Meltdowns

I’m sorry for my long absence. In the first little bit of the year, I’ve had an extremely rough time.
I’ve had to make one of the hardest decisions of my life. I cut off all contact with my dad. I can’t explain in a single blog post why that was necessary; I’d have to tell you my entire life story. After a lot of thought and analysis, I realized that I simply can’t be mentally and emotionally healthy while having a relationship with him. Since then, I’ve been mostly recovering and trying to keep up my schoolwork as well as I can. I’ve had little energy for anything else, thus the lack of activity here.

I started this post a few days after the first meltdown. I couldn’t finish it then, so I’m coming back to it now.


Meltdown 1

Boyfriend and I come home after a terrible visit with my dad. After being picked apart, disrespected, mocked, invalidated, and made to feel like a worthless mess, I stand up and demand to be taken home. My dad drives us home in silence while I internalize all of the messages I’ve received, both explicitly and implicitly, that I’m a useless and ungrateful failure.

We get home.

I sit down, in silence.

Then I start telling boyfriend what I think. I’m a failure. I’ll never amount to anything. I’m not really autistic, I’m just a lazy girl who doesn’t want to be responsible. I’m a liar and a fake, and I’ve been fooling us both all along. You deserve someone better, and you should leave me before I ruin your life. We’re going to be poor because I’m useless. None of the things I’m feeling are real.

He counters. Calmly, he uses logic to refute my statements. You couldn’t possibly fool me so completely – you’d have to be a genius at acting. We’re not going to be poor, because I can work and you’re going to college and you’re good at what you do. Besides, we don’t need a lot of money. You’re amazing and you’re exactly what I want and need. You really are autistic, and your thoughts and feelings are real. I can see it. There’s no way you could pretend to be autistic this well. You’re a good person, and we’re going to have a good and happy life.

I sob uncontrollably. Sobs that feel like being turned inside out.

He holds me with firm, even pressure. I begin to quiet. But I’m still very conflicted. I ask again. Am I a failure? Am I really autistic? He answers all the questions I can think of, with his calm and patient logic. He tells me how much he loves me and that he thinks I’m amazing.

I feel a bit lighter. I squeak and bounce. This feels good. I do it more. I squeak and bounce and flap around the house. Then, I sit in my office chair with my knees up to my chest and rock back and forth. “I’m a (my name) ball”, I say. Then I say it again, and again. I sing it in various tunes for a time, while rocking and twirling my hair. Boyfriend encourages my stimming.

I start to want to talk about what happened again. I want to process it. I try to ask boyfriend what he is thinking, but the words won’t come out. They’re in my head, neatly ordered in their sentence, but when I try to speak them, all that comes out is “think think”. I can’t make my voice do the inflection that indicates a question. I pull up a google doc, and write that I can’t talk and need to type instead. He asks if he should type as well, and I type that it’s okay if he just talks. We carry on a conversation like that for quite awhile, trying to make sense of what happened and trying to regain my grip over my own reality. It’s hard, and I have to fight for it, but I begin to be able to think rationally again.

Eventually, I just start talking. I don’t really think about it; it just happens. My boyfriend asked me something, and a word popped out of my mouth. I’m not totally okay yet, but I’m beginning to feel like me again. I keep stimming all night and end up calm enough to sleep.

 

Meltdown 2

Only days after the first meltdown, boyfriend and I are awoken at 8 in the morning by an unceremonious knock at the door. It’s Friday, and our day off. Boyfriend scrambles out of bed to get the door, and we find out that our landlord decided to install all new windows in our apartment that day. Yes, without sufficient notice and in the middle of winter.

At first I start panicking. I hyperventilate and pace around the apartment while waiting for the workers to arrive and begin the installation.

They arrive, and I run into the office to hide. I feel numb at this point, and sink into myself.

Then the noises start. I don’t know or care what they’re doing; all I’m aware of are the painful noises bursting into my head and invading my consciousness. The cold slowly creeps in, and soon our entire apartment is freezing.

They begin working on the office window. I run to the bedroom, only to find a gaping hole and searing bright light.

I try to go back to the living room, but it’s not safe either. It’s filled with strange men and pounding noises and vicious light. Our furniture is moved and the room is unfamiliar. There is no safe place.

I freeze in the hallway. I am a scared animal with nowhere to run.

My eyes dart everywhere, avoiding the light and looking for a place to hide. I feel the workers looking at me, and am dimly aware that they probably think I’m crazy. But I can’t look at them, or even acknowledge them.

I realize then that our kitchen has no windows.

I dart through the hostile living room to get to the kitchen. I might’ve nearly run into someone, but I’m not sure. I couldn’t process what was going on around me.

In the kitchen, I sit in a ball on the floor with my knees pulled tightly to my chest. I plug my ears, close my eyes, put my head down, and rock back and forth. After a little while, my boyfriend finds me and brings me a blanket (which I promptly put over my head) and ear plugs. He sits down with me. We stay like that for awhile, I don’t know how long.

