Proposed autism definition changes

[Stitch]

I know others here have loved ones or know someone with autism or Asperger's.

The American Psychological Association is proposing a stricter definition of what autism is, with ramifications for those who receive government services. One of my sons is high-functioning within the autism spectrum disorder catergory. I don't think this would affect him as he is due to receive speech therapy at school, but doesn't receive special education services besides that.


http://www.nytimes.com/2012/01/20/health/research/new-autism-definition-would-exclude-many-study-suggests.html?_r=1&hp

 

[Baron Scicluna]

Utterly, ****ing ridiculous.

I also have a high-functioning Asperger's kid who receives some services, but also falls through the cracks with others. Seems like this study is just designed to say, "We're diagnosing too many kids with this, let's see how we can cut the number."

They want to cut the number in half. HALF. Not every autistic kid fits their definition of what it is. Yet, they seem quite willing in being able to drop kids and proclaim them normal. Even when they're not.

 

[DanielSimpsonDay]

I fail to see how this helps in any way. What benefit is there from excluding children presently defined as "high-functioning" from early intervention? My son is high-functioning and he would not be where he is today without those services. This is all semantic nonsense. Call it high-functioning autism spectrum disorder, Babbitt's Syndrome or whatever the hell you want. While the classification of the root cause may be up for debate, the necessity and efficacy of early intervention are not.

It may be easier to define autism in a purely binary manner, but why would this condition be held to a rigid standard that much better understood disease states are not? By this definition, no one would be eligible for a balloon angioplasty or stent implantation because their vasculature was not 100% blocked. "Sorry, sir. Your coronary artery, while 50% blocked, is classified as 'high-functioning' and is thus cannot be be considered eligible for treatment."

 

[Stitch]

Early intervention programs are one of the best programs states have. Both of my sons were considered special education, but by the time they moved on to kindergarten, they didn't have IEPs anymore.

 

[EStreetJoe]

It's kind of scary that the vast majority of kids presently diagnosed with PDD-NOS will no longer be considered to be on the spectrum.

My son didn't have an autism or PDD-NOS diagnosis to qualify for Early Intervention therapies (here in NJ the therapists they sent out to the house to do the testing found he was deficient enough in enough areas to qualify).

However once he turned 3 Early Intervention stopped and the school district took over. Their testing showed he was borderline in qualifying for services but the PDD-NOS diagnosis sealed the deal.

A friend of mine has a middle of the road son with autism and his anger over it has made him a conspiracy theorist. He believes that drug companies are paying off the doctors to change the definition so there will no longer be an autism epidemic, vaccines won't be blamed for the rise in autism, parents will be less afraid to get their kids vaccinated, and the drug companies can make millions off vaccine sales. I tried countering wouldn't the drug companies want more cases so they can come out with a drug they can widely market and make millions off of to treat autism and the response was that the companies make the majority of their money off vaccines, not drugs.

 

[LongTimeListener]

I fail to see how this helps in any way. What benefit is there from excluding children presently defined as "high-functioning" from early intervention? My son is high-functioning and he would not be where he is today without those services. This is all semantic nonsense. Call it high-functioning autism spectrum disorder, Babbitt's Syndrome or whatever the hell you want. While the classification of the root cause may be up for debate, the necessity and efficacy of early intervention are not.

It may be easier to define autism in a purely binary manner, but why would this condition be held to a rigid standard that much better understood disease states are not? By this definition, no one would be eligible for a balloon angioplasty or stent implantation because their vasculature was not 100% blocked. "Sorry, sir. Your coronary artery, while 50% blocked, is classified as 'high-functioning' and is thus cannot be be considered eligible for treatment."

It saves the taxpayers money. These are the kinds of choices the new "leaner, more efficient" educational system will have to make if funding continues to go the way it has been.

