Journeys with Autism

A little while ago, I interviewed my friend Ben about the road he took to an autism diagnosis. I related very much to Ben’s process. Perhaps you will, too.

Rachel: When did you first suspect that you were on the spectrum?
 
Ben: Well, I never suspected I was. I have a friend who had figured it out for herself about six months earlier and asked me if I had ever heard of Asperger’s Syndrome. It was almost like the time my mom asked me if I was gay. After we talked for a while, I went home and spent several days researching AS online, exhaustively. I got books out of the library (Pretending to be Normal and Tony Attwood’s guide, among others). I had spent my life knowing I was odd and different, and now I had a label to hang on it.
 
Rachel: How did you feel about discovering that you’re on the spectrum?
 
Ben: I swung back and forth between elation that I wasn’t the only person like this, that there was a name, that it was even a “syndrome,” to feeling that I now had to give up on some long-standing but pretty useless aspirations for myself. I was worried what this might mean for my relationship, too. After all, my partner already knew me and wasn’t going to be freaked out by a label, but I was worried he might be upset at what he’d have to give up as well—like the possibility that I would never be okay going camping, or out to clubs to go dancing (without my earplugs). The up side is that even though my partner isn’t an Aspie, he shares some significant AS-like traits, which helps in the areas of sympathy and understanding.

It’s been over a year, and I still have days that I’m sad when I realize there’s a particular something I’m never going to be good at.
 
Rachel: When did you self-diagnose and what assessment tools did you use?
 
Ben: Winter of 2008. I used the DSM-IV definitions, but found online personal experiences of people to be much more confirming. The DSM doesn’t cover weird AH HA! moments like:

Clothing tags!
Eating habits!
Sensory overload and extreme sensitivity!

Have I ever met a person with my amazing sense of smell? Not really. It’s fun but almost useless in daily life, and sometimes distracting or debilitating.
 
Rachel: Did you bring your self-diagnosis to a therapist?
 
Ben: I spoke with my therapist, whom I was seeing for cognitive behavioural therapy for depression (!) and anxiety(!). I don’t think he believed I could have AS because I made excellent eye contact (thank you!) and could be gregarious and talkative (nervousness channeled). He said we could find some specialists and get a formal diagnosis, but never pursued it. I stopped seeing him about four or five months after telling him about the AS.
 
Rachel: Why did you decide to seek out an “official” diagnosis?
 
Ben: I finally asked my family doctor for a referral, about ten months after my self-diagnosis. I wanted one for medical reasons, to be able to treat some of the anxiety and other complications that come up for many Aspies. I wanted to find out if I could access government programs or assistance for the disabled. I wanted a “piece of paper” that I could have ready when the world said I just needed to work harder at it and that I could be like everybody else.

What can I say? I was brought up in the same culture that values certification and credentials.
 
Rachel: How did you feel about the prospect of diagnosis?
 
Ben: Nervous.
 
Rachel: When did you have the assessment?
 
Ben: Last October, 2009.
 
Rachel: What did it consist of?
 
Ben: Sitting down with a psychiatrist and talking over the usual AS points.
 
Rachel: How long did it take, and when did you get the results?
 
Ben: About an hour, and he told me immediately. The results were forwarded to my family doctor.
 
Rachel: Has your “official” diagnosis been a positive step? Has it had any significant impact on your life, positive or negative?
 
Ben: Mostly positive. It kind of gets any “Am I or am I not?” questions out of the way. It makes sure my family doctor knows I’m not making it up, but it hasn’t had a huge impact on my life. I was quite certain I had AS before the diagnosis, but because the definition and the right to access services were controlled by others, I needed to be “officially” AS in order to consider telling anybody in authority (government agencies, employers, etc.) that I did indeed have Asperger’s Syndrome.
 
Rachel: What do you like most about being on the spectrum?
 
Ben: My slightly tangential approach to thinking and problem solving. My acute senses and “noticing” of things.
 
Rachel: Ben, thank you for sharing your experience.

© 2010 by Rachel Cohen-Rottenberg

I’ve been very gratified by how excited and supportive people have been about the new name for my blog and my reasons for choosing it. Apparently, a number of others feel as I do about wanting to distance themselves from anyone using the Asperger’s label in an elitist way.

For me, dropping the Asperger’s label is the right decision. It’s been a long time coming, and I feel liberated by letting go of the pretense that I am anything other than autistic. But the process of coming to terms with who we are, especially for those of us who discover that we are autistic in mid-life, is complex and personal. I would never judge the process of a fellow autistic who is trying to carve out his or her path. For many autistic people, the word Aspie feels absolutely right, and I would never want to take that good feeling away. So, I want to be very clear: I don’t have an issue with anyone who self-identifies as an Aspie or uses the Asperger’s label, so long as the person is not being elitist, divisive, or dismissive of anyone on the spectrum. If someone self-identifies as an Aspie, and wants to be called an Aspie, I will respect that choice.

