To Tell or not to tell

This is something I’ve been strugging with since before we got our diagnosis.  I, by nature, am a talker.  I also, well, umm, I just hate to see people be unfairly accused.  World Autism Awareness Day and Autism Awareness month have had me thinking about this more than usual.  So here’s a few questions to think about while I tell you my two stories.  How do you decide which people, non friends, you tell that your child has Autism, Aspergers or ADHD (or anything else that may not be obvious but affects them in situations)?  Are there situations where you always make people ‘aware’?

Story #1:  Last Monday when we were at the park for the Easter Egg hunt (yes it was an after Easter event), J had some hard times on the playground.  I wasn’t right there when it happened, but it seems that there was some grabbing and pushing.  What ever happened, there was a mom trying to get his attention, and there was a girl crying because he ‘grabbed her.’  She didn’t seem to be physically hurt, but just feelings hurt.  It took me a few minutes to get him off the playground structure.  When I did, he didn’t want to apologize so we moved to a bench for time out and a talk.  (big side note, it is so much easier to be at a playground where all or atleast the majority of the moms know us and understand.  When the majority is strangers, he usually has the most social awkwardness, issues, outbursts, etc.  and then I feel like we are on display.)  He really didn’t want to apologize, and he REALLY didn’t want to sit on the bench.  Of course I couldn’t let him get up without him managing some sort of social graces.  Several of the ‘stranger’ moms were occasionally shooting daggers.  Eventually he did apologize with an awkward hug and mumbles.  all of his apologies come with hugs, which sometimes freaks out small children, but I will not discourage him of his few kind actions towards peers.  So the inner mind talk went like this, “should I just tell this little girl’s mom that I am sorry it happened, I didn’t see the beginning but sometimes things set him off and he reacts inappropriately because he has autism.  Or should I just let these strangers who I will probably never see again think that he is an unruly child who needs some discipline and to be banned from all parks everywhere?”  I sucked it up and went with the 2nd option.

Story #2: Today we were at the pool.  I took Little J last week but this was J’s first time this year.  He was doing pretty good, but occasionally he would back up on the “shore” and run into the water.  (it is a beach style/zero depth entry)  The lifeguard saw him do this and blew his whistle.  the normal response to the whistle is that most of the kids will look in his direction and he will give a warning to the offender or they just yell “WALK!” after blowing the whistle and the offender knows it was them and gives some eye contact.  Today’s outing was at a pool different from last year.  Last year we swam in a kiddie pool at the base pool.  It was not monitored by lifeguards.  So when J ran and the whistle blew, he did not acknowledge it.  I gave J the sign for “walk” and he obeyed.  In large groups, I have found signing to be a huge help.  We were along the edge and J was crawling through the water and the lifeguard was walking along the side trying to get his attention.  J was completely oblivious to him calling out to him.  In general J doesn’t even “hear” his own name unless it is from someone familiar, let alone a stranger saying “hey.”  So when they both got to where me and my friend were sitting, I let the lifeguard know that I had already told him to walk with the sign.  I then stutteringly clarified that he was not deaf but autistic and sometimes couldn’t respond to verbal commands but did well with signs.  I also showed the sign to the lifeguard.

I need to make sure I go over the pool rules clearly with him the next time.  But I also didn’t want a person in an authority position to misunderstand his defiant appearance and send us home.  Also this is a pool that offers adaptive therapies for all types of different abilities.  I felt like the lifeguard could handle the truth. *sigh*  but then my inner conversation took over and I was wondering if I had too many justifications.

Are we justified in telling strangers that our kids are different?  Do your kids even know they are different?  J may have heard me say this word, but we have never discussed with him his diagnosis.  In fact the other day at the psychiatrist’s office, I was describing a new stim b/c he asked if there were any new side effects to the meds and he then said, “Well that is most likely a stim because of the A-U-T-I-S-M”  Yes he spelled it.

