you know, the process stopped cold a week or so ago.

A couple of days ago, I wrote a letter to cousin Ralph about the abuse I had experienced as a child. I agonized over writing the letter, and I did it for one reason and for one reason only: to speak my truth in the face of the lies that have circulated throughout the family for nearly 20 years. In various emails, cousin Ralph had hinted at wanting more information, so there was a context for proceeding.

Here is the letter I sent her:

Dear Ralph,

In several of the emails you sent, you seemed to want to know why I had become estranged from my parents. The story circulating around the family is untrue, so I will tell you what happened:

1. My father physically abused me from the time I was 4 years old until I was 19. The abuse stopped when I left for the west coast in 1978.

2. My father sexually abused me from the time I was 11 until I was 17. The abuse stopped only when I began sleeping at my best friend’s house during my senior year of high school, 1975-1976.

3. My mother was aware of all of the abuse and never stopped it.

4. As an adult, when I tried to talk with my parents about what had happened, my mother told me that the physical abuse was all my fault, and that the sexual abuse had never occurred. My father acknowledged that he had been wrong to beat me when I was four years old, but that he had done no wrong otherwise.

5. Because of my parents’ denial of what had happened, I felt very unsafe around them and became physically ill whenever I had contact with them.

In 1991, when I was 33, I wrote my parents a letter. I told them not to contact me, that I needed time away from them in order to heal, and that I would let them know when I was ready for further contact. In response to my letter, my parents told my brother, my aunts, and my uncles that I had threatened to call the police and accuse them of abuse if they ever tried to contact me.

I never made such a threat. Ever.

Everyone believed my parents. I lost my entire family. My brother, my aunts, and my uncles all knew me to be a good, caring, and honest person and yet, they never contacted me again. Why they believed the story my parents told, without ever asking me what had happened, is beyond my ability to comprehend.

If my Aunt Fred had been alive, she would have called me to find out what was going on. She was a loving person, no matter what the situation. But she had been gone for almost two years.

I have done the hard work of healing my life. I have a wonderful husband and a beautiful daughter. I have forgiven my parents, and I bear no fault for what they did to me. If you believe me and want to have a mutually respectful relationship, feel free to email me. If you don’t believe me, you need do nothing but continue your silence.

Rachel

And Ralph’s response? Let me summarize what was in it:

a) lots of words about how hard this was for her
b) lots of words about how she’ll never know whether my “allegations” are true or not

And now, let me summarize what was not in the email:

a) any belief in the truth of what I had written
b) any loving or comforting words

So here’s what I wrote to Ralph in my response:

Dear Ralph,

Your message makes me very sad. When my parents told a story defaming me, everyone in the family who heard it believed it unconditionally. They believed my parents without ever talking to me, and they shunned me. My uncle Sylvia (my mother’s brother) told me all about it when I contacted him a few years ago. He said that he didn’t want anything to do with me, even after I told him about the abuse. He said he couldn’t imagine my father abusing me–as though abusers look or sound different from the general run of humanity.

Everyone believed my parents when they lied, but when I speak the truth, no one in the family believes me or has any comforting words to say. You say you have no way of knowing whether what I am saying is true. Why would I say such painful things if they weren’t true? What possible motive could I have?

If you can’t believe what I’m telling you, then we have no basis on which to continue a correspondence. I was looking for photos and genealogical information as a way of feeling that I had something remotely akin to a family. I was excited about all the photographs you were going to send me, and I don’t understand why you stopped.

But I was really fooling myself. I don’t have a family. That is my parents’ legacy to me.

Rachel

I’m done with the family business, and I’ve left on my own terms.

I have never felt so alone. I have never felt so sad. And I have never felt such immense relief.

© 2010 by Rachel Cohen-Rottenberg

After reading the kind and strengthening responses to my last post, and discussing the matter thoroughly with my very wonderful husband, I made the wise decision to get off the family airplane. Although I detest heights, I summoned up the courage to pry open the emergency exit, jump into the air, pull the ripcord on my multicolored parachute, and drift slowly back to Earth.

