Part 1 of 2
I am 38 years old, and I was born in Pittsburgh, PA. I grew up near Cleveland, Ohio; currently, I live near Phoenix, AZ.
Currently unemployed; the last time I had a job was 2013. My masking endurance just isn’t what it used to be, and I can’t mask much at all anymore. Apparently, that makes me de facto unemployable, despite what companies say publicly about supporting a neuro-diverse workforce.
Before I finished school, my campus therapist suggested that I apply for disability and Medicaid; I don’t know if her suggestion was some tacit acknowledgement that I don’t have the executive functioning necessary to hold a job equal to my education. I suspect that it was, because my executive functioning is mercurial. I don’t know how the Social Security Administration sees the situation, though. I doubt they are very understanding—even their own website warns that diagnosis of a disabling condition is not enough to get disability.
Something people would be surprise to learn about me is that I also have ADHD, and if neurotypical people had any idea how debilitating ADHD is—especially regarding regulation of emotion, impulse, and motivation—I’d bet that that’s the neurological condition humanity would try to cure. Not ASD.
In my opinion is my biggest accomplishment thus far is that I just completed a Bachelor of Science degree from the University of Arizona.
I want to change the world by: I want to get involved with horse racing marketing and promotions, as my degree is in Animal Science with the Race Track Industry Program as my emphasis.
I wish others knew about autism is the physical toll Autism takes from the body through masking and its accompanying anxiety, the hidden stimming (teeth grinding and jaw clenching are my most painful stims, but I don’t even realize I’m doing it until my jaw aches), and the gradual breakdown in fine motor control and dexterity because my brain doesn’t talk to my hands as reliably as it used to. Typing has become more difficult, and I’m worried that soon I won’t be able to drive safely or play a musical instrument anymore.
What I want to tell fellow autistics: 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, because no society designed and run by Autistic people would be so utterly half-assed at everything that Autistic people need to be 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, but it is necessary to do this, and get ready for an ugly fight—the kind where thousands of cable news consumers write in the comment section things like:
“Autistics should be sterilized in exchange for better services.”
“Parents of such children should be allowed to choose euthanasia; it would be a kindness to everyone because autism destroys marriages and families.”
That kind of ugly.
But really, what other choice do any of us have? Leave things as they are and say, “it’s better than it used to be.”? Well I say, “to hell with neurotypical mediocrity—we deserve a better life than this!”
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 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 “Jackie Germs” –which was about as fun as a round with a cat-o-nine-tails. “Jackie 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. “Jackie 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 this was normal and yet just existing caused me so much misery, then the school counselors were right, and I needed to change who I was. Between 3rd and 5th 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—because I don’t automatically adjust volume and pitch to reflect the unspoken dynamic of my relationship to the other people in the conversation.
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 8th 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. I thought I had finally destroyed the clumsy freak buried deep in my brain, but that freak is who I really am, and now that my brain is so exhausted from 30 years of painstaking observation, mimicry, and masking that everything bottled up is coming out. If that isn’t awkward, I don’t know what is.
As I wasn’t diagnosed until age 38, 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 learning 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. 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. When I turned twenty, I started to notice that my hands weren’t responding as quickly as they used to, and 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.