My Private Face

I have two faces. Looking at my profile picture, I am coifed and painted. This is assembled for doctor's visits, teacher's meetings, and the occasional dinner out. In reality, this is who types the blog:

Two months ago, I would have been embarrassed of my scruffiness and filed this picture away. Now, I'm proud of my slightly combed, definitely unwashed hair. My lack of make-up reflects a sensible woman, and even my discount watch is a statement of pragmatism.  Around the house, I wear my regulation comfy clothes and simple hairstyles. Out there, I fret over appearing appropriate and agonize over details of my attire.  I do want to look pretty, but I don't  need to be squeezed and painted into attractiveness.

Rachel Cohen-Rottenberg's slide show inspired me to share photographs. One person's bravery can give courage to many. Seeing her childhood photos sent me on a personal expedition. What would I find? Although I started out looking through childhood pictures, I ended up focusing on my adult snapshots. I learned more about myself than I expected.  After the jump, a few more pictures for you!

Family Visit From Hell

Last fall we had the Family Visit from Hell. I had trouble coping with E’s mother (Tanya) being here. She came right when Tyoma's school started and she stayed for two months. Sigh.

Why Asperger's, Part One

It started in February, when I revived my Livejournal.

After Tyoma was diagnosed in 2009, I halfheartedly put in entries. Ultimately, writing in my journal seemed frivolous compared to my need to understand what was going on with my son. Instead of writing, I immersed myself into the study of sensory integration, Floortime, ABA, and RDI. I seemed unable to shift my attention away from reading, googling and getting the picture of what autism is. My internal resources were not spent on self reflection, which I considered a vanity.

Heh.

Serious Questions

My therapist brought up several issues that I have been contemplating for the past week. 

Me. Different Me

My gym visits are sporadic at best. The only time I routinely attended was at 5:00 in the morning.  The bliss of a whole gym glowing, but not bustling was precious and calming. I remember how much I enjoyed working out without distraction.  I would even shower and fix my hair, something I still must force upon myself. I'd glide through my morning and be gone before the first regulars arrived.

I have always hated being anywhere near the gym during classes. I might enjoy the "bumpa-bumpa-bumpa" of the music, but I could not bear the shouting of the instructor. I kept being pulled toward her commands almost as if I believed she was talking personally to me. Nerve jarring. The multitude of jovial chatting women waiting for classes began was a great thing to observe. I could often focus on cataloging them, organizing them. I have quantities of journal entries based on these observations. I think it was less stressful than the shouting instructor because they were far off and less intrusive.

But not always. It's a proximity and volume thing. Sometimes chatting people disorganize me.  It feels as if they are right in my face. Just to be cautious, I seek out the most remote exercise bike, away from the pounding treadmills and gossip factory by the sitting area.

Do you know what else distracts me at the gym? Mirrors.  Same thing when I was a kid.  My folks had mirrored closet doors and anytime I visited with them on their huge California king  bed, I'd stare at myself. "Whoa, look at me would you? I am so hilarious and amazed by myself! Hi! Hi, Lori!" Annnd, then the silly faces began. Mirrors got me more than a few time outs.

Maybe it has to do with faces. We do not have any photographs or representations of faces in our home, save for one hidded shrine to my grandmother. I always feelt that they observe me, it is infinitely distracting and disturbing.

Maybe mirrors got me into trouble not because I recognized myself , but because I felt alien the reflection.  Separate data streams. It's one thing to feel something and quite another to see it reflected visually.  The mirror was a giant puppet. Cause and effect. This smile inside makes that one there. It was so austounding that I could not think of anything else.

Now, I try to avoid mirrors--they invite me  to register every unsavory detail about my unwashed, uncombed self. When did this change? Hmmm. Good question.

At the YMCA, I know I can look away from mirrors. However, my morning gym schedule coincides with the special needs community's and we have some issues there. I embrace diversity, and I am not about to judge or condemn anyone for biological differences. But sitting on my exercise bike, next to a hooting-arm flapper is distracting. Partially because of irony. I am a variety of  hooting arm flapper myself.

