asperger's

I want to take a moment to talk about where my kid comes from: me. Not to sound self-important, but let's face it, our kids do contain our DNA. While I've been watching my son grow and learn, it has only become increasingly obvious to me that he will one day be diagnosed as somewhere on the spectrum. In my own personal opinion, having a lifetime of experience with a brain that works in a similar way, I think he will most definitely be diagnosed as having Asperger's. Well, as I've mentioned before, that title for the diagnosis is going away, (in just a little over a month) but what you call it doesn't matter. My son's mind works in a special way that is different from what society considers "normal".

So does mine.

I found this incredible blog post that talks about a man who wasn't diagnosed until he was an adult. It briefly describes the effect his unique mind has on his marriage, as well as what it was like to lack any sort of explanation for how his brain works differently than a lot of other people. While I was diagnosed 9 years younger than he was, (21 instead of 30) I can still relate. Who I am, this new realization as to what makes me tick the way I do; everything about this diagnosis has had an extreme effect on my relationship with my husband.

A lot of the time when someone learns that I have Asperger's, they seem to think I'm making things up to get attention, because I've somehow fooled them into thinking that I'm simply the quirky/odd person they've had to interact with. Within the Asperger's community, I am considered very "high functioning". In my opinion, my son will be seen in the same light once he is old enough for anyone to pay attention. Sadly, those who are in a position to help my son in terms of behavioral therapy right now are only interested in one or two half hour sessions upon meeting him, and when someone is on the higher end of the spectrum, that isn't always enough to show what is going on. In addition, the therapist I first took my son to paid very little attention to him after 10 minutes and proceeded to tell me that I was just projecting myself onto my son.

The people in my family who deal with special needs children in their professions all see how his mind is different, though. And over the course of his first year at preschool, his teachers have seen and experienced everything I have dealt with at home. Unfortunately, there really is nothing anyone is willing to do between the ages of 3 and 5. Somehow there seems to be a gap in services between Early Intervention programs and kindergarten if the challenges at hand aren't related to speech, physical, or cognitive functions. He is physically perfect and very intelligent... we don't need help with any of those things. However, all of it raises the issue of Autism Awareness. People just don't seem to get it; just how wide-ranged the spectrum is. At least with children, everyone seems to be more patient. Though I often get comments about my child's behavior in public and the way he is probably being parented at home, they don't know him and they don't know me. I am not a perfect mom, but I am darn well a perfect fit for my son. Meanwhile, as an adult, everyone just wants me to change.

I do not need to be changed. To grow as a human being, as an individual, sure: I can learn and advance. But there is nothing about my essential makeup, nothing about how I was born that is wrong. I have spent my whole life caught in a tug-of-war trying to decide whether I should care about what others think or even how I feel about the picture that has been painted that depicts this erratic and bizarre person. Do I like that unique creation? Am I bothered by the inevitable stigma created by the label that eventually comes into play in order to explain why they can’t quite figure me out? I’ve been blamed for hiding behind my diagnosis. “Don’t let it define you.” It doesn’t define me; it helps you understand me. I’m no different now than I have ever been. In fact, I feel better than ever now that others can at least have a general direction to look, some idea as to what to expect and an explanation for my past actions. Heck, it is nice to know that maybe, if my family were to look back on a lot of my childhood, they could see that a lot of the instances when I claimed an inability to control something for which I was blamed and reprimanded, I was telling the truth. And all of those moments when each and every one of them cocked their head to the side and questioned some odd thing I did as if I was an alien from another planet? What I was doing made more sense than their reaction warranted, they simply failed to take the time to ask and fully understand my actions. I do not need to be changed. I am simply an extraordinary human being, and one that is rarely understood for my full brilliance. 

For as long as I can remember, I have had an impossibly hard time expressing my thoughts. Even today, I find that there are not enough words in the English language for me to communicate what goes on inside of my head. I do not have the capability, even with those words available, to accurately portray my contemplations and general view of the world. The longer I live, the more I am convinced that I just think more than the average person. Even in stating that, I am sure I am not conveying my message properly. My brain simply goes a million miles a minute. Constantly. That rushing feeling that people say they have when trying to go to bed that they just can’t seem to shut off their mind in order to fall asleep? I am like that all day long, every day. I think that is why I do not like to spend a lot of time by myself. When I am alone, it is even more intense. If it were in an audible narration format, imagine an auctioneer’s voice selling off items and multiply it at least ten times. When I am around people that I know extremely well and am comfortable with, it slows and dims a little, helping me relax. To express even a fraction of that to someone else takes immense focus and has always been difficult. I constantly feel disjointed and wonder if anything I am saying (and even more often wonder in my writing, though I am relieved to be able to re-read everything before submitting it to the eyes of any peers) makes sense. Hopefully over the years I have become more comprehensible, though according to my mother I have always been eloquent on some level or another. I know I have been accused of being afraid to be left inside of my own head as far as spending too much time alone and without other people, but I wouldn’t say that is the problem. I’m not afraid of what is in there; it is just too tiring when I’m not asleep. I spend a lot of my alone time reading or watching movies or television because I need something to slow me down. Even cleaning the house or running errands leaves far too much time to think. Writing, which I am hoping to spend more time doing, (and attempting to delve back into) also provides some reprieve.