I also sent the following email to my cousin Ralph, just to let her know that I had landed safely:

Hi Ralph,

I see that the family lie has reached your door. Mazel tov. Enjoy.

Rachel

The view from the plane was spectacular, but I am very glad to have my feet back on solid ground.

© 2009 by Rachel Cohen-Rottenberg

My fellow autistic wonder-folk, I wish to share with you the history of the family business–my family’s business. It’s a multi-generational, multi-regional business and yet, it’s also a well-kept, closely guarded secret of a business. I can’t begin to speculate on how it became such a wildly successful enterprise, given that most of you have never heard of it, but believe me, it’s been thriving for a long, long time. 

Legend has it that the company began in a shtetl somewhere in Poland, a shtetl where it was very cold, and the people kept warm by coming up with business plans and feeding the cookstoves with them. One of my illustrious ancestors, however, seems to have carved out a business plan in secret—a visionary plan—which he passed onto his firstborn son, who passed it onto his firstborn son, who passed it onto his firstborn son, and so on, and so on, ad nauseum, until this very old and very visionary business plan ended up in the duffle bag of a great-great-ancestor, who carried it with him in steerage when he set out for America.

To make a long story short, I grew up in the very heart of the family business. Although its true name was rarely spoken, I distinctly remember my mother making a joking reference to Take-A-Chance Airlines. Had the rest of the family not loudly shushed her at that moment, I would have forgotten the incident altogether, but shush her they did, and the secret was out: my parents owned a majority share in Take-A-Chance Airlines. Can you imagine the nausea excitement I felt? 

When I was small, of course, the company was barely out of start-up mode. It was limited to a few offices in a motel, a small apartment, and other decidedly unglamorous places. But as I grew, the company grew with me. By the time I was 11 years old, we had quite a fleet. I mean, the planes! Oh my God, you should have seen them! They were so shiny and so new, inside and out. There were purple plush carpets, purple upholstered chairs, valuable antiques, brand-new lava lamps, and a TV set for every passenger. It was unbelievable!

And you’ll never guess the best part. No. You won’t. I’m telling you. Are you ready?

They paid you to fly on the airplanes! Yes! They really did!  Sometimes, they paid you in cash that came in birthday cards; sometimes, they took you shopping for school clothes; and twice a year, they took you on an all-expenses-paid vacation to places like Florida, Bermuda, Nova Scotia, and Quebec. I don’t know how they managed to remain profitable by paying folks to fly with them, but the money kept coming in like nobody’s business. Of course, the CEO would complain at the dinner table that he was worried about finances, but from what I could see, everyone on those airplanes had all the comforts of home.

Well, most of them did. But not all. Oh, no. Not all. There were two small children, and they were not so very comfortable at all. They had beautiful seats on one of the biggest airplanes, but every now and then, someone would come over to the girl when she was sleepy and touch her in ways she didn’t like. And then sometimes, someone would come over to the boy or the girl and begin beating one of them for no apparent reason. And yet, miraculously, whenever a stranger came onto the airliner, the little girl would play the piano beautifully (yes, there was even a piano on the plane!) and the little boy would do his very best not to bring a hose through the window and flood the passenger area again.

Those were the days! Of course, there was a catch. It wasn’t called Take-A-Chance Airlines for nothing. While the fare was unbeatable, the planes seemed to tumble out of the sky on a regular basis. Sometimes, in the heady days of my youth, I would rush the cockpit, push all the buttons at once, lean into whatever would move, and get that baby back up into the air. But sometimes, I just didn’t know how to do it, and the plane would crash. I have the scars to to prove it. They’re not pretty, so I’m not including photographs. They’re mostly where you can’t see them anyway.

