New Study: High Autism Rates Due To Over-Diagnosis

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ASPartOfMe
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24 Oct 2015, 2:08 pm

glebel wrote:
Exactly. They should definitely spend more time and effort helping Aspies to assimilate into society.
.


And helping society understand and make reasonable accommodations and not persecute those that won't or can't. A more understanding society helps asimmilation.


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24 Oct 2015, 3:04 pm

ASPartOfMe wrote:
Very telling that for all the reasons given as possible explanations for diagnostic reversal there was no mention of people learning coping mechanisms or people maturing.

This was my initial thought as well.



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24 Oct 2015, 3:51 pm

It seems like the message here should be that non-qualified medical personnel like pediatricians should use these screening tools to make referrals to specialists, rather than to make their own diagnoses or assume that a positive result is a false positive. I didn't see a link to the study being discussed, just other studies about the percentages of autistic children estimated (http://www.cdc.gov/ncbddd/autism/data.html). In fact, one link in the first CDC overview actually says "Research has shown that a diagnosis of autism at age 2 can be reliable, valid, and stable. http://www.ncbi.nlm.nih.gov/pubmed/16754843"

The article left a lot of unanswered questions: were the children referred to specialists? At what age were they diagnosed? What interventions and therapies were used, if any? What tests determined that they were false positives? Either the article left out too many details or the study was poorly done. All sorts of conflicting conclusions can be made from it.


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24 Oct 2015, 7:12 pm

GodzillaWoman wrote:
It seems like the message here should be that non-qualified medical personnel like pediatricians should use these screening tools to make referrals to specialists, rather than to make their own diagnoses or assume that a positive result is a false positive. I didn't see a link to the study being discussed, just other studies about the percentages of autistic children estimated (http://www.cdc.gov/ncbddd/autism/data.html). In fact, one link in the first CDC overview actually says "Research has shown that a diagnosis of autism at age 2 can be reliable, valid, and stable. http://www.ncbi.nlm.nih.gov/pubmed/16754843"

The article left a lot of unanswered questions: were the children referred to specialists? At what age were they diagnosed? What interventions and therapies were used, if any? What tests determined that they were false positives? Either the article left out too many details or the study was poorly done. All sorts of conflicting conclusions can be made from it.



I agree, because what's being done is leading in a whole set of people to believe something that might not be true. Imagine your local country bumpkin doctor who is not qualified to make a diagnosis but literally giving an 'unofficial diagnosis' if anything it is unethical and that doctor should lose his license as this sounds like malpractice.

Now imagine someone with severe mental instability be given 'unofficial diagnosis' by someone not qualified to diagnosis now some 'city' doctor later in life correctly gives a proper diagnosis. Now this mentally unstable person will become more unstable because some Yokel put the idea in his head.

I want to say unqualified doctors and therapists who do not have the power, training, and the jurisdiction to diagnosis are just as bad as the Dr Mom's who create the scores of Self Diagnosed who run around with a possible mental issue going around untreated or not properly treated.

Rocket123 wrote:
ASPartOfMe wrote:
Very telling that for all the reasons given as possible explanations for diagnostic reversal there was no mention of people learning coping mechanisms or people maturing.

This was my initial thought as well.


First before we can help or others can help they need to know what exactly is wrong with the person. Without a proper diagnosis what may work for someone on the Autism Spectrum might not for someone who has a Psychotic Disorder.

Let's use one of those people running around as a self diagnosed autistic. Your so sure you autistic but when you finally melt down and your 'forced' to be treated and it's noted that the person has a psychotic disorder and was never autistic in first place they can begin to that the person in the manner needed for someone in that state.



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24 Oct 2015, 7:23 pm

Would it also have something to do with the ethics of the diagnostician?



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24 Oct 2015, 7:27 pm

FogOfLife wrote:
Would it also have something to do with the ethics of the diagnostician?


Exactly, a Psychiatrist can write scripts for people to take so they have a reason to push people into a disorder. Your local doctor is just using it as an excuse to get more visits its like the bad doctors who order or recommend his patients to have their tonsils removed for no reason.



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24 Oct 2015, 7:30 pm

HisShadowX wrote:
GodzillaWoman wrote:
It seems like the message here should be that non-qualified medical personnel like pediatricians should use these screening tools to make referrals to specialists, rather than to make their own diagnoses or assume that a positive result is a false positive. I didn't see a link to the study being discussed, just other studies about the percentages of autistic children estimated (http://www.cdc.gov/ncbddd/autism/data.html). In fact, one link in the first CDC overview actually says "Research has shown that a diagnosis of autism at age 2 can be reliable, valid, and stable. http://www.ncbi.nlm.nih.gov/pubmed/16754843"

The article left a lot of unanswered questions: were the children referred to specialists? At what age were they diagnosed? What interventions and therapies were used, if any? What tests determined that they were false positives? Either the article left out too many details or the study was poorly done. All sorts of conflicting conclusions can be made from it.



