Five hours of neuropsych testing has confirmed what I’ve long suspected: I’m on the autism spectrum. I’m feeling relief, but also like it’s too good to be true, or that I somehow manipulated the doctor into giving me this diagnosis. There’s a whole community of “neurodivergent” people, many of whom don’t consider there to be anything wrong. They just have a different way of looking at the world.
That’s what a psychology grad student had said years ago at the psychiatry clinic on the edge of campus, right by the fraternity houses.
I line up my pill bottles in the bathroom cabinet. They don’t all fit on the same shelf. Seven, plus a prescription sleeping pill. Only three are psychiatric meds, though, and one prescription comes in two different bottles, because I’m at a dose above what the FDA recommends.
My mother carried a bottle of Depakote in her purse, swallowing one of the fat pink pills only when she felt she needed to. She acted like she was being persecuted because of her religious and political beliefs. But she cooperated enough to have a psychiatrist and a case manager—who she called a “good friend”—and to fill her prescriptions even if she didn’t take them. She refused to believe that she had symptoms of psychosis.
When I dropped out of college and started going to the hospital for outpatient treatment, they thought I was in the early stages of developing schizophrenia. The young female resident said, “We’re waiting to see if you get worse.” Even now, I’ll sometimes dream I see things no one else can, like some type of squid-like monster in the bathtub, and think in the dream that it means I’m schizophrenic, and try not to let anyone know I see anything unusual, as though keeping it a secret will keep it from being true.
The summer after what chronologically would have been my junior year in college, I was staying with members of Campus Crusade for Christ, and getting hooked into the conspiracy theory books they had on a bookshelf. I took these books and the theories within them about the Illuminati and one-world government and one-world religion to heart, while the girls said they just kept them around “to laugh at how extreme they were.” I was also upset that my friend had a boyfriend. I liked her boyfriend and was jealous. I told her I liked him, and she said she “felt threatened” by the fact that I said I wanted to be friends with him. Even though she’d tell people he was her friend, and told me she didn’t even think she liked him. I was angry and would yell at her. This understandably freaked her out. The combination of those two things pushed me close to the edge.
Then the final straw was when my ex-boyfriend started dating someone else. I was on Zoloft then. I told my ex that I didn’t think it was working. I’d gone on to him on the phone comparing my life to the movie Amadeus, which I’d first seen with him, saying that my former friend, the one who I’d had the love triangle with over her boyfriend the previous summer, was Mozart and I was Salieri. She had the talent and was also small and adorable and charming. Impish and childish. A sweet innocent little flower child. My ex-boyfriend stopped me and said, “Are you sure your medication isn’t working?”
He said I’d been talking for more than half an hour and still hadn’t asked him how he was. He said usually I’d call, and I’d “rant,” and then I’d eventually stop and ask how he was doing, and he’d say, “Doing ok.” It could be that the antidepressant was making me manic. That’s if it’s true that I’m bipolar. The neuropsychologist didn’t think I was. But that’s not his area of expertise. I said he hadn’t seen me off my meds. After my ex chided me for not having asked him how he was, and he got a painful “Sorry!” out of me, and I did ask, he said that he’d gone out and played pool with a woman he’d sat a shift with at the student-run crisis line where we met and would sit shifts together. I said, “I didn’t know you were a pool shark!”
A week or two later, he called again and said, after I’d probably ranted about my problems, “I have some news that I should probably tell you. I’m actually dating someone.”
