At what age should I tell my son he has autism/ asperger's syndrome?

Lisa - posted on 05/31/2012 ( 18 moms have responded )

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My son was recently diagnosed with high functioning autism. He is very bright, started reading at age 3 and can now read books they use in grade 1. He has an amazing memory and we have started learning addition and subtraction at home. He turns 5 in July and will be starting kindergarten in September.

I feel like we should tell him before he starts kindergarten. I fear he will be teased and called names and I want to give him the tools to combat any bad feelings this will cause. I hope to help him to understand that his brain works differently than other people but that is not a bad thing. I want him to understand that being autistic isn't something that will hurt his life, it'll just make it more challenging.

Any experiences you can share or advice you have would be greatly appreciated.

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Anaquita - posted on 05/31/2012

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I told my son when he was diagnosed last summer (at age 7) because I was putting him into a social behavioral therapy group, (which I highly recommend for any kid on the spectrum, along with a martial art) and he would have his IEP changed, and help reflecting that. I felt he needed to know, and hear why, from me first. When introducing him to it, I used a book to help explain, which is titled "All Cats have Aspergers Syndrome". It's adorable, and on the level a younger child can grasp.

Diana - posted on 06/12/2012

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My girl was 4, in regular pre K and seemed SO much smarter than the other kids. And less coordinated and social than them. She noticed these things and so did her teacher. After the diagnoses came out, I took it and found out as much as I could find (13 years ago). Put it in language I thought she would understand. Told her about Aspergers, then she put the 2 together and said, "That's me! I have this!" It was like a light came on; a weight was lifted from her shoulders. Since then, knowing that she had to work more for certain things because she was an 'aspergian' made it easier.
Say it like it is! It's not an insult. In this household, it's almost more like a compliment. Also, this means she gets away with nothing! All the responsibilities that go with that word. Einstein had it. Her Dad has it. Be brave and work hard.

Lisa - posted on 07/04/2012

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Thanks for the support and wonderful advice. We are going to tell him this summer. We had a meeting with his kindergarten teacher, support teacher, and the principal at his new school and they encouraged us to consider telling the class sometime in September or October. The other children will notice he's different and we agree that it's important to be open about why he's different. So, I've ordered some books from Amazon to help us out when we explain it.

Because the DSM-5 will be eliminating the diagnosis of Asperger Syndrome entirely, we have been advised to teach him that he has "high functioning autism." Unfortunately, most of the great books for kids are about AS. But I found 3 that talk about autism and one is specifically about "high functioning autism."

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User - posted on 07/03/2012

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Younger kids are surprisingly accepting now. My older is starting second grade. He told his class about his brothers asd and they were so sweet and kind with my little one! Always asking how they could help, how to say hi so he wouldn't scream ect. This is so much different than the generation I grew up with. I think we are raising kinder and gentler children. Also, the more confident he is about it the more they will accept it. Hes going to do great especially with the wonderful start you've given him.

Victoria - posted on 06/21/2012

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We have always been honest with our son that has Asperger's, ADHD, ODD, & Mood Disorder. We also explain to him right & wrong. We tell him that he makes his own choices & no one makes him do things. He has a therapist come & get him every other week & she comes to visit the family once a week. It is ultimately up to you when to tell your child. Our children are extremely smart & pretty much know that things aren't right many times themselves.

User - posted on 06/17/2012

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I have approached his diagnosis in the same way friends approached talking about the fact that their son is adopted....it was just part of the conversation.

My son is very bright...bright enough to realize that he goes to a therapist (sign on the door refers to children's therapy....why do I see a therapist? Do you see a therapist?), while he waits, reads the signs on the bulletin board, sees all the books...etc. (he is eight and has been able to read since 3) So, it is just part of the conversation.

And for the reading, loved being in the grocery store line with the Cosmo magazines...in his very loud voice, at the age of four or so, Mommy, how do you turn a man on so you can drive him crazy? From that moment on, learned I needed to flip the magazines over so you couldn't see the covers!