I agree, because what's being done is leading in a whole set of people to believe something that might not be true. Imagine your local country bumpkin doctor who is not qualified to make a diagnosis but literally giving an 'unofficial diagnosis' if anything it is unethical and that doctor should lose his license as this sounds like malpractice.

Now imagine someone with severe mental instability be given 'unofficial diagnosis' by someone not qualified to diagnosis now some 'city' doctor later in life correctly gives a proper diagnosis. Now this mentally unstable person will become more unstable because some Yokel put the idea in his head.

I want to say unqualified doctors and therapists who do not have the power, training, and the jurisdiction to diagnosis are just as bad as the Dr Mom's who create the scores of Self Diagnosed who run around with a possible mental issue going around untreated or not properly treated.

Rocket123 wrote:
ASPartOfMe wrote:
Very telling that for all the reasons given as possible explanations for diagnostic reversal there was no mention of people learning coping mechanisms or people maturing.

This was my initial thought as well.


First before we can help or others can help they need to know what exactly is wrong with the person. Without a proper diagnosis what may work for someone on the Autism Spectrum might not for someone who has a Psychotic Disorder.

Let's use one of those people running around as a self diagnosed autistic. Your so sure you autistic but when you finally melt down and your 'forced' to be treated and it's noted that the person has a psychotic disorder and was never autistic in first place they can begin to that the person in the manner needed for someone in that state.


it's very hard to confuse psychosis with autism. do you know the diagnostic criteria for both?



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24 Oct 2015, 7:42 pm

Additionally, a later diagnosis of a psychotic disorder does not by itself negate an autism diagnosis.

It is possible for negative symptoms of schizophrenia to resemble autism, however.



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24 Oct 2015, 7:50 pm

Where I live there is a HUGE amount of kids diagnosed with autism. Literally 1 in 3 kids in the public school system is considered to be part of special education, MANY diagnosed with autism. At least where I live, which is NOT in the US, I have seen kids diagnosed with autism and I look at them and think "no way". Sadly, welfare/food stamps pays more here if your kid has some type of diagnosis and the parents are looking to get more money, yes, truth. Literally my neighbor had 8 grandchildren and 6 had some diagnosis. I watched some of her grandchildren and the kids were literally being raised alone. Mom was too busy on her phone and kids that were 1, 2, 4 5 were walking up and down stairs in an apartment complex unsupervised all day long. So where I live, I do believe that some are misdiagnosed, as the kids need services because they don't speak, have psychological problems, etc. and the experts are afraid of diagnosing RADS or saying the word NEGLECT, therefore, they diagnose the kids just to get them services. Sad, but true. I have spoken to some experts who have indeed told me this.

However, that doesn't mean that there aren't many who are diagnosed correctly. I also think that there are many teens/adults yet to be diagnosed. At some point the numbers will hold steady.



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24 Oct 2015, 8:16 pm

whatamess wrote:
Where I live there is a HUGE amount of kids diagnosed with autism. Literally 1 in 3 kids in the public school system is considered to be part of special education, MANY diagnosed with autism. At least where I live, which is NOT in the US, I have seen kids diagnosed with autism and I look at them and think "no way". Sadly, welfare/food stamps pays more here if your kid has some type of diagnosis and the parents are looking to get more money, yes, truth. Literally my neighbor had 8 grandchildren and 6 had some diagnosis. I watched some of her grandchildren and the kids were literally being raised alone. Mom was too busy on her phone and kids that were 1, 2, 4 5 were walking up and down stairs in an apartment complex unsupervised all day long. So where I live, I do believe that some are misdiagnosed, as the kids need services because they don't speak, have psychological problems, etc. and the experts are afraid of diagnosing RADS or saying the word NEGLECT, therefore, they diagnose the kids just to get them services. Sad, but true. I have spoken to some experts who have indeed told me this.

However, that doesn't mean that there aren't many who are diagnosed correctly. I also think that there are many teens/adults yet to be diagnosed. At some point the numbers will hold steady.


