(Personal stories about autism. If you would like to see your musings on this page, please email Mary-Minn at firstname.lastname@example.org, or visit KindTree's BLOG at www.kindtree-autismrocks.blogspot.com/ )
There are some classic misconceptions and stereotypes about autistic people that come and, for some, go with fashion. I fit none of them, except, maybe, when I’m having a nervous breakdown.
When I was little and first diagnosed, in the early ‘50s, the diagnosis was extremely rare. In my case, it was stated in the adjectival form, as in "autistic" behavior. Another virtually interchangeable term in my case notes was "schizoid". Back then, autism was seen as a personality disorder caused by a withholding and cold mother. In those days, so many conditions were blamed on the mother.
The stereotype was that autistic children had no interest in the world around or outside them. Only people with no first-hand experience with autistic people think autists are unreachable, lost in their own world. I, for one, have never met a single autist like that, nor was I like that. I couldn’t talk until I was almost 5 though I was singing songs when I was a year old.
I was nonverbal, freaking out, obsessed with my grandmothers’ friends’ stimmy diamonds, the lipstick-fragrant inside of their purses, and also weather patterns. My nosiness showed an interest in the outside world. My love of sparkly things, soft fragrance and weather persists and my list of "obsessions" has grown. If I were neuronormal, these would be considered simply "a few of my favorite things", to quote Maria in "The Sound of Music".
I have always been an extrovert, my attention directed outward into the world rather than internalized and self-contained, as is the autistic stereotype. From the time I was 5, I was garrulous, making up for lost non-verbal time. I was social, though socially inept; my mother’s word for it was "oblivious". I had a best friend until she moved away in junior high and I started to be plagued by a succession of false friends. I wanted friends desperately but didn’t know how to choose them. This all goes to show that some of us on the spectrum are social, which, given our primitive social skills, is actually more painful than fitting into the stereotype by being socially aloof.
Another stereotype is a fear of change. When I was 7, I moved from my grandparents’ house in Iowa to live with my parents and siblings in Lebanon. I was thrilled to be moving into a new and less structured environment, though "structure" was a concept I didn’t have. I was intrigued by novelty, at least until I actually had to adapt to it. I preferred staying overnight with just about anybody to being at home. Even when my family was evacuated from Lebanon during the June War in the summer of 1967, I was actually intrigued by the "adventurous" prospect of being a refugee, thrilled to be let out early from odious 7th grade. Until I got my first job working for people other than friends, change was a blessed reprieve from the status quo of stifling and often incomprehensible rules.
When I moved to Lebanon to be with my parents and siblings at age 7, no mention was made about my 4-year absence while living with my grandparents in Iowa and no explanation was given as to why I was suddenly in their midst. I had been away since my youngest brother was a year old and the second youngest was 2, so they didn’t remember me. My two older siblings were only 18 and 36 months older than I. Suddenly having another sibling must have been strange for them, but what is strange–or normal, for that matter–when you’re that young?
I was, as my grandparents’ generation called it, "a little peculiar", which is a kinder and more accurate euphemism than the ones we go through by turns now, discarding them as they gradually acquire the connotation as well as denotation of the somewhat shameful phenomenon to which they’re alluding—and avoiding. Back when fewer diagnoses were household names and the word "handicap" (the locution for disability back then) was reserved for people with mobility problems, people were often more allowing of people who were odd.
All the way down to school in Beirut, I hummed and rocked, which took up even more valuable space in our cramped VW, with my two youngest brothers squeezed into the back storage pocket and us 3 older kids in the back seat. I was composing symphonies, but who knows what others were hearing?
Walking up the Stinky Stairs to my father’s office one dismal rainy day after school, I stepped in some urine and feces. Men urinated on public walls outside. Depressed, hungry, exhausted from school, my delicate senses overwhelmed, I cried inconsolably for 4 straight hours. My father made me write and hand-deliver letters of apology to all the professors in his department at the American University for my disruptive behavior.
Penmanship has always been excruciating for me. Though I didn’t even know of the existence of carbon paper, I fantasized about some kind of paper that you could place in between other pages and copy letters without having to write each of them. (I’m convinced I would have invented some primitive form of it by 3rd grade.)
I presented these letters to each of the professors, who accepted it kindly, perhaps taken aback by my need to apologize. After that, I sublimated any sadness into quiet resentment and anger, as well as autistic frustrated rage.
My precocious older sister, with whom I shared a bedroom, found me embarrassing. She had no idea why I was clumsy and uncoordinated, socially immature and demanding of attention; why I had such a hard time tying my shoes, dressing myself in any coherent way, cleaning my part of our room; why I whiled away hour after hour rocking myself into a natural high to my Four Tops or Ricky Nelson singles. My mother explained that I was "artistic". As an offspring of a serious artist, who absolved us from chores only if we spent the time drawing or, better yet, posing for her, weren’t all us kids artists, she wondered?
Though nobody back then used the word "autistic" in polite company, my third-grade teacher, at least, knew of my diagnosis. She was educated enough to attempt behavior intervention techniques just then coming into vogue. I knew and resented that I was being treated differently from my peers. I chafed at not being "normal".
Class size was very small, so there was time and room for kids who needed extra help—in my case, in arithmetic, which required a prodigious working memory of too many nonsensical steps for my slow brain, and an instant recall of times tables whenever the teacher snapped her fingers loudly in my face, a sensory shock that would shut down my brain.
I still have a difficult time mastering things that involve lots of sequential steps, such as computer applications, or navigation—be it sense of direction or the ability to move between pages in a database or even Facebook. I am constantly looking for something misplaced, even if I’m looking right at it, making my way out of a maze in a parking lot, or on some obscure page of KindTree’s database that no one else ever knew existed. I’m forever "on the wrong page", a lost soul wandering from one no-zone to the next.
This brings us to another stereotype: the computer savvy Aspy. My autistic diagnosis from early childhood was recently upgraded to Aspergers. I have mixed feelings about this. Ignoring my early speech delay doesn’t bother me. Just as people learn to read at different ages but end up at the same level by the time they’re adults, the same applies to learning to talk.
"Dork" is a more apt description for me than "nerd" when it comes to computer savvy. Though I’ve been working with computers in some menial capacity or other since the early ‘80s, I continue to need intensive special education to master any but the most bonehead level of any new or even updated application. I need a ridiculous amount of hands-on at my own computer station, my instructor monitoring my every click; printed facsimiles of each bar, box or button with written explanations of their functions; plenty of hands-on patience with my same question over and over again, until it’s hardwired into my long-term memory. Then the stubborn rigidity of my long-term memory renders it all the harder to accommodate "updates", all too frequent in office procedures and software applications.
I do have my social difficulties and delicate sensory processing but these I consider to be differences more than defects. Though overtuned senses can be annoying in a fast-moving and overstimulating world, being able to parse scent or reproduce flavors from distant memory, for instance, enriches my life. Also, I have been learning over time to accommodate myself to these differences through observing myself and practicing easier ways of interacting.
My truly frustrating and intractable deficits come with no such silver lining. These are with executive function: changing focus especially in real time, multi-tasking, being able to return to what I’m doing after being interrupted, making fast decisions especially in a new situation with insufficient information. The best tools I have come up with are typographically consistent lists and charts in outline form, step-by-step and visually organized. When I am able to manage this part of my brain successfully, my anxiety–and the behaviors that go with it–all but vanish.
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