Journeys with Autism

Archive for Communication

As I Said to My Therapist…

February 7, 2010 Rachel Autism-Literate Therapists, Communication

A few weeks back, I had a conversation with my neuro-typical therapist about the mysteries of neuro-typical socializing. Specifically, I was talking about strategies that Bob and I had been discussing regarding how to handle running into (no, not literally) people we know. For instance, every time that Bob and I have gone to the movies and run into folks we know, they have always tended to utter, in tones of apparent warmth and sincerity, words along the following lines:

“How ARE you? It’s so wonderful to SEE you! We should get together some time! We really miss you guys so much. You guys are so great. Good to see you!” And every time such an event occurs, my poor little Aspie brain believes every single word, even though nothing ever comes of any of these words. Ever. Ever, ever, ever, ever, ever. I truly fear these moments, because my poor brain can’t help but take the words literally, which means my heart can’t help but feel all warm and fuzzy, which means that I get all hopeful and happy, which means that I just get fooled again.

So, having described the gauntlet I have to run between getting my popcorn and finding my seat in the movie theatre, I said to my therapist: “What’s up with this? Why do people say these things and then not follow through?”

And he answered, quite matter-of-factly, “Well, people are open and engaging when you run into them, and they say all of these words, and everyone in the situation knows that the words don’t mean anything.” To him, it was so simple. He didn’t seem bothered or perplexed by this social ritual in the least. In fact, he described the situation in the same tone you might use to describe how to start a car.

I just about jumped out of my chair at the absurdity of it all. For a moment, I forgot that he was the all-knowledgeable professional and I was the socially inept Aspie. (It happens. Often.) So, instead of pondering his words thoughtfully, I launched into the following mini-diatribe:

“How the HELL can you people live like this? Do you think you have an unlimited amount of TIME on this planet? Do you not realize that life is too SHORT to fill it by talking all sorts of GARBAGE that you don’t really MEAN? I’m sorry to have to say this, but I am SO not the one with the problem here.”

He took it very well—by which I mean that he maintained his integrity as a therapist and looked at me in a benign and accepting manner. And then he said, “Our time is just about up for today,” and he wished me an early good Shabbos as he ushered me out the door.

He really is a very nice person, my therapist. I just don’t understand how he thinks. And he doesn’t understand how I think. It’s pretty interesting to try to translate back and forth across the divide, though.

10 comments

Some Thoughts on Autism and Bullying

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

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

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

Read on for details.

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

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

I hope that all is well with you.
Rachel”

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

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

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

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

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

Okey dokey.

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

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

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

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

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

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

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

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

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

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

Comments and hugs both appreciated.

9 comments

Cycles of Return: Staying Out of the Victim Place

January 7, 2010 Rachel Childhood, Communication, Spiritual Beliefs

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

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

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

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

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

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

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

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

Excuse me for a moment while my head stops spinning.

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

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

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

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

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

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

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

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

Dear Ralph,

A few days ago, I wrote that if you believed what I said about my childhood, you should write to me, but that if you didn’t, you should continue your silence. When you responded by saying that you didn’t have any basis for believing me or not, I should have stopped our communication right there.

I don’t have any physical evidence that proves anything I say, so if evidence is what you need, I’m afraid I can’t offer any. I have no medical records or reliable witnesses, no police reports or other testimony. All I have is my own truth, my own integrity, and an abundance of other people who believe me. Some of these people have never met me in person, and some haven’t seen me in over 30 years, and yet, they still believe me, and they still express compassion and support for me. And why not? What do they have to lose? Nothing. Absolutely nothing.

That’s what I need in my life. That’s what I’ve been trying to say.

Let’s end our communication here and wish each other well.

All the best,
Rachel

Now to me, that’s teshuva. I’ve gone through another cycle of the family craziness, and this time, I’ve come out sane. I’ve returned to my true self—not a victim, and not even a survivor, but simply a whole, decent, self-respecting human being.

10 comments

I’ve Got Those “Unbelieved Abuse Survivor” Blues

January 4, 2010 Rachel Childhood, Communication

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

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

Here is the letter I sent her:

Dear Ralph,

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

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

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

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

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

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

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

I never made such a threat. Ever.

