Do you tell people your child has Asperger's?

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If your child's Asperger's is not "obvious" or "highly suspicious," do you tell people they are on the Autsim Spectrum? Besides from school people like teachers, administration, therapists etc., does anyone else really need to know?

For those of you who tell everyone, why do you? For those who keep it a secret, why do you?

I think most people would be surprised my daughter has Asperger's. I think it is none of anyones business. If the teacher or other school personal told someone who did not need to know and it got out and then everyone knew, I would be pretty upset. I told my close family and a couple close friends but I don't think it is anyone else's business. DD is 6 so she is too young to even tell her about it, so I don't want random people knowing.

I am curious though how you all feel and who you choose to tell and why.

sometimes i do but only if there is a reason for it. if he's having a melt down in public for example and people are staring at me cause it must be my fault and he must be spoiled then i'll say "what, never seen an autistic kid meltdown before?" it usually confuses them and causes them to mind their own buisness.

also 6 is not too young to tell them what is going on. they might not understand it very much but it's better to let them know right away so they won't feel as if you've hidden it from them in the future when they do find out. i have always been honest with mine through the whole diagnosis process letting them know that their appointments were to 'see if there's a reason you (name specific behaviour)' and when i found out i told them right away. for my step-son i just gave him a simple explaination along the lines of, "the doctor says you have something called Autism. that is the reason you have a hard time with things sometimes. it just means your brain thinks differently than other people. it's okay though, you aren't sick or anything. everyone is different and this is what is different about you." i'm not sure if i could have explained it further or if i should have put it differently but that short explaination was enough for him. in time i will explain more of it to him. he knows it's the reason why he hates loud noises and has quiet headphones and he knows it's part of why he has a hard time getting along with kids at school.

I commonly tell people when it fits into the context of the conversation. For example, talking with other moms about our kids starting kindergarten I have told them that my son is autistic and I am a bit more worried about his transition to K than I was with his older brother. It doesn't always come up in conversation but often it does. People ask about my husband and I getting out and I say that it is hard to do because our son has autism and it makes it difficult to find a babysitter he is comfortable with. I firmly believe that we need to talk about it openly so that more people know about it and it can become more accpeted and understood - Caitlin is much more eloquent at voicing this opinion than I am. I can understand possibly a bit more trepidation if a child is older when they are first diagnosed and they are worried about being stigmatized. Autism has been a fact of life for us since DS was 3 so I think it just needs to be open.

OoOoHh, careful - they might think your kid is like this one:


Aspie Kid<<<

I've felt the need to tell the parents of most of his friends because, well, he spends time in their homes or care. He knows how to self-mitigate but people may not understand that if he just ran into another room to be alone, he NEEDS TO BE ALONE and made that move for a reason. It's often just a simple set of sentences I share: "my son is special needs and it shouldn't be an issue because he knows what to do if he's having issues. The key is to let him tell you what he needs, and for you to believe him. He won't try to play you."

Overall, though, what you are likely to hear my say when I feel the need to say something is "he is special needs." They only get more if they dig for it. That generic term seems to suit my need to "share" without going too far to compromise my son's privacy, IMHO.

Then I've told MY friends because, well, they are my support network and how can they know how to respond when I talk about my child if they don't know the unique situation that exits with my child?

Overall, I think it's important to advancing understanding for people not to feel this is some giant secret, but I am at the same time aware that it is my son's privacy, and not mine, requiring a little extra discretion on my part (now that he is 13 I am aware he would like to keep much more private than is natural to me, so I work on it). Overall, just as you don't run around telling the whole world your middle name, you don't need to tell the people you don't feel compelled to tell.

At first, I decided to only tell my support network and the people who need to know at DS's school (meaning, every teacher who he comes into contact with, which is something I learned I had to ask for specifically - this was to ensure the 504 was being met.)

After we told my son, he decided to have the teacher read "All Cats Have Aspergers Syndrome" to his class, disclosing his diagnosis himself. Since then, I've been fairly open that it runs in our family - and if he's got it, we have it, too. I wasn't about to make my son's decision for him, but since he is comfortable disclosing, I am, too. I hope this is a positive and not a negative in the future - it's certainly made a sea-change in my son's ability to take responsibility for himself, now that he realizes different doesn't mean hopeless.