I asked if it was the woman he’d played pool with, and he said it was. I think now that he was trying to break it to me gently. Like the joke where the guy has his friend watch his cat while he’s on vacation, and when he calls to check in, his friend tells him the cat died. The guy gets angry and says the friend should have prepared him in stages. First saying “He’s on the roof, but the firemen are getting him down,” then “He was injured when he fell, but a brilliant surgeon is doing all he can,” and so on. Then the guy asks his friend—or maybe it was his brother—how his mother is doing. “She’s on the roof, but the firemen are getting her down…”
While I was on the phone with him I took it well, but I started getting upset as soon as I’d hung up. I hadn’t learned the “skills” of “emotion regulation” then. I believed in being authentic to myself and my feelings, and being in the moment. The problem is I couldn’t get out of that moment, even when I wanted to. I didn’t know about the boring and irritating word recovery then. I wasn’t very goal directed. I’d come back to my room in my student apartment after an unfruitful evening at the library trying to work on my first paper for the Virginia Woolf class I was taking. If I’d stayed there and persevered, or at least until the library closed at midnight, he would’ve gotten my answering machine.
I couldn’t sleep. I felt like crying all the time but couldn’t. To make matters worse I’d just had my weekly counseling appointment at the student health center. I called a crisis line. Not the one where we’d met sitting shifts together, but a national one. I seem to have gotten the same woman who I’d talked to when I was upset about the fact that my ex and I were still cuddling, holding hands, giving massages, even kissing on the lips with no tongue, though we were “friends” now. I thought at the time I felt guilty, though now I think maybe he was using me, or maybe he didn’t know he was using me and didn’t mean to, or maybe we “used each other,” as his new girlfriend told me. It could be that I am asexual, and that was the level of physical intimacy I liked, while he wanted more. I’d been telling the woman on the crisis line about it, and she’d said, “So you don’t want him to be your boyfriend, but you’re acting like he’s your boyfriend?” Which I thought was judgmental.
This time when I said I wouldn’t get to see my counselor again for another two weeks, she just said, “That’s a long time.” And when I finally asked what I should do, she said, “Don’t call him.” In our training protocols at the crisis line I’d worked on previously we were taught not to give advice, so that was unprofessional of her.
When I finally got to see my counselor again, we made an appointment to see a psychiatrist who put me on Risperdal, to help me sleep, they said. And I was on Depakote, those same fat pink pills my mother would play her stupid games with. It made me nauseous. But I couldn’t even throw up to make the queasy feeling go away and bring relief. Once I was at a coffee shop across from the university. I felt a wave of nausea coming on so I ordered hot mint herbal tea and went down to the basement to lie in the nook. When I came back up for more hot water in my mug I saw my ex and his new girlfriend. I’d heard a cello playing when I was downstairs but now I didn’t find it’s sweet sad tones soothing. I put my mug in the place for dirty dishes on a counter by the cream and sugar and left.
At some point, I talked them into taking me off Depakote. I was still on Risperdal and Zoloft, and stayed that way as I left the Student Health Center when the director said I was beyond what they could do for people.
The director showed me what she’d written on the referral to the hospital: that I was experiencing symptoms of psychosis. I was angry and asked why she wrote that. She said it was so I could get seen sooner. That probably was the beginning of them thinking I was starting to get schizophrenia. And I was at least getting paranoid about the Illuminati one-world government and antichrist stuff I’d read about in the Campus Crusade house—holding the dollar bill up to my counselor, pointing at the pyramid with the eye, and asking, “How do I know you’re not one of them?” I was in my early twenties, and they thought it was my first breakdown. I think I always had the problems, something that may get addressed now that I have the official autism diagnosis. But often young people begin developing schizophrenia in their early twenties, often when they are away at college. And having that diagnosis probably was a lifesaver.
I may never know for sure, but I’d guess that the reason I got disability on my first try, within a couple of months of applying, was that schizophrenia, or at least psychosis, was in my chart.
When I was told over the phone that I was considered disabled and would be getting benefits, the man on the other end of the line said that I’d have to have my money managed. I said I’d always managed my own money and knew how to do it. “That’s not what your medical records indicate, ma’am,” he said. I asked what my medical records said, and he said he couldn’t tell me because it could be detrimental to a patient’s mental health to find that out.
The neuropsychologist asked me why I was on disability. I said I didn’t know, but said it was probably for schizophrenia or psychosis, which I don’t have. I said I would like to try to get my records to know for sure.
“Good luck with that,” he sa
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