Finally, the job is done and the workers are leaving. I’m cold, disoriented, angry, and sad. I begin to realize I’m hungry too. My boyfriend and I decide that the best thing to do was to get our environment back to normal, and then eat our normal breakfast. We did, and then we were mostly okay.

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On Diagnosis

One of the first things my Mom asked me when I told her about my autism discovery was: “Why do you want to get diagnosed?”

Huh.

At that point, I hadn’t even considered not getting diagnosed an option. Perhaps it was a bout of black and white thinking, but I thought that if there was something about me that could be diagnosed, then it should be. Her question challenged me to think about diagnosis in a more meaningful way, and I’m glad she asked. She encouraged me to think of diagnosis as a choice rather than a requirement, and at the same time validated my self-diagnosis. Well done, Mom.

Even after that, though, I decided that I do want an official diagnosis. Still, I was at least able to feel that my self-diagnosis was worth something, which gave me time. I clearly needed a lot of time, considering that I first discovered my autism in January and I still don’t have a diagnosis. Since then, I’ve come up with quite a few reasons why a diagnosis would be right for me:

 

Validation

While I’m generally very confident in my autisticness, I sometimes have low points of insecurity and emotional desperation in which I wonder if I’ve simply fabricated this whole thing. I think that maybe I am indeed just a lazy, selfish girl who doesn’t try hard enough and should just learn to tough it out. And I’m just making excuses to avoid living a normal, productive life. Because I’m really an irresponsible person. Since I’ve been told as much in various ways throughout my life, that’s a message that has stuck with me. Having a diagnosis would be hard proof that I could use in those moments to drive that destructive voice away. And hopefully rob the thing of some of its power so it can’t come back as strongly the next time. I think in part, it’s about aligning my self-image with my actual self.

 

Accommodations

There are some things I’d want, especially when comes to employment, that might be hard to get without a diagnosis. For example, I want to be able to work from home. I couldn’t handle actually going to work everyday, and I wouldn’t be very productive if I tried. But at home, I’m a very fast and productive worker (and I have experience freelancing and going to school online to back this up). While I know that every autistic person doesn’t need this particular accommodation, I think my needing it would make a lot more sense to an employer if I had a diagnosis.

 

Not Needing A Disclaimer

I want to be able to say “I’m autistic” without also having to add in “well, I’m self-diagnosed, but I’ve done a lot of research, and poured over the diagnostic criteria, and everything fits so well, and the people who know me best agree”. While I know how thorough I’ve been in my self-diagnosis (seriously, we’re looking at hundreds of hours of research and analysis here), others do not. I’d like to stop feeling like I have to convince people.

 

Professional Analysis

Since I don’t know exactly how the process will go, this is more of a hopeful reason. I’d like whoever diagnoses me to give their own observations and analysis of me. A cognitive profile of some sort would be great; I just find that sort of thing so interesting, and I think more knowledge is always good. Plus, for most of my life I’ve wandered around really not knowing how I present to others, and a diagnostic situation seems like a good place to ask and get honest feedback.

 

But that’s not all to say that I don’t respect self-diagnosis. Far from it. In these past 11 months since I diagnosed myself, I haven’t been walking around thinking that I “might be” autistic; I’ve been walking around thinking that I am autistic. In fact, it’s become a big part of my identity. Sometimes, I even forget that I’m not professionally diagnosed. So, I fully respect those who feel that getting a diagnosis is not right for them, and I don’t consider the self-diagnosed to be “fake autistics”. I think if someone gets really into learning about autism, analyzes themselves critically, and really sees themselves in the stories of other autistic people, then they’re probably autistic. And since there is no standard chemical test or brain scan for autism, that’s about all the confidence we can have right now anyways. Everyone should simply do what they decide is best for them.

My boyfriend was actually at first going to remain self-diagnosed, even though I had decided I wanted a professional one. Fortunately, he doesn’t suffer from the same self-doubt I do. He just looked at it logically, and everything pointed quite clearly to him being autistic; that was enough. He recently changed his mind, though. Now, he’s found that there are some accommodations he’d like at work, and wants a diagnosis to help him ask for them.

I’ve been thinking a lot about diagnosis lately, and I’ve began more intensely working on getting one. A large part of that work has been meticulously going over the diagnostic criteria and supporting the things that fit with real world examples – I’ve a few pages of notes on it now. I want everything written down in case I freeze up and can’t speak well in the interview. An even bigger part of this work has been simply mentally preparing myself for actually making contact with a professional and getting this officially started.

Still, I’m scared. I’m scared of the logistics of getting diagnosed. Of making contact and scheduling an interview and getting on the bus and going to a new place and meeting new people and talking about myself. I’m also scared, to a degree, that I’ll be told I’m not autistic and then I’ll have to face that it really was all in my head.

But, I’m getting braver. This thing is starting to reach some sort of critical mass where the drive to have a diagnosis is bigger than the anxiety surrounding it. I think I’ll be able to do it soon.