Saturday, June 23, 2012

With one voice...

In my home are myriad compartments. Bins for the kids' things. Drawers sorted by function. Boxes with labels in the closets. I am a master organizer. I find great joy in taking chaos and turning it into a filing system.

My last post revealed something to me. I tend to overdo it with the compartments.

I took that and ran with it in my mind. I recognized how this has hindered me socially. Not only do I lose track of myself around others, but I also see myself in compartments, rather than one complete person. I do not automatically integrate the different parts of me that make me who I am.

I clearly remember being in fourth grade and seeing some of my classmates turning ten. "Double digits" was a big deal. I remember having a touch of fear in the pit of my stomach. I enjoyed being nine, and it looked fun to be ten, but was I ready for double digits? With a summer birthday, I didn't have the rest of the class watching me as I turned a year older. They would have to see this new person in September.

On the day of my tenth birthday, I looked in the mirror. Nothing looked different, and I didn't have a tidal rush of sudden new interests. In fact, I liked the things I had liked the day before. I had the same face, the same hair, and the same thoughts.

"I'm double digits... but I'm still ME!"

It reads like a cliche, but it really did surprise me. And, as charming is it is to have those sorts of thoughts as a child, I find I have carried that same element of surprise into my adulthood... only now, I don't consciously realize it.

I limit myself to my compartments. I organize myself neatly. But I don't integrate.

When I worked, I was an employee, or a coworker. When my first daughter was born, I was "Mom." When I go to the grocery store, I am "a shopper." When I used to go to hockey games, I was "a fan."

In none of those did I consider myself "Aimee." In fact, "Aimee" was subordinate to each of those titles.

Only now do I see that it was meant to be the other way around. "Aimee" can be many things, and "Aimee's" aspects carry over as a whole into all settings.

I have found myself saying as much. Take my daughter's First Communion. I wanted to have a nice dinner for friends and family afterward, but found it difficult to plan. "How am I supposed to be Mom and Aimee both?"

Likewise, as I revisited "Undercover Aspies," I realized another part of being discovered in an unexpected context is not being able to access that part of me that belongs to that other setting. If I am at the library, I am wearing a "library patron" label. The compartment holding all of my "Aimee, the friend" aspects is at the bottom of the stack and can't be accessed without a lot of work.

I compare it to celluloid. Instead of seeing an integrated self, maybe I see myself in individual layers of celluloid. I'm not completely self-blind, but I see only one layer at a time. If I overlay each layer on top of the other, I get a three-dimensional, full-color picture. If I peel apart each layer individually, I get a series of one-dimensional outlines, none of which really resemble me. And yet, I do that each time I limit myself to my context. It's as though I experience myself a sketch at a time, and never experience the fullness of my entire being.

Huh. This makes so much sense.

So much, that I have taken a long look at myself, and realized that I have done that even here.

Why in the world do I need two blogs?

Well, let's see. I started out a year ago with a gnawing hunger to write about my experiences. I felt I could help translate why I do what I do so that the rest of the world won't keep getting misfires and unclear signals from me. My quietude does not mean I am aloof. My crossed arms don't mean I am defensive. My lack of tears does not mean I am not grieving. My reluctance to use the phone is from my frustration at trying to communicate without any visual cues, not because I am avoiding you.

At the same time, I had an interior epiphany. My Aspergers is not a handicap. My Aspergers is not a defect. It is the means by which I may be instructed in living a better life. I have Aspergers, and many of my destructive and self-defeating habits stem from my own lack of understanding. Some of this is willful and some is unconscious. But once I become aware of it, I have the ability to make it conscious, and to eventually quell the anxiety or anger that can hinder my growth as a person. I can embrace who I am and teach my children to be their best selves by my example.

Before I ever knew the word "Aspergers," I was a Christian. I was on my way to discovering the Catholic faith. I wanted to follow in the footsteps of the holy ones throughout history who have left their imprint of hope and love in a world that lacks both. I freely chose Catholicism as an adult and received the sacrament of Confirmation in college. I believe this path is the one that will lead me toward God and will teach me how to be of service to Him. I believe my faith will teach me, cleanse me, guide me and sustain me. I already believed this at that point in time when I finally pieced together the fact that my lifelong oddness was well described by the clinical term "pervasive developmental disorder."

