Parents, why don't you tell your kids about their diagnoses?

Post Reply New Topic

I'm a teen with AS, and while looking on this area of WP, which, admittedly I never go near, I came across several parents talking about how they did not tell their HFA/AS children of their diagnosis until a later age.
I can understand not telling a 6 year old, but a 13 year old?
I was diagnosed at 14, and if my parents had taken me to the psychatrist, gotten a diagnosis, and refused to tell me, I would be furious when I discovered the truth.

I think it is because the parents are grieving themselves and scared, and have not gotten it all worked out in their heads. They are either in denial, or don't feel like they can provide the answers to questions from the child, or the emotional support the child will need when they find out.

Usually these parents view it as "something wrong with the child" and can't stand the idea of "breaking the childs heart" "how can I tell you there is something wrong with you, that you may never achieve all your hopes and dreams, that you may never "fit" socially and always have problems". They may view telling the child, as taking away their childhood, and putting adult problems and worries on their shoulders. They may worry that the child is going to be so upset they may hurt themselves or become depressed. They may worry that the child will "use it as an excuse of poor behavior". They may worry that their unsocially skilled child is going to run out and tell all their peers, and then they will be ridiculed and made fun of.

Some parents may hope that in time, the AS will just "go away". (Usually these are the ones in denial).

Basically, it is parents being dropped labels with little education of how to handle it, and given little information about what that "label" actually means.

My sons doctor did not leave it to me as my decision. he flat out said "I think you have Aspergers" to my son. This left us in a talespin. Her refered us to a good webside on ADHD but not one on AS. We both had a lot of misconceptions, and unanswered questions.

I agree though, it is important to tell children that they have a problem like this. It depends on the child, I think in younger kids, (under 10) I would tell them that they are unique, and have been diagnosed as having a hard time with socialization. When they come back with more questions, or the AS starts to present itself after 10, I would definatlely let them know about the "AS" and not hold anything back. But you have to mention the positives with it. Say, "you know how you are so great at ...." Well, that is because your brain works differently. You have strengths that many people don't, but you also have difficulties in other areas. There are other people like you, so many, doctors say that people that have similar strengths and traits to you are said to have Aspergers.

Basically, don't lie to them, but don't leave them thinking "there is something seriously wrong with me"!

I strongly believe that since it's part of what makes Gavin, Gavin - that he absolutely should be told about it. Gavin was less-than-impressed with when his doctor and I originally told him about his ADD. As he said - it really doesn't matter what it's called or what it is, all that matters is what's going on with him. I can't really argue with that. But, Gavin also knows that he can tell me anything and I'll always listen, and help if I can. He hasn't gotten a formal diagnosis letter for the Aspergers yet, but yesterday we went to our pediatrician, and I took that observed behavior list that I'd been working on with me. She didn't even get through the first page before she looked up at me and said "He's an Aspgergers kid - now why on earth didn't I ever see that before now?!?" She must have apologized to me 5 times. I appreciated that - but the truth is, I don't blame her. She and I are working on a plan, both to help Gavin out as well as to find a good doctor that can give the diagnosis that I can take to the district.

My son is 7 and I throw the word, "autism" around a lot but haven't directly said, "Pop, you are autistic and this is what it means". He is talking about cognitive delays which prompts me to tell him that he was delayed with walking, talking and controlling his impulses. He repeats all that kid stuff, "so and so is stupid, he can't talk" and I correct him.
He doesn't understand everything he hears so he gets a distorted view of what minorites are and who can be disabled. I really think a lot of schools/teachers have disability and diversity awareness backwards.
He can read really well and I'm sure the "talk" will be prompted by him seeing me on WrongPlanet and finally ask what I'm reading.

as it's all a spectrum, it's hard for any of us to make a blanket statement that we can tell our kids about their dx as soon as the dx comes..............age is also a factor. as with most issues in life, ( whether you're aspie or NT) most parenting guides will tell you to only tell your child that which you feel they can handle...we told our son his dx once we got the report and were able to go through it ourselves & digest the information ( he was dx-ed at 13). When he went for testing we told him that the doc would test him to see exactly what it is he had & how we could better help him ( at that point, aspergers was not a thought in our minds)

I think if my son had had an earlier grasp on language we would have told him about "Asperger's" right off the bat. Though it's kind of moot as lack of speech and the "deaf" behavior was the main red flag for getting him referred in the first place. I have a feeling that we'll have the talk before his next birthday (Dec).

Since I'm AS myself, adult and has been in this condition for almost 40 years, it's easy to forget the harm and anger raising from not being understood when you realy realy REALY try to get accepted. I have three kids, one diagnosed AS, one with strongly suspected authism in adition to severe ADHD, and one daughter with ADHD/DAMP disorder and authistic signs.

I didn't mind. I was just myself. But my parents had a hard time when I grew up. A elder brother and a sister that was successful in their careers, and me just wanting to kick school into the sewer....

