It Doesn’t Have to Be This Hard

I am returning to blogging (hopefully on a regular basis) after an exhausting semester. Five days a week, I did the following:

• woke up and walked to the bus stop
• sat for hours in classrooms where the lights were too bright and I had to interact with people
• did intellectual work that added to my mental exhaustion from social interaction and an overstimulating environment
• took the bus and walked home again

And then I frequently worked a dinner shift after that.

My friends have been telling me that I push myself too much. It hasn’t computed until just now. I’m used to struggling. It doesn’t feel like struggling anymore when you’ve been doing it for your whole life. And complaining about it seems silly, because busyness is admirable in American society, right? Going to school full-time and working 20-30 hours a week and volunteering occasionally means I’m some kind of superstar, right? And I can’t be struggling that much, because I have an A average. I’m doing pretty okay, right?

Last week, I underwent neuropsychiatric testing. I wanted to confirm all of the things I think I have, and I wanted to be able to get disability accommodations at school if I need them someday. Since I am reasonably sure I have a shitton of mental illnesses, I figured I might want to actually use the disability services available at school someday. If I land in a mental hospital again, I’d like my professors to have some kind of warning. I don’t want to never talk about this stuff until it’s too late.

I checked in to the office, and an assistant took my information, and I told him I wanted to confirm whether or not I had all of the things I think I have, including bipolar, ADHD, OCD, and autism. (I forgot to mention PTSD.) Then a doctor came into the room and asked me, “So when were you diagnosed with Asperger’s syndrome?” I told her that I’d talked about the possibility with a previous psychiatrist but that I wasn’t sure if they’d actually diagnosed me. She then asked me if I had any pronounced interests as a child. (She didn’t seem to know the term “special interest.”) I told her that yes, I’d had special interests my entire life, and listed some of them. She asked me if I had ever been into “any mechanical things, like trains.” I told her no, I was into more creative things.

She said, “Well, obviously you’re very intelligent. You had great SAT scores.” I wasn’t aware when the assistant asked me about those that they would have such a great bearing on how the doctor perceived me. She tested my motor skills, and she had me fill out a bunch of packets describing my symptoms, and she had me do some computer tests.

After she synthesized all of that information, she came back and told me I didn’t have ADHD. One of the computer tests, which involved matching patterns and shapes, stated that I had “good executive function” because I was able to match the objects on the screen well. I didn’t test as having ADHD, because another test involved wearing a headband that measured my movements, and I stayed remarkably still the entire time. I did test as being highly impulsive, but the lack of movement meant that I didn’t qualify. Perhaps my impulsivity was caused by anxiety.

Another test involved identifying facial expressions. I did abysmally. I was solidly in the red. It’s one of the worst test scores I’ve ever gotten. She looked at those results and said that that kind of thing was common for people “with mild Asperger’s or autism.” She said that the packet I filled out did say that I had ADHD, but a lot of the time people filled out subjective tests in a certain way because they thought they had ADHD, so she liked to go by the objective ones. She mentioned offhand that the autism packet classified me as having severe autism. She said that a personality test I filled out ruled out cyclothymia (mild bipolar) and OCD, but that she thought that cyclothymia was still a possibility for me. She said it should be taken into consideration as part of my treatment plan.

She didn’t mention the OCD-specific packet I filled out, where I was pretty damn sure I was scoring high and slowly discovering that I did some things that I didn’t even realize were OCD. Only the personality test, which was obviously testing me for personality disorders and only had a few OCD-related questions, was relevant. Somehow, its ruling out OCD was correct, but its ruling out cyclothymia wasn’t. Somehow, my self-reported symptoms on this personality test were relevant, but they weren’t on my ADHD questionnaire. I tested as having horrendous social acuity and severe autism, but I only had “mild Asperger’s or autism.”

