Archive for Spectrum Pride

Same World, Different Neurologies

July 17, 2009 Rachel Communication, Spectrum Pride, Volunteer Work

I’m about to say goodbye to my idea of volunteering at the local school for autistic youth. The reason? I’ve tried several times to articulate what I need in terms of how to structure my visits to the school, and I don’t feel like I’m being heard.

When I first wrote to the school, the person who answered the email seemed very enthusiastic about having me volunteer there. The hard part for me was the fear of getting overwhelmed by going to the school, meeting the teachers, watching the program, and then deciding how to proceed, all in one day. Thanks to the advice of my friend Sue, I decided to see whether I could break the meeting times into smaller pieces. Since my contact person had said, “We’re flexible and completely willing to meet your needs,” I felt confident about telling her exactly what I needed regarding my sensory issues. On June 24th, I wrote:

“The best way for me to proceed is to do things one at a time. So, perhaps
one day, I could come in and meet with you to talk over what your needs are
and how I can help. Then, another day, I could meet with Carol, or observe
one of your summer programs. If I try to do too much in one day, I’ll get
overloaded.

In general, one-to-one conversations work best for me, especially when I’m
meeting new people in a new place. Once I get to know people, and they get
to know my strengths and challenges, I can talk in a small group. It’s
work, but I can do it.

I could come in some time next week to talk with you or Carol. Would
Tuesday, June 30th work, in the late morning? Except for Friday, my
schedule is fairly open right now.”

I didn’t hear anything back at all for more than two weeks. As Crystal mentioned in response to a previous post, neuro-typical people sometimes get distracted and forgetful about things, but they don’t realize that we Aspies often need an answer one way or the other so that we can get on with our lives. That’s how I was feeling. I didn’t want to write again after I’d been so clear, so my husband offered to call the school and let them know that I needed an answer. The woman he spoke with was very apologetic and said they’d be willing to have me do whatever I’d like.

So, I wrote to my contact person again about setting up a time to meet, and this was part of her response:

“I think the best thing is for you to meet with me briefly and  then  observe so
you can see how we’re set up, so you have a better idea of what you’d like to do to volunteer. I’m open for anything that works for you!”

I know that this person is well-intentioned and very busy, but her response bore very little relation to what I had earlier said.  She says she’s open to anything that works for me, but she’s not responding to what I actually said would work for me. What I needed was to sit down with her and discuss what the school’s needs are before I observed the program.

Despite  my growing frustration, I decided to go on the assumption that she is too busy to meet with me separately from my tour of the school. Based on this premise, I took a different approach: I suggested that she tell me what the school’s needs are by email. Here’s what I wrote yesterday:

“Before I come in, I’m wondering whether you could send me an email with a
list of things I might be able to do as a volunteer. Having something to
think about ahead of time would give me a framework for observing your
program. When I’m walking into a new situation, I always do best with some
kind of structure.”

Could I have been any clearer? Here is a portion of the response I received this morning:

“It’s hard for me to give you a lot of information since we’re really flexible on
what people want  to do.  You could basically do anything. I honestly think you’d do
best if you came  in to visit with me…and then took a tour of the facility. That way,
you could see the students and  assistant educators in action and could get a feel
for the flow of our school. “

There are three problems here:

1) I don’t do well with being told that I can basically do anything I want. I need specifics, and I made that clear.

2) She told me what she thought would work best for me. I really dislike that, especially when I’d already told her what I know would work best for me.

3) She suggested that I come in, meet with her, and tour the facility on the same day. That’s precisely what I said I did not want to do.

I feel really sad. I don’t see a way to continue this conversation and get what I need.  We’re obviously talking at cross-purposes. I am trying to get her to do something she doesn’t want to do, and she is trying to get me to do something I don’t want to do. I don’t see a way out of this impasse.
 
