Do parents tell their kids they have AS?

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Ok, so I'm pretty new to this whole thing in general.

I first heard what Autism was when a friend of mine from college suggested that I might have this condition. This was about 5 years ago. I went and saw a Dr. specializing in Autism and she said that since I was over 18 and "high functioning", and that since the tests were expensive, that I shouldn't try to go through with an official diagnosis, but that even though she couldn't officially diagnose me at the time "there was a likely possibility" that this was my case.

So I just ignored it for a while, really.

But I had also been misdiagnosed with bipolar disorder and the medications I was on made things MUCH worse and my reactions to the medications were always the reason why I was kept on them. I've been off them for almost a year and doing the best I have mentally in 10 years, however, my AS tendencies have come under the radar recently, and I'm noticing where things in my life could have been better if I had known and understood what AS was at an earlier age. And looking back at my school records... I had a -2.33 SD on social aptitude when I was 5 years old. This should have been obvious enough, but this was in the 80s before AS was really accepted, so I'm curious as to who here might have been misdiagnosed with mental illness because you never were told that you had AS.

And to the parents out there: Do you keep this information from your child? if so, why? or when do you tell them?

I'm also completely curious as to if people *in general* know how to treat us and if they recognize AS people on introduction. I have never been gainfully employed, yet, my skills and cognitive aptitudes are on the extraordinary side. It's just that I have never been able to read if people understand my work- my parents say, none of it matters if im not getting paid, but I don't even know if wages are real things or why it is privileged and not based on work or value. I mainly worked in music, but also have aptitudes in math, film, video, media analysis, painting and can cross apply everything. Not many people understand quantum computing or could completely analyze Wagner's Tristan und Isolde, you know? I'm kinda living in a weird poverty. I have no friends yet really want a social group and I work in such an odd manner, that I can't be expected to show up every day at the same time, yet my work will get done and surpass my peers.

I actually need an assistant so I can not stress on the "simple things." (which I don't have because my family has no idea I'm AS and I have no money to afford one) I get more stress through tying and retying my shoes all day than I do figuring out and finding recursive functions with prime numbers or composing music. Why can't I afford a cheeseburger today?

Thoughts? ideas? solutions?

My mother told me I was first diagnosed. I was 12 then.

i was in the room when the pediatrician diagnosed me. i was 15.

I told my son that he had AS a few months ago. He is 6 years old. He was starting to ask questions like "Why do I go to physical therapy and occupational therapy and other children don't" and "Why does that sound hurt my ears and no one else's?" Clearly, he was starting to wonder why he is different from other children and so I felt that it was time to give him the answer.

I put together a long list of ways that AS is advantageous for him ("AS is why you knew most of the alphabet before you were 2 years old", etc). Then I made a list of ways that AS makes his life more difficult. I refrained from any judgements about whether AS was good, bad, or neutral. I feel that he has the right to decide that for himself.

He understood it fairly well and even got up to explain it to his class at school when an autism specialist came to the class.

i am somehow your case, jmark. except that i am getting paid, as a scientist, i wouldn't be able to do anything else. i, too though, got some understanding about why i had problems with things others didn't only later in life and kept wondering how it would be different if i knew. my family has no understanding of AS at all, i tried to explain, but they are in denial. i even think it's too much for them to understand, so i don't try anymore.

sometimes, i remember something related to autism pretty obvious from my childhood and i don't understand why they didn't care to seek some understanding. but yes, AS/HFA wasn't as known, i grew up in a small town, going to psychiatirst was shame, because it was for crazy people only.

anyway, it's such a waist of your potential, you seem to be very resourceful.

At 13 when I was diagnosed, I was told that I had it, compared to when I was diagnosed with ODD and because of the treatment, they didnt want me to know. I hated the treatment, it was like torture, and worst part was it was a misdiagnosis. At 13, noone would have been able to help me with the AS, simply because I refused to believe I was different. Then about a month and a half ago I really started to notice just how different I was, and had to research this condition I knew I had but refused to believe in. Then I realized just how much of me it explained. I found this place while reading a wikipedia article, and have been here everyday since.

I told my son right after we got a little quiet time after the diagnosis (within a day of diagnosis). I kept it pretty simple. "The doctor says you have Asperger's Syndrome, it just means that your brain uses different parts than a lot of other people to do the same stuff. It means that you are really really good at some things, like your mazes, and some things are harder for you to do than a lot of other people, like making friends." His response: "Oh... hmmm, I THOUGHT my brain did things different." (8 years old) I assume that when he starts to notice more things that seem harder for him than his peers he will want to know more.