Where I live single moms get free daycare, health, food, housing/ They even get 24/7 day care so they can go 'turn up' at the club get another guy to knock her up so she can get more benefits. When she is too tired from clubbin she takes the kids to grandma



whatamess
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24 Oct 2015, 9:52 pm

HisShadowX - understood, but my point is that where I live many are getting the diagnosis because it helps the parents, regardless of what other help they already have. For example, you can get unemployment benefits FOREVER if you say that you have a special needs child and therefore cannot work. Autism is the new thing, one that society does not blame on parenting as much as ADHD/neglect/RADS, therefore, it is being used here for this purpose...which increases the numbers drastically.



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24 Oct 2015, 11:29 pm

alex wrote:
Fnord wrote:
babybird wrote:
My daughter has ASD but hasn't been diagnosed...
If she is not diagnosed, then how do you "know" that she has an ASD?


You would know if she met all the symptoms. If your daughter is sunburned but you haven't gotten a diagnosis from a doctor, how do you "know" she's sunburned? Maybe it's something else. :roll:


<3

This may just be alex' best post ever.

Self diagnosis is not necessarily misdiagnosis, as so many anti-self-diagnosis people around here seem to think.


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24 Oct 2015, 11:37 pm

Another story about this:
http://www.nbcnews.com/health/kids-heal ... ed-n450671

Quote:
The survey also suggests that up to 4 percent of children are helped with early therapy, or outgrow their symptoms, Stephen Blumberg of the National Center for Health Statistics and colleagues found.


Loosing their diagnosis for these reasons is hardly "over-diagnosis" as was both implied and explicitly denied in the CNN piece. The clarity of the reporting in the NBC story makes CNN look very shoddy and inadequate. Usefully, and unlike the CNN report, they provide a link to the study:
http://aut.sagepub.com/content/early/20 ... l.pdf+html

The full text is available for viewing or download as a PDF.

The NBC report goes on to say:

Quote:
Blumberg's team followed up on a national survey of more than 1,500 parents of kids with autism.

"Approximately 13 percent of the children ever diagnosed with autism spectrum disorder were estimated to have lost the diagnosis, and parents of 74 percent of them believed it was changed due to new information," Blumberg's team wrote.

This means 9 percent of the children originally diagnosed with autism got that diagnosis changed. Many got a new diagnosis of attention deficit/hyperactivity disorder or ADHD, the researchers found.


This story makes it clear that this has nothing at all to do with self diagnosis and little, if anything, to do with willful gaming of the system or any of the other pet theories that self-appointed guardians of autistic purity like to promote.

Some detail from the abstract of the study itself is even more informative:

Quote:
Previously diagnosed children were less likely to have parents with early concerns about verbal skills, nonverbal communication, learning, and unusual gestures or movements. They were also less likely to have been referred to and diagnosed by a specialist. Previously diagnosed children were less likely to have ever received a diagnosis of Asperger’s disorder or autistic disorder.


That means people who were diagnosed by a specialist were less likely to lose the diagnosis. People who were diagnosed with autistic disorder or Asperger's disorder were less likely to lose the diagnosis.

So much for the weakness of DSM-IV standards!

This study should give some reassurance to doubt-ridden people with an Aspergers Disorder diagnosis and provide no comfort at all to anti self-diagnosis crusaders.



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25 Oct 2015, 1:00 am

I agree with ASPartOfMe. What about learning coping mechanisms which could cause a person to "lose" a DX later in life simply because s/he has learned how to "act" less autistic, given so much of an ASD DX is based on function? When I was seven years old, I could often be found rocking silently on the playground for 25 minutes without stopping, with my head buried in my knees to shut out all the confusing sounds and sights. I grunted and did other vocal stims, spoke in a voice described by my mother as "robotic" and had a "flat"-looking expression even when I was happy, sad, telling a joke, etc. Today, I'm pretty sure I'd never be DXd as autistic unless going off my very, very past history of how I acted and functioned externally. (In fact two of my sons' doctors have asked me if I was ever DXd as being on the spectrum without my asking or even hinting, only by answering their standard questions about my and my husband's histories. Both told me I probably couldn't be DXd today due to how well I "function," hence I'm not "impacted" negatively/impeded, plus based on the absence of stims, as I have "self-extinguished" them; but that they believe very firmly that I must be on the spectrum based not only on my past but, per further probing, on the numerous coping and compensation skills I told them about that I still use today.)

I have spent four decades teaching myself how to "act" NT but there are some things I will never overcome, and they are internal. Yet a DX requires not just "some" autistic characteristics (for instance, I'll never stop having intense special interests, and I'll never stop being overwhelmed by sounds and visual stuff), but X amount per category, in all required categories.

