How and when did you share the 'news'?

malcivar

Chris is 2 1/2 now and the big 'A' word just made its first and official appearance - mild to moderate Autism.  Ok, the major waterworks are over.  I mean, I knew this is where we were headed and I'm as ok with it as I can be - it still hurts though.  

For those of you who've already been through this part, how did you tell everyone.  Up until now, our closest family know that he is in EI and for the most part believe it's just a speech delay.  But now, I think it's time to share that it's not just a speech delay.  Both mine and DH's parents have been told.  My mom, having gone through this herself with my sister, was supportive.  His parents, with an Aspergers child of their own, also are supportive.  Let me tell you - we're so lucky that both sets of grandparents have lived this experience.  We're getting so much support from them.  

How to tell everyone else? I find myself having conversations with friends and dancing around the subject of Chris but I know I can't hide it but I'm not sure what to say.  I don't want to hear "I'm sorry".  

Ideas?  Thanks.  

mjsweetgirl

We didn't make any type of formal announcement. Close friends and close family knew pretty soon after the diagnosis. But other than that we tell people on a case by case basis. It depends on how much information people "need" to know. Determine for yourself the why's of how's thats important before telling people. Its difficult and you will hear a lot of "I'm sorrys" irregardless of who you tell. 

DS1 received his dx at 2.5 in January and its been quite the journey. There are still really hard days but there are also days when we celebrate his progress.

I wish I had a more concrete answer for you, but all I can offer is a big hug and just be thoughtful and intentional with who you tell and how much information you give out. 

MirandaHobbes

MJ above said it succinctly- "be thoughtful and intentional with who you tell and how much information you give out." I didn't want to do a big announcement either.. but I didn't want the information to be skewed. I eventually posted a facebook link to an autism fundraiser run I was doing. On the link was a short 2 sentence description of why I was running and DS' diagnosis. A couple family members sent me a short thoughtful message. I don't talk about it with many people at all though.. I crave conversations IRL about it, but have had such awful responses. Actually the BEST response I've received was a simple "I'm sorry to hear that." Usually I get "Yea but so what, lots of kids have that" or even "Pfft, no he doesn't!!"

ETA: And even though we were diagnosed by EI at 19 months I waited until we had a more formal eval at 3 years before I spoke to anyone about it. I knew the universal response amonst my friends/family would be that there was no way someone so young could be diagnosed.

malcivar

Thanks guys.  You're right.  At least on my husband's side of the family, I think my MIL may have quietly said a thing or two to the members we see the most.  Did I mention we're going to a family reunion at the end of the month?  Hence my worry.

As for my side of the family, I think I'll start with my siblings and then take it on a case by case.   

malcivar

Chris stims and it's increased of late and makes his dx more noticeable.  He looks at things askew (I call it "side-eyeing") and has taken to flapping his arms a bit more than usual.  If he's calm, he's just a cute little 2 year old with a noticeable speech delay.  If he's revved up, I've already been asked if he's hyperactive.  He's got tremendous energy and will not stay still.  The day he was evaluated for pre-school he wouldn't stay in his seat, kept bouncing around the room and opening and closing a closet door.  The psychologist asked me if that was typical him and I *almost* said "no, not at all" but I had to be honest and say that yeah, it's typical for him.  

You're right, about #3.  The only child that really worries me is one of his cousins - one who's very "capricious" (that's a nice word for it) and who's already been mean to Chris (although Chris is completely oblivious to it).  He would be the one most likely to use his dx as an epithet against him.   

I'm not sure when to tell him.  I don't think 2 is an age where he'll understand it at all.  I think I was told about my sister when I went to kindergarten - because she wasn't going with me.  I was told she was "special" and that she was going to a "special" school for children like her.  I didn't feel NOT-special, but I think somehow I knew that "special" wasn't something I was missing out on.  Of course when her school took her on a million awesome trips and mine didn't that changed a bit but by then, I had figured out that "special" didn't mean "special" but I was too little to figure out its true meaning.  

The 'good' news is that there are a few family members, on both sides, that while they haven't been all that open about it, have children that may be on the spectrum or have something related.  So, even if they won't come out and say 'me too', I think they'll understand.  

Thanks so much for your words auntie.  We have a lot to think about but I'm so glad this board is here.  You all truly get it.