Tell your son/daughter about their dx

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If you hide their dx I feel that your child will be left in the dark unnecessarily. Perhaps giving them a book like Cats have Aspergers for younger students and Tony Attwood's book or other books such as the Aspergers/Autism FAQ book that can let them learn about their diagnoses.

Also see if they want to have an account on Wrongplanet Forum so that they can interact with peers on the syndrome. The more you tell them about their dx the better it will be for them later down the road.

Teach them self-advocacy so that they can get the services that they need. Emphasize that Autism is not like cancer and you can't die from it. Its just another way the mind works. There are other children who have health issues that impact their health. I'm not downplaying other diagnoses but they need to know that having Aspergers can help them in life.

Take Bill Gate for an example he is one of the richest people in the world. Don't buy that people with AS won't have a stable job they will just with a bit more effort. Who knows they can be the next millionaire. Keep a positive outlook and try not to stress over the dx. Just go where the road takes you.

I don't believe Bill Gates is proven to have Asperger's Syndrome, and that is it only speculated.

And actually, from reading threads in the Parent's Forum for a long time, it would seem most parents do inform their child of their dx.

I wasn't told about my Dx, until I was 15. It caused me a great deal of pain. I thought that I actually was Mentally ret*d, because that's what my high school peers were presuming about me. I felt better about myself, when I found out that I was AS, or that I had mild autistic tendencies, as they coined it, back in those days. I was autistic and not the R-word.

If the diagnosis is known to be extremely accurate, at some point, I would tell an older child about it, not a younger child. If the diagnosis was believed/suspected to be wrong or inaccurate, I would not mislabel the child but rather refrain from giving a diagnosis until an extremely accurate, correct diagnosis was secured even if that process might take some time - such as a number of months, even years in some cases.

A correct diagnosis is good.

A wrong diagnosis (mislabeling) is bad.

My son was diagnosed when he was 7 years old, and I told him about it a few months afterwards when it came up naturally in conversation. Not only am I sure the diagnosis is correct, but he does have a lot of appointments with SLTs, OTs etc which he had started asking about, in addition to the assessment itself which involved a few meetings with various professionals.

My son is comfortable with his diagnosis, talks about it and has done a bit of reading himself about Asperger's. He said it was good to know about AS as he always knew he was different and now he knows why.

I have, only a few times, had to remind him that it is an explanation not an excuse for his behaviour, but overall the fact that he knows about it is very positive as it gives us a shared understanding of why he has problems with some things and a basis from which we, and he, can come up with potential solutions.

My son was diagnosed when he was 8 and I told him about it shortly thereafter;. He had already told me that he was different from other kids, didn't think like them, etc., so I hoped that the knowledge would be reassuring to him. Getting the diagnosis and then learning about the disorder made a huge different for him, me and our entire family.

I wrote about it in one of my blog posts, if you are interested in more details:
http://asdhelp.wordpress.com/2010/08/17 ... the-truth/

Good luck!
Joanne

Our ODS' evalation should be complete before October. If he is Dx with AS, I will most definitely be telling him about it soon after and we will talk about it often. He needs to know that he is not sick and that there is nothing 'wrong' with him! We're all in this together and I don't believe we can accomplish what we want if we're hiding things from him.

BTW, he just turned 5.

They did not have the dx for Aspergers when I was young so I spent my childhood and teenage years suspecting that I was crazy. I would see how the other would behave and do my best to imitate their behavior but it would always blow up in my face. They told me I had ADHD but from what I read in the fourth grade I had none of the traits so it made me more withdrawn out of fear of being labeled insane. When I did talk it was about my special intrests that the special education teachers would do their best to shut me up. They tried to have me put on riddilen I guess to make a zombie out of me to end my spurts of non-stop talking luckily my dad refused.

Last month August 6th, 2010 I finally got a dx of Aspergers and was also told by the doctor that he believed I did not have ADHD. I was holding back the tears when I found out I was not insane just different. But was angered that I was "cheated" out of a proper education because of being wrongly placed in special education.

