Telling a Child About Autism

Updated on February 24, 2010
K.H. asks from Vienna, VA
15 answers

Hi

My son is 6 and has been diagnosed with 'high functioning Autism' about 18 months ago , we have never actually told him but I am starting to wonder if and when we should? At the moment he is too young to notice that he does things that other kids do not , for example he hops up and down or runs from one end of the room to the other over and over again , often mumbling/talking conversations that have taken place during the day (usually recites what the teacher has said during class). His teacher has said that he does not hop in the classroom because he obviously can't so during class time he flaps his hands infront of his face.

It is going to get to the point soon though that other kids (and my son) notices the things that he does , so should I tell him or just leave it until he asks questions? My hope is that once he realises that he hops or flaps his hands , he will be old enough to control it and not do it anymore?

Anyone else been in this posistion , did you tell your child and what did you say?

Thanks

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So What Happened?

Thank you for all the responses , I agree with many of you and that I don't want to label him , I just needed to hear from other parents in the same situation what you all think or have done. He does not have an aide in the classroom yet , his school is currently going through all the assesments , for pre k & K he was at a private school and although testing was done for a classroom aide he did not qualify , but now that he is in public school and they see him everyday they do think that he needs extra help , so by the end of March we should know what and how much help he will have. His reading/writing is coming along really well but he does struggle with math and his social skills , he attends a social skills group for help with this and we have just started him in an after school group that hopefully will help aswell. He is amazing on the computer though!!

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T.C.

answers from Austin on

My son is 8, and so far we have not shared with him all his "labels". We have let him know that he is ahead at some things(such as science) and behind on other things(such as writing) and needs extra help for them. If he does ask about the labels I will discuss it with him. I'm sure it will come up, because the teachers may talk around him and not realize he's listening. He does have an aide at school that helps him stay on task. He attends an afterschool social skills class. ADHD meds have dramatically decreased his singing, humming, etc. Before that he would have a chewelry necklace to decrease the behaviors. I used to get a lot of kids coming up to me at the school to tell me that my son had hit them. I would simply tell them that he is still learning how to control himself, and I would ask them if he got in trouble for it.

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S.H.

answers from Honolulu on

Does he have an Aide in class with him?

My daughter, when she was in Kindergarten, had a classmate who is Autistic, high functioning. He had an Aide with him in class.

Anyway, the kids didn't really notice anything different with him, except he had an Aide and that he needed help with things. But they "knew" the word Autistic... which to me is not a "naughty" or "bad" word. The kids didn't label him nor treat him differently, and in fact, they were very kind toward him.
My Daughter, would actually be the only child, that would try and make friends with him or talk to him or help him.
She asked me about "Johnny" and what is Autism. I just explained that some kids are just different but we all are, and some kids have special "talents" that not all kids have. But he needs an Aide to help him because he learns differently... but he is a normal boy.

Yes, when appropriate and perhaps when he is older and able to understand... you can talk with him about it.

I have another friend, whose son is borderline Autistic or PPD but they are really not sure. He had some similar traits... though not as pronounced. He is 6. He has an Aide in class. The kids don't make fun of him... he has friends, other kids make friends with him... he is just "different" and a unique boy. The Teacher just says he is normal... and is just a boy who marches to his own drum beat and respects him. Meanwhile, he is sort of savant with reading and bookish things. But... well, his Parents don't exactly tell him with a "label" what he is... but he knows he needs "help" in school and his Aide helps him and he likes it and understands that.

All the best,
Susan

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A.M.

answers from Fresno on

I dont have a child with autism but my nephew does. And if it were me I would tell him this way he knows and can get used to it slowly. Maybe this way he will know that it isnt anything to be ashamed of. With my nephew he jumps and hops all over the place all the time and people notice but Im like "WHAT" when they stare. I just tell people to get over it so what he is different and what! People can be so mean at times and kids to. It makes me mad but we never hide who he is because he is a beautiful person inside and out!!!! I meet a mother on this site named Carly B. she has a child with autism and knows soooo much about it maybe you guys should talk. She has told me so much about autism and has given us alot of hope for my nephew. But to me your son sounds pretty normal compared to alot of little boys because my daughter is 6 to and all of the kids in her class to the same things. Crazy huh. well whatever you decide will be the best for your son your his mom and knows him the best. Lots of love and luck to you all.