© 2009 by Rachel Cohen-Rottenberg

14 comments

Activities of Interest in the World of Autism

July 16, 2009 Rachel Community, Girls and AS, Spectrum Pride, Women and AS

Autism Corps: USA

Over at Squidalicious, there is a movement afoot to create an Autism Corps, a federally funded organization to train volunteers to work with autistic children and adults. I’ve just joined up to help get the work going.

The Autism Corps petition describes the proposal in more detail. If you feel so inspired, please read it and add your name to the list.

World Inaugural Seminar on Girls and Women with an Autism Spectrum Disorder: Australia

Sponsored by Asperger Services Australia, this seminar will take place on Friday, August 7 and Saturday, August 8 at The Holiday Inn, Roma Street, Brisbane. The keynote speakers are Professor Tony Attwood and Dr. Michelle Garnett. Among the guest speakers is our very own Camilla Connolly. (Go Camilla, and thanks for the information!)

© 2009 by Rachel Cohen-Rottenberg

One comment

My Article in the Local Newspaper

July 15, 2009 Rachel Diagnosis, Spectrum Pride, Women and AS

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

14 comments

My 100th Post: A List (Aren’t You Shocked?) of 100 Myths about Autism

July 5, 2009 Rachel Myths about Autism, Spectrum Pride

You are now reading my 100th post!

To celebrate this milestone, I’ve decided to publish a list of 100 myths about autism. I was going to make a list of 100 things about myself that you didn’t already know, but I figured I wouldn’t have enough material. :-)

