A Paradox & an Oxymoron

A Paradox and An Oxymoron

PARADOX
For females (especially fully grown ones), diagnosis for autism is tricky because autistic females don’t present the same symptoms that their male counterparts do. Most of the research on autism has been done with boys in mind, and much of the evaluations until lately have been developed for the boy model. A fully grown Asperger woman has had years to cover up the autistic traits that got raised eyebrows when she was young. It is a paradox that her chameleon abilities force her into a life of misunderstanding and misjudgment; her short-spurt adaptability makes her appear normal enough (for those times at school and at work, where people are likely to notice her most) so that decades later, when she cannot function as her put-on self and finally cries for help, nobody has funds/attention for someone who can appear normal, even if normal is a facade.

OXYMORON
I’ve never wanted to be an oxymoron. But when the clinical psychologist interpreted my evaluation at the testing center that I had chosen for autism screening (I pictured dirt clods of varying sizes, from big clods down to dust particles being sifted—which was I? the big clods or the powdery bits?)  I realized that I am in fact an oxymoron. She informed me that I was “VERY intelligent” This is a huge relief because I thought I had lost all my marbles. I’ve bounced so many checks, missed so many appointments, forgot what day it was, left burners on (repeatedly), gotten lost innumerable times even in my own town, just now figured out that I have been manipulated by many people I’ve trusted, and just last week realized that I have only one genuine friend. I’m so glad I’ve got some smarts left.

“You have what’s considered mild autism,” she continued. “You may see it referred to as High Functioning Autism (HFA). That’s because your intelligence is high, especially your verbal IQ.” She pointed to a bell curve on a printout and scribbled numbers past the second cusp of the bell. But here, in executive function and social interaction, you scored well below average for your age-” Tap-tap before the upslope of the bell. “So you are very high functioning in one area but very low functioning in another. What you have to do,” the therapist said, “is to use your smarts to figure out how to work around these lower functioning areas you have.”

So I’m high functioning – low functioning. As I thought about this conundrum (the challenges of all people with “high functioning autism”), I realized that for all practical purposes HFA is an oxymoron. I find this fact to be slightly humorous, word lover that I am. So I thought I’d continue the theme and write about other autism-related oxymorons.

Act naturally.
This oxymoron is what many of us on the spectrum try to do, learn to do to an extent, and end up hurting ourselves because we do it so well, at least in public or for finite stretches of time.

Alone together.
To many of us, this oxymoron is very pleasant; we get the benefit of social interaction without that much actual interaction. Some people might call it parallel play.

Random order.
This oxymoron is not how we like the books on our book shelves, or the cans of soup in the cabinet, or our collection of ceramic pigs—or anything, really. Unfortunately, there are some of us who have executive function issues so the clean laundry might stay on the couch waiting (in random order) to be folded—until it needs to be laundered again.

Appear invisible.
This oxymoron is what happens to those of us who are shy and timid. It also happens to some of us by choice because we don’t like to stick out that much. It’s a handy tool at a party we don’t want to attend. It can be escalated to actually BEING invisible by disappearing to a quiet corner or leaving the party altogether.

True myth.
Rain Man—and other such films—is a true myth.

Typically odd.
This oxymoron describes all of us who find ourselves on the autism spectrum.

Only choice.
For most of us with autism, we like those things that make us different. We enjoy our special pursuits and talents and perceive our autism as a positive thing. We like who we are when we’re free from the perils of the more negative aspects of our personalities. And we would no more wish to remove the autism from ourselves than we would our liver. We wouldn’t/couldn’t part with our very personality. Having autism with all of its charms (and not so charming aspects) is really the only choice we would make.

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Verified. Bonafide. Certified.

I’ve waited a very long week to hear the results of my autism spectrum disorder evaluation. Before embarking on the pursuit of an official diagnosis, I was 99% sure I was on the spectrum. But after the first two sessions, I began to have some doubt because I worried that maybe I didn’t present as autistic enough. I worried that the new DSM-V criteria might kick me and my special set of quirks out of the spectrum. I worried that I had not answered the questions correctly or that I had not written enough extra (extra, extra) details in the questionnaires (all those extras seem to point to an autism diagnosis, ironically). If I’m not autistic, What To Do Then?

Because I had read about others’ issues with misdiagnosis, I chose the gold standard in autism evaluation, the TEACCH center one city over from mine. If they determined that I did not have autism, I had to be ready to believe them. They are the experts.

