How, When, and What to tell your AS child about Asperger's?

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(Side note - gotta love when you typo your own darn user name, geez)

I have a 10-year-old (4th grade - United States) fairly typical (for whatever that word is worth) Asperger child. He sees the world in absolutes, things are or are not, people are or are not, the mild reprimand leads to instant reaction of "I hate myself" or "I hate my life." He is semi-social, very much wanting to have "friends" though he isn't entirely clear that the purpose of friends is not strictly to have people around to listen to you talk about only the things you want to talk about; he appears to be open to learning on this front though, and we're working on that. Other than the usual ways that kid "push" at their own parents (modified by the rules of being aspergian, of course), he has no behavior issues at all. He is a good student, some "trouble listening" - which we all know usually means someone just needs to be speaking directly to him instead of to the whole class, and he actually very much enjoys interaction with other children that he is used to. His obsessive behaviors are actually somewhat less than other AS kids I have met but, of course, still present. They don't usually get in the way of other things, though if there is an assignment to draw a Christmas scene, etc., we can count on the current obsession being woven into the drawing, that kind of thing.

He has taken note and let me know about other children saying things to him sometimes about "you always take things so seriously." He has been picked on a little bit by older kids who basically knew he was vulnerable, though he was new to the school at the time, so that may have had more to do with it than an eccentric behaviors he had shown at recess (though I'm certain that was probably there too; I just happen to know that those particular kids pick on any nice kid they know they can hurt). He basically showed no fear about that, but he did have a little anxiety that it would continue and has worked to avoid that group of kids at recess (school did take note and addressed the problem, also getting his grade out of recess before that grade showed up).

He knows that he can be obsessive. He knows that he sees things differently than some other people. We have talked extensively about every person being different and the fact that EVERYONE has their own challenges and that we have to be patient with people as they work on their challenges or just deal with them.

I could write 40 or 50 more chapters, I'm sure, but this seems to be a good point to ask:

~~How/when/what do you/did you/will you tell her AS child about Asperger's?

~~Did you tell them they had it or did you just explain it first and let it be?

If you have Asperger's yourself and learned that prior to age 20 or so, I'm VERY interested to know your story and how things felt for you? How things changed after you learned your diagnosis? How you viewed yourself? Did you wish you'd been told earlier, later? Did it help you to know? hurt you to know?

A couple of the very basic concerns that I have on the issue:

~~I'm afraid telling him will give him "an out" for everything. "I don't do that because of AS." or "Oh, that's because of my AS." I was diagnosed with ADD, PTSD, and severe depression as an adult, and I KNOW for myself how easy that is to lean on, especially if you are afraid of trying something, etc.

~~I'm afraid of *confirming* to him that he really, really is different from everyone else in a way that has a special name. We were lucky enough to have a wonderful school for him when he was younger, just for kids who learn differently, and several of the kids had AS. To be frank, our son was probably the most overall high-functioning AS child in the school in many ways, so while I could point to other children he knows who deal with some of the same issues and challenges, doing so would mortify him because there are things about those other children that, of course, my child thinks are "weird" or are much more low-functioning. So, I fully believe that comparison/grouping would depress him instead of helping him to not feel alone.

~~Why do I consider telling him? Because I'm also afraid that by not giving him a better chance to understand that part of himself and why he thinks/feels/behaves the way he does, I'm denying him the chance to know himself and/or to decide what lengths he would like to go to in order to "fit in" or if he'd like to just explain some things about himself to other kids. Am I denying him the chance to find TRUE friends who would help him out or help him grow? who might actually want to be there and grow with him?

I'm the adult and can read OASIS and the zillion other books and studies and and and and... and *I* have trouble understanding and piecing together what to expect or believe or think or how to deal with parts of AS; how on EARTH is he supposed to do it? Will it make him end up feeling MORE lost instead of giving him the chance to find himself?

.... and there I just totally spun my brain into circles and can't find the trail to even keep talking, which is why I'm here, looking for your stories and experience.

Will you please consider sharing them with me?

We had told our son by the time he was 10. He knew he was "different," and we were simply giving it a name. We also told him that Einstein, in whom he was very interested, is believed to have been on the spectrum. At some point shortly after telling him, we gave him the book Asperger's, The Universe and Everything, by Kenneth Hall. Kenneth Hall was 10 years old when he wrote it. At the point when we told him about the Asperger's, our son had not met anyone else (to his knowledge) who was on the spectrum, and reading the book made him feel like he was not the only one like him. He was very excited by it.

If one of my kids turns out to have Asperger's, I'll tell her or him, "congratulations, you're one of us!" I haven't ever actually been diagnosed, but from taking the Aspie Quiz and reading up on the issue, it's pretty clear.

I think this is a legitimate concern. I actually feel that I see it more than I would like here on this forum.

In your place, I would present Asperger's to your child as a positive. For example, there's strong evidence that Isaac Newton and Albert Einstein had Asperger's:

http://www.nowpublic.com/health/asperge ... brilliance

To do this effectively, you probably have to start with convincing yourself that Asperger's is a positive - or at least it is a difference that is not a disability. The bit about Newton and Einstein may help.

My own story is that, looking back, half the students at MIT - probably the top science and engineering school in the country - probably had undiagnosed Asperger's. That's probably why I liked it there so much. I think it's very common among top notch technical people.

The "do we tell?" question has been addressed often here and there are generally two points that stand out:

1) Know you child.

2) For most kids, you tell. They already know they are different, and having the real reason is better than the one they will inevitably dream up for themselves. Simple language along the lines of "your brain works different" is fine.

