When should I tell my sons that they are autistic?

[Nik's Mom]

Hi all,
I have 2 sons age 9 and 6. They are high functioning. Lately, I've been thinking about discussing autism with our 9 year old. Do you think this is too young? How would I even go about telling him? Has anyone ever done this?

 

[Luv Bunnies]

My 13 year old son has Asperger's and is also very high-functioning. I can't remember a time when he didn't know he was "special." He may not have known that he was autistic, but he definitely knew he was doing things the other kids in school didn't do (go to speech and OT sessions, for example). We never worried about using the word "autism" in front of him but we never actually sat him down to discuss it. He learned about it as he grew and we answered his questions as they came up. He's a very bright guy and as he got older, he started asking more questions. And as autism has been in the news more frequently, he's been hearing more about it. Probably about 2 years ago, he said, "I'm autistic, right?" I said, "Yes, you have a form of autism." We discussed all of the things that make him so great - his astounding memory for details, his reading and spelling skills and his knowledge about trains. Being an Asperger guy has helped him develop all of these great skills.

Sometimes when things don't go right, he says he wishes he could just reach into his head and pull the Asperger's out. His psychologist has also helped him with ways to look at it and deal with it.

We have embraced my son's Asperger's as part of who he is. I will talk to anyone about it, including him. If you think your son is old enough to understand, I would discuss it with him.

 

[1stluvispooh]

My DD is 8 and like Luv Bunnies said I am not planning on sitter her down and telling her she has autism. I didn't have a big talk with her older brother about it either. Just when he couldn't understand why she was doing what she was doing did I bring it up, answered any questions. Now at the begging of the school year while we were waiting at the bus out of the blue he told one of the kids from down the street. "My sister is 1 of the 1 out of 150 kids each year diagnosed with autism" I was shocked. It hadn't been brought up lately. I know she knows she is different and yes sometimes her brother will say to her "I wish you didn't have autism" but outside of that if she asks we will answer.

 

[ireland_nicole]

I just went to a seminar for parents about when to tell kids about their "disabilities; They actually said to start around 5. We waited a bit longer, but kids know that they are "different" and overhear a lot of conversations, pretty darn early. I was very surprised at how much DD knew when we did start using the "autism" word. She knew that other people seemed to think things were important that just weren't to her, etc. We tell her that her brain works in a cool way that is different from a lot of people. She also takes meds; she knows some are to prevent seizures, some are to help her be calm and have self control, some are to help her digest food, etc. She knows why she takes everything, why she has so many doctors, why she does so many therapies. In fact, her next ARD meeting is in 2 weeks, and she will be attending (at least part of it.) She is starting to self advocate, which will be as useful a skill as learning to make a bed or do laundry. We don't allow her to use her diagnoses as an excuse, but to learn to adapt, to appreciate the things that she is good at, and to discover how to learn in a way that works for her. Our son is 6 and although we haven't told him everything, we have definitely shared with him what his Diagnoses are called, etc.

 

[BeckyScott]

Justin (8) knows he has autism, but it doesn't come up in conversation very often. He just picked up on it from hearing us use the word.

One time he did try to use it as an excuse, in a situation where he totally knew better, and we busted him on it.

I don't know if he has a full grasp of exactly what all "autism" means, but he knows whatever it is, he has it.

It was actually harder to explain it to his brother, who is older and was having many of the sibling issues of why his brother acted that way, or why these adults kept showing up at our house to "play" with his brother and not him. He's getting the idea now. Honestly, it just doesn't come up as a topic very often, we just do our thing and don't make a big deal about it.

 

[Nik's Mom]

Thanks for sharing your stories. I was talking to my sons teachers and school psychologist. They said that some of the kids in his class realize that ds has some kind of disability. They can tell because some the kids try to be more patient with ds and pay extra attention to help him out at times. I thought that maybe one of the kids might say something around him.

I'm thinking that I should just start by making a story book about a child with autism. This will at least get the conversation going. I want my ds's to both know that they are unique and there is nothing wrong with that.