Remember: The DSM criteria do not even come close to describing the experience of being autistic. Not even close. Not even in the ballpark. Not even in the same country. And I’m talking about the criteria proposed for the DSM-V as well as those already in the DSM-IV. They are so far off the track, it’s ridiculous.

So I don’t want to put too much energy into arguing over labels. I want to do what I’ve always done with this blog: to talk about the experience of autism from the inside, to give and receive support, and to discuss the joys, challenges, difficulties, and gifts that come with being autistic.

© 2010 by Rachel Cohen-Rottenberg

Two weeks ago, I had an experience that was life-changing. It was so intense that I haven’t been able to write about it until now.

It was a Thursday afternoon, and I had spent two hours working at the nice, spacious, quiet new thrift store. I like working there, and the staff gives me good, tactile, straightforward things to do—like tagging items, stamping bags, pricing books, and so forth. Now that I’ve told them that I sew, they’ve been sending me home with quilts in need of repair, and I’ve been having a wonderful time bringing them back to life. For example, here are before and after photos of my latest quilt renovation project:

So, anyway, back to the day in question. That day, I decided to wear only my earplugs to the store, and to take them out when I wanted to talk with people. For awhile there, the Zoloft seemed to be helping my sensory sensitivities and language processing issues, so I was feeling confident. Unfortunately, moderation is very hard for me. When my power switch is turned to “On,” it gets stuck, and it takes something rather harrowing to get it turned to “Off.” As a result, on this particular day, I had a 5-10 minute conversation with one person, and listened to another 5-10 minute conversation between two other people, and talked with my friend Tom (who has auditory sensitivities similar to mine, though not as severe). In other words, I was chatty.

Then I came home and felt like I was getting the flu. I mean, everything hurt. Everything. My joints. My muscles. My skin. My stomach. My head. I told Bob how I felt, and he thought I was getting the flu, but I knew it wasn’t the flu. It was the stress of talking, listening, translating, falling behind, talking, listening, translating, falling behind, talking, listening, translating, falling behind, over and over and over and over and over until I couldn’t think straight anymore. It’s as though the stress were radiating to every part of my body. I’ve felt so often over the past year as though I were getting the flu, but then I take a day or two to myself, and I feel better. So I finally figured out why I was getting sick.

Once my nervous system calmed down, I decided that I had to grasp the bull by the horns before it gored me to death, so I wrote the following email to the lovely managers and volunteer coordinator at the store (titled “Working Around My Disabilities”):

Hi all–

I plan to be working at the store this coming Wednesday and Thursday, and then to switch to Tuesdays and Thursdays in the following weeks. I will need to come in from noon-2pm (rather than 11 am -1 pm), because I’m needing my mornings for better self-care. Please let me know whether those hours will work for you.

When I come to the store, I’d like to communicate with written notes as much as possible. Don’t get me wrong—I absolutely love talking with all of you—but talking and listening are getting more and more difficult. Everything in me just wants to be “normal” and chat it up with everyone, but I overdid it last week and came home with muscle pain and body aches. My body seems relentlessly committed to reminding me that my autism and sensory processing issues are disabilities (even though I look pretty typical, even to myself) and that I need to take care.

See you on Wednesday…

Love,
Rachel

When I got back to the store the following week, I wore my earplugs and my headphones, and I knew that I could not remove them for any reason. The store managers were totally cool about it and communicated with me via notes. They love the work I’m doing on the quilts, they’re glad to have me at the store, and all is well with that part of the world.

Except, of course, that my last piece of denial is in shreds—the piece of denial that says, “Oh, come on. You can talk. You can listen. How hard can it be?” It’s hard. Unless it’s a one-to-one conversation with a close friend, a fellow Aspie, or a family member, it’s a non-starter. Completely. I know it. And knowing it makes me feel both incredibly relieved and very depressed.

The thing about being autistic and not finding out about it for 50 years is that I’ve had a lot of practice at looking around at all the things that interest me and thinking about how much fun they would be to do. Despite the fact that the world is quite overwhelming to my senses much of the time, I find the things that people do quite interesting. In fact, except for accounting and flipping burgers, there is very little in life that I don’t find interesting. I’d love to know how to cut people’s hair. I’d love to know how to repair a car engine. I’d like to know how to play soccer. I’d like to speak five different languages. I’d like to walk into a situation with people and talk to them. My brain looks at things and thinks, “That looks like fun.” And then I try to do them and find that they involve extended interactions with other people, and that’s all she wrote.

So, I now understand that I’ve got a serious disability going here, and I realize that I must tell people what I need without feeling ashamed or apologetic. I have no choice. I must advocate for myself and ask for the accommodations I need. With this reality in mind, I went to my appointment at VocRehab yesterday, and had a very good conversation (in writing and a bit of ASL) with my counselor Will, who is Deaf. I filled out a bunch of paperwork, and we discussed the kinds of jobs I might be interested in. I still have to have my application for VocRehab services approved, but I don’t think I’ll have any problem there. [UPDATE: I'm approved! In response to an email I sent asking how long the approval process would take, Will wrote, "You are eligible for VR services based on the medical information that I already got from you. Clients who are interested in work and have a documented disability/employment barrier qualify for our services."]

