Part 2 of 2
I didn’t have any support for my Autism or ADHD from
anyone—I suspect that when I was a child the Ohio public education system
didn’t have to find the money to educate a disabled child if they didn’t do
anything which might help identify a disabled child who needed help getting
diagnosed with a disability.
The only thing that really seemed to help stabilize me was
music. At age 10 I discovered that I had a talent for learning instruments.
After I joined band and started to learn the clarinet and how to read music, I
taught myself the flute, saxophone, and oboe; I wanted to learn the bassoon and
go for the whole woodwind family, but my high school director couldn’t spare
such a valuable instrument.
Music helped me find my hyper-focus, and I could practice
for hours just working on the comforting physical rhythm of my fingers moving
up and down the scales. I even earned the rank of solo clarinet in the All-Ohio
Sight-Reading Band—I could play a piece of music at first sight better than
nearly anyone else in my age cohort. I thought I had finally found my place.
Unfortunately, when I tried to major in music performance
my ADHD-addled brain couldn’t handle all the other parts of music, like theory
and sight-singing. Then when I turned twenty years old, I noticed that my hands
weren’t responding as quickly as they used to; pieces which I used to play with
little strain became frustrating challenges. I had no idea that my problems
were neurological, and honestly, I don’t think any practicing psychologist at
the time could identify an autistic female. I had to shoulder the shame and
blame of flunking out of music school because no one looked past the easy
answer which was that I was a hopelessly scatterbrained, mediocre hack who
peaked in high school.
It took a long time to accept that music and I had to live
in different worlds, but I still love to play when my brain and hands can
support it.
Regarding awkwardness, I think the most awkward event in my
past is that I am a walking Exhibit A of the utter indifference or
incompetence of nearly every counselor and teacher I had K-12.
I know my parents, school counselors, and teachers all knew
that there was something seriously wrong with me. I was Weird with a
capital “W”. I was blazingly socially unaware, hilariously gullible and
trusting, and completely overwhelmed by the chaotic school environment. I was
the Weird, fat girl always having sobbing tantrums and emotional collapses daily,
but the advice of the counselors was always to find the students who always had
their work done, and who everyone liked, and just do what they do. I
think this is from the “nurture” school of psychology that some children were
born socially deaf and blind, but social language and behavior was something
that a person could learn through observation and mimicry, and then everything
would be fine.
I think that’s why no one ever stopped the daily physical
assault I endured in 3rd and 4th grade while my
classmates played the charming game of “Jacqui Germs” which was about as fun
for me as a round with a cat-o-nine-tails. “Jacqui Germs” required the girls to
slap and punch me to vaccinate themselves against the icky boys—and the boys to
inoculate themselves against the icky girls. “Jacqui Germs” eventually lost its
appeal, but its lesson remained: I was literally the worst thing anyone
could ever have to endure.
Concrete thinker that I am, I reasoned that because no one
in a position of authority stopped the assaults that meant that the teachers
and school aides condoned the action. I deserved it, and if I would just stop
being So Weird and be like everyone else the children would have no
reason to hit me.
If being myself caused others to hate me, and that in turn
caused me misery, then the school counselors were right: I needed to change who
I was.
Between third and fifth grade I started to eliminate and
change everything about myself; I modeled myself after the android Data on Star
Trek: The Next Generation, a character challenged with learning about
social behavior and expectations the hard way—just like I had to learn. I
practiced a perfectly blank expression until I eliminated outward emotional
expression.
Vocal inflection was (and still is) a challenge; my tone of
voice has always gotten me into serious trouble at home, school, and work—back
when I could work. Unspoken social dynamics mean very little to me; I can’t
automatically adjust my voice’s volume and pitch to reflect the nature of my
relationship to other people in the conversation. But Data spoke the same way
to everyone—and so I practiced Data’s perfectly measured, emotionless speaking
cadence, volume, and inflection until I could speak without inspiring violent
rage in my father, a man who was determined to beat the Weird out of me.
