Disclosure again

I started responding to a comment and my comment became so long that I decided to make it a new post. 

Acollage wrote:

I’m so glad the playdate went well! Can I ask, did the mother know your son has autism? I’ve struggled with this. My son is invited to just a few houses, and I mean few as in two — people are judgmental, it’s heartbreaking.

The simple answer is, no.  I never told her that G probably has autism.  The long answer is that I really struggled with what to do.  G needs to have these social opportunities and experiences.  Yet I was very worried about sending him off with an adult that was unprepared for the worst, should it occur.  That seemed negligent as a parent.  I discussed it with our autism specialist/caseworker and she advised that it wasn’t necessary to go into detail but to mention that G can get overwhelmed in new situations.

A large factor in deciding what to do is that G’s friend was in his preschool class last year, and was specifically placed in G’s kindergarten class to make transitioning easier for G.  G had a bit of a reputation with the preschool mom set because of his behavior problems, and I’ve had conversations with her last year where she would tell me how smart G was and in return I’d say something like “we’re so proud of how smart he is, but sometimes wish he was as well behaved as your son.”  So I knew for sure that she had an idea that G could be challenging.  When she picked G up for the playdate I made sure she knew that this was G’s first parent-unattended playdate.  I told her that we’ve been working with the school to develop G’s social skills and that if it looked like G was having any trouble, she should call me.  I used “working with the school” and “social skills” to convey that these were issues bigger than standard 5 year old behavior problems.

It was really difficult to figure out what to do in this situation.  Like I said earlier, it is really important for G to be able to practice his social skills in new situations.  But given the intensity of his meltdown when he got home, I realize we were lucky things worked out the way they did.  I am afraid to use the ‘A’ word because we don’t have an actual diagnosis yet.  It is pretty obvious to me that G has some flavor of autism and is being treated like that is true when it comes to his IEP and accommodations.  But I have this tiny fear that we’ll finally get his ados evaluation done and they’ll tell me it is something different.  I am afraid of being the mom who cried autism.  I think that if we had our official label, this situation would have been easier.  I could have just said that Griff would love to come over and play, but she should know he has Aspergers and can have trouble with new situations.  It’s another example of how important a label can be.

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Published in: on September 16, 2008 at 2:33 am  Comments (5)  

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5 CommentsLeave a comment

  1. Hey, where’d you go? I’m waiting for more updates on your boy… 🙂

  2. I’m slacking! lol Thanks for the poke, it got me writing again.

  3. Labels labels… sigh. My son just got one and in some ways it has helped. I now know what I am facing. & I can now be a member of a specfic community, a cause, and get support. although you know what, the online autism advocacy community embraced & supported me even without a label!!
    It has been freeing, this label, because I now have an explanation for people when he has a meltdown in public. Not that it is any of their business, but they can be so judgemental and I want them to know he is not just a brat.

    But the label can also be restrictive. I too struggle with disclosure. who needs to know? I am not ashamed, talk about it freely. people need to understand his challenges. Then again, I don’t want to deny my son the opportunity to be viewed as “normal”. I don’t want to taint people’s opinions of him. who knows how they will handle this information that I give them? will they sell him short, see him as broken? there is so much misconception and fear out there. will it limit his social opportunities in the future?
    I am still working it all out!

  4. I am commenting again just so I can be LOGGED in this time…

    and also to say that I am still wrestling with the disclosure issue today. I think i will always struggle with it. How do we know who needs to know and when?

  5. I am commenting again just so I can be LOGGED in this time…

    Fantastic! I’m going to add you to my blogroll, if you don’t mind. Nice to ‘meet’ you, Goldie.


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