My day begins with, ends with and is infused with my faith... whether I spend that day cleaning house, buying groceries, writing dissertations, counseling clients or explaining pervasive developmental disorders on the blogosphere

So why, then, do I have two blogs?

What if I only had one?

Hmmmm.....

That runs the risk of being awfully authentic, doesn't it.

At first I thought I was trying to split the two concepts, one to explain myself to the rest of the world and one to express myself from the heart.

Why can't I do both at once?

Now I see that I didn't split anything on purpose, but rather, I started with compartments (or individual celluloids) and hadn't bothered to overlay the two to give -- and, get -- a fuller image of myself.

And so I am closing out Aspie Ambassador. I love the idea of it, and I will keep the posts around because there is no sense in deleting them until the internet finally runs out of parking spaces. I'm just not going to update it anymore. "Aimee" has Aspergers, and "Aimee" has consecrated this to God. There is no reason the fruits of my musings can't be expressed in their full form, rather than peeled apart as separate layers.

I will have one last post after this one, simply giving my other blog address. Do keep reading if this interests you. Aspergers is Aspergers, whether on this blog or any of the other fine Aspie support pages. If you are interested in my point of view, I will continue writing about it in my more fully integrated voice. "By Aimee O'Connell" should mean just that... and will.

Saturday, June 9, 2012

Revisiting "Undercover Aspies" - and all aspects of treatment

I am admittedly blog-hopping these days, with each of my two blogs serving to balance the other. One weaves in the spiritual elements, one tries to stay practical and direct.

On my "Autism Consecrated" blog, I proposed using the term autoagnosia in reference to that blurry sense of self which I feel is a common root of Aspergers, Borderline Personality Disorder and OCD... or, as I called it, "BOA."

If that holds true, there should be some concrete examples to help explain the concept.

I'm still trying to decide if autoagnosia is a stem, with all three disorders sprouting forth like separate leaves... or if autoagnosia is a single condition which changes three different colors, depending on environmental conditions, like a chameleon.

In the next few posts I hope to find practical ways to make the case for autoagnosia, starting by revisiting my own work.

Scenario, taken from my August, 2011 post, "Undercover Aspies:" My daughter is on school break and out with me and her younger brother and sister. We are at the town library enjoying a program they are offering on exotic animals. Suddenly, my daughter jumps out of her seat and runs to the back of the room. I gather the other two children and go back to see what could have startled her. Is she afraid of the animals? She won't say. She just begs to go home. Meanwhile, the other two are impatiently trying to get back to our seats before they miss seeing the parrot do its tricks. Finally, I realize one of her schoolmates is in the audience, and she is terrified of being discovered.

Previous post's explanation: It takes a painful amount of mental work to juggle the faces we've taught ourselves to wear in different contexts. If we see someone we recognize, we have to quickly switch gears from "relaxing" to "appropriate face." We find it hard to adjust our behavior that quickly.

How this reflects the traditional model of autism therapy: Therapists hone in on the anxiety with which the person with Aspergers grapples. The prescription has been to recognize our anxiety, then employ strategies to manage and reduce it so that we can function as well as our peers do in that setting. Repeated exposure, rehearsal, social stories and preparation ahead of time are ways that therapists teach people with Aspergers to be less anxious the next time a situation like this arises.

Explanation, under the lens of autoagnosia: My daughter has a blurry sense of self to begin with. In social settings, she struggles to distinguish her SELF from the image of others around her. When she is in a room of unfamiliar faces, it is easier for her to experience her SELF because she does not focus on any one person. Her body feels at ease and produces "contentment" chemistry in the brain. Then, when she discovers a familiar face, she is jolted into a state of question. Is she her SELF enjoying the exotic animal show, or is she obligated to match the person she recognizes... that is, must she project her "school SELF" now because she sees a schoolmate? Which is her identity -- library patron, or second grader?

Part of the problem is how rigidly Aspies compartmentalize our thoughts. I wonder sometimes if this isn't partly why Aspies love trains. The image of a train is very much symbolic of the way we organize our concepts and beliefs. Our ideas may go together, but we keep them in separate boxcars which line up and don't overlap. If there ever is any overlap, we panic like there has been a derailment.

