When/How to tell

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Registered: 03-28-2003
When/How to tell
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Tue, 01-01-2008 - 10:12pm

My 8 year old son was recently diagnosed with asperger's.

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Registered: 09-13-2006
Tue, 01-01-2008 - 11:39pm

David is 10, and was dx about three and a half years ago.

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Registered: 03-26-2003
Wed, 01-02-2008 - 12:58am

Both my kids do know. I found about 9 to be the right age but it wasn't a sudden kind of thing, more an over time thing so they were not surprised. I used books but we also have an open philosophy of ASD and all special needs.

My DH and I are both special education teachers and have had students home with us since the kids were very young. We also know many people with a variety of differences so it was not something that was foriegn to them. As such the attitude in our house was never "special needs" or "disability" but rather that of differences. We don't use the term "disability" with the kids though I do elsewhere because it is a disability, I just don't want them to consider themselves unable.

What we have told our kids from very young is that EVERYONE has gifts and needs. Everyone is good at something and special in some way and everyone needs help with some things. the point was to make them see the strengths of people with needs. There is Margaret at our church (adult with CP in wheel chair). She is an artist and drives a car and has a strong faith. There was a young boy, Owen, with profound special needs. By the time we met him they were in the habit of noticing what was good about people first because they are people first. Owen was a very loving boy (he passed away a year ago unfortunately).

When my kids asked about why they went to doctors or therapies we would tell them because their brain worked differently and these things would help them learn and do things better. We have also always made it a point to point out what their gifts are as well.

Finally about 9ish (could have waited longer for Mike but his sister was a tattle tale) we told them. I have some AS adventure story books for kids that age where the character with AS is the hero. We would give them those to read. Cait immediately related to the girl in a book we gave her. When she found out she was autistic like Daisy she was excited, lol.

After the initial introduction we also got the kids these workbooks called "aspergers, what does it mean to me". It helps them really understand themselves. That is more for a middle school age kid I think by the time they can truly understand it.

Over all my rule of thumb is to treat it as I would sex or adoption. Answer questions on their level as the questions arise. Don't lie about it and don't make it the big ugly elephant in the room. It is part of who they are and there is no denying that. By treating it as a big ugly is going to make it harder for them to accept down the road.

They will let you know when they are ready for the information. It is an ongoing process. Even now I have to explain more and more to my kids as they ask questions. The disability being what it is, these kids are not going to be able to truly comprehend it for a while if ever really. I mean a good portion of the disability is understanding that they don't understand other people and how to socialize. The very nature of their challenge makes that hard to comprehend, kwim?

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Avatar for mary_ellen03
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Wed, 01-02-2008 - 7:09am

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Registered: 03-27-2003
Wed, 01-02-2008 - 7:20am

I can imagine it is a really difficult decision to make most of the time. I think it all depends on the child and how he/she handles information.

My daughter was diagnosed at 8yr. She felt different and so out of control before the diagnosis and it scared her because she knew something wasn't "right" but didn't know what it was. So I chose to tell her right away and it was actually a relief for her to know there was a reason for all the "craziness" in her head. That's what she calls it. She knows she has Asperger's and anxiety. She's proud of her Aspie label and loves to talk about it. Sometimes I think she tries to use it as an excuse to get away with things but I expected that. LOL




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Mom to Erin (19) and Haley (10yo Aspie)


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Avatar for mary_ellen03
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Registered: 03-28-2003
Wed, 01-02-2008 - 7:29am

rbear,


The autism specialist at my son's school suggested something similar to what you said.

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Registered: 03-28-2003
Wed, 01-02-2008 - 7:39am

Jill,


It's awesome that your DD is proud of her aspie label!

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Registered: 03-27-2003
Wed, 01-02-2008 - 8:36am

That is wonderful that he already has goals as to what he wants to be. Haley says she's never going to work, get married or anything... she wants to just live with me forever. LOL!!!

You'll find the right time and way to tell him. Being an Aspie is definitely something to be proud of. It may come with challenges but there are so many good things too.

I don't know if it will be helpful but I was searching for new books about AS and came across this one... "I Am Utterly Unique" by Ellen Marie Larson. It's an Alphabet book where each and every letter corresponds to a positive quality associated with Asperger’s. I was thinking about getting it for Haley because she tends to have self esteem troubles now and then. Kind of comes in waves with her.




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Mom to Erin (19) and Haley (10yo Aspie)


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Mom to Erin (19) and Haley (10yo Asp
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Registered: 03-26-2003
Wed, 01-02-2008 - 11:07am

There is a program they can do in school called "Understanding Friends" that is from the TEACCH folks that is all about all kinds of differences. My kids had that done at school every year they were in elementary. My kids even took part and never realized it was being done for them but it did help the other kids understand my kids and my kids understand lots of differences.

The book "what does it mean to me" is also from the TEACCH people and if you do a search it is pretty easy to find but it might be a little old for him just yet. Get it though and give it a try. It depends on the kid, Mike wasn't ready at that age but there are those that are. Cait did it in 6th grade which was perfect for her.

Does your son like fiction stories? There is a whole series of Asperger Adventure stories that is written right at that 9yo-ish level. "Of Mice and Aliens", "The Blue Bottle Mystery", etc.

http://www.amazon.com/Mice-Aliens-Asperger-Adventure/dp/184310007X/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1199289769&sr=8-1

If you go to that link and scroll down just a bit you will see a bunch of them. Also there is a book that was written by a 10 with AS called "Asperger Syndrome, The Universe and Everything" by Kenneth Hall. Mike really was able to relate to that boy a LOT when he was that age. I read the book with him to help explain. It is also written around that age level but Mike needed some help with it particularly understanding it. We did that right after he found out. We read a chapter every night as our special time together. That also worked really nicely.

Hope that helps.

Here is the workbook. It wasn't available on Amazon when I got it but it is now.
http://www.amazon.com/Aspergers-What-Does-Mean-Me/dp/1885477597/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1199290005&sr=1-1

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Avatar for mary_ellen03
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Registered: 03-28-2003
Wed, 01-02-2008 - 1:27pm

Thank you for the links.

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Registered: 03-26-2003
Wed, 01-02-2008 - 1:38pm

You may be able to access many of these from your local library as well. They have a good range these days. Some are harder to find though.

I know our library system has an online search and request feature. If they don't have the book I want at our local library I can often request it and they will get it from one of the other libraries in our chain (it is a whole county library system).

I have found there are some ASD books I love and some that were not worth the price. I have gotten to the point with most books that I check them out via the library first before I actually purchase them.

I hear the Freaks books is good but I haven't gotten it for the same reason. Though now my DD is in a middle school Aspergers class and her classmates are not as positive as she is and she does often lovingly refer to herself as a geek, nerd, etc. Though she thinks it is humorous.

Renee

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