Is Asperger's Hereditary? Another Son with Asperger's?

This blog has always had the little bit at the top that says, "Our experiences with 2 Aspies, maybe 3....", as our son MJ has Asperger's, my husband, and then we have always suspected our youngest daughter Rose to have it also.  Well, today, we might be adding another number to that tally.  We think our second son, Thomas, probably has Asperger's as well.

I suppose this is not just an all of the sudden realization that Thomas could have Asperger's.  All the signs have been there, yet we have chose to ignore them.  In some ways, his symptoms have been so extreme that they are almost shouting at us----"Hello!!!!  This is Asperger's!!!"  But why haven't we paid attention?

Back when our oldest son, MJ, was being diagnosed, the team of doctors mentioned to us that we should keep our eye on his younger brother, as he seemed to show some similarities, but I thought they were talking more about how he was really smart and reading at a young age like his older brother did.  

Thomas is our second son who is now 9 years old.  He's had his little eccentricities, but not in the same way as his older brother.  While he is very literal like his brother, I thought it was just from copying what his brother said.  He seems to have a lot of opposition when it comes to changing events or when something doesn't go the  way he planned, but I have always taken his whining and complaining as just that---stubbornness.  

Then there is the huge sensory issue.  Thomas cannot handle extreme sounds like high pitched noises, children screaming, a lot of commotion in a room, or he has always held his ears in pain whenever I vacuum.  As far as textures go, he freaks out by the feel of half of his clothes always complaining that they are not soft enough or scratchy.  No matter how hard I try to find the softest textures of PJ's, at night I always find him practically naked under the one and only fleece blanket that he will accept as he won't let any other blanket touch him.  He sleeps on top of his bedspread. 

As far as social things go, I've never really noticed that Thomas has problems talking to other kids or if he misunderstands social cues.  But then again, he is 9 years old and has never had a play date.  While he believes that "everyone" is his friend, I have never had another kid come over and ask to play or a parent ask to set up a play date.   He isn't invited to birthday parties.  Hmmm....

He has an extreme problem of not being able to look people in the eye.  I think it drives his piano teacher insane that he will never look at her when she is talking to him.  Actually he is usually looking anywhere but at the person talking to him.  He'll play the piano while intensely focusing on an object across the room.  How he does that and still plays so well is amazing to me at times, but it also seems not so good when at piano lessons as it seems he is not paying attention.  Well, that and how he seems to have this a little too long delay in his responses or you have to direct him to answer the teacher when she asks him a question or says "hi, how are you?" 

OK, so hello again!!!!  Look at all these things.....aren't they all just screaming "Asperger's!!!!"??? 

Well, no, we still just shrug it off.  

Actually, we were more concerned with a different problem affecting Thomas.  A few years ago we started to notice all these noises and facial tics with Thomas.  It began with sniffing, then gulping, swallowing, making clicky throat noises, then scrunching up his face and nose, making fish faces and blinking his eyes.  This seemed more out of whack for us ( I suppose we were used to all the other Asperger like traits) so we began taking him to doctors to figure things out.  There, it came to be that Thomas had Tourette Syndrome.  Tourette's is a condition where people tic and they can't control it.  Well, they may be able to suppress it, but it usually ends up exploding out after a while.  Now, many think it is the "swearing" disorder, but that is actually a form of Tourette's that is not always involved.  

So there----Thomas just has Tourette's.  Or so we thought.....

As we took him to different doctors, the thoughts of ADHD or hyperactivity disorders came around.  Well, yes, Thomas was the most hyper of all my children, and I swear I could not get him to focus on anything for longer than a minute!  It drove me absolutely insane!!!  He was always distracted by anything and everything!  While they evaluated him for that, they didn't seem to think he could be able to play the piano as well as he could if he had ADD or ADHD.  That, and our evaluations didn't match up with one overprotective teacher who scored him at all zero's.  We did learn that with Tourette's there is a lot of hyperactivity, so we just left it at that.

OK, back to the point of this post---the possibility of Asperger's.  Is it hereditary?  I believe it is, along with many other doctors.  But how much is hereditary and how much is just learned behavior?  I mean, younger brother has older brother and dad to look up to and they both have Asperger's.  How do I know what is him and what is just copied?  

