Did my mother do right in not telling me?

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When I was about seven years old I didn't do well in school. (I have no idea what I did exactly) but I apparently didn't make friends.
It just so happened that my mother through her work (Kindergarden teacher) knew some psychiatrists who specialised in children.
After a rather lengthy interview they told my mother that I clearly had aspergers syndrom (They even use a video of the interview to teach about aspergers syndrom I heard) And here comes the cause of my question: She waited EIGHT YEARS before telling me! It wasn't that she was embarrased. She told my teachers, and informed them to tell my classmates sometime when I wasn't around. She told my wrestling instructors. And she told my siblings (How she made sure none of them ever told me I will never guess)
So a couple of years ago she finally tells me. Her explaination was: "If you had known you would have stopped trying to fit in. Stopped trying to understand others"
You know what really bothers me about that? That she most properly was 100% right. However that does not change the fact that I felt insulted when I learned that everybody knew but me.
What are your thoughts on what my mother did? Because I really can't figure out my own on the matter. I have turned out quite well after all... but how would I have turned out if she had told me? These are the questions that haunt my mind. And you parents of aspies, if you havent already told your children, you might want to let them haunt your thoughts for a while as well.

That's a difficult one. I think she should have told you. If I were in your position I think I would feel hurt by that. It's a bit different for me, because nobody realised what was going on - they just thought I was a strange child I think. Had I known I was an aspie, the world would have made a lot more sense. However, I think I would have used it as an opportunity to shun all social interaction and things I didn't like. "You can't make me do that - I have AS and it's not fair." And so on. Particularly as a teenager. "I don't want to shut up about [special interest] - I have AS and I want to talk about it." So it was difficult growing up but it did equip me with a set of skills I might not have had otherwise.

Having said that, there are two issues here. The first is the practical issue that not knowing your diagnosis made you try harder to deal with difficult things and learn those skills. In my view, however, that's swamped by the second issue which is trust. I would completely freak out if everyone knew but me. I really hate people talking about me behind my back. I've always sort of felt as though the rest of the world was in on a secret which they didn't tell me - that's more to do with other people being NT and understanding things which I didn't understand. If I found out that there actually was, in a very real sense, a secret that they didn't tell me, I would go nuts. That's just me of course.

Telling everyone who knows you, yet not telling you?

That just seems really wrong.

I agree. My parents did the same thing to me, except that my DX was not AS because it was the 80s and AS was not being diagnosed yet. My mother also told everyone that I had a neuromuscular disorder that I never even had! It still creeps me out to think about it. I think their motivations had to do with controlling me, and making me powerless.

I feel she should have told you. After all, you have more of a right to know than anyone. Besides, why should you have to try to be just like everyone else if you are NOT just like everyone else?

i think i'd have a hard time trusting my mom again, if that had happened to me...............my mind goes to: well, what else do others know about me that i don't know....what else are you keeping from me ?

I feel that children should be told...I think that we should have open discussions about it around my son as well. This is not what our entire life is about, but I think he has not only a right to know, but more importantly, when as he gets older and starts noticing the differences, etc...he won't be ashamed by it, but rather know that he's special and that with autism comes many special gifts.

We talk about his speech delays, but we focus on his wonderful gifts. I believe that if there is nothing to be embarrased about, then there is nothing to hide.

My parents didn't say anything to me...however, I always felt alone and lost...confused...because they too took me to a psychiatrist when I was younger...I never heard what the outcome of that was...I was also put in special ed classes for a while and I can still remember the face of the boy whom I thought was so cute, sitting next to me rocking at the lunch table...I thought something was wrong with me...My self esteem suffered greatly because of it...

On the other hand, we focus on showing the world all the wonderful gifts my son has, while also allowing others to understand him better when he has a meltdown because he can't express his feelings...

I am the parent of two boys -- one who was diagnosed on the spectrum at age 4, and another who most probably would have been on the spectrum, but went undiagnosed because he was older and we didn't know about Asperger's as he grew up.

When the youngest was diagnosed, the older son was between 14 and 15 years. The older son had MORE of the typical AS symptoms, but they were less severe than our younger son.

As we learned about the younger son's diagnosis, we automatically said "Oh, my gosh, this definitely explains our older son" -- and we told our older son about it. He didn't seem to be too affected by it, partially because he probably didn't really see himself as AS and partially because the younger son was so much more severely affected. The older son, now 21, leads a very happy, normal life in college, working, has a girlfriend and tons of friends in general. He has "quirks" that reflect our feeling that he has AS, but they only crop up sporadically.

Younger son is 11, almost 12 now. We haven't told him. Part of the reason is EXACTLY explained in Liopleurodon's first paragraph -- fear of our son using AS as an excuse to not learn needed skills. I asked a friend who had a son who grew up dyslexic, but didn't realize it (she maintains that she had told him at one time, but he forgot), what she thought I should do about telling my son. She said that when her son realized that he was dyslexic (he was in his 20's by then) he was shocked and bothered for a few days, then came back to her later and said "I'm glad that I didn't know, because I would have used that knowledge as an excuse to not accomplish what I've accomplished."

Our younger son is doing well in all ways, and when we do tell him, I'm thinking that it will be not too big a deal for him because his brother has it, but didn't know he had it (none of us did). Also, we did NOT tell his friends. They may have learned through teachers or parents, but we did not tell them. I felt like that was not information his friends needed.

Also, my son has had social skills classes in a facility that had autism posters all over the place. On some level, he may already know, based on those posters and things he may have overheard us talking about. I do think that he doesn't think he has severe autism, because he has talked about "kids who have autism" as if he is not one of them. But with Asperger's, there is so much positive that can be pointed out, so many good examples of people who are either successful or happy with their situation in life, I don't picture our son as feeling all that "different" from others.