By the time I was in high school, I had started to wise up. I began carrying a parachute, a bedroll, a good pair of walking shoes, several days’ worth of water, and a map every time I got on a plane. I hid everything in my backpack, of course. I had to. You see, it was a well-known fact that on Take-A-Chance Airlines, the planes never crashed or even came close to crashing, which confused my little Aspie mind no end. However, I was smart enough to understand that if I carried a parachute in plane plain view, it might appear that the plane might crash, and then the whole family business would be ruined, all because of me. So I learned to mind my Ps and Qs, let me tell you.

By some miracle, I survived into adulthood. And then, one day, after one touch and one crash too many, I resigned my seat on the board of directors and left my interest in the business to my younger brother. From what I understand, he took over the business after our parents died, and he got their entire inheritance in the bargain.

But I’m getting ahead of myself. As I grew further and further away from the family business, I began to think more clearly about it. After paying people to listen to me rant and rave on a weekly basis for several years, I began to realize that the planes really had been crashing all those years, and that I wasn’t confused or crazy at all.

I want to say that the story ends there, and that I lived happily ever after, but I have two terrible weaknesses: 1) I am a very visual Aspie, and 2) I believe that somehow, somewhere, in one of the company’s regional offices, in a galaxy far, far away, there is a plane that will not crash. And so, after a long time away from the business, I began emailing distant family members on my mother’s side and asking them for old family photographs. Sometimes, I would get wonderful photographs, which I would gaze upon for hours on end. The words that came with the photographs were friendly enough, but I didn’t forge any new or close family relationships with their senders, so I began asking for photographs closer to home. With some desperation, I went to one of my uncles—just one of the innumerable family members who had never called to ask why I’d up and left the family business in the first place. I knew that contacting him was a foolish thing to do (kind of), but I really, really wanted those photographs.

And family. I wanted family. And a plane that wouldn’t crash. And I thought I’d found it when I first emailed my uncle. But I was wrong. As we emailed back and forth, the plane pitched and rolled worse than ever before. And while it was pitching and rolling, I found out that my parents had convened a family conclave in New Jersey, in which it was agreed that if one of their offspring, whose name begins with an “R,” were to contact any other family member for any reason, they were to put her on a plane that would begin its plunge the minute she began to relax and get comfortable.

And that’s exactly what happened.

As you can well imagine, the next several months of my life consisted of paying more nice people to listen to a spirited recitation of all the email exchanges that had taken place as the latest plane was diving into the ground. After awhile, I began to get hoarse, so I stopped talking and began to feel better. And when I began to feel better, I swore off doing stupid things like calling Take-A-Chance Airlines and using my real name to ask for a seat on a plane that wouldn’t crash.

For a while.

However, recently (I know, I know, you don’t all have to groan at once, do you?), I decided to toddle over to my father’s side of the business and see whether there might just be someone who had a little genealogical information and a whole bunch of a few really cool old family photographs of some kind or another. So I looked up people with my father’s surname on Facebook. You know, Facebook. Where you find your friends? And do social networking? What could possibly go wrong? I mean, there’s no sign that says, “Abandon hope, all ye Aspies who enter looking for unknown family members.” If there were a sign like that, I wouldn’t go near the place.

Anyway, as usual, my contact with my new family member started off nicely. I got settled into my chair. The handsome steward asked me whether I needed an additional Ativan to take the edge off my anxiety. I thanked him and said I’d take two. He gave me a glass of crystal clear spring water to wash them down. Everyone was cordial. I was cordial. I was. I was so fucking cordial,  I swear to God, every one of you would have mistaken me for an NT. Really. You want proof? Okay. Here’s proof:

My cousin Ralph (not her real name) sent me a packet of photos that arrived last Tuesday, December 22. Here is the email I wrote in response:

Hi Ralph,

I received the photos today. Thank you so much for sending them! I have been sitting in front of our woodstove, gazing at them. I especially love the ones with **personal family information excised for brevity…**

Again, thank you for sending the pictures. I’m really quite crazy about family photos of any kind, and have a whole wall of photos from my mother’s side of the family, going from my grandparents’ generation and back into the late 19th century.  I’m so glad to begin collecting photos from my father’s side as well.

