CNN report -- Autism: Could high U.S. rate be due to over-diagnosis?

[Anonymous]

Our insurance has also been crap. So I feel ya, PP. We pay for a lot out of pocket too. I know I need to be better with calling the insurance company and fighting. I believe you can ask for exceptions to the coverage if you can't find an in-network provider taking patients within a specific driving distance. And I was recently told by my insurance that OT services have an age 6 cap - so no OT services to be paid for my child who needs it after age 6. He's now 5.

But PP has a valid point in that it is really tough to get adequate services that you can afford and that works with your schedule and commute.

[Anonymous]

Anonymous wrote:Our insurance has also been crap. So I feel ya, PP. We pay for a lot out of pocket too. I know I need to be better with calling the insurance company and fighting. I believe you can ask for exceptions to the coverage if you can't find an in-network provider taking patients within a specific driving distance. And I was recently told by my insurance that OT services have an age 6 cap - so no OT services to be paid for my child who needs it after age 6. He's now 5.

But PP has a valid point in that it is really tough to get adequate services that you can afford and that works with your schedule and commute.

With therapists, I found the insurance company push back on this to be unreal. You need a psychiatrist who specializes in children, and they find one for you, who is running a patient waitlist and doesn't see children. Or is a LCSW, when you need an MD. And when we had out of network coverage, it was ridiculous. You pay $300/hour for a psychiatrist and the insurance company consider $80/hour the "customary" charge, and then you get reimbursed 30% of $90. It is bullshit.

[Anonymous]

True autism coverage would require doctors and providers to accept insurance. IMO.

[Anonymous]

Anonymous wrote:True autism coverage would require doctors and providers to accept insurance. IMO.

Yes, but many families will private pay so there is no incentive for providers to accept insurance and deal with the paperwork when someone will write them a check.

[Anonymous]

Anonymous wrote:

Anonymous wrote:True autism coverage would require doctors and providers to accept insurance. IMO.

Yes, but many families will private pay so there is no incentive for providers to accept insurance and deal with the paperwork when someone will write them a check.

That's exactly why they should be *required* to take insurance. That's the situation right now-only the crappiest local providers take insurance because everyone else can get patients who will pay cash.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:True autism coverage would require doctors and providers to accept insurance. IMO.

Yes, but many families will private pay so there is no incentive for providers to accept insurance and deal with the paperwork when someone will write them a check.

That's exactly why they should be *required* to take insurance. That's the situation right now-only the crappiest local providers take insurance because everyone else can get patients who will pay cash.

It would be nice but its not going to happen. The trend is moving away from insurance with concierge service. Its a huge problem as we have a family member on medicaid and very few providers take it.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I also think that our public school education is asking WAY TOO MICH, TOO EARLY from children - which makes many children "fail" to meet those goals, and look like they have "needs."

I know know know (as an early childhood eduacator) that many children do have ASD, ADHD and anxiety. But I also know that kindergarten children need more play-based education, more time to play outside than 20 or 30 minutes some days not all days, and that our children no longer walk to school, even those who live close enough to walk, because their parents must leave the house to get to work before the kids could leave so those kids end up driven to school or bused. Leading to not even having a 20 minute walking time when those kids could get their wiggles out before sitting ALL DAY in kindergarten.

Remember in the 70s when kindergarten was play-based? When it had dramatic play, a post office area, when you played outside on the climber, swingset (yes, over concrete, I'm not saying it was perfect) but those kids got exercise. In my 1st, 2nd and 3rd grade classes we went outside in the morning for recess, then after lunch we got a 2nd recess, then we walked to/from school - we got a lot of exercise. So those active, hyper, quirky kids got a lot of exercise, which helped them focus. Oh, and they didn't need to sit the whole day starting at 5 years old, either.

Sigh. I'm so frustrated by our school system, and I do believe that some kids (not all) end up being diagnosed because they don't fit into our developentally inappropriate education expectations.

And, with all this sitting and focusing, and trying to make them read in September of Kindergarten year, we are still behind many other school systems. Perhaps trying to push it down doesn't work? That we should focus on teaching when it does work?

I don't remember K. being play based. I remember going to learn. If we are behind, then we need to look at our academics and parents need to support education vs. make up excuses on why we should dump down our kids. My kid is special needs and he is fine with academics. If a kid without special needs cannot handle it, something more is going on.

Yowzas. I thought having a SN kid made parents a million times more forgiving of all the differences that kids have, that kids come in all shapes and sizes and have different needs. I guess you didn't get that memo.

[Anonymous]

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Anonymous wrote:Yes, but the majority of kids being diagnosed with autism and pushing up the diagnosis numbers to 1 in 68 don't have language delays and most likely would get an ADHD diagnosis if not autism.

Huge generalization. You obviously know jack about developmental delays.

Thanks again, OP for pot stirring with a almost two year old report. We have lots of uniformed coming over from Gen Par.

Story is brand new, not old. And several news organizations are reporting it.