Well, if all these characteristics weren't enough, a big one we have never connected is Thomas's massive obsessions.  I just thought he was an interesting kid who only wanted to play the piano for hours as a 4 year old.  Or, sure, my kid has obsessed about maps and atlases since he was 3 years old and spends hours just looking at maps, following roads, or making up games with atlases.  Sure, he likes to take the phone book into the car with us so he can go through every street and every map.  So.  Or, little teeny notebooks and papers.  He has to have every single thing or book that is mini.  It doesn't matter if it is some mini sized book about dirt.  It's mini, it's called "pocket" whatever, and he has to have it.  

I recently looked up an article that listed the characteristics of Asperger's in kids at http://autism.lovetoknow.com/Aspergers_Checklist, and although he doesn't seem to show the social clueless signs of Asperger's (well, maybe, I suppose he does think everyone is his best friend, but then nobody plays with him), all the other signs are there staring at me in the face.  That, and I was interested to see one of the symptoms they listed was "may have facial tics".  Hmmm...  

So now what?  Where do we go from here?  Do I need to have him evaluated?  Will doctors think I am crazy?  Do we just leave it be?  Well, this can be dilemma for another post.  But until then, I think I just might change my little description up there to "maybe 3.....maybe 4....."

How to Tell Your Kid About Their Asperger's

OK, so as you have read in my last few posts, we have kind of been having this struggle trying to talk to our son about Asperger's Syndrome.

Yes, I had all these ideas at first about how his dad should go talk to him because he also has Asperger's and it would make more sense coming from him. But then what I had in mind didn't really manifest as my husband talked about how hard life was going to be and how miserable junior high was going to be, and basically I think he just depressed the boy.

Then of course I learned a little bit to think why does it really matter that we tell him he has Asperger's. Rather, just help him to figure out how to overcome any struggles related to it.

Well, anyway, my emotions continued to be mixed, and I still felt like I was somehow doing some sort of injustice by not fully explaining his condition to him.

We watch the show on NBC called Parenthood. If any of you have not seen this, it's partially about a family who has a son with Asperger's. The show has been interesting. I think they do a pretty decent job in showing the characteristics of Asperger's, but then I often disagree with the way they let the son sort of rule the house on the show. So, mixed feelings there, but on the show, the parents kept the boys Asperger's like a big secret and they didn't want their son to know. One day he overheard and found out he had this thing called Asperger's and wanted to know what it was. Anyway, on the show, the doctor and the parents had this idea of how to explain Asperger's in a more positive way by describing not just the challenges, but what strengths there are associated with Asperger's Syndrome.

Well, I thought this was a great idea, so we all sat down at the table and I started to talk to MJ. I said, "Hey, did you know what you can do that maybe others can't do so well?"

Of course, this is where things turned sour. For every strength that I began to list, my husband (who obviously must still think there are no benefits to having Asperger's) would put out a "but" or "well, not exactly..." or other kind of comment that was tearing my pro list apart.

"Did you know that you and Daddy both have really good memories and can remember tons of details about things?" And then my husband says, "Well, only about stuff that other people don't really care about."

And then I said, "Did you know that you guys are really smart and have this whole database of knowledge and that you can remember all kinds of facts and figures better than most people?"
And then of course my husband chimes in, "but it's usually only about things that no one else is interested in...."

OH! I just wanted to smack him! And yes, I gave him "the look" a couple of times, but of course a man with Asperger's is not going to understand "the look", so that did no good.

But I tried to go on with several pros about having Asperger's as my husband was all negative, but hopefully I got some positives across. Then with the positives, I slowly began describing some of the challenges about having Asperger's.

I talked about how it was a little more difficult to know when other people were finished with a conversation or how to understand what they were feeling. We talked about how they had to work a little harder to look and respond to people, or how they didn't always understand certain jokes or "looks" that people give. We talked about how they didn't always understand the reasons why they had to behave certain ways or not talk about certain things in public, or why their clothes had to match or other things.

Overall, I think it went over very well. I'm sorry that my husband must have had such a difficult childhood to be so negative about any benefits of having Asperger's, but we really want MJ to have a different experience with the whole thing. We don't want him to grow up thinking these things are wrong with him, rather that he has strengths and weaknesses just like anybody else, and everyone has to overcome their weaknesses in different ways.