Whether or not AS becomes a crux depends on if you, as the parent, allow it to. I say to my son often that I know he has difficulties, but if I am asking him to do something, it is because I sincerely believe he can succeed with it. There isn't a child in the world who isn't going to look for the easy way out at times, but my NT daughter has just as many resources for that as my AS son, and there isn't much difference in how we handle it. We nudge and maybe push, but never force. We have told them that we want them to know the joy of meeting a challenge head on and conquering it, and they have both had that experience now often enough that we can refer back to the successes when things are getting tough. Yes, sometimes we pull out because we come to see it really is too much, and for those times my kids know there is no shame in having tried and discovered it just wasn't in you: at least you tried.

Good luck figuring it out with your son. Every family takes a slightly different path, because every family is unique.

My son was diagnosed last year when he was 7, and I told him a few months later because it came up in conversation - I think he was asking about the assessment process. I didn't make a big deal about it, but if he raised the subject we talked about it.

Jat recommended Asperger's, the Universe and Everything to me recently and I got it for my son, who has also enjoyed reading it. I read some of it aloud to him, and we talked about it as I read it. Now it's in his bedroom and he's reading it himself at night when he's in his room and wide awake!

I have always said to my son that people are all different and that we all have value and should respect and care for each other. In relation to Asperger's I've told him that Hans Asperger was a doctor who worked with children and he realised that some children were very similar to each other in certain ways so a "group" was identified and people who are in that group have what we now call Asperger's Syndrome.

I'm aware that my son could use the diagnosis as an "out" and that is something I am alert to. I think the key to all of this is to keep talking with your child, and be honest about everything. I say to my son that I know that he finds some things really hard, but that he is smart and that what he can do is work out his own individual way of doing these things in a way that works for him and those around him.

It may be different for other parents and kids - but my daughter has always been well aware of her AS. She was diagnosed when she was three, she is now 13.

Ten years ago I didn't find support groups or even have internet to connect with people who had a child with AS. While there were autism groups - my daughter really didn't fit into that catagory. While the doctors called her 'autistic' and gave me all of the sad faced news about her aalllllllways being like 'this', she was not like the children in the autism groups.

I spent a lot of time at the library researching AS - no other child at her school had even been diagnosed with it, though the school did consider her a 'special needs' student. In all honesty - I never told the school she even had AS until 2 years ago. I was worried that they'd classify her as a student that would never have the capacity to function like the 'normal' kids.

Anyway - Steph always knew she was different - we confirmed it for her. We explained it to her as being different because her brain is wired differently than other kids. We never told her she was 'disabled' and we certainly didn't ever ever ever let her think she was not capable of learning as well or better than any other child. She always had her own interests, was like a very tactless little old lady and she had (an still does at times) a very difficult time relating to her peers. We told her that she just 'marched to the beat of her own drummer' and she had a knack for seeing the big picture rather than focusing in on some small portion of a problem.

She couldn't tie her shoes or tell time until she was in 4th grade. She is just now getting to the point where she understands money. But she is now in regular classes, on the honor roll (she is one of the top five GPA's in her class), she plays a mean violin and her art has been exhibited at galleries.

I know that her knowledge of her AS has helped her. She understands herself better than anyone else. And knowing who and what she is has given her the power to determine her own course in life. It has also given her the confidence to realize that she is different and some people just don't 'get her' - but that's not her fault or her problem - it's theirs.

The reason her Dad and I never hid her AS from her was because, in all of the research I'd done, kids who were not diagnosed or told they had AS were more likely to be depressed and there was a suicide rate in AS teens that was generally higher than 'normal' teens. The depression stemmed from knowing they were different - and treated differently - but not knowing why. They had no control and didn't understand why they felt and thought and acted different than other kids. They were isolated not only from their peers, but many times from their parents who just thought they had a sullen, dramatic teenager. They are also isolated from themselves - how can they change or have some control in their lives if they don't understand why things are different for them?

It's ultimately your decision to make - when or if you tell them - but knowledge is power and a kid who is going to feel 'mixed up' at times really needs that power to carry on and sometimes just to survive.

When I was 8, my parents gave me Kenneth Hall's book and by the time I'd finished the first chapter, I just knew I had AS.

My son is your son's age and will be going into 6th grade next year (boo...one of the youngest in his class).

He does not have a dx of AS, but rather ADHD and NVLD, which in him presents like mild AS.

He actually read a book in school and one of the characters had autism. He very pointedly said to me "Mom, do I have autism?"

My answer to him was "do you think you have autism?" And said "Maybe. Sometimes." And then we had a conversation about how his brain works differently and it makes somethings easier for him and somethings harder. I gave him specific examples of each and then reminded him that there is nothing wrong with being weird. Yes. I told him that. I desensitized my kids to that word long ago because I knew it would be used to describe them both. All 3 of us are weird and we are quite OK with that and would not choose to be otherwise.

I did not tell him his official "letters" (ADHD, NVLD, SPD) as I do not know if it is necessary for him at this point.

He has tried to use it as an excuse. "My brain works differently! I can't!" To which my usual response is, "yes, your brain works differently, but it still works. Let's figure out how to do it." Unless it is something that he truly can't do, of course.

My daughter is 6. I do not think she has realized that she is different yet, although I think she is starting to notice that other kids do not have bouts of selective mutism and that other kids seem to like each other more than they like her. She is not an outcast, but at the last birthday party we went to, it was clear everyone else had a BFF. The other girls were nice to her, but she does not have a BFF. I do not think I will tell her until she asks.

It's a very hard thing. And the funny thing is, when my kids were little, I was a very strong advocate for "Tell Them! Proclaim it loudly!" As if it was a simple matter. LOL! How many times we say stupid things before we have gotten to the place in our lives to understand how things are rarely that simple.

Good luck.