 

[ireland_nicole]

There are some excellent books already out there, as well. Some for kids w/ Austism/Aspergers (DD loves the one All cats have Aspergers- at least I think that's the title) and some for classmates. I have a couple of friends who come into the classroom every year and while their child is out of the classroom for ST or something, read an age appropriate book about being a friend to a kid who has autism and then answer any questions. Your school psychologist can hopefully give you some suggestions.

I strongly recommend for the classroom;
Since We're Friends; an Autism Picture book by Celeste Shally; really good for preschool through early primary (grade 3 or so)

I just did a quick search on www.barnesandnoble.com and had 135 matches when I used keyword autism and searched children's books.

 

[bookwormde]

I also think that is important to let our children know the challenges they will face and the exceptional abilities that come along with being on the Autism spectrum. It is important for them to know that they are not better or worse than Neurotypicals , but just have a mind that works somewhat differently which creates challenges with living in a social structure that was not designed for them but also allows for them to be a part of a group which has a far greater positive impact on the world than the average person..

bookwormde

 

[NJMomma]

It came up with us when my son asked me (about 1 1/2 maybe 2 years ago) why he was different, why it was so hard for him to pay attention, why he flapped and other kids didn't. I was carefully in how I phrased my explanations - I didn't want him to get the idea there was something "wrong" with him, just different. He still wants to know why no one else in the family has autism. He tries to use it as excuse from time to time, but we don't let him get away with it

 

[ireland_nicole]

I agree; my kids know that they look at the world in a cool, unique way, but that they have to spend time learning the rules of the society they were born into. It doesn't make the way they look at the world wrong, just different. They know that there are some things they do just because it's important to other people. Like "understanding" body language, or a lot of the work we do w/ social scripting. I taught my kids early about salmon, and when things get tough now, I'll start singing like Dory in Nemo, "Just keep swimming, Just keep swimming... and then I'll add in 'Upstream!!''

Just looked at that- you know it's doesn't seem so "odd" when I do it at home, but it sure looks unusual now. Just in case it's useful, I'll keep it in.

I told my daughter that Autism is a "definition" for how her brain works, that it isn't typical, it's unique. And it isn't an excuse, it's an explanation of why some things are easier/harder (depending). I'm starting to share this with my DS too, but there is more developmental delay, so I'm playing it by ear.

 

[Piper]

Several years ago, I took a year off from teaching Pre-K to teach second grade because a former student with ASD had a rough time in first grade and I wanted to help him have a better year if I could. His parents were against telling him he was "different." One day a couple of weeks after school began, he came to me and said, "I need help. I think I am stupid or something. I'm just so lame. I'm not like the other kids."

I asked him why he thought that and one of the things he said was, "Well, I just don't get some things and the other kids say, "What, or you stupid or something!?"

I had just handed back a math test on which he had made 100. I reminded him of this and asked him if he thought "stupid" people made 100 on a math test! He said no. It was almost lunch time and so I spent my lunch time talking with his mother on the phone and got her permission to be honest with him and with the class. I told him that everyone was different that some people's eyes worked differently and they wore glasses. My legs work differently and sometimes I fell. Some people find it easy to play the piano and some people find it difficult. Some people have beautiful singing voices and others sing like a frog! I told him that his brain was wired differently and that he would find some things very easy and others very difficult. Everyone did--but some of the things that were easy for "most" people would be difficult for him and not everyone was patient and understanding. We also talked about the things that were easy for him.

Then the next day, we talked to the rest of the class and he had a great year! The kids who had been wary when they didn't know why he was different, accepted him when they knew there was a reason.

Anyway, the point is that kids know they are different and I personally feel that they have a right to know why. It doesn't give them an "excuse" to behave badly--just a framework to know why they need to work harder at some things that are easy for others.

Off the soapbox.

 

[bookwormde]

Piper

Beautifully said.

bookwormde

 

[Nik's Mom]

Thank you, everyone! You all gave some great suggestions. I think dh need to start introducing the subject to our sons.

