
On a hot day in September of 1997,
I sat in my psychiatrist’s office telling him about the job interview I’d just
come from, but I was really there to discuss my results from the tests I’d
taken the week before: The Autism Spectrum Screening Questionnaire
(ASSQ) and the Childhood Asperger's Syndrome Test (CAST- though I was 24 at the
time, an approved evaluation for Asperger's in adults had not yet surfaced). Before we discussed my tests, Dr.
Rolph Palmer, a handsome though mantis-skinny man from
I would soon come to learn exactly why I’d blown the interview that day when I gave
a total stranger some unwanted fashion advice. When my tests had all been
evaluated I was told that, yes, I did have Asperger’s Syndrome, the pervasive
developmental disorder that had just begun to make its presence known on the
socially-challenged scene. Along with the aforementioned tests, I was given
a series of my doctor’s own evaluations to confirm the most common part of the
disorder—alexithymia, the inability to correctly gauge someone’s emotions, and
the chief malfunction that links Asperger’s with autism.
The next three Tuesdays would find me in my psychiatrist’s office, my feet
tucked under my rear on the proverbial leather sofa, watching therapy-edited
movie clips where kids confessed to various crimes, like stealing and drug
use. Also, for reasons I’m still not entirely clear about, there were scenes
thrown in with Barbara Streisand and Robert Redford in The Way We Were.
After the movies, I was asked to give my thoughts on what the delinquent children in the
clips were feeling. “Guilt” was the only answer I could think of for the
thieving young potheads, since most of them were crying and saying how terrible
they felt. Easy. But Barbara Streisand had spent the better part of her role as
Katie Morosky yelling, pleading, or continuously verbalizing her annoyances. I
got confused. So, as I’ve always done, I tried to cover it with humor,
suggesting Babs was expressing a much-needed refill on her Lithium. But instead
of laughing, Dr. Palmer asked me how I would respond if I were the actors
in the films. I broke out in a panic attack.
“I don’t
know,” I said. “People mostly make me angry. Maybe I shouldn’t be here.” Then,
as usual in situations where the spotlight’s burning through my corneas, I
suddenly became aware of what I call “my nervous layers”. The buttons on my
clothes (too tight), the material, (too scratchy), the zippers (too metallic),
then deep into my spine (too glassy), always ending on my hands (not the right
fit).
When I excused myself to the bathroom to breathe in through my nose and count
backwards from twenty, I remembered some of the other questions on the doctor’s
list: During conversations where someone is expressing strong emotions do you
hurriedly change the subject or display other characteristics that would make
it seem as if you were uninterested? Have there been one or more
incidents where you were unclear if someone was expressing themselves as sad,
angry, hurt, hopeful, etc.?
To most of these I had answered yes, circling my numbers from 1-6 to show the
degree to which these things either drove me over the edge or provoked only a
blank stare. Though I was more than willing to learn how to curb my inappropriate
outbursts (mismatched suit ties or otherwise), it was to be a long haul of
reading, research, and trips to the pharmacy before I would truly believe that a
person with high-functioning autism could actually be taught to
translate emotions correctly. Taught emotions. The idea brought an
image to mind of Data from Star Trek being interviewed on Inside the Actor’s
Studio.
Like so many people with Asperger’s—“Aspies” as we’re sometimes called— my
foremost problem wasn’t just the lack of social skills but the deficiency by
which I exhibited those skills in the workplace. When I had to take jobs
other than writing at home alone, I excelled at positions that didn’t require
too much collaboration with other people where I’d be expected to
acknowledge—or worse, praise—someone’s input.
On the friendship front, making the initial move as the Odd Chick from Human
Resources to Not so Bad as a Drinking Buddy was never a problem. But progress
the relationship toward the level of pretending an interest in shopping and going
to the movies—“Well, I’ve been meaning to call, I’ve just been so
busy…” When I was fourteen, I remember telling a shy and
unsuspecting boyfriend that if I had a knife I’d stab him through the
chest—this because he wanted to stroll through Mervyns instead of going with me
to price thesauruses.
It wasn’t that I was snotty or thought I was
above the mall—though this misconception seemed to be the grounds on which most
of my friends would bail. On the contrary, I sometimes wanted so badly to do
things right I’d work myself up into an episode that almost always ended in
vomiting.
One more thing from my mouth I couldn’t control.
It wasn’t until I’d had a clear diagnosis and was offered resources for
alexithymia that I began to understand I could change. As weird as it sounds to
teach a person about how feelings work, those on the high-functioning autism
spectrum can actually learn proper social graces when dealing with responses to
people’s emotions and opinions. (Though the basis of understanding alexithymia
isn’t about teaching emotions; it’s about learning to sort out the
sensory overload that seems to be the common thread in many autistic
people.) In the Aspie part of my brain, a single sentence or incident can
bring on more feelings than I can handle. Fear, hatred, sadness, even an
excess of laughter—all of these can arise from something as trivial as someone
taking the last bagel. In my case, a sensory overload would usually cause a
flight or fight panic response, eventually leading to a total emotional
shutdown. This, I guess, is what usually gave off the impression that I simply
didn’t care what was happening or was choosing to ignore whatever was being
said.
When Sweet Jeans asked me to go to Mervyns, my horrible threat had little to do
with my dislike of malls and more to do with the fact that the mere suggestion
flooded my head with the ever-present burden of excess: too many colors,
the buzz of overhead lights, the stenches of a hundred different perfumes, etc.
How do you tell someone this kind of stuff isn’t your bag without looking like
a total prick?
For a little over a year, I kept a constant journal of interactions I would have
with other people and analyze every one of them. Even the smallest thing,
such as a professor asking me if I could see the blackboard from my seat in the
back of the class, got notes jotted down next to it such as: I’m being
asked out of concern. Many people cannot see the blackboard from the last
row. Open my notebook to any page, and alongside the disturbing
juvenile stickers of Hello Kitty you could find statements like, people feel
threatened if you stand in their space. Death scares us. And
being the huge affirmation whore that I am, I’d have sticky notes-a-plenty in
my purse reminding me to listen. Eye contact. Respond with a
question. Stay on subject matter.
Yes, it was tedious, and to the non-autistic eye, somewhat ridiculous, but I bet
without even trying you can think of a handful of people who aren’t on
the spectrum and still can’t carry on a decent conversation.
Although workplace etiquette is sometimes still a problem for me (and just in
case you’re wondering, no, I didn’t get the job with unmatched tie guy),
happily, I am now only writing from home, where I get to spend less time
worrying if I’m an Awesome Team Player and more time being grateful for just
being able to play without an anxiety attack or a threat to put a knife through
someone’s chest. Sure, I’ll always have my fair share of unease around people
in general—likening most gatherings to a subway full of SARS carriers— but I still
try to keep myself up to the challenges of listening, eye contact, and making
folks comfortable around someone who is trying so hard to hide the fact that
she’s not.