Monday, November 05, 2007

This piece is turning into a forum for parents to tell the "outside" world how well or poorly their pediatrician, neurologist, dev. ped and other docs treated/diagnosed their kids on the spectrum. The comments at HuffPo are blowing me away.

If YOU are the parent of a child(ren) with autism PLEASE do go over to HuffPo, sign up so you can comment and tell the world your story about how the docs who are now supposed to diagnose kids after years of missing them treated you and yours.

You can use an screen name and NO ONE knows who you are. There is NO cheating on HuffPo. I get no info on who is commenting at all. Just what you use as your screen name, so don't worry about being "outed."

And I'm asking you to forward this request to every autism blog you visit. No matter what "flavor." ALL of our kids deserve better treatment by the docs. And by treatment I mean RESPECT, not literal medical treatment. That's another fine kettle of fish.

THANK YOU! KIM


My latest on Huffington Post, "The Boys on the Bus."

http://tinyurl.com/2uv622

19 comments:

Stephen Parrish said...

Another great HuffPo piece in a long line of great HuffPo pieces. Keep 'em coming, Kim.

Michelle O'Neil said...

Good work Kim! Now go put your jeans on.

Kim Rossi Stagliano said...

Thanks. Michelle. No school today - voting day. I need the kids home to vote for a dog catcher???? Sigh.

kristen spina said...

Kim, too lazy this morning to log in for a Huffington account so I will comment here.

My pediatrician told me, "It's obvious he loves people, so there's no way he's autistic."

And I believed him. For about 6 months. And then all hell broke lose and the boy who loves people (yes, he does, he really does!!!) began to slip away.

I've never understood why our pediatricians aren't on the front lines with this diagnosis. They are, in fact, a roadblock.

Essential Amy said...

When I first heard about these new screeings, I thought it was kind of a joke, most of the pediatricians I have been to can't see autism when it's staring them right in the face, how are they going to diagnose it before age two? I remember telling my ped, after my son had an actual dx, about it and she said, 'well he seems fine to me, he's looking me in the eyes right now'. After that, I really never trusted them all that much. I consider myself fortunate that I obtained a dx without even involving my pediatrician. But all snarkiness aside, I do think it's a step in the right direction, even though it saddens me to think about the deluge of dxs that are going to descend upon us.

Kim Rossi Stagliano said...

Kristen, please do post that comment at HuffPo if you can take a moment. Its SO important for people to realize what we have faced and how ludicrous it is to expect these same docs to now be "experts." Thank you.

kristen spina said...

Okay, Kim, for you. I just signed up for an account at Huff. When it's activated, I'll post. You're right, of course, to push me.

Ironically we have our annual check up this afternoon at the pediatrician. Just another opportunity for them to tell me there's nothing wrong with my son. Sigh.

Kim Rossi Stagliano said...

Thank you, Kristen. Bonbon, it's a two edged sword. I mean, how about if every woman got a mammogram, and when there was a spot on it the doc said, "Not cancer" because he didn't know better. Or, "there's cancer. now go home, get some counseling and just enjoy your family." You'd freak, right? That's about what the peds have done to us based on their TRAINING. How are they going to undo all of that overnight?

Drama Mama said...

Wonderful. My sister, who is an EXPERT in the field of Child Development, told me that the epidemic had nothing to do with vaccines the other day. Maybe the environment. Better diagnois. Wasn't sure that there WAS an epidemic.

I'm sending her your piece.

Kim Rossi Stagliano said...

Drama, no one has EVER studied the cumulative effect of 40+ vaccines by age 6. There is "no evidence of harm" but that means nothing outside of the epidemiology world. There is no evidence that if an astronaut removes his helmet while standing on the moon that he will die is there? Did Neil Armstrong flip off his helmet and wave to the camera? Send the piece far and wide. I'm tired or people telling me there's no autism epidemic. Damn tired.

KAL said...

Great post, Kim. I felt like I was reading about MY boys on the bus.

Our pediatrician said, in the face of our early concern, "Oh they're twins and they're boys. That's why they're not talking." At least we were fortunate enough to have other professionals in our lives addressing their delays. I don't know if the new screenings will help much but I agree with bonbon, it's a step in the right direction.

Laura said...

I'll head over there soon!

I met a friend from high school for lunch when she came to town a few weeks ago. We ate with the lady she was staying with (a friend of her husband's). Anyway, as we were eating, I brought up the autism thing, in case the lady was wondering about any odd behaviors Hutton showed. He is pretty good at restaurants, but just in case. She told me how great he was, and then said the whole, "I think it's just better diagnosis!" Uggh. I was polite as I could be, knowing this was someone my high school friend's husband was close to (like a second mom) and pointed out that I could count on one finger the number of kids I knew growing up with Autism, and that one of the baby playgroups I was in when Hutton was a baby now had three kids out of ten who ended up having autism and that seemed way too high to have gone unnoticed if it was the case when we were growing up.

I also had a pediatrician who didn't see it. Another late talker here. I got the name of a neurologist 40 miles away who diagnosed my friend's son. You know, because the autism center had a year long wait list, and we needed a diagnosis to get early intervention. Sigh. Good times. No problems I can see in any of that. Sarcasm thick.

Leightongirl said...

Your post was brilliant. Thank you.

Essential Amy said...

It totally is a double edged sword. I just find so many inconsistencies in the medical community, so little support for parents. I hope that this will bring about positive change and get more kids the help they need. It's of epidemic proportions at this point, so they have no choice but to change their approach.

m said...
This comment has been removed by the author.
Anonymous said...

thankfully we have been blessed with great pro's.

Anonymous said...

Sorry about short comment, broken wrist, right, in plaster to elbow!

Yes, got it chasing daughter no 2. Yes very embarrassing, yes still held my death grip on daughter no 2!

Michelle O'Neil said...

Oh....and......after being blown off by three pediatricians, when an OT finally gave me the beginnings of a diagnosis, "sensory integration dysfuntion," the neurodevelopmental guy at Kennedy Keriger we saw next got all put out, that an "OT" would have the nerve to diagnose. BTW, he missed the signs and symptoms of Asperger's, big time, because Riley was verbal, and smart.

"Just a little clumsy" was all he gave me. Blew off my reported rip-roaring non-stop tantrums because she didn't display any in his quiet calm office with lots of toys to entertain her.

Not that I'm bitter.

Irene said...

Amazing Kim! Thanks for posting here to go check it out. I will encourage my friend to get to HuffPo. Her ped. earlier this year, yes 2007, told her "to wait and see" regarding her now 3 year old son...

"You know, we really can't tell about Autism much until kids start school and we really get to see them along side other kids their age. I think we should just keep an eye on things and see how it goes."

...who, by the way, is in a pre-school environment and this is part of why she was concerned!

grrrrrr!