 

[ireland_nicole]

Thanks Piper; too bad there's not much chance of you commuting to Austin, we need more people like you in our school!

 

[DisDreaminMom]

What a great topic. I'm so glad I found it. I did check out a video from our public library about autism with four different sections about telling children they were autistic and telling siblings of varying ages about autism. Unfortunately, I just couldn't bring myself to watch it before I had to return it to the library. My DD (8) found it and we did have a great conversation about what makes DS (6) different. She really gets the concept. She said she thinks her cousin's cat has autism.

And how sad to hear her sometimes mutter under her breath "I wish you were just normal and not autistic". It just breaks my heart for both of them. Last year, DS's 1st grade teacher told the class about him when we moved to the school and the other kids were so sweet. As he gets older, I see this as a problem. Kids are just so mean. I guess we'll have to have a talk soon....

 

[Nik's Mom]

I'm still working out a plan to talk to my son. It's a hard thing to talk about. I don't want to hurt him, but I want to be honest with him. KWIM?

 

[koolaidmoms]

My DS is 5 and we haven't started talking about Asperger's yet. What we do talk about quite a bit are special talents with both children. DS is gifted in reading and math.

DD (8) is actually having more trouble with DS's issues than DS. She knows she is talented in writing, painting and music but it is hard when her little brother is reading a grade level above her and doing the same math she is. She also does not understand that sometimes he can not control the perceverative issues. He barked like a dog for Halloween (he was dressed as a dog!). Everyone thought it was cute - not 2 hours cute but it embarrassed her to no end. We have started using ASD and other terms with her to make her understand but ...

Has anyone else had this issue? We've done books and things but are just thinking about getting her involved in a group for siblings of children with ASD.
Maybe that will help.

 

[kaffinito]

Nik's Mom, if you don't make a big deal of of it, then they won't either. Just start mentioning it from time to time in conversation. Things like "I think it's great that you think that way, it's one of the pulses to being ASD" things like that. If you mention it casually, but always with a positive spin, then they won't get the idea that there is something "wrong" with them. This also opens the door for them to aks questions when they are ready to. Don't forget, that it might be a big deal to us, but not a big deal at all to them. When I told my oldest after a big build up, he just looked at me and said "well, duh!"

I also used to use phrases like "boy it must be so boring to have regular kids!" Or my favorite, and the one I use most often when the boys are really having bad days - "Fun with Autism!" This kind of phrasing lets the boys see that they are unique, but also that I wouldn't trade them for anyone else. Good luck!

 

[Nik's Mom]

Nik's Mom, if you don't make a big deal of of it, then they won't either. Just start mentioning it from time to time in conversation. Things like "I think it's great that you think that way, it's one of the pulses to being ASD" things like that. If you mention it casually, but always with a positive spin, then they won't get the idea that there is something "wrong" with them. This also opens the door for them to aks questions when they are ready to. Don't forget, that it might be a big deal to us, but not a big deal at all to them. When I told my oldest after a big build up, he just looked at me and said "well, duh!"

I also used to use phrases like "boy it must be so boring to have regular kids!" Or my favorite, and the one I use most often when the boys are really having bad days - "Fun with Autism!" This kind of phrasing lets the boys see that they are unique, but also that I wouldn't trade them for anyone else. Good luck!

What a lovely way to put it. Thank you for sharing. I do want the boys to know that autism isn't the end of the world. It is a condition that can bel lived with and you can still lead a happy, productive life.

 

[Eeyores Butterfly]

No matter when you tell them, please make sure that they don't think they can use it as an excuse for their behavior. I have a I work with now who basically "chooses" when he wants to be autistic, if that makes sense. He has been taught that autism is a get out of jail free card, and will use it. He actually said to me the other day, "I have autism. That means my brain doesn't make connections and I can't make choices." It's frustrating because I know this kid and I know what he is and isn't capable of. However, he has been taught that if he says the magic word he can do whatever he wants. It's been an ongoing battle to change that attitude.