Travelplus, I can't thank you enough for your suggestion of this book. We've been trying to find a way to have a conversation with my 10yo about his diagnosis, and he has absolutely refused to talk about it. I was able to leave this book out for him in the car, he read it, and when he got to the part about vocabulary, he smacked himself on the head and said "Oh, NO, I have Aspergers!" Because the book handles the issues in such a sensitive and nonthreatening way, we were able to have a conversation about how he is and is not like the cats in the book...and how cats are fine just the way they are, and so are people with Aspergers.

(Forewarning for those of you who use this book: we did need to have a conversation about the literal implications of cats and Aspergers. I finally phrased it like this: "It's not unusual for cats to behave this way, it's natural for cats - but I think that the book is saying if these cats were people, and they still acted like cats, we might say they had Aspergers.")

I just joined this site for some insight on when to tell my 5 1/2 year old son about his Aspergers dx. He got this at 2 1/2 (it fit, he spoke English & German, memorized everything - this was at about age 2). He's come a long way behaviorally & socially & now in "general ed." Kindergarten this year. He was too young to understand before, but our neurologist told us to wait until he starts asking questions & realizes he's different. So far, he hasn't realized that all kids aren't going to OT, ST, social skills, etc, since he sees lots of other kids at those things. Someone else told me you should tell kids at a young age since you don't want to make it seem like a bad, hidden thing. He has lots of great traits/gifts and I would definitely try to keep it positive, and probably get some of the books everyone has mentioned (Cats have Aspergers, and Different Like Me were recommended to me). Any insight from older Aspies on when they would have liked to know about their dx?? Or insight from parents who got a dx when their child was really too young to be told? Thanks!!

The doctor who diagnosed my daughter warned against telling her about it, but she was 11 years old and wanted to know what was going on. I couldn't lie to her. It had been extraordinarily difficult to even get her to visit the doctor's office in the first place. I told her everything. We reviewed the DSM4 criteria and she agreed that it described her. I think the result was enormously positive. Other posters wrote that they always knew that they were different and the diagnosis came as a relief. With an understanding of the diagnosis, my daughter became much more willing to go to weekly therapy which seems to have been helpful.

I think a lot depends on how you feel when you explain the diagnosis to your child. I believe that AS is a difference, not a disability. And I believe that I have AS. I think this made it much more comfortable for her. She has never expressed any bad feeling about the diagnosis or the therapy.

I think honest disclosure is the best approach, although I can understand that it might take some parents a while to understand the diagnosis.

5 years old seems too young. I think 7-10 is the best bet, at least telling me at 10 if that were even an option would have been the best bet, but since I didn't have a dx there really was nothing to base questions on (no therapy, appointments, services...) So maybe it's different for your children. But don't assume because they aren't asking about it, it doesn't mean they don't know something's different.

My friend told her 9 year old daughter today, after having put it off for a long time. It sounds like it was a positive experience, and that she was relieved to understand why she had trouble with things like riding a bike. She asked if she knew any other kids with autism and when she heard about my son said "That must be why I don't feel shy around him." I wouldn't be a bit surprised.

Willaful, thank is great news - and very heart-warming!

My daughter is 5, diagnosed AS which definitely fits her (I'm having a really enlightening experience reading Tony Attwoods book!) but I won't be telling her until she is older and can fully comprehend what it all means, don't get me wrong, I am aware that kids understand more than we think and her IQ is in the "superior" range so I'm sure she understands even more than that! But I don't think it will benefit her at this age.

We have however, talked about Autism in general terms, what it is etc. and I'm in no way hiding it from her, but I don't see a benefit in explaining it just yet.

I'm not diagnosed with anything, but I had a really hard time socially growing up, and in learning about AS believe it fits me well (and knowing about it has helped with ongoing social issues and differences), if I *had* been diagnosed, I would have wanted to know about it when I was about 8 I think, it would have helped me through a lot of painful experiences, before that age I was busy in my own world and was separate but not really bullied at all.

CarsMom, I can only speak as an older teen who grew up knowing. That said, I say tell. But I DON'T say sit him down and explain it in detail. Mention that there's something, tell him what it's called. answer any questions as they come up. When he's really ready to process it (and needs to), he'll ask; before then, my best guess is that he won't care. But tell him so that you never have to sit him down at an older age and explain that you kept it from him. Tell him now so he never finds out-- because learning seems to be a shock, to those who learned. I... was too young to learn it; it's like I've always known. And that's really easy, in some ways. Personally, I took several years to care and to research.