Question for parents of a HFA kid | Autism PDD

I've shared this information on a need-to-know basis. Teachers and family found out first. I avoided telling others -- such as acquaintances and peers' parents -- until my son was ready to be told himself, which we did just before his 9th birthday. I didn't want him to first hear about his disability through negative gossip.

Another reason why I waited to tell others and waited to tell my son was that I needed time myself to learn about autism and deal with the diagnosis emotionally.

When he was a small child, his oddities didn't stand out so much, and people could shrug off a meltdown as "just another tired or hungry kid" or "just another kid in his terrible twos. But now at age 9, people don't cut him the same slack, so we're gradually re-definining "need to know". We feel that people will be more accepting of him if they know why he behaves the way he does -- otherwise they'll just develop their own negative theories about it.

I think every situation is different. My ds generally acts good in public - a little more defiant than I would like, but generally okay. It's pretty rare that he has behaviors that make people look at us funny. It's at home that we have issues! So, if he is functioning fine with people in public, I feel no need to tell anyone. If and when he does act out in public, I have occasionally told strangers when we lived in our old town - don't know what I will do here in this small town.

I think you kind of have to go by how your child is, your attitudes and also protecting your child's privacy to some extent.

I know a lot of parents who have recently told their children about their AS because they thought they would find out from someone else (they had told so many people about it), Norway Mom. That is a big part of the reason I don't tell many people as well!

All our friends and family know. People at church know. Strangers------only if someone asks. But he is really good now going to places and he appears to be a completely normal boy! The more I see "NT" boys in the stores----the more I am reassured that my son is doing NT behaviors. I think ALL boys have some sort of ASD characteristics!!!heh, i would not have minded when I was little my parents tellin the community, maby I woulda not been treated as an outcast by the parents around me who would not let their kids play with me cause they thought i was bad er whatever. I moved outa their summer of 1991, so them knowing woulda not bothered me.

We moved to NY, been here ever sence, i must say, and this is only recently, I feel the best I have ever about that whole issue... I mean, my parents never wanted to discuss it much, and i always kept it a secret, heck! It actually in middle and high school ment nothing to me, history i suppose. Had my parents told the community i lived in, or ppl in the school knew i could never have had a semi-normal childhood, or growing up time, when it counts most, i wanted acceptance, always was odd, but had friends, got chances to play sports, and do much of what peers my age do. I was different obviously, never received theripy, makes me wonder how much different i would be now, but any rate, I even kept friendships with kids in my neghboorhood until high school, b4 they all ditched me, i was to embarrasing to be around, to aggressive, weird, that hurt so much... but figured it would be better to go thru that then then have them know in the past, resulting in even earler ostrisizim.

I wanted friends in high school, i wanted much acceptance, i hung with the wrong crowd, did the wrong things, screwed up in high school and collage, in the end, not having ppl know in the past (accept for my parents obviously and maby 1 or 2 close neghboors at the time, no one else, as it was never to be discued again in my house). In the end i did alright, better then many of the ppl i hung out with, dont get me wrong, not everyone i was with was bad, i just wanted to be someone in high school towards the end, as uneque as i was, in the end, i had friends, good and bad, many experiences that NT's have, the good and bad, and learned, got better at socializing, and became a productive member of society.

Once on the spectrum, always on the spectrum, i dont mind shairing my DX with some now, but never would i want only absolutly nessissary ppl to know in the past, i had a good, semi-normal childhood, and this knowledge about me woulda screwed all that up, afterall it was not until later did I realize the real friends I had, post-schooling!Ive only told immediate family and its hard because some people in my fam. dont believe it or keep telling me I just need to socialize him more and tone down his obsessions and he doesnt need early intervention or therapy even tho hes done the strangest things in front of them! I live with my son and know him best and even im still struggling to accept on a day to day basis but I know something isnt right even tho he seems so nuerotypical theres always something that slaps it back in my face. I feel that if i tell a stranger theyll look at me like im stupid or just making exscuses for my son and myself!
I am big on honesty and in the beginning everyone knew that was her in life..now I have a hard time now disclosing her diagnoses..I still worry if others are thinking the wrong impression of her if she doesnt respond like her peers.

