To Tell or Not to Tell, That is the Question…

So beautiful. (((hugs)))

Thank you. Your comment (& hug) really means a lot to me. I'll get a real one when I see you next week!!

Ack. I struggle with the same – sometimes the not telling works fabulously – and sometimes it backfires and vice versa. With the telling I tend to see bias… So these days lean towards not telling unless something comes up. Yours is at an age that he might want to tell (nonchalantly) himself if he struggles with something. But I don't know him… Mine sometimes gives "excuses" that aren't quite right so mine is still not reliable in that arena. And I
still haven't figured out what/how to "tell" him either. Agh! All these biases and excuses make it so hard to know what is relevant or useful!

I deal with this more often than I thought I would. Li'l Empress is completely deaf in her right ear, a condition known as Microtia. With her hair growing in and her language exploding almost daily, most folks don't know it. But occasionally, I feel the need to explain myself or her "sound location behavior" to even complete strangers. Then I'm frustrated with myself – for feeling like I "had" to explain . . . But yeah, I know what you are feeling!

((HUGS)) This is something I struggle with too. I wanted to write a supportive comment, but I find that I can't write anything in addition. You wrote so perfectly and I know exactly how it feels. Chin up. =)

I can't even tell you how many times I have been in a similar quandary. It's agonizing to be pretty sure he will be okay, but then wonder what if there is a problem and his behavior escalates b/c the other person didn't have any idea.

I tend to think if you are leaving your child in someone's care, you have a responsibility to tell them, which could be by giving them a short note made for those occasions.

I told my son and I'm glad I did.

http://momsofspecialneedschildren1.blogspot.com/2009/01/try-this-tuesday-explaining-to-your.html

As for telling others that your son has autism, it depends on how they handle it and whether or not it would benefit your child.

Good luck!

Do you have someone – 'pro' or not – who can help you talk through your decision process each time this comes up? What I'm suggesting is a kind of decision-tree – starting with his age and the kind of program. Are the people familiar? Has he had recent new behavior issues? Can you map out a path with steps for increasing his self-awareness for next few years?

You are doing these things already, but all by yourself and it is causing you stress. Writing it down – allowing for cross-outs – might help, too.

I know exactly what you mean. And my steering wheel has seen a lot too.

@Karianna – He still gives excuses that sometimes don't add up. It might be the control issue in me speaking, but I find that if I don't say something, when it finally DOES come to my attention he's got the teacher believing he can't do something when he so clearly can, he just doesn't want to. He can be pretty crafty like that.

@ The Gang's Momma, Julie, & Trish – Just knowing that I'm not the only one who has dealt with this or thinks this way makes it better. Trust me. So thank you so very much.

@Amazing_Grace – I'm glad I told my son too, but in "real time" situations he may be so sensory overloaded/stimulated or just concentrating on going where he needs to go that he forgets to tell those people those important things.

@Barbara – I talk those things over with the Hubs probably more often than he would like . The issue becomes that each Summer this camp he goes to changes staff at an alarming rate, so I feel compelled to go and let them know what is what. I know I need to do it, but sometimes I can't help but think I'm showing them his weakness before he can show them his strengths. However, any other time I would not say something is usually when I get a call. So it's a fine line, I guess .

@Stimey – Thank you. Your steering wheel and mine I hope will keep our secret.

My child doesn't have autism, but I struggle with the same issues with her developmental delay. It can be invisible at times, but not at others. ((hugs)) to you! It helps me to know that others feel as I do.

A real delema!

My older daughter has PDD-NOS. I've always said she's "on the edge of normal", LOL, which makes it really hard to decide who I should tell. Her biggest behavioral challenge is that she cries easily, which can escalate into an hour long bout of tears and irrationality. Sigh. Lately I haven't been telling — her gymnastics teacher, her day camp counselors, etc. And she's been doing OK, I guess. People just don't understand and have so many preconceived notions about autism, it's not worth it.

I also haven't told her yet. She knows "her brain is different" since she takes "stop crying medicine". Her sister has severe autism (and Down syndrome), and that is what she knows about autism. So I don't want to freak her out by telling her she also has a form of autism.

same here! my 9yr old son knows he's an Aspie, but i agree – i don't think he'd b able to "explain" 4 himself if the situation was too overwhelming…i'm 4ever debating whether i should tell people or not…like Ecki said, sometimes it's not even worth it because of preconceived notions…but i usually do end up giving them the heads up…i guess it's because i don't want them 2 think he's annoying or unruly…but i totally agree with it being a fine line – i definitely don't want 2 "show them his weakness before he can show them his strengths"!

My son has high functioning autism, and I have this same struggle. Sometimes I'll tell people he's a wanderer or that he needs extra time or help or just that he's sensory. I like to try to give him a chance first before the prejudices set in. Often, it's just "He has some special needs." But sometimes you have to tell- most often I'll do this if it helps us, like in an ER.

I also have a daughter who's mildly aspie. She's getting the therapies she needs, but she's never heard that word, despite being in middle school. Like Ecki, I find it hard to say anything to her because she associates all of autism with her brother.

As I read this, I could imagine myself having your boy over for a play date, and thinking, "Oh, good stuff to know! Are there any particular triggers? Any sensory things to watch for? Food allergies?" I do the same thing – my boy is a wonderful, sweet kid, a real charmer, and his Aspergers makes him sometimes look … different. I want everyone to give him the best chance he can have, so he can show them the boy I know, and they can enjoy being with him (and he with them). Perfectly reasonable to me…

It's like you read my mind. I struggle with this all the time too. My son is not high functioning, so I really have to tell people for basic safety reasons, but I can sometimes feel people wanting to roll thier eyes. This is a beautiful post.

My son is also autistic and I too struggle with this because so many times when I have told someone ,I get the look.I know some of you know what I'm talking about and I know either before the day is over I will be called to pick him up or at the end of the day when I go get him, I'll be taken to the side and be told every little thing that he did that they didn't like.