Tell your kids! They are never too young to understand.
Our boys are 6 & 4, with the oldest being PDD-NOS. About a year ago, Cole escaped from our backyard fence and vanished for a couple moments. We live on a golf course with ponds and on a very busy street to boot - I was frantic.
Will skip all the drama, but suffice it to say, that after I caught Cole at the pond's edge and did the appropriate explaining/disciplining, I knew we all had to have a talk. I sat both boys down and asked them to try to listen.
I said, Boys - you know how Cole sometimes has trouble paying attention? How he doesn't come when Mommy calls him? That's because Cole is autistic. Can you say that word? Cole is autistic, but not too bad...just a little bit.
Cole is very smart and he loves us very much - isn't that right, Cole? But being autistic makes it really hard to pay attention. Like, some people are really good at singing and others aren't? Well, people with autism have trouble paying attention. Sometimes that makes it easier to get into trouble. That's why he got in trouble for going down to the pond alone. You guys know that is dangerous, but Cole - you weren't paying attention to the rules.
Anyway, my little one - Jack - who had JUST turned 3, had some questions for me and we talked a bit more. And finally, Jack said "don't worry Mom. I can be the big brother, too. I'll help take care of you, Cole!" Cole turned, hugged him, and said "I love you, Jack!" That's when I started to cry...but for once, it was out of happiness.
I told them they were the best brothers in the whole world, because that's what brothers do - they help take care of each other.
Anyway, now and then, Jack will bring up the autism thing but not with any negative aspect. He knows Cole likes to "pat" things when he's tired or upset, so he will go get a soft ball for his big brother when he sees that he needs it. If Cole acts oddly in front of Jack's friends, he says " that's okay - Cole's just a little bit autistic. Not bad, just a little bit". The other kids are now more accepting of Cole because a 3 year old told them its not a biggie.
That's it for us. Hope you find whatever is the right choice for your family!
LeAnneC - what a great way to handle it! And what a terrific brother Jack is!
How and what you tell him is important, but my opinion is tell him. I take my cues on how to handle telling my children about their conditions from my mother
I have four children that are all "differently wired than the average bear." My eldest daughter is severely dyslexic, my middle daughter was recently found to be Aspie, my youngest is ADHD and possibly bi-polar, and my son is autistic. Before we knew what the problem was with my eldest, she felt herself to be stupid, not able to learn, and worthless compared to her peers, no matter what I told her about herself. The diagnosis and subsequent understanding of it made a world of difference for her, as did a very dedicated particular team of teachers who worked hard to figure out how she could learn and helped her to find that for herself. My children are told that their individual wiring is not an excuse for bad behavior and/or not trying (and that's constantly reinforced), but it does help them understand and learn to self-regulate. Over the years, because my children know the basics of what makes them unique, they are learning to advocate for themselves - to request necessary space to regroup, for learning something in a different manner - ultimately for getting what they need as adults (I hope) in order to be successful. The knowledge of their individual "differentness" provides them the tools they need to do that.
Not only that, but it allows them to advocate for each other...I found that out this week. My 15 year-old is preparing a speech she's been asked to give as the sibling of an autistic child at the kickoff luncheon for the 2007 Walk NOW for Autism Research here in North Texas, and she asked me to listen to it. Her opening statement..."I know what it is like to be different. I know the struggles, and I know the successes." Her ending statement..."I will always love and fight for him - differently wired doesn't matter, he will always be my brother."
