How/when do you tell others?
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| Sun, 01-29-2006 - 12:43pm |
I have been wondering how to handle this particular question. DS, Ethan is 6, and while he hasn't been diagnosed yet, it seems pretty certain he has Aspergers. He is definitely high functioning, which leads to my question. He is in kindergarten and is making friends, being invited to playdates/parties, etc. I am torn about how to handle this. Most parents have only seen /interacted with Ethan in a very limited way in class and so have no idea that there is an issue. But if he spends much time with them, they will start to realize that his conversation is often off topic. This is pretty much the main concern, since he does play very well with others, shares etc. But I know the first time they ask him a question and he gives an "ethan answer" they will be confused. Should I tell them ahead of time that this might happen? How much should I explain, especially since we don't have an official diagnosis yet (two weeks to go) We have several of these things coming up and I don't know what to do. I have fears that I will tell parents, parents will say something to their kids and suddenly the kids will treat/view Ethan differently. On the other hand, some of the kids have already started asking their parents why Ethan talks about things they don't understand. How have you handled this situation?
TIA!
Debbi

Hi Debbi,
I've been wondering about this myself lately.
If that is the most noticeable issue, I would just keep it light, with "Oh, that's our Ethan...he's famous for rambling on and on." or something along those lines. Later, if you form a close relationship with one or two children, you might tell those parents. I would probably tend not to say anything in a group setting.
Sometimes,I also tend to intervene, with something like, "Ethan, you didn't answer Patti's question.....do you like swimming or skiing?" (rephrase and shorten the ? if needed).When you intervene like this, it makes it clear (to most) that is an issue you are working on.
Chrissy
I agree with Chrissy. Actually I just answered this on another board too, lol. It is coming up.
First of all, 6? He is most likely kindie or 1st grade? Honest, lots of those kids do wierd things like that. It isn't going to stick out that awful much. When are children have differences we tend to be more sensitive to things like that. The other day I was talking to my SIL who's son is classically autistic. He is playing basketball and she was bummed that he never touched the ball during the game. I told her, actually neither did my typical 2 kids in the same age group, lol. Actually there are lots of kids who don't and if you watch all the other kids, many very typical kids have thier own quirks. We are just so overly sensitive sometimes.
That being said I am open with the kids diagnosis. If the situation or conversation comes up or there is a need to tell then I always do. I don't want my kids to be embarrassed about who they are or to feel that I am. So I treat it like I would say diabetes, or being adopted. I don't automatically go up and say "hi, my kid is autistic", but if the situation warrants it or the conversation comes up I dont hide from it either. So if a parent asked me "Why does he talk like that?", I would say "Be cause he is high functioning autistic and he is still learning how to communicate effectively"
However, if ever you are leaving your child with someone else and thier autism may lead to a safety issue in any regard then you definitely have to tell.
Some examples are if your child is a wanderer or runner, if they don't follow directions effectively, if they don't have good safety skills, if they are prone to difficult behaviors or meltdowns. It wouldn't be fair to your child or the other parent in those situations not to inform them.
Typically for any new invites, I go with my child the first couple times to feel the other parent out before I let my kids stay on thier own. For my kids it is a safety issue and always has been so any parent that has my kids on thier own is informed about thier AS.
The only exception to that is now that Cait is in middle school she goes to Youth Group and she is old enough to self advocate. I have talked to her about whether or not she wants the leaders to know about her AS. She doesn't yet, however, she has no problem telling her friends. We have agreed that if she starts having a hard time at youth group and her AS becomes an issue then mom will talk to the leaders, but so far she is doing fine. They don't push her to do anything she doens't want to do and they are very watchful of all the kids because they are middleschoolers and need extra supervision by nature, lol.
She is also in the 6th grade, very versed in AS and what it means to her and doesn't have significant behavioral challenges. When she was 4,5,6 I definitely said something. In fact, one friend laughs because for a bit I tried to get away with "she has a problem with her ears and you have to get her attention before you talk to her", lol. Also warning them that she may wander off on them. I didn't get away with that for long. Before too long I had to tell them about the autism. The good friends stuck around anyway and I really have no use for the ones that didn't.
Renee
I agree with all previous posters. We are not hiding Malcolm's dx, although I don't overuse it either. We are still working up to explaining everything to him about dx, I can sense we are getting closer (age 8) but not quite there yet. We are still discussing with him in terms of his strengths and weaknesses and coping skills and how to work on them, therefore I am not willing to talk too overtly and openly about an area that is still in process within the privacy of our family.
For me, this is also Malcolm's decision when he is grown up --- how much he wants to say about autism or PDD-NOS and I am careful about blindly and unnecessarily removing that autonomy. I am not ashamed of using the word autism, but also find that the misunderstandings about autism in casual situations means to me that I am more interested in sharing information that will truly help THE SITUATION. I now find that "sensory issues" help with sports settings, "get his attention and make sure he understands instructions" helps with other after school situations. But again, if the situation would really best be helped by (quietly) saying "high-functioning autism" or "autistic spectrum", I will say that.
The difficulty here is often Malcolm does NOT seem too weird most of the time. He is able to hold conversations, enjoy events, hang with his friends. More and more, he doesn't need explaining, just occasionally. And even then, using "autism" often doesn't truly produce understanding.
But, like Renee, I would never leave him in the care of people who do not understand him or where he may need some help. Fortunately, he has lots of friends whose parents now know him very well. Hence, he does day-long playdates, trips to beach, overnights, now when he's really mad at me, he threatens to move in with one of his 3 best friends and last night started looking for cab money (in my purse LOL) to move on out!
Sara
ilovemalcolm
Teresa
I don't tell parents of playmates. Most adults seem to find ds's speech endearing or interesting more so than odd or concerning.
Samantha