CDC autism rates 1 in 68 kids..... 1 in 42 boys!

[Anonymous]

Anonymous wrote:These numbers the CDC throws out are always faulty. First, they are looking at records. Second, they use school labels as well and states vary widely on what they consider autism. That's why you see the wide swing in numbers. Not all these children have actual diagnoses from doctors.


http://www.cnn.com/2014/03/27/health/cdc-autism/

However, experts such as Wiznitzer and Goldstein are concerned that the new CDC report is not describing the same autism that was present and diagnosed 20 years ago, when the numbers first shot up.

"Twenty years ago we thought of autism with intellectual disability. We never looked at children who had normal intelligence" -- doctors never considered that high-functioning children had autism too, says Goldstein.

Wiznitzer believes written reports can't definitively determine whether a child has autism. You need to see the child to complete a diagnosis, which the CDC experts did not have the opportunity to do.

"This report tells us that there's a significant number of children in the states where they were assessed that have social differences and a pattern of behaviors that can be represented by ASD, but may also be due to other conditions that superficially can have similar features, such as social anxiety, ADHD with social immaturity and intelligence problems," he says.

Thanks for this. Diagnosing high functioning autism correctly must be a really hands on, subjective thing - how else can you diagnose a disorder that has to do with social functioning? I have never understood why the CDC approach has any validity whatsoever since all it does it look at paper records and non-clinical labels, and no quality controls on the diagnoses at all.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

It's not an epidemic. It's gross misdiagnosis/overdiagnosis/sloppy diagnosis to get services.

Also, they did not use the DSM 5 -- and that will cut autism dxs by a third.

So you are saying that there are a bunch of kids who are getting services they don't need? That parents are in cahoots with doctors to get their kids services they don't need. Why would they do that?

...so that insurance will cover therapy - that's why. Many therapies for kids on spectrum also help kids with ADHD, Sensory issues, MERLD

My insurance does not give a shit that my kid has autism. We get a certain amount of sessions for OT or ST or PT no matter what the disability. Furthermore, it is nearly impossible to find top notch clinicians near us who take insurance and don't have massive waitlists.

Thank you. And this, from my "high end" most expensive plan of choice at work.

[Anonymous]

Anonymous wrote:There are a lot of studies that say that many kids with ASD/Asperger's are NOT getting diagnosed and NOT getting the services and supports that they need and are entitled to.

This I believe.

We looked at the MCPS elementary school programs for AS while exploring our limited options.
A handful of kids.
Where are the rest of them, as they surely exist?
Perhaps being pushed aside, ostracized, and written up, and sitting in the office 3-4 days a week at school, as was default treatment for our DS.

[Anonymous]

Anonymous wrote:

Anonymous wrote:There are a lot of studies that say that many kids with ASD/Asperger's are NOT getting diagnosed and NOT getting the services and supports that they need and are entitled to.

Studies? I've seen none of those. Opinions, yes.

Links?

Don't have time to look but someone posted this link;

http://www.medicalnewstoday.com/articles/273229.php

Not exactly what you are looking for but the article does not indicate much if any misdiagnosis for Asperger's


Here is an NPR story on why Asperger's is now ASD/Asperger's in the DSM-5


http://www.npr.org/templates/story/story.php?storyId=123527833


Note, it's to get services. Unlike ASD, having an Asperger's diagnosis did not automatically qualify kids with the diagnosis for services/supports in some states most notably California.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:These numbers the CDC throws out are always faulty. First, they are looking at records. Second, they use school labels as well and states vary widely on what they consider autism. That's why you see the wide swing in numbers. Not all these children have actual diagnoses from doctors.


http://www.cnn.com/2014/03/27/health/cdc-autism/

However, experts such as Wiznitzer and Goldstein are concerned that the new CDC report is not describing the same autism that was present and diagnosed 20 years ago, when the numbers first shot up.

"Twenty years ago we thought of autism with intellectual disability. We never looked at children who had normal intelligence" -- doctors never considered that high-functioning children had autism too, says Goldstein.

Wiznitzer believes written reports can't definitively determine whether a child has autism. You need to see the child to complete a diagnosis, which the CDC experts did not have the opportunity to do.

"This report tells us that there's a significant number of children in the states where they were assessed that have social differences and a pattern of behaviors that can be represented by ASD, but may also be due to other conditions that superficially can have similar features, such as [b]social anxiety, ADHD with social immaturity and intelligence problems," he says.[/b]

Thanks for this. Diagnosing high functioning autism correctly must be a really hands on, subjective thing - how else can you diagnose a disorder that has to do with social functioning? I have never understood why the CDC approach has any validity whatsoever since all it does it look at paper records and non-clinical labels, and no quality controls on the diagnoses at all.

