Help! Advice on telling your child they have Aspergers

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MomsEyeView
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28 Apr 2011, 8:06 pm

mamamo wrote:
We knew it was time to tell my son when he was coming home from school and having horrible meltdowns saying things like: "what is wrong with my me?" "my brain isn't right" "I shouldn't be alive" Etc. .


That was exactly what was happening with my son too. I believe everyone copes better when they understand what they are dealing with, so we decided to explain things to him when he was 8 (and had just been diagnosed with AS).

I explained to him that the Drs discovered that his brain works differently than most people's - one part of his brain is really, really smart, but the other side has some difficulty, which is why he has trouble making friends and managing his emotions. He was relieved to have a logic explanation for what he was feeling and now totally accepts it for its advantages as well as disadvantages - and himself!

Here is our story, if you'd like more specifics:
http://asdhelp.wordpress.com/2010/08/17 ... the-truth/
Good luck on your journey!


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Aspergers: A Mom's Eye View
http://asdhelp.wordpress.com/


Annaquin
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29 Apr 2011, 9:52 am

mamamo wrote:
Often we mention Aspergers in a positive or just normal way, like when interesting scientists talk about things with incredible passion we always say, "they must be an aspie!"
Aspergers is a totally normal word in our house. No big deal.


Same thing here only with autism. I just feel that he is in-daunted with so much negative imagery about autism ( :roll: thank you Autism Speaks and Jenny Mccarthy) that we need to hit back with just as much positive or normalcy as we can.



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29 Apr 2011, 12:18 pm

Hm, I haven't told my 10 year old yet. He was just diagnosed 5 months ago with High Functioning. He doesn't like the word "different". I told him it's great to be different and that I wouldn't want to be like everyone else .. and that's the truth! I also remember being his age and wanting to be like everyone else. I hated my NAME because it was different and it was something I grew to accept in time. Sooo, as much as I try and teach him the importance of being your own person and not to "blend" in with everyone else, I don't think telling him he's "different" because of his Autism, is going to make him feel confident in himself. That's my opinion.

He's also old enough to know a little bit about Autism because there's a couple of students at his school who have low functioning Autism (non-verbal, low IQ). I worry that if I tell him he has Autism as well, that he'll compare himself to these boys. Again, it will take effort to explain to him otherwise but I think his initial response isn't going to be, "I'm so relieved!" like some of the children have said here.

I'm on the fence with this. I do plan on telling him eventually but I also don't want to make it a big deal. I don't want a label hanging over his head. He had issues around ADHD and has used it as an excuse for things, inapporpriately, so I feel like I have to be careful in how I approach him with Autism.

So, any other advice on the topic here, will be great! :)



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29 Apr 2011, 6:11 pm

Just throwing out there how we did it, if that will be helpful: my son was absolutely resistant to the idea that anything might be "wrong" although he also was constantly berating himself. One day, on our way to therapy, I asked him why he thought we were going. He said "so I have somebody to talk to if I need it...but I don't need it."

We finally went for testing and got a clinical diagnosis (I think this is a good idea before disclusure, BTW - you don't want to have to go through this twice.) I had explained that we were trying to get a diagnosis - about how doctors make diagnoses for diseases, but sometimes therapists make diagnoses to help people figure out how to make things easier...so it didn't mean he was sick, just that we needed to find the right way to teach him.

After that, I asked him if he wanted to know what his diagnosis was, and the answer was a resounding "NO!" He was very afraid of acknowledging his difference and of giving it a name and making it real. So, back to the drawing board....

At the advice of posters here, we purchased "All Cats Have Asperger's Syndrome" and left it next to his seat in the car. He started to read it, and then suddenly said "Wait a minute, I have Asperger's Syndrome! I don't want to have Asperger's Syndrome!" and threw the book away, crying. Later on, when he'd calmed down, we went through the book together, talking about how if it was OK for cats to be like that, it was OK for him, too - and discussing which symptoms he felt he had and which ones he didn't.

