A Mid-Forties Butch Aspie
Makes Her Way

by MindWithoutWalls
(blog originally kept at WrongPlanet.net)

The Second Time Around - Part 5

The Fourth Appointment

Composed on July 11, 2012

  My journey began over a year ago, with the suggestion that my father might be on the autism spectrum, which started me asking questions about myself. Now that this is over, I think my year of stress is catching up with me. I'm having a heavy fatigue crash today, as well as a pain flare-up. But I've rested enough by now to be ready to post the results of the assessment. I already changed my Wrong Planet status in my profile yesterday, to reflect the results, logging in from my sister's computer because I couldn't wait. I was over there for my usual post-appointment debriefing, and I just had to do it then!

  It's needless to say, I suppose, that I was very nervous going in. As usual, I picked up my friend before heading over to my appointment. She could tell my anxiety level was up. My niece was with her brother, at dance camp, so it wasn't necessary for my friend to sit with her in the waiting room. I still wanted that friend along, though, for the comfort of consistency. But because I wasn't confident what the result would be, and because I was so afraid of unpleasant news, I didn't ask her to come in with my sister and me to hear the psychologist's conclusions. She was fine with that, reassuring me that she'd brought a book to read while she waited. The psychologist appeared at appointment time and said he needed about another 20 minutes to read the symptom list I'd given him at the second appointment. Hmmm. I'd made a few extra notes of things to tell him, so he let us step into the hall for a minute to tell him about the extra info. He then took the bit of paper I'd written them on, with my permission, and added it to my file. These were notes on my childhood play that I'd recalled after my previous appointment. We then went back out to sit with my friend for a while longer. During that time, the waiting room got very busy for a bit, and my discomfort grew. But I hung in there, even when someone sat near the clock, blocking my view of it, so that I couldn't tell anymore how much time had passed.

  The time eventually came, and my sister and I joined the psychologist in the usual room. I've always liked that it's been in the same room every time. I've also liked that it's been in a different room from my first assessment. That other one's not a room I'd bee too eager to see again. This one's even down a different hallway, in the opposite direction. Nice symbolism to that! So, anyway, we sat down together at the table and got started. I noticed he had a copy of the DSM IV. Much to my relief, he didn't keep me waiting for his answer. All the rest was the explanation. In his view, I'm a pretty obvious case. I fit all the criteria for an Asperger's diagnosis. I'm clear cut in every category, in my own individual way: social struggles, perseveration, stimming and doing things to make my environment be "just so". After briefly covering that, he moved on to what he'd ruled out and why.

  I don't display random hyperactivity. I get excited about particular things. I also have difficulties with my attention being pulled to things rather than pushed away from things. In other words, it's not that I can't focus because of distractions. It's that I focus on details excessively. I get hyper-focused. So, I don't have ADHD.

  I don't fret over things I feel a need to do or that I need to arrange in a specific way because of what I fear will happen if things aren't precisely that way. I order my external world to keep my internal world in order, so that I can cope and function better. So, I don't have OCD.

  My times of feeling anxious or depressed are also in response to specific events or situations, not just cycles that seem to occur on their own. Because they're triggered by where life and my brain's way of processing intersect, rather than either being more broadly associated with something my brain does on its own or limited to a reaction to trauma from which I could recover, a diagnosis of depression or general anxiety disorder would not be appropriate. I was misdiagnosed with these things in the past.

  We talked about what all this means with regard to disability. I don't currently display signs of Asperger's being disabling for me in a way that he's seen. But this is because I've managed to arrange my life in a way that both avoids many of the kinds of things that I would find overwhelming or impossible to handle and prevents others from being too exposed to my reactions when I can't deal with things. My fibromyalgia and earlier misdiagnoses of depression and general anxiety have qualified me for benefits that have made it so that I don't have to keep throwing myself into the work environment. Instead, I'm able to have both significant time alone to order my day in whatever way I need to and a social environment in which I have help, support, and understanding sufficient for me to get by. And I can exit most lengthy situations for a break anytime I feel that it's too much. So, the extent to which Asperger's is disabling for me is not apparent to anyone who doesn't know me well. What this means is not that he thinks I can work but that he can't tell whether or not I could from the information he now has. It also means I don't qualify for related services. I can, however, get the counseling I want to help me better understand and integrate the things I'm learning about how to deal with Asperger's, including how to better manage my relationship - which, I think, has been helped already by this process and will be helped further by the diagnosis and that which results from it.