----------------------

So, back to the discussion. Has current autism therapy reduced Aspie anxiety to the spectrum disorder itself, stopping there because autism is a fixed condition which, like congenital blindness, can be accommodated but not cured?

A person has autism... which makes them highly anxious in unplanned situations... which is treated by teaching the person how to manage and reduce anxiety.

What if we insert autoagnosia into that sequence, making it look like this: A person has autism... giving rise to autoagnosia... which makes them highly anxious in unplanned situations... etc.?

Maybe that opens the door to treating what causes the anxiety in the first place. While it is important to know how to manage the anxiety so we can function normally, what if that anxiety could be uprooted, rather than sprayed after it sprouts?

In re-reading my "Undercover" post, I am unhappy to see how plainly I accept the need to switch faces. Why shouldn't I? I've done that my entire life! But doesn't that perpetuate the underlying problem (autoagnosia)? I have been taught for years how to fit in across different situations, and I've learned the motions... but never felt satisfied in them. I know when I am my SELF and when I am mimicking.

Teaching me what to do in order to fit in has helped me succeed. Smile. At the cost of my SELF. Scowl.

Why should my daughter have to wear different faces in different settings? Why can't she just be her SELF in every setting? "Because, that's what Aspies do"? That answer isn't good enough for me anymore. We can do better.

At the end of this discussion, I am not going to stop teaching my daughter what is appropriate and what is expected of her. I am also not going to stop teaching her how to cope with her anxiety. But, I am going to think and think until I come up with a useful way of helping her identify and express her true SELF, and to do it in every situation... before she adjusts her behavior... before she manages her anxiety. Her choice to cope has to flow from her SELF, not as a mirror image meeting the expectations of her mother, her therapist, her teachers or anyone else.

Saturday, May 19, 2012

"BOA" Constrictions

Spot check: Where are we, in terms of this concept I have been trying to paint?

My last post discussed prosopagnosia, the neurological condition where faces (identities) do not stick in a person's memory, making other people blurry, and causing much anxiety and misunderstanding.

Recall, also, my "three rings" theory, that there are substantial similarities between Borderline Personality Disorder, Obsessive-Compulsive Disorder, and Autism Spectrum Disorder -- so much so that I would say each label represents a different angle from which the same core problem is clinically viewed. I have opted to combine the three and call it "BOA," and what an interesting image that makes... both a snake that chokes the life out of you, and a dramatic accessory that makes a bold statement. How true a reflection on the behavior of those with the diagnoses it stands for: dramatic, bold, fun, and potentially suffocating.

Each aspect of BOA [BPD, OCD, ASD] has a common root: the inability to define and retain one's sense of self. We chronically feel misunderstood, unseen, and unheard, leading to our "disordered" thoughts, fears and actions.

Here is how I would describe BOA clinically.

The cognitive-psychological profile of someone with BOA tends to be higher in academic skills (particularly strong vocabulary, memorizing facts and using logic) but lower in processing spatial tasks, mind-body coordination and abstract concepts. Although language skills are often superior, we have difficulty speaking. It is maddening. We write fluently but speak with great hesitation. If our entire life were spent typing, we might feel fulfilled and understood. However, since so much depends on our ability to speak on command AND convey our feelings and thoughts out loud, we feel trapped... blocked... too slow to keep up... frustrated. Angry, over time. It is easier just to let people read our diaries than to try and express ourselves orally. But, in life, who takes time to read the volumes we write? And who slows down long enough to let us spit out our thoughts? Who is patient enough to endure the silence while we think of what we REALLY want to say? Instead, we learn to echo back quick responses that suit the situation, rather than speak as our true selves.

Social-emotional measures would likely show difficulty navigating the nebulous world of interpersonal relationships. Yet, intra-personal knowledge (i.e., insight about ourselves) is likely very high. We know ourselves keenly, but can't seem to apply that knowledge in real situations.