100 Myths about Autism

1. Autistic people are never creative.

2. Autistic people are never imaginative.

3. Autistic people are always good at spatial tasks.

4. Autistic people cannot empathize with others.

5. Autistic people can never have intimate relationships.

6. Autistic people can never be good parents.

7. Autistic people can never have friends.

8. All autistic people are highly intelligent.

9. All autistic people are unintelligent.

10. All autistic people are nonverbal.

11. Autistic people who are nonverbal have nothing to say.

12. Autistic people who are nonverbal cannot otherwise communicate.

13. Autistic people who are nonverbal cannot think.

14. Autistic people cannot love.

15. Autistic people belong in institutions.

16. Autistic people have no emotions.

17. Autistic people can never work for a living.

18. Autistic people just aren’t trying hard enough to fit in.

19. Autistic people are never interested in other people.

20. Autistic people do not need community of any kind.

21. Autistic people can never acquire new skills.

22. Autistic people can never lose existing skills.

23. Autistic people cannot reflect upon the mental states of other people.

24. Autistic people don’t make eye contact because they don’t care about what people have to say.

25. Autistic people are always logical.

26. Autistic people are overly emotional.

27. Autistic people are insensitive.

28. Autistic people are too sensitive.

29. Autistic people are empty inside.

30. Autistic people need pity.

31. All autistic people are like Rain Man.

32. The real Rain Man is autistic.

33. All autistic people are like Temple Grandin.

34. Autistic people cannot be happy.

35. Asperger’s Syndrome and autism are two separate conditions.

36. People with high-functioning autism have it easy.

37. People with high-functioning autism are not like other autistic people.

38. People with high-functioning autism are just socially awkward.

39. People with low-functioning autism have no quality of life.

40. People with low-functioning autism have low IQs.

41. Autistic people are a burden on society.

42. Autism is caused by poor parenting.

43. Autism is caused by vaccines.

44. Autism is a mental illness.

45. Autism is a disease.

46. Autism is a disorder.

47. Autism can be cured.

48. Autism should be cured.

49. Autistic people should be removed from the gene pool by pre-natal testing.

50. All autistic people are hermits.

51. All hermits are autistic people.

52. All autistic people think in pictures.

53. Most doctors understand autism.

54. The autism experts are always right.

55. The autism experts are experts on autism

56. Autistic people do not understand autism.

57. Autistic people should believe everything the experts say about autism.

58. The loved ones of autistic people should believe everything the experts say about autism.

59. The general public should believe everything the experts say about autism.

60. If you don’t believe what the experts say, you must be autistic.

61. If you can understand what the experts say, you cannot be autistic.

62. If you understand metaphor, you cannot be autistic.

63. Autism is a walk in the park.

64. If you have a sense of humor, you cannot be autistic.

65. If you can tell a joke, you cannot be autistic.

66. I love being autistic! It’s a blast! All the time!

67. I hate being autistic. It’s a bummer. All the time.

68. Autistic people are all alike.

69. Autistic children could “behave properly” if they really wanted to.

70. Autistic children “misbehave” because their parents enable them.

71. Autistic people do not work hard to get through the day.

72. After all, how hard could it be?

73. Autism is just an excuse to be insensitive and lazy.

74. Autistic girls do not present differently than autistic boys.

75. Autistic women do not present differently than autistic men.

76. Autism Speaks speaks for me.

77. Autism Speaks speaks for all autistic people.

78. Autism Speaks has autistic people on its paid staff.

79. Autism Speaks has autistic people on its board of directors.

80. Autistic people are puzzles with missing pieces.

81. Autistic people are broken and in need of repair.

82. Asperger’s is just the latest trendy diagnosis. 8)

83. Having a trendy diagnosis like Asperger’s makes you popular.

84. Autistic people can never be athletes.

85. Autistic people are always clumsy.

86. All autistic people are completely incapable of eye contact.

87. Autistic people cannot carry on a conversation.

88. Autistic ways of being are inferior to neuro-typical ways of being.

89. Autistic points of view are inferior to neuro-typical points of view.

90. If you can make a YouTube video, you are not autistic.

91. If you can publish a blog, you are not autistic.

92. If you can post comments to a blog, you are not autistic.

93. If you don’t have an “official” diagnosis, you are not autistic.

94. If you can read this list, you are not autistic.

95. If you are reading this list, you must be autistic.

96. Myth #95 has just saved you a ton of money that you would otherwise have spent on an autism assessment.

97. Logic dictates that you deposit a small portion of the money you’ve saved into my PayPal account.

98. I mean it.

99. I am not kidding.

100. I will finish the list now because my autistic mind craves order and consistency.

101. Oh, what the hell, here’s one more.

102. Being on #102 in a list of 100 myths about autism isn’t driving my autistic mind crazy.

103. Being autistic, I always know when to stop.

104. Always.

105. Really.

106. Like now.

107. Or maybe not.

108. No one minds that I’m on #108.

109. It bugs everyone that I’m on #109.

110. I don’t care if it bugs people.

111. I have no problem ending this list on an odd number.

112. The fact that this list ends on an even number is a mere coincidence.

© 2009 by Rachel Cohen-Rottenberg

26 comments

Why I Can’t Do What I Used to Do

June 29, 2009 Rachel Aging, Anxiety, Diagnosis, Marriage, Spectrum Pride

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

© 2009 by Rachel Cohen-Rottenberg

13 comments

Thinking Locally

June 28, 2009 Rachel Autism-Literate Therapists, Belonging, Communication, Community, Happiness, Spectrum Pride

A few weeks back, when I decided to let go of my activities in the outside world, I had a feeling of wanting to start from my home base. I didn’t have the energy to make the hour’s drive to Massachusetts to see my OT, and I needed time away from the store to figure out how to be there without feeling like an NT impersonator. My only remaining outside commitment was to see my AS-literate therapist in New Hampshire every other week.

After my third visit to the therapist, I decided to stop going there, too. I liked the therapist very much. She was warm, attentive, and very encouraging. But the 35-40 minute trip to her office in New Hampshire felt like too much of a stretch. The drive made me feel lonely. Here I was, driving to the next state, to an unfamiliar place, to a town I didn’t live in, to get support for how to live my life back home. It made me feel desolate.

As I’ve let go of these activities, I’ve been happy to be at home much of the day, able to follow my internal rhythm, without the pressure of having to go anywhere at any particular time. I’ve been able to work in the garden, growing flowers and vegetables. I’ve been able to eat in a healthier way, and I’ve been getting exercise every day. I’ve even begun work on my book.