 

[DanielSimpsonDay]

I fail to see how this helps in any way. What benefit is there from excluding children presently defined as "high-functioning" from early intervention? My son is high-functioning and he would not be where he is today without those services. This is all semantic nonsense. Call it high-functioning autism spectrum disorder, Babbitt's Syndrome or whatever the hell you want. While the classification of the root cause may be up for debate, the necessity and efficacy of early intervention are not.

It may be easier to define autism in a purely binary manner, but why would this condition be held to a rigid standard that much better understood disease states are not? By this definition, no one would be eligible for a balloon angioplasty or stent implantation because their vasculature was not 100% blocked. "Sorry, sir. Your coronary artery, while 50% blocked, is classified as 'high-functioning' and is thus cannot be be considered eligible for treatment."

It saves the taxpayers money. These are the kinds of choices the new "leaner, more efficient" educational system will have to make if funding continues to go the way it has been.

Well, of course. I was thinking in terms of clinical utility.

 

[waterytart]

Based on my reading of the proposed definition, our son would still qualify for services even though he's high-functioning. For those who would lose services, their parents have to be terrified about losing the hope for improvement.

 

[rpmmutant]

I do not like the term high-functioning. I have a son on the spectrum, who has always been defined as high-functioning. He has a lot of language, but it is mostly scripted, rote or echolalia. He rarely uses conversational language. But because of his high-functioning, language skills, he might be be considered on the spectrum under the new definition. Never mind that he has some very severe sensation issues. He can't wear certain clothes because of the material, can't eat certain foods because of textures, can't be outside on days when it is too hot. Sure, he's high-functioning in certain areas because he's been in speech therapy since he was 3. But he still has severe reactions to clothes, food and heat. This is a change for schools to save money on providing services for kids with autism. The ones who need the most help are being cut off from the services that provide the most help.

 

[BrianGriffin]

As the uncle of a recent high school graduate with Asperger's, I can say that this is a classic case of something that the private sector can do better. The private sector has plenty of incentive in providing these services because there's always a chance that an offspring of Bill Gates or Warren Buffett will be diagnosed with this. And then, once their needs are met, the care can trickle down to our kids too and it will be better, more efficient care because it was designed for a billionaire's kid.

Did I mention we have a spending problem, not a revenue problem?

One more question: Where's that blue font button?

 

[waterytart]

As the uncle of a recent high school graduate with Asperger's, I can say that this is a classic case of something that the private sector can do better. The private sector has plenty of incentive in providing these services because there's always a chance that an offspring of Bill Gates or Warren Buffett will be diagnosed with this. And then, once their needs are met, the care can trickle down to our kids too and it will be better, more efficient care because it was designed for a billionaire's kid.

Did I mention we have a spending problem, not a revenue problem?

One more question: Where's that blue font button?

Whew.

 

[Baron Scicluna]

There have been times when I've told people about my son, and they're like, "He doesn't seem autistic."

I ask them how they come to that conclusion. And they say, "Rainman".

 

[Kato]

I have a 13-year-old son with Asperger's and he receives services. But as far as the school is concerned, he's on the Autism spectrum. They list him as having ASD. I'm not sure why these changes would cut down the number of diagnoses. I would think it might actually increase it.

Listening to a pretty good NPR piece this week on Asperger's and ASD, it seems the worst thing about the APA lumping them all together is helping individuals understand what they have and what they're dealing with, especially if there are different characteristics and different coping mechanisms for different parts of the spectrum. There's a big difference between telling a people they are autistic and telling them they have Asperger's, where they can find information specific to them.

 

[Azrael]

Honest question: Which might present the bigger problem for autism treatment, overdiagnosis or underdiagnosis?

 

[Mizzougrad96]

Unfortunately, I think people are being diagnosed as having Aspergers or autism who don't have it. The same holds true with ADHD.

There are a lot of parents who need "an excuse" for why their kid misbehaves. Some would rather say, "He's mildly autistic." than anything that suggests that there may be a parenting issue involved or that the kid is just anti-social.