Long story short: the realizations I’ve had in the last six months are justified. My concerns are vindicated. Autism Spectrum Disorder–particularly What Was Formerly Known as Asperger’s–is the diagnosis.

So what does this change? Not much. There aren’t many services for adults with ASD. I knew that going in. But it does help me know that there’s a reason for my issues; it gives me some peace that I’ve been on the right track and that there’s not some other (scary) reason for these things. It will allow me to speak about my kind of autism with more credibility than if I had continued as a self-diagnosed autistic person. Also, it will let people in my family with small children be on the lookout for similar personality traits, gifts, struggles, and perplexities in those little ones.

But back to me:
🙂
I feel so much better to be past the limbo stage and to move on. In the last six months since self-diagnosis, I have been through all the standard stages of grief. I’ve even gotten to the point that I can laugh at myself. And now, I feel so good to have figured this thing out, thanks in most part to anecdotal writings by people on the spectrum (thank you!).

Whew [great sigh of relief].

I’ve gotten my “certificate.”

What if it’s not Autism?

If you look at all my entry dates, you’ll notice that there’s been a great gap in blog post frequency. I have been in the process of being evaluated for autism, which includes filling out buckets of forms, thinking about the past and the present in the context of possible autism (as opposed to not noticing my quirks, which I always thought were just like everyone else’s).  I’ve been a bit too busy to write. But it’s more than that. I’m also a bit fearful that without my “certificate,” I am not a credible writer of autism-related musings.

So tomorrow is the big day, the day of the evaluation. Last week I went in for an interview for three hours. I took along my husband of six years and my mother. I just hope we answered everything in the most true and honest way. I chose to go to TEACCH in a nearby town, which is the gold standard in testing for autism. This is a bit scary for me because if the experts say I don’t have high functioning autism, I’m afraid I’ll have to believe them.

I feel a bit afraid of what is to come but I’ll know for sure on March 21, 2017, at which time, I plan to write again.

Cheerio, Y’all, until then.

Girl on a Skateboard – by A. Wood

I recently became emotionally able to sort through some of the papers from my past and I came across what appeared to be a letter addressed to me. Upon opening it, I saw that it was a story, written about me after the breakup of a relationship years ago. When I read it this time, decades after it was written, it gave me some insight into myself, especially in light of my recent quest for long-ago signs of high functioning autism.

A young girl glides on the skateboard, black hair horizontal, then at rest as she stops along the non-directional journey (because of the primordial urge to seek, to know to her depths, to the squishy place where soul meets body, including but not limited to the sweet, secret plum of the future), pausing only long enough to gather up another book, whether new or old, famous or obscure. Earthsongs hum in her head, her movements are fluid and unanticipated, as she reads and skates and dreams and is.

And the incantations drilled into hard pews of the perfection of Christ and the unapproachable nature of the Virgin, these flashes and the sin snaking and laughing through the horrible brilliance of Sundaymares—all of this blends (but is also clouded by) the literature, the tug of far-off places, extreme climates, manly heroes and virtuous women in large houses, the desires of a smart girl in an unknown Southern town.

She had no mentor. Love and nurture, of course, and good food and basic essential values. If you had seen her then, or just create her now—quick-witted, prettier than most, with a wide laugh, a bit dreamy but essentially normal. The reading and the listening, the gathering of souls and sensations—these did not direct her but rather followed the glee of her self’s wanderings, the soul seeking to climb out from the warm earth into being. But the books articulated, verified, amplified the subconscious yearning, and then off to another skateboard.

She taught herself, therefore, grabbing onto the borrowed or secondhand minds, the unseen minds somehow more connected to her core than the sensing ones walking and talking and sleeping beside her. The tug of complexity kept her riding; the others, good and plain, loved her but could not calibrate themselves to her tiny but discernible changes. They saw the breezy and liquid experience (as she knew it) as quirky paradigmatic shifts, and wondered what things went on in her head.

One day she stood unclothed, before the mirror, curious and almost laughing about what boys would want so much. She placed her hands on her belly and directed herself to reverie, reverent and natural prayer (prayer really being nothing more than attention, yet so difficult to attain, so long to wait for the passive to finally assert itself), gracious and servile for the children she would someday bear in terror and wonder.

The walls of time collapsed to sand, the mirror waved before her shut eyes, and she knew she would never die but dance with the moon forever, that she had no reason to fear the pull of gravity upon her nipples. She had no conscious foretaste of the man who would dream of her, sitting in a blue chair, missing her presence with a feeling most akin to homesickness. Her mind and heart were free as she suddenly ran outside, naked and holy, running through a celebratory warm summer rain at dusky  dawn, past new trees and familiar animals, until she fell asleep wherever, nothing on her belly but birdsong.