Self-esteem in someone with BOA is dreadful. We dislike, even despise ourselves -- sometimes because we are teased or ridiculed by our peers, but more often, it seems like we are born with self-disdain. We hold ourselves to standards of perfection and constantly fall short. We are looked upon as high achievers but never enjoy the success we attain; we feel undeserving, or we dislike the attention we receive, or we think we could do better. People praise us for being so smart, but truth told, we often would rather be happy in our own skin than on the high honor roll. Much of this is rooted in our inability to speak quickly or accurately.

What problems does BOA cause? Social difficulty (withdrawal or stormy relationships), trouble gaining independence, a general sense of unhappiness. Mostly, people don't ever get to know who we really are. They hold misconceptions or false images of us. Part of that stems from our unconscious mimicry, our social shape-shifting, our constantly trying to say the right thing quickly instead of taking the time to be true to our selves. Part of that, too, is the inability of "typical" people to comprehend our neurological differences. That roller coaster really is a death trap to me, no matter how much you bawk-bawk-bawk to convince me I'm too scared to have fun. The cover band playing on stage while everyone talks at the bar makes it impossible to hear myself think (which is hard enough for me in quiet social settings). I don't like it, but that doesn't mean I don't like you. And yes, I can go to hockey games and scream at the top of my lungs and enjoy the bang-bang of the plexiglass and the blast of the air horns when my team scores, but I still don't like trying to talk to you when we go out afterward to that place with the loud band. Screaming at the hockey game is not the same as trying to shout over bad music. (Now, if it was music I like, and you didn't try to talk while I listen to it... I might just go to that bar with you.)

When we prefer silence, or retreat for awhile to regain our sense of self, or decline your invitations, or take a few minutes to answer you... it's not personal. It's how we compensate for our deficits.

When we feel like you don't like us, it hurts. It stings. So does criticism, no matter how accurate it may be. It reinforces our internal sense of imperfection. To get better, we frequently try to make ourselves more like you, so that you (or our teachers or supervisors or managers) will like us or approve of us. But then our anger builds. We AREN'T you. We don't want to BE you. But we find ourselves trapped by that image, and we resent having to keep up the charade. After awhile, we may even break off the relationship, if only to give ourselves a chance to be ourselves again... alone.

People with BOA who have been clinically identified as Autism Spectrum are taught by well-meaning therapists how to "blend in:" people expect this in this situation, and that in that situation. We do need this information, since it might not come naturally to us. We do need to know how to act in different settings. But are there therapists who teach us how to be ourselves, too? Because we really don't know how. We are in there, and we want badly to come out and just be, but we don't know how. Where are the therapists who can teach us those skills?

I'm thinking there is much potential to be had in taking the strengths of those with BOA and applying them toward rehabilitating the weaknesses. What if there were a therapy teaching people with BOA how to reroute their language skills from writing (our strength) to speaking just as fluently? The only time I can "hear" my true voice is when I write. Rarely when I speak.

Are there therapists who acknowledge our true inability to retain ourselves in memory? Who out there, clinically, realizes that people with BOA mentally blend into the people around us? It is as literal as that: We scan our environment and define ourselves based on the behavior in front of us. We can't distinguish our identity because we can't keep it in memory ---- we have interior prosopagnosia! Our minds accidentally observe and encode YOU where our selves should be, and that's where the trouble starts. The more people in any given setting, the more confused we are as to WHO we are. Are there any therapists who believe me? Other than carrying a mirror with me everywhere I go, how can I learn to remember myself when I am with others?

Last question: Can "typical" people believe that people with BOA need concrete [the ASD element] and frequent [the OCD element] reassurance that we don't fade from the minds of the people who care about us [the BPD element]? It's not that we are insecure because we WANT to suffocate you, it's that we genuinely don't know if you will forget us... and, because we feel so deeply about you, that if you do happen to forget us, it would hurt us to our core.

These are my questions... as a clinician, and as a client. I will share more about my personal search for answers on my sister blog, Autism Consecrated.

Tuesday, May 8, 2012

What is this thing called Prosopagnosia?

What is this thing called "prosopagnosia"? It's one of those mid-level Jeopardy words, and a rather disappointing play in Scrabble (being mostly vowels and single-point consonants). Its origins aren't all that obvious, and when you realize what it means, you probably can't comprehend it.

