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.

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One thought on “On Diagnosis

  1. I actually feel like I’m quite lucky here in that the diagnosis has crept up on me without me looking for it. Or rather, I’ve been looking for something that explained me all of my life, had even found myself drawn to autism as an answer a long time ago, but I never followed up on it, partly because I lacked the confidence and partly because the literature at the didn’t really describe the Aspergers end of the spectrum. In the end, I found myself with an unwanted appointment with a psychiatrist and then clinical psychologist to confirm my ADHD diagnosis after moving country, and the psychiatrist was the one who brought up the possibility of Aspergers after the single consultation I had with him. Going into the appointment with the clinical psychologist with the knowledge that they proposed the possibility of this diagnosis, rather than me, makes it so much easier to face somehow.

    I agree with you though, after a month of considering this possibility and reading around it, I’ve already reached the point where I think of myself as autistic and don’t really question it. In order to actually own the diagnosis, and ever feel comfortable discussion it with people (and who knows if I will or I won’t at this stage), I do feel like I need to make it official though.

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