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?

1 comment:

AidKeeg said...

I do not excuse my son's behaviors to strangers. I do not hide the fact that he has Asperger's. but I feel that it is on a "need to know" basis. If you are going to have some sort of contact with my son (teacher, family, coach) then yeah, you need to know. But the lady at Target who seems him have a meltdown? Nah.