No it's not. You linked to "recent" content from CNN's website that linked to a news story from a year ago. Learn how the internet works.

The study was released in March 2014: http://www.cdc.gov/media/releases/2014/p0327-autism-spectrum-disorder.html

It's OLD news.

Too bad you didn't read the article, which has the followup information in it about contacting the parents after the diagnosis.

I did read it and saw the quote you/OP provided: Researchers say some children who are given the autism label may in fact be struggling with other challenges, such as developmental delays or attention issues. Of the parents who were surveyed about the reversed diagnoses, about 74% thought the reversals were due to new information, meaning their child started to show developmentally appropriate social skills or language abilities, as opposed to a child being "cured."

This is called, common sense--intervention works. BTW, surveying parents doesn't mean the kids aren't autistic; they may have just improved their social skills and language abilities through intervention and still have autism. Again, most people realize that early diagnoses aren't set in stone and early intervention works. It's not "news."

And yet, news organizations are writing about, making it news. Also, the study this report was referencing was released earlier this year, 2015. It is not 2 year old news.

The above quote from the article makes it clear the diagnoses were "reversed" so it wasn't just the parent's opinion. The CDC method of just looking at kids' records and not actual children has been roundly criticized since they came out with their bogus 1 in 68 number.

Again, so what? The kids needed early intervention and it helped. Too bad, you didn't actually read the CDC report. It's not a bogus number, it's an "estimate" based on a surveillance survey, "Researchers reviewed records from community sources that educate, diagnose, treat and/or provide services to children with developmental disabilities. The criteria used to diagnose ASDs and the methods used to collect data have not changed..."

It is not the tragedy you're making it out to be. More kids were counted as ASD b/c more kids were getting services (AKA early intervention than before. Parents, pediatricians, teachers may be more aware of early signs of delays than before and kids are getting the help they need: http://www.cdc.gov/media/releases/2014/p0327-autism-spectrum-disorder.html

You need to leave your bitterness over your kid's ASD diagnosis (whether or not it's accurate) and your wild paranoia over increase in autism diagnoses. It's not a vast conspiracy.

[Anonymous]

Anonymous wrote:

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Anonymous wrote:

Anonymous wrote:Yes, but the majority of kids being diagnosed with autism and pushing up the diagnosis numbers to 1 in 68 don't have language delays and most likely would get an ADHD diagnosis if not autism.

Huge generalization. You obviously know jack about developmental delays.

Thanks again, OP for pot stirring with a almost two year old report. We have lots of uniformed coming over from Gen Par.

Story is brand new, not old. And several news organizations are reporting it.

No it's not. You linked to "recent" content from CNN's website that linked to a news story from a year ago. Learn how the internet works.

The study was released in March 2014: http://www.cdc.gov/media/releases/2014/p0327-autism-spectrum-disorder.html

It's OLD news.

Too bad you didn't read the article, which has the followup information in it about contacting the parents after the diagnosis.

I did read it and saw the quote you/OP provided: Researchers say some children who are given the autism label may in fact be struggling with other challenges, such as developmental delays or attention issues. Of the parents who were surveyed about the reversed diagnoses, about 74% thought the reversals were due to new information, meaning their child started to show developmentally appropriate social skills or language abilities, as opposed to a child being "cured."

This is called, common sense--intervention works. BTW, surveying parents doesn't mean the kids aren't autistic; they may have just improved their social skills and language abilities through intervention and still have autism. Again, most people realize that early diagnoses aren't set in stone and early intervention works. It's not "news."

And yet, news organizations are writing about, making it news. Also, the study this report was referencing was released earlier this year, 2015. It is not 2 year old news.

The above quote from the article makes it clear the diagnoses were "reversed" so it wasn't just the parent's opinion. The CDC method of just looking at kids' records and not actual children has been roundly criticized since they came out with their bogus 1 in 68 number.

Again, so what? The kids needed early intervention and it helped. Too bad, you didn't actually read the CDC report. It's not a bogus number, it's an "estimate" based on a surveillance survey, "Researchers reviewed records from community sources that educate, diagnose, treat and/or provide services to children with developmental disabilities. The criteria used to diagnose ASDs and the methods used to collect data have not changed..."

It is not the tragedy you're making it out to be. More kids were counted as ASD b/c more kids were getting services (AKA early intervention than before. Parents, pediatricians, teachers may be more aware of early signs of delays than before and kids are getting the help they need: http://www.cdc.gov/media/releases/2014/p0327-autism-spectrum-disorder.html

You need to leave your bitterness over your kid's ASD diagnosis (whether or not it's accurate) and your wild paranoia over increase in autism diagnoses. It's not a vast conspiracy.

Early intervention doesn't "cure" autism, though, does it? So the diagnosis made of so many kids were false.

[Anonymous]

It's not about "curing."

Again the CDC data is saying more kids are getting early intervention services...[Hand smack to head.]

[Anonymous]

Also, OP/PP,

Please get out of your head, "false diagnosis." It's not black and white. The kids using services after age 8, may have gotten services under a different educational designation. Also, diagnoses can change after a child gets older and the situation becomes more clear.