The more time I spend at home, the more I’m reminded that Bob and I didn’t buy a house in the center of town for nothing. We like being able to walk everywhere. We like leaving the car at home. So, it became clear that whatever I do with my life in the outside world, it has to happen locally. I have to find a way to stake my claim to the town I live in and find a place where I can be myself.

As it turns out, my decision to stay local is already bearing fruit. As I wrote last week, the manager at the thrift store told Bob that she had distributed my “coming-out” article to everyone on the staff, and that everyone was fine with it. On Friday afternoon, she sent me the following message by email:

“It has been so busy at the shop and we miss you terribly. All the staff have said is, ‘When is she coming back?’ So, please come back when you can and we will do whatever we can to accommodate your needs and to make you comfortable. We appreciate your thoughtful nature, your kind and generous spirit, your clarity, your beautiful presence. We honor your journey…come share it with us. Our very best wishes to you, my dear. Let us know how it goes. Hope to see you soon.”

Is that amazing, or WHAT? I forwarded the message to Bob, and before we lit the Shabbos candles on Friday night, he read it aloud at the dinner table. We both had tears in our eyes.

So now, I am thinking that I will start by working at the store for an hour, one day a week, just to see what I can do and how to make it work for me. I will probably end up going there more often, just to look around, because it’s a friendly place and they have lots of neat stuff there. I really love thrift stores, and it’s one of the friendliest and most interesting ones I’ve seen.

The next step is to make a time to meet with a staff person from the local school for autistic youth. I emailed my contact person last week, but I have not heard back yet. In any case, I feel good about the way that I’m managing the process.

Thank you to everyone for helping me find my way along this path.

© 2009 by Rachel Cohen-Rottenberg

8 comments

On Being True to Myself

June 26, 2009 Rachel Anxiety, Belonging, Communication, Community, Spectrum Pride

Once again, I’ve come around to the issue of how to be true to myself.

For most of my life, I’ve made a practice of emulating other people in order to know how to navigate. I’ve been so single-mindedly focused on getting it “right” that when things go “wrong,” I feel like I’ve messed up. But, in truth, I don’t mess up any more than anyone else on the planet. So why does it feel that way?

The feeling derives from an old, false belief that something is amiss inside me. Of course, when I’m thinking clearly, I know that nothing is amiss at all. I’m autistic. That’s neither good nor bad. It just is.

But I still feel divided, in a couple of ways.

1) I am firmly grasping myself by the hand and bringing myself out into the open, while at the same time, my old conditioning is kicking in and saying, “You’re doing WHAT? Hide that person!”

Now that I’ve peeled off the masks, I can see how my life experience has taken its toll on my self-esteem. All the times that I’ve been bullied, rejected, laughed at, or shunned have made their mark. And yet, miraculously, I can see that there is nothing wrong with me. When people have been cruel, it was all about them and their blindness. That’s all. So I hear the old conditioning that tells me to hide, and I say, “Well, I’ve taken your advice for half a century, and thanks for trying to help, but it’s time for you to retire.”

2) Who exactly am I, anyway? Exactly where is the line between being my wonderful, loving autistic self and pretending to be someone I’m not? Where is the line between holding onto my power and letting it slip away?

After all, I have social skills and I feel fine using them. The problem arises when I use them and pay absolutely no attention to the voice of my neurology ringing me up and saying:

Hello? Yes, I know you have social skills, but I’m getting tired…Yes, yes…of course…I know being at the store is fun…Yes, I know, but it’s been a couple of hours, and I really need to go home.

If I tune into my neurology and give it the respect it deserves, I’ll know when I’m in danger of crossing over from enjoying myself to driving myself. The problem is, how much is too much? Do I leave at the first warning sign of overload, or do I push myself a little further? I’m not sure. The answer to these questions is still a work in progress.