My cousin has high-functioning Aspergers and he doesn't go to the doctor anymore than anyone else does. He's on some medication that his sister says helps him, and if that's the case, I truly feel sorry for anyone who has to be around him when he's not medicated. Hell, I feel sorry for anyone who has to be around him in his current state.

 

[Mizzougrad96]

Honest question: Which might present the bigger problem for autism treatment, overdiagnosis or underdiagnosis?

Wow, that's a great question.

 

[LongTimeListener]

Honest question: Which might present the bigger problem for autism treatment, overdiagnosis or underdiagnosis?

Wow, that's a great question.

Yeah. At the risk of running emotions too high here -- and I am not including you in this Baron, I know the care and research you have put into the whole topic -- but I do think there are parents who believe their child is "a little off" somehow and go looking for any diagnosis they can find, and they will eventually find a doctor who will run through all the tests and then find a leaning or some kind of "on the spectrum" diagnosis. Whether that is a significant percentage of the kids who end up receiving services from the schools, I don't know, but that portion does exist.

 

[Mizzougrad96]

We have a kid in the neighborhood, who is as normal as any other kid and the mother tells anyone who gets within 100 yards of her "HE'S MILDLY AUTISTIC!!!"

There is nothing wrong with the kid. He gets shy when his mother is around because she's an insufferable dunce and she smothers all of her kids.

There was another kid who my oldest played little league with. We were at a pizza party and my oldest kid wanted me to show him and the other kid how to play Angry Birds on my phone. I sat there with both of them for about 45 minutes and this kid was sharp, friendly, funny and as normal as any other 5-year-old.

I know he had been diagnosed with autism, and this kid has great, great parents, but I didn't see anything that would suggest that he is any different than anyone else.

 

[Kato]

Mizzou, I can't speak for other parents or kids or people who suffered without a diagnosis until they were 40 years old. But I can say that our world changed when our son was diagnosed with Asperger's at the age of 4. It explained his social behavior, his outbursts, his anxiety, his need to stay on schedule and many other things.

We didn't go looking for a diagnosis, and he wasn't misbehaving. We weren't looking for excuses for him. We were trying to help him. We had great preschool teachers who saw some things in him and helped us with some of our own anxieties about what he might or might not have been going through. He went through a hellish (for him or anyone with Asperger's, I imagine) barrage of observations over the course of a morning and the consensus was Asperger's. For me, the last thing I wanted to hear 9 years ago was that my son was autistic. It broke my heart.

Still, a lot of people we know (and if you met him, you might feel the same), don't realize that he's all that different than a so-called normal kid. They just think he's shy and small and quiet, a little silly at times but maybe a bit of a loner too. But I guarantee he has some struggles that many other people don't have, or at least small things to you or me can be major life problems for him.

Is ADS being diagnosed too much? Maybe? But it changed our life, our son's life and helped our family tremendously. We've had excellent teachers and school aides and a cooperative school that works to make sure his IEP is followed and written to his needs. I don't think, 20+ years ago, a kid like that would get the help and support he needed. Some of those kids do fine; some don't.

 

[waterytart]

We didn't go looking for a diagnosis, and he wasn't misbehaving. We weren't looking for excuses for him. We were trying to help him. We had great preschool teachers who saw some things in him and helped us with some of our own anxieties about what he might or might not have been going through. He went through a hellish (for him or anyone with Asperger's, I imagine) barrage of observations over the course of a morning and the consensus was Asperger's. For me, the last thing I wanted to hear 9 years ago was that my son was autistic. It broke my heart.

Thank you. I pleaded with the psychologist who diagnosed our son not to hang the autism label on him. ("He's verbal, he's loving, it can't be autism.")

Every time there's an autism thread, you can count on people showing up to say it's just parents angling for benefits and privileges, or to cover their own shortcomings. They should all be giving thanks they're not coping with a child's impairment while being blamed for it.