How to have a discussion about your child's dx?

meghans30

Therapy has been part of Trevor's life since 18 months old. He is a happy, social, inclusive and energetic boy. He knows he has more teachers involved with his day than his peers; he knows he struggles with reading and math a bit more than others and does not like to get in trouble. I have talked to him about how it takes him a bit longer to learn new material and that he can always talk to us or his teachers about things that concern him. I have never mentioned autism to him. I have told him he has trouble focusing and this is the reason he chews gum and gets frequent breaks. I'm not sure how to talk to him abut his social deficits.  We are coming to the point where he wants to have sleepovers and such. We do our best to foster relationships and include him in activities.

I think he senses he is a bit different, but is not frustrated or deterred by these differences (I'm sure this will change as he gets older). I'd like to keep the conversation age appropriate and as positive as I can.   How many of you have had the conversation? How did you approach it?

 

meghans30

I guess I want to know how can I have the conversation without crushing his positive outlook.  

lite-bright

My DD1 is younger, but I basically started by asking her whether she felt like she was different from other kids. (I knew the answer to this was probably yes.) Whether she felt like it was hard to understand other people sometimes (yes), or hard to express what she thinks or feels (yes). 

So then I told her that she has something called autism, and it can make those things harder for her -- not that she can't do them, but it can make things confusing and that it's something that she has to work on; and that she has teachers, therapists and us to help her. That it's okay to be different and feel different, she still has lots of things in common with other kids and some things are harder for them than for her; and if she ever has questions about it, she can ask me. 

She didn't seem particularly interested for very long, was very matter-of-fact about it, and it's hard to tell how much she absorbed. I'm kind of hoping that as long as we talk about it every so often, her understanding and my explanations will evolve over time.

I wouldn't think about it as putting negativity on his attitude -- I'd think about it as, presenting him an explanation for why he has to work harder or finds certain things more challenging while it seems to come easily to the kids around him. Not as an excuse, but an explanation. I dunno, I don't know your son, but if his deficits are clear to those around him, I have to wonder how much he recognizes that and might wonder why. My DD1 is pretty young and although she doesn't express it much, if I ask her about it, like I said, she does have some sense of the differences between her and other kids. 

lite-bright

I was thinking more about this last night, and I just wanted to add that I think a couple of things are important as part of the conversation, from my perspective.

One is that DD1 understands that she isn't alone or unsupported in trying to grapple with the things that are hard for her. That the reasons she has therapists, and extra attention at school, and why we do certain things at home, are to help her and even when those things are frustrating, it's to help her learn. That when I try to explain something, or do things a particular way that she doesn't like, it's not just blowing hot air or being contrary. It's because I love her and want to help her. Eventually I hope she'll understand more of that. 

The other is that I don't want her to be left wondering if she's stupid, or bad, or not nice, or whatever else, and that's why social things are really hard for her. I feel like that's part of laying the foundation for helping her have a view of herself that is neither inflated nor negative. I want her to know the reason and help her understand it, rather than have to come up with one on her own or draw one from the people around her, who don't know her situation and could call her things like annoying, dumb, etc. Autism is part of her that means she'll probably always have to work harder at certain things than other people, but it doesn't have to define her. 

MirandaHobbes

lite-bright:

I was thinking more about this last night, and I just wanted to add that I think a couple of things are important as part of the conversation, from my perspective.

One is that DD1 understands that she isn't alone or unsupported in trying to grapple with the things that are hard for her. That the reasons she has therapists, and extra attention at school, and why we do certain things at home, are to help her and even when those things are frustrating, it's to help her learn. That when I try to explain something, or do things a particular way that she doesn't like, it's not just blowing hot air or being contrary. It's because I love her and want to help her. Eventually I hope she'll understand more of that. 

The other is that I don't want her to be left wondering if she's stupid, or bad, or not nice, or whatever else, and that's why social things are really hard for her. I feel like that's part of laying the foundation for helping her have a view of herself that is neither inflated nor negative. I want her to know the reason and help her understand it, rather than have to come up with one on her own or draw one from the people around her, who don't know her situation and could call her things like annoying, dumb, etc. Autism is part of her that means she'll probably always have to work harder at certain things than other people, but it doesn't have to define her. 

This is so well said! I haven't broached the subject with my son because I think he wouldn't understand any of it. But I'm probably wrong. I think I give him far too little credit sometimes. I think deep down I've been hesitant to talk to him about it because I'm afraid he's going to latch onto it and tell everyone he sees that he has autism- and I can totally see him using the excuse "I don't have to play with him, I have autism." I have to start laying the foundation and you've given some great points!

meghans30

-auntie-:

lite-bright:

 

So then I told her that she has something called autism, and it can make those things harder for her -- not that she can't do them, but it can make things confusing and that it's something that she has to work on; and that she has teachers, therapists and us to help her. That it's okay to be different and feel different, she still has lots of things in common with other kids and some things are harder for them than for her; and if she ever has questions about it, she can ask me. 

This is exactly what Dr. Coplan has as a model- an evolving dialog, started early on, that empowers a child with self-knowledge.

Thanks for this!  

meghans30

These responses were very helpful. Thank-you all!