"Prosopagnosia" is translated by the medical community as "face blindness." I'm going to leave most of the work up to you if you want to research the particulars. For my purposes, I need you to be familiar with the term, and to understand what it's like. And, to believe that it exists.

Face blindness does not mean you can't see a person's face. Other people don't look invisible or pixelated like they do on the news broadcasts to protect the identity of an eyewitness. The term is kind of misleading. We see you just fine, but we can't remember your face after we part ways. It's more of a face-memory-blindness.

It seems hard to believe. Maybe you have seen the feature on CBS' "60 Minutes" on this phenomenon, or have heard about it in a college class, or are looking for a quick dump for all those Scrabble vowels in your tray. But I think it is important to be familiar with prosopagnosia, because I have a proposal that people with autism spectrum disorders deal with this phenomenon more than the scientific community realizes.

I can write about prosopagnosia because I have it. I never knew I had it until very recently, and I am almost 39 years old. The problem is, I don't have it with everyone. So far, to my knowledge, I am only face-memory-blind toward one person. I can honestly say I'd probably get flack from the scientific community for being such an odd case. After all, aren't neurological disorders supposed to be all-or-none, not selective? I admit, I don't have the answers. But I am telling the truth.

If I close my eyes and you say the name of a celebrity, or a member of my family, or a former coworker, I can readily imagine what that person looks like. I could give you enough of a description so that you could then identify a photograph of that person. And yet, there is one person whom I cannot "see" in my mind's eye. I have a nebulous concept of that person when you ask me what he looks like, and I could give you basics -- eye color, hair color, approximate height -- but I can't "see" him in my mind. I can "see" loads of other people, mentally, but not him.

This particular person has been in my life for almost 30 years. We didn't become friends until twelve years ago. Any time we got together, it was under very predictable circumstances, such as meeting at this place at this time. I never thought twice about it. We fell out of touch for a little while, then reconnected, and still, I didn't give anything much thought... until he complained about his appearance. He has had substantial medical challenges and pharmaceutical side effects that have changed the way he looks, or so he said. I brushed him off, not believing him, mainly because he didn't look any different to me than he looked 30 years ago. He didn't even look that much older. Hmpf, what, is he fishing for sympathy? Lots of luck, buddy, I wish I looked as young and healthy as you do!

A few weeks later I saw a group photo. Some faces I recognized, some I didn't. My husband pointed our friend out to me. "Come on," I said, "that's not him!" Oh, yes, it was. He looked completely different. Had I seen him out in the community, without having made plans to meet up with him, I would have easily walked past him. It irritated me. That's just not possible.

It triggered a memory from years ago, again, involving a photograph of this person. I had kept a newspaper clipping with his picture in it from awhile back, and once, a few years later, I showed it to my mother ("hey, look what I found!") She didn't know what she was looking at. The clipping had faded significantly and the reverse side of the newspaper had bled through to the front, blurring most of the words. I showed her where my friend was pictured. She only saw a bunch of backwards letters. I couldn't believe her. He's right there, for pete's sake, how can you miss him?

I wondered if it was possible that I can really be friends with someone and not know what they look like. So I did my own mental test, just as above. Close my eyes and recall images of different people. Bing, bing, bing. I can see their faces in my mind's eye.

Then, him... and...

I don't see a face. Oh, I see him in my mind's eye, just not a face. And I struggled to put words to it. It's... an essence.

I reminded myself of his facial features, which I still can describe, and realized I can only do it a feature at a time. In my mind, I can see his eyes... I can see his nose... I can see his grin... okay, then, integrate it all into a face... and it's gone.

It completely fascinates me. I even timed it once after we got together one afternoon, and I could clearly recall his face for an hour and a half. After that, he was gone. Only his essence remained. It was like trying to focus on a blurry, moving target in the dark. I knew it was there in my mind, I just couldn't hone in on it.  How is it physiologically possible that I can't integrate and recall his face? And how is it that it's only with him?