Well, having just social anxiety, social immaturity, etc. does not qualify for an Asperger's diagnosis. Even in the DSM-5, to get ASD/Asperger's type you need besides having at least normal intelligence and no speech delay other than pragmatics:

1. social communication disorder
2. repetitive behaviors
3. obsessive interests.

ALL THREE. It's a rigid criteria and I doubt there is an epidemic of overdiagnosis of Asperger's like some posters are saying.

[Anonymous]

http://www.care2.com/causes/did-the-dsm-create-an-epidemic-of-aspergers.html

Dr. Allen Frances, editor of the DSM IV, on the overdiagnosis of Asperger's.


In a small condo on the beach in San Diego lives Allen Frances, who blames himself for what he calls the "Epidemic of Asperger's." Frances edited the last edition of the DSM, and he's also the new DSM's most prominent critic.

Frances is the one who put the word Asperger's in the DSM in the first place, thereby making it an official mental disorder.

In the editions before Frances was editor, there was an entry for autism, but it was defined by severe symptoms. Frances says doctors felt the diagnosis for autism didn't cover a more mild disorder they were actually encountering.

"Pediatricians and child psychiatrists would see kids who could talk but who had social discomfort — severe social discomfort — and awkwardness and a very restricted and impairing level of interests and activities, and they wanted a diagnosis for this," Frances says.

A study was done to figure out how common Asperger's was, and the results were clear: It was vanishingly rare. Then Frances put it in the DSM, and the number of kids diagnosed with the disorder exploded. Frances remembers sitting in his condo reading articles about this new epidemic of Asperger's that was sweeping the nation.
The Diagnostic and Statistical Manual of Mental Disorders

The Diagnostic and Statistical Manual of Mental Disorders, or DSM, is the official list of all the mental disorders doctors can use to diagnose mental illness.
Ellen Webber/NPR

"At that point I did an 'oops,' " he says. "This is a complete misunderstanding. It was distressing. Quite distressing."


It's not that Frances doesn't think that Asperger's exists and is a real problem for some people; he does. But he also believes the diagnosis is now radically overused in a way that he and his colleagues never intended. And why, in his view, did Asperger's explode? Primarily, Frances says, because schools created a strange unintentional incentive.

"In order to get specialized services, often one-to-one education, a child must have a diagnosis of Asperger's or some other autistic disorder," he says.

"And so kids who previously might have been considered on the boundary, eccentric, socially shy, but bright and doing well in school would mainstream [into] regular classes," Frances says. "Now if they get the diagnosis of Asperger's disorder, [they] get into a special program where they may get $50,000 a year worth of educational services."

[Anonymous]

Anonymous wrote:http://www.care2.com/causes/did-the-dsm-create-an-epidemic-of-aspergers.html

Dr. Allen Frances, editor of the DSM IV, on the overdiagnosis of Asperger's.


In a small condo on the beach in San Diego lives Allen Frances, who blames himself for what he calls the "Epidemic of Asperger's." Frances edited the last edition of the DSM, and he's also the new DSM's most prominent critic.

Frances is the one who put the word Asperger's in the DSM in the first place, thereby making it an official mental disorder.

In the editions before Frances was editor, there was an entry for autism, but it was defined by severe symptoms. Frances says doctors felt the diagnosis for autism didn't cover a more mild disorder they were actually encountering.

"Pediatricians and child psychiatrists would see kids who could talk but who had social discomfort — severe social discomfort — and awkwardness and a very restricted and impairing level of interests and activities, and they wanted a diagnosis for this," Frances says.

A study was done to figure out how common Asperger's was, and the results were clear: It was vanishingly rare. Then Frances put it in the DSM, and the number of kids diagnosed with the disorder exploded. Frances remembers sitting in his condo reading articles about this new epidemic of Asperger's that was sweeping the nation.
The Diagnostic and Statistical Manual of Mental Disorders

The Diagnostic and Statistical Manual of Mental Disorders, or DSM, is the official list of all the mental disorders doctors can use to diagnose mental illness.
Ellen Webber/NPR

"At that point I did an 'oops,' " he says. "This is a complete misunderstanding. It was distressing. Quite distressing."


It's not that Frances doesn't think that Asperger's exists and is a real problem for some people; he does. But he also believes the diagnosis is now radically overused in a way that he and his colleagues never intended. And why, in his view, did Asperger's explode? Primarily, Frances says, because schools created a strange unintentional incentive.