My 9 year old son is high functioning, with PDD. My 7 year old son is really beginning to have a hard time coping with it. He gets frustrated that his brother won't always "play" with him, does not always respond appropriately, etc. We have an 11 year old daughter, and she just seemed to "get it" without us ever having a "talk" - although we have discussed it. She has a different temperment, and has always taken on the care-taker role of the older sister. My younger son just wants a "regular" brother, as he told me recently. We recently sat down with younger son to explain autism, and got some books from the library to read. We are trying to help him cope and understand his brother better. The books seemed to help, and the discussion came down to his question "does autism take over your whole brain and body?" I said yes, my older son is smart but has an aid in his class to help him. We talked about hand flapping, smelling inappropriate things, getting easily frustrated. So, then my 7 year old says "does BROTHER know he has it?" I said yes, i think so. "Did you tell him?" he says. "No, but I think he knows" I say. "How do you know he knows if you didn't tell him?" I say I just think he does. So, 30 minutes later, older son is whining/fighting with younger son. I ask what's wrong. 9 year old says "BROTHER is saying something is controlling my whole mind and body" So, he does not seem to "know" that he has autism, and has never expressed any concern about not "being" like other kids he knows. He is a very happy kid, somewhat in his own little world, somewhat in ours. The young years of autism were so painful for me. I am starting to finally feel like I have "figured it out" to some extent. We have tackled eating issues, school, walking, talking, etc. Now, I really feel like I am encountering a whole new set of issues, with friends, social awareness, etc. We have always spoken openly in front of the kids about autism, so I am surprised that neither of my boys have ever "picked up" on the conversation, as my daughter did. So, do I tell my beautiful happy boy that he is different, and explain autism to him, or let him live his happy life and hope that, in this instance, he stays unconcerned about how other people respond?I think you should tell him that he has autism, but don't make it sound/seem debilitating. He is the same person today as he was yesterday. He's just a little different from other kids. Don't dwell. When my mom told me about my disorder - I already knew, but not the "textbook" version...if that makes sense to you. I hope it does. I am awful w/ words. He can still be happy and know - unconcerned...just don't dwell on the negatives. Make it more positive - he is hfa. Be careful about what you read or let him read initially too. I am a research nut and when I read about my prob it was scary. Wow, glad I am not the only one struggling with the decision on telling! I went online yesterday at Amazon and looked for books to have my son read and we can discuss. Everything I found was either geared towards the parents, adults, young children with autism or children without autism. Nothing for a pre-teen adolescent! If anyone knows of an age appropriate book, I would love to know!!Great Question !
One I have wondered about for soooo long.....my daughter has Down syndrome and when she was born we decided to not say anyhting to her brothers about it.....just go about business as usual so to speak....well.....that lasted a couple of weeks ! We told them and they absolutely get it......but how to tell her ?
I have spoken to adults with both Down syndrome and ASD and they all will say very matter-of-factly that they have this disability.....they seem to define it in medical conditions.....I have THIS.....it sometimes makes me do.....A,B or C.....and that's it......it isn't WHO they are.....just WHAT they have.....
We have a neigbor ( about 11 or 12) with special needs.....he was commenting on my daughter one day and questioning why she did this or that......my son .....took it as "teasing".....and he is VERY protective of his sister......said to the neigbor....something to the effect of " you should be nicer to her and understand that she has special needs, just like you do".....well.......that did NOT go over well with the neigbor.....very upsetting all the way around.....
But I think if you approach it as a medical diagnosis and give them info as needed it will just become a part of them......just like the big sex talk etc....keep it simple.....details can be filled in later.....don't need all info right off the bat.....
We have always been very open about it in our family. Eveyone knows and has since the diagnosis. We have autism awareness bumper stickers t-shirts for everyone, bracelets you name it. We are invovled in the Autism Society and do the walk every year. I guess I never thought about not telling him. I have always been an open book now and probably forever. I don't want Sarah to feel it is shameful in any way so we openly talk about her strengths and things we are working on.. she will use the diagnoses sometimes to get out of things but I dont feel she thinks she is less than a wonderful smart beautiful girl. I dont want her to grow up and know she was different and no one told her. I feel it allows us to openly talk about whatever is bothering her and it is okay. I tell her she is very smart and does many things other kids cant and some things she has trouble with but with help there is no reason she can't do it. This satisifies her and I dont feel we are hiding "autism" label from her...she had met others like her and some are higher functioning and some are lower. Knowledge is power no matter what age.open book here too....Jeremy has known and seems to understand....