All in all, it was very helpful to be working with Will and seeing how comfortable he is with himself and how empowered he feels. It gave me a lot of strength. Plus, the office is so spacious and quiet, and the people there are so friendly, that I felt pretty good by the time I left (taking into account, of course, how tired I felt from interacting with people in general).

So, there you have it. I’m seeing the reality of my life more and more clearly, but I’m not seeing what lies ahead. It’s a hard place to be standing. I’m hoping that I can get a clearer sense of how to shape the next part of my life.

© 2010 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

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

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

Here I am, sitting in my loft, seeing almost nothing but bright yellow leaves out my window. It’s a beautiful New England autumn day, and life feels very peaceful. A number of wonderful things have been happening.

Another birthday comes around
My beloved husband turned 65 this week, and he spent his birthday as he always does: taking a long walk and writing in his journal. When he turned 64, I reassured him that I would still need him and still feed him. And now that he’s 65? Hmmm…I guess I’ll continue to. I’ve kinda gotten used to the guy. And he is a really nice guy, too.

My new ASL tutor is wonderful
I began one-to-one ASL tutoring with a new teacher named Brittainy. She came over to my house on Monday afternoon, and we had a great time together. She’s a 30-year-old painter who teaches art at the school for the Deaf. She’s become progressively hard of hearing over the course of her life and learned ASL only five years ago. It’s very encouraging to be learning from someone who acquired ASL as an adult. She’s a very focused, enthusiastic teacher, and I’m a very focused, motivated student, so I’m very much looking forward to practicing my skills and learning from her. It feels great to have turned the corner from a class that didn’t work to a tutoring situation that does.

My book goes out for review
After revising my memoir for the third time, I finally decided it was time to show it around. I sent the book out for review to a few people—none of whom, I assume, see any need to reorganize it, delete half the text, or add an encyclopedia’s worth of missing information. (Yes, I’m staying optimistic. More on that later.)

My meds get reassessed
The background: I’ve been taking the same tricyclic anti-depressant for twenty-two years, and a newer anti-anxiety medication for about five years. While they still help, their effects seem to have diminished over time. In addition to feeling depressed more often than I’d like, I’d been noticing that just about everything in life was causing me anxiety, from stepping out my door, to talking on the phone, to grocery shopping, to trying to get to sleep at night. So, I made an appointment with a psychiatrist to discuss my medications, and I saw him earlier in the month.

During the appointment, I described my anxiety, and I told him how often I seem to “bottom out” into depression. After I’d recited the short history of my awful childhood, my memories of my parents, and the challenges of my newly diagnosed autism, he said, “The combination of your childhood trauma, a possible family history of depression, and your neurological wiring creates a condition akin to The Perfect Storm. There is no way you could put those things together and come out with anything other than anxiety and depression.”

I just about hugged him. Then, he prescribed Zoloft. I just about hugged him again. He said that the Zoloft would help with both the anxiety and the depression, and that I wouldn’t have to quit taking my other medications. I’d been very anxious about the prospect of having to go off my regular meds before starting a new one, so when he said it wasn’t necessary, I almost hugged him again.

In addition to my old meds, I’ve been on Zoloft for about a week. The effect is pretty amazing. At first, I felt nauseated and tired out, but that often happens when I introduce anything new into my system. After a few days, I started feeling good. It’s not as though all of my problems are solved, but disappointments aren’t laying me low as they once did, and I’m maintaining a reasonably optimistic view of things. Better yet, I seem able to accept the limitations of my autism without guilt, frustration, anger, or the whole wishing-it-were-otherwise syndrome. And that mask of neuro-typical perfection I used to hide behind? I can’t find it anywhere, and I don’t even care where I left it.

In short, I seem to be focusing on my strengths and accepting the rest. It’s been a long time coming.

I have to admit, though, that in the midst of all this wondrousness, I’ve been having the strangest feeling. I keep asking myself: What has happened to Anxiety and Depression, my constant companions? Where did they go? They’ve been around for so long that things feel strangely quiet without them.

I could live with that kind of peace.

© 2009 by Rachel Cohen-Rottenberg

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

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

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

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

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

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

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

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

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

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

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

© 2009 by Rachel Cohen-Rottenberg

My article on autism was published in our local monthly paper at the beginning of July, but it didn’t go live on the website until today. Here’s the link:

http://www.commonsnews.org/694/

Enjoy!

Rachel

© 2009 by Rachel Cohen-Rottenberg

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You are all an amazing lifeline.

© 2009 by Rachel Cohen-Rottenberg