She is skateboarding again, on the limitless streets of that village of simple food and old-timey shopkeepers, gliding by the jeers and desirous eyes of spitting boys, ignored by the girls with stable hair and purring with fashion recipes, grasping a book today coverless and dogeared, found somewhere. She casts away those pages not resonating with truth she can never find yet never stop seeking with the full passion of one strangely made more peaceful with the emerging realization of the playfulness of the ruminous. But this book links her again to herself, she doesn’t hear anything as breezes split to her gracefulness, her poise only disturbed by the pile of books she smacks into.

Stunned not by pain but by its immensity, its apex surely to the tip of God’s chin she picks herself up, picks a book up, rubbing the gilt edges across her cheek. She wants them all, wants to know not merely the ideas (the capitalized ancient Truths) but also the literal script, the subtle slips of curves and dots unseen by non-seekers and pedestrian readers like myself. But she is daunted by the immensity of it all. The cogs and sprockets within her grow timid, squeak, whisper retreat. Her skateboard pants—and the razor-sharp wheels droop to immobile ellipses.

She sits and closes her eyes as a breeze rakes over where the garment gapes; the intermittence of skin flashing between two edges of the open-necked shirt, the sliver of torso between shirt and shorts, the expanse of strong legs filling her shoes. The distress within subsides, and she will make camp and settle. She picks up the book and begins to untangle the strings of words, imprinting them upon her heart in a fine hand. At the edge of town she accepts that she is a refugee with a psyche craving to be plugged by these golden words, in these golden times, before and after womanhood. The first of many falls open in her lap and she begins, at peace.

– A. Wood

Grace Notes

Today Pro and I went to the funeral of our neighbor, Farmer Luck, who successfully made it to his 86th birthday last month. The thing that stood out most during the service was the music. In spite of my very country upbringing, this was the first time I’ve ever heard bluegrass music at a funeral. It turns out that Farmer Luck played the banjo back in his day and the music was in his honor.

During the funeral, those banjos pulled emotions out of me that I had buried. As a white-haired man with crevices in his voice pulled notes from the strings and belted out a plaintive song, I saw my own father, from the country, himself a lover of banjos. I heard creek babbling and wind noises from the woods I played in when I was small. I saw visions of ferns by the spring, Granny Mozelle’s fingers, curved by arthritis. The banjos evoked so many memories and forgotten feelings!

The banjos talked to each other and to us and I sat there enthralled. Hymns must have been Farmer Luck’s favorite music; he did play banjo at church all those ages ago. I noted to myself that a banjo might not be the first instrument I think of when I think of hymns. The sound of a banjo is distinctively strong; notes are struck, plucked, loud. And without some padding in between the notes, the melody would stand out too stark. Too staccato. Which is why grace notes were invented!

So today at the funeral, when the banjos were wrenching emotions from my very gut, my mind was on Dot, who lost her partner of 62 years. I imagined how tomorrow morning, for her, will be so different from this morning. Tomorrow will be quiet and still, without the benefit of getting ready for the funeral. The photos of her and sweet Farmer Luck, that sat on the casket, will return to the living room as paper-metal-glass reminders of what is now missing. And Farmer Luck’s camel-colored easy chair will be empty when sunlight hits the fabric and remain so until darkness comes. “Do you want grits this morning?” she might ask from the kitchen to the empty chair, out of habit. And midway through that question, she will realize that she is talking only to air and her lungs will feel like they are being sucked as flat as a vacuum pack. And she will sit in her beautiful kitchen and cry to herself, amid two plates and the double breakfast she accidentally cooked.

The banjos made me think of the structure of life after someone we love had died. Yes, life goes on. We step from one single note to another, like stepping stones. Or milestones. We make it, we live. But to live fully, we need the grace notes, those notes whose purpose is to be extra, to give beauty. Grace notes. That’s what I wish now for Dot.

The Sixth Stage of Grief

When I first discovered that I had (What Was Formerly Known as) Asperger’s, I was sitting on the couch with my laptop. I knew about the disorder because my nephew was diagnosed with Asperger’s Syndrome four years ago and I read up in order to understand him better. For several years, there was always this nagging thought in the back of my mind that did not make it to the forefront of my consciousness. I am the type of person who doesn’t realize she is cold until she’s driven in the car for 45 minutes in the wintertime, with the heat off. So the little details that explain the challenges of my life stayed dormant and didn’t shoot forth until they came (and still come) in little bursts of clarity at 3:00 in the morning or at other unusual times. But there was this crystallizing moment where something sharp stirred in my brain, spurring me to actually search for Asperger’s in Women instead of just Asperger’s.

