What to tell your child?

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Hi everyone.

My name is Erica, and my son Christopher is being evaluated for autism. He is 6 1/2 years old and in Kindergarten. Smart and sweet, with sensory integration disorder, dyspraxia, and poor social skills. We've been undergoing many evaluations, the latest being speech and language, in which he also seems to have delays. We haven't gotten the full report yet. With my research and studying, I really think my son has AS. It seems like the perfect fit for him.

Anyway, my question relates to how much information he should have at this age concerning his diagnosis. It's obvious that he knows he's "different" from the others in his class, and I'm really trying hard to make sure he know this is NOT a bad thing. He thinks that all the doctors and specialists he sees are there to help him get ready for 1st grade, which isn't entirely untrue.

So, I'm asking: How much of this should we tell him about his diagnosis? I want to be open with him, but also don't want to make him feel even more singled out.

Any advice on this is appreciated!

~Erica

http://www.amazon.com/All-Cats-Have-Asp ... 1843104814

I found this book to be very easy for kids. The little girl I worked with just loved the book and the pictures of cats. It became a nice springboard for discussion on how AS manifests and answers a lot of questions before he even has questions.

welcome to the WP community!

Merle

That is not too far off from the age my son was diagnosed.

When we started the process, we referred to the things he had already noticed, and explained that these people were going to figure out WHY he had these problems or differences.

When we finished the process, we told him that we now knew why, there was a name for it, that there were many people like him, that his brain was wired a little differently than most kids, and while that would make some things harder for him, other things would be much easier. We told him that many people think Bill Gates has the same type of brain. We told him that now we knew, it would be easier for teachers to understand and help him.

We've rarely mentioned the name of it; that isn't that important to him.

He was relieved to know there was a reason, and that it brought gifts as well as the known burdens. He's been totally cool with who he is.

I have always tended to talk to my AS son more in terms of how his brain works differently, than over-using the associated labels. He understands that his brain works differently, and that this means there are things he can do better than others, but other areas that he needs to work on. I have probably mentioned the word Aspergers twice in the last year ie. hardly at all. As far as I'm concerned, it is much easier and more helpful to describe how the brain and its connections work (or don't work), as this is what makes sense to a kid. Good luck.

I just got the All Cats Have Asperger Syndrome book for our family and while it is cute, and fairly accurate, I think that Alex (5.5 years old) would not benefit from it at this time- although I will be ordering multiple copies for extended family who I know will not read anything longer.

I think it does talk quite a bit about the negatives & struggles of it, and right now that's not what Alex needs- he knows he is different but there are quite a few pages of focusing on the challenges (ie the doesn't fit in with the other kids type of stuff).... Alex fixates on this sort of thing, so we are cautious in that respect as a few incidents at school with other kids have left him feeling like he deserves rotten treatment from the other kids... We aren't in denial, but we are careful with our approach because of this...

Anyway, I also ordered "I am utterly unique" and we got it today- it's a quick read, in alphabet format, of the many positives of AS-and the only mention of AS or HFA is on the cover.
Here's the amazon link:
http://www.amazon.com/Utterly-Unique-Ce ... pd_sim_b_3

We read it today and Alex was totally revved up and happy about himself afterward.

I know the positives of AS and we are more than familiar with the challenges, but having grown up being the "odd kid" (in all aspects- I just don't blend) I know that helping him focus on the benefits, the strengths is going to get him through the heartbreaking stuff. (the message I got when growing up, when teased or having difficulty, was that I should change and that I just wasn't good enough...it's really important to me that Alex doesn't wind up with those scars, or at least not as many of them, as I think some of that may be inevitable, but we sall see)...

Hope this helps...

(sorry, kind of went on and on about the book thing, without saying that this, and using some of the terminology in regular conversation so it's not odd and out of place, is how we are handling it right now... when he's ready we'll give him more information... it is a little different in our home though as I have self-diagnosed AS, so lots of the difficult things I have dealt with already and they are the norm for our family)

Thank you for the responses.

My son will finish his speech pathology testing and go back to the developmental pediatrician tomorrow. She will do an autism screening on him then, I think.

Whatever makes my son different, I just want him to know that he's fine the way he is. And that our goal in all of this is for him to learn to have a productive and happy life how he is. Does that make sense? He's a great kid, just being himself, and we need to find ways for him to be successful.

Anyway, thanks! I'll update more when I know more.

Erica,
That makes perfect sense.
Let us know how the developmental ped visit goes!
Good luck,
Bek

User gbollard has a blog with interesting posts on this subject:
http://life-with-aspergers.blogspot.com

And one of the specific blogs on there:
http://life-with-aspergers.blogspot.com ... re_10.html

Thanks! That blog was exactly what I needed to hear. I have him bookmarked now.

there are also alot of general kids books that deal with the idea of being different-and that being different is ok....one of my favorites is "Fluffy the Porcupine"...there's also Oliver Onion, and that book about the patchwork elephant ( can't remember the name of that one though)

My son was 7 when he was diagnosed, and we've always been completely up front and honest with him. We had that All Cats Have Aspergers book, and it was a good place to start for him, because he was able to identify with many of the feelings in that book. Keep in mind, our son was 7 and I think even a few years difference in age makes them far more aware of some things. We did go through a very short period where my son was quick to blame every last behavior he had on the fact that he has HFA, but we nipped that in the bud pretty quickly and told him that being on the spectrum wasn't an excuse to behave however he wanted. There are moments when he'll still try throwing it out as a good reason for having done something, but we're pretty firm with him on the rules of the house and what behavior we will and will not accept - regardless of autism. I think it's important for kids to know and be aware of what is going on with themselves, but we really try not to make it a huge issue in our house. Yes, he is on the spectrum. Yes, he is being evaluated for an IEP at school, but no - that doesn't mean he doesn't have to do chores or be polite at the dinner table. It's just another part of who he is.