  A couple of other things were brought up before we ended. One was that I was reassured, once again, that it had been a mistake to send me to the other psychologist the first time around. He'll never be allowed to see someone for Asperger's again, and he wasn't supposed to have done so in the first place. It's not his area of expertise. He's not qualified. It was a "clerical error", I'm told. That's fine. I'm satisfied that things have been made right. Nobody else will ever again have to go through with him what I did, and my assessment was done the right way this time - thoroughly, respectfully, competently, and without any unnecessary discomfort. This was all I'd wanted in the first place, and now I've gotten it.

  The other thing that happened was kind of neat. The psychologist said he found my written argument for why I saw reason to get assessed, which I'd given him at the first appointment, so moving and eloquent that he wanted to show it to someone else. He said he'd keep me anonymous, but that he really thought it was worth sharing. Who knows? Maybe it'll one day end up with at least bits of it printed somewhere to help people feel encouraged to go through the process themselves. Between that and the effort that will be made to see to it that people getting assessed there are always sent to the right person, I feel that my persistence not only has paid off for me but also is going to reach beyond me to benefit others. That makes me especially glad I didn't shy away from doing this before I even got started or quit after it went badly the first time.

  Later on, I was able to talk to my girlfriend - first on the phone in the afternoon, then when I got home in the evening. She was happy for me and proud of me. I love her dearly. I can't imagine how I could've gotten through this without her. She's been wonderful. She always is. In between that call and going home, I had dinner with both my sisters and their kids. My older nephew, who turns ten this August, was aware that we were celebrating something, and he asked about it. The three of us were able to give him a simple explanation about what Asperger's is; how it's similar to and different from the ADHD that my younger nephew, who will be nine in that same month, was recently diagnosed with; the benefits of knowing something like that about yourself or someone else, including how much nicer it is if you can find out when the person in question is still a kid; and how his understanding of his family members will help him be a better person in general, as well as a better friend, a better cousin, and even a better father one day. He's a thinker, and it was apparent to all of us that he was really considering what he was hearing as we said it. I'd been worried about how my older sister was taking all of this, but she was outstanding! Most of what got said came directly from her, and it was really beautiful. My younger nephew overheard all this and was, I think, getting a kick out of the fact that he and I can bond over this stuff. While I have no idea how much my niece, also with an August birthday that will see her turning seven, took in from all this, I have no doubt that she'll grasp these concepts quite well when she's old enough. I think she's going to grow up to be one tough advocate, whatever causes she chooses to champion in life. One day, everyone will know you couldn't want a better ally! All three kids are smart, wonderful human beings, full of creativity and love.

  Now, as to the matter of a little dessert to top it all off. Those following my blog will recall that I'd remarked on how much less likely it seemed to me that someone would get a cake congratulating them on having Asperger's than Ellen DeGeneress thought it would be to get one for being gay. (I've since learned from a Wrong Planet blog post that there's a book with a title like that - though I haven't read it yet.) So, the first thing I said to my friend after we got back to the waiting room was, "I want my cake!" Well, you know, I was really excited! So, then I had to explain that one, of course. Next thing I knew, my sister was offering to make me just such a cake. My favorite! Sunny yellow, from scratch, with chocolate frosting! It said, "Congratulations! You have Asperger's!" And, because it was my cake, I got to cut my piece right out of the middle. That meant slicing out the word "have", as it turns out. Whenever I look back on that, I'll always think about all that I have: people who love and care about me, who will help me and be there for me when I need it; a diagnosis that provides the answers I've been looking for; a chance to try to make the world a bit better in an area that feels like it's my issue in a deeper, more fundamental way than anything else ever really has, even though I've been politically active for various causes, including those of groups I actually belong to; and the opportunity to approach life in a new way that helps me gain greater access and enjoyment, now that there won't have to be quite so much misunderstanding and lack of information blocking my path. I realize that I'll still have to face a lot of situations in which others who are uninformed or misinformed will give me trouble. I'll also have to relearn how to manage sensory issues, being overwhelmed, the limits of my executive function, and other difficulties of which I used to be unaware. These things will be challenging. But understanding myself and no longer blaming myself for what I can't help will make a tremendous difference. So will being better understood by my family and friends. I feel as though something has really opened up before me - and within me.

  So many times, I've gone from blog post to blog post, ending with the words - or at least the feeling of - "we'll see". Always before, it's been with a sense of trepidation. Now it's with hope, relief, and joy. I'm not good at imagining the future, so I couldn't tell you what it will entail. But we'll see...

And now...
The Cake!!!

sunny yellow, from scratch, with chocolate frosting
(my personal favorite)

cake and photo
courtesey of my sister, Amy,
on the day of my diagnosis

~ MindWithoutWalls ~

The MindWithoutWalls Asperger's Syndrome Assessment Blog:
A Mid-Forties Butch Aspie Makes Her Way

2011, 2012

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