All the best,
Cousin Rachel

Here is what Ralph wrote back by email the same day:

 Hi Rachel,

I am pleased that you are enjoying the pictures I sent.  I have many more and am experimenting with our new computer.  I think we have figured it out and am attaching some additional pics.  Please let me know if you get them and I will send others.

* Information about attached photos deleted for brevity *

When I hear from you, I will forward some more.  Hope you enjoy them.

Have a good evening.
Cousin Ralph

Here is what I wrote back by email the same day:

Ralph, these are gorgeous! I love them. THANK YOU!

Cousin Rachel

Did you notice the part where Ralph says she will forward more pictures when she hears from me? Five days later, I had not received a single picture. So, I remained my cordial, restrained, friendly self and wrote her the following email:

Hi Ralph,

I don’t know whether you got my previous message. I just want to make sure you know that the photos came through just fine, and that I really appreciate them.

All the best,
Rachel

Here is the response I received an hour later:

Enjoy

That’s it. One word. No salutation. No proper names. No punctuation. Nothing.  So, I figured I’d take one more careful crack at it (I know, I know, it’s getting pathetic already):

Thanks! I am.

The last time you wrote, you mentioned that you’d send more pictures once you learned that I’d received the ones you sent. Just checking in to make sure that all is well.

All the best,
Rachel

Now, I will freely admit that I am working with a couple of subtexts here. When I ask whether all is well, what I really mean is the following:

I hope no one has fallen gravely ill. I really do. However, in my heart of hearts, I know it’s more likely that you’ve been talking to my brother, or to my uncle (who just happens to live in the same town that you do), and that one of them has told you, in no uncertain terms, that I’m the most vile creature ever to walk the earth. And why do they say this? Because I got sick of being hurt by the two (count them, two) people in the family who were responsible for the unwanted touching and undeserved beatings of my childhood, and so I left them behind, and I saved my own life. And I’m sure that whoever you’re talking to has repeated the lie that those two people told everyone. What lie? That I’d written them a letter and told them that if they ever contacted me again, I’d call the police and accuse them of abuse—something that I never, ever threatened to do.

Why does no one believe me?

Oh, yeah, that’s right. The family business is called Take-A-Chance Airlines, my name starts with an “R,” and I always get the plane that crashes—except that the propaganda advertising for the business claims that none of your planes has ever crashed. So you’d better ignore me, because you might just have to acknowledge what really happened, and that would be outside your comfort zone.

Of course, I’m not going to elucidate the subtext to Ralph. At least, not right away.

Somehow, I don’t think I’m the one with the problem here. Except, of course, that I keep hoping to find someone who can stand outside the family business for more than a day or two. Someone simple, who uses words that mean something, and follows through on them. Someone like me.

My mistake.

© 2009 by Rachel Cohen-Rottenberg

Before I launch into the saga of how I made it through the past month in one piece, I wish to point out the following: I refer to the period between the last Thursday in November and the 25th day of December as the Christmas season. I refuse to call it the holiday season.

Why? Because I’m a foolish Aspie who believes in calling things by their proper names. I look around me at this time of year, and I see pretty lights and decorated trees. If I walk into a public place, turn on my radio, or watch TV, I hear Christmas carols. If I speak to another living soul, chances are that said living soul is either very, very excited or very, very stressed out about buying presents to put under the tree. What do any of these things have to do with Chanuka? Or Kwanzaa? Or the Buddha’s birthday? Or any other holiday on the face of the planet except Christmas? Nothing. Absolutely nothing.

