rules

Separately from the political, as if we could separate from the political, is some news from home.

My son and I have been talking about autism. This is a big step.

I don’t remember when I first told him he’s autistic – maybe after an IEP meeting at school when he wanted to know what we were talking about, or maybe when discussing the medication he takes and why he takes it (I require his input and buy-in on decisions like medication and interventions). I know that I initially explained it pretty vaguely – I think I said “autism” is a word for how he sometimes feels and behaves, like when he needs to wiggle his body around a lot and he can’t stop.

He went with me this weekend, with my aunt, at her initiative, to a three hour workshop on “coping with challenging behavior”, designed for the families of and people who work with autistic people. He sat in the room and colored and read a book, and in the car afterward I told him autism affects people very differently  – some people are so affected they can’t speak, for example. He said “Oh” and “Okay.”

We stopped at Goodwill on the way home looking for house things, and he found a book he wanted to buy. It’s called “Rules”, and it’s a chapter book for kids. The narrator is a girl whose super-annoying little brother is autistic.

Right there in the middle of the Goodwill I said “I’m a little concerned about this book. I don’t want you to think everyone finds you annoying.”

And he said “I read it at school and I didn’t think that!” so we bought it.

Later he was telling me the narrator meets a friend who doesn’t speak. Turns out the kid in the book is nonverbal and uses a speech board with pictures and words on it to communicate, just like was discussed in the workshop.

Thomas does not “seem autistic” at first glance. He spent today in the office with me because school was out on a snow day, and he was for the most part quiet and well-behaved. He was quiet and well-behaved because I brought books and snacks and activities and we wrote out a schedule at the beginning of the day and I had a clock he could use to check the time against his schedule and we had a motivational structure in place. He has the quality of hyperfocus: difficulty breaking away from a task, requiring a lot of support to be able to stop doing something before he’s ready.

He doesn’t “seem autistic” because it affects everyone differently, it’s a spectrum, and we had a structure in place, and structure helps, and because for the most part our expectations about “high functioning autism” overlaps with our expectations for “young boys”.

At a doctor’s office two weeks ago I had a meltdown.

The doctor was new to the practice, I had not been there in a year because I had been working with a wonderful psychiatrist who had to move away recently. I was there because I needed a refill on my anxiety medication so I do not go through withdrawal and have to go to the emergency room and have an involuntary commitment because I cannot pay for that shit. I should be working with a psychiatrist, but there literally are none in town that take new patients so I have to instead make enough money to afford to drive three hours to see a psychiatrist.

The doctor was in the room for less than five minutes. When he asked how I was doing I launched straight into my full medical history, the ptsd and anxiety diagnosis, and how I’e tried literally every class of antidepressant and anxiety pill, and how the diagnostic codes on my bills are wrong I am not diagnosed with depression that’s why I’m not taking antidepressants, and why I haven’t been there in a year and what medication I was prescribed and that I need a refill because I’ve been between jobs so I haven’t had insurance so I don’t have a psychiatrist yet and beside there aren’t any in my town with availability so I just need a refill please.

He didn’t understand what I was talking about.

He said “I don’t understand what you’re talking about.”

So I tried again, slower – I was seeing a psychiatrist but she had to move away and I need a refill.

He asked if the medication was working.

I said no, because it isn’t.

He asked why I want a refill, then, if it’s not working.

I started to panic.

Because it’s not your job to do a full psychiatric evaluation, and I just got a copy of my billing history and y’all charged me an extra $150 the last time I talked too much and I can’t pay for that right now, I just want to not go through withdrawals, I will go through withdrawal if I don’t taper slowly off this medication,  I just need a few refills until I can find a psychiatrist and another therapist and get a plan in place.

He said “I’m getting the psychologist” and he left.

I was crying by the time she came in – because the doctor didn’t follow the script. I have a lot of scripts for interactions but I don’t have enough, and if they’re not followed I don’t know what to do. It’s like a black hole, like an abyss, it’s terrifying.

She agreed to have the doctor write a refill.

She wanted to know if there was anything else she could help with.

I said “I’m trying to get a referral for an autism evaluation but I know you don’t know me well enough to do that and I’m not coming back here so I have to find a new doctor and build a relationship and I don’t know what to do so that probably won’t work anyway.”

She said, “You don’t seem autistic.”

I had not made eye contact with her or the doctor. While I spoke my eyes were all over the room, I was waving my hands around as I spoke, and I refused to sit in the patient’s chair because it was too crunchy and that made me unable to think. I answered questions literally even when it was against my best interest, and my pressured speech worried the doctor, and when I wasn’t talking I was flipping the fingers on my right hand in a stereotypic movement that arises like a compulsive tic when I am anxious. I did not appropriately engage in small talk, and I unnerved them because I didn’t follow social rules.

But I didn’t “seem autistic.”

She does not specialize in autism. Her understanding of autism excludes high-functioning people, especially high-functioning female people. There’s a damn good reason an autism evaluation usually takes three fucking hours. Shit is complicated.

In the weeks since that appointment I have dedicated approximately twenty minutes every day to talking to myself in the car, rehearsing what to say the next time someone tells me I don’t seem autistic.

So I can have a script.

Because I’m on the goddamn spectrum whether you like it or not, and it has a significant enough impact on my ability to function that I would like a fucking diagnosis so I can either fix this shit or develop realistic expectations about my life because I am tired of getting fired from jobs or panicking all the time at work because I am on the fucking spectrum.

I don’t seem autistic in a ten minute interaction in the doctor’s office. I don’t seem autistic because I don’t tell you all the very specific rules I have for my clothing to avoid sensory over-stimulation. I don’t tell you about the scripts, about the meltdowns, about the bluntness that everyone else sees as criticism, about how I ruin every intimate relationship I have by being unable to understand subtlety, by speaking too directly, by taking things too literally, how I don’t understand the point of jokes, how I failed to appropriately follow social behavioral rules as a child and the kinds of trouble that got me into on a regular basis, how much I rely on routines and lists and schedules, how I am periodically nonverbal, how I communicate primarily through the recitation of facts with no concern for whether it hurts someone else’s feelings.

Today my son caught me talking to myself, thinking out loud. He smiled at me and I smiled back and we laughed, and he said “Um. Why do you move your hands so much when you talk?”

I remembered my friends in high school grabbing my hands because it would make me stop talking. Funny trick. Ask her a question and then grab her hand and she can’t talk.

I thought about my body language, how sometimes I use my entire body as a gesture when I’m speaking, how the vast majority of people don’t do that, how it’s always been a “quirk” I have. I remembered a friend from high school, wondered if he’s also on the spectrum, remembered how he’d talk your ear off about something he was interested in, how he’d sometimes zoom when other people were walking, sometimes jump straight up and down when he got excited. All the little quirks that, if you’re lucky, your friends accept. I thought about how I look to other people and how rarely I am aware of how I look.

I said “You know how I said autism affects people differently? For me it’s how I move my hands when I talk. You know how you have to finish what you’re saying when you’re talking and you can’t stop until you’re done? It’s kind of like that”

 

 

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