Archive for Spectrum Pride

Why I’ve Changed the Name of My Blog

February 13, 2010 Rachel Administrative, Belonging, Marginalization, Spectrum Pride

I’m tired of the Asperger’s label.

I’m tired of people using it to distance themselves from other autistic people.

I’m tired of the folks who imply that having Asperger’s makes being autistic okay, but that being autistic is somehow not okay.

I’m tired of being put into some sort of nonsensical order in which Aspies rate higher than other autistics.

I’m tired of division.

I’m tired of hierarchy.

Bev’s latest post says it all for me. And by changing the name of her blog, she’s inspired me to do the same.

At some point, I hope to change my domain name as well. I haven’t figured out the mechanics of using a new domain name and making sure you all can find me there, but when I do, I’ll make the change.

UPDATE: If you’ve found the new URL, you’ll see that I’ve changed my domain name. I’ve specified the proper settings to redirect people automatically from aspergerjourneys.com, but it may take up to 72 hours for the settings to take effect. Argh. Meanwhile, I’ll need to go through and repost all my photos again, since they’re attached to my old domain name.

Note that I also have a new email address: rachel@journeyswithautism.com.

© 2010 by Rachel Cohen-Rottenberg

12 comments

Making Friends with My Eccentricity

January 24, 2010 Rachel Aging, Belonging, Friendship, Happiness, Spectrum Pride

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

9 comments

Struggling with Internalized Disabilism

January 16, 2010 Rachel Ableism, Disabilities, Spectrum Pride

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

12 comments

Some Thoughts on Autism and Bullying

January 11, 2010 Rachel Aging, Bullying, Childhood, Communication, Spectrum Pride

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

9 comments

If I Could Rewrite the DSM-IV Criteria for Autism

December 20, 2009 Rachel Alternative Theories of Autism, Critiques of Autism Theories, Diagnosis, Mainstream Theories of Autism, Spectrum Pride

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

33 comments

The Gift of Being Autistic

December 1, 2009 Rachel Critiques of Autism Theories, Diagnosis, Spectrum Pride

I’ve been pondering the fact that while neuro-typicality is considered “normal,” autism is considered a medical condition. This lack of balance bothers my autistic soul, which craves symmetry, integrity, and basic fairness.

Perhaps, at some future date, autism will be removed from the DSM, much as homosexuality was entirely stricken from its pages in 1986. I don’t expect to see this development in my lifetime. The scare tactics of organizations like Autism Speaks; the ways in which scientific researchers have appropriated our voices; the fact that we are the subjects of medical and psychological “research” to find “treatments” and even a “cure”; the propensity of so many people to define only one way of thinking and believing as “normal”— all these factors mean that the struggle for respect and empowerment will be a long and difficult one.

Even before I knew that I was autistic, though, I got the message that something was “wrong” with me. Whatever it was, it had to be “fixed,” preferably with the help of medical professionals. I’ve defined the problem in a number of different ways over the course of my lifetime: insecurity, self-loathing, difficulties with trust, anxiety, depression, loneliness, failure to find “community,” a relentless inability to sit down and shut up when told to do so, a tendency to go on and on and on about the topics I’m passionate about, and anger at things that other people just shrug off. After nearly every conversation I’ve ever had with anyone, anywhere, I’ve thought, “Did I do that right? I hope so. I’d better replay the whole thing and make sure I wasn’t too much of an idiot.” I knew that while other people were going home and thinking about what a nice time they’d had, I was obsessing about whether I’d screwed up.

Well, my dear friends, I am happy to tell you that the idea that I’m broken is on its way out. I can’t say that it’s gone entirely, or that it won’t re-emerge at a later time, but today, right now, I know that I am so much better than fine. I know that I have a gift—the gift of being autistic. In another culture, at another place and time, I might have been honored for this gift, and I might have been given wise counsel for where this gift might lead me. As it is, I’ve had to stumble along until I just couldn’t stomach the idea that I’m broken anymore. And then, a new world began opening up to me.

