Log In | Register
Proposed changes in the definition of autism would sharply reduce the skyrocketing rate at which the disorder is diagnosed and might make it harder for many people who would no longer meet the criteria to get health, educational and social services, a new analysis suggests.
New Definition of Autism May Exclude Many, Study Suggests - NYTimes.com
Seeded on Fri Jan 20, 2012 4:56 PM EST
Article Source: The New York Times
- Enjoy this article? Help vote it up the 'Vine.
- Public Discussion (10)
Two points that disturb me.
The article's tone seems to imply the reason they are changing the definition is to stop some children from being able to access services. By narrowing the definition, that's what they would be doing. Why should psychiatrists use that as their motivation? Aren't they supposed to be patient advocates and not government advocates?
The articles says they are eliminating the diagnosis for Asperger's and “pervasive developmental disorder, not otherwise specified,” also known as P.D.D.-N.O.S. Eliminating the diagnosis does not make the symptoms or problems go away, so what do the parents of these children do? There is no indication they will fall under another category of diagnosis.
The psychiatrists’ association is wrestling with one of the most agonizing questions in mental health — where to draw the line between unusual and abnormal — and its decisions are sure to be wrenching for some families. At a time when school budgets for special education are stretched, the new diagnosis could herald more pitched battles. Tens of thousands of people receive state-backed services to help offset the disorders’ disabling effects, which include sometimes severe learning and social problems, and the diagnosis is in many ways central to their lives. Close networks of parents have bonded over common experiences with children; and the children, too, may grow to find a sense of their own identity in their struggle with the disorder.
The changes would narrow the diagnosis so much that it could effectively end the autism surge, said Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and an author of the new analysis of the proposal. “We would nip it in the bud.”
Experts working for the Psychiatric Association on the manual’s new definition — a group from which Dr. Volkmar resigned early on — strongly disagree about the proposed changes’ impact. “I don’t know how they’re getting those numbers,” Catherine Lord, a member of the task force working on the diagnosis, said about Dr. Volkmar’s report.
#1 - Fri Jan 20, 2012 5:03 PM ESTFrom what my own psychiatrist explained to me, they're trying to narrow down the diagnosis, not exclude. They opened up the diagnosis far too much last time it was defined and left a lot up to interpretation. It covered a lot more kids, but led to a lot more misdiagnosis overlap (aka, a kid with only a speech problem getting fully labeled under the autism spectrum). Autism labels can follow a kid around for a long time and complicate things in the future, especially if they're high functioning.
There are also some rumblings that this change is partly because parents were complaining of "over-diagnosis" in the autism spectrum. That I certainly can believe. I worked shortly for a company that did autism therapy and many, many parents resisted it.
The whole thing may be a combo of both and other areas (like schools) are just seeing the savings passing their way....and then the media reports it because it's semi-sensational.
*sigh* Psychiatry is complicated. I'm a functioning bipolar and you'd be surprised at all the crap I get. I can't imagine autism.
It would not bother me if they were providing another category that would still keep these kids in the loop, but they're not. They're simply excluding them.
As to "problems following them around," how can that happen if they don't reveal their diagnosis? HIPPA is in full effect.
- 1 vote
It would not bother me if they were providing another category that would still keep these kids in the loop, but they're not. They're simply excluding them.
It doesn't mean that they don't fall into another category already or will stay out of the loop. (Well, they shouldn't anyway. That's where it'll have to be seen.) It's part of the problem when testing something outside of the physical realm. People will complain about over and under diagnosing and the doctors have to sort it out someway. Of course, the impact wont be known for a while, since the kids most affected will be on the boarder. But the line does have to be drawn somewhere and that's the gut wrenching part for parents.
As to "problems following them around," how can that happen if they don't reveal their diagnosis? HIPPA is in full effect.
It's amazing where it comes out. Any future insurance company will obviously know about it and that can have an impact if the child ever needs to buy it themselves. And if they need any accommodations at school, work, it can come out there, HIPPA or not.
If they need help at school, then they would be voluntarily providing it. That possibility is exactly why I'm bothered by these changes. If they are removed from the DSM, exactly how are they going to qualify for the extra help? That need won't just disappear.
- 1 vote
I don't disagree with you there and that is my concern. Honestly. I'm seeing two totally separete issues: the doctors changing the diagnosis criteria and the autism support system.
I can totally understand the doctors changing the criteria. I'm surprised it took them this long, actually.
BUT,
I'm worried about what will happen to the support systems. The autism diagnosis did wonders for school support systems for kids falling through cracks. The response was wonderful, or at least good in most places. With the diagnosis gone, two things will happen: kids will either fit into another diagnosis or they'll fall through the cracks. And that's what worries me: that schools are just going to use this as an excuse to cut back on special education. In a perfect world, they wouldn't use a diagnosis as criteria to these services. But we don't have the perfect world.
So, in a very long worded way, I completely agree with you and your concerns on how the changes will affect the extra help and special education departments. I'm just more understanding on why these changes are originally taking place.
- 1 vote
As I said, it wouldn't bother me if they were offering an alternative name for the diagnosis. I know one child who they couldn't figure out what was wrong but they knew something was, so they put him in PDD, NOS. Six years later, they decided he had Asperger's. So what would happen to a child like him if they eliminate both of those designations? He'd just fall through the cracks, or he'd be crammed into something else that doesn't really fit?
- 1 vote
He'd just fall through the cracks, or he'd be crammed into something else that doesn't really fit?
I don't know what would happen to that child because I don't know the specifics. I don't know what treatments or symptoms were being displayed. A diagnosis is nothing more then a worded criteria. If I didn't have a diagnosis of bipolar, but I had symptoms of depression, a doctor would still treat the depression. Ideally, we shouldn't be using only the diagnosis as a criteria for help. We should be using symptoms or behaviors as criteria. Offering an alternative name doesn't solve the problem of where to draw the lines.
His disabilities were considered complex because they were wide ranged, but then when they diagnosed Asperger's, all of them were part of that syndrome, so suddenly they could make sense of them and how to help him best. He's doing well today, but if neither of those options were available, there's no way they could have coordinated the various problems under one umbrella.
Trying to deal with them as this and that and the other didn't work for him. In fact, he would have fallen under the "over diagnosed" label until they got the right diagnosis.
- 1 vote
I'm sorry, there's no way psychiatry is ever going to get everything right and there always will be someone who slips through the cracks. Always, because lines will always be drawn for where "normal" starts and "abnormal" ends.
I don't have all the answers. I can only try, as a person, to see where both sides are coming from.
The DSM itself is for a very specific reason: a concise diagnostic criteria for mental illnesses, provides clear delineations of what mental disorders are so that they can be studied at a steady, conformed rate. It's so medical professionals who are studying things like, say autism, can't just say autism. Their studies have to meet the agreed upon conditions. When the lines are too far drawn or have too many sub-sets, it muddles a lot in the science. Which is why the criteria is being changed. It's not much comfort for parents or children who get lost in the mix, but it was never meant to be the sole arbitrator for things like treatments- only a guide to appropriate treatments and issues. More or less, I think that needs to be focused on more then anything else. We're such a diagnosis-treat society, with a one-treatment-fits-every-diagnosed-child-society, that we're having a hard time seeing the whole picture and children are falling through the cracks. Changing the DSM isn't going to fix that, one way or the other.
- 1 vote
You're in Easy Mode. If you prefer, you can use XHTML Mode instead. |
As a new user, you may notice a few temporary content restrictions. Click here for more info.