Aha... well, how would I know? What if there are other people I can't "see" and I just don't realize it? I lead a fairly predictable life. I encounter the same people again and again, most of the time. When I run into someone out of their usual context, I admit, it does throw me for that moment. I get a rush of anxiety, then I frantically add up clues -- hair, voice, height, who is this person? -- and I usually get it right. But, what if it's only my powers of deduction? What if I really can't remember them without all these clues to help me? How would I know? I mean, doesn't everyone have that problem? Doesn't everyone get caught off guard when they see their boss at the grocery store, or something like that?

It has given me much to chew on.

The strict textbook definition of prosopagnosia is the inability to recognize faces. I know there are people with prosopagnosia who are 100% face-blind across the board. Is it scientifically possible that people can have partial prosopagnosia, such as with my case?

Is prosopagnosia something we should associate with autism spectrum? Certainly, it stands to reason that people who have trouble with eye contact have trouble encoding faces into memory. Or, maybe we avoid social contact because it makes us so anxious not to recognize people we know we should. Maybe people with ASD have partial or full prosopagnosia and feel that same unrest all the time as typical people feel only when in unfamiliar territory.

And... is there such a thing as self-blindness?

Do I recall what I look like? Can I give you a description of myself?

On a deeper level, do I recall MY essence? Or is it a fleeting, blurry concept, like when I try and recall my friend's face?

More will follow, in the near future, on my sister blog, Autism Consecrated.

Wednesday, April 11, 2012

My three rings


And now it's time for a brief interlude.

Are you an Aspie?  Do you love one?  Do you WANT to love one, but aren't sure you can reach past the protective walls?  Do you want to break out of the fortress you've lived safely in for most of your life?

I don't have anything to sell you but an idea.  Visualize this diagram of overlapping circles (a Venn diagram for those of us who demand 100% accuracy in labeling): Three circles, interlocking like the Olympic logo.  On top, Aspergers.  On the left, Borderline Personality Disorder.  On the right, OCD. 

In the center of this diagram is a little flower where all three overlap and interlock.

I am already professionally convinced that this is a true conception.  I have enough evidence to propose that these three separately classified diagnoses are, in fact, interconnected. 

Actually, I think they are all the same thing.  I think the circles should be stacked, not overlapped.

Right now, in the professional community, the three rings in my diagram are large and intersect in only a small space in the center. 





In my mind, the picture is much more like taking all three rings and slowly moving them toward each other in the center.  Rather than having three rings with a tiny intersection at the center, I see them as three rings mostly overlapping, with small individual outlying areas along the edges. 



If you can imagine these rings drifting slowly toward each other until they are almost completely merged, the center space grows into a large common center.  THAT is where treatment comes in.  In my opinion, these three "separate" diagnoses have a large common root, and that root can be treated singly.  One comprehensive treatment for three huge rings of chaos.

"Treatment," in this case, is not some swath from a detached professional making assumptions he or she can only understand academically.  The "treatment" in my model is a frank acknowledgment and mutual understanding of the suffering that takes place as a result of that root cause of all three.  "Treatment" would allow those of us living at the center of my diagram to quell the fear that holds us hostage and fully embrace our selves with purpose and comfort.  It would, ideally, allow the onlookers we keep at bay to understand why we do what we do, and maybe even forgive us long enough to build bridges across our interior moats.  No guarantees it would be easy, but like a good workout is supposed to do, it takes all of our energy and pain and applies it toward our health, strength and increased capabilities. 

It all goes back to Theory of Mind.  It is amazingly simple once it makes sense, and from my perspective, it is the blast we have been looking for to open the fortress doors inside our barricaded Aspie/Borderline/OCD selves.

Key phrase: "once it makes sense."  That's my next job: take all of this and make sense of it in plain English.  Oh, you can bet I'm working on it.  I have been for about six weeks now, and I'm not going to stop until I have something coherent that even I can understand!



Wednesday, March 14, 2012

Theory of mind continues.

"Theory of mind" is a complex topic by itself. It's a major challenge to understand academically. Applying it in real life with our children and loved ones is mentally grueling, at least for me, and I've got a Masters degree in school psychology. Yet, now that the bulb has gone on (and finally stayed on), I see how important it is to grasp this concept if we want to connect with anyone on the spectrum.

If I weren't on the spectrum myself, I don't think I could get it. I might understand, but only on a textbook level.