I first noticed it happening when my ASL tutor came over a couple of weeks back. She is an artist, and she teaches art at the school for the Deaf. She was born with tinnitus in both ears, so she can hear and speak, but it’s quite difficult for her in many of the same ways it’s difficult for me. She doesn’t like being around crowds of people, because it’s hard for her to pick out what people are saying. So, using a combination of signing and speaking, we got to chatting about a number of things, including art, and I invited her to take a little tour of my house. We have a lot of artwork in this house—not just mine, but paintings by Bob’s grandfather and grandmother, some Ethiopian embroideries, my daughter’s photography, and a number of old ancestor photos. My tutor really loved looking at all the artwork, and she was so direct, so honest, and so enthusiastic in her responses that I felt even more comfortable with her than I had before. The similar ways that we process sound and speech seem to lead to a similar need for directness and friendliness. It’s as though we both know there is little time to waste with anything else.

Then, I got together last Sunday with my new Aspie friend who lives nearby. I was thinking that we’d spend two hours together at the most, but the afternoon just kept on going and going. When I got home 3 ½ hours later, I was tired, but not “strung-out-and-running-on-fumes” tired. I got home and thought about what a nice time I’d had, just like a regular person.

How did this happen? Well, first of all, I knew that my friend thinks as I do: associatively and intuitively, rather than linearly and analytically. It’s not that we can’t get all linear and analytical; we can, and we do. But before we get there, we’re free associating and intuiting connections all over the place, and it’s great fun. That day, being in the presence of someone else whose thought patterns are like mine took away a great deal of social anxiety. I knew that I could just relax and let my mind do what it does. So, for example, when I had a story to tell, my friend gave me plenty of room to tell it. Sure, I repeated myself, and made leaps of logic, and went down some little incidental and tangential byways, but it was all okay. And when she spoke, she did the same things, and I gave her plenty of space to express herself. Can you say “social reciprocity”? And the best part was that, as a speaker and as a listener, I didn’t feel compelled to follow any kind of linear logic, because we were engaging in a different kind of logic altogether. What a relief! It’s so tiring to try to follow most conversations because their form is so alien to the way that my mind works.

Needless to say, it felt perfectly okay to engage in apparent non-sequiturs that day, knowing that my friend understood that these non-sequiturs were simply the result of the way I think, and did not signal disrespect or lack of interest in what she was saying. So, at one point, we were looking at the fun stuff on her refrigerator, and the next moment, I turned into the living room and started (metaphorically) tripping on this very cool table she had placed by the window. It went something like this: “Your boyfriend seems like a wonderful person, and I love the Halloween costume he’s wearing in this picture and…WOW! Look at that table! I love it. It’s got a place under it to hang glasses, and a cloth holder below for wine bottles, and…Wow! I just love such compact, multi-purpose stuff, you know?” Did she look at me like I was crazy? No. She showed me the hidden place for the ice bucket.

My new friend is also the person who recommended that I read The Cosmic Serpent by Jeremy Narby, a book that has broken open my visual thinking and my love of texture, pattern, color, and image. Suddenly, I’m making art nearly every day. Do most people do that? No. Does that mean there’s something wrong with it? Of course not.

My ability to engage the world associatively, visually, intuitively, and empathically is a great gift. My passion for balance and for justice is a great gift. My ability to enjoy solitude is a great gift. My ability to create things of beauty is a great gift. The intensity with which I feel things, hear things, and see things is a great gift.

None of these gifts are easy. Having a gift does not necessarily make life fun. In fact, having a gift and not knowing how to use it can make the world a cold and lonely place. Most of us live in a culture that pathologizes our way of being, rather than giving us support for using our gifts. Many of us wander in the wilderness for most of our lives, wondering where the hell it is we’re going. It isn’t fun, but having fun is not the same as knowing joy. Sometimes, finding joy is hard work and takes a lifetime of wandering. But to be able to value one’s own gifts, on their own terms, without reference to an arbitrary idea of “normal,” is the beginning of joy.

There are times that I feel so changed that I don’t recognize myself. Who is this person making art with a high-temperature glue gun and pieces of an old camera? Who is this person who has suddenly discovered that hand-stitching a quilt is a calming and centering practice? Who is this person who thinks associatively, and rambles on, and knows that far from something being wrong with her, something is very right with her?

It’s me. I’m an autistic person who has finally figured out that I don’t need to change. I just need to be.

© 2009 by Rachel Cohen-Rottenberg

9 comments

My First Quilted Wall Hanging

November 27, 2009 Rachel Fiber Art, Making Art, Spectrum Pride

As promised, here is a photo of my latest creation, hand-stitched and made entirely of Guatemalan fabric:



















The piece measures 18 by 24 inches. Each of the twelve squares is made of three different strips of fabric. I loved working with the fabric and trying out different patterns for the arrangement of the squares.

