Hey, Adam here. So, I have Aspergers Syndrome (AS). Just thought I’d get that out there. I was diagnosed last spring, ten months after Spencer was diagnosed with AS. We had not told any people about my diagnosis because it never really felt relevant. Since then, I’ve read a bunch about adults with AS. Research shows that the presence of autism in older generations is roughly equal to kids being born now. That means that the “autism epidemic” you often hear reported is nothing new. We are just better able to recognize it now. It occurred to me a couple days ago that I likely have at least one or two friends with AS/autism and don’t even know it. It has benefited me greatly to understand my place on the spectrum, and I’d like to shine light on it so that if any of those who know me are on the spectrum, some of this might resonate with them. Hence, this post.
For a couple years prior to my diagnosis, I had been trying to find an answer to why I had been having difficulties coping with life in general ever since Spencer had been born. I searched and searched all I could trying to figure out why I would have mental breakdowns just because there were dishes to do. Why mentally scheduling a few tasks for a Saturday literally (and I mean that literally) felt as impossible as calculating higher-order derivatives without a pencil and paper. Why more nights than not, I dreaded spending time with my family after work. Why I got moody and grumpy every weekend before church or any social event and felt immense relief whenever such events were over.
Eventually, thanks to Spencer’s diagnosis, I was able to match up nearly every single one of my struggles with those typical of someone on the high-functioning end of the autism spectrum. I’d like to go through three specific aspects of how AS has negatively affected my marriage/family life and how learning about AS has shifted it in a positive direction.
Wikipedia states that “Emotional intelligence (EI) can be defined as the ability to monitor one’s own and other people’s emotions, to discriminate between different emotions and label them appropriately, and to use emotional information to guide thinking and behavior.” Did you know that there are actual psychological evaluations to assess emotional intelligence? I’ve taken some of them. I didn’t do very well, and it turns out I’m not alone. Many (most) people on the autism spectrum have a hard time with it. For me, specifically, I can label emotions just as well as anyone else in a removed, third-party setting. Unfortunately, in a live setting, I almost completely lack the ability to monitor, discriminate between and label emotions going on in others and especially in myself.
I’m sure you can guess as to all sorts of marital hazards that can arise from this. They have taken a few forms for us, but I’d like to share one type. When disagreements have come up for us, emotions tend to accompany them. Well, at least they tend to come from Jessica. I definitely feel them, but I have incredible difficulty expressing or even understanding what they are. On top of that, the emotions Jessica is showing are hitting the impenetrable wall that is my brain. It has led to some difficulties in communication. Pre-AS diagnosis, this would often end with her in tears and me wondering what train of bricks just hit me. I would literally have no clue how to interpret all her emotions as anything more than just “sad” or “mad”. They were like a foreign language to me.
One other problem would always accompany such conversations: I would “shut down” in the middle of them. It was never a conscious decision. My emotional center, and also most of my mental faculties, would close for business. I would literally be unable to answer more than yes or no questions. Post-AS diagnosis I have learned that this is a common thing for those on the spectrum. Another term is “overload”. I’ve come to understand that emotions’ (especially negative) affect me in a way very similar to very loud noises. It is much like someone is yelling. And the more the emotion is directed at me, the more deafening. The other night I saw someone crying (happily) and hugging someone else that I knew, and I couldn’t look away. It felt like they were making so much noise and was very, very distracting when it actuality it was very normal for the environment they were in.
Learning about AS has helped us understand that I can participate productively in disagreements or conversations-in-conflict as long as we take the right approach. Jessica is allowed to be emotional with me, even negatively, but I might just save my contribution to that conversation until after everything is cooled down. I am not off the hook, emotionally. I have learned that I need to share how I’m feeling with her, with the understanding that it might not be at “normal” times.
Jessica’s two cents: Once we started to understand how to better communicate with each other and our reactions to one another, we’ve been better able to avoid any overly emotional crying upset moments on either of our parts. It took some time and a rather steep learning curve, but it has really helped.
“Executive functioning” can be simply described as being the CEO brain process that manages and runs all the brain processes that get you through your day. You can read a great write-up of how autism and executive functioning interact here.
One of the most common examples of “executive dysfunction” in my life as a parent has been common household chores. If the dishes need to be done (which they MUST be done, a completely different topic), my brain has to plan it out to the nth degree how to accomplish it. I will automatically start virtually loading the dishwasher in my head and plan it all out. If I can’t get them all in, in my head, that brain process shorts out and tries again. This all happens in less than a second and fires off like that over and over and over again.
This was all well and good when we were married without kids and had all the time in the world to dedicate to things like dishes and vacuuming. After having kids, that all went out the window. Now, I have no time to spend all my brain power analyzing optimal dishwasher configurations or vacuuming patterns or order of operations in bathroom cleaning or even the best order in which to do all of these things. Now, I have children who constantly want my attention and don’t allow for those important thoughts (please note sarcasm!). Pre-AS diagnosis, I (very stupidly) kept falling into the same trap of letting my mind constantly work on all the problems all at once while juggling kids. It always led to a breakdown (meltdown) of one form or another.
Now, post-AS diagnosis, I’ve learned about all this and can deliberately set those processes aside. Yes, I will still have to do the dishes, and you can bet that while doing them I’m still going to be figuring optimal placement (though I’ve learned to distract myself with music or TV so that I don’t burn out my brain). I know now that I have to pick one thing, announce it to the whole family, and do that one thing only. Even if that one thing is “play with the kids”, I can mentally set aside all other tasks. It is admittedly still very difficult, but simply knowing how my brain works is quite enabling.