If I boiled down my theory-of-mind-deficit into plain English, I'd say it like this: I can't quite trust my senses, and I'm not sure that I exist in your mind. It only bothers me when I have an emotional investment at stake, and then it makes me feel as anxious as the infant who cries like her mother is lost forever whenever she steps into the next room.

I haven't cried like an infant since I was, well, an infant. I've matured with my chronological age and I have learned to cope with my odd instincts. But sometimes they can make things really difficult.

We all know how cute it is when babies play peek-a-boo and how they marvel at the "magic" of your disappearing out of sight, only to appear again. Duck behind a book or room divider, and you vanish. Then, poof! There you are again! The same goes for toys. Put them under a blanket, they are gone forever. Yank the blanket away, and presto! Back into existence! Babies are so taken with this that they gasp and giggle. In actuality, their minds have not developed enough to internalize the fact that people and things stay in the world even when we can't see them.

Babies learn over time that people don't vanish out of sight, and that people remember them even when they are gone. Sometimes there are bumps in the road, such as when a parent goes out with long hair and comes home with a short bob. I just did this to my poor two-year-old about a month ago. She was not at all happy. "HEY!" she yelled with a furrowed brow, and pointed to my hair. "WHERE HAIR?" When I smiled and asked if she liked my haircut, she angrily said, "NO! MOMMY HAIR LIKE THAT!" and pointed to the family portrait over our mantle. It made me remember when I was about her age and my father shaved his mustache. It absolutely terrified me. He sounded like he should, he acted like he should, but his face was so different... was it really Daddy? I wouldn't let it rest until I was absolutely sure.

Kids on the spectrum have these normal developmental experiences like everyone else. They learn that people come back after they leave, and people stay the same even if they look different -- although the learning curve may take a little longer. Kids on the spectrum can't trust what we see, hear, smell, taste and feel as often as you can. Sometimes we are in the sensory equivalent of a carnival house of mirrors and our interpretations are distorted. The playground slide you see looks exactly the same to us, but your brain concludes "All clear, have fun!" while mine says "Warning! Safety hazard!"

We feel like we are constantly battling the world around us because our peers and the adults in charge don't believe that it's as loud or dangerous as our brains tell us. And... we can't fully comprehend how YOU think. Enter: Theory of mind.

So now we have two consequences of a theory-of-mind-deficit. First, from last post, is that we copy the people around us so well that our sense of individuality gets blurry. Now, second: We can't comprehend how you process information.

In the most obvious examples, we end up looking thoughtless and selfish. We don't always stop and think about how our actions will affect you.

But the more subtle implications of having a shaky theory of mind impact our relationships with an undercurrent of insecurity. I know by now that you still exist even after you disappear out of my line of vision. The problem is, I don't know if *you* know that *I* exist after you leave.

Logic calls this a no-brainer. For me, it's a "brain strainer." Do you *really* remember me when I'm not there?

I'm taking this to a literal extreme to illustrate my point. I don't truly think I cease to exist after you leave, but if you can imagine how drastically that might worry an unenlightened child, it does explain lots and lots of frustrating, irrational and potentially alienating behavior on behalf of some of us on the spectrum... in childhood, AND in adulthood.

Stay tuned.

Tuesday, March 6, 2012

Social echolalia

"Echolalia" is a familiar trait of autism where people on the spectrum repeat back exactly what you say to them. Brothers and sisters do this sort of thing all the time to irritate each other, but among those with autism, it can be the only way they communicate verbally. Those on the higher end of the spectrum don't show this pattern as much as those who are more severely impaired. The thinking is that echolalia reflects miswiring deep within the speech center of the brain which prevents us from accessing words to use in conversation. We recognize that conversation demands a response, so we copy what we hear in a sincere attempt to reciprocate. In a sense, we are practicing conversation skills at the most basic level, the same way we might repeat words spoken to us in a different language to see if we have heard and understood correctly before attempting our response.

Most Aspies don't show classic echolalia. We tend to be more "hyperlexic," meaning we pick up and use vocabulary extremely quickly. Aspies are usually the kids who read well above grade level and use technical terminology at a young age. Rather than being mute, we can sometimes talk on and on! We don't have trouble pulling up words, for the most part.

