When should a child be told about their diagnosis?

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Mama_to_Grace
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14 Jul 2010, 5:40 pm

My daughter was diagnosed over a year ago but I just told her a few months ago (she just turned 7). She brought it up. I think it has helped her immensely in knowing. She confuses "diabetes" with "asperger's" and will sometimes say something funny like "that's because of my diabetes". It has given her a way to explain when she doesn't feel "right" and not feel pressured into doing things that are overwhelming. She is just starting to use the "lingo" and ask for "pressure" or say "not today-I don't feel good". I struggled with it a lot because I didn't want her to feel that the dx = "broken". So I still struggle to point out the great things she does and say "you're so good at that because you have that powerful Aspie brain!"



Blanketyblank
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15 Jul 2010, 6:48 am

My son was diagnosed 3 years ago when he was 3. We have never hidden his diagnosis from him but i started to talk about it with him this past year, and got him a couple of helpful age appropriate books about Autism to read on his own. I think it's important to talk about it openly to get rid of any worries that there is something "wrong" with them. I'm not sure how much he understands about our talks but I'm ready to help with any questions he brings to me :)

Good luck :)



TeaEarlGreyHot
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15 Jul 2010, 2:27 pm

All the adults hid my diagnoses from me until I was 16. For all I know, there were more they just didn't bother to tell me about. My life would have been so much simpler if I had been told earlier.

So, I say right away.


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DandelionFireworks
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10 Aug 2010, 4:35 pm

I was told as soon as my parents knew. Sooner; they talked about what was going on while we were trying to figure stuff out. I think I'm one of the first to... well, grow up Aspie. I mean, I could never have been normal, and I'm glad to have known for so long. Because of that, I don't believe I've ever had a moment of finding out, exactly. It does mean I never lived the "trying to be normal" phase so many others have (well, I did, but I was your son's age when it fell apart completely), but then, I don't know of anyone who's glad they didn't know.

Tell him everything. I mean, obviously, don't overwhelm him, but don't spoon-feed him the baby explanations.


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angelbear
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11 Aug 2010, 5:05 pm

My son got diagnosed at 2.5, and he is now 5. So far, he hasn't seemed to notice that he is different from other kids. I don't want to hide it from my son, but I want to make sure he understands what we are talking about. I think I will know when he is ready. He was just so young, I really didn't think it made sense to tell him right after his diagnosis.



trojan51
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14 Aug 2010, 11:16 pm

i was told around my 10th birthday (in 2001), but i had been diagnosed around my 6th birthday (in 1997 when the AS diagnosis was rather new)



bjtao
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15 Aug 2010, 10:36 pm

My son is 10 and just diagnosed. I told him about the diagnosis in a kid friendly way. He ACTED like he could care less, like he didn't even hear me actually.



trojan51
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16 Aug 2010, 2:26 am

how did you go about doing that? and by the time hes 18 like i am he will understand it all very clearly



bjtao
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16 Aug 2010, 8:16 am

I told him the test results, pointing out things that the tests showed he struggled with, such as using trial and error rather than planning with the blocks, not looking the people in the eye, not participating in conversation, not participating in play. I told him that the reason he does these things is that he has a type of autism called PDD-NOS. I explained that his sensory problems and anxiety are also related to this disorder. I told him there is nothing wrong with him, but since he has been so unhappy and uncomfortable he will receive therapy to help him overcome certain things to make him happier and make life easier for him.

To me it is all about his comfort. He has not been happy because of many things related to the disorder. It is not about making him socially acceptable for other people's sake. If he is OK with it and it doesn't cause him stress, then it is fine with me. But the fact is that he has not been happy because of many of these issues.

I really hope he will participate in the therapies. I don't think he will though.

He could just care less about the diagnosis. Or maybe he just doesn't have the words or emotional skills to express how he feels. I was hoping he would be like 'ah-ha' like some of the children reacted according to some parents on this board. I wished he would be happy that there is hope.

It actually made me feel worse after I told him because he had no reaction. I will try getting him some books on the topic to see if that will help him understand and feel better.

The fact is, and I can't forget this - he does not care what is going on around him. If other kids make fun of him, he doesn't notice or care. He doesn't care what he looks like. He only cares about things he likes and comfort of his clothing. He doesn't care if he has other people to enjoy things with. His needs and motivations are different.

Like you said, maybe when he is older he will understand or it will be comforting that there is a legitimate and medical reason for him being unhappy.



ChasUFarley
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16 Aug 2010, 9:16 am

Our son who's 5 years old (nicknamed Oofie - from his rocking), has been diagnosed autism-high functioning. We've talked about his issues openly with him in the room but he's no where near understanding how he is different. He doesn't care and criticism of any kind; including from his peers, just rolls of him almost to the point where he comes across as being over-confident. The reality of it is that he couldn't care less. I envy him for that... We've decided we're going to treat it no differently than if he had some other medical issue or even the fact he's left handed - it's just who he is and that's that...

How can you explain to someone who's "different" that they're not the "normal", when their "normal" is "different"...??? 8O



Asp-Z
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16 Aug 2010, 9:17 am

They should be told ASAP.



DW_a_mom
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16 Aug 2010, 11:56 am

bjatoa, it is going to take a while for your son to process the information. I admit I was a little more circumspect in what I told my son, but he was also younger. Regardless, every child has their own way of processing new information, and you are likely to get questions or indications of emotions at odd times over the next year. Much of he deals with it will depend on how he saw himself before he got the term.

To the OP, I am firmly in the "tell them," camp, but obviously it should be done in an age appropriate way. How much any of us go into details depends on what you sense from your child, how much they seem ready for and interested in. For many kids, is it enough to be told their brain works differently, that difference has a name called AS, it comes with gifts and burdens, and now that teachers know they will be helping out with the burdens.


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houldsworth1
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18 Aug 2010, 7:30 pm

That is amazing - this is exactly what my wife's blog post this week is about:

You can read the full story here - http://asdhelp.wordpress.com/

But, in a nutshell, we told out child when he was eight (he is 10 now) and believe it was absolutely the right thing to do.

We also told his teacher and, through her, the rest of his class at school. That was a little scary, but worked out to be the best thing - instead of looking at him as 'weird' they got behind him and have been helping him ever since.

Best of luck!



ChekaMan
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21 Aug 2010, 6:00 pm

As soon as possible, tell him.



momsparky
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21 Aug 2010, 6:33 pm

Are there any of you out there who were diagnosed as kids but didn't want to know? We have been going back and forth over whether we should tell my son (and we're partly reticent because we don't have a definitive diagnosis, it's probably Aspergers but it is probably a lot of stuff) I started a conversation with him once about why we were seeing a counselor, and he responded with some very clear statements that he didn't want to talk about/admit to any differences he might have. He is extremely perfectionistic (was just talking to a friend about how he sees losing a raffle as a personal failure) and wants to be "normal" (his words)

We have been honest with him without using the actual words: we've explained that he needs different strategies for hime because he thinks differently from other kids, and that it's OK to be different - but we haven't talked about diagnoses or labels.

Thoughts?