Along with my AS diagnosis, I also received a diagnosis of Social Anxiety Disorder (SA). It does fit quite a bit. The AS part of me has a very hard time understanding social and emotional conventions, and the SA part of me gets very anxious about being conspicuous because of that difficulty. It can be very frustrating some times and a negative loop. It is why I generally prefer to have my social interactions in very small groups. I love game nights at my house because I don’t have to focus on so many people at once. Social language is very much a “noisy” thing to me like emotions. When people exhibit some sort of conspicuous social interaction, it is very distracting to me and hard to ignore. When you get a lot of people doing that all at once, it gets overwhelming very fast.
Pre-AS diagnosis, this would result in me shutting down in many social situations. I would be no fun to Jessica because I would be dead weight and possibly ruin what, for her, is something very enjoyable. I also had difficulties transitioning to home life every evening after a socially draining day at work and would not be a pleasant person to be around. Post-AS diagnosis, social situations aren’t necessarily any easier, but I’ve learned some ways/tricks to resetting my brain such that I can “stay in the game”, if you will. Also, I’ve learned that if I just vocalize the stresses from work to Jessica, she can give me space for a while when I need it which goes a long way towards me giving her the one-on-one time that is important for our relationship.
Jessica’s two cents: Adam is not the only one who is aware in this situation. I’ve been able to identify some of the things that indicate Adam is approaching overwhelmed before he gets to that point and am able to better help him or even tell him to take a moment to go reset before it becomes an issue. We are not perfect at this, but we are getting better and more understanding of each other’s needs.
I don’t mean to paint a bleak picture or anything because, ultimately, I am a very high-functioning person and feel blessed to have always had good supportive friends in my life and to have found so easily my wonderful wife. I know a lot of people on the spectrum suffer so much more, in general. But, if we can improve, any of us, our lives with a little more mental health knowledge about ourselves, it can be incredibly beneficial.
Sorry about the long post, and if you actually made it this far, you deserve a medal. 🙂
7 thoughts on “What Aspergers Means to Us”
We love you, Adam. Of course, Jessica and the boys too.
We have noticed that there have been times that you needed space or quiet or just to be alone. And we are perfectly OK with that. Looking back it’s easier to see the small indicators that are sometimes hard to pickup until you know what’s what. All those aside, you are remarkable. A great Husband and Dad, and despite any personal difficulties you were dealing with, you’ve always been kind and gentle to three of the most important people we love! We’re very glad you’re here with us.
How brave to write this. I’ve seen those moments with you Adam, especially when you would have to deal with all the roommates when you guys were dating. Can you give and resources to look into. I wonder if this is something Jon might be struggling with, I just never thought of it. I think you are both amazing people and if two people can work through this, I know you can.
Sarah, thanks for your comment. For resources, two approaches worked best for me in determining my likelihood of being on the spectrum. First, I took a bunch of tests. Of course you’d have to be careful about what kind of online tests you are taking, and I found http://aspietests.org/ to be a very good resource. It has tests that cover all sorts of traits that are often found in those on the spectrum. It even lets you create an account so you can save your scores. Here are my scores for a couple of the more popular ones:
I believe those three tests were actually administered by my diagnosing doctor as well, so they are pretty legit.
The other thing I did was frequent a few Aspie forums (try http://www.wrongplanet.net/) and read about other people’s experiences. It is a rare occasion that other people’s experiences “ring true” with me, but I would find that happen quite often on those forums. That was a powerful indicator to me of my likelihood of being on the spectrum. Aspies very often report feeling like aliens because they just don’t connect/understand with how other people are experiencing life. Finding that connection/understanding amongst other Aspies was a very welcome relief.
Obviously, Jon would have to do most of the research because it all has to come from him, but maybe that can give you some starting points.
Adam, thanks for writing all this. It’s taken me this long (after reading this the first time) to come to grips with the fact that what you’ve described as “ringing true” also rings true to me. Very difficult to face this, but facing it has been helpful. I’m ready to start taking some of these tests to see just how deep the rabbit hole goes…
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Hey Dan, thanks for the comment. Let me know how you score on those. BTW, we’ve moved our blog back to http://www.jeppys.com
(Adam, we have met a few times but in case you don’t recognize my name, I’m Jessica’s cousin.)
I can’t tell you how much I appreciate you writing this. I saw it when Jessica posted it on Facebook, and I’m so glad I read what you wrote. It has put into words a few things I haven’t been able to sort out for myself. I too have AS and it has been interesting learning about it over the last couple of years from an adult perspective because most people only understand it as a childhood thing.
I haven’t been officially diagnosed and I’ve always wondered if there were tests out there that I could take myself to help me understand some of my own specifics, so I really appreciate the comment where you shared the link to those tests. I took the three tests you mentioned and sent the scores to my husband, and he laughed out loud when he saw my crazy high SQ score because it explained so much why I do certain things. I had him read your post and it sparked some good discussion that I think will really help. So I wanted to say thanks for sharing something so personal because it really is helpful, at least for me but I’m sure for others as well.
Awesome. The post, yes, but especially YOU! I am so glad I get to be your sister and have you as a brother. I don’t know why I didn’t see a link to this on Facebook before. I just had the impression to read family blogs. 🙂 I am so excited to see you, your family, and THE family in June. How is that for you, big reunions? For me, I have anxiety. Not sure why… lots of crazy energy that drains me. But I still love and need it, just as I love and need our family. I have often speculated on how many of us are a little weird on the ocd/add/anxiety scale. What a fun lot we are. Love you!