I feel as though I have a foot in each world—the ASD world and the neuro-typical world. I’ve got neurological wiring that makes me autistic, and I have autistic friends I’ve made online, but I also have relationships with people who are neuro-typical, and I value those relationships. I have to be able to navigate between the two. Doing only one or the other is out of the question. But how?

I’m not sure. I certainly can’t keep going with the image of having a foot in each world.  It makes me feel like I’m nowhere. But I’ve been meditating on another image, an image of threading myself through the outside world while being aware of what’s going on inside me. Sometimes, that inner self will be communicating with other autistic people, which generally feels easy to me. And sometimes, that inner self will be communicating with neuro-typical people. At times, I find it very easy to talk with neuro-typical folks, and sometimes, I find it immensely difficult. It all depends upon the person, the nature of the environment, and the state of my sensory system at any given time.

What’s most difficult is the knowledge that I have to be prepared for other people’s fears and misconceptions. If “coming out” didn’t mean running up against everything from complete acceptance to out-and-out ignorance, it wouldn’t be so difficult. The one thing I badly need to avoid is talking to people endlessly, hoping that if I throw enough words at them, they’ll understand. I don’t have that kind of energy anymore.

As far as I can see, if I want to throw a little light on the subject of autism, I have two options: I can write, and I can be true to myself. I think I’ve got the writing part down. Now I can get on with the task of being true to who I am.

© 2009 by Rachel Cohen-Rottenberg

5 comments

The Waiting Game, Part II: Help! Did I Screw Up?

June 21, 2009 Rachel Anxiety, Communication, Spectrum Pride, Volunteer Work

I’ve done it again. I’ve gone and spoken the truth, and now I’m wondering whether it was such a good idea.

Not that I would prefer lying, mind you. But I know that on the continuum between Telling the Truth and Lying Your Face Off is a vast, uncharted wilderness called You Know, You Don’t Have to Say Anything At All. It’s a place that I’ve been, many times, but I never feel quite at home there. I inevitably pack it up and head in the direction of Telling the Truth.

In the month of June, I’ve not only reached the land of Telling the Truth. I’ve also bought a house there, planted a garden, run for mayor, and used a megaphone to inform everyone of The Truth About My Life. I did it all quite consciously, knowing that it might not, er, work out as I’d hoped. The problem is that I don’t know whether it’s worked out or not. I’m still waiting to find out.

I hate waiting. I think I’ve mentioned that before somewhere.

So here’s what I did:

Submitted an article
June 7: I submitted a Viewpoint article to my local paper about my Asperger’s diagnosis and the top 10 worst myths about autism I’ve had to excise from my brain in order to keep my sanity be a proud and happy autistic person. The article will go onto the paper’s website some time later this month, and it will appear in the July issue of the paper, which can be found in various places all over town. I wrote the article in order to a) come out as an autistic person locally, b) advocate for autistic people, and c) let other autistic people in town know that I walk among them.

Given that the article hasn’t come out yet, I’m shaking in my shoes thinking, “Can’t I just go back to thinking I’m neuro-typical-and-neurotic instead of autistic-and-eccentric? It’s not too late to get the toothpaste back in the tube. Is it?” Then, I realize that yes, it’s too late to turn back now, and the shaking-in-my-shoes thing gets a little worse.

Wrote to an old friend
June 11: I wrote to an old friend from high school. The reason I made this stupid move decided to email him is that I was looking over a set of pictures he’d taken of me as a graduation present in 1976. I was looking at them because I was getting started on my book, and I needed to put all the pictures in one place. So, I wrote to him, and I told him that I was writing a book and had found all the pictures. I wanted to let him know that I still had the pictures, and that they mean a lot to me. It was a very short, friendly email.