Last week, I had the revelation a lifetime while cycling at the Y. "I am a woman with Asperger's," I thought. I knew. I realized!  Such joy surged through me! Involuntarily, I slapped my thighs and let out a whoop as tears started to fall. In an instant, I was back to myself, and looked around to smile at the world. I had startled the aging cyclist next to me. He shifted uncomfortably and would not meet my eager gaze.  Heh. I would have been mortified in the past. I wasn't then. It felt even sweeter, to be me. Different me.

Intense World Theory Of Autism

Aaaaand I'm off and running. I have pages of writing waiting to be transfered to computer and even pages on my computer waiting to make it to my journal. I was so excited over my birthday present (new laptop!) that I just had to find the perfect background picture for my header. And then the perfect font colors and so on.

Anyway, in my reading (Aspergirls) I found the perfect autism theory. It's called the "Intense World Theory." Naturally, I'm posting excerpts and re-phrasings and maybe some of my own personal musings. I'd like to mention that my father, who has Asperger's and is profoundly gifted described his world as being "ultra intense" with "light, colors and  noises so intense" that he couldn't think.  In his gradeschool classroom the clamor of students and the teacher was so overwhelming that he would rip pieces of paper out of his notebook and chew on them for relief.

I've written my own little stories which I will post later.

Self-Stimulatory Behavior, I Got It

Okay.  Deep breath.  I hope I can do this well.  I am writing about some of my little obsessions.  Watching my son, I have catalogued his quirks and oddities.  In video, photographs, and pages of text I have captures his essence.  Suddenly, I had an astounding revelation.  I too have pages of quirks and oddities to catalogue and disclose.  Here I go!

It all began with this link of characteristics of female Asperger’s traits.  Reading this list has been the single most awakening moment of my life.  I was very anxious over my fit with the male traits, many of which I do have, but some differences threw me.  It did not fit.  That’s why I sought out help.  My brand new therapist told me that women present differently, but I had never thought to have checked.

So I googled.  And here it is.  This chart is me.  Perhaps, for accuracy’s sake, I might not fit a sentence of two, but here I am.  Bless you, bless you, Rudy Simone.

I started reading the chart, saying, “Uh huh uh huh uh huh,” over and over again.  And then I reached the third column.  Midway down it read:

 “stims to sooth self when sad or agitated: rocking face rubbing, humming, finger flicking, leg bouncing, finger or foot bouncing”

And then

“Similarly physical when happy.  Hand flapping, clapping, singing, jumping, running dancing, bouncing around”

OMG.  Nothing I have ever read before was so accurate.

People who know me socially might not see or notice this.  I pace, rock, and flick, snap, flap and clap.  Many have commented on my leg bouncing.  “Spazz” was a school nickname, and actually a pretty good descriptor.  I could never understand why people were not totally jazzed about the things that made me happy.  If I got an A+ on an exam, I’d whoop and rattle my paper and look for someone to celebrate with. A fellow classmate and former best friend who also did well would look away and tell me to “Calm down”.

Nowadays, I still burst into song and make odd sounds when I am happy.  As I think about it, I don’t see others or even imagine others behaving this way.  As a child, I continuously made odd sounds.  I asked myself “why” for the first time today.  I savor the feel of the pressure and vibration in my mouth.  It is deeply pleasing and soothing.

My husband has grown accustomed to my happy dances and hand clapping frenzies, even when outburst of joyous expression lasts for ten or twenty minutes--that’s twenty minutes of “Blue-DUDE-blue-DUDE-DUDE-blue-DUDE DUDE!!!”  with a few raspberries and vigorous thigh slapping.  I am the only one I know who does this.  And I do it all the time.

I can’t imagine any of our neighbors doing this nor can I imagine them doing the finger dances I do when trying to organize my thoughts.  I have been repeatedly criticized in school and at home for my leg wiggling which can become reach startling amplitude.  It makes people flinch and stare.

At Southwest Counseling Center, my job was to help mental health consumers manage severe psychiatric illness.  I did well, but always fit in better with the consumers than the regular staff.  They valued me for my accurate note taking and ability to detect patterns in people’s behavior.  

Once I attended a treatment plan of a client I particularly liked.  I felt acutely uncomfortable with stone faced therapist “Mr. Jones”.  He was a stony-faced musty 1970’s Sears catalog sorta guy.  The client defended herself from his oblique criticism from therapist.  The kind of passive aggressive stuff that seemed too ill-tempered to be therapeutic.  I became distressed.  I did not want to be there.  I could not for the retort that came three days later.  

