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.

Why Should It Matter? Telling A Boy About His Asperger's

Here's my cute MJ. 11 years old with Asperger's. In my last post I was all concerned about MJ really understanding what Asperger's is all about. I sent my husband, an Aspie himself, to go down and have a heart to heart with my son and let him know what really was up and how it was going to affect him or not as he got older.

OK, now, I received a few comments, and I'm hoping that I didn't come across the wrong way, because I don't think of Asperger's as being something "wrong" with a person. I have always embraced it's characteristics as unique traits rather and not misfortunes or problems.

Now, true, my idea was that my husband was going to go talk to my son and just kind of say something toward, "You know we have Asperger's, right? Well, let me explain a little more in detail about what it is or why we don't get things all the time...." or maybe some kind of conversation about how life might be challenging for us but we can overcome it.....etc....etc...

But did that happen? Well, no. My husband came up and I asked him what happened. He said he made MJ cry. Oh, no. That's not good. But when I asked what he said, it wasn't the ideas that I had imagined. He said he didn't really mention much about Asperger's and he just talked about how school was really hard for him and he didn't have any friends and it was ugly and how MJ would be going to junior high soon and things were probably going to be hard and teachers probably weren't going to care as much....and how MJ was going to probably struggle to make things work for him.

So....hmmmm.....really, did this conversation do any good for MJ? Hmmm.....I think maybe it just freaked him out a bit more.

But then, really, what was I thinking anyway?

We recently decided to establish a support group for people with Asperger's or those who have friends and/or family members with Asperger's (which I'll go into more detail on in another post). At one of our meetings we met a gal who had been diagnosed with AS at age 19. I brought up this discussion with her saying how I had always explained Asperger's to my son as "You know how your brain is wired a little differently, you know you and dad...." and then how I would explain how he didn't quite get something and what or how he should have acted or responded. And this awesome gal said to me something like, "Why? Why do you need to say that in the first place?" Basically she told me that I didn't need to be starting all these conversations trying to explain why he was acting different than someone else or why he didn't figure something out, but all I needed to be doing was just stating the situation that went wrong, telling him it's not appropriate, and then showing him how to correct the situation, or teaching him how to act next time.

This was very eye opening to me. Really, why do I have this need to have to tell my son or husband that "Gee, I know this is because you think differently or this is because you have Asperger's....." I mean, I guess I just felt this need to make sure my son didn't feel bad or I didn't want him to feel like there was something wrong with him that was his fault. But really, the world just wants people to be normal, and if any other kid of mine did something inappropriate, then I would just stop them, correct them, and teach them. Why should it be different with someone with Asperger's? Yes, they may be different as far as processing things differently, and not picking up on things as easily as another who learns things more intuitively, but why should that matter? They can still learn and try.

So, while I was once concerned about this need for my son to be more knowledgeable about his Asperger's and what to expect as he gets older, really, why? All I really should be doing is teaching him, guiding, him, and doing my best as a mother to prepare him for the future, for growing up, and going out into the real world on his own.

I say so much that Asperger's is not a disability but just a different way of life, but I've got to truly understand that myself and show that better by correcting my words and truly accepting my kids and husband, Aspies or not.

Should You Tell Your Child They Have Asperger's?

The years are going by. MJ just had his 11th birthday.
11.
Next fall he will be starting Junior High School.
He's not a little kid anymore.

So, when should we really sit down and have the "You Have Asperger's" talk? Or should we?

OK, now as MJ was first diagnosed with Asperger's when he was 7 years old, he knew something was up. I'm not sure he knew or understood what that something was, but he knew. We've never necessarily hidden anything from him, although I have often chose to talk with teachers and doctors without him in the room as to not make him feel awkward. But, as he has gotten older, I slowly started making him aware that he was a little bit "different".

It seems weird that I am saying this, but thank goodness my husband has Asperger's so that I can somehow connect someone else to him and he can see that it's not some death sentence or anything. About the time MJ was 9 years old I started telling him how his brain was "wired differently than other people". He knows the word Asperger's Syndrome, but the way I explain it to him is that his brain works a little differently and he processes things a bit differently, and there is nothing wrong with it, why his dad has the same thing and thinks the same way and he does OK.

So, this has worked for a while, as we often sit down at the table and have our "Social Teaching Sessions" where I help explain to both my husband and my son what happened during a social event that we just attended that they didn't quite get, or it's where I might explain to them why they were not accepted appropriately or they didn't respond the "socially acceptable" way.

Now, really, I love my boys and I honestly cherish many of their Asperger traits, so I will tell them a lot of the social rules are just plain dumb, but it's the way most people do things and it's just something they have to learn, but I never tell them they are bad or wrong exactly, I just try to show them other ways to behave or respond in certain situations and I try to explain what they can do in circumstances where they are probably not going to understand or figure things out. I'll explain more in detail about some of our "tricks" to overcoming social misunderstandings in another post.

However, things have been getting difficult lately. I don't think MJ quite understands what Asperger's is exactly and I don't think he realizes that it is a part of him that isn't going to go away and that he needs to accept it and figure out how he's going to deal with it in life.