I do have strong concerns about his feeling hurt about not knowing while others knew. That DOES haunt me for sure. I wouldn't want to hurt this kid for ANY reason -- he's the best thing that ever happened to our family, and I think that he's an incredibly positive example of what's possible with Asperger's at his school, his scout troop, and church. I have no idea how he's going to feel when we tell him, but hopefully he will know that he is incredibly well loved and admired by his family and friends for who he IS.

Kris

I don't understand the belief that knowing a dx will create an excuse not to work hard. I think it's cruel. I was always told that I was weird, bad, wrong, silly, whatever people could call me. From authority figures. I internalized those things deeply. I resent my parents for the way I was made to feel. Because there was no explanation for my behavior, I was constantly told that I chose to be difficult.
Knowing about Asperger's gave me hope and I've been in therapy for a year now. I am not crazy! Having hope helps a person work harder for their goals.

We told my son that he's autistic. His classmates know because the self-contained classroom he reports to is an autism clinic. It's something we bonded over because of my husband's developmental delays and my Aspie personality.

It's gives the difficulty a name. It doesn't excuse him from trying hard and it doesn't give amnesty to discipline.

Yeah, she should have told you if she could also have taught you coping stratagies.

And Yet, And Yet, And Yet I did not tell my adopted child she had Fetal Alchohol Effect for the VERY SAME REASON!! !!

And also so she wouldn't hate her birthmother. Instead, she ended up hating me. It's so hard to know what to do when you're facing your child with extra difficulties. Is she the type that is just looking for an excuse? (She was) Is he the type that tries to overcome?

And you never know if you were right or not until 30 years later.

Last edited by lelia on 08 Feb 2008, 1:44 pm, edited 1 time in total.

Reading through your replies made me remember a part of my story that i had forgotten:
The unexplained trips to the school psychologist! Do you have any idea how paranoid that can make you?
Having some woman (in my case) ask you all kinds of questions without a word explaining why.
Please parents of aspies, weather you tell your kids is your choice, and there are good reasons both for and against,
but if you ever feel the need to send your kid to a psychologist TELL THEM WHY!

Ever since I posted the above, I've been feeling worse and worse and crying inside. But I just remembered something.

Somehow, I don't know how, and I wish my mom was around to ask now, she was able to keep secret from me the knowledge that the school thought I was ret*d the first five years of school. When I went to my special reading class I walked proudly because I thought it was a HIGHER class. After all, I was reading in kindergarten and in 4th grade had read all the Golden Encyclopedia and had started on my mom's row of Reader's Digest novel collections. In 5th grade I read my first SF novel in them (Fall of Moondust) and got so excited that I now write SF novels. Yeah, I was picked on every day, but I never knew why. And then in 5th grade the school system discovered I was nearly blind from nearsightedness and an IQ test showed I was the smartest kid they had ever had and likely ever would have in their school. I'm glad I never had to spend a moment thinking I was ret*d just because the school thought so.

I think that either she should have told you, or not told you but not told anyone else either (except people that really needed to know like teachers - and told them to keep it quiet). For me, to not know and have everyone else know would be terrible - I always have the feeling that I know less than everyone else about what is going on anyway. But between whether to tell noone or whether to tell the child in question, I think it depends on the personality of the child - some might use it as an excuse to not try, others (like me) would try anyway, but would be relieved to know that there was an explanation. I guess a mother knows her child best, and in your case perhaps (as you say) it was best to not tell you. But to tell your schoolmates and siblings was something that I think she shouldnt have done.

my son is 7 and an Aspie. We've told him he's much better than the other kids at some things (acedemic) , and not as good at others (understanding games, sitting still, etc.). Both are true so it's an easy out. All the adults/teachers know it's AS and the other kids were told he has a harder time with some things and may need a bit of help and/or patience from them. They responded well for now.

He's got social skills group and a bit of OT but so do a bunch of others but for different reasons. He doesn't seem to feel like he's the only one fortunately.

Right now the other kids know he's different and accept it. So does he barring the occasional but rare outburst of "i'll never be as good" type of comments. NT kids probably say the same thing so I'm temporarily OK with it.

Is this good enough or do we tell him about Aspergers, what it is and why he's different?

This is such a refreshing dilemma from a person who is autistic because it is such a 'normal' teenage response to something that has happened in your life. Did she do the right thing? Well obviously not, she is a mother of a teenager after all - and you are a teenager. Quite a typical one. We blame our mothers for all the hurt and damage we feel has been done to us throughout our childhood and adulthood sometimes. So you'll carry on blaming her for this and for everything else that goes wrong in your life - you'll probably never put the good things in life down to her either. Which is good. It shows a healthy, happy, well adjusted young adult.

My guess is she is a great mum - you sound like a 'normal' teenager. Why did she tell the others??? Perhaps she wanted them to go easy on you - not put you down - understand why you were not quite the same as everyone else?

My son was told about his autism when he was about 10 years old and he hates being told that he's autistic (he's 13 now). He says he is 'normal'. Why does it have to have a label?? To carry the weight of a label when you are very young when all you want is to be treated and be like everyone else is not always a good thing. For some people yes but perhaps your mum wasn't taking any chances.

Thanks pallywag... you are the first person in SOME time to call me normal and mean it. And while I am not technically normal. It is still nice to feel normal once in a while.
I do recognice that my mother wanted (and indeed still wants) what is best for me. BUT I was a guinea pig, and I have mixed feelings about that. I surpose all parents kinda play it by ear when it comes to raising their children. And I DO like the person I have grown up to be, so what am I whining about? Well... I USED to feel so alone in the world, and when I was told that I have aspergers that (mostly) went away. So while I agree with her in not initially telling me, i stil wonder if she waited for a little too long. The question in my head really is: If I had known one year sooner, then what?