   I am learning be more private to strangers as she is losing almost all her autism traits and I grit my teeth to keep from saying anything..now it would just bring attn. to her than whatever quirky traits she displays..usually it's her phrasing of words that stand out..but not too bad..she is so sweet that no one seems to notice anything..but me:)

I think all teachers/therapists need to know as well as others working with her in anyway...
We didn't get a diagnosis for my son until age 4.5, so by then we had a
sense of what the future might hold for us. All my family knows about
my son's diagnosis. Most of my close friends and neighbors do as well.
It's just too hard to hide given that I'm in constant contact with most
these individuals, my neighbors see the therapists coming and going, and
quite frankly I'm really not the type of individual who feels autism is
something that needs to be a big secret. I'm not by any means ashamed
of the fact my son has this disorder.....in fact, I'm incredibly proud of how
far he's come and how well he copes. Since he has a twin sister, it's
extremely common for people to compare the two, and it's so much
easier if they know/understand why he's so different from her.

However, I don't inform strangers or acquaintances unless I feel there's a
reason/need to do so. If he's coping fine in the situation he's in, such as
T-Ball, group swim lessons, etc, I let it go. I always tell his coaches/
instructors as I feel that's only fair to them. All the birthday parties he's
attended in the past year have been at the homes of kids whos moms
know about his diagnosis so that hasn't been an issue. And as of yet,
he's never had a melt-down at one of them.

All in all, I'm pretty open about it, partially because I want to educate
others about what autism ISN"T, and partially because I want their
understanding. So far EVERYONE, and I do mean this, I've told have been
incredibly supportive. In fact, most have gone out of their way to make
sure my son gets included in everything and want to do all they can to
help him feel welcome and accepted. I feel extremely fortunate to be
surrounded by a very caring community of family, friends, and neighbors.

At some point in time it's my intent to tell him about his ASD. I strongly
sense that he is going to have enough self-awareness to know he's
different and I feel it's extremely important to he hear first from me why.
I want him to know he's loved and accepted for who he is first and
foremost, and while he may think and learn differently from other
children, it makes him no less valuable or important.
I haven't read all of the other posts. We have generally been private about ds' diagnosis. We became more open this last year because we knew we were leaving our town (moving away). But in our new town, we are generally very closed-mouthed about his diagnosis. We don't know how people are going to react.

Ds is VERY high-functioning, has a few friends, can be appropriately social (but not always) and has less and less meltdowns (almost never in public).

Someone told me as we were pursuing a diagnosis to always keep in mind that once you have told someone about the diagnosis that you can never take it back. Once your child reaches an age that s/he is able to understand better what is going on with him/her - if you have already told everyone - well, s/he won't have any choice/say in the matter at all. My ds is 6 and I figure around 8 or 9 if he wants to tell others, that will be up to him. But, he will have the choice to do so.

I tell people when I am leaving him in their care. I feel that is only fair. I usually tell them they will not notice much of anything - as he is almost always good for others (just not us!). Usually, I get questions of "Are you SURE? He was so GOOD!" But once in a great while, I'm glad I told as maybe there was an incident and rather than pushing the issue, the caregiver had a little more insight in how to deal with things.

Otherwise, family and close friends know. My ds goes over to our new neighbor's house frequently (we have lived here 2 months) and her older twins practically live here. I haven't told her - don't know if/when I will. We shall see how kindergarten goes - it may be just fine or I may just have to tell everyone in a surrounding 5-county area! I play it by ear - but mostly it is on a VERY MUCH NEED TO KNOW basis.

I want to add I am not in any way ashamed of my son's autism. I just know how a LOT of people still are and I don't want this issue to make people not want to be around him. This happened to us after I told one "friend" so I am gun-shy on telling others unless they need to know. This completely goes against my personality as I am a former social worker who did nothing but advocate for kids. So, I feel I am being a hypocrite, but I live with that feeling because I just don't want people to treat him as a leper. I do realize that education and awareness may help that not happen - I'm just not ready to do that at this point. If, in a couple of years, ds wants to do that - I'm all for it. Until then, I want to keep it so that it can be his decision at some point.