Such fun!

© 2009 by Rachel Cohen-Rottenberg

7 comments

Living a Visual Life

November 24, 2009 Rachel Fiber Art, Making Art, Spectrum Pride, Visual/Spatial Skills

A couple of weeks ago, I began reading an incredible book called The Cosmic Serpent: DNA and the Origins of Knowledge by Jeremy Narby. I won’t go into detail about the content of the book; suffice it to say that the author comes to his conclusions by looking at visual forms, and that he explains his findings by combining text with art from a wide array of indigenous cultures, ancient and modern. Both the form and the content of the book are so engaging to my visual sense that my associative mind has been running free and making connections between the author’s observations and a variety of ancient Jewish motifs and ideas.

In the course of reading the book, I’ve learned that I think in visuals far more than I’d realized. Sometimes, the visuals are clear pictures, and sometimes, they consist of outlines, textures, or colors that represent ideas and feelings. Because I’ve never been any good at representational art, I’ve never considered myself a visual thinker, but it’s clear now that I am most comfortable when I’m thinking visually and associatively, rather than verbally and linearly. I’m coming to this realization rather late, I think, because I grew up in two excessively verbal and vocal cultures—American culture and Jewish culture—and I learned to navigate so well in words that I couldn’t see the process behind the words until now.

As you’ve probably noticed, I’ve been writing about one post a week. I still love writing, but I’ve found that I need to balance my identity as a writer with living in the world of the visual. So, I’ve been immersing myself in a number of art projects and finding out just how much I love color, shapes (especially helixes), and the process of putting something together that wasn’t there before. In this post, I want to share what I’ve been doing—both over the course of the last year and at the present time.

I love making wind chimes, and in the spring, I made two wind chimes from parts that I “borrowed” from an old plastic xylophone.  (The plastic part of the xylophone became a lobelia planter for the garden.) Here are the wind chimes, one made from warm colors…

 

















…and the other made from cool colors:

 

















More recently, I’ve made two pieces of art from the contents of an old, broken digital camera and printer dock, along with some springs and beads I picked up at the thrift store:

 















I’ve also been delving into sewing and quilting. First, I created a new backpack from the remains of a skirt I made last year. I love the deep blue, teal, and purple of the Guatemalan fabric, and I fashioned the backpack so that the pull straps close the top of the pack when you put it on:

 

 

 

 

 

 

 

 




Then, I started working on a quilted wall hanging made of fabric from clothing and other items that were wearing out. While I was in the process of cutting the material, I decided to make a potholder from the scraps. It’s unusual that I make anything unplanned and asymmetrical, but I had a good time patching the potholder together and finding out what would happen. I like the result very much:

 

 

 

 

 

 

 





I still need to sew the backing onto the wall hanging. When it’s done, I’ll post a photo of it.

© 2009 by Rachel Cohen-Rottenberg

7 comments

I Do Not Suffer from Autism

November 8, 2009 Rachel Spectrum Pride

I do not suffer from autism.

I suffer when someone calls my way of being a disorder.

I suffer when others invest time and money to prevent people like me from being born.

I suffer when anyone suggests that I might recover or be cured.

I suffer when others feel sorry for me or for the family I have created.

I suffer when I fear that people will consider me broken.

I suffer when my being autistic scares people away.

I suffer when others try to silence me.

I suffer when people suggest that I do not have all the same feelings they do.

I suffer because I must describe my way of being by referring to a medical diagnosis.

I suffer because I live in a society that does not celebrate difference.

I suffer because I live in a culture that does not cultivate sensitivity.

I suffer because I live in an environment that values appearance over substance.

I suffer because I live within a social order that calculates human worth based on productivity and conformity.

I suffer because I live in a world that does not honor the gifts that autism brings me.

I suffer because I have learned to apologize for who I am.

But make no mistake: I do not suffer from autism. I do not suffer from who I am.

© 2009 by Rachel Cohen-Rottenberg

34 comments

It’s the First Anniversary of My Autism Diagnosis!

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank you all for being part of it.

© 2009 by Rachel Cohen-Rottenberg

9 comments
« Older Entries   Recent Entries »