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C.H.

answers from Norfolk on

I can truly sympathize with your situation. My son has autism as well and displays the same behavior. He is seven years old but he was diagnosed four years ago. We made the decision when he was first diagnosed to explain it to the other children, friends, and family so they would know what to expect from him and how to pray for him. Since we are trusting God for his full deliverance we have not explained it to him because we want him to learn correct behavior and not use the label of autism as an excuse as to why he cannot act appropriately. Have hope because God has brought my son a long way. Believe it or not when he was three, he was completely non-verbal and in a catatonic state. Now he is considered high functioning, very active (a little too active-lol), able to recite numbers and colors, etc as well as imitate behaviors of those who are around him. Don't enable him, but empower him!! He can do it and God can help!!!

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R.M.

answers from Washington DC on

My son, who is now 21, has sever sensory integration dysfunction and ADHD. When he was in elementary school SID was not well understood and often dismissed as a diagnosis. When we figured out that he had SID and we began occupational therapy, he was so relieved to have a diagnosis - a label. He was so happy to know he was having trouble because his brain worked a little differently - not because he was a bad boy, not because he wasn't trying hard enough, not because he was mean - all things kids and teachers had accused him of. In fact, he was so relieved to know why he was having such a hard time at school he asked his OT to come to his 3rd grade class and explain SID and answer questions.

For him, knowing and understanding his issues really made him feel like he had some power, some control over those issues.

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G.B.

answers from Boise on

have you had him checked for heavy metal poisoning- look online at symptoms-many/most of them overlap with autism.

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J.L.

answers from San Diego on

I would not use the word Autism to your son or to other people. There is a lot of misinformation about Autism, most notably about Autism as a continuum. He has an extraordinary mind, he is different as all children are, and he has challenges, as all children do. Autism sounds scary, like some sort of sentence. Emphasize his strengths, work with his challenges, offer alternatives to behaviors once he recognizes they are necessarily pro-social.

I have friend whose child is on the Autism spectrum and not once has she used the word. She says she is imaginative, creative, expressive, etc. I applaud her because her child is allowed to be who she is with all her idosyncrasies.

I am not suggesting that in any way you are not, I just think what we tell children about themselves has powerful, life-lasting effects.

Best,
Jen

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L.C.

answers from Norfolk on

I would just like to encourage. Here is a trailer to a wonderful film that has been on HBO about a Doctor of science with autism. I hope you will watch this and be reminded, your child is, in the words of Temples mom, "different, not less" Stay encouraged.
I am learnning more about autism and this film gave me a fantastic look at how the autistic mind works.

http://www.youtube.com/watch?v=TG6UI5BmhuA&feature=re...

http://www.youtube.com/watch?v=RHxxOKnH9YE

I was in "Special" classes through most of my school years. I know what it is like to be "Diffrent, but not less."
In light,
L. Cuffee ~Doula

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T.S.

answers from Phoenix on

My son is 6 years old and in kindergarten. He is in the spectrum for Autism with Autistic like tendencies, he also has sensory intergration dysfunction. To be honest with you he takes no notice of other peoples "looks" and does not seem to notice he is any different. From what I understand about the way his mind works, he probably never will. In our situation I dont see that telling him he is different would help him in any way. If there does come a point that he does ask, I will tell him. My daughter also 6 is like his polar opposite, she has ADHD. Now thank goodness for her, she is medicated and can now enjoy her day at school. She asked why she takes a pill and I told her it is to help her relax and listen better. She wanted to know why and I simply told her she has ADHD and that means that she has a lot of extra energy and can have a hard time focusing on what she needs to get done. The medication helps her. She says ok mommy I like to listen and do a good job. That was all she needed. Hope this info helps you...

