feeling a little guilty about something

iVillage Member
Registered: 04-11-2003
feeling a little guilty about something
6
Mon, 04-03-2006 - 5:30pm

Ok, you remember the support group I belong to did a newspaper interview about ASD. The kids' picture will be in the paper too. We asked Kyle if this was ok with him. We thought at his age, 11yrs, we need his permision to publicly speak of his diagnosis. He was completely fine with it, btw. Well the newspaper lady wants to do the article in two parts. The first part will be about our support group and general autism awareness. But for the second part she wants to pick the lowest functioning child and the highest functioning child (Kyle) and give specific details about their issues. I think she wants to sort of compare and contrast them too. She wants to put in things like Kyle didn't talk till 2yrs and didn't say Momma till 3, couldn't sleep without melatonin till he was 10yrs old, can't ride a bike, had no friends, takes 20 supplements a day, ect. Well, dh & I said no, we aren't comfortable with that. We feel like its too personal and could cause social ramifications. I feel guilty though because our community really needs autism awareness. Anyway, I hope we're doing the right thing.

Samantha

Samantha
iVillage Member
Registered: 10-03-2004
Mon, 04-03-2006 - 6:07pm

Dear Samantha,

This is a tricky area, because of the need to educate the public about autism, but there also is quality of life and rights of our children to consider as well.

I understand your thoughts and applaud you for them. Our children are brave and up against so many odds, and socially they have such strong challenges. I am actually careful about who I tell about my son's autism and details, because I do feel he has a right to privacy and also, as he gets older, I feel he should have the right to make the decision about who knows all about him and his challenges and who doesn't.

I don't think autism should be kept a secret, but too many personal details out in the general uneducated public can also be ammunition for bullying and being ostracized (although bullies can find ammunition without our help, right?). There is a balance that needs to be struck here.

Anyways, you and dh went with your gut instincts and what feels right for you and your family, and that is the "right" thing to do, IMHO.

yours,

Sara
ilovemalcolm

iVillage Member
Registered: 01-15-2006
Mon, 04-03-2006 - 6:08pm

Samantha,

Don't feel guilty about you decision. It is personal information, it is your right to decide to share it or not. Is there anyway this newspaper can do the second part without that information..maybe in generalities as opposed to comparing specific personal traits? By agreeing to do the first part of the article you are creating awareness, to every person who reads it.

iVillage Member
Registered: 03-26-2003
Tue, 04-04-2006 - 12:11am

Don't feel guilty. I think you are doing the right thing. I think it would be completely innappropriate for them to do that to 2 children. Think of how the less able childs parents feel as well.

I think that autism awareness can be done without segregating the more able from less able and focussing on thier weaknesses.

Now if they wanted to focus on the positives and how far the kids have come, how hard they have worked and things they should be proud of, that may be different all together.

I think you can help autism awareness without subjecting your son to something that would be detrimental to him.

Renee

Photobucket
iVillage Member
Registered: 06-09-2005
Tue, 04-04-2006 - 8:11am

I think you're doing the right thing, that does sound a little too personal.

I don't know..that whole higher functioning/lower functioning comparison rubbed me the wrong way. It seems kind of cruel for the lower func kid and their family. I'm sure the article won't label each kid, but still.

Autism awareness is important, but I think the article could be restructured to speak in more general terms about the struggles of our kids, then highlight how far they've come. Rather than get into specifics about any kids, since the audience is basically any one who reads the paper. Just my opinion, though.

Kate

iVillage Member
Registered: 04-11-2003
Tue, 04-04-2006 - 9:32am

Actually the parents of the lower functioning child are all for it. Their child has sever autism. He's 6 and non-verbal (except for saying Hi once when prompted) and has bad sensory issues.

Thanks for all of your support. I agree it just doesn't sit right with me. The lady doing the article really means well though. I know her intentions are in the right place.

Samantha

Samantha
iVillage Member
Registered: 03-26-2003
Tue, 04-04-2006 - 9:39am

Don't feel guilty......you and your DH made the best decision for your family.....it seems too personal to me as well.

(((HUGS))),
Christie