Flash forward 6 months, we've got him in a good program, he's really made huge progress (in part because he understands better now that he has a name for what it is) and he decided to disclose to the kids in his classroom, using the same book...which has turned out just fine; the kids seem to be cutting him a little more slack, even. He even told me the other day "Mom, I like having Asperger's."

I'm not saying this will happen for everyone in this way, but disclosure - even though my son was resistant - was the best thing we ever did.



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29 Apr 2011, 7:15 pm

ASDsmom wrote:

He's also old enough to know a little bit about Autism because there's a couple of students at his school who have low functioning Autism (non-verbal, low IQ). I worry that if I tell him he has Autism as well, that he'll compare himself to these boys. Again, it will take effort to explain to him otherwise but I think his initial response isn't going to be, "I'm so relieved!" like some of the children have said here.



Just throwing this out there- my son goes to school with some non-verbal lower functioning kids on the spectrum, in fact he is often peer-paired up with a boy who doesn't have the elopement issues my son does, but is also much lower functioning and non-verbal. Although we talk about autism a lot around here, it is just one of my son's characteristics. Saying he has autism is like saying he has green eyes. He doesn't run around comparing himself to everyone with green eyes so I don't really see it being an issue with him comparing himself to others who have autism. He knows that the one boy, who he is often paired with has autism, but he is able to say that "Sam needs help to talk, like I need help to sit still." Someone who is considered "low-functioning" is going to have positives you can focus on and in turn focus your son on if he does start comparing.

I don't really have any advice or ideas as far as the rest of your comment, but thought it might help knowing how we handle that part of it. Again my son is a lot younger then yours so I'm sure that would come into play as far as how you treat it.



aspie48
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29 Apr 2011, 7:19 pm

be honest and tell him both the challenges and the advantages.



momsparky
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29 Apr 2011, 7:28 pm

This was why the book was helpful - it is just a listing of symptoms (which are remarkably like cat behaviors, and my son likes cats.) If there's a symptom that doesn't apply, which there most likely will be, you will have an opportunity to talk about how all kids on the spectrum are different.

DS was angry at first, but we spent time discussing famous people with Asperger's (though for some kids that can backfire - not every kid has savant skills and some are more aware of that than others.) We did eventually say it was a type of autism, and since he's in an inclusion classroom, we had to deal with some comparisons and some anger about that, too...but I think he's starting to come around even on that part of it.



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01 May 2011, 1:27 am

This is how NOT to let your kid know he has autism
Go through 5 years of testing as a young child which totally made me feel like something was really wrong with me. Vaugly explian my difficulties and seperate issues caused by autism so I feel like a freak of nature
Then when I was 28 and watching temple grandin..learn that I have autism
So I tell my mom and she said....You were diagnosed when you were 8 years old but I did not want to tell you because I did not want you to feel labeled

So I spent my life up to that point feeling like a total freak even reasoning that I was heyoka (native american sacred clown) in a past lifetime.

The sooner, the better cause I started noticing that I was different by the time I was 6 and I felt something was horribly wrong with me and there was no one else like that could understand what I go through.

Now I know I am autistic and wear the title like a badge of honor


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01 May 2011, 7:57 am

jojobean wrote:
... even reasoning that I was heyoka (native american sacred clown) in a past lifetime.


This struck me, because one of the things we showed my son a little later on was Alex's video that includes the Native American man discussing how autistic people are considered holy. http://www.wrongplanet.net/postt114120.html



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01 May 2011, 11:12 am

momsparky wrote:
jojobean wrote:
... even reasoning that I was heyoka (native american sacred clown) in a past lifetime.


This struck me, because one of the things we showed my son a little later on was Alex's video that includes the Native American man discussing how autistic people are considered holy. http://www.wrongplanet.net/postt114120.html


That is interesting. read up on heyoka's cause they really do have some striking similarities to autistic folks. Ohhh if I only lived in pre-columbus US would I be cherished instead of regarded as someone not fit for society.... Anyone have a time machine???


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