My agitation escalated.  Overwhelmed, I started rocking slightly and then I flopped over on the conference table, smooshing and rubbing my cheek against the cool melamine. As if my splayed out torso was not enough, my bouncing legs audibly rattled the table.  At some point I came back to myself, I sat bolt upright and bounced vigorously for the rest of the meeting.

Both therapist and client ignored what must have been a bizarre display.  The client, however, softened her tirade as if she knew and cared about my distress.  She basically agreed to whatever he said and the meeting was over quickly.  She never said a word about my “moment.” The therapist acted oblivious and aloof.  I took a disliking to him that has never dissipated.  I retired from SWCC six months later.

 What happened at that meeting?  I literally had no idea.  I've scratched my head over this for years.  Today, I know what happened.  The overpowering emotions got to me.  I liked the patient; I identified with her.  I knew she was off kilter but this therapist was not acknowledging her strengths, and I’d had quite enough of that in my life, thank you. I was torn between outrage and duty.

My emotions built to such a level that I could no longer physically restrain them.  The social brakes that tell me not to sing too loudly at JC Penney failed, and I had a little meltdown.  And I have been having variations on that theme for years.  Whew.  Time to take a break!

Therapist

Well, I did it.

Yesterday morning, I gulped a lungful of air and dialed the Asperger’s Association of New England (AANE).  A fellow named Max smoothly answered the phone.  I blurted out my story in a disjointed stream of consciousness monologue.

Autism Spectrum Questionnaire

Sure, I took the Autism Spectrum Quotient Questionnaire. I took it a few years ago, at the suggestion of a fellow blogger from Livejournal. Since  "eighty percent of those diagnosed with autism or a related disorder scored 32 or higher, " I was surprised.  I scored above 40. Naturally, I discounted the test, but not before passing it on to my parents.

Mom wouldn't even consider it at the time, but I recall that I unearthed several more diagnostic questionnaires, (which I am certain to gather and post) and passed them on. Annoyed, mom couldn't bother with something "dug up on the Internet."  She didn't want him to fret.  Heh.

Dad and I are very much alike. He would have fretted. And we did fret over Tyoma's diagnosis. Asperger's.

And now, I'm wondering. About the broad autism phenotype. About my sensory issues, social issues and failure to thrive when my intelligence should have hauled me through. I'm looking for data, lists, surveys, questionnaires. I am trying to take all the disparate and strange bits of information about my life, my whole life and put them into a big picture. I am seeing autism. Or am I? 

I doubt myself  fundamentally. Doctors said,  "Anxiety, ulcers, depression,  Epstein-Barr."  So what is it? Without knowing that both my son and father are on the spectrum, I would have never though about Asperger's.  I'd be googling my favorite stuff, organizing, and avoiding cooking.

I need some one to talk to about all this. Someone reliable and experienced. Someone who's seen aspies and won't dismiss me or lead me astray. Someone who knows the difference between "typical" and "autism spectrum." I need to know if this is what's going on with me and if not what can I do to manage my life with my son better. I'm desparate here. Life shouldn't be this hard.

Major Depression and Autism

This is a though provoking article I found on the relationship between depression/bipolar and autism in families.

We have an abundance of mental illness in our families. Depression, schizophrenia, and bipolar disorder seem to hit four out of five relatives in both my family and E's family. Very curious.

I suspect that some sort of neurological link exists. We know that depression and schizophrenia are manageable with medication. I suspect autism and "mental illness" might actually have some co-occrance and that the variation of manifesstations off autism and aspergers might result from the inteaction of a differently wired brain and plus variations in the levels and functioning of various neurotransmitters.

Could it be that our understanding of personality is not of a disease process,  but of a natural process created by gentic variation straight from our parents? Maybe.  It would be wonderful to relable "personality disorders" as some sort of a variation attributed to brain structure and processing.  For those who are social impared, or rather feel that there quality of life is impacted by their way of doing things ther could be wonderful news.  you could learn new ways of doing things more adaptive ways to funtion while at the same time maintaining your own specific gifts.  i think that this needs to be up to the individual to decide unless he or she is so impared that they present a danger to themselves or others.