I am not uncomfortable with silence in the way that the normal person might be. This is also something I have been accused of countless times over the years. I am uncomfortable not understanding what is going on in a social setting, and since that is quantifiably 100% of the time, silence simply baffles me. When silence descends, I have even more time to spin in circles in my mind wondering what on earth is going on. Without someone opening their mouth to give me any clues as to what I am supposed to be doing, what people are thinking, or in what way they are expecting/suggesting I react, I am completely lost. If those things weren’t complicated enough for me (someone who has absolutely zero ability to read physical and vocal/tonal cues) to begin with, silence that follows conversation -- especially when it clipped or cut off -- really has me whirling. I’m not uncomfortable left to my own thoughts… I’m uncomfortable left trying to figure out everyone else’s.    

Very literal thinking and the expectation of others to think of things from the perspective of fact and logic is something else that has gotten me in a lot of trouble over the years. This is another part of me that is not changeable, nor is it something I would change about myself if I could. I do however strive daily to learn how to adjust if someone doesn’t see things from the same viewpoint as myself and make sure that they understand that I wasn’t in any way trying to offend them if offense was taken. Sadly I must say, in this world there are an astoundingly small percentage of people who are willing to understand and accept individuals who take things literally. As I’ve grown up, I’ve learned not to hold others to my same logic to the extent that I did when I was a child. When I was young, I had a birthday party (January) on a day where it snowed so hard that school was let out early. Most of the parents called to say that their children wouldn’t be coming for my sleepover, which I understood because the roads were bad at 1pm. However, when 6pm came, the time at which they should have arrived, the roads were pretty much clear, (a miracle by Penn Dot standards) and it was far from logical that they hadn’t changed their minds and called back. After all, they didn’t have any other plans; they had just canceled a few hours previously. The roads were perfectly safe to drive on now! Why wouldn’t they come? I was devastated. Truthfully, as an adult, I would still probably be upset if an equally upsetting situation occurred, but I would get over it. To this day, I remember exactly how mad I was about that birthday party. Reminiscent of a recent post of mine about just such an experience with my son? Yeah. Now as an adult, my adjusted perspective of logic remains somewhat different from what is considered normal among the masses. For example: unless it is on my calendar, it isn’t happening. This is a rule. I work well within these parameters, but outside of them, I am probably going to be quite upset. I will even admit to a secret: I add in things that have happened the day before if they were unplanned, just in case I need to go back at a later date and know what our family had done for some reason or another. (Don’t judge me, it has actually come in handy!) I do still get quite annoyed when someone cancels an appointment. It “ruins my day,” as I tell my husband. However, I have learned to adjust.

Over the years I have been conditioned to shut my mouth. “Don’t be so blunt.” It isn’t that I was intentionally being blunt; I was simply being truthful. The truth hurts. I don't understand why people do not operate the way I do, and I would much rather have someone be straightforward and tell me what they are thinking, truthfully. It has been very entertaining to start raising a child of my own because he hasn’t learned the art of subtle lying. Call it what you will, I still say that not being “blunt” as everyone has so accused, is really just a form of lying. My son, as all other children of his age, has yet to learn that skill. While I will have to work at becoming a better liar in order to sugar-coat or entirely bypass the truth for the rest of my life, I will always feel that it is a true flaw in most societies. No, that shirt doesn’t look good on you, and you look like you’ve gained weight, not lost it. At least my sisters know to expect the truth from me on those points. My hyper-rationality does not distinguish between subtle tact and a lie; they are one in the same. I mentally know the difference, but detest both equally. It is against everything in me to even smile when I'm not happy. Lies. All lies. And when you teach a child from birth that lies are wrong, how can anyone really blame me for thinking this way?

Like I said before; my poor husband. I feel bad that he has ended up stuck with me. In ways, while I like to tell myself that he knew what he was getting into after having dated me for two years, I think he is still learning the stretching depths of my intrinsic mind every day. While it is always good to learn one new thing about your spouse daily, something that is hard to do as the years go on, I feel like he is still struggling to even dip his toes in the water. Anyone married to me would. Maybe it is simply because I more fully understand the complexity of my own mind that I am worried about his journey into understanding it in the slightest? He knows it better than anyone else in my life does, but I somehow feel guilty for subjecting him to it at all. 

How my "different" mind will effect my son with an equally unique brain is yet to be determined. So far it has been a huge advantage when it comes to raising a child with similar struggles and points of brilliance. I think in that aspect, it always will be. In times when my husband and everyone else struggle to understand what is going on inside the kid's head, I have a much better chance of understanding and being able to help explain. On the other hand, as he grows and matures he will develop coping skills to get by in this strange world, and our relationship will change. I guess all kids grow less dependent on their parents, no matter what the reason or area of dependency. I'm just curious and rather anxious to see what that will look like for us.