When my daughter Jess was a toddler, we had a set of board books about the Disney Babies, which were the “baby” versions of Mickey, Minnie and Donald. Jess loved these books. For months, every night we had to read her the Disney Baby books at bedtime. The opening line of one of the books was
“It’s a bright sunny day. The Disney Babies go out to play.”
How do I remember that? Because to this day, I’ll still occasionally walk outside and say, “It’s a bright sunny day” and if The Scientist is around he’ll reply with some variation of “Mickey and Minnie go out to play.”
Yes, he remembers it wrong but that’s not my point. My point is that this is what delayed echolalia looks like in someone who has functional language skills. More than twenty years later, I associate that story with good feelings. Reading it…
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.
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!).
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.
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.
When I first started reading about Asperger’s Syndrome as it reveals itself in females, I noticed a particular term, Parallel Play. Since I was studying the syndrome in regard to myself, I tried to remember how I played as a little girl, to see if that term applied to me.
I remember that my very favorite thing to play was shop keeper. I loved miniatures and I loved miniature food, like the little “cans” of Campbell’s Alphabet Soup with miniature, true-to-life labels on them. I loved the idea that my shop would have all kinds of tiny food, arranged neatly on the shelves, with the labels perfectly lined up for the shopper’s easy view. Ironically, I was perfectly happy as a store keeper with no customers. My joy was display and presentation. (I guess it’s no wonder then, that some of my happiest years in the work force–though the pay was low– was when I did window display for a store in downtown Winston-Salem back in the 1990s, where I lasted six years, a record for me).
I was also drawn to my brothers’ Tonka trucks and the idea of moving earth, on a miniature scale. I loved moving the earth into rows with the buckets and back hoes that actually worked (the toys I liked were based on how “real” they were or how “real” they worked). Funny how, until searching back in time in regard to Asperger’s, I had forgotten all about this! Ford, my oldest brother is about five years older than I and JD is about two years younger. I was drawn to their toys instead of my older sister’s toys. Laina is three years older than I and she was very maternal even as a young child. She enjoyed playing with Barbies; I enjoyed playing with the Barbie case, which our mother had made into a little closet, with miniature clothes, clothes hangers, and drawers that actually worked.
I did play with regular dolls. I was obsessed with real-life babies and baby dolls were an approximation of real babies (they were “realer” than Barbie dolls, which I thought were absolute nonsense; who’s ever seen anybody who looked like Barbie? And Ken Doll? Can you say, “Ugh!” To this day, I am physically repulsed by men who are overly groomed or who have what I call plastic hair). I had three baby dolls that made it into my heart. “Sugar Plum” was my first. Though I named her, I always thought her name was a bit cliché. Then came “Egele” (pronounced “AY-guh-lay”) so named from the heights of my imagination and my love of beautiful sounds. And last, was a boy doll (in my mind, not anatomically) named “David.” I distinctly remember that in fairness to each doll, I tried to divvy out my attention equally and actually felt guilty for “replacing” one doll with the other.
Reading has been a passion that has stood the test of time through all of the stages of my life except for a period when it was squelched (during my second marriage- a story for another time). Books were my escape. They were my friends. I think maybe I fell for the smell of an old book and the soft feel of well-worn paper more than the actual characters in the books (I didn’t appreciate modern books that are put together with cheap glue and their spine falls apart sometimes before the book is finished). At any rate, I could read a book in a crowd, while I was with two people, in the car, while on a pony, on the back of a bicycle, or walking home from school, which I did every day in middle school. People and events around me faded into the background when I had a book.
When I spent time with other girls, it is apparent to me now that I was usually the third wheel, a position that worked well for me because it allowed me to not-lead, not-follow, but remain “out there,” while spending time around other people. I refer to a quote I heard when I was a young adult: “Lead, follow, or get out of the way,” which, while I objected to such a narrow categorization of personality types, I always felt that I was one of those get-out-of-the-way people. Third Wheel allowed me to be part of the group without the pressures of being leader or follower. Being Third Wheel allowed me to seem to play with the others, while really doing my own thing. I learned a lot about how to act by observing Sandra and Marissa, my friends from first through fourth grades. I’m not sure what they got out of the arrangement.
When I went to college in my late twenties, I made friends with two wonderful women, Kim and Robette. They both had what I think of as balanced brains; they were really good at math/science AND English/literature-related courses. As an unbalanced learner (I was weak in math, very strong in English/literature), I loved hanging around them. At the time, I sort of recognized my position as Third Wheel but I thought it had to do with my lack of commonality with them, since they were members of the Motherhood Club and I wasn’t. With them, I was the kooky, quirky, auxiliary person. The comedian. It was an easy friendship.
This pattern of Third Wheel to two best friends follows me still. Lisa and Phyllis, two current friends, both have “best friends” other than myself. I have never really been envious of that, probably because what I can give is on par with what is usually expected of a Third Wheel.
And now, in my happy (third) marriage, even before I discovered the Asperger contribution to my personality, I have noticed that I tend to enjoy watching a movie on my smart phone more than I do on the bigger TV screen with my husband. He is a member of the ADHD Club and is an only child who grew up sort of in his own world both physically and psychologically. Sometimes we will be in the same room, enjoying the comfort of physical proximity, each of us doing our own thing. You can see us at any given time and one of us will be wearing head phones or ear buds!
For me, whatever endeavor I am in the middle of, I do with intensity. That intensity determines that I can only do one thing at a time. I can only watch the movie. I can only talk with someone. I can’t really do both at the same time (what’s with talking during a movie, anyway?).
If you had asked me ten years ago if I were a team player, I would have said, “Yes!” I would have given you an illustration I still love. I call it the hay-getting-up analogy. If you’ve ever helped anyone get up hay in the summertime, it’s wonderful. Everyone works together toward a common goal of getting the hay into the barn before it rains. It’s usually a big crowd of people, there’s busy-ness and a little bit of urgency. I have always loved being part of a festive endeavor like this. An old-time quilting bee has the same appeal.
But if you think about hay harvest (and group quilt-making), each person has her own separate responsibility. Each person does his own part while others do theirs, a concurrent endeavor like the gears working in an old clock. I now realize that hay harvesting is Parallel Play at its best.
So, yes, I recognize that I am a parallel player by nature and a “team player” as long as I get to do one part of a job that still allows me to play all by myself.
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.