But how do you do this? I mean, how do you sit down your kid and tell them there is something "wrong" with them without telling them that there is something wrong. Does that make sense even? I don't think Asperger's is something wrong, and I honestly don't consider it a disability. I have always said it is just a different way of life, but as my husband, an Aspie himself, tells me that it is a disability, yet it is something that can be overcome. He has struggled as a boy growing up always knowing that he was "weird" or something was wrong or different with him. Why didn't kids like him? What was it that he couldn't figure out? He thinks of his Asperger's as a true disability, but it's not something that is going to stop him from succeeding in life. He finds ways everyday to overcome or challenge his Asperger traits. It's like trying to live normal.

Well, I told my husband that I couldn't do it. I'm the one who has been talking this all up for years trying to gently tell my son that he has Asperger's but it's no big deal because Daddy does too, and they are both just different, but I don't think he is getting it all the way. He knows he has different struggles that other kids don't, but then much of the time I think he may even think it is just funny the mistakes he makes. Who knows, but I told my husband that he needed to be the one to talk to him. It wouldn't be right coming from me. If anyone was going to sit down and truly tell another person that they have this syndrome, or this disability, wouldn't it be best coming from someone else who has lived with it all their life and really understands what it means and how it affects their life?

So, as I'm typing up this blog, my dear Aspie husband is downstairs having a heart to heart with my sweet, talented 11 year old son who also has Asperger's. Yet, this may be the first time he really hears everything it entails.

Problems of Labeling, Segregating, and Isolation

I've recently been in a lot of social situations with families or groups where there has been a kid with autism. Well, first off, I'm always surprised at how quickly everyone has been throwing out the "autism card" as I sometimes call it. It's like we just can't go to a social event and enjoy each others company without a parent or friend or neighbor coming right out and informing everyone there that this child has autism and so he/she must be excused for anything that may possibly happen that may be taken negatively.

And on another part, I have seen so often lately this kind of segregating or separating the "poor little autistic kid" away from the other kids as if he/she needs their own personal class, time, play area, etc.

Now most of all this is really non of my business, but it seems to me in the long run that these kids are being separated, segregated, and even isolated because of an autistic label.

I bet half of the people in any of these social situations wouldn't have thought twice about this kid having anything wrong with them unless the adults weren't out there shouting to the world about their kids' autism.

And it seems lately as if they are even giving the kid a reason to act up because the adults are right there announcing that they can't help themselves to behave.

Plus, why do they have to be separated from the other children? What is up with all this?

True, with MJ, I go right into any new school experience or teaching environment and set up an appointment to discuss his Asperger's. But I'm not doing it to excuse his actions or to get him separated from the rest of his class. I do it so the teacher can have a better understanding of certain reactions or habits, and so that they can be aware of any problems or misunderstandings that may happen. I mean, they are going to be directly working with him day in and day out, and it is important to go over certain things.

But, to everyone and anyone? I don't understand these people who go out there announcing to the world that "My child has autism!!!!" Not that we are in any way ashamed of the autistic label or Asperger's or anything, but I don't think it's fair to the kid to go out and shout his/her label to every man on earth.

Yes, if it is pertinent to a situation or environment then it is fine, but I don't think I need to go to MJ's school and tell each and every one of his peers and their parents that he has Asperger's and sorry for any misfortune that they may come across. It just seems too much.

MJ isn't dumb, and I know he doesn't want to be thought of as "the Aspie boy". My husband, although accepting of his Asperger's now, he isn't ashamed by it, but he doesn't broadcast it to everyone. He doesn't want to be treated differently and he doesn't want to be treated with "kid gloves" that sometimes happens to all these kids.

I've seen kids out there that may have Asperger's or parts of Autism that their family, friends, and neighbors seem to put on baby gloves and talk to them like babies, and expect only the absolute least of them and basically just let them get away with anything and excuse it to their label. I know some things can't be controlled, but I'm sure some of these kids take advantage of their extra leverage in freedom. And because of this label I've seen community classes and other groups allow these kids to have their own class or craft time or whatever because they need to be isolated to best help the child.

How does that help the child? All MJ wants is to be accepted and fit in a group of friends. Why would any kid really want to be separated and kept alone? I suppose I'm an advocate of the whole mainstreaming program in schools to allow kids to be with kids instead of themselves. Sure, it's good to be with other kids with disabilities, but they should be able to be with regular kids too, just the same way regular kids should see that everyone has their differences and be with kids with disabilities. There is a lot to be gained and shared by everyone.

OK, so I'm sorry if I've touched any nerves here. Everyone has their own points of views and this is just what it seems to me. Not everyone is parading their child out there with a sign around their neck saying "I have Autism", and I'm definitely not saying there is anything wrong with being autistic or an Aspie. I think there are so many wonderful qualities that come with my husband and sons for having those traits of autism and Asperger's. I just wonder sometimes if people are jumping on the bandwagon too soon to make their child stand out in a bad way.

I hope MJ grows and develops and becomes a successful adult. I hope that he makes it in life and figures out what works for him as far as his Asperger's. I know him knowing he has it and others knowing he has it can be helpful in many good ways as long as it is directed in a positive nature. I don't see having Asperger's as a disability. I see it more as having a different view on life and thinking. It isn't something to use as an excuse, but rather something to use as a better understanding of a person and to more easily accept them. I just hope MJ gets treated fairly in life and not with pity.