By eighth grade I had a completely different personality;
though my classmates were still cruel, their hatred was less visceral and more
like a habit which still amused at times but was starting to feel a bit played
out. When my family changed school districts in the middle of my eighth grade,
I thought I had I chance to start fresh because I had finally destroyed the
clumsy freak and buried its corpse deep in my brain. (By the way, parents:
don’t do that to an Autistic child. Ever. Work it out so the kid can at least
finish the year in the same school.)
However, that freak is who I really am. Now my brain is so
exhausted from 30 years of painstaking observation, mimicry, and masking that
everything bottled up is coming out in very troubling and unpredictable ways. If
that isn’t awkward, I don’t know what is.
But life isn’t all bitter memories—I think Autistics are in
a powerful position by sheer numbers to demand big changes in the United
States; I say this whenever someone says “oh, isn’t everyone a little Autistic
anyway?” and I point out that this world would be a very different place if
that were true. No society designed and run by Autistic people would be so utterly
half-assed at everything that Autistic people need done consistently and
well. No Autistic person can hope to have the one thing we crave—stability—when
living a nomadic life of chasing Autism services around the country, trying to
slide in under a discriminatory age barrier. This is the definition of
inhumane. This must end.
American Autistics like me are going to have to get very
vocal and about demanding some form of national Medicare to cover all
Autism-related healthcare and disability accommodation for life. This
will require mobilizing tens-of-thousands of people to demonstrate—like in the
1980s for the Americans with Disabilities Act—and to get ready for an ugly
fight. A no-rules fight. The kind of fight where ableists use social media to
get horrible hashtags like #notrealpeople or #euthanize trending.
That kind of ugly.
But honestly, what other choice do any of us have? Leave
things as they are and convince ourselves that “it’s better than it used to be.”
Well I say, “to hell with neurotypical mediocrity—we deserve a better life than
this!”
As a female, Autism has a different expression than the
male stereotype; an expression which evaluating psychologists are only just
starting to use when evaluating a female patient. I was long, long past the
point of getting the help I needed when it could have done the most good when Facebook
introduced me to Robert, a young man from Wales who also shared my obsessive
interest in the animated program Archer.
I didn’t know he was Autistic until he posted a meme (memes
are one of Robert’s Special Interests) about the unique ways Autism can
manifest which aren’t part of the stereotype; the one that shocked me was about
sock seams. Horrible, horrible sock seams. The Seam of Suffering. My old
foe—the battles I would give to avoid wearing the abrasive socks my parents
bought with those massive, agonizing seams that made me scream in pain and
fear. This stunned me; I thought everyone screamed in pain at the rubbing seams
of awful socks, but I couldn’t remember why it stopped being a problem. Was this
part of my personality makeover? Was I so scared of my dad “giving me something
to cry about” that suffering in silence was preferable?
My head spun as I realized I had a huge hole in my memory—what
had happened? And how did autism come into all this? According to those news
programs my grandparents watched Sunday evening, Autism was sitting in a
corner, rocking back and forth. Autism was playing a piano concerto perfectly
at first reading or drawing cityscapes from memory. Autism was screaming kids
wearing helmets, strapped down to their beds to keep them from wandering off,
or old people with vacant eyes who spent their whole lives in the care of the
state, shuffling silently around a locked ward. I wanted nothing to do
with this, but the genie was out of the bottle. I had to know more.
Robert was amazed that I didn’t realize I was probably
Autistic—he’d figured it out long before through nothing but our rapid-fire,
word-for-word recitation of whole scenes of dialogue in Archer and The
Simpson’s. The kind of recall for which Autistics are legendary.
I scoffed and said there was no way I was autistic because everyone
knew that only boys have Autism. Over the years counselors,
psychologists, and psychiatrists diagnosed me with Depression, Obsessive-Compulsive
Disorder, Anxiety, a smidge of Multiple Personality Dissociative Disorder, an
Electra Complex, and even had one therapist suggest that what I needed was a
good screw—but not once had anyone ever said anything about Autism.
Once I started to dig into it, it was like falling down a
rabbit hole: walking on tiptoes; unusually intense interests; food avoidance; social
ostracism by other classmates; a desperate need for control and stability;
extreme reactions or underreactions to sensory input; explosive, uncontrollable
reactions to emotions I couldn’t understand; spinning, spinning, spinning on
the chairs at my dad’s office; calming myself down by rocking and swaying to
music; pulling hair—eyelashes, eyebrows for the brief twinge of pain, and then
the soothing pleasure which followed.
