Saturday, July 13, 2019



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.  

No comments:

Post a Comment