Does that mean if I had been DXd in 1974 before I'd spent the majority of my life giving myself "social stories," reading every possible human behavior book I could possibly get my hands on and making an intense study of mimicry of the NT population, down to how I modulate my voice, move my hands during conversation and how much eye contact is considered "normal," then my initial DX would have been "wrong" and part of an "over-diagnosis trend"? I don't believe I'm unusual as regards all this, either. I have heard many stories from other people, particularly in the 35+ age group (pre-autism awareness development as it has led to today and as continues to be understood).

These days red flags are observed much, much earlier than ever in the past and very, very small children are being given intensive therapies. They "learn to act" NT much earlier than, for example, someone like me who was flying by the seat of her pants. If they can "act" NT and can't meet all the ASD criteria any more, does that mean initially, they were mis-diagnosed and this is some gigantic problem of doctors just all jumping on the bandwagon of rushing to an ASD DX or something?

Now at the same time, there's another thing I agree with ASPartOfMe on. Yes, it's probably a mistake to DX a very, very young child with ASD. In fact, my son's assessors told me that was why they wouldn't give an ASD DX initially. Instead, he was originally DXd with PDD-NOS. The primary psych on the assessment team told me there are too many "autistic-like" behaviors in toddlers that are actually just part of their immaturity and which later they will grow out of, just like a whole lot of other things very little children grow out of. She said it would be clearer as he became older, she was right, it was, and he was DXd moderately autistic at age 4, after his third set of assessments and 2.5 years of OT, ST and SDC.



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25 Oct 2015, 1:38 am

NowhereWoman wrote:
I agree with ASPartOfMe. What about learning coping mechanisms which could cause a person to "lose" a DX later in life simply because s/he has learned how to "act" less autistic, given so much of an ASD DX is based on function? When I was seven years old, I could often be found rocking silently on the playground for 25 minutes without stopping, with my head buried in my knees to shut out all the confusing sounds and sights. I grunted and did other vocal stims, spoke in a voice described by my mother as "robotic" and had a "flat"-looking expression even when I was happy, sad, telling a joke, etc. Today, I'm pretty sure I'd never be DXd as autistic unless going off my very, very past history of how I acted and functioned externally. (In fact two of my sons' doctors have asked me if I was ever DXd as being on the spectrum without my asking or even hinting, only by answering their standard questions about my and my husband's histories. Both told me I probably couldn't be DXd today due to how well I "function," hence I'm not "impacted" negatively/impeded, plus based on the absence of stims, as I have "self-extinguished" them; but that they believe very firmly that I must be on the spectrum based not only on my past but, per further probing, on the numerous coping and compensation skills I told them about that I still use today.)

I have spent four decades teaching myself how to "act" NT but there are some things I will never overcome, and they are internal. Yet a DX requires not just "some" autistic characteristics (for instance, I'll never stop having intense special interests, and I'll never stop being overwhelmed by sounds and visual stuff), but X amount per category, in all required categories.

Does that mean if I had been DXd in 1974 before I'd spent the majority of my life giving myself "social stories," reading every possible human behavior book I could possibly get my hands on and making an intense study of mimicry of the NT population, down to how I modulate my voice, move my hands during conversation and how much eye contact is considered "normal," then my initial DX would have been "wrong" and part of an "over-diagnosis trend"? I don't believe I'm unusual as regards all this, either. I have heard many stories from other people, particularly in the 35+ age group (pre-autism awareness development as it has led to today and as continues to be understood).

These days red flags are observed much, much earlier than ever in the past and very, very small children are being given intensive therapies. They "learn to act" NT much earlier than, for example, someone like me who was flying by the seat of her pants. If they can "act" NT and can't meet all the ASD criteria any more, does that mean initially, they were mis-diagnosed and this is some gigantic problem of doctors just all jumping on the bandwagon of rushing to an ASD DX or something?

Now at the same time, there's another thing I agree with ASPartOfMe on. Yes, it's probably a mistake to DX a very, very young child with ASD. In fact, my son's assessors told me that was why they wouldn't give an ASD DX initially. Instead, he was originally DXd with PDD-NOS. The primary psych on the assessment team told me there are too many "autistic-like" behaviors in toddlers that are actually just part of their immaturity and which later they will grow out of, just like a whole lot of other things very little children grow out of. She said it would be clearer as he became older, she was right, it was, and he was DXd moderately autistic at age 4, after his third set of assessments and 2.5 years of OT, ST and SDC.


The actual study does mention maturation and coping mechanisms as possible reasons.
It is wrong to talk about people wrongly diagnosed as autistic and not take into consideration those who incorrectly have thier diagnosis taken away from them.


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25 Oct 2015, 2:06 am

All that CNN article illustrates to me is the irony of neurotypicals asserting that we are the ones who supposedly can't see the bigger picture...