I remember that I was shocked. I felt like the joke had been on me; I was the one who educated people about autism and especially Asperger’s (because to most people, it’s invisible; what you don’t understand, you don’t see) because I wanted people like my nephew to be given a break. Regular people, please don’t always assume the kid in the grocery store acting like a brat is actually a brat. Autistic people have different brain wiring and they can’t change their brain apparatus any more than neurotypical people can change theirs. So give them a break, Neurotypical People! That was my message.

In my earlier life, which I now find ironic, I used the following phrase to describe certain people: “socially retarded.” Now before you get all worked up about the phrase I just used, please let me defend myself a little. I took French for two years in high school and for two years in college. The French word, “tard” means late. I have identified with that French word my entire life because with the exception of learning to read, I have been late in just about everything. When I think of the word, “retarded,” I picture someone who is perpetually late. In that regard, there should be no objection to my use of the word. And now that I realize that I am the one who is socially retarded, I feel like my use of the phrase is even more justified. Socially, people like me can understand other people and we can have empathy for them. It just takes us some time and, for me at least, it almost never happens on the fly but later, in the middle of the night or after a month. Or sometimes, years.

For me, the stages of grief were out of kilter and I even skipped some stages.

In my family, I was the kid who always did really well at end of grade testing and in school in general. For the first few years of school, I was a Whiz Kid. Never in a million-bazillion years would I have thought I had autism. My inadvertent Denial was the result of ignorance about autism and its many flavors and amplitudes, rather than an unwillingness to admit to it.

Anger, the result of frustration at the visceral level and my fight-or-flight response to normal stimuli, was something I was born with, not resulting from diagnosis.

I have always been good at bargaining; you should have seen me once in Rome while dealing with a street vendor. But I never really experienced Bargaining about my autism.

For me, Depression came in full force in perimenopause, a few years before I got autism ( 🙂 ). I had (what I now recognize as) smaller bouts of it all my life. I’m not the best at self awareness or even noticing my own pain, so if you’d asked me about depression all those years ago, I would have said, “I never have depression.” I would have also said, “I’m not angry” and you would have said, “So why are you wearing your angry face?”

After some of the shock of diagnosis wore off, I experienced alternating waves of relief and Depression. Now I could explain the struggles of my life: the spotty resume, the realization that most of my jobs had been part-time and short-lasting, that it took me seven years to get a bachelor’s degree, why even now teen-aged girls make me nervous, my need for home and security, why I couldn’t figure out exactly which question a person was asking so I answered questions not even asked and ended up seeming dishonest, why I have a larger than usual personal zone, why my skin actually crawls if people get too close to me, why I don’t like shopping or large crowds, why I look at people’s mouths during a conversation, why the path of my life is always from point A to point B and I often walk right over anything in between, why I can talk to a thousand people at once but have more trouble when talking to one or two, why people think I’m rude when I’m trying very hard to be the opposite. And, if you know anything about (What Was Formerly Known as) Asperger’s, you know some of the many other things on the list.

Coupled with the relief that the source of my issues had a name, there was also the sinking feeling there was nothing I could do about any of it. Before, I had been rather ignorant about my challenges (everyone has challenges, right?) But now, I started seeing myself as others see me. Or as I think/fear that others see me. Now I became the observer and the observed. It was quite a depressing concept.

Acceptance is what you do when you can’t do anything else. Or want to do anything else. I accepted my autism quite readily because it explains everything. It’s like accepting the Theory of Gravity. I’ve observed it all my life so I didn’t have any problem accepting the name for it, when I learned about it in school. I did have a problem when I was told that Sir Isaac Newton discovered it. I felt certain that people had observed it for eons so how could he have discovered it?

I know there are five official steps of grief and now that I have been through all five, I realize that there’s also a sixth one. Humor. When the knowledge of having Asperger’s was still pretty new to me (I’ve known for a about four months), I called my sister, laughing hysterically. Quirky gallows humor to be sure. That day I had gone to a public restroom and the only stall available was a Handicap stall and I used it without guilt. “Before I had Asperger’s,” I recounted to her, “I would never have used a Handicap stall. But now that I have it, I do!”