I am angry and appalled, and I don’t know what to do with myself. I am pretty damn sure I have ADHD. I was able to sit still and take a quiz for twenty minutes because I was in choir for five and a half years. I am fully capable of sitting still with my head up straight, especially when an attendant tells me as they’re setting up the test that if I move my head too far forward or backward, it’ll invalidate the results. What I’m not capable of is controlling my impulses well, as demonstrated by that same test, and focusing on things that don’t interest me without using specific techniques. In order to take those tests, I had to read the instructions out loud to myself so I would be able to concentrate on and absorb them. I bounced my leg the entire time I was sitting perfectly straight for that one test. I fidgeted while I was talking with the doctor later. How did this test matter more than the evidence that was right in front of her?

Additionally, making me match colors and shapes is not a good way to assess my attention issues, executive function or lack thereof, and general cognitive weak points. I’m on the fucking autism spectrum. I am awesome with patterns. And I was doing these tests alone in a quiet room, with no distractions and no people around to think I’m weird because I’m reading the instructions out loud. But I guess even if I had done horribly on a different test, she might have ignored the results just as much as my autism-related tests. How can I have an incredibly low social acuity score but only have “mild Asperger’s or autism?”

She didn’t even ask me if I have sensory issues, which I do. In abundance. She didn’t ask me if I ever go nonverbal, which I do, just whether or not I’ve been able to build social bonds. I told her yes, because I’ve been able to find other people who are weird too. I told her that I hoped that didn’t sound like a bad thing to say about myself, because I didn’t think it was. I’ve just always been aware that I’m unusual. She seemed thrown for a loop, and she smiled nervously (I think—can’t trust my social acuity, can I?) and changed the subject.

Maybe most infuriatingly, she used the terms “Asperger’s” and “mild autism” when those diagnoses are no longer current. (She also used “mild Asperger’s,” which was never even a thing.) The DSM-V only recognizes autism spectrum disorder (ASD), because labels like high-functioning and low-functioning and mild autism and severe autism don’t take human variation into account. One can be able to walk into a doctor’s office, make eye contact and have a conversation, and then go home and scream in the car and flap ferociously from all the stress they’ve just been through. Hypothetically speaking, of course. A neuropsychiatric professional should not be referring to patients with outdated diagnoses. This is literally her job. There’s no excuse. And the fact that she thought that she knew me and all my struggles after a few hours is enraging me.

I walked out of that office having been told that I have really bad social anxiety and maybe cyclothymia, and that the autism thing could maybe be taken into consideration during my subsequent treatment. I have a follow-up appointment scheduled next week, and I plan to go and get a copy of my records and then never visit that psychiatric practice again. I want to talk to the doctor’s boss and file a complaint. There’s no form for that on the practice’s website. My friend called them for me, because phone calls give me horrible anxiety, and tried to get an email I could use. HIPAA doesn’t allow them to discuss things over email. I now have a number and an extension to call. I have poor executive function. I don’t know if I’ll get around to it, and I don’t know if calling will even help. I express myself in writing much better than I do over the phone. My complaints might not seem as compelling this way.

Now, I’m looking at my school’s disability support services website and realizing how much easier things could be. If I went through them, I could tell my professors that I struggle all the time and make them believe me. I could tell my professors that I go nonverbal sometimes, so please don’t call on me to answer something out loud if that’s happening today. I could tell them that group work stresses me out and interferes with my learning, because interacting with strangers and figuring out their facial expressions is hard, so please don’t try to teach me new concepts by asking me to discuss them with the person sitting next to me. I could tell them that I work and go to school full-time and sometimes it’s all I can do to survive all of that, so could I please get an extension on this essay so I have time to fully recover from my PTSD flashback?

I’m used to struggling. I’ve done it all my life. But it’s not normal to do this. And I wouldn’t have to, if people accommodated me. It doesn’t have to be this hard. I get good grades because I’m good at patterns and figuring out what professors want, and because I bust my ass. And then I go home and have no energy to write or play music or read or update my blog. And sometimes, I don’t think having good grades is worth losing the ability to do the things I love. And I think being successful isn’t worth struggling this much only to have people refuse to acknowledge how hard I’m trying.

So I’m at least going to start acknowledging to myself that I try really hard. I do. I work really hard, and it hurts, and it sucks. And maybe it makes me pathetic and self-pitying to say stuff like that, but my friends don’t think so, and I trust them more than the mean voice in my head. So good job, me. You try really hard. And it shouldn’t have to be this hard.