Just my two cents (well, maybe fifty cents!
With strangers, it's more on a need to know basis. For example, if I go to an event, such as a birthday party, for a kid in C's class, and he is acting just like all the other kids, I don't usually say anything. However, if we're at a party and there is an incident (meltdown, issue with another child) I typically explain C's ASD to the other mom's. Also, the kids are now at an age where many parents are dropping of the kids at birthday parties and leaving. While C has never had an incident at a party, I still don't feel comfortable leaving because if there is an incident the hosts shouldn't have to deal with it. In those cases I've explained C's ASD to the hosts. I told the dad's coaching his little league team about his ASD, but not all of the other parents because it simply never came up. I've found most people to be really nice and understanding about it.

I would rather have my son labeled as the "autistic kid" rather than "the bratty kid who screams, yells and doesn't listen." Also, I must admit to some selfish vanity here. I would rather have people know that C is ASD when he has a meltdown rather than have them think I'm just a crappy mother with no control over her child.
Ooops, in my haste I misread the meaning of the post
We're very open about our son's pdd-nos, and feel very good about that. He's mildly affected, very high functioning. We've been very fortunate not to encounter any prejudice or discrimination because of it. He's still very young (almost 5), and as he gets older and more typical in his responses and behavior (his progress in the last year has been amazing), I imagine the subject will only come up with teachers, coaches, etc.

By being open, too, I've been able to meet some other moms of kids on the spectrum in our area, and we're forming an informal support group. This sort of networking wouldn't have happened if we'd kept it a secret. Not a fan of secrets anyway.
But this is the sort of thing that is so situational. Only you can decided what is right for your situation. Best of luck!
Most kids who attend Se in school no they are different cause they get teased at school. By the way this against the la since 2005! If this happens they must transfer the bullies or the bullied kid. No transportation required though included. There's so much new knowledge about asd that not all nt that yes some asd people are verbal. Daniel is good with signing. He learned it last year in all day Se. I have been telling a lot of people. My ds tends to have poor social
boundries and I rather people know why he talks at them or keeps
touching them. People will figure something and I remember from time to
time meeting kids like him and just thinking that they had poor
boundries because they were being abused at home.
Sometime I will not say 'he has autism' but say something like 'we are
working on not talking to strangers' . Or when I see that someone is
trying to give him little signals that they don't want to talk I'll say "My ds
has problems reading non-verbals - it helps him if you just let him know
that you do not want to talk right now". I say it very friendly and matter of
fact and most people are thankful for some explanation or guidance on
how to repond.As Jasper has aged, I am finding it more important to tell instructors and
other parents about his ASD. At 2 and 3, many of the typically developing
kids were just as squirmy and anxious as he was. Now at 4.5, he stands out
more. And he sometimes needs some extra support.
I tell people who I think need to know in order to help them communicate
with him and understand him better.   Most people are grateful and
accomodating. While some just stare at you blankly......
I'm not a fan of secrets either! But given my situation (as I previously explained) I want my ds to be able to have as typical a life as he can here. I may open up more as we settle in and discover our new community - but I don't think it's wise for ANYONE to move into a new community and start spreading your child's diagnosis (if they're high-functioning) without first getting a feel for the community. I too have connected with other moms by talking about the disorder. I can pretty easily spot a child on the spectrum and so I usually make a comment about sensory issues (usually what our kids display in public). Sometimes the other parent (after talking with them a while) will disclose a diagnosis and then I often do too. Don't know what will happen in this new community though.

I feel like I'm saying this community is intolerant, when actually I don't think they necessarily are. But, it is growing VERY quickly (even though it is a small town) so things can change. The school is great - which is why we moved here. And I heard from other parents I contacted (via a support group in another town) that the town is pretty accepting of kids on the spectrum.

Anyway, I'm going to stop getting so defensive about our decision. Everyone has to do what THEY feel is right for their child!

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