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

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

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

Rachel

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

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

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

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

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

Dear Ralph,

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

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

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

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

Rachel

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

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

15 comments

Getting Off the Family Plane and Wafting Gently Back to Earth

December 30, 2009 Rachel Belonging, Childhood, Communication

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

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

Hi Ralph,

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

Rachel

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

9 comments

How This Jewish Aspie Survived the Christmas Season

December 26, 2009 Rachel Belonging, Communication, Judaism and Jewish Life, Sensory Processing Issues, Spiritual Beliefs

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

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

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

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

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

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

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

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

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

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

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

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

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

36 comments

When Our Hopes Get in the Way of Caring for Ourselves

October 11, 2009 Rachel Anxiety, Belonging, Communication, Empathy, Friendship

Virtually all of us have had the experience of letting our hopes blind us to what is actually going on. There are a few spiritually attuned people in this world who, more often than not, respond to exactly what is happening in the moment, but alas, I am not one of them. Like most people, I get derailed by what I want, by what I need, and by what I fear. And, like most people, I suffer the emotional consequences of the clash between my projections of what will happen and the reality on the ground.

As an autistic person, though, I find that the physical impact of letting my expectations get in the way of my better judgment is often profound. Since Thursday, I have been dealing with the physical impact of meeting with my nonverbal autistic counterpart (whom I’ll call Jenny) and the very kind neuro-typical man with whom she shares a home (whom I’ll call Joe). While there were many good things about our visit, I’ve allowed the good things to get in the way of noticing the impact of the difficulties. Since our visit, I’ve had intense and troubling dreams. I’ve woken up every morning with my heart racing. I’ve been on the edge of a migraine almost constantly. Today, I am finally figuring out that something went wrong, but only because my body has been screaming at me for three days to listen up.

So, I’m listening. What I’m learning is that my very tenacious mind ignored a long series of “uh oh” moments that might have helped me care for myself in essential ways.

Here’s how it started: The week before last, when we were planning the visit, Joe and I had some wonderful email conversations. He is a very good person who is trying his best to understand what Jenny needs, and his emails reflected that. However, there were signs that his hopes for the visit were beginning to get the better of him. I could see his very great need for respite and his very great desire for Jenny to find a friend. A little tiny voice inside me said “uh oh,” but I ignored that tiny little voice.

I know exactly why I did it, too: Joe’s need for the situation to work exactly mirrored my own. I very much wanted to make another friend, and I very much wanted to stretch my consciousness of what friendship means altogether. So, over the course of a week, Joe and I built a picture of what we hoped would happen, despite the fact that I had never met Jenny and she had never met me.

In his emails, Joe had described Jenny as being very easy-going and able to go almost anywhere without a lot of difficulty. On the day of the visit, however, Jenny was quite agitated. I could see it the moment they got out of the car. Joe said that she rarely becomes agitated, and that he wasn’t sure why it was happening. I thought perhaps it was just anxiety at being in an unfamiliar environment, but he said that she’d woken up jittery that morning. That little voice in my head said “uh oh” again, but I told it to be quiet and to stop bothering me.

As a result, I quickly overrode my own agitation and tried to be a welcoming host. I invited Joe and Jenny into the house, where Jenny began to move furniture and grab food out of the refrigerator. I was so intent on being welcoming that I discounted how unsafe I was beginning to feel. Jenny isn’t much taller than I am, but she is one strong woman with a very strong will. It was quite difficult to get her to move away from breakable pieces of my daughter’s artwork. The little tiny voice in my head peeped “uh oh” again, but to no avail. I wasn’t listening.

After a short time, we decided to go out for a walk. Jenny and I walked hand in hand, while Joe followed behind. I understood why Joe was there: he wanted to be sure that Jenny felt safe and that I could keep her safe. I kept telling myself that it was fine, but there was that threesome thing happening, and y’all know what happens to me in crowds of three. Uh oh. I was enjoying Jenny and our walk, but I was also getting overloaded.

When we got back, Joe seemed disappointed in the visit. I got the feeling that he’d been hoping that I’d seem more like Jenny, and that I’d be a kind of bridge between them. So, yes, wanting desperately for things to work, I began to articulate the ways in which Jenny and I were alike. At the same time, I was keenly aware of the fact that Joe viewed me as far more neuro-typical than autistic. And yes, that poor little muted voice whispered “Uh oh, and maybe you should keep your mouth shut now?” but there was no point in ruining a perfectly spotless record of ignoring every last signal to take care of myself. So, I tried to explain that I’m autistic and not neuro-typical, which meant that I was talking far too much, for no good reason, and exhausting myself in the process.

Will I ever learn that explaining myself does not work? (I’m aware that the question is beginning to sound rhetorical, and it concerns me.)

In any case, it’s pretty clear to me now why Jenny felt so agitated. Over the course of a week, the expectations that Joe and I were co-creating had become apparent and Jenny had picked up on them. Great expectations of an unknown situation would make anyone agitated, especially an autistic person who is acutely aware of what is going on around her. The fact that she couldn’t verbalize her discomfort doesn’t mean that she didn’t understand what was happening. I’m sure she did. I’m completely agitated by the whole thing three days later, so her agitation should not have come as a surprise to me at all.

