When Did You Tell Your Child That They Had Asperger's/autism?

Updated on July 28, 2011
M.B. asks from Reading, PA
13 answers

For those of you with a child who has Aspergers or high-functioning autism, at what age did you tell your child about the diagnosis? My 9 year old nephew was diagnosed with Aspbergers/ADD about 3 years ago and has been asking a lot of questions about autism and Aspergers lately. His mom (my sister) does not want to tell him yet because b/c she is afraid he will use as an excuse avoid doing things he doesn't want to do.

Just wondering when and how you told your child and how it went. I have no intention of interfering in my sister's parenting decisions -she is a great mom and I can't presume to know what it is like to parent a child with Autism.

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J.C.

answers from Philadelphia on

Another perspective is that this child may be relieved to know why he is different and that it has a name.

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B.G.

answers from Los Angeles on

I don't think it should ever be avoided. I think kids should always be aware of what is going on.

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M.J.

answers from Sacramento on

Our son has ADHD, which is on the autism spectrum. We told him when he was in kindergarten. He had a best friend who also had the condition and it made him feel like it wasn't a big deal.

Now that he's eight, he knows why he doesn't feel and act the same as other kids.

Forget the whole "don't want to be labeled" garbage. These kids get labeled all sorts of things by others anyway (ours was called a "bad kid") and understanding they have a valid medical condition is the best possible label of all. Parents with kids with asthma or diabetes would explain to them their medical conditions, right? No stigma in a label there. Same here.

Kids will always make up excuses for their behavior anyway ("It was so-and-so sister's fault!"). Our son does try to pull the, "I didn't mean it. It was my ADHD" strategy on me and I just don't put up with it. He knows we still have expectations.

You're smart, though, to stay out of this. Parenting a special needs child is exhausting beyond belief and having others second guess what you're doing is draining. Let her do what she feels is best.

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E.C.

answers from San Francisco on

I've told my 9.5YO Aspie DD in bits and pieces since she was around 4YO and in a social skills playgroup. In hindsight and as I've learned more about Aspergers, I can see a lot of my childhood behaviors are consistent with being an Aspie myself and so I've been honest with her about the ways that mommy's brain wiring makes certain things more challenging (social interactions) and other things easier (observing/memorizing assorted details - I honestly think that the Aspie wiring of my brain was an asset when I worked in Pharmaceutical Quality Assurance because I actually sort of enjoyed scrutinizing things in detail repeatedly and finding inconsistencies when my neurotypical colleagues would find it agonizingly dull. IME recognizing that my wiring has a name was a bit liberating because now I could understand why certain things were more challenging to me - not so I could make excuses, but so I could think of alternate ways to deal with situations or how to prepare myself for situations I know would stress me out, and also so I could understand that the difficulties weren't just because I wasn't trying hard enough.

My aspie DD has not yet used her dx as an excuse for anything (if anything, her neurotypical twin is more prone to making excuses!). And she tends to be h*** o* herself already, so I'm glad she's aware that there is a certain biological component to her social struggles so she doesn't just say that she's not as good as her sister. I often tell her that there *will* be things that will be more challenging as an Aspie but also that there are ways that her focus and attention to detail can become advantages. Even the difficulty in "getting" social interactions can be good sometimes (I used to wonder why every now and then there'd be someone at school or work who seemed to feel comfortable confiding in me and later I realized it was probably b/c they could tell I didn't do the social "games" (gossip, etc.).

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S.H.

answers from Honolulu on

My friend's son is high-functioning Aspergers/Autism.
He knows.
They tell him he just learns differently.
They don't tell him every technical aspect of it.
He's a very smart kid.
He has an Aide in class with him.
He is not in any way ostracized and has many friends.
He is like any other kid. Except, he is unique.
And learns differently and has strengths and things to work on, like any other kid.
And he is lucky, because he is getting help.
Some kids don't.
AND there are RULES and ways of behaving, just like any other human being in this world.
"Excuses" are excuses.
And his parents' call him on it.