So help me out here.  Most have you have been on this road longer than myself.  Some days I feel like I am trying to excuse his behavior when I feel the urge to tell people.  He looks like a typical 5 year old, he has the vocabulary of one, sometimes he talks like one, but he does NOT relate to peers or strangers like one.  So when he acts Atypical I am torn.  Is it better to make people ‘aware’ of the individuals with autism or just aware of autism in general?

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7 comments on “To Tell or not to tell

  1. Pingback: ADHD Report» Blog Archive » To Tell or not to tell

  2. I have to say that I struggle with this one as well. My son is now 8 and it is less and less easy to explain away some fo his behavior as being “just a little kid”. So I have to play it by ear. Sometimes I feel the urge to be an advocate for autism and build awareness, sometimes I want to hide under a rock, sometimes I plead for compassion. I am getting better at picking our battles – leaving it alone if I think we cannot improve the situation. I want to give my son a model that he can take with him through life, so I don’t want to teach him to be a “victim” of Autism or that he isn’t responsible for his actions, but I also want him to stand up for himself and to deal with the responsibility that comes with being part of society. Sigh – if you find a good answer to this one, please let me know 🙂

  3. I was all set to comment and then I read the comment from lookingforlifeshumor. I’m gonna say what she said. It’s true, I struggle with this all the time, but I’m getting better at picking our battles, knowing when to speak up and when to find myself a nice big rock to hide under (not really, but you know what I mean). My son knows he has differences, but we haven’t given it a name. We haven’t labeled it for him. He is, after all, only six. I don’t ever want him to take his challenges and use them as an excuse for bad behavior, so he has to understand that in some things he just has to work harder or try harder than other kids. And for whatever it’s worth, I would have done the same thing at the pool and the playground. Though I might have been tempted to find a way to communicate with those other moms that sometimes there is more going on than what meets the eye.

  4. I guess we have always told on an as needed basis. I am always debating whether or not to say something. A lot of it depends on the day and how M is doing too. If the person is going to be caring for M for any length of time I will always tell them. I know in that situation I would be upset if another parent did not tell me. If we are out in public I usually don’t say anything or explain anything.

  5. Yes it depends how i feel at the time. Which i know isnt much help for you.
    It is a lot easier on this score now my son is much older as his autism is so obvious.

  6. As a mom whos son wasn’t “diagnosed” until the age of 12 with Aspergers I went through years of not even having that option. I was many times told to “get control” of my son even by doctors. He has always had social issues and still does. There are times now at 17 that he totally says things that are inappropriate in front of strangers. He is honest and outspoken and really has no idea he is saying something hurtful or down right rude. I know how he feels about the “label” and so we choose to not tell any strangers. It took me years of avoiding playgrounds and other social situations to realize that I wasn’t helping him by “keeping him sheltered” I was helping me, I was trying to avoid the embarrassment etc. I know now that he is and has always been a great loving kid that just happens to move to the beat of a different drummer and by avoiding these social groups I did him a great disservice. So now when I think if I had had a “diagnosis” would I have used it to explain his behavior? I do think in some difficult situations it would have helped but mostly it would have helped me. It is hard to appear to others as a “bad” mom who doesn’t have control of her kid. But really if I’ll never see these people again then I wouldn’t make excuses especially in front of him. I want him to know that his behavior is not okay but sometimes the opions of others really isn’t important in the overall scheme of things.

  7. Sometimes I say, sometimes I don’t. Adrian is four years old, his symptoms that generally could be noticed in public are, yelling, hand flapping, not talking, and he doesn’t understand taking turns and such at the park.
    I struggle with it too though. As an example, we were at the store and the cashier was talking away to Adrian and asked him how old he was. He answered by flapping and yelling and Sanura stepped in and said “he’s four” I thought that was so sweet of her.
    It’s a difficult thing, if some other parents were ‘shooting me daggers’ over his behavior I would probably tell them what was up so they would feel bad and judgemental because they should feel bad! That’s just me though. It’s a tough one!

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