Anyway, I managed to get a school contract on education, because I was seen as "bright". Jesus how bad that period was. Not because of my company of friends, but because of the teachers! They couldn't simply understand that they bored me! (this is some 20 years ago).

I still haven't bothered to collect my grades from school. I was so upset with the way I was treated that I made my teachers days a hell. I was asked to hold classes for people older than me. Weird. But what could I do. I was immature, unexperienced, and chewed match on university level 5th period for breakfast. It was pure hell. And teached people 3 years older than me.

grrmblfh...... This annoyes me. A lot. There's four people that has seen my "potential", one is my ex, two employees, and the board of directors in one of my companies. I don't actualy care (neither does my neighbours) when I go out on the balcony and just scream. I usualy get a couple of similar frustrated screaming from the other balconies.

I'm just so tired of this...

I was not diagnosed until I was 23 but as I kid I knew I was different and didn't fit in and couldn't figure out how to fit in. If I had been diagnosed as a kid I would have wanted to be told. It would have been nice to know there was a name for my problems and that I wasn't just some sort of freak. I also have a great deal of trouble initializing conversation and speaking up about things that are bothering me, thus I wonder if Aspie children who have not be told, wonder why they are different.

My parents told me when they knew, at age 9, but I didn't actually want to know what it was until 13, and then they gave me actual details.

We suspected our son was an Aspie at 5, got official diagnosis at 6 and told him a few days before he turned 7.

The psychologist had told us that he would let us know when he was ready to bed told, for example asking why he's different etc.

Just before he turned 7 Daniel was crying frequently and asking why he was different to all the other kids. So we told him about Asperger's.

We bought a book for him called 'Different Like Me - My Book of Autism Heroes'. That book helped him heaps.

And of course, WP has made a huge difference!!

I'm glad we told him. I think his self-esteem would be totally destroyed if he didn't know. He's very proud of his brain.

Smelena

aspergers has intrigued me since I first was introduced to it--a few years back. I worked with an hs student. he was blunt, interesting, and didn't give a hoot what his peers thought about him. This was someone who was empowered, supported by his mother (who made sure we knew about his AS). If he didn't have this support, who knows. teachers have a difficult time with AS/HFA children because they might seem like know it alls, or obnoxious ,or willfully disobedient, or rude etc.

I find, and this has always been the case, adults either love my son or are instantly irritated by him. I could never understand it. Now, I think I do.

I am a teacher/person that appreciates a sharp critic, humour and singlemindedness in a student. I am not the majority.

take care,

equinn

I was diagnosed at about age 2 1/2, and my mother had told me about a "communication disorder" that I got "fixed" since the first grade, though failed to mention "autism" or "Asperger's". I really wasn't sure what exactly she meant. I didn't actually know I had it until I was 9 (the end of third grade). I didn't even learn it from my mom, but instead from an IEP paper my teacher handed to me. It was in an orange envelope, and she said that I couldn't "peek inside". I did it anyway. I knew what "autism" was and the image was of the LFAs; mute, banging your head against the wall, institutionalized forever, never to be seen by the general public as anything more than a mindless person that is there to be alive. After I read that one word, so many emotions went through my mind, and my mood fell into an incredible depression. I thought my life was ruined, and that despite being intelligent and probably knowing more geography than any of the teachers, that the government would take me away in a straitjacket and confine me to a padded room (my eyes are actually beginning to water as I type this). So I went to the most isolated little hovel in the room, and cried silently, because if anyone saw me, I would have to explain it to them.

If only someone had truly been there to help me understand what it was, it would have saved me the trauma of basically thinking your life is ruined. Parents, I urge you to tell your kids, and please spare your kid from the incredible trauma of finding out elsewhere.

I suppose we'll tell Vlad when he's old enough to understand and care. Right now, he's pretty oblivious to the fact that he's different than other kids, and doesn't seem to know that he's probably the only 4 year old to ever throw a tantrum screaming "Mommy, the trilobites are gone!", or to adopt a sowbug as a pet because it looks like a trilobite. Maybe one of these days he'll notice that the other kids draw their families and their pets and such while he draws brontoscorpions and wooly mammoths.

For now, he doesn't notice, and since it doesn't have anything to do with paleontology, I doubt he could care less. I don't see how it will have much impact on his plans for life, since he wants to "dig up dinosaurs" when he grows up, and it seems like paleontology is a very accepting, tolerant field for an Aspie to go into- if anything, it might be an advantage.

I guess we'll tell him if he ever shows any curiousity about it at all. So far, it seems like his little sister might actually start asking questions about it before he does, so I guess we'll explain it to her. When other kids have asked, I've just explained that different people are good at different things, and Vlad is not good at talking like a regular person, but he is good at drawing, and knows a lot about dinosaurs, and does like to play with other kids, he just doesn't know what to say.