Time to let go. This relationship will not work, despite everyone’s best intentions. That little voice whispering “uh oh” has become rather loud, I’m afraid. It’s now shouting things like “Am I not getting through to you?” and “If you keep on with this, you’ll get a full-blown migraine.”

After three days, I can finally say to myself, “Look, it didn’t work for you, and it didn’t work for Jenny. That’s really okay. Other good things are happening, so just keep moving forward.” My head still hurts a bit, but my heart rate is beginning to return to normal.

4 comments

My Autistic Life is Looking Up

October 5, 2009 Rachel ASL, Belonging, Communication, Community, Friendship, Happiness

You’ve all been so supportive of me in my grief and frustration these past few months, and it’s meant a lot to me. Perhaps I needed to bottom out a few times and cry a lot of tears in order to open up the space for better things to come into my life. I’m not sure. In any case, all kinds of very promising things have been happening for me lately, and I want to share them. While I’m doing my level best not to get attached to outcomes, I can’t help but feel very positive and excited.

Continuing Support from the Deaf Community
Karen, my contact at the school for the Deaf, continues to be an absolute gem. In every interaction, she listens to me, she thinks about solutions, she gives me thoughtful answers, and best of all, she keeps my spirits up. What’s more, she does it all by email. We haven’t even met in person yet!

As an example of what I admire about this woman, I’ll tell you how she responded when I described my auditory and visual difficulties with the ASL class. First, she said that she’d have no problem finding me an ASL tutor, but that she was concerned about the expense. She urged me to look for some kind of program that would help defray the cost, and she gave me a place to start. She also said that if I hit a snag, I should let her know, and she’d help me brainstorm further options.

Next, she suggested that I get specific information about what kind of volunteer help is needed in the school library. With my sensory sensitivities, she said, volunteering in the library might not work. As it turns out, she was right to be concerned. The library tends to be noisy and full of activity. When I told her what I’d found out, and asked whether she could suggest some other options for volunteering, her response was so insightful and so helpful that I could hardly believe my eyes:

“Oh yes I can think of volunteer opportunities for you! The challenge is finding you something where you control your own interactions with others, I think. The newsletter seems like it could be a good one because you’d be able to correspond mainly via email, control your level of input, and get to know people here at the same time. The drawback is that it’s not going to be a good bridge to you learning sign, because I can’t sign yet either. I’ll ask a couple other people for ideas too and get back to you.”

In a follow-up email, she had even more ideas for things I might do, and I’m excited about the possibilities. I won’t write about specifics at the moment; when we get something definite in place, I’ll let you all know how it’s going.

Meeting Up with Another Local Aspie
I’ve been feeling kind of sad about my relationship with my first local Aspie friend. Our sensory sensitivities and social needs are so different that it’s been difficult to figure out a way to hang out. She’s a great person, and we’ve been continuing our friendship by email, but we’re both disappointed that we haven’t come up with a strategy for spending time together.

Meanwhile, I met another Aspie woman in town who saw my article in the local paper and follows my blog. We got together this weekend, and somehow, we just clicked. The verbal pacing was right, our sensory sensitivities seem compatible, and we have some very specific interests in common. So yay! Another promising beginning.

Plans to Meet Up with Yet Another Autistic Person
In one of the many newsletters that find their way into our house, I saw a classified ad about part-time respite care for a 50-year-old, nonverbal, autistic woman. I wasn’t looking for a job, so I didn’t pay much attention to the ad, except that the words “50-year-old, nonverbal, autistic woman” kept running across my mental screen for weeks. I thought, “You know, I’d like to meet this woman. Why not respond to the ad and say so?” I wrote an email to the person who had placed the ad, explaining that I’m 51, that I’m autistic, that I navigate the world outside my home as though I’m deaf and nonverbal, and that I was hoping to make a connection with the person he’d mentioned in the ad.

Getting any response seemed like a long shot, since I really wasn’t responding to the purpose of the ad. However, I probably should have bought lottery tickets last week, because taking a long shot paid off in a big way. I got a response, and it was a very enthusiastic one, too. Apparently, the woman herself does not use the computer, but she likes hanging out with friendly people, taking walks, going to the YMCA, and so forth. She is in a shared living situation, and the fellow in whose home she resides clearly likes and respects her. Because I’m not driving anymore, he is willing to drive her up to my house when we meet. So I am very glad to have made this connection.