On June 12, I got a really nice response, in which he was very excited to hear from me, had added me as a friend on his Facebook page, wanted to know what I’d been up to, and asked me about my book. (I’ll bet you know what’s coming, don’t you?) He also said that he’d love to see some of the photos. So, the same day, I wrote him back, told him about Bob and Ashlynne, where we live, what we do with our time, and yes, that I’m writing  a book about my life-with-Asperger’s-Syndrome-a-high-functioning-form-of-autism-and-that-learning-about-my-AS-has-been-a-great-blessing-in-my-life. I also attached four of the photos he’d wanted to see, which I had on my computer because I’d put them in a blog post.

I’m still waiting for the response that I know will never come. I used to put my foot in it and mention being an abuse survivor. Now I’m doing it with being autistic. But, hell, when people say “Hi, how are you, tell me about yourself and what you’ve been doing,” I can’t just say, “Hi, I’ve been doing just fine, I go to church every Sunday, and my life has been bliss.” I just can’t. I can’t, I can’t, I can’t. I don’t know whether it’s my brain or my heart or some evil demon who possesses me when I write emails to people I haven’t seen in 30 years, but I can’t help it. I have to tell them Who I Really Am.

It tends to put people off. I don’t get that. Yes, I know, there’s this whole little stupid social dance thing I’m supposed to do, but life is short and I have no interest in dancing around the truth.

Sent an email to two local people
June 17: I sent a copy of my “coming out” article to the store manager and volunteer co-ordinator at the store. I had emailed them previously, telling them that I needed to take some time off. They each sent me beautiful emails, and the store manager said that if there was anything they could do, I should ask. I had decided before I wrote my reply that I couldn’t go back to the store without coming out about being an Aspie. I’m sick of hiding. I just can’t do it anymore. So, when I sent my email, with the article attached, I told them that I really missed the store and that I wanted to sit down with them and figure out how I could best help out there.

Now, I know that a lot of people don’t read their email everyday. I also know that the store manager isn’t there every day, and that the volunteer co-ordinator just had a baby and is working reduced hours. I also know that maybe they need some time to digest what I wrote. My husband has reassured me that everything will work out, because they already love what I do there and finding out about my autism won’t change that. My therapist said exactly the same thing. Given that both Bob and my therapist are very down-to-earth, sensible people, I know that I should listen to them.

I also know that if the response is negative, it will actually be a good thing, because at least I’ll know that I should put my energy elsewhere. But I don’t want to put my energy elsewhere. I would really like to be at the store again. I miss it.

This waiting is so hard. I’ll keep you posted.

© 2009 by Rachel Cohen-Rottenberg

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Now You’ve Done It!

June 19, 2009 Rachel My Books, Spectrum Pride

Go ahead, twist my arm. Suggest that I write a book. Like writing isn’t something I have to do, just to keep myself from spontaneously combusting.

You know who you are, you seemingly innocent blog friends. You’re the people who keep dropping little hints about putting the story of my life into print. One suggestion here, another idea there, and before you know it—I’m actually writing a book. About my life!

The book will be a memoir, and I’ve asked a friend to handle the design. She designed my last book and did a beautiful job. As on the last go-round, I’ve decided to go the self-publishing route. I briefly considered the idea of sending my little masterpiece-to-be to a publisher, but I’ve decided against it. I don’t like the idea of some neuro-typical editor-stranger messing one iota with the product of my feverish autistic mind.

Yes, I like control. And independence. Haven’t you noticed?

Anyway, thanks everyone. :D

© 2009 by Rachel Cohen-Rottenberg

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Giving Autism an Equal Place at the Table

June 4, 2009 Rachel Communication, Marriage, Spectrum Pride

My husband and I had a great conversation yesterday about how to integrate autism into our lives.

The conversation began as a way of strategizing how I can best handle my husband’s absence when he travels. As we discussed the issue, a light went on, and I realized something very important: I still see my husband’s neuro-typical way of dealing with the world as “normal.” And for years, I’ve tried to emulate him. 

And why not? After all, what’s not to like? He’s very diplomatic. He’s very sociable and enjoys talking with people, as long as there is some actual content to the discussion. He has a very serene way about him, even though on the inside, he doesn’t always feel that way. He’s loving, he’s flexible in his thinking, and he knows how to walk away from a situation without telling everyone how wrong they are.