Dawn - posted on 06/14/2012

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I am waiting for my son to ask about it. He is 4 and has ADHD, ODD, mild SPD and PDD-NOS. Other kids ask what is wrong or why he does xyz, my son knows he is on a special diet and takes medication (most is suppliments but eaiser this way) to help him be healthy and make good choices. In prek some of the girls "adopted him" and it was so cute---at snack they would tell the teacher to get his snack or point out that he cant have that so you need to get his special food. The girls did give in to him too much though--let him have his way too much and the boys never "let him in". Not sure how this will play out when he is older. So for now I am waiting for him to notice (he parallel plays and thinks whoever is next to him loves him) and when other kids ask I just tell them he does those things because he doesnt understand--can you help teach him, or He does that to help himself feel better like when you have a night light or favorite toy to help you when you get upset. The otherkids seem to get it better than their parents! Just as everyone is saying--all our kids are diff and there is no set age to tell them. Heck even NT kids are not ready to hear/learn about things at the same time (and we all know some adults who dont seem ready either :) ) Just be there to reassure and offer advice when needed. If it gets to be a big problem maybe have the teacher talk about autism to the class with out mentioning names---dont do it yourself though you can provide materials, if you give the talk then "mommy had to rescue you". Maybe it will not be a problem. So many kids are in classes w/"different" kids that they seem to be more accepting than our generation was. Let us know how it goes.

Lisa - posted on 06/13/2012

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Diana, what great advice. I'm going to show this to my husband because he is hesitant to tell him already. I think it's important that he know so he can own his difference and take any sting out of any possible teasing. And his dad also has it. I'm of the mind that keeping it from him will ultimately hurt him, like we're ashamed of him. We are so proud of him and I want him to know that although he may struggle with some things, he is super smart and has an amazing memory.

Jennifer - posted on 06/04/2012

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The one thing I learned is not to let my son( Jonah) use his Aspergers as an excuse for disrespect or misbehavior. I do know when his emotions are all over the place and when to let him calm down. He needs his space. Sometimes its an hour or 2. Sometimes he is overtired and he just goes to bed now. But when he is out of control I will let him know. He can be so mouthy sometimes. If it goes too far, there are consequences. Jonah will be 17 in July.

Also, every child is different. I have been trying to get Jonah talking. Then the aggression, temper and attitude can be worked with.

You are doing a great job, and I know its hard not to second guess ourselves.

Lise - posted on 06/04/2012

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That's good to know that your very familar w/ the people @ his school and involved. I've had to experience everything the hard way. It doesn't help that my husband has mental issues himself that I'm dealing with. It will help you and your son to have the support you have if and when such situations happen. I'm glad I've finally found the support and resorces that give me the right words to use with my son and him to know how to handle situations better. He gets very upset and depending on what's upset him, he may or may not get past it quickly. He has been bullied and he doesn't forget who they are. One time I took him to school, he went to the morning recess, bee lined right over to this bigger boy and kicked him in the leg. I had to get him away and found out this boy picked on him when he was on the bus. My son is bigger than the other 3rd graders, so I don't think other kids will pick on him. In fact the teachers have informed the other student about how he is different and kids have been very helpful and patient w/him. I hope this is helping. I sure helps me to reflect on how far we have come. Thank you Lisa :)

Anaquita - posted on 06/04/2012

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I think a lot of doctors will still call it Aspergers even if the official diagnosis is HFA. If nothing else but for a benchmark on where on the spectrum they are. That is of course if the changes proposed are kept. They are getting a rather large backlash for it. At your son's age bullying shouldn't be too bad. Though the older he gets (and his peers) the more others will notice and the risk can increase. I worry about it as well. Already my son plays more with girls as they're prone to being nicer to him.

