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

[Anonymous]

There are a lot fewer kids being diagnosed with MR (mental retardation) now than there were twenty years ago, though.

I grew up with a sib dx'd with MR who today I am 100% sure would be dx'd with ASD. Nobody suggested that diagnosis when he was growing up because ASD meant something different in the 80s when he was a kid. Being able to recite the location of every ATM within 20 miles, repeating phrases heard on TV, making repetitive gestures, having social communication issues, and significant learning disabilities......all of that equaled "We don't know what that is, must be MR"
And then once his IQ tested out of MR range, he had no dx at all, despite significant impairment.

[Anonymous]

Anonymous wrote:There are a lot fewer kids being diagnosed with MR (mental retardation) now than there were twenty years ago, though.

I grew up with a sib dx'd with MR who today I am 100% sure would be dx'd with ASD. Nobody suggested that diagnosis when he was growing up because ASD meant something different in the 80s when he was a kid. Being able to recite the location of every ATM within 20 miles, repeating phrases heard on TV, making repetitive gestures, having social communication issues, and significant learning disabilities......all of that equaled "We don't know what that is, must be MR"
And then once his IQ tested out of MR range, he had no dx at all, despite significant impairment.

I think many people can think of someone like this. I remember a college debater from Princeton. He had every metro/subway system in the world memorized and could tell you which line and transfers you needed to take to go from Gung nam to Gimpo airport in Seoul or Park Slope to Bloomingdale's in NYC... plus he had all the social issues of the typical debate nerd. Great debater though, very quick on his feet. He did not have a diagnosis. This was in the 80ties but I'm pretty sure he would have one now.

[Anonymous]

Anonymous wrote:

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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

I have a child with MERLD and my insurance covered zero.

[Anonymous]

Zero what?

[Anonymous]

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.

Oh please. Enough with this urban legend of entree into the magic land of services!
Our diagnosis produced ZERO covered services. Insurance company stated "not medically necessary" in the early years and then turned to "it's an academic issue" that school should cover...school said the grades are good, so uh, no....
So, years of private pay we underwent.
Also didn't pave the way for an IEP or 504 one bit. Finally determined eligible after nearly a year lawyer/advocate involvement.

I spit out my water laughing at this. It's so true. Some people seem to think we go begging for an autism diagnosis to open some magical door. My checkbook would like to take the stand to testify to the fact the magical autism label didn't do bupkus for us.

[Anonymous]

I hope all of this back and forth with naysayers is providing awareness (after all tomorrow starts Autism Awareness Month). My fear is it is just doing a disservice to those who want information pre-diagnosis and is an insult to those post diagnosis. IMHO.

And to PP, my checkbook will testify on the stand with yours. Just started looking for summer programs suitable for SN kids.

[Anonymous]

I will say that there were services that my son couldn't get because he didn't have an ASD diagnosis. With our insurance, ASD got you into a whole separate program with many services that we would have benefited from.

[Anonymous]

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.

Absolutely this!

[Anonymous]

I haven't read through this whole thread but responding to some of the earlier PPs... the couple of kids I know who have lost their PDD-NOS diagnoses and are now officially not on the spectrum still have very severe issues, social communication disorder, ADHD, anxiety, etc. They didn't simply "lose" their diagnoses.

[Anonymous]

Anonymous wrote:I will say that there were services that my son couldn't get because he didn't have an ASD diagnosis. With our insurance, ASD got you into a whole separate program with many services that we would have benefited from.

Exactly. In the states where an autism diagnosis brings state-mandated insurance coverage, there's a high incentive to get an ASD diagnosis. Of course in many of those states, they have severely ramped up what it takes to get an official diagnosis, like you can only use a few approved clinics.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I will say that there were services that my son couldn't get because he didn't have an ASD diagnosis. With our insurance, ASD got you into a whole separate program with many services that we would have benefited from.

Exactly. In the states where an autism diagnosis brings state-mandated insurance coverage, there's a high incentive to get an ASD diagnosis. Of course in many of those states, they have severely ramped up what it takes to get an official diagnosis, like you can only use a few approved clinics.

Here is a list of states with state mandated coverage for ASD:

http://www.asha.org/Advocacy/state/States-Specific-Autism-Mandates/

DC and Maryland does not have it. VA does but only for children 2-6 yrs old and these kids are covered as they get older. However, if your child is diagnosed with ASD after the age of 6, as is common with HFA/Asperger's, you are out of luck.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I will say that there were services that my son couldn't get because he didn't have an ASD diagnosis. With our insurance, ASD got you into a whole separate program with many services that we would have benefited from.