She and I will be spending a couple of hours together on Thursday. I am looking forward to it very much. I don’t feel any sort of anxiety about this new person, which is very unusual for me. When I meet people for the first time, I’m usually quite nervous. In this case, I suppose it’s the lack of social pressure that’s responsible for the happy sense of calm I feel. She and I aren’t going to talk with words, so I will have to find other ways to listen, to respond, and to communicate. Instead of making me nervous, the prospect sounds absolutely wonderful. It will be a challenge, but a good challenge, and something that I want to be able to do. My natural affinity is to people at the margins (no surprise there), and I’m learning to enjoy my own silence, so I’m feeling very optimistic about our time together.

So many possibilities! Good things are happening.

7 comments

Getting Off the Wheel: How to Be Autistic and Deal with It Already

September 27, 2009 Rachel Belonging, Communication, Friendship, Loneliness, Spectrum Pride

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

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

1. I am invisible to the average person.

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

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

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

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

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

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

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

2. Most people think I’m strange.

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

Quack.

3. I cannot connect with most people.

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

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

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

It didn’t work.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

30 comments

Arghh! Why Can’t I See and Hear at the Same Time?

September 25, 2009 Rachel ASL, Communication, Disabilities, Dyspraxia, Hearing, Sensory Processing Issues, Visual/Spatial Skills

I’ve been struggling in my ASL class, and Michelle’s comment about how visual input can affect auditory processing gave me some insight as to why. While my last post was about my auditory sensitivities overwhelming my visual sense, this post is about what happens when most of the stimuli are visual.

First things first, though: My ASL class, as it turns out, is not as quiet as I thought it would be. While the course syllabus says that there is no talking upon entering the classroom, people are still talking before class. When I asked the teacher for clarification, she said that she doesn’t feel she can ask people not to talk when they don’t know enough ASL to otherwise communicate. I was hoping that they could just be quiet and have the experience of how it feels to have to adapt, but alas, another of my great ideas is just…well, another of my great ideas. Anyway, with my earplugs and headset on, I can still hear people’s voices. I can’t hear words, but I can hear what sounds like undifferentiated noise, and it wears me out before the class even starts. Were I to show up right at the beginning of class, however, it wouldn’t make much of a difference. The teacher jokes around a lot, so there’s a lot of laughter, and it’s quite distracting. Most of the time, I feel exactly as I do in the rest of the world: I wonder why everyone else is making noise when I’m trying so hard to concentrate.

But the problem isn’t just sound. It’s the fact that being in a room full of people is very disorienting. Even if the room were silent for two hours, I’d have all the visuals of people moving around, using their hands, gesturing in nonverbal ways, expressing things with their faces, and thereby distracting the living hell out of me. In the class, I have to focus very hard just to communicate and respond to the simplest signs in the language—signs that I can easily use and understand when I’m watching my ASL DVD, or showing Bob or Ashlynne what I’m learning. I need more structure, more quiet, and fewer people in order to learn and to use what I’m learning.

Unfortunately, the class feels very unstructured and chaotic to me. The description says that we’re supposed to be learning Units 1 through 6 of the book we got, but we’re already three classes into a 12-week course and we’re not even all the way through Unit 1. When I asked the teacher about the homework after the second day of class, she said that she doesn’t give homework, and that we should just study the material in the book on our own. Then, when I asked whether we could use signs in class that we’ve learned from the book, she said no, because not everyone will have learned the same signs. She only wants us to use the signs that she’s taught us in the class so that we can all learn them together.

I understand what she’s trying to accomplish, but my brain doesn’t work that way. I have to learn things outside of class in order to really understand how to do them; I can’t just pick them up from watching her once a week and remember them when I get home. There is far too much in my visual field for me to be able to discern what I’m supposed to remember. And of course, once I get back to class, I can’t remember what signs she’s taught and what signs I’ve learned from the book.

And then there’s my moderate dyspraxia. I have a lot of trouble watching, imitating, and sequencing moving visuals, and ASL is one long series of complex visuals. While it’s a beautiful language, and I love learning it, I’m also finding it very challenging. When visuals are static, I can focus on them to my heart’s content and see all kinds of patterns and colors. When visuals are moving, it’s very difficult. I can get there, but it takes time and work. I’m willing to put in the time and work, but I need a different learning environment. The present one isn’t working for me.

I finally understand why Aspie kids need IEPs and one-on-one aides. I need educational supports at 51 that just aren’t there in a regular classroom. I’ve emailed my contact at the school about finding some other way to learn and practice ASL. Perhaps someone would be willing to tutor me? I don’t know. Wish me luck!

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