Being on that vast autism spectrum, however, Aspies do indeed have our own expression of the echolalia trait: we are gifted mimics. We have extremely good memory for dialogue. We can fluently recite movie lines, television commercials, famous speeches and all minutiae in between. We are the types who don't forget song lyrics and absolutely MUST correct you when you get them wrong. (Asterisk: We DO frequently MISHEAR song lyrics due to our auditory processing issues, which can get prickly for all involved when we stubbornly insist that our fudged-up version is more correct than your actual version).

Aspies take echolalia to the next level. Instead of repeating words literally verbatim, we pick up quickly on social behaviors and copy them. Social echolalia is recognized by experts as a very real condition whereby we socialize by mimicking the others around us. The result is a nearly undetectable smokescreen of fakery. People who are socially echolalic are quite successful and look perfectly normal. The problem is that we are so good, we pass for acceptable, and yet we barely get past the surface in most interactions. Or, when relationships turn more complex or intimate, we lose our footing quickly. We can tread water but not swim. As the social waters rise, we either flounder with an obvious social gaffe, or we panic, make a quick excuse, and get out of the pool altogether.

Just as repeating words verbatim only gives a superficial appearance of conversation, social echolalia looks great but feels hollow. I speak firsthand. I've only become aware of this recently, and the only thing that makes it easier to admit is realizing that it's part of the clinical package and not something I've done on purpose. Cold comfort.

For starters, I have never fully claimed myself as an individual. I exude great confidence only under the context of the role I play to someone else (daughter, coworker, student, mother). Much as that serves me well professionally, my projected image floats atop an undercurrent of sadness, loneliness, unworthiness and shame. I feel like nobody ever knows ME, and since they already know my "role" and like that "face," I am ashamed to step out from behind the curtain. It's not ME they know, it's my mimicry of what someone in that setting should look like. How do I admit that I have withheld a big part of me? Doesn't that make me a fraud?

Yes, to some degree, we all do this from time to time. Who among us doesn't survey the territory of an unfamiliar setting and adjust their behavior according to the majority? If you go to a dinner party where everyone is talking about current events, I'm sure you chime in with your opinion, even if you don't normally think much about that topic. It's what people do in new situations. Well, we Aspies do it all the time. Every situation is as baffling to us as one new situation is to you. Even familiar ones.

I can't tell you how many times I've left a dinner party feeling hollow and ashamed because I've spent the entire evening being a chameleon. Before I can even think, I transform my tone of voice, my expressions and my interests. I'm mostly bored with sappy movies, but if I'm in a group of women sighing over the romantic tear-jerker du jour, I find myself saying "awwwww!" right along with them. Then, when I go home, I feel like I've just lied to my friends. Nobody pressures me to fake it, and I don't even realize half the time I'm doing it until I've already started. By then, I'm too embarrassed to change back into myself, so I keep up the act until it's over with. More interior shame. More feeling like a shell instead of a person.

Of course, now that I'm aware of my social echolalia, I need to BECOME conscious of when I slip into it, and learn how to stop. I am trying a very simple strategy: claiming my name. As I speak to others, in person and on the phone, people I know or receptionists whose names I will never catch, I am pausing beforehand to consciously make sure it's AIMEE who is speaking on my end. What is Aimee like? What does Aimee think?

Sounds a little absurd at first, but for me, it gives me a sense of grounding I don't ever remember having.

I'm going to continue working on this for awhile. And, as I parent my own dear Aspie, I will throw in a few words of encouragement here and there to make sure she learns to stop and look at herself... to know who SHE is... to recognize herself as an individual, not just a blended color on the social palette.



For the academic types, research on Theory of Mind in persons on the autism spectrum comes into play here. It has long been known that those with autism have a genuine deficit in the ability to distinguish themselves from others or be able to intuitively know what other people might feel or think. Those of us on the higher functioning end of the spectrum, i.e., those of us who look more like everyone else, suffer this same problem with greater subtlety. What I've described here in my own journey fits well into classic autism's problem of Theory of Mind, in that I have unknowingly spent most of my life defining myself based on the people around me, rather than distinguishing myself. If only that were more obvious, it may not have taken me 38 years to get to this point!