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C.C.

answers from San Francisco on

My cousin's son has Aspergers (he is 11), and they have been very up-front with him about it ever since he was diagnosed (when he was 2). The child has a right to know, and to understand why he perceives the world differently than others. For instance, he will say rude/inappropriate things, and his parents will correct him and say, "You know that is an inappropriate thing to say. What else can you think to say that would be better?" And he will think about it and try to say something more appropriate to the current discussion. What if they had never told him that he has Aspergers? He would definitely wonder why he never knows what the "right" thing to say is, while his little sister is never corrected and/or never seems to say anything inappropriate.

The other thing I'm thinking about is, is your nephew not getting any occupational therapy at this point? I'm sure it would help him. But of course, in order to do that, he's going to have to be aware of his condition.

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N.B.

answers from Minneapolis on

My nephew is now 18 years old and is an Aspergers boy. I am not sure when he was told, but I can offer a wonderful book that is great for the kids and for them to help others "get it". I discovered it when doing a research paper for my Special Needs Child Development course when I was getting my degree.

http://www.amazon.com/All-Cats-Have-Asperger-Syndrome/dp/...

http://www.youtube.com/watch?v=xSMw-noNcnY

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R.K.

answers from Appleton on

My granddaughter has Autisim. Autism has become my daughter's excuse. She has her in a therapy program and reads up on anything Autisim related. But her excuse for bad behavior V has Autisim. V is 9 yrs old and has maturity of about a 4 yr old. She doesn't listen... but if I or my other daughter take her for an all day outing we have little problem with V. We just tell her behave or go home and she behaves. No she is not like all kids her age but she does behave.
I say that because yes Autisim can become an excuse. So can any other illness. 'My knees hurt so I sit on my butt all day watch TV -- get fat and out of shape -- so my knees hurt more so I sit more' How many times have we heard that from older people? People will come up with excuse after excuse to not get involved in life. Autism/Aspbergers is no different.
Instead of using it as an excuse. Start reading up on people like Bill Gates-Donald Trump and Dan Ackroyd all of them have Aspbergers and Ackroyd also has Tourettes Syndrom. Show him how he can be a success in life no matter what the dificulties.

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R.D.

answers from Richmond on

Honesty is key. I would tell him the truth, this is what you have, this is what it is, this is what that means, and (most importantly) THIS IS WHAT YOU CAN DO... not 'this is what you CAN'T do'... then he has no excuse, and mom's been honest ;)

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D.B.

answers from Los Angeles on

I've always let my two kids know what their diagnoses were. My oldest has infantile or congential nystagmus which is a vision problem (dx'd at 3mo) and my second one has ADD (dx'd at 5yo - but we knew way before)

I have used their diagnosis as a way to explain quirky behaviors, but I've also instilled a very hard rule of noone being able to simply say "I can't" without asking for help first. So if my daughter truly can't see something, she HAS to ask for help. If my son truly can't get himself from stopping his racing thoughts of imagined disaster, then he has to ask someone to help him being meditation breathing and help him to calm down. There is no "can't do" at our house.

I think that if your nephew is asking those questions then he already knows something and is probably asking for confirmation for stuff he's overheard and probably some comfort that he's still loved. Keep it age-appropriate and within his maturity level. Best wishes.

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T.C.

answers from Austin on

My son is 9, and has Aspergers/ADHD. I have not told him the actual labels, but I have talked with him about how his brain works differently than most people's. For example he is good at science, but not as good at writing.

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J.R.

answers from San Diego on

There is also a great book called "The OASIS Guide to Asperger Syndrome." It discusses when and if to tell your child about his AS. It's a great resource for parents of AS children in other respects as well. Highly recommend it.

D.S.

answers from Allentown on

Hi, Meg:

She could be right.
Labels are put on people for insurance, or
educational purposes.

Look at the child and assess his strengths and encourage those. With his challenges, help educate or build skills in those areas.
If you tell a child you're autistic/ADD or whatever the label is, he may feel like their is something wrong with him. There is nothing wrong with a child with this condition, it is the way he was created. He will have challenges but he can be the best he can be with those who love him and support him.

All the Best
D.

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