First listen to this: Anxious Mess Podcast
My friend Maddie, who has a graduate degree in Narrative Medicine from Columbia, sent it to me. And parts of it hurt in that way that only someone who knows my pain could do.
I struggled my whole life with executive functioning. I got yelled at constantly as a kid. For being late. For being disheveled. For losing my flute or my school books. For not being where I was supposed to be at the right time. For never doing my homework. It wasn’t enough that I was supremely bad at these things and never quite got better at them. It was that I was shamed about them. Punished. Spanked. Threatened. Repeat. So I learned not to talk about it. I learned not to try things that required my diligence.
On the other end of things, I was monitored by different organizations (I’ll never know who, except for ASU in high school) to take I.Q. tests. And on the regular end-of-year Iowa Test of Basic Skills, I was scoring in the 95th-99th percentile on everything. For all intents and purposes, I should have had at least the mental capacity to pick out my socks on a daily basis.
So why the disconnect? Why was I not put in special ed for my deficits? Well, for one, I grew up in Arizona where special ed has never been a priority. Two, I grew up in a time where female autistic traits weren’t understood. And three, I was labeled lazy and that was the end of that.
I cried lots of hot, angry tears over being misunderstood. Usually at night in bed, with my two sisters right beside me. The problems did not disappear with age. I was a terrible roommate in college. My side of the dorm was always filthy. I didn’t know how to buy groceries. Or do laundry. Or make my bed. Or cook. And I got sick a lot. With respiratory infections and depression. And my brain was so in flux all the time–if I wasn’t trying to solve a problem mentally, I was questioning my reality, and whether my intrinsic knowledge of myself was true…or if I was constantly unveiling the truth cloaked in delusion. Never did I feel like I had two feet planted in reality.
I was able to hold down one job during college. As a computer lab monitor and all around assistant to foreign students at CESL. I loved that job. I got to pick up international scholars from around the world and introduce them to my home. They were always so grateful and kind. But even then I had my limits. Getting to work meant backtracking to figure out which bus to take and when to eat and when to shower and what to wear and when to wake up. It was a bunch of insidious little decisions I had to make that, if approached on the wrong day, would completely overwhelm me.
And so I was happy escaping into academia where very few of those constraints every existed. Except getting to class on time. But academia, from my experience, was full of likeminded people who were absent-minded professor types. They didn’t bend to the will of conformity. They had quirks. They had personality. I had platonic crushes on the good ones and platonic love affairs with the great ones, some lasting to this day.
But, I was advised time and time again, that academia is no place for a modern woman. At least not in the social sciences. So I went to law school. And I hated it. First, I had problems with dates and times. Second, my dyslexia (which I didn’t even know I had) made reading dense legal reading impossible. Third, law school felt like it had fallen into my hands. And so I treated it with my well-developed imposter syndrome.
Here’s how bad it was. I had a locker. And I had a padlock. I also had books. I put the books in the locker and locked it. But I kept forgetting how to use the padlock. It wasn’t the numbers. I can remember incredibly long strings of numbers in my head. It was the mechanism. I got so frustrated with the whole thing, and so ashamed of my stupidity, that I left the books in the locker for the remainder of the semester. I never even looked at them. I went through most of law school just avoiding reading. I still managed. I did better than that. But it was a crippling experience.
Being a lawyer was amazing and terrible all in one gulp of air. I knew how to solve problems in ways that others had not thought of. But I was constantly reminded that I had no common sense. I’m gonna go halfsies on that one. The firm I worked for was full of repressed, conservative, small minded, traditional thinkers who were paranoid and spent their time manipulating people in toxic ways. I, on the other hand, solved problems by making right turns when left ones (the more direct ones) were blocked. But I could not contend with being told that I made careless mistakes (like calling professors or opposing parties–with attorney consent, or the EPA) that ended up solving very expensive problems. It just wasn’t done. And I had no common sense for having done it. Until I did fix things, and all of a sudden, I was brilliant. The only thing I learned was to ask for forgiveness after the fact.
When I was diagnosed with autism, there wasn’t a lot of literature out there about the deficits and sensitivities. And even what was out there was not always right. So in the beginning, getting people to believe me was impossible. The people who knew me and were fed up with me saw it as a last ditch effort to explain away my many faults. No one was listening to what I was actually saying: I need help.
My problems fall through the cracks most of the times. If you see me out on the street, I seem capable and confident. I am well-dressed. I am talkative and affable. I am incredibly intelligent, both intellectually and emotionally. I’m so charming sometimes that people fall in love with me because they finally have the person who will understand every topic or reference they bring up.
But, as it stands today, I have probably five or six crucial bills I haven’t paid. Because the idea overwhelms me. I have laundry ready for me on the corner, but something terrifies me about going over there. And I have a roommate who I think is done playing nice because she thinks I’m lazy and taking advantage of her kindness, when really, this change has been monumental on a variety of levels and I am doing the best I can most days. And I only think this because I’ve learned how to approach problems from someone else’s vantage point. I certainly didn’t hear it from her because her way of dealing with it is to become passive aggressive. Something I wouldn’t know how to do and something that hurts very much because it basically says: I think bad thoughts about you that you’ll never know but can only imagine. And I can imagine a lot.
The part about the podcast that hurt the most is the discussion of living independently. People with autism have deficits that need assistance. I need assistance. I don’t know where to find it. I need a social worker who would help me solve problems I can’t solve on my own. At the same time, I am fiercely independent. I don’t like people judging me or shaming me or making decisions that aren’t in my best interest or expecting something in return that isn’t warranted. And so far, in nine years of being diagnosed with autism, I have found very few who understand this as a concept and have helped as a practice. Those people are gold to me. And I will probably let them down at some point, completely unintentionally.
I don’t know how to find a job. Or when I get one, how to keep it. Or when I keep it, how to manage the responsibility. If I could create my own job, it would be something having to do with reading a researching, predicting trends, and writing. But RAND doesn’t hire people with less than a Ph.D and no one is going to trust me with their investments. But I know that I am really, really good at this thing that comes naturally to me. If only I could find a way to meet the basic necessities (Melissa platforms included) while doing something that was rewarding and helpful. One can dream, I guess.