Did my mother do right in not telling me?

Post Reply New Topic

Hey, you could have been 45 before you found out, like me. No one could have diagnosed me when I was a kid. I'm fifty-five now.

Yes, we do. My sister refers to her oldest child as her "practice pancake" because they learned together how to be a family...the rest of her kids benefitted from all the mistakes my sister made with the oldest.

I told E on the way home from the neurologist about his diagnosis because I wanted him to know why he would be seeing a psychologist, and why he would have accomodations in class. I exlained that having Asperger's means that he thinks differently, and that the richest man in America and the smartest man ever both had it.

I don't know if it was helpful or harmful, but it was how I handled it. I hope my "practice pancake" doesn't get too scorched!

One of the things that needs to be pointed out here is that, when a parent makes the decision to TELL their child about the diagnosis, or they DON'T TELL their child about the diagnosis, the parent usually thinks about their decision very carefully. They sweat over it, they read about how other people have done it with their children, they worry about it, they lose sleep over it, and they almost always think that they've messed up royally when they've made their decision. Parents don't have all the answers, even though they kill themselves trying to find out exactly what the right answer is.

We also usually know which kind of kid we have -- the kid that would benefit from knowing about the diagnosis, and the kid that JUST MIGHT use it as a roadblock to prevent themselves from achieving their destination.

I doubt that most parents would keep information from a child that would hurt them. When you're a parent, whatever hurts that child hurts the parent. We are often floundering ourselves, wondering what the right thing is to do. We don't set out to mess up a child's life. It would kill me to know that withholding information from my son would make him miserable later in life. My way of doing things right now is this -- we haven't sat down and SPECIFICALLY talked with him about autism. We do, however, take him to social skills classes where there's other information about autism posted around the room, and we have numerous books around our house about autism, and my older son has been on autism walks, etc. We aren't hiding anything. But also, in my son's situation, he's not talking to a psychiatrist anymore (he used to just to qualify for state-funded assistance for the social skills class), he's weaning away from special ed classes, so that by next year, he won't be in any special ed classes at all, and he's just getting on with life, with all of the bumps that come his way (and at this stage, they are similar to the bumps any teenage boy deals with).

I won't know for a long time if what I'm doing with my son, for my son, is right, or if it will help him or hurt him in the long run. All I know is that I love him like crazy, and I hope he knows that.

Kris

It's like being adopted. If you've always known (like I did) then it's never an issue. Finding out later would have felt like a huge abuse of trust. Kids are a lot more able to deal with big issues than we think.

In some ways I can understand why she did what she did, but I think it was very wrong of her. Yes, knowing may have meant you would not try so hard to fit in, to have friends, etc. But knowing also may have saved you a LOT of grief, a lot of pain, a lot of embarrassment. In a way, I am speaking from experience, but my mother never knew about AS, never knew that at least 3 of her children and her husband were autistic. My mother made serious mistakes that she's now kicking herself for(including divorcing my father after 24 years of marriage) now that she knows about AS disorders and Aspergers thanks to my daughter and I.

I will say that I tried VERY hard to fit in, to have friends, I tried to be social. It was exhausting for me, I never felt like my friends were really my friends, and I knew there was just something different about me, I knew there was something WRONG with me. Why didn't I have friends? Why didn't I fit in? Why did people in general just piss me off and annoy me? I fought my true nature for nearly 30 years before stumbling upon Aspergers on the internet while researching emotional problems in children and Autism(I'd suspected since age 2 that my daughter was a little autistic but didn't really voice my concerns with anyone other than my husband until she was 6- she was formally diagnosed at 9- this past year). I read about Aspergers and the more I read, the more I knew that not only was my daughter autistic, but so was I and so was my husband. It was obvious to us all. It was obvious to my psychiatrist when I finally sought help this past summer too. LOL!

Has knowing that I have autism changed my life? You bet! It has changed my life for the better. Now I understand myself and am at peace with myself for the first time EVER! I know that there is nothing wrong with me, that I'm just wired differently. I also no longer exhaust myself trying to establish social contacts and having friends. I really only felt like I was missing out on friendships because of the societal "norm" I was trying to copy. I know now that I don't need to be "normal" to be happy. I just need to be me.

My advice is to give your mom a break because she was doing what she thought was best for you, but also let her know how you feel about what she did. You can share the stories of people here like me so that she can understand what not knowing can do to a person and how much better life can be when you actually know who you truly are. You can't accept yourself for who you are if you don't know who you are.

Good luck.

I have told my mother about his post, and the replies I have gotten (Thanks a million for them by the way )
She explained all the factors that she considered, and I must say: I agree that it was better not telling me

Not that I think that I wouldn't have tried to fit in if she had told me, but because she evidently gave it a LOT of thought,
both when I was first diagnosed and every day after that. You can't really blame somebody if what they did was
obviously the right thing in their head. Also, she said that had I ever asked, she would have told me in a second.

Thanks to everyone who has posted their thoughts on the matter, they helped me get my own thoughts into perspective.
I hope this post makes others think as well.

>>I hope this post makes others think as well

It does and thanks for sharing.

I can't turn it off which is a good and bad thing.

All parents have similar dilemmas raising kids but this one is eating me up. Getting it wrong can have a pretty hefty consequence I think.