Tag Archives: Asperger’s syndrome

Autistics Speaking Day 2013 – Being Myself

For perhaps the first time in over forty years, I am being myself. I am taking a break. Pausing for a few hours, and just being me. Setting aside the exhausting work of trying to be the person that my allistic acquaintances expect me to be.

You see, I’m autistic.

I’m successful in my work, I’m the father of two wonderful children, and I am autistic.

I’ve spent most of my life trying to fit in, but until recently, I didn’t really understand why I’m
different. I’ve struggled to understand what people mean when they say things that don’t make sense to me, and I’ve agonized about trivial misunderstandings for days. I’ve gone to unimaginable extremes to avoid conflict, because in conflict I fear that my differentness will become a weapon to be used against me. I’ve thought and thought about things that many people would probably consider trivial, yet thought nothing about things that they seem to worry about a great deal.

And this past summer, I finally learned why.

Because I am autistic. My mind works differently.

In order to succeed, I’ve spent most of my life subconsciously compensating for the ways that my mind works differently. I’ve tried to behave like the many non-autistic people with whom I must interact. Ignoring the odd looks and blank stares at my failed jokes. Counting everything I see, absorbing patterns, getting lost in details. Struggling with words and feelings, experiencing powerful emotions but not knowing how to describe them or react the way allistic people do.

And yet, most people I know would not recognize me as an autistic person.

Eccentric, weird, aloof, or perhaps even reclusive. But not autistic.

Because I have unknowingly worked very hard to hide behind a caricature of myself. An allistic version of me. A facade. A fake.

The real me, the autistic me, has been here all along. And it feels good to be able to drop the charade, to just be myself.

Until I have to leave the house again, when I will put on my mask, slip back into character, and try to blend in with the alien expectations of this strange world that is my home.

For the time being, I am myself. I am relaxed, and comfortable, and enjoying some quiet time with my spouse. And I am me, not the character I often play, or the person that society expects me to be, but my happy, eccentric, autistic self. And that feels good.

Happy Autistics Speaking Day!

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Unexpected Consequences of (Irrational) Anxiety

Before my diagnosis of autism, my wife sometimes told me that she felt I was trying to be “too controlling”… that she thought I needed to be in control of things at home. While her (unsurprising) reaction was frustration, I think that my reaction usually caught her off-guard.

We’ve probably all known people who actually ARE very controlling. Controlling people may limit any opportunities their spouse or partner has to socialize, or may not allow their partner to make any decisions. They may restrict spending, or set unreasonable expectations. In some cases, exercising control can lead to other forms of abuse, emotional or physical.

So when my wife “accused” me of being controlling, confusion and anger were NOT the reactions she expected from me. I was confused because I was not, consciously, TRYING to be controlling. Far from it, yet that was how my behavior was perceived by her allistic mind. And when I get confused, that often looks a lot like anger from the outside. What was I doing that she thought meant I was trying to control her?

I was trying to know her schedule. I was encouraging her to have a routine. I was asking her not to go. Hmmm… those do sound a bit controlling, don’t they? At first blush, they certainly do, even to my Aspie mind! But dig a little deeper, and maybe not so much…

Knowing her schedule was important to me, because having that information would help me not make false assumptions. It would mean that I wouldn’t worry about her unnecessarily. I wouldn’t wonder where she was at any given time. I wouldn’t hear about a car crash and assume that she’d been involved. Knowing her schedule would help me know that she was safe. And that’s important, because I care for her very, very much.

I wanted her to have a routine, because I was more comfortable with routine, and I assumed that everybody felt the same way I did. I wanted her to be comfortable, to be able to relax, and for me, that works best if I have a routine.

And yes, there were times that I asked her not to go. Not to go to a party, or out with her friends. I asked her not to go, because I wanted to be with her. I didn’t consider that my request would mean she might not get a chance to enjoy herself, I just wanted us to be together, and since I absolutely DREAD going to noisy places that are full of people I don’t know who might want to, god forbid, talk to me, I asked her not to go.

Since my diagnosis, I’ve learned that in spite of the unique ways that I experience emotion, I DO care very deeply for my wife, and I also know that she loves me very much. Yet I am still challenged to believe that she will stay with me, that she wants to stay with me, in part because I don’t have much self-confidence – particularly when it comes to relationships. This is where the “irrational” part of my anxiety comes in. Our relationship has lasted more than a quarter of a century. We’ve been married for more than HALF of my entire life. There has never been any realistic indication that she might leave me, nor any logical reason for her to want to (in spite of our few communication challenges). Yet I still worry that she won’t come home from a women’s group meeting, or that she’ll pack up the kids and move back to her parents’ home while I’m at work one day. I’ve learned that this is a part of Asperger’s syndrome that I’d never heard of before my diagnosis – a situational distortion that I think is best described as “catastrophizing” – the act of taking “assuming the worst” to a whole new level.