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T.W.

answers from Chicago on

I disagree wholeheartedly with the poster who said to never use the word. Refusing to use the word continues the stigma that somehow "autism" is a dirty word, and that once our kids know they have it, the ENTIRE world will treat them like they're freaks. This simply isn't true. I know several adults with autism who shout it from the rooftops. My son has autism and Tourette Syndrome. My husband and I also have TS, and I tell everyone I meet exactly why I twitch, why my son twitches. Full disclosure is a good thing, and will only help him get the appropriate services in school and in life. We haven't told our son that he has autism yet simply b/c he has no idea what that means and is not yet cognitive enough to even understand it. I say if you think he'll understand it, tell him. There's nothing wrong with having autism at all. It's a great idea to continue to tell him all the wonderful things about himself. This is just one small part of who he is. Not everything.

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K.B.

answers from Houston on

We have not told our soon to be 8 year old son that he has Asperger's. I have no doubt that at some point we will tell him but I'm not sure when that would be. I'm guessing that there may come a time when he asks us why he does certain things or why he has trouble with certain things and then we will explain that everyone is different but we'll also tell him about his Asperger's. Right now I don't see any benefit to him knowing about it, in the future if I feel that it will help him to understand himself better I will tell him. In our case, while his Asperger's may cause him difficulty socially or cause him to flap his hands it is also what has given him a wonderful mind for math and science and a near photographic memory so I will be sure he understands the positives too.

Good luck,
K.

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K.T.

answers from Minneapolis on

I think it would be good to tell him at a point when he can decide for himself if he wants to share it or not. I think at 6, he may tell people without recognizing the possible consequences of telling...like, some people would automatically treat him differently or see him in a different way when they hear Autism. Yeah it sucks and it would be great if all people in the world did not have prejudice, but that is not the case. You may think "well if they judge him before getting to know him, then those are not the people that need to be around him anyway". But many kids are so cruel for apparently no reason at all. I think he will have a better chance of children accepting him for who he is if they get to know him and be his friend before he tells them. That's just my opinion. It's kind of like this- I have depression and anxiety and therefore may behave differently than "normal" people sometimes. It is part of who I am. But I certainly wouldn't tell people about it when they first meet me. I like to give myself a fighting chance, you know? When I was a teenager I shared that I was hospitalized with depression, and that was passed on from person to person and I instantly become the "weird one" that no one wanted to hang out with. I had one friend still because she was a good person that could see beyond my issues, but even she was teased just for being my friend. This kind of thing even takes place in the office as an adult- in a much more subtle way, of course! So I personally would find a good way to tell him that certain behaviors are frowned upon in public so that he has a chance to correct them himself, and explain that everyone is different and that he is loved and cared for no matter what, but I would wait until he is more mature to tell him the actual diagnosis.

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P.M.

answers from Portland on

With the Asberger's people, both child and adult, and the one autistic boy I know, they are not particularly curious about how other people perceive them. And for the most part, people recognize that "soemthing's different," and cut them slack.

If at some point your son questions someone's annoyance with his behavior, or some apparent difference in his treatment, you might explain in simple, truthful terms. You'll probably know if that time ever arrives.

Blessings to you and your little guy.

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S.H.

answers from Dallas on

Hello, If his behavior is not out of control then there is no need to point out his differences. Before they diagnosised your son, did they check to see if he has a hearing or auditory processing disorder. Sometime when a child has an auditory processing disorder, they get board in school and try to entertain themselves. In crouds where several people are talking, all they hear is mumbling. While their is nothing wrong with having autism, why make your son selfconscience by telling him he is different. If he start to notice his behivors or they become out of control, that would be the time to tell him. We are all unusual and different in our own ways, thats what makes us special.

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