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The Second Time Around - Part 3 06-19-2012 08:45 am MindWithoutWalls's Blog
Worth the Trouble - The Second Appointment
I'm finding this second chance at being properly assessed to be much more intense than the first, even though it's certainly much less harsh. I think, however, that it's going to be much more productive as a result.
I delayed the second appointment to give my girlfriend time to go away on vacation to visit a friend. She was busy preparing for her trip immediately after my first appointment, then she was gone for two-and-a-half weeks. Then she needed to rest up and get settled back into work again before she could help me. I needed her to fill out a form the psychologist had sent home with me. This was a better one than the one sent home by the first guy, but it was still hard to do as designed. It was made for parents to fill out about their children (no surprise, given that adult assessment is so hard to come by). She had to adapt. Her way of doing so, in order to give complete information and clarify where the adaptations were made, was to put full answers into a text document instead of using the numbered rating system provided. I'm sure the psychologist will find it to be chock full of useful stuff.
My younger sister, however, managed the form as it was, though noting its shortcomings at the second appointment, when she turned it in. The psychologist agreed, but he also explained the need to have at least one form filled out the way she had done it. Good move on her part, because he needs to be able to mark a scale, and he can't do that unless somebody's done it the proper way. I'm glad I had two people working on this thing. Now there's some of everything to help.
While my girlfriend was working on her form, I was busy updating my Aspie list. I'm planning to replace my original list in this blog with the new, updated one. It' much better. but it was quite a task to do the revisions. In the end, I had eight double-sided pages printed out. I couldn't decide on anything to eliminate, so I left in everything, for thoroughness. I also expanded the scope of the description in the introduction, to show that not all the items it contains are necessarily directly Asperger's related. Some are sort of peripheral, just to give further insight into how my mind works. And today, I've even thought of two more things I'd like to add. The psychologist has assured me that he'll read the whole thing. Good thing it's his job, or I can't imagine how he'd have the time or interest to take all that on!
The rest of the appointment was full of Q and A about myself, some of which he'll also find answers to in my list. The whole appointment lasted an hour, just like the last one. I was exhausted by the end of it. But it was well worth it to have gone through it. Before I left, he told me I get to have a total of four appointments, not just three. We'll focus on my history next time. Every appointment will be a full hour. This guy isn't shorting me in the least, it seems.
While going through this, however, I've met with some challenges. Here's what I've had to say in a post about it elsewhere on Wrong Planet: As I go through the process of getting assessed, I've been having mixed emotions. I'm excited by the possibility of having my questions answered and unaccounted for things explained at last. I'm a bit worried about encountering more difficulties as I'm open with more people over a longer stretch of time (a "coming out" issue I started getting familiar with when I came out as gay at age 15). I'm concerned about what it might mean if Asperger's is not the reason for things and what the reason then might turn out to be (a possibility I must consider in order to be sure I'm being as forthcoming and honest as I must be to get the assessment done right and to get the most accurate result). I'm digging up old memories (my own and those of others) that are sometimes embarrassing to me and discovering I have something that I thought I was healthy and mature enough not to suffer from: a sense of shame I must now deal with in order to move forward and take advantage of whatever I learn as best I can. I'm uneasy and stressed through much of this, and some of it is kind of scaring me. A diagnosis will mean many things are not my fault, so I can let go of a sense of moral failing for not having tried hard enough. But, then, there goes any hope that, if I just push harder, I can make myself not have these problems.
I've recently run across a song that's helping me cope. I think it's actually about gender identity and making peace with a body that doesn't match one's internal self-concept. But it also works for the situation I'm in, after having lived to age 44 without having had a diagnosis and now dealing with the distinct possibility of getting one. The song is "She's Got to Be", by Amy Ray, from her 2008 album, "Didn't It Feel Kinder". I don't have the album yet, but I found it in a video, also from 2008, on YouTube. The video begins with an interview, and I really like this version of the song. The song starts at about 2:50. You can hear the words pretty well, and the atmosphere is easy to deal with. I'm finding that particularly important as I try to cope with everything that's going on. The more I'm dealing with, the more overloaded I get. That makes having the video be easy to watch and listen to essential.
I think "She's Got to Be" really captures the contradictions and uneasiness I sometimes feel about this process I'm going through, as well as my making peace with the whole thing as I go along. I also tend to believe she and I have a similar concept of our own gender, so I'm enjoying the fact that this song can address both issues for me. The interview is also a nice one. You can find this video here: Songs That Help You Cope
(By the way, while I've got your attention, I'd like to take a moment to mention a couple of articles I was made aware of on Twitter that I've found relevant to my situation: The Real Autism Epidemic and Autism and "Good Job")
So, here I am, awaiting the third appointment. That's next week. When I wrote about my first assessment, I kept much more on top of things, in terms of documenting the process in my blog. Not so this time. I'm finding it's difficult to manage such an intense experience at the same time as keeping up with my new chore chart (which is proving to be very effective for both housework and yard work), holding Middle Eastern dance and music practices at our house every other week, and getting anything done with regard to my exercise program and private drum practice. (Forget about composing anything right now!) Add to that my hard copy book reading and keeping up on my general online activities, and blogging just gets to be too much sometimes. I'm having to wait a bit longer than before to catch up, especially given the amount of time I need to sort of "come down" and process everything that's happened. But that's okay. I'm still committed to this documentation. I hope it will be useful to someone one day, maybe when they or someone they love might be going through this.
One of the things I was asked in this most recent appointment was what my goals are for the future. Now, this kind of thing is not a strong point for me. I have an easy time using my imagination, but I'm not terribly good at picturing the future. I never have been. Even as a child, I had no trouble pretending to be any number of things, but I couldn't think of anything I wanted to be when I grew up, even as a teenager. I find the times to come in my life to be as confusing and hard to guess at as other people's feelings, meaning, and intent. But I have decided on two things. One is that I want to do more musically, and I've already been taking steps in that direction. I'm first, last, and always a dancer's drummer, but I also like to play with other musicians, regardless. So, I'm attending open jam sessions at a nearby art gallery/shop on Sunday afternoons. I also intend to resume participation in the open drum circles on Wednesday nights at a local park, now that I know they're back out there for the summer season.
The other thing I want to do is conditional, though. If it turns out that I really do have Asperger's syndrome, I want to find some way to help other adults who are getting diagnosed late. I want to look for outlets to share my story. I want to encourage people to get tested if they have hope that it might answer some of their lifelong questions and help them solve some of the current riddles of their existence. I want to try to do something about the appalling lack of knowledge about what Asperger's might look like in an older population full of diverse individuals with a wide range of coping and masking skills in place, succeeding for them to wildly varying degrees. I want there to be more support for those who might find the assessment process hard to initiate, because places that will do it properly can be hard to find; intimidating to contemplate, because it opens up old wounds and all kinds of possibilities for what might be going on, only some of which are all that comfortable to face; and anything from stressful to embarrassing to outright frightening to go through, because of all that must be revealed in order to find the truth and all that it means. I don't know how I'll go about this just yet, but I'll be looking for a way that will make the best use of my strengths. That is, of course, if Asperger's really is the answer to my questions. And that has yet to be decided.
Two down, two to go, folks! Stay tuned...