When should a child be told about their diagnosis?

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tessa2919
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10 Jul 2010, 9:21 pm

My eight year old son has Asperger's. I'm wondering what age I should talk to him about it. We do not hide his diagnosis from him. We talk openly to each other (my husband and I), but he has never asked us any questions about it. Can any teenagers or younger people with Asperger's give me some advice about whether I should discuss it with him now, wait until he asks questions, or at least tell me how old they were before they came to understand/accept Asperger's?



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10 Jul 2010, 9:24 pm

Right away. I learned when I was 14 but I already knew I was weird by the time I was 6.


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10 Jul 2010, 9:51 pm

tessa2919 wrote:
My eight year old son has Asperger's. I'm wondering what age I should talk to him about it. Can any teenagers or younger people with Asperger's give me some advice about whether I should discuss it with him now, wait until he asks questions, or at least tell me how old they were before they came to understand/accept Asperger's?


I agree that he should be told as much as he can understand as soon as possible before he starts making the wrong decisions about the source of problems he may have. Otherwise he will have to spend way too much time later learning that he is just different and not "wrong".

I was 9 when my diagnostic testing started and I learned the truth right after and started skills training soon after to help with the most troublesome symptoms. What does your son think those tests were all about?



tessa2919
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10 Jul 2010, 9:58 pm

I told him they were testing him for Asperger's Syndrome. Of course, he said "What's that?"
I explained that Asperger's is a type of autism. I told him that it isn't bad, but it does mean that he thinks differently than most people. That seemed to satisfy him, and maybe that's why he hasn't asked any more questions. I just don't know what else to say.



anjie
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11 Jul 2010, 12:03 am

When I mentioned I was aspie and he might be too. I wondered if I'd messed with his self-esteem so I prefaced by telling him of all the famous/smart people I know of who had/have
it. Saying we are in good company...He seems okay with it...He's 15.



Maddino87
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11 Jul 2010, 12:19 am

I was diagnosed at 10 in '99. My parents never told me, and I didn't find out until I came across school health papers six years later. When I found out I was shattered; I had never heard of it, didn't know what it was, and became frightened.
That feeling lasted for about 10 seconds. By then it had dawned on me that it explained why I felt so different from everyone else. And because I had never felt terrible about myself throughout my entire life, why should it be considered bad for me? It killed off the part of me that wanted to be like everyone else and brought me back into just being my true self.
I finally told my parents a week later about it. What they told me was exactly what I had first felt about the discovery. And they helped me to be more true to myself.
Afterwards life in high school suddenly turned around. I had confessed about the diagnosis during a health class chapter on mental health, and much to my surprise the reply wasn't finger-pointing and mocking laughter, but serious questions from classmates. And b/c of how people reacted I began to find myself a lot more comfortable socially.



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11 Jul 2010, 12:29 am

I think it differs for everyone.

Many younger children will be opposed to the diagnosis because children tend to interpret such diagnosis as negative and an indication that they are doing something wrong or something is "weird" about them and it upsets them because they know no other way to act.

But at the same time, many children with AS will perceive they are different on their own and telling them they are not if they breach the subject minimizes their feelings and can be just as frustrating, and make them doubt an accurate perception, leading to insecurity issues.

If the child is expressing any frustration about being different, you should tell them. Otherwise, perhaps tell them sometime in highschool when they are likely to realize they most definitely are different, need a concrete word for it, and can better relate to it and understand the implications.



Marcia
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11 Jul 2010, 4:26 am

My son is 8 years old, was diagnosed last year and I told him about it a few months later as it came up naturally in conversation. He's in another room just now, playing with his DS so I went through and told him about the OP's post here. When I said she was wondering if she should tell her 8 year old son that he had Asperger's Syndrome, my son said, "yeah" and nodded, then went back to playing his DS!

My son has told me that it's good to know about the AS because he always knew he was "weird" and now he knows why. He has told friends and classmates about it, and people in church as well. I gave him a couple of books to read, and the fact that he knows about AS means we can talk properly about some of the difficulties he has and how they can be addressed.