People have the wrong idea about the Autism spectrum (frankly, I'm not entirely sure what their idea is, but from some reactions, it seems pretty far off the mark.) While I certainly understand privacy issues, and realize our choice is not for everyone (and I'm grateful that we live in a fairly open and understanding community,) I also feel that it's important to embrace our difference proudly and openly when appropriate.

I hope that one day, it will be as casual a thing to mention as hair color or height and weight.

my 12yo announces her dx to anyone who will listen along with some other personal things i wish she'd stop mentioning about me. she does alot at her school to try to raise awareness and has done her speach on Aspergers which she read to the class and the teacher shared with the school because she was too shy to go on stage and read it. she has also worked with the school on her own to make sure that all the teachers are learning about autism. so far we've only had one teacher that was a problem but she was replaced. i think it's great that my daughter tells whoever she wants and she isn't embarassed by it. the people usually stop and talk to her for a while and i think that it might be working to change their perception of what autism is because they can clearly see that she is smart and functional but that she is a little 'different'. i really think that when an opportunity comes up you should tell your daughter about aspergers and what some of the symptoms are. she has probably already noticed some of the differences between how she experiences things and how it seems for other people. telling her will help her understand that and could help her avoid feeling like something is wrong with her. in the end it's your choice, but if it was you wouldn't you want to know? i also think it's easier to tell them when they are small because then they just accept it as how things are without really questioning why or blaming themselves or worse losing trust in you for keeping it secret from them.

My mom did when I was a kid. With my anxiety, it would make my AS stand out more so it would describe me at the moment so she tell people so they wouldn't think I was acting out or being a brat. She would also tell my school so I'd get the education I needed.

But I think other times she didn't tell anyone. She sometimes say I just have anxiety or we just got back and I am tired or I don't understand something such as personal space or she just didn't care because they were strangers and they would never see us again so it wasn't their business.

Does she still tell people when she talks about me? I dunno. I don't really care because I am not going to see those people and it's not like they are going to say about me to her "Oh is this the one with Asperger's?" if they saw me and her together.

Our family and friends, and the school staff know. Other than that it is up to my sons when to disclose and when not to. If I feel the need to give more information, like for example to a friend's parent, I usually name the specific issues without labelling it. For example: he has some rigidity issues and may have a hard time with changes in plans, or he has some sensory issues and may have a hard time with all the noise and need quiet breaks. I have found giving this type of specific information about needs more helpful than just saying "Aspergers", which may or may not trigger stereotypes and misinformation in the other person's mind, or may be completely meaningless to them.

I have probably just had the biggest "DUH!!" moment of my life.
I read constantly. I have books every where. When I'm not in a book, I'm reading about something on the internet. My son has TONS of books, not that he ever reads them.

It never freaking occurred to me that they might make a book to help him understand Asperger's..... I am in such a "How dumb can you be?" state...

Well, I've taken care of that.. They should be here in two days...

Damn........... *facepalm*

Once again, thank you guys!


Sheesh

As a child, I would rather absolutely no-one knew anything about it. Including my mother, myself, and the person making the diagnosis, in fact, but even if I'd been happy to be diagnosed I wouldn't have wanted anyone beyond that. If you have to say something you should just name the issues that might come up like "he needs to spend x amount of time on his own or he gets upset or"; "she gets upset if you change the plan at the last minute", or whatever else they are likely to need to know.

No. Except for teachers because its in my child's IEP, and some trusted family members but not all and not even most. On this matter I let the golden rule guide my actions for the most part, and my child is very embarrased of his differences and does not tell anybody, and I respect his feelings.

My son is aware of his diagnosis and he, like some of the other children already mentioned here, is very open about it.

I tell people on a "need to know" basis - usually when he will be spending time with people and I won't be there, for example, at Sunday School in church or in a shop's creche. His sensory issues mean that by the time he knows he needs to go to the toilet he has to go right away, and it's important to let people know that as they might expect him to be able to wait a little while - he can't.

My son flaps and bangs his head, so I tell people that these behaviours are normal for him and not to worry about it or try to stop him.

I've never had any problems or difficulties with the disclosure, and more often than not, the person I tell already knows of a child with a diagnosis or similar behaviours and is understanding.