Of course, many people celebrate Christmas as a secular holiday, concentrating on it as a solstice celebration. And certainly, as the Festival of Lights, Chanuka must have had its origins in the primal human need to shine a light in darkness. But my practicing Jewish mind cannot forget that Christmas isn’t simply a solstice celebration. For most people in the world, it’s a religious holiday, and while I can turn just about any piece of religious text into a metaphor, it’s very hard for me to be confronted by a life-size manger scene and symbolize it away. I experience the world so visually that these kinds of things have a visceral impact that I just can’t shake.

So, I like to call the season what it is. It’s Christmas time. For people who love Christmas, who have wonderful times with family, and who are not easily overwhelmed by crowds or by the excited, frenzied energy of other people, it’s a happy time. I respect that. I accept that others have customs and beliefs of their own, and I do my best not to complain during the Christmas season—at least, not outside my own house. Now that Christmas has passed, however, I want share how I deal with a time of year that I typically dread.

For most of my life, I’ve always identified my dread as that of a Jewish woman surrounded by the trappings of an entirely alien culture. It’s not as though I see my Jewishness reflected in the larger culture in July or anything, but at Christmas time, I cannot go anywhere and find respite from the goings on. To put it bluntly: Christmas is in my face wherever I go. There is no escaping it. I’ve even tried going on Jewish spiritual retreats in December, only to have people sing Hebrew prayers to the tune of Rudolf the Red-Nosed Reindeer. You haven’t lived till you’ve seen a guy in a tallis singing Adon Olam to the tune of a Christmas carol.

Now that I realize that I’m autistic, I’ve become aware that I’m not just feeling the alienation that springs from being a member of a religious and cultural minority. In the best of times, being autistic means that I feel as though I live in a foreign country and will never fully learn the language. At Christmas time, that feeling intensifies by several orders of magnitude. I don’t understand what all the excitement is about, and I can’t even begin to parse the social rules. When someone wishes me a “Merry Christmas,” what am I supposed to say? I almost reflexively say, “Same to you,” but inside, I’m thinking, “I don’t celebrate Christmas. Why do you think I do? Now I’ve just gone and pretended that I do, which is a lie.” I get caught between the social niceties and the truth. It happens the rest of the year, too, but at Christmas it happens just about all the time. 

Unfortunately, the more generic “Happy Holidays” greeting does not remedy the situation. I know that people are trying to be ecumenical and embracing, but it doesn’t work. At least, it doesn’t work for me, especially during those years when Chanuka begins in early- to mid-December and is already over before I get wished a happy one. At those moments, I have to choose between saying, “Same to you” and “My holiday is already over.” Because I am a nice person, I usually just say, “Same to you,” but I’m basically lying. Again. I’m suggesting that I’m still happily celebrating Chanuka when all the latkes have already been eaten and all the menorahs have already been put away.

This year, I began to realize that being autistic gives me a bonafide, neurological reason for staying away from all the goings on associated with Christmas. At any other time of the year, I am very careful about where I go. In order to avoid sensory and empathic overload, I stay away from loud places. I stay away from crowds. I wear earplugs and a noise-blocking headset just to go grocery shopping. So going out during the Christmas season is absolutely out of the question. All the frenzied, stressed, excited energy out there would hit me like a tsunami, and I’d come home exhausted, disoriented, and sick. Why do that to myself? There is no good reason.

So, starting on Thanksgiving, I went on retreat—in my own house. Of course, I planned ahead. I made sure that I had sufficient food from my four major food groups: protein, winter vegetables, spelt flatbread, and dark chocolate. I cancelled my volunteer work, my ASL tutoring, my trips to the co-op, and every other outside activity except my therapy appointments. In fact, when I told my therapist how I was spending my time, he said, “What a great idea! If more of my clients said ‘If I haven’t bought it by Thanksgiving, it’s not getting bought,’ I would see a significant improvement in their moods and levels of functioning.” I felt supported.