Lisa - posted on 06/04/2012

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Thanks, Jennifer and Lisa. I am very lucky in that I am a teacher in the school district in which my son will be attending. And I am old friends with his future principal. So, I'm not worried about the teachers or his support worker. I am worried about him getting teased and bullied by the other children. At first, I thought he should know right away but now I'm not so sure.

It's even more frustrating because when the new diagnostic manual comes out next year, Asperger's will no longer be a viable diagnosis. Now, all children with Asperger's Syndrome will have High Functioning Autism. So, even knowing what to tell him he has is problematic.

Lise - posted on 06/03/2012

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I agree w/Jennifer. I have a son w/asburgers. He was first diagnosed w/Autisum @ 3. A yr and a half later I applied for SS for him and they wanted him retested. Silly rght? I'm glad I did. The same nuro said she had been leaning tward Asburgers back when he was 3 and w/him older she got a better idea that he has Asburgers. With my experience I wouldn't make such a big deal about it at first. Just help him the best you can w/support from his school and hopefully he can qualify for in home theripy, to adjust and understand different concepts. It's not easy, you have to be very patient and try to see where he's comeing from. My son is 9yrs and the special ed teacher he has now and regular teacher don't treat him like he has a disability. He is doing so much better. He knows he has Asburgers and at one point he tried to use that to justify his aggressive behavior. The school he was in befor, the teachers treated him like he had a disability and I realise now that it held him back from learning how to be self relient and more responsible for many things in his life. I'll have to say though, every child is unique in their own way. So it depends if you think it will help him to know right away or hurt him. I know because of the problems I've had w/teachers concerning my daughter I need to get an advacite through the Institute of Education. I think that's what it's called. But they will make sure your child is being treated the way they are suppose to. I'll check and see if I'm misstaken about what it's called. Other children are one thing, but makeing sure the teachers are treating him right is anouther. I've got 4 kids and my oldest is 19yrs old, she is quiet, not a trouble maker. Some teacher didn't know that she needed help, they weren't nice to her and she didn't graduate. Found out resently she has ADD. We mom's need to stick together, it's good that we can get an idea of what others have gone through. What ever you decide to do and what ever happens you know you have other mom's to talk to. You'll know what to do when the time comes. Your in my prayers. Tak care :)

Jennifer - posted on 06/03/2012

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Unfortunately aspergers kids wear their hearts on their sleeves. I have found we as moms, despite discipline have alot of diffuculty with their tempers and aggression. I knew since my son was little there was something wrong, but couldnt convince drs,etc. that anything was wrong. He wasnt diagnosed till he was 11. Now he is thriving , finishing grade 11. All I can say is its frustrating as heck sometimes, but we have to perservere/

Lisa - posted on 06/01/2012

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It's funny; I am currently looking at websites for martial arts studios in my area. I think I found one that is close and has classes for 3 - 6 year olds. And I am planning to get the book and have it ready. Thanks so much!

Anaquita - posted on 06/01/2012

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Well, if he asks again Do try that book. It's informative without being overly so. And for tools social behavioral therapy. (I recommend a group with others his age but 1 on 1 works too) It would helP him learn social cues, how to handle frustrations, etc. Which has been tremendously helpful for my son. And a martial art ( my son is in taekwondo ) will help with balance, coordination, focusing, and if you find a good place, they also emphasize good behavior at home, and school. My kid started at age 5, and it's helped him with his clumsiness ( Asperger kids are notoriously clumsy ) and his focusing on subjects he's not naturally into. Most of all, good luck!

Lisa - posted on 06/01/2012

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Thanks for the advice. Anaquita, I think we will wait until he's around 7 too. I just fear he might overhear us or his teachers talking; he already overheard that he has Asperger's Syndrome and asked me about it. I told him that he is different and that is a good thing. But, he seems to have forgotten that and no longer asks. I just want to give him the tools to own who he is and to have tools to combat any children who tease him.

Savannah - posted on 05/31/2012

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I think that best bet is to trust your gut. You know him best and you will know when the right time to tell him is.

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