Wednesday, March 18, 2009

To Tell or Not to Tell?

Through all this, we often come to the question of whether of not we should tell people about MJ's Asperger's. Now I'm not going to be one of those moms that broadcast his autism to anyone we encounter on the streets. (Seriously, I have seen a lot of moms come up to me and just announce "My son has autism. That's why he is this way." or "Please excuse him, he has autism!" when there really was no reason to announce it. I was just a stranger and their kid wasn't doing anything weird or wrong.) But, when do I tell others about MJ, or should I tell them at all?

What really are the benefits of telling other people about MJ's Asperger's, or what are the downfalls from telling? I worry about this alot. It seems to me like it is important to tell adults or teachers who will be working with him. I usually just have a small chat with his church leaders or teachers, or new cub scout leaders before he starts in a new group just so they will have a heads up in case there are any problems. I always meet one on one with school teachers and make it very clear that I keep a close eye on happenings at school. Several of my friends know about MJ, and family know, and they are supportive and mostly accepting.

I just worry sometimes if it will hurt things if word gets spread across town that MJ has Asperger's. I don't want him to turn into some freak child that people whisper about behind their back. Like having Asperger's is like "having cooties". Sometimes I worry about those parents I've told about MJ, and if later in life they are going to discourage their daughters from dating him because they wouldn't want them to marry an Aspie. Is this dumb? Or I worry that all these people won't see him for who he is, but only see the label on him his whole life. I want people to know him and love him for him, and not for some pity thing or be stand-offish because they don't want to be around someone who is different.

Before we knew anything, people didn't pity him or anything. We did get a few comments from family and friends about his awkwardness and things he did, but no one really thought it was anything major. He was just a little odd.

When we found out all these things and about Asperger's, we let a few people in on it, and now it seems like people approach me asking, "oh, this is because of his autism, isn't it?" Or I'll hear comments like "he is such a special child". And no one really wants their child to be referred to as the "special" child, when you know what they are really saying. They don't mean special, but they mean disabled in some way.

It bothers me. When we found out about his Asperger's, I thought it was almost liberating because it could explain things better. It was the answer to all our why questions. But at the same time, the label came with all sorts of looks and judgments from others.

I mean, so what if he has Asperger's. So what. Sure, it helps us to know how we can direct things a little better and how his mind works a little differently, but it isn't a bad thing. I guess I'm mostly just worried about his future. I don't want people to avoid him or girls to not want to date him because he is an Aspie.

OK, so I married an Aspie. So. If I would have known my husband had Asperger's before we got married, would I have still married him? Yes. I guess I am worried for stupid reasons. If a girl really loves my son, then I'm sure having Asperger's is not going to matter. Any girl, and anyone could either accept him or not accept him for any reason. Maybe it is just the worry that people won't even take the chance in the first place to get to know him if they only see him holding the "I have autism" sign in their head.

I think it is just that you want so much for your children. You want them to have a bright future and to be happy, and anything that comes in the way makes you worry.

My husband didn't have the label. Did it help or hurt that he was rather just "odd", or would it have been better to have been "Aspie"? He believes his life would have been better growing up if his parents and teachers would have known the difference. But today? He has accepted his Asperger's, he even proudly tells it to others, although he isn't broadcasting it to just anybody. Maybe that's just it. We'll have to continue to pick and choose who and how we tell.

Anyone out there have any input on this?

Monday, March 9, 2009

Realization of Asperger's---Too Many Years Too Late?

All this time while we have been doing the evaluations and testing for MJ, the doctors and psychologists kept on asking questions about my husband. They kept looking at each other with these knowing glances like they knew a hidden secret or they shared some inside joke. It slowly came out---MJ had all these issues with AS, but they were all directly similar to the way my husband acted and thought. And true, as I read all these pamplets and books about Asperger's, maybe the traits didn't fit MJ so much, but they sure fit my husband. It had to be true---my husband was the one with Asperger's and MJ had somewhat genetically inherited it too.

As the doctors said, "the apple doesn't fall far from the tree". This was their confirmation to me that my husband probably had it too.

Now, I had been telling this to him for some time after the initial testings and diagnosis for MJ, but he still didn't really believe it or accept any of it. I think he felt it was somewhat of a disease or something and he didn't want anything to be wrong with him.

Slowly I got him to read some different articles and I introduced him to some other Asperger blogs to show him how much these other Aspies talked and acted like him, and slowly I think he began to see it.

One day he came across one of the blogs on my blogroll written by an Aspie guy who has a lot of great insight. On it he had a link to an online Asperger/NT kind of rating thing. One of them was and another one was at . He went ahead and took a couple of these online quizes and was surprised when he scored right into the Aspie range. Still skeptical, he asked that I take them. When I came out so dramatically opposite to his Aspie scores, I think he finally began to accept he was a part of it.

So, yeah, he has never been officially diagnosed, but the doctors and psychologists treating MJ seem to agree, and all these tests point to it, and most of the things we read seem to match right up, what else could it be?

Actually it has been almost a relief to my husband following his recent acceptance. His whole life growing up he felt stupid or like something was wrong with him. It's different if you know you have Asperger's growing up. Then you know there is a reason for your differences or odd behavior. But if you grow up being odd and weird and don't know there is a reason, then you grow up feeling stupid and wrong just because it is your own fault and you just can't do anything right. This is how my husband felt. His parents ridiculed him daily and always let him feel he wasn't good enough. His siblings laughed and made fun of him behind his back. What a terrible way to grow up. If only they had this realization back then, I think his life would have been happier and he would have felt like a better person.

As far as being married to an Aspie, well, I'll tell you it helped our relationship out in huge amounts. When I was first married, the first years were so hard. I couldn't understand how he couldn't see the need to do all these important things. How could he not notice this or that? How could he not think of anything spontaneous on his own? Why did he absolutely hate surprises? Why couldn't he get anything done? Why couldn't he remember things? Why couldn't he talk to people? Why was he so afraid to call people on the phone or ask people for things? Why did he get so upset about little things that didn't seem to be a big deal for me?

We would have weekly fights over all of this. Why couldn't he change? Why was he so obsessed with the computer and how could he lose track of so much time so easily?! Was our marriage doomed? Was I going to have to be more of a mother that a wife?

When we began learning about Asperger's it all began to make sense. I began learning how to redirect my sentences or be more direct in the way I talked. I learned how he didn't know what I was saying when I made little comments about, gee how I wish this would be done, or I made huge sighing noises or faces. If I wanted his help, I needed to be direct and ask for it. If we were going to do something or go somewhere different, I needed to tell him ahead of time. If I was going to paint something different or rearrange the furniture, I needed to give him a heads up.

I do love my husband, and I do not in any way think there is anything wrong with him. I realize and accept his Aspieness and am thankful for the realization to give us a better understanding of one another. I am greatful for his insight when it comes to communicating with my son.

If anything, there are so many benefits to being an Aspie. I know different Aspies have different traits. I don't know about those that seem to lack human affection or sensitivity. If anything, my boys show so much more sensitivity and care for others. They might not know the best way to communicate and they might seem awkward in any conversation, but they truly love and care for others. They just don't always know how to do it properly. Maybe they don't care how they dress or understand why it matters to match clothes, but they are so smart, and really open my eyes to all their insights. I will never be upset that I married an Aspie, or that any of my children inherit it, but I will cherish them and every part of them that makes them the unique person they are.