Other than my weekly trips to the therapist, I stayed home and did all kinds of fun things. I did some quilting. I exercised on my stationary bike. I got all the materials ready for knitting Bob a sweater. I joined Facebook and found an astonishing number of childhood friends. I did some very satisfying genealogical research on Ancestry.com. I had some very nice contact with a cousin who sent me some wonderful old family pictures. I watched an episode of “Buffy the Vampire Slayer” with Ashlynne and several episodes of “The Wire” with Bob. I supported Bob’s week-long trip to California, and I enjoyed the solitude. A lot. Surprise!

Of course, I also celebrated Chanuka and Ashlynne’s 17th birthday. This year, Ashlynne got the use of my car, and I got the best present ever: two of my Facebook friends, who are not Jewish, wished me a happy Chanuka while it was still Chanuka! Do I have good judgment when it comes to friends, or what?

I had a good time. And I’m in a good mood. And after January 1st, I’m going to resume my regular activities.

I like this way of passing the Christmas season. I’m going to make it a tradition.

© 2009 by Rachel Cohen-Rottenberg

The very idea that autism appears in any book called the Diagnostic and Statistical Manual of Mental Disorders is deeply offensive to me. When I venture in and try to make sense of the current split between the diagnostic criteria for Asperger’s and autism, all I can see is that it places autistic people into hierarchies that make no logical or practical sense.

Because this whole subject is really bothering me, I thought it might be fun to rewrite the diagnostic criteria, line by line, so that the text describes us as something more than walking collections of mysterious pathologies. In my rewrite, I have maintained each line of the diagnostic criteria with a strikethrough, followed by my proposed changes. Because the people who wrote the diagnostic criteria reused some of the same text, but didn’t bother to create a consistent numbering scheme, I couldn’t combine the criteria for Asperger’s and autism without adding more illogic to the situation. In a perfect world, people would check their writing for logical consistency before they publish it. Since they didn’t, my rewrite consists of two parts.

Part One
How to Tell Whether Someone is an Asperger’s Awe-tistic
Diagnostic Criteria for 299.80 Asperger’s Disorder

(I) Qualitative impairment in social interaction, as manifested by at least two of the following:
(I) An unusual mode of social interaction, as manifested by at least two of the following:

(A) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
(A) An acute sensory and empathic sensitivity that i) makes eye contact and social interaction intensely difficult and ii) results in the rejection of ambiguous nonverbal behaviors in favor of direct, detailed, and honest speech.

(B) failure to develop peer relationships appropriate to developmental level
(B) Beginning in early childhood, a gift for developing relationships with people of widely different ages and developmental trajectories.

(C) a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)
(C) The understanding, gained uncannily early in life, that i) most people will not appreciate the awe-tist’s interests or achievements, and ii) showing, bringing, or pointing out objects of interest will be met with judgment and/or hostility that manifest in socially acceptable forms of repression (such as social exclusion) or criminal acts (such as physical assault).

(D) lack of social or emotional reciprocity
(D) An acute sensitivity to the feelings of others that causes the awe-tist to refrain from using banal pleasantries or empty words that may hurt or offend.

(E) An altogether eccentric form of social and emotional reciprocity that insists upon fairness, directness, sensitivity, tolerance, substance, acceptance of difference, and mutually interesting subject matter.

(II) Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:
(II) Specialized, disciplined, and brilliantly useful patterns of behavior, interests, and activities, as manifested by at least one of the following:

(A) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(A) A passion for one or more specialized subjects extraordinary in intensity and focus.

(B) apparently inflexible adherence to specific, nonfunctional routines or rituals
(B) An innate capacity for self-care that manifests itself in the creation of comforting routines and a fascination with patterns of all kinds.

(C) stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
(C) An innate capacity for sensory self-regulation by means of various stims, which can encompass such soothing activities as joint compression, touching the comforting texture of soft fabrics, watching spinning objects, and so forth.

(D) persistent preoccupation with parts of objects
(D) An exceptional ability to work with objects in an unconventional fashion.