That memory is a gift!!!
Gail
These are some wonderful thoughts and stories!!!! Thank you for sharing folks!!!! Both my NT son and his ASD brother had a few questions when we had the discussion too! Like others have mentioned I explained that ALL people do lots of different things in a different manner (such as dancing, singing, etc.) I too was aprehensive about telling my son that he has autism. I guess it was just because I wasn't quite sure how to go about explaining it to him and his brother. I'm so happy I did though. I believe that keeping a secret can sometimes give our children the idea that what we have to "hide" is something to be ashamed of. I'm VERY proud of my son with autism!!!!!Well, it is not about PDD-NOS but there is a book called "This is[When to tell]
At an autism seminar yesterday here in Norway, we heard that age 7-8 is a good age to teach children their diagnosis. Our son is 8-1/2, so we better get on the ball!
You definitely don't want to wait till nearer puberty, when kids don't want to be different in any way and have a harder time accepting the diagnosis. But in my opinion, it's okay for parents to give themselves time to adjust and learn about autism after the diagnosis is first made. There's a lot to deal with when you're "new to autism" so nobody should feel guilty if they need to wait a bit before sharing the diagnosis with their child.
[What I plan to do]
One thing that makes it harder for us it that our son doesn't ask questions, so we don't have any natural "teachable moments". He is only just beginning to be aware of his differences.
What I plan to do is write a short book on it for him. We talk about DNA-codes a lot, and I've decided to say autism is about having "self-codes" -- needing to relax by yourself, figuring things out yourself, inventing things yourself, imagining things yourself, etc. These "self-codes" are great to have, and I plan on including relevant stories about him that he's proud of.
However, I also plan on pointing out that some people with a lot of self-codes struggle with some things and need extra help, and also give him examples of those from his own daily life.
I'll probably also give some examples of historic people that had autistic traits, like Albert Einstein, Henry Ford, Alexander Bell, and Thomas Edison. Modern examples are Bill Gates and Shatoshi Tijjaru (creator of Pokemon).
[Resources]
The book "Aspergers: What Does It Mean To Me?" by Catherine Faherty is a popular tool for teaching about an Aspergers or high functioning autism diagnosis. 19 Amazon reviewers gave it 5 stars, and it has been translated into several languages.
Here is a website with links to 10 different websites with autism information for kids (siblings, classmates, friends, and of course autistic children themselves).
http://www.angelfire.com/pa5/as/talkingtokids.html
Here are two lists of autism books for kids. Some may be available at your local library:
http://www.bellaonline.com/subjects/9393.asp
http://www.autism-resources.com/books-children.html
Good luck with everything!
P.S. While you're waiting for replies to tick in, you might want to check out the topic from mid-February "How to explain to your child."
For kids aged 4 - 8, there's a great book called "Zink the Zebra" - a story about a little zebra who was born with spots instead of stripes. This is not specifically about autism - just embracing differences (or disabilities). The book was actually written by/about a young girl who had cancer and who saw herself as being excluded by others. The story line is:
Zink has a brother who is typical, and there's a scene where the other zebras don't want to play with Zink because he is spotted. Zink's brother stands up for him & teaches the others why zebras can be different & wonderful at the same time. Very nice story!
My son's elementary school spends one week a year celebrating Zink. There are white streamers with black dots hanging down from all the hallway ceilings. They set up a stage with big, cutout zebras & of course, little Zink. A local children's songwriter comes in and does mini-concerts all day on this stage & there's a fun program the kids see about differences. Each kid is then given a cute, laminated Zink bookmark to take home. A 2 page flyer goes home to the parents explaining the story and the program, and asks each parent to have his/her child do one official act of caring that week in honor of Zink.
Makes me tear up even writing about it! We love Zink.