Good luck! :)



mommieof3asdangels
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11 Jul 2010, 9:39 pm

I never hid my sons diagnosis from him, but I never talked about it directly until he asked, at about 9, why he was "different" than other kids his age. I waited because I was not sure he would understand and I did not want to point out the fact he was not "typical" if he did not see it himself. So when he asked, I knew he was ready and we sat down and I very simply explained that some peoples brain, remember he was an Autistic 9 yr old, worked a little different than other peoples, and this was not a bad thing, sometimes it is good to not be like everyone else but he could do everything the other kids did but somethings he may just have to work a little harder. He accepted this and went on with life. If you do not make a "big deal" about it he wont either! I have 3 kid's and two are confirmed ASD and the 3rd, who I thought was NT is turning out not to be, so to me, My kids are "normal/typical" and I would not change them for anything, just make sure your son knows the same thing about your feelings and he will be great! Good Luck! :D



mommieof3asdangels
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11 Jul 2010, 9:39 pm

I never hid my sons diagnosis from him, but I never talked about it directly until he asked, at about 9, why he was "different" than other kids his age. I waited because I was not sure he would understand and I did not want to point out the fact he was not "typical" if he did not see it himself. So when he asked, I knew he was ready and we sat down and I very simply explained that some peoples brain, remember he was an Autistic 9 yr old, worked a little different than other peoples, and this was not a bad thing, sometimes it is good to not be like everyone else but he could do everything the other kids did but somethings he may just have to work a little harder. He accepted this and went on with life. If you do not make a "big deal" about it he wont either! I have 3 kid's and two are confirmed ASD and the 3rd, who I thought was NT is turning out not to be, so to me, My kids are "normal/typical" and I would not change them for anything, just make sure your son knows the same thing about your feelings and he will be great! Good Luck! :D



elepots
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12 Jul 2010, 6:00 am

my son is 7 he has just been DX with AS but he has known since he was a toddler that he was different and we told him what we suspected and explained about all the tests and the results when he knew what it was he felt better.



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12 Jul 2010, 10:22 am

We told our son at age 13, and really only did it because he would HAVE to be part of the IEP process at the end of the year. We hesitated to tell him because he hadn't asked questions, and we didn't want him to feel different from other people, AND we didn't want his diagnosis to be used by him as a reason to not accomplish whatever he could accomplish.

When we told him, it was NO BIG DEAL. We were amazed at how low-key it was. He asked a few questions, and that was it. I think it had little impact on him. A couple of times at school, he has talked about his diagnosis in class, somewhat inappropriately, and that was what we were concerned about -- kind of using it as an excuse when he didn't feel like doing something. But he doesn't do this often. He just doesn't currently have the skills to realize when he should, or should not, talk about his diagnosis. Talking about it is not a problem unless the group is not a receptive or understanding group, and right now he can't distinguish between the RIGHT situation to discuss aspergers, or an unreceptive or socially uncool situation to discuss aspergers.

Every once in a while, he sits down with us at night and starts a discussion about aspergers. It's always very fun to talk about it, and I feel like all of us come away from the discussion feeling better about our son's future.



tpalvado
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12 Jul 2010, 12:16 pm

I try to explain it to my son but he is only 5 so I don't think he quite understands. He is still having testing done. He had some done 2 weeks ago and he's having some done next month. I hate it though cause he gets so tired and it wears him out. This next testing is for ssi so hopefully it will be the last one for a while. I tell him that he is different but it's not bad. It is all up to the parent when they want to tell them



Kiley
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12 Jul 2010, 4:16 pm

Avoiding the issue can make it seem like something to be ashamed of. I'd explain it to him right away. My eldest was diagnosed at about that age, 8/9. He knew why he was being tested and was a big part of the whole process. Middle son was diagnosed at 11 but if we'd known earlier we wouldn't have waited to tell him. As it is I think he knew before we did but didn't think it was worth mentioning. He's very smart.

I don't think a child can be too young to be told, but they might not understand much or be that interested until they mature a bit. Some kids might be ready for all the details at four while some don't care much till their teens. I suggest explaining the basics, and then allowing your child to ask questions as they come up.

Welcome and good luck!



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14 Jul 2010, 1:36 pm

I think that every child should be told about their condition, when they enter Grade 1. That would have helped me out, a lot. I knew that I was different, at the age of 7. I wasn't stupid, and I knew, because my parents didn't approve of my behaviour and my special interests.


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