Why did my anxiety come across as a need for control? Because in our society, we often equate information, particularly personal information, with control, and what I was seeking was information. More information than most people want or need about their significant other. Detailed information. Specifics. Because without that information, my mind would wander down some dark alley, and create some fantastical myth about aliens abducting her, or a movie star sweeping her off her feet. With not enough information to conclusively (to my Aspie mind) refute the myth, I would add details to it, making it progressively more sinister, and more painful, and – unfortunately – more real to me.

I’ve been working on a practice from the Social Thinking model called STOPP, whereby I consciously evaluate the things that trigger my mind to begin weaving one of these myths, and then use logic to refute that trigger before I let the story even build up enough steam to leave the station. When I’m successful, I can often look back (with humor) at how I might’ve previously ended up in a meltdown or shutdown because of the lack of information from a misunderstanding or miscommunication. I haven’t been successful all the time, but certainly successful with enough frequency that I will continue working with this technique.

In addition to my work around catastrophizing, my wife has made some important and helpful changes since my diagnosis. Now that she understands that my need for information is not about control, but rather is my quirky Aspie way of caring about her, she has gotten much better about keeping her calendar accurate and up-to-date. Even though she is spontaneous at heart, she has been willing to establish some routines. And most importantly to me, when I’ve asked her not to go, we’ve been able to talk about why and often find a compromise that works for both of us.

I still sometimes struggle with anxiety, and sometimes I still worry about my wife abandoning me. I probably always will, because that’s just how my mind works. But now that I know more about how my mind works, I won’t be as likely to let my anxiety and fear of abandonment lead me down the spiral into a meltdown or shutdown.

AspieKent

First Thoughts – Writing as Therapy

I have autism. I am a man in my mid forties, I have a wonderful wife and two amazing children, and I have autism. I have a good job, am well-respected in my field, and I have autism. From time to time, I’m finding that I still have to remind myself of that. I have been different all my life, but I didn’t really know HOW different until a few short months ago. Over the past few years, we had gotten to a less-than-comfortable place in our marriage, with arguments and anger becoming more common. Over the past summer, as one step toward getting the help that was apparent we needed, my wife shared that she thought I might have Asperger’s syndrome.

Asperger’s syndrome? What was that? As someone who had prided myself on knowing everything, I had to admit that I didn’t know anything at all about Asperger’s syndrome. I also didn’t know very much about autism. Fortunately for me, and for our family, my reaction to the suggestion that I might have Asperger’s syndrome was curiosity rather than anger or frustration.

In the past few months, I have learned a lot about Asperger’s syndrome, autism, and more importantly, about myself. My therapist has told me that the emotional roller-coaster that I’m riding is in some ways a form of grieving, and that I will go through the various stages of grieving as if someone close to me had died. He added, almost as an afterthought, that I probably wouldn’t go through those stages of grief in linear order, but rather would bounce around through them, coming back to some, maybe never experiencing others, but eventually coming to terms with a different understanding of myself.

In addition to the help and support of talented local professionals, including my “Asperger’s counselor” and our “couples counselor,” I must give most of the credit for my growing self-awareness and knowledge about autism and Asperger’s syndrome to the talented and diverse autistic blogging community. I have read literally hundreds of posts from a dozen or more bloggers. While I have only posted comments on a few (at least so far!), I’ve found myself saying again and again, “wow, other people have these crazy experiences like me?” I’ve made an accordion folder full of printouts of particularly poignant posts, with sections highlighted and the margins full of scribbled notes.

In the past month, my wife and I have grown closer than we’ve probably ever been. In fact, I can honestly say that I feel closer to my wife emotionally now than I’ve ever felt to any other human being. While I can’t say that our journey, the past twenty years or the past twenty weeks, has been an easy one, I do know that her love is what has motivated me through low points. She has given me a wonderful reason to focus on myself, to learn about my different abilities and challenges, and to understand why I can be so difficult to get along with at times.

So why am I writing this now? I’ve always been better at expressing my thoughts in writing as opposed to speaking, drawing, painting, or any other form of communication. My mind is always full of thoughts, a few of which I believe might be interesting to others. Many of my thoughts are not completely formed or well organized, and it sometimes takes me a number of drafts and re-writes to capture those thoughts effectively in writing. But the process of writing helps me focus and clarify my thoughts, and also gives me a less-threatening way to share them with my wife and others. It is my hope that some of my thoughts might inspire others to learn more about themselves, or to identify strategies that help them with challenges they face. It is also my hope that others will offer their own thoughts and observations, because I still have much to learn.

I expect that some posts (like this one, for example) will be exclusively mine, while other posts will be from my wife and some will be joint efforts. We will try to be clear in who has written what, when possible. We have chosen to remain anonymous for the time being, as I have a somewhat public job and have only shared my diagnosis with a few of my closest colleagues.

We welcome any comments or questions, and we thank you for stopping by.

AspieKent (the autistic half of “Aspie and Allie”)