Proposed Changes in the Definition of Autism?

Avatar for Cmmelissa
iVillage Member
Registered: 11-13-2008
Proposed Changes in the Definition of Autism?
13
Fri, 01-20-2012 - 7:26pm

Have you heard about the proposed changes in the definition of autism?

Pages

iVillage Member
Registered: 10-23-2003
Sat, 01-21-2012 - 5:42pm

This really makes me nervious. My son has pddnos. He is in special ed at school. There is no way right now he could handle being in a regular ed class room. Also I am worried about him as an adult. He will need help as an adult getting a job.

Lilypie 6th to 18th Ticker Lilypie 6th to 18th Ticker
iVillage Member
Registered: 03-03-2005
Sun, 01-22-2012 - 2:08pm

This worries me.

Avatar for Cmmelissa
iVillage Member
Registered: 11-13-2008
Mon, 01-23-2012 - 10:40am
It's still in the preliminary mode, the American Psychiatric Association is working on updating the Diagnostic and Statistical Manual of Mental Disorders so it is reviewing the proposed changes.

What really bothers me is the quote:

“The proposed changes would put an end to the autism epidemic,” said Dr. Fred R. Volkmar, director of the Child Study Center at Yale University School of Medicine and an author of the new analysis. “We would nip it in the bud — think of it that way.”

How are they really ending the epidemic other than reducing the number that get "officially diagnosed"? There will still be children on the spectrum that will need help, but might not get it under these changes. This doesn't seem to be progress to me at all.

iVillage Member
Registered: 10-23-2003
Mon, 01-23-2012 - 10:58am

I don't like that either. It sounds like it's being done to make people feel better. Kind of a see there wasn't an epidemic after all, everyone can calm down now. Those kids will still be there but they will be labeled as troubled children and weird. They will be kicked into behavioral classes and labeled as ed possibly. I am very upset about this knee jerk reaction. I pray that the right changes are made and kids and adults will still be able to receive the services they need. Dawn

Lilypie 6th to 18th Ticker Lilypie 6th to 18th Ticker
iVillage Member
Registered: 03-03-2005
Mon, 01-23-2012 - 11:19am

That is disturbing.

Avatar for skystrider
iVillage Member
Registered: 06-14-1999
Mon, 01-23-2012 - 2:14pm

I guess I better dust off my homeschooling books, because it's already been well established that my children can't make it in a classroom without autism support.

Avatar for Cmmelissa
iVillage Member
Registered: 11-13-2008
Mon, 01-23-2012 - 3:49pm

iVillage Member
Registered: 02-17-2002
Wed, 01-25-2012 - 11:11am

It seems to me like what they're doing is that if they can't figure out why the rates are skyrocketing and do something about it, they'll just change the criteria and get the numbers down by excluding people instead. Problem is that changing the label on all those kids doesn't change their needs. All those kids are going to get screwed out of badly needed services in the process. It is so backwards! Two of my kids have PDD-NOS and according to this article, 85% of kids with that diagnosis would not longer be eligible for services. That terrifies me. I don't know if by "services" they mean special education services and IEPs in the school system - both of my kids have IEPs and receive various services at school and have benefitted tremendously from them. According to our dev. ped., at age 9, if the kids don't have a specific dx (autism), the school can no longer have them on an IEP. My oldest turns 9 in February - he would flounder in school without the accommodations and services he receives through his IEP. We have worked so hard to give him every opportunity to be successful and reach his maximum potential - it kills me to think that could all be taken away because of this new definition. He hasn't changed but because these people feel the need to give the illusion that the autism epidemic is under control, his services will. Infuriating!

We had an appointment with our dev. ped. this week and I talked to him about this briefly. He said my concern is certainly justified as my kids could very well be excluded and left behind. He said that he doesn't have any inside knowledge of the new criteria - that he knows about as much as anybody else through the news - but that he has heard that not as many kids will be excluded as what the media is reporting. He also said there was a rift between the two lead people working on this and speculated that perhaps one thinks the new criteria is too exclusive. He said the reasoning for changing it as that it the definition is too broad for researchers to be able to meaningfully collect and analyze data. To me it seems then like they need to just split them out more, not lump them all together. If they wanted to exclude aspergers and PDD-NOS from the autism umbrella but still offer services I'd be fine with that. I couldn't care less what the label is, my concern is that my kids' NEEDS are being met. Unfortunately without the label, they may not get the help they need.

iVillage Member
Registered: 01-07-2008
Sat, 01-28-2012 - 10:14am

I'd be very worried about this. It took us *ages* to get the right diagnosis because Euan was not 'classically' autistic, but once we got it it was so clear that it was the correct one: and having been around children with classic autism and Aspergers, there are key differences, and they need different kinds of support. I'd be really worried if we lost the distinctions, and even more so if kids on the 'lower' end lost the entitlement to support. I have just had a brilliant round of teachers interviews *because* the school have finally put supports and accomodations in place, and Euan is academically in the top 5% of everything. If they withdrew those supports, he'd plummet to the bottom of the class and any hope of academic success would be dashed. Who, exactly, would that help? Not the teachers and aides who have learned a lot by supporting him, not his family, and certainly not him. But some overpaid arrogant psychology researcher will get a big research grant and paper in his name and kudos for stopping the 'epidemic'. Do these people even consider the social and moral implications of what they do or are they only concerned with their own glory??

Kirsty

mum to Euan (13, Aspergers Sydrome) Rohan (8, NT) and Maeve (6, NT)

"My definition of housework is to sweep the room with a glance"


Follow my blog on http://mumsnet.com/blogs/kirsteinr/


 

iVillage Member
Registered: 04-15-2004
Sat, 01-28-2012 - 12:27pm

i am very concerned.

Pages