"In order to get specialized services, often one-to-one education, a child must have a diagnosis of Asperger's or some other autistic disorder," he says.

"And so kids who previously might have been considered on the boundary, eccentric, socially shy, but bright and doing well in school would mainstream [into] regular classes," Frances says. "Now if they get the diagnosis of Asperger's disorder, [they] get into a special program where they may get $50,000 a year worth of educational services."

I would love to get my kid with Asperger's $50,000 a year worth of educational services but alas he is just at a mainstream public school with an IEP getting social skills classes and OT. If there are any parents here who is getting 50k or even 25k worth of services, please let us know how you got it.

[Anonymous]

What the hell is that guy talking about? I have a 10 year old daughter with Asperger's who spent the first 7 years of her life being misdiagnosed, disciplined, kicked out of programs, schlepped around to various specialists and even with a diagnosis that makes sense (although no one seems to really know or understand Asperger's in girls and how it looks the same or different in girls v boys) we are still struggling to get decent supports for her in public school. 50k a year, my ass.

[Anonymous]

Anonymous wrote:9:21 here. We are in DC with CareFirst BlueChoice. Tough finding psych or OT. PT easier.

Ugh, DC is tough. Most of the places I know are out in the VA burbs. I'll list what I know in case this helps anyone else.

Psychologists/psychiatrists who accept insurance plans in-network
-- Fairfax Clinical Psychology Services has a lot of associated psychologists and they are in-network for a lot of insurance.
--Dominion Center for Behavioral Health (south riding location and falls church location-much easier to get in to see someone in south riding). They have child psychiatrists and psychologists in network.

Speech Therapy:
--Fleming Speech (Springfield and Centreville)-will do a free eval and written report
--Building Blocks (Falls Church)
--Childrens Therapy Center (Springfield and Sterling offices)
--Teach Speech (Aldie)

Neuropsychs:
KKI and Childrens are the only ones in-network I know of.
OT:
--Fleming Speech - will do a free eval and written report
--Childrens Therapy Center (Springfield and Sterling offices)
--Teach Speech (Aldie)

In-network providers I would avoid:
Creative Health Solutions (ST and OT) -Fairfax -really bad reviews on this board.
A developmental pediatrician who works out of her house in Springfield somewhere.

[Anonymous]

Witnitizer always gets his feathers ruffled when the CDC comes out with autism prevalence rates. Who cares if now those with the label are more on the higher end and why call it a different disorder instead of you know a SPECTRUM disorder? Would her prefer we call it SADDD (social and developmental delay disorder?) The point is these kids need services. They are at risk. There are indeed MORE of these kids no matter what you call them. Talk to veteran SN teachers. Sure maybe a very small subset were just the endearing nerds in gifted programs, but that is nothing. We have lots of kids flapping around, unable to communicate effectively who need to ideally become productive members of society. Sure the prognosis may be better for HFA, but I can guarantee you if we just label those kids typical and they don't get services society will pay the price. My kid may be doing well now, but there is no way in hell he'd be here without the intensive EI, etc.

[Anonymous]

Anonymous wrote:

Anonymous wrote:9:21 here. We are in DC with CareFirst BlueChoice. Tough finding psych or OT. PT easier.

Ugh, DC is tough. Most of the places I know are out in the VA burbs. I'll list what I know in case this helps anyone else.

Psychologists/psychiatrists who accept insurance plans in-network
-- Fairfax Clinical Psychology Services has a lot of associated psychologists and they are in-network for a lot of insurance.
--Dominion Center for Behavioral Health (south riding location and falls church location-much easier to get in to see someone in south riding). They have child psychiatrists and psychologists in network.

Speech Therapy:
--Fleming Speech (Springfield and Centreville)-will do a free eval and written report
--Building Blocks (Falls Church)
--Childrens Therapy Center (Springfield and Sterling offices)
--Teach Speech (Aldie)

Neuropsychs:
KKI and Childrens are the only ones in-network I know of.
OT:
--Fleming Speech - will do a free eval and written report
--Childrens Therapy Center (Springfield and Sterling offices)
--Teach Speech (Aldie)

In-network providers I would avoid:
Creative Health Solutions (ST and OT) -Fairfax -really bad reviews on this board.
A developmental pediatrician who works out of her house in Springfield somewhere.

Building blocks does not accept insurance and they are really expensive.

[Anonymous]

Anonymous wrote: Wow. Not looking to have yet another discussion about widening the definition of autism vs. true epidemic. I have read enough on the topic to know that there is some of both, leaning more toward epidemic. The definition in the new DSM may decrease the number of diagnoses, but it isn't going to decrease the number of kids with special needs-whether or not those needs have a label.

I have so much to express as a parent of a child with autism, but right now I am too exhausted to be coherent so all I can say is wow. Just wow. What does the future hold?

This is because they are calling everything autism.

A professor of Developmental Neuropsychology from Oxford details three studies on this in her blog: http://deevybee.blogspot.com/2012/06/autism-epidemic-and-diagnostic.html

The ‘autism epidemic’ and diagnostic substitution


"Explanation #3 is very different: it says the increase is not a real increase - it’s just a change in what we count as autism. This has been termed ‘diagnostic substitution’ - the basic idea is that children who would previously have received another diagnosis or no diagnosis are now being identified with autism spectrum disorder (ASD). This could be in part because of new conceptualisations of autism, but may also be fuelled by strategic considerations: resources for children with ASD tend to be much better than those for children with other related conditions, such as language impairment or intellectual handicaps, so this diagnosis may be preferred.
....

"In 2008, my research group published a study that documented one kind of diagnostic substitution. We contacted people who had taken part in our studies of children with specific language impairment years ago. We carried out a standard diagnostic observation procedure for autism with the young adults themselves and, where possible, interviewed their parents about their early history. We found a number of individuals who had been regarded as cases of specific language impairment ten or twenty years ago but who would nowadays be diagnosed with ASD. "
....
"It is becoming clear that changing diagnostic criteria, increased awareness of ASD, and strategic use of diagnosis to gain access to services, have had a massive effect on the numbers of children with ASD. When I started studies in this area, I thought diagnostic substitution had happened but I did not think it would be sufficient to explain the increase in numbers of ASD diagnoses. But now, on the basis of studies reviewed here, I think it could be the full story."

[Anonymous]

Anonymous wrote:I don't believe it. Kids in NJ likely to to the doctor more than kids in Alabama, thus higher a percentage has been diagnosed in NJ.

Might be true, but that doesn't mean the Alabama number is right and the NJ number is wrong.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:These numbers the CDC throws out are always faulty. First, they are looking at records. Second, they use school labels as well and states vary widely on what they consider autism. That's why you see the wide swing in numbers. Not all these children have actual diagnoses from doctors.


http://www.cnn.com/2014/03/27/health/cdc-autism/

However, experts such as Wiznitzer and Goldstein are concerned that the new CDC report is not describing the same autism that was present and diagnosed 20 years ago, when the numbers first shot up.

"Twenty years ago we thought of autism with intellectual disability. We never looked at children who had normal intelligence" -- doctors never considered that high-functioning children had autism too, says Goldstein.

Wiznitzer believes written reports can't definitively determine whether a child has autism. You need to see the child to complete a diagnosis, which the CDC experts did not have the opportunity to do.

"This report tells us that there's a significant number of children in the states where they were assessed that have social differences and a pattern of behaviors that can be represented by ASD, but may also be due to other conditions that superficially can have similar features, such as [b]social anxiety, ADHD with social immaturity and intelligence problems," he says.[/b]

Thanks for this. Diagnosing high functioning autism correctly must be a really hands on, subjective thing - how else can you diagnose a disorder that has to do with social functioning? I have never understood why the CDC approach has any validity whatsoever since all it does it look at paper records and non-clinical labels, and no quality controls on the diagnoses at all.

Well, having just social anxiety, social immaturity, etc. does not qualify for an Asperger's diagnosis. Even in the DSM-5, to get ASD/Asperger's type you need besides having at least normal intelligence and no speech delay other than pragmatics:

1. social communication disorder
2. repetitive behaviors
3. obsessive interests.

ALL THREE. It's a rigid criteria and I doubt there is an epidemic of overdiagnosis of Asperger's like some posters are saying.

Sorry to post a really off-topic question here, but the above criteria were really helpful for me in understanding the diagnosis of Asperger's. Do you have or could you describe a similar breakdown of the criteria for ASD and PDD-NOS? Or could you point me to somewhere to look to figure out that info on my own?

-Mom who is very new to this with a toddler undergoing evaluation

[Anonymous]

Anonymous wrote:

Anonymous wrote:I don't believe it. Kids in NJ likely to to the doctor more than kids in Alabama, thus higher a percentage has been diagnosed in NJ.

Might be true, but that doesn't mean the Alabama number is right and the NJ number is wrong.

No, but it means I don't trust this "evidence" at all.