Have you ever met a young child with selective mutism or genetic disorder who are non-verbal or barely verbal? I have. When they were young, they were given services coded as autism. When kids are two or three, an autism diagnosis may make the most sense of the behaviors they present with. Through intervention or subsequent evaluations, it can become clearer as to what is going on.

As a parent, you need to start somewhere. Better a child gets services (however they're labeled) early than none at all.

[Anonymous]

From the Huffington Post last night:

http://www.huffingtonpost.com/entry/children-outgrow-autism-why_562a931de4b0aac0b8fcf369?ncid=txtlnkusaolp00000592

Some Children Do Outgrow Autism, But It's Not What You Think
The truth about kids who lose their autism diagnoses.


The Centers for Disease Control and Prevention surveyed more than 1,400 children with ASD -- the largest nationally representative sample of children with autism to date -- and found that about 13 percent of them seemed to shed their ASD-associated behaviors as they grew up.

The catch: that doesn't mean they've stumbled upon some kind of miracle therapy or cure. Rather, as some previous researchers theorized, most of them were simply misdiagnosed or intentionally diagnosed with ASD for other reasons.

Among parents whose child lost an ASD diagnosis, 73.5 percent said it was because they were given a new one, such as attention deficit hyperactivity disorder (46 percent), anxiety problems (17 percent), depression (12 percent) learning disabilities (seven percent), behavioral problems (nine percent) or sensory, auditory, or processing disorders (23 percent).

Another 24 percent said they used the ASD diagnosis to access benefits and services. Meanwhile, 21 percent of parents believe their kids matured out of the disorder or received effective treatment. Less than 2 percent of patients believed their doctor simply got the diagnosis wrong.

[Anonymous]

Anonymous wrote:

From the Huffington Post last night:

http://www.huffingtonpost.com/entry/children-outgrow-autism-why_562a931de4b0aac0b8fcf369?ncid=txtlnkusaolp00000592

Some Children Do Outgrow Autism, But It's Not What You Think
The truth about kids who lose their autism diagnoses.

The Centers for Disease Control and Prevention surveyed more than 1,400 children with ASD -- the largest nationally representative sample of children with autism to date -- and found that about 13 percent of them seemed to shed their ASD-associated behaviors as they grew up.

The catch: that doesn't mean they've stumbled upon some kind of miracle therapy or cure. Rather, as some previous researchers theorized, most of them were simply misdiagnosed or intentionally diagnosed with ASD for other reasons.

Among parents whose child lost an ASD diagnosis, 73.5 percent said it was because they were given a new one, such as attention deficit hyperactivity disorder (46 percent), anxiety problems (17 percent), depression (12 percent) learning disabilities (seven percent), behavioral problems (nine percent) or sensory, auditory, or processing disorders (23 percent).

Another 24 percent said they used the ASD diagnosis to access benefits and services. Meanwhile, 21 percent of parents believe their kids matured out of the disorder or received effective treatment. Less than 2 percent of patients believed their doctor simply got the diagnosis wrong.

Again, OP, so what? Your proving my point that early intervention works and what may look like autism when children are young is made clearer through time and intervention.

The 1 in 68 "estimate" from the CDC is based on a surveillance survey, "Researchers reviewed records from community sources that educate, diagnose, treat and/or provide services to children with developmental disabilities. The criteria used to diagnose ASDs and the methods used to collect data have not changed..."

These were NOT medical diagnoses. The number is based on children receiving services and under what category.

I pity your SN child b/c your obsession is getting you no where. You obviously don't understand the initial CDC study on how they came up with the estimate. Please ask your pediatrician, ST or other health professional that your child sees to explain it to you.

[Anonymous]

I'm sorry but being autistic myself I find the "outgrowing autism" trend very very concerning. If you at some point in your life are not autistic anymore then you weren't autistic in the first place. Autism is not an illness that can be cured. It's a disability. It's a neurological variant that doesn't ever go away. Anyone who loses their autism diagnosis was misdiagnosed. Which is VERY possible especially seeing how young diagnosis is made these days and how easily you can get one even if you only want services.

Truly autistic people are not done any service with this lax treatment of autism diagnoses. Please keep that in mind when you make your arguments, seek your diagnosis, talk to people etc.

[Anonymous]

Anonymous wrote:It's not about "curing."

Again the CDC data is saying more kids are getting early intervention services...[Hand smack to head.]

I don't think anything in the study is linking the results with early intervention services. People may hypothesize. But that wasn't what the study was measuring.

The reality is that all children, by their very nature, are in a constant state of development from birth through age 20. You can't therefore assume that, where a kid gets a diagnosis at age 2 for having developmentally lagging behavior, receives therapy and ultimately catches up developmentally by age 16, that the treatment worked. Without a more fulsome study, you have no idea if it was the treatment versus the fact that the kid was just destined to take longer to develop age-appropriate behavior.