As I learned what the Autism Spectrum is, versus what is
sufficiently comedic or dramatic for the purposes of Hollywood, I realized this
wasn’t a rabbit hole—this was now a Neo-Meets-Morpheus, “what if I told
you…?” red-pill moment that ended in a hollow, betrayed feeling of “how the
f*ck did no one see this? Was I that unimportant, even to the people in
schools whose entire job is to find kids who have a disorder or condition?”
Upon reflection, I have to say that I either wasn’t that
important to anyone who had a chance to make a difference when it counted the
most, or I needed someone who understood what they were seeing, and that
certainly wasn’t the anyone in the employ of an Ohio public school.
After hearing the diagnosing neuropsychologist say the
words “you are on the Autism Spectrum” my first feeling was surprise. After my
assessment I spent the ensuing weeks telling myself that there wasn’t a chance
I would be so fortunate as to have a good reason for being such a dismal
failure in life. I knew I fit much of the diagnostic criteria, but would the
neuropsychologist also figure that out? And just how much of the diagnostic
criteria was necessary to make the jump from “neurotic head-case” to “Autistic”?
My friend Robert insisted that if even half of what I
described was true, there was no question that I was Autistic. Even so, I
pointed out that if no one cared about my difficulties back when they were
obvious because I didn’t know how to hide them, why would anyone care now since
I had learned how to fake normalcy? After all, who would ever know the
difference if even I didn’t realize I’d trained myself out of
necessity to override my natural, Autistic thought process and instincts with
an unnatural, learned set of behaviors?
But while the Autism diagnosis wasn’t entirely a shock, the
diagnosis of combined-type Attention Deficit Hyperactive Disorder was a total
surprise. I just thought I was scatterbrained and probably a bit below average
intelligence since I needed so much more time to learn a new concept or to get
anything done.
I’ve had about six months now to digest all this
information, and upon reflection I am honestly amazed that I am still alive. Now
that I understand that some or most of my spectacularly bad judgement comes
from a brain not firing fast enough to get that life-saving second thought to
the front of my mind before my very fast impulsive thoughts become actions, I
realize that I have been very, very lucky. As I said earlier, if most
people understood the destructive nature of ADHD, more people would be
clamoring for better treatment.
With no diagnosis I took on every criticism as an
assessment of my value as a human being, every insult as fact, every failed
attempt at friendship or romance as a reminder of the obvious: I was a
biological error. A mistake. Or possibly, with my terrible coordination, utter
lack of charisma, and unattractive physical appearance—perhaps even literally cursed.
According to everyone who could have helped me, there was
nothing wrong with me that couldn’t be fixed through a little hard work and
perseverance on my part. Even bullying was good for me because there was just so
much wrong with me that I couldn’t possibly remember all of it; derisive
laughter at my expense was a warning that the clumsy freak was closer to the
surface than I realized, and I should be glad that someone cared enough to
point it out in a memorable way.
Without question my most consistent obstacle is bullying:
no matter what, no matter where, bullies will find Autistics. We are The
Other, and our entire society stands by flushing out and eliminating The
Other. I know from decades of experience that I am a satisfying target,
being tall, unattractive, incredibly gullible, and very easy to work into an
ADHD meltdown, or a dissociative Autistic shutdown.
How have I gotten through them? Well, mostly the man who
became my shelter through all this: Kristian, my fiancé. But I must also give credit
to luck for playing a huge part in even getting me to a place where our paths
could intersect.
Not everyone is so lucky as to have the embodiment of their
misery drop dead, but my mother’s second husband was the worst bully I’ve known
to date. I won’t lie about how I feel—my life became so much better once that
man was dust in an urn. The agony I endured from his forced eye-contact
lectures, his rages at me for hints he dropped that I missed, his demand that
all my “odd” (stimming) behaviors end immediately, his constant and very real
threat to kick me out, among the many other horrors I endured, truly nothing else
in my life has been quite as cathartic and liberating as seeing him brain dead
after an unexpected seizure. I do still have nightmares about him though, so
his damage lives on.
In time I hope it will fade.