(III) The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.
(III) Because the world is not yet attuned to the acute sensitivities and extraordinary gifts of awe-tistic people, being awe-tistic can result in social ostracism, occupational dead-ends, and other disappointing outcomes. For the lives of awe-tistic people to improve, early educational and social intervention in the lives of neuro-typical people is recommended.

(IV) There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)
(IV) Whether you started talking at two years old or four years old, does it really matter?

(V) There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.
(V) We are certain that in a different time and culture, awe-tistic people would have places of honor as shamans, dreamers, healers, artists, builders, and trusted confidantes.

(VI) Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.
(VI) The person’s awe-tistic consciousness is not better accounted for by some other type of hierarchical hair-splitting that results in diagnosing life itself as a kind of disease.

Part Two
How to Tell Whether Someone is Awe-tistic, Period
Diagnostic Criteria for 299.00 Autistic Disorder

(I) A total of six (or more) items from (A), (B), and (C), with at least two from (A), and one each from (B) and (C):

(A) qualitative impairment in social interaction, as manifested by at least two of the following:
(A) An unusual mode of social interaction, as manifested by at least two of the following:

(1) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
(1) A lack of reliance on the use of ambiguous nonverbal behaviors.

(2) failure to develop peer relationships appropriate to developmental level
(2) A love of solitude and solitary play.

(3) a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)
(3) The understanding, gained uncannily early in life, that i) most people will not appreciate the awe-tist’s interests or achievements, and that ii) showing, bringing, or pointing out objects of interest will be met with judgment and/or hostility that can manifest in socially accepted forms of repression (such as social exclusion) or criminal acts (such as physical assault).

(4) lack of social or emotional reciprocity
(4) An acute sensitivity to the feelings of others that causes the awe-tist to refrain from using banal pleasantries or empty words that may hurt or offend.

(5) An altogether eccentric form of social and emotional reciprocity that insists upon fairness, directness, sensitivity, tolerance, substance, acceptance of difference, and mutually interesting subject matter.

(B) qualitative impairments in communication as manifested by at least one of the following:
(B) qualitative differences in thought and perception as manifested by at least one of the following:

1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
1. Visual and associative thought patterns that the awe-tist has difficulty translating into the more restrictive medium of verbal language.

2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
2. An acute sensory and empathic sensitivity that makes spending extensive periods of time with people intensely difficult.

3. stereotyped and repetitive use of language or idiosyncratic language
3. An effort to use language despite the tremendous challenge of transitioning between visual/associative thinking and verbal/linear expression.

4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
4. The development of all kinds of unique, idiosyncratic, and interesting ways to spend one’s time.

(C) restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least two of the following:
(C) Specialized, disciplined, and brilliantly useful patterns of behavior, interests, and activities, as manifested by at least two of the following:

(1) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(1) A passion for one or more specialized subjects extraordinary in intensity and focus.

(2) apparently inflexible adherence to specific, nonfunctional routines or rituals
(2) An innate capacity for self-care that manifests itself in the creation of comforting routines and a fascination with patterns of all kinds.

(3) stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
(3) An innate capacity for sensory self-regulation by means of various stims, which can encompass such soothing activities as joint compression, touching the comforting texture of soft fabrics, watching spinning objects, and other similarly enjoyable activities.

(4) persistent preoccupation with parts of objects
(4) An exceptional ability to work with objects in an unconventional fashion.

(II) Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:

(A) social interaction
(B) language as used in social communication
(C) symbolic or imaginative play

(II) Because awe-tistic people often see the world in unusual ways, the difficulty of translating awe-tistic consciousness into the more restrictive medium of verbal language may result in the pathologizing of awe-tistic social interaction, language development, and play.

(III) The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder
(III) The person’s awe-tistic consciousness is not better accounted for by some other type of hierarchical hair-splitting that results in life itself becoming a kind of disease. 

© 2009 by Rachel Cohen-Rottenberg