I’ve been somewhat putting off writing about my evaluation and the process of getting diagnosed. This is partly because I wanted to give some background about myself to start with and I’ve now done that. Also, the evaluation process ended up being much more difficult for me than I had anticipated and I needed to recover from that before publicly telling the story.
Anyhow! My evaluation story:
Earlier this year, I got insurance coverage for the first time in many years. It took me about two months after getting the coverage to realize that this meant I could probably afford to get evaluated! So, after finding a place that did adult evaluations and took my insurance (yes, I realize how fortunate I was to find both), I picked right back up where I’d previously left off.
Before I began actively preparing for the evaluation, I did a great deal of reading. I don’t like being in new situations and I’d never had a big evaluation before, so I read everything I possibly could about the process of being evaluated and how to prepare for it.
This Musings of an Aspie blog series was particularly helpful to me as I began the process. I also found a great deal of comfort by reading Rhi’s Autism and Expectations blog in general. I first discovered her blog by seeing this amazing post come across my Facebook feed. After that, I eagerly read everything she had written up to that point and have followed her posts pretty regularly ever since.
One of the things suggested by Cynthia Kim at Musings of an Aspie was to make a list of ways one fits the official criteria. So, in my case, I got out a blank journal that had been sitting around my house for years because I love buying blank books and nearly always have a surplus. Then I copied out the DSM-V criteria, writing out each section on its own page with several blank pages between each section.
I had, thankfully, journaled four years ago about many of the memories that fit the official criteria, so I began by sorting those into the correct sections. By reading and copying out the memories I had written previously, it was as though I’d opened a portal. The more I remembered, the easier it was to go back and remember more.
For me, remembering is a pretty intense process so this preparation took a great deal of energy to complete. When I remember past events, I am very nearly fully present in them. I suspect this is partly because I tend to repeatedly go over recent events and experiences in my mind. Those experiences thus get relived multiple times soon after they occur and stick with me quite well after that.
Generally speaking, when going back into my memories, I can remember where I was, what direction I was facing, how it smelled, what music was playing, how I physically felt, and less often how I felt emotionally – but if I did have strong and identifiable emotions at the time then they are present when I remember as well. Sometimes I remember conversations verbatim while other times the words aren’t there any longer at all.
I still had a great deal of self-doubt and I was trying to avoid confirmation bias, so I was meticulous about corroborating my memories with others, whenever possible. I confirmed my memories with others, in particular, whenever I recalled events from when I had been very young, overwhelmed, and/or confused.
This memory-gathering and recording process took nearly two months. Part of my purpose in taking my time and being so thorough was so that I’d have a roadmap and wouldn’t lose words during my evaluation intake appointment. Even if I did freeze, I would at least be able to hand them something containing much of the important information.
After all, I’d had experience talking to psychs before, during college, and what I’d discovered from those experiences was that I could almost never think of what I wanted to say in the first place nor could I often manage to pull up the pertinent words and/or memories when they asked me questions.
Freezing and losing words were not things I wanted to have happen during this evaluation. While that predicament might provide more in person evidence of my communication difficulties, I was of the opinion at the time that the negatives of not being able to effectively communicate with words would outweigh the positives of providing a live demonstration and thus did my very best to try and prevent it.
Once my appointment was made, I typed up my notes and gathered together all the relevant information from my research and online testing four years earlier.
Once whittled down from 33 pages and printed out, I had 21 pages of single-spaced 12-point font containing both specific and general memories that directly fit the DSM-V criteria. I included all of my online test results beginning with the very first one I took before I’d actually known much of anything about autism and when I was fully expecting to get neurotypical results. I noted other facts of interest such as my face-blindness and sensory issues. I also included corroboration notes (mainly from older relatives), where applicable.
I had already talked to my husband about coming to the intake with me. We have known each other since we were both 12 years old and he could confirm that I was accurately portraying my difficulties, at least from that point on and from his perspective.
I was finally ready to make my appointment! However, despite all my preparations, I was still beyond nervous once the appointment day/time was set.
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