And me? Diplomacy? Oh, goodness. To give you an example of my diplomatic skills: One day, as we were standing on our porch, we saw one of our new neighbors go the wrong way on our one-way street. I immediately assumed that she’d done it on purpose. Bob thought that because she’s new, she’d probably forgotten about how the traffic flows. Anyway, I freaked out about it, because all I could think of was my daughter driving home and finding my neighbor’s truck coming at her. Once an image comes into my mind, it’s very difficult to forget.

So, I asked my husband if he’d speak with our neighbor about it. He said he would, but because he hadn’t met her yet, he wanted to introduce himself, have a friendly conversation, and then remind her about which way the traffic goes. So, each day, I’d say, “Did you talk to her yet?” And he’d say, “Well, she hasn’t been at home when I’m at home, but I’m looking for the opportunity.”

After a few days of this routine, I started to get really impatient and said, “Why don’t you just go down the street and tell her not to drive the wrong way?” 

He laughed and said, “Look, I have my own way of doing things. I’m not going to do it your way: Hi, I’m Rachel. F**k you.”

I laughed, because I know what he means. I don’t generally say the F-word to people, but I know that I come across as though I do. To tell you the truth, I don’t really understand how that can be. I’m just a little intense, you know? I don’t do the social dance that comes before the content. I just start with the content, keep going with the content, and finish with the content. People seem to take it personally. Who knows why?

For years, I’ve been trying to figure out how to do these sort of things differently. I’ve been trying to emulate my husband in all kinds of situations. In fact, I’m pretty sure I’ve tried to emulate every friend, every partner, and every colleague I’ve ever had. The other person is substantial and inherently worthy, and my job is to get into sync with all that substance and inherent worthiness.

Not surprisingly, it leaves me feeling like a second-class citizen.

So, as we were talking yesterday, I realized that I don’t have to emulate anyone. My autistic perspective is just as valid as any other. My autistic way of going about my daily life is just as worthy as any other. My autism has to have a full and equal place at the table, every day. I cannot shove it into a corner. Why? Because it’s a pervasive condition. It’s already in every corner.

So here’s how bringing autism into the center of our lives helped us deal with the issue of my husband’s travels: Every couple of weeks, my husband goes down to New York for a few days to see his dad. He generally leaves on the same day that my daughter goes to her father’s house. It’s a very big, difficult adjustment for me to be here without them, but I slip into my Aspie hyper-focus at some point and dwell there in solitude. Then, after a couple of days, my husband comes home, and I feel like I’m just supposed to drop everything I’m doing, ask him about his trip, and somehow enter the land of “normal” again.

And, the truth is, I want to be flexible and drop everything. But my brain doesn’t work that way. If he gets home and I’m working on a project, I can’t just drop it. Clearly, I can put something down and keep my hands from moving, but in my brain, I’m still working on the project, and it hurts to be in two places at the same time.

It’s been difficult for my husband to leave me at home when he goes to New York. He feels very torn. I totally support him going to see his dad, and he knows it, but he also knows how difficult it is for me to adjust to his absence. And I feel torn as well.

I finally realized that the way to free both of us from this conundrum was to let him know that the only thing that’s more difficult than adjusting to his absence is having to do a quick turn and re-adjust to his presence.

So, I told him that when he comes home, it’s important that he realize that I’m on my own schedule and in my own rhythm. It will take me a while to finish whatever I’m doing. It’s really important for both of us to remember that our brains work very differently, and that I take a long time to do transitions.

The fact is that I’m very happy when my husband comes home. His presence is so comforting and so reassuring. But I still need to wind down from Aspie solitude into our Aspie-NT relationship. Once I wind down, I can go downstairs, and we can be together, each of us in our own experience.

Now, that’s something to look forward to.

© 2009 by Rachel Cohen-Rottenberg

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