He was also in the room during the diagnosis, he hears a lot more than he lets on at times.

My mom and me were talking about school or something. She just looked and said we think you have PDD. Whenever she started with wrap around and everyone I researched like crazy. We talked about it. I didn't go in a denial stage. I knew I was different. Everyone researched a lot. I accept it and don't let ti control my life. Maybe because I lived through life not knowing I had it?

yes. always tell the kids....

Not mine or my teachers.
Even though I had AS on record.

When I was younger, they just expected me to somehow magically mix in with the other children without telling me how I should go about it.

If they had told me exactly what was expected and not expected me to do so much confusing chatty group-work, I'd have been much better behaved if I'd been able to work alone. Because I didn't know exactly what they expected of me, I felt awfully confused. They kept telling me off for things that I honestly wasn't aware that I shouldn't have been doing. Nothing was explained explicitly, it was all very informal. And they wondered why I kept saying things like "I don't understand" and "I'm confused" . It's not like I didn't give them enough hints or wasn't expressive of myself: I was incredibly descriptive and expressive.

If perhaps they'd explained the concept of AS to me in a friendly way maybe with reference to children's cartoons such as "Inspector Gadget", perhaps I would have been able to recognise my behaviour and how my world view differed from most other people's.

Or perhaps they didn't make this connection?

Perhaps they thought, mistakenly, that little girls couldn't possibly be "absent minded professor types". Or that any girl who acted out in ways they couldn't immediately explain and didn't form cliquish groups with other girls was somehow "sick in the head".

No one ever explained to me what AS was all those years ago, only that it was a horrible and frightening "disease" that no-one could understand and that I should be ashamed of being "naughty". Everyone was either in denial or blaming everybody else.

I was also told by some people, who were chocking on their tears, to forget that I "had" AS because it "wasn't important" and they believed that the doctors had made a genuine mistake.

Last edited by AmberEyes on 20 Jan 2009, 11:19 am, edited 2 times in total.

I got diagnosed when I was 9 and told shortly after.

I have said things to my son (11) about AS, during little windows of opportunity over the years. The thing is, though, he tunes me out if I talk about things like that for more than a few seconds. He's thinking about building Starcraft levels and writing comic books, and I think he finds the more "serious" discussions tiresome. Talking about it is an ongoing process, that pops up here and there, the same as any other discussion about personal growth, who we are, and stuff like that. I have told him that his unique thinking style falls under the category of something they call "Asperger's", and it's why he sometimes goes to Mrs. R's room, because that small-group atmosphere is better for his thinking/learning style. If I asked him right now what he knows about "Asperger's Syndrome", I'm pretty sure he's say, "What the heck are you talking about?" because he doesn't seem to be interested in hearing about that kind of stuff.

i was diagnosed when i was a teenager and my parents didn't really tell me. or maybe they did and i wasn't paying attention or even cared. anyways, later on in my life, another doctor told me i hd aspergers and apparently my records showed it or something.

I was diagnosed Bipolar and ADD with a severe anxiety disorder. I didn't realize I had Asperger's until I was 40.

I wish I had known what I had when I was younger. It would have made life much simpler. I wouldn't have felt like such an outcast, so miserable and confused.

Now, I'm fine. I'm okay with being an Aspie. My children have Aspie-like traits....and I think perhaps my little one has it, but it hasn't been confirmed. If it is, I will tell him. No question.

My mother never told me I had been diagnosed with Autism. I found out when we had a conference with my IEP (Individualized Education Program) Manager, when I was 13 years old. (I was diagnosed at age 8.) The lady showed mom some paperwork and I got to look at it too.
On the papers, it read: Disability: Autism.

Even today, mom denies that I have Autism, even though I have always shown the signs and symptoms ever since I was an infant.
She refuses to discuss it at all. She sees it as a tragedy. A horrible thing, never to be brought out into the light of day.

Thats too bad, as there would have been so much that could have been done to have made things better... My parents tried with me, but I refused to accept being different so everything they would do, as soon as I realized it had to do with AS, ADHD, etc, I would stop doing anything about it. And it has only been since I started accepting my diagnosis that I have been able to actually do some growing, however slow it may be.