Exactly. In the states where an autism diagnosis brings state-mandated insurance coverage, there's a high incentive to get an ASD diagnosis. Of course in many of those states, they have severely ramped up what it takes to get an official diagnosis, like you can only use a few approved clinics.

Here is a list of states with state mandated coverage for ASD:

http://www.asha.org/Advocacy/state/States-Specific-Autism-Mandates/

DC and Maryland does not have it. VA does but only for children 2-6 yrs old and these kids are covered as they get older. However, if your child is diagnosed with ASD after the age of 6, as is common with HFA/Asperger's, you are out of luck.

But a lot of states are clearly incentivizing an ASD diagnosis over others, in many cases, up to 36 to 50 grand a year.

Alabama
Alaska
Arizona
Arkansas
California
Colorado
Connecticut
Delaware
Florida
Illinois
Indiana
Iowa



Kansas
Kentucky
Louisiana
Maine
Massachusetts
Michigan
Missouri
Montana
Nevada
New Hampshire
New Jersey
New Mexico



New York
Oregon
Pennsylvania
Rhode Island
South Carolina
Texas
Vermont
Virginia
West Viriginia
Wisconsin


- See more at: http://www.asha.org/Advocacy/state/States-Specific-Autism-Mandates/#sthash.86zfv9is.dpuf

[Anonymous]

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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

No similar breakdown unfortunately. And it's all Autism Spectrum Disorder: Keeping the old DSM-4 diagnosis as a "type" is simply to indicate where on the spectrum the child falls because there is a huge range.

PDD-NOS was the catch all for kids who did not quite fit HFA/Asperger's. For instance, the kid did not fit into Asperger's b/c he lacked the obsessive interests. From what I observed at our school, the kids who had an IEP for PDD-NOS did not lose their IEP or services when the DSM-5 came out b/c they they were no longer "autistic" no matter the pp who keeps repeating how PDD-NOS is no longer recognized as ASD.

Hopefully, by having ASD rather than the alphabet soup of AS, PDD-NOS, HFA... More kids are getting the help and supports they need. Best of luck to your baby! Your a great mom for getting your child help so early.

Thank you so much for taking the time to answer my question, PP. This was really helpful.

Full-text of the diagnostic criteria for autism spectrum disorder (ASD) and the related diagnosis of social communication disorder (SCD): http://www.autismspeaks.org/what-autism/diagnosis/dsm-5-diagnostic-criteria

Thank you, PP! Based on this it is very difficult for me to guess at what the results of my son's evaluation might indicate. He is very young still (14 months), which I am guessing means there are simply indicators at this point in time rather that anything truly diagnosable. I am hoping that some of his issues are "merely" delays, but what has me most worried are the delays/deficits in the broad realm of communication. They are across the board.

You're welcome. I'm new at this, too; my son was 17 months when Dx. Despite what many people believe, diagnosis can be made this early, but they might not be able to accurately assess severity (where he is on the spectrum) or predict outcome. They used to hold off on a diagnosis until 3 y.o., but now they want to identify ASD kids way before that, because early intervention is so important. Good luck!

Thank you again, PP. Are you the OP of the thread on having your 15 month old evaluated? I've followed that closely. We had our initial evaluation last week, and will be meeting with an evaluator, special educator and SLP on Thursday. I'm really anxious.

[Anonymous]

Anonymous wrote:I hope all of this back and forth with naysayers is providing awareness (after all tomorrow starts Autism Awareness Month). My fear is it is just doing a disservice to those who want information pre-diagnosis and is an insult to those post diagnosis. IMHO.

And to PP, my checkbook will testify on the stand with yours. Just started looking for summer programs suitable for SN kids.

Oh god, I hope you have some wine at hand when you click on the "tuition" page. We have heard good things about the JCC in Annandale's SN camp but can't afford it (it was something like 900-1000$/week!!!). We have tried the Fairfax adaptive rec camp ("explorers"?) and my ds hated it and refused to go.

[Anonymous]

I don't understand the "state mandated coverage" thing. We live in VA and our insurance provider does not cover speech therapy (we need it for low oral motor tone) or OT (again-low motor tone) even though we have an autism diagnosis. What are all these services insurance cos are required to provide?