Updated: Jan 10, 2022
To launch 2022, and to amplify the message of The Bridge Fund and why I’m so committed to making Pittsburgh Autism’s Most Livable City, I wanted to share a first-hand account of what it’s like to work in a place that understands and values neurodiversity versus what it’s like in a world that doesn’t value or understand neurodiversity. Like most of the stories I tell, it’s a little circuitous.
People that know me as an adult curmudgeon might be surprised to know that I was a very happy little kid. There was nothing that I liked more than music and I spent most of my time listening to records on my little record player. My mother was a music teacher and would bring home instruments and records for me to entertain myself with- the autoharp: not that interesting for a three year old, the french horn: more interesting but terrible for my mother’s nerves, the xylophone: worked well for both of us, There was no way to play out of tune and it was not very loud. I spent entire days playing the xylophone along with my records.
As an adult who has now met toddlers in real life, I now understand how unusual it was for a preschooler to focus on anything for hours, but there I was dancing and playing the xylophone along with my 45 of “Jungle Boogie.” I would cut my lunch break short out of an urgency to “get back to it” like I was a middle-aged accountant at tax time. I wanted to know everything about music. It was pretty clear to everyone that I was going to be a musician.
But then, like Shiva the Destroyer, first-grade came along and destroyed my world. The teachers were always upset with me, the other kids were awful to me and I just never knew why. By the time third grade, and instrument lessons started, I lived in the red-zone. I was in constant fear of doing the wrong thing and there were physical and mental consequences. My neck and shoulders ached constantly, my mouth would go dry when I needed to speak, my limbs were jerky. I obsessed over small decisions like whether or not it was ok to get up to sharpen my pencil. Everything was fraught. I was eight.
Adults were mad at me all the time. I understand now that my ‘uneven skills profile’ was inconceivable to the pedagogy of the 70s and that teachers of the time could only conclude that I was being stubborn, lazy or disobedient even when I gave my best.
There are places in my brain that simply go blank sometimes. If you remember the early days of GPS in cars, its like when you’d drive across either a really new road, or a really old one that wasn’t in the GPS database yet- the screen displayed your little car-arrow just floating across totally blank territory. I could do something- up to a point- and then the ground disappeared and I felt like I was sliding down a cliff. Learning to read was like this, and so was long-division, though they both eventually clicked.
Some confluence of massive anxiety and weird cognitive wiring put learning to read music firmly inside a massive blank area in my brain. Starting with my in-school trumpet lessons, the one thing that felt magical to me became a danger zone: music. I could not make the connection between musical notation and what my body was supposed to do. With a lot of labor, I could parse out what the notation meant and learn a piece that way, at least the notes. The timing notation I couldn’t even try to understand- it went by too quickly on the page for me to make sense of it. I was paying attention. I was trying my best. My instrument teacher never believed me.
I was ashamed, constantly, and I certainly couldn't admit to my mother that I was unable to sight-read. I faked my way all the way through high school marching band, which I still have flashbacks about. That was a lot of years feeling like you're sliding down a cliff.
I did teach myself how to play the guitar, but my mom was a classical music snob, and even though there was no support at home for “that hillbilly instrument” I clung to it, and it was a life-raft for me. Music school was out of the question, since sight-reading was mandatory. I hung on though, and performed as a singer songwriter in my 20s and 30s, but always felt like a fraud and that conflict led me to quit several times. I still play, but gigs are out of the question- I’m too old to stay out that late.
My point here is that had I been diagnosed as a kid- autism, ADHD, dyspraxia, etc., I wouldn’t have spent so much of my life being crippled by fear and self doubt and I’d probably be a music teacher.
Don’t get me wrong, I’m happy with my life and proud of the things I’ve accomplished, but the truth is life might have been different. The truth is that I was prevented from being good at those instruments, or feeling like I was a “real” musician because of an insistence that I adhere to a set of rigid rules that dictated things be done in a certain way. I lost out on a more comfortable place in the world because my way was “out-of-order.” I could achieve the same results, I just had to approach in a slightly different way- playing the music and reading the music had to be distinct activities for me. Sight Reading, which was the be-all and end-all was just never going to happen for me- but that didn’t mean I didn’t have musical talent or that I should be stifled by shame.
So, what does any of this have to do with Evolve? Why do I love my job?
Because I know about my own neurodiversity, and because my coworkers at Evolve have made it comfortable for me to exist as my authentic Neurodiverse self, it’s a terrific place to work. I don’t have to spend energy wondering if it’s ok to get up and sharpen my pencil. I’m not terrified that someone will discover the blank spot on my GPS when something is difficult for me to figure out. No one uses my uneven skills profile as evidence that I don’t belong there. I’m able to ask for help, relax my body, think freely and not fear rejection of my ideas and feel like I belong because my colleagues at Evolve understand Neurodiversity- not as service providers, but as co-workers who make me feel that I belong.
I want that sense of belonging and that comfortable environment for everyone.