ASD Moms: When did you tell your kiddo?

CCinLove · April 2014

And actually, this question really applies to any kid with a neurological/behavioral/mental issue...anything that isn't immediately obvious. Did you wait for them to ask questions, or did you sit them down and explain how they are different? How did you know they were ready?

My son is 5 (high functioning), and I'm wondering when I should expect to have this conversation. It hasn't really come up since his differences are pretty subtle to most people. He's received speech therapy since he was 1.5, but we've never even explained that to him. He just knows that on Tuesday's he goes to Mindy's office to play. I can see him being confused about why he needs speech therapy and saying something like "But why? I already know how to talk."

The only indication that I've ever had that he's aware that he's different from other kids was during the first few months of preschool this year he insisted that he didn't want to go to school because it was filled with kids, and he's an Angry Bird (his favorite computer game).

MirandaHobbes · April 2014

I asked DS' therapists what they thought would be the most effective way to explain it to him. At age 5, they said the term "autism" wasn't as important as just talking with him about how his brain works differently and how he needs extra help with different things but is also better at other things. I've tried on several occasions to talk to him but it hasn't really sunk in. We have this book "Adam has autism" or something like that- Adam is 5 and has autism, he's "awesome" but also struggles. It's a really sucky book actually and DS totally saw through it. He asked- "why is he so awesome if he is scared of rain? I love rain." At any rate, I think it is important to just keep it in the conversation. DS is 6 and in a kindy class with 5 other ASD kids who get pulled out for services. He knows that there are basically two classes but he can't seem to breakthrough that he is "different" in any meaningful way- it just is what it is. We'll keep talking with him on an as-needed basis. Now, it's going to be very interesting- later this week we have our annual developmental pedi appointment and DS is definitely old enough to understand when I'm talking to the doctor about issues he is having. I've warned him we're going to talk about his toe-walking, fingers in the mouth, and other behavior that we're trying to get him to be more self-aware of. I'm looking forward to seeing how the doctor approaches him about it.

kcisthebombdotcom · April 2014

The link I posted below gives a really good way to explain autism. As for us it's a talked about conversation here. My four year old is bright and curious and started asking questions--why his sister couldn't come to his school, etc. We always keep a positive spin on it and mention while DDs brain works a little differently it gives her special gifts too like knowing how to read.

d.f · April 2014

My DS (PDD-NOS) was Dx'ed right before his 4th birthday. We started the conversations as soon as we had processed the info. We haven't done a big sit down we've just included it in conversation. I'm not sure how much he "gets it" now at 5.5 but we plan on continuing to have the convos forever. We just keep it pretty neutral so that it just is.

CCinLove · April 2014

Thanks for the feedback! I think I'll start broaching the topic with him this summer before he starts K. He obviously feels different on some level, so I think it's time to validate that. I think I'll skip the Adam books, LOL.

@auntie, he doesn't generally profess to be an Angry Bird. He's usually pretty adamant that he's a boy when I try to get him to role play (example from tonight: he climbed into the crib, so I asked if he was a baby...he was offended by the suggestion because he's a BOY!). I assumed that he just said that because he couldn't identify why he was different from all of the other kids. Now he just normally says that he's a little bit shy, and doesn't want them to look at him when he comes into the room.

light52 · April 2014

My son is 8 and has ASD/ADHD. We haven't mentioned it to him at all but would be happy to if he asked. He does know he is going to speech and OT and what the goals are but he hasn't associated it with him being different. He is the type of kid that would probably use his disability as an excuse to not work hard. However, his 4 year old brother has started noticing differences and is asking questions. We haven't told him the word autism but we have explained that his brother's brain doesn't work the same as other kids. We haven't purposely kept any information from our kids but we rather wait until they ask or seem like they need an explanation. My 4 year old is NT but is still in speech so my oldest doesn't really notice that this is different than any other kid out there. ST is a way of life in our house.

light52 · April 2014

I hadn't thought about the fact he would be in IEP meetings with us. He is starting to notice a few differences between him and his friends but not a lot since his two best beds are ADHD also. We will discuss possibly telling him and I definitely won't let him get away with using it as an excuse at home.

lemen99 · April 2014

I don't know

My son is 5.5 and has no idea and I don't think he would understand yet. I went to hear a speaker and she said a lot of kids are ready around age 8.

lite-bright · April 2014

My DD1 is 6 and I've already had a few conversations with her about this. I've used the word autism, explained that her brain works differently, some things are harder for her than for other kids, etc.

It's hard to tell how much she absorbs. I don't think, for instance, that she connects herself to things like the colorful puzzle pieces with stuff about autism on them in the hallways of her school right now. She knows that she goes to Dr. Jen's office, but I don't think she really associates it with being "different", it's just something she does. She's had therapists as long as she's been in school, after all.

So it's not been like a huge reveal, or something that has helped her understand herself. At least not at this point. I think that understanding will come over time, and I don't want there to be a big reveal anyway, which is why I started broaching the topic so early.

I don't think she even thinks enough about it that if I asked her to describe herself she'd include autistic. I mean, she'd probably say that she knows she has ASD if I asked her, but the implications are kind of lost on her at this point.

MirandaHobbes · April 2014

lite-bright said:
It's hard to tell how much she absorbs. I don't think, for instance, that she connects herself to things like the colorful puzzle pieces with stuff about autism on them in the hallways of her school right now. She knows that she goes to Dr. Jen's office, but I don't think she really associates it with being "different", it's just something she does. She's had therapists as long as she's been in school, after all.

We're in the same boat. I'm hoping by 8 he'll understand more. We had our annual dev. pedi appt and on the way there I tried to talk to him about it again. But he is still adament that there was nothing wrong with him, and the things that I told him he had a hard time with he didn't agree with. For example, I said he has a hard time playing with other kids sometimes. He was flummoxed- he disagreed. I explain how other kids aren't as fixated on numbers and time as he is, and he couldn't grasp that- and even said, "who cares?" I tried to point out that he had cried for 10 minutes that very morning because I had gotten out of bed a few minutes earlier than usual and this upset him- he still can't grasp that this type of behavior is inappropriate. In fact, he responded "Oh, that, that was just nothing. I wasn't that upset." I mentioned the positives, like he's smart at math and reading, and he happily agreed and even said he must not have anything wrong with him because he's so smart. This one with his ego I tell ya.

So, it's a process! It sounds like your DD is further along with her understanding.

I wanted our pedi to try to involve DS in the convo but he was all business trying to cram a lot of info into a short appt. span. DS just sortof tuned out and looked at a book.

roshybride · April 2014

We told the kids about it a couple weeks ago when we were getting ready for a team meeting. We wanted Matthias to know what was going on and we wanted Ezra to understand why people were coming to see Matthias. We used basics like your brain works differently than other kids and sometimes that makes some things difficult, like example, example, example. So to help with those situations, some people are going to come to our house to play sometimes. We'll tell him more as things come up.

macchiatto · April 2014

I'm glad you asked this; this is a really helpful thread with lots of good food for thought, some things I wouldn't have thought of. My son doesn't have an ASD Dx at this point but he's got a variety of issues (hypotonia, sensory issues, gross and fine motor delays, social skills delays) and is currently down to just two therapies (EI--which he qualified to keep till he turns 6--and private OT) but he sees a devel pedi, neuro, etc., as well. He and his twin have both made some interesting comments at times about his different abilities or about what the therapists are doing with him. We've talked about having different strengths and needing extra help with certain things (and some things "taking practice," which his PT advised a while back) but haven't explained much beyond that yet.

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