Should we disclose that our son has AS?

Post Reply New Topic

Hi. I'm an NT parent with a 7 yr old AS son who was diagnosed almost two years ago. At the time we decided to keep his diagnosis confidential (only a few family and friends, as well as teachers, know), since he is high on the spectrum. Our main reasons for this were that we didn't want him getting labelled, and I also felt that he had the right to decide, when he is a bit older, whether he wants people to know or not (rather than us telling everyone straight off and him having to live with it). Also, he has made a lot of progress, and maybe some stuff will not be as obvious when he is older.

I would be interested in hearing from others, particularly those with AS, as to whether you think this is the right decision, as I am starting to wonder if people would understand him better if they knew. For example, there was an incident at the local swimming pool this afternoon where a mother ended up semi-complaining about his behaviour and I half-wished I could've just said, "He has AS and struggles to know what the right thing is to do". Another thing is that a couple of people that we have told lately have told us that it didn't surprise them, so it makes me wonder if others are noticing it too. Any advice?

I'm not really sure how your 7 yr old feels about it, but I know that I always got really angry at my mom whenever she would tell anybody about my AS. I'm impressed that you haven't told many people, as I imagine that can be very difficult for a parent at times. It always seems like whenever we told someone about it who didn't already know me well that they would make a bigger deal out of it than it was and treat me like I was an idiot .

Despite the fact that I was diagnosed at 5, my parents only told close family friends, doctors, therapists and teachers. I didn't even know myself until I was 14. If most people don't know, then he will hopefully be able to learn how to socialize a bit better - at least that's what happened to me. Those years were miserable, sure, but I got a lot out of them, and with the right intervention I'm sure he will as well

I think it all comes down to how he views himself (if he's even aware of his diagnosis): how does he view his Asperger's? Is he comfortable with his diagnosis, or insecure about it? Here is where you'll find your true answer. Good luck!

See if you can talk to him about it, see what he wants.

After I was diagnosed when I was 8, my mom always used to introduce me as "he's autistic" (despite the fact I have AS...she thinks its the same thing and the fact I had no clue what she was talking about until I was 9) and she still does to a point (after which people treat me like i'm five and the fact I have AS is the only thing they remember about me). If its to someone at the pool or something to explain his behavior after he does something, go ahead, but don't make a point of it. Don't introduce him to strangers as an Aspie. Also the thing is several of my friends don't even know because I haven't told them (to those I have told they say it explains alot, so I think the remainder sorta know I have or simply think i'm really eccentric).

But you should've said something to someone at the swimming pool about that. THAT would've been something to explain why he acted like that (when i was 10 or 11, I pushed a shopping cart off into the road after we were done using it and it hit a woman's car. This is far and away the stupidest thing i've ever done in my life. Now this woman didn't really care that I was autistic, but it probably stopped her from suing my mom.)

I also agree with what other people say. You should really ask your son what he thinks and if he'd feel embarrassed if you did disclose to total strangers what he has (my mom has YET to ask me this)

There's no way I would. You just can't underestimate the degree of negativity in people's reactions to a statement like that.

You say 40 words to the other parent, she/he may only hear the 10 words that are the most sensationalisitic. Then, it all gets repeated...

Dont tell someone out loud in front of him if you are going to disclose...It makes the kid feel like you are talking like he isn't there. Maybe you could type out a newsletter and update it every six months. You would be discreet,and it won't feel like people respond to him because you told them so.

i feel just ok telling coz i do get hyper sometimes which u can see certain things i do like today we were playing some card game and one of my class asked can i play piano i just answered ya sure but then i thinged song called angels dont kill and i started to play it by pure insting

Thanks for the feedback everyone. For those who asked about how my son feels about it . . . well, I don't really know if he actually comprehends much at the moment (or maybe he just isn't interested in communicating about it). I only broached the subject with him a couple of months ago and all I told him was that the reason why we visit the hospital etc. is that the doctors think that his brain works a little differently, and then explained some of the things his brain does better than most people, and also some of the things that he needs more help with than others. He didn't really say much . . . and then just got really engrossed in a picture book I gave him to teach social skills. I will save the AS word for another day, as I think ( at 7 yrs old) it's more important that he understands what AS is, rather than just telling him some foreign-sounding label and expecting him to fill in all the blanks. The only thing he gets majorly upset about is if his younger sister points out that he doesn't have any friends at school (which hopefully she is never going to do again since she got such a roasting last time!), so I guess there is a bit of sensitivity with him there.

Although we are keeping the diagnosis confidential at this stage, I will sometimes mention to people that my son struggles a bit with social skills and is a bit of a loner (I wouldn't say this in front of him though). I think I am comfortable in the meantime with what we are doing (ie. not telling a whole lot of people), it's just that I have second thoughts every couple of weeks, especially since I know there are some people who won't necessarily say it to us, but think that we should just come out with it - it sort of makes me feel pressured in a way . . . .

Positives
If the school knows, they'll be more understanding of things like meltdowns and schedule changes. They'll also get funding to provide additional education/assistance.

Negatives
The remedial effect: Sometimes a school will assume that a kid should be in the remedial class even when they don't need to be. Over-Labelling. Labelling is fine provided that it isn't constantly repeated or used as an excuse.


If the Aspergers is fairly detectable - good teachers will pick it up quickly or if you think that your son will benefit from additional resources, then you should disclose. If not, then don't.

But... Don't keep your son in the dark about it either. He should know what it means otherwise he's in for a rough ride socially.

Thanks, Gavin. The school do know and he has an IEP. Other school parents don't.

Instead of using the label, you can tell people he has difficulties with this and that like you could have said at the swimming pool he has troubles knowing what is the right thing to do.

I also did get pretty pissed whenever my mother told someone about my AS. And I also didn't know for a few years about my diagnosis I was about 14 when I was told about it and yet I still didn't completely undestand it until a year later.

I think you should let him know about it, because when I started to understand my diagnosis, I started doing research and finding ways of improving in areas I needed it. I also started to attempt to be aware of how other people acted and compare that to how I was acting.
I also would keep it very confidential, I would not tell anyone about my diagnosis, but after I while I started to loosen up. Whether I told them or not depended on the person, I would ease them into it. But, I pretty much (not intentionally) waited until I was much more progressed in social areas where I would fit in a lot more. Some people would take it as a surprise, as though they could not tell, or they would be very understanding.

As for letting other people know, think evaluation and strategy. When first meeting somebody, wait until you talk to them for a bit and see what they're like. See if they seem understanding. Like I said before, it depends on the person sometimes. There are people who will say that Asperger's is not an excuse for whatever behavior, and there will be people like the lady who hired me at my job who was more than willing to give me a chance if I would do alright with working with the customers and co-workers. People like her would take other things into consideration, like what type of person I am, and my determination and a bunch of stuff like that.

I think its a personal choice in that you have to decide what you think is best for your son. Perhapse even talk to him about it. I know that 7 sounds young, but children can understand alot. Last year I spoke with a fellow aspie who was 5 and was aware of his diagnosis and to some level what that ment, as his mother explained it to him so he would understand. He described quite well how he felt about it. My family has always been pretty open about my Asperger's Syndrome though in the begining I was not so comfortable telling my peers. Now I am quite open about it and don't hide it at all because its a part of who I am. I feel that if I can be fully open about being an aspie, even to the point of jokes and laughs, then I have no reason to be ashamed of it and can accept it better. When it comes to discloser, individual preferences vary.