Chapter Thirty-Nine: Being Diagnosed with Asperger’s Syndrome
And now, digging back into the heart of my Aspie journey:
| Q: | How did you find out you have Asperger’s Syndrome, and what was it like to get diagnosed? |
|
| A: | Ah, yes. Coming to understand about my Asperger’s and then being diagnosed with it was a very, very strange thing for me. Growing up, as you know, I’d never even heard of the word Asperger’s, let alone had any notion of what it was or that I, of all people, could have such a “syndrome.” A label on me sounded ridiculous. I was highly intelligent, logical, and capable of achieving in ways above and beyond what most people can achieve. I felt more like someone extraordinary or exemplary than someone with a “syndrome.” So, as you can imagine, this discovery process has been a rapid learning experience for me over the last five or so years. |
I first heard of the term Asperger’s when I was around twenty-seven, while hanging out with my girls’ group at one of their weekly gatherings. The group was having a discussion in which we were given questions to prompt us to talk about our life experiences and how we handle particular situations. I can’t remember the specific topic now, but something about my inner Aspie must have come out, because my friend Emma, now a child psychologist, asked me if I’d ever heard of Asperger’s Syndrome.
I remember after she told me briefly about it, she picked up a coffee cup and said, “Raaa, I’m a dinosaur. I’m going to get you,” (or something like that) advancing the cup on me. It was a test to see how literally I would take it. As a child, perhaps I wouldn’t have found it funny and would have told her flatly, “That’s not a dinosaur. It’s a cup.” But as an adult who is well versed in working with kids, I understand pretend play and appreciate a quirky sense of humor. So I laughed at the bizarre gesture and just said, “Okay, sure. It’s a dinosaur.”
We didn’t decide one way or another that night whether we thought I really had Asperger’s, but Emma had explained it a little and planted the seed in my head. (Not literally!) I walked away thinking perhaps I might have a “little bit” of it. It would explain a lot of things. But I didn’t take it too seriously. After all, the way she’d described it was more textbook Asperger’s, and I felt far more adapted than that.
Not too long after this discussion, I looked up Asperger’s Syndrome on the internet and found the DSM-IV definition and some general information on the topic. But what I read sounded serious: descriptions of people with a debilitating behavioral disorder. I thought, “Well, that doesn’t describe me. I’m ‘normal.’ Perhaps I share some of these traits, but I’m not severely disabled or ignorant on how to act around others. This is not me.” So I closed the book on the subject and didn’t revisit it for several years. And that was that.
Then one day, quite a few years later, long after I’d ceased ever thinking about the topic, I remember sitting in my house in Houston, really struggling with the isolation and boredom that had come from moving to a place where I was failing to establish solid friends. This is the place where I left off in the last story chapter.
I was trying to watch TV and turned on a psychological reality series called The OCD Project, a show where the participants lived together in a house and were counseled to overcome their various OCDs, when strangely, one of the participants, a man diagnosed with Asperger’s during the series, got me thinking again about the possibility of having Asperger’s myself.
The way it triggered the thought was a little odd, because the man was nothing like me at all. He was extremely unusual in his mannerisms and had trouble understanding and accepting some simple concepts and tasks. He had satanic delusions and severe OCD. If anything, seeing this character should have perpetuated my notion that people with Asperger’s are “weird” and that I couldn’t be one of them. But something he did resonated with me, and it resonated strongly. It was something about the way he resisted emotional counseling.
It took me back to a time a few years earlier when I’d tried to go to a counselor myself to see if they could help with work and social issues. I remember explaining to the man I saw that, “While I function well on the surface, I know underneath, I battle with the need to constantly analyze to work out what people are thinking of me and respond appropriately, and social interactions are exhausting and sometimes stressful.”
I’d come up with a theory that maybe I had social anxiety, which may have been true to some degree back then, but I’m sure nowhere near as severely as my Asperger’s makes it seem. I was hoping that if a counselor could make it “go away,” then perhaps work and large social situations could become comfortable and bearable for me.
The counselor got me to take a few social anxiety quizzes, and from his responses, I think he concluded I had notable social anxiety, although I think half of what he was picking up was my Asperger’s tendencies and the side effects of those.
With questions like, “Do you ever feel overwhelmed or ‘stressed out?’ Do you ever fear that you will do or say the wrong thing in front of other people? Do you feel trapped in or avoid social situations where it might be difficult to escape, such as in a crowd? Do you ever push yourself to do more, even when you’re physically and mentally exhausted?”—it’s hard not to mistake some of the Asperger’s traits for anxiety if anxiety is all you’re testing for. There is a huge overlap.
After the testing, he then went on to “treat” me with a range of exercises that somehow seemed to only frustrate and tire me. He asked me to make lists showing each time I had negative feelings for a week and describe the self-talk behind each feeling. I didn’t know what to write down. I knew when I was starting to have negative emotions but not how to identify the emotion or what was causing it. It usually just stems from exhaustion, overstimulation, and/or frustration slowly building up. (I know that now.)
I wrote down a few thoughts that were very minor, because I felt like I had to do the homework and write something. It was almost like making it up. I really didn’t have any negative self-talk that I dwelled on. He then made a big fuss over each thing I wrote down and wanted to dig deeper into the emotions behind them. All I could say in response was, “I don’t know,” and, “No, not really.” I felt tired of it and resistant. I wanted to tell him, “Stop wasting my time with this crap.”
He asked me to role-play scenarios with him. A tall, lanky man with hairy legs, he would cross his legs and say to pretend he was a female friend and make dialogue with him. I couldn’t do it. How could I pretend he was someone he wasn’t and then imagine how I would feel in the situation? I couldn’t formulate a realistic response, because I had no idea how I would feel if a real woman said these things to me.
The ridiculousness of him trying to act the role made me want to laugh and unable to take it seriously. He had hairy legs for heaven’s sakes! He told me to try. I felt like a child being scolded. His insistence I “try” when I just couldn’t imagine the scenario upset me and made me feel belittled. All I could see was a big, hairy man with his legs crossed like a woman being stern with me. I wanted to laugh and then cry as my laughter was frowned upon.
And so it went on for six sessions, exercise after exercise that were all similarly ineffective and frustrating for me. I found myself not wanting to go and starting to feel hostile toward him. This reaction surprised me, because I’d come to him genuinely wanting to learn, and I’m usually fascinated about psychology and learning about my brain. I’m an obedient type who does my homework, not the type who rebels and defies the teacher. Yet here I was, becoming increasingly frustrated and resistant.
After the six sessions were up, I told him I wasn’t comfortable with a male and wanted to transfer to another counselor—a neurotypical-style white lie—so he gave me a reference and wished me well. Of course, I never went. I decided by this point that I was better equipped to deal with my own issues than waste money on exercises I was only going to resist. I gave up the idea of seeing a counselor at all. After all, I think I do a good job of finding the right balance for me on how hard to push myself. So I decided I didn’t need to do tiring exercises to achieve this.
In a way, I was lucky that my counseling experience was by choice and I had the right to walk away. I wonder how many poor teens are placed into such counseling by parents and loved ones only to be forced to try and do things they can’t do and made to feel “bad” or rebellious for not taking it seriously or not trying. I can see how it would be incredibly deflating.
Coming back to the point in time where I was watching The OCD Project, I was amazed to see another man having the same responses to the counseling that I’d had. I watched him try and argue logically why the exercises were a waste of time or try to alter them to make them work for him only to be told to “just try it.” The counseling was based on emotions, not logic or theory, and it simply wasn’t hitting home.
When I saw him removed from the series and diagnosed with Asperger’s, the lightbulb suddenly came on for me. Maybe I have Asperger’s too. Maybe that’s why all this emotional crap felt pointless and impossible for me to do: it’s not tailored to a brain like my own.
After that realization, I went immediately to the computer—mid-episode, in fact—and started researching Asperger’s again. It was a moment of sudden fascination. I needed to know. This time, I found forums and discussions by real people with real Asperger’s experiences, not just behavioral summaries written from neurotypical perspectives. The real Aspies were not saying:
|
They were saying things like:
|
The more I read, the more I realized this really is me! I joined one of the forums and became an active participant and began to learn more and more about what Asperger’s really means.
A few months after this initial discovery, I decided to seek the counsel of a psychologist for a professional diagnosis.
The decision to have myself diagnosed wasn’t one I made easily, and reading online, I saw a lot of warning against it. People were warning of being forced to reveal the diagnosis when applying for jobs and being discriminated against for it. They were saying it doesn’t help socially to have a label. And, of course, there’s the fact that it doesn’t actually change who you are. With or without diagnosis, you are still the person you were yesterday, so why do you need it?
However, I reasoned that I was never going to be okay in a job where I had to suppress my Asperger’s. My past experiences have showed me that it is not sustainable for me to work the typical way. If I ever did apply for a job again, it would have to be with full disclosure so that I could have the necessary accommodations made for me and the political expectations of me be more realistic.
As for friends, I could always choose whether I wished to tell them or not. There’s no requirement there, and if anything, having a formal diagnosis could only help in terms of getting relatives or skeptics to believe me. Though it turns out that getting people to believe me has been no problem. Most people I’ve told have responded with comments such as, “Ah, that makes sense!”
Mostly, however, I sought diagnosis because something inside me just needed to know for sure. As irrational and “unlike an Aspie” as that sounds, there was a strong emotional driver there for me to know myself and be validated. I felt as if I couldn’t rest until I knew. So with no strong reason not to get diagnosed, I yielded to that feeling. And for one of the few times in my life, I made a purely emotional decision.
Upon selecting a counselor, I was careful to look for someone who had knowledge of adult Asperger’s Syndrome. It turned out this was a tricky thing to find, as most experts seem to specialize in children. Online, I was reading that even those who are experts in childhood Asperger’s aren’t always good at picking up the more subtle adult form of the condition.
One lady wrote of how she was dismissed without even being tested because a counselor told her she was “too normal to have Asperger’s.” Another man wrote of how a general practitioner had said to him he couldn’t have Asperger’s because “people with that syndrome collect shiny metal objects,” and he didn’t do that. What are we, nesting birds?
However, despite my fears of being turned away for acting the normal role too well, I was eventually directed to a lady who was very experienced in counseling adults and even women with Asperger’s, and I had a surprisingly pleasant experience. She didn’t just take me at face value. She asked me some deep and detailed questions that showed a real knowledge of where Asperger’s really presents itself.
After a short phone interview, I set up my first appointment for the two-stage diagnostic process. Step one was a detailed discussion to understand my background and determine whether Asperger’s was likely, and step two was the detailed testing.
My first interview session with the doctor was profound. Though I was new to the idea of having Asperger’s, she got me thinking back into my past and realizing so many Asperger’s moments I’d forgotten about. So many things started to make sense (i.e., many of the random stories I’ve presented in this book!). It was like having the biggest realization of my life. In only a few short hours, I was given answers to questions I’d been unable to answer for years.
She explained to me what that feeling was that I’d been getting in the workplace: the buildup of frustration and stress from overstimulation and all the irritating things that I had to suppress and not react to during a typical day. I’d come up with so many possible explanations for it over the years, and none had been even close.
She told me it wasn’t the first time she’d heard this story. What an amazing feeling to realize that there are others in the world who have gone through what I have! It was the final validation that it’s okay for me to find these things difficult.
I was finally free to say no, I’m not prepared to suffer this way anymore, and I have a valid reason for it. I walked away from the session buzzing with realizations, new thoughts, and memories, and the high of feeling like I was finally free. I don’t think I slept that night at all.
The second session was simpler. I came in, sat down at a table, and filled out a multitude of tests that the doctor had selected for me. Most of the questions required me to rate on a scale how much I agreed or disagreed with a statement. I found them easy to answer. There were a few short-answer questions that took me longer, basically to establish my history.
Some forms asked for parents or people who knew me growing up to write a few words, but I had nobody to complete these, so I had to guess myself from what I remembered of my childhood. The whole thing took me three or four hours, and then I went home and waited for the results.
After some weeks, the results arrived in the form of a long letter on a company header, detailing my history, the results of the session, and finally stating, “Taken together, these results indicate significant anxiety and depressed mood together with historical and current evidence to support a diagnosis of Asperger’s Syndrome.” At first, the format of the results threw me. I guess I was expecting a big certificate stating, “Michelle Vines has been diagnosed with (drumroll!) Asperger’s Syndrome.” I’m not sure why I had this expectation.
The letter I received was more like a discussion containing a lot of personal information. I wrote back to the counselor asking for a shorter version of the diagnosis with less personal information that would be suitable to show a potential employer or anyone else I wished to divulge to.
The doctor obliged and wrote me a short version with the personal information removed, although it did still mention the co-diagnosis of anxiety and depression. I thought, “This will not do. I don’t want an employer to read that.” But then I thought about it more and realized, who am I going to show anyway?
It’s sort of funny that I’d formed an idea I would need to walk in to some situations with documents proving my Asperger’s Syndrome, not unlike carrying a visa or a passport! However, employers aren’t going to ask me to prove my Asperger’s at an interview. What do I need a certificate for? To hang on my wall? Actually, it could be fun to have an Asperger’s certificate to hang and be proud of. But I don’t need one for any practical purpose.
And then that was it. My formal diagnosis was done. It doesn’t change anything for me, but I’m glad to have had it done. It gives me validation and a kind of clarity that comes with really knowing myself, and I was glad to have the opportunity to discuss my Asperger’s with a professional and learn the answers to many puzzles that had been plaguing me. I’m glad to know that it’s right for me to be the way that I am and that I don’t have to justify myself to anyone or pretend to be anything that I’m not.
The more I let the real me come out, the more I grow to like who I am, and I’m finding that others like my charms and quirkiness too. I’m proud of my talents, intellectual abilities, and uniqueness, and I wouldn’t want to be anything other than myself. And now that I know the label that comes with that and that there are others like me, I want to wear it with pride and strive to